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Super-crash after vac - neuroinflammation (?) and heightened nervous system

lenora

Senior Member
Messages
4,944
Hello @judyinthesky.....Let's see, I may have complicated matters without intending to. I'm on xanax b/c of anxiety at this point. Buspar worked very well in that dept., but then just didn't. So I had to move up into the big league for help.

I couldn't take much more in the way of anxiety than I was already dealing with (got worse with passing of the years...in the early years I controlled it myself), but then became panic attacks, etc.

Now what does help with pain is gabapentin or one of its children, lyrica, for e.g. In the early days, gaba was given to us in huge doses b/c no one knew the right one for us. Even the pharmaceutical cos. didn't b/c it was used for seizures initially. Little by little, and from reports from patients and doctors, the doses were tailored to the patient.

I have rather severe neurological pain from two illnesses (both requiring surgery) that did a lot of damage long before the days of gabapentin. My only savior was ice...and I've written before about Ace having fabric covered ice packs that are most effective. If you haven't read that, do contact me and I'll write it again. That helped numb the pain to almost blotto, but that was it. Nothing else worked and we had nothing for years. Well, gaba did work, it took mos., during which my mind wasn't functioning, but then one day a breakthrough came. I'm now on lyrica and it works very well, although I still have rather high pain levels.

So xanax is used for another purpose, but why put my family through that bit of action if they don't have to witness it? Why put myself through it? At least I have a doctor who and always has believed me, so I'm ahead of the game as far as that goes. Besides, he's heard the exact same type of story many times from his very ill neurological patients to not believe it. So I've been present for all of the meds, not that we've had that many, going back to elavil, which never did anything for me. My advice would be to take what works for you, and to always be on guard for dependence. I used to take frequent vacations from my low dose fentanyl even, but even though it didn't take the pain away totally, I believe it worked synergestically with perhaps gaba or lyrica. Maybe even some vitamin....I don't know, I have no proof and can only say what did help me, or what I was using at the time.

I wish you well, because I remember so well what it was like to be wandering in the darkness myself. Over the years, I'm far more accepting of what is. I don't disaparage anything that people try...perhaps their bodies really require it. If a specialist doesn't know, then how do I? For me this is enough: I'm not a hypochondriac. My family, my doctor and I know it plus a few select friends. I have always helped others, so I certainly try to do the same today....used to do far more many years ago, but now age is catching up with me. Life passes so very fast, and all we can do is our best. Take good care of yourself. Yours, Lenora.
 

judyinthesky

Senior Member
Messages
381
@lenora yes I've been there two years ago already with the intense nervous system activation.. and it's been a tough ride of trying different things that rarely worked. Xanax does.
I've tried Lyrica and it makes me more jittery. Not elavil yet.
Mirtazapine intense eating craves. And I also tend to get too hyper. Hm maybe it would work now. I try medication and usually have intense side effects hence it is very difficult.

My blood pressure is also on the lower side.
 

lenora

Senior Member
Messages
4,944
@lenora yes I've been there two years ago already with the intense nervous system activation.. and it's been a tough ride of trying different things that rarely worked. Xanax does.
I've tried Lyrica and it makes me more jittery. Not elavil yet.
Mirtazapine intense eating craves. And I also tend to get too hyper. Hm maybe it would work now. I try medication and usually have intense side effects hence it is very difficult.

My blood pressure is also on the lower side.

HI @judyinthesky....My BP was super-low for years, and then I experienced early menopause at age 42 and it has gone in the other direction entirely. I watch my diet, but it has made no difference whatsoever, same with familial high cholesterol, etc.

Are you starting on very low doses of meds?. For some of us that's the way to go and it's often enough to treat us. True, they may have to go up with time, but perhaps not.

Elavil is probably the drug that a well versed rheumatologist would try as the first medication. It has helped many people. Best wishes, Lenora.
 

judyinthesky

Senior Member
Messages
381
@lenora have it at home and could try. Will also see what the hospital suggests.
I don't have pain though but maybe it would help.
At this point I am torn between trying to take every medication possible, or trying my approach of last time after a virus with pacing etc. But I was in a much better state then!
 

judyinthesky

Senior Member
Messages
381
Update from the hospital. I've done a lot of tests and apart from beginning hypothyroidism and bradycardia in the sleep study they haven't found much so far.
I also don't think there's going to be groundbreaking help, so I will once more have to deal with this on my own.
I will have to try the protocol here of people regarding excitotoxicity and see where extreme pacing will lead me.

In a Facebook group about the vaccines and CFS there are a few others who have been severely effected, maybe not as much as I have.

