Jump to content

yogini

Volunteer
  • Posts

    3,110
  • Joined

  • Last visited

Everything posted by yogini

  1. Are you measuring your HR before during and after exercise? I used to get terribly sick after exercise (and still have symptoms even though my POTS is much better.). I find that it is because my HR increases much more than a normal person's. So for example within 5 minutes of riding a bike slowly at the lowest level my HR goes from 75 to 125 when a normal person might go to 100. I can't ride at my full strength, because my HR would quickly go to 180 or 200. Sometimes after exercise I would have migraine headaches for DAYS until I finally figured out the connection to HR/BP. It can also be helpful to measure your BP before and after exercise. I have found ways to work around the exercise hangover - drinking water before during and after, wearing compression hose and cooling down. Cooling down is really important until my HR has calmed down. When I first got POTS I would exercise and then sleep for a few hours! Eventually I realized that yoga was the best exercise for me, because it keeps me moving while having my HR low. If horseback riding is triggering your symptoms, it also might make sense to take a break until you get your situation sorted out. Good luck!
  2. I think your parents want you to get better, but finding a treatment for POTS is usually a long and complicated process. Acupuncture can be expensive and also may not be covered by insurance, which is something to think about. I have heard it is very effective for certain things, like pain relief. It depends what symptoms you are look for relief from. I haven't seen too many stories here about acupuncture as a primary treatment for the main POTS symptoms (such as fast HR and low BP). There are many traditional treatments that people find helpful -- like beta blockers and florinef. DINET has good information on the various options for treatments, and on doctors that know about POTS and can help guide you.
  3. I would talk to a dr about this as it sounds unusual. I can understand how a laser might affect the skin, but not sure how a laser could penetrate into the brain given that there is a strong skull bone protecting the brain? For heat, I think a heating pad would cheaper and be more effective than a laser or bulb, but again I would be very careful of putting anything on the head or brain. There are lots of other ways to increase cerebral blood flow. For example, the Mayo Clinic recommend to me that I lie down for 45 min with my feet above my heart. This returns blood to the brain and the benefits continue after you've gotten up. I believe this has specifically been studied for POTS. I now do headstands and handstands in yoga, which are even more effective!
  4. Interesting. There are so many variables from your regular routine, so it's really hard to know what's making you feel better. Have you been laying down a lot more than normal? In any case, enjoy each moment of it! I hope it lasts - let us know how you do in the coming weeks.
  5. I think each person has to measure against her own baseline. So if your normal BP is 120/80 and your BP is 100/60 you are running low for yourself. My normal BP is 90/60, so it takes a lot more for met to feel sick. There are a lot of things that can affect BP, so make sure you measure it consistently - whether sitting, standing, etc.
  6. If you feel depressed, maybe it would be helpful to see a therapist? These issues are really complicated and personal to you - and a professional can really help.
  7. There is a special hosiery detergent you can get that works well and helps the stockings last longer
  8. Eating smaller meals and fewer carbs often help with this. For some reason I can handle a big dinner better than lunch or breakfast. I generally feel better toward the end of the day.
  9. The sports tights are good (and more comfy), but just don't provide as much compression. I did not find spanx to be that effective. I find even the 15-20 compression hose is better than sports tights or spanx. You could try a few different things and see what works best for her. I usually wear a pair of opaque tights (or pants) over my compression stockings because I don't like the way they look.
  10. That crazy kind of exercise is not sustainable. There is new research which shows that the body actually stops burning calories at the same rate if you overexercise. It's the same thing with food - if you diet too much it doesn't work. Everything in moderation.
  11. Hi Josh, It takes a while to figure out what works for your POTS. It is normal to be scared and not to know what to do. Do you depend on your family for income and support? Do you live with them? What I would do is try to take care of yourself first - so if your sister asks you to carry her suitcase, tell her no. It does not make sense to do anything to aggravate your symptoms. Also, I have found that some people are easier to talk to than others. For the people that aren't as supportive, I try to tell them as little about my condition as possible. You should ask your doctor whether to be worried about those HRs. Irregular HR and BP often comes with the territory with POTS. It is scary at first, but a fact of life. It might not make sense to worry about the numbers alone, unless there are other lasting symptoms.
  12. It is frustrating, but I actually wouldn't worry about this too much. You aren't the first POTS patient on the forum that this has happened to! In general, white coat syndrome is normal - meaning that patients often have different results when they show up at the dr's office. POTS is also a condition which is up and down. A leading dr would know that people don't have symptoms every day. The positive TTT is enough to diagnose you. I am glad that the dr believed you, and hope you find treatment.
  13. Thank you. I think the Charge is the only one that has the HR? It is more expensive and bulky. I like the skinny one that looks more like a bracelet. That one is also cheaper, but maybe the Charge makes the most sense for POTS? I have a few Polar watches, but they don't have the analytics of Fitbit. And your right that the chest strap is really uncomfortable. Guess I will splurge...
  14. I think I saw some prior posts about Fitbit. For those of you that have one, I was wondering which model you use? Has it been helpful in improving sleep, monitoring fitness and/or keeping track of symptoms? Or do you think it is more of a fun toy than useful? A store near me has them on clearance, so was thinking of picking one up. But don't want to waste money either. Thanks!!
  15. I am feeling tired, but not POTSy. Today I just did yoga. Thank you for your support!!
  16. After a long break from exercising, today I went to a yoga class at the gym. Afterward I decided to try riding a bike for 5 mins. Usually I wear compression hose when exercising, but I didn't have any with me today. In 10 years of POTS, I have always gotten a headache from cardio. I had no headache so I kept exercising for 25 minutes. My HR stayed below 120, which is miraculous for me!!!! Let's hope this lasts.
  17. It is hard to do everything at once. If I had to guess, your increased activity is contributing to the problem. How about skipping exercise for a couple of days to see how you feel? That shouldn't lead to deconditioning and you could see if the exercise/more activity is contributing to your feeling worse? Exercise is shown to help SOME patients, but not all. I would worry more about how you're feeling than trying to satisfy what your doctor is telling you to do. If a doctor is pushy and not listening, then maybe he isn't the right doctor for you. It might also be helpful to monitor your HR and BP - to see if that is contributing to your symptoms.
  18. 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 medications to treat their POTS, but often just one right med (or the right combination, like beta blockers and florinef) is enough to do the trick. Medications can have side effects and that could also be part of the problem. In addition to medication, there are other treatments - like compression hose and exercise - that may be appropriate. Good luck to you.
  19. 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 risks with any of the POTS meds. You can also listen to your body. I didn't do the protocol, but when I started with a bike I did 5 minutes because that was all I could handle. Eventually I got to 45 mins building 5 mins at a time.
  20. 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!)
  21. 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.
  22. 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. This is one of my concerns with supplements -- why I almost prefer to take Ambien. At least you know what's in there! But there are certain brands of supplements in the US that have good reputations. Currently I am using Country Life and Jarrow. I go to a special health food store or Whole Foods to get these brands. I would never buy any supplement from a drugstore or Target, etc.
  23. 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 symptoms they can share? I really want melatonin to work for me - it is much healthier than ambien.
  24. 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?
×
×
  • Create New...