Debbie Downer for Being Sick of Being Sick?

Fall is definitely here! The leaves have already been changing! :) I woke up today and it was actually cold and I needed to get a jacket. :)  Usually I feel better in winter, but last winter was really rough on me. I got strep and then erythema nodosum....Ouch. I hope I do not have a repeat of that.

I am already noticing that my heart has been racing a lot more. I have been getting periods where it just takes off for no reason. It has me concerned but what can I do about it? It's not like I can flip a switch and be better... I have been getting worse and worse this year despite my efforts with supplements, natural treatments, detoxes and rx drugs. Nothing has been working...

In real life, I don't like to talk about my problems with people because no one wants to hear things like this...What's the point when there is no end in sight? It's not like there will be a cure for POTS in 5, 10, 15 or even 20 years. As I get sicker, it is becoming increasingly harder to cope with. Most people are only interested in hearing about illness for a short time, but when an illness has been going on for years, they don't really want to hear about it anymore. You are old news and annoying.

Because of that, Facebook and this blog are the only places where I can vent and talk about what I am feeling with complete honesty.

On FB the other day I was accused of no longer listening to God's word and that I must have stopped going to church because I was being a debbie downer in my posts...Huh?...This does not make any sense at all to me. I am NOT about to be condemned for feeling and living sick. I do not subscribe to any theology that blames sick people for being sick. God does not give us sickness to teach us lessons.

Some people really need to get a grip on themselves. You see someone hurting and in sickness and all you have to offer is condemnation and some lesson on the Devil? How about having some compassion, love or even offering to pray for them?

On FB, I usually post random things about health, cats, weather, God, songs, etc. The last few weeks I have been posting links to some interesting threads on DINET that I could relate to and I shared some stories for Invisible Illness week. I normally don't post about stuff like that, but I thought there were some good things out there. I like posting about the emotional struggles we face when one suffers from a chronic illness.

Oh and I've also shared this amazing KittenCam on Youtube. OH MY!! Check it out. You will be addicted. :)

One of my "debbie downer" status updates was written after going to Kohl's and suffering with terrible symptoms.

I really needed some jeans. I haven't bought a single pair of jeans for more than 3 years. We are going to a Christian healing meeting and conference coming up in October and I realized I did not have enough clothes to wear to a conference for 3 days...haha! Normally I wear the same clothes over and over again because I don't make public appearances very often and I'm not seeing the same people. I figured showing up in the same old, worn pants might be a bit weird.

I hate shopping because of my health problems. I can't even remember the last time I went to a mall. I think it's been about 3-4 years. The only shopping I do is grocery and necessity shopping like getting cat litter, cat food, prescriptions, toilet paper etc. You get the idea. I don't go on day long trips where I come home with bags and bags of jeans, shirts, shoes and other stuff. All that walking, stooping down, reaching up for items, standing in line is awful.

Before we got to Kohl's I looked online to see which pants might work, so I knew where to start... There was no way I could walk around Kohl's, trying everything on I could find, so I had to narrow it down to 2 or 3 styles. That's all my body can handle.

Trying on and putting on clothes has always been a major trigger for POTS. When I get dressed in the morning, it takes all of my effort not to collapse. It's not that my BP drops, but I feel like the life within me begins to fade away.

So I start trying on jeans and immediately knew this was not working out well. I felt terrible. My heart was in the 170's. I had to rest on one of their mannequin displays. ;) I had shortness of breath, began to tremble, shake, sweat profusely, felt wired and thirsty yet had to pee all at the same time... I could not do any fine motor movements at all. Texting on my phone was impossible. I kept smashing like 5 keys together. Everything was so unsteady. The first 2 pairs of pants I had tried on were a bust, so I had to keep pushing through and looking. I started to slouch, sighed a lot and was even dragging my feet as I walked. I looked sweaty in the face as if I had been running a marathon. I have to believe marathon runners feel better than this because I don't think they would keep doing them otherwise! HAHA!

I finally did find pants that I liked, but I was too sick to try them on and compare, so I just bought them. I got home and realize I probably needed to try the smaller size and compare...NOO I have to go back now!?! I was considering of bringing my video camera along next time to show people how much I suffer while trying to do normal things. I dunno if Kohl's would allow it, but I think I'm gonna try.

So after that entire experience, yes I made a FB status update that said,
"I went to Kohls today to get some jeans and I felt terrible. Made me realize just how sick I really am. :("

I can't pretend I don't have POTS! When someone suggests something along those lines, I have to assume they don't believe you are really that sick. Doesn't that already mean I'm doing a good job at pretending? lol I also feel like you cannot possible be feeling compassion for what I am going through. No one would ever tell someone with cancer to pretend they did not have cancer. No one would ever tell a blind person to just think more positively, so he might be able to see! That is completely absurd....

