Hello! I had my first visit with a neurologist today following continued and worsening of symptoms. I am one year post op from decompression and laminectomy. The NL said he thought I might be experiencing migraines caused by hyper sensitive nerves and brain (vessels, nerves, etc). He also suggested hyper something to do with reaction in my brain. I can't remember exactly what he said. Point is, he said that I should try Topamax to give my brain and nerves time to calm down and get back on track. He also said I need to exercise, but didn't really know how to answer the "Yes, I agree. I've been trying. But what do I do? How? It causes severe dizziness, nausea, pain, weakness, pins and needles, tingling, etc." He also had no answer to what could be causing those and why it's almost solely on my left side and my face. He said try the Topamax and go from there.
Have any of you been on Topamax? Is it a worthy investment of time and money to give it a try? I see my NS on Wednesday for my one year follow up, so I'll obviously run it by him before I fill the Rx :)
Hi Annie! I say try the Topamax. It was a lifesaver for my daughter. She had similar symptoms following her decompression surgery and was put on Topamax and Diamox for 6 months. After a week there was improvement and now she is off all meds and feeling good. Warning: there are side effects like tingling, fatigue and soda tasting really bad. I do believe the Topamax calms the brain down. After all it is used to treat seizures as well as migraines. She never needed more than 25 mg a day. Good luck!
Hi I was also on TOPAMAX until recently and it was $$ thing and I know I will have to get back on them...at first u may feel more loopy, and tired....
I was on a low dose so I did not experience weight loss and I could stand to lose some...so, even with meds we r all different in how they work or do work....but as Joalaxa said, it is worth a try.
TOPAMAX works like a diuretic it helps reduce the excess CSF that can cause pressure....not sure if it is as strong as DIAMOX ....which is used for ICP and reducing CSF pressure, but it does work similar...
SO if u decide to take it keep hydrated with water....
Thank you, Selma! Had my one year follow up with the neurosurgeon today and he said to go ahead with the Topamax (I decided to wait since I knew I would see him today) because it is possible it will help. Thank you for the advice to drink lots of water!! I took my first pill at 8:30 and I'm going to get some more water to drink :)
Oh goodness, more loopy and tired! I already have that. This should be interesting! Hopefully I can finish my classes this semester successfully. I haven't been able to get much done yet lol
I have been on the max dose of Topamax 300 mg since 2006 for complicated Chiari 1. I have been decompressed 2 times 2005 and 2012 with a sling placed in 2012 for brain sag. please give the Topamax a chance. For me it really helps.
Thank you, Selma and Resa! I truly appreciate your responses and experiences. I took my 4th dose today of 25mg. I am surprised to note that there is some improvement in how I am feeling headache wise. I was able to take Tylenol today instead of Advil, which is fantastic.
I hope you are both doing well today and have a very restful Sunday!
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