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About p8d

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  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. 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?
  9. 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.
  10. 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.
  11. 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?
  12. 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.
  13. 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.
  14. I found that Differin lotion really helps my skin and the first ever that doesn’t cause breakouts. It even helps my chapped hands.