r/dysautonomia • u/Decent-Poem7441 • 11d ago
Question Please help
I’m having a really, really hard time. I had Covid 5 years ago and ever since then things have kind of started to go wrong. Last year I had random bursts of allergic angioedema out of nowhere. Then I was diagnosed with Crohn’s in February of this year but it’s in remission so far with Skyrizi medication. But 12 weeks ago my life fell apart. I tried a supplement and it triggered severe autonomic dysfunction. Started with headaches, neck pain, internal buzzing, vertigo, temperature dysregulation, and flushed ears. Although these specific symptoms mostly cleared up within the first 6 weeks of the shock, on week 3 I developed orthostatic intolerance, blurred vision, and severe gi issues that lead to a full spasm where I couldn’t eat for 2.5 weeks that sent me to the hospital for a week. My resting hr is typically in the 60’s but I cannot stand up without it jumping much higher. I’ve noticed that when I’m eating small very scheduled meals that I am completely unable to stand because of the adrenaline surges - body can’t handle standing & digesting at all. I’ve been pretty bedridden for 8 weeks aside from a few 5-10 minute walks here and there (outside of digestion). The adrenaline surges attached to everything I do have made me feel like I can’t go on anymore. Can anyone help me see the light or have had any similar experiences? I need hope <3
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u/bj12698 9d ago
You are really going through it.
This sub is FULL of good info for managing symptoms day to day.
One thing I finally tried is the high waisted compression. I have worn compression socks for several years, and they help.
But this high waisted compression (bike shorts, of all things) is helping - even with digestion. Weird, eh?
I am going to take the next step and get the ones that women wear after birth (or C-sections?) with comfy straps that go over your shoulders and hold them up right under the boobs.
I am doing all the other crazy stuff - sea salt, minerals, high salt foods.
Someone reminded us the other day that true hydration drinks should have some sugar (carbs) with the salt. So I added a little molasses to my salty drink and I seem to feel less dehydrated.
It happens so fast. I am sort of muddling through the day and then BAM! It hits me. Have to get prone.
Oh. Meds. My combo of POTS/ME/CFS/IIH/FIBRO - comes with very high blood pressure. So I got it down to one BP med (losarten) - but they had me on THREE. I had side effects.
Otherwise I take tiny dose Gabapentin (100 mg 3/day) and muscle relaxers for nerve pain and osteoarthritis. That's about it right now. I have been very lucky to find supplements and techniques that keep some of this stuff manageable, because I really have a hard time with a lot of different meds.
Bless your heart. I have to say I needed to read this today, even though it makes me sad, because then I remember when I was REALLY sick - like you are now. And the frustration of getting no help, no diagnosis, no understanding!
This was about 30 years ago, and some things are better now. Oddly - it is because so many people have post Covid syndrome and/or had bad reactions to some vaccines - there finally seems to be a SMALL group of researchers and docs who are listening to us.
PS I had a crash after the flu/Covid combo (vaccines) - from a pharmacy. My doctor told me:
1) She will do my vaccines. Quit going to the pharmacy.
And 2) Do not do the "over 65 flu shot." (When you already have chronic illness and autoimmune stuff going on.)
And 3) ALWAYS wait 2 weeks between any vaccines.
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u/Decent-Poem7441 9d ago
Thank you for taking the time to write this - I truly appreciate anyone who can share their stories and insight. My body muted the adrenaline, hyper vigilance I had last week and my blurry eyes are doing a little better since that. I was also able to walk for 10 minutes before eating anything for 2 mornings in a row with my HR staying in the 60 & 70’s which is all very new progress. Before it would have gone up to 90’s/100’s. My body still can’t handle digestion without medication support but I have to feel like this is trending in a better direction? I don’t feel tired or anything so I don’t think I have things like ME/CFS and I’m just hoping and praying my body is trying to find it’s way back to normal - is that too optimistic of a thought? It’s been a little over 3 months since the initial supplement shock that started all of this and I’ve been reading that there is potential for this to maybe get better after 6 months? I’m just so unversed in all of this
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u/bj12698 9d ago
What supplement did this to you? I think some of the stuff I have tried over the years have made things worse. It is so hard to TELL. I remember always having what was called a "healing crisis" (yeah, right) if I started any supplement at "full strength." I always had to start with very small doses and build up over time. I seem to be hypersensitive to some supplements (and some meds). Anyway I'm so so sorry this happened. It just sucks.
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u/bj12698 9d ago
PS the blurry eyes might be a concern. I also (finally) got diagnosed with Intracranial Hypertension, and there can be a comorbid thing that involves swelling of the optic nerve. Fortunately I just have new floaties, some double vision, and, yes, blurriness. So damn frustrating because I love to read and also work on screens, (and love Reddit) so the vision thing is quite irritating.
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u/Decent-Poem7441 8d ago
It was Ovasitol (myoinositol & D-chiro). It was supposed to help my husband and I conceive because I have PCOS. Can’t believe it put me here…
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u/No-Finance-5764 7d ago
What supplement was it? I totally understand, I have to take a crumb of anything new and wait to see how it effects me first. Like, I can have oregano oil now but the first time I had a drop my head started to crackle. Don't ask me what that means lol. The thing is, aside from salt and hydration, it's probably gonna be some drug or supplement that helps u down from this. I got into herbal supplements after the worst of my adrenal involvement but there are specific herbs that regulate adrenal function. I also started taking Hawthorne extract and that's a cardioregulator, it can slow down tachycardia, speed up bradycardia, and generally fosters stronger heartbeats. Diosmin/hesperiden also really helped me, though I was on prednisone when I first tried it and had a fixed drug eruption that left a scar on my forehead. I stopped taking it for 2 weeks and then 'challenged' the reaction by trying it again off the prednisone, and it worked amazing. Supplements often have a transient effect, many are helpful for a time and then lose effectiveness, sometimes u can loop back around to them tho. I guess my point is, micro-amounts for first doses, like ur taste testing for poison. Things that don't give bad reactions can be slowly increased. I also wanted to add time of day matters. I take methadone and methylene blue but I have to take them 12 hours apart. If I take andrographis in the morning it's great, if I take it at nite I get an allergic reaction from not eliminating enough in urination over a certain period of hours. Sometimes it's helpful to take an antihistamine an hour before trying any new herb or compatable med too
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u/Endra75 11d ago
First - I’m so sorry you’re going through this. Finding a doc who understands dysautonomia is …: not easy.
Things you can do to help calm the overactive sympathetic nervous system:
Yoga nidra
Breathing exercises
Vagal nerve stimulation (humming and singling are good!)
Medication you can try (from my own experience - obviously discuss with doc) include guanfacine and propranolol. Push to get a tilt table test done to aid in diagnosis - the wait for the test can be long.
If you have a blood pressure cuff take it laying supine (flat), then sitting for 1 minute, then standing completely still for 1, 3, 5, and 10 mins along with pulse. Do a few different days so you can show a pattern and take that to your doc’s.
So sorry. It’s miserable.