Tinnitus Affects My Vision, Equilibrium

My strange problem started seven years ago when living in China. I began bending my glasses because my world seemed tilted on an angle as though my left eye was crooked. I thought it was my glasses and kept bending them since I thought they were crooked. My poor glasses were pretty mangled after a couple of months.
We had to leave China and return to New Zealand and I was unhappy about that. But about a week after our return while holidaying at a beach I suddenly felt as though I was on a rocking boat one night. I went to bed thinking maybe the glass of wine I'd had at dinner had made me tired. I very rarely have alcohol.
Nest day I thought all was fine until after dinner the same thing started but this time I'd not had the wine with my meal. I went to bed and started having violent vertigo. Next morning it was still there and I was worried about how we would drive home because any movement made me physically ill.
On our return home I was so bad I couldn't walk so my husband took me to the hospital. I had some burning sensation in the skin of my thigh. I'd had some symptoms like MS about five years earlier and had brain scans ruling it out but no one could find the cause and after eight months they dwindled away. So on my arrival in hospital with vertigo and burning in my leg they said it was MS and I was having a relapse so was sent for another scan. Once the scan came back fine I was treated badly! After a week I left because the neurologists all insisted I was faking symptoms. So I signed myself out.
A couple of days later I began to have strange vision problems where my vision would start bouncing and shaking for up to a minute each time and then stop for seconds or minutes. It made me feel strange in the head! so I went to an eye doctor. After lots of tests he finally said he saw my left eye jumping, shaking and twisting but that it was so slight it shouldn't bother me. Well from my perspective it seemed as though my eye was moving much more and it did bother me to the point I was on medication to prevent my vomiting constantly. He diagnosed superior canal dehiscence which is a muscle of the eye twitching and making the eyeball twitch - not the eyelid. He said it wasn't bad enough for medication at this point.
I was happy I thought I had the answer until a couple of weeks later I developed a strange clicking noise in my left ear like a Geiger counter which was exactly in time with my vision movements. So I went back to the eye doctor and asked if the nerve to the eye affected the ear also. He looked shocked and said I'm sorry but this is not SOM. This is a brain stem problem and you need a neurologist.
I went back to my GP to request a referral to a neuro and she said they had all washed their hands of me and she thought I should see an ENT. I went to the ENT and had all the tests under the sun over months. Couldn't find a problem with my ear. But he could see I had poor balance and sent me for exersize a to improve it. I went but by this time I'd learned how to appear pretty normal to any observers and walk fairly well myself so although the people were great they weren't able to help me further.
I was told by the ENT to return if I developed any new symptoms. He scanned my head for superior canal dehiscence. The scan showed thin bone on the left side but he says my symptoms aren't SCD. I have had other symptoms which seem like MS - whether these are all connected I have no idea but my brain scans are normal. I get spasms and cramp in my buttocks and thighs that make sleeping or resting difficult for up to a week at a time. I have small twitches and spasms all over my body and wonder if nerves are twitching in my ear causing my strange T and vision jumping. I regularly wake from sleep due to spasm in my upper stomach pulling me suddenly upwards.
It took me over a year to get used to living with this Geiger counter in my ear and my vision bouncing with it. Some days I may need a stick to walk. It comes on in bursts of seconds to minutes and on a good day I can could have a hole hour where it's totally gone. On bad days I have seconds only between bursts. Sometimes I need to just lie down in a quiet room and rest for a couple of hours because it's too bad. In the beginning I couldn't do anything. I wanted to die and prayed not to wake in the morning. Seven years now and I no longer need medication for vomiting. My stomach is so used to it.
I no longer want to die. If I have to I can live like this but I'd love to find out what it is and get rid of it. Or even to know that there is nothing to be done so stop wasting time looking for a cure! But as long as I don't know what it is I keep thinking there is something that will fix it. I've not found any doctors who have heard of such a thing. I guess it's not really tinnitus but there's no forum for me so I'm here.

 

I'm sorry to hear this. Complex neurological problems are so poorly understood

 

No physician has the right to accuse any patient of faking symptoms. That's about as demeaning and discouraging as it gets. I'm sorry you had to go through that at the beginning of your long and difficult journey to where you are today.

 

Thanks for the supportive replies. This post was supposed to be in the introduction forum and I don't know how it got here?
Oh and I noticed I put superior canal dehiscence as the eye docs first diagnosis. It was superior oblique myokimia. Or SOM. Superior canal dehiscence is in the ear and something completely different which the ENT looked for.

 

Mad maggot, I read your post and I couldn't believe that someone else has experienced the same thing I am now faced with. I thought I was losing my mind, but this condition is real. It has been since January of 2020 that I have been suffering with Tinnitus, vertigo, blurred vision, clicking sounds in my ear and equilibrium totally off and now the bouncing vision. I have seen several ENT doctors, eye specialist and neurologist and no one has yet to diagnose my problem. I feel as though I am living in a world of the unknown and it it taking control of my life. If I wasn't a strong believer in the Word of God, I probably would not have had the energy to even write this post. Just reading how frustrated you were when it appeared that no one was getting to the root of your condition, help me to feel confident that someone else understands where I am right now. This condition is so debilitating and it tries to rule your life, but I am a fighter and I know that I am going to find an answer to what is happening to me. I do go for physical therapy and it has helped my balance. I am doing a study today and hope that I could get some additional answers to what's going on. I will keep you posted. Thanks