p8d

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About p8d

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    Wisconsin

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  1. p8d

    Persistant symptoms

    I am the same. It’s what really limits my being upright very long. I have hyper pots and I wonder if it’s the sympathetic nervous system kicking in?
  2. p8d

    Clonidine

    @Claireit’s used, as far as I know, only for hyperadregenic pots. I find it extremely helpful.
  3. p8d

    Citrulline

    Interesting. Thanks for reviving this @firewatcher. Please keep us posted on how it continues. What dose are you taking?
  4. p8d

    insect bites & POTS flare

    I, too, have extreme reactions to insect bites. I never associated it with a flare but will watch for it. Like everyone else I rarely go outside in the summer except on nice days. I tested negative for MCAS but have autoimmune diseases.
  5. @Clb75is correct. Rose Dotson worked at Mayo for a number of years in their Dysautonomia clinic and routinely tests for their panel in all suspected dysautonomia patients along with all the other tests done at Mayo and elsewhere. I have been tested twice on the Mayo panel, both negative. I explicitly trust Dr Dotson and her team. They are cautious and research new developments before doing treatments that are new. They are in touch with Drs doing the research, Drs Kem, Raj and others. They are contacting Dr Kem about my specific case because it is unusual before deciding on SQIG. I completely agree it’s good to be cautious but In my case I am refractory to all the treatments we have tried and I have other autoimmune issues so it made sense to test.
  6. @stephaniejo0684 I am one of Dr Dotson’s patients also. I sent my serum to Celltrend a few months ago. I have one positive result. I had way more problems with the lab and shipping than anything else. I mean stupid bad. Please PM me and I can fill you in on how to get all of it done. I see Mary, Dr Dotson’s NP. She is beyond amazing.
  7. p8d

    Headaches and migraines

    @Wearyin my pre-POTS, pre-menopause days I always got auras before migraines. Several different types. I still do get them before migraines but not always. I take fioricet as soon as I get one. Sometimes it helps sometimes it doesn’t. @DizzyGirlsthat’s truly frightening. Your poor daughter. I have terrible knots in my shoulders. My PT is surprised how bad they get. She suggested a hand held massager to work them out. The big ones you drape over your shoulders are too strong for me. I am finding it very helpful. I like that I can control how hard it massages. I got one that has multiple speeds. I also am using Penetrex, a topical anti inflammatory which seems to help too.
  8. p8d

    subQ immunoglobulin

    Thanks @toomanyproblems. It’s good to hear others experiences.
  9. p8d

    Found the ROOT cause AUTOIMMUNE!

    @WearyI only had the Anti AT1R Antibodies come up positive. I also have UCTD, looking like lupus from blood tests. I take Plaquenil for the UCTD which has helped with the fatigue a bit. I am currently considering subcutaneous IG but my neuro is checking with Dr Kem in Oklahoma who discovered these antibodies about my specific issues. SQIG apparently doesn’t cause asceptic meningitis. . @Natopsmy neurologist ordered the blood draw as a miscellaneous test but the lab associated with that organization would not spin it to serum and give it back to me. I had to go to a medical college clinic for that. Apparently places that do transplants do this with some regularity. Shipping was a nightmare.
  10. p8d

    acceptance

    There’s a book by a Toni Bernhardt (I might have the last name incorrect but it’s something like that, brain fog) called How to be Sick that’s very helpful for learning to accept this. She has dysautonomia and the book is written in a Buddhist perspective but is not religious or preachy, just learning to accept and let go. I found it very helpful.
  11. p8d

    subQ immunoglobulin

    @Weary my understanding is that the antibody is to the receptor that tells the peripheral blood vessels to constrict. It’s an alpha a1 I believe. Makes sense. But I am no Dr so... I had to send my blood serum to Germany to a company called Celltrend for the test. There are several antibodies to alpha, beta and muscarinic that Dr Kem associated with POTS that they test for. They are the only commercial lab in the world that does these tests. No Dr order required but I paid ~$500 for it plus shipping which was a nightmare. PM me if you want to know more about that. My neurologist and cardiologist suggested that I have it done and reviewed the results and are suggesting SQIG. Finding a lab to do the draw and give me back the tubes to ship was another hassle but perseverance works. I am 100% refractory to other treatments which I suspect plays into the decision to try it. @toomanyproblems they would start me at very low doses because I am extremely sensitive to most meds. I first have to decide if I want to do it if Dr Kem thinks it may help with baroreflex issues. How has it helped you? BP/HR/ pain/fatigue/ temp regulation? @Runnersmomthanks for the input. Most of that is very positive. I would dearly love anything that helps with the fatigue and insomnia. We are worried about headaches so thanks, that’s very good to hear.
  12. Anybody get IVIG subcutaneously? I have tested positive for a1AR antibodies and UCTD and my neurologist is considering SQIG rather than IV. We think I also am baroreflex sensitive so she’s checking with Dr Kem (Oklahoma) first. I have looked at earlier posts but am looking for more up to date experiences. There’s a nice write up on autoimmunity in POTS and SQIG is mentioned here https://www.healthrising.org/blog/2018/07/27/dysautonomia-international-conference-pt-iv-the-autoimmunity-revolution-in-pots/. Thoughts?
  13. p8d

    Headaches and migraines

    I get the coat hanger pain badly and exercises that stress my neck/shoulders make it worse. Heat, hours of it, help loosen the muscles along with massage at PT. I have a prescription for Fioricet for when it’s really bad. I also have a bulging disc in my neck. I get true migraines if I don’t sleep well or the weather is hot and humid and when I was premenopausal severe ones with periods. The monthly, really severe ones stopped with menopause. I am allergic to NSAIDs and my Dr won’t prescribe opioids so am very limited in what I can do. I also have Raynaud’s so Tristan’s are out. I have an IceKap https://www.icekap.ca/ that helps. I like it because it has a pack for the back of the neck. I generally stay in a dark room with quiet as much as possible. @bombsh3ll what do you do for hypoperfusion and coat hanger pain?
  14. Have you been diagnosed with hyper POTS? Once I get jazzed up by anything, literally, I often have exacerbated symptoms for a couple of days. Cardiologist told me to take an extra dose of clonidine a half hour before whatever I need to do and then as needed if BP is high. It helps if it doesn’t tank the BP too much.
  15. I agree with Pistol. Acceptance was critical though hard. Keep calling the specialists, every week (or more often) and ask about cancellations. If you have a primary care Dr ask for a referral as soon as possible. The more often you call the better your chances of getting in sooner. Have your hospital records sent so that they can see how dramatic the symptoms are. Ask about being put on a cancellation list and call about that. In the meantime ask your primary care Dr to do a poor man’s tilt test, that can at least give you some baseline information. If it’s positive you can try the self care items of fluids and salt and compression garments. Good luck.