Seizure control: I can't seem to get any help

Hello @seancaden,

I'm so glad you found Connect; his must be so concerning for you.
I'm tagging Mentor @dawn_giacabazi to get started. We would really like to get to know you better; would you be able to share a few more details? May I ask what medications have helped you control the seizures while you are awake? Are you following up with a neurologist?

Hello @seancaden & Thank you for tagging me @kanaazpereira

Wow I will just say déjà vu! Reading your story gave me chills and took me back to 1999!! That’s when I had my accident and when my marriage to siezures and my journey began! So true, can be frustrating to find people who understand or that won’t look at you indifferent or looks of pitty!!

I am so please that you have found good day time control! Half the battle, now to fine tune those nights. Curious if you’ve had a sleep study?

Thanks
Dawn

It's so nice to hear from people who understand. I've tried a lot of medicine over the past 25 years or so. Dilantin, Tegretol, Topamax, Trileptal, Carbatrol and Lamictal. I take Carbatrol and Lamictal right now. The funny thing is I can take 1200 mg or 500 mg and still have the same pattern of 1 or 2 seizures a month in my sleep. I use to call my neurologist after a seizure but all they ever did was increase my medication. That just made me feel worse.
I have gone to the same Neurologist for a while now after seeing multiple doctors. I have scheduled an appointment with a different doctor. I figure another opinion can't hurt. I've just been through all of the testing multiple times and they always say "we're not sure why you have seizures. The scar on the right side of your brain is a possibility".
It just gets frustrating.

Hi seancaden,ive had grand mals,oops tonic clonic,since i was 5 .now 63.Gone through all kinds of meds ,tegretol,phenobabital ,dilantin,etc.One works for awhile then time for adifferent one.Why is it that all these meds work for awhile then seem to weaken.And the side effects are terrible,teeth,bruising ,gums,etc..Im on keppra and vimpat.Why is it that the meds for epilepsy does so much damage to our bodies.bye the waay i also have ostioperosis,drug induced dilantin main drug.Ive taken a lot of dif meds in my lifetime for grand mals and havent found one that clean of side effects. After so many years you woud think the quality would be better.Hey at least after 58 years of grand mals still around.

@robertjr, I'm sorry that you've had to deal with so many seizures but i'm happy you're hanging in there. You talked about the side effects of the medicine and that is one of the worst parts of the whole situation for me. I'm not in too bad of shape right now. I was able to convince my Dr. that I didn't need as much medicine. Its not a daily struggle that it used to be from the side effects of the meds but the 1 or 2 seizures a month is very hard to bounce back from. The fatigue, headaches, sore muscles and usually a sore tongue are a few of the effects I have. My confidence goes way down too. It's hard to be a salesman with low confidence. Feeling this way 2 weeks a month is no fun. I feel terrible for my family that has to deal with my mood swings.

@seancaden Curious if you’ve ever thought about going through the the Mayo Clinic Epilepsy Clinic??

That is ultimately where I ended up to finally find the right diagnosis and the right medication to treat them. I take 1950mg of Trileptal a day. No terriblecside effects and no seizures. I too had tried over 10 different medications and years of testing before I went to Mayo Clinic. Here’s a link to review.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
Wish you the best
Dawn

It probably is not so much that "nobody cares." More likely is that nobody KNOWS. Many medical conditions basically cannot be solved-- no real treatment, and definitively, no cure. Of course this situation is extremely discouraging. It is probably difficult to keep from getting angry.

Some people do not care, but most DO CARE but do not know. Not all doctors have time, or want to, learn new things. With people living longer doctors are faced with things they never learned in medical school. I have had only one seizure - so I have been told - but I do not remember it, I was in a coma in the hospital. I still take meds for it. Try to find a doctor you can trust that will listen to you and honor your opinions. It may take time, so do not give up. Keep notes, so you do not have trouble recalling things while talking with the doctor. It's almost as if when I walk into the doctors office my mind is wiped clean of everything I wanted to talk about. I find notes help me. Good luck.
mlmcg

I think you have found the right place here. I spent many years with doctors not knowing what was going on, labeling my symptoms as anxiety. A friend suggested Mayo to me. Through their testing and observation in the epilepsy clinic, it took ten days to solve my puzzle. I had temporal lobe surgery in 1983. Solved my problem.
I too tried many meds. I had some side effects but my problem with meds was mostly allergies. I am on Keppra now with luckily no side effects.
I hope you can give Mayo some serious consideration and plan appointment time with them. THEY CARE!

It's amazing to talk to others that have experienced my situation. I haven't come across many people in my lifetime that understand epilepsy. My existing doctor has been good at throwing medicine at it for many years now. I don't expect him to snap his fingers and fix everything but I feel like the effort isn't there. He might feel like since he's been dealing with me for so long, there is just nothing else he can do. I understand that but I've heard of so many positive stories that I'm not going to settle for a life like this. I want to try my best to get better so I can be there for my son.