New to Epilepsy, new to Topamax

[jonw]

Hello all,

I was recently diagnosed with simple partial seizures and started taking Topamax 2 weeks ago. I started on 25mg a night for the first week and am now starting 50mg a night, eventually working up to 100mg a night.

The first week I felt really spacy and out of it, somewhat disconnected. Then by the 7th day I felt really good! I started the 50mg a night regimen and it all started again along with a bad migraine the other night.

But the strangest thing happened last night. I took my pills and went to bed. Not sure if I was half asleep or what, but I had the weirdest sensation that I was flying head first down a mountain or something and my legs were twitching like crazy! Finally woke up and was totally out of breath. My wife woke up and said I was moaning and jerking. So, apparently vivid dreams can occur on this stuff!

Anyway, just sharing. Seems like this is going to be a long strange trip for awhile...

[Nakamova]

Transitioning with meds can produce some strong side effects as the body adjusts to each ramp up or down in dose. You may find that things settle down once you've been at a stable dose for awhile. Just to be on the safe side, keep a record of any side effects or symptoms, and when they occur -- it's possible that the twitchings were seizure-related rather than nightmares.

[jonw]

Hello, been awhile since responding. I am now been on 100mg. dose of Topamax and have been for a couple of months now. I still experience partial seizures now and then but not as often. The weird thing is still the dream state seizures or whatever they are.
Last night was a dream of being too close to power lines and feeling an electric shock throughout my body. Could also hear a loud screech in my head. Woke out of breath. Strange.

[greggipod]

Hi there!

I am also on Topamax, and wanted to share my experience. I hope it doesn't come across as being overtly negative--everyone experiences these drugs differently--but my neurologist explained to me that it does have a unique side effect profile--including the ever-present "pins and needles" in the hands and feet. I also have the twitching issue, mostly at night, but my neurologist doesn't seem to think it's seizure related. My twitching is concentrated in my hands and are accompanied with debilitating hand, muscle and leg cramps. My hands seem to tighten into a ball and my fingers twitch independently of one another. This also takes a toll on my sleep, which worries me that I will become sleep deprived and have a seizure. On the positive side--I have been seizure free since late September!

Take good care!
Greg

[jewelryguy]

i also take topamax, have for about 5 years. i take it mainly for the migraines, its seems to be a good drug though.

[suebear]

Thought I would give a chime and share my own thoughts regarding Topamax. I'm actually taking the generic but it's the same thing. At any rate, I was taking Topamax at a higher dosage for many years; this is along with other medication mind you.

As of about six months ago, the Topomax was decreased to a lower amount. The reasons for this was because I actually have two internal devices that are being used to help control my seizures because of type and due where they are located in my brain.

I have migraines too but I haven't noticed a lot of help with Topomax lowering that problem... anyway. What I did notice while on the higher amount of this drug is it really did play with my memory which is something I did not care for. As the medication got decreased, I felt better and could think more clearly.

I agree with the comment that was stated earlier, everyone reacts differently to medication because each person has a specific make up in their body chemistry. What I could suggest if you haven't done it already is to keep track of those odd feelings as they occur (date, time, etc) and make notes in a log. Before you go into see your doctor, print out the log and take it in with you so he or she can see the changes.

I keep a log that has all of my seizure activity along with migraine activity or any other activity taking place. It just helps me track things out and take it into the neurologist when I see him.

[djimbeau]

i think you have sleep apnea bro... waking up out of breath and sezuires, do you ever have night sweats or slightly high blood pressure ? i get the same exact sensation and im not on topomax im on dilantin and i been on it for long enough to know how it makes me feel. but if you still have sezuires on topomax id switch to something def.reliable and try to find what causes youre sezuires rather then just feed yourself meds. my doctors wouldnt even try to figure out the cause for me they just always say its unexplaineble or it could be several things but i have youre symptoms and my sezuires are from sleep apnea. ask youre wife if you ever stop breathing while you snore even just for a second it accumulates everytime you stop and try sleeping on youre side or stomach and see if it doesnt help over time, ......i been on meds for over ten years and i get those same sensations when im off of meds just cant explain them as good as you