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@Pistolwell, I love the story behind your name! My family should have called me that too! Have you recovered yet?

Thank you so much for posting this! The findings are exactly what my Celltrend tests showed. Alpha a-1 autoantibodies. My first improvement came from Plaquenil and my recent improvement is from SCIG, both autoimmune drugs. Plaquenil did nothing for my BP/HR and I am not yet certain about the SCIG is helping those either but fevers, muscle aches, joint pain and swelling, fatigue, digestion are all better. Now if I could find something for the insomnia that isn’t an anticholinergic I would be happy. I am lucky that my neurologist and cardiologist always believed mine was autoimmune. I did test positive on the ANA eventually and was diagnosed with UCTD and that’s why my rheumatologist started Plaquenil. My neurologist talked him into SCIG and after 10 months of that I am doing things I haven’t in years. I am in no way cured and still suffer terribly from fatigue but if I schedule things appropriately I can actually do some stuff outside home. Again my sincere thanks for posting this!

Oh @PistolI am so sorry the crash was so bad but I completely understand wanting to do normal things again. You should be proud of driving (!) , socializing, eating out as it were. Those ARE huge accomplishments. The payback sucks but at least you now know how to recover. I completely agree about how this sort of thing can be deceptive for someone who doesn’t understand invisible illnesses. They don’t see the days it takes to recover but I am so impressed that you could do those things!

Are you on an alpha blocker to stop the surges? It sounds like the coreg and midodrine are both lowering your HR. You should definitely tell your Dr about it if it’s such a change for you.

I asked my neuro about this a couple of years ago and she said it’s basically like doing a mild valsalva maneuver. I have a grabber and I think years of PT and strengthening have helped. I still get dizzy if I do it too much but not as bad.

@Pistol @Scout have you been tested for Lyme disease? That causes joint pain in large joints that comes and goes.

@Pistolthey told me that I couldn’t have AI disease for 30 years and were wrong so... Have you ever done the Celltrend test? I am just curious. I agree many of us have joint pain but as to why, I don’t know. Guesses that aren’t AI include not enough blood getting to them ala the theory with coat hanger pain but that doesn’t explain achy feet or knees where the blood is so? Do we just not use our joints enough that they get painful when we do? I have no idea but I do think that for many of us this is an AI disease, the Drs just don’t yet know the markers to look for but Celltrend is on the right track. The evidence is just pretty overwhelming with 80+% being female and many young-prime AI years, the joint pain so many of us experience, the random low grade fevers etc etc. I wish I could explain it but I know that my biggest improvements have been when treating my AI. Can your PCP try a short course of steroids to see if you respond? Way back in the beginning I did a Medrol dose pack and felt really improved while on it but my ANA was negative right before and the subsequent couple over a couple of years were too. No one at that time, before I saw my dys neurologist, put 2 + 2 together so I wasn’t treated for a couple of years until the almighty ANA cr*p shoot was positive. I think it’s the testing that is letting us down personally. Any suggestions on what you should do now?

I tapered very slowly without much difficulty over a couple of weeks. I went from a half of a 0.1mg tablet daily to a quarter then a quarter every other day and finally a quarter every 2 days. After that I took a quarter a couple of times a week then stopped. For the fatigue I take modafinil. Good luck.

This disease is so cruel in and of itself that I cannot imagine that amount of stress added on. You have made it through what is undoubtedly one of the most difficult, if not the most difficult, time in your life and that takes guts, courage and patience. Be proud of yourself as we are of you.

One of two things that helped me in similar circumstances was bringing family to Dr appointments and having the Dr explain it. My husband came with me for the first several years and my neuro NP always asked him as well as me if we have questions. The other thing that has helped a lot is getting people to read The Dysautonomia Project book. It has sections specifically for family/friends and another for Drs. It helped me understand what is happening and has definitely helped my family understand. This illness is so difficult day to day that having people doubting is just unconscionable. I am so sorry that all of you have experienced this. At least we have each other.

I do subcutaneous IG weekly at home. No sitting for hours in an infusion center, no bad side effects. I have autoimmune disease and my Celltrend results show one positive. My neuro and cardiologist both are positive my dys is autoimmune. It helps lots of things but not yet my BP or HR very much. I credit it with my improving condition overall but I am still very limited. Having said that I would be loathe to stop it.

@DizzyGirlsI did very well on Bystolic, a selective BB, for tachycardia. I went off of it very reluctantly because we needed better control of my hypertension so I was switched to Coreg and ivabradine. The Bystolic did not lower my BP so it might also be an option for your daughters. The Coreg is great for BP but didn’t quite deal with the tachycardia so we added the ivabradine. The ivabradine is very effective for me.

