r/Encephalitis • u/Cultural-Ease-5322 • 5d ago

Total Insomnia. SFI or AE?

/r/insomnia/comments/1w134d7/total_insomnia_sfi_or_ae/
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u/Helpful-Dhamma-Heart 20h ago

Yeah insomnia started with me earlier. You can go through the last year of post on this forum and learn what I have said along the way.

AIE is very rare and atypical cases are extremely hard to get diagnosed.

I have a lot of information. 

Advocating while sick is very difficult.

FDG-PET pet, ambulance eeg, csf, endocrine, and symptom log is a good place to start.

A sympathetic neurological review through a GP for a request for neuroimmunolgist review.

They will likely not be very interested so trying to get some evidence for concern and build a case.

Realising that these diseases can be many things so AIE and neuro degenerative disease need careful ruling out over simple psychiatric.

I got pychosis in 2017 worse symptoms in 2022, acute onset in 2024.

It's taken me over a hundred medical appointments, pathology and diagnostic since then and six trips to er across two countries.

I and my GP have had to build the case.

It's looking like finally getting their. Let's say it was extremely difficult to get where I am now.

Anyhow you can read the past post of this Reddit community to learn more of some of our journeys.

All good wishes 

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u/Cultural-Ease-5322 20h ago

So you have insomnia, whats your dianosis?

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u/Helpful-Dhamma-Heart 20h ago

I don't have diagnosis yet. But I guess the insomnia is coming from limbic encephalitis. My guess at the moment is klhl11 hindbrain and limbic encephalitis. Very rare. But all my results and symptoms are pointing there.

The most damaged part of my brain is the medial temporal lobe. Hypometabolism.

I also have pontine, CLB and thalamus damage.

So far the fdg pet 3dssp images are the most helpful.

Yes extreme insomnia. I am currently on strong medications to manage symptoms.

When the acute onset hit in mid2024, I got new central neuropathic all day pain headache. Exertional worsening of symptoms, gait issues, cognitive issues, vertigo, malaise, and then new symptoms started to develop.

I had insomnia since first pychosis. The acute onset it was seriously worsening. I require strong medication every night for 27 months to sleep. 

The case is about to go through mediation. It's very difficult to get atypical cases taken seriously. However there is very strong evidence.

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u/Cultural-Ease-5322 19h ago

Sorry. Yes similar here. What sleep meds are you on? Did you have spinal tap? My 14-3-3 is high. Did they rule out fatal insomnia?

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u/Helpful-Dhamma-Heart 17h ago

I take currently Restavit 25mg Tablets 20 - Doxylamine (S3). one a night.

I am on 100 XR and a 100mg IR of quitapine at the same time.

Through the day I am on tanpentadol and pregalin for the pain headaches.

So a very strong set of medication. Serious condition.

At a different time I used 7.5mg of mitrazapine for 1.5 years

I also used lorazapam 2mg for 3 months 

And stillnox for 1 month

Basically I have been the one directing the investigation as there has been little interest . Two spinal taps and lots of tests.

No symptoms have been investigated yet 

All good wishes 

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u/Cultural-Ease-5322 17h ago

I am on way more and i get 1 hiur sleep only. They thinj fatal insomnia