NutrEval Results Are In

Here are the results! I finally figured out privacy options on photobucket, so here's a link to the album with the NutrEval results. The guest password is birdladyblog to gain access! No offense but I didn't want any of you rummaging through my personal album, so everything is locked down now. haha!!

The results are QUITE extensive. My urinary MMA, Formiminoglutamic acid and Sarcosine are all elevated, which according to wikipedia/google are indicative of a B12, B6 and B9 deficiency. I guess this wouldn't be such a big deal if I haven't already been taking 1000mcg of Methyl B12 and Folate (B9) on a near daily basis!

There are a few amino acids on the list that have me really wondering what is going on.

I have the following elevated:
a-Ketoglutaric Acid (AKG)
Leucine
Isoleucine
Sarcosine
Formiminoglutamic Acid
B-Aminoisobutyric Acid
Taurine
Methylmalonic Acid
Tryptophan
Cysteine
Glutamic Acid
Proline
Arachiodonic Acid
Docosatetraenoic Acid (DTA)

Most of the things online only talk about if your levels are low...That doesn't help me much! haha

I'm on my own to interpret this test! More to come. I'm too tired to write a whole bunch up right now.

Interesting Development Regarding Antibiotics

I thought I'd bring my idea of an antibiotic helping my POTS symptoms to the dinet.org forum. This is a website dedicated to dysautonomic function. Apparently I am not the only one who has experienced this temporary relief of symptoms while on an antibiotic. One member suggests it could be a side effect of the actual meds, but I have to wonder if there is more to this!

My POTS did start around the same time when I contracted Epstein Barr Virus from some unknown origin. I wasn't dating anyone at the time (that I can remember), which is supposedly the "kissing" sickness.

Perhaps I have neglected this aspect of my problems. I didn't go on this antibiotic thinking I'd feel better. I just wanted to get rid of this darn infection so bad.

I don't know what to think about all of this. If you'd like to follow the thread on dinet you can find it here.

Check this out

This is kind of weird and I don't like to jump to conclusions too fast. First off I am not CURED or anything like that. However, these past few days I've been feeling better. Now I couldn't figure out anything that I had changed to make me feel any better. Hydrocortisone dose is the same, florinef is the same, salt intake the same. I haven't changed any supplements or anything like that at all. So what is it that IS different...

A few days ago I got a terrible bladder infection. It literally came out of no where. One minute was feeling great, next I was in terrible pain, having to pee every 5 minutes and I was actually peeing out BLOOD. My urine was red red with blood clots...YIKES. For the past few days I've been on antibiotics AND I've been feeling better! WOW!!

I really have no idea what that means, but it is certainly interesting. Yesterday I rode nearly 2 miles on my recumbent bike and then we went for about a mile walk. I had my usual fatigue, but my heart wasn't that bad at all. Maybe I am just having a good few days and it is coincidental.

Who knows but I will definitely take it.

Things I Do To Stay Cool

It's pretty hot here in western PA today. Right now it says it's 81 with 66% humidity. The humidity has finally kicked in this year, which makes getting around pretty darn frustrating. Since I have medical conditions that are worsened by the heat, I've learned ways to cope and keep cool.

1) Water, water
I always try to have some sort of drink on hand. The problem with just drinking water with POTS or adrenal insufficiency, is that you'll actually mess up your electrolytes even more. With my water, I also take Thermotabs which is a sodium chloride tablet. This helps me to get fluids without bringing my sodium levels down too low.

2) Wear as little clothing as possible
I know this sounds like dumb tip, but it does help to strip down to bare minimums. During the summer, I'm usually wearing my bikini top and shorts.

3) Wet towels
If you are really really hot and can't seem to cool down, then placing a cold wet towel/rag on the back of your neck really works wonders. You'll have to get new cold water often though!

4) Cooling Vests
I do not own one of these, but I've heard they are absolutely amazing. There are several websites that sell vests which are meant to hold ice packs. The ice packs last a few hours and can be refrozen over and over again. Some people on dinet.org say they make the summer much more enjoyable for them as they can do things they wouldn't normally be able to do.

5) Invest in a fan/air conditioner
We do not have whole house air conditioning, which is probably a little unbelievable for some of you. Our house is old and does not have the duct work available, so we are forced to use the window units. It's nice to keep at least 1 room in the house as the "sanctuary room" that I can run to when I am getting really overheated. If humidity isn't a problem where you live, then a fan or swampcooler may work really well for you too.

6) Dip in a pool or lake
If you own a pool or have a neighbor with a pool, this is always a really good option. Getting into a cool, swimming pool can feel absolutely amazing when it's hot outside. If you aren't lucky enough to have a pool nearby, then the local lake will work too! I'm not much of a "beach" person, but this year I think I might try out the swimming area at a lake near my house. It's better than suffering in the heat.

Always Gather Your Medical Records As You Go

I've been on the phone with various doctor's offices in the past few days and this entire experience has made me realize how important it is to gather your medical records AS YOU GO. My pediatrician said that '84 birthdays have been destroyed and that my next best bet was to call the doctor's office I transferred to after them. Well that office has NO idea whether those records are there or not unless they pull them from storage. Pulling them from storage involves a fee, about 2 weeks of time and who knows what other hassles.

If I ever have children, I'll be sure to keep all of their medical records on file for them. That way when they get older, I'll be able to hand them over to them after high school for future reference and they won't have to go through all of this.

You never know when you'll need to look through you or your child's records. As a parent you'll be more aware of any trends that are occurring with blood work too. We tend to listen to our doctors when they say things are normal without ever seeing labs. If we gather our labs, then we can become our own advocates and avoid suffering with conditions for many many years.

NutrEval Finally DONE!

I've had this kit for so many months, but finally got around to getting the NutrEval test done. The test is soo convoluted and it requires a lab or hospital to take 4 vials of blood, spin them down and then transfer cells and plasma into separate tubes. No one wanted to do it for me. Labcorp and Quest diagnostics were worthless. There was 1 lady who said she'd do it for me at Quest, but she couldn't guarantee if she wasn't working that the lady who was would. Well that does me NO good because I have to take urine the morning of too.

I found a local hospital (about 45 minutes away) would do it for me for a mere $7 charge. So we traveled up north and got it done. It was still a disaster...The lady seemed confused and I just told her to follow the directions and I'll take the blood and vials with me. We got everything and I called Fed-Ex to come pick it up. I'm just waiting for them now.

This test is very comprehensive. So much so that I will have to do a lot of research in order to interpret the results! Here's a sample report in PDF I'll expect to get from them. I am mostly interested in the nutrient, element and catecholamine information.

Tomorrow I may call Cleveland Clinic to see if they have the results of the catecholamines yet.

Edit: FedEx just came and it's gone!

Update:
Here are my results to the NutrEval test.
If you would like more in-depth information on what my results showed, then read this post.

Cooking With POTS

This isn't about cooking with cooking pots, but with POTS (Postural orthostatic tachycardia syndrome). I thought this would be a fun considering the lovely pun! (hehe I rhymed)

Cooking with POTS is about as difficult for me as what a healthy person would equate to running 5 miles. Getting the pots out of the cabinets takes so much effort. GOD forbid something is still dirty from the last meal and I have to rewash it. I slowly stand up from the squatting position and walk over to the sink to fill it with water. Once that pot gets heavy, my arms just want to stop holding it because my heart doesn't appreciate this extra effort, so I rest it on the metal lip of the sink. Phew. That makes it a little easier.

I walk over to the refrigerator and grab some frozen vegetables and/or rice. These are 2 easy side dishes for me. The amount of required standing is minimal, so it's not soo bad. Still during this entire time my heart rates are 135+. I dump the rice or veggies into the pot and set it down on the stove. Almost there...phew!

Now I got to get the main dish ready! Oh no. This is normally when I really start to feel the "burn"....Grabbing another heavy dish out of the lower cabinet is tough. Going from that squatting position to standing again is terrifying. Now I got to walk over the refrigerator, get the chicken out of the refrigerator and prep it. I'm not that creative when it comes to food dishes, but I always make sure I put a lot of salt on my foods!

By the time I wrap aluminum foil over the dish, I need to get out of the kitchen and sit down.

On really bad days I just can't even do it. I have to ask my husband to cook because I'm soo tachycardic.

This might sound weird, but if I were a fainter, then people could SEE I'm suffering. "oh wow this girl isn't feeling so well, she fainted". But nope, I don't faint so as long as I look okay people think I must feel okay. I can certainly tell you that is not the case. I'm a stubborn person, so I just keep going until it gets soo difficult.

