UK MAV study

Just thought I would update about this, as I know several of us on this site are involved in this/would like to be.

I had a phonecall from Dr Murdin today about the study. Went through all my symptoms/tests I had done etc. But unfortunately I’m not eligible to take part as I don’t meet the strict criteria for a MAV diagnosis that the study has set. Dr Murdin said that I am not a definite diagnosis, mainly because of my pattern of having lots of headaches migraines that seem to be entirely separate from my balance issues (i.e. when I have headaches/auras I don’t get imbalance or vertigo, and when I’ve had terrible vertigo I’ve not had headaches or any other migraine aura or symptom). She said that in her opinion I fall into the grey area, where they can’t really be sure what is wrong with me, but it could be MAV possibly. To be honest, I am not at all surprised to hear this, as I think there are so many overlapping symptoms with other balance problems, and so much still unknown about these conditions it’s almost impossible to have a 100% definitive diagnosis unless you are an absolute textbook case of something.

Slightly disappointed to not be able to take part, but I hope lots of the rest of you can.

Scott - can I still hang around even if I’m ‘possible MAV’ rather than definite?? :roll:

Hi there - I am sorry that you can’t particpate. Its so frustrating that there is so much gray around this…

I am a bit surprised though as I have read alot - even from articles my neuro has printed for me - that with vertigo/dizziness/balance issues in MAV can and often are completely separate from the classic migraine. In my case i don’t even get headache - only aura (visual, numbness and speech).

Hang in there!

Alli

Interesting- I don’t get headaches with pain or auras either. My dizzy attacks will just hit out of nowhere (spinning rotational vertigo.) But, since being on Topamax, I haven’t had one since.

Just trying to figure out the 24/7 dizziness now…

— Begin quote from “beechleaf”

But unfortunately I’m not eligible to take part as I don’t meet the strict criteria for a MAV diagnosis that the study has set. Dr Murdin said that I am not a definite diagnosis, mainly because of my pattern of having lots of headaches migraines that seem to be entirely separate from my balance issues (i.e. when I have headaches/auras I don’t get imbalance or vertigo, and when I’ve had terrible vertigo I’ve not had headaches or any other migraine aura or symptom.

— End quote

Are you serious? I’m sorry to say but the good doctor has not ben reading the literature and does not understand MAV. This is a worry when you consider he may be the prof behind the study. One of the hallmarks of this disease when it shows its ugly head as MAV is to have headache and dizziness occurring SEPARATELY. This is the “normal” way MAV works in many people. I get it this way and have for 8 years now. Rarely do I have dizziness and a headache if ever.

Beech, if you feel like disputing his remarks let me know and we can swamp him with some literature. He needs some MAV education. It’s a bit like trying to tell you that you get a runny nose with a cold and therefore you’re not eligible. :roll:

Scott 8)

I’m a bit stumped too. Because I was told I’m eligible to do the study even though I told Dr Murdin I never get my headache and vertigo simultaneously. Very strange.

Brenda

Thanks everyone.

Scott, yes I’m baffled, and even more so now Brenda has just said she was accepted for the study even though she seems to be saying the same thing as me! Brenda - did you speak to Dr Murdin, or someone else on her research project? The only possible explanation seems that we spoke to different people who aren’t consistently applying the same criteria.

Sounds like a great study so far! It’s already confounded by the selection criteria. Maybe you should call back Beech and ask them what they’re doing!

S

Beech, I definitely spoke to Dr Louisa Murdin. I asked her her name specifically so that I’d know who I’d dealt with. I’ve been thinking about the apparent contradiction here and I wonder whether it was because I said that when I get a vertigo attack that puts me in bed for at least 24 hours it is inevitably followed a day or so afterwards with a sinus type headache for a week or so. Perhaps that’s simultaneous enough for her (!), even though I have never ever considered myself that my vertigo runs alongside an acute migraine headache. She asked me that specific question, to which I replied a definitive ‘No’.

Brenda

So they might only be looking for a link between vertigo/dizziness and headache!!??
How disappointing - what about all of us who suffer with 24/7 dizziness without simultaneous headache…!!!
This doesn’t sound very promising :frowning:
Tony.

