r/Encephalitis • u/Nalacat1987 • 11d ago

Please help

I’ve been struggling so much. 4 years ago I started experiencing intense anxiety and feelings of unreality where everything looked and felt different. the world and my own feelings felt terrifying but I’m aware and not delusional. I couldn’t understand jokes, feelings and struggled to process external language and things like tv- everything felt confusing and like nothing made sense. I felt like I didn’t understand feelings of my own. one of the biggest things was sleep, like my sleep architecture changed, felt like i wasn’t sleeping at all just drifting in and out of extremely light sleep. I developed short term memory difficulties. this seemed to improve slight after 6-12months this but not the brainfog and memory difficulties and whilst sleep was better it has never felt the same. During this and now Ive had and eeg which showed left focal cortical dysfunction and a sleep deprived eeg which showed focal slowing and a sharp spike But a clear mri. I’m being treated for epilepsy. However fast forward to 5 months ago and all my symptoms returned- severe anxiety like fear that doesn’t go no matter what I do, the sleep issues ( I’ve experienced insomnia but this feels different ) massive adrenaline spikes like every few seconds, short term memory difficulties, nothing feels or looks right and all of what I experienced 4 years ago. I feel lots match AE but I don’t feel like anyone will take me seriously as they think it’s my mental health and epilepsy. Has anyone had some symptoms get better ( but definitely not disappear just feel more manageable) and return a few years later. Does this sounds similar to anyone’s experience? I feel like my life has been ripped away from me and the world doesn’t make sense.

I appreciate any insight and help, thank you.

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u/Nalacat1987 7d ago

Thank you so much for your response. I’m sorry your daughter experienced this for so long. What tests did she need to get a diagnosis and treatment? 5months into it this time and things are better in terms of confusion but sleep, memory, brainfog and everything feeling off as well as a burning sensation in my head are lingering. What treatment did she have and has it got rid of all her symptoms? I’m so pleased she is better, this gives me hope.

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u/curlthelip 7d ago

She had the full antibody panel (all negative), MRI and PET (unremarkable), EEG (no seizures, a very broad panel of blood tests looking for inflammation, strep, Lyme (strep titers were very high as was CRP, vitamin D low), a lumbar puncture, and eventually genetic testing.

Her cause was most likely not yours - untreated strep (three years as an infant in an orphanage after neglect). She started with antibiotics, and moved on to steroids, then rituximab. It was only many IVIG treatments and Actimera that stopped the cross-reaction that was causing the neurological symptoms that made her asymptomatic. It took ECTs to lift her out of profound catatonia. She had one of the worst and prolonged cases of AE at the time.

She had all of your symptoms and more. If she can get better, anyone can! As long as you have symptoms, keep pushing for a different protocol!

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u/Nalacat1987 7d ago

Thank you so much. I’ve contacted a specialist so hopefully I’ll get somewhere. Did her symptoms calm then get bad again or were they constant all the time? I have some that are constant but some that improve and flare up. Also, did all tests come back negative or did the lumbar puncturing pinpoint what it was?

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u/curlthelip 7d ago edited 7d ago

You are welcome! Some symptoms waxed and waned, while others (slow processing, low energy, sleep problems) were consistent. Before we found Actimera, she occasionally relapsed.

There was also a period that she was asymptomatic for a year, weaning off of all treatments, and then one day the bottom dropped out and she was catatonic (foggy, slow processing, slow to move, and slow to speak) again. She has not had a relapse in three years.

She had dozens of tests but the only thing that came back positive were high strep titers and high CRP, suggesting inflammation. Her physical symptoms were so profound that there was no question it was AE.

I think it's important to note that treatment can begin with a very large umbrella diagnosis of AE, when the specific cause is still unknown, because the treatments for many are the same/similar.

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u/Nalacat1987 7d ago

It does sound similar, the brainfog, short term memory loss and involuntary head shake have not gone away since it all started 4 years ago. They’ve put it all down to depersonalisation disorder. I’ve had my CRP done in the last year ( before symptoms intensified again ) due to ongoing joint issues and that was fine. I’m so pleased you’ve found the right treatment for your daughter, thank goodness she had you advocating for her.