New - Husband with epilepsy but Dr.'s don't seem to get it

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!

MercyMade

New
Messages
1
Reaction score
0
Points
0
Hello,

My husband started having absent seizures back in the summer of 2015. He also had a major mental breakdown and was diagnosed bipolar. So, the Dr.'s thought his memory loss was due to bipolar disorder. Skip ahead to May of 2016 and he had a grand mal seizure one day when we were camping. The ER gave him Codine for the headache he had from it and he had a EEG. While that was happening he slipped into a coma. They believe he had seritonin syndrome due to the Codine and multiple over meds he was on for bipolar. He ended up having another grand mal seizure a month later. It was a rough couple of years with multiple test and no real diagnosis. A neurologist told us it was epilepsy. He was good all winter and then in the summer of 2017, he woke up completely disoriented and in a lot of pain. Went to the ER and his CK levels were off the charts. I believe he has frontal lobe seizures, but the hospital neurologist said it was due to his past bipolar. So... his regular neurologist pushed us back to a physchiatrist. We are so disheartened as I know this isn't due to the bipolar. He was most of the winter, but started having memory lapses and waking up disoriented again in the last 4 months. Yesterday afternoon, he had another grand mal seizure while we were walking our two boys. We actually met with the phych yesterday before the seizure and he said the symptoms we were describing sounds post-seizure related and to follow up with a neurologist! I just don't know what to do! No doctors can seem to figure it out. I've scheduled a new neurology appt. for next week and an appt. with his general doctor. Any helpful tips. I'm keeping a log, but his symptoms seem so odd. Some days he almost appears as though he is drugged, but I know he isn't using anything. Help.
 
Hey MercyMade, welcome to CWE!

I recommend that you see an epileptologist (a neurologist specializing in epilepsy), ideally one at a hospital center that also specializes in epilepsy. An epilepsy specialist should have the experience to make the proper diagnosis, based on the symptoms you describe. It might also be helpful for your husband to undergo additional EEG testing, either sleep-deprived one or an overnight study.
 
I would recommend a visit to a neuropsychiatrist as well to follow up. It couldn't hurt to get another opinion. This doesn't sound like bipolar to me.

Bipolar is mood swings, not seizures.
 
Hi MercyMade,

I am wondering if maybe your husband is having "season seizures" This happens when a person has more seizures at certain times of the yr. I have fewer seizures in the spring and summer compared to the fall and winter and that's because there's more serotonin in the spring and summer and less in the fall and winter. If you see a pattern where your husband is having more seizures at certain times of the yr. it's very possible that it's seasonal seizures. My best advice to you is to have your husband see an Epileptologist these Drs. specialize in epilepsy and can do detailed testing as to what is causing the seizures, keep a person on the least amount of meds and you also will deal with a neuropsychiatrist who can also tell what's going on in the brain and causing the bi polar, seizures and other problems. I wish you and your husband only the best of luck and May God Bless You Both!

Sue
 
Hello & welcome. If your husband has had so many grand mals, it's surprising that the doctor didn't say he has epilepsy. He definitely should have more tests done.
 
Back
Top Bottom