Hi everyone,I was diagnosed with Seronegative Autoimune Encephalitis in April 2020. Fatigue has been a major issue for me and my Neurologist suggested trying the Parkinndons drug, Amantadine to see if it help. Has anyone experience of this?
Many thanks,
Gràinne
Hi Gramch,
I had Viral E in Nov 2020. I am prescribed 100mg Amantadine 3x a day. to help with my balance issues. I was originally at 2x a day . It has helped me a lot. I don't know if it helps with fatigue. If you have balance problems this may help. I didn't experience any side effects. Hope this helps. All the best.
Thank you so much for taking the time to reply. I am so sensitive to medication so I don't want to risk feeling worse than I already do. I'm also a pharmacist so that nay be a good or bad thing.! Not working at mo due to fatigue.
Hi Patch, Don't know if you saw my comment on this thread that Gramch posted regarding my husband. Could you explain a bit more about your success with Amandadine in helping with balance? How long did it take until you noticed the Amantadine was helping? Were you/are you on anti-seizure medications as well?
Thank you for your insight!
Hi cg511cg, Sorry I didn't see your reply until today. I had some really bad problems with my balance during my recovery . I basically had to relearn how to walk again. That being said, I still have bad balance days, even on the amantadine. I still use a cane in unfamiliar surroundings (even though I hate the cane). I fell more than a couple of times pretty badly. Never was on any anti-seizure meds. I felt better balance a couple of days after taking it. My neurologist upped me to 3x a day when I felt like it wasn't working as well about a year later with no side effects.
As a side note, your husband is still very early in recovery, I'm close to being 3 years since being diagnosed. Stamina will come back, keep him walking with lots of encouragement. Sleep is important to recovery too. Rest when necessary. His body will tell him when he has done too much. Don't be afraid to get a second opinion either. No one knows everything about this hideous brain injury.
Hope this helps, All the best.
Hi Gramch. I was intrigued to learn of the drug Amantadine that you mention might actually help with fatigue. Then reading that patch2234 was prescribed the same medication for balance. My husband got Encephalitis H1 this past May (2023). After hospital and rehab, he came home July 30. Since then, he has gotten stronger, but still gets really tried very easily and uses a cane to walk because of balance issues. I read about this drug at: medlineplus.gov/druginfo/me...
As always, there are scary risk factors and you have to weigh the potential good outcome against those. The doctors have not mentioned this drug at all in terms of helping my husband with his with fatigue and balance issues, so I appreciate your sharing this information. My husband is on 3 different anti-seizure medications, so possibly it would not be a good interaction.
Hoping for the best possible outcome for you.
Thankyou for your lovely reply. Sounds like amantadine could be an option for your husband. Definitely worth discussing with your Doctor. You've probably heard this so many times at this stage but your husband is very early in his recovery and given more time I hope he makes a full recovery.
Hi there,This is the lovely things about these forums, we just get it!I'm 3 1/2 yrs on from AIE and even though I have improved massively my life will never be the same again. It is frustrating because I haven't done anything to deserve this but at the same time why not me? We just have to continue day to day and make the most of it. There's always someone worse off.
Nice talking to you liovely people.
Goodluck and good health ☘️
Hi Gramch – I certainly used to think “what have I done to deserve this?” in the early days post-encephalitis but, it’s exactly as you say, why not me … it’s ‘one of those things’ and it definitely doesn’t help to stew on that thought. This said, none of us recommend encephalitis to anyone and I’m yet to yet to hear of anyone that’s found it easy to ‘get over’ – we all need help along the way, coming to terms with the things we can’t do or find difficult doing now and helping us to focus on the things we’ve relearned, against the odds, or even things we now appreciate more than ever.
Hello The_Bass!
I am just writing to thank you for sparking my memory by accident. As you know, it's been a tough battle and I am trying to get my former cooking skills back. You used the word, "stew" and I immediately thought that I hadn't made a good beef stew in many years! I believe I will write that on my dry-erase board and see what I can come up with now! Served with some crispy/crusty Italian bread with a generous slathering of genuine Irish butter would be great, along with the stew!!
It sounds like you are doing really well with your recovery and I hope it continues!!
Thanks again and if things go well, I will have to "send you" some e-stew in the form of a pic!! 🍲
OldGnome
Wishing you a very positive and ongoing recovery , it will make you a far stronger person 😎
Hello Gramch,
I got the "Big E" in 2018 and the main problem is devastating fatigue. I have not tried Amantadine, nor was it suggested by the Neurology folks at my hospital. They suggested that I try taking Modafinil, and one other med, but I forgot what it was. I wrote a post called "My Modafinil Experience" if you want to take a peek at it. The Modafinil DID keep me awake, but I was a sort of zombie the whole time. Instead of using meds to try to force me to stay awake, I have had to learn to live with, and manage the fatigue as best as I can.
I am not saying that you should not try the Amantadine; it might actually be of benefit to you! Actually, I might discuss this option with my doctors, too. At this point I've got nothing to lose and everything to gain! 😆
All the best to you in your search for finding something helpful!!
OldGnome
Hi OldGnome,
Thankyou for your reply. It was really informative. My fear taking a med was that I would feel worse than I already do. Wyb I tried amantadine for one day! I got severe anxiety and couldn't breath and decided I'm not putting myself thru this. I'm going to read your blog on Modafinil. When you have a neurological condition your so much more nervous trying something that has no evidence and probably won't work or has side effect and potentially will make you feel worse, slbeit in a different way than you already do.. if that makes sense!
I had E October 2020 and couldn't t sleep at all and very clumsy. I was put on amatripolene for nerve pain/ headaches and then I developed migraines that resemble strokes I.e. everything goes except hearing so total collapse.blind etc and they put me on candasartan and if they start 900mg of aspirin. I now sleep about 6 hours and have more good days than bad with fatigue.I m a headteacher of a Special School and have got back to work. E just leaves everyone with a myriad of issues but the silver lining it reminds you every day to live life and let loved ones know you love them.In my dark days this forum is literally a life line.Thank you all.x
Thank you for this very positive post , your words gives anyone reading , that little bit of inspiration which is massive having had this horrible illness
kind regards to you Sleepless68
My son also experiencied a lot of fatigue. To this moment doctors have not give him any meds. Half of the day he sleeps. I’m glad to hear is a med for that.
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