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I'm frustrated with my fiances epilepsy

Sat, 12/09/2006 - 16:40
Ted and I met almost 2 years ago through a mutual friend. In 2005, Ted only had 3 seizures. This year, he went almost 5 months without one and then one every two months, then one in November and in December. I'm mostly frustrated with his doctor. Every time Ted has a seizure his doctor doubts he's taking his medications on time and at all. It gets on my nerves because I watch him take it and he treats us like we're lying to him. Also, he just keeps upping his topamax. Instead of trying something else, he keeps upping one medication. Currently, he is on Topamax and Lamictal, twice a day. He always take it. ALWAYS. I've been frustrated but today my frustration turned to worry. Ted's seizures used to last no longer than a minute and he spits and coughs the whole time and wakes up disoriented and with a headache, also they're always triggered by something like not enough sleep or stress of doing something intricate. But today, he wasn't doing anything. He fell down and stopped breathing. His seizure lasted closer to 5 minutes. It was horrifying. When he came out of the seizure his heart was beating out of his chest. Ted's seizures had never scared me before but today, when he quit breathing and turned purple, it did. I'm already frustrated with his doctor but after he upped Ted's topamax for like the 3rd time this year and his seizures increased and then became totally unpredictable, now I'm furious. I need help explaining to an obnoxious doctor that more medicine is causing more seizures without him trying to blame Ted not taking his medicine or having a beer...he'll fine something to blame it on besides the medication. None of Ted's behavior has changed, only his medicine has. I don't know what I'm going to do without choking his doctor. He recommended we go to a medical center and get a sleep study, which we're doing but I feel like his doctor isn't making an effort and just blaming Ted's behavior. Any advice?

Comments

Re: I'm frustrated with my fiances epilepsy

Submitted by SaraOwens on Sun, 2006-12-10 - 16:03
The doc is probably eliminating any reasons for the reaction. Now that Ted had such an extreme seizure, after his meds were increased, then the doc may take a different route. The sleep study will help to identify what kind of epilepsy he has, in turn allowing the doc to prescribe something better for him. I have read that some people take many different meds before finding the one or two that suits them best. I went thru 3 before finding mine, and even now I question it sometimes. Before you get mad at a doctor, learn more about the illness you are facing, whether or not it is yours. This way you'll be able to quell your fears and come to a better understanding of what you're facing. Google seizures, or related words you're worried about. It will be alright in the end, with Epilepsy it just takes time to adjust to the different way of living and percieving life. Good luck to you, and try to keep you feelings in check. Getting angry won't solve anything. Talking about you anger will. This site helps alot!!!

Re: I'm frustrated with my fiances epilepsy

Submitted by INACLASSBYMYLONESOME on Sun, 2006-12-10 - 20:37
Number one, do you all live in a small town, where their aren't many specialists around??? Otherwise, why not just seek a second opinion, third fourth if necessary. I had a really good neurologist but he is very hard to get an appt with so I had to seek a new neurologist int he process my neuroglogist who referred me to a epileptologist who I love!!! As much as you are frustarted with your fiance's doctor, imagien what he's going thru, he's the one having the seizures.All I can advise is that you ask your fiance if he would be up to seeking out another opinion, it couldn't hurt. I wish you all the best, and I pray that your fiance is able to find a treatment that will subside his seziures

Re: Re: I'm frustrated with my fiances epilepsy

Submitted by mulleca on Mon, 2006-12-11 - 22:29
It took me 16 years and a few neurologists to get on the right track. Don't be afraid to ask for a second opinion or to be referred out to a different neurologist. It is Ted's health on the line. As far as meds go, it can take several combos, or tries of different ones before you get the one that seems to work. It can be very frustrating. I will say a prayer for you and for Ted. I hope you will do the same. Mulleca. Merry Christmas.

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