Author Topic: MAV  (Read 4417 times)

suzygirl

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MAV
« on: Nov 14 2013, 08:17 PM »
I was wondering what people thought about this.  I have looked at the symptoms, some docs seem to regard it as a real form of migraine, others maybe not.

What are your thoughts?  Anyone got this?  Would you mind sharing your symptoms and treatment.  I have been having awful migraines and nothing worked till the gp gave me some diazepam and it worked.  Not sure why?  Maybe they are connected to my neck?

Thanks

Offline jojo

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Re: MAV
« Reply #1 on: Nov 14 2013, 10:02 PM »
Hello Deb

I certainly feel that my migraines are linked to my Spondylosis. I say this because when my neck is bad I can often go on to get Migraine. I have been suffering from migraine for 6 years now. I have had Menieres for 2 years. So for me the link was the Spondylosis.  Saying that I have had more Migraine since having Menieres.

You may remember that I mentioned before that my doctor said that Menieres Disease and Spondylosis go hand in hand.  I still have not had the chance to ask her more about that.  Will definitely make a note to ask when I go for blood tests in December.

I get dizzy spells associated with my Spondylosis, these last for about 2 to 4 seconds at a time so are very brief and are not rotational.  The Menieres rotational vertigo that I get lasts any where between 6 hours to 2 days.

Initially I was quite confused by what was causing what because I have multiple medical conditions. But, over the years I have learnt to manage them (sort of) so now I roughly know what to expect if any of them flares up badly!!! If that makes any sense!!!

I take Migralieve for Migraine as my doctor feels it is the best medication for me to take.  It certainly works for me and I have not had any problems with taking it. I take Cocodomol for my Spondylosis, this also works for me. I have been down the physio route and it does help but never lasts for long. I also have a neck support collar which also helps but try hard to not wear it as I feel it is important to keep my neck moving as stiffness only makes things worse. I have not tried Diazepam for Migraine so can not comment on using that!

Hope this is some help Debs. I would also be interested in other forum members opinions on this subject.

Take care Jojo x

Offline Dizzy Hoon

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Re: MAV
« Reply #2 on: Nov 15 2013, 10:46 AM »
I dont suffer from migraines but I a few people who do. They have been prescribed a low dose of Amitriptyline (I think 5mg but would have to check that). Amitriptyline in a higer dose is used as an anti-depressant but in lower doses it helps with pain relief.  I dont know exactly how it works with regard to migraines but my friend swears by it.

Offline Giddy

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Re: MAV
« Reply #3 on: Nov 20 2013, 09:13 PM »
Hi! I have been told today that they think I have got this - The Migraine that has no headache. (Believe it or not!) I was not expecting to have been told this - as I went to the Hospital about my bad eyes. :o

suzygirl

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Re: MAV
« Reply #4 on: Nov 20 2013, 10:37 PM »
Thank you all for your replies.  Jojo, I did ask about my neck and they said it won't help but ironically it is more likely my feet and spinal problems that would cause more trouble!

I was on Amitryptyline but stopped as it made me really depressed, feel much better now I don't take it.

Giddy, how do you feel about the news?  I take it you were expecting something else to be the cause?

I am going to be referred to a migraine clinic to determine the type of migraine I get.  So I will be interested to see what that entails.

Offline Giddy

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Re: MAV
« Reply #5 on: Nov 23 2013, 11:10 AM »


Giddy, how do you feel about the news?  I take it you were expecting something else to be the cause?



Hi Deb

I'm not really sure how I feel about the news to be honest! I have been mis-diagnosed so many times that I don't really know anymore. :-\ Hope you find out what is wrong. :)

Offline Giddy

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Re: MAV
« Reply #6 on: Nov 23 2013, 11:22 AM »
I was supposed to have mentioned that if I have got MAV I should be very glad in a way. - At least they can treat it.  :)

Offline Rosemary

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Re: MAV
« Reply #7 on: Jan 30 2014, 07:29 PM »
Hi Debs. At my appointment today - hemiplegic migraines were mentioned from my notes - no headache but they resemble Tia / mini strokes including damage seen on MRI scans to the brain ( they even cause slurred speech)

I already have "normal" migraines

Seems migraines and MD do rub along together nicely and if you have one you are more likely than average to have the other (according to some consultants)

Rosemary x

suzygirl

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Re: MAV
« Reply #8 on: Jan 31 2014, 11:24 AM »
Rosemary, they mentioned this type of migraine to me at my appt.  What meds are they going to try for you?  I am going to be started on Topimate.

