jesse1919

It's worked pretty well for me. I've been on it for 4 years. It raises my BP slightly, roughly from 110/80 to 120/90 and pulse drops from about 120 to 90 standing. I felt sort of nauseous for the first few days and every time I increased the dose but that went away. I don't feel nauseous at all now. I developed a tolerance slowly and every few months I had to increase the dose. Now I'm at the max 10mg 3x/day and unfortunately it's not as effective as it used to be but it still helps more than anything else. Sides effects are minor - difficulty urinating, dry scalp. I don't have any side effects as it wears off - I just feel tired so it's a reminder to take the next dose. I hope it works for you. Jesse

Nothing. I went to a party the day before - felt OK. Woke up the next day with POTS. No prior history or family history.

ROGL Or you could just say," I have POTS. What's your excuse?" Yes it is hard to be nice when you're not feeling well. My POTS symptoms (and many others) vary with the time of day so I thought it should be called DOTS - D for diurnal. I think that's more descriptive, but probably dumber! I usually just tell people my nervous system doesn't control my cardiovascular system correctly. Jesse

Ahha! I saw the filename but that was no help. I never would have imagined ph34r is fear.... and I've got a few hundred hours in online games. Guess I'm still a n00b! net l33t speak - huh? Anybody else lost check out: http://hqhr.net/leet.htm Darn kids these days.... ty J3ss3

I get these sort of surges too. When I got a pocket pair in Texas Holdem my heart would go nuts and I'd feel lightheaded. I'd talk to my heart "dude relax there's $2 in the pot". POTS seems alot like anxiety but it's your autonomic reaction, not an abnormal psychological state. Your body's reaction to stress is exaggerated.

I mail ordered 1mg salt tablets. They are literally just NaCl compressed into tablet shape- no coating or anything. Consolidated Midland Corporation (CMC) NDC 0223-1760-01 Sorry forgot where I got them. Do a forum search here for old "salt" threads - there are probably 10 started... I eat something before I take one and drink a couple glasses of water with it. Jesse

I've heard of "long QT syndrome" but that's all I know.

Yes I get motion sick easily. I have always had it but it has gotten worse as an adult. Not sure if POTS has anything to do with it. Dramamine works great.

Wow very interesting. Description of Mayo tilt table tests: They did the tilt test first, then the deep breathing test, then Valsalva. You're laying down on the tilt table for deep breathing and Valsalva. The have ECG leads, breathing strain gauge around your chest and a pulse/ 02/ pressure sensor on you finger for all 3 tests. Deep breathing- they have a metronome with a light bar that you try to match your breathing rate to. It's cadence is relatively slow so you naturally breath deeply to keep your oxygen supply up. For me that was easy, results were normal. Valsavla- they have an old pneumatic blood pressure gauge, they take the cuff off and put a mouthpiece on. You're told to blow for I think 10 seconds and maintain the needle at a certain pressure (30 mmHg ?). Wikipedia has a description of what they analyze. I didn't know there was a different way to do the test ajw. Normals can get a little light-headed doing this too. You certainly shouldn't pass out especially because you're laying down.

I'm usually able to enjoy most of these things like video games, movies etc. But there are times when my heart gets pounding "irrationally" Like the climax of a movie or if I'm playing Holdem and I get a pocket pair or some "bad guy" jumps out unexpectedly. I avoid scary movies. I find the volume too loud at movie theaters.

what is this>>>>>>> Is it a ninja or what? a bank robber?

I've seen many posts about how bad the tilt test is but for me the tilt wasn't too terrible but Valsalva was bad. I answered 5. Everything moved violently in an infinity symbol pattern, blacked out, tech asked if I passed out, I said yes and she scurried out to get somebody else to help watch me (?) I had to lay there for a few minutes until I felt okay to stand. I haven't fainted with POTS except for Valsalva.

Me too. I'm a zombie in the morning and start to feel better at night. My pulse goes down and the difference between systolic and diastolic increases (meaning stroke volume goes up I suppose). I feel warmer and my veins on my hands stick out more. And my appetite increases too. I have a very hard time staying on a "normal" schedule because I feel most awake right before I'm supposed to go to bed. I don't sleep deeply during the last couple hours of sleep and dream a lot then. Like Sunfish I also noticed that if I do NOT sleep a full night I feel less fatigued later that day but the next day I naturally sleep extra and then feel especially crummy. My theory about this is that one's brain naturally raises our "excitation level" (some hormone level) during the day and reduces it at night. If a normal person this works well: they are in "low" excitation at night and "medium" during the day and they only get to a "high" state for a short time if fight or flight response is triggered. In POTS (well some anyway) our bodies are always overexcited. So at night we're in "medium" and during the day we're in "high". Our amplifier gain is too high. So if a normal person sleeps more the brain "rewards" them by allowing a little higher excitation level and the person has more energy. In POTS this backfires. Our brain unwittingly pushes our excitation even higher making tachy and fatigue worse. The reward turns into punishment. I think for me this has nothing to do with fluids or blood volume. I noticed I felt better at night before I got diagnosed. My blood volume is normal and I don't bother with salt/ fluid loading because it doesn't seem to make me feel better. I liked the Vanderbilt presentation. It's good to see that someone has realized the significance of time of day... but on the other hand I'm sure patients have been telling their doctors this for years without any research being done and he presented it as if they discovered this. I actually feel better standing at night than laying down during the day. So I really don't have POTS... I have DOTS: Diurnal Orthostatic Tachycardia Syndrome

I was taking it for ADHD and going off was hard. I didn't have POTS at the time but I got terrible vertigo. It wasn't 'lightheadedness' more like dizziness, balance, inner ear thing. Specifically when I moved my eyes side to side it felt like I got suddenly thrown across the room. So I felt sort of motion sick. It lasted for about a month as I slowly lowered the dose. At the end I actually opened the capsules up and took a little at a time. My doc said I could try a low dose Prozac because they both affect Seritonin but Prozac lasts much longer- didn't try that but might be worth a try when you get to a lower dose. Shelby, OMG cold turkey Just taper slowly. It will get better.

