Anybody had surgery for vestibular disorders

Did you get this off your GP ? X

Yes today. Prescribed initially by a specialist but prescribed today for a second time bh GP.

Two days without it joint pain and vertigo returned.

Thank you Margaret I will ask for this when I see my consultant next I will try anything I'm so desperate to get rid of it it's ruined me and my confidence I've been stuck in for 4years at the end of my tether x

I know how you feel. It took most of my adult life to be diagnosed. I am 54 now and in my early 40s was diagnosed with a form of vasculitis.

After that I still had a major struggle to get treatment. I am now in a kind of remission but it will never go away ....there is no cure. If you have the same issue you need ti see a rheumatologist or an immunologist to get a full diagnosis. Surgery ...if it is this....will not help. Controlling the disrase is all that will help as it did with me x

Hi Margaret:

?May I ask what was causing your vertigo?  I'm having problems from lingering affects of vestibular neuritis.  I have derealization and it's really scary when that hits.  What is Plaquenil?

Thank you,

Nicole

Hi Nikki. I have a type of vasculitis and most types of vasculitis can cause these neuro type symptoms. In fact my symptoms were mainly neurological. I had a long course of treatment which got rid if my neuro symptoms but after stopping treatment symptoms have started creeping back. But this time I have some vertigo and very bad joint pain in my feet and neck.

I was prescribed Plaquenil for the joint pain. Sorry it has another name too hydroxychloroquine. It is prescribed commonly for ra and Sjogren's. It is an anti malarial/anti inflammatory drug and it has helped massively with the pain in my joints. But I also notice it has sorted the vertigo.

If you have vasculitis it can cause inflammation in the body. Inflammation can also affect the central nervous system. That is what specialists I have seen over the years have explained to me. That inflammation can cause symptoms as you describe...vestibular symptoms. So people can be misdiagnosed ir be sent in the wrong direction looking for neuro problems or going to ent looking fir answers and they can't help (I was seen by both and they weren't able to help me). Once I had a proper diagnosis and they were able to treat the cause, I hadn't had vestibular problems for 4 years. Now it is only coming back minimally. I am hoping that the Plaquenil continues to keep it under control.

I am interested to see you are also a member of the abdo group. Abdominal disorders are another common symptom of vasculitis. I have been diagnosed as having ibs in the past . I don't have ibs. I have gastritis and lots of inflammation in my stomach. I am not food intolerant and don't react to particular foods. But when flaring I have gastritis and that causes havoc with my stomach. I have noticed that Plaquenil has also calmed down the inflammation in my stomach. That was a pleasant surprise. My specialist didn't say it might have that affect but it has. It's a very good drug.

Hiya Margaret

I haven't tried that drug, they have given me so many tablets and nothing has helped.

My ENT consultant said that if my symptoms continued he would put me on some tablets that would be for the rest of my life so didn't want to give them to me unless needed.

Do you think it would be these?

I am having such a bad day today I have no energy at all and can't even get up and if I do I am dizzy and disoriented.

Is tiredness and hot flushes and disorientation other affects of vestibular disorders?

When just sitting down my head constantly feels fuzzy and when I move my head my vision feel strange as well like blurry but not awful but so strange.

I am not sure what medication he meant but you may need to accept that there is no easy solution to this. What I have won't go away but there are treatments that make it so much better. But you need a proper diagnosis and I feel you need to see a rheumatologist for that.

But yes hot flushing is part of the symptoms I had. Does your face and neck flush red?

Yes I do get a red neck when I get a flare up which doctors also noticed when I was in A & E but didn't do anything about it apart from refer me to a neurologist that then diagnosed me with vestibular migraines after every scan and test possible.

Have never seen a rheumatologist though what do they do? X

Rheumatologist can diagnose particular sorts of disorders. Totally different remit from a neuro.

The red flushing like that can be typical of Lupus which can also cause vestibular problems. For disorders of that kind you need to see a rheumatologist or immunologist for diagnosis.

Doesn't mean that is what you have but it is something which should be investigated and ruled out.

Hiya Gill

That's strange as I have posted a lengthy post previous just explaining my symptoms and my diagnosis from every specialist in the planet.

I am currently having my 4th episode and today is a really bad day.

I am so tired I have no energy to stand up and when I do I am so dizzy and diisorientated.

Yes they are showing up now, but when i posted there was no previous posts by you showing!

Yes re  the tiredness, yes it's def a part of it, aat least in mine and others experience. Doesn't seem to get much attention from drs though! Not much you can do when that happens but rest.  The head movements do make it worse because your eyes, ears and vestibular system are out of sync basically. 

This is why I am so frustrated as doctors just don't seem to know what it is and keep giving me anti sickness tablets but I am not sick with it or feel sick it's just the dizziness and the tiredness etc xx

My GP said to me on Tuesday "Mrs Harris if there was an easy solution don't you think we would of given it to you".

Oh grrr! An easy solution! What the hell that all about. What they're saying is we know f all,about the condition! You should have said, 'no, I guess you dont know enough about it.  I read somewhere that in gp training they get only bare details about v.estibular disease. It's not a priority for them. My gp goes deaf when i mention it when I'm consulting about something else. I,point out that if i didnt have it, i could,deal better with my crohns, arthritis etc etc.