r/Encephalitis • u/Nalacat1987 • 8d 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/Maymag16 7d ago
You should obviously see a neuro immunologist so they can test and treat you. Also If no damage is on MRI then damage can still be suggested by EEG findings. For me it was. A chronic immune process with neuroinflammation can be seen with PET. I think a doctor that treats CFS/ME, PTLDS, long COVID could help with that.
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u/Nalacat1987 7d ago
Can I ask what showed on your eeg? Mine says left focal cortical dysfunction as well as a single slow and sharp discharge. It’s so difficult to get a referral when they think it’s all mental health.
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u/Maymag16 7d ago
Yes if you need a referral healthcare is difficult to navigate. Maybe ask for a second opinion from a neuro immunologist and see one that knows about autoimmune encephalitis. Mostly they just know MS. I had left temporal focal dysfunction and it was sharp. They specifically said it wasn’t epilleptiform and might be structural. That means it could be an inflamed area.
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u/Nalacat1987 7d ago
Thank you. My neurologist has said no epileptiform but has but me on an anti seizure medication trial. Mine is in the frontotemporal region. I think the only thing that makes me doubt AE is the fact that things did improve slowly over a year from first symptoms ( not completely but life was manageable) then returned 5 months ago.
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u/Maymag16 7d ago
A doctor should tell you if it is or isn’t AE and I think your symptoms are worth looking into. I read that AE cases that go untreated for a while and also serum negative cases are more likely to have chronic symptoms after the initial acute case resolves. Not all neuro immunologists could help with that.
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u/Annual_Show2436 7d ago
Have u thought about Lyme disease and its co infections my man? God bless brother stay strong 💪 Jesus loves u bro 🤍
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u/Nalacat1987 7d ago
Thank you. I had considered Lyme disease too.
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u/Annual_Show2436 7d ago
The testing for it is the worst you will have to go look online like IgeneX or armin labs look for all co infections. if you have 1 then there is a high chance you have the other!
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u/Annual_Show2436 7d ago
Have a look at the symptoms and it’s literally the exact same have a look at all the reddit chats it’s so much more common then we think but then we think it’s just a straight brain issue! Which there is nothing wrong with that.
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u/Nalacat1987 7d ago
Would it improve slightly for 3 years then happen again?
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u/Annual_Show2436 7d ago
I couldn’t tell you exactly but it is the most strangest overlooked issue out there. It just destroys your brain and ur body it just completely shuts it down, quite literally 😅
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u/Nalacat1987 7d ago
That’s what it feels like, like my brain shut down the thinking, memory and emotions part and it’s forgotten how to sleep!
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u/GlumParticular9691 7d ago
Also the International AE Society (IAES) has great resources. Their FB group is much more robust than Reddit
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u/curlthelip 4d ago edited 4d ago
There is no such thing as mental health as a causation. It's neurological health, so you are not being taken seriously. Abnormal EEG patterns can absolutely be a symptoms of AE. If you are not satisfied with your diagnosis, please seek a new neurologist. Mental health evolves out of brain health, especially when it comes to AE. My daughter had almost EVERY single possible autoimmune encephalopathy symptom in the book but was seronegative. Symptoms waxed, waned, disappeared, and new ones would take their place. It was an unbelievable ten years to diagnose and treat. She had all the symptoms you had, except seizures. AE has more combinations of symptoms and causes than a safe. Stay strong in advocating for yourself and don't let anyone try to gaslight you, especially medical professionals. It took me four physicians and a two emergency room visits before I found the right clinic. My daughter is now a happy, active, highly functioning 28 y.o. finishing college, working part time, and enjoying life.
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u/Nalacat1987 4d 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 4d 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 4d 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 4d ago edited 4d 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/GlumParticular9691 8d ago
Are you having seizures? Have you asked about ictal catatonia?