Migraine Diet/ 1-2-3 Approach...not buying it

I have long paid special attention to my diet and even prior to dealing with this disaster never ate fast food or consumed caffeine. I can count the times I have had fast food in the past 10 years on 1 hand - same with caffeine. As for choclate - I have never been big into sweets whatsoever.

Since being “diagnosed” with MAV I have given up bananas, oranges, msg as much as possible, cheese, nuts and processed meats. Per the 1-2-3 program in Heal Your Headache, Step 1 is to get off the rebound causing quick fixes…I am not and have never been on any…Step 2 increase threshold by avoiding triggers…I have done so for months now to no avail… Step 3 preventative medication… I have tried numerous medications over the past +/-6 months.

I have a hard time buying into the “theory” that what I eat has that huge of an impact given that I have always maintained a healthy level of activity and quality diet. Why all the sudden 1 year ago would my life become miserable? Food? Im not buying it. Why would there not be any respite in 1 whole year? Food?

I am a healthy, fit 30 year old male who until recently played competive soccer, basketball, softball as well as hiked and ran all the time. Now…I force myself to the gym and suffer through 30-45 mins 2-3 time/week. Not to mention I never want to do anything social for fear of this ridiculous affliction ruining the event for me and anyone with me.

I tried the diet strictly for almost 1 year, with zero success (other have had success). the way I see it, I am so very ill that I need meds to end this horrible m igriane cycle. I am also so consistently sick that it is impossible to identify any migraine triggers. I just hope that I find a helpful med - many have. unfortunately, it takes some trial and error and dealing with side effects, etc. Have you gotten to a thearpeutic dose on any meds? good luck.

— Begin quote from "MAVLisa"

. Have you gotten to a thearpeutic dose on any meds? good luck.

— End quote

I am currently on 150mg of Effexor and my Dr wants me up to 225 in 2 weeks. I think I am going to ask that I remain at a constant thought the holidays so I can hope to avoid the ‘shock’ to my system increasing the dosage yet again.

have you seen any improvements on Effexor? what other meds have your tried and what doses? thanks. I’m currently pregnant, and will be retrialing meds in Feb after I give birth- I cannot wait, as it will give me more hope of improving. I have tried a high dose of Verapamil in the past without success, and may revisit Nortriptylilne - I took it in the past but didn’t get to a high enough dose, or possilby Topamax. People have found success on Effexor. Hope you do as well. lots of luck. this is a very difficult journey.

Hi Fading,
I too have a “perfect” diet and did prior to MAV as well. I think when you are very sick you absolutely need meds. I am mainly bedridden, although I do try to push through a bit of cardiovascular activity each day (it is torturous though). Prior to MAV I was a competitive triathlete training over 2 hours daily while working over 70 hours per week as a physician so do not despair that your perfect diet and lifestyle is not making a dent in helping your symptoms.

What are your symptoms currently and how diabled are you? Was Effexor your first med? Has it helped you in any way?

Good luck.

All my best,
Lisa

Lisa,

I had a period of 4-6 days that was much better approx 3 weeks ago. No rhyme or reason to why I started feeling okay then quickly back to misery.

This is my first trial with effexor (approx. week 6) 37.5mg then 75mg now on 150mg.
I tried Amitryptilne(spelling) for about a month and Verapamil for about a month. Dr just kep swtching me up and didnt keep me on any one thing long and has since referred me to a neurologist that I have not yet met. (Appt in early Jan).

This all started about 1 year ago. Have spent thousands so far on MRI’s, hearing and balance testing, medications, etc.

