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Originally Posted by JudyAnn
My daughter has been suffering from post-concussion syndrome for 18 months now and it keeps getting worse. It started with an assault that left her unable to read or look at computer screens without triggering an instant migraine. Eight months after the assault she suffered an extremely minor bump to the head and found shortly after that she was getting migraines from listening to audiobooks. Every couple of months since then, there have been other minor incidents, such as hitting her head slightly or being in a vehicle that stopped too suddenly, which has left her with new migraine triggers.
Now she is worse than she has ever been before, she is no longer able to read, write, look at computer screens, look at streetlights, listen to music or even talk to us without getting a migraine. She has developed an extreme sound sensitivity, and finds that migraines are even triggered by sounds made by her own body such as cracking joints or even just swallowing. Earplugs do nothing to block these sounds, so for the last month, she has had an uninterrupted migraine that no medication seems to be able to treat. She has tried Propanalol, Sumatriptan, Topamax and Gabapentin. None of these seem to help. The Topamax actually made her migraines worse. She is so disabled now that she can do almost nothing other than lie in bed all day with her eyes closed and her earplugs in. If she even says one sentence to us it causes a migraine now. We are starting to lose hope because things keep getting worse, and there seems to be no way to stop the cycle that she is in.
I am posting this looking for any advice or any reason to feel that this will ever get better. Has anyone experienced anything like this? How do we end the cycle that she is in so that after 18 long months she can finally begin to recover? Her main migraine symptoms are a persistent throbbing, dizziness and extreme pressure in her head. Please let me know if there is anything we can do. If anyone has had these types of symptoms and gotten better, please let me know so we can have some hope. Thank you.
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Hi JudyAnn,
It looks like almost 2 years since you last posted, so I'm hoping your daughter is doing much better. I stumbled upon this thread while looking into the drug Topomax that was recommended by neurologists for treating migranes associated with a TBI.
In any case, your very first paragraph describes very much what my girlfriend has been going through following a car accident in February 2017 roughly about 18 months ago. She has hypersensitivity to noise and often has headaches similar to what your daughter was describing ie pressure, temples, nerves on forehead etc even her jaw.
Last summer she was better off, maybe even improving but once feeling a bit better she would push herself too hard and then would get much much worse. There was also a lack of good advise from GP, friends in understanding what had happened. Lying in bed and listening to audiobooks is an everyday thing here too as little else can be done.
If you get this message I would love to hear how your daughter is doing and what treatments and/or medications helped her along the way. I hope to hear from you.
All the best,
Jeremy