Next up, Topamax

Apologies to all the supportive board regulars—I haven’t been reading or posting lately, but thought I’d come back with an update. In the last few months I have

  1. Started seeing a TCM for acupuncture, herbs, etc. Some positive effects there.

  2. Been diagnosed with persistent post-concussion syndrome. This was interesting because I had been told I did not have a concussion after I was hit by a car 18 months ago. Turns out I probably did all along (the concussion therapist pointed out that if you hit your head on the ground hard enough to send teeth flying and bust your face open, concussion is likely, hmm). So I’ve begun various concussion therapy exercises (balance, eye tracking, gaze stabilization, etc etc) and vision therapy (convergence and divergence, peripheral vision, etc etc. I think there has been some improvement here; it is nice to know the chronic migraine is not the only source of my head issues.

  3. Just saw a pain management specialist. I didn’t know if he would have anything for me but to my surprise he’s lined me up for a variety of things: he tells me my brain is not processing signals properly following the trauma and that the physical pain as well as the neuro trouble are part of this (central sensitization phenomenon). So, next up are:
    —increasing Aimovig to 140mg
    —beginning Topamax, today probably. I’m naturally apprehensive about the side effects and would be glad to hear from anyone with experience. One reason I am curious/willing to try it is its reputed effect with addiction and compulsive disorders; since I have one that I really need to get under control, it’s worth a try
    —some kind of lidocaine/ketamine infusion that is so strong that I can’t drive afterwards, not sure if I am going to go through with it.

For Topamax, I’m aware of the most common side effects and they don’t sound at all great but I do want to try something new since I’m in a rut.

Pleased to read you continue to keep fighting. Strangely enough I was only reading yesterday about it being possible to confuse post concussion syndrome with PPPD which of course can be both linked to and confused with MAV.

I’ve a strong feeling the concussion may be the source of the chronic migraine.

Good luck with the Topamax. You will find a few references to Ketamine on the internet being used for migraine. Some powerful stuff it seems. Helen;jsessionid=EC93B5680DCEC97447BC36F0D7A36B5C?pContentID=4492&p_applic=CCC&pElementID=578&pMenuID=464&

Hi there. I took topamax for 18 months. It wasn’t great – as my doc said, it makes you feel stupid – but it worked. For me with was worth the side effects. Good luck!

Thanks Helen! The chronic migraine predated the concussion, albeit at a very low level. The concussion therapist I saw suspected post-concussion syndrome complicated by chronic migraine, with a possible underlying vestibular issue. So no wonder my head does not feel normal, lord. But at least some of these conditions can be addressed, if I get diligent with my exercises.

Thank you so much. I’m only 36 hours in and feeling some eye pain and headachy but I can still remember my own name and in possession of my sanity. Amazingly it does seem to have helped rapidly with my cravings and impulse control, so it could be at least a temporary win for that alone. I wonder if keeping the dose low could temper the side effects. I’m beginning at 25mg/day increasing gradually to 100mg/day, which is moderate as I understand it.

Side affects of drugs are reputed to be dose dependent.