Neurontin & Topiramate

Hi all, new here and just a bit of history. I am a 68 year old male with severe MAV 6+ years and just recently diagnosed properly. I have been on 300 mg Neurotin (gabapentin) for several years for another problem and after my diagnosis was put on 50 mg topiramate. Before the Topiramate I was a basket case, cane and walker, praying not to wake up in the morning. Almost three months into the topiramate I am 90% normal and able to function at a normal level. The side affects are there, some foods taste a bit off, some light cognitive impairment, some additional neuropathy and there seems to be an increase of the neurontin side affect of a sore mouth. Even with all the side affects I am so much better that it is like a miracle, I have my life back. I will admit that it took several weeks for the topiramate to have the desired affect and my neurologist said I will have to increase to 75 mg in December which concerns me. I also continue to have the silent migraines but I am learning to recognize them, the Dr. gave me some non-narcotic meds to take that really work.

After being seasick for 6 years a few side affects are nothing and I am assured they will diminish or go away in time. I have a friend that quit after just 2 weeks and continues along the sad crooked path, I can only pray he finds something that works but he finds fault with every med he tries.

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Hi Kenny
Thanks for your input. Topamax has a bit of a stigma for a lot of side effects, but I can definitely see where it was a trade well worth making for you. I’m so happy to hear you are finding good quality of life
again.
Might I ask if you were having headaches? Was it mostly the disequalibrium that was so disruptive?
How did you titrate up on the Topamax? There are others here who have really been helped, but like you said, it took some time.
Also, what affect did the Neurontin have? 300 mg is a very low dose, as some go up to 3600 in split doses.
Thanks, and glad you shared!
Kelley

Kelley,

I do have headaches but they are really weird, mimicking stroke when severe and causing a lot of strange aura; smell, taste, numbness etc… There is little pain and it is hard for me to recognize them as headaches, my wife helps me a lot in recognizing when I am having one of these migraines. The after affect of the headache is the disequilibrium which mostly lasts from one headache to another so that I was almost always seasick. Sad it took me so long to find a Dr. that recognized my symptoms and knew what to do to help me, 6 years is a long time to suffer with this kind of thing. To be honest I am still not well but I am a whole lot better and I praise God that I am where I am.

As for the neurotin. That is a 20 year story. I was diagnosed with restless leg syndrome 20 years ago and had been suffering with leg restlessness since my youth. I have been off and on every drug used for that syndrome several times and was no longer getting relief. As I grew older I was diagnosed with moderate to severe neuropathy and neurotin was prescribed, wonder of wonders, all my leg pain went away and stayed away even after I quit a the RLS drug. It’s been 3 years now and there has never been a need to increase the dose. The only persistent side affect I have is a sore mouth which is not unheard of but does go away in time for most folks. I also understand that as you increase the dosage the less effective the drug is so that sometimes huge doses have to be taken to provide the needed therapy.

I started with 25mg Topiramate at 10pm for 30 days and increased to 50mg at 10pm. My neurologist plans on increasing me to 75 mg with 25mg in am and 50 in pm in December. I have mixed feelings about that but there is some time to see how things are going. I do know that the usual dose for folks with MAV is 100mg. I have a friend with seizures and she was on a much larger dose of topiramate and could not tolerate it, told me it put her in outer space.

Hope this answers all your questions. Best to you Kelley.

Thanks Kenny, I appreciate that info.
I would only say go up on the Topamax if you’re unsatisfied with your current status. For a lot of people, they have to find that sweet spot…with the Topamax, as you know, the adjustments can take a really long time to kick in. SOme on this
site had to start at 6.5 mg and go weeks to get to 25mg. You are lucky that your body adjusted fairly quickly. A very specialized neurologist who does a lot of MAV patients says between 50 and 100 for Topamax. You are right in the zone.
Sorry to hear it took 6 years…that is certainly a bummer, but better late than never.
Keep us posted!
Kelley