Ok so thought I would post a detailed report of my appointment with Dr S for the benefit of everyone here who has not been able to see him yet, either through money or travel constraints and also for those who want to remind themselves of his wonderful advice. If it wasn't for this forum I probably still would not have any idea I have MAV.
I spent over an hour with Dr Surenthiran. He had read some of my prior history and then asked me his own questions. The diagnosis he confirmed as migraine variant balance disorder. He had plenty of analogies to describe the way it works. The basis of it is that a part of my brain within the brain stem is irritable. This part of the brain evolved millions and millions of years ago and controls balance which is a very primitive function. When balance is disturbed the brain reads this as 'danger' which triggers the fight or flight response and goes into a chronic state of red alert hence the panic attacks and anxiety I experienced worst at the beginning. The usual processes of keeping balanced via the inner ear, eyes and muscles no longer work in sync with each other and the functioning of balance, which in a normal person is automatic, now require a lot more effort from the brain. He likened it to an automatic car which has now switched to manual.
He said to imagine the brain as a jug. Most normal people have a jug that is say one third or half full. My 'jug' is full to the brim and any small things added to that make it overflow. There are any number of potential triggers and factors which can cause my jug to overflow. Therefore we need to try and reduce the risk of overspill by a number of measures. These include the migraine diet and lifestyle changes, simple VRT exercises to re-set the brain and medication. He has told me we have plenty of scope to increase the nortriptyline which has been helping me. He said once I reach a level where things are stabilising then to stop increasing the dose. I mentioned the other medications that the other neurologist suggested and he said he prefers to keep things simple, so it is best to get the full benefit of nortriptyline and then later on it may be an option to add something else but we will cross that bridge when we come to it.
The brain he said is like a computer with RAM memory. In a healthy person the brain has plenty of free memory space available but in my brain a lot of this space is now being used in the effort to keep me balanced, this can lead to chronic tiredness. My brain can no longer trust the brainstem messages for balance information so it starts to rely on visual information. The input does not all tally like it should and you get the disequilibrium and feeling of false motion or sometimes a lag in what you percieve as you turn your head. The brain struggles to cope with doing several things at a time, eg talking to several people, walking and talking, busy environments, all of which previously could have been handled automatically by the brain. It will try to compensate and fix the problem but then every time it makes some headway an exacerbation will undo the work, a bit like a house built on sand foundations.
He pointed out that he has seen thousands of people with the very same symptoms as me. He has been able to help all but 5 of them improve significantly and by and large get their lives back. People travel from other countries to see him. He said the vast majority of people with this condition have been under undue or chronic stress in the 18-24 months prior to its onset. He pointed out the separate parts of the brain affected by classic migraine, eg headaches due to dilated blood veseels. Also the cortex which is what is affected by the visual migraine auras I get occasionally and the balance centre in the brainstem which is what is being affected now. He said these things happen for a reason and when the brain is constantly being exposed it things it doesn't like then it cannot talk to you and make you stop so it manifests in illness which forces you to stop and take notice.
My neck pain is due to sensitivity from the blood vessels of the brain and also because when your balance is distrubed your brain reacts by causing spasms in the neck muscles to encourage you to keep your head as still as possible because the brain does not like the signals it is reading. He talked about frequent exacerbations whereby somedays you may get away with doing more than others depending on the threshold of the jug. I asked about hayfever and he said it is another thing that can cause an exacerbation, like a cold or any other trigger.
I told him what happened with the wedding and he said the exertion of going along with the anxiety and guilt afterwards for not being able to go to the whole wedding would have caused the vertigo, which is just another manifestation of the same problem.
He said many people by the time they see him have lost their jobs, sometimes their homes and they are in a trap of beating themselves up mentally because they don't understand what is wrong, they start to blame themselves and they start to feel it is all in their heads. He said it is important to realise there is something physically wrong that is causing all this. But to leave this burden behind at the door today and move forward towards healing. He said you have to be kind to yourself because your threshold for handling stress has lowered as the jug has filled. Things that are easily handled when you are well are now much harder because your resilience has weakened through being ill.
The diet and lifestyle measures are to AVOID the following:
The 6 C's
- Cheese and other dairy products including yoghurt, fresh cream, sour cream and buttermilk
- Caffeine - therefore coffee, tea, coke
- Chocolate - including chocolate biscuits, cakes and drinks
- Chinese food - and any other food containing MSG
- Citrus food - oranges, grapefruits, tangerines, clementines, lemons, limes (and pineapple and bananas)
- Chianti and any other red wines, certain other alcoholic beverages
Also fresh bread with high levels of yeast
- Regular sleep
- Regular meals
- No undue exertion/exercise
- Avoid stress
He said he cannot specifiy a timescale for recovery as everyone is different but obviously his statistics show that the majority of people do signficantly improve with the measures above. He also said that understanding all this can have a big positive impact too. Many people have been endlessly searching trying to put the pieces of the jigsaw together.
He will write to my GP and ask for me to be transferred to him on the NHS for any follow-ups so I don't have to pay privately in the future.
So there you have it, I should have seen him long ago. Even though there is not a magic cure and it's probably something I have to manage for the rest of my life, at least someone in the medical profession understands what this is and I can officially join all the other MAV sufferers who I have found here on this wonderful forum.
I hope this helps people x