[Raigne]

It was suggested that I start this as a new post so I can get better feedback here on the Epilepsy forum (thanks Doc!)

I've been on Keppra for 9 days. A few days ago I started itching on my lower stomach and my right eye. I thought nothing of the tummy itching. Maybe dry skin (hey, it's Phoenix and dry is a given around here) and the eye was probably allergies.

Today I actually LOOKED at my lower abdomen and there was a rash. A raised, red, bumpy, OMGOSH, rash. And my eye is still driving me nuts. So I looked all over online about Keppra side effects. It said if you get a rash, "no matter how small or mild" to "call your doctor immediately." So I called the dr and was told to quit the Keppra NOW. And that I had to go in to see her on Monday (the PA was the one who called). I said, "I will have seizures all weekend if you take me off the Keppra and I had a grand mal this last time to which you guys said all my seizures will now be grand mal."

The PA said, "Yes, we realize you will have seizures. You'll have to take precautions." I said, "You don't understand. I have a SYRINX in my cervical spinal cord. That's a pocket of brain fluid that has severely damaged my spinal cord. My neck can snap extremely easily. And if I"m flopping around like I did last Saturday - ONE TIME - I'm in danger. I CAN'T go cold turkey." He explained that they have to stop the reaction because it is known to cause a condition where the skin will literally peel away.

The lesser of the two evils is I live with skin peeling away as opposed to dying from a fragile spinal cord. He said he'd call me back and went to talk to the dr. He called back and they called in another anti-seizure med. I couldn't understand what he said because his accent is very, very thick. It began with a B and almost sounded like "bitmap" though I know that's not it.

I also told him this rash is like the rash I get when hospital tape touches my skin. It spreads til we stop it with steroids. Last time I had the rash spread from belly button to knees from having one piece of hospital tape over an incision on my stomach. I ended up getting two big time shots, a topical cream AND a medrol dosepack of prednisone.

I told the PA I happened to have a dose pack of prednisone and asked if I should take it. He said, "Yes of course, take it." He was making decisions on the fly and I finally said, "Look, I have 7 diseases, I take handfuls of medicine each day, you need to be SURE about things - I'm not your normal patient." He said he was sure and that I was to call if there were any problems.

(sigh). Anyone else ever have the rash reaction to seizure meds? I can't take Gapapentin (Neurontin) or anything in that family because of psychosis, and I'm kind of freaking out right now. I HATE that I'm this sick and I can't just be an easy fix. I already figure I'll end up in the ER this weekend...

The drug is Vimpat. Tooooo expensive to stay on and still itching. I have to stop taking the meds for a few days like they wanted me to because the patch of itchy rash isn't going away and my right eye is itching like crazy, too. Ugh. I'm going in on Monday to see what we can do.

[Porkette]

Hi Raigne,

I am so sorry to hear you broke out with a rash from the keppra the same thing happened to me when I was taking lamictal and tegretol. I had to see a Dermatologist (skin specialist) and he did a skin biopsy on me and found out it was the lamictal. The Dr. then gave me a steroid cream to put on my skin to stop the itching and I was told not to itch my skin and when I bathe to use lukewarm water and only dove soap for sensitive skin. Also keep away from any shampoos or soaps that have a strong scent because this will make the rash worse. Be sure to wear loose clothing and stay out of the bright sunshine because the more heat you get the faster the rash will spread. I know it's not easy but try not to itch the rash either because that will also spread the rash. Since you are allergic to keppra don't be surprised if you have the same problems with lamictal and tegretol or trileptal because all of these drugs are very similar and have a lot of the same ingredients/chemicals in them.
I'm glad you aren't taking Neurontin I was on that drug and the drug co. got busted because they found out that Neurontin can cause sz. for people who never even had one. When I was put on the drug it caused me to have absence status sz. where I would be out of it for 30 min. to 3hrs. and it caused more brain damage. Now the drug co. has a @4240 million lawsuit on them. If I were in your place as far as the Dr. getting you off the keppra cold turkey and knowing it can trigger sz. and other medical problems I would turn the Dr. into the Medical conduct board in your state and also make the Dr. liable for any possible medical problems or bills that could come up. Take my word tell the Dr. to do a DNA test on you all they do is take some blood and saliva and match it up to the correct sz. med for you with the least side effect. Don't let the Drs. be making money off of you getting you to try this drug and that drug demand a DNA test to find the correct drug. I wish you the best of luck and May God Bless You!

