Misfit Toy
Senior Member
- Messages
- 4,178
- Location
- USA
I wanted to post this. I had said before that Topomax made me a zombie. When I first started, it was kicking my butt and all I wanted to do was sleep. I had to taper back to 12.5 mg. Even on such a small dose, my pain was reduced by 40%. That's huge.
But...alas, other symptoms or side effects came on. I became freezing on it. No matter what I wore, how the heat was at 75 degrees, I was bone cold. I could not warm up. My CFS doc said this was the norm with Topomax. His direct quote, "it can be the devil. It's a great drug, but it's got some negative side effects."
Then, the oversleeping turned to full on insomnia. Going to sleep at 5 to 6 am. What a nightmare. I would get up at 2 pm sometimes, 2:30. This was NOT like me. I normally go to bed between 3 and 3:30 am. I know, some are like...well, that's later, but it makes a huge difference to go to sleep at 5 am. My day would start when everyone else was ready to come home from work. It was messing me up mentally.
I called my rheumatologist. Told him what was going on. Told him I wanted to stop the Plaquenil for Sjogrens. He said, "No, these symptoms are from the Topomax." Stop it. So, I did. I stopped it Sunday.
Now, I can't sleep AT ALL. I sleep 3 hours with the help of Tizanidine. Lovely
I am in so much pain and in full on insomnia mode. This stinks. I can't stand medicine. Every med brings side effects that suck. It helped with pain, it just brought on insomnia and freezing cold and I lost weight on it. 6 pounds and let me tell you...I can't afford to lose weight. I had no appetite on it.
But...now I can't sleep and my pain is through the roof.
So bummed. But, feel the need to give people this info.
But...alas, other symptoms or side effects came on. I became freezing on it. No matter what I wore, how the heat was at 75 degrees, I was bone cold. I could not warm up. My CFS doc said this was the norm with Topomax. His direct quote, "it can be the devil. It's a great drug, but it's got some negative side effects."
Then, the oversleeping turned to full on insomnia. Going to sleep at 5 to 6 am. What a nightmare. I would get up at 2 pm sometimes, 2:30. This was NOT like me. I normally go to bed between 3 and 3:30 am. I know, some are like...well, that's later, but it makes a huge difference to go to sleep at 5 am. My day would start when everyone else was ready to come home from work. It was messing me up mentally.
I called my rheumatologist. Told him what was going on. Told him I wanted to stop the Plaquenil for Sjogrens. He said, "No, these symptoms are from the Topomax." Stop it. So, I did. I stopped it Sunday.
Now, I can't sleep AT ALL. I sleep 3 hours with the help of Tizanidine. Lovely
I am in so much pain and in full on insomnia mode. This stinks. I can't stand medicine. Every med brings side effects that suck. It helped with pain, it just brought on insomnia and freezing cold and I lost weight on it. 6 pounds and let me tell you...I can't afford to lose weight. I had no appetite on it.
But...now I can't sleep and my pain is through the roof.
So bummed. But, feel the need to give people this info.
