mehaller

Everything backfired yesterday. I took my second 2.5 a couple hours early - miserable. Standing BP was 150/110. I've never had my BP go that high, not even during healthy guy stress tests. Headaches, more lightheaded than pre-meds. My heart pounded all night - got two hours of sleep. I'm wasted. Oy

Mike O, where in Wisconsin. We used to live in River Falls/Hudson.

I just started midodrine a few days ago. Very low dose, e.g. 2.5mg two times per day, not to be taken at least 4 hours before bed. The first thing I noticed was the first labled side effect - itchy scalp. Not itchy, but tingling. I have also noticed that I am on the edge of leg spasms, so I am keeping my leg cramp (quinine) pills handy. I am about to ramp up to 3 times daily. I am monitoring my BP, and it is up, but not dangerous at all - so far. As for results, I have managed to spend a couple hours on my feet without crashing. Not active standing, just putzing at my shop bench on a project a stranded over a year ago. I'm still ight headed and won't go near my table saw, but I sense an improvment. I was atypically exhausted after yesterday's shop fun. The warnings are not to be supine while the drug is "active" (within half-life). So, I did anyway with my BP cuff at the ready (hey, I'm curious). And sure enough, my systolc BP jacked to 145 from 115. Okay, I can work with that - back to my trusty old IKEA POANG. Another observation that I will call positive is that my legs are tingling. i don't equate this with pain as much as I do stimulation. I was diagnosed with adreneric hypotension. Those little small fiber nerves just weren't getting the message, or, if they were, they were giving me the proverbial finger. My gut feeling is that it's going to work once i balance dosing. What I need to learn is what happens to BP if I get physical, e.g. mowing and weed eating. I am curious about modulating dosings, e.g. more if planning to be outdoors and active and less if housebound due to weather or ... old and lazy. I cannot put my legs up on an ottoman or recliner when this drug is active - and I've found myself "restless legging" e.g. flexing calf muscles, twisting feet at ankles etc. Wooops, sorry about the long winded ramble. Make the best of your holiday.

There's a Facebook group called A Vagus Adventure. It's the only reason I rebooted my FB account from 2010. I tried using a TENS unit and ear clips, per her recommendations. I'd had a TENS unit laying around for back pain issues, ordered some ear clips and was diligent for a couple months. I did not attain any discernable benefit from it. Others on AVA say othewise - some dramatic. There appears to be a modest body of work on Auricular TCN, but not a deeper "blessed" body of studies found in implant stimulation. The TENS clips were cheap enough, and are TENS units themselves. I thought it was worth a shot. Note: If you do try it, watch out for the cheapo ear clips from Amascam or Sleezbay. The cheapos have blade type electrodes/contact points. I tried them - no fun. I then spent a few more bucks on the TENSpro ear clips that have round contact point which has a rubber or silicone cap - much more comfortable and functional. The blade types have a wide flat surface and my ears have none of those.... Good luck.

Had my telechat with my neurologist the other day. Starting midodrine at 2.5 mg twice per day. I asked about this at my initial consult back in November. Probably be two more weeks before I get my script from the VA. Some beltway bandits got $10B to revamp the VAs digital platform. Complete mess. Tried to get the doc to send me a written scrip so I can just buy some. Secure messaging system is down. Anyone remember how America puffed out its collective chest after the Soviet Union choked on its own corrupt bureaucracy?

Here's the whole conclusion. CONCLUSIONThis is an abnormal study. There is evidence of adrenergic dysfunction with development of orthostatic hypotension. Mild reduction in sudomotor sweat response isolated to the proximal leg is very likely to be technical in nature, but if not, taken in combination with adrenergic dysfunction would raise suspicion for possible autonomic neuropathy or synucleinopathy. Cardiovagal function was preserved, and there is no evidence of POTS. PVCs were also seen. Clinical correlation is suggested. ABnormal Study. Reminds me of Eyegore in Young Frankenstein. Was Frankenstein the first TTT?

Demanding a quicker turn-around is probably a fantasy. I'm caught between dueling beauracracies of the VA and OHSU. There was sign of orthostatic hypotension, e.g. I dropped from 120/80 to 90/70 "with a corresponding rise in HR" which she did not define. I allowed myself to get pixxed about all this early this evening and nearly passed out. That's happened a couple times recently, e.g. when I get excited I crash pretty hard - a couple times into near-full-syncope (soft landings and brief blackouts). I am assuming there's a SNS response hiding in there.

Well, I just saw my tilt table study posted on my OHSU account. Not POTS but dysautonomia but, and but, and the best part - continuous BP function failed after five minutes.. recommends retest. And I still have to wait another ten days for my neurologist to tell me it'll take another six months for the same test.... These guys are probably not going to get a positive review on Yelp.

