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  1. Today
  2. I would like to add that I personally benefit from increasing the exercises by frequency rather than length. I am not able to increase the time I spend on the rowing machine in one session but rather the frequency of the sessions. Instead of increasing from 2 minutes daily to 3 minutes twice daily I increase to 2 minutes three times a day and so on. This seems to avoid exhaustion that carries on throughout the day.
  3. @Alice Jean - I just have a bottom-of-the-line mattress but I do think that a proper mattress can make all the difference. If you can afford it at all it might be very beneficial to invest in a reasonable priced mattress. I am not sure if an adjustable base would be necessary other than for comfort, but it is recommended to raise the head of the bed for POTS. I found this on Dysautonomia International: Elevate Head During Sleep It is recommended to slightly elevate the patient's head during sleep. This is done in order to help (re)condition the patient's body to orthostatic stress,6 and this can also help patients that may be experiencing gastric motility problems that result in acid reflux or G.E.R.D. The best way to do this is to raise the head of the bed with a few bricks or large books. A wedge pillow is not very helpful for this. Elevating the whole body and having the feet be lower than the hip area is needed to get the intended benefit. A wedge pillow only elevates the shoulders and head, but does nothing to change the position of the hips or the lower legs. According to most of the literature all that is recommended is elevation of the head, so I am not sure that an adjustable bed would be necessary. But I always follow my older, starving artist brother's advice: Save where you can but never on mattresses or shoes!!!!!!!
  4. @Luke - a recumbent bike is not considered medical equipment and I doubt you will get it covered by insurance. See if you can get a used one?
  5. @Scout - yes, we have to be aware and prepare by taking the recommended steps like handwashing, avoiding crowded places IF POSSIBLE etc. However - since that is all we can do there is no point in fretting. The anxiety over what CAN happen can be worse that what DOES happen. I too get very ill whenever I get sick and am also afraid of getting sick - but I do not let this take over my life. Next month I will be flying overseas and I did consider the fact that being in a crowded airport could be a risky business. But I will not let that change my plans or cause me to worry. --- This pandemic is affecting many countries and unfortunately it affects countries that do not have the medical resources we have. I truly believe that it will pass, just like the other flus we had to deal with in the past. Remember SARS and H1N1? It was overcome, and so will this. Until then just be careful.
  6. I'm not sure if the situation with the virus is fine, though. It's about to be declared a pandemic. Look at what just happened in Italy, Iran, South Korea. People with chronic health issues, and the elderly, are at risk. As mentioned, a simple flu that wasn't even that severe nearly killed me last year. I hope this all blows over soon, and my heart goes out to those affected, but this situation could still be very serious. People need to be aware and be prepared.
  7. @Sue1234 - my mom's pituitary doesn't work either. Fortunately, her doctor recognized it, but there wasn't anything she could do to help her. I think my daughter might need a 24 hour cortisol test (she hates those), and maybe an ACTH test. Her rheumatologist is also running some labs, too, just to see where those numbers are at. So sorry your doctor won't do anything. So frustrating!
  8. I don't believe insurance companies pay for these, at least not in the U.S. My doctor told me to put in a pool, but that isn't going to happen. You might be able to find a used one at a sports resale shop or online.
  9. I’m curious if I can get it prescribed to get one for outside so that I can enjoy the outdoors and exercise.
  10. Yesterday
  11. Hi all - I was wondering what mattress brand everyone has? Do you have an adjustable base and did it make a difference in quality of sleep? I hate the thought of spending thousands on a mattress and base if it doesn’t change the quality of my sleep by leaps and bounds
  12. I started exercising on a recumbent bike and then progressed from there I highly recommend it. If like many with POTS you have exercise intolerance of some kind, just do as much as you can to start and advance as you can handle from there I started at just 2 minutes at a very slow speed and eventually worked up to 45m cardio on it and then moved to the upright bike and finally the treadmill, roughly following CHOPs modified Dallas Protocol
  13. About five years ago, my 8 a.m. cortisol was trending above range a little, with a high-normal ACTH. Starting two years ago, it started trending down. In the beginning of last year, it was at the bottom of the normal range (around 5) with an ACTH sitting inappropriately low-normal (around 11), and my new endo did a Cortrosyn stimulation test in September. It came back 0.2 points BELOW the cut-off of normal stimulation(18 is the cut-off), but he said I was just fine and it was nothing to worry about. (I beg to differ). From my research, I think I have a pituitary that is not working correctly, so it isn't signalling the adrenal to put out cortisol. That is Secondary Adrenal Insufficiency. When my cortisol began getting lower those two years ago, I also got what I call a new case of having CFS. I used to have POTS but plenty of energy to want to do things but couldn't because of POTS. Now, my POTS is actually better, but I have no energy or drive to do anything.