Interesting thread. I've been struggling to 'get out there' too. I actually have a personal ad online but I haven't contacted anyone. Dating just seems so energy consuming and stressful. I really don't think it will be fun. Although being alone isn't fun either it's just much easier I guess. I've had a few dates but I never really had a girlfriend even before I got POTS- just introverted and a little picky I guess. I sort of think women will be less accepting of a guy that's sick than men would be of a sick woman because men are supposed to be the providers, the leader, the strong one. And it seems all women want an energetic guy. Even shy women want an outgoing guy to bring them out of their shell. And if I ever had someone see my place I'd have to clean it first OK so I've talked myself out of dating enough for one post - thanks for listening. As far as broaching the topic of my sickness - I'd just ease into it. I wouldn't put it in my personal ad but I wouldn't avoid the topic either. Jesse

I wouldn't worry about it if your BP is ok. I've taken some afternoon naps on Midodrine. I even slept all night with my compression stockings on once. I felt a little funny the next morning but I survived.

Stairs are bad. When I first got sick I would see stars after climbing a flight. Climbing a step ladder is surprisingly hard too. Elevators that start and stop quickly are bad too.

Hi all, Thanks for wishing me luck. I survived the test and the drive. I've been sort of waiting for the results before I replied. Of course I had to call a couple times and get the "the doctor is really busy but I left a note on his desk" answer. Anyway, the results were normal. I'm not too surprised because salt/ fluids only help slightly but Midodrine and stockings are more effective. I suppose I should be glad I don't need Procrit injections but I'm sure you can all relate to the disappointment of getting a normal result when you feel crummy. The test wasn't too bad. The doctor that did it (Dave something) was surprised I knew so much about the test. I was a little nervous about not lying totally flat - I was in a reclining chair. I felt a little lightheaded when they took one of the vials and there's the usual sting from the IV but overall quite manageable. Well, one step at a time I guess. Jesse

Hi, I'm going to get my blood volume tested tomorrow. I should have done it a long time ago but well easier said than done - you know. My cardiologist said he's never ordered one before - amazing. And I think he's a decent doctor - at least he's heard of POTS! So I had to do the work myself - research the test procedure, sift through the Daxor press releases to find a place with a Daxor BVA-100, call, get the run-around and ended up having to drive all the way to Loma Linda even though I'm literally surrounded by doctors here in the south bay. I can't believe UCLA doesn't have a BVA-100. USC supposedly has one but I got nowhere when I called- maybe because they don't do it as an outpatient test, maybe because whoever I talked to is... you can finish the sentence. Kaiser West LA is also supposed to have one but I don't have Kaiser insurance. Anyway, wish me luck. The test will probably go okay but I'll need the luck for driving across LA on the 91 on Friday! Jesse

I'm a guy so I avoided trying "women's underwear" for a long time which was stupid because they do help. I wear them every day (not to bed). My cardio prescribed 20-30 thigh high. I just went downstairs to the pharmacy in the same building to get them. It was good because the lady there helped me get the right size but bad because they were $100 and they only had the girly sheer with lace ones. They look pretty funny with hairy legs and boxer-briefs! ameswalker has "briefhose" sweet! I'll have to try those. The price is much better too. Jesse

cottage cheese. I like to add sugar but your orhtodontist would not approve cinnamon and/ or nutmeg is good too

Sorry Doctorguest - I was jumping to conclusions. I was looking for references/ definitions for this topic and these seem pretty good: Insulin Glucose Intolerance Hyperinsulinemia Jesse

Hi all, I have had to increase my Midodrine progressively over the the past 2 years. I don't think my POTS is getting worse but it seems that I'm consistently getting more resistant to the medication. I started at 2.5 mg for the first week and titrated up to (I think) 10 mg/ day at one month. This is pretty normal to have to titrate a medication, any medication, for the first month as your body adjusts. I've taken several other meds so I expected this. But the problem with Midodrine is that it never reached steady state. I've had to constantly increase it roughly 2.5 mg/day every 3-4 months. Now I'm at 25 mg/day and it just isn't doing very much for me. I don't have any bothersome side effects at least. I'm going to increase to 30 mg/ day and that will probably help for a while but I doubt it will last. And then the problem will be I've gotten to this magic 'recommended' 30 mg/day and my GP (who knows little about POTS) might be reluctant to up it any more even if my liver labs are normal. I know I shouldn't get ahead of myself and start worrying because that will just make me more symptomatic... Anyway just thought I'd share. Jesse

Careful.... I hope you're not implying that because you haven't seen such a study that there isn't a link. Have you seen studies that investigate a correlation between POTS and glucose regulation??? One cannot logically draw conclusions based on lack of research.

Thought this story was sort of interesting and related to dysautonomia, specifically pheochromocytoma http://news.yahoo.com/s/ap/20070405/ap_on_...ld_mccoy_secret