I was recently diagnosed with Henicrania Continua and am being treated with botox which has taken the pain away completely after 9 years of constant agony. So I'm gradually getting my life back on track but I still have to take Lyrica as well which makes me tired and a little slow. However, what has now become obvious to me is the problem I have with my ear on the affected side which hurts all the time (a walk in the park compared to HC pain!) The ear problem has been masked by the HC pain so I didn't realise it had got so bad. It is blocked and I have for several years had many ear infections. I have had tinnitus for 18 months and I am now deaf in that ear. I am waiting to see the ENT specialist but that will probably be a long wait. It also seems apparent that when the ear flares up so does the HC, it is definitely worse when the ear is worse and I thought I would try taking Indometicin when my ear was particularly blocked and painful and it got rid of all the symptoms. I am now convinced that the ear issue is definitely aggravating the HC if not causing it and I know there are not many of us out there but is there anyone else with HC who also has consistent ear problems, eustacian tube failure, ear infections, etc. Would be good to know if there is a connection and maybe a solution to this horrible condition.
I can ask my mom who has HC. Did you mean to post this in the trigeminal neuralgia discussion board? Are they related?!
No probably not but nowhere specifically for this condition but HC does have symptoms similar to ATN & cluster headaches hence why I ended up here
My mother said she definitely gets ear pair with HC. Indomethacin takes her ear pain away!
I know some do get ear pain with HC, I'm just wondering if there is a direct connection with ear problems and HC. It definitely seems to be in my case. Now I just need to convince the doctors! I thought by asking as many HC sufferers as possible I may have some solid information to give them. How is you mom doing with her HC? what treatment does she have? Botox has worked miracles for me