Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 07-31-2015, 11:57 AM #1
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Default Topamax

Today, I was prescribed 50 mg Topamax for OCD and to help with sleep. It would be to replace Gabapentin as Ive felt increased fatigue from this drug however it has helped with sleep. Anyone have any experience with this medication? I was told that it is often used for Post-Concussion Syndrome and headaches.

I am hesitant to try any new medications due to my increased visual symptoms from the recent short term Prozac but I wanted to ask the forum for personal knowledge, experience, and advice.
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Old 07-31-2015, 03:54 PM #2
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I took this for a couple of years to help with headaches. It did a great job without the side effects that I had on Elavil. One kind of weird side effect is tingly fingers, but if you stay well-hydrated it's usually not that bad.
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mTBI and PCS after sledding accident 1-17-2011

Was experiencing:
Persistent headaches, fatigue, slowed cognitive functions, depression
Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload
Sciatica/piriformis syndrome with numbness & loss of reflex


Largely recovered after participating in Nedley Depression Recovery Program March 2012:

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Eowyn Rides Again: My Journey Back from Concussion

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Old 07-31-2015, 04:02 PM #3
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I have seen a bunch of posts in the past that mentioned people having good experiences with Topamax. It's actually one of the drugs I wanna ask my headache specialist (once I find one in my area..) about.
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March 2009: Concussion from a tree branch falling on head, all symptoms cleared up by 8-month mark. Started having head and hand tremors in 2013, which may had been caused by this concussion.

February 2015: Slammed head into a heavy dining table light, another concussion.

Current symptoms: Constant headaches that are mostly localized to the right side, head pressure, head sensitivity, moderate fatigue, fractured sleep, anxiety, mood swings, tremors, mild dizziness caused by head movement at times, neck pain, fullness in right ear, mild blurry vision

Symptoms that went away: Light/noise sensitivity, nausea, severe fatigue, moderate blurry vision, tinnitus

Current meds: Tramadol
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Old 07-31-2015, 05:26 PM #4
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My neurologist referred to it as "Dope-amax", suggesting that it made you feel "dopey". He himself went through some post-concussion issues/headaches for a while, so he might have just been referring to his experience with it, but I didn't try it for that reason.
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26 year-old PhD student in evolutionary biology, slipped on ice in Feb 2014 while clipping my fingernails and walking to save time (dumbest reason for PCS ever?). Initially just had headaches and didn't feel quite right, but a minor head bump 5 days later started a downward spiral of anxiety, depression, insomnia and fatigue. Had trouble concentrating on reading/looking at screens

April 2014 - did exertion test, passed, started exercising and doing more, but didn't feel much better.

May 2014 - Went on backpacking trip OK'd by doctor, trip itself went fine, but felt worse a few days after getting back, more difficulty concentrating, worse headaches.

June 2014 - Bumped head on ceiling walking slowly down stairs, no immediate symptoms, but caused worsening headahces, more difficulty concentrating and looking at screens. Have not felt as good as I did before this since this bump.

December 2014 - after feeling relatively better I went xc skiing and fell but didn't hit my head (something my psychologist who specializes in brain injuries told me he hoped would happen so I saw it was OK), felt worse

Feb 2015 - back in grad school, light teaching load and some research, nowhere close to operating at my full capacity. Still have constant headaches, difficulty reading/looking at screens, mild anxiety and depression, and just not feeling like my normal sharp self.

Trying, but struggling, to believe that I'll get back to my old self, or at least get close.
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Old 08-01-2015, 09:04 AM #5
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Works well for my migraines, however I don't take more than 50 mg due to the Dopamax issues. Instead, I do whatever I can naturally that might mitigate my headaches. It's a fairly good med., but I personally can't stand that cognitive dulling side effect. Side effects seems better if one drinks a lot of water.
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Old 08-01-2015, 09:46 AM #6
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I was on topamax for 2.5 years after my injury. I tried it at various doses, mostly at 100mg twice a day for most of the 2.5 years. The neurologist did try to up it to 400mg a day, but once I got even a little above 200mgs a day, I started to get kidney side effects and had to go back down to 200 mgs.

I'm not sure it was super helpful for me, the only real difference I noticed in my head pain was that instead of it waking me up at night crying in pain, I would just wake up in pain, but be able to go back to sleep after a while.

I didn't have any other real dramatic improvements with it, but my head pain seems to be atypical.

I've been off Topamax for about 6 months now and was hoping when I came off it, that I would feel less dopey and stupid, but it made no difference there either. Apparently the dopey, stupid feeling is just my normal now.

The only other thing I noticed while on Topamax was food tasted weird and it decreased my appetite. I was not a soda pop drinker before, but I tasted it a couple times while taking Topamax and man it was disgusting!

Generally it seems to be a drug that either works well for people, or there are too many intolerable side effects. For me, it was just meh, but it was one of the only drugs of MANY that I tried that I tolerated at all.

Probably worth a try and maybe you'll be one of the ones that gets on well with it.
Good luck!
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Old 08-01-2015, 07:17 PM #7
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Thanks for all the thoughtful replies.

It's funny the prescriber called it "Dopamax" when we were going through the list of possible medications to give me. We then settled on it because there is really nothing else out there for anxiety that I am comfortable taking now that I know of my negative reaction to serotonergic medications. I'm already on benzodiazepines.

I've decided to not take it for now based on the responses here and my current status. I'm very grateful that I don't seem to be getting migraine headaches anymore but only dull tension headaches from soft tissue neck injury I predict. The risks (potential adverse and side effects) don't seem to outweigh the benefits for my case.
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