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#1

Hi all
i have been dizzy now for 6 months and my Doc thinks i have a migraine Variant (MAV)
I am currently seeing DR Surenthiran in the UK. Am i in safe hands is the best person to see?
i have bought the heal your headache book and have been following the migraine diet now for around 3 months
i am currently on Lyrica. 100mg 3 times a day
Nothing seems to be happening and i don’t feel like I am getting better, I can’t see the light at the end of the tunnel and have had enough of it
Any advice or tips?

:cry:


#2

First of all, I’m sorry to hear that you have MAV, but welcome to this forum. You will find a lot of great information here about this condition that will help you tremendously and excellent support which you will need throughout this process. What I would first recommend is reading the **10 Commandments **at the Top of this page. It was just recently written and really has some fantastic advice. I wish this was here when I was first diagnosed with MAV back in February of 2012.

I have head of that Dr on this forum and have not seen him personally but I know a lot of people in the UK have seen him and I’m sure some will answer here and give you their opinion. I believe I have heard he is a good dr for this illness. Please know that there is light at the end of the tunnel and eventually you will find the right med or the right combination of meds that will get you back to feeling normal or at least a lot closer to normal than you are right now. What I would recommend is to read some of the success stories on here. When I was at my lowest point, that is what I did to help with my feeling of hopelessness. I was bedridden and so depressed and literally felt like I was dying. Than I finally got a diagnosis and found this forum. You are lucky that got a diagnosis so early and also found this forum. Here are my biggest peices of advice… Start a medication treatment plan with your Dr and don’t read all the hype about the side effects because that will just scare you etc etc. Give each medication a fair amount of time to see if it works. Just try to be strong and endure the side effects until they wear off unless of course they are lasting longer than a couple weeks or are of concern. Also, just trust your diagnosis and don’t spend too much time on the internet trying to find other causes because it will just drive you crazy. This forum really has the best resources for all you need to know about this condition. Scott has spent sooo much time and there is everything you will ever need to know right here. And best of all, when you are down, you can ask for support, and we are all here and we all understand. Many of us are coping with the same crap of have dealt with it at some time and have gotten better. Above all, do what you can to keep your emotional state of mind strong because that will be the hardest struggle while you are trying to get better. And lastly, never ever give up because you can and will get better. It took me a few different medications but I finally found effexor and am at 80-90% on most days. I am currently coming off of topamax so I’m not feeling good right now, but once that is out of my stystem, hopefully I’ll be back. I was in very very bad shape and have been on medical leave from work for almost a year now. Effexor took a very long time to work so that’s why I say, please give it time.

Hang in there… when is your Appt with DR. S?


#3

Great thank you Mavprincess :smiley:

Thanks for the kind words and encorougement

I have seen dr s once already and i have to go back in 3 months


#4

Hey robert, hey mav princess -
I just thought I would drop in to say that I too am under Dr S I have seen him twice (once very briefly) & once more when he diagnosed me. Just google his name & mav & you will see what a star he is!!! I have a lot of faith in him. I have been poorly for a year now, & eventually got diagnosed 5 weeks ago and started meds then. May I ask what was the treatment plan he gave you? I have found this forum a godsend , I really have. Good luck to you! X


#5

Hi Anna

I am seeing him privately

He has got me on lyrica and im still increasing that slowly. I also have to do the diet and sleep and eat regulaly

I am also seeing his pysiotherapist nicola harris

I have to return to him in 3 months time

I am currently on 100 mg 3 times a day


#6

Robert, you are a little ahead of me - I started my drugs plan 5 weeks ago. My drug is nori though - he asked me to go back in 3 months also. I’m guessing this is because this is the earliest we may start to see an improvement. I have also seen n Harris in fact she introduced me to the dr. Has she given you VRT? How you finding the diet? Have you worked out any o your triggers? A x


#7

Anna, yeah it must take 3 months for the meds to work

N Harris has me doing some VRT

I cant find any food triggers but then i have removed all the trigger foods. I have removed all the foods that Dr S suggested the 6 C’s. I have also removed the food triggers that dr. buchholz recomends in heal your headache book

Computers screens make me ten times worse

Have you found any?


#8

What did he say are the 10 c’s? I’m guessing Citrus and Caffeine are on there? But curious what the others are?

Have you noticed any improvement since taking out the triggers?


#9

no i have not noticed any improvement with the diet

Dr S 6 c’s are a way of remembering what you cant eat

  1. Cheese
  2. Caffeine
  3. Chocolate
  4. Chinese food (MSG)
  5. Citrus (+ Pineapple & Banana)
  6. Chianti (red wine)

i have followed this and Dr David Buchholz diet


#10

Robert, our stories are very similar! Yes I too am following Dr S food plan. (haven’t read the book yet though!) I have identified one trigger which is lighting. I think dairy ‘may’ be one for me too. Are you managing to survive (ie work etc) with your condition? A x


#11

Hi Anna,

Read the book its very good

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

i am just about managing to get to work etc but every day is a struggle. I’m finding it very tough!!

I’m dizzy 24/7 with good days and bad.

Dr.S has referred me to see a respiratory physiotherapist as he thinks my breathing is playing a part. I’m a bit confused about this but i am seeing the physio tomorrow so hopefully i will find out more

are you managing to get through each day and work etc?


#12

Hey there,
I am surviving just about! I have a 2 year old & a 1 year old! (I often wonder if this contributed to me getting poorly - 2 babies so close together!). I have a very surportive husband who insists I nap in the day with the babies but I just about manage to survive! You know this all started over a year ago / I almost got better in may then, over the bank holiday in June , I had to rescue my 2 year old from a bouncy castle & bam all the sypmtoms came flooding back with avengence. Out of interest what’s the link with your breathing & this mav monster? I haven’t heard of that before? Are N Harris exercises helping ? How long have you been seeing her ? A x


#13

hi

I was under a lot of stress before all this happened. Then one day I went to Thorpe park for the day and went on all the roller coasters etc. which I’m normally fine with and then that evening BANG!! It all started!!

I have a baby on the way so I’m trying to get better ASAP.

Regarding the breathing I don’t really know to be honest. I think what’s happening is because MAV makes me very anxious this causes my breathing rate to increase which contributes to the dizziness. I’m seeing the breathing person today so hopefully I will find out more

i don’t feel like N Harris exercises are helping yet


#14

Good luck today - let us know how you get on- its very important you get as much rest as possible before baby comes

A x


#15

Hi Anna

apparently i have a problem with my breathing and i hyperventilate. Which playing a part in my dizziness etc

physiohypervent.org/index.php?m=0&i=3

I have to do some exercises and get my breathing back down