Since we are gluten free, egg free and we watch the ingredients in our foods very carefully, we cannot order out EVER. We cannot eat out EVER. I have to make every single meal in this house and it's tough some days. I'm not complaining about making the food, I just know that even normal mom's and housewives depend on McDonalds, Pizza Hut or their local Chinese restaurant at least a few times a week and I don't have that option! I really wish I could order a Made to Order sub at the gas station down the road...Nope can't do that. No matter how bad I feel someone in this house has to cook and it's my responsibility!

On Tuesday or Wednesday, we are getting the blood drawn for the NutrEval test, which will test A TON of different nutrients. I am hoping it finds something really wrong so I can start supplementing with it. Maybe this is just a rare nutrient deficiency and I'll get better!

The Trip to Cleveland Clinic

The drive there was a lot worse than I was anticipating. I don't remember the drive to Cleveland being such a problem, but it was awful. Our GPS told us to go over a closed a bridge, make lefts where we were not able to (divided highway) and was generally wrong most of the trip.

We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!

I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.

Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.

The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.

My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.

Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.

Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.

After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.

I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...

They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha

Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45.

Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!

During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!

After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.

Overall I am happy that my heart cooperated! lol

My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.

On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.

I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!

Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!

Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83

Mentally Preparing Myself for Cleveland Clinic

I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.

I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.

"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.

Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.

All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.

Well that didn't work...

Sometimes you have to take things away before you realize how much of an effect they were having.

I sincerely forgot to take my beta blocker a few days ago. Well I didn't notice any problems, so I thought I'd "forget" the next day. I went 2 days without any problems whatsoever. My heart rates have been high since it's warmer out now, so having high heart rates wasn't alarming to me. Today, I purposely did not take the beta blocker. I didn't think anything of it and was going about my day. I noticed my heart was beating REALLY weird. I thought it was odd, so I started to feel my pulse and I could actually feel the skipping beats. I've never ever in my entire life have felt my heart do what it was doing today. It scared the living &%#^ out of me.

I realized that I needed to take the beta blocker and see if it got my heart beating back on the right track. It was all over the place. It would go really fast for 4 beats, then slam into my throat really slow, speed back up and rinse, repeat. All of this was happening as I was trying to find a new pair of pants to buy! haha I was sweating in the dressing room and just felt soo uncomfortable and even nauseous. It took 45 minutes for the beta blocker to kick in and then all of those crazy beats disappeared...completely. I have no idea what happened to me today, but I was ready to go to the ER. I didn't even think to take my BP today. /SIGH

Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now.

In 2 weeks I am going to Cleveland Clinic. I have to get all the paperwork (labs) ready. I was trying to be off the beta blockers for the TTT, but I'm not sure I can even do that...

Lowering my HC

This is one aspect of my treatment that I've never changed, so I've decided to start slowly wean down on the HC. Originally I was on 30mg of HC and that was way too much for me. Then I went down to 25, 20 and now I've been on 17.5 for about 3-4 weeks.

Today is my first day at 15mg and I'll hold steady here for a few weeks to see how I am reacting to it. I want to be on the least amount of HC as physically possible.

Forced Myself

I was not really feeling so well today, but I made myself go to the park and walk some. Heart rates were entirely too high for the level of activity I was doing, but it was nice to have the sun on my face. Afterward, I crashed. Just had to take a nap. The nap made me feel even worse (if that's possible LOL), but now I've recovered.

It's 12:30am and I only now feel good.

Today is a TERRIBLE POTS Day

Today is just SOO awful. How the hell am I supposed to live like this? I just feel like bursting out in tears because my the youthful years of my life have been wasted. If I can feel this terrible at 26, then I'll likely be in a wheelchair at 40.

Main Problems/Symptoms

I've decided to make a post that discusses what my continuing health problems are even though I've been on HC for nearly a year now! I'm also going to touch upon what has gotten better. Sometimes it's really easy to focus on the bad and I'm trying to get away from that negativity.

Symptoms that still linger:

• Lowish BP, without lightheadedness
• Anxiety
• Fluid Retention
• Rapid heart rate upon standing
• Heat intolerance
• Panic attacks set off by minor stressors
• Shortness of breath
  

What's better:

• Panic attacks are actually less frequent
  
• Fatigue improved significantly
• Able to get out of bed in the morning now!
• Not sleeping 16 hours a day
• Can partake in some activities (as long as my heart is stable)
• Frequent urination and thirst decreased significantly
  
• Sex drive is back! Woohoo!! ;-)

Most of my lingering symptoms, I would attribute to POTS. In my case, treating adrenal insufficiency DID NOT cure orthostatic issues. Because of that, I have to assume that not everyone WITH low BP and tachycardia upon standing even HAVE adrenal issues. Something else is going on that hasn't been uncovered.

Small Victories

I went to the store today on my own. YAY! I didn't freak out or have any anxiety about it. Often times I only post the negative things that happen in my life, so I thought I'd throw in a good one!

My headaches are gone, so I have to assume it was the florinef. I'm bummed about it, but at least I feel better now.

My weight has been up and down. I lose/gain 5 pounds give or take from day to day! haha Very weird, but I've always been like that for as long as I can remember.

Today the sun is shining, so that helps. It's a little chilly and quite windy, but I'm happy. The cat grass is finally sprouting outside, so the kitties will have a treat in a few days.

Headaches

I have been getting TERRIBLE headaches lately. They will come out of no where and I feel so awful. My husband thinks it's the stupid florinef. /sigh I'm not sure at the moment, but it's been like 5 days straight with it! It hurts on top of my head, but also behind my eyes. It's worse when I bend down or try to lift anything like my head is going to explode. I never got this when I was on the florinef before, so I don't know what to think. It is allergy season as everything is bloomed, but I never had any allergies before.

It just seems like I am always battling something.

Tomorrow I am watching my nephew and I'm already nervous about driving down there. Actually I'm not nervous about the drive. I'm nervous about being away from home. I am scared to go to places without my husband with me. I had a major panic attack the other day when I had a chiropractor appointment. My husband ended up driving me because my blood pressure was like 130/92 (crazy high for me), I was freaking out and just started crying.

Had A Good Day

Today I had a good day and I don't know why. I hate that. If I had changed something to make myself feel good, then I'd be more excited. Oh well I'll take it.

I feel more puffy again though. The fluid retention is returning...

I've Been A Wreck

I really don't know what is going on with me, but I haven't been doing too well. Basically here is how things have gone down.

1) Went on beta blockers a few months ago with huge, life-changing improvements.
2) Started gaining some weight, fluid retention.
3) Developed Chilblains on my toes.
4) Heat wave set me back with heat intolerance, rapid heart rate
5) Added in Florinef to see if that would help
6) Anxiety begins to set back in
7) Increase florinef to 1/2 tab to see if anything changes, Added in Rx potassium too.
8) Feeling jittery, shaky, "out of my mind" like I drank too many red bulls or espressos

That's where I'm at right now. I cannot for the life of me figure this out. What is happening? Did the florinef do something or am I just getting worse because I am just getting worse?

Today is my birthday and when I should be happy, I'm pissed off. I'm not any freaking better. Yesterday was one of my worst days in like 8 months. I was soo jittery and shaky. Nothing would calm that down and then the nausea set in later on in the day. HC didn't help it, so I just forced myself to eat. I really wish I could see what is wrong and then fix it.

Fluid Retention

Oh my goodness the fluid retention is actually HURTING. I can't take this anymore. What am I supposed to do about this? My calves are huge, my wedding ring is barely fitting now and I just look like a freaking balloon.

First time for everything

Today was pretty hot as I complained about earlier. Tonight as I was making dinner, I noticed that I was feeling really nauseous. It really just came out of nowhere.

Dinner was ready and I started eating. By the time I was finished, it felt like a pile of concrete was in my stomach. All I had was 2 chicken wings and a salad...

I was getting this fullness near my breastbone and I started to get the chills. The waves of nausea were getting more frequent and even more uncomfortable than the last. Out of desperation, I decided to sublingual a 5mg HC tab to see what would happen. I was not late on my doses and I didn't particularly do anything strenuous to need a "stress dose". However within 5 minutes, I knew that the HC was helping. I sublingual-ed another 5mg because I figured if I was that far down the low cortisol chain, I wasn't far off from my BP dropping and it heading into something much more dangerous.

Today I can say was the first time that I've experienced nausea to that extent from low cortisol. The sad thing is that I have no idea what triggered it. Within 20 minutes of taking the extra HC, I was up and about doing my normal nonsense. There's no way it was placebo as I had my head in a bucket getting ready to barf. It sort of freaked me out because I showed no other signs of low cortisol! I ended up taking 32.5mg of HC today.

