Advice on MAV Greatly needed

Hi everyone,

This is the first time i’ve posted on this site and looking for some advice from those of you who have a better understanding of this condition. Like many of you my journey with dizziness has been going on for a while. In January 2006 I
visited Thailand. I felt absolutely fine on the plane but when I got off I felt a strange sensation. I would describe it like bobbing up and down which made me feel sick, very wobbly marshmallow legs etc. Luckily this only lasted a few days. Two years after that, once again on a flight to Egypt I experienced the same but this time it was more severe and lasted for 10 days - made me feel so yuck it basically ruined my holiday. I visited the doctor on my return and he said it was labyrinthitis - prescribed me some anti sickness meds and sent me on my way. Didn’t end up taking the tablets as the feelings once again left me completetely. Had no other symptoms until May 2010 when after suffering with bad headaches
for 3 days I became very dizzy again. It was much worse this time - when I turned my head it felt like things moved up and down and just felt like I was internally bobbing up and down constantly. Only relief strangly was when I was driving in a car. This episode lasted the best part of 7 months. It was the worst 7 months of my life. Was off work for 6 months, got nowhere with doctor - just kept giving me anti sickness and travel sickness tablets. Initially I was told it would clear up in a week, then 2 weeks. At 4 week point I convinced doctor to refer me for VRT but got a letter through telling me this would take 6 months. Nearest balance clinic to where I stay is in Leicester. Tried to be referred through NHS but was told this was not an option. Through absolute dispair I ended up travelling to Leicester and paid to have test done privately. Tests included videography of my eyes, standing on a moving platform to check my balance a hearing test and something called a fistula test. All test results came back pretty normal but apparently I appeared to rotate to the left and had a visual preference. I was given a diagnosis of vestibulopathy (whatever that means) with mal debarquement syndrome. He did think there was inner ear damage but did not indicate in which ear!

I started very basic VRT which was given to me but these exercised were general and not tailored to my specific condition. I improved slightly but by this point I felt very down, like noone (not even my partner) understood how I felt. I wasn’t sleeping and became very stressed and tearful. I visited the doctor again at this point and he put me on fluoxetine (anti depressant). After a few weeks on this my anxiety began to settle, I managed to return to work part time (very
hard to begin with) but gradually symptoms reduced until I felt pretty much normal. Occassionally if I was tired I would feel a little dizzy but eating well and having lots of sleep helped.

Out the blue symptoms flaired up again six months later but not as bad. Luckily this was at the start of my summer holidays so had 6 weeks to rest and get better. Think this helped to keep my anxiety under control. For last 6months again I have felt pretty much normal until I took this nasty bout of sinusitis 4 weeks ago. Headaches were so painful (constantly above eyes and back of neck for 3 days). Once headaches cleared up again I was left with dizziness. Have since been to a specialist physiotherapist who thinks my initial bout of dizziness was caused by a virus but has since triggered MAV. This is first time this has been mentioned. I’ve been put on 10mg of nortryptiline, put on food restriction diet and have been told to come off the pill. Only started meds and diet on Thursday.

To those of you out there who live with this condition my questions are, does this sound like MAV? How long normally does it take for meds to start taking effect? and do you have better days that are then followed by worse days? Today I feel alot more dizzy than yesterday.

Sorry for long post - any advice greatly appreciated
Thanks

Caroline

Hello Caroline, without ordering specialist tests your first doc seems to have jumped to the conclusion that you had labyrithitis. Who knows if he was right in that diagnosis or not but at least he regarded your condition as a balance disorder which is more than my GP originally diagnosed. However your doc hasn’t been very helpful in getting you an NHS balance assessment.

At least you later got some balance tests in Leicester, even if they had to be done privately. Their diagnosis of vestibulopathy and mal debarquement syndrome tend to involve ear damage but don’t explain the head pains you get. Of course your balance and head pain symptoms could be separate problems but a lot of people here would connect the two together (even if they are not necessarily occurring at the same time) and consider at the possibility of MAV. I’m no expert and I don’t know all your details but my own guess is that your symptoms do seem a lot like MAV.

The meds you have tried (fluoxetine and now noritriptyline) are for prevention and will take some time to work. You don’t mention having tried any rescue medications for when you are actually experiencing head pain or acute dizziness. Perhaps it would be worth seeing if a migraine rescue med like sumatriptan helps you. It would also be well worth trying a benzodiazepine as a rescue med.

Apart from your specialist physiotherapist, your medical professionals don’t seem to have diagnosed or be treating possible migraine even though it seems that migraine could be an important feature of what you’re experiencing. If they’re not going to tell you enough then you may have to read up for yourself on managing migraines.

— Begin quote from “caroline1982”

Nearest balance clinic to where I stay is in Leicester. Tried to be referred through NHS but was told this was not an option. Through absolute dispair I ended up travelling to Leicester and paid to have test done privately.

