Neurologist put me on high dose of Topomax? Side effects are insane. Does anyone have any experience with this drug? Neurosurgeon said surgery when I am ready.
Yes I have been on this drug for 4 weeks the first few weeks are insane I felt like a was nothing I have ever felt before I was either on the floor in a vegetable state or sniffing everything I passed… I promise you it gets better keep at it my neuro tried to tell me that side effects on that drug is rare I lol’d after reading so many forums of people’s side effects. Thankfully many people did rave about the drug once it settles into the body. One thing I would say is sometimes it will make u forget to eat and then feel absolutely starving so becareful how you eat x good luck x
Yes I was on it for a long period of time almost 9 months, they say it make you loose weight!! I was all for that but they never told me what other side effects, it did help my headaches but…it also made me “STUPID, UNABLE TO MAKE DESIONS AND EXSTEMLY FORGETFUL EVEN MY SPEAXH WAS SLURR” it was so bad I would get to the point I did not trust myself at all , even my husband who has been my life line thru all this , he got to the point that he told me we could not have an adult conversation because there where times I didn’t make sense…Just a week after I stopped it I noticed I was able to talk like a normal person,when I was on the Topamaz, there were times I knew what I wanted to say but the words did not come out of my mouth!!! It was horrible, I was very upset with the doctor that put me on this, thankful it helped the headaches,put there are other meds that are as much effected with out all the side effects…and by the way I never lost a single pound on it, and people that I spoke to that have lost lots of weight, up to 30lbs, but it all comes back fast once you stop the med…
I was on 200 mg of Topamax and I thought i was going to go crazy. It felt like I was on some kind of crack or something. It didn't help with the headaches at all. I finally made it to the NS and he told me Surgery when I was ready. I had Surgery 2 and 1/2 months ago (full decompression). I woke up in recovery feeling like a new person. I've only had a couple of headaches since but they are nothing like before. I can regular OTC meds and they work now.
Thank you everyone! I am on 100 mg and they want me on it for 3 months before we throw in the towel. My biggest complaint all along has been SEVERE head and neck pain. I have had fewer episodes but when I get them, they are still as severe and I am still getting them. The major tingling in my fingers, hands, arms and feet has been a part of my life for so long it is just much worse on this medication - the worst part is, like Nella said, I feel stupid. I was having trouble finishing sentences before, now its really bad. I had nerve testing a few weeks ago and I told my Neurologist all of this and she told me to stay on the meds - don't quit. Work through the side effects if I can stand it. Trying to talk to my friends and family over the weekend I cant remember the name of the street I live on - it is starting to get embarrassing!
My Neurosurgeon (Barnes Hospital in St Louis) is amazing - explained everything - I was crying the entire appointment and felt like a lunatic saying how I felt out loud - but he understood! didn't think I was crazy. Asked me to keep a diary of my triggers, keep track of my life until summer and if I decide I cannot stand it - surgery MAY fix 75% of what I am dealing with. No promises.
My neurologist took me off topomax and said that it can cause a decrease in spinal fluid which in chiari patients is not good. She made me stop it
Ive been on Topamax just over a week now and let me tell you,uh wait where am I lol this is THE most bizarre drug ive ever taken.I don't know weather to laugh or cry or just sit here and drool,I think its helping with the pain but I cant feel my body ya this is some weird trippy stuff Ill let you know after I go sleepfor another 8 hrs if its working. lol
I hate Chiari today !!!
xoxo
Dingaling
Ok today I felt like a drooling ST Bernard.I couldn't talk,I was paranoid and I ate froot loops and a twinkie for dinner.This drug seems like a brownie I ate at a party years ago and I was stoned for 3 days lol but it is making the pain seem like its there but im so stoned I cant remember or im to busy looking for some munchies I forget haha Im going to gain weight not loose weight lol leave it to me to me to be the weirdo I guess if you like the effects of pot you will LOVE this drug hahahahaha Im looking for my Cheech and Chong album...................