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Flight272's Achievements


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  1. I've got POTS and neurally-mediated syncope, as well as OCD, possible Ehlers-Danlos, and a sleep disorder similar to narcolepsy without cataplexy/hypersomnia. It's kind of freakish you mentioned numbness and tingling and memory problems, because I've got those too! The memory problems especially have been awful lately. I've also had doctors try to attribute my symptoms to anxiety, depression (I'm not depressed, which is actually surprising given my situation!), and deconditioning/lack of fitness, which is, of course, a lazy attempt at diagnosis and utterly wrong. Like Clb75 said, anxiety disorders aren't positional. You can tell doctors you're not overly anxious till you're blue in the face and they can overrule you, but they can't easily deny proof that your heart rate skyrockets while standing and falls as soon as you lie down. Those conversations with doctors always remind of that scene in Star Trek TNG when Data goes to see holographic Freud because he's been having nightmares: Freud: I believe you are experiencing a classic dismemberment dream. Or in your case, being a mechanical man, a dismantlement dream... Now the image of Counsellor Troi, a female, is devoured by you, clearly indicating an unconscious desire to possess your own mother. Data: But I do not have a mother. Freud: Do not interrupt! The knife in its violent connotation suggests a certain feeling of sexual inadequacy. Data: But I have no sexual desire. Freud: Ach! Impotence on top of everything! It is all becoming clear to me now. There might be a paper in this. Data: I do not believe I am being helped by this session. I had a 48-hour Holter monitor test which showed my heart rate averaged 95 and was over 100 50% of the time. I had a tilt table test and fainted after about 5 minutes. I've been on propranolol for about 4 years now, and it helps prevent the gasping feeling when your heart rate goes up to like 150 from climbing a flight of stairs, but I've also had to go down to 25 mg/day because I felt like it was making me even more lightheaded. I would say it's only been a minor help, and has certainly not impacted my quality of life much. I'm glad I'm fairly skinny because I know if I was overweight the doctors would tell me that was the cause of all my problems. Even so, they keep suggesting exercise - like rigorous, running on a treadmill exercise, which I did for a few months, but it didn't help, and they never take into consideration that I do a ton of walking as a mode of transportation. Most people I know are far less active, and they don't have POTS. It's becoming more and more incapacitating for me (the POTS/neurally-mediated syncope). I can't go shopping anymore unless I know exactly what I want and where to find it, get in, buy it, and get out. Stores are always overheated, and if I have to stand still for a few minutes, I faint. If I keep on the move constantly, and it's nicely air-conditioned (and there's no uphill walking), I do much better. Whatever I do now, I have to carefully consider beforehand whether I'm likely to encounter a situation where I'll be left standing, like in a line-up or crowd that's not moving anywhere, or if I'm going to enter a non-air conditioned environment. If I do get stuck standing in a line, I end up just crouching on the ground despite the looks people give me. I don't care anymore. One doctor advised me that I have to be my own advocate and pester doctors until they give me the testing or treatment I need, but I'm too tired to do that anymore. I'd spend most of the doctor's visit explaining my complicated health history, explaining what POTS was, explaining how it is I know it's POTS and not anxiety or lack of fitness, only to be brushed off or told there's nothing they can do other than to advise me to drink plenty of water and eat a lot of salt (which I already do). My day is only 10-12 hours long because of the sleep disorder requiring 12-14 hours sleep a night - I don't have time to pester doctors. I hope you can at least get a diagnosis though. Hopefully your POTS won't get as bad as mine.
  2. Haha! I laughed at the "staying conscious is a luxury anyway" bit! Spot on. Good to know other people understand the irritation at being told not to worry about barely having a life because it'll get better at menopause. So in 25 years I'll be fine? And what exactly am I supposed to do in the meantime? What would my life be like by that point even if it were true that it would go away? What about those studies that showed quality of life is similar in POTS to people with congestive heart failure? No one tells people with congestive heart failure, don't worry, it'll get better in 25 years because by then you'll probably have died of old age anyway.
  3. Did you know you had adrenaline surges before you started Clonidine? As in, did you have that tested somehow, like an overnight sleep study? I think my doctor might have suggested that to me, but I didn't try it because he was worried that something used for high blood pressure would only exacerbate my low blood pressure and fainting. Maybe it would stop the night sweats, but make me even more exhausted during the day.
