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A pain in the neck!


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.

My journey to Hell ... and (almost) back.

Hi Carol

(Forgive me I may break this out as a separate thread dedicated to you)

Gosh what an awfully long time it took you to get a diagnosis. My heart goes out to you.

Yes I did used to get that feeling, I call ‘marshmallow floor’. I no longer feel that. It went early on, maybe within the first year.

My MAV is now limited to tinnitus and some days an extremely slight level of unsteadiness. I’ve made huge progress and mentally I’m almost back to normal if permanently changed by the experience (and certainly there are some plus points)

It took me a surprisingly ‘short’ 2.5 years to start improving and 3 years to get my balance back. But the medication provided its own relief within days of taking it (I started about 6 months in and took it for 1.5 years)

I hope the MAV protocol helps you. You should definitely continue to keep an eye on what might have kicked it off for you, which is normally very individual. Mine was caused by pointing a shower into my ear. IMHO it cant ‘just happen’. There has to be a reason.

Yes I was told the same thing about how long it would take. I saw my doctor last September and he said I had ‘6 months to 6 years’ left(!)

Ami will make you lethargic and sleepy. Take it at around 9:30pm. You do get used to it after a while. Upping to 20mg really helped me.

Hopefully it will settle down once you get the right treatment. Amitriptyline may be all you need. Consider the diet too, especially reducing caffeine significantly.

Best of luck to you too!!


@CIL just want to say that the first weeks/ months are difficult because we are looking for quick fixes, but you will see how slowly you will start to feel better. Keep a diary (i would say weekly) of symptoms so you can appreciate progress. We are here with and for you😘