MTRJ75

58 minutes ago, rtoth256 said:

It's been difficult. The hardest part is just keeping her spirits high to try new treatments. When something doesn't work, the air of discouragement is so thick you can cut it with a knife. I'm prone to depressive episodes as well, so it's been "keep myself afloat so I can keep her afloat". There have been times when I broke. In fact, the first post in this thread was from a sleepless night, desperate for help.

Consider looking into one of the various brain retraining programs too. Stress, frustration and impatience are only going to make things much worse. Accept that you're in for the long run, but improvement is possible if not even likely. Try not to get discouraged and appreciate even small improvements. 

The comprehensive timeline in the original post looks very much like what I often bring doctors. Keep doing it. Finding the right doctor(s) is a lot like finding the right medications. It's been a lot of trial and error. If you can't find the most knowledgeable ones, the second best thing you can do is find ones who listen and are willing to get you where and what you need. 

So then my neuro would be inccorrect that there is nothing can be done about SFN? 

I've gotten many strange sensations over the years while lying down, some which have kept me up all night. Most very difficult to put into words. They were actually my first signs (though I didn't know it at the time) that something was really wrong. It has gotten much better over time to the point where I have these issues much less frequently and to less intensity, even though they still do pop up. 

On 10/28/2022 at 9:19 AM, mlardiere said:

This thread is so helpful. I've been hesitant to get the bivalent booster because after my second shot of the initial series ( I got Pfizer) I had a severe reaction that lasted for a few weeks and was my most intense reaction. I had no reaction to the first shot but the second scared me enough to not get the initial booster. I had covid in the meantime but know that I need more antibodies. Has anyone had more success with the Moderna bivalent booster after having the Pfizer previously? I wonder if that will affect my body differently.  Just curious, I hope everyone has a good experience with their vaccines!

I was in the same boat after my initial Moderna booster (2nd shot overall). I did not have a good month afterward and never did go for the 3rd shot. I do see above a response from a few weeks ago that at least someone did have a better reaction to the 3rd shot than their second, so that's encouraging. As of yet, my doctors, who usually do push vaccinations, aren't as adamant about this one. I'm basically waiting to be sure there's one that covers a large ground instead of getting boosted, potentially flaring up and having the shot version be obsolete soon after. 

I'm frustrated. I don't know what to say anymore. I do believe I can and have made my POTS symptoms better with exercise (I think) but it sure feels like there's also something else there that's hindering me. Something potentially more neuropathic or nerve/muscle damage in nature. I probably am doing more than I should when I think I feel well enough for physical activity too because I still somehow think I'm going to eventually get the same results I got before becoming ill. 

I've also noticed I've had more trouble sleeping due to bodily jerks on nights of days that I'm more physically active. I'm really hoping this is something that eventually goes away as a benefit of exercise. 

It's a disability and low income topic, which, unfortunately, coincides all too often with dysautonomia. Nobody's selling anything, so I figured it was safe and useful to post. 

For whoever needs this, I was recently informed of a government discount on internet for low income/disabled people. 

Being on disability qualifies me. It was a very quick application process and then you just give the app # to your service provider after they qualify you. 

https://www.affordableconnectivity.gov/

I'm getting my internet for basically free. 

They're all obviously going to say you need to exercise, but they don't really understand what it's doing to each individual person. Neither do I really. 

8 hours ago, BuddyLove said:

FDR was still trying to walk the last week of his life. 

I can relate. Having been fit for most of my life, I'm down there trying to do pushups whenever I feel like I might be able to. 

On 10/23/2022 at 8:31 PM, MikeO said:

Have you had a endo do any testing as to your metabolism? I get the no energy thing.

Not recently. I've always had very fast metabolism before getting sick. Who knows now? But isn't there something inherently wrong with the mitochondria in our conditions? 

I'm definitely not getting the benefits you guys have described because nothing's changed on an energy level yet. 

@Pistolyour "bad results" do seem a bit like what I end up dealing with just about every time I attempt to do anything sustainably in upright or bent position. 

That's the problem. The post-active symptoms have never changed. What does the good, this is working type of discomfort feel like as opposed the "this is no good" physical reaction? 

Over the last year, I've frequently attempted to start minor exercise programs as I've felt well enough, but consistently failed. Even just branching out into more household chores or cleaning brings back the same physical devastation that stopped me from regularly exercising in the first place (before I understood what this condition was). 

Twitching, shaking, tremors, PVCs, numbness, excessive sweating, pins & needles, burning in every muscle, nausea, light dizziness, etc...

I know my back is supposed to hurt and muscles I haven't used much in a long time are supposed to ache, but I don't think all this should still consistently be happening if any of this is actually helping me. 

So the question is, right there in the subject: How can I tell if exercise (or any physical activity for that matter) is helping or hurting me? 

If it's just a matter of going through some stuff and rebuilding, that's fine. I can deal. 