Sue

[Raigne]

Sue, I'm so sorry for what you've been thru and I really am not surprised Neurontin is getting sued. Their medicine screwed me up for three months of crazy. Grrrr.

As far as taking my new neuro to the Medical Board. I've actually gone before the board before when a pain clinic dr. ATTACKED me with needles in the back of my skull (he trapped me in my shirt and started jamming the needles in my skull and right by my syrinx in my neck - those could have killed me). The Med. Board did NOTHING to him. Except that there is a write up on his rating about it. I decided to pursue legal action because I wasn't damaged beyond the terror of the moment and I just needed to get away from the whole thing. Counseling helped.

I'm from a medical family and because I have so many diseases and specialists, etc, I can tell the good docs from the bad right away. This doc is a good one. I'm just a difficult case. The things I NEED to do to help some of my diseases can't be done because they cause so much danger where the others are concerned. We knew that starting the new drug (remember I was just diagnosed less than 2 weeks ago) there might be side effects and we agreed we'd deal with them as they came. Because my allergic reaction came on so fast and so big, and I'd only been on the medicine for a week at the time, they wanted me to stop til I could get into the office because the risk of the seizures was the lesser of two evils with the skin rash. Because it's such a quick reaction, they are thinking it could be of the bad, rare kind so it was better to stop. I fought them on it at first, which is why she agreed to give me Vimpat for the weekend to keep seizures at bay (it didn't work, I had a seizure yesterday but wasn't grand mal...I'm beginning to think the problem might be her PA saying anything to get me off the phone - she, I and my husband will be discussing this Wednesday morning). But the rash kept on moving even though I started steroids, used itch creams (I had PUPPPS while pg with my son - it's horrible. You can look it up if you want - horrible rash) so I know the drill with the best ways to minimize itching. If the dr wasn't convinced that this could be the bad rash, I'd still be taking the Keppra and doing the itching protocols.

I'm so frustrated with having to have all these specialists and all this crap going on and this doc will only get so many chances, but I'm going to give her more than one. I know how difficult my situation is...I live it. Trying to be a specialist and work with so many things outside your specialty has to suck, but as long as she takes my calls and gets me in right away, then that's half the battle.

[Porkette]

Hi Raigne,

I'm sorry things haven't been going the best for you. Years ago I saw a lot of specialist because my case with epilepsy and how I got it was very rare so Drs. wanted to get in on my case to find out all the details and take it to medical banquets with my okay. It was then that I learned that having to many Drs. involved in my epilepsy is what drove me nuts the one Dr. wanted me to try one drug and another Dr. wanted me to try another drug. It got to the point where I told them to do the DNA test to find what med would work the best for me and that's when they found I was drug resistant to all sz. meds out on the market as of now. After the go around with so many Drs. I told myself to have only one Dr. and one neurosurgeon and since then it's been a lot better and these 2 Drs. work together as a team.
I wish you only the best of luck and I hope that the rash clears up. May God Bless You!
Sue

[Raigne]

OH my gosh, Sue! I can't imagine finding out the seizures are Rx resistant. That just SUCKS. I'm glad you were able to find two doctors to stick with you and manage your health.

I long for that. I had that when we lived in Texas, but since moving to Phoenix it's been a nightmare of dr. after dr. My first primary care dr was AWESOME, but then retired to write crime novels. The guy who took over his practice was HORRIBLE and rude to all. So I left and found a new pcp. He seemed amazingly cool. Too many incidents of his greed and over-medications and then asking for hundreds of dollars to write stuff he was supposed to do anyway ended up with Medicare having SEVEN lawsuits against him and he took off with everyone's medical records.

