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yogini

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Everything posted by yogini

  1. 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.
  2. I am not personally familiar but have read that this center is controversial in other POTS discussion groups.
  3. 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...
  4. 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 already tried FloraQ, Florastor, Culturelle, etc. and haven't noticed much improvement.)
  5. Yes. If you google, there is also a link between irregular heartbeats and gas/belching. Many of us have irregular heartbeats,
  6. 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 your particular situation. Good luck!
  7. 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...
  8. 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
  9. My resting rate varies from 70-120. Literally. Such is life with POTS. I think my "baseline" is 75-85.
  10. 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.
  11. 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 about doing anything to stand out, especially where management generally doesn't seem trustworthy, sympathetic or kind to anyone. (You can tell I need a new job!) On the other hand, when I got POTS I told my employer at the time and they were wonderful. I am hoping to wind up at another company like this soon! My POTS is mild. I would prefer to disclose at the next job, but only if I trust them.
  12. 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.
  13. 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 easily. I will feel sluggish, have a headache and POTS symptoms like rapid heartbeat and dizziness the next day (or days). I don't drink every day because I have to rehydrate/recover. Many POTS patients can't tolerate alcohol, but many of us can. For me it is not only relaxing but made me feel more like a "normal" person to drink socially. It might be worth experimenting gently. For example you could have 1/2 a can of beer or 1/2 glass of wine rather than 2.
  14. 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.
  15. 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.
  16. 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?
  17. 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.
  18. Being below sea level might actually be beneficial for POTS, but I would also be worried about the change in barometric pressure from going under and then coming back up again. You may want to search the forum. I am not sure if there are other discussions on SCUBA, but there are a lot on flying. Some people have trouble and pass out during ascent and descent due to the pressure change. Underwater it would also be hard to communicate and signal for help if an issue comes up. Because of this, I am very surprised that a doctor didn't caution more strongly, but it is really individual. You also say you are going through a period of full-blown, horrible POTS. Almost everyone in the forum here improves over time -- so maybe it makes sense to at least hold off until you get to a better place?
  19. Yes, eating makes things much worse for me. Even now I am "well" and have to be careful about eating large meals. Try eating small meals with low carbs and doing some searches on the forum to see what eating habits have worked for others. It is a lot of time and trial and error, with medications, foods, and finding the right doctor. This condition can best be treated by those that have lots of experience and there are only a handful of them in the country. Most of the doctors out there have no idea how to help us and make things worse - emotionally and physcially. We need a of patience and strength to get through. Take care of yourself and try not to stress out as it will just make your symptoms worse. I hope you feel better soon.
  20. While many people that have POTS have co-conditions like mast cell which cause rashes, I do not think that a rash is a "typical" symptom of POTS. It's good that you are talking to your dr to figure it out.
  21. People post a lot of "rules" about what you can and can't do with POTS. In general, I think you need to evaluate activities based on your own particular condition, with advice from your doctor. I can handle many things that aren't recommended, like riding roller coasters and drinking alcohol. It is always scarier to try a new activity when on vacation - I worry about getting medical attention, inconveniencing the people I'm traveling and making it back home. I love the water and grew up swimming. Water sports seem fun to me. I've had good luck snorkeling for the most part, although I was on vacation last month and i lasted about 20 mins because the current was too strong. Then I was stuck on a boat for the rest of the day until I could make it back to the hotel.Not ideal I do think that in theory the increased pressure in scuba would make POTS symptoms better. I do not pass out, but I would be worried about passing out or having an episode and not being able to come up when I need to. I tied scuba once pre-POTS and got water in my mask and it was horrible trying to come up for air from 50m below. Now I have POTS. so probably won't be going scuba diving again anytime soon.
  22. There are many people who have dysautonomia and don't have POTS. On this forum, most people who don't have POTS would have OH or NCS. Do you have either one of these?
  23. It could be many things - from lying in a certain position, to the type of massage, the firmness of the pressure, or touching particularly sensitive areas of your body. For example, they could be pressing something in your neck that triggers POTS. POTS patients can be very sensitive. Luckily for me, massages make my symptoms better. I do have to give some instructions - I tell them to stay away from my stomach, chest and spine
  24. Get a BP monitor at home and start taking your BP a few times a day, sitting and standing. Keep a log. You will get a good sense of whether you have OH, and it will be helpful to show your doctor. Betas lower your BP so can sometimes be hard for OH.
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