The Orthostatic Tremor Forum (archive)

Hello all,

I haven't posted in quite a long while; but was checking today and found a post by someone who was going to try TOPOMAX!

I was not signed on; did so and when I tried to find the posting again, regarding Topomax so I could respond, I couldn't find it. If the person who was interested in trying it, please check it out thoroughly BEFORE taking it. If you have any questions for me, please ask.

My neurologist put me on it and I had SEVERE reactions to it. However; I must say, I am very sensitive to the meds most of you are able to take with no problems. But this had the MOST severe side effects for me.

After taking it for just a few days, I became anorexic and was beginning to become depressed. I was not thinking clearly, but did call the doctor's office, left a message of what was happening to me and asked for a call back from the doctor.

I received no call; my initial instructions were after a week I was to increase the medication to two a day; which I did. Had my mind been clear, I would have called the doctor again and would not have increased the dosage.

After two weeks, I went back to the doctor ~ appointment for followup ~ having lost almost 14 pounds in two weeks. When the nurse came in to do the paperwork; I asked if there was any note from me regarding the problems I was having on the Topomax.

She told me, "Yes, there is a note you called, the doctor noted to call you and have you discontinue the medication immediately". I NEVER received a call from his office and told her so.

When the doctor came in, I also had the same conversation with him. He apologized for the breakdown in communication ~ which didn't help me at that point. I was told I could not stop taking Topomax immediately, I had to 'back off' ~ which took me another two weeks.

It took over three months for it to totally get out of my system; for me to regain my appetite and weight and the depression to go away. Needless to say, I did not go back to him!

It was a very unpleasant experience for me, so please, check it out and be aware of any side effects.

Betty in Florida

HI BETTY,
HOW HAVE YOU BEEN DOING?
MY DR. GAVE ME A PRESCRIPTION FOR THIS DRUG BUT I DID NOT FILL IT.
I TOO HAD NOT HEARD GOOD THINGS ABOUT IT.
HARD TO KNOW WHAT TO BE DOING SOMETIMES.
ARE YOU ON ANY MEDS NOw?

Hi Candyse,

Sorry to take so long to get back to you; I don't know where the time goes!

You were wise to check on Topomax, I didn't and had severe side effects; but that is in the past.

As for how I am doing; I have good and bad days as we all do. Walking has even become difficlt for me and that is the one thing most find improves their ability to move about. That is not the case with me.

I am taking Klonopin again, 2 mgs. twice daily. I am supposed to increase it and add another tablet during the day; but haven't done that yet.

I do know, as Gloria has said, while taking any of these medications, one must try to spread them out and take them at the proper times during the day in order to try to keep some sort of level in ones' system. But I must stay busy and keep my mind busy and active or I sometimes get sleepy. The secret is to stay as busy as possible.

However, my energy level is very low and I have very little stamina; but I still try to do the things I have always done; at least most of them. We all try to learn new and different ways of coping; that't what I try to do.

How are you doing? Are you taking any meds now? If so, what are you taking? Can you see any difference in your tremors?

We must all try to keep a positive attitude, hope we will find something to help and continue to help one another.

Betty in Florida