Sort of an emergency: brain inflammation crashes while sleeping

lenora

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Hi @judyinthesky.....It's possible that anxiety may be adding to all of your problems. Isn't there anyway that a proper dose of xanax or something else could be used? I also suffer from anxiety and can assure anyone that it makes everything much, much worse.

As far as the burning goes, have you tried ice packs? Ace Bandage makes good ones, that don't freeze hard, but are cold enough to control the burning that's possibly going on down your spinal cord. Put it right on the cord, cover with a sheet first and a light tea towel (you won't burn yourself from the ice) and give it no longer than 20 min. at a time. 20 on followed by 20 min. off. This should help control the burning pain. Ace comes in different sizes, are fabric covered and have been life savers for me over the years. It's OK to lay directly on them as long as they're covered. I find that ice can erase almost any pain, so good luck. Heat just doesn't work the same way for most people suffering from what you are.

Each state is different when it comes to meds, which makes everything rather confusing. If you have to be on something for anxiety, then it's necessary. I'll warn you that you may have to see a pain specialist, who may/may not want you to see a psychiatrist. So many people are addicts that it complicates matters for those who aren't. I just didn't want you to be surprised if this is the case. My pain specialist did not require me to see a psychiatrist, and my neurologist prescribes my xanax.

I hope this will help you. Today's Friday so it may already be too late to get meds for the weekend...but do get the Ace Bandages. Put in an emergency call to your neurologist. Don't take more than prescribed b/c it won't help your cause if you have to see a pain specialist. Good luck. Yours, Lenora.
 

judyinthesky

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@lenora I am already on Xanax and Clonazepam as needed. Also use Valerian tea.
I barely survive with them but due to medication hypersensitivity it's the only thing I can take.
Also already doing the packs.
I try to do breaks in between but I wouldn't be alive without those drugs.
I didn't have to increase dose, but I need them more than before the last two crashes.

My situation is so severe though that Xanax isn't so much of an issue for my doctors.

My PEM manifests as intense anxiety and nothing else.
It's not real anxiety, but like that:
I have a good okay time, say a good week, with not much anxiety and more energy. Then bam out of the blue I get an attack.
And I'm back to a crash with even more extreme sensory overload and anxiety.

This also happened after the vaccine.
I never have normal crashes. I have attacks that are full of panic, doom and sensory overload like really really strong. Then dive out of it after two weeks. Feeling better then, then something unexpected like a migraine happens and wham.
 

judyinthesky

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The anxiety is unrelated to my identity, but is my body giving me these signals.
I would fall asleep normally.
But then bam will get pins and needles, formification, skin burning, anxiety,... etc.
It's very strong so not the kind you can breathe through. I'm in this state sometimes for hours, and it is related to the brain nerves that I feel activated or inflamed at the base of my skull.
 

lenora

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Hello @judyinthesky.....Then I would talk to your doctor about being put on a daily dose of xanax, extended release. You may even need it in the a.m. and p.m. It's kind of strange that he wouldn't have done that from the beginning. A neurologist would probably make certain it was taken regularly.

And yes, some doctors (a lot actually) would have you believe it's something like heroin, and while you need it you should have it available to you. You may be sent off to see a psychiatrist who specializes in meds, but that's fine, it's commonly done today and in some states it's a necessity. Feel better. Yours, Lenora.
 

judyinthesky

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Hello @judyinthesky.....Then I would talk to your doctor about being put on a daily dose of xanax, extended release. You may even need it in the a.m. and p.m. It's kind of strange that he wouldn't have done that from the beginning. A neurologist would probably make certain it was taken regularly.

And yes, some doctors (a lot actually) would have you believe it's something like heroin, and while you need it you should have it available to you. You may be sent off to see a psychiatrist who specializes in meds, but that's fine, it's commonly done today and in some states it's a necessity. Feel better. Yours, Lenora.
Thank you
My doctor has given me Xanax to sleep so she is sort of supportive.
Have to do everything via my parents as I am very severe.
 

vision blue

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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.
You could also be alternating between states because of big fluctuations in norepinephrine levels.
 

lenora

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Yes, @vision blue.....a lot of different states overlap which can make everything confusing for both us, as patients and our doctors. There are really no definative answers, so it's a complex situation. We'll get there though! Yours, Lenora.
 
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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.
Hi Judy. I’m not able to read through the whole thread so forgive any redundancies! Your post made me think of a few things.

Noise sensitivity and social edginess: I had similar issues, become extremely agitated by most people. This derived from neurotransmitter issues.

Dopamine support (DLPA, tyrosine, mucuna) has helped my drive and energy, and granted an ease and even excitement of connecting with people. Serotonin support (tryptophan, 5HTP) helped my sociability, making me more comfortable around people.

I wore ear plugs for almost a decade and then stopped while experimenting with dopamine, serotonin, and acetylcholine.

I can’t remember anymore but thought my noise sensitivity went away with acetylcholine support. However your vivid images make me think of you having high acetylcholine. ACH supplements (huperzine, galantamine, Parasym Plus) easily induced lucid dreams in me. So you might explore serotonin and dopamine support first.

The following questionnaire can be super insightful. However try to answer super honestly, especially about things you might think are “normal” but aren’t! My serotonin and dopamine issues became so normalized I didn’t realize how bad they were, yet now after 3-6 months I feel like a new person. bravermantest.com

I also have tingling tongue and eyes. Eye tingling resolves proportional to higher folate intake. I haven’t gotten to the bottom of tongue tingling yet. Also have swollen tongue.