After coming home from Kohl's, I was wrecked for the day. I had massive head pressure and a headache that did not go away until I went to bed that night.

One good thing did come out of it, as I was walking around, feeling dreadful, I started to have flashbacks to times in my youth where I felt the same exact way. It was as if I was being reminded that I have been sick for a very long time as early as age 5. My mom used to do day long trips to malls and I hated it. I would lie down on the ground, cry, scream and throw fits.  I thought I was just a brat, but walking around Kohl's the other day, I knew it was just POTS showing itself...

I'm not entirely sure where to leave this post, but for the past 7 years I have been doing the mental gymnastics to keep myself going. The 5 years before that, that I graduated from high school, went to college and worked full time. I'm not a quitter. I'm not someone who just gives up and pouts. The reason I'm not in a wheelchair or lying around in bed all day looking more sick is because of my willpower.  I struggle with POTS in every aspect of my life and have made as much good out of it as I can. Is it wrong to want more and be upset with where I am right now? I don't think so.

For 12 years doctors have told me I was faking, crazy, lazy, just anxious,"too stressed", that I needed to get a job, was a drug addict, needed to just start having babies and all of these horrible things. To then have a friend tell me that I was letting the Devil win by having debbie downer posts, it is really not very caring or compassionate at all. I can't just pretend POTS away...Don't you think I would have done that, oh I dunno, like 5 years ago when I started this blog? lol

My hope for healing and recovery is with God. I know that he is my Healer. He has already shown me with what happened with my cousin was not my fault. God is healing me right now in ways I cannot even explain here. I believe that the physical healing will happen too. And when God finally takes this illness away from me, then Glory be to Him. No one will be able to stop me, from shouting it from the rooftops!

Graphs of Heart Rates During Tilt Table Tests

I wanted to share with all of you a graph of my vitals during my TTT's. I'm not sure how to get BP's to work, but if I do, then I'll post those alongside the HR's so you can see how that correlates (or does not correlate in my case...hehe).

Cleveland Clinic

UPMC Passavant

At the place where I have marked Nitro, they lowered me back down briefly and gave me half a sublingual nitro pill. I thought it was going to kill me. I will never ever let any doctor give me that drug again! Ugh!

Heat Intolerance: It's Too Darn Hot!

I made a video talking about some of my struggles with it.


Admittedly I was doing a lot better in this video I made 8 days ago. Things got bad really quickly for me.

First Walk of the Season!

It was still chilly yesterday but my husband and I went for our first walk of the season.  It was beautiful because there was still ice on the lake.  I should have brought my camera with me, but did not think about it at all. 

We did not walk the full loop, but did about half way around and I decided it was better to take it easy.  Since it was our first walk, we are out of practice and I didn't want to collapse after ward.  haha!

None of my heart monitor watches work anymore, so I could not check my heart. Sometimes I think it is better that way... We walked up a steep hill and my heart immediately went insane.  Probably 140's, so I know this summer is going to be rough. 

I am so nervous about tomorrow (oral surgeon).  AHH!!

Still Nothing From Cleveland Clinic

This really is just unbelievable to me.

I called on Thursday and got the secretary. I thought, "oh good" just the person that I've been playing phone tag with. Well sort of. To play tag you need the other person to try calling YOU back, which wasn't happening. I told her that I was trying to be as patient as one can be, but I've been waiting and calling for the past 6 weeks asking WHEN I'd get my report. 5 weeks ago I was told it would be finalized the next day and then sent out probably over the weekend. Now I call and I'm told the same thing each and every week. I want an answer NOW as to when my report will be in my hands...

She looks me up in the system. "oh..um...I guess there must have been some kind of oversight. I don't know why your report wasn't finalized". I told her that I've been told that same thing for the past 4 weeks and nothing has been done about it. "I will have the nurse call you when it is finalized". Okay so when should I expect the report to be in my hands, so that I know when to call and complain again. "I don't know" Well here it is Monday and no report, no phone call. NOTHING. What in the HELL does one have to do to get a damn report from Cleveland Clinic. This is not acceptable.

I hate to burn bridges, but I don't think I ever want to go back there. Just awful.

So...tomorrow I am calling again. I hope I get the secretary, so I can tell her that whatever it is they are doing to get the report finalized ISN'T working. I want my chart put ON TOP of the pile and it stay there until the doctor signs off on it. Period. If this doesn't work, then I'll have to call the cleveland clinic ombudsman to step in for me.

Still Not Doing Well

I was really hoping to see some improvement, but I am really bad...again. I felt decent for like 3 days as far as mood goes. But my heart has just been terrible.

I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh

I felt completely out of my mind like I was watching myself watch myself.

Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.

My eye floaters/bright things are all back, so this has to be related to me feeling terrible.

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.

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.

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

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...

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.

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!

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.

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

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.