  14. Yes, I would love for them to take her levels at 8, 12, 4, 8, midnight, and 2 am also! I do think hers would be "off". My mom's pituitary doesn't work well at all. Her ACTH test came back proving that. I do think that dysautonomia people would probably have very similiarities, too! This is all very interesting. Her hematologist sent a referral for her to see an endocrinologist that she likes. Hopefully he'll be better than the last one my daughter saw. She was awful. I think there might be a correlation to her cortisol and her pain levels. Maybe even her norepinephrine levels (is that the same thing?). She's never had any of these tested and I'm just wondering if it would be beneficial. I do think though, that due to her pain and sleep cycles, it might throw some of the testing off, and that can't be helped. Hmmm, always something.
  15. I live in Southern California but have also traveled a fair bit. I have found that the Dry weather helps but the Heat can make symptoms worse. For me I am better off in a colder dry atmosphere than in a Moist Cold Climate or Hot either way. Once the temp hits 80 my hr stays elevated above 100 sitting or standing. I was in South Texas and it was cold and humid and I couldn’t warm up for the life of me. Then I found battery heated clothing and was able to help keep my body regulated better. I still haven’t found a cool clothing that helps, ice packs can have to much of an impact. Personally I am looking to relocate to the North West where it is cooler and “Dry”. Even in Southern California the Barometer effects my headaches, and that can be just a front moving over Colorado to do that. i hope that helps
  16. I've had exactly this. It caused anxiety and random adrenaline rushes. It forced me to stop exercising altogether - since then I've been trying to build up my physical condition by slowly increasing steps.
  17. I’m new to the forum and have recently(after 6 years) been diagnosed with POTS/Dysautonomia. I use to be a Fire Captain and this change in lifestyle kinda sucks. While doing some research I have discovered that RECUMBENT BIKES seem to be one of the preferred exercises for POTSies since being upright can be devastating some days. I also have my dogs which are my family and want to take them out to get there exercise and me out of the house. Has anyone been able to get a Recumbent E-bike prescribed by their doctor? If so had did you do it?
  18. I have had several cortisol level tests with samples taken 4 times a day. My pattern was the reverse of normal—very low in the morning and increasing to its highest level at night. This corresponds with it taking several hours in the morning to “wake up” and having a very hard time getting to sleep at night. Apparently other Dysautonomia pat have a similar reverse cortisol curve during the day.
  19. I have posted in the past about just completing cardiac rehab using a program which was individually designed for me with Dysautonomia in mind. I could never have exercised daily though as each session required days to recover from. We worked out a program (which was extremely helpful) of sessions twice a week, using only recumbent machines and with a five minute rest period after every few minutes of exercise. At first it was after 2 minutes and by the end it was after 6 minutes. I am continuing this program at a local gym. I increased my aerobic exercise time by about 1 minute per week and this worked for me. I was able to double my exercise capacity after 36 sessions and gradually the post exercise “payback” diminished and has now nearly disappeared—this is a huge improvement! Please realize that most doctors will not understand the problems that Dysautonomia patients have with exercise.
  20. I thought I'd give it a go as I'd read it helped a lot of people. My doctors aren't really interested in helping me with POTS and barely believe the condition. Typical NHS stuff.
  21. Cortisol is tricky. My doc said the test needs to be done at 8 am and can't be done if you have been on a corticosteroid in the last few months. I have always wanted my cortisol tested at noon, 4, 8, midnight and 2 am because I think mine are off, but this isn't a test that is done... at least that is my understanding. I bet if we all got that test there would be eerie similarities. I had a cortisol stimulation test that was normal. I think the system works, just the control for it is broken in me.
