supertired

Any good rheumatologist will admit their “buckets” of diagnoses aren’t exact… if you’ve got some autoimmune markers for MCT, then that could be your underlying. Dysautonomia is commonly secondary to an underlying autoimmune. Ehlers Danlos could potentially fit in your case… common comorbidity with the others… you may want to look into it and see if it may fit.

Also could be an allergy… environmental trigger? Or food sensitivity… Tears will stream out if I eat wheat 🤪😂

Me too…

Thanks... The infusion company hasn't actually run into this before, and they don't know if they exist and/or where to get them. I'm sort of wondering if they may exist in Europe somewhere... their standards for "nickel-fee" everything seem to exist in more places than here in the U.S. I was sort of hoping someone else had run into this issue and figured out how to deal with it. Anybody?

Does anyone know if there are nickel-free SCIG needle sets? I’m trying to switch from IVIG to SCIG, but I’m allergic to nickel and it seems that the standard kits my home infusion company has all have nickel in them. Anybody have any knowledge here? zebra on top of zebra 🤪

This case seems really complicated. I agree with a previous poster that you really ought to get to one of the good specialty/diagnostic centers. If I had to venture a guess, I would say your wife’s POTS is not primary, but secondary to something else… perhaps an autoimmune condition. Every person is a little bit different, but the autonomic symptoms you describe seem a little weird… there seems to be something autonomic happening… but it would be great if you could figure out why. With some blood tests showing that some of the autoimmune markers are popping, plus the previous mention of an MRI result showing some kind of vasculitis, I would maybe look in that direction. The autoimmune conditions are pretty ill-defined, really, so seek the advice of a rheumatologist… they may be able to shed some light. If your wife had Covid and/or any other type of infection, that kind of underlying condition could definitely make things worse for a good long while after. Plus, a vasculitis type condition could explain the ever present headaches. Just a suggestion… add a rheumatologist to your ever expanding list of specialists, plus make sure you’re getting thoroughly worked up by cardiology… ask for a proper ultrasound, a bubble test, and maybe a Level 3 CPET… the heart symptoms to me are most immediately of concern (and life threatening) if someone missed something before they started prescribing all these meds you’ve listed so far. (I didn’t see any mention of a cardiac workup, other than the Holter type monitor?) Also, as people on here will tell you, this is a marathon… it really takes a while to evaluate how a med will affect you. So don’t run through them too fast trying to evaluate so quickly. Start low, go slow… as they say. Plus, we all have good days and bad days, good hours and bad hours. They don’t always exactly correlate with much. (As a systems person/engineer you’re going to want to think that… but it doesn’t always work that way!) Just my two cents… (I feel the need for a disclaimer… this isn’t medical advice, seek the advice of your physician, etc., etc.) The trying to get the correct diagnosis phase of all of this is the worsssssssst… I know you’re feeling exasperated. Keep at it, keep on top of it. See all the specialists you think might be related - you never quite know which one may have the breakthrough help for you. Hugs to you both.

Me too... A change to a vegan, gluten free diet plus probiotics has been a game changer for me. Hard change to make, so I did Sakara so I didn't have to think about what to eat or spend the energy trying to do it on my own. Took a month or two to notice the change... But it's substantial, for bladder and GI issues. Helped me a lot... I figure, I have autoimmune dysautonomia and all kinds of weird sensitivities, so something with food I guess is irritating... Too hard to pin down exactly what, so just switching to a vegan, organic, gluten free, non-GMO, no food gums... Seemed to let my GI system and bladder calm down... FWIW. I do miss cheese

@RecipeForDisaster IVIG can be rough at first for some people, me included... The first go-round can be the worst... If it doesn't get better and easier each round, make sure you talk to your doc about adjusting the days/dosages/rate... That worked for me eventually to get it tolerable, but it took a really long time to figure out exactly how to parse out the dosages and rates... I'd suggest seeing how the second round goes, and go from there... Also, the pre-med steroid dose should really be rather tiny - just enough to keep you from experiencing an allergic reaction to the IVIG... really shouldn't be a big deal for most people. And also, the IVIG injection/insertion site should definitely not have been burning or itching... if that happens again, do please alert your nurses - I would suspect they know what an infiltration looks like - it would have been obvious I think if you'd had that, but you might have been having a reaction to the dressing they used... some may be more likely to contribute to that than others. FWIW.