So my pain clinic recommended a (for lack of a better description) chain of "family medicine" doctors. All over the Phx valley. I never got to see a real dr. only the PAs. And they kept under diagnosing me or misdiagnosing outright. Then I started having kidney problems (I've got a history of kidney stones) and when I went in to do a urinalysis the aides gave me a DIRTY STYROFOAM CUP to put my sample into. I told them that was unacceptable and they managed to dig up something else. After that I went into the room and the PA came in I told him what happened and that due to my history he'd have to send that sample off, not just test in the office. HE RAN out the door for a min. then came back and he said he stopped them before they got rid of it. for 6 weeks in a row, I'd call weekly to see what the results were. I found out that the girls threw that sample away, and nobody ever sent anything off. The following week I was rushed to the ER and went from the ER to emergency surgery because I'd had 2 stuck kidney stones for that past MINIMUM of 6 weeks. My kidney took forever to recover.

I called and talked to the mgr of that particular family practice and she got the head dr and they had a big meeting, blah blah blah. Big apologies all around... I said I'd give them one more chance. When I was in the hospital, they used regular hospital tape on me when setting my dressing for me to go home. I'm SEVERELY allergic (and they know that, too) to that and the rash that hits is fast and spreads everywhere. So I went in to the dr that day, and the rash was from belly button down to mid thigh. The PA gave me a cream to put on it. Um....when a rash is that freaking bad steroids are the only way to stop them. As I was sick, tired and just out of it, I filled the script and went home. Talked to my mom (a former RN) and she told me about needed steroids. I gave the cream two days to make a difference. By the time the rash was down to my knees, my husband drove me to the dr. office - no appt at all - and I DEMANDED to be seen at that minute. Frankly, I caused a scene on purpose (no children there or I wouldn't have done that) so that everyone would know what an idiot that PA was. They took me back and gave me two huge steroid shots. One fast acting, one slow. The rash was half gone by the next morning and all the way gone a day later.

I know this was long and drawn out, but finding a dr. here is a nightmare. The good news is that we're moving out of state soon (West coast here we come! - it was supposed to be New Zealand but now we can't because of my medical problems and the need for a support system to help out) and I can just see the specialists I have and will worry about finding a good primary care doc once we land where ever we're going. Then I will find specialists from there. But at least I'll have one central doctor who will have all the info from all the specialists. I'm sick of being my only advocate - my memory is shoddy these days. My husband does what he can, but the poor guy is in management at work and works long hours and then comes home, cooks dinner, etc. He never complains when I need a few days of rest. Mostly because he knows I'm stubborn and have a desperate need for a clean house. LOL

I am rambling here. Day 2 Depakote. Dope-a-kote. So far so good, but it makes me a little....goofy.

I hope you have a great day, Sue!! Know that I will keep you in my prayers...you've been through so much!

[Msudawg89]

Originally Posted by Porkette

Hi Raigne,

I am so sorry to hear you broke out with a rash from the keppra the same thing happened to me when I was taking lamictal and tegretol. I had to see a Dermatologist (skin specialist) and he did a skin biopsy on me and found out it was the lamictal. The Dr. then gave me a steroid cream to put on my skin to stop the itching and I was told not to itch my skin and when I bathe to use lukewarm water and only dove soap for sensitive skin. Also keep away from any shampoos or soaps that have a strong scent because this will make the rash worse. Be sure to wear loose clothing and stay out of the bright sunshine because the more heat you get the faster the rash will spread. I know it's not easy but try not to itch the rash either because that will also spread the rash. Since you are allergic to keppra don't be surprised if you have the same problems with lamictal and tegretol or trileptal because all of these drugs are very similar and have a lot of the same ingredients/chemicals in them.
I'm glad you aren't taking Neurontin I was on that drug and the drug co. got busted because they found out that Neurontin can cause sz. for people who never even had one. When I was put on the drug it caused me to have absence status sz. where I would be out of it for 30 min. to 3hrs. and it caused more brain damage. Now the drug co. has a @4240 million lawsuit on them. If I were in your place as far as the Dr. getting you off the keppra cold turkey and knowing it can trigger sz. and other medical problems I would turn the Dr. into the Medical conduct board in your state and also make the Dr. liable for any possible medical problems or bills that could come up. Take my word tell the Dr. to do a DNA test on you all they do is take some blood and saliva and match it up to the correct sz. med for you with the least side effect. Don't let the Drs. be making money off of you getting you to try this drug and that drug demand a DNA test to find the correct drug. I wish you the best of luck and May God Bless You!