There will be no adjustments. I gave that up 40 years ago. I'm a big fan of acupuncture, but nothing worked for POTS. He's a physician, chiro, and naturopath. He's had "mixed results" with long covid folks, but more than less. I haven't had Covid, but I started crashing after the second jab. I'll know more on Monday.

I already am. In discussions with a Physician/Naturopath/Chiropractor who does SGB. I'll know more on Monday. The perpetual referral merry-go-round is making me dizzy.

Anything to report on SGB? What did your neuro say? I've found a guy who has done a lot of SGBs and may take the plunge. He's treating a lot of long-haul Covid patients who exhibit dysautonomic symptoms. I'd ask my neurologist about it but he wouldn't reply anyway.

I reached out to OHSU to find out the status of my tests - taken on May 16, "nope, she hasn't gotten to yours yet, might be another month". Yikes! This is the best Oregon has to offer? So, tests recommended at the end of November, took until mid May to test, and it'll be July before I hear anything. Trying to find a bright side here. Oh, I know. The best part of Dysautonomia is that when I get angry, I almost pass out so nobody has to listen to me bixxh about it. Kinda hard to do stand-up when you can't stand up..? I did a stand-up routine at a Dysautonomia Convention - I had 'm rolling in the aisles.

Tested 15 days ago - still awaiting interpretation. Told not to expect communication until June 21. Depression always at the door. My wife wants to move 2000 miles back to hometown - near her family - closer to a Mayo (as if I could get in). But, she's right - one sone would be within two hours. But the thought of having to move in my current state is overwhelming. PTSD roars back - hard to practice what helped for so many years. Silence from the doctors does not inspire optimism.

I was mildly and infrequently symptomatic prior to second Moderna last April. It had started at the end of 19 with serious gastro stuff, the worst of which manifest with chest pains and lightheadedness - but I was still active. In early 20 I suddenly couldn't eat, lost 30 lbs, and had a bit more lightheaded episodes. The Covid hit, and testing came to a halt. By mid 2020, I had gotten better and some tests were cancelled - Covid - who wants to go into a hospital when you're feeling better. After Moderna II, my May 21 outdoor painting and home projects came to a halt. By August I was searching online for answers - after the myriad other tests, e.g. EKGs, Esopho-scope, heart monitor, this, that, other. Found Pete Rowe's one pager on POTS - lights went on. Every doctor I mention the vaccine coincidence to - looks away - no comment - taboo. Good luck - thanks for the post

Just curious. We all know about the diagnostic process of elimination sojourn imposed on what we ultimately learn is dysautonomia (maybe). I had to wait 90 days after my primary and cardiologist got around to referring me to neurology. My first - and only consult with VA/OHSU Neuro in Portland was in November 21. A preliminary dx of dysautonomia and perhaps POTS was made, and autonomic tests were ordered. I just had the test on Monday 16 May - two weeks earlier than initially scheduled. And now I still have to wait until June 21 to get the results and a phone consult with my neurologist - whom I haven't heard from in months - in spite of my outreach. To be fair, the dance macabre between the VA and OHSU ate the first month. Is this normal? The QSWRT and tilt table and valsalva tests (and equipment) doesn't appear to be rocket surgery. The tech/nurse did say that their work load is double due to long haul Covid demand. But it was all of 90 minutes in the "lab" which wasn't much larger than my bedroom. I don't get it. My wife wants us to leave Oregon and move back to MN to be closer to Mayo. I'm finding it hard to argue with her. Especially since I'm getting much worse. Took my first nose-dive last week - soft landing, but I was out. My normal ten minutes upright is now closer to five, and the recovery time is closer to an hour - feet up and flexing. Exercise tolerance is nil. I get most of my exercise running to the loo - eight grams of salt per day and a gallon of water and all that. Back to the nose dive. I have never done a full-on syncope. I always have gotten plenty of warning in order to get low/horizontal. This incident happened immediately after I lurched out of my chair to chase my DIL's cat off the kitchen counter (hey - it's how I was raised). A minute later I too my dive on the way to my bed. (I swear - the cat did it on purpose...). So, was that a sympathetic or parasympathetic response? Thoughts? Floundering on the Southern Oregon Coast

I can crash pretty hard after eating - regardless how much I eat. It's worse at the evening meal, and even worse if I managed a modicum of exercise in the afternoon. I haven't had the opportunity to discuss adrenergic anything with neuro - they're not at all responsive - at all. I've been waiting for my tilt table and other neuro tests since December - won't get into OHSU until June 2 - won't hear back from the doc until end of June. I have abandonment issues.... Probably have to leave coastal Oregon - and Oregon completely and go back to Southern MN where my wife has family - 90 minutes from Mayo. I guess loathing the cold winters and skeeters in summer won't matter if I'm a living room ornament.

Thanks for this thread. I've been pushing the salt and water, and my HR doesn't spike as it used to. But the pre-syncopy and brain fog and weak legs are the same. Slight improvement in staying upright a little longer, but the penalty for that success is major fatigue - ye old yo yo.

