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 S’s letter. One of them I can’t 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 wouldn’t do any harm. I said it’s harming my purse having to get a taxi there and back if they’re not what he would recommend! Did the physio help you at all?
Hi. Couldn’t help but feel I must chip in as it looks like you are contemplating VRT. I was very interested to note Dr S’s comments on the exercises you’d been given, and also very surprised his set-up doesn’t 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 don’t want to be doing the wrong exercises. I’m 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 ‘top up medications’ Dr S listed with your GP to see if they might be options for you to try. If that doesn’t 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 I’d be interested to know which exercises he ‘no-no’d (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 it’s 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 ‘Isla’s story’, it’s 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 ‘well it’s only exercises, exercises cannot hurt me’. Er, they might. They can. They certainly did me. For me, apart from anything else, they proved too much, too soon.
I’m UK based, too far away to have the benefit of Dr S however and although I’ve seen two neurologists, one of them a migraine specialist, I’ve only ever been two MAV management tips : ‘keep fit’ and ‘you must go for a walk outside every day’.
Have you thought about walking. It certainly won’t harm your purse. It’s cheap. It should lift your spirits and help keep you fit. And it’s supposed to help compensation (the migraine specialist words this, not mine). I’ve found walking also helps that ‘out of kilter’, ‘centre of gravity isn’t in the right place’ feeling, too.
My phsyio is on hold at the moment due to the MAV not being under control. Onandon03’s message was a good read as that’s what I was told by the physio. Im seeing Dr S in June now instead of July to discuss my meds as I’m having flare ups on a regular basis.
I’ve started seeing a herbalist now. I’ll update you once I have anything to report.
I’m taking a medicine which has a cocktail of herbs for migraines and to control stress levels which I think are alot of my problem. I’ve been taking it nearly 3 weeks and think i’ve 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. I’m on Pizotifen as a top up. The other one begins with V and can’t take it because since he wrote the letter I’ve been diagnosed with high blood pressure. I also have SVT so even without the blood pressure I’m pretty sure I wouldn’t have been able to take it in any case. I’m going to give the Pizotifen a bit longer and then contact Dr S’s secretary. I’ve always assumed that trying the two top up meds was the end of the line. Either way, he needs to know I’m no better. In relation to the physio, it was in 2011 so it’s hard to remember. However I definitely remember him saying don’t do the “figure of eight”. I only walk if I have to (Tesco Express, Doctors, Chemist etc). I hate the fact it’s such hard work and I walk like I’m drunk. It makes me paranoid.
Hi. I remember Dr S telling me way back in 2011 that stress wasn’t 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. I’d 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. It’s 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 I’m afraid. Rarely get it now.
Do you have something wrong with your neck. After a few years I came to the conclusion (a) sometimes it’s 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 it’s 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 won’t 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.
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.
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 that’s doing to head CSF pressure, which as I’ve said before will put pressure on your ears. If one or other is hydropic that pressure will be communicated and upset them. It’s a bit like the way mine used to get worse when going on haunches (this doesn’t 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. I’ve got it. Got that feeling in bed last night in bed
that my neck was rather too long to cope with, like a giraffe’s, couldn’t get comfortable to sleep and then woke up with your stiff neck obviously. Only the second time this year so I shouldn’t really complain. Why in the heck not. It’s just so frustrating.
Thanks, you reminded me of the bit I’d omitted. I’d 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 didn’t think this one up for myself. It’s 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, it’s a wonder any of us are walking about on two legs at all. May the miracle continue to happen, please.
.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 … you will climb out!
It’s a shame you can’t get to see him but a great alternative to speak to him on the phone and it was only reading the message yesterday that’s where Dr S’s expertise, so that’s a comfort if nothing else.
I don’t 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 it’s not obvious on the surface that im stressed. I’m 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 must’ve been aweful what your friend put you through
Would you be able to send me the link for what you mentioned about reading ‘Isabelles story’ as i’m not sure where to find it.
"isabelles story " not sure it rings bells for me.
Could you refering to Isla’s story ? Link below
That’s the one. Atleast you know what I was talking about lol. Thanks
That story is featured in the Positivity Category