Sort of an emergency: brain inflammation crashes while sleeping

judyinthesky

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Hey
Maybe some of you read that I have been doing super poorly after Covid vaccine and a spinal tap which lead to cerebrospinal fluid leak.

My symptoms seem to add up nicely in my brain.
My issue is that I am getting more and more severe. Wearing noise cancelling all the time can't stand anyone in my room anymore. Can't talk anymore.

I crash constantly with waves of sensitivity going through my nervous system just by thinking also. And after everything.

The issue is I can hardly get better, as I tend to have the problem. I go to sleep and get sleepy, but then, in particular when I get more tired, my brain gets inflamed (I feel also some cranial nerve symptoms, like a tingling on tongue - which could be extreme anxiety, but it also started with the leak). It almost seems like a reflex: happening when I am going relaxed, sometimes.

I feel this night effect is rather mechanical.
Every time my skin burns as well, I tend to have trouble breathing, extreme agitation, extreme sound sensitivity, and every time that I have had such an episode my ME gets worse. I feel like a downward spiral.
I also have extreme pictures behind my eyes, almost psychotic. Weird mix of everything in my life.

I think what would be helpful is anything that could help this brain inflammation at issue.

Please note that my parents care for me.
I wish I had gone and gotten a blood patch before I went hypersevere.

My theory is that both an ME brain inflammation and the leak work somehow on the same area. They somehow add up - stress from the nerves being pulled and maybe the ones inflamed.

Before the spinal tap, I had a little bit of heat at night but not much. The heat at night now is almost unbearable, as is the skin burning, and gets better throughout the day.

I am medication hypersensitive but respond a little to Xanax.

Let me know your thoughts.
 
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Learner1

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Very sorry to hear of your situation. :hug:

Are you saying it got worse after the CSF leak and the blood patch and not any better?

I know a woman who had very severe neurological symptoms and they thought her breast cancer, which she'd recovered from, had metastesized to her brain.

She ended up going to visit her patents in Minnesota, where it turned out they had more powerful imaging than at Seattle Cancer Care Alliance, where they found several more leaks that hadn't been previously identified. They were patched and she recovered, with PT has this problem had affected her ability to walk.

As for the vaccine, there have been numerous reports that it reactivated herpes zoster (shingles). I had it reactivate HHV6, which had been treated 3 years ago, and now I'm back on the antiviral, Valcyte.

it might be wise to look around for what infections might have reactivated, using PCR tests, not just antibody titers.

You might also look into autoimmune antibodies which cause neurological symptoms.

As for your pain, have you tried things affecting GABA?

@Hoosierfans Do you have any thoughts?

Best wishes.
 

judyinthesky

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Have tried and excluded those things. Not going on the antivirals. I've heard they are difficult to stay on.
Natural gaba I've tried.

In my ME years that never made a difference.
Antibodies have been excluded in the hospital.

I've read a lot about patching and I think I first have to get into a condition to be able to do it.

I've detoritated from vaccine, lumbar puncture, medication trials that wire me, but what is making me progress is the panic nights with brain inflammation and terror.
 

judyinthesky

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As for the vaccine, there have been numerous reports that it reactivated herpes zoster (shingles). I had it reactivate HHV6, which had been treated 3 years ago, and now I'm back on the antiviral, Valcyte.

it might be wise to look around for what infections might have reactivated, using PCR tests, not just antibody titers.
As for the infections. One doctor found active herpes, which I just related to my, ahem, herpes aka fever blisters. Who knows though.
May I ask you how medication sensitive you are and how you feel about the antivirals?
 

Hoosierfans

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Let me think on this. I too have the all over skin burning.

My first thought is that the patch has to be done — unless and until that it done I think it’s going to be hard to get things into balance.

@Hip had a great post on neuroinflammation which gave lots of options to try.

Of course, watch what you are eating. Sometimes a keto or Paleo diet can help with neuroinflammation.

Last suggestion is for the burning — the one thing that has helped me is CBD “arthritis” lotions that have menthol in them. I put them on my arms and legs and it helps with the burning for a few hours. Unfortunately it doesn’t do much for the brain burning / pressure.
 

bensmith

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In a very, very similar situation. I also got mine from covid itself, maybe something there. I am very sorryzc when the body can’t rest we are in a hard place. Or get sick from rest rather.

and i def have mechanical issues too, but not sure what is what. def all contributes i think, like you say.

maybe ivermectin? Since “covid” related.
 
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Starsister

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Im so sorry for what you are going through💕and have no great advice. But I also have the skin burning from head to toe.. pretty sure from Small Fiber Neuropathy and I use ice or Cryoderm roll on which cools long enough for me to sleep.. twice as much menthol than Biofreeze. For burning head I have frozen gel packs cap. Sending you prayers🙏🏼
 

Learner1

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As for the infections. One doctor found active herpes, which I just related to my, ahem, herpes aka fever blisters. Who knows though.
May I ask you how medication sensitive you are and how you feel about the antivirals?
That might not only cause direct symptoms, but cause mitochondrial fragmentation and trigger neurological autoimmune antibodies.

