What happens when you get flooded?

[kitnkaboodle]

When I am flooded (overstimulated), stressed, and fatigued, I can't control my body well. A dog barks, a bike passes, an engine revs, someone shouts, a bright light shines... and I freeze, fight, and flee all at once.

My limbs move involuntarily. I can't walk properly: I walk on my toes, feet pointed inward, arms bent up like a chicken and moving uncontrollably, face contorting and freezing. I am told it is alarming to watch. It is even more painful and embarrassing to experience.

This happens to me every day, many times a day. Whenever I walk out of my front door, I am bombarded with activity, noise, and lights. I brace myself for the next episode and make sure I have a plan to get home safely.

Have you experienced anything similar to a movement disorder, zombie walk, or hyper-startle response? What happens when you get flooded?

(P.S. If you haven't heard the term "flooding" as related to brain injury, here's some background information: braininjury-explanation.com... )

[Gandalf2]

Hi Kit, sorry to hear of your struggle, which sounds very severe, I don't know about 'flooded' but I get overloaded at home if there is too much mind work going on. My wife worries deeply that I'm about to have another seizure (8th) and end up in hospital again.But if I just sit or lie down for ten minutes I recover. Nothing approaching your phases and I'm always at home so no awkward situations out in the wide world.

It sounds awful and you're a better woman than me to deal with all that.

There may be a medication that tones down your sensitivity without dulling you. I don't know. I'm still in the position of being able to avoid overload. But when my wife drives me to the docs or hospital it gets pretty shifty when we get lost in a maze of streets and because of my 10 second memory I can no longer map read.

Happy Days - you have to laugh.

Best Wishes, God Bless and Happy Christmas.

G2

Baby donkey

[kitnkaboodle in reply to Gandalf2]

Thank you for the note, G2! I really appreciate it.

I’m sorry to hear about your seizures, and I can relate to getting overwhelmed when in cars. I try to take some of my medical appointments virtually, so I can avoid symptoms from travel.

At worst, my movement disorder sometimes turns into severe convulsive fits, wherein I writhe on the floor, unable to control or regulate my body. The EEG was negative for epileptic activity, although it kind of looks like I am having a grand mal seizure.

My best guess is that my brain stem and/or cerebellum were inflamed during the acute event. My scans are clear now, but there is obviously something wrong on a deeper level—major injury to the brain and nervous system.

All of my doctors have offered benzodiazepines, specifically clonazepam. I have a feeling I would trade one set of problems for another (worse!) set. As with all drugs offered to me, I don’t want to mask symptoms; pain is very informative. A headache or convulsive fit is my body’s only way of getting my attention and letting me know I’ve gone too far.

God bless & merry Christmas!

(And I did laugh at the baby donkey! It reminds me of Donkey from Shrek.)

[Gandalf2 in reply to kitnkaboodle]

Hi Kit, thank you for your reply which made me chuckle at the end. I feel I have got off lightly reading your accounts. I'd try the meds - they may help and give you a break. You can always ease off and take a break from them.I'm on oral morphine and paracetamol which I was told to take constantly to manage my pain. Then a pain specialist told me to take them at longer intervals, which seems to be working at the moment though I do have a holiday from pain now and again.

I did a 100 strokes on the rowing machine today which is a return to a regime I followed before falling ill two years ago now. Looking good for the future so far.

Here's me and my sister in my dad's car around about 1957

Best Wishes and a Cool Yule, G2

Proud possession in 1957 - I think its a 1933 Hillman Minx 4 door saloon

[kitnkaboodle in reply to Gandalf2]

Thanks for the input, and I am glad you have reprieve sometimes.

Wow, that’s incredible! It sounds like you were really active before falling ill. I used to hike, bike, ski, lift, etc. Now, I enjoy my daily walk and try to be grateful for the little things… a lovely sunset tonight, for example.

Precious photo! I don’t have grandparents, so I appreciate these little blasts from the past.

[OldGnome in reply to Gandalf2]

Now G2, is that possibly a Caterham 1?? Predecessor of the current 7 series?? I would drop a V8 in that car and add some old Cragar style wheels! It would drink a lot of petrol, but it would be worth it!!

G2's possible childhood wish.....

[Gandalf2 in reply to OldGnome]

It's a 1933 Hillman Minx as far as I can tell. A quality car with many refinements.

[OldGnome in reply to Gandalf2]

This is for sale right now! Only £3,100.00!! It is a good thing I don't live in the UK, I would be broke from buying all the cars you tell me about!! 😁

(I apologize to you, kitnkaboodle for intruding on your post with unrelated car messages!) ("Translating" apologize to "apologise" for UK folks!) There must be something in my new hazelnut coffee; I am in a silly mood today!

G2 possible purchase??

[Gandalf2 in reply to OldGnome]

They don't make them like that any more.

My rehab lady I may get back on the water eventually - my dinghy looks a bit like this.

[Ocean96]

Hi Kit,

Thank you for the information on the term flooding. I had never heard of it before but a really interesting and insightful description of it! I have called what you've described as 'getting overwhelmed' but flooding is a much better term so thank you!

All of the things you have said I can completely relate to! I get 'overwhelmed' as I say, when I push myself past my limits, do too much, and when life just gets a bit hectic and overwhelming. Like you, it affects me differently now I have a brain injury like headaches, fatigue, and being a bit clumsy.

It's completely normal and the encephalitis have put together some helpful fact sheets on the effects of encephalitis - encephalitis.info/Pages/Cat...

Also, in this video Hannah shares some tips with how she manages her encephalitis and recovery: youtu.be/3F3YJurnMVk(Not working as expected?)

[kitnkaboodle in reply to Ocean96]

Thank you! I’ve seen the video before, but I’d forgotten some bits, and it was a nice reminder.

I suppose movement disorders and the other things I have are just super rare effects of encephalitis!

[OldGnome]

Hello kitnkaboodle,

I didn't know if I should even post this, it is very silly and does not address questions/concerns as posts here usually do.

However, I am going to tell you a tale of dealing with strange looks I received recently. I was at a local supermarket and an item caught my attention. I looked at the printing on the bag, and immediately started laughing, since it is your namesake here on the Encephalitis Society site! Some people gave me strange looks and I hastily told them that the pic of the cat's tongue was funny, and was making me laugh. That made them even MORE uneasy! LOL!!!

So, another funny moment in time was had!! Hope all is going as well as it can for you and take my advice; don't laugh at items on shelves in grocery stores!! 😆

Oh boy!!

[kitnkaboodle in reply to OldGnome]

I’m glad you decided to post it; it made me laugh a lot! I know it’s a silly username, but I couldn’t think of anything better! Since I got sick, my nicknames from family have evolved to include countless variations of “kitten.” My siblings were the first to use the whole name of “kit and caboodle.” I’ve lost track of how many nicknames I have now—I can’t say E didn’t give anything in return!