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Everything posted by yogini

  1. That question is so personal for each patient. Our bodies are unique and each person's POTS is caused by something else. If your daughters have specific symptoms that are untreated, you might want to post about those to ask what others are doing to help with those symptoms. If your daughters are on many medications already, you may want to meet with your doctor to discuss each one and whether it is actually helping. Though I am surprised that the sheer number of medications would be a reason not to prescribe a new one, if the doctor thought it would help. Some people need lots of medicati
  2. I agree there is some controversy surrounding this treatment - but ultimately something that helps some patients is a good thing. Even if not a cure, helping is good. The results show that the treatment doesn't work for all patients and is highly challenging for many patients, so hopefully doctors would not blame the patient if it doesn't work. Patients shouldn't blame themselves if the treatment does't work of them or if they aren't a candidate for the treatment. The risks would need to be evaluated by each patient with their doctor. There are always risks, but then there are also serious ri
  3. Sylvie - the ones I have are all in pill form. I am not sure about cutting the pill. I probably need to buy a non-time release version to cut it and/or ask my doctor about that. Whole foods did not have a great selection, but they were mostly in pill form. Sue, I also tried melatonin a few years ago and it didn't work AT ALL. I tried a few different brands at that time, but they were mostly the lower quality/drug store version. (Not to say that it will work for you -- we are all so different!)
  4. This symptom coincides with my other POTS symptoms. When I got on the right treatment track for POTS I didn't have this so much anymore. I agree with the compression stockings - if your blood pressure is low they can help a lot. Brain fog can be caused by low blood flow to the brain.
  5. Sylvie, Thanks so much for the information. I will look for it. Melatonin is a substance that the body secretes. My research indicates that the recommended dose is 500 mg. The problem is that in the US it is hard to find a dose smaller than 1 mg. I'm a small person so actually cut my Ambien in pieces when I use it. Otherwise I would sleep for a few days! I expect to need a melatonin dose smaller than what is recommended for the average person. So I probably need something less than 500mg - which is a fraction of the 1mg pill. I agree that there is no regulation of supplements in the US.
  6. I am trying melatonin for the second time. I tried it before and it didn't work at all. Now, it is working too well. Or should I say I am all over the place with it. My doctor recommended starting 0.3 mg, but the smallest dose I could find is 1 mg. she said that is OK to try. The first day I took it, I felt drowsy til noon - not just drowsy, but having trouble concentrating, etc, Sine then, there are some nights when I wake up in the middle of the night and can't get back asleep. Other nights I don't wake up til 10am and am late for work. Does anyone have experience with dosage and these sympt
  7. It is wonderful that there is a protocol that works for many people with POTS. Even if 5-10% of the patients feel better, it is very important given that we don't have many treatments or people studying us. I am also glad that firewatcher had a good experience with Dr. Levine, which is different from the general perception of him. I guess my question is - if you are still on POTS meds after completion of the treatment, is it really considered a cure?
  8. I used to get migraine type headaches which lasted for days following exercise. That is when I used to do cardio. Yoga is much better for me. Also it helped me to build up my exercise tolerance in very slow increments - like going from 5 mins to 10 mins to 15 mins.
  9. I am not personally familiar but have read that this center is controversial in other POTS discussion groups.
  10. Kelly, Thanks! That's a really good point. I have also noticed that some items I bought on Amazon (not sold by Amazon, but by third party sellers ther) are counterfeit. I heard such good things about VSL, but at the same time $100 for a science experiment seems like a lot! I will have to keep thinking/searching. I will read up on the brands you mentioned, but I have already tried a few well-known probiotics that didn't do much for me...
  11. Hi, I am wondering whether anyone here has tried VSL#3? A friend of mine was telling me about another friend with a chronic illness - the type which no doctor could figure out what was going on with her. She tried VSL#3 and it helped her with everything. It is expensive $100 per jar $60 on Amazon.com. I am thinking of giving a try. I think it helped this person with other unexpected things - like clearing up her skin, increasing energy, improving bloating, etc. I searched on the forum and a few people asked about it, but I didn't see much experience with actually using it. Thanks. (I have
  12. Yes. If you google, there is also a link between irregular heartbeats and gas/belching. Many of us have irregular heartbeats,
  13. Yes, I had two separate wisdom tooth extractions with local anesthesia, not general. I had no POTS issues. I told my dentist about my POTS and have gotten carbocaine instead of novocaine for my fillings and extractions. I learned about it from this forum. Carbocaine doesn't have epinephrine, so it doesn't affect HR and BP. It is a much weaker painkiller so you have to keep getting shots (fun). But no after effects other than the usual pain. I took ibuprofen for the pain because again no POTS effects. The best thing you can do is inform your POTS dr and dentist and get their advice for yo
  14. Yes, MomtoGiuliana I am concerned that if I got the flu I'd get very dehydrated which makes my POTS worse. In general since getting POTS I feel any kind of illness much more and recover slowly. Between traveling, living in a big city and taking the subway every day, I also come into contact with lots of germs. My POTS onset actually occurred after a flu/virus. On the other hand, I am concerned about sensitivites and am aware that putting any foreign substance in my body could make my POTS worse. I can certainly understand why someone would choose not to get the shot...