Heat Intolerance : I'm screwed!

I was really hoping that the beta blocker would help with the heat intolerance, but I'm not that lucky. I figured this would happen, so I started taking 1/4 tab of florinef 4 days ago. I haven't noticed any differences yet, but I'm not looking forward to the weight gain THAT med will cause me. Ugh...I've gained like 10 pounds just in time for summer. It's not supposed to be like that.

I was going to lay out today because it's 80 here, but I can't. There's no way my heart can handle it at all. I didn't have my watch on me, but I bet I was hitting 150 BPM.

Some days I just want to start throwing stuff, punching holes in walls and screaming at the top of my lungs. As you can guess, today is one of those days.

Would I Be Happy If...

...Time to just step away from POTS for a moment and to just let my brain flow for a moment...

I was told as a young women to love myself, embrace what we are given, don't be jealous of what one another has yadda yadda yadda. Whatever. Yet all of that is a bunch of nonsense to make ourselves feel better about how we will NEVER match up to what is "expected". Seriously. You don't see women with pear shape figures in lead roles in movies, TV shows or on magazine covers. You don't see many women with small breasts either and if they are small, they are taped, wrapped up or squeezed into corsets to look huge. I know some of you are thinking...Well that isn't our fault. It's the media's fault! I guess it doesn't matter WHO'S fault it is, it's what is expected these days.

The question I've been thinking about for the past few days has been...Would I be happy if I had full, normal sized breasts? Even the girl at Victoria's Secret told me that none of their bras fit right because I have zero chest fat. In her words, "you have nothing to push-up". This girl likely sees hundreds of women a week and I was one of the first for her with this problem. Considering that, sadly, I think I would be happier. Does that make me a pathetic person controlled by the media? Nope, I just want to fill-out a bra for once in my lifetime and not be self-conscious about it.

Okay enough of that. I'm just really frustrated with myself lately. Where's a punching bag when you need it?

/sigh

Uh What is this about?

I remember I posted some weeks back saying that I was the thinnest I had been for a long time. It was a nice! Well... in the past 2 weeks, I've gained so much weight that I am now the heaviest I've been for a long time. How the HELL does this happen to me? I feel like a balloon ready to pop and I suspect it's from the beta-blocker. I am holding onto so much water it's not even funny. I know this weight is not fat because my face and eyes are also very puffy and I haven't changed anything in my diet.

Seriously like 3 weeks ago I was thinking that I'd take myself to the store to buy new smaller jeans and now I'm thinking I'll have to go up a size. How does one gain like 11 pounds in 2 weeks?

I'm soo depressed because of this. My pants look terrible on me. I had a pair of skinny jeans I wore fairly often (and liked how I looked in them) and now they look terrible. AHHHHHH. I hate this!

MRI didn't go so well

I had the MRI today ordered by the ophthalmologist to rule out any sort of problems with the eyes or brain.

For part of the MRI I had to keep my eyes closed. This was OK for about 10 minutes, but then I started to get really disoriented and it felt like my body was floating on water. I tried to calm myself down, but I was well beyond that and felt the adrenal symptoms coming on. My eyelids started fluttering, I started to feel very faint and I just felt that last rush as my body tried to pull me through the stress of it. I realized at that moment, that if I didn't squeeze the ball and alert the techs, that I'd be unconscious in about a minute.

I squeezed the ball, but could barely talk. They ran in and I told them in broken speech that I needed my hydrocortisone for adrenal insufficiency. The lady asked me if I had them in my purse and I told her yes. She ran out and got my purse. They sat me up and I was very very faint. It felt like my blood pressure was scary low and the whole room was sooo bright. They walked me out of the MRI room into the tech area and they were asking me questions, but I could barely understand them nor get the words out. I ended up taking 15mg of HC and waited 3-4 minutes before I could feel my body come back to life. My hands were trembling as I drink water.

I went back in and finished the MRI. Phew...The whole time I was just like..please do not freak out again. I need to get this done. Please...please.

All of this happened before the contrast so it had nothing to do with that. Thankfully. I'm doing okay now, but could not believe how much that affected me!

Chilblains: From the beta blocker or B12?

Remember those weird itchy, but painful bumps on my toes? Well now I know what they are and it's either a complication from the beta-blocker or from low B12.

These little bumps are called chilblains and they occur when you are having poor circulation or if you warm the feet too quickly. Here's a link to a medical website that talks about them in more depth.

I started taking the beta-blockers about a week before these bumps showed up. At first they were very very itchy, but as long as I kept them covered it wasn't so bad. Then I noticed anytime my feet got warm, they'd burn like hell. Not long after this, my left leg started to feel numb like it feels when my B12 is low. I even made a post about the paresthesia returning.

I'm trying to put the pieces together. Maybe the "paresthesia" is from the beta-blocker and the poor circulation is then causing the chilblains too? I looked all of this up and it is possible according to this website.

"Some drugs such as beta- blockers may affect the circulation and cause chilblains"

Darn it. I might have to call the doctor and see what he has to say about it. The beta-blocker is helping so much I'd hate to have to quit it...

My Blood Pressure

As always my BP is low without florinef, but for whatever reason it's not any worse when on the beta blockers. I'm not complaining.

Tonight I thought I'd take my BP while sitting. Then take it immediately upon standing to see what happens. Normally my heart rate would go through the roof and my BP would fall even further.

Here's what it showed tonight.

Sitting: 92/66 HR 76
Standing: 95/68 HR 70

70....70 while STANDING! I don't care WHY, but these beta blockers have been amazing. I have an appointment with my EP on March 12th.

I think it might be impacting my thyroid slightly though as my basal temperatures have been really really low. Ugh...It's actually confused the LadyComp, which is what I use as my method of birth control. It's day 20 and it doesn't think I've ovulated yet... My temps aren't indicating that I have either, so I'm not sure what's up with that. Lately my cycles have just been odd. I used to get mid cycle pain, but that's gone now. Then my cycles used to be 24 days, but the past 2-3 months they were 29, 30 and 32. However, last month my cycle was only 26 days long. I don't get it at all.

Beta-Blocker Is Still Working

It's been a few weeks and I am still feeling very well on the beta-blocker. I take the generic form of Toprol XL called Metoprolol ER. It's a very small dose at 25mg. Going on them has been incredible for me and I will continue to take them as needed. The past week, I decided to start taking them every day as soon as I wake up and I haven't noticed any ill effects. Some days they do seem to make me feel a little tired, but it's not that bad. Certainly no where near the fatigue I felt prior to going on HC! haha

This week I need to clear the area out around my recumbent bike and I'm going to start working out again in small increments. I'm not really looking to lose weight or anything. I just want to get off of my butt and feel normal. I'll start out with 3 minutes (no joke) and then work up to 1o minutes. I won't go much more than that because I don't think I'm in good enough shape to be biking for 30 minutes or more. My adrenals are doing okay with the HC, but I don't want to push it since I'm not on florinef at the moment. I know I need it, but I can't start it yet.

Bumps on Foot, Getting Worse

Darn it. Why can't things just get better on their own? /sigh The bumps on my foot are getting worse. Very painful and making it difficult to walk. The original bumps have subsided, but the skin is still very shiny and red where they used to be. Now there are more bumps spreading on the surrounding toes, but these ones are way more painful than the original bumps.

I'll probably have to call the dermatologist on Monday and make an appointment. I'll let everyone what they are when I find out.

Leg Numbness and Tingling: Paresthesia is back

Ugh I hate this feeling! Let's hope that it's just low B12 because I can fix that (as soon as I get this STUPID Nutreval test done). Let's hope it's NOT the beta-blocker...! It's been awhile since this has happened because I take B12 sublinguals and I also get injections anytime I feel this coming on. Well since I was supposed to get the Nutreval test done, I stopped all vitamins and now it's coming to bite me in the butt. Just sitting at my computer desk, from the top of my knee cap all the way up to my hip is going numb, tingling. If I cross my legs or sit in one spot too long, my entire leg gets pins and needles. At night I am waking up constantly because my legs and hips are falling asleep. Oh my, I can't take this! I got to get this test done now before I go nuts.

Once the test is done, I have injectable B12 here at my house! I'll be injecting myself to save some $$ and if that helps I'm going to beg the doctor for a prescription. My mom said that her grandparents BOTH had pernicious anemia and had to get injections...Great. I wonder if that's why mine is always low and why I always have to keep taking a combo of sublinguals and injections to keep the numbness away. Maybe it's not just a dietary issue, but an absorption issue.

At the Eye Doctors...