  22. I was told by my endocrinologist that cortisol levels bounce around all day depending on many factors. I had done a saliva test for cortisol at the time and it indicated my cortisol was high. There are specific ways to test for properly functioning cortisol response--I am not sure of the details. I would talk to her doctor or a specialist to get more understanding.
  23. Were you diagnosed as deficient? It's possible you don't need the B12? I was diagnosed as deficient two years ago. When I first started taking B12 (including getting shots) my symptoms worsened. As someone else said apparently this is not unusual bc it "wakes up" your nervous system at the beginning of supplementation. I still take a supplement and I do not notice symptoms from taking it anymore. You may want to have a doctor evaluate if you need B12? A blood test can be done but since you have been supplementing that will affect your test result at least for now.
  24. Well, I am glad it worked in your case but I wish I'd never touched the stuff, it's absolutely ruined me. Constant panic attacks and anxiety, hugely increased heart rate, PVCs through the roof. Just hope people take care with these things.
  25. Hi all, Recently I've been trying out Mestinon. I am very sensitive to meds, and experienced some side effects so it took me 5 weeks to go up to 50mg per day. From 40mg upwards the side effects became too much so I quit - cold turkey, as my doctor had advised. Later I learned many people wean it off which given my sensitivity and strong reaction would probably have been a better idea. Anyways, shortly after quitting I experienced increased dizziness, which was bearable. However, after about 4 days since quitting I started getting sudden anxiety/adrenaline rushes during the night, waking up with extremely high HR, etc. I normally never have these without a specific reason. I'm now at 8 days since quitting and every day the rushes have been becoming worse. I'm afraid that it will lead to multiple day adrenaline rushes with panic attacks and a completely messed up ANS, which I've experienced before and led to significant worsening of all symptoms. Do other people have experience with stopping Mestinon? Did it cause symptoms? Did you wean off or quit cold turkey? How long did it take for the stopping symptoms to wear off? I'm getting a bit afraid that it has caused a permanent change... I'm now considering taking a small dose of 10/20mg per day to potentially stop the adrenaline rushes in its way and soften the cold turkey effect. I would then wean it off slowly. At this small dose I didn't experience side effects previously. Has anyone else done this? Thanks a lot for your help!
  26. @Always_anastasia - you do not have to faint with POTS, as far as I remember only 30% of POTS patients faint. I personally do faint but I have both POTS and NCS ( neuro-cardiogenic syncope, also a dysautonomia ). In my case the fainting is caused by a sudden drop in HR following the tachycardia. I am happy you got a diagnosis, I know how important that is to know that there actually IS something wrong with you! But getting diagnosed is only half the struggle - now you need treatment and that can be a frustratingly long journey. It takes a lot of hit-and-miss b/c there are so many causes for POTS and they all respond differently to medications. Often the first med is a betablocker, for both POTS and NCS. However - it is important to follow the recommended increases in water/ salt intake and wear compression stockings. There is a good book that explains what happens in syncope, and it is written in plain English b/c it was written for patients. It is " THE FAINTING PHENOMENON" by Dr Blair Grubb, MD. Another good resource for patients is the book " THE DYSAUTONOMIA PROJECT ", which was written for both patients and physicians and is a magnificent source of information. You can get it at the website with the same name and both of them at amazon. I wish you the best of luck and a rapid improvement of your symptoms. Please keep us updated on your progress!!!!
  27. We are all different, but I do well on methylcobalamin sublingually, and can’t tolerate cyancocobalamin. Some people can’t utilize it properly and it just "blocks" the receptor rather than giving you the effects of B12. I haven’t tried other types. I can’t think of any side effects I’ve had from methylcobalamin... I’ve been taking 5mg at a time for many many years. I DID have horrible effects from replenishing my critically low levels - apparently your nerves sort of "wake up". I take it in the morning in case it does give me energy as it’s supposed to. Hematologists have told me, and I have confirmed for myself, that a good B12 supplement taken sublingually is as effective as shots. I was the lowest they had ever seen, and I was started on shots which went poorly because they were cyanocobalamin... I brought my levels up with daily methylcobalamin in large doses. If you swallow the tablet, it’s a different story, because a lot of people lack intrinsic factor to utilize oral supplements or food sourced B12.
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