My symptoms:

• General problem with balance, focus and coordination. Overwhelming feeling that something is just ‘not right’ – very debilitating. Coordination seems off and ongoing sense of “de-realization”.
• Strong sensation that a blackout/fainting episode could occur – very scary and debiliatating.
• Almost a drunken, surreal, feeling most all of the time.
• Minor rocking/swaying sensation at most times – sitting or standing.
• Almost feels like a great pressure on brain – as if brain were swollen.
• Eyes often very head and feel need to close them/doze all the time.
• Not always associated with movement, uncomfortable sensation immediately upon opening eyes in morning. Hypersensitive to sudden noises in morning and movement.
• I have difficulty following simple conversation, often space out or zone out. Feeling generally dumbed down and slower than I once was. Feel like I am looking right through someone when they are speaking
• Busy environs, grocery store/city street seem to exacerbate issues
• No extreme whirling or spinning sensation, just a feeling of constant movement.
• Reoccurring, generally a 10-15 day issue that slowly “rights itself” until now. Typically occurs twice per year. I have seen no common occurrence which seems to link these episodes.
• Was told to use sinus flush and Zyrtec by a GP as they thought it was most assuredly allergy related. (May 08)
• Difficulty focusing on a lot at once. Driving is sometimes challenging.
• Experienced some motion sickness as a child, primarily while in cars.
• Coordination is off, fall/slip occasionally and never used to.
• I try to maintain healthy diet – low sodium, plenty of fruits and vegetables. I don’t smoke; I consume plenty of water per day.
• Pressure and fullness in head and sinuses.
• Intermittent muffled hearing.
• I feel as though while walking around I am constantly cognizant of maintaining balance and not fainting or stumbling into something.
• Feeling social anxiety and reclusiveness as a result. Feels better to avoid all social interaction.
• MRI was all clear and showed no abnormalities
• I left my current surroundings for several weeks during this +/- 11 month episode and had all the same issues while away. This leads me to believe that it is not a local allergy or reaction to something in my local environment (weather, elevation, plants, animals, etc)

Hi Fading!

I am sorry you are struggling with this horrid stuff!! You might already know this, but MANY doctors also don’t buy the food trigger theory. I think its a good idea to wait until after the holidays to up a med and have aggrivated symptoms!! Hang in there!!

Pam

Pam,

These doctors that dont buy into the food triggers - what are their suspicions as to the cause(s) of these issues?

Fading,

I can relate to nearly all of your symptoms. I am extremely disabled by this, unable to even get out of bed a lot of the time. I am housebound at this point, except for some doctor’s appointments that I need to attend (but they are torture). I’ve had this since June 07 - truly a nightmare. Like many, I was active, young, healthy, before this occurred. I don’t think it’s worth figuring out the cause of this anymore. What we have to focus on is appropriate treatment. Even doctors well versed in MAV, cannot identify absolute causes. I, too, have had many tests, and have seen many doctors. Sadly, most docs are not at all familiar w/ this dx, and we have mostly all been through hell before finding a doctor who gets it. continue to post and let us know how you’re doing. I’m sure you’ll find a helpful treatment at some point, hopefully soon.

Lisa

Hello Fading, sorry to hear how you are feeling. The only people who know what we are going through are on forums like this one. What did your caloric test (ENG) show, was there loss on one side? Just curious because I have loss on my left side, I was wondering if others have vestibular loss as well.

Hi Fading,

Given your effort to make sure food is not a trigger with your migraine, it’s probably not a trigger at all given the close attention you’ve given this. In a hypersensitive migraineur, almost anything can trigger an attack: a heated argument, the flu, a flickering screen. Something that is seemingly harmless or even healthy may be setting you off. Here’s a list of the most common triggers. Do any of these seem like a possibility?

• Stress or tension
• Sleep issues––lack of it, too much of it, or sleep disorder
• Certain foods (which does not seem to be a problem for you)
• Hunger and/or low blood glucose
• Alcohol, especially red wine and beer
• Hormonal changes (for women)
• Exercise
• Strong smells (perfume, air fresheners, cleaners, even flowers)
• Cleaning products
• Smoke
• Bright lights
• Lound, piercing, repetitive noise
• Caffeine
• Dehydration
• Weather (including humidity changes)
• Dust
• Sex
• A blow to the head
• Dental problems (bad tooth or TMJ)

The list can go on but these are the more common ones.

Cheers … Scott

Sex?? :o

Yup. Two triggers here: either “orgasm migraine” or migraine triggered by the “exercise”. :shock: Migraine likes to ruin the party no matter where it is.

Jeepers! Alright Scott - looks like a life of Breatharian, abstinent cave dwelling for you.

