Well, went to the doctor yesterday

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Zoofemme

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and just came home frustrated :( The missing chunks of time which I had hoped were just a med side-effect or maybe dozing off (reaching maybe) are little seizures. She also noticed a stammer/stutter starting to leak back into my speech which I thought was just the aphasia thing with the Topomax but she thinks THAT might be little seizures too!?!?! :crying: I guess it has something to do with where my scar tissue is? SHe hadn't gotten the results back from my ambulatury eeg yet so don't know what went down with that. While she was checking my reflexes she says my right side is lagging and I got a tremor going on and then she noticed petechiae all over my arms and asked if I had them on my stomach, I told her I didn't know so she checked and I did so that led to her ordering a blood panel to see if my platelets were working right. I'm just sitting in my chair pretty much dumbfounded and trying to absorb crap and trying not to get angry (my Mom was running her mouth too and that wasn't helping).

She ended up increasing my lamictal again by another 50mg...I told her I wasn't liking that because of the moodiness issue. She said if I had that issue again then she would ramp me down off it and on to Depakote. She is also taking me off the trileptal (Yeehaw!!).

I'm not letting my mom go in the room with me anymore, she keeps bring up stuff and saying "I thought you knew"....grrrrr. This time it was some stupid tremor/twitch in my cheek I supposedly get frequently and have gotten for a long time. That distracted me so much that I completely forgot the other questions I wanted to ask the doctor.

Ugh.
 
Sorry to hear about how stressful things have been. I discovered recently that I might be having seizures that I'm not aware of too. A couple of weeks ago I went to see a neuro-psychologist to see if I was eligible for government help. She wanted to talk to my brother as well to hear what a 3rd party might say. My brother told me that she said it was possible that the reason I did so badly in school yet thought that I knew it inside out was that I was having seizures but not knowing it. That sort of shocked me at first but I've been like that my whole life. After thinking about it for a day or two I realized the only difference is that now I might know why I've done so badly in school.

I'm hoping that if you do have seizures you're not aware of that this is the first step to dealing with them & the situations they've created in life.

I can relate so so so well as to why you don't want your mom in there. Mine was very similar. If ever I went somewhere with mine I knew somebody would do all the talking for me, even it a question was directed at me. As soon as I was old enough to see my neurologist on my own I did.

Good luck ZF.
 
Zoofemme,

The medication side effects sound hard. More lamictal? I wouldn't like that, either. I'm also sorry about your altered consciousness seizures. Did your neurologist say what kind? (absence, complex partial, etc?)

I can't remember things at my doctor's appointments either. When I have a doctor's appointment in advance I write down a list of all the things I want to ask him in order of importance. I check them off as I ask them and write down the answers. I ask him to slow down if I need to. If there isn't time to get through the whole list I save the rest for the next time.

I'm hoping the dosage change is going to get things under control for you. *keeping my fingers crossed*
 
My neurologist just called today to tell me that I have Temporal Lobe. He wants me on Lamictal. I am scared to start ANY medications. Those of you that are taking it, any words of advice on what I should expect?
 
Manda,

Welcome!

I'm sorry about your diagnosis. It can be so hard. I have temporal lobe epilepsy, too. Read through all the old posts in here and you'll get an earful about TLE. A lot of things were happening in my life that I didn't realize were seizures. Knowlege is power - when you know what is a seizure you'll have a better idea how well your medication is working.

Each Med is really different for everybody. I happened to like Lamictal - I actually had a brain on the stuff. It didn't affect my memory or thinking, and I had very few side effect. But I got a huge rash, so I had to stop taking it. I had to quit cold turkey and that was AWFUL. I had tons of withdrawl symptoms and a bunch of complex partial seizures (altered conciousness). Some people hate lamictal, and have lots of side effects. It just depends on your own body. One thing about lamictal is you have to ramp up on it very slowly. Follow your doctor's instructions on that exactly to be safe.

Hang in there. It all does get better eventually.
 
I too had an AEEG/ambulator EEG which found out info that my in-office EEGs didnt besides driving responce to flashing lights.
It hurt my feelings to find out more info even though I knew it was nec to do this.
I was dx with complex partial sz at age 6 but did no treatment since mom was scared of further treatments. Born 3months early, we had many many medications that might be responcible for my disabilities.

