Running out of ideas

Hi all Im a newbie on here and wondered if someone could give me a bit of advice?

For 4 years I’ve been going back and forth to the docs trying to get a diagnosis for why I feel dizzy and crappy all day everyday. The doc has finally put me on betahistine (he thinks I have menieres but I dont agree) but its making my symptoms worse! Ive never heard of that happening and neither has my doc. I’ve gone from v v rarely getting spinning vertigo to frequently getting it and feeling loads more off balance than I did before.
My original sypmtoms were feeling like im looking at the world through the wrong spectacles, everything looks strange, like im behind a sheet of glass if that makes sense? I get dizzy but not spinning, more like my head is floating or my body is being pulled forward then snapping back or like im going up and down on an escalator. If I look at busy patterns like cobbled streets or slatted fences my eyes cant tolerate it and it sets off dizziness, computers are the same. I thought the problem was some sort of eye disorder as it seems like its my vision causing the dizzies but after 7 eye exams all being normal it appears not!
Ive had balance tests on the NHS - im told they are normal
my bloods are all normal
I get tinnitus in both ears at random and it doesnt precede any dizzy spells
I have a slight feeling of fullness in the left ear but its been there 24/7 for ages and the docs say its not infected.
I dont think its menieres because I dont fit the profile - my tinnitus is ‘static’ or whining noise at high pitch, I dont have intense vertigo, the ear fullness is constant and not connected to the dizzies. Plus the betahistine makes me feel even worse!
I do have a stiff neck a lot and pain in my eyes and headaches around my eyes, temples and bridge of nose and im constantly tired, to the point where I feel like I have chronic fatigue or something! And I noticed when I’d just given birth I got massive headaches and my symptoms became really bad, my eyes had just had enough of everything!
My question is does this sound like MAV or something similar? Can MAV cause 4 years of 24/7 feeling of off-balance funny vision symptoms?
Any advice would be very welcome!
Many thanks!

Hello,

In short, yes, it sounds exactly like MAV. All of the symptoms you describe will be familiar to people on these boards, it’s just a great shame no specialist has come up with this as even a possible diagnosis for you, the right medication might have saved you years of suffering. The visual symptoms you describe are all things I have experienced. It is also extremely common for people with MAV to worsen after childbirth due to hormone fluctuations which trigger a worsening of symptoms.

You mentioned the NHS, I am also in the UK. One of the problems is how few GPs and ENTs understand this condition even now. A number of people get bogus menieres diagnosies, the sad thing is that menieres is very rare and migraine is very common and yet ignorance on the part of specialists re MAV mean people end up with the unhelpful menieres diagnosis. To have a menieres diagnosis you should have low tone hearing loss. MAV symptoms can be 24/7, mine were until I got the right medication, as are many people’s on these boards.

What specialists have you seen so far? Have you seen a neuro otologist or a neurologist? If not I can recommend people to see in the UK who understand this condition. The info section of this board has lots of helpful articles by specialists which can give you a better idea of all the symptoms MAV can cause.

H

H

I second what Hannah says!
I read your post and thought I could have written it. It took me 4.5 years to get a diagnosis. Def need to see someone who can treat u

its such a relief to know im not going mad! you get to the point where you think you’re being a hypochondriac dont you? Thank you so much for taking the time to reply.
I’ve seen a neurologist who did an MRI and basically said ‘the good news is you dont have MS’ and sent me on my way lol apparently all that showed was a polyp on my right cheek sinus and scarring on my mastoid sinuses, neither of which cause dizziness so Im told. Ive seen an ENT who said it might be menieres and put me on betahistine which did nothing for me and now 2 years later ive been put on it again by the GP - I thought I’d give it another go out of desperation. Its doing nothing except making me dizzier unfortunately. When I mentioned migraines to my doc he said maybe and prescribed propananol but i was too afraid to take it as I have low blood pressure and my hubby was on it for hypertension and it made him really ill (not a good reason I know lol). After that all mention of migraines was forgotten.
And yes Im in the UK and totally agree that getting a doc who knows anything about this is a nightmare so any specialist’s names would be fantastic!

thanks again for replying its much appreciated x

Hello,

Glad you’ve found the board, it’s awful to think of all the people out there who might be feeling like this and don’t get the diagnosis or help they need.

Two docs I haven’t seen but know of in the uk who are good are Nicholas Silver, a neurologist, he’s in Liverpool. A friend of mine sees him, there is an article written by him somewhere on the info section on this board. He totally gets it and is very good. This is a link to info on him.

thewaltoncentre.nhs.uk/medic … r_nick.asp

Another one I’ve seen people talk about on this board is Dr S Surenthiran. He’s a neuro otolgist (specialists in balance disorders) Here’s his info.

bmihealthcare.co.uk/consulta … p_id=45132

My friend who sees Dr Silver is actually based in London like me, but managed to get an NHS referral to see him in Liverpool. I am seen in the National Hospital of Neurology in Queen’s Square, London, but am not recommending you go there presently as I am unhappy with one of the two neurologists who run the neurology department. Prior to her arrival I rated them but she has put me off. I may change neurologists, in fact I’d probably go to Dr Silver if I do change.

Don’t know how useful these are to you, where are u based in the uk. It may be that someone will know of someone near you. There are lots of things you can do yourself in the meantime to try and manage the condition - lifestyle modifications like cutting caffeine, looking at your diet for migraine triggers. There is an absolute wealth of info about the migraine lifestyle on this board, it’s worth having a read and seeing how much you could do yourself to see if it makes a difference. Some people get great results just from cutting out certain triggers.

