Hi. My new meds have not worked. I had to wait to take them due to other health problems/ fight with the Doctors/ wrong dosage, you name it. There were two top up medications on Dr Sās letter. One of them I canāt take now as I have high blood pressure.
Hi. If Medway is in Kent then yes we have the same one. I saw a Physio last time round. When I saw Dr S and showed him the exercises I was doing he told me that two of them were a definite no-no and that the others wouldnāt do any harm. I said itās harming my purse having to get a taxi there and back if theyāre not what he would recommend! Did the physio help you at all?
Hi. Couldnāt help but feel I must chip in as it looks like you are contemplating VRT. I was very interested to note Dr Sās comments on the exercises youād been given, and also very surprised his set-up doesnāt appear by inference to be more integrated. It does however give you a clue maybe to some of the difficulties that can occur with VRT. You donāt want to be doing the wrong exercises. Iām not a medical person, just somebody who has had MAV a very long time with some exp of VRT so my comments are all very much IMHO.
Have you thought about discussing the other ātop up medicationsā Dr S listed with your GP to see if they might be options for you to try. If that doesnāt work out, maybe you can get a message to DR S via his secretary to suggest a further prevenative. Dr S is the MAV expert so you were quite lucky to be able to get to see him, and also very wise to quiz him about those exercises. What an opportunity. As a person still researching VRT Iād be interested to know which exercises he āno-noād (if indeed there is such a word!). I might then be able to work out why.
The jury may well still be out on how effective VRT is for MAV but I think the general consensus of opinion is that itās unlikely to help unstable MAV, i.e. MAV not already under control. VRT is supposed to make the brain compensate and it struggles to do so with unstable MAV which is a fluctuating condition. Might therefore be better to first look at other drugs to bring your condition under control. From reading it appears to me that VRT might help better further down the line. On this forum somewhere you will find āIslaās storyā, itās a success story, well written and well worth reading. It also explains the role of VRT in MAV much more eloquently than I appear to be doing here today!
Try not to make the mistake of thinking āwell itās only exercises, exercises cannot hurt meā. Er, they might. They can. They certainly did me. For me, apart from anything else, they proved too much, too soon.
Iām UK based, too far away to have the benefit of Dr S however and although Iāve seen two neurologists, one of them a migraine specialist, Iāve only ever been two MAV management tips : ākeep fitā and āyou must go for a walk outside every dayā.
Have you thought about walking. It certainly wonāt harm your purse. Itās cheap. It should lift your spirits and help keep you fit. And itās supposed to help compensation (the migraine specialist words this, not mine). Iāve found walking also helps that āout of kilterā, ācentre of gravity isnāt in the right placeā feeling, too.
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Hi Gail,
My phsyio is on hold at the moment due to the MAV not being under control. Onandon03ās message was a good read as thatās what I was told by the physio. Im seeing Dr S in June now instead of July to discuss my meds as Iām having flare ups on a regular basis.
Iāve started seeing a herbalist now. Iāll update you once I have anything to report.
Iām taking a medicine which has a cocktail of herbs for migraines and to control stress levels which I think are alot of my problem. Iāve been taking it nearly 3 weeks and think iāve noticed a difference in my stress levels so only time will tell
I am very curious to know this as well. I had a physio session recently for neck ache and this made me have a massive relapse.
Hi. There were two top up meds. Iām on Pizotifen as a top up. The other one begins with V and canāt take it because since he wrote the letter Iāve been diagnosed with high blood pressure. I also have SVT so even without the blood pressure Iām pretty sure I wouldnāt have been able to take it in any case. Iām going to give the Pizotifen a bit longer and then contact Dr Sās secretary. Iāve always assumed that trying the two top up meds was the end of the line. Either way, he needs to know Iām no better. In relation to the physio, it was in 2011 so itās hard to remember. However I definitely remember him saying donāt do the āfigure of eightā. I only walk if I have to (Tesco Express, Doctors, Chemist etc). I hate the fact itās such hard work and I walk like Iām drunk. It makes me paranoid.
Hi. I remember Dr S telling me way back in 2011 that stress wasnāt good for MAV. Last time I spoke to him (telephone consultations as I am unable to get to either Kent or Blackheath), I was in absolute pieces due to a close friend moving without telling me. Iād spent a fortnight bursting into tears wherever I went and unfortunately it happened whilst I was talking to him. He said even with the best diet and the best medication, you will not get better when you are like this. I get stressed very easily. Thankfully I also put my logical head on and try and solve whatever it is. Itās not always possible of course. I never get the migraine. It must stop just short of it. I hope the herbs continue to improve your stress levels. Best of luck.
Neck ache: I complained of this to my SO every day for years and years. Always rubbing Deep Heat into it, I used to be. And it can be so uncomfortable in bed and stop you sleeping. Then it would get worse and worse if you tried to turn your head whilst in conversation and the more people you were trying to talk with, the worse it got. You have my sympathy. I was told years and years ago by somebody, a medical person of some sort, to never let anyone manipulate your neck and I never have since. So it was a case of just suffering, though not in silence Iām afraid. Rarely get it now.