  4. Ack, I saw your thread title and was immediately like, heck yes! It completely sucks, right? I started having drenching night sweats when I was about 25 (eight years ago), and I'm sorry to say they haven't let up since. Every single night. Drenched. I've had to get a mattress protector because the sweat was totally ruining my mattress. It ruins all my pyjamas, too, and I have to do laundry much more often than I otherwise would. And when my sheets and blankets are drenched in the middle of the night, I have to lay a dry blanket on top of the wet sheet, because I can't change my sheets multiple times a night. Then I air the wet ones out in the daytime. Have you noticed any contributing factors other than heat? I still get drenched in winter sleeping with my window open, but I've recently realized that I only have night sweats in connection with dreams. I have vivid dreams (usually neutral-to-stressful) almost every night. One time I half-awoke from a dream because a rivulet of sweat was streaming down my back and tickling me, but the dream kept going, so I had to force myself awake, and the stream instantly stopped, like a tap was turned off. And on the very rare occasion when I don't remember any dreams, I wake up not sweaty at all. I've mentioned the night sweats to my doctors several times. They checked for rare causes of night sweats, like cancer or early-onset menopause, and when everything was normal, they just shrugged their shoulders and gave up. Hyperadrenergic POTS can cause excessively high heart rate at night, I've read, which might cause sweating. Do you have temperature-control problems during the day as well? Have you recently started any new medications that could be causing it?
  5. I have POTS and possible Ehlers-Danlos (still waiting for first appointment with geneticist). I was diagnosed with a pituitary tumour a few years ago, around the same time my POTS symptoms got much (and permanently) worse. It's just a 3mm prolactinoma though.
  6. I sometimes get spells where I'm bed-ridden and half-aware with a heart rate of 50 or so, blood pressure at about 60/38, but my docs just say, "wow, that's low," and don't seem particularly concerned after they've done echoes and found no structural abnormalities. So I can't say I know of a reason for it, but in my case it doesn't particularly worry me. I suspect it's related to my flushing rashes, which they never found a cause for, but I think are probably Mast Cell Activation Syndrome.
  7. I was tested for pheochromocytoma by my dermatologist because of my POTS symptoms in conjunction with suddenly appearing full-body flushing rashes that went on for a few years and still flare up once in a while (long story). I didn't test positive (though I was tested by means of a 24-hour urine collection during a time when I didn't have symptoms, which wasn't ideal). The symptom that didn't really match for me was high blood pressure, because my blood pressure is low to very low. Even when my heart rate is going 150, my blood pressure's still low. But you say you have high blood pressure spikes, which is a symptom of pheochromocytoma, but it could also occur for a number of reasons. When you have a blood pressure spike, how high does it go? Is it only high during those episodes, or is it on the high side most of the time? Did your doctor test you for other causes of high blood pressure?
  8. I don't know, but at 28 years old my cardiologist pooh-poohed my POTS and said it would probably go away when I reached menopause. But I also think he's an idiot. And there's more than one cause of POTS - the kind typical of young people might not have the same origin as POTS that suddenly appears in an elderly person.
  9. You could still have POTS with a negative tilt table test. Like you said, you were having a good day, and I think everybody with POTS has days on which they function pretty well. I've had a tilt table test for POTS, and my heart rate only went up 20 beats, which wasn't the thirty usually required, but I was having a fairly good day. I was still diagnosed with POTS based on my report of symptoms (usually my heart rate is 60 lying down, 90 sitting up, 110-120 standing, and 150 climbing stairs). I also had a 48-hour Holter monitor test which showed that my heart rate was above 100 over half the time. I did faint during the tilt table test, before they got to the drug part. The hospital I went to was trying to see if they could cram twice as many tests into a day, so they only gave me like 8 minutes before they were pulling out the drugs. I fainted before they got to them, so they diagnosed me with neurally-mediated syncope as well. Personally, I think the tilt-table test is flawed because it's only a snapshot of your entire life experience. Not to mention you're strapped to the table, and the table, even when upright, is not at 90 degrees. You're tilted back a bit, so that and the strap mean it's not so much standing as leaning. I'd try measuring your heart rate lying down vs. standing several times a day for a couple weeks (using a heart rate monitor of some type) and then take a sheet showing the results to your doctor.
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