It was an interesting visit with the more experienced ophthalmologist. First he said that I do not have a posterior vitreous detachment...Um....Okay wow? So I had 2 other doctors in that same practice tell me I did and then this guy says, nope.

He was quite concerned about the blobs, lines and "stuck" lights in my vision and has asked my PCP to order an MRI. He said that there is nothing wrong with my eyes and the White Without Pressure is absolutely nothing to worry about. He thinks the lights are neurological so I'll do it just so I can cross that off the list.

I was sort of ticked off yesterday after hearing all of this because what the HELL have I been doing for the past 8 months? I've gone into that eye doctor numerous times, examined at least 4-5 times by 3 different doctors and they all said I had a PVD? Perhaps those other doctors need to be retrained.

The good news is that, IF there is no structural damage done to the eye, then maybe I can solve the weird lights. Perhaps it's nerve damage from a mineral deficiency after all?

I got some old labs from Dr. G yesterday as well. I'm going to have my parathyroid checked as I had a few calcium levels above 10.0 with a low vitamin D level. I also am looking to have Intrinsic Factor antibodies and Parietal antibodies checked to screen for Pernicious anemia. My first B12 reading was 249! An interesting thing is that my FT3 before cortisol treatment at that time was 320 (230-420) which isn't all that bad.

Ugh Sinus Infection? Mild Flu?

My husband had some flu-like sinus bug for a few days and I thought I was lucky and completely dodged it. Well yesterday I woke up and my sinuses were clogged, throat was hurting from all the drainage and I just felt really out of it. DARN! I was really hoping that I'd missed this one. I don't feel achy or anything like that. Just clogged up, no taste, no smell and my ears are popping when I yawn. I took some extra HC and I think I'll be stress dosing slightly until I feel better. I did a lot of shoveling the night before I got sick. Maybe that's not a coincidence?

It could be a lot worse, but maybe it hasn't completely hit me yet...hahah

I forgot to mention...

...that I went to the eye doc last week some time. I got really sick of this light being stuck in my vision. The one lasted nearly 4 days. I finally found someone online that has this exact same thing as me, but sadly this thread was from 2007 and no one found anything wrong with his eyes. These lights only started AFTER I was diagnosed with the posterior vitreous detachment, so one would think there's a connection.

I saw the retina specialist I had seen originally who diagnosed the White Without Pressure and an impending vitreous detachment. This time he told me that the White Without Pressure looks really odd and it's not something he's ever seen before...Um. thanks? haha Now he wants me to see one of the more experienced retina specialists who has "25 years more experience than me". He said that since he's never seen this before, that he wanted someone else to take a look to see what we should do. He said that if this other doctor thinks it's necessary, then they may want to do pre-emptive laser surgery on it. I'm not exactly sure what is weird about it. He just said that it looks really odd, shiny, and very iridescent? These are the best, most recommended ophthalmologists in this area, so if he hasn't seen something then this definitely needs checked out. This doctor probably sees at least hundreds of eyes every week! He said that once he hears from the other doctor, then in 25 years when another case of whatever I have comes through the door, he'll know what to do...wtf? No one really has this? haha

The doc said that the lights I'm seeing may not be related to the White Without Pressure, but since I'm having some problems it's all the more reason to be seen. My appointment is February 15th.

Too Much Snow

We got A LOT of snow. It looks like up to 2 feet is outside right now and I have NO IDEA how we are going to shovel it all. Last time I tried to shovel snow, my heart rate nearly hit 200, I began to shake and I thought I was going to vomit and collapse. It took me nearly an hour to recover and that was only 10 inches of snow!

I took my beta blocker already, so that when I go out it should be working. I'm going to stress dose for this too with the HC and see what happens. I do not recommend anyone do what I'm doing... I'm just absolutely nuts/insane and don't want to see my husband do all the work. We both have "heart problems" now and I hate to see him get stuck with this.

Update: Shoveling went really really well. My heart was definitely up there, but I did not feel so fatigued,short of breath and faint. We still have another round or 2 to go, but I'll be okay. I did better than my husband...It HAS to be the beta-blocker. There is nothing else that is different and HC has never helped my heart problems.

Here are my blood pressures Sitting. 105/73 HR 89 Standing 117/69 HR 92 What a difference!

How'd that happen?

I noticed my pants were feeling kind of loose, so I jumped on the scale today. I've lost like 10 pounds in approximately 2 weeks or less. Holy cow...This is not good though as it is a sign that I'm ready to crash or something. Maybe it's my adrenals? Maybe it's all the emotional stress I've been under? I haven't weighed this "little" since before hormone replacement.

I guess I'll just enjoy it while it lasts because I know it will all be back sooner than later. My appetite has been pretty awful lately, so I bet it's that. I'd love to stay at this weight, but it's not going to happen and technically I'm underweight too...

Weird Bumps On My Foot

Yesterday morning I woke up with 2 really weird looking shiny, red bumps on my left foot. Now there must be a connection to what happened the night prior. I was getting dinner ready when suddenly I had a huge hive form on my lip. It was so big that it was actually difficult to talk and eat without hitting it! I thought it was really odd, but went to sleep and then woke up to the bumps on my foot...LOL

We will see what happens here. They are not itchy at all, but I guess slightly painful and they look really really shiny. If they dont' go away within a week I'll be calling that dermatologist I saw a few years back for my hair. She sucked, but at least she knows her stuff and can give me a proper diagnosis. I'm hoping it's just a fungus or something stupid that will go away with some cream.

My Sickness/Life Timeline...

This is a little timeline of how things progressed with me personally and my poor health. There are a lot of correlations with what was happening to me personally and with my health deteriorating.

I'm starting as far back as 4th grade because I already started to show signs that something wasn't quite right.


4th grade--Anxiety. Terrible anxiety. I would go to the guidance counselor every morning and cry. I still (to this day) have NO idea what I was scared of. I told the lady that I was always so stressed out feeling and that if I had any homework due that day, I was nervous I didn't do it right. I also had a male teacher and my counselor thought maybe that was my problem, but I never thought so...

5th grade--Completely fine. No anxiety about school except in math! haha

6th grade--Anxiety again. My grandmother died during the school year and I had a lot of trouble grieving. I would just bust out in tears during the middle of class if she gave us a hard homework assignment. I could not handle any type of stress whatsoever. This is also the year your body starts to change and I was not developing like the other girls in school. I had zero breasts and did not even need a bra, but I bought them anyway...


7th grade--This was an interesting year. I started to make new friends as all the schools come together in this grade. I ate very poorly during lunch (1 choco crunch ice cream bar every day) and I gained A TON of weight. At my heaviest I was about 150 and a size 10-12. Prior to this I was always VERY skinny and could eat anything I really wanted without worrying about the waist/butt growing. Not anymore after this year. I started working out with Taebo and I lost about 15 pounds! I looked good too.

I believe I got my cycle this year, but I cannot remember...lol It was either 7th or 8th grade.

8th grade--Nothing notable here.

9th grade--I really started to become a woman finally. Dang I was a late bloomer I think or something. This was the first time when I finally was attracted to the opposite sex. It's odd because other girls in 6th grade had C cup breasts, having sex and were WAY more developed than me 3 years later....

I got contacts this year and no longer had ugly, hideous glasses I was hiding behind. I hate those things! Why do parents give their children ugly glasses?

10th grade--I started to date people very casually. My first BF broke my heart and dumped me after 2 weeks. (haha) Then I started dating his friend a few months later and we were together for a little while, but nothing of substance ever came out of it (we were what 15? lol). I remember struggling with my weight in this grade a little more, but I was a lot better choosing foods rather than buying an ice cream sandwich every day.

The summer going into 11th grade is when I decided to join marching band. I had to go to band camp for 2 weeks. I almost died every single day there. Seriously. No exaggeration at all. I felt so ill and would almost faint every damn day because it was SOO hot. The only thing that kept me going was carrying a water bottle on my shoulder and I would sip on it all day long. I brought a HUGE water cooler (yes a cooler) and then filled my water bottle up from that. I had to drink ICE cold water or I didn't want it. The water from the fountains was not cold enough... haha

11th grade--This is where my life starts to take a bad turn. Lots of TERRIBLE things happened to me this year. I had multiple people take advantage of me or treat me like dirt while dating them. The anorexia and ephedra abuse started after one of these events and it was my way of trying to gain control of my life. I know it. One boyfriend was very controlling who only ever wanted me to give him head/hand jobs. I was just a piece of meat to this jerk. When I tried to finally break up with him, he told me he was going to kill himself. /sigh That was really stressful and he made my life a living hell for a long time.

As this was going on, a person very close, whom I trusted took advantage of me in the worst way, which was more than I could handle. I would have rather dealt with the controlling, crazy, insane boyfriend.

