I’ve been off of Topamax for about 11 days now and all I can say is, my world is back to normal. In the past, I found that Topamax was a good solution for my cluster headaches but not so much recently. I’ve been chronic since summer of 2010 having at least one major headache every day, totaling over 300 since I’ve been keeping better track in November of 2010. I did have the “Dopamax” effect where I couldn’t find words for everything immediately, but it was such a gradual process that I forgot what it was like to be normal.
My neurologist and I have decided to stop Topamax because I have been having vision issues, like the last time I was on it. Waking up in the morning I would get ghosting of images and my eyes in general would hurt all day long. This probably is related to the possible side effect of closed angle glaucoma that Topamax can induce. I had my eye pressures checked a while back and they were fine – but I didn’t again after increasing to 200mg/day.
The other thing I hadn’t realized is that Topamax seems to have been affecting my ability to develop software. You’re reading that right – it prevented me from finding the right CODE TO TYPE. I thought it was concentration issues or just the headaches in general but I think it has to do more with word association and the ability to think ahead of the code before programming it. Even a few days after being off of the Topamax I could tell something had changed and I was back to my previous performance levels of slinging out code and finding solutions to problems. I’d almost say that I’d rather deal with the cluster headaches than not have the ability to be a software engineer.
Anyone else have this type of experience?
The past eight months have not been good and it is why I’ve decided to come back to blogging. Since last summer my headaches have come back with a vengeance and I’m in pain every single day without fail. Here’s me in a few short sentences.
- I have cluster headaches, not simply migraines. This fact has been made very clear to me and I’m finally listening to my neurologist this cycle.
- I’m keeping a very good migraine diary. My iPhone app sucks and I need to rewrite it to be more suitable for all experiences.
- My medication trials were not good enough in the past and I’m re-trialing Topamax, zonisamide and melatonin. I’m even going today to discuss testosterone therapy with my neurologist – something I’ve discovered through NIH research.
- I’m having 3-5 headaches a day, all on my left side. My nose drains, eye typically waters. They last from 5 minutes to 15 minutes to 30 minutes. Some last hours. If I do not medicate they can go away on their own. Typically I have to medicate with an NSAID like Tylenol or Alleve. I am taking way too many NSAIDs.
- In the last three months I’ve documented 235 headaches.
I plan on giving a better catch up soon. I wanted to post something to get the ball rolling.
So I’m now back at the point that I believe I will be visiting my neurologist and get put back on an antiseizure medication. The frequency of my migraines is now at least 5 a week that require medication. The other day I had a really strong attack of nausea and couldn’t attribute it to anything except a possible aura of sorts – so I took some NSAIDs and it eventually went away. I’m contemplating Topamax again, simply because it worked, and because I see it now has a generic out there. I need to call my insurance company to see if they cover it since their super duper website says it’s rejected and I’m supposed to have coverage on essentially all generics.
Down side is the “dope-a-max” effect that comes with the medication. I also get tunnel vision episodes with the medication which is unnerving but tolerable. Since I was a little child I’d get these tunnel vision episodes maybe 2-3 times a year at the most and usually only during falling asleep and as an adult sometimes when drinking alcohol. This medication triggers is every day nearly and it honestly had my neurologist baffled.