MTRJ75

I've come to this thread several times to attempt to find the words to ask a useful question in a coherent way, but always end up deleting it. Maybe someone can figure out how to reword it if it's not clear enough, but some (a lot?) of us have doctors (cardiologists/neurologists) who want to help, but aren't experts in this particular specific condition(s) and what they do know may sometimes be outdated. So... 1) What's the best way to keep up with the most recent therapies/treatments and tests in the field? 2) More importantly, what's the best way to help educate our well intentioned doctors without over-whelming them?

Absolutely. Especially afterward. Workouts that I'd been doing for a long time were destroying me, even after cutting them in half and then in thirds. I would start shaking/trembling and couldn't recover from simpler and simpler things (or at least I though they were). It was pretty terrifying and involved several ER trips in the beginning when I couldn't figure out what was going on.

I have a close friend who has this and ironically, we always remark how we don't have nearly the same symptoms. Anyway, his wife does some volunteer work for some foundation and was contacted by a Dr. Sherene Shalhub out of Seattle, who happens to be a vascular EDS specialist (I think), who volunteered to take on his case. I hope this is helpful.

Considering the wording in that article, the key word seems to be "abuse". Can it be considered "abuse" if you are taking it as directed by a doctor?

@KiminOrlandoI'm in a somewhat similar situation and I'm not worried about it at all. And you'd very likely be using even less than I'm using. I don't speak from a position of authority though, of course, so why not ask the prescribing doctor about it? They'd have to have come across these type of questions before.

I don't think it's a federal thing. It's state by state. If it's prescribed by a doctor it's like any other medication, isn't it? I think for your intent (calming your nervous system for sleep) it should work well.

Ugh, steroids are the worst. Good luck. You may want to check in w/ your cardiologist anyway and make sure there's nothing unseen going on. I know some very young people who have had cardiac issues post-COVID, usually temporary though.

This wasn't a new person. She'd been there as long as I've been going and looked about ready for retirement. One of the things that has always been remarked about when going for bloodwork is that I have suck big, easy veins. I have no idea what happened. Broke into a drenching sweat picking up the laptop today. A little bit warmer, but sitting at home with the air conditioner turned all the way down, still sweating profusely. I think a lot of it may be about the reaction to it too (though not all). If I can somehow stop the anxiety from setting in, I can hold off some associated symptoms, though there was probably nothing I could have done with the bloodwork situation.

I feel like everything we thought we knew in the past is out the window with COVID. I've heard of so many odd reactions and symptoms. I don't think bloodwork means anything in terms of AI either. A lot of people, like myself, don't show, but have every symptom and comorbidity association. Do you have access to a cardiologist? I know there can be temporary cardiac inflammation, which maybe has something to do with the swelling? If you have access to IVIG, go for it. I've read it's been a savior for autonomic issues on occasion as well.

Welp, I'm at a loss then. Back to square one. Lab called yesterday and said they didn't even get enough blood, they have to redo the CBC count just to add another kick in the ***. Told them I'll have to think about it. Both arms are still black and blue nearly two weeks later.

Yeah, so on the other hand, I guess I should feel good that I'm just about back to my baseline already, even if that baseline isn't ideal itself. It's still hard for me to think about those combination of things as being an exorbitantly exertive series of tasks, but when you put it like that.... It's funny, my family generally thinks of me as always sitting on my butt and not even trying to do enough, yet on here, I'm always talking about trying to get away with what is probably too much. I'm thinking there was some combination of wearing a mask while doing all those things in addition to the allergies that complicated matter.

I've been very interested in this and do believe somewhat in the power of neuroplasticity (although autoimmune issues can complicate things, as you lastly mention), but neurofeedback was insanely expensive when I inquired about it. I've gone through and still have access to one of the brain retraining programs with limited success. I've been able to occasionally better deal with my symptoms (though that's easier said when they're not happening), but can't really think of anything it's actually physically improved. Actually, the meditative parts of increase my aches and exhaustion for some reason. CFS/Fibro is complications via similar mechanisms as I understand it so there's a decent chance what helps one might help the other. I read, and may have even posted, the recent Health Rising blog on the Cortene trials, which are interesting, but too far off to get too excited about. I've never heard of a PONS device though. I've tried many exploratory things, some of them quite expensive (exosome therapy, something called PEMF therapy - which was only expensive because you had to keep doing it) with either very little or very temporary results. I've also read about the benefits of vagal stimulation. Please keep us updated if you try any of these things.

I understand 90% of that (though I'm probably going to have to google the word desiccated). You say caffeine helps with blood pooling though? Caffeine can be hit or miss symptomatically for me, but I'd never heard that before. What beta do you take? I've had the most success with small amount of Propanolol early in the day (10 mg), partially because my BP tends to run a bit high, but then also a small amount of Ivabradine (2.5-5 mg) in the evening w/o too many noticeable additional side effects.

When I have my flare ups, I can feel it throughout my digestive system. I usually have to run to the bathroom right away. Usually normal, but that sense of urgency can come out of nowhere too. But the digestive nerves certainly seem to be affected.

