Hi! My husband has been having seizures for the past 20 plus years. They have never found out why he has them or has seen anything on the MRI's, CT's or any other testing they have done. Other than calicification on the brain. He is on Lamictal and Topomax for the seizures. He has been to so many neurologists and no one can help him and to be honest most of them don't even act that interested. The one he had been seeing for 2 1/2 years on his last visit announced that she didn't even know if he was having seizures, (after having him on anti seizure medicine for all these years.) I said well his seizures have been witnessed after surgery by other doctors, nurses and emt's have seen them along with people drawing blood at the lab. (I am not the only person that has seen them, many qualified people have too.

After that I took him to see an epiliptologist, we were very hopeful for this appt., because we felt if anyone, he could help us. For his first appt. the doctor came in late and was riflling though my husbands medical records as he was asking questions, and then didn't let us finish our answer, before going to another question, he spent a total of 10 minutes with us for a 1st time appt.

Needless to say, after 20 plus years, my husband is finally frustrated (which most people would have been much sooner). He has always been very cooperative about having whatever tests they want or seeing whatever doctor they want. He doesn't want to see anymore neurologists--he said he doesn't need too.
Does anyone out there know of a good neurologist in the Pittsburgh area, someone who is compassionate and knowledgeable?

The other neurologic conditions he has is severe migraines, with dizziness and ringing in his ears. It used to be he could lay down and when he woke the migraine was better, that is no longer the case, the migraines, ringing in the ears, and dizziness are much worse. Along with this he sometimes goes paralyzed on the right side. My husband is getting worse and I don't know what to do for him. He also has alot of other medical condition that are not neurologic related.

If anyone has any input at all I would really appreciate it, I hope I didn't ramble on too much.

Thank-you!

Hi Laura,
Welcome to the forum! I'm so sorry that your husband is having a hard time regarding his seizures. I've had epilepsy for 35 yrs. and just like your husband I saw many different neurologist and a lot of them just pushed the drugs on me which didn't help. I finally went to a University hospital that has an Epilepsy center there and the Drs. helped me the most.
If I may ask when your husband has a seizure do you know what kind of seizure he has? Absence (petit mal), where a person just stares, complex partial where he may stare, see colors in his eyes, smell odd odours, get a nervous feeling in his stomach (simple partial sz.) or maybe a tonic clonic sz. (grand mal).
Many times I've had migraines before and after seizures and I get dizzy once in awhile do to the seizure med I'm taking which can cause low blood pressure. My best advice to you is to call the Epilepsy Foundation in Pittsburg and they can help you out and give you info. Here's there phone number: 1-800-361-5885. Give them a call and give them all the info. and they will be able to tell you what might be going on. You mentioned that your husbands right side is paralyzed if I may ask does he possible have MS I have an aunt that has MS and gets migraines, and no longer can walk epilepsy can happen to some people that get MS. Here's wishing you and your husband the best of luck and May God Bless You Both!

Sue

Sue,
Thank you for the advice and responding. He started out having grand mal seizures, but a couple of years ago he was having physical therapy on his neck and was fully alert and able to speak put went paralzyzed on his entire right side, they thought he had a stroke, the doctors told us it was a different type of seizure. He also, sometimes, smells something burning prior too, but not always. Sometimes he also stares off for a few seconds, so he has several types of seizures. He was also told that he experiences something called Todds syndrome. He also has diabetes, sleep apnea, delayed gastric emptying, hypothyroidism, sinus problems, and others. So often it is hard to tell what symptoms are with what problem.

Thanks so much for the response, I really appreciate it.

Laura

Hi Laura,
I'm so sorry to hear that your husband has all these medical problems I do know that sleep apnea, stroke, and sometimes diabetes can cause sz. for some people. You might want to check out this website to get a lot of info. on these matters. http://www.emedicine.com/neuro/index.shtml#seizures
When your husband starts to smell odd odours that is known as a simple partial sz. (aura sz.) If he is just staring like a person daydreaming for a few seconds that's an absence (petit mal) sz.
I found that using nutra sweet (aspartame) can cause more electrcial activity in the brain which can trigger sz. for me. I found this out when I started to drink diet soda and then I had many sz. I spoke to my neuro and he told me it was the nutra sweet causing the problem and to stay away from all of the sugars like that. This also may be the reason why your husband is having migraines.
I do know that every time I get sick with a cold or virus of some type I end up having more sz. because it messes up my body chemistry and if I take a cold or sinus med it slows up the seizure meds through my blood stream.
Have your husband cut back on the carbs and protein foods and start eating foods high in fat this is known as the ketogenic diet and has been around since 1927. The diet helps stop or reduce sz. and it works great for people who have grand mal sz. Here's wishing you and your husband the best of luck and May God Bless You Both!