I can’t advise you re low blood pressure and propranolol, that’s one for your GP. I don’t have blood pressure issues and do take propranolol and it manages my condition for the most part and allows me to live a normal life. That said, there are loads of other drugs that work as migraine preventatives, so if you are worried about that one there are plenty of others you can try. You could try asking your GP if there is another preventative you could try.

H

You described me right on, 4 years of chasing it, including two surgeries that were a waste…now trying verapamil ( 6 weeks) and Celexa 5 days…I think MAV is the right issue, now after 4 years I can try to treat it.

Im in Manchester so Liverpool is ideal thank you ill go look him up and see if I can talk my doctor in to referring me over there lol I think my doc would do anything to get rid of me at the moment!
You have all been so helpful I feel better just knowing that I might have found the answer at last, it really takes over your life. Totally agree that there must be many more out there in the same boat as me - its silly to think in this day and age that it takes so much badgering on the part of the patient to get a proper diagnosis. Especially when its not exactly a rare illness!

Im really glad I found this site!

Thank you all again xx

Jaybird

Im glad you’ve finally got the right treatment, keep me updated on how you get on!

I would love to post on the success stories one of these days ! Thanks for your thoughts!

Hannah

I just wanted to update you, I emailed Dr Silver directly and he said it sounds like I have MAV and gave me details on how to get in to see him - hes really helpful!

So im off to my GP tomorrow to ask for a referral, fingers crossed he says yes!

thank you sooo much for passing on Dr Silver’s details to me x

hope you are well, all the best

Fiona

Hi fiona,

Really glad Dr Silver was helpful. Generally on the NHS, I think GP’s don’t want to refer out of your catchment area. Initially, when I was having a useless time with ENTs, my doc was reluctant to refer me anywhere else as I think there are two or three hospitals she was meant to refer people to. I am surmising all of this, I don’t know how it works exactly. I think they can refer you elsewhere if you have failed to get the right treatment from a specialist within your catchment area. As I mentioned, my friend in London managed to get a referral to Liverpool. In short, I think they can do it if they want to, I just think it is a bit of extra hassle for them so you may need to be persuasive. After over 4 yrs of living with this dizzy horror, I think you have ample grounds for wanting to see the right specialist elsewhere.

Obviously there is the option of going private if you can afford it and your GP proves very reluctant. The up side with your case is that you have already had the MRI and the balance tests, which are expensive. You would probably only need to pay for one consultation to be prescribed a drug to try, and if you’re lucky he’d then transfer you on to his NHS list. I think a specialist has the ability to do this if they want to.

Anyway, here’s hoping your GP is helpful. There is actually an article knocking around somewhere on this site, which someone posted recently. It was in a medical journal and written for GP’s about MAV. Maybe you could find it and take that with you. Wish I could remember where it is exactly. I think it was from Medicine Today.

H

I think this is the link that Hannah mentioned re the article in Medicine Today. My GP was v. impressed by it. It might help yours! Good luck & hope you get to see Dr Silver.

mvertigo.org/articles/vertig … ne2011.pdf

Barb

— Begin quote from "Hannah"

I am seen in the National Hospital of Neurology in Queen’s Square, London, but am not recommending you go there presently as I am unhappy with one of the two neurologists who run the neurology department. Prior to her arrival I rated them but she has put me off. I may change neurologists, in fact I’d probably go to Dr Silver if I do change.

— End quote

Hannah, I was mistakenly referred to the dementia team at Queen Square who subsequently asked me to go back for a neurotology assessment. I’m currently trying to find out exactly what has been arranged and who I would see at Queen Square.

Based on your experience, can you give me any tips about dealing with Queen Square in order to avoid the sort of problems you have encountered.

Thank you.

Hello Wexan,

My problems are with the neurology department, not neurotology where you are being referred. I started in neurotology to get my diagnosis and was eventually referred on to neurology when they had tried a number of drugs which didn’t work and they felt I needed a neurologist to take things from there. I have major problems with side effects.

That said, I would strongly recommend getting referred to Dr Rosalyn Davies within neurotology. She is very nice and my impression based on people’s experiences is that they prefer her and her diagnostic skills to Dr Luxon who is the other (not sure if there are any more) consultant there. My experience with Dr Davies and her team was completely positive, would thoroughly recommend going there.

H

Fiona,
WHen do you see Dr. Silver?
Looking forward to hearing how your appt. goes.
Best of luck,
Kelley

Well I saw my GP today who said that as Migraine is a common problem he could probably deal with it without referring me anywhere. So he’s prescribed me Topiramate for a month on an increasing dose, with ibuprofen for acute migraines and domperidone if I feel sick. Ive got a banging headache today so I was too grateful for the medication to argue!

I did ask Dr Silver how much for a private referral and he said its £385 for the first appointment and £185 for follow ups, thats beyond my budget but other people might find the information useful…

That’s a very logical medication to take. Just make sure and go really slow. Many people get good results, but you need to find your “sweet spot”…so take your time.
Keep us posted!
Kelley

— Begin quote from "Hannah"

My problems are with the neurology department, not neurotology where you are being referred. I started in neurotology to get my diagnosis and was eventually referred on to neurology

— End quote

Thank you for the info. It seems I am going the opposite way around to you. I was initially referred to “cognitive neurology” who detected some other problems including hearing and balance, so they are asking for some neurotology investigation.

They haven’t specified exactly what investigation and I am trying to find out. When I make my inquiries, I’ll let it be known that I have a preference to be seen by Rosalyn Davies.

-Wexan