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Intro and Questions about the Heal your headache diet


#1

My name is Tammy. I am 41 with a husband and 2 kids - ages 12 and 9. I live in NC. Here is my story:

I was diagnosed with MAV in April 2011. I was given valium to take as needed. I had suffered for 6 months prior to finally getting my diagnosis. My main complaint and symptom is constant dizziness. Rarely is there a headache, just dizzy 24/7. The valium always worked but I feel that after the 6 months of suffering I was beginning to feel better on my own anyway. Dizzy symptoms weren’t nearly as bad by April as when the originally hit me in November 2010. I only had to take the valium a very few times and would go months without needing it at all. Felt great!

November 2012 I fell and hit my head, actually blacked out from stimulating my vagal nerve from drinking too fast. (I don’t know if this has anything to do with my recurring MAV or not).

Exactly one month later, the dizziness returned. Valium no longer does anything for me. I called my doc who diagnosed me 2 yrs ago (he is a neurootologist). He demanded I have another MRI to rule out any other probs. I did and there were no changes since my last one 2 years ago. He said he didn’t know why the valium stopped working. This discouraged me. I have since found a new doctor 2 hours away at Duke University who specializes in migraines and I am going to see him but not until Feb 27. My friend has MAV too and this is the doctor she sees.

Desperate and reading these boards I decided to try the Heal Your Headache plan. I am almost done reading it. My questions about the diet are the following:
It says not to eat whey protein but can you eat whey?
It says not to eat less than day old bread, bagels etc because of yeast and you can’t have yeast extract but can I buy Thomas bagels? They have yeast as an ingredient but not yeast extract.
I also used to think that sugar caused my dizziness to worsen but that doesn’t seem to be an issue in the book. Does anyone have problems with sugar?
I do know that chocolate and caffeine will make my very dizzy. Up until reading this book I thought those were my only triggers but now I am thinking otherwise. I have given up chocolate and caffeine since this started a month ago. I was doing decaf though until I started reading on this forum and found out that still had caffeine in it. I have not had decaf in 3 days.
I also noticed it said no caseinate. Does sodium casienate count?

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I tend to have a bad day dizzy wise and then slowly will feel better over the course of the next few days until I finally get to a point where I almost feel normal (about day 6 or so) and then it will hit me again. Today is one of the bad days. I think it is from dinner last night. Since I have just started the book I didn’t realize how bad canned soup was and my husband made a chicken dinner with cream of chicken soup in it. I am attributing my bad day to that. Don’t know for sure though as this is a regular pattern for me.

I also sleep A LOT! I got up at 8 today, felt groggy all day, fell asleep for 2 hours this afternoon and felt better when I woke up. I still don’t feel normal but better than this morning. I always seem to have the morning fog and then it gets better throughout the day. I have to take a nap everyday or I can’t function. I hate this part because it seems like all my kids see is me sleeping. I feel like my eyes and brain are completely fried by the time I get home from work and sleeping is the only thing that makes me feel better.

I do enjoy learning about all of this information on this forum. It is great and makes me feel better knowing I am not the only one suffering from all of this. When I am feeling anxious about it all I tend to read here and it makes me feel better.

I look forward to meeting all of you. Thanks in advance to your responses.


#2

Hey, Tammy.

Welcome aboard. I’m sure you’ll get lots of help.

Thomas’s bagels=non-fresh yeast bread=okay on the diet.

After you’re doing pretty well, you can try decafs to learn whether they trigger you. I have been on the diet for quite a while and I drink some decaf coffee but not decaf tea. I do drink white tea, though.

Sleepiness is also connected with stress, at least for me. It’s perverse, because exercise, the cardiovascular, moving the bod kinds, de-stresses and improves energy and like that.

And then there are just some days. A few days ago, my wife tells me, I spaced out maybe half a dozen times. Sucks.


#3

Thanks for responding. I have lurked on this forum for a few weeks and have read a lot of your information. Hope to find some answers or get some help soon. Maybe this diet will help me. Looking forward to meeting lots of great people on here.


#4

Hi Tammy
Welcome to the forum! I see you were diganosed with MAV in 2011 & prescribed valium (good to help you cope but not going to prevent the migraine happening!) ? No preventative meds prescribed? It is very disappointing to read of someone actually getting a diagnosis but not given any preventative meds to try - I shouldn’t be surprised after reading so many stories on our forum of the lack of help for this condition. However, I’m sure now you have your appt with the doc at Duke who specialises in migraine you will be on your way to getting your life back!

Good on you for diving into the migraine diet & doing what you can to control the beast! Have you printed off any of the evidence-based reports which list the migraine preventatives known to be effective? You could take this with you when you see your specialist (he prob. already had this info). In the meantime, an option would be to ask your own doctor to start you off with one of the meds - when you feel this bad even waiting a few weeks to see someone seems forever!
Barb


#5

Yes I have done lots of research on the preventative meds. In a way I am afraid to try them. So many people have so many side effects from the titrating and stuff. It scares me to feel worse. If they give me one though I will try it if that’s what the doctor thinks is best. Since my dizziness is 24/7 I feel that’s the best route for me probably. Thanks for your information.


#6

Hi Tammy,
I understand you being scared of taking the meds - I was too when I first had MAV. I held off taking Amitriptyline because I didn’t want to take a med that had side-effects. It may well have prevented some of the far worse symptoms I then developed. I’ll never know! Now, looking back two years, I wish I had been braver & tried some of the other meds I was also scared of. Sometimes reading stuff on the board & how it affects other people can, in some ways be detrimental. On the other hand, I like to know all the ‘pros & cons’ before I try something!
Now I am trialling my fifth med - Topamax alongside the Dothep. A med some people have found worked really well for them & some who couldn’t tolerate it. My intense headaches have been well controlled for a year with Dothep but have continued to struggle with ‘visual vertigo’ (dizziness & balance problems triggered by head motion/car travel/fluros, bright, flashing lights/noisy environments, etc). I am at a stage where I am ‘exhausted’ by coping with just ordinary, everyday living & am prepared to try whatever it takes to enjoy life again.
I wish you courage on your journey!
Barb


#7

Hey Barb,
My vertigo is triggered by the same things yours is too. Flo lights and busy grocery stores are the worst. 2 years ago when this all started the car riding never bothered me but this time it does.

I am doing the Heal your headache diet and am at the end of week 1. I can say I have felt better since starting it. I don’t know if it’s the diet and I really need to cut out all of the things the book says or if it’s just that I haven’t had caffeine all week. Won’t know for a few months when I start adding things back in.

I definitely will try preventative meds if that’s what the doctor tells me to do. I have gotten so much information from this forum on meds. It makes me feel prepared when I go see him in about 6 weeks.

I also haven’t taken my valium in 4 days (since it really didn’t help much anyway) and I am finally not feeling exhausted everyday. Yesterday was the first time since the first part of Dec that I didn’t have to take a nap. I didn’t realize how long valium stays in your system.

I hope you find something to deal with your dizziness. The headaches are awful too but I don’t get them too often. Mine is mostly the dizziness.

Tammy


#8

Tammy
Good to know that the diet is helping - caffeine is definitely a biggie for me so I don’t try that anymore. Other things like a few nuts or small amount of hard cheese, even lemon juice seem to be OK. It’s just trial & error till you find your weak spots. I don’t have any alcohol either but can’t because of other meds that I’m on. Sounds like you are determined to give it the best try you can to get your symptoms under control.
Barb