Hi James, understand your journey to hell completely. Ive only been diagnosed recently with Vestibular Migraine after 8 years of climbing walls. I don’t get the Migraine but a neck pain instead and think this may have been the reason its taken so long to get a diagnosis. Ive had to date 1 neck x-ray, 3 x head MRI for the balance, sent to local Optician to find the problem with balance and double vision (8 yrs). He didn’t have a clue and neither did the hospital optics. 3 x ENT visits. On the final ENT Visit, (which I went private). I was so distraught, following negative results. I ended in buckets of tears, totally broken. I was so desperate because apart from the balance problem which is there all of the time unless I’m sitting still or laying down as, I too have tinnitus in both ears but since June it was joined with music of all types, including orchestras, military bands, male and female choirs and loud and not masked by the tinnitus. Yes I was broken. Through my sobs I ask to be referred to a Neurologist and FINALLY got a diagnosis with 10 days.
Other symptoms are lack of energy, sensitivity to light and sound, and forgetful. For the last 10 days I have been taking the same med as yourself Amitriptyline 10 mg to increase to 30 mg. how i will ever get past 10 mg, I don’t know. Tried to increase to 15 mg on Monday night. Tuesday I was completely out of it and couldn’t function at all. So have now returned to 10 mg, and may increase at a later stage.
The only good news is that the loud music has now decreased to a whisper with mostly bag pipes sounds and does get louder when TV is on in the evening and then takes a while to get to sleep. So James the journey continues. I did ask how long will it take to get back to being normal again. The reply was ‘How long is a piece of string’ as we are all different.
My Balance is like walking on a water bed or wearing spongy shoes. Is this similar to yours? I just wish, doctors and physicians would talk to each other.
Best of luck James.