I've Been So Ill Feeling

I don't know what is happening, but I've been SOO ill.


I've been researching non-stop since I got the NutrEval test back. I think I need to further pursue a possible mitochondrial disorder, but just don't have the funds to do it. For now I figured I'd just start on some of the supplements suggested and see how I do.

Well something that I started taking is making me feel terrible! I've never experienced this feeling before. I've had chronic, constant nausea. I feel hungry, but as soon as I start to cook, I can't possibly imagine actually eating the food. I've been making myself eat. My sitting heart rates are way up. I was tachying away at 122 while sitting at my computer chair. OMG!

Yesterday it was beautiful outside, cool with low humidity and I nearly collapsed at the park while taking a gentle stroll. Normally where my HR is like 118, I clocked in at 152, with shortness of breath and felt like hell.

Here's what I started taking:
Fish oil
l-carnitine
P5p (B6)
SAM-e

Today I took nothing, so we'll see how I do. I feel like a piece of shit today. Worthless. What the hell am I even doing here. I can't do anything. My sister wants me to help her buy some trellises from the store and I'll have to tell her I can't do it. What a worthless piece of shit I am. Seriously.

I'm sick of this.

Too Much Norepinephrine!

I got another call from Cleveland Clinic today. It was the nurse and she said she wanted to get clarification of my catecholamine results since she was not sure how to read them to me.

Supine norepinephrine was 125. She said this was within normal range.
Standing norepinephrine (10 minutes into tilt-test) was 613. That was out of range.

That's like an increase by 5X's. The nurse said that is way way too high. Normal is doubling, so around 250. The doctor says that is likely why my heart rates are soo incredibly high when I am standing, yet what doesn't make sense is why does my BP not go up? Norepinephrine increases blood pressure.

I asked her about the epinephrine and she said the doctor had nothing to say about it. So I have to keep waiting for the report in the mail until I can actually SEE the results. Who knows how long that will be...3 weeks and counting...

Preliminary Catecholamine Results

There's been some sort of hold up on my report from Cleveland Clinic...I asked the nurse about my catecholamine levels.

She said that my upright norepinephrine levels were high at 613.
She also said my epinephrine levels were below detectable limits <10.

Not sure what all that means right now and I'm not going to come to any conclusions until I see them for myself.

In crappy news, the floaters in my eyes have been terrible. I hate to even call them floaters because they are not dark spots. They are very bright bursts of lights that are either dark (on light objects) or bright (on dark objects). Very very similar to an after image. .They are very distracting and are in the center of my vision...

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