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@Pistol I am sorry that you are suffering. I know it well. I tried hydrocortisone 5mg, probably a half tablet a few years back for joint pain from UCTD and it gave me tachycardia. I don’t remember what it did to my blood pressure but I think it raised it. I have found the greatest relief from hydroxychloroquine at the right dose. I know that you tested negative for autoimmune disease but so did I for 30 years before one turned up positive on the third test in 18 months. It might be worth asking for another test?

I didn’t sleep more than a few hours a night for 2+ years until I was put on teeny tiny dose of mitrazipine. I still have a few nights a week where I wake up early or am awake for an hour or more but getting proper sleep really helps.

Ok, for those of you that have more brain power than me, after reading the most recent article should we try Losartan? Anybody tried it recently? Experiences? I have read many of the old threads and like everything it seems like a mixed bag of experiences. I know I have the alpha a-1 antibodies. Thanks.

My BP drops immediately, HR goes up then BP comes up around 2 -5 minutes standing still with HR decrease, then at 10 minutes BP starts dropping and HR goes back up. This is on lots of meds. I think it did something similar on the tilt (no meds) but that experience was so awful I think I have completely blocked it from my mind. Plus it was 5 years ago.

It lowered and stabilized my BP back into normal ranges even in postural change. My HR was a bit higher but not too much. I felt less fatigue but it lead to insomnia (49% of people get it) and quite serious episodes of rage developing extremely quickly. Another unusual side effect.

@Pistol thanks for the article explaining the actions of these drugs. I have a question that I hope that you or someone can answer. If those of us with hyper POTS have too much noradrenaline and “SNRIs... increase in circulating noradrenaline” how do they help? Do they balance the serotonin/noradrenaline? Or? Like you, I had very good results with Bupropion controlling my BP but had bad side effects. Thanks.

@KaciCrochetsas you know I was diagnosed by the same neurologist as you but referred to a cardiologist in the same group when my hypertension got too bad. He and his NP now work on that aspect of things and the neurologist the rest of my considerable PITS issues. My PCP is playing a larger role because my neurologist is so busy. I agree that the way healthcare is organized by body part impacted is crazy. I have found that more holistically oriented PCPs look at the sum of everything rather than the parts.

Dr Dotson is indeed wonderful but a couple of hours away from Madison and likely not in a network covered in that geographic area if someone has a PPO or similar health insurance. @Potsfighter374 most of us with hyper POTS take an alpha blocker in addition to a beta blacker like metoprolol. You can ask your Dr about them. Those typically used are clonidine, methyldopa and a few of us take guanfacine. Like most meds it’s trial and error for everyone.

I hear you and understand your feelings @Pistol I have had better luck with neurologists I think because they do tend to look beyond just the cardiovascular symptoms as they are more common in other neurological diseases. Having said that, before I was diagnosed (by a neurologist) I thought I had CFS and at the first neuro appointment I asked if she diagnosed CFS and got a very curt no! So apparently they too have diseases they don’t believe in. I had initially asked my then current neurologist for a referral to an ANS specialist because I read a book indicating CFS was related to the HPA axis and he immediately referred me to my current neurologist for dysautonomia. So he knew about it 5 years ago. I have been referred to several EPs (when I was thinking of switching) at several different hospital groups in my area that treat it. I think part of it is because the dysautonomia clinic I attend (EP and neurologist along with several NPs) have done a LOT of outreach in the area for PCPs, cardiologists, neurologists, physical therapists etc. I know they held a sort of mini-conference, a one day affair, with Dr Raj, Dr Goodman and others, including the locals that was attended by 300+ people, Drs and patients but geared for Drs. That seemed to really spring board awareness in the area and I have met other patients and schedulers that know about it. Of course the downside is that now instead of every three month follow ups I have to wait a year because the neuro clinic is so busy! So, keep pushing and spreading the word. It does help.

The times I took steroids for my autoimmune disease my HR went through the roof. While I have hyper POTS with hypertension frequently now it wasn’t that bad when I tried the steroids. I now am on Plaquenil and SCIG for autoimmune diseases, including autoimmune autonomic neuropathy, and both have helped lots of things but BP is still rather wildly unstable. Cardiologist just says it’s dysautonomia and chronic hypertension is bad as opposed to my daily fluctuations but to monitor it. I definitely wouldn’t try the steroids with my present hypertension.

As far as I know there are no Drs in the Madison area. Milwaukee/Grafton have two neuros and a few cardiologists. Please PM me if you need the names.

Hey, welcome back @ramakentesh You were very active and helpful when I was diagnosed in 2015. I, for one, have missed your wisdom. @Aaron_Arkinhave you discussed Corlanor with your cardiologist? It’s not a beta but lowers heart rate quite well.

I agree with both @Pistol and @Sushi I have a neuro NP WITH 25+ years experience in dysautonomia who is simply wonderful. I also have a cardiology NP that I adore. The appointments are 45 minutes with the NP plus 15 minutes for ortho vitals. They are located at a nearby dysautonomia clinic which just happens to be 15 minutes from my house of 30 years. I had a hard time finding a PCP after my beloved one moved to urgent care. I joined the state Facebook dysautonomia community long enough to post the question seeking a new one and found a fantastic one near by who is well versed in dys. She’s associated with the local medical college. I got off Facebook right after because I can’t stand it but in this situation it was vital. Just another idea for you to try.