Do you have something wrong with your neck. After a few years I came to the conclusion (a) sometimes itās part of the MAV symptoms straight, part of the tension that causes the migraine and/or (b) because you have active MAV symptoms they are affecting your posture because of your balance being less than perfect and although necks are actually very strong (they have to be to hold that heavy head in place), you feel the discomfort in the neck. So basically IMHO the MAV is giving you the neck ache. And itās miserable!
One exercises I remember doing in VRT involved marching up and down turning your head 90 degrees left and right alternately with each step. That really did result in some serious neck ache. Before doing any VRT you are supposed to do a warm up exercises to release tension in the neck because working against a tight neck means VRT wonāt work. Although I am good at relaxing most muscles (from Tai Chi and relaxation) I never managed to fully release my neck muscles until the meds were well on their way to controlling the MAV.
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I dont do chiropractors. This was a physio dude who hit the trigger points in my neck. Neck pain disappeared MAV is back 
We never have a boring moment in the MAV world.
My 10 cents, FWIW:
- Stiff neck comes from brain trying to better fix position of ears and eyes due to vestibular deficit.
Physio:
Generally bad idea for two reasons, IMHO (you know my view on CSF pressure interaction):
- Reclining during day is bad idea, and you should never go totally horizontal (even at night), always keep your head up to keep CSF pressure off your ears.
- Worse, if someone is applying significant pressure to your neck, goodness knows what thatās doing to head CSF pressure, which as Iāve said before will put pressure on your ears. If one or other is hydropic that pressure will be communicated and upset them. Itās a bit like the way mine used to get worse when going on haunches (this doesnāt happen anymore as my hydrops pressure has fallen I suspect - lack of vertigo these days is another indicator of this).
Were you lying down or sitting down?
Agreed: never a dull moment us MAVers!
Agreed: chiropractors should carry a Government Health Warning!
Yr neck pain gone. i know exactly where it went. Iāve got it. Got that feeling in bed last night in bed
that my neck was rather too long to cope with, like a giraffeās, couldnāt get comfortable to sleep and then woke up with your stiff neck obviously. Only the second time this year so I shouldnāt really complain. Why in the heck not. Itās just so frustrating.
Thanks, you reminded me of the bit Iād omitted. Iād probably have said the stiff neck comes from the imbalance caused by the MAV affecting where your head is in relation to your spine which means it makes it harder for yr neck to carry the immense weight of your head. I didnāt think this one up for myself. Itās a core Alexander Technique principle I picked up in classes a couple of years ago.
IMHO with MAV there are so many knock-on effects, itās a wonder any of us are walking about on two legs at all. May the miracle continue to happen, please.
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.He did both had me lie down as well as sit down.
In any case it sucks, sorry you are experiencing some worsening. As always though ā¦ you will climb out!
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Itās a shame you canāt get to see him but a great alternative to speak to him on the phone and it was only reading the message yesterday thatās where Dr Sās expertise, so thatās a comfort if nothing else.
I donāt think ive been officially told that about the stress being a big factor, but as with us all, when researching MAV it does say that. My body too doesnt take to kindly to stress even if itās not obvious on the surface that im stressed. Iām quite lucky on the work front with that as my manager is really supportive and helps to keep the work stress to a minimum. That mustāve been aweful what your friend put you through 
Would you be able to send me the link for what you mentioned about reading āIsabelles storyā as iām not sure where to find it.
Thanks
Hi Helen,
"isabelles story " not sure it rings bells for me.
Could you refering to Islaās story ? Link below
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Thatās the one. Atleast you know what I was talking about lol. Thanks
That story is featured in the Positivity Category
Back again, three months after I last posted. Iāve totally failed doing the migraine diet. I couldnāt do it not even for a day! I have BED (Binge Eating Disorder) which makes it harder than it would be normally. The idea was to do the diet for two weeks to prove/ disprove whether eliminating certain foods would have any effect on my Vertigo. Iāve had to bite the bullet and contact Dr Surenthiranās PA to arrange a telephone consultation. Iāve been waiting a week and as yet have no been contacted with a date. Iām hoping Iām given enough notice to be able to attempt the diet before the consultation. It just might focus me enough to do it. I need to know if thereās any medication left to try. I doubt it, but we will seeā¦
Hi
Iād phone again Dr Sās office and chase that telephone appointment. Just read yr first post. You wondered why Dr S hasnāt tried you on Propranolol. Never met him but Iāve read heās told several on this forum heās not a fan of Propranolol. Remember to look/sound surprised if he tells you that too pls.
Sorry to hear of yr problems. Thatās the trouble with modern health systems. They arenāt holistic. Donāt understand BED but it would be so much more helpful to patients if when one has several conditions at once the two specialists could confer to come up with a plan.