Photophobia?

It says it's common w vestibular disorders. Ugh! Lol go figure right?

Whilst not advocating seeing, or not seeing a specialist, your condition is typical of a silent migrain and I get rid of my events by laying down with my head under a pillow, ensuring of course that I don't suffocate :-).. I have been studying the affects of many of the conditions described by the people writing to PATIENT and by applying my professional study and data base, have concluded that in all cases reported, no professional specialists seem to have come up with anything other than expensive trials and tests, certainly not a cure. The facts are that the problem seems to be Neurological, that is the brain cannot cope with conflicting signals coming from our eyes and ears and therefore manifests in varying symptoms such as you both report and many more. My research has resulted in many conclusions, one of which is that most onsets follow an earlier flu or bad cold/sinus illness  and this had led me to follow potential alleviators by going to the root cause, not the condition. Next week (July 25th, 2016) I shall start a new forum that invites anonomously presented and concise details from fellow sufferers, stating their condition before the FIRST onset, as many have advised that they have previously had the condition and then unfortunately relapsed. More then and keep your spirits up as anxiety and stress are common denominators in this illness, but if I have my way, I will get to the bottom of the issue without the expense of visiting various medical professionals and also the symptomatic results of exercises that seem to abound and make people feel worse; those of you who have tried these exercises will know what I mean. Byes for now, Jonathon

Hi JonAustralia

I am interested in the exercises you mention. I have a feeling mine may be caused by silent migraines just a guess,. I darent lie on my left side.

I am told I don't have BPPV, mine started over 3 weeks ago the spinning it's terrifying,. The dizziness almost constant is making me anxious because I had MAJOR SPINAL surgery back in May, which makes me scared in case I fall over, it's stopping mm e from recovering from back surgery etc

Hi again and I'm sorry to hear that you have this on top of trying to recover from your surgery. As I mentioned most onsets follow a major flu type condition and also many advise that it follows major surgery, as in your case. Reading all of the posts in PATIENT makes me depressed at times and that is why I tried to find out some commonality.

I am not advocating exercises, they can help, but mine consisted of violent movements on my bed that simply left me feeling dizzier than ever and wanting to vomit, I stopped doing them, but am not qualified to advise others in this regard; they just didn't make me feel better and in most other cases on this web site, nor did they help others. So Basia, at this stage until I commence trials on Monday, (25/7/16) I can't say any more to you other than to encourage trying to relax and not becoming anxious, as it worsens the condition, drink plenty of water, reduce sodium (salt) and take care walking as I just know how easy it is to fall and we do not want you to do that. Look out for my post on Monday and I shall be able to better describe what my plans are, til then, I'm thinking of you and all of our friends, Jon

Hi JonAustralia

I actually wondered if that OP was the trigger for it. I look forward to hearing from you again soon regards Basia

Hi Jonathon, have you ever had balance testing? It is interesting finding out your own results even though there is very little that can be done to improve the symptoms. I began suffering anxiety attack about 30 years ago. Of course I was told it was psychological, but I always presumed that something physical had caused it because I was drinking, partying and not sleeping for days at a time. I read a book written by a psychiatrist that said that he had found that his anxious clients often improved when taking cold and flu medication, and wrote his book because he felt there was a link between anxiety and the vestibular system. Because of my anxiety attacks I became agoraphobic and felt that it was caused by my eyes and or vestibular system. When I would drive or shop, my anxiety would increase. I felt it was because I was suphocating with over stimulation, both auditory and visual- the motion of things moving past me as I walked or drove. I was also always smell sensitive as a child and perfumes/ grass and some plants where overwhelming. I noticed quite early in my agrophobic state that my throat would close up - like it does when you breath in food or water. It was like a reflex that wouldn't stop and my throat muscles were always closing, which made me more anxious. I had to suck on something or sip water often to relax them to keep my throat open. When I went to the movies one night, my anxiety increased but when I stared at the chair in front of me it calmed down. It was at this time I knew my anxiety was caused my overstimulation of my visual and vestibular system so I went to see an ENT and asked to have balance testing (which had been recommended in the book I read.) He did a few quick tests and said my balance was fine. I pushed to have the tests anyway and they showed I had third degree nystagmus. He said "well there is nothing you can do about it," but I was thrilled to find out there was a physical link to my anxiety. I am still unable to say that anxiety doesn't cause visual/vestibular disturbances or visual/vestibular disturbances don't cause anxiety, but I know there is a link. Too often we are told it is psychological because no one has an answer and as they are not the ones suffering, they are not looking further than what they learnt in textbooks. I became an audiologist so I could study this further, but because of my anxiety, I couldn't stand watching people suffering the same thing while having balance testing, so I chose hearing aids and rehabilation lol!!! Years later I suffered chronic fatigue after a severe, high temperature virus. Again I was told it was psychological, but the psychiatrist I was sent to said it was not.The fact that it occurred straight after a virus should have told all the doctors and specialists I saw, that it was post viral fatigue or chronic fatigue. That was 12 years ago and I have been fortunate that it has improved hugely over that time, to the point where it barely affects my life. Unfortunately my daughter now suffers chronic fatigue after the same type of virus I had. 5 days of 40-41 degree celcius temperatures which didn't ease up to less than about 38.5 even with neurofen and panadol. Anyway, my point is that unless you find answers for yourself, you are unlikely to find them easily throught the current medical system. Thank God for forums like this!!!! That is where I received the most helpful information. I had wanted to create a website where people wrote their medical history, to see what the links between their current symptoms and medical history could reveal. Sounds like the sort of thing you are doing. I think it's the only way that you can find answers or leads now rather than waiting for research to reveal them over the next few hundred years. I hope you get some answers. Good luck!!!!

Also, supposedly chronic fatigue has now been proven to be auto immune which is shown through changes in the brain on MRI's. I think you will find what you all suffer will end up being the same. I see a lot of sudden hearing loss patients who have had a virus, operation or who suffered their symptoms after flying. This too seems to be auto immune a lot of the time too. Still so much to learn!!

Hi and thank you so much for your very informative post. I had Cronic Fatigue in 1992, so more grist for the mill regarding this sorry condition. Yes, although I haven't revealled much about what I am doing this week it is directly related to Post Viral infection, so you are definitely on the money there and good on you for taking such a positive step regarding your Audiologist studies. I am so sorry regarding your child and I just know how stressful it would have been regarding watching her not responding to the normally affective temperature reducing drugs, thank goodness it has settled somewhat; who'd be a parent? :-) . Us all of course who are lucky enough. Back later this week and thank you so much again for your post. Jonathon, Townsville FNQ.

Hi JonAustralia

I am in WA IT'S SUNNY BUT COLD ??

in regards to our discussion have just emailed my specialist will keep you updated, see what he says ??

Hi Basia I am in WA too. Very cold this morning!! Not sure that you are allowed to post ENT names but I wonder who you are seeing? If you write their name ie SMITH as Sin  Mary   In  The Heat (or something like that), we seem to be able to write names without the moderators being notified and closing down our post.