Take the info, research if you like and take notes of your appointments. It might help you to relax and keep info somewhere where you can access it when needed for futher appointments.
Also, I keep a binder with copies of files and questions/concerns for my next visit. I read it aloud to me neuro as well as my seizure journal and migraine journal..
I ask questions and don't care about "being a pain" like I used to think. I was shy and would not ask questions or anything before.. Now I do because its very important to know thing sabout your health rather than say "well okay whatever you say.." you know?
I am not saying this is what you do- its what I used to do/think.

Please take care and rest
Crystal and her guide Umbro
 
Thanks everyone. I just realized after re-reading my post that I put down my appointment was yesterday...it was actually tuesday. Ack! I forgot to take my siezure journal with me too so when I was asked about them I couldn't give a good answer.

epileric- I wish my husband could go more often. he's the one who's most likely to be around if I'm not alone when I have a seizure and can describe things more objectively. He does have to work though so my mother takes me to most of my appointments. I just hate that every time I ask a question when I go in I'm now told "that's a little seizure", its getting to be ridiculous.

Robin- my stutter is the anomaly. I tried to explain it to my neuro the best I could but I can't imitate it when I'm "normal". I wasn't all that aware it was leaking at the appointment, probably because what happens after a seizure is full-on...nearly every word is a struggle. Aphasia/memory is a med side-effect, its not every word, so I figured that is all I was dealing with...no big deal.

endless- she only talked about complex-partials so i would assume the new one(s) are that too. My husband let me know he would inform me immediately if my mood got outta hand so i could tell the doctor about it. She wants to be able to have me on Lamictal as a monotherapy...I'm not convinced yet since I seem to be having more seizures vs fewer.

manda- I haven't much to add to what endless has said, it is always scary when you first start tackling this beast. I've been on lamictal at a low dose for years and had no problems...they started messing with my meds though because my seizures started getting all wonky.

Crystal- I usually take a list in with me too and my seizure diary :( My mother got me distracted by showing up early and i ended up leaving everything sitting on the table. I at least remembered to ask one improtant question, lol. Take care yourself and give Umbro a good belly rub for me :)
 
As said above I always take in a list of things that I want to tell the neuro. I have a little pocket calander that I keep track of them in. How long they lasted, what I was doing at the time and how I acted during the seizure. My memory is horrible so I want to get everything there if he has any questions.

I usually type out everything out on the computer, make a copy for him and for myself. I have a binder that I keep everything in so if I need to look back for something I have it right there.

I list all the meds that I'm on, the date of the seizure and as I said above how long it lasted, what I was doing during the seizure (not understanding things, talking wierd, shaking etc). If I have any questions about that peticular seziure I write it down with it. I also write down any questions that I want to ask. I also make sure that if I need a refill on any of the meds that I make sure I write that down too.

If I have any questions that I want to ask I put them on there. If it's something that I want to make sure I don't forget I put it in bold print so it stands out. I try to always go with my husband because he is the one who is usually with me when I have all the seizures. He works and will usually have to take a day off of work so it's hard for him to go sometimes.

Talk with him when you are making the paper for your neuro so you can get things right and your mom won't try to tell you "how it happened".
 
Wait....there's more

this probably belongs in the Padded room by now :(

I had a seizure again Tuesday while I was at the lab waiting to get my blood test done to check my serum levels. I called the neuro to let her know about it because I have been told by my family that they will call if I don't. THe neuro prescribed ativan for the interim and that pissed me off so i called back and told her nurse that unless she came up with a good explanation as to WHY she wanted to throw another drug at me I wasn't going to take it. THe doctor herself called me back later that evening apologizing for offending me and explaining her reasons for the ativan so I went and picked up the prescription *sigh*. I only take it thru tomorrow but it was the idea of it all.

Today I get another call from the neuro's office...my blood tests were back and again all were too low :( I take my meds religiously, never miss a dose, take them 12 hours apart. THey are adjusting my meds again. The Trileptal which I was suppose to stop taking friday now stays (300 mg at night). THe Topomax (100mg X 2) is being increased another 50mg with the night time dose and the Lamictal I stay on the current regimen of 100mg in am and 150mg in pm for 2 wks then add 50mg to the am dose. The whole idea discussed at my appointment was to get me on ONE med (!) not keep me on everything and increase it again :soap:

I'm so tired...its wreaking hell on my home-life. I'm getting to the point where I'm starting to hide things too if I can. I went back to bed this morning...I woke up with my tongue bitten. The only other time I've bitten my tongue is one of the rare times I've had a sez in my sleep. I've been having these odd occurences where my vision is getting wonky beyond the usual "double vision" I have...this is like it is trailing when things are moving (think acid trip)...it lasts for about a minute or so then everything shifts back to normal. Make me nauseaous and my head hurts for a bit afterwards but not migraine hurt. THis usually happens in the morning right after I first get up. I would just really like things to be back the way they were...even if it is only for another 18 mos, that would work for me right now.

