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@pistol is absolutely correct. Having said that my case was 100% different. My neurologist suggested SSDI and filled out all the medical paperwork, I was approved first time and in 6 weeks. I think it was helpful that she is a dysautonomia specialist and knows her stuff and I was really, really ill. At any rate, this video is extremely helpful https://vimeo.com/434576980 It’s done by Dysautonomia International and features 2 SSDI lawyers that offer to answer questions via email at the end. I don’t know where they can work but it’s definitely worth the hour of your time.

I asked one of my Drs, probably cardiologist but can’t remember, about high >90 diastolic and systolic not overly high and was told it’s often related to hypovolemia. I have experimented on myself and if I drink a glass of fluids fairly quickly the diastolic does come down but the systolic goes up too.

I get total body sweats whenever I get strong stomach cramps for any reason. My theory, for what it’s worth, is that it involves the vagus nerve setting off sympathetic overload. I get totally hot/sweaty when I have been upright to long too. I remember my father in law who had very bad congestive heart failure getting very hot and sweaty a couple of minutes before he had a bad case of diarrhea. Why you would get that at a certain time of night is a mystery.

I think that’s a very balanced and polite letter. Good for you for being your own advocate. I have similar symptoms, hyperadregenic POTS with NMH and supine HTN and my cardiologist prefers to treat my usually high BP with guanfacine ER twice a day (for high norepinephrine), carvedilol in the evenings for supine hypertension and a tiny dose of ivabradine for HR in the morning. Ivabradine also raises norepi but I do ok on 2.5mg once a day. I have found that an abdominal binder works very well for the OH if I plan to be upright for long because my BP will drop 30 points on standing, then goes up for about 5-7 minutes and then starts to go lower and lower after that. It took years and a ton of meds to find a combination that generally works but weather/flares/overdoing it etc throw it off. PM me if you want to know the brand of abdominal binder. No prescription required!

I had the 2 Moderna shots which my rheumatologist said are known to cause more side effects and I have hyper POTS. I had exactly 48 hours of expected side effects but the only dysautonomia symptom was a slightly elevated heart rate, roughly 10 bpm both sitting and standing. 48 hours later everything went back to “normal”.

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email I hope the link works.

There’s this about immunoglobulin therapy https://sa1s3.patientpop.com/assets/docs/57649.pdf I have definitely benefited from SCIG with fatigue, malaise, brain fog, joint pain.

It’s not good to take any migraine pain kill, including Tylenol, for several days in a row because it causes rebound headaches. I have suffered these and feel for you. I take prescription Fioricet but only 2 days a week. I also use a product IceKap, there are several versions that are just what it sounds like—ice packs in a hat. They work remarkably well. The other thing I recently started is daily LDN. That has decreased my frequent, heat related migraines a lot.

Here’s a good explanation https://thedysautonomiaproject.org/autonomic-function-tests-part-1-valsalva-maneuver/ with video.

Everyone else is correct about wearing them all the time. I have a great abdominal binder that I wear when I know I am going to be upright for long. I do take it off if I am going to be sitting in the recliner and not up and about much. It really helps. I will send you a PM with the brand.

My PCP gave me a script for the lowest dose of alprazolam and I take a quarter to a half tablet in situations like that. I was told that I can dissolve it under my tongue for faster results. I rarely use it but needed to this week and it really helps. I also do breathing with HeartMath which either helps or makes everything worse. I also get out in the backyard and/or distract myself. I won’t check my BP when I am stressed because I don’t want to see the numbers.

I agree completely with @Pistoland @dancer65. I am disabled and house bound and have been for years. I found the book How to be Sick by Toni Bernhardt very helpful in accepting my limitations. Like the others I get down and grumpy when I flare or try to do too much. Then I rest, distract myself and try to remember that I will feel better tomorrow. Another book I read when I am down is The Boy, The Mole, The Fox and The Horse. It’s a short read and it doesn’t really resonate until about half way through but I find it comforting. I reach out to others on this forum that truly understand which helps a lot.

I take it but have hyperadregenic POTS. I have supine HTN and orthostatic hypotension so am a nightmare for the cardiologist. I take the extended release formula and it’s much, much less sedating than the non ER version. I couldn’t tolerate the non ER formula, it really caused fatigue. My BP swings to very high sometimes so we use it and accept the extra OH it causes. It doesn’t do anything for the fatigue so it wouldn’t help with that.

I saw a neuro psychiatrist about 6 months after I got sick and they did memory tests and a bunch of other stuff. I don’t remember why I saw her, it wasn’t for disability. I was in a TERRIBLE state at that time. I had to request to lay down in a dark quiet room mid way through the tests. Definitely do that if you can’t handle it, it proves how difficult it is to simply sit upright for an hour. As @Pistolsays, be honest about how awful this is.