— End quote

I’m very interested in your experiences of getting a balance assessment. I’m currently in the process of trying to get a balance assessment and for me the first step towards is to see an ENT doc in the next few weeks in Nottingham at Queen’s Medical Centre. The neurologists I saw haven’t been as helpful as I’d hoped, so I’m approaching my assessments from the direction of balance rather than migraine even though this is not my preferred approach.

Although I live in the East Mids, I didn’t even know there was a balance clinic in Leicester until you mentioned it! I thought the nearest balance clinic to the East Mids was in Birmingham. I intend to ask my ENT doc to refer me on to a balance clinic after he has done with me and currently I’m doing my homework on which balance clinics I should ask to be sent to. (I suspect the ENT doc may not be up to speed on them). Ideally I would like to get referred to Dr Rosalyn Davies’s balance clinic at the national neurology hospital in London as they have a lot of experience of MAV but I suspect that may be difficult and I might have to go to a more local one.

I’d be interested in hearing more from you about the Leicester balance clinic. Also can you say roughly where you are in the East Mids as it would be interesting to know if you have access to the same local services as I do.

-Wexan

Hello,

Welcome to the board - yes it sounds pretty much like it’s MAV. You probably got the mal de barquement diagnosis due to the onset after travel initially. However changes in air pressure are also a big migraine trigger for some. Since getting this condition many years ago (now mostly controlled with drugs) the one thing guaranteed to set me off is flying in a plane.It is entirely possible that you had a migraine condition lying dormant and the plane set you off. You are now doing the right things - nortriptyline is often one of the first choices of drugs to try with this. There are many - can take a while to find the right one. If you don’t experience too many side effects from a drug it’s often a good idea to stick with it for 6 weeks or so to see if it works.

You said you had a nasty bout of sinusitis 4 weeks ago. Are you sure it was sinusitis - it’s very, very common for migraineurs to think they are having sinus problems when in fact it’s a migraine pain. I experience migraine pain in my sinus area - it’s excruciating. For a long time I used sprays up my nose to combat a supposed sinus problem which never existed. It was migraine all along. The ENT I saw when the pain first started missed this completely.

You probably need to get yourself under the care of a good neurologist who understands this condition. I know of someone excellent in Liverpool if you’re interested. A friend of mine sees him, he’s one of the leaders in the field on the condition. I am seen in the national hospital of neurology in London, but am not keen on the neurologist I am under, even though she does understand the condition. Rosalyn Davies in the neuro otology department in the same hospital, is, however, excellent.

Anyway, hope all that helps. Oh and yes, the condition can vary from one day to the next.

H

Hi Caroline

“To those of you out there who live with this condition my questions are, does this sound like MAV? How long normally does it take for meds to start taking effect? and do you have better days that are then followed by worse days? Today I feel alot more dizzy than yesterday.”

Yes, it all sounds very familiar. You seem to have quite a cross section of synptoms, all of which could fall under the MAV umbrella. I had labrynthitis which kick started my MAV symptoms up to a completely different level, so the doctor who said your initial dizziness could have been started by a virus and triggered MAV could well be right. I also used to experience bouts of sinusitis followed by dizziness, which I now believe were all to do with migraine and MAV.

And I would answer a very definitive yes to the question of whether worse days follow better days. Nearly always, til you get symptoms under control and even then no two days, for me at least, seem to be the same.

I used to live in Nottingham and heard about the Leicester Balance Clinic. I looked into it and found out it wasn’t on the NHS, so never got to go there.

I think the advice you were given about food restrictions (assuming it was similar to the migraine diet), and taking Nortryptiline was spot on. Hope they work for you.

Very best wishes

Brenda

Hi Wexan

I received treatment at the Queen’s Medical Centre in Nottingham. That was some years ago and even then they were pretty up to speed about MAV. Good luck when you see the ENT specialist there.

Brenda

— Begin quote from “Brenda”

I received treatment at the Queen’s Medical Centre in Nottingham. That was some years ago and even then they were pretty up to speed about MAV. Good luck when you see the ENT specialist there.

— End quote

Hello brenda. Do you remember which ENT doc you saw at Queen’s Medical Centre?

I’m due to see a Mr Andrew Marshall but I’m wondering if he has the right specialist interest. I’m seeing him on the NHS but this is his cv from his private practice. http://www.entnottingham.co.uk/

What do you think?

