What type of medication is everyone on and...

[RachelinAZ]

why was it chosen? I lived in Alaska all my life (up until 2002) and was on Dilantin. However, the Dilantin ate away my gums (realllly bad) and I am now on... uhhhh Tegretol (I do hate the memory loss. I've been on the drug long enough I should just KNOW IT... right?) 400mg 2x a day.

I have a birth defect, in which I can't have anything that thins the blood or messes with platelets... so I am pretty limited.

My current GP doctor (still trying to get into a Neuro), feels I might be having petite mals.... I have had conversations I have no memory of. Or say playing a game, I have no memory of, or watching a movie/show. I might remember vague parts.... but not the entire time.

I also did not know, my potassium could be low from the Tegretol. So I drink a low sodium V8 (perfect amount of potassium! My old neuro taught me that).

 

[Cint]

I take 3000 mgs of Keppra and 200 mgs. of Topomax. I'm on those two drugs 'cause I've tried Dilantin, Phenobarbitol (had an allergic reaction to)and Tegretol. After trying those three initially, I had a left temporal lobectomy and was seizure-free for 14 months. Then the seizures came back worse so my neuro tried some of the newer meds: Felbatol (gave me horrendous migraines), Neurontin, Lamictal, Sabril (made me suicidal), Trileptal (low sodium level), and now the Keppra and Topomax (dopomax). I also have the VNS because none of the meds work entirely for me.

 

[Nakamova]

I'm on Lamictal. I started off on Dilantin, but I started to have gum overgrowth, and was also worried about potential osteoporosis. Next I tried Zonegran, but it made it hard to eat properly. So I ended up with Lamictal (150mg/day), which I've been on the last 4 years.

 

[MaryK]

I am on phenobarbital and have been for 40 years ( I am almost 60). I do have osteopenia in both hips, lower back and osteoporosis at T11-12 and L1, as a result of this drug and prednisone. I cannot remember if I ever shared that I also have RA, Sjoegrens, and thyroid nodules so I take Plaquenil and 3 mg prednisone a day which also are not good for your bones. To help with this bone loss I take a really good calcium/magnesium supplement that contains equal amounts of calcium and magnesium plus vitamin D. I will have another DEXA in the October. I had one fragility fracture 2 years ago when I fell down the stairs and fractured my elbow.

 

[RachelinAZ]

Interesting. I have LOST almost all my gums around my teeth from Dilantin and noticed I am still loosing it from Tegretol. I was told I had teeth of a 60 year old who did not brush from the Dilantin. :/ Years ago I was told that.

I do have a hard time eating... I have to force myself, but I am doing better since finding out my thyroid was out of wack. Really out of wack almost not working and almost zero Vit D in my system.

I'm on Lamictal. I started off on Dilantin, but I started to have gum overgrowth, and was also worried about potential osteoporosis. Next I tried Zonegran, but it made it hard to eat properly. So I ended up with Lamictal (150mg/day), which I've been on the last 4 years.

 

[RachelinAZ]

No one has ever told me about osteoporosis, other than when your older, it can be an issue. Is it from the drugs?

 

[Nakamova]

Many of the anti-seizure meds interfere with calcium absorption, so over the long-term they can contribute to osteoporosis. It's usually a good idea to take some sort of calcium/D supplement.

 

[RachelinAZ]

These are two different things calcium/D supplement correct? I am on 50,000 ?? or 64 grams (comes out to the same and I always remember the grams for some reason) twice a week or every third day.
NO one, up until my current family doctor had ever checked anything.... even levels of meds (unless I had a seizure). I now get a host of things checked, including my iron, which I do not retain and need infusions.

Many of the anti-seizure meds interfere with calcium absorption, so over the long-term they can contribute to osteoporosis. It's usually a good idea to take some sort of calcium/D supplement.

 

[Nakamova]

Since Vitamin D plays a role in metabolizing calcium, the two are often bundled together in a supplement. Sometimes magnesium is added too.

 

[RachelinAZ]

Hmmmm I am going to have to ask my doctor. I know my calcium has been checked (back in Feb), same time my Vit D was checked. She didn't seem overly concerned except for thyroid and Vit D.

Mine is a prescription strength Vit D only.

 

[Cherriuz]

I have only just started on Lamotrigine. Working my way up 25mg a week - well I say only just, just about to start week 4 which will be 100mg a day. Felling pretty okay at the moment.

 

[RunningGirl85]

Just started on my first meds... I'm on Keppra, 750 mg, twice a day. After my first Tonic-Clonic, the neurologist put me on Keppra then as well (though I don't remember the dosage because that was over two years ago, and I was only on them for a month), but when my EEGs all came back normal, and because it was my first seizure, he took me off because he didn't see the purpose of keeping me on AEDs when nothing showed me as being epileptic (despite two seizures... on the same day).

