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Everything posted by joyagh

  1. I;m just starting acetlycholine (ACH) (natural Mestinon) supplements, along with DHEA and Seriphos. I'm convinced my hyper-Pots can be helped by balancing my adrenals. I sure hope it helps my weight. I have more hope for the DHEA and Seriphos, but the ACH might help too.
  2. I second L-theanine (Suntheanine), acetylcholine, and serine phosphate (Seriphos). amazon and Pharmaca online have them. I have to take Klonapin for mine, but theanine helps a LOT too.
  3. tha's a great complex. I take one too, but not regularly. I'm going to start being more regular about taking them. They are adaptogens, so they help the adrenals no matter what the problem (hyper or hypo). I'm also starting an L-theanine/GABA/5HTP complex as it helps calm the nervous system. I'm also on Metopropol and starting Klonopin today. Acetylcholine is supposed to help with the parasympathetic nervous system (calming) too. I might try some of that, too.
  4. thanks. I'm just so confused at this point about what is wrong with me and how to fix it. I don't have a good specialist and had to change PCP's when we moved. I hate to have to self-diagnose and self-prescribe (with a Doc's cooperation) but my palps are back with a vengeance, my pulse pressure is 60 points (low diastolic) and these adrenaline surges suck. maybe I should stop exercising if I'm Hyper due to adrenal fatigue?
  5. When I had my worst symptoms, I had a tingling face, head, neck, shoulders, torso and arms. But not the tongue. we get werid stuff. sorry!
  6. this is a poll to see if, especially in Hyper -POTS, exposure to trauma can have an effect on the body/mind/emotions which results in POTS, even if later in life.
  7. so does melatonin just lower BP, or does it exacerbate other POTS symptoms too, I wonder?
  8. glad to hear your echo was clear. Mine was too, we thought I had peripartum cardiomyopathy. scary. I have tons of heart symptoms: palps, tachy, brady, etc. I think it's all due to my adrenaline levels and surges, but I don't really know. I have 2500 PVC's per day. the BB's help, but don't elimate them. my BP also fluctuates greatly. it's good to get everything checked out. if you're cleared of cardio pathology, then the heart symptoms are part of POTS.
  9. I have created one and can "Manage topic poll" but there's no option to post it. I've looked in FAQ's and new member info. Can't find anything about how to do it. Thanks in advance.
  10. what do the antihistamines do and what kind do you use? I take benadryl to help me sleep, but nothing otherwise. RE: Klonopin for oscillations of heart - do you mean palps, adrenaline surges etc? or BP swings?
  11. I'm on Metopropol 75 mg/day and was well controlled until I started h2o aerobics. Now I'm getting adrenaline surges when I'm drifting off to sleep, which wakes me up and recurrs for an hour or so each night. I want to ask my doc about Klonopin and Clonidine, as I wonder if an A/B blocker would be better for me than just the B-blocker. any suggestions? anecdote - a week ago my dog was attacked by 2 bear hunting dogs. I had to pull her out with my 3 yo child standing next to me, not knowing if I'd get attacked or if my child would. The dog owner was a complete beligerant **** and refused to give
  12. Thanks for your replies. I'm hoping my doc will rx me Klonopin and Clonidine. I only feel normal when my BP is low, and it runs so high lately I'm not worried about too much of a drop. Is low BP the only danger with Melatonin? I have only read one article that I don't understand - just that it says melatonin makes POTS/OI worse, but I'm not sure in what way. I posted a thread about it where I linked the article. Is Klonopin the best benzo for POTS? I've never tried it but I always feel WAY better on Xanax or when I get Vicodin or Percocet for medical reasons (bad menstrual cramps, c-section, m
  13. has anyone noticed a reduction of adrenal surges from an Alpah blocker? I'm on beta blockers but have started getting adrenaline surges when I'm drifting off to sleep. I wonder if an alpha or alpha/beta blocker will help reduce this, or if I should try to get clonazapam too. I guess I can't take melatonin anymore to help me sleep as it makes POTS worse apparently.
  14. I just found this article: http://jp.physoc.org/content/551/3/1043.full states that melatonin makes OI worse. I've been taking 6 mg per night for 3 years now. How do I sleep without it? anyone else taking it or have stopped it and gotten better?
