New member who needs encouraging words

Specific Illnesses & Conditions VM/MAV
#1

Hello my name is Lina, I’m 20 years old and was diagnosed with MAV about two years ago (though I have been dealing with the associated problems all throughout my life). Sorry if this post is long but please read!

Anyway, I started the Buchholz diet about a month ago. This past summer has been the worst in terms of my migraine and vertigo symptoms - everything from visual and other sensory auras, vertigo, constant unsteadiness, throbbing headaches, etc. My neurologist said I was in a “constant state of low-grade migraine”. (Migraine 24/7 for the whole summer?! Scary!) So she prescribed me steroids to “break” the migraine. She also prescribed me Verapamil, a very low dose at 40 mg. a day.

I felt the combination of the three treatments (diet, steroids and Verapamil) were very successful in getting rid of the actual migraine symptoms and auras, but not the vertigo. I have been pretty good about the diet, but let’s be honest, I haven’t been PERFECT (I probably follow it about 60% of the time).

Anyway, last night I went to a Mexican restaurant with my friends and, because they knew the owner, I ended up eating a lot of the food I knew I shouldn’t because I didn’t want to “offend” the owner. Last night I ended up having bad nausea and vomited. And this morning I woke up with the worst, most painful throbbing migraine I have ever felt a long time with spinning-sensation vertigo. I haven’t felt this bad in a long time.

I guess I’m just asking for some encouraging words. Do you think the foods were what triggered my migraine/vertigo episode today? (I had a similar experience of migraine/vertigo/nausea when I went to another Mexican restaurant a couple weeks ago. I think because a lot of the foods they provide - salsa with raw onions, cheesy foods, sauces that probably have MSG in it- are triggers). How many of you have had good results from Buccholz’s diet? Also, this summer has been particularly stressful for me due to outside circumstances (break-up with boyfriend, taking intense summer classes, stressful internship, etc.) It’s just really hard to feel like you’re getting somewhere (my neurologist said I’m “not better yet, but on the path toward getting better.”) and then to have a setback like today.

Anyway, please send me your stories, encouraging words, advice, diet tips, or even migraine-friendly recipes (keep in mind I’m a beginner chef!) Thank you all in advance and thank you for having this community!!!

-Lina

#2

Lina,

I’m sorry to see you’ve had to join this forum, but welcome. I’m sure you’ll find the same generous support i have over the last year. It’s been an essential part of my recovery. A year ago i was bedridden, today I am driving.

I can tell you with certainty that if a meal contains a trigger for you, it can set off an episode like the one you had. It’s not been my own experience, but my sister-in-law suffers with MSG-triggered migraines and if any amount of MSG sneaks into her meals she lands in the hospital.

My experience with the diet is that while I stuck to it strictly, it didn’t make me feel better, but when i started adding foods back, it was clear if a food was a trigger or not. Within a day or two i would become more dizzy. It was well worth sticking with it and knowing for sure what was on the off list so that I can eat what’s okay without fear of being thrown back into bed.

How do you feel on steroids? I had to take them once for something unrelated and they made me so sick! worse than the original condition. i couldn’t wait to get off.

We talk a lot on this forum about stress, not only as a trigger, but also as a part of a particular migraine picture - MARD. If you’re interested, look at the articles section on the forum main page, first link for MAV articles, and the first article posted by Scott. When i got classical migraines in my young adult years, they were always triggered by stress - always.

As far as diet tips go - stick to the diet strictly for three months and then start adding back. And keep notes when you add back. It is SO worth it - three months goes very quickly. As far as recipes - i was posting recipes, but nobody seemed to be using them so i quit :frowning: i finally found out it was because they were too complex. I love to cook, so i get a little creative i guess.

I did post a few easy recipes for doggy treats and kitty treats though - if you want those, let me know - they are easy enough :slight_smile:

Take care Lina, hang in there, there is treatment for this monster, you just have to find the right med combo at the right dosage, the right diet, and the right lifestyle - easy, huh?

Julie

#3

Lina,
Couple of things.

First, while I can’t seem to identify any specific food triggers, a lot of people can. If you had this reaction twice after eating the same kind of food it seems like a no brainer. It would also be pretty easy to put to the test. Just go a week - or however long it takes to feel better - and then take one last stab a some mexican food. If you have this reaction a third time your confidence level should be very high that you’ve identified a trigger. And even if you LOVE mexican food this is great news - identifaction of triggers is a huge step in getting better.

