Medication Frustration

[SomethingClever]

New to the forum and wanted to get your insights on an ongoing point of frustration for me. I see no way to keep this from being long winded, so I apologize in advance. I'll start with my history and then give you a break where my actual question is, so you may feel free to skip to that.

I'm a 29 year old male. Symptoms started unbeknownst to me a long time ago. Little things like feeling faint during a really hot shower or being completely exhausted after playing basketball seemed like no big deal but make more sense is hindsight.

Approximately 7 years ago I started having arm pain and tachycardia. Thought I was having a heart attack. Spent a night in hospital and was told I was fine and released. Continued to feel like garbage off and on. Bouts of dizziness. Tachycardia while trying to fall asleep. After seeing a cardiologist and being cleared was told it was anxiety. Went on paxil for a few months. Felt completely better. Stopped the meds and continued on with my life. No more dizziness. No more pounding heart. Had a job in retail sales where I was on my feet 8 hours a day and had no problems.

Then a little more than years ago things started creeping up. I passed out on a bus on hot summer day here in Chicago. Wrote it off as too little water, too much heat. After I started noticing I could be on my feet as long as I used to without needing water and a break. I started periodically feeling "off", pre-syncopetic maybe and would find that drinking a Gatorade or eating a candy bar would make me feel better. I felt more sensitive to light. Started having tachycardia randomly at work (I'd since taken a sitting all day at a desk job), especially after going to the bathroom. I was eating a twix bar every day at 3 PM to get through the work day or getting off the bus stops early because I needed a candy bar from a gas station. Noticed after walking for long periods i didn't feel tired. I felt sick. I was starting to become very heat intolerant as well.

Went to the doctor, ruled out diabetes and thyroid problems. Suggested that it might be anxiety. Went on Celexa and felt no better.

Saw a cardiologist who suggested vasovagal syncope. Said to eat more salt. Tried Florinef for awhile. Didn't seem to do anything so stopped that.

Saw and neuro and was diagnosed with Charcot Marie Tooth Type 1A. Had a blood test which confirmed the diagnosis. Mystery solved, I thought. Stopped taking the celexa, felt worse. Went back on it, felt a little better.

For the next year plus, things weren't actually that bad. There were things I couldn't do, but I had a good grasp on managing my symptoms. Don't over do it. Rest when you need to. Exercise to keep your strength.

Would get tachycardia at work sometimes, but would fight through it until it went away.

I found that alcohol almost completely eliminated my symptoms. I could be on my feet for hours with no problems. And as long as the rest of the time I didn't have to be on my feet, I was fine. Starting seeing a neurologist. Complained about the heat intolerance. Had an autonomic study with tilt table and sweat test that came back normal.

Fast forward that year plus and suddenly those tricks to manage my symptoms weren't working as well. Eating a candy bar or salty snack didn't necessarily relieve my symptoms. Couldn't sit through an hour-long meeting without guzzling water. Tight clothing, especially having to wear a shirt and tie were starting to bother me. Even more heat intolerant. Got to the point where I was having to go home from work more often because I was feeling like garbage.

Complained to my primary care that I felt like my quality of life was going way down and that aside from possibly muscle fatigue, none of my symptoms seemed to jive with my existing diagnosis. He got me into Mayo last summer. They ruled out many more things. Did a tilt table there and was given a diagnosis of POTS. Was told exercise, more salt and maybe increased celexa. I did all three and started to feel better. (Subsequently went to one of the nation's leading experts on my other diagnosis, Charcot Marie Tooth, who after doing some testing told me I had one of the more mild cases he'd ever seen, was stronger than nearly all his patients, and concurred that something else was causing my symptoms.)

Built up stamina on my recumbent bike and felt like getting through the works days were a little easier. Seemed like I could be on my feet a little longer. Most importantly, felt like I was on the right path and making progress.

Then this winter I crashed. Nearly passed out in line at the Potbelly's. Worse, felt really faint behind the wheel driving back from my parent's house for Christmas. (only a 30 minute drive. in the past, I'd needed to crank the AC, even in the winter, and keep drinking water, but that would be enough to get me home.)

Went to a work conference where I was only about to sit through about one hour long presentation. Stayed in my hotel room the rest of the time. But again, at the dinner in the evening had a few glasses of wine and was suddenly able to be up and about socializing with relatively no issues.

