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seancaden
@seancaden

Posts: 11
Joined: Jan 03, 2018

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

Posted by @seancaden, Wed, Jan 3 2:18pm

When I was 14 I was in a car accident. (its now 30 years later) I hit my head on the windshield and didn’t realize for years how serious the accident was. A year or so later i started having starring spells and feelings that I had no idea what they where. I just continued on with life thinking it would just go away. At 18 I had my first grand mal seizure (that I know of). I then started having them frequently. I went to a doctor and they tried several medications. Most of them made me feel worse then having a seizure. Finding the right medicine is key to living a productive life with epilepsy. At one point I was on 3 different meds and I felt like a zombie. Its definitely no way to live. I finally found some medicines that could control my seizures while i’m awake. My seizures are now confined to my sleep. I have 1 or 2 every month and the after effects get harder to deal with as I get older. I don’t feel the same for up to two weeks following a seizure.
Everyone keeps telling me to suck it up but as people with epilepsy know its easier said then done. Its hard to keep a job because i have to call in at least 2 or 3 times a month. Then I’m not myself. Its hard for people to understand. I even have my Dr. tell me that medication is probably the only option. I haven’t had any tests for quite awhile now and i’m not going to settle for a life like this just because nobody cares.

REPLY

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.

@seancaden

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.

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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.

@seancaden

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.

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@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.

Liked by seancaden

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.

@bonnieh218

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!

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Thank you very much for your response. I have had doctors try to get me on anxiety medicine for awhile but I don’t think it’s my problem. I’ve found that the more medicine I take, regardless what for, the worse I feel. The seizure pattern doesn’t change and that’s the core of all of my problems.

@jshdma

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.

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It is very discouraging and frustrating. I can’t say that I get angry though. It’s nobodies fault and I don’t expect miracles from anyone. I can never give up trying for a “normal” life though.

@bonnieh218

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!

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I believe that your seizure pattern not changing might be a good point when it comes to diagnostics. My seizures had no predictable pattern, that’s why I believe it took Mayo a few days for me because they need to be able to capture and record any seizure activity.
I don’t know where you are from but I will always continue to encourage anybody to visit Mayo.
I am from Minn. The University of MN also has an epilepsy center but they couldn’t help me at all. There are lots of good hospitals but they mostly seem to appear to be all about themselves and not the patient. (My personal opinion speaking from some experience).
After literally decades of no answers, I found my solution at Mayo. (and actually 3 solutions to 3 different maladies)
You have to understand they are not miracle workers and everybody is different even if they have the same illness, but as a team of doctors all working together they will keep digging and working for you.
I hope you find your answer soon.

Liked by seancaden

@seancaden

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.

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Often the best way is to get to the top. Cut through the fog and dust and find the very best authority on a given subject. I have found this to be true not just in medicine but in dealing with all kinds of problems. Of course, it may not be easy to find the best person, but it is easier to do the research (in libraries, on the phone, or on-line, etc.) than to do itby trying one after another that doesn’t solve or at least improve the problem.

Liked by seancaden

@bonnieh218

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!

Jump to this post

That’s why you can’t waste time with no-talent or little-knowledge practitioners.

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