I too am hyperadregenic. My dys neurologist put me on LDN for inflammation because that’s the root cause of my autoimmune disease and dysautonomia. I also am on Plaquenil and SCIG. LDN is the third immunomodulatory drug I am on. It seems to help me. Plaquenil is great for muscle/joint pain, low grade fevers and fatigue and was the first med prescribed for autoimmune disease by my rheumatologist 5 years ago. That lead to the first improvements that allowed me to get to physical therapy. After a positive autoantibody test for alpha a-1 receptors I started SCIG which helped even more but did nothing for BP/HR. I have been on LDN for a couple of months and slowly titrated up to 3mg/day and it *seems* to help everything plus my BP/HR seems more stable as long as I am sufficiently hydrated. It’s not a panacea by any means but I think it brought me out of a 6 week joint pain etc flare and if it is helping with BP/HR it’s the first anti inflammatory to do so. There lots of posts on this forum if you search for it. This might help too https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

Compounded LDN isn’t expensive. I pay around $50/3 months I think. So far it seems to be stabilizing lots of things.

@Bobannon your should check with your Dr about wearing compression hose at night but I was told not to. The things that help me sleep and I didn’t sleep for more than a few hours per night for the first 18 months after I got sick are mitrazipine, 1/4 15mg tablet and LDN. I tried literally every sleep aide there is and an extended release alpha blocker helps to stop adrenaline surges. Recently I have had success with listening to bedtime story podcasts. It seems that I am like one of Pavlov’s dogs, I turn it on and out I go. All I know is that I feel so much better on nights I get a good nights sleep. I still have a couple of days a week where I don’t and it’s worse with a flare.

I have a diagnosis of both orthostatic hypotension and tachycardia because my BP plummets on standing while my HR goes nuts so not technically POTS but close enough. While the technical definition is no BP drop every Dr uses slightly different criteria for diagnosis. I was diagnosed at a specialist clinic with a Mayo trained dysautonomia neurologist. I also am hyperadregenic. Every specialist says that the specific diagnosis doesn’t matter so much because most of the treatment is the same. I wouldn’t discount a cardiologist that understands dysautonomia not recommending autoimmune drugs. When I saw mine the first time he told me I should get IG therapy so those that keep up with research AND are open minded might recommend it. My neurologist ordered it but I had a positive ANA and anti Smith antibodies plus a positive alpha a-1 from Celltrend (Germany, see below). The auto antibodies that are implicated in dysautonomia are not part of the standard array that most Drs, including rheumatologists run. There are no commercial labs in the US that do them. The only one is in Germany and many of us have sent our blood there for testing. If you are close to a research center that is investigating this potential cause and can get on a trial you might get it here. Mayo has an existing panel that checks for some rare things but most Drs don’t know about it and it doesn’t check for the ones currently being investigated (alpha, beta, muscarinic and a few others).

Yep, I had this very badly shortly after I was diagnosed and it got terrible on my TTT. I saw a gastroenterologist that works with dysautonomia patients who works with my neurologist. I can’t take omperazole or anything in that class due to side effects. After an endoscopy I was told it was neuro/ANS and put on gabapentin because every time I ate it felt like I was eating glass. I lost 25+ pounds and was hospitalized and put on TPN for 6 weeks so it’s nothing to mess about with if it’s impacting your ability to eat enough. After a few years on gabapentin I slowly (critical) decreased the dose and got off it. I still get it occasionally recently but it seems to be specific to certain foods/supplements which I haven’t quite figured out yet.

Yes but I was switched to carvedilol for better BP control and it has some alpha blocking too, that was over a year ago. I also take guanfacine ER for alpha blocking. I still think for a beta nebivolol was my favorite. It didn’t cause palpitations or fatigue like the others. It’s cardio selective.

My dysautonomia cardiologist left the state and while there is a nurse practitioner who worked with him with dysautonomia patients I am notoriously difficult to treat (supine hypertension/orthostatic hypotension/hyperadregenic POTS/autoimmune disease all of which the cardiologist was familiar with). I sought out a regular electrophysiologist. He told me that I was better off sticking with the NP that understands dysautonomia than seeing him. At least he was honest.

I had my second Moderna shot almost two weeks ago now. I had a headache the day of and the next day, fatigue, malaise, probably a low grade fever (I didn’t check) for a couple of days but almost exactly 48 hours after the shot I was feeling better. The third morning I was back to my normal. No flare in dysautonomia symptoms except a very slightly higher HR (10 bpm above my usual upright) during the first 48 hours. I have healthy family members who had worse reactions. All my specialists recommended it and I followed their advice.

I have been on this twice. I don’t remember why I stopped it the first time but probably because I developed hypertension which is now only when supine. I don’t know about the discount card but the first time I started this I got it from Canada. It was easy, I just needed a paper prescription and not terribly expensive. My insurance covers it now. I stopped carvedilol recently in the mornings and only take 2.5mg of ivabradine. Even that caused palpitations for a week or two. I found starting at a low dose and working up slowly effective or the palpitations were awful. I take carvedilol in the evenings but not ivabradine but that’s for the supine hypertension overnight.