When I got back, I found myself struggling to make it through the work day to the point that I had to convince my bosses that I'd be more productive working from home. (Fortunately they're awesome, have seen me dealing with this stuff for a long time and have up to this point been on board with that plan.) For a good few weeks I barely left the house.

Found a doctor here in Chicago recommended on this site and started seeing her in February. She diagnosed me with orthostatic hypotension and started me on midodrine. That seemed to get rid of the extreme lows, and while I wasn't feeling any better in my day to day life, I wasn't getting to the point of feeling like I was going to faint.

After seeing her for a few months with no real changes as we upped the midodrine, I asked if switching from Celexa to Paxil might be worth trying since it had seemingly helped me recover from similar symptoms years earlier. While weening off to try the switch, I started feeling a little better. At 10mg with the 2.5 midodrine three times I day I felt like I was actually building up a little stamina again. Drank on my birthday and was able to be with friends for 10 hours. Between standing and sitting, being social for that length of time was a huge accomplishment for me.

In going completely off the celexa, started feeling way more anxious and felt like the strides I was making had gone away. After getting on the paxil, the anxiety subsided but the symptom relief didn't follow with it.

Went back to the doctor she recommended adding florinef.

QUESTIONS

So that lengthy exchange takes me to yesterday. Been on florinef (.05 mg a day) for a week. Had planned to go out with friends, as it had finally cooled off here in Chicago and seemed like a day I could actually handle being out. Had my customary pre going out beer, which really seems to get my body ready to deal with the extra stimuli of being out. Took my bp, as I've started doing at home to try to notice what it looks like when I'm feeling one way or another, and it was 90/48. Immediately felt faint and had to lie down. Had to stay home instead of doing anything.

So my frustrations and my questions.

1) Has anyone had an equally bad reaction with florinef and alcohol? Or could something else be the culprit? I mean, I didn't really felt faint until I saw the BP, so maybe that triggered me. Once I laid down, it went back to 133/80.

2) What is the point in trying new meds, if all they do is stop me from being able to use the one drug that actually gives me some relief? That's my biggest frustration. Shouldn't the fact that alcohol helps me so much give my doctors a clue to other meds that would provide similar relief? Most of them look at me like I'm speaking spanish when I ask this question.

3) Has anyone had similar progression of symptoms? Similar things that help them feel better and found other things that work? Because I'd give up drinking tomorrow if someone could find me a med that made me feel like that all time, especially without the side effect of actually being buzzed/drunk. Turns out you can't go to work drunk.

I have to have a beer to go get a haircut (the noise, music and smock around the neck really set me off). I'm going to try the florinef for little while longer and just not drink, but social life and my hair won't appreciate it.

If any of you took the time to read this whole thing, I'm truly sorry But I'm also very appreciative of any helpful suggestions or insight you might have.

[Mytwogirlsrox]

In sorry your here, but you'll find so much info here

I know there are people on the board who have similar experiences with alcohol. Hopefully you'll get some great responses

I can totally relate to symptom checking causing symptoms, checking your BP caused you to be faint? I do that a lot, in fact I don't know how long I've had pots or anything because I never noticed I had tachycardia... I went to the Dr for anxiety left diagnosed with Pots. I have really struggled to get past my emotions affecting the physical symptoms. I try not to check my vitals now. I do more of a " how do I feel.. Okay... Then I'm fine for now" kinda thing.

Anyway glad you stumbled across Dinet, it's a great resource

[Relax86]

I'm another one that feels normal with alcohol. Our symptoms are similar. But at some point (aka Jan 2012) the water, gatorade and alcohol stopped keeping me upright and I crashed. Currently on 5mg 2x/day cortisone. 2.5mg 2x/day midodrine. Midodrine was a big help to increase my BP and keep me alert but didn't really make my nervy feelings go away. Although yesterday I had chinese f/b my usual dose of midodrine in which I felt a terrible surge lasted several hours. BP was 118/86 which is very high for me. Went to bed with stabbing headache on left side of my head. Glad I woke up, headache less. BP was 122/78 today. So didn't take the midodrine. I'm a little off topic but I was intending to say we share some symptoms. The other part of my post is to confirm just how rapidly things change....and when you think you have one thing stabilized - POTS keeps you guessing. Good luck.

