mehaller

The steroid shots didn't help the radiculopathy - on to finding a surgeon. I will say, during the 36 hours after the injection, by lightheadedness was noticeably mitigated. This is significant, because I had suspended taking midodrine during and after that period as I expected to spend a lot of time supine. One of the possible side effects is insomnia, and I was awake non-stop for 48 hours. Aside from the pain, I felt pretty darn good in the dysauto department. Back to normal - pain and dysauto. The mission continues.

Agree with Pistol. Only thing I can add is to perform a lot of your own orthostatic blood pressure tests. CDC has a guideline, but basically, lay still for five minutes, take a "baseline supine" BP and HR (helps to have someone taking notes). The stand and take BP/HR after one minute. Then again at three minutes. I built a spreadsheet with dozens of tests. I am convinced it got me into see a neurologist faster. Your Primary will run you through a lifetime of "elimination" tests, e.g. heart, CT - head scans, liver and kidney etc. You might be able to short circuit that part of your journey. My primary and cardiologists (yes, two) had me wearing monitors, and I did two stress tests in months. Some shops will perform a Tilt Table test but will not have the high resolution BP monitor, just static - plain old BP. Heck, one of my cardiologists said, "Oh, we don't do tilt table tests anymore" Point being, your primary or even some specialists can box you into persistent testing for what they think they know. My spreadsheet included time of day, and notes on severity of lightheadedness on a 1 - 2 - 3 scale. You have to be your own advocate. Again, I'm convinced it got me into neuro faster, and, I kept taking tests adding to the spreasheet. The neuro doc was wide eyed when I showed him the data.That said, it still took over six months to get a Tilt Table Test and QSART. And that was just before Long Covid reared its ugly head and put even greater demand on those services. Good luck.

I've only had an in-clinic steroid shot - basically injected me in the neighborhood. No results for the radiculopathy - at all. Next week I will get the long awaited steroid injected directly at the nerve location, CT guided. First time. I know it works for some - sis in law has had it twice for severe stenosis, each one lasted her about 3 years. Fingers crossed.

After learning I am not a candidate for IVIG, my neurologist (VA/OHSU) wants me to be seen by a neuromuscular specialist for my adrenergic orthostatic hypotension. Interested to learn if others with OH have gone down that road. Better health to all in the new year.

After waiting 17 months for the VA to mess up three blood samples sent to Mayo, I finally got the results - negative. So, no IVIG for me. Awaiting imaging guided steroid injections for L5/S1 stenosis to see if I can get back to exercising - which was showing some decent progress a year ago. If injections don't work, then it'll likely be surgery - which should be endoscopic. Every step through the system is so slow. Oh well. Curious to hear about hydroxy....

My first vaccine in two plus decades was MRNa in April of 21, which I willingly took. I was periodically and mildly symptomatic with "something" for a year prior to that. By mid May 21 I was flat as a pancake. I couldn't stay on my feet for five minutes. Initial diagnosis was thought to be POTS. A year later after chasing doctors and tests the final diagnosis is Adrenergic Orthostatic Hypotension. I'm not taking any more vaccines.

Not enough steam left for crabby... I hope to learn more next month. Seven months ago my neuro told me to try P/T, but we may have to involve a surgeon. I balked, no, no surgeon thank you. After P/T only worsening the neuropathy, I find myself learning the lingo of surgical procedures. Amazing what a little pain will do to change an attitude.

I've been bumping along in a modestly improved state from my adrenergic OH. All things arthritis and ankylosing spondylitis didn't take a break when I became significantly symptomatic with AOH. Imaging revealed a bulging disc and stenosis L5-S1 causing radiculopathy. Fifteen weeks of physical therapy plus diligent at home P/T hasn't alleviated the radiculopathy - pain. In fact - it has only gotten worse. I have now become aware that as my pain worsens, my AOH gets much worse. Question: Is anyone aware of a linkage between pain and dysautonomic responses or "flares" (if there is such a thing)? Thanks in advance

I used to go straight from the table to bed or couch. Even smaller meals. No caffeine, alcohol, gluten... etc. That was 13 months ago before meds. I'd already been forcing fluids but was mostly chair -bound. Doc put me on midodrine and by September of last year I was starting to claw my way back. I gad to back of midodrine due to headaches but that coincided with more exercise, meager as it was. Today I am about 50% "back" from acute onset two+years ago (subsequent to my second Moderna jab). I'm doing four miles a day on my recumbent Ex bike and lots of rehab stretching for spine issues. It's a delicate balance challenge. Push too hard on the bike and it triggers an adrenergic response that can cause a two to four day crash, including post prandial presyncopy. I forgot to wear compression socks (first time in 18months) a yesterday and I am still wobbly, couldn't finish dinner. Counting my blessings for the recovery/progress I have made. Always on the lookout for the next triggers to avoid. Hang in there. Ramblings du jour.

