1) I'm new to Topamax — about 3-4months now and I take 150mg total a day. As my dose has increased, I deal with paresthesia, which is the numbness and tingling in my hands and feet. It's quite painful and annoying. But the Topamx really helps me maintain my TN without having to increase my Tegretol. My neurologist suggested drinking gatorade? Anyone else deal with this?
2) I don't think this is a drug side effect, I think it's just part of TN, dealing with nerve stuff — my left eye (I deal with TN on my left side) waters, tears, bothers my like that almost daily. I think it's because it's the middle of winter now, it's cold, it's very dry where I am but it's quite annoying!! Any suggestions? I only wear my glasses and I hardly ever wear make up. Does anyone else deal with? Do eye drop help? Lubricating the eye more? It almost feels like an allergy.
I now take 150 mg. of Topomax. I have the eye problems you mentioned, but they are not due to Topomax--at least mine are not. For the eyes, the eye doctor has me use over the counter bion tears and when they are really bad, I use genteal gel. As far as the tingling, I was actually given the topomax originally to help that. I had neuropathy from chemo and I could not tolerate neurontin nor lyrica, so I was given topomax which really helped me with that. Check with your pharmacist to see if he/she thinks the topomax could be causing this. I have found the pharmacists give me more answers than my doctors.
I do have empathy for you. All of this can be such a PAIN!
Hi Jessica,
Numbness and tingling in hands and feet can be a side effect of taking Topomax. I have parathesia on my right side, due to another condition I have. Topomax did not help my TN pain at all, and did increase the tingling . I found that Gabapentin worked to some degree on the TN pain, and also helped with the parathesia.
I also had my eyes tear ( I have bilateral ATN). I did see an opthomalogist, who diagnosed me with dry eyes, and suggested artificial tears. I always though it was TN related, and since I have had MVD , the tearing has pretty much stopped.
Best of luck to you, and Happy New Year!
I took Topamax for 2years...was actually up to 600mg a day! It was the ONLY med that I was able to take to control my TN prior to my MVD. I did have some tingling in my hands and feet, but not too bothersome. I thank goodness that this drug was out there for me. I actually continue to take 100mg a day because weeks after my MVD, I ended up with symptoms of AD. My symptoms are now tingling and numbness on my face, along with a cold tugging feeling. It seems to help somewhat. I would say the negative side affect of taking Topamax that I have encountered is hair loss. This has gotten better as I have lowered the dosage, but not gone away completely. Good Luck to you!
I had my MVD 17 months ago and the surgery was 90% successful -- however I woke up with the headache from hell. I have suffered with the headache and been on more drugs that I care to think about. I have been on 100 mgs of Topamax with great success along with one series of Botox injections which took 7 weeks to work. I had several other issues from the surgery, but the TN is 90% gone and I am dealing with the residual effects of everything now. When they attempted to increase the Topamax I did not do well at all and begged my neurologist to bring it back down to 100 mgs. because the pain management doctor had me on Neucenta -- which I took myself off of 2 months ago. The only thing I take now is the Topamax and will do another series of Botox injections on the 17th of January and every 3 months after that. Right now - I believe I am getting my life back. So, look out world - here I come! Best of luck to you my dear.
Thanks all — so very interesting how different each of is (but how frustrating too!). I think my hands hurt more with temperature change, or at least I feel more affected by my hands getting hot from a shower or doing dishes or going out in the cold without gloves. I noticed this causes the tingling the come on strong. I've been trying to wear gloves anytime I go outside.
With my eyes — I've been trying to be really good about using drops. If my eye starts to go, I've been trying to stay on top of it with drops. I feel like that is helping.
I'm a freelance graphic designer so I've got 2 things that aren't great — using my hands + my eyes staring at my computer all day. SO I try to do a good job of taking care of myself and sleep a lot, and getting good sleep.
Thanks everyone. Your kind words are so appreciated. Cheers, Jessica
I have been transitioning to Topomax for only 1 week now and the pins and needles are getting to be too much. It is waking me every night after only 3-4 hours sleep and I lay there for hours hurting. My neuro was switching me from Gabapentin because of the weight gain but I think I would rather be fat and semi rested. I have read that the pins and needles are a side effect of Topomax.
I have been on Topamax for over 2 years now. I been on as much as 600mg prior to my MVD and now down to 200mg to deal with some neuropathy left from nerve damage as a result of the surgery. When I was first placed on this med, I too had the pins and needles feeling in both my feet and hands. It was not enough to wake me at night, but I do want to say that after a few weeks it did lesson. Maybe you should have given it a chance to do this. Many meds have side affects that are worse at the beginning, however after a short time lesson. Our bodies just need some time to get used to them, and many times they do just that. Topamax really has been the answer for me since I am allergic to many of the other go to drugs for TN. I have been very lucky that this drug is out there! Good luck with whatever you decide to do!