Hi Hannah, Brenda and Wexam,

Thanks for all the advice - really helps. I live in Edinburgh but had to travel South as there were no neurotologist practicing in Scotland 2 years ago! Going private was hugely expensive and in my case the test results didn’t give me many answers. It was my physiotherapist who diagnosed MAV

Cx

Hi there Wexan

It was about 8 years ago that I went to the QMC, so I looked back through my medical notes to see who I saw there. I can only find two names, although I remember seeing an ENT man, an audiologist, a neurologist and a couple of others I can’t recall. The only names I can find now are Dr T Meehan, consultant in Audiological Medicine and Professor G M O’Donoghue, consultant otorhinolaryngolist. After all the tests - and there were a great many - I then saw Dr Meehan every three months for a couple of years. I felt she was very much on the ball and knew her stuff.

I’ve just looked at the CV of the consultant you’re proposing to see. I’m not sure if he was at QMC or not when I was there but he certainly is part of exactly the same department - otorhinolaryngology.

I remember that all the departments put their heads together to come up with a diagnosis, so maybe whatever your entrance point is you will be directed elsewhere if it’s felt necessary.

Sorry I can’t be of more specific help. Good luck!

Brenda

Goodness Caroline! What a distance you had to travel to see someone. Lucky for you you had a savvy physiotherapist and have been started on a suitable regime for MAV. Very best of luck to you in trying to get your symptoms under control.

Brenda

— Begin quote from “Brenda”

Hi there Wexan …The only names I can find now are Dr T Meehan, consultant in Audiological Medicine and Professor G M O’Donoghue, consultant otorhinolaryngolist.

— End quote

Brenda, you’re a real star for looking in your notes for me. Thank you! I looked up the docs you mentioned. There wasn’t much info on Dr Thomasina Meehan. Dr Thomasina Meehan, ENT consultant in Derby | Nuffield Health Although I read something which referred to her as as “audiovestibular physician” and her name came up a the contact person for balance work.

I found some info about Prof Gerard O’Donoghue which looked interesting. http://www.bmihealthcare.co.uk/consultant/consultantdetails?p_name=Gerard-O’Donoghue&p_id=42387 Although he is an ENT doc and not a neuro-otologist he includes in his specialties “Hearing, balance and facial nerve disorders” and Meniere’s disease. Perhaps he is familiar with MAV too? I’m mindful of the opinion expressed by Dr Rosayln Davies in a talk she gave about her Balance Clinic in London that ENT doctors are primarily surgeons and are often not very familiar with MAV; she suggested neuro-otology was the correct specialty.

How well did you find Prof O’Donoghue understood MAV? I would be interested in your views about him.

Hi Wexan,

Sorry for the delay in replying. I’ve had a good read of the links you sent about the two doctors. Interesting. I recognised Dr Meehan’s photo straightaway but in all honesty I can’t say I remember Prof Donoghue at all, so it’s difficult to have a view about him. I obviously did see him at QMC according to my medical notes but I have no memory of him in particular. It may have been right at the start of my visits there when I was having all the tests and wasn’t in great shape and didn’t take much in! I assume at some point, after coming up negative on all the tests (otoscopy, examination of cranial nerves, posturography, ENG, CT scan, audiovestibular et al) I was passed over from his department to Dr Meehan’s as she ran the headache/vertigo clinic. I’m sorry I can’t remember anything else about him.

Regarding their two profiles, I personally would veer towards Dr Meehan as she has a personal interest in vertigo and specialises in management of balance disorders and is a neuro-otologist, as well as a consultant vestibular physician. But I think I got to see her via the ENT department - as I said, they seemed to work in tandem.

Just for your information my sessions with Dr Meehan consisted of a chat for about twenty minutes or so when I gave her an update and she asked me some very pertinent questions about exactly what my headaches and vertigo were like and then prescribed various exercises and meds over the course of a couple of years. MAV wasn’t so recognised back then as it is now but I think nevertheless she had a very good handle on it. She even recommended me a brilliant paper on MAV to read which I’ve since seen acknowledged as quite an interesting and important piece of research. I think the Dr who co-wrote it once worked at QMC. I can only recall now that her name began with K, no more unfortunately.

Anyway, I’m rambling a bit. I can only talk from my own experience, and I know you have your own particular issues you wish to address, so maybe Dr Meehan won’t be for you and Prof Donoghue might suit you better. Maybe they have someone new there now, I really don’t know, not having lived in Nottingham now for some years. It IS difficult trying to find someone who really understands and will go that extra mile to help find an individual, tailor-made solution.

I wish you the very best of luck in doing so Wexan, whether In Nottingham, Leicester or London or wherever.

Brenda

— Begin quote from “Brenda”

Hi Wexan, Sorry for the delay in replying. I’ve had a good read of the links you sent about the two doctors. Interesting. I recognised Dr Meehan’s photo straightaway but in all honesty I can’t say I remember Prof Donoghue at all

— End quote

Hello Brenda, thank you very much for taking the time to give me feedback.

What you have written is very useful and I appreciate it!

-Wexan