Until you can get in to see a specialist I highly recommend @Pistol’s advice about fluids/compression hose (you can order them online, even prescription strength) and get the book The Dysautonomia Project. It has wonderful advice on how to deal with symptoms, sections for the patient, sections for a PCP and info for family/caregivers. When I was first very ill, on the advice of my specialist, I always drank a 16 ounce glass of water or Trioral rehydration salts 15-20 minutes before getting out of bed, it really helps. I also put on my compression hose immediately on sitting up. As to a cause that’s still a big unknown for many. Some of us develop autoimmune diseases that cause/contribute to it but not everyone and the only autoimmune tests that seem specific to dysautonomia are not commercially available in the US yet. Keep asking for an ANA test to determine if you have an autoimmune disease—they are notoriously difficult to detect. Treating the underlying autoimmune disease, if you have it, helps but there is no cure as of yet.

I take 1/4 tablet of a 15mg pill so a super tiny dose. I have also had really bad fatigue from several beta blockers and other meds.

My only comment as someone with hyperadregenic POTS is about the mitrazipine. I didn’t sleep more than 3-4 hours a night for close to two years when I first got seriously ill. I tried every sleep med, benzo, antihistamines etc and the only thing that helps me sleep is mitrazipine. I have gone on and off it couple of times since I started it and I, too, experienced serious drug hangovers for about a week or so but I will never give it up because nothing else works and I feel much better after a decent nights sleep. I still have lousy nights 2-3 times a week but I guess that comes with the territory. I take a quarter of a tablet nightly. I always have extreme reactions to meds but if I can at least try it for a week or two they sometimes decrease to tolerable levels.

I cannot tolerate high humidity especially with anything much greater than 80 degrees. I tend to feel better in the winter with the exception of aches and pains (joints and muscles) with storm systems.

So sorry that you are suffering @Pistol I am hoping that I feel lousy today because my brought some daffodils into the house for me yesterday in addition to some things starting to flower/bud out outside, I hope that you feel better soon,

I agree completely with @Pistol she knows her stuff. I used to get those out of body/staring experiences when I was at my worst and had overdone anything. I still get them when I flare badly but I never thought they were seizures. I don’t get them unless I am very poorly and right now my stress level is playing havoc with my symptoms. Please take care.

@KaciCrochetsI know we used to have the same Drs and just wanted to let you know that at the time I was mis(diagnosed) as not having hyper POTS in 2015 it was discovered that the lab was not doing the test correctly. After repeatedly complaining about the sweating/shaking/tremulousness/feelings of doom like clockwork around 4 in the afternoon (and after they discovered a problem with how the lab was doing the tests) I was retested and found to have it. I don’t know if the initial test was during the TTT and I wasn’t left prone long enough or what but Dr D at that time listed me as “probable hyper”. I got hysterical after 15 minutes upright which is definitely NOT my personality, I only lasted 16 minutes and they had enough to diagnose me so put me down. Dr D called me stoic during the EMG test which hurt like h@ll so the hysteria was obviously physical. I was diagnosed with the proper test by the NP a few months later. I have been on various alpha blockers to sometimes good effect since but still get lots of elevated BP with activity/talking on the phone /concentration/ anything my body perceives as “stress”. I have noticed since this d*mn virus kicked off that I get quite anxious with elevated BP about 4pm again. I presume that the alpha blocker is wearing off at that time because I take the next dose around 5pm. It might also be why I wake up around 3-4 in the morning recently. So @Abe I have listed a number of symptoms in this. I should note that I had TERRIBLE insomnia and digestive issues (diarrhea) for years which I think might be related to the hyper aspect.

@Pistol does the diltiazem help with the spikes or cause ortho hypotension? Thanks.

@Pistol and I are strangely similar for not being related! On her advice I am now on coreg and guanfacine but they don’t stop my spikes. I spike from anything my body perceives as stress—phone calls, upright too long (varies on fluid intake and amount of time), strong emotions, being in moving vehicles, Dr appointments etc. etc. I tried clonidine which caused rebound hypertension badly, methyldopa which didn’t seem to help and now guanfacine which I like but doesn’t stop the spikes. My cardiologist has me take an extra low dose of coreg an hour or so before anything “stressful” which helps. I have noticed 2 things that directly impact my spikes—fluid intake, I tend to feel weird and HR can be high and BP low an hour before I do something outside the house (I am housebound) so I drink 8+ ounces of water and an hour later BP is 170+/90+, I obviously have to stop this and the other are any drugs that end in “ine”—diphenhydramine, my sleep med mitrazipine and caffeine are examples. Right now I have stopped these and am desperate for a good nights sleep. I see my neurologist this week and will ask about Wellbutrin and next time I see the cardiologist in April will ask about diltiazem. I do wonder about a benzo instead of the extra coreg or diltiazem since mine seem directly related to stress but I know my neurologist is opposed to them in dys. I am on SCIG which helps a lot with many symptoms but not yet BP. @Pistol do you take the diltiazem daily or as needed?

I sway back and forth and feel like I am on a boat at every neurologist visit when they do orthostatic vitals. It’s usually after I have been standing still for 3-10 minutes. I have hyper POTS and it might be related in my case to my BP going up but I am not positive. I virtually never stand still that long except for this check at the neuro’s office. I have done this since I was diagnosed on many, many different meds.

I feel your pain, we all do at times. While I have accepted my illness/life I get the occasional bad day where it feels like too much. Hang in there. As Scarlett said “tomorrow is another day” and hopefully less symptomatic.

Oh I am so sorry that you are going through this. I agree with what everyone else has said. I come armed with articles, relevant sections highlighted, a list of questions and always try to see a specialist nurse practitioner. I have NP s for both cardiology and neurology. They have 45 minute appointments as opposed to 20 for the actual doctors and are both brilliant about dysautonomia. If they don’t know they ask the doctors. If I am seeing my male cardiologist, who tends to shrug and say “well, you’re autonomic nervous system doesn’t work properly” if I have stumped him, I always make my husband come into the room with me. Unfortunately, that helps. I am not being sexist guys, just stating a fact that we women understand well.