So I am thinking the strong involvement of my network system issues and why I am atypical there with CFS could be a hint towards deciphering why some people are hit so hard.
Feels like a lottery! Not relevant until you are the one in the damaged minority.

I have to say I love this forum, great nerds on here, thank you.
 
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Zebra

Senior Member
Messages
884
Location
Northern California
I also don't think there's going to be groundbreaking help, so I will once more have to deal with this on my own.

Oh, Judy, I am SO sorry to hear that. I was really hoping that you'd at least get one or two objective medical findings out of your hospitalization that would serve you going forward.

Honestly, I thought they were going to find evidence of widespread neuritis or peripheral nerve hyperexcitability. They probably didn't even look for that. :-(

Of course, hypothyroidism and bradycardia are significant, and I hope they will provide you with treatment that will make you feel better overall, even though those diagnoses don't explain your primary complaints.

Please keep us posted, and let us know how you are doing after you've had a chance to rest up at home.

Warmly,
Z
 

judyinthesky

Senior Member
Messages
381
Oh, Judy, I am SO sorry to hear that. I was really hoping that you'd at least get one or two objective medical findings out of your hospitalization that would serve you going forward.

Honestly, I thought they were going to find evidence of widespread neuritis or peripheral nerve hyperexcitability. They probably didn't even look for that. :-(

Of course, hypothyroidism and bradycardia are significant, and I hope they will provide you with treatment that will make you feel better overall, even though those diagnoses don't explain your primary complaints.

Please keep us posted, and let us know how you are doing after you've had a chance to rest up at home.

Warmly,
Z

Exactly, they don't explain that. "peripheral nerve hyperexcitability." That sounds interesting have to see how one checks that.
But seems to be defined by muscle cramps which I don't have.
 

judyinthesky

Senior Member
Messages
381
Update, today the main doc was better, because she actually knows more and doesn't put me into the psychological category.
They even talked about anti neuronal antibodies, and I think that's a good thing.

So will see.
 

Rvanson

Senior Member
Messages
312
Location
USA
Hello @judyinthesky & @Rvanson.....Judy, you're probably past the "window'" for using buspar, and who knows why it worked for me, but it did for years on end. But then the day came when it just didnt't work any longer and that day happened to involve having shingles....wretched illness.

So now I'm on xanax and the doctors at the hospital also had hysteria over that fact. Well, I'm going to trust my neuro far more than I am them, and even though I very nicely said that, my xanax was stopped. Probably more to do with the law of the country than anything else. Then, to make things even worse, the head neuro wanted to put me on an even more addictive drug! Fortuntely, Rod caught that one in time.

So in the end I do believe that drugs, herbs, vitamins...any of these things, are very dependent upon how the body will respond to them. One size doesn't fit all.

As far as xanax goes, I think it had the very bad reputation of being around at the same time as the opioid epidemic and then the New England Journal of Medicine came out with how it affected old people. Well, that's another thing....we're not all affected in the same way, and I've yet to see the statistics that were used as to age, etc. Doctors lost their practices to fentanyl use (even when perfectly justified), had to close their doors, patients were left with nothing in the way of help, suicides were high and yet no one cared. So I remain a little burned by the whole affair and don't trust much of anything. This wasn't fair on a lot of physicians who had tried very hard...addicts will always find a way, why couldn't the authorities figure that much out?....and why weren't the pharmacies prosecuted right along with a lot of innocent doctors?

I think I've been at this game for a little too long and if you can get away without pain, then you're very, very fortunate. For the rest of us....suffering is rather high on the list. And yes, I'll continue taking xanax. Why? Because it helps. I didn't ask for any of this....it happened and I'll use whatever gives relief of any sort. Why should my family have to put up with more than they do all b/c I "may fall" at some point in time? Well, I had 10 falls last year due to steroids....was anything written about them? Sorry folks, you shouldn't have to put up with this tirade. Yours, Lenora.
@lenora yes I've been there two years ago already with the intense nervous system activation.. and it's been a tough ride of trying different things that rarely worked. Xanax does.
I've tried Lyrica and it makes me more jittery. Not elavil yet.
Mirtazapine intense eating craves. And I also tend to get too hyper. Hm maybe it would work now. I try medication and usually have intense side effects hence it is very difficult.

My blood pressure is also on the lower side.