Sue

I had the same experience. I had a biopsy from a bad rash on my chest. At first they thought it was a sunburn. It was the lamictal. I had taken it almost a year. I didn't know about the DNA test but I am going to look into it.

[Msudawg89]

Originally Posted by Raigne

It was suggested that I start this as a new post so I can get better feedback here on the Epilepsy forum (thanks Doc!)

I've been on Keppra for 9 days. A few days ago I started itching on my lower stomach and my right eye. I thought nothing of the tummy itching. Maybe dry skin (hey, it's Phoenix and dry is a given around here) and the eye was probably allergies.

Today I actually LOOKED at my lower abdomen and there was a rash. A raised, red, bumpy, OMGOSH, rash. And my eye is still driving me nuts. So I looked all over online about Keppra side effects. It said if you get a rash, "no matter how small or mild" to "call your doctor immediately." So I called the dr and was told to quit the Keppra NOW. And that I had to go in to see her on Monday (the PA was the one who called). I said, "I will have seizures all weekend if you take me off the Keppra and I had a grand mal this last time to which you guys said all my seizures will now be grand mal."

The PA said, "Yes, we realize you will have seizures. You'll have to take precautions." I said, "You don't understand. I have a SYRINX in my cervical spinal cord. That's a pocket of brain fluid that has severely damaged my spinal cord. My neck can snap extremely easily. And if I"m flopping around like I did last Saturday - ONE TIME - I'm in danger. I CAN'T go cold turkey." He explained that they have to stop the reaction because it is known to cause a condition where the skin will literally peel away.

The lesser of the two evils is I live with skin peeling away as opposed to dying from a fragile spinal cord. He said he'd call me back and went to talk to the dr. He called back and they called in another anti-seizure med. I couldn't understand what he said because his accent is very, very thick. It began with a B and almost sounded like "bitmap" though I know that's not it.

I also told him this rash is like the rash I get when hospital tape touches my skin. It spreads til we stop it with steroids. Last time I had the rash spread from belly button to knees from having one piece of hospital tape over an incision on my stomach. I ended up getting two big time shots, a topical cream AND a medrol dosepack of prednisone.

I told the PA I happened to have a dose pack of prednisone and asked if I should take it. He said, "Yes of course, take it." He was making decisions on the fly and I finally said, "Look, I have 7 diseases, I take handfuls of medicine each day, you need to be SURE about things - I'm not your normal patient." He said he was sure and that I was to call if there were any problems.

(sigh). Anyone else ever have the rash reaction to seizure meds? I can't take Gapapentin (Neurontin) or anything in that family because of psychosis, and I'm kind of freaking out right now. I HATE that I'm this sick and I can't just be an easy fix. I already figure I'll end up in the ER this weekend...

The drug is Vimpat. Tooooo expensive to stay on and still itching. I have to stop taking the meds for a few days like they wanted me to because the patch of itchy rash isn't going away and my right eye is itching like crazy, too. Ugh. I'm going in on Monday to see what we can do.

It is very tough to find medication that works. Sometimes we must research for ourselves. Try making a list of ingredients in the Kappra.include the inactive ingredients. Then list all your other medications.
I have had reactions to 8 seizure medications. The PA called me back after the last reaction and we stayed on the phone and went over all the ingredients in each medication. I ended up with dialantin 50mg chewable tablets. We figured out the medications had milk and red dye in them.
Maybe you can see the doctor and worst case they could compound a medication specially for you.
I wish you the best of luck.