I also started to go "goth", but not really. I wore regular clothes, but just wore a bunch of chains around my neck and dyed the front part of my hair blonde (like Rogue from Xmen). I think this was my way of telling people to leave me the hell alone. I also did this so that if someone actually wanted to date me, they'd have to accept me for me (with chains). haha


Most of 11th grade was me trying to deal with the severe lightheadedness I experienced on a daily basis. Walking to class was a chore. I'd feel like I was going to fall down all the time, but once I was sitting, I would always recover. I think I took the ephedra because it actually made me feel better since it raises blood pressure. There were a few nights I thought I was going to die from the intense headaches it gave me on occasion. They were so bad I would bang my head on the wall...

Eventually my periods went AWOL. I went into premature menopause from not eating. I did not get them back until my senior year and I cannot even fully remember when that happened. My friends thought I was pregnant as I was drinking and peeing so much. Nope..not pregnant. I was just really freaking messed up.

In June, I had to go to prom with one of my ex's because we had planned to go together while we were still dating. I was in very poor shape and had lost A LOT of weight (from not eating). It took all my energy to make it through that night and through the after prom (which I should have skipped).

Then one day I woke up and decided I no longer wanted to wear the chains. I dyed my hair very dark red and started to dress nice. I bought nicer jeans and shirts.

I think it was the summer into my 12th grade year that I nearly died at an amusement park. I seriously CANNOT remember if it was going into my senior year or if it was the summer after I graduated... At this amusement park, I fell down and blacked out. My entire body turned blue and I could not hear or see anything. I was looking at myself, looking at myself. I can still picture my face plastered against the storm drain on the asphalt.

We went to the first aid station and my BP was 60/40 and I was so very ill. The lady there said that I must be really dehydrated and to take it easy. I took like a 4 hour nap and did not even realize I had slept at all. Even after all that rest, I continued to faint over and over again and I called my parents to come get me. I was VERY thin then. I think I was fitting into a size 2 very easily.

12th grade (Senior Year)--I remember coming back to school and everyone was amazed by how much weight I had lost. Damn! I started to get A LOT of attention from guys, but I really wasn't that interested. I did not date many people during high school. More weird stuff happened to me though which seems to be inevitable these days. I had someone take advantage of me while I had been drinking a little bit too much vodka, which is why I now hate to drink at parties or in restaurants etc. I don't like to feel out of control.

No one wanted to take me to homecoming or prom. Sad huh? I made a shirt that said, "I need a homecoming date" , but had no takers. How pathetic! I begged someone I met at a Sevendust concert to come to my homecoming and he did. I never went to my prom because you weren't allowed to go solo! /sigh I was not ugly either, so I'm not sure why no one wanted to take me. I don't think I have any pictures uploaded on my computer of myself when I was in high school or I'd put one up here. I looked damn good for homecoming...haha

My health was NOT good. I was still going through periods where I'd eat and then not eat. This was really hard on my body and anytime it would get food, I'd put on so much weight it was not funny.

I hated myself so much during this year and would have break downs in the bathroom on a regular basis. Anytime I had any stress, I'd just collapse.

I did go on to win 1st place in the school's literature magazine for a poem I written. I was doing A LOT of writing during these past few years as I was struggling to understand why certain things happened to me in my life. Some of those poems are dark as hell and would make for absolutely amazing songs. Some day that will happen.

I finished school with a 3.8 GPA. I always did really well in school even with all these health problems.

After high school--My parents forced me to go to college, so I decided to just go to community college. I did not even try to get into any large colleges as I did not want to go. I did not fill out a SINGLE college app...haha

I started meeting new people from school/work and continued to date and get into more serious relationships. I always dated older guys, somehow thinking they were more mature...LOL Some of them were good, some of them were just flat-out stupid and some of them were bad, bad, bad. haha

I also started to work full time at a cell phone company. It was out of my comfort zone yet I really wanted to try it out. Even though my boss was a jerk, it was one of the best things I ever did. I didn't think I could succeed at it, but I absolutely kicked butt at selling phones. I was top in sales almost every month. I was making quite a bit of money considering I was single and still living at home. After stupid relationship, after stupid relationship, I met my to-be husband. All that dating finally worked as I met the man I was supposed to be with for the rest of my life! That is what I was looking for all along and I think that scared most of the men I dated away.

We got married very quickly.

My health started to get much worse. I could no longer work because standing up for long periods of time was next to impossible. Retail jobs were killing me and I quit working.

A few months after quitting work, my sister found out she had a malignant brain tumor and I went into a dark depression for months. I did not want to eat, talk or even leave the house. Only after she was given a good prognosis, did I come out of my shell. This had such a huge affect on me as I thought I was going to lose my sister. My sister and I had been through A LOT because we shared a room our entire lives from age 6 until I moved out when I got married at 19.

I believe that brings us to speed to where this blog started and it should give everyone a better understanding of how things progressed with my health. I've been sick for A LONG TIME. This is not something new which is why I think I have something seriously wrong with me. I am not old (25) and for someone to be sick as young as me, there has to be an explanation for all of this. I just haven't been able to figure it out just yet. One day..One day..

Beta-Blockers, Norepinephrine and POTS

The EP I saw for POTS (Postural orthostatic tachycardia syndrome) gave me a prescription for Metoprolol ER 25mg tabs. I haven't been taking them because I was a little afraid to. Well one day I just about had it and decided to try it.

It took about 30-45 minutes for it to kick in, but when it did I felt so much calmer. My heart chilled out and I could actually function. I was good for the next few days and didn't bother taking the beta-blocker.

There was another day where I took it and once again, it not only makes my heart feel better, but I feel much more relaxed overall.

Today I knew almost as soon as I woke up, it was going to be a bad "POTS" day. I took the beta blocker and once again, I feel sooooo much calmer. My husband asked me if I feel any different when I take it and I told him ABSOLUTELY. It not only calms my heart way down, but I just have a better generalized feeling about life. It's odd! Then he told me that beta-blockers block norepinephrine, which may be what is causing BOTH my POTS and the anxiety. HOLY COW! Maybe he is right.

My first google search leads me to a musician website where people take beta-blockers before performances, solo recitals, concerts etc. I've always been unable to handle stress NO MATTER WHAT dose of HC I've been on. When I used to play 1st and 2nd trumpet in the high school ensemble and jazz ensemble, I was always a wreck before performances especially when I had solos or a very difficult part to play! I still suffer from a lot of the symptoms most would call "low cortisol" symptoms, such as being startled easily, nausea, loss of appetite, tremors and a general "on the edge" feeling anytime I need to do something out of my comfort zone.

Maybe I have very high plasma levels of norepinephrine running through my body causing both this anxiety and the tachycardia upon standing. Hyperadrenergic one of the known causes of POTS, so this isn't too far off.

I'll need to do a bit more research into this, but I think it's rather interesting! Another thing I've noticed while on the beta-blocker is that I do not feel faint when I stand up even though my blood pressure has been dreadfully low lately. I have no idea why, but it is a rather interesting observation.

Maybe, just maybe there is hope?

I'm Disgusted

I'm just so disgusted with myself lately. The past 8 months? or so has been the worst roller coaster ride ever and I want off. I'm so sick of feeling like 265 different emotions every single day with no hope that this will ever end!

I have no friends, so this doesn't help and this is just too much for my husband to handle now. Who do I talk to? How do I communicate when I'm unable to?

I feel trapped and I have no idea how I'm going to make things better.

Started the cytomel (T3)

Yesterday I started the cytomel. My doctor said to take 5mcg, twice daily. /sigh I'm wondering if this is too much for it at all once. I might try taking just 5mcg tomorrow to see how I feel. It has definitely improved my mood, but I feel a bit out of sorts. My temps are perfect at 98.6, but my heart seems aggravated. Sadly I just can't use that as a reference though since my heart is normally quite pissed off to say it nicely. haha

Today though my heart seemed real bad. I was just walking around my house and it clocked in at 158. Then I actually wanted to get some stuff done around the house and it was 173. Basically for the rest of the day I've been sitting on my butt. I'm not proud of that, but it's the only thing that calms my heart. Right now my heart rate is 90, but if I stand up to do anything it will shoot up through the roof.

Even with my heart as insane as it is, I got our Christmas tree down. I'm not usually the type to rush in taking the decorations down. In fact, I think last year we kept our tree up well into January. So what made me take it down early? Our newest addition to the household, Vegas our 8 month old kitten! hahah Yesterday and today he finally managed to knock the tree completely over and it just looked like hell. Rather than fix it, we both decided it was just time to pack it up. Taking the tree down was quite hellish for me, but I survived!

