Hi - New here - Really needing some ideas/feedback

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

pixielf

New
Messages
1
Reaction score
0
Points
0
Little history--- DH is 44 and in generally good physical health. He is a school teacher and used to coach for a long time (not doing that now). He was incredibly active & fit as a young boy/man and got his fair share of concussions unfortunately during his athletic career. Suffered a VERY bad concussion approx. 12-13 years ago as a coach riding to an away game on the game bus. Bus driver drove over a low concrete abutment and catapulted DH (sitting in the back seat) straight up like a jackinthebox. The air conditioner metal unit was directly over his head and he struck it cleanly right on top of his head severe enough it cut his head through his ballcap. Knocked him clean out.

He recovered from that uneventfully just told he had a bad concussion (Baylor @ Dallas)

Fast forward... no episodes, no issues, nothing. On January 9th of this year he was walking down the short flight of stairs to go to his classroom. This was after having a h@#$ of a weekend with a headache that we could NOT get to go away (he very RARELY has headaches). He went to school that morning even though he said he didn't feel good. Colleague took a look at him and about at the same time they said he didn't look good DH said the same thing... he had to sit down on the steps... they called for the nurse who came downstairs and they got DH to his classroom before the bell rang and the halls were filled with kids. DH says he remembers a little about being helped to his room and then he remembers nothing. Nurse, colleague and by now Vice Principal witnessed him lean/lay over his science table with a glazed look on his face.. eyes open but he was non responsive, he then started drooling and started jerking (upper body only) no loss of bowel or bladder. This lasted approx. 30 secs. Afterwards he was very much out of it but somewhat kinda responsive to them... they called me at home (we live 20 miles from the school) and before I could even get my shoes on the principal called me again and said he just had another one don't bother coming in ..we are calling an ambulance meet us at the hospital.

They had gotten him in a wheel chair up to the nurses office and had checked his BP and his blood sugar in case that was the problem (all normal) and they were trying to get him out of the wheelchair and onto the nurses bed/cot and he slumped against the wall and had a 2nd seizure much like the first. That is when they called the ambulance.

Got him to the ER... CT scan normal, labs normal, he is coherent but he has a headache and he feels out of it... ER dr. starts him on Keppra at only 125 mg. BID.

We have gotten him into a very good Neurologist that specializes in seizure disorders and they have run EEG (nothing found) ..just had a MRI with/without contrast done this past week.. waiting for the results although I'm fairly sure if there was something amiss they would of called by now.

What we are having a hard time dealing with is the headaches. He has not been without a headache since January 9th, despite any meds given to him (anti seizure and/or pain). We have tried everything. OTC, prescription meds... his head hurts... and at times it is very very bad.

The pain is centered in the middle of his forehead and during the peak it spreads across his forehead around towards and past his temples and it feels like the top of his head is coming off. No sinus infection (already checked) no allergies... he is also complaining of feeling "hollow" and almost like being buzzed drunk....

Neuro thought it might be the Keppra even though it was an incredibly low dose and he dc'ed that 2 weeks ago... but the headache will not go away... we don't go back to the Neuro for another week and a half....

I feel so badly for him... it is really affecting him severely... he is miserable....these headaches are occurring in the very same spot that the killer headache that precipitated the seizure originated from, right in the central part of his forehead....

He is not having any aura's and they dont' seem to be migraine in nature but we are perplexed... sorry for the novella... anyone have any ideas?

Thank you in advance...

Signed... a very worried wife.....
 
Hello Pixielf.

Welcome to the forums, although i'm sorry your HB is so unwell. It definitely sounds like epilepsy and it's not unusual for tests to still come back clear. I've had the worst headache i've ever experienced when my epilepsy first reappeared. They used to feel like my head was in a vice. I was in tears! I was prescribed Naproxen from the Neuro but that didn't work. I found I needed Panadeine forte or something with codeine in it. I also slept a lot, drank loads of water, avoided noise and tv. I couldn't read either. I don't know what to suggest but can you get in to see a GP sometime this week? You can also ask the pharmacist what he can take with the Keppra.

Best of luck and lets hope you get some help with it soon. x
 
Hi & Welcome Pixief,

Sorry to hear of your HB's dilemma. If he's suffered from a concussion in the past, then it is very possible he could start having seizures now. And sometimes seizures can cause headaches or the AED's can bring them on. I now suffer migraines and never had one until I started having seizures in my adult life.

If the headaches persist, make sure you call the neurologist. Epilepsy and migraines are related.
 
Welcome Pixief!

The MRI may reveal some tiny scarring or structural issue that is responsible for your husband's headache. Is he also having an MRA done? That would show if there are any vascular issues. Either way, I hope you get some answers.

If the pain persists, with no identifiable cause, ask his doctors about trying a botox injection (yes, it's used for migraine relief in addition to wrinkles) or a sphenopalatine nerve block.

Best,
Nakamova
 
Back
Top Bottom