I went through the exact same thing when I was awarded SSDI. First relief then depression because it’s official that I am permanently disabled. I just had to renew my parking permit and the Dr ticked permanent and after 4 years on SSDI that still was difficult to see. I don’t think about it much anymore but it is still hard when you do.

I am housebound and live in the states. Hubby is going to see his mum in England in the autumn and will buy me one. They aren’t available here. It’s expensive so I was hoping someone might have tried it. I know vagus nerve stimulation was effective with MS. This specifically mentions the ANS.

I am considering having my husband pick up this https://www.parasym.co/ on his next trip to the UK. Has anyone tried it? Thanks.

Thanks for the response. I am thinking of having my husband get one of these units specifically for tvns https://www.parasym.co/ when he is in the UK. We shall see. The research devices have good success with autoimmune diseases.

Mine jumps all over if I don’t stay still and rest it on something.

I don’t remember, it was checked when I was diagnosed 4 years ago. I think 1600-ish upright at that time. I don’t remember the reference range for the lab. I think it’s higher now but don’t want to stop the meds to be retested. Sorry.

A few things I experienced but a question for @Sushifirst: what symptoms do you get because of “too high vagal tone”? I have been on clonidine twice. The first time when I was more classic POTS and less hyper POTS it was ok. I don’t recall exactly why I went off. I think because it was wearing off fairly quickly and the dose of the patch was too high and really dropped my BP in the mornings. The second time was last year and that was a total disaster. I kept needing higher doses to bring down my BP and then suffered extreme rebound hypertension when it wore off. I am talking crisis territory every day. The patch was the same, I needed higher and higher doses and had to supplement with pills at times. I swear it was like my body was addicted to it. The rebound hypertension was very scary. I couldn’t lay down to sleep because I had supine hypertension. I had to wean off my beta blocker before I could wean off the clonidine so the two plus weeks I had to do this were terrible. I started guanfacine ER which is pretty good at controlling the surges but doesn’t do anything for my BP which is what methyldopa did too. I now take Coreg for BP control. It’s a BB. It works pretty well but I still get hypertension sometimes so am currently increasing the dose. I really want to try IV fluids and will be asking my Dr soon if I cannot stabilize soon.

This isn’t related to POTS specifically but is still relevant as it discusses sympathetic and parasympathetic nervous systems. I think Vanderbilt is/was doing a study on this technology in pots. https://www.aging-us.com/article/102074/text. Anybody tried it?

I am hyper pots and the higher my BP goes the lower my HR gets. It only occasionally gets in the 40s, I only have caught it laying down but it gets down to the lower 50s when BP is >145 sys. I just figured it was normal for non-normal me.

@HangingByAThreadI would love to hear of your experience. I am not able to travel very far. @Valymight I ask where you are located? My electrophysiologist has two NPs named Amy and Nicole. I don’t think that can be coincidence. I am in the Milwaukee area.

Hi everyone. Does anyone else get headaches from the sunshine? It seems every time I go out in the sunshine even with sunglasses and no matter the temperature I get headaches. Any one know why? Thanks.

I have been using my Concept2 that hubby bought me for Christmas 2.5 years ago and love it. No valsalva reactions at all.

@Scoutis your Dr an autonomic specialist? I am asking because I think if she isn’t then she’s looking at options to describe your symptoms. Baroreflex failure, as defined by Vandy, includes “Heart rate that does not respond to medications intended to improve it.” Do you respond to beta blockers or corlanor? I think by loose definition all hyper pots patients have some baroreflex failure or certainly dysfunction. I have a crazy gastropressor reflex now. If I drink too much (>8 ozs) of fluid my BP soars. Other times my BP is low-heat, humidity, not enough fluids, mornings etc. what is your gastropressor response to fluids? My BP rises in about 10 minutes and stays elevated for about an hour +. A good article on baroreflex failure is here https://www.nejm.org/doi/full/10.1056/NEJM199311113292003. I have hyper POTS with high catecholamines. I tried clonidine and methyldopa for high norepinephrine but methyldopa didn’t help my BP and clonidine caused bad rebound hypertension. Thanks to @PistolI now take guanfacine for this and Coreg for BP control. I also take corlanor for HR control. It took me almost a year to figure out the gastropressor response I was having and get on the best meds and I did this on my own. My cardiologist just says yeah, that makes sense your ANS is screwed up and prescribes meds although I had to fight for the guanfacine. He had never used it before in twenty years of practice. I know drink a fair amount of fluids (40 ozs) in the first few hours in the morning and then slow way down during the day. 8ozs every couple of hours. We’re all different so experiments on ourselves sometimes is the only answer. Good luck and please let us know how you are doing.