One thing I want to note for future reference...lol Today my husband seems the most depressed I've seen for some time. I can tell when he's hiding it, but today he cannot even hide it. He's been spending a lot of time to himself just staring. /sadface I hope all is well with him.

What Should I Do Now?

It's no big secret that I've been rather frustrated these past months. Looking at my posts, I haven't exactly been in a good mood. Sorry about that folks. I tend to use this blog as a way to vent my frustrations because I don't have any close friends to talk to about all of this.

Emotionally I have been a wreck, but thanks to some EFT counseling I am doing much much better. I'm not 100% better, but day-to-day my anxiety has made a huge improvement. I also think getting off the Armour was helpful as it was converting to RT3, essentially making me more and more hypo. Anxiety and depression is a huge hypothyroid symptom.

Now that yet another year rolls around and I still have not found a fix for all of my problems, I need to stop and figure out what to do next. Do I just give up and realize that I will always have this heart problem? Do I just start to chelate again? Do I keep searching for more answers and risk the chance of being in the exact same spot next year at this time?

I thought going to this new EP was going to be "the breakthrough" like with so many other doctors and yet, here I am, looking back realizing how much of a waste it was. I emailed Dinet.org and told them I was not impressed at all with this doctor. He's no more a POTS expert than my regular primary care doctor. He was listed on their website as a doctor who dealt specifically with POTS.

Here's the direction I am heading next and this will likely be what I'll be dealing with into the next year.

What if the "POTS" was simply a mineral deficiency? I have been quite deficient in Vitamin D, ferritin and Vitamin B12 at certain points in my life. What if there are other more obscure mineral deficiencies that I haven't even tested. With all the natural doctors I've been to, none of them have done a comprehensive nutritional panel on me. Does anyone else see a problem with this?

My wonderful husband who spends HOURS researching for both of us, came across this very interesting post from a lady on Dinet.org. In this post, she was found to have a severe vitamin B1 deficiency. She was placed on a specific fat soluble type of vitamin B1 and noticed a huge increase in symptoms for the first few weeks. Then after that, she was practically CURED of POTS.

About 2 weeks ago I started using this cream and noticed a significant increase in my symptoms including gastrointestinal. I haven't felt this bad during a winter month for as long as I can remember. It got so bad, that I discontinued the cream about 4 days ago and oddly enough I am feeling a touch better... Now I am looking to get these vitamins tested, so I can decide what I need to do from here. Her post was very encouraging because she now holds a busy schedule/job.

I am now looking at yet ANOTHER DOCTOR that looks specifically at nutrition and also prescribes bioidentical HRT. That's about as good as it gets in my opinion. I can't give up. I'm only 25 years old and if I ever wish to have a family, I've got to get this heart rate under control.

So there you have it. We'll see what this year brings. 2009 was probably one of the hardest on me emotionally. Lots of up's and down's, but I made it through!

NOOO!!!!

Today is a sad day in my world. I got my catecholamines back and they tell me absolutely nothing.

Epinephrine, U, 24hr 4 (0-32)
Norepinephrine, U, 24hr 27 (0-140)
Dompaine, Ur, 24hr 241 (65-610)

Yeah, so I guess I'm just doomed for the rest of my life like this? I mean this is unf$%#ingbelieveable to me. I hate to swear, but I have no life when I'm like this and sadly winter hasn't made me any better.

No one wants to help me unless I'm willing to take xanax or adderall and I'll be DAMNED if I take those stupid pills.

Tested My Catecholamines

On Sunday I collected my urine for a full 24 hours to see what my catecholamines are doing. Is this why I have POTS (Postural orthostatic tachycardia syndrome) ?

There are several different types of POTS. One is when your catecholamines are high and one where they are low. I suspect that mine are high, but we'll just have to wait and see what the test shows. I doubt I'll see the results until after Christmas, but it may be as soon as tomorrow.

If the results do show something, I'll be contacting my EP. He's a total idiot and should have ordered these HIMSELF or collected them during the damn tilt table test like what most POTS "specialists" are supposed to do. The only reason why he was a "specialist" is because he's HEARD OF POTS. Whip dee doo! I'm going to contact Dinet.org and tell them that he did not do any diagnostic testing other than the tilt-table. I guess he's a good doctor if you don't mind taking prozac, xanax, and adderall! Then again if you were on all 3 of those drugs, I doubt you'd care about much of anything.

Stomach is Hurting WHY?

My stomach has been out of control. It always hurts anymore at least a little bit and I've been getting sick a lot. I'm always sick first thing in the morning and even sometimes like an hour afterward. This has been getting worse since going gluten free, egg free, strawberry, tomato and dairy-free (unless it's the raw milk).

This is what I ate today in no particular order:

Whole Chicken leg with no seasoning or sauce
1/2 cup of ground beef with salt
Rice with butter/salt
Mixed veggies with salt
Celery sticks with peanut butter
Enjoy Life chocolate chips hehehe
Chai tea (red tea) with 3 tbls of raw milk
1/2 cup of coffee
2 Oranges
1 banana

Where am I going wrong here? Why is my stomach hurting tonight. Why am I bloated?! It is really starting to drive me crazy because I just can't figure this out now. I had quite a few high carb foods today, but I just don't know. I'm not itchy tonight though, so go figure?! I'm thinking about doing the stool test from Enterolab to see what is going on with my stomach. They can test for a whole bunch of things. I just don't have the money for it, but when I do, I think it's a sure thing for me.

I think I have a lot of food allergies

I really think this is part of my problem and why I'm just not feeling any better no matter what I do. I know that there is something still bothering me because that DAMN itchiness on my legs has NEVER gone away. I am soo sick of it and it gets so bad sometimes that I have to take zyrtec. There is no way around it.

Looking at my food allergy results there is one thing that I haven't cut out yet and that is Baker's Yeast. My cousin, Chelle told me that having an allergy to Baker's Yeast can be just as bad as an allergy to wheat, gluten, eggs or even dairy. So I decided to start doing my own research and she is absolutely correct!

60-85% of people with Crohn's Disease will test positive to Baker's Yeast antibodies. The medical term for antibodies to Baker's Yeast is anti-Saccharomyces cerevisiae mannan antibodies. It is thought that your body starts to confuse your body's natural yeast for this Saccharomyces cerevisiae mannan and that's why you get Crohn's Diease...In addition to this scary find, one of the companies (Enterolab) that does genetic testing for Celiac also says that if you test positive for Baker's Yeast that there is high likelihood you have Crohn's Disease....Great so that's two reputable labs/medical studies that are saying the same thing. Obviously I need to stop eating Baker's Yeast. Now the interesting thing on my test is that I am NOT allergic to Brewer's Yeast. That makes things a lot easier as Brewer's Yeast and Baker's Yeast are used in a ton of foods.

Here's a list that includes BOTH brewers and baker's yeast foods.
http://www.allergy-details.com/106-foods-contain-yeast

Even though I'm already gluten free, I was still making GF bread for us that has yeast in it, so I need to cut that out for sure. I'll have to do some more research to see if I need to cut out all those foods on that list above. Even though I tested okay for Brewer's Yeast should I still cut it out too? I have no idea right now. I am still trying to sift through all this information.

Credit goes to this lovely little blog for a lot of the information in my post.
http://mrsedsresearchandrecipes.blogspot.com/2009/05/bakers-yeast-allergy-asca-lesser-known.html

Yep I Have RT3 Dominance

Well it is official now for sure. I have RT3 dominance even WITHOUT armour. NO wonder I felt so terrible on that crap. This is why doctors need to test this before you even go on Armour no matter what your numbers look like! If your doctor is not testing Reverse T3 before putting you on Armour, you need to set them straight so you don't suffer for months like I have.

There were my labs-
TSH 1.590 (0.450-4.50)
FT3 3.2 (2.0-4.4)
FT4 1.32 (0.82-1.77)

Now my numbers here don't look so bad. Most docs would send me on my way or say that a little bit of armour might do the trick....But look at my Reverse T3!

RT3 362 (90-350) High

...And there it is. My problem. My body can't convert it's own T4 into T3 so how can I expect it to convert Armour? Essentially I am functionally Hypothyroid. My thyroid is making enough hormone, but a lot of RT3 is bound in the T3 receptor sites, which does not allow T3 into the receptors to do their job. I am running around hypothyroid WITH thyroid hormone in my blood! The treatment for this is to go on T3 only. Every doctor has their own method.

This doctor wants me to start off with 10mcg of T3/day, dosing it 5mcg in the AM, then 5mcg at dinner. I am supposed to work my way up pretty quickly to 20mcg, dosing it 10mcg in the AM, then 10mcg at dinner time. I have not started this yet, but hope to do so soon.

