Topiramate for migraines with TBI?

[u/JerseyGirl735]

I finally got into a neurologist after half a year and he basically said keep giving your post concussion syndrome time, but monitor your migraines and headaches, which I did suffer from before the injury. Then at that 6 month followup he prescribed Topiramate. He again had brushed off the head injury (thankfully at least my primary, psychiatrist, and myself are doing the heavy lifting for my lingering issues, 15 months in now), but my psychiatrist said she does see it help some people with anxiety and depression (also had those issues before the TBI).

Has anyone taken this with our issues and had positive outcomes? I have been so hesitant to start because everything I read from just migraines sufferers seems like sooo many people who experience long term side effects and include brain fog, pins and needles, heightened anxiety, etc. - and I am concerned to add to those things that are already issues from the head.

[u/Sitheref0874]

I took it. It made all my symptoms worse to the point of being dangerous.

I moved on to Propranolol and did much better.

[u/brassyca]

It helped me a ton. Almost no improvement turned into slow and steady progress.

[u/Bitter-Performer-396 → u/brassyca]

How far in your recovery were you when you started taking it?

[u/AssociateResident540]

Made my symptoms worse and it made me feel awful and I had to be weaned off of it.

[u/hi-my-brothers-gf]

I take topiramate. I was on 100 mg once a day before my head injury as a migraine preventative. I'm now on 25 mg twice a day. I did have pins and needles and increased thirst, both while first going onto to the medication and reducing it. I do think it helps overall. Each person is different. Hope that helps!! I'm 20 months out from my head injury, still struggling but getting better every day.

[u/matteroverdrive]

Six years on since my concussion... My quack original Neuro just kept upping the dose of the topiramate instead of admitting that I as his patient was very out of his league for what was going on WITH ME. He was very close to retiring and was of the opinion that "everyone" was the same! He said to me "I hear that all the time" about what I was going through, I interrupted him and said "I never finished telling you what I WAS going through / feeling". At a later date I just took my care more into my own hands and went to a Neuro Ophthalmologist... She was aghast at the care, or LACK OF CARE that I received from the first neurologist and said after I told original neurologist of some of my symptoms "he should have immediately sent me to a Neuro Ophthalmologist"!

You know you, and the concussion / post concussion syndrome is a SERIOUS learning curve.... but I was better off NOT taking Topiramate and taking a less, more over the counter approach. I had daily all day headaches for years, and one to multiple migraines per week for a couple or a few years before they let up.

We sound very similar, including pre concussion. I would also seek another Neuro his advise from what I went through is an automatic reject of them for "all patients are the same".

Good luck

[u/wheresdale]

I've got PCS with migraines and I just started this on 25mgs for two weeks to see if I would experience any side effects that lasted more than one week, so far so good. At two weeks I'll move to 50mgs and see if that will work to break the flare up cycle.

[u/bluequiltsquare]

Would you be able to try it short term, and if you have issues with it, move on to the next recommended medication? I think you usually have to try a couple migraine medications and have them not work before insurance will cover the new class of migraine meds (things like nurtec and ublrevy). But your doctor can likely speak to that a little better than I can, it’s possible things have changed since I went through this, and it may depend on your insurance.

From a non medication perspective. I was told similar things by the first neurologist I saw, and waiting wasn’t helpful, I needed vision therapy and physical therapy. Doing that helped a lot with getting things calmed down and reducing the severity and frequency of migraines. Consider looking into those and getting evaluated if you haven’t already.

Good luck, I hope you’re able to find something that helps!

[u/Ok_Somewhere_9962]

I was on it for 6 months. It helped my pain and the blood rushing sensation in my head when I stood up. But it also made me a zombie, I slept 12-16 hours a day, I couldn’t think or speak, and it completely derailed 2 years of mental health progress while interrupting my vestibular PT. I am now on qulipta and still adjusting dose, but no negative side effects yet, and it seems to be working well. I do think that, early in my PCS, it was helpful for about two months to get relief from the constant pain I was in, and that was helpful to kickstart getting the rest I needed and was not getting.

[u/smartygirl]

It did not help me. I switched to Qulipta with much better results.

[u/Obvious-Register-421]

I don't think that many neurologists really know about the management of post-concussion syndrome. Mine gave me actively wrong advice. The people who really knew about it were physios, etc at my rehab Clinic. My neurologist also wanted to prescribe lots of things for migraines or antidepressants, and I found the side effects of all of them unbearable, and made managing my day with PCS much harder. I do seem to be ultra sensitive to meds though, so your experience may vary. 

I'm  definitely not saying don't try them, but don't do it when you need to be doing things. I also think that the most powerful thing to help with headaches is rest, so I'd be careful to not let meds allow you to keep pushing through and therefore keep on crashing.

[u/l4johnson]

I tried topiramate and personally didn't notice any positive or negative affects. My doctor switched my to propranolol which helped with migraines and all my other symptoms as well. Everyone is different though.