  15. Many of us wonder if it is safe to get a flu shot. It's personal for each of us and should be based upon your doctor's advice. I've always gotten a flu shot (I have had POTS for almost 12 years) and just had it a couple of days ago. I haven't had much of a reaction to the shot, thank goodness. I thought some of you might find this article helpful, though it is not geared to POTS or people with chronic illnesses who may have special risks. But still interesting: http://well.blogs.nytimes.com/2015/10/16/ask-well-flu-vaccine-risks/?_r=0
  16. My resting rate varies from 70-120. Literally. Such is life with POTS. I think my "baseline" is 75-85.
  17. Just thinking that instead of making it into a formal meeting you could also test them out - like say you're sorry you made xyz mistake you were feeling really suck on that day. See how they react and then mention the POTS if they seem receptive. If you tell them provide very limited info. You don't have to tell them you've had it since you were 3, etc.
  18. Does your company have a policy which protects people with disabilities? Are there other people with disabilities that they accomodate? Usually this is required by law. Do you have close friends/people that you trust and who will look out for you? There is always the chance that the info will be used against you. I have two different friends (at other companies) that got fired after reporting sexual harassment - both coincidentally got bad performance reviews and were then terminated. If you're fired after bad perforrmance reviews it is hard to prove discrimination. That makes me nervous a
  19. It would not be unusual to have pins and needles with POTS, whether or not you have MVP. For example, you may have pooling when you stand. That means blood may be rushing to your feet from gravity. Then when you sit or lie down the blood moves upward and you get the pins and needles. Chemical sensitivity also isn't unusual. MVP is actually very common in women. I've heard 1 in 4 or 5 women has it but most are "fine". Your doctor could advise whether your symptoms are from MVP or something else.
  20. Some of this may not be POTS related. You lose your tolerance if you haven't had alcohol in a while. Other factors play a part, like if you drink on an empty stomach it will go to your head a lot faster than if you are full. It also depends on the quality of alcohol and what your body can tolerate. White wine is the easiest for me to drink. I have many non-POTS friends who can't handle more than 1 drink a night. After getting POTS I took a couple year break from alcohol, but was able to drink again after a while. My tolerance is actually fine but I get after effects (like a hangover) more
  21. Even though I am "better" and med-free now, I've always found it hard to do cardio and to exercise in an upright position. The easiest forms of exercise for me are horizontal and less vigorous. Yoga and stretching have helped me the most. I second the idea above about doing DVDs. Practicing walking is also a great form of exercise. Also, for cardio building up to doing exercise helped me - for example riding a bike for 5 min and then increasing in 5 min increments until I was up to 45 min. Cooling down slowly also helps.
  22. I am glad you are feeling much better and that you are able to do some normal things. A "remission" as you mention is very rare. With POTS/dysautonomia it is normal to have ups and downs - the ups and downs may last a few weeks or months or days. When you first get sick, there are usually more downs. Total improvement generally takes time (many months/years). Some people are able to find medications which bring them closer to "normal". Managing stress can be a big help but would not address the underlying medical condition.
  23. Alcohol can put you to sleep and relax you. I don't think it raises blood pressure, but if you have POTS maybe it is slowing your heart rate?
  24. My guess is that you're getting a buzz and forgetting about your symptoms. Alcohol generally lowers blood pressure, both by depressing the central nervous system and by causing water loss. Scientifically it doesn't seem it would be helpful to many people with dysautonomia -- unless you had high BP. If you take florinef I assume you don't have high BP. Your doctor can advise best, but drinking every day to help with POTS symptoms is an unusual course of action! If you are drinking alcohol make sure you drink enough water so as not to get dehydrated.
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