After this last T/C (my third one ever), and when I told my neurologist about the auras I'd been having more and more frequently in the past year (and with my last EEG coming back abnormal), I guess it was time for me to try some medicine again... I couldn't tell you if they are working, though, as I've had more auras. I also have no idea if my extreme sleepiness/slight depression was a result of the meds or everything changing all at once. I changed time zones by 8.5 hours, and went from being deployed to sitting around a lot... So, there were definitely some huge changes in the past couple of weeks. I seem to be more alert now than I was at first (other people have noticed I seem more like myself finally), though sleeping a lot.... I slept twelve hours the other night! But I'm also probably adjusting to my new timezone finally.

 

[RachelinAZ]

I know as long as I take my meds, I don't have any seizures (THAT I know of). However, being off the meds (I am on them for life now), I can promise at least one a year, if not more.

I am going to talk to my doctor about the other stuff that should be w/the Vit D. Make sure we are touching all bases. I was so tired for so long, we switched some meds and added a couple. I feel like the old me, like 25 years ago me.

I appreciate everyone answering. I've been blessed never to be driving while having one. And the one I had 4 years ago, I must have had something trigger me to know I was having one. I was b/f my daughter who was 3 months old, and managed to move her way out of my way before having one.
My sister walked by my room once, and I was b/f, she said she waked by maybe a minute later and I was in a full blown grand mal. :/ Luckily, I had moved Lydia out of the way. Since then, I've been on Tegretol 400mg twice a day. Sometimes if I am feeling "weird" (can't explain it), I will take 200mg more (with my doctor's permission).

 

[CQ:)]

I'm on Tegretol (200mg AM & PM) & Keppra (1000mg AM & PM). I've been on Keppra since 2007 & Tegretol since 2002. I am currently slowly being weened of Tegretol as my seizures are currently under control (no seizures since March 2012) & my neuro & I have a goal that eventually I will only be on Keppra but a lower dose.

Other meds I tried over the last 10 years are Lamictal, Topamax, Neurontin. None of these meds helped completely control my auras or complex partials & I had the worse side effects from Neurontin.

 

[Loopy Lou]

I'm currently on 3000mg Keppra and 600mg Tegretol.

I've previously tried Lamictal and Vimpat. Lamictal made my hair fall out and made me extremely fuzzy headed, Vimpat made me a suicidal insomniac. Since i've been on Tegretol i sleep about 18 hours a day and have put on tons of weight which does nothing for my self esteem. I also seem to be getting a lot of twitches in my neck and left shoulder/arm, but that's only started over the last month or two.

Keppra doesn't give me many side effects but it also doesn't completely control my seizures.

 

[pita300]

I'm currently on Tegretol 1000mg/day 400 in the morning and 600 at night. I've been on the Tegretol for as long as I can remember. When was first diagnosed they started me on Dilantin. I was only on that maybe 6 months. Then came my Depokote phenobarbital stage. Couple years of that then Tegretol was added to the mix. My wife said the Phenobarb made me ugly. (not in looks but attitude:bigsmile: in 97 I came off the phenobarb and strickly Tegretol XR untill April of this year when I started Lamictal ramping my way up to 300mg per day. I believe these medications were just trial and error untill the right combination was found which did'nt happen untill after the right temporal lobectomy. As for osteoporosis I had a bone density test done back in March and discovered I have osteopeina. It could be long term side effect of taking the meds but I have never been a big milk drinker.

 

[LMReggcellent]

I've been taking Lamotrigine for a few years because I've tried everything else. I took it eight or nine years ago too and we're trying it again because it's safe for a pregnancy, and maybe the second try's a charm. I have plenty of rotten stories with the other things I've tried before.

 

[petero]

why was it chosen?...

Dilantin 500mg - because it was given to me when I was diagnosed
5 mg haloperidol - because it was given to me when I was in the hospital
25 mg diphenhistamine - because it helps metabolize the haloperidol
marijuana - because it helps me cope

 

[RachelinAZ]

I find it interesting, almost everyone is on more than one medication.... I've always only been on one medication. Whether it be dilantin or tegretol.

Thank you for sharing....

 

[pita300]

It all depends on type of seizure. Depakote was for my complex partial seizures. After surgery I had Tonic Clonic seizures then I was put on the Phenobarb and tegretol. Reciently I've been expierencing simple partial seizures thats when the Lamictal came in. If I came off the Tegretol I'd have a TC with in days. I don't know if the Lamictal is helping yet as its not at a theaputic level yet and I'm stll have simple partial seizures.