Sobbing seizures?

[Kw55]

Hubby was diagnosed with autoimmune encephalitis in January and has been on steroids and anti seizure meds since then. 3 weeks ago he started having episodes where he shakes and sobs uncontrollably as waves of pain go over his head. Has anyone else had symptoms like this?

[kitnkaboodle]

Hey there. Sorry to hear about your husband. It’s difficult to watch a loved one go through this.

I have a few conditions/symptoms that sound similar to this: dystonia, movement disorder, exaggerated startle response, chronic pain, intractable migraine, anxiety, convulsive fits (sobbing, writhing, uncontrollable movements, widespread pain). But my EEG did not indicate any epileptic episodes. Has he had an EEG? Are your husband’s episodes epileptic seizures, or non-epileptic fits (which can still be involuntary)?

Best,

Kit

[Kw55 in reply to kitnkaboodle]

Thanks so much for responding. It's just so hard to know what's "normal" for encephalitis. Hubby has had an EEG a few months ago but nothing was found on it. However we are waiting on results of more recent scans etc still and are seeing his neurologist next week. It's awful watching someone you love go through all this knowing theres nothing that you can do to help. X

[kitnkaboodle in reply to Kw55]

Yeah, that’s true. I’ve come to realize that pretty much anything goes for E. Doctors try their best, but they don’t understand the full effects of ABI for individuals. Every case is similar overall but differs in the details. I would say that what your husband is experiencing does sound similar to what I’ve experienced. Of course it’s not “normal” (nothing about E is normal), but perhaps it’s expected; our bodies and brains have been ravaged and severely traumatized.

Out of hospital, for the first 9 months of recovery, I saw every possible specialist and did every possible test, looking for answers. I didn’t get much beyond, “Well, you have an ABI. We don’t know for sure which parts of the brain have been damaged and how exactly that’s affecting you. Time will tell and hopefully heal.” Now, close to two years out, I’ve recovered in various ways, but I am overall very limited and suffer greatly. But it’s still relatively early for me in recovery, and there’s a lot for which to be thankful. Even if I don’t heal beyond this, my life is still worth living and is deeply meaningful.

I don’t know how recovery will go for your husband, but I do know he is very blessed to have you by his side. Being there (and staying) is doing something—it’s the best something. He will probably have lots of little and big ups and downs, with an overall trend of (subtle) improvement. Think about recovery in terms of months and years, not days or weeks. At some point, the next test or doctor won’t provide any new information, and it’s best to simply focus on coping, managing, resting, and appreciating.

I hope my comments help a bit. I’m happy to answer any specific questions, if any come to mind.

Take care,

Kit

[The_Bass in reply to kitnkaboodle]

Hi Kw55 - I’m so sorry to hear about your husband and I can only imagine how difficult it is for you at the moment. As kitnkaboodle says, encephalitis is different for everyone in terms of how it presents itself and what parts of the brain in effects. I did have the same problem at hospital for a day or so (I don’t remember but my wife has just told me) but it did subside.

What I can say is that it is early days and I believe things do get better - something that relates to all of us here in this group I think - it “just” takes a long time. I appreciate that’s not easy when there’s nothing you feel you can do. But being there for your husband is the massive thing you can do and are doing. My wife kept me going (and still does). I spent nearly four months in hospital but eventually came home and life has returned, working full time, raising my boys, relearning somethings, trying to stay positive. Wishing you all the very best and do let us know if you have any questions or have any updates.

[Kw55 in reply to The_Bass]

Hi. Thank you for replying. It helps him so much just to know that others out there understand what he is going through and that there is hope for the future. One of his biggest fears is that his symptoms will get worse and not better but it's so nice to hear that you have managed to get your life back after encephalitis.

😀

[kitnkaboodle in reply to Kw55]

We do understand, and there is a lot of hope! If it helps, I’ve never encountered someone with a history of E who didn’t get better in some or most ways eventually. Like The_Bass said, it takes a long time. Months and years.