LOL, well no comment here on whether or not it’s a factor but it’s straight out of “The Migrain Brain”.

The E-medicine article on MAV (you can find it on the main page under “Articles”) says:

“Avoiding certain foods helps fewer than 25-30% of all people who experience migraines.”

(Thank goodness, because I think I’d rather be dead than give up chocolate.)

Good thing you’re seeing a neurologist. The trials of meds you’ve had seem very short. I know that for Topamax, I had to be on that one medication alone (given how slowly I chose to increase my dosages) for 5+ months before I was supposed to even begin to look for symptom improvement: 6 weeks to get up to therapeutic dose, plus 4 months once I had gotten up to that dose.

[I got lucky and stopped having daily symptoms after about 3 months at the therapeutic dose.]

My husband started having migraine headaches a few years ago and had a hunch it might be due to onions - even though he’d never had trouble with them before. So he ate a lot of onions and it brought on a horrible headache; he avoided onions for years. His doc said he was lucky because so many people never figure out what triggers their migraines. If he accidentally ate some onions, he’d get the horrible headaches. But when he accidentally ate some this year and then realized what he’d done - nothing. He ate some again - no headache.

So even if you figure out your trigger, it may up and change on you! I wouldn’t worry about figuring out the trigger at this point. I think you’re on the right track now, looking for the right prevention med. Best of luck!

I’ve just recently started on the “1-2-3-almost everything’s a migraine and I can fit it” diet. (Obviously, I am strongly put off by the author’s style.) This aside, I may already be seeing some benefit.

What I do know is that I started with one bad episode barely over a year ago, at 59, at a time when I was under a helluva lot of stress, and haven’t gotten back on my feet. However, last June a neurotologist decided I have Meniere’s and started me on that diet.

Since a little before then, I haven’t had a recurrence of a minor problem, minor except that it severely limited my work choices for nearly two decades. This was a seizure-type disorder, consisting of very brief periods of disorientation followed by amnesia, maybe once a month. I’m still in the process of carefully tapering off long-term carbamazepine used as an (ineffective) anti-seizure med.

My point is that I know diet is of some value to me, and exactly what/how is not yet clear. I am sure glad I didn’t opt for the shunt operation that the neurotologist recommended.

One point that another post brought to mind is that a long-term tooth-clenching habit was exacerbated by the stress of the past year-plus. I don’t have the sort of TMJ misery that I’ve heard about, but there’s no question that I’ve been sending pressure up thataway for a long time, and more so recently. You gave me something to think about–not that “Gee, I’ll have to stop doing that to myself” is any more use than the old “Just Say No” campaign.

Just have to say, two years ago I was so sick I was barely functioning- it was tough. We have always been healthy eaters, exercisers etc. I was told to try this migraine diet…It changed my life. All of my symptoms vanished. I noticed a slight difference in 4 weeks and by 6 weeks it was miraculous. But Im telling you- I was extremely strick…no cheating and I wrote down what every article said and none of the foods listed (cuz different articles say diff. foods are triggers- so that makes it tricky). My party ended in Sept. when many of my symptoms returned…not sure why!

One needs to remember that our bodies change, and what we may have tolerated all our lives may begin to affect us in a detrimental way. Also, many whole food items get blamed for being an offender when it is how it is processed or what has been added. Many things on the food labels are not easily recognizable for what they really are. This list proved vital for me…
truthinlabeling.org/hiddensources.html

I am not affected by everything on the list. It has taken time to pinpoint which ones are a problem, and yet even a couple of years into managing very well, I have come to discover I am sensitive to barley malt. I didn’t believe that I was, for 2 years into my knowledge of MAV, and something just wasn’t quite right with me. Since I have been abstaining from products with barley malt I have felt even better than before and find I am more tolerant of other food offenders. They don’t all cause the same symptoms or with the same intensity.

Other items I must watch for are nitrites, nitrates, and sulfur. I have found excellent healthy substitutes for my old favorites so I no longer feel deprived.

And too, there will be those that may not be affected by foods and additives and still experience migraine due to offenders they are breathing in every day in their homes, cars, and work places. But that’s another topic for somewhere else.