RecipeForDisaster

I do think it’s at least partly due to low blood volume. Dr. Novak doesn’t seem interested in testing for it - I think he just knows I have it and doesn’t care to prove it, but I really do. IV fluids fixes it for a short time, which I guess partly proves his point. He said "it’s just that your vital organs aren’t getting blood" - that’s my problem. Oh, is that it? But who knows, he’s at a very big hospital, so maybe they’ll get the device anyway. They had a Daxor at Yale, though. I really hope I get to help others by making my data available.

Wouldn’t that be great? He wanted to try galantamine for it, but it kept me up all night even if I took it only in the morning (it made my palpitations worse, too). I may try again. My BP is really low, which doesn’t help. That is not part of HYCH, and is undiagnosed, and makes everything a lot harder to survive and treat. I think HYCH and OCHOS are uncommon because most clinicians haven’t heard of it and don’t have equipment to diagnose it. I bet there are many more. I had it for at least a decade before he found it. But I have more stuff that is not diagnosed. I'm sure I’m one of those 16. I remember him saying that the cerebral Doppler was somewhat experimental and that he was doing research. It’s neat to be able to be part of that - I’m always happy to be a Guinea pig.

Thanks! I was so inspired by that and couldn’t wait to hear how he healed that person, and would use that experience to heal me… um, nope. I hate going to the city, but it’s only a few times a year.

Funny thing is, when I first started seeing him many years ago, he said that he had a patient just like me from Hawaii (he has patients all over the world). I got excited and asked how he helped them, and he said he never figured them out! I will mention that - he might be tickled! It’s a huge pain to go to Boston but it only takes about 2 hours. It’s parking, aggressive driving, and traffic that are the problem.

Yes, thank you! I am super interested in this because I have HYCH (and who knows what else, but autoimmune SFN is one of them), not POTS, and pretty much no doctors know what it is. There is no ICD10 code or anything. I see Dr. Novak in a few weeks and will chat about this.

Thanks, I forgot about that and will revisit it!

I do this, because there is so little I want or need. But you know what? I end up using them for tick preventative for the horses, or gifts for the people who got them for me! It’s silly. However, it won’t be wasted like other things I can’t use. Like my favorite ever, a gift certificate for eyebrow plucking an hour from me. I wouldn’t care about an eyebrow if it was the last body part I had left, and I rarely go near there. Thanks so much?

That is really neat! I had no idea it would work. I am not hyperadrenergic but I have awful sleep, and my heart pounds hard. Thanks!

Dynotags … I can keep my Med list updated on there too. It’s easy to change from their website. It’s great.

Oh yes, got this. I have a nice QR code medical tag that leads to a website where I can customize the content. This way I can be relatively discreet but still have if information available when needed.

I never need anything much, so it’s hard to come up with ideas for family to buy for me. I love my electric kettle, aftermarket heated seat covers for the truck, microwaveable heating pads, wraparound heating pad for my IV arm, weighted blankets, cooling items like freezable face masks, and that sort of thing. I was looking for some wearable pill holders so I can more easily carry meds that I might need in a hurry. I have some keychain type capsule containers already. If anyone has other items that really help their comfort or health, please let me know!

They put you in a special waiting room. Bring lots to read or do!

I’m with you - I don’t plan on more TTTs. My gastric motility study was upright, though. It was only a minute per scan.

I just did one a few days ago! It was egg white, white bread, and strawberry jam. I could eat them in whatever combination I wanted. I am touchy about eggs, so I had it as a sandwich. You just eat it and then get scanned every so often, and it’s very easy. I think I couldn’t eat or drink for 4 hours before the test (it was at 8:45, so that meant dinner the day before for me - rough without coffee!), and I was out of there by about 1pm. I had an IV with hydration running anyway, but IV access didn’t have anything to do with the test.

That would be so cool, if I could measure and trend it myself. I only know how much my vision, hearing, ability to stand, that sort of thing are.

Nope, no vaccines or TB tests have affected my dysautonomia at all. Getting so much as a cold, or infected hangnail, though, makes for a giant flare every time. The flu was absolutely horrible the last time I got it, and while I was vaccinated, the strains targeted that year didn’t match what was circulating.

That is so cool!! I would be very interested.

I have often thought that there would be a lot of helpful aspects to having something people understood, like diabetes or whatever. I don’t bother trying to explain my conditions to most people. I just say I have very low BP, or I tend to pass out, etc. There are not many support groups, or like you say, fun runs, clinics, etc. Most of my conditions are obscure, and I do think it makes it harder on me. I was dosing out my pills last night, and thought I didn’t have more of one of the anti arrhythmics - I briefly panicked, because I know the pharmacy does not stock that med for anyone but me. There are a few of my medications that have to be ordered every time, because no one else is using them.

That’s great, I'm glad there’s another place doing this testing now.

I’m so glad it’s working for you. That’s a low dose - they started me on 10mg and I can’t tolerate that much at a time. My condition keeps getting worse, so yes, I do need more and more of it. But I can’t handle more than 2.5mg at a time, so I take it almost hourly. I avoid side effects and still get the benefits even if it’s a total pain. I really wish they had a low dose extended release, so I could take like 30mg a day but have it release very slowly. It does help me, just not enough. That’s me, not the med. I am on a lot of other stuff, too. Did you have your testing done in Boston? I did!

It’s expensive. I think my copay is $85/month. It does help my orthostatic hypotension and dizziness, but it doesn’t help me when I’m just sitting or laying down, and I don’t feel good in any position. So, it’s very helpful when I need to do more standing, bending, or changing position, but I don’t take it regularly because I find it isn’t that helpful for my usual activities. Oddly, it has not helped my low blood pressure, just my symptoms.

That’s wonderful! I should try a little diltiazem again. I have 30mg capsules. I was on it for rate control originally, but I did better with a beta blocker for that. I can take them together and got the go-ahead. I tried 30mg up to 4 times a day and then switched to 120mg ER. I didn’t remember that nimodipine was good for migraines. I could use that too!

Good luck! You can also say something about CCBs being benign and that they are not exactly a drug of abuse. My specialist thinks galantamine is the gold standard for this type of thing, but my PCP says Nimotop is also very good for cerebral use.

I do feel better in compression of any kind, even physically (locally where I’m wearing it - my legs feel better, etc.). The only downside is the difficulty getting them on and the added potential to overheat in summer.

Maybe wear a kilt (or, okay, regular shorts, like mountain bikers do) over the shorts? I am not sure about the halter, because it’s impractical enough for me! I don’t want to wear that much sunscreen unless I’m going in the water, in which case I will just wear a bathing suit. I bet good money they make shaping underwear for men now. I am not googling that for you haha