[bellgirl]

I try to avoid sugar and caffeine...I may have a glass of wine on occasion, but I wouldn't over do, because alcohol vasodilates your vessels, and can cause you to feel more faint. I try to use supplements to counter the effects of my medication at times. It's hard to find a balance when your autonomic nervous system is not working properly. Chocolate has sugar and caffeine, so it can cause you to be too hypersensitive to everything and cause adrenaline surges. I'm not on the medication you are on though, so can't help you there. I started out hypertensive, so I'm a strange bird...You can see my meds and supplements below. Welcome to the site. There is a wealth of information on Dinet, and a lot of supportive and encouraging people, as well

[Wendy C.]

My experience with a 3 week trial of Florinef 2 months ago is that it did something to finally give my body that push to be able to handle a small amount of caffeine and occasional alcohol again after many months without them. The only thing I can think of with your Florinef scenario is that maybe you weren't taking enough extra salt and potassium and since alcohol can deplete your body of electrolytes, maybe the beer just sent you into a further electrolyte-deprived state that was just too much? There are a lot of prior threads on this site about taking extra salt and potassium while on Florinef, you may want to look those up.

I am curious if caffeine would be a good replacement for you, instead of the alcohol? Not a Red Bull, but maybe a Coke or single cup of coffee, for example? How does caffeine seem to affect you? I wonder if the 3 pm candy bar's good effects are due to the caffeine content? I have a similar need around 3-4 pm for chocolate.

Wendy

[SomethingClever]

That's an interesting thought, Wendy. As a younger man, I drank a TON of caffeine and I've since cut it out almost entirely. I'll have to experiment and see if it helps.

[issie]

There is a connection with dopamine and POTS. Alcohol increases dopamine. It may be that you need more dopamine. A possiblity.

Issie

[Zap]

I've been meaning to respond to this topic, as I find a lot of similarities to me here. I'm a 29 y/o male, too. Had the same symptom - feeling faint in a hot shower as one of the first things. Also, bending down to tie my shoes became a bit of a task at times, which freaked me out a bit.

Alcohol helps me feel better, too - it definitely reduces my symptoms, and when I have a few drinks in the evening I feel a lot more with it (ironic as it seems). The sweating definitely reduces and the racing heart, too. It may be interacting in some way with the Pamelor that I'm taking to prevent migraines, as that seems to raise my heart rate a bit. Unfortunately, I can't stand the side effects anymore so I've got a follow up with my migraine neuro's nurse tomorrow. She was surprised when the autonomic neuro put me on it, since it is known to cause/worsen OI, which it is most certainly doing to me.

Anyhow, the only thing so far that has been helpful aside the alcohol, is my Eucommia Bark tea, which is a natural beta blocker (non-selective). It also calms things down, and makes me feel a lot better. Unfortunately, I have not had any tests to prove this, but I know I have hyperadrenergic symptoms, and I expressed this at my autonomic appointments. Sometimes drugs are administered during TTT, or standing catecholamine levels are checked. Once again, not sure why this wasn't done for me, but I just know if I'm super worked up, a drink or two brings my body back to what could conceivably be called a "normal" state. Alcohol generally doesn't have the same effects on me as it does commonly on others.

This is starting to unravel some of my mysteries. I'd be MORE likely to get a migraine if I didn't have a few drinks. The Pamelor is probably raising dopamine, but it raises levels of other neurotransmitters, most likely causing some of my symptoms. But this is likely what is stopping the migraines. Low dopamine again links back to NET function. Funny that the SAM-e hasn't helped more, but maybe the SSRI's are getting in the way.

Anyway, I've rambled a bit - but also note that it is interesting that Mayo d/x POTS when your other TTT was "normal". So far I just have dysautonomia d/x, but highly suspect that a facility with more experience would probably say I have POTS. I'm seriously considering going to Mayo to rule everything else out and get a final diagnosis. I'm curious how hard it was to get in there and the timeframe.

[SomethingClever]

Once I had a referral from my primary care, it took maybe 3 or 4 months to get into Mayo. (Possibly longer, I'm having trouble remembering specifically.)

I recently called Mayo myself to see if they would see me again for more in depth testing, and have a tentative appointment for October.