CCM Friends.... Seizures

My doc has told me to watch for seizures with this very vague description of what they can be besides what we lay people consider a seizure… Any one suffer from seizures that aren’t what we expect seizures to look like? How were you diagnosed, tested, treated?..

I did not realize things were abnormal until I started on Keppra after my one grand mal seizure. I had tons of deja vu moments where I swore I had just lived that moment. I think it was like my mind took a snapshot and then replayed it. I had them every couple of days and have not had any for two months now.

Weird leg twitches, getting up and my body shaking (just thought it was from getting up too fast), my big toe going completely numb.

This is what I have NOT experienced since being on meds. I have no idea if this is what the doctor is talking about but what has changed for me.


Exactly… He said “anything odd!” Helllllo!! It’s all been ODD since my bleed in June SMILE!! My bicep “twitches” I yawn like a mad man sometimes… I space completely out and then after, my brain feels “tired” and I am sure there are many more “odd” things but so hard to put into words! Did you get tested or just started meds and felt better?? And I guess the grand mal kinda took testing off the table… Huh? Thank goodness for edit!!

This is what I experienced.When I first had the AVM and they did a craniotomy my dr pulled me aside and she told my mom that I would have the risk of seizures. I was released without seizure medication. And then I had a seizure! I was sitting down, and I felt this tingly feeling I called to my mom but I wouldn't talk, then I blacked out. It happened so fast. I woke up on the ground and very confused and dazed. Luckily she was there and shr called my dr and put me on keppra. It varies from person to person. The tingly feeling is a warning sign, but then again it happened so fast.

I was sleeping when I had my grand mal seizure so I don’t remember anything. No testing other than my MRI which revealed my avm which I didnt know I had.

My brain testing did show abnormal waves but again this was when I was in the hospital.

Those probably are small seizures. The keppra isn’t bad for me. Just makes me tired in the evening. Worth it to be able to drive in another 4 months.

Hi Misti,
Do you know where your CCM is located?
Not meaning to scare you (just in time for the weekend!) :( depending on location, excessive yawning can be symptomatic of a CCM, so especially if this is a new symptom, let your neuro know.
I've had a 'handful' of generalized/grand-mal seizures secondary to bleeds, & a few during post-op of surgery. Also, years ago I used to have lengthy moments of feeling 'spacey' & just off & not feeling right. My neuro back then considered them to be auras Fortunately, the auras never went into a full-blown seizure, but they were scary.
Take care.

Thanks all!! I will say to anyone reading any of this… AVM and CCM belong to whoever it is that has it. Seems like not one story is the same!! but it so helpful to hear others stories and I appreciate all replies so very much!! I am thinking of journaling stuff but I can’t remember it all HA.

For me, with my AVM in the reading/ speaking area, my "aura" would show itself when I realized I could not read. Being a teacher, that would happen while I was at the board and I would have to go to the teachers room and either relax my way out of it or have the seizure. You will know if you had one,,, you may have a headache and feel stiff all over. Usually there was a little memory loss of the days events until hours after.

I hope you find that you never have one but after my body rejected all the regular drugs I have found that Depakote (for migraines) is a drug I can live with.
Wishing you the best

PS If you could have someone teach you "birthing breathing" it really helps! I know that sounds funny but it can help if you learn how to relax by focusing on breathing slowly... that usually helps me stop my aura.

Yes! When I have my “I feel funny” moments… I have been relaxing, walking away, and breathing! So maybe I have been helping myself out all alone. SMILE!!! Thank you for sharing! If seems I may wanna find out the exact location of my “old bleed” and CCM, huh? so I can better understand what may or may not be anything!

I agree with the breathing control as a tool, although "birthing" is a bit out of my wheelhouse!

Oh, my aura is one of two things, seeing a dog or the smell of a dentist's office.