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Everything posted by p8d

  1. p8d


    If you are prone to diarrhea be aware Milk of Magnesia and pretty much all magnesium can cause it. I was told maleate is the best salt for decreasing this side effect but I prefer to eat sunflower seeds.
  2. Absolutely correct @WinterSown. I also have a great PCP, gastroenterologist, and gynecologist all familiar with dys. @TCP I completely understand the difficulty in the UK, my husband is English and I have had a few experiences with the NHS over the years. All pre POTS when I could travel but I keep up on news about it because my mother-in-law is quite elderly. She’s 95 and in better health than me. I am incredibly lucky and grateful to have two neurologists who specialize in dys in my city plus other specialists familiar with our special needs. I guess my take away from this discussion is that we all need to do whatever outreach we can to bring awareness.
  3. I have a wonderful neurologist who specializes in dysautonomia and diagnosed and treats me including HR/BP initially. She referred me to an EP who also specializes when BP/HR got too crazy. The neurologist looks at the entire autonomic nervous system which is extremely helpful. A specialist in the field is worth their weight in gold.
  4. I am post-menopausal and hormone replacement therapy caused my BP to go to crisis levels it got so high so I would think the pill could raise BP. Just monitor daily and for months.
  5. p8d


    Did the Dr say why? My autonomic specialist knows I take mitrazipine (same class but different somehow from amitriptyline) and prescribed lexapro. I haven’t started the lexapro yet. She prescribed lexapro because it’s helpful for some people.
  6. p8d

    Exciting new POTS research

    Thanks so much for sharing this! I would love to see the English transliteration if you find it.
  7. Well, I started this thread and for me it actually wasn’t the betas but HRT. It just took me months to figure it out because I started the HRT about a month after I started the betas. Apparently HRT is known for raising BP and about a week after I stopped it, cold turkey, my BP started coming down. This poly-pharmacy game makes identifying what is causing what very difficult. Especially something like hormones that build slowly. I’m just glad that my husband called me fat (!) and I thought the HRT might be causing the weight gain and that made me go back and review my records of meds. Hubby was joking and I weigh 120# but have always been about 105. The lesson is keep detailed notes of new meds/therapies/supplements and hang on to them for much longer than you think you will need them! Not one of my Drs thought about this. I never thought that I would be happy to be called fat 🙃🙂
  8. So I have very carefully identified what is raising my BP and it seems to be my beta blocker, Bystolic. This seems way weird. Anybody else have such a paradoxical reaction?
  9. I was dumb luck too. I thought I had CFS, read a book on it and it suggested ANS dysfunction. I googled, found a specialist in my city, 6 month wait list, called my existing neurologist (migraines) who told me there was an autonomic dysfunction specialist in his group and it was only a three month wait. She diagnosed me 5 minutes, confirmed a week later on a TTT and other tests. Definitely use the list on this site. I am extremely lucky that there are two in my city but many people have to travel. Where are you?
  10. p8d

    Home Alone?

    When my husband travels I always keep my cellphone on me and have neighbors/friends/family “on call” just in case. I can no longer drive but do try to take it easier with everything, exercise, being upright etc. Myhusband makes several batches of food that we freeze so I can just zap it and eat it. Friends and neighbors check in and offer to pick up fresh food which I accept and online delivery of lots of other things. My sister checks in a couple times of day anyway but she’s more vigilant when he’s gone. It took me awhile to learn my limits and to accept help from others but I found that people, even neighbors I barely knew, are happy to help. I pull out the disabled card (I am) if I need an unexpected service like the time a tree came down on our fence. We have dogs so I needed a tree company to come take it down ASAP and a friend put up a temporary one. I probably would have had to wait weeks otherwise. I guess accepting help and being prepared are good for me and my loved ones peace of mind.
  11. p8d

    Position and heart rate

    Congratulations on the baby, I hope you are all doing well. I recall a conversation with my neurologist about that and palpitations and was told it’s something physiological but don’t recall what.
  12. If you can get to the Milwaukee area I know a couple of neurologists, cardiologist (4-6 month waits) and GP (a couple weeks maybe?) that are specialists or know about dysautonomia. Would a medical school have options? Can you call Dr Barboi’s office and ask for names/referrals?
  13. p8d

    joint pain?

    @Pistol is correct. I saw a hand occupational therapist who told me that thee natural sleep position is the fetal position and that we tend to clench our hands. I did exactly that and now use a wrist brace with a pad for the fingers and it really helps. I also second the turmeric. I have an autoimmune disease and turmeric has really helped. @Shannoncr I had a finger that locked years ago diagnosed as a trigger finger. A shot of cortisone and it hasn’t bothered me since.
  14. p8d

    joint pain?

    My immediate thought if it isn’t bilateral is have you been checked for Lyme? Generally though that hits big joints not fingers. Bilateral generally indicates autoimmune issues. These broad generalities.
  15. I found that Differin lotion really helps my skin and the first ever that doesn’t cause breakouts. It even helps my chapped hands.
  16. p8d

    What is going ON !!

