p8d

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

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.

@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.

@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.

@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.

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

@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.

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.

@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.

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?

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?

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.

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.

Oh sweetie. I am 5’3” and shortly after being diagnosed at 52 I ended up at 84#. I had no appetite and pain whenever I ate. I saw a gastroenterologist who was familiar with dysautonomia and after dropping 20# in two weeks I was hospitalized for 5 days and had a number of tests and TPN (nutrition and fats) for 6 weeks. I ate several small meals and snacks a day, drank protein shakes (Garden of Life) and was told to eat junk food in addition to a balanced diet, anything to get calories. I ate a lot of sausage and potatoes. The gastroenterologist put me on gabapentin for the pain and now 4 years later with beta and alpha blockers and exercise with a PT I am at 125# and having to buy new, bigger clothes. I will say that I didn’t realize that I was experiencing stomach pain. I know this sounds weird but my muddled mind, when asked if I had pain always said no but then after I would eat I felt like I had eaten glass. It took a cousin who was babysitting me to say that is pain. Are you seeing a specialist? Are you hyperadregenic? As others have said, if I can survive and now weigh so much so can you. My neurologist told me yesterday for the first time that she was really worried about me during that time. The hardest work I have ever done was get on the stationary bike for 3 minutes a day when I got home from the hospital. The gastroenterologist saved my life, please be sure to see your Dr for help. Having gone through that I vowed that I would never go back there and that’s what motivates me to do my aerobic and strength training exercises everyday.

I weaned off extremely slowly over about 3 weeks in May because I had a series of hypertension crisises. My BP did come down and I didn’t notice any terrible effects but I am quite messed up in general. I have hyper POTS which is just surging this summer but between stopping florinef and HRT and upping both beta and alpha blockers BP isn’t going into crisis territory too often. We all react so differently and unfortunately you won’t know until you try. Good luck.

Yep, been there. We upped Bystolic (selective beta) and clonidine which helps somewhat. Clonidine lowers my BP/HR in about a half hour. I still am getting stupidly high flares and can’t find a cause. My sitting/supine can get very high 180-200s/90-100. I was told to take off the compression stockings and pop a clonidine or go to the ER. I avoid the ER/ hospital as much as I can. My insomnia has gone bonkers too but I think that’s the increased alpha/beta blockers.

@Pistol you sound much like me. I have to pre-load with extra clonidine before I do anything. Talking on the phone, exercise, anything upright. I seem to be treating either the high sitting BP or the Hugh HR after being upright for longer than 10-30 minutes. It’s so frustrating. I have a standing order for IV fluids but seem to manage, or nor, with oral.

So, I am extremely sensitive to oral fluids. My BP can rise 20-30 systolic after 16 ounces of fluids in a short time. Recently I am battling high and low BP and high HR with the lows. I am hyper POTS. which has really been bad this summer. I can’t find patterns and am always reacting rather than managing beforehand. Any body else this way or have ideas why? I see the neuro next week and will discuss it with her. Thanks.

Have you been tested for autoimmune issues? My POTS is autoimmune but it took way too much time/money to figure it out. I also have UCTD, possible lupus. Whenever I get run down/stressed, good or bad, my immune system takes a hit and I spiral like this. Rest, rest, rest with moderate exercise and time are all that I have found that help.

Oh @Debbie Rose, what a trial you have had recently. I hope all turns out well. Post POTS I have had an endoscopy and MRI with contrast, no problems. My neurologist said not to have “caines” if possible, same with epinephrine (ok for anaphylaxis). Can you check with your dys specialist to see if they can recommend people/places/drugs? Please let us know how it goes.

I was tested for 30 years for ANA before one came up positive. Fortunately my PCP recommended a great rheumatologist who squeezed my joints in particular ways that I realized they hurt. It wasn’t until I had been on Plaquenil for several months I realized that I had had so much joint pain and that my aching feet and need for better shoes was a symptom. I didn’t know this because it all came on gradually. I must have seen 5-10 rheumatologists over the years. Don’t keep searching! Plaquenil has helped, fight for treatment.

I have the mutation and used to take both. I never noticed any changes in anything. I have also had elevated B12 blood levels for a few years but my PCP isn’t concerned.

Are you still fluid loading and taking salt and/or fludricortisone? Using compression stockings? No drug will help if you are blood pooling and not treating that. I did well on Ivabradine but that was in conjunction with all the other things I listed. I had to go back onto beta blockers (Bystolic) and clonidine because my hyper POTS went nuts. No drug is magical for many of us and many need multiple drugs and years to find a good combination.

Do you have hyper POTS? Have you checked your BP right after getting off the treadmill? Some of the symptoms sound hyper POTS to me. Are you fluid loading sufficiently to prevent blood pooling?

Would your boss read The Dysautonomia Project book? It’s not long and written with information for friends/family in layman’s terms along with medical information for health care providers.