Any neurologist should also consider your migraines when treating E. They would also be aware that not everyone returns a positive EEG result, even if they do have epilepsy. Just hang in there, and arm yourself with information and written notes.
What dose of topamax are you on? I'm on 100mg x2, for migraines. Until recently, it did a good job of controlling them.
I'm only on 100mg, my GP prescribed them, but the neurologist I last saw wants me to come off it and said I shouldn't take more than 100mg.
That's the problem with the neurologists I've seen, they are not aware of the fact that not everyone has a positive EEG result. I know they should be, but they are not.
Thanks.
Depakote ER is another AED used also for migraines.
I was on that as well as just recently on Topamax.
My neuro changed me to Topamax as while the Depakote ER made a significant difference in the reduction of my auras, it still didn't totally suppress them. Then he switched me to Topamax which gave me horrible side effects.
Now I am on Lamictal. I have remained on Keppra the whole time.
Neuro thinks I likely have a migraine variant which is why he was trying the dual use AEDs. He also has now not been so sure I have SPS/E and I was also feeling the same way, but lately I'm not so convinced, and I think I could have both, or at worse, probably E. I do have a history of occasional very bad headaches where I am sick as anything, sometimes with the nausea and vomiting until I take a 2 hour nap and jam an OTC NSAID at maximum dose down my throat or something. I used to get that once a year, or every other year, sandwiched by what I figured were general life tension headaches every so often too. I also get these tiny bright white sparklers in my visual field randomly-they don't hurt or bother me and are very brief. But then the aura smell in my face all day I believe has contributed to vague headaches, and when I mentioned that last year, that's where the whole possible migraine issue came on board. I would mostly though be more the migraine aura WITHOUT headache. I don't think Lamictal is aimed at migraine so much, but it's the one I'm on, and I know the dose isn't therapeutic yet anyway since I've only been on it a week, and I got two days in a row this week of my olfactory/gustatory aura. It's early yet for me, so I could be going for three. I woke up today with the smell gone, but it could kick off again. (that's how my aura works-once it kicks in, the after effect of the burn smell persists all day until I wake up the next morning, and then I might be okay for a while and have a new one a couple hours after I wake, or I will then go a good 2 weeks and be clear, but I always end up with at least 4 a month regardless of the two other AED add ons, and Keppra alone did nothing)
Thanks. Wasn't aware that other anti-seizure medications can also treat migraines.
I don't get it...who diagnosed you with epilepsy? I went to a neurologist and had an EEG and it showed constant seizures on both sides of the frontal lobes. Even if you are just seeing a family doctor, if you have the symptoms of epilepsy, one of the tests should show that...I did have a normal MRI and normal CAT scan, but abnormal EEG...but after the meds, the EEG was normal, showing the seizures were under control. Is that what happened? Did you get the EEG after being on meds?
I haven't been dianosed with epilepsy. The EEG was normal, so they cancelled the 5 day video telemetry EEG thing they were going to do.
My GP prescribed the meds as my neurologists didn't have the slightest interest in treating me, they actually put on my notes "We have not started him on any treatment plan as we do not feel it would be appropiate or neccessary."
I have had neurologists and other medical staff, including my own GP think I am making the seizures up simply because I have learning disabilities.
yes. ive never had an eeg while not on meds. believe me - i have epilepsy. i was diagnoed by my neurosurgeon at johns hopkins and ive had over 20 grand mal seizures. currently on 400 mg of topamax, 1500 mg of keppra and 600 mg of lamictal
You may be put on some other meds in addition to the topamax inorder to control the seizures. They may have to be switched around and different strengths of them.
It took awhile for my dr to get the meds and dosages for my seizures to slow down. I'm still having them but they aren't as bad or as frequent.
I'm taking topamax, keppra, lamictal and depacote (not sure of the strengths right now)
I get migranes after I have a seizure, my neuro gave me furaset for that. It doesn't really seem to help too much if the headache is really bad.
The neurologists refused to give me any anti-seizure meds (see above quote), it is only through hours of searching online during one bad night that I was able to eventually get the Topamax, but from my GP for migraines/headaches not for the seizures.
My migraines were completely eliminated by taking magnesium. I tried every med on the books, some with good results but after 30+ yrs I was tired of them, and decided to find alternatives. A very special doctor suggested I try magnesium, and it has been a life saver. The only time I have had a migraine in 6 yrs was when I was lax about taking the mineral.
DavidMC,
It's fairly common for EEGs to come back as normal, even though you are having seizures. That's because either you aren't having a seizure during the EEG, or the seizure is happening too deep in the brain for the electrodes to pick it up.
What's the question, exactly? Are you asking what the normal dose of Topamax should be? How to find a doctor?
Topamax may do double duty and stop your migraines as well as the seizures. Your neurologis may be a good one, and will treat both.
Hang in there.
Sorry, my question wasn't very clear. Just wanted to know how to get a better response from the neurologists.
I've had them talk loudly to me (I'm not deaf), patronise me, talk to whoever is with me and completely ignore me, not believe me when I tell them my symptoms and (see above) not be willing to treat the seizures simply because I have learning disabilities (honesty whoever goes with me notices it, they really treat me differently to other patients). I know this sort of thing was supposed to have been eradicated, but it has not, and is common in the UK, at least in Greater Manchester. In fact, there is a recent report out about discrimination being faced by patients with learning disabilities or other disabilities in the NHS and being denied treatment, will find it later. So I was just kind of wondering how to be more assertive and get them to actually do something.
But I phoned the hospital regarding a complaint I made the other day and got the person who was patronising and rude on the phone last time, she tried it again, but I was annoyed with her and sick of the treatment at this hospital, so although I was calm and polite, I was having none of it this time, she ended up apologising. So I think I kind of learned to be more assertive there and will use it at the next appointment.
And neccessary, I will make a complaint to the GMC, not going to take this from the hospital anymore.
Anyway, thanks for all the answers.
