My name is Leanne, I am a 32 year old nurse here in Vancouver Canada.
I Was SICK SICK SICK SICK with MAV for almost 3 entire years straight.
My life consisted of - being off balance, feeling like I was being pushed to the right or left, holding onto the side of the wall in the shower, feeling like I was going to FALL! I had to lay down the majority of my day, sleeping 12 - 14 hours because I couldnt cope with the horrid sensations, when I closed my eyes - everything was Moving - as if I was on a carousel ride, sleeping with 6 pillows at night… I had to take a leave from my work for many months - as I was not able to work.
The anxiety that this caused was UNBELIEVABLE+++. I would have panic almost daily, as my body would feel like it was about to fall…It was ABSOLUTELY terrifying…
After numerous numerous testings, without any definitive answers…
I had a connection which sent me to Dr.B WESTERBERG (ST PAULS HOSPITAL VANCOUVER BC)
Through him - I was sent to his audiologist
She was a gentle and kind, kind spirited woman, she embraced me and I could feel immediatly that she wanted to help me.
She put me through apx 3 hours of testing and concluded that my balance was very POOR.
She without “officially” diagnosing me - said that she strongly felt I had something called MAV - Based on my history as a child with Severe motion sickness and Severe head pain migraine headaches - in childhood and teenhood into my early adulthood.
(please understand though, that for the past 3 years apx. I had ZERO head pain - just HORRID HORRID vertigo)
She said that I was a “CLASSIC CASE” of MAV - based on my history and how I was presenting.
I want to encourage you if you are reading this, that there is HOPE HOPE
I am 75% better in the last 2 months - I havent felt this good in years
I will tell you what I have done
READ “HEAL YOUR HEADACHE” by David Buchholz - although it doesnt have tons on MAV - it has a section in it which will tell you what NOT to eat for a Migraine Brain
(It may seem overwhelming at first as it was to me, and I was a total skeptic, Im like "you’v got to be kidding me, cutting out yogurt "(for example) how is that going to make a difference???) I was feeling SO HORRID - but within a few weeks I noticed a slight difference - TRUST ME
NO ASPARTAME - I was drinking diet pop- apx 1 medium a day - and chewing gum - Aspartame is a CHEMICAL which most people can handle - but people with a Migraine Brain CANNOT - (just google aspartame and side effects) Although this was very hard for me to understand - I gave it up.
Within 3 weeks of this time apx. I began to walk straight and not have to hold onto walls.
The heart of the matter:
It feels very Unfair, that we have to deal with such hardship… that we would never have imagined for our lives… and that we have a “migraine brain”. But it did.
I missed out on apx 3 years of my life… so I understand…
that being said - I do believe that the Lord can heal this, and I pray ferverantly, that I will be rid of this ailment forever!!!
I would encourage you to do this as well!!!
I want to be there for anyone who is suffering through this Horid Horid ailment -
Please email if you would like any support or have any questions
I will check daily
Take care and God Bless YOU
and remember
YOU WILL GET BETTER
This is only for a season in your life
and You will be stronger for it,
The migraine brain ebs and flows
It will change throughout our lives
Hi Leanne, I’m glad you posted and shared your experience. I’m also glad that you are doing better!
I found aspartame and MSG were really big problems for me and this was long before I knew about MAV. I used to be a Diet Coke addict. Probably 10-15 years ago I started getting horrible shooting pains down my legs in my sleep. No OTC pain relief helped much and I wasn’t ready for prescriptions so when I read about aspartame and “excitotoxins” in general, I decided to give up aspartame. What a difference! The leg pains are completely gone and have never returned.
I often wonder how many people are wandering around with horrible pain, taking muscle relaxers, etc. and not realizing that their problem is aspartame. I know not everyone is sensitive to it and I find that those who aren’t often think I am a bit crazy for thinking it could cause problems. People tell me that if it was such a big problem, it would be taken off the market or there would me more publicity. :? It is a public relations battle for soft drink makers.
Did you ever take any medication to get to the 75% u r at now. Most if not all the people on this forum are on some kind of preventative medicine to help control their symptoms so just wondering did your chronic MAV just go away after following Buchholz diet? Some people are lucky to get relief just by cutting out their food triggers and looks like u r one of them
Glad you are well again by putting into place one of the cornerstones of migraine management – lifestyle modifications which includes the elimination of food triggers where they exist.
Have you needed to take any medicines for this or has lifestyle management been enough to bring you back to your old self?
Hi All!!
Deb - wow, I am sure glad that your leg pains are gone ! ANd I agree with you, in wondering how many people are out there with all sorts of health issues and have no idea that aspartame is causing them. For me, it was definatly a MAV trigger ++.
Nabeed and Scott- Prior to bucholz diet and zero aspartame I tried a low dose of verapamil - I was on it for a short time and felt it was not helping my symptoms at all so I stopped taking it. Then I began bucholz diet - AND within a few weeks started to feel a bit better - then I cut out all aspartame. Within weeks of that I was feeling WAY better. So the only med I am on is Effexor 112.5mg daily which I have been on for apx 7 years (prior to MAV). And am looking into reducing this all together - I would like to know if this is impacting the residual vertigo/dizziness I still get at times. I am apx 75% better, but still struggle here and there, for example, I still get flashing in my rt. eye apx 2 times a week, without headpain, and at those times I will feel vertigo. SO it is still “there”, but SOOOO much better.
Jamie - yes avoid whatever is a trigger - I havent heard much about nutrasweet - and I dont bake with it so I dont know how it would impact me, but if its not right for you, avoid!!!
Take care all!!!
Leanne
I would say that you’re taking a pretty healthy dose of Effexor, which is a known and recognized MAV prevantative medication. With that being said, you may have had a much worse time with your MAV if you hadn’t been taking it. THe serotonin seems to be the big link is migraine/anxiety etc…Good that you are able to tolerate Fex, and that hopefully you can come down on your dose slowly and may be get off of it altogether.
Thanks for sharing.
Kelley
I got excited there too, for a moment Scott, before I read about the Effexor. Thought we might be in with a chance I have just printed out the lists on foods containing msg and realize that I must be consuming some without realizing it, its in absolutely everything. I am off on holiday in a week so going to relax my eating habits, but when I come home I think I will try and cut this out completely, eg. pectin etc. (didnt realize that you had to avoid that). Will see if it makes much of a difference.
Hi all! Re Effexor: one of Effexors main side effect is dizziness ( ratio - 1:10) - the standard dose is 150mg and I was on it LONG LONG before the MAV set in…
I am fairly certain that this chemical may not be doing me such a favor… But Ill have to see for myself as I come off of it!! For me the Zero Apartame and buchholz diet really worked! I would STILL fully recommend this to anyone - with or without effexor!!
a little more info : If you read the book “Heal your headache by David Bucholz” (Johns Hopkins University School of Medicine)- he says that SSRI’s more Often stimulate headaches - the same is true of wellbutrin and Effexor - he recommends substituting a tricyclic-
I have just printed out the lists on foods containing msg and realize that I must be consuming some without realizing it, its in absolutely everything. I am off on holiday in a week so going to relax my eating habits, but when I come home I think I will try and cut this out completely, eg. pectin etc. (didnt realize that you had to avoid that). Will see if it makes much of a difference.