Thankx for listening.
B
 
Zoofemme,

I don't blame you for being ticked off about being on all those meds. I would be, too. It does sound like your doc has her reasons. She wants to get you seizure free.

Did she say anything about why your meds may be at low levels?

The vision thing - are you able to function like that? My vision looks like I'm looking at everything under water. It makes it really hard to read, and my eyes hurt.

I wish everything would get easier for you. You've been through the wringer.
 
endless

No, she hasn't said why my levels continue to be low. I know I had the same problem when I was on tegretol and the neuro I had then couldn't figure it out either.

The double vision thing is something I've had for a llong time. It affects my far vision more than anything else and only recently has started to bother my near vision. I see faint "ghost" images around things. I can usually blink or squint things into focus. The trailing thing though...ugh.

I just wish I knew what kicked everything off again. I keep going over it all. I started getting bad headaches in Kuwait, I attibuted it to dust storms, i had a seizure, stress and overwork, I get back to the states evrything is great but the headaches are getting worse, dizziness is kicking in, I'm running into things, loss of appetite, seeing double (freak out!), have a seizure, freezing ALL the time, can't sleep, twitching is getting stupid, headaches won't stop evrything is wearing me down, go to pcp, he blames it all on smoking, refers to neuro, tests, med levels too low, everything spirals out of control.

So, I keep coming back to the meds...did the first seizures occur because my meds were starting not to work anymore or are my siezures continuing because my meds are being messed with too much?
 
It sounds like things are pretty out of control. I'm hoping the increase in your dose will take care of it. When do you have a blood test again? And don't wait so long to go in to see your neurologist!
 
I was intersted to read about those of you who have stuttering issues. It is now one of my symptoms also. It happened first after my first loss of sight just before diagnosis of the brain tumour and it has resurfaced in the last six months 12 months post surgery. I am supposing that it is more evident after a seizure but as I am not sure what type I am having yet I just accept it as being a marker for post seizure events. Two days to go and I have the five days monitoring in hospital. Joy oh bliss! Looking like Frankensteins's misses but hey! no washing, ironing or housecleaning for a week! So looking forward to ward diets :pfft: I have researched some sites and so far have identical symptoms to myoclonic and partial episodes. Was a bit disconcerting when I found myself looking at a teaspoon and having no idea what to do with it. Needless to say, hubby finished making the cup of tea. Thinking of all fellow sufferers and wishing you all reasonably good days. Catch ya later!
 
Yeah,

My med levels on Keppra are running "below" therapeutic and my Neuro keeps asking "are you SURE you are taking the meds?" Of course I am! ARGH. So I'm off this weekend for another blood test this weekend and see what happens in another week!
Neil
 
lol endless...I am the great procrrastinator, I will find any excuse i can think of to avoid going to the doctor/hospital. My husband had to threaten to tie me up and carry me out to the truck get me to go to the ER when i had all those seizures last month. My appendix ruptured and I ended up with perotinitis because i figured I just had gas :roll:

My next blood test is in 20 days.

Spookz, this is the first time a neuro has ever mentioned that my stuttering "might" be small seizures. It usuall occurs in the post-ictal phase now and normally works itself out over the course of a few hours if I only have one big sez or can go to sleep. If I have more than one big sez it gets pretty bad and takes longer to go away. This last time they used topomax as a rescue med and it helped with my speech some which was great. Hope your video EEG goes well...Frankensteins missus, that's a good one, lol. I alsways call it the Medusa hat!

endless...neuro wants to see me every 6 weeks now, she apparently does not like the way things are goiing. I keep waiting to here that god-awful phrase "video EEG" (no offense to others). I AM NOT a good patient and I tend to drive nurses over the edge :twisted:
 
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My neurologist's physicians asst (who I would see every other visit) was accusing me of not taking my meds and that was why I was having as many seizures that I was having. (Needless to say I don't see her anymore and every visit is with my neuro. The whole office knows I hate her.)

I was taking very high dosages of the meds that I was on so we really didn't want to increase them any more than they were. My neuro suggested that I get a VNS implant. This has helped me alot. I am still having to take meds but nothing like I was before. A am also still having seizures too, but they are much less often and also nothing like they were before I got the implant.
 
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