Sue

Laura you described my husband to a T. Do you still check
posts? Would like to know how things are going and to compare notes with you.

Karen,
Sorry it took so long to get back to you. My husband was in the hospital for a few days--not related to seizures, things have been hectic.
I am sorry to say that nothing has really changed as far as his seizures, migraines, ringing in ears, etc. In fact, he had a seizure yesterday that left him temporarily paralyzed on the one side of his body while sleeping yesterday and then he had another this morning in his sleep. Lately he also jerks involunatarily while awake and asleep. I want him to go back to his neurologist, but he is pretty fed up with them.
How are things with your husband?

Laura

Laura,
My husband has been having seizures for30+years. He has only had a couple eposides where he would feel paralyzed on one side. The first time he was in a grocery store.He felt the seizure coming on and laid on the floor...but then couldnt' move his right side. 911 was called and he was takin to the hospital about 15-20 min's away...and by the time he got there he was feeling ok. They checked his heart and sent him home thinking it was
seizure related. A week later he had a heart attack and we
were back to the hospital. Now over a year later...a couple weeks ago he had a seizure that left him paralyzed for a few minutes.Makes me wonder if it's head or heart related? He complaines of headaches now and says he
hears a humming noise in his ears. Like your husband he doesn't call his docs unless he has to. He gets so frustrated with them. He was having the involunatary jerking and grand mal seizures when he was asleep. Doc's put him on Keppra with his Dialitan which took them away.Since the Keppra he hasn't had any grand Mals..but still has the ones where he falls and can't respond for about 40seconds.
Somedays he will have several a day..then will go days without having one. It is very frustrating for the spouses also worring about them and not being able to help. My husband sounds much like yours...when you have had this for so many years, they feel they know as much if not more than there docs. lol.

I can ramble on forever!

Karen

Karen,
Anytime you would like to talk I am here for you. My husband had a bad seizure yesterday while asleep and today while asleep-and become paralyzed on the right. (I took an FMLA day from work today--to stay home and keep an eye on him. I hate having to go to work when he is so sick. Lately he has nightmares that seem to bring on the seizures.
I don't know anything about Keppra--does it work strictly for seizures or does it help with migraines, etc.?
Please take care, maybe we can help each other by comparing notes or just having someone to talk to.

Laura

[QUOTE=aunt_laura;485556]Karen,
Anytime you would like to talk I am here for you. My husband had a bad seizure yesterday while asleep and today while asleep-and become paralyzed on the right. (I took an FMLA day from work today--to stay home and keep an eye on him. I hate having to go to work when he is so sick. Lately he has nightmares that seem to bring on the seizures.
I don't know anything about Keppra--does it work strictly for seizures or does it help with migraines, etc.?
Please take care, maybe we can help each other by comparing notes or just having someone to talk to.

Laura,
Hope hubby is feeling better today and you can enjoy your day off. I know what you mean about having to go
to work when they are having a rough day. But I have to work for the Insurance.
My husband had seizures while sleeping for years. He would have the grand mall seizures.I hated those sleeping seizures.We would dread seeing the night time come. Those were the darkest hours. Since starting on the Keppra with his Dialantin he doesn't have the grand malls at night.
He still has small ones when first going to sleep sometimes. Yes Keppra is an anti-seizure drug. Since starting the Keppra he isn't having the involuntary jerks he was having in his arms/hands either. He is also on Zannax ...which is an anxiety drug. He takes this at night
before going to bed. It calms him down and helps him rest
better. If he gets jittery durning the day and feels like he
might have a seizure he takes one also. My husband has not worked for alittle over a year now. I think the less stress they have in their lives helps alot. Does your husband still work?

As for the headaches..this is all new for us. The heaches have just started in the last month or so. His head hurts
on the very top of his head. He says feels like he has a cap on...a painful cap!. He has complained of a headache this morning with a bit of sick stomach. I'm crossing my fingers that this isn't a start of a bad day for him. He has
not told the doctors about the headaches..so is only taking
over-the -counter drugs for them.

Hope you have a good day!
It's nice having someone to talk with that you know understands. So glad I found this site.
Karen