    Oh that’s a viscous cycle. I am post-menopausal too and whenever I get an infection and take antibiotics on comes the yeast infection then fix that and on comes the BV. At times, pre and post full blown POTS, this has gone on for months. Very miserable. I do think once the immune system starts tackling one issue it gets worn down and then other fun invaders take advantage. I struggled with three colds in three months last winter. I know my POTS is autoimmune and I have UCTD so my immune system is whackadoo. I have no idea why I beat the last one, just taking it easy on exercise, never stopping though and resting a lot. For vaginal stuff lots of probiotics and yogurt. I am very worried about osteoporosis given how little time I can be upright, I did have my baseline bone density a year before full blown POTS , four years ago now, but GYN is concerned and I will likely have it done again next year. My PT has me on a strength training regime I do at home and with her to try to maintain my bones. I am so sorry that you are going through this. It really sucks and that’s the nicest thing I can say about it all. Just remember that you have fought hard to get where you were and will again. Hugs.
  17. 1) what symptoms do you get when BP gets near crisis levels? 2) if you have hyper POTS and OH at what BP, supine, sitting, standing, do you take an alpha blocker? TIA.
  18. p8d

    Hyper POTS questions

    Thanks, Winter. My cardiologist and neurologist have said go to ER for anything 180/110 or above. Today’s was below so while concerned I am not freaking yet. Very good advice about getting referred from primary. The one thing that will send my BP soaring is dealing with insurance companies. The cardiologist did get me in next Monday and would have sooner if I had been able to travel farther to other clinics. For now I am doubting down on beta and alpha blocker and monitoring and avoiding all stress. I just wish I had a clue why this is happening other than stress over reaction.
  19. p8d

    Hyper POTS questions

    Thanks, Lainey. Mine hit 208/95 last week when I had company and today 168/93 with another brief visit. These are seated. Clonidine helps but I end up taking a high dose and get super stupid and stumbling with a post headache. Definitely the exhaustion. No wonder I need several days off after I do anything. I hope the cardiologist has something that will help. Did you go to the ER at 196/132?
  20. p8d

    Hyper POTS questions

    Thanks for the replies. Anybody get post-high BP headaches? Is taking clonidine or the like round the clock rather than before/during a situation that raises it helpful? I also find that I don’t sleep as well nights after an episode. I’m trying to get as much of a handle on it before cardiologist visit on June 4.
  21. p8d

    anesthesia tips?

    I have only had one procedure under general since full blown hyper POTS and had extra IV fluids but don’t know what drug they used.
  22. p8d

    Wake every hour on the hour

    I agree 100% with @Pistol. I,too, am home bound and on disability, it sucks (that’s not even strong enough) missing every party, dinner invitation, travel opportunity etc. I can’t go to stores to shop for anything, do laundry, cook, clean the house etc etc. I can barely walk around the block on a good day without having to rest for a few days afterwards. You need to listen to your body and learn your limits, what activity and exercise you can do that won’t set off symptoms and slowly, slowly, build up from where you are. A stronger body can withstand the changes in weather, emotional and physical hits that can be very difficult for our screwed up bodies to deal with. Read all you can, print off research articles to share with Drs open to receiving them and find a dysautonomia specialist.
  23. p8d

    Wake every hour on the hour

    I,too, am post-viral onset. I was fine one day, got the stomach flu and have never been the same since. I can tell you the hour my autonomic nervous system broke. I had no idea what was wrong just that something was seriously wrong. I found a group of dysautonomia specialists in my area after six months of seeing every specialist around. The importance of that cannot be stressed enough. After three years and some very serious issues I still am housebound but am much stronger. I didn’t sleep well for 18 months, very similar to what you describe. I had a consult with a different autonomic specialist (I am extremely lucky to have two in my city) and he suggested sleep was vital and prescribed a couple of different drugs before we hit on Remeron. That has helped tremendously. He also suggested water treadmill physical therapy which also helped a lot. I now do physical therapy once a week for strength, balance and endurance. I have been doing that for 20 months. I can’t say enough about how that helps but I still can’t be upright for more than an hour and then only once in awhile but that’s a vast improvement. Like you, at the beginning I was never dizzy, I have never fainted (3.5 years) but had a positive TTT. I still have trouble finding meds that help because as soon as I find a good combination either one or the other stops working or the weather changes or.. As Wintersown suggests, the stronger you the better able to handle these changes. Two years after I was diagnosed I was also diagnosed with an autoimmune disease and treating that has helped with the fatigue and joint pain etc. Dysautonomia is a chronic illness and requires re-thinking lifestyle and treatments. A good thing to do is document all orthostatic BP/HR readings, drugs/supplements taken, activities and symptoms. Records taken a few times a day will help your Drs figure out some things. I also suggest reading The Dysautonomia Project, it really explains things well and has chapters devoted to lay people and medical professionals. There is no known cause and treating symptoms is all that can be done now but research continues and that offers hope. What you describe many of us have experienced, you are not alone and this is a great place for understanding and questions.
  24. p8d

    Balance issues

    I have it too. Developed post full-blown POTS. Some of mine my PT thinks is peripheral nerve issues. That makes sense given I have SFN, so part of my PT is work on a Bosu boards.