Latest Neuro Visit

[Zoofemme]

Well, I saw my neurologist this past Monday.

The visit started out awkwarldly because at first i couldnt figure out what/who she was talking about. SHe was going on about jerks and frontal lobe seizures on EEGs and my meds working and some other stuff and I was like "huh?". She had to go back further in the file for me to realize she was talking about me SHe still doesn't know what to make of my smell auras since they haven't happened when I was wired up. I had to explain to her again that they are stand alone and don't presage a generalized seizre or a migraine. We talked about my zoning out some more...haven't caught that one yet either that i know of unless that or my jerks is what pinged the frontal lobe activity she mentioned. That one still confuses me since I'm suppose to have temporal lobe epilepsy complex partial seizures that generalize. WHen I was wired I pushed the button because my face kept going numb. She said it showed no activity then. Interestingly enough the cymbalta I am now on for fibromyalgia has gotten rid of the face numbness so my guess is that is some form of neuropathy. We talked about my jerks, I told her they were back to being like they have always been...mostly I have them when I'm really tired and/or usually in the mornings and evenings. THey had gotten really bad when she was messing with all of my meds there for awhile. I haven't bitten my tongue in my sleep that i could remember since my last appointment so that was good.

I'm still having vision problems though and my memory and cognitive abilities are crap. I also haven't gotten any relief from my joint pain. She is consulting with my rheumatoligist on my fibro so she decided to go ahead and start me on lyrica before my rheumy appt next month. SHe also said that it would be a good adjunct seizure med for me. Now wait a minute...this is the same woman who said that she eventually wanted me on one szr med...then realized that might not be possible, then said she still wanted to get me on one, then decided that wasn't going to happen but 3 was too many so weaned me off the trileptal, then says I'm medically refractive, then rx's a pain med and says "btw, this is an adjunct szr med for you too so call right away if you experience any breakthru seizures. I never prescribe this as a stand-alone but it should work well for you as an adjunct with your other meds ". I love my neurologist but sometimes it all gets exasperating!

I think I now take more pills then my grandmother does...its ridiculaous. Lamictal, Topomax, Lyrica, Cymbalta and Vit. D. I take the lamicatal and topomax twice a day and go to twice a day on the lyrica next week. The cymbalta will probably be increased at my next rheumy visity.

I go to the opthamologist Mon. My double vision has gotten worse, my blurred vision has gotten worse, i see yellow blotches now and I think I'm getting tunnel vision...just what i need, something else going wrong My neurologist thought it was important enough though that she got me an appointment with a different opth from the one I normally go to (he's been a PIA to get an appt with). She didnt see anything swollen or inflamed but wants to be on the safe side.

I feel so sorry for DH though...he has to live with me and I'm not an easy person to live with right now. The cymbalta has helped immensely with my anger but I'm still a PIA. I try to explain what is going on but a make a hatchet job of it...the whole "its my illnesses" seems like such a cop-out to me , for me

[Endless]

Hi, Zoofemme,

Oh, man. The news about the seizures being refractive is tough. I'm so sorry. <<<hugs>>>

Lots going on... Lots of meds. Did the doc say what her long term plan is? Or what the goal of each med is, and how they fit into the entire picture now?

I'm so glad you are seeing an opthamologist. It's important to catch things early while you can nip them in the bud. Out of curiosity... have you ever had a lumbar puncture?

[Zoofemme]

I have to get my levels tested next week because she wants to see where they are. Too high or low then she is considering messing with them again to see if any breakthru szrs occur. I hope neither because I have big szrs everytime she adjusts the dosage LOnger term; she said if I go for a year without having a big szr we will decide where to go from there. Kinda open ended isn't it, lol.

Two anti-E meds are used to control my big szrs now. Lamictal and Trileptal weren't doing it. Lamicatal was increased first. Topomax, which was only suppose to be low dose for my headaches, had to be increased to help out because I was still having szrs. Triletpal had pretty much ceased to serve any function at all so was discontinued (probably a contributing factor to my starting to have them again ) Cymbalta and Lyrica are suppose to be for my fibro pain. Cymbalta has an added benefit of dealing with neuropathy and depression (my anger). It doesn't do squat for my joint pain though hence the Lyrica. WHy as an adjunct? I'm not sure. The only thing I can think of is the frontal lobe activity but I'm not even positive that was from my 48 hour EEG...I'm assuming it is because that was the last one I had. All she said was "your EEG showed..." I think with all of the doctors that are getting involved it is getting more difficult for me to keep track of information and I'm never sure of what to tell to who anyore

I've never had a lumbar puncture. The last time anyone mentioned it was when i was 14 and had been in a car accident. I was losing blood someplace and they couldn't figure out where...they wheeled me down to X-ray and some guy came toward me with this HUGE frigging needle. I threatened to punch his lights out and beat the crap out of him and every one else in the hopsital if they came anywhere near me with it. Ummm...the needle wasn't meant for me but I didn't know that at the time Made a fool out of myself and almost ended up in restraints, lol.