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Everything posted by SomethingClever

  1. My free testosterone has come back on the low end of normal, but I don't have any issues with libido. I'm basically the opposite of you, the desire is there big time but I just don't feel well enough to date.
  2. Heh, I'm tired of doctors too. But it seems like the only alternative is never getting better, so I'm willing to put up with whatever I need to for at least a chance at recovery.
  3. So obviously finding your underlying cause makes a huge difference in finding effective treatment. I haven't been able to find a doctor invested in running down all possible underlying causes, but Mayo is willing to see me again to run the basic autonomic tests again and allegedly tell me my POTS subtype. It's going to be a tremendous pain to fly out there and I'm wondering if it's going to be a waste of my time. I'm going to go regardless, but I'm wondering if those of you who know your subtype have found that your treatment has become any more effective as a result of knowing?
  4. I too just want to commend those of you who are going to work, taking care of kids and cooking dinner and doing all that. Taking care of myself is work enough these days. Fortunately my job is letting me work from home, as I pointed out that I wasn't getting anything done if I was feeling horrible all the time. If I hadn't had enough time built in already proving myself with them, I don't know what I'd be doing.
  5. I live alone so really only have to worry about myself and keeping up with work / my apartment. Get up at 6. Shower, get dressed and then rest for a few minutes before getting up and working. Work consists sitting at my laptop, typing emails, contracts and making sales calls, which I can usually do without taking much of a break until lunch time. Sometimes lunch consists of going to the store and getting soup, which is often my big outing for the day. Other times it's making a sandwich here or eating leftover delivery. After lunch I usually rest for a half hour to an hour and watch some tv. Then it's work on until 4 or 5. Occasionally I need to take a break and lay down for a few minutes because I'll feel tired of sitting up or dizzy. After work I either drive and get food if I'm feeling wild or have food delivered. Then it's rest for an hour or so to digest, and then its work out time. Ride my recumbent bike until I feel like I can't do anymore. (I'm up to 20 minutes without feeling like I'm going to puke if I keep going. The goal is to keep building up.) After the bike I watch TV and do some arm weight lifting and really just see how long I can stand as some kind of orthostatic training. I can sometimes go an hour before I need to lie back down, which is frustrating because after 5 minutes in the grocery store I'm still dying. Then it's bed about 10 pm and repeat.
  6. Getting a hair cut is the WORST. Between my noise intolerance and the cape around the neck, it's brutal. It's enough to make me consider a buzz cut just to get it over with faster, but this last time I realized even the noise of the clippers buzzing in my ear really bothers me. I've learned to deal with my strange body as well (last hair cut I just got hair all over me instead of having the cape tight enough), but would love would day to not have to deal with all this nonsense.
  7. So I know compression stockings and abdominal binders can sometimes help. I seem to be in the opposite. Tight clothing of any kind really makes me feel worse. It's gotten to the point where I can't button the top button on a collared shirt. Having a tie on or even rolling up my is bad as well. I bought a pair of shoes that was apparently a size too small and had the same feeling. Can anyone relate? Can anyone speculate on what would cause this or what it might indicate about me?
  8. 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.
  9. 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.
  10. 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.
  11. My biggest symptom is complete lack of stamina. I'm intolerant to anything after not too long. I'm able to get around walking for short periods. But if my grocery store trip takes longer than 5 minutes, I'm in trouble. I can sit up for longer, but need periodic breaks to lay down as well. I've only fainted once in three years. Most of the time if I push myself too far I just feel like garbage.
  12. I have the same reaction and have been that way for a couple years now. I can only sleep on my back, which is incredibly annoying if I'm having trouble falling asleep because I can't really shift positions. Having to lay on my side to get an echo a few months ago was no fun. None of my doctors have been smart enough to tell me the reason, but I agree blood pooling makes the most sense.
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