I just wrote another post about my experience with adrenal cortex for low cortisol and 3am insomnia — easy to fall asleep but unlikely to stay asleep. I used to call my symptoms “morning shatters” because I felt shattered; this derived from low dopamine in specific (taking supplements resolves it or at least makes me functional) and low cortisol in general. I don’t post a lot so it should be easy to find my post from my profile.

Other things that I’ve felt had a direct, physical, and tangible effect/improvement on the brain itself are: NAC (not so much acetyl-glutathione though), ornithine to combat ammonia (at least in my unique situation; other urea nutrients or yucca or ceylon cinnamon may help), vitamin E to combat PUFAs (very pronounced ‘smoothing’ of brain irritability, especially after taking fish oil and lipoic acid which must’ve oxidized and induced symptoms), and molybdenum for sulfur symptoms which were horrendous (eye pain, lethargy, cognitive impairment).

GABA-wise, I have good experience with theanine and valerian, and sometimes a GABA capsule which hits with a “Xanax effect” of almost losing breath in a good way.
 

judyinthesky

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Hi Judy. I’m not able to read through the whole thread so forgive any redundancies! Your post made me think of a few things.

Noise sensitivity and social edginess: I had similar issues, become extremely agitated by most people. This derived from neurotransmitter issues.

Dopamine support (DLPA, tyrosine, mucuna) has helped my drive and energy, and granted an ease and even excitement of connecting with people. Serotonin support (tryptophan, 5HTP) helped my sociability, making me more comfortable around people.

I wore ear plugs for almost a decade and then stopped while experimenting with dopamine, serotonin, and acetylcholine.

I can’t remember anymore but thought my noise sensitivity went away with acetylcholine support. However your vivid images make me think of you having high acetylcholine. ACH supplements (huperzine, galantamine, Parasym Plus) easily induced lucid dreams in me. So you might explore serotonin and dopamine support first.

The following questionnaire can be super insightful. However try to answer super honestly, especially about things you might think are “normal” but aren’t! My serotonin and dopamine issues became so normalized I didn’t realize how bad they were, yet now after 3-6 months I feel like a new person. bravermantest.com

I also have tingling tongue and eyes. Eye tingling resolves proportional to higher folate intake. I haven’t gotten to the bottom of tongue tingling yet. Also have swollen tongue.

I just wrote another post about my experience with adrenal cortex for low cortisol and 3am insomnia — easy to fall asleep but unlikely to stay asleep. I used to call my symptoms “morning shatters” because I felt shattered; this derived from low dopamine in specific (taking supplements resolves it or at least makes me functional) and low cortisol in general. I don’t post a lot so it should be easy to find my post from my profile.

Other things that I’ve felt had a direct, physical, and tangible effect/improvement on the brain itself are: NAC (not so much acetyl-glutathione though), ornithine to combat ammonia (at least in my unique situation; other urea nutrients or yucca or ceylon cinnamon may help), vitamin E to combat PUFAs (very pronounced ‘smoothing’ of brain irritability, especially after taking fish oil and lipoic acid which must’ve oxidized and induced symptoms), and molybdenum for sulfur symptoms which were horrendous (eye pain, lethargy, cognitive impairment).

GABA-wise, I have good experience with theanine and valerian, and sometimes a GABA capsule which hits with a “Xanax effect” of almost losing breath in a good way.
Thank you.
I've experimented with a lot of what you write. Anything pushing my serotonin seems a disaster.
I took GABA and no effects. For a really long time actually.
L-Tyrosine as the precursor to dopamine I take and at least can deal with it, however unsure about the effect.

I've thought about adrenal cortex and have it here, but am afraid about activation.
I'm even too hyper some days in a normal state.

I really think the spinal leak has a big role to play. I get sound hallucinations etc when my nervous system is up.

Do you find the adrenal cortex activating?
I need a benzo due to be able to eat because of extreme mast cell craziness.. so meanwhile I sleep okay. But that is on the benzo, but as my situation is so extreme there's no other option. I didn't need to increase the dosage though during the last months.

I have also pain in my spinal cord that is otherwise waking me up.
 
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Can you clarify what you mean by ‘activating’?

The spinal tap situation is far outside my personal experience. Sorry to hear about the pain. The most soothing therapy I’ve ever experienced is CranioSacral. Not sure if it’s compatible with that pain but it might be worth researching.
 

Crux

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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.
But then bam will get pins and needles, formification, skin burning, anxiety,... etc.
I've posted to you before about this, but just checking in to see if you contacted the Endo or Doc about the parathyroids. I recall that you had a thyroidectomy , and oftentimes the parathyroid glands can be damaged or removed during surgery.

Hypoparathyroidism can result , presenting with some of your symptoms.

https://parathyroiduk.org/hypoparathyroidism/symptoms-of-hypopara/

"Warning signs may be a drop in temperature, sensitivity to sound, shakiness, irritability, anxiety, diarrhea and gradually worsening muscle spasms.


Early symptoms of tetany may include:
  • Tingling or numbness in the hands and/or feet
  • Tingling or numbness in the face especially around the mouth
  • Irritability
  • Brain fog
  • Tiredness
  • Headache
  • Diarrhea
  • Twitching or trembly muscles
  • Sudden temperature drop "