According to the blurb I was sent it’s a study “to teach us more about migraine and the dizziness which many people experience in relation to their migraine, and whether there is an inherited suseptibility to this condition. Previous studies have shown there is a link between a particular gene (PGR) and a form of migraine in which individuals experience dizziness. We would like to explore this further… We are inviting people with migraine and dizziness symptoms to take part…”

It goes on to say they will only take people who suffer from the “right kind of migraine.”

Brenda

Thanks Brenda, I think you are right in that because you mentioned some kind of headache alongside your vertigo, she has taken that as being different to my situation. And it does sound like they are looking at ‘normal’ migraines that have dizziness/vertigo as a feature of them, rather than the (correct) definition of MAV, which is that the headache doesn’t have to co-exist at all. It’s a shame they’ve gone along this criteria as they are missing out on a large cohort of people with MAV. I don’t really see why they didn’t get as many subjects as possible, and then perhaps classify them into groups for the symptoms they have. It would be interesting to see whether the gene for the progesterone receptor was different in particular groups of us, and perhaps that could explain some of the variability in symptoms etc. But I guess they are wanting to keep things simpler at this stage.

— Begin quote from “TeeCee”

So they might only be looking for a link between vertigo/dizziness and headache!!??
How disappointing - what about all of us who suffer with 24/7 dizziness without simultaneous headache…!!!
This doesn’t sound very promising :frowning:
Tony.

— End quote

Yeah, they’re not going to want you either then Tony. We are the MAV study rejects :lol:

— Begin quote from “beechleaf”

— Begin quote from “TeeCee”

So they might only be looking for a link between vertigo/dizziness and headache!!??
How disappointing - what about all of us who suffer with 24/7 dizziness without simultaneous headache…!!!
This doesn’t sound very promising :frowning:
Tony.

— End quote

Yeah, they’re not going to want you either then Tony. We are the MAV study rejects :lol:

— End quote

Pah - let’s do our own study, beechleaf…and people with headaches aren’t invited! :lol:

Hi all,

a quick update. So, I just got a call and it looks like they ARE interested and want me to take part, despite me emphasising the fact that I don’t get headaches! It seems that they are more concerned with being sure that you definitely, unambigously, have migraine. They seemed interested in the nagging neck ache/pain that I used to get, and the fact that this extended up into the base of the skull, along with an occassional ‘pounding’ head I’d get when I’d sometimes climbed a flight of stairs, and the ‘blind-spot’ aura that I had once. All this, and the fact that I could often sense a ‘tightening’ feeling in the head, along with heightened ‘activity’, like a tingling/buzzing, and worsened dizziness during these periods, seemed to satisfy the criteria for being recognised as ‘migraine’…

Best wishes to all,
Tony.

Ah, well the difference between us, Tony, is that you have migraine symptoms (though not of a headache variety) whilst having dizziness. I definitely have migraines (auras, headaches) but not simultaneously with the dizziness.

So, it’s just me in the not-allowed-in-the-study-club now then :lol:

Are they still looking for more people? I find it so interesting as I was working as a genetic scientist before I got so I’ll again. My grandma was written off as being mad because she said she was dizzy all the time. She actually died after falling down some stairs. It’s only now that I have been diagnosed that she may have had mav and that’s where I inherited it from.

— Begin quote from “beechleaf”

Ah, well the difference between us, Tony, is that you have migraine symptoms (though not of a headache variety) whilst having dizziness. I definitely have migraines (auras, headaches) but not simultaneously with the dizziness.

So, it’s just me in the not-allowed-in-the-study-club now then :lol:

— End quote

Hi beechleaf - I see; subtle (or perhaps not so subtle!) difference. So, do you have no other recognisable migraine traits when you’re dizzy, at all? And no dizziness when you’re having auras? That is interesting…

As for being a member of this club, well…let’s be honest…it’s not a club that many people will be sad about being refused entry to! Not like a ‘Ferrari-Owners’ club, or a ‘Super-Hero-Type-Powers’ club! :lol:

— Begin quote from “Becks”

Are they still looking for more people? I find it so interesting as I was working as a genetic scientist before I got so I’ll again. My grandma was written off as being mad because she said she was dizzy all the time. She actually died after falling down some stairs. It’s only now that I have been diagnosed that she may have had mav and that’s where I inherited it from.

— End quote

Hi Becks - sorry to hear that - that’s very sad :frowning:
I know that they were pretty much inundated - not sure if they’re still looking for people, but I guess if they’re being picky about who they accept then they could still be short of numbers…?! I had all but given-up/forgotten about it, to be honest.