[kitnkaboodle]

P.S. Just realized something — if your husband’s EEG is clean of epileptic waveforms, why has he been on anti-seizure medications? Did he have seizures early on but not at the time of EEG? If he’s still taking them, I wonder if those might be contributing to these episodes. Ask the neurologist.

I’ve had to be very careful with prescription drugs because my body is so imbalanced. The slightest change in my routine can cause severe issues and side effects, which can manifest in emotional volatility, dysregulation, and convulsive fits. Peace and quiet and a simple, boring routine have helped me more than most trialed meds, excepting my OAB med. That one is amazing 😂

[Remos]

Hi Kw55,

Sorry to hear your husband is going through this. I’ve suffered something a little similar in the past. My episodes consisted of a sudden shiver which would spread across my body and make me shake followed by a wave of intense sadness resulting in me crying. I didn’t experience any pain but I suspect the stress and anxiety may be part of the cause.

What helped me was lots of hugging and then lying down trying to relax. In my case I’ve put it down to extreme stress and anxiety and maybe an element of PTSD. I’m also struggling with stress/anxiety and fatigue at the moment. The way forward in my case is trying to stop brooding and dwelling on what has happened to me. Hard I know but we all have to try. Key is getting a routine together. Mine is now to meditate for 10-15 mins in the morning followed by a walk and then playing the piano (I’m trying to teach myself boogie woogie 😜). This may not suit your husband but I’m sure you get my point. My EEG was also normal and I also remain on meds for now. Plan is to wean off them in the next 5 months.

Not sure if this has helped or not.

Take care both. My thoughts are with you.

Remos

[Kw55 in reply to Remos]

Thank you for your reply Remos. That does sound exactly like what my husband is going through including the stress, anxiety and fatigue too. He is still just adjusting to life with encephalitis and maybe we also need to look for some routine for him in the future. It does help him so much just to know that he is not the only one suffering like this and we are both so grateful for people taking time to respond.

I wish you luck with learning the boogie woogie...that sounds like fun.

Karen

😀

[OldGnome]

Hello Kw55,

As another person who has dealt with encephalitis, I can tell you, it does indeed produce immediate changes, but not all of them will be permanent. Your husband is very early in his recovery, and in my case, after 2 years, things finally started to settle down.

I was also overemotional, had crying spells, and many other new and annoying/confusing things going on. But during year number 3, I was able to finally "take charge" of things that I was not able to, once again. (For example, I returned to my old job with VERY part-time hours, 2 years and 6 months after being in the hospital.)

I also went through a "roller-coaster adventure" regarding all of the differents meds the doctors had me take. Some of them might be beneficial, but for a temporary time only. Then they can be discontinued as the body and mind heal, and they are no longer needed. It's of crucial importance to stop taking any meds only when the doctors say it is OK to do so, and to keep them all aware of how he is feeling.

Your husband might have to learn to be patient with himself, as I have. (Although not all the time; I still push myself beyond limits every now and then!) It might take a relatively long time and the process goes s-l-o-w-l-y, but improvement is usually happening, without our realising it.

It's great to hear that you are standing by, and for, your husband as he fights this courageous battle! It sounds like your relationship will survive anything, especially after such a horrific event.

As I usually say, "Fight the good fight"!!!

OldGnome

One of my cats, "Tiger" has the right idea in this pic. He is relaxing and just "going with the flow"!! We all might need to do this, from time to time!

It's a cat's life!

[Gandalf2]

Enc symptoms are listed on a few sites, emotional highs and lows are to be expected. A few days ago I spent the afternoon/evening crying and sobbing with the burden of it all - felt better afterwards.He will likely also be dealing with PTSD or Complex PTSD - symptoms on the net.

You are entitled to a range of support services through your GP or social worker - try searching the net. I got a blue badge after a very tortuous application process and a bus pass which allows a companion..

It's a long and rough road but most people make a nearly full recovery after several years.

I'm still waiting for my sense of taste to return - coffee and tea taste the same to me. Best Wishes G2