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.