But what if this is caused by nerve or muscle damage or the theory that SFN damage is shunting blood away from the muscles? Could I just be making things worse? 

Maybe in the end, it doesn't even really matter because I still eventually have to do the things that must be done, even if it does kill me, but I'd like to know if possible to avoid screwing myself up more than I have to if it's not going to help in the long run. 

No. I've been to two Rheumys who won't treat me because of the clean bloodwork. I've refused the lip biopsy because a few doctors who do them told me that they're not entirely without complications. I know of one case gone wrong that resulted in nerve damage and consistent pain. No other doctor wants to prescribe Plaquenil for me either. 

I have Sjogren's (an AI condition), but do not show up in blood work. A lot of people with AI conditions don't. There are now questions about if many forms of dysautonomia are autoimmune. 

I've gone the functional route before. None of the expensive treatments and/or supplements held or were affordable over the span of time it would take, especially now that food costs a fortune. 

I'm not concerned about the BP thing. It went right back to normal and has been every time I've checked since. Just thought it was another one of those weird things. 

The more interesting thing to me (and this could even be a cause of the chaotic BP, who knows?) is the theory that SFN damage is causing blood to shunted away from the muscles. If the body is attacking itself, damaging these, nerves, sending the wrong signals, how can we stop it and perhaps recover? 

My neuro says that I've regained more functionality than a lot of people, which I'm appreciative of, but I'm also apt to be living in a cardboard box at some point if I can't regain more. 

6 hours ago, Pistol said:

@MTRJ75 I too have labile BP with similar extreme fluctuations, and as with you these were taken in medical offices often. Some types of POTS can cause them. Whenever I am in a hospital and they take my BP while lying down it is usually on the low side but increases when I sit or stand up. Maybe it is the same in your case?

That's what USUALLY happens. This was just randomly blasting high for a short period in all manner of measurement. 

As most doctor's offices usually do when they take you into the exam room, they took my BP initially and it was actually lower than expected (112/74). 

Doctor comes in and does his normal check up and wants to check pulse/BP lying, sitting standing. So I lie down and he sends in the assistant five minutes later. He takes it twice while lying down just to make sure it's right. My BP is generally low when lying down. 

I sit for a few minutes. He takes it again. Twice. 

Same thing standing up. 

Then the neuro returns and takes it again after I was sitting for a few minutes. 

Each of those readings were 150-160/100-110

Nobody understands when it was so normal about 20 minutes earlier. He tells me to check it a few hours after I get home and am relaxed. 

I check it as soon as I get home, a half hour later AND a few hours later. All 3 readings in the 120s/80s range. Perfectly normal if maybe very slightly elevated. 

The frustrating part of all these visits is that whatever I throw at him, he generally agrees, but then says there's nothing we can do about it. 

- SFN damage causing the blood to shunt away from muscles, exacerbating symptoms upon exertion? Sure, but there's nothing we can do. 

- The latest research showing and even isolating different antibodies in autonomic dysfunction/fibro/CFS? Maybe, but we can't do anything about that yet. 

I got this e-mail from DI, sent it to my 3 reps. 

Add another one to the list of innovative new treatments that I'm probably too excited about. 

https://www.sciencenews.org/article/lupus-car-t-cell-therapy-remission-autoimmune-disease

I thought the same thing about the carbs as I read that dietary suggestion. More and more horrified as I went down the list. There are obvious replacements for them and not all carbs are bad, but you still may want to stay away from the gluten/bread/nightshade stuff. 

The best hope would be to find a way that corrects the malfunction and stops the wrong signals from going out in the first place. 

2 hours ago, MikeO said:

Not sure what to think. I have done ok with a couple of hard boiled eggs and yogurt in the morning. I have read many times that carbs don't sit well with Dysautonomic folks.

I did dig up a comprehensive Glycemic index/Glycemic Load database out of Australia. https://glycemicindex.com/gi-search/

As well as more possible causes of postprandial hypotension.

https://pubmed.ncbi.nlm.nih.gov/7825766/#:~:text=Possible contributors include inadequate sympathetic,vasodilation%2C and release of vasodilatory

 Possible contributors include inadequate sympathetic nervous system compensation for meal-induced splanchnic blood pooling; impairments in baroreflex function; inadequate postprandial increases in cardiac output; and impaired peripheral vasoconstriction, insulin-induced vasodilation, and release of vasodilatory gastrointestinal peptides. Although caffeine is often recommended as treatment for postprandial hypotension

I have LOTS of trouble with carbs. Especially gluten containing ones. 

That's kind of mind-blowing, considering the other issues caffeine can cause with an off the rails ANS. 

LDN is probably one of the things that's made the most difference for me, but yeah, there are certain things you didn't realize were probably preventing you from just getting worse. 

That's too bad on the Hyperbaric O2. Expensive, unsustained results are just so frustrating.