And my miracle drug turns against me

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Lamictal starting giving me my life back a few weeks ago - i still couldn't move around much or climb stairs without needing to rest, but I was able to think, and move, something I hadn't been able to do for about 3 months before hand due to out of control excessive seizures. So of course I loved it.


But today I got the dreaded rash - it looks like flea bites all over my body. So i have to stop taking it. I just hope whatever i'm put on next has no side effects AND lets me have some degree of normal energy.

Have you tried the ketogenic diet?

That really sucks I had the same reaction to an anti-depressant that was supposed to help me quit smoking...it was really awesome and then my feet and hands started itching uncontrollably...after going off the med and a treatment of cortisone...my hands and feet stopped itching and I just had a recurring rash...for the next year. It seemed to over stimulate my immune response and make me allergic to everything. Now I'm afraid to try anything "new" .

I hope you find something that works for you.

On second thought that rash, that brought painful spots all over my ears is the best thing that happened to me.

because now i know that my fatigue, confusion, poor short term memory werent just left overs from the bad seizure period I had, but were caused by the medicine that was taking those symptoms away from me in the first place - lamictal stopped the seizure side effects and then replaced it with the same side effects only less severe..

In addition, I thought I injured my neck cuddling with my bf last week (or possibly from a nocturnal seizure). I have badly strained a muscle in my neck before - from getting hit on the head with a volleyball in gym class, and to make it worse, I was just waiting for that volley to be played so I could safely move out of the range of the volleyball to keep from getting hit. This was feeling like that, only no where near as bad - that time it took me four hours just to get out of bed. i remember having wverything below my waist off the bed and everything above on and having to rest for a long while before I could continue getting up.

it seemed to be getting sore, and I've been dreading laying down. Not just because of the pain but because I was afraid I'd injure it worse and end up having to repeat getting out of bed in a way that takes 4 hours. A few days ago it was causing me to get a severe headache when i looked a certain way or turned my neck quickly but the headache gradually reduced

Today when i touched it I felt a small sore bump, so i was thinking it might be part of the rash. Then I also noticed the pain went from the right side of my neck to the left, and at first i thought maybe I just overcompensated. Then I became scared just now because i couldn't really turn my head side to side or look down. Since I noticed I'd feel better if I put a bra on for a few hours, then when i started feeling bad, I'd feel better if I took it off, I was thinking the pain was indicating that I needed breast reduction surgery

I did bring up the sore neck to the doctor, but i didn't explain much about it because then the headaches had went away and it was only a small spot on the side of my neck that was sore. I'm going to call the office tomorrow and see if I should go to another type of doctor for treatment of my neck, or wait a few days to see if my neck gets better as the lamictal leaves my body

but I've also noticed my throat is dry when it feels the worst but it doesn't even appeal to me to drink then - and i feel like i'm going to vomit when i try to drink. When my desire to eat came back I discovered i was afraid to swallow because it felt like the right side of my throat was pushing inward. When i was about to sign off today i noticed i didn't "feel" like moving my head to look down, so i tried gently moving my head and discovered even slightly looking down or to the side caused me pain. I got in a hot shower to help that but I still can't move my neck anywhere near the range i should be able to. Looking online i think the lamictal caused my lymph nodes to swell.

I just did an internet search and there are a lot of people complaining of neck pain, as bad as whiplash, from lamictal so I'm going to call the doctors office tommorrow and see if I should go to a specialist for treatment of this or wait a few days to see if its going to go away on its own as the medicine leaves my system.

If i hadn't gotten this rash I'd still be taking those pills. Now i'm a bit afraid to try any other medicine. This is worse than having constant seizure activity all day long. Besides now i'm awake so i can actually feel the pain i'm in

And i'm afraid to lay down even though i'm really tired right now, i don't want to end up in a posture that makes things worse for me. And i can't even take anything for the pain, to reduce swelling, or put something such as bengay on it, because that will prolong the rash

Last edited by Triangular_Trees on 23 Jul 2008, 12:14 am, edited 1 time in total.

and dang it, i just saw a disclaimer on a site about lamictal side effects saying to quickly call your doctor if you notice you have a fever. One of the these i was planning to ask her about was how easy it was for my face to get really hot and i was having a forehead hot to the touch most times. If i had read that before i could have probably avoided all these problems.

The only thing i remember being told is that i was to stop taking the medicine immediately and call the doctors office if i saw any sign of a rash that couldn't be explained by something like i had just walked through poison ivy.