You might look into the Mayo panels on the attached list of antibodies collected from patients here. @Hoosierfans ?

And treat your virus(es)...

I've taken Valtrex, which my insurance didnt want to pay for. They did pay for Valcyte which has been helpful. I found that sensitivity to medications can be reduced by:
  • Looking at the ingredient list and ensuring I'm not allergic to anything in it, which surprisingly most FDA approved drugs have one or more of my allergens so I have to have them compounded
  • Looking at what nutrients get depleted by whatever medication, and supplementing so that I'm not short
 

judyinthesky

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That might not only cause direct symptoms, but cause mitochondrial fragmentation and trigger neurological autoimmune antibodies.

You might look into the Mayo panels on the attached list of antibodies collected from patients here. @Hoosierfans ?

And treat your virus(es)...

I've taken Valtrex, which my insurance didnt want to pay for. They did pay for Valcyte which has been helpful. I found that sensitivity to medications can be reduced by:
  • Looking at the ingredient list and ensuring I'm not allergic to anything in it, which surprisingly most FDA approved drugs have one or more of my allergens so I have to have them compounded
  • Looking at what nutrients get depleted by whatever medication, and supplementing so that I'm not short
So what were your side effects from the antiviral treatment personally, if you care to share?
 

bensmith

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I’m taking famvir and haven’t noticed any difference good or bad. Not saying do ‘t take it but we seem somewhat similar
So thoght i’d mention.
 

Wanja

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Hey
Maybe some of you read that I have been doing super poorly after Covid vaccine and a spinal tap which lead to cerebrospinal fluid leak.

My symptoms seem to add up nicely in my brain.
My issue is that I am getting more and more severe. Wearing noise cancelling all the time can't stand anyone in my room anymore. Can't talk anymore.

I crash constantly with waves of sensitivity going through my nervous system just by thinking also. And after everything.

The issue is I can hardly get better, as I tend to have the problem. I go to sleep and get sleepy, but then, in particular when I get more tired, my brain gets inflamed (I feel also some cranial nerve symptoms, like a tingling on tongue - which could be extreme anxiety, but it also started with the leak). It almost seems like a reflex: happening when I am going relaxed, sometimes.

I feel this night effect is rather mechanical.
Every time my skin burns as well, I tend to have trouble breathing, extreme agitation, extreme sound sensitivity, and every time that I have had such an episode my ME gets worse. I feel like a downward spiral.
I also have extreme pictures behind my eyes, almost psychotic. Weird mix of everything in my life.

I think what would be helpful is anything that could help this brain inflammation at issue.

Please note that my parents care for me.
I wish I had gone and gotten a blood patch before I went hypersevere.

My theory is that both an ME brain inflammation and the leak work somehow on the same area. They somehow add up - stress from the nerves being pulled and maybe the ones inflamed.

Before the spinal tap, I had a little bit of heat at night but not much. The heat at night now is almost unbearable, as is the skin burning, and gets better throughout the day.

I am medication hypersensitive but respond a little to Xanax.

Let me know your thoughts.
I think my inflammation gets a lot worse while sleeping as well.
Did you find something that helped you?

i wake up at night with extreme tingling all over my body and not able to think and being paralyzed.
Also my Arms and Legs get numb.
 

judyinthesky

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Sometimes i think its due infection. An infection that is somewhat reoccuring and afzer a while it settles down again.. But i am not sure
To me it's because my body is confused between a cerebrospinal fluid leak and ME. Which overlaps. I think.

I have to report that I still oscillate between those states.
 

judyinthesky

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how can you get this fluid leak diagnosed? i just had MRI etc
I have to get into a state to get into hospital
Too severe atm
I had a lumbar puncture so it's clear due to symptoms that I'm leaking even though doctors would possibly dismiss that if not seeing things on MRI
However iatrogenic leaks are often not seen on MRI

What about you?
 

Wanja

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Location
Berlin, Germany
I have to get into a state to get into hospital
Too severe atm
I had a lumbar puncture so it's clear due to symptoms that I'm leaking even though doctors would possibly dismiss that if not seeing things on MRI
However iatrogenic leaks are often not seen on MRI

What about you?
i try to get checked if the burning in my head is caused by viral infection. Dont really know that much about the tests yet and what to do against it
 

judyinthesky

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I have it now only every other night and when I get neuro attacks so that is cool.
It seems to tell us though that something is activated/inflamed, but not all the time
It's a little horror show when it happens, and often is also related to my spine then, where I also feel neuro pain between my shoulders often, but that seems to be related to the spinal fluid leak also.
Leaks and CFS really aren't such a great fit :(