  15. cardiomyopathy is NOT normal and can be really dangerous and life threatening. I'd follow up on that and make sure if you have it or not. That's not something to mess around with. you should probably have a nuclear Echo.
  16. I've always gotten itchy at night all over, but for the last few years I've had a lot of trouble with restless legs. I have to stretch for a long time and do really deep pressure on my calves with self massage to relieve the agitation.
  17. I just started getting symptoms when falling asleep. I started water aerobics Tuesday evening, and that night and every night since I've been getting adrenaline surges when I'm drifting off. As soon as I start to fall asleep I get a surge that feels like panic, but I'm not mentally anxious. It's just adrenaline. It's been preventing me from falling asleep for hours. I usually take melatonin and benadryl and sometimes Kave to sleep, as I have delayed sleep onset and a night nursing, co-sleeping toddler. But it isn't helping since I started the exercise.
  18. has anyone done this for POTS? I've been trying pilates/yoga combo classes and I can't manage the position changes and exertion level (yet). I started a water aerobics class which winded me a bit but overall was good and more manageable (although I'm exhausted and symptomatic today). Is it worth it to ask the doc about a cardio rehab program, or just to keep doing gentle yoga, walking, biking and water aerobics?
  19. So did your POTS start during pregnancy? Mine did. I'm not sure if I'm just over-adrenalyzed and have adrenal fatigue or if I developed an autoimmune disorder due to the pregnancy. I don't have a good POTS doc. Just moved and just have a PCP. My beta blockers help 75% most of the time now, so I'm not doing much active testing/treatment etc. I'd love to hear what you find out from your new doc.
  20. Is anyone concerned that some symptoms of POTS mimich Circulatory Shock/hypoperfusion? http://en.wikipedia.org/wiki/Hypoperfusion also, has anyone had an abdominal scan? My abdomen gets distended where I look 6 months pregnant again. It's upper abdomen - like right under the rib cage. I got really skinny after I had my baby 3 years ago, and a year ago I had a sudden, unexplained 20 lb weight gain in my abdomen. I dunno if I've got blood pooling, enlarged liver and/or kidneys, or if I just haven't done enough abdominal exercises since my huge baby. I do more now than I have in years. But it doe
  21. funny you should post this today. I've been realizing that my problem is high BP. I always had super low BP too. normal was 90-110/60-70. But when I was pregnant at first it went down to 60/40 and by 6 months it went up to 150/85 and since my DD was born it's been all over the place. If I'm upright it's around 125-130/75-80. This is high for me and I feel tachy when it's this high. Lying down it goes to 90/50 and I get tons of palps if I'm not on BB's. I know doc's think anything under 140/90 is normal, BUT NOT FOR ME!!!! I just upped my BB dose and my tachy got even better and my BP is now ba
  22. Totally worse. I used to feel great at ovulation. Now I am grumpy and crampy and in pain. then 2 weeks of declining **** til day 3 of my new cycle. I feel way better in CO now, but still having problems and PMS is worse than the 10 good days I get early in my cycle.
  23. My POTS was pregnancy induced. I don't understand all the components of the illness, but I feel like gravity is such a problem when I'm symptomatic. I am feeling much better mostly since moving to CO - it's dry with high pressure and altitude. In Seattle I felt terrible and it was always humid with low pressure and at sea level. But when there's a low pressure/humid day here, I feel awful for about 3 days after. And it's gravity. I just feel like I'm moving through water and am so heavy and slow, and trying to function doing everyday things is so hard and annoying. I drop things, bump into thi
  24. I see this post is 8 years old, but I am a pregnancy induced POTS case. I had gestational hypertension for most of it and pre-eclampsia at the end. I usually had low/normal BP. I was thinking the 50% increase in blood volume during pregnancy could be enough to cause POTS in a predisposed person. Then, post partum the body drops the extra fluid and I feel like my body has never figured out how to balance the fluid and circulation. My symptoms were 100 times worse during pregnancy, and since I delivered it's been low-moderate chronic. any more/new ideas about the pregnancy induced POTS/hypertens
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