My AE experience over 4 years.

[Superlefty]

Hi everyone.

Very glad to find this forum. Hope I can give people useful support in the future and share experiences. Heres my story:

One morning in March 2017 I woke up to what I now know was a partial seizure - I couldn't stop my left arm from thrashing around for about 5-10 seconds after waking up. Thought it was odd but assumed I was still half asleep and thought nothing more of it. Until that evening when I had my first full seizure on a football pitch.

Long story short, I spent almost a month in hospital over a 6 week (ish) period. I had about 5-6 seizures, confusion/psychosis (thought I had 2 mums, one with a crossbow!..I thought everything was a conspiracy and was being kept in a theatre! not my own recollections!)..I was ultimately diagnosed with anti gaba (b) encephalitis. Lumbar result picked this up, I think the MRI /ECG etc showed nothing. Didnt have particularly high markers in CSF either but treated with steriods anyway which I immediately responded to. I was released as an outpatient quite quickly I guess and have spent the last 4 years taking mycophenolate and tegretol because of the seizures I had. I have no recollection of my time in hospital or about 3 months prior either, along with some minor gaps in longer term memories. But I think I was treated swiftly and effectively in the acute stage. My 1 year MRI follow up was 'normal'

The past 4 years have been a struggle though, I must admit. I have my own business so I was back in work quickly (2 weeks after being released from hospital). The first year I think I was in autopilot but I'm grateful to be able to say that my cognitive function was/is fine. But as time has gone by I've just wrestled with a lack of initiation, enthusiasm, energy and motivation, probably coupled with some depression too I guess and some anxiety (maybe concern of it happening again because no-one can tell me why it happened in the first place). The problem with these symptoms is they can all be just caused by a busy, stressful life. People without AE suffer from these things too. So I've never known whether I've been very lucky and had no brain injury to deal with, or if I have an ABI causing this.

My neurologist says there is a low chance of recurrence, especially 4 years on with nothing to report. Everything that I've read seems to back this up too and I'm now reducing medication starting with the immune suppressant. This is something I'm a bit nervous about!

I joined the International AE Facebook group last year, but there seemed to be a heck of a lot of people suffering ongoing symptoms or relapses - more people than the stats I've read would point to. So I really don't know if my experience are similar to anyone else's here? After the acute phase, I've virtually got on with life, carried on working and really just had to deal with the emotional aftermath.

Would very much welcome feedback and thoughts on how my experience compares.

Cheers,

Superlefty.

[Archer6]

Hi Superlefty! Thank you for sharing your story. I'm looking forward to reaching my 4 yr mark too so I can worry less about relapses.

I was in the hospital for 2 months and just passed my 2 yr mark from being released. I had anti-GFAP AE which had only recently been discovered, I also have retained my cognitive function but it seems that it just keeps telling me how screwed up my life is! I lost a lot of memory and don't remember much of the past 5 years. Apparently over that time I got laid off, fired, got another job, promptly fired again, had to sell my house to pay medical bills and wake up every day wondering WTF?!?!

I have memory issues every day but am slowly improving. Depression is a big problem for me. My neurologist referred me to a doctor who who prescribed Celexa. I remember he said "low mood is common after this kind of ordeal". Yes! someone recognizes that I am going through an ordeal! And I'm not done with it yet! It seems like my family although supportive, expect this to be like a broken leg or something... six weeks and you're back on your feet. It's not like that. The Celexa is not a cure-all and I still have a low mood but perhaps not quite as low as before. I think it helps and may help you. too.

I've been fortunate to not have any more seizures or major ongoing symptoms beyond memory and the emotional side effects. However, maybe some of my memory issues are expected for my age. I have been using some brain apps on my iPad that can compare my scores to others in my age group. Its good to see that my scores have improved over time and I am near equal to or sometimes surpass the average for my age! My neurologist told me that for a while I "could not create memories" so maybe some of those long term memory holes will remain holes.

Thank you for giving me more hope that I too can successfully reach the 4 year milestone.

Best wishes to you.

-Archer6

[Superlefty in reply to Archer6]

Thanks for the reply. Theres definitely hope my friend. I 'think' I've/ we've actually been very lucky in many ways, having heard and read about what AE can do, at its worse.

