Topomax for Migraines

[bean418]

Does anyone have experience with using Topomax for Migraines.  I have had migraines for the last 3 years and have been rx Topomax.  I tried it for a week and felt fatigued, more and worse migraines, spacey so I discontinued it.  Tried again and after a few days landed in ER with vertigo. Dr. believes we should try again that it will be helpful after titering upwards.  

Wondering who has experience with side effects, what they were and if they waited it out did they get better or worse.

Thank you.

[light00]

Doc/neuro/chiro r still in dark for cause of sudden onset of headaches 2 months ago. neuro prescribed Topomax. read ur comment. thank u.glad I didn't take it. light00

[Lperez4484]

I was rx Topamax a lil over a year ago, did the same n my Head Aches got worse. I stopped taking it, if u read on it its used for Seizures... personally I wouldn't go back to using it.. I now take Naproxen n they work  

[sara12345]

Try the Topomax. It does help many people with their headaches, but does not help everyone.  There are other daily preventative headache meds that you should try if the Topomax doesn't work.  If none of the preventative meds work, then if your headaches are at least 15 days a month, then you have a very chance of Botox injections helping you.  That's what made a major difference in my daily migraines.  None of the preventative meds either worked for me or I had bad side effects from them.  

So then my neurologist told me about Petadolex which their studies show a 71% reduction in migraines.  You can find it on-line. And it is toxin-free having been evaluated by the German government.  Our herbals do have a lot of toxins because they are not evaluated by the FDA.  When I tried getting off of them over about 3-4 weeks along with not taking my COQ10 and Magnesium, I had the very worst migraine ever.  This time at the ER, nothing helped me.  I had a severe, vomiting migraine for 60 hours straight.  Then the only thing that helped me was sleeping.  

So I went back on all three and since then my headaches have been mostly mild which is a major accomplishment for me since they were 24/7 severe since a major stroke.  I also get some other treatments and meds.

[msteechur]

I have had a headache since Jan 18 2012 when I had a subarachnoid hemorrhage and have been on Topirimate twice. It didn't help before, so it was replaced with Amitriptyline. Now I'm back on it with Gabapentin. In the case before my neurolgist was going through protocols used with migraneurs, which I am not one. My headache is constant, on both sides, and does have certain triggers which cause it to spike (changes in weather) but so far nothing that relieves it for any period of time that is of consequence. Ice helps for a few minutes, Vicodin used to help take the edge off or push the spike back only if I took it when I could tell it was spiking up but it wouldn't last more than an hour.

Anyhow...now I'm with a new neuro at the UW and she's taking a holistic approach with exercise, relaxation, medication, supplements, healthy eating, daily exposure to the outdoors, healthy sleep, and prevention. I appreciate that. So this is why I'm back ON Topamax.She is putting me on a combination of medications with a specific purpose. She asked me to buy a book that explains how each medication works on specific pain channels on the pain receptors and explained what we're trying to do with what we're using now; settle down the hyperactive receptors to get to another point where we can use a medication that works with chronic pain conditions. At this point, there is still damage to the brain (which amazes me, I figured it would be long gone by now since the bleed was small). The nerves are still hyper-active, too much for the other treatments to be effective. So there is a plan.

My point is that I truly believe that you need to ask your doctor for reasons why you are being put on a medication and what the long term treatment plan is. If you feel like you are going nowhere, ask your regular doctor for a referral elsewehre. Don't stop taking medication because you don't like to take it. I don't either! But right now, with supplements, I take 12 pills in the morning and 9 at night! Now I've always taken some of them (glucosamine because I'm a runner, which is a blessing since I DID have a stroke) and daily multi, calcium, and Omega 3.

I wanted to go do a the UW because it is a teaching and research hospital so I knew they'd be looking at my situation in a different way and would have newer research at hand. I am very hopeful with them and feel like they listen to me and communicate clearly in a very give and take manner. I have had doctors in the past say "I don't know why you have headaches. They should be gone by now." or "You  can't still be having them." and "It's because you're running so much. You're too old to run anyhow, stop running and it will all go away." (This despite the fact that prior to my SAH I had never had headaches and had been running for years, and I am not too old to do anything except ride the kiddie rides at the fair. I am only 48!)

[bean418]

Thanks.  That is great information.  I hate taking medications for any reason.

[Eddie1994]

ID'ing your trigger(s) will be most important in finding something most helpful for you.  The evidence for Topamax seems to be more consensus rather then evidence based - it's because migraine pain and its triggers are so elusive and broad-based.  My wife has taken between 25 and 200 mg for more then ten years and the it's not clear it's helping.  What has worked for her if taken quickly is Maxalt (MLT version) but that may not be a solution for someone else.

If you wish to avoid medications altogether or as an adjunct you may want to consider finding a Psychology PhD offering EEG based Neurofeedback.  This type of treatment recognizes some migraines as an electrical imbalance (as opposed to a electrolyte which implies a bio-chemical imbalance).  This argument makes sense when considering that the brain and central nervous system function because of an electrical charge.  Sounds strange but this is a well rooted biological fact.  So if a non-pharmaceutical option is something you'd like to try then search the following ISNR Neurofeedback.  

In any case keep working with your Doctor and do ask questions.