Second thing. 40 mg/day is indeed a VERY low dose of Verapamil, and Verapamil is a pretty benign medication with few significant side effects. I had a big improvement in the vertigo (it just stopped) when I started on Verapamil and my start dosage was 120 mg/day - still considered a pretty low dosage. Now some other things coincided with my improvement so I can’t be sure it was all due the the Verapamil, but if I were you, I’d push for a higher dose. Unless of course, there is some reason your doctor is keeping it so low.

Hang in there, it sounds like you’re in the hunt.

Chaz

#4

Hi Lina -

You found the best group of people you will ever find right here!

I’m one who is extremely sensitive to MSG. When I first started Bucholz’s diet, I wasn’t seeing huge improvements, but I was seeing some. Enough to make me keep digging. I found out it was the MSG that I thought I was avoiding, but wasn’t. Its everywhere (literally). It hasn’t been my cure-all, but it definitely makes a difference. When I knowingly eat it now, I know I’m in for trouble, and when I unknowingly eat it, I scramble to try and figure out what it was in. I’ve eaten Mexican food a few times in the past couple of years and turned out not having any problems, however, I think I was fairly lucky. (Not Fast-food - like Taco Bell, that would be a death sentence for me for sure). When you ate out that night, did you drink any soda, or diet soda?

So, to answer your question, in my opinion, Yes, the meal you ate could very well have set you off. Thats great news that you have seen some improvement with the diet and meds so far. Thats very encouraging. Like Julie said, its all about finding the right combo, and in Chaz’s words - “sounds like your in the hunt”. Thats the first step. It can be a long road, but you’re headed in the right direction!!!

Welcome-

Kim

#5

Lina,

to second Chaz’s comment, the verapamil dose is quite small. Hain prescribes it at 120-240 mg and he’s a conservative prescriber.

Julie

#6

First of all, I would like to thank you all SO MUCH for responding so quickly! I truly appreciate it.

-To Julie: I really really hated being on the steroids too! I was on a two-week treatment and I had a lot of side effects that made the entire experience feel worse than a simple migraine. But it did work. My main complaint was the insomnia and irritability (which can be hellish in hot weather and under stressful circumstances). The other side effects I’m not sure if it was from the medicine or from my migraines (nausea, drowsiness, etc.)
-To Chaz: Yes, thank you, it is a lot more comforting to be able to identify food triggers rather than to feel clueless and hopeless. I will definitely try your method of waiting until I eat Mexican food again, but I’m pretty sure I’m going to steer clear of it for a long, long time, haha.
-Regarding the Verapamil: Yes, the 40 mg is a very small dose but my neurologist and my pediatrician (who knows my medical history with migraines the best) agreed to keep the dose very, very small because I am still “very young” in their opinion. I think they’re afraid of side effects and whatnot. My neurologist started me off on an even smaller dose of 20 mg (I had to cut the pills in half) and even then I had a great results regarding my visual symptoms. Also, since I just started, this may be a trial dose and they will probably up the dosage when I see them for a follow-up.
-To Kim: MSG is so so so hard to avoid! It’s in so many things, even vegan foods (which use a lot of soy protein replacements–a form of MSG!). So I guess, for now, the best way for me to avoid it is to cook for myself (I’m a college student–this is extremely challenging! :smiley: ) and to cook simple foods.

Again, thank you all for your encouragement!

Best,
Lina

#7

Hi Lina

I can’t really add anything to what the others have said but just wanted to say welcome to the forum, you won’t find a better bunch of people.

In terms of encouraging words - it seems to me that you have made a lot of progress already; you have seen some improvement on a very small dose of Vermapramil, so there is huge scope for more improvement in the future, you have identified that some of your triggers are dietary, and you are dealing with this whilst carrying on with life (classes and internship).

Hope you start feeling even better soon.

Becky

#8

Hi Lina.
Sorry you have to be here.
You really have been taking control of your migraine haven’t you?
It looks like every one has covered all bases, so all just say hello and wish you well.
You’ve come to a great place with some wonderful people who are happy to help.
Jen
:smiley:

#9

Welcome Lina,

Sorry that I am such a slow replier and only getting to your post 3 days later.

Regarding the food thing, I have done something similar to what you describe at family gatherings. Eat something to be polite. For me, if it is the wrong food, I will usually know in less than a half hour, sometimes while still eating the food. So yes, your little experience recently was probably food related. Don’t get me wrong, there are a number of foods that I don’t eat, because they add up and make things worse slowly over time, almost unnoticible.

I just went through an experience of that recently, neither my wife or I were able to cook so we were eating either fast food through a driveup window, or frozen food that our oldest son could cook for us in the microwave. Needless to say, after about three or four days of eating the wrong food, things started rocking on me, and stayed that way until my wife and I gained the ability to start cooking.