Horrible Brain Symptoms, Declining Rapidly

crypt0cu1t

IG: @crypt0cu1t
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I'm at the end of my rope here, I have a diagnosis of Autoimmune Encephalitis, but I have YET to get any treatments for it and I've been relapsing for 6 months now.

I don't know what to do.. I am mainly housebound as leaving the house triggers severe anxiety/panic attacks/derealization. Watching tv causes headaches and dizziness and don't even get me started on trying to play video games... I can't handle anything even remotely stimulating..it's horrible.

I have horrible pressure in my head, blurred/dim vision, nystagmus, derealization, fatigue, Hypersomnia, dizziness, confusion, distorted vision and now I'm developing lack of emotion... I don't know what to do. The fact that this all started with smoking weed is driving me insane.
 
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xebex

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This sounds horrible! And awful that smoking weed triggers it! Sorry to hear that. :(

I can only approach this with my ME experience rather than experience of auto immune encephalitis but here goes.

My suggestions would be aggressive resting - ie rest in bed for a week with no reading or tv or any kind of stimulation, only get up to pee and eat.

I’d look into reducing glutamate levels In Your diet and maybe trying gaba enhancing supplements like theanine and possibly even Gaba but I’m not sure Gaba actually crosses the blood brain barrier.

look into NAC and/or RALA to help glutathione levels and detoxing

Cut out added sugar and make sure carbs are whole foods and not refined.

the pressure in your head could be histamine atleast that’s the easiest to figure out. Try an antihistamine daily for a week, seen if anything changes, you could then try the vit C quercetin stack.

Look into EFT it’s a type of acupressure that helps with stress and anxiety, if you can let go of the frustration of your condition it can reduce your stress levels and help you heal.
 
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I don't know what to do. The fact that this all started with smoking weed is driving me insane.
maybe thats just an example of- a coincidence.

I have a diagnosis of Autoimmune Encephalitis,
How did you get a diagnosis but now no treatment? (sorry this is probably explained elsewhere).

Look into EFT it’s a type of acupressure that helps with stress and anxiety, if you can let go of the frustration of your condition it can reduce your stress levels and help you heal.
great advice, and EFT (Emotional Freedom Technique) can be helpful in reducing some anxiety. Your anxious going out for real reasons- its a common reaction that happens stemming from Sickness Behavior, potentially.

Because your body knows its not in any kind of shape to be: going out there (where there are lions and tigers and bears).
 

Zebra

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Hey, @crypt0cu1t

First of all, I am sorry this is happening to you.

I'm wondering if a way to expedite treatment might be to show up at the ER of a hospital that you know has experience treating complex neurological conditions. (see suggestion below)

If your symptoms are severe enough, and a basic neuro exam shows abnormalities, you might get admitted and at least receive some temporary treatment while awaiting insurance approval for SCIG/IVIG.

Alternately, getting admitted at a hospital may just expedite the approval process. And, if it's a university-based hospital, they have an entire department devoted to insurance approvals, denials, etc. They can get sh*t done much faster than individual doctors in private practice, even over the weekend.

I think you are in Northern California, but I am not 100% sure. UCSF boasts of being one of the few hospitals to have Neuo-Hospitalists to look after in-patients and they also have a neuro-immunology out-patient team that could consult, if necessary. (I would NOT recommend Stanford.)

I know it's a huge pain-in-the-a$$ to go to the ER and explain your medical history, symptoms, etc., but you sound sick enough to get admitted, and I wonder if that would end up expediting your treatment.

Hang in there!
Z
 

Strawberry

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I agree with rufous about the weed being a coincidence, unless it was contaminated with pesticides. Chemicals don’t belong in our food, and definitely not something that is smoked. Definitely don’t mention that to doctors.

I do hope you get help soon, you don’t deserve this. Well, none of us do, but the younger generation deserve lives! I don’t understand why you can’t get treated for encephalitis…..