I have trouble with anithistamines too... worsen the POTS, shortness of breath, etc. Plus, REALLY exacerbates bladder plain. The dehydration, I'm sure, is part of it... but I almost react like I'm allergic to the antihistamines (makes me feel like I'm dying...)... I haven't finished experimenting, but have found that I react to the "dye" in a lot of meds... I hear that's a thing with Benadryl, etc. I just don't do well with meds in general... SO... I don't take anything unless there is an emergency, and then I deal with the side effects while trying to get through... not the greatest solution, though. I was told by my allergist to try one allergy med at a time to see how I tolerated them so I could know which one I can take when I need them... it's on my "to-do" list... maybe you could try that? It's like an elimination diet for allergy meds, LOL.

Terrible headache. My brain feels like it wants to explode out of my head with all of this heat... anyone else? Any suggestions?

@Sushi @DADofPotsSon @GasconAlex Thank all for the responses - I'm curious - were you just "able to exercise", or did the exercise in the water actually make you better on land too?

Has anyone tried swimming and/or aqua therapy? And have you had any successes with it? (Or exacerbations?) I'm at my wit's end thinking of anything *else* that I could perhaps try to make me feel/get better. I have dysautonomia and, among other things, apparently TOS (thoracic outlet syndrome) and/or neuropathy exacerbated at compression points. Because of my pretty severe inability to tolerate exercise and any PT (due to the dysautonomia, hypermobility, and prior sports injuries), my physical therapist suggest aqua therapy (due to the hydrostatic pressure potentially easing the dysautonomia in the water and the general goodness of water exercises for the joints and back). I was in an outdoor pool a couple of weeks ago for the first time since all my issues began, and I definitely did feel better in the water and was able to swim a bit... But when I got out, I immediately had a massive headache and (I guess) neuropathy type pains in my legs and feet. Gravity again? But, like I said, I was able to do *something* in the form of exercise in the water... Then I tried to repeat this in an indoor pool (which had a hotter water temperature), and I didn't feel so great... I made myself try to swim, but I was so dizzy and nauseous, I was worried I might pass out in the pool. Can anyone relate to this? Offer any advice? I'm a little worried that I might have the capacity to exercise a bit in the pool, but the *after* effects are going to be too severe and maybe make me worse. Any experience with this?

@Castorp @RecipeForDisaster - for the Mestinon, I have a script for 60mg 3X a day - I can't really tolerate that though, as I get tremor with it... so I take it "as needed"... like, if I *have* to get up and out the door for an appointment, taking one can make the difference between being able to get out the door and not. For me, I feel the effects of one pill within 10-15 min or so, and it lasts for about ~4 hours. So if I'm having a weak day and need a little extra strength, it can help a bit. It does mask the signs I'm going to pass out though, so I have to be more careful if I take it. And like I said, the tremor it induces is small, but annoying. (and seemed to cause some weird interaction with some nasal sprays I was prescribed and made the tremors really, really bad.) but this seems very unusual. FWIW - for the IVIG, justified by biopsy - you can remind your doctors that if your SFN biopsy comes close to the cutoff - that the cutoff is pretty arbitrary - and that really understanding your results depends on your "starting point". so if there is clinical evidence/opinion that justifies a dx of SFN, that can help not being tied so closely to the exact SFN biopsy percentile. but, obvs, approval depends a lot on your insurance and how much your doc thinks it's justified. i have a really hard time with IVIG... i'm one of those cases that has to have insanely slow rates, and infusions spaced weekly apart. been on it a long time now - i think i'm probably going to be one of the "non-responders", but i want to give it it's due just in case - i've come this far, lolz - would hate to have to start over with the "it may take a year or more to start working" 😕 interesting that the supplements may help neuropathy... i'm excited to start trying that...

I'm in this boat too, but not down the road as far... I've been doing IVIG for a long time now... gave it a shot well past the year mark. I'd be interested in your treatments re the autoimmune cause, if you'd care to share? IVIG is torture for me, so I'm wondering if I should even bother to try something else... like if it's really autoimmune, wouldn't IVIG work? Why try the others? I get a tiny touch of help from the mestinon, maybe like 5 percent. I had to laugh (cry)... I have all those vitamins and supplements in my cabinet too... was getting ready to try some of the acetyl-L-carnitine and coenzime Q10 ones... they are supposed to help your body use oxygen better, right?