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Still high. I have noticed, including on a 24 hour BP monitor that my BP goes very high while walking/exercising. Has anyone offered a 24 hour monitor?

Anybody see Dr B in Chicago? Or know if he prescribes IVIG or SCIG for autoimmune autonomic neuropathy? Thanks.

@MikeO Those are high BP readings. I can see why you had 3 nurses! Can you take your meds twice a day? That’s what I do with an extra beta blocker sweetener in the evening for supine hypertension. I do know that my BP goes up, sometimes scary high after walking around or exercising. I just stopped checking it then with the blessing of my former cardiologist. He said since mine drops while sitting and isn’t sustained it’s ok. 

Welcome back. We were concerned.

@POTSie78 my Moderna side effects lasted almost exactly 48 hours post shot including a slightly elevated HR. Hopefully you will feel better tomorrow.

I will post here what I posted in the other forum. My dysautonomia specialists, both neurology and cardiology, told me that none of their patients who caught Covid (obviously Pistol is an exception) were back to baseline and that none of the ones who had vaccines had flares of their dysautonomia. The side effects are very similar to a flare but they don’t last long generally. I just had my third shot and with all of them I had the expected side effects. Headache was the worst and it was worse from Moderna (my first two shots) than the third (Pfizer) one. I, too, was frightened about getting the vaccines but getting Covid is way, way, way worse than having couple of days of side effects. I have had friends due. I listened to my Drs and not anyone else. I am severely impacted by dysautonomia and have been house bound for 7 years. If I can do it just about anyone can.

So I didn’t get the third shot on Sunday at CVS because it was a zoo and not many people were wearing masks. I went on Tuesday to a small local pharmacy and had Pfizer. First two were Moderna. Pfizer caused similar side effects (slight fever, aches, joint pain, headache, malaise, 10bpm HR increase) BUT they only lasted about 30 hours vs the 48 for Moderna. The headache from Pfizer was much less intense and I managed all the side effects with Tylenol. Honestly, not a big deal and I feel relieved to have had it done.

This article discusses current advice on all available Covid vaccines including the third dose for anyone on immunosuppressant or immunomodulatory drugs including plaquenil and IVIG. Obviously everyone should discuss their individual situation with your Dr but I thought I would pass it on since many of us are on these meds.

https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/american-college-rheumatology-clinical-guidance-covid-19-vaccine/

@toomanyproblems is correct. I had two shots and besides expected side effects the only dysautonomia side effect was an elevated resting heart rate by 10 bpm for 24 hours. I will tell you what my dysautonomia cardiologist and neurologist both told me: none of their patients (300+) had a serious flare of dys symptoms but not a single one who caught Covid got back to baseline. I am eligible and going for my third vaccine on Sunday.

It took me many months, 6 or so because I had to very slowly taper up the dose due to digestive issues. I think we started at 200mg twice a day and I weighed about 105 pounds. I am now at 300mg/day after the swelling and pain went down. That was after about 2 years I think. I still get flares of pain and swelling if I overdo it so be aware of the possibility. The half life of Plaquenil is incredibly long, in the order of months so it takes a long time and usually dosage changes to see the benefits. I know it’s hard to wait! 

My dysautonomia cardiologist had never prescribed guanfacine when I asked about it based on @Pistol experience. He did prescribe it and it definitely helps me but I have to take the extended release form or the fatigue is terrible. I have orthostatic hypotension, HPOTS, supine hypertension and for awhile just hypertension but that’s resolved I *think* since I stopped gabapentin and/or increased my Ig dose. Usually the cardiologist’s go for clonidine as an alpha blocker and I took that for awhile but it caused terrible rebound hypertension. 

You also mention that you were prescribed Plaquenil, which helped you a bit. Did you use this medication to treat POTS-dysautonomia? I have heard  about a  few POTS patients who have also improved with Plaquenil, but I do not know why it may work in some cases.  In fact, to the best of my knowledge, this medication is not a standard treatment for POTS. I would be very grateful if you could provide me further information about this potential treatment in order to discuss it with my doctors.