Offline Giddy

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Re: MAV
« Reply #9 on: Jan 31 2014, 06:21 PM »

Seems migraines and MD do rub along together nicely and if you have one you are more likely than average to have the other (according to some consultants)



These do rub along together! They suspect my Mum has now got MD and MAV.

Hope your treatment helps you Deb.

I sadly, still don't know what is going on with me  :tired: - MD ruled out, The eye clinic think it is not MAV and that it is Optical migraines. I am waiting to go back to the Neurologist about my MRI scan results.

Offline Rosemary

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Re: MAV
« Reply #10 on: Jan 31 2014, 06:33 PM »
Hi Debs - they are not going to put me on anything for migraines until the results of the L puncture and after them they will then look at medication.  Will let you know if they do and what type and amounts.

Hi Giddy. At my LP appointment I said how frustrating it was not knowing and it said unfortunately in nelogical it was very common (probally in a lot of illnesses) and it could take a long time to work through possible causes and then to get the right treatment/medication types and amounts.

I have a sneaking feeling we are all guinea pigs and they may all be guessing!
::)

Take care x

Offline Rosemary

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Re: MAV
« Reply #11 on: Jan 31 2014, 06:37 PM »
Debs - do you get headaches with your migraines?  Only asking because I do with my "normal" migraines but not with my "stroke" migraines......thanks

suzygirl

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Re: MAV
« Reply #12 on: Feb 01 2014, 04:38 PM »
Snap Rosemary, I get migraines but I also get 'stroke' type symptoms which could be hemiplegic migraine.  Watch and wait to see if the migraine meds help.

Giddy, sorry you are no further forward.  I had never heard of optical migraines.

Offline Giddy

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Re: MAV
« Reply #13 on: Feb 14 2014, 10:17 AM »


Giddy, sorry you are no further forward.

Hope you are both feeling a bit better now.  :) Is your new medication working Deb? Thank you for understanding - I feel so  :tired: about not knowing what I have got. It pulls you down. Optical migraines are "sort of" like MAV.

I agree with Rosemary - I also think we are all Guinea pigs and they may all be guessing.

I'm off to Hospital next week about my Brain MRI. So "hoping" we may find something out.

suzygirl

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Re: MAV
« Reply #14 on: Feb 14 2014, 10:27 PM »
I hope your appt goes ok Giddy.  My meds have had no real effect yet, but I am only at the starting dose and was told it could take up to 3 months to work.

Let us know how you get on.

Offline Giddy

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Re: MAV
« Reply #15 on: Feb 19 2014, 05:10 PM »
Hi All

Thank you for hoping that I get on ok with my appointment Deb. Sorry, to hear you are still waiting for your meds to work. Hope that they hurry up and work soon. :)

Oh, my word I cannot believe I went to the Hospital and have now come out with a name!  :o I am in shock. They said that I have got Vestibulopathy. I will have to have a read up about it as I have never heard of it. The Neurologist has given me something for my Optical Migraines as well.

Offline Jane_Jig

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Re: MAV
« Reply #16 on: Feb 26 2014, 10:50 AM »
Well, the latest guess from my audiologist is vestibular migraine. I was prescribed 5mg Amitriptyline. It ruined the entire following day. I've never had a day when I was wobbling the whole day. Normally I have some periods of normality. I didn't take a second tablet. Seeing GP today to discuss.

The NHS is so bloody slow. There is no alacrity in anything they do. I suspect it's to do with limited funding.

suzygirl

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Re: MAV
« Reply #17 on: Feb 26 2014, 05:44 PM »
Unfortunately it does tend to be trial and error with meds.  Lets hope the next one works better.

Offline Jane_Jig

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Re: MAV
« Reply #18 on: Mar 08 2014, 11:44 AM »
I am going for a second opinion of my condition(s). I'm currently on no meds at all. Hoping the appointment is not too far in the future.

Offline Giddy

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Re: MAV
« Reply #19 on: Apr 01 2014, 01:56 PM »
I don't blame you Jane_Jig. Hope you get some help soon :)