The Vestibular Migraine Community

Appointment with Dr Surenthiran


#1

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

  1. Cheese and other dairy products including yoghurt, fresh cream, sour cream and buttermilk
  2. Caffeine - therefore coffee, tea, coke
  3. Chocolate - including chocolate biscuits, cakes and drinks
  4. Chinese food - and any other food containing MSG
  5. Citrus food - oranges, grapefruits, tangerines, clementines, lemons, limes (and pineapple and bananas)
  6. Chianti and any other red wines, certain other alcoholic beverages

Also fresh bread with high levels of yeast
and Marmite

  • 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


#2

nice post Jem. i am glad your feeling positive and got some answers!!

some great info :smiley:


#3

He sounds amazing Jemma!


#4

What a fantastic post! I am amazed you could remember all this info. You are one bright lady! What is the plan, is he going to increase your nori? On a positive note I ran my 10K race on sunday and ran without stopping for 1hour and 5 min. I took meclizine (traveleze pastille) before the race and this helped. When i started running in april i could run for about 3 min and was really dizzy when i stopped. I actually felt ok on sunday when i stopped. It it so unbelievable, before I started prothiaden (a Tricyclic like ami) I was struggling to get out of the house!
Hope you are feeling ok after the travelling XX


#5

Thanks Becks! And so glad you did your run, what an achievement!!! It must feel so good to see such a measurable improvement.

I knew I had to write down as much as I could of what Dr S said before I forget it. That way I can keep reminding myself and others can get help from it too. I think the plan is to keep increasing nori until I reach a stable level. There is the option to add a further med in future although he did not say which one yet. I definitely think nori has helped and I hope it keeps helping. I am a bit grotty today after all the travelling I have to admit but hopefully it will wear off xx


#6

Great post Jem. Thanks for that. Did he say that if u would ever be able to get off meds or will u need to take a preventative med for the rest of your life?


#7

Hi Nabeel

He said the meds and diet are not forever. They are just until we get stable and then can try tapering off slowly. I have a feeling I might need to take something for life but that is just how I feel about me, it is not Dr S’s words x


#8

Me too I think i will always be on something oh well if it means were ok I dont care and Jem Becks is right you did so well remembering what he said my brain goes to mush in those situations lol xx


#9

thanks for that post Jem, makes a lot of sense. Great stuff. Angela


#10

Great information and hope. Thanks:)!


#11

Hi Jem,

Great post thankyou !

Did Dr S mention about whether the diet alone works for many people? This is one thing I am totally unconvinced about.

I have an appointment with him next month so am looking forward to that.

Cheers
Rich


#12

Jem,

Thank you very much for sharing that. I hear such great things about Dr. S. I love that he has such hope for us, and I know his hope is based on experience so it’s very realistic. I wish you well.

Rich - best of luck on your appt!

Lisa


#13

Richy, he didn’t say whether the diet alone would work. I didn’t ask him that either especially as i was already on nortriptyline anyway so I guess I was already going down the meds route anyway. He seemed to imply that it was the combination of the diet, lifestyle, meds and VRT that would lead to eventual recovery. I doubt I would get results from the diet alone. I am sure if you want to try meds he will prescribe one for you. I remember you saying you wanted to try nori or ami. Dr S tends to prescribe nori over ami so it is a likely first choice for him to give you. Good luck and let us know how it goes.

Everyone else, glad the post was helpful to you! x


#14

Great write up Jem. Thanks for taking the time to do it.

Lisa, how are you? Any improvement, however slight? I do hope so. Think of you often.

Brenda


#15

Thank you Jem, for this wonderful post!!

I am going back to work tomorrow, and I will print it out so that bosses, and coworkers can see I am sick, even tho I don’t look it at all!

I really appreciate you taking the time to post it.

Thanks again,

Kathleen


#16

Thank you so much Jem… fantastic post. The analogy of the jug is great. I will use this from now on when I explain to people what is going on with me. This Doctor sounds brilliant. Thanks again.

Kylie


#17

Jem - Thank you so much for sharing all that info - Dr S’s descriptions of MAV are so clear and so easy to relate to and reassuring to know that there are good reasons for all the weird symptoms that we struggle with on a daily basis. I’ll certainly print this off for my family & friends to help them better understand the vagaries of the mav brain!
Scott - This info would be excellent to add to the MAV info on this site.
Barb


#18

Nice one jem ;)! Well done you on listening and taking note so well, when I see him I’m always in a whirlwind!!! Xxx


#19

Thanks for posting this Jem…

Reminds me of everything he said to me on my first appointment a year ago and it’s good to be reminded of it all. I had forgotten a lot of what he’d said and went on my own so great to have it written down.

The main thing I took away from that first appointment was relief that finally a doctor was telling me it wasn’t all in my mind, and that I was going to get better. I cried when I walked out of the hospital, like an idiot, because I was so happy.
I bet those receptionists get a good look of all Dr S’s patients as they leave and think we’re all complete odd balls! :smiley:

How do you feel now??


#20

Thanks everyone. I am glad the post is useful.

MM - I felt a bit tearful in the appt to be honest. It is such a relief when someone understands all the workings of this condition and can tell you why they are happening. It feels like a weight is lifted when you know someone in the medical profession understands.

I wondered if anyone who has seen Dr S knows if/when he writes to your GP? does he do a report with his diagnosis and treatment and does he send it to you or just the GP? I have done a letter to my GP just telling her I saw Dr S privately and asking if they can send me a copy of his letter but not sure if they will…