I'll be sure to keep everyone posted!

Lots of changes

No longer seeing that lady doctor. We made the journey back out to see the other doctor and got back today. I am pretty pleased with my treatment and have realized that no one is ever going to fix my heart problem. NO ONE. I can't get too upset about it and will just have to learn to deal with it for the rest of my life.

The EP told me to try a small dose of a beta blocker, so that's the next step. If this doesn't work, then I really am out of options and am SOL.

The hormone doctor has ordered me a whole bunch of new labs to get done since I just stopped the armour. I hate armour. It did absolutely nothing but make me feel even worse. I had daily headaches and just felt so blah on it. I don't know what my doc will do but I think I want to try a small dose of cytomel to see what happens.

I also saw another hormone doctor I used to see a long time ago and he thinks I have a reverse T3 problem. He does the labs a little different than most people and uses T3 rather than FT3 to calculate the ratio. I don't know who the hell is right anymore because everyone has their own unique method to this stuff!

I had my sex hormones tested and while the numbers look good, some people might say that I am "estrogen dominant" because my ratio isn't high enough. My hormone doctor doesn't like to see estrogen any lower than 150 and mine was 198. He said my progesterone was excellent at 19.9. I dunno about these ratio things...

So now I just continue on the HC and DHEA and get these new labs done to see what my thyroid is doing on its own. I've never had my RT3 checked when not on armour, so it will be interesting to see nonetheless.

That's all for now.

New Doc Is Fired

I really thought that I'd be able to get some help from the new doctor. But after the fiasco they put me through yesterday and with how poorly the phone consult went, I am just moving on once again. There's no reason to waste my time with a doc who won't do anything for 6 weeks in between phone calls. She's not changing ANYTHING. I mean what the heck?

Yesterday I was supposed to have my phone consult and they called me 45 minutes late telling me they were going to be late. Oh really, you think? You are already 45 minutes late. They said it would be another 45 minutes. Well another HOUR goes by and I actually had plans last night and could not sit around any longer, so I canceled on them. They didn't seem apologetic or anything.

Well I get a phone call today out of the blue and it's the doctor. She's extremely difficult to talk to on the phone. There were moments of complete silence and I wasn't sure if I was supposed to say something or not. /shrug Basically she is blaming everything that is wrong with me on Epstein-Barr Virus. Oh yes. I love these psychotic doctors who do this. You give them one thing they can blame EVERYTHING on and that's what they do. Even though my antibodies for a recent infection are NEGATIVE, she told me that that is my problem and to take supplements to "knock the virus out". Uh hello I got EBV when I was 17, I don't think there's any knocking this thing out of me. In fact it's not possible because it stays in your body forever. The fact that my present antibodies were below the lowest detectable titer tells me that's really good. I was actually pretty happy to see that, but that's not enough for this lady.

She said that the thyroid labs were weird because "Oh did you take your thyroid meds before the test". Yeah dummy I told you that in the office and you said that's WHAT YOUR OFFICE RECOMMENDS. I mean am I going insane here or what!? My GOODNESS.

So I just nodded and agreed with everything she said because you cannot have a discussion with her on the phone. She is not a phone person at all. Basically she left it as I change absolutely nothing, I know nothing about what my thyroid is doing now and that my TSH is too low. [Oh great you are one of those types of doctors? Are you kidding me?]. I told her that my TSH has never been reliable and that we cannot go by that since it's been NON-DETECTABLE when I was not on any medication.

To say that today's phone consult went bad is a serious understatement. I'll probably just call them in a few weeks and say that I wasn't too happy and that's that. Why spend money on a doctor that is so difficult to work with? The phone conversation was so awkward and rigid.

I didn't get these feelings from her in the office, so that just shows you the first visit with a doc means nothing. Great I get to stay on 1 grain of armour for another 6 weeks! It's already been 6 weeks at this dose and it's just unbelievable to me. This lady was recommended by a very well-known doc I won't even mention here. I hope that my husband has better luck.

The Tilt-Table Test

Today I had my tilt-table test and it was quite an experience. I was a little nervous for it for several reasons. 1). I was hoping that my heart would "do it's thang" even though I was nervous. 2). I was afraid of going into an adrenal crisis during the test 3). I hate hospitals!

I got there. Got registered and had some blood taken. Just an electrolyte panel and a pregnancy test in case they wanted to use nitroglycerin during the tilt-table exam.

Then I got all hooked up with a saline IV and was strapped to a table that looked like a torture device. All of the nurses were REALLY friendly and none of them were crabby or complaining which was great. I HATE IT when nurses complain to me about other patients.

As soon as the nurse tilted me up, I was like...whoa holy moly! I immediately felt the blood rush from my head. They raised me up to 70 degrees and kept me there for about 20 minutes. I had to tell them exactly what I was feeling at every given moment. The first few minutes were terrible. I felt very lightheaded, dizzy, near faint, but then I normalized. That feeling went away (for the most part) yet my heart rate just kept climbing. I could not believe it! And all this time I thought my tachycardia was because of low blood pressure. There were a few moments where I'd feel faint again, but then I'd be okay.

I asked the nurse what my pulse was running (I could hear the beeps) and he said it was at about 134. Wow! That is simply me just being tilted up. Not walking around or anything.

The doctor came in and even he was pretty shocked with the response. Then he decided to lay me back down supine and give 1/2 a nitroglycerin tab under the tongue. They tilted me back up and all hell broke loose. I felt TERRIBLE. My vision started to get really fuzzy. I felt faint, dizzy, nauseous. They didn't keep me tilted for long and I was not complaining. My heart was beating so very fast and I just wanted to lay down.

During the middle of it, I told them I felt this extreme "terribleness". The nurse kind of laughed at that word I made up at the moment. When my heart starts to go this fast, I told them this is usually when I lay down and don't get up for a while. I wanted nothing more than to unstrap myself from that stupid table and lay down on the nearest bed. haha My heart hit 178 bp from the combination of nitroglyercin and simply being tilted up at a 70 degree angle.

This is what I have to deal with on a daily basis.

I have no answers right now, but it was interesting to see the vital signs during the test. I'll get a more official report later on. The nice nurse was kind enough to print me the vital signs, but said she wasn't allowed to give more than that. That's really all I care about to be honest. I guess it would be good to know if I had any PVC's or other abnormalities, but I didn't feel any.

These are the vital signs. I'll try to put this in an easy to read format for all of you. They took vitals every minute.

Start of Test (SUPINE)==> BP 112/65 HR 82
Tilting==> Each BP/HR represents 1 minute of tilting unless otherwise stated
BP 130/83 HR 85
BP 130/97 HR 112
BP -------- HR 117
BP 137/88 HR 117
BP -------- HR 120
BP 117/71 HR 121
BP -------- HR 116
BP 112/90 HR 119
BP -------- HR 120
BP 110/80 HR 124
BP -------- HR 125
BP 128/88 HR 126
BP -------- HR 133
BP -------- HR 133
BP 123/83 HR 133
BP 123/80 HR 133
BP -------- HR 136
BP 118/81 HR 134
BP -------- HR 134
BP 128/90 HR 147
BP -------- HR 143
BP 129/80 HR 142
BP -------- HR 137
Started tilting back down for the Nitroglycerin==>
BP 128/76 HR 113
BP -------- HR 109
Tilting Back Up With Nitroglycerin==>
BP 124/65 HR 145
BP 97/55 HR 164
BP 108/70 HR 169
BP 99/49 HR 175
BP 95/58 HR 175
BP 140/80 HR 173
Starting Tilting me back down===>
BP 140/77 HR 137
BP -------- HR 113
Test Complete. PHEW

Okay I'm Giving This Diet A Go!

I hate to even call it a diet because it is not. It's another lifestyle change.

My husband is on board with me, so that makes it SOOOO much easier!

Here are the foods we will be excluding for the next few weeks to see if I feel any different. I am only excluding foods that were classified as a 2 or 3.

Egg White/Yolk
Gluten
Milk
Strawberry
Tomato
Wheat
Yogurt

Almond
Kidney Bean
Lima Bean
Barley

I can eat cheese, almond, kidney bean, lima bean and barley (no response), but my husband's allergy test showed his response pretty high. Therefore I'm just excluding it from my diet to remove any possible contamination.

That means we have to throw out all opened jars. Jellies, mustard, relish etc. There is most definitely pieces of wheat or gluten in ALL of those jars. I think I'm going to throw out our collander too and get a new one just to be safe. Although I'm not even sure why I'd need to use it if we aren't eating pasta.