I was prescribed Plaquenil for the autoimmune disease(s) and started that before the Ig. It is not typically used in POTS. I had several ANA tests over decades pre dysautonomia before one came up positive. That was the third test in 18 months post dysautonomia diagnosis and I just randomly asked my neurologist to order it so my advice is keep requesting an ANA test. Rheumatologists here generally won’t treat without a positive ANA and symptoms. I had swollen and painful joints but nobody checked those until I saw the rheumatologist. I was in such awful shape at that point I didn’t even know they were painful. Because I had the positive ANA and Celltrend tests my neurologist ordered the Ig which does help many symptoms but not specifically blood pressure or heart rate I *don’t think*. I am on soooo many drugs and have had so many changes I don’t really know which helps what. Add in brain fog and well… I do know that my fatigue/malaise/joint pain all improved when I started Plaquenil and again when I started Ig. Adding low dose naltrexone 6 months ago did have a stabilizing effect on my heart rate and blood pressure. I know that because it was the only thing that changed at that time and it’s recent. That decreases inflammation and maybe, I don’t remember, crosses the blood brain barrier.

I am not remotely well, I am still house bound and as @toomanyproblemsstates I often don’t realize how much something is helping until I stop it for whatever reason. There simply isn’t a magic pill or treatment for dysautonomia and for the majority of us, even with specialists, it’s years of trial and error. I am certainly better than I was at my worst (85 pounds, hospitalized, couldn’t eat without severe pain and on TPN for 6 weeks) but can’t be upright for more than 5-20 minutes, weather dependent, but I don’t pray to die every night anymore. I can manage around the house and do occasional light house work but every day is different. Sometimes every hour is different. I am, however, hopeful that long Covid will supply some answers for those of us who have been suffering for years.

I have an appointment at CVS (absolutely dreading this) on Sunday morning. The last two were at a local hospital but they aren’t doing them in as convenient of a location this time. 

How long did you try the IVIG? It took me several months (9+) and a couple of dose changes to see benefits from SCIG (I never did IVIG). I have a positive ANA with markers for lupus and RA plus a positive alpha 1 from Celltrend. I started Plaquenil a couple of years before the Ig and both helped a bit. It’s taken me several years and many, many meds in addition to 4 years of physical therapy (pre Covid) and extreme pacing to not suffer the unrelenting fatigue and malaise. I still flare badly with all the symptoms you listed if I overdo anything even a little bit but the immunotherapy has helped me more than anything else.

I have hEDS too. I have done PT in the past. Please let us know how it goes.

Has anyone gotten the third vaccine yet? Care to share side effects? Issues? Theoretical is welcome too.

I am sorry this happened, it sounds truly frightening. I tolerate hot weather worse as I get older and have come closest to fainting in this environment but so far have avoided it. I have found an abdominal binder helps and just avoiding being outside if it’s really hot and humid. I know that’s not always an option. 

I used to get it every time I turned over. I think it’s common but don’t remember why.

@MTRJ75 how did you do?

@brainchild can you please post or PM me the cost? Thanks.

did ask my previous Primary about this she just said it was male menopause is that real?

As @Pistolsays, it’s not male menopause. A lot of us get it. Temperature regulation is part of the ANS. It’s different from when I got menopausal hot flashes got but I can’t really explain how.

I  am very paranoid that i will lose my license. UW Madison did a carotid massage and came out negative sure that is saving me. not sure what the Docs responsibility for reporting.    
 

I am in Wisconsin and my neurologist told me not to drive but never reported it, I don’t know that they have to here. I think it’s mostly epilepsy? I couldn’t drive for years and still rarely do but I did renew my license a couple of years ago so I can vote. There were no questions about syncope. My limiting problem is that I have difficulty processing moving at speed. I can drive a few miles at less than 35 mph but even as a passenger at freeway speeds I have to look at the floor sometimes. I don’t do well with fast panning and zooming on TV either. There’s a thread about this somewhere from a few years ago. 
 

Ha @Pistoli am still in the pee wee league  but i am taking after your mentoring and hope to be a pro at sometime.

I sincerely hope that with long Covid research there will be decent research and treatments before you you become a pro!

I know that you are a scientist and I am/was as well and not being able to read would be devastating. It will make advocating for treatments more difficult. I hope that you have a good team of Drs and a supportive family and friends. Sending virtual hugs.

It does help a lot. Especially on hot days or when I plan to be upright for > 10 minutes.

My precursor is almost always getting a hot flash. I haven’t stood up quickly enough to get too much of a head rush in years. I was told that with orthostatic hypotension it takes 30-60 seconds to get to the point of syncope and to move slowly and be by something to grab until I know how I will react. I find that if I know I am going to get up in the next 5-10 minutes drinking a glass of water quickly beforehand always helps. It’s the times I have to move quickly or being upright “too long” that leads to problems.

@toomanyproblemsI am sorry to hear about your diagnosis. It makes intuitive sense to me that the two are related. I hope that the med helps and that you can get treated properly. Wishing you all the best. Please let us know if you discover connections/treatments.