Had another episode today, almost exactly like the last one except not as light-headed and no needle involved. Have actually been feeling a bit above my normal baseline last few days. Had a doctor's appt today. Few minutes from the house. Just a check up. No big deal. One flight of stairs up. On the way out, the receptionist asks me to update some new paperwork and for my ins. card. I'd left it in the car. One quick trip out to get it. Down & up stairs again, sit down to fill out paper work and notice I'm drenched in sweat & heart pounding. Now, I know this is the most out of shape I've been in my life, but it was a single trip up and down stairs. I do that all day long at home. Not even hot outside. Mid-70s. On the way home, had to drop off lap top at repair place (hard drive went). Barely got through that conversation. Got home, straight to the bathroom. In and out several times. From drenching sweats to chills and back and forth. Nausea to a sense of urgency back and forth too. The only thing I can think of is that I was wearing a mask the whole time at the doctor's office. Can the trip up and down the stairs w/ the mask on have caused the event? Was this vaso-vagal or something else? It's also "that time of year", but I'd been recently feeling better than my baseline, as I said. I'm guessing some sort of panic set in when my heart rate elevated and started skipping too. Been sweating and freezing at the same time ever since.

Oh, man, this is awful. Slightly hopeful, but 95% awful. Hope you're doing better and symptoms don't linger for you and the family. Were these breakthrough infections?

Yes, @POTSie78I completely get that. This is something I've felt before, but not often this intensely, though this episode came on much more quickly (almost instantly) than usual. I'm still wondering if the blood loss was the prevailing factor and the other episodes are in times of lower blood volume too. Or maybe I was just in a state where the fuss with the needle triggered it and the blood loss just complicated issues. Anyway, I was back to "my normal" the next day. That's not saying much, but better than the original post.

Yes, these are a problem for me too. They usually go in cycles. I'll get them for a few days or maybe even a couple of weeks of misery and then they'll disappear for a few months again. I'm currently dealing with one of these cycles coincidentally. Usually, I'll just try to calm myself and fall asleep for about an hour. If that doesn't work, I'll use some things in the following order. - Melatonin, which I generally take anyway. - CBD oil - Magnesium If none of that works within another hour or so, I'll bring in the heavy hitters. - A low dose of Xanax will generally work fairly quickly. - THC (medical cannibas) - have only used this once and it worked fairly quickly as well. Good luck

That's interesting because she was wiggling the d*** needle around in the left arm very uncomfortably before pulling it out and sticking the right arm. I'm usually okay with needles if the person is quick and clean, but this was kind of a mess. I had just assumed it was the loss of so much blood.

I'm not sure I have any answers except to try and handle the mental part of it as well as you can, even if it means unloading from time to time, but I certainly empathize with you. I feel like I could have written 90% of this post on any given day.

Woke up, didn't eat anything because I had to fast, but had my electrolytes, meds and supplements plus a couple of cups of water in the 2 hours before I left for blood work. Thankfully didn't have to wait in the car long because the weather is ugly today. Went in to have my blood drawn. She couldn't get anything from the left arm, which was weird, so she had to stick me in both arms. After a few vials, she asks if I'm okay because I'm sweating a lot. Yup, that's just my condition. A few more and I'm drenched in sweat, very nauseas and light headed. She has this horrified look on her face. Grabs me an ice pack and water. They couldn't even get the band aids or tape to stick. I really need a place to lie down, but they don't have one. The bathroom isn't a short walk and anyone I encounter on the way looks like they're encountering something from the Walking Dead. They must have been terrified I had COVID. Instead of throwing up, I actually end up having to evacuate and then feel at least a better enough to sit upright, stop sweating and attempt to escape and drive home. A few hours later and I'm still having difficulty being upright. Taking some more electrolytes, not sure what else I can do to get through work today. I think I've learned something about my body today, but not sure what. Well, definitely that bloodwork is something else I certainly can't attempt on my own anymore. But I've had similar symptoms before. In fact, fairly frequently. Does this mean it's due blood volume whenever it gets like this? Because I had even thought it might have been blood sugar in the past. Wonder if this will affect how the bloodwork turns out too.

I know this was a really long time ago, but something I was reading last night made me think of this. The theory being that we are all over-stimulated, but what we actually need in that case might be enough stimulation to overload us, which might then set the nervous system back to normal. This is a different treatment being discussed, but if I have the concept right, it's pretty mind blowing. https://www.healthrising.org/blog/2021/09/03/cortene-drug-trial-chronic-fatigue-syndrome/

I think the LDN has helped a bit, but not as much as I'd hoped. I'm still not getting it from the compounding pharmacy yet though, so I'm probably not getting the same dosage every day. Neuro says he's working on it, but hasn't had time to speak to them. As for the MCS, the Pepcid just didn't seem to be working as an H2 blocking option, but the insurance company won't cover any other H2 blockers the neuro has tried to prescribe so far.

That's good to hear. I haven't had to use it for sleep yet and I'm still learning what it works for (severe aching, nausea) and what it makes worse (light headedness or whatever it is that makes it difficult for me to be upright for long sometimes). Still not sure what the strain is. Hopefully, I can figure out the right dosage too because I sometimes feel I get side effects before results with small dosages still (6-7 drops).

https://www.nytimes.com/2021/08/16/us/vaccination-booster-shots.html?smtyp=cur&smid=tw-nytimes So it seems the new recommendation is for another booster shot 8 months later. I got two shots and advocated for every adult to get their shots, but they kicked the crap out of me for at least a month. If this is going to be an ongoing thing twice a year, I don't know that I'll be able to keep up. This is just awful.