No tomatoes really hits me hard. I can't make stuffed peppers anymore! I can't put tomatoes on chicken breasts to spice it up a bit... I can't eat any type of pasta sauce anymore. AHHH! I can't even put tomatoes on my salads and a lot of the canned beans I used to buy have tomatoes in them. There goes a lot of meals we used to eat on a regular basis.

I had a metabolic panel done on Saturday and these are the results!

Glucose 82 (65-99)
BUN 12 (5-26)
Creatinine 0.82 (0.57-1.00)
GFR >59 (>59)
Bun/Creat Ratio 15 (8-27)
Sodium 138 (135-145)
Potassium 4.7 (3.5-5.2) WOOHOO! The new diet and supping IS working!
Chloride 103 (97-108)
Carbon Dioxide 24 (20-32)
Calcium 9.6 (8.5-10.6)
Protein 6.8 (6-8.5)
Albumin 4.6 (3.5-5.5)
Globulin 2.2 (1.5-4.5)
A/G Ratio 2.1 (1.1-2.5)
Bilirubin 0.3 (0.1-1.2)
Alk Phos 53 (25-150)
AST 17 (0-40)
ALT 18 (0-40)

Sadly this tells me that my heart problem IS NOT electrolytes.

Tomorrow is the Tilt-Table test!

More Thyroid Labs

Here are the labs from another hormone doctor. Yes I have a few on-hand...LOL

These labs make even less sense to me. They were done almost exactly 2 weeks later and look at the huge difference.

Note these are NOT free thyroid labs. This doctor doesn't check frees for whatever dumb reason.
T4 6.0 (4.5-12.0)
T3 92 (83-200)
Reverse T3 233 (90-350)

I've never had a Total T3 checked before, so I'm not sure exactly how to interpret this. However usually you want your Free T3 to be near the top of the range and I'm really close to the bottom of the range here. The doctor that ordered this, I'm not sure I am actually going to schedule to see him. I dunno. I'm torn about the whole idea. He has helped me in the past, but money is getting tight with all these medical expenses.

Vitamin D 21.1 (32-100) LOW
Ferritin 33 (10-291) Too low

Taking armour has made both of these tank. I am now supping these hardcore to get them up higher. Ferritin is supposed to be at like 70-90 in order to use thyroid meds properly. /sigh

Glucose 85 (65-99)
BUN 8 (5-26)
Ceratinine 0.80 (0.57-1.00)
eGFR >59 (>59)
BUN/Creat ratio 10 (8-27)
Sodium 141 (135-145)
Potassium 3.7 (3.5-5.2)
Chloride 106 (97-108)
Carbon Dioxide 21 (20-32)
Calcium 9.7 (8.5-10.6)

Got My Thyroid Labs Back

Today I got the labs back from the doctor I saw in Michigan. I have no idea what in the hell is going on with my body.

TSH 0.25 (0.40-4.50)
FT4 0.8 (0.8-1.8)
FT3 752 (230-420) Oh my goodness!
Reverse T3 19 (11-32)

Iron 65 (45-175)
Ferritin 50 (10-291)
Glucose 88 (65-99)
Insulin 14 (<17)
Potassium 4.1 (3.5-5.3) That potassium is finally coming up!

I told the doc to throw in a lipid panel because I've NEVER had one done before.
Total Cholesterol 190 (125-200)
HDL 90 (>= 46)
Triglycerides 44 (<150)
LDL-Cholesterol 91 (<130)
Chol/HDLC ratio 2.1 (<=5.0)

I had EBV at 17, but this doctor wanted to check the antibodies again.

Epstein Barr Virus Early Antigen D AB (IGG) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGM) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGG) 4.53 HIGH
Epstein Barr Virus (EBNA) Antibody (IGG) >5.00 HIGH

Interpretation: Suggestive of past EBV infection.

So...I don't know what is going on with my body. I think it's just really ticked off! On this trip I remember feeling SO tired and didn't feel hyper at all. Apparently though with this lab, I don't know when I'm hyper or hypo. That's been made pretty clear to me now.

I also got my food allergy test back....HAHA Sadly I doubt I'll be cutting back on these foods. Some of the foods that showed are absolutely ridiculous. I have no idea what I'd even eat. Here's what came back with a response.

Blueberry (low)
Broccoli (low)
Cottage Cheese (low)
Corn (low)
Egg Whites (Medium)
Egg Yolks (Very high)
Garlic (low)
Gluten (Medium)
Lemon (low)
Lettuce!! (low)
Malt (low)
Cow's Milk (Very high)
Black Pepper!! (low)
Sweet Potato (low)
White Potato (low)
Soybean (low)
Strawberry!! (Medium)
Tomato!! (Medium)
Wheat (High)
Baker's Yeast! (low)
Yogurt (Medium

I went through every single food we eat in this house and I'm getting at least 1 of these allergens at EVERY meal. I use black pepper, tomatoes, garlic and eat salads a lot. If I can't eat salad then what the heck am I supposed to do? Even some of the gluten free alternatives would be an issue because of corn. These results really just pissed me off more than anything.

My Eyes and Current Condition

I really need to keep up with my blog. I am sorry to all of you who are watching this.

Okay first off my eyes are bad again. I read through the last few months and I don't think I ever really updated what happened with my eyes. The Posterior Vitreous in my left eye did finally detach itself from the retina and the right eye is "impending detachment". Now this is not as serious as a retinal detachment as it requires no surgery, but once this happens you are at VERY high risk for retinal detachment. If I hit my head really hard or lifted something very heavy, I might cause it to tear or completely detach!

I've been getting serious pain in my left eye and there are more floaters. I just had my 6th month(?) check up about 2 1/2 weeks ago and he said everything was good. Well 2 1/2 weeks ago I wasn't having these symptoms and some of the floaters at night are glowing! Yes glowing! I'm going to play it by ear or until the pain gets so bad that I just can't take it anymore. All I know is that when I look at people's faces, there is a scary looking floater that wasn't there before. I'd try to draw a picture of it, but I don't even know how to begin. The floaters have been REALLY noticable. For a while there I actually forgot about them, but they are more web-like and much darker.

Just for records sake, here are my current meds:
25mg HC
1 grain of Armour
0 Florinef
2 Bio-identical Aldosterone caps
6.25 mg of DHEA
20-40 MEQ of RX Potassium
1-2 sprays of DDAVP
Midodrine (oh my goodness)

I am so glad it is getting colder outside! YES. I can actually live for now. Today for some unknown reason was pretty bad BP/heart day which is why I took the midodrine. Sadly it didn't do anything. My BP sitting was 88/75 and my heart rate was 150...LOL I am glad that I can laugh at it now because earlier I was pretty ticked off.

My husband's health has been so poor that I haven't really been taking care of myself. lol It's funny how that happens. In some ways, he is much worse than me. It's hard having 2 sick people in the house now and I find myself "annoyed" because we both can't get stuff done around the house. There are so many things that need done right now, it's not even funny. We need to get the garaged cleared out so we can park the car in there for the winter. Just thinking about all the lifting, bending up and down makes me want to cry. I'm going to be so ill.

About a month ago we drove out to Michigan to see a new doctor for my husband. I also saw another doctor to get a 2nd opinion on everything. At this point nothing has been done because we were waiting on new blood work and a food allergy test. I have a VOV (virtual office visit) with her on October 14th. I'll get to tell her all about that lovely Tilt-table test...haha We still might have to go back out to see the OTHER doctor. /sigh

Since it's getting colder outside, I've been feeling much better. I still have bad days (like today). I might try to do a round of chelation just to see what happens to me. Since I'm on HC, I bet they go much smoother.

In addition to all this, I am trying to have more of social life. I have been catching up with some of my old friends. I realize that through all this health nightmare, I've neglected to let myself have a good time. I've been fighting to stay alive for nearly 4 years. Now that I feel a little better, I need to take advantage of this time.

Midodrine Is A Nightmare

Taking midodrine is absolutely horrific. For those of you who don't know what this drug does, it's a vasopressor and is supposed to raise your blood pressure. My Electrophysiologist (EP)wanted me to try this out for a while to see if it helped with my postural orthostatic tachycardia. Well it's some of the nastiest stuff. Within 35 minutes of taking it, I feel like bugs are crawling on my skin. My hair feels like it's going to lift off my scalp and it makes me extremely anxious and nervous. And the worst part? It doesn't work at all.

I can see why there was such a large early drop out rate in the clinical studies. I wouldn't have made it through one either.

On the 13, I go for my Tilt-Table Test. I'll be sure to let everyone know how hellish it was. I kind of hope that I pass out on the table.