Thanks Sarah. No joy so far. I found him on Twitter, but - me no twitter, tried, can't get in.. I'll go through the university

A DINET post popped up on Facebook regarding Long Haul Covid and PLEX treatment. It was a study outo of Adelaide, Australia. From what I read, it sounded promising for long haulers with POTS symptoms. Naturally, I lost the link. Couldnt find it here or on Facebook again.... Anyone see it and have a link NOT in Facebook? I used search terms "Plex, plasmapheresis, Adelaide, Long Covid." No joy.

My official Dx is adrenergic orthostatic hypotension. I've done dozens and dozens of othostatic BP tests and frequently pop into the POTS world with HR bumping 40 BPM. This did not happen with my one and only TT Test. Five minutes into that test the continuous BP data failed to register. My testing also shows hypo-tension. My neuro says there's no such thing as a hybrid, but also said that the treatment is the same, which is midodrine. I have made progress - I'm far better than I was a year ago pre Dx and meds. I can make it through fixing breakfast and not getting the post prandial crash. I spent a few hours outdoors recently moving dirt - a wee bucket at a time with lots of rest stops in between. However, the doc is ramping down my modest 15mg per day due to headaches - head CT is next to make sure I don't have any surprises. We'll see how I do on the reduced meds. It took me over two years to get a diagnosis and close to two years to see a neurologist. My second face to face with him was yesterday. This after months of ghosted phone appointments. We kissed and made up and I feel we had a great discussion and game plan going forward. Keep at it. If you don't persist, you won't be heard.

Your story sounds so familiar. I was diagnosed with Adrenergic Orthostatic Hypotension. But, I've taken dozens and dozens of orthostatic BP tests and on any give day I'll have the POTS 30+ HR jump after sixty seconds standing from supine test (five minute chill). Or, I'll test with low Systolic. I had been improving since October, able to get through the grocery store on my own without needing to sit. Until the last two weeks. I backed off midodrine because my kidney GFR was crossing over into CKD territory, and I was getting headaches from 15mg/day - weird random headaches - showed up in an instant - then go away after ten to 30 minutes. Over the course of a month - down to 7.5 to 10mg/day of midodrine my headaches went away, but the light-headedness returned, as did sleeplessness. So, I'm up to 12.5 mg/day - see what happens. I spent nearly two hours on my feet outdoors - nothing too exertive - great. But, I also know I'll be prettty useless tomorrow.. You stated that you probably weren't as bad off as many here. Me too. But don't let that stop you from trying to get better. 1). You're not alone. There are a lot of resources on this site. People like you sharing their stories is more than misery loving company. 2). Your doctors will ignore you if you let them. Keep pushing. 3). Keep pushing

I have struggled to make contact with my neuro at VA Portland. Last convo was mid April when he said staff would schedule another call. Didn't happen. I made three calls - he bagged all of them. I am now in touch with the Dep Chief of Staff office. Not holding my breath. The system seems to be broken. In other news, I made some bulk changes to routine. 1). Reduced midodrine to two 5 mg per day due to headaches. And, reduced water intake to about 50 oz per day - too many night day and night visits. 2). Raised the head of my bed by 7". 3). Started taking B complex, and L - Arginine and L - Citruline combo First thing is that I am getting seven and occasionally eight hours of sleep. This has made a huge difference in my daily routines. I'm on my feet much longer. I have been able to horse my 1000lb ATV mower around on the hillside for two hours, much fewer post-prandial crashes, longer walks, and I don't have to find a bench at the grocery check-out counter. Headaches events reduced. Why start the Bs and L Arg and L Cit? Seems counter-intuitive taking a vessel "relaxer" and midodrine. Why not? Many things have been paradoxical. Besided, I don't appear to have a doctor to brow-beat me. Which of these things worked? Don't know, and at this point I don't care. Now, the but. Prior to my supplements and other actions, I'd begun to have what I can only surmise is some form of neuropathy in my right foot - constant scrunching of my toes, seemingly initiated at the pad below the secnd and third toe. This resolves when I sleep - so far. Some days I want get the drill out and ... Thoughts du jour.