Uggh, i'm definately going to research keppra thoroughly before i let her put me on it. I don't think i would have let her try this drug if i had read the side effects for it, even though it was the best one for me given my other health conditions. I didn't have a chance to read anything on this before starting it because i was in the psych ward (because obviously no one can be having a non convulsive seizure, any one who thinks they are having complex partial seizures is psychotic) And i was just hugely relieved that i finally got a doctor to believe that i wasn't imagining or exaggerating my symptoms

I didn't get the neck pain with lamictal, but I did get the rash....and a really bad case of it. The skin on my the palms of my hands and the soles on my feet blistered and like second degree burns and peeled off...my eyes were all crusty and stuck together....and the inside of my mouth was ripped to shreds...my lips were swollen cracked open and bleeding.....and that rash was all over. My lymph nodes were swollen and sore, and I had a fever. I took it for only a few days and I only got into the beginning of the dosage ramp up........

It took me almost a month to heal from that mess, and that was the second time I'd had a Stevens-Johnson reaction to a drug...my psychiatrist actually knew I got SJS from and antibiotic once before and she said it was a totally different class of drug....whatever.

I understand about being told you are psychotic when you are describing partial seizures....from my understanding never use the word hallucinating when your are describing visual, auditory, gustatory, or olfactory "disturbances." I was describing the taste and small of burnt almonds accompanied by nausea, vertigo and what I thought were hallucinations (stuff like tunnel vision).....and I kept being told I was psychotic, and that maybe I should check into a psych ward for treatment....

It turned out the medication I was taking was causing the seizures....and they were in fact seizures (confirmed by an EEG), and most likely caused by an antipsychotic I was taking.

Ugggh, I'm glad I was able to stop the medicine before I got that bad - though I did have to cover my entire body in moisturizing cream and put moisterizing gel in my nose last night. And my tongue keeps getting "glued" to my teeth. I also know my gums are swollen because i have an overbite and the gums are pressing on my teeth

The current neurologist told me to not go to the one local hospital because as soon as you tell them you have seen a neurologist they involuntarily commit you to the psychiatric ward. She said she stopped going there because of it

I made sure to lie every single time I was asked if I had ever heard voices. Well, yeah I have, but if you are keeping me in the psych ward even though you've already decided the mushroom cloud coming out of my hand wasn't psychosis, and I've already had my epilepsy misdiagnosed as schizophrenia in the past, do you really think i'm going to tell you about the voices I've been hearing?



I told them I had epilepsy, this was the same feeling I got that I was told was a minor seizure, and that my seizures were known to cause hallucinations and make me become violent. Still the doctors thought I was psychotic. Though once in the pysch ward there was only one doctor who thought it was good for me to be there rather than on a medical floor. unfortunately he was the doctor that got the final say on whether or not I could walk out right then.

They kept trying to force me to take this one medicine there. Pretty much every single patient in there was on it, which in itself was highly suspect. Every day I'd be called into my meeting, and a woman would say "and she is refusing to take her respidol (something like that)" and then I'd get a lecture on how I needed to take it. But the final day when the doctor had the results of my EEG in front of him, he answered the women's snide remark with "well thats unrealistic" rather than give me a lecture on taking it.

I think that arsenic or strychnine tastes like burnt almonds and it certainly makes you hallucinate...do you think there is a way that your own brain chemistry and a medication could have combined to make something like that

I'm not quite sure exactly what caused that, although it's not too uncommon when having a partial seizure to smell or taste something burnt. I don't know exactly why that particular drug caused those seizures. I've never been known to have epilepsy, so I didn't know that what I was describing to my doctor was actually symptoms of a partial seizure. It wasn't until I started randomly passing out that I realized something was really wrong with my brain and I wasn't just crazy. My psychiatrist didn't believe me though.

In the past I've suffered from what I thought were optical migraines.....I'd see auras, get tunnel vision, and feel nauseous...sometimes I'd get a really bad headache on one side behind my left eye, and other times never actually get the headache, but rather have some gastrointestinal upset.....Those could possibly be seizures rather than migraines. I don't get them very frequently so I was satisfied with the diagnosis of migraines I got when I was about 19 years old....I never thought to question it.

It's possible that the drug simply worsened the seizures I was having and made them occur more frequently, by slightly altering my brain chemistry. They didn't alter my behavior that I know of, just made me feel very strange and kinda sick.....but still my psychiatrist was convinced that auras and tunnel vision are symptoms of psychosis, and couldn't possibly be something other than that.

Anyway.....Triangular_Trees...I hope you feel better soon.