Medication Questions

[daisy.girl]

I know that meds have probably been discussed here more than anything else, however, I am at a place where I need some counsel!
I am allergic to:
topamax, zonegran, lamictal, keppra, and most recently Depakote.

About 5 years ago I went through the the first 4 meds when I found out I had complex partials.
We ended up finding out I could tolerate: Neurontin and Klonopin

I have been on those two for the last five years. Well after my generalized seizure in the recovery room on May 5th, they gave me IV Depakote, and I was discharged a day later with oral 500mg ER Depakote. The next day I had an allergic reaction.

I kinda refused to try another. {thought everything would go back as it was and this was just a freak seizure after my surgery}

Now, after having an absence or complex last week, I am a bit concerned that the Neurontin and Klonopin are not enough.

 

[masterjen]

I have a couple of thoughts/ideas:
1. Have you tried keeping a seizure trigger diary recently? Maybe you have a new trigger you didn't have before, and that is what triggered the recent seizures. This happened to me about 6 months ago.
2. This idea might have been explored already, but is there a common non-medicinal ingredient in the five you are allergic to? Your pharmacist should be able to help you determine this if you are not able to find out online. Make sure to search for the non-medicinal ingredients using the exact brand or generic name of the medication you have used, as non-medicinal ingredients between brands/generics are not necessarily the same. If it turns out that there are one or two commonalities between those five medications, it might turn out that switching to a different generic (or switching from brand name to a generic or vice versa) to one that does not contain the offending ingredient may solve the problem.

I wouldn't blame you for not wanting to try one of those five again regardless of the brand/generic, but by trying to find common nonmedicinal ingredients among those five, you might be able to determine which other medication (including which brand/generic of that medication) might be safe to try.

I hope things work out for you and you regain better seizure control soon.

 

[daisy.girl]

I never really thought of the inactive ingredients...it has been so many years now, not sure I could find out what they were. But that is a wonderful thought!

Is it possible to just adjust my Neurontin and Klonopin to work for my old seizures and now my new generalized one?

They really never worked well anyhow, as I still had around 2-3 complex partials a week {now I am thinking maybe they are absence seizures instead}

What other {mild, low side effects} meds are left for me to try?

I just have felt so weird, detached....crying at nothing. It is a scary feeling. I want to continue to think that maybe I don't have seizures!!

Thanks for all you help!

 

[Dolores]

If you know the drug and the manufacturer (if a generic) you can look it up on the DailyMed site (Link). They have a lot of information including the label with all the inactive ingredients. You just have to scroll to the bottom of the data about the particular med.

 

[daisy.girl]

I don't know the manufacture of the drugs as it was 5 years ago!

 

[kirsten]

As a layperson (please, not a doctor) Jen's suggestion of trying other generics seems to be a good one. I say that because of the sheer number of meds you are allergic to. To me, the most likely and logical explanation would be that some sort of additive or binder might be causing the allergic reaction, rather than the active ingredient in the medication itself. Obviously, a doctor and pharmacist are the first two people on the list who can help you to look at all the meds causing the problem and identify whether they have an ingredient in common. Maybe you'd have luck taking a liquid or injected form of the medications to avoid potential allergens?

 

[Belinda5000]

I'm allergic to Depakote,Keppra,Lamictal,Vimpat

I'm med resistant to all the meds in tegretol family except the original tegretol.

I've tried 23 meds,I've had brain surgery and I got a VNS in 2001 had the battery replaced 3 times before I decided I wouldn't go throug another surgery.

Klonopin,Topamax,Tegretol were only drugs that worked contol my sz's decently.Neuronotin made me suicidal.

 

[daisy.girl]

Belinda,
what anti seizure meds do you take

 

[valeriedl]

A few years ago I was getting steroid injections in my back for problems I was having. I was having a ton of seizures while I was getting them. After about two months I stopped getting the injections because they weren't helping. When I stopped getting the injections my seizures went back to normal, still having them but not like I was when I was getting the injections. That's when we put two and two together that it was the steroids that were causing the seizures.

Last summer I had severe poison ivy on my hands. It was so bad that I was scratching them and making them bleed. I went to the dr and he told me that I had two options. He could give me a cream but it could take up to six weeks before the poison ivy went completely away or I could take a weeks long of steroid pills and the poison ivy would be gone in a week.

I really didn't want to take the pills but I figured that I'd rather have some seizures for a week instead of keep scratching the skin off of my hands. While taking the pills I didn't have a single seizure.

I think it was a difference between the liquid version and the pill version of the steroids that were causing the seizures.

 

[Belinda5000]

daisy
I take tegretol 300MG 3x day Topamax 200MG 2xday and phenobarb3 30MG pills at bedtime.