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leslieannmarin

Help again- migranes vs. epilepsy?

Hi, I posted in late November recounting my experience and having been recently diagnosed then "undiagnosed" then diagnosed again.  briefly, i began having these very quick and sudden episodes of fluttering eyes, slurred speech and tongue biting.  i went to see a group of neurologists. an mri was done which was normal.  a sleep deprived eeg which was also normal (according to one of the drs but spikes and waves of activity according to the other dr.) so i was clinically diagnosed with possible simple partial seizures and put on carbatrol.  i could barely tolerate it and after 2 weeks returned to the neuro (who opined that the waves and spikes were drowsiness) who was told me that my eeg was normal and that i should go off the medication and wait and see.  i went back to the original neuro who diagnosed me and he stressed that i should go back on the meds and not take the chance of a possible grand mal.  i have now been on carbatrol for almost 2 months. i have had a few breakthrough seizures and continue with intermittent slurred speech and tongue biting.  i took some advice from various posters on this site and went to the cleveland clinic yesterday (which specializes in seizure disorders and epilepsy) for a second opinion.  After hearing my symptoms, the diagnosis, undiagnosis and then diagnosis again, this epitilelogist(sp?) said that he is not comfortable with my diagnosis of seizure disorder not so much because of what i am telling him but because of what i am not telling him (i guess i do not have some of the tell-tale symptoms) and i am having a 24 hour eeg starting today.  he is leaving me on the meds, however, suspects that what i am suffering from is severe migranes.  i am so confused... can anyone help - any ideas? suggestions? questions i might ask?  i am not a doctor nor have any experience in this other than what i have gone through for the past 3 months and therefore am very concerned that 3 doctors have all said 3 different things.....i appreciate any imput.

Comments

RE: Help again- migranes vs. epilepsy?

FWIWI have had cluster migraines for years and never experienced any of the symptoms you have described . What I experience with migraines is excruciating pain, nausea, vomiting, light/sound sensitivity,occasional auras etc...pretty typical migraine symptoms from what I have been told.  I take pain meds and hole up in a dark room for a day to 3 (sometimes longer) and wait for it to pass usually since I have allergic reations to the standard therauputic migraine meds they use.Of all the dotors you have though i would listen to the epileptologist. Epilepsy is their specialty and from what i understand they KNOW what they are talking about.  Since so many peopel experience different symtpoms re epilesy , then I would think it is just as possible to have different symptoms from the norm with migraines.regards,Zoo

RE: Help again- migranes vs. epilepsy?

Hi there. I'm relatively new to this website but thought I'd offer my experience. I've had 3 day migraines every month since the onset of puberty... 43 years ago. The headaches have been very hormonally related and predictable. After recently becoming menopausal I looked forward to no more migraines. Alas, no such luck. I still get them, but now I never know when. I started having complex-partial seizures about four years ago. After six months of having my family tell me something weird was going on I went to the Dr. who called them "spells" and referred me to a neurologist. The neurologist (who was a migraine specialist) said it was probably nothing serious and likely related to menopause. After 6 months the "spells" became more frequent and began to be more of a concern. I have no warning when I'm going to have a seizure, no awareness during the time of the seizure and no memory of it afterward. During the seizure I do repetitive things, space out and say and do inappropriate things, like pulling at my clothes. They last about 3 minutes, then I feel very tired and confused for quite a while. The only way I know for sure I've had one, is if someone tells me about it. I went back to the family Dr. with a description of one of the "spells" written by my daughter. After reading it, the Dr. referred me to a new neurologist  and sent me for a CT scan and EEG. Both came back clear, however the neurologist asked me to go for another two tests, a sleep deprived EEG and a dye-injected CT scan. Each of these tests clearly showed abnormalities: seizures in the temporal lobe and an unrelated abnormal mass in the cerebellum (that's a whole other story). I've been on 5 different seizure medications in the last two years and am still not managed. Next week I will start a new one. My difficulty relates to yours, but it's even more complicated because I can add in menopause. The Drs really can't tell what is causing what. Am I forgetful because of seizure activity, medication, or is it just a natural function of aging and menopause? (I'm 55). Am I having seizures because of the migraines, or am I having migraines because of the seizures? I often have a headache along with a seizure, but not always. I discussed my frstration with this with another Dr. who is a personal friend and what he said has been helpful. He told me they that the Drs. don't really know a whole lot about this because epilepsy presents in so many different ways. They can guess and make scientific connections but they don't really know. If you have a brain you can have epilepsy. Epilepsy is so personal. How it affects you and how the medicine is going to work is a bit of a crap shoot. Try to be patient and keep yourself safe. Ask lots of questions, write them down before you go, and if you don't get answers ask them to check again or see someone else. I was raised believing that Drs. were something like God on roller skates and it's been very hard for me to be assertive but once I reminded myself that they are really just service providers that helped me. I also had a counsellor tell me that sometimes Drs. themselves believe that they are really mythic heroes and are not always good listeners or good communicators. She said a good technique to use when you feel you are not being listened to is the "broken record". Repeat your concerns until you get an answer that satisfactorily responds to your concerns. Good luck on your journey.