Just curious if anyone else is being treated/tested at this facility. I'm trying to gage expectations with reality. Thoughts?

Update: Midodrine isn't doing much. I'm good for 15 minutes on my feet, as long as I am not exerting any real energy - if I do try any real work - I'll go down, still conscious, but in need of being horizontal.. Headaches are much more common, especially on the meds. Sleep is harder to come by. Tried Stellate Ganglion Block. No joy. At all. VA Neuro doc is completely non-responsive. He ordered blood work to see if I'm a candidate for IVIG. Basic plasma labs already back. Antibody results missing in action. That was Sept 7. The doc has stiffed me on two scheduled phone consults. Hasn't responded to three emails. Called OHSU - he's still there. Total Charlie Foxtrot. I've started selling stuff. Probably better off with estate sale, move light, buy new stuff at destination - at least that's what the boss says. That's all folks

Sorry for the delay in seeing this. I cannot say that I am any worse since the COVID. I can say that the Paxlovid indeed shortened my COVID journey - and did so rapidly. Within a day my mid-grade fever dropped and my respiratory issues seriously subsided. And, the aches were gone. I was amazed how similar the COVID was to the Moderna Vaccine in my spinal inflammatory response. I was experiencing severe pain at every ossified node along my spine. With the vaccine, that pain and fever literally switched off after 36 hours. After Paxlovid, the "off switch" was again pronounced. Weird stuff. Long story short - Don't hesitate on the Paxlovid. My wife dawdled and hemmed and hawed, until it was too late, e.g. beyond five days of first symptoms. She's still having lingering respiratory issues and general malaise. Of course, your mileage may vary.

Update. I did get the Paxlovid, and it indeed knocked back the worst of the Covid. Quite impressive. So far, no sign of rebound either. But, there is some lingering fatigue that feels an awful lot like AOH. But, back on the midodrine and almost back to where I was pre Covid.

Holy Moley. This thing is kicking the living begeezuz out of me. My ususal ten minutes of staying upright is gone. I can barely make it to the loo. Just got my scrip for paxlovid to see if it helps. I'm pretty sure I'd be toast if I had a major co-morbidity - assuming dysautnomia isn't a comorbidity. Does anyone have any reports on Paxlovid and the path to knocking this beast back?

Interesting - if not unfortunate - topic. I have Ankylosing Spondylitis and "other" arthropathies. I used to take adalimumab (Humira) for the AS and it worked very nicely. I went off of that drug about a year ago before I was on the dysautonimia hunt. I suspended on the 1% chance that the drug itself was causing my lightheadedness. Around the same time I went off of gluten. The Ankylolsing Spondylitis pain rebound that I had anticipated didn't happen. It would appear that gluten was likely a major contributor to my inflammation issues. Until I started midodrine. I have had enough imaging that I know which of my vertebrae are ossifying etc. So, my question is whether others have experienced significant inflammatory responses with midodrine?

DINET's FB page posted a link to FDNOW video featuring Dr. Berish Ruben which focuses on the use of rosemary extract (carnosol) for those who suffer from FD. Anyone else have a gander at this?

My understanding is that it is a reboot/reset of the sympathetic NS, which is what is triggering the para response. My doc and I went over this at length. He's done a 1000 SGBs, PTSD, trauma, dysautos, and more recently, long COVID folks with dysauto symptoms.

FYI, I just watched a web/video on Familial Dysautonomia, featuring the positive outlook on rosemary extract (caronosol) for FD patients. Also mentioned were positive results using it for osteoporosis. Have a gander

@Sushi He was concerned that it would switch on a more severe parasympathetic response. Again, he thought there would be a minute chance of that, but he's conservative. And thorough. I don't think I have ever had a doctor interview me for two hours. So far, the reaction is as was assumed. So, I go in for the full block in two weeks.

Thanks @MikeO Haven't tossed in the towel. Went to Portland the other day for a Stellate Ganglion Block. Didn't happen. Doc was very conservative and wanted to make sure that he didn't push my parasympathetic response into a permanent state - e.g. go backwards and make it worse - something he thought was a <.5% risk. He sees my symptoms and paradoxical. So, we did a ten minute block (as opposed to a four hour anesthetic - full block). I'll return in a couple weeks for the full block. Give it a shot - pardon the pun.