Thanks - this helps.

I've had just three of those types of events. Twice from people I have met only two or three times socially - friends of friends stuff. First time was in the grocery store while I was letting the cart hold me up - I told the gut to walk 100 yards in my shoes and get back to me. Second time was in the hardware store where I had to grab a five gallon pail and flip it upside down to sit on, and I told hime to take a couple dozen blood tests, see six specialists get irradiated five times and still not have a definitive diagnosis - and get back to me. Third time was just recently when waiting in line for a restaurant (yeah - a post COVID outing) and I had to ask a youngster for his seat on a bench. Twirp nearby - perhaps related - asked me what my problem was "ya look healthy enough". I told him to look up Postural Orthostaic Tachycardia Syndrome or Dysuatonomia - and get back to me. Next time will be much more truncated, beginning with go and ending with self. We're not on this earth to take garbage from people, and those folks need to know that. Find your own voice.

Thanks all for the comments. I don't expect miracles. I am just trying to get an edge on exercise - which so far ... meh. I did have a great day last week where I was able to spend an hour in the garden with only one feet-up respite in a zero-gravity chair. Very encouraging. But, the next day I was wiped, and it's on those days that I feel I could get some value from the sequential foot/calf/thigh compression sleeves. I still don't have a dx yet, awaiting tilt table and other autonomic tests. I will say that my orthstatic BP tests are showing an improvement in HR bumps, down from mid 30s to mid 20s. Water and salt are all that I've been advised to take pending the painfully long awaited Autonomic battery of tests. It seems all those specialty labs are swamped - long haul covid folks seem to share a lot of POTS symptoms - so I am told by the few who would speak. I know I am better off than many folks with POTS - I can still manage a shower, and kitchen detail for ten minutes at a crack, needing only five minutes off my feet to venture back to cooking for the two of us. I need to figure out if I can get better enough to get back outside - my sweetie has taken on all the maintenance tasks, and that isn't sustainable for her either. @RecipeForDisaster, can you share which brand of sequential leg sleeve system you use. Also, none that I looked at nor the myria of useful "un-boxing lookie what I bought" youtube reviews really describe the sequential aspect. Does yours cycle from bottom to top over X minutes, or is it just at initial inflation? Thanks again for the responses.

Does anyone have any experience with leg massage sleeves - the type that velcro on your thigh/calves/feet and then pump air to provide active compression? Some have heat. Presently looking at a model called "ReAthlete". I get some relief from self massage while wearing thigh high socks. Just thinking that cycling compression might retrain those little valves in my legs. Thanks

At the onset of my symptoms, my vision was unpredictable. One day I'd take my glasses off and voila - I didn't need them. Next day I needed them. Rinse and repeat. However, just in the last couple weeks I find that my distant vision has taken a turn for the worse. No noticeable high frequency "movement" thankfully.

Had episodic POTS symptoms prior to second Moderna. Been downhill ever since. The transistion was dramatic, e.g. within days after the initial reactoin to the shot, e.g. aches and short term fever. Constant postural lightheadedness and thirst, heat intolerance, what I thought were gastro-induced chest pains etc ensued with a vengeance. I'm lucky to remain on my feet for ten minutes - sit, or fall. I recover well with leg crunches abdominal contraction/flex. My primary and specialists all look away when I bring it up. Silence. Again, I did have monthly and modest symptoms prior to Jab II that I wrote off to my late sixth decade. Neuro in November conditionally agreed that it's POTS, pending more tests, now Covid delayed...again...and again....

I have had a couple days now of salt loading. I don't think I've hit 5000 mg daily - lost track (still waiting for scrip). Also started wearing my comp socks again. I was able to spend a lot of time on my feet yesterday - nothing strenuous. So, thigh high socks are on the way, and hopefully I can tolerate the salts. Oddity du jour. I asked my primary about buffering salt, e.g. is there something dietary I can do to deal with stomach issues I get from salts. She told me I should as my GI doc. I did. GI doc told me she doesn't do those things and I should ask my primary or my neurologist. As if I wasn't dizzy enough already.. God bless the VA. Get's me all flag wavy 'n shxx. But, all that aside, I had a pretty good day yesterday - gotta stay positive.

My doc is setting me up with 2000mg salt tablets - supposedly buffered. My searches here reveal issues regarding swallowing etc, which won't be a problem for me (I think). My question is regarding salt tolerance in general. I've tried taking 1/8 to 1/4 teaspoons of salt throughout the day, and this is pretty tough on the tummy. Are the buffered tablets easier on the tummy? If not, or marginally, are there other things that can be consumed with the salts in order to make it more toloerable? Any pointers will be greatly appreciated. I'm pretty sure I've had some improvement with basic sea salt. But I can't seem to sustain it, regardless the amount of water I consume. Thanks in advance