Issues with side effects from Topamax

[Garbo]

My epileptologist increased my Topamax to 300 mg (I also take Keppra) and I have been having side effects from it-- nausea, vomitting, GI problems, and because of those, headaches. They tend to fluctuate so the nausea is pretty consistent, but the other ones are not (the headaches are not).

I've been on Topamax for three years and I've been on this dosage for four weeks (I've had the side effects for about a week now). I've been able to keep down yogurt, kefir, soup, bread, and then to keep hydrated I drink Powerade, peppermint tea, and water. When the side effects were the most intense I drank Ensure.

Initially I didn't think it was the Topamax, but my doctor sent me to the hospital to stop the vomiting and everyone thought it was the Topamax. When I was first on the Topamax years ago I had similar side effects, but I thought (perhaps ignorantly) that a dosage change wouldn't cause this much of a problem. Does anyone have any advice? I just feel very drained (I've been sleeping about three-five hours a day, plus nine-twelve hours a night), sick all of the time, etc.

Also, my doctor wants to get me off of the Keppra and I've been looking at Tegretol. Does anyone have any experience with this drug? We don't know when we can do the drug swap because of grad school.

 

[Nakamova]

Hi Garbo --

I haven't tried either med, so can't help in terms of the particular side effects. Nausea and other side effects are mentioned as Topamax issues at the askapatient site: http://www.askapatient.com/viewrating.asp?drug=20505&name=TOPAMAX&PerPage=60&sort=timelength&order=0

Dosage changes can be tough on the brain, and it sometimes takes a few weeks before things stabilize and side effects lessen. That may be the case with you, but if the GI stuff persists and/or becomes intolerable, definitely let your neuro know.

The links below will take you to threads that discuss Topamax and also Tegretol:
http://www.coping-with-epilepsy.com/forums/tags/topamax.html
http://www.coping-with-epilepsy.com/forums/tags/tegretol.html

 

[lindsayschu2]

I was on Tegretol for a long time (17 years). A lot of people talk about side effects with Tegretol but I never really noticed any here. I had a LOT more with Topamax. Good luck!

 

[Topcat]

I hated Topamax. Be firm ask WHY you are going off of Keppra and on to more Topamax.

 

[Garbo]

My epileptologist and I have a great working relationship so I am comfortable telling him what I like and don't like.

Topamax does work as far as controlling my seizures, but to answer Topcat's question the Keppra does not seem to work (I have been on both drugs for over three years). The issue is that I am a PhD student so I cannot just switch medications because I literally have a sixty-hour work week.

Also, thanks lindsaychu2 for your input! I have heard that Tegretol has a lot of side effects, but it's good to know someone did not have any issues. Similarly, I have had no side effects from the Keppra to the point of it not controlling my seizures.

Thanks for the input!

 

[kirsten]

One of the reasons topomax causes nausea is because it makes your body too acidic. If that is the reason for your nausea, there is a very easy solution that you have to be very careful about. I had the same problem, and I took Nexium every day for 10 days. The nausea went away and then I would just go back onto the Nexium again for a few days. The trouble with it is that if you take it too close to your anti-convulsants it can make them less effective, so you have to be precise about taking it two hours before and after your other meds. Ask your neuro if he thinks that might be worth thinking about.

 

[Garbo]

I received a call yesterday that my blood work came back and there are some issues with it so I am going in this week.

Thanks again for all of the info! I will definitely ask about the Nexium.

 

[lindsayschu2]

Garbo what were the issues with your bloodwork if you don't mind my asking?

 

[Garbo]

Garbo what were the issues with your bloodwork if you don't mind my asking?

Certainly! Just from what the PA told me over the phone (and she did not have the blood work in front of her), I have a calcium deficiency, potassium deficiency, little to no protein (I was a bit baffled by her wording), high chloride, a B12 deficiency, and something else that I cannot remember. She said there was other stuff, but she did not have the complete list in front of her.

What bothers me is that I take B12 in liquid and pill form, folic acid, vitamin D, Biotin, a complete multi-vitamin from Whole Foods, plus I eat a very healthy diet that's rich in protein (I eat a lot of almonds, peanuts, Greek yogurt, fish, green veggies like kale, etc.). But knowing what my body is deficient in explains why I feel like I have the flu.

I go in two days this week to get more work done, a doctor's appointment, and then to start treatment.

 

[lindsayschu2]

Garbo, please keep us informed--I'm very interested in what you learn. I am also on Topamax, 200 mg a day, and Keppra, 1000 a day, and firmly believe I have continued issues with potassium deficiency and at times B12 deficiency ever since I started Topamax. They don't exactly draw blood weekly (my last neuro tested only yearly, or every 6 months at absolute best), so I'd very much be interested in what you hear regarding the explanation for these deficiencies despite your diet and supplements. Good luck with your appointment, and I hope you are able to get these issues sorted quickly!!

 

[Garbo]

Follow-up: I saw my regular doctor today (not my neurologist) and I have very mild toxicity. Go figure! My neurologist scheduled me for Monday, however, I am going to be out of town so he's trying to get me in sooner. Since he did not get me today, I don't think it's that imperative. My doctor put me on steroids to help me feel better. I'm drinking two things of Ensure High Protein a day and the follow up blood work from today showed that some things were much better (my liver enzymes are still below normal, my chloride is still high, and some other things like protein are still borderline). She said until I get off the Topamax or it is lowered I'm going to feel pretty crappy.

I should note that I am very sensitive to medications because I am pretty certain going toxic on Topamax is rare. And again, it's not bad. When I went toxic on Dilantin, I went into cardiac arrest and was in the hospital for quite some time. I just feel like I am sick.

 

[Nakamova]

Doesn't sound fun. I hope you can get a healthy dosage sorted out soon.

 

[Belinda5000]

I've been on Topamax for years and it works for me. I take 400MG a day.It's one of the few drugs that control my seizures.

I've been taking Tegretol since it came out in1975.It's one of the few that help with my seizures.