Mirtazapine is in a of class of its own. At 45 Mg it can be activating but at 7.5 to 15 mg it can be sedating.
 

judyinthesky

Senior Member
Messages
381
Okay guys here the unfortunate update
They did a spinal tap to test for neuro antibodies and it was absolutely horrible and I crashed so badly and I also now have the fluid leak with full on effects. I felt during the procedure like it sucked the life out of me, and I felt so nauseous and in a way that I haven't felt before.
That weakened me again so so much.

If you think it cannot get worse.
My body doesn't seem to like any interference from the outside!
 
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judyinthesky

Senior Member
Messages
381
I feel like it's not just a reaction anymore, but that I am moving to very severe without being able to do much.
My sleep got progressively worse. I have now new symptoms like burning on my whole body, extreme heat at night, burning in my spinal cord that keeps me awake at night, extremely reacting to any pain or stimulus, and the pain seems to be more kindling.

At my wits end where I should start with what. Also because of the medication sensitivity
 

PisForPerseverance

Senior Member
Messages
253
Okay guys here the unfortunate update
They did a spinal tap to test for neuro antibodies and it was absolutely horrible and I crashed so badly and I also now have the fluid leak with full on effects. I felt during the procedure like it sucked the life out of me, and I felt so nauseous and in a way that I haven't felt before.
That weakened me again so so much.

If you think it cannot get worse.
My body doesn't seem to like any interference from the outside!

God that sounds insane and awful. The exact kind of thing you fear might happen. Are they being responsive to what happened and helping you with it or trying to? Did they at least get the fluid?
 

PisForPerseverance

Senior Member
Messages
253
I feel like it's not just a reaction anymore, but that I am moving to very severe without being able to do much.
My sleep got progressively worse. I have now new symptoms like burning on my whole body, extreme heat at night, burning in my spinal cord that keeps me awake at night, extremely reacting to any pain or stimulus, and the pain seems to be more kindling.

At my wits end where I should start with what. Also because of the medication sensitivity
It sounds like they're going in a good direction with looking for anti neuronal antibodies in your spinal fluid. They're taking it seriously and doing serious tests (at least that one), that fact might give you comfort that you'll continue to be helped and have investigation and they won't give up on you. Do have that sense? That doctor you spoke about sounds like you should try to stick with her if you can.

What about nerve and skin biopsies for different kinds of neuropathy? And a nerve conduction study?
 

judyinthesky

Senior Member
Messages
381
It has to stop leaking. If this is what it is. For that you have to wait.
The problem seems that I'm not in a condition to do testing anymore. It is not so much the exhaustion, but the wiring of the nervous system leading to more burning and pain and central nervous system sensitivity.
I don't know what to do.

They are generally nice with extensive testing.
But can't do it anymore.
I think they didn't find antibodies.
 

PisForPerseverance

Senior Member
Messages
253
It has to stop leaking. If this is what it is. For that you have to wait.
The problem seems that I'm not in a condition to do testing anymore. It is not so much the exhaustion, but the wiring of the nervous system leading to more burning and pain and central nervous system sensitivity.
I don't know what to do.

They are generally nice with extensive testing.
But can't do it anymore.
I think they didn't find antibodies.

Ah :(. So no antibodies in your fluid? I'm just a lite confused about whether they were able to get any sample. Or do you mean none found in your blood? I don't know how they actually look for antibodies in the fluid. Do they just look for specific ones? I have a hard time not thinking your situation has some autoimmunity with what I've been learning about some of the symptoms you talk about, autoimmune conditions, post vaccine responses, but I only know what I know... I hope they don't give up on that aspect but that they also look for several other issues. I know you feel like you can't do invasive testing though. Let's hope they keep investigating in whatever way you can tolerate.

I don't know what to say except that I wish and pray there's a solution for you coming. It's so unfair, especially coming out of nowhere from a decision that you made for your health. I'm still worse myself. But I'm very sad thinking of you and this total downturn.

I really think a solution might come that'll be just what you need, at least for the first layer of reversing some of it. I wish they would just do ivig with you and see what happened. That's a risk too but... a low risk most of the time I believe. Which doesn't mean something bad won't happen. You could ask for it and say that even though you don't have a diagnosis, if the risk is fairly low and the benefit is potentially high, could they do it to save you on the suspicion it's autoimmune? If they can't even draw your fluid they can't know for sure if you have antibodies in your fluid or not. So next step is just treatment on the suspicion as long as the benefit is potentially higher than the risk. That would be my thinking.
 

judyinthesky

Senior Member
Messages
381
Now they are gaslighting me and say that the plus of fatigue cannot be because of the lumbar puncture, even though I have new symptoms now that I didn't have before.

I think I will wait it out until Monday, have one more talk and leave. I will leave hospital with more issues than before.