Interesting to hear you take meds for the emotional side. Its one thing I've not done and after 4 years of self help type stuff, I've recently wondered if my brain just doesn't produce enough of the happy hormones anymore due to injury and it just needs medical assistance to do that.

I guess I'm intrigued to know if the 'low recurrence' rate is indeed that in the real world, and not just a stat from a clinical study.

Thanks again - stay well!

[so_rogers]

Hi Superlefty,

Thank you for sharing your story.

I fell ill in 2017 (September) so recovery time is similar to yours. I also had auto immune encephalitis but mine was Anti NMDAR. I was in hospital for 11 weeks of which I remember nothing.

What you’ve said really resonates with me. After the acute phase, I fortunately had a very good recovery, my cognitive function was in tact and I got back to work fairly quickly. Any residual physical /neurological issues I had were minor and I was able to resume my ‘before’ life.

However, even now, I feel my motivation, energy and emotions have been affected and I feel anxiety more keenly. As you say though, it’s hard to know if that’s just life or the effects of an ABI! Sometimes I think I judge myself too harshly about it all, I went through a lot and it’s not surprising that what happened would linger throughout my life in some way.

Fear and anxiety of relapse has lessened for me over time but certain things can still trigger it for me. I am lucky in the sense that my encephalitis had a cause (a cyst) which was removed. I can see how not knowing the cause would add an extra layer of worry!

Having an illness that affects the brain is such a strange and some times contradictory ride!

I hope the reduction of medication goes well, I know I felt much better as mine was stepped down.

Take care,

Steph

[Superlefty in reply to so_rogers]

Thanks a lot for your message. Yeah its a real challenge to try to work out if its just life or an actual injury isn't it. You'd know if you had a torn muscle in your leg after an accident but no-one can see your brain and so its much more mysterious!!!

All the best and thanks for again

[wherearemypillows]

Hi there and thanks for sharing your story! I'm glad to hear that things were caught and treated early for you, and that you are doing relatively well. As for me, I had an atypical seronegative case that predominantly manifested as cognitive decline, and took 5 years to get diagnosed. I responded remarkably to standard AE treatments however I relapsed again - in hindsight, we think it was because I was kept on immunosuppressants for only about 6 months. Thankfully with retreatment I have gotten back on to a good road to recovery, and have found a doc with true expertise with this illness who is managing my maintenance therapy regimen! She says that she keeps her patients on at least 2 years of immunosuppression, unlike my original docs.

As far as the IAES Facebook group, I suspect ongoing issues and relapses are overrepresented - many people with good recoveries don't tend to stick around to engage in the conversation, and I don't blame them! It can be quite a nasty experience you don't want to relive through someone else's words. Another thing is most of the base seems to be from the US, and I wonder if maybe there are regional differences there vs. the UK in terms of say, the average amount of time docs will keep their patients on medications. You may find a different group such as "Survivors Plus (Encephalitis survivors and caregivers)" resonates a bit more with you.

Like your neuro said, I do tend to see that the further out people are from their acute attack without a resurgence of issues, the less and less likely it is that they relapse. Hoping the AE remains far in your past and that the emotional recovery continues - cheers!

[Superlefty]

Thanks a lot for the feedback and sharing your story too. 5 years is a long time to be suffering for, so you have my sympathies for that. Whilst I'm sure I had cognitive decline and confusion during my hospital stay, the seizures were a clear giveaway for the neuros I guess. So I got to a diagnosis pretty quickly. I'm sorry your experience lasted so much longer. That must have been a really tough period.

I cannot fault my treatment during the acute phase at all. As an outpatient, I'm not so sure the emotional fallout is quite so well catered for. They are great at making sure there's no signs of physical symptoms but I felt a bit alone getting my head around it all. Theres lots of reading you can do, but pointing me in the direction of it was about where it ended, at least that's how it felt. - for instance, I read about biographical disruption and when I did, it really resonated. But I'm not sure that was shared proactively with me as I recall. Its been a journey I've felt like I've taken on my own in some ways. That said, they saved me from serious cognitive impairment with quick treatment, so I'll always be incredibly grateful.

I think you've confirmed my thoughts; that people who are still suffering will use a support group more. And understandably so. I've read a few stats about relapse rates initially being 12-30% approx and drop the further out from the acute phase you go without relapse (as you say). But the stories of relapse didn't represent that percentage of posts.

All the best and thanks again for sharing. It was helpful to read.