Finally got appt w/epileptologist

By MissPuff Latest Activity December 23, 2010 at 3:47 pm Views 2,959 Replies 6 Likes 1


Well, it took almost 3 weeks, but I finally got an appointment scheduled to see the epi in February. It seems like a long time to wait, but I guess getting in to see an epi isn't that easy. Are there just not enough of them?

They sent a questionaire for me to fill out & bring with me. They want me to bring someone who has witnessed my seizures. That's a little difficult as I'm usually alone & when I do have seizures, they aren't the kinds where I'm jerking or flopping around. I was holding my son's hand a week ago & it started jerking a bit & my husband (who will be taking me) has seen me when I'm massaging my hands from the electrical shocks of the myoclonics, he's seen & heard me when my speech gets distorted & I can't comprehend, & I always tell him when I'm having the tonics, but most of my seizures aren't seen. I don't know how much my husband will be able to help me at that visit. I guess I'll just try to explain things the best I can. I keep an epilepsy diary which I will take with me. I think all my types of seizures have occurred & are recorded in that diary. Just got to wait & see what happens.


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Replies (6 replies)

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  • MissPuff
    MissPuff March 9, 2011 at 10:25 pm   

    Well, Im in my 3rd day with my epilepsy hospital study. My epi came in this morning and said something about catching 33 seizure types! I knew there has been almost non-stop seizure activity since I have to stay facing the monitor & it shows activity, but 33 types? Anyway, he wants to catch the ones that leave me confused, so I'm being sleep deprived tonight - until 3 a.m. I laughed when he said that & told him I only had 4-5 hours sleep last night. He laughed & said we'll add to it. What I don't get is how are they going to know if I have that type of seizure? I'm not up getting lost or misplacing things like at home. I'm not having conversation & suddenly having trouble comprehending things. But family & friends have assured me that it must show up on the sensors somehow.

    They want me to push a button whenever I feel something odd, but I'd be pushing it every few seconds sometimes. So I just push the button, say what is happening, wait a few seconds & say"There it is again" or whatever else is happening. I hope it's enough for them.

    Anyway, I'll keep everyone posted.


  • riverkings
    riverkings February 11, 2011 at 12:27 am   

    Have you had your appointment yet? Please let us know how it goes.

  • MissPuff
    MissPuff February 11, 2011 at 10:47 am   

    Hi riverkings. I am seeing my epileptologist this coming Wednesday. I'm actually doing better now. I had two increases of my Vimpat - one late in Dec. & one the middle of Jan. I still have a few seizures, but even they are milder. I'm on 300 mg of Vimpat daily. The max allowed is 400mg. My epi may decide to increase the Vimpat to the max or increase my Valium (I'm still on a low dose with it) in order to hopefully stop all the seizures. It would be great to stop even the mild seizures.

    I have just two side effects - my liver enzymes are elevated (normal is 35, mine are 92), which is a "normal" side effect of Vimpat, & I'm still slowly but steadily gaining weight, about 2-3 pounds a month. I've gained about 30 pounds in the last 7 months while trying different AED's & I've been on the Vimpat now for 3-4 months, I think.

    I hate the weight gain. I had already gained 60 pounds 5 years ago when I took Seroquel for a month & have never been able to lose it. Now with the additional 30 pounds, I look like a beached whale! I looked at myself sideways last night & was so disgusted. It doesn't matter what I do, I can't lose the weight. The Seroquel changed me, my body chemistry. We had 28 inches of snow last week & I was standing outside in a short sleeve shirt, watching my husband shovel snow. Yesterday was 5 degrees & I still didn't wear a coat - just a long sleeve cotten shirt. We have the heat in our house set at 70 degrees I'm suffocating.

    Sorry to get off subject there. Anyway, I'll let you know how it turnsout next week.


  • MissPuff
    MissPuff March 17, 2011 at 2:11 pm   

    Update: I came home Sunday evening. Turns out I have a few more seizures than I knew about. Well, one I knew was a seizure, but I had the wrong name for it. And another type I had no idea what type it is. I have one more that I don't know what type it is.

    I have one that affects my eyes & I thought it was myoclonic. It turns out that it is an occipital seizure. Well, this occipital seizure is followed later by what I always termed nocturnal seizures, which are in fact tonic clonic seizures. So I now have the names for 10 types of seizures I have. Now I just need to know what the 11th one is.

    Anyway, while in the EMU, I had a lot of seizures, some I was aware of, some I wasn't. For instance, on my way home, I called my son & told him about how only a few people called me, that I spoke to my husband a couple times a day & I called him (my son) once, but he never called me. He said I called him more than once, I called him almost every day. I said I didn't & he said I did. I have no memory of it. When I got home, I called the EMU & told them about it & they assured me it would be on the video.

    I was a little disappointed that I didn't have a tonic clonic while there, although I may have & just wasn't aware of it) I've know about them at home because I've banged into the headboard or the dresser beside my head & have wakened my husband. Well Monday evening, I was watching TV & had theoccipital seizure, then during the night I had the tonic clonic, waking my husband up with me thrashing all over the bed. He didn't say anything about it Tuesday morning, but he came in & tried to wake me up & I was barely aware of him. He came in again & said I had to get up or I would miss my bus for my doctor's visit. So I got up, but I was groggy, had trouble focusing & had a headache. While waiting for the doctor, I felt the back of my head & found a large lump. I took something for the pain & called my husband & he told me about my thrashing around during the night. Then after the doctor (ENT) checked me out, he noticed my sluggishness & confusion & I told him about the seizure & the knot on my head. He felt it & wanted me to go to the ER or see my neuro (they are on the same floor of the clinic). I told him I had another appointment in the building next to the clinic & couldn't see anyone yet. He asked how I would get there (about 1500 feet away & on snow) & I said I was going to walk, but he wouldn't let me & had his nurse call a clinic supervisor to take me over. I did leave a note for my neuro - he didn't call until the next day. In the meantime, after I left my 2nd doctor, I called my epi. He said to wait on any increase in meds because I was off of them for almost a week & they had to build up in my system again. I don't realy agree with that since I've been having these for quite some time - this was the 2nd one this month. When the neuro called yesterday, he said to increase my Vimpat. So I don't know what to do. What does anyone else suggest?

    Anyway, it will be a few weeks before I find out anything from the video eeg. But I'll keep everyone posted.


  • riverkings
    riverkings December 27, 2010 at 10:43 am   

    I'm glad you were able to get an appointment. It always amazes me how long it takes to get into a specialist, I think it can be ridiculous. I know a couple people that it took 6 months to get the initial appointment with the neurologist. I'm glad your husband is going with you even if you don't think he will be able to contribute much I always think it is best to have the support and another view of what is happening. Good luck with your appointment, let us know how it goes.

  • MissPuff
    MissPuff March 2, 2011 at 10:47 am   

    Well, just a few more days until I go in for my video eeg. I'm kind of looking forward to it because I hope we can find some solutions that will help, but I'm also sad about it being so far from home & not getting to see my family & friends all the time. But there is always the phone. I'll let you know how it turns out.