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Title: Wheat-free diet seems to work so far... Post by msussman on Feb 9th, 2004, 7:36pm Hey folks, recent cluster newbie here...I posted for my first time a couple weeks ago. Now I'm back with a funky diet that seems to be working for me. A quick run-down...after 3 weeks of daily excruciating unilateral fast-onset headaches - very similar to an episode I had 2 years ago and again 5 years before that - I took the advice of a friend who is what you might call an "alternative" therapist (in school for chiropractic, also a massage therapist, herbalist, AK muscle therapy, etc.). I started a strict diet - no animal products at all (i.e. vegan), and wheat-free. Three days later, no more headaches. Still wanting to get checked up, though, I visited my doc a couple days later, where I was given the diagnosis of "probable clusters". He also gave me a few sample packs of Frova (a triptan like Imitrex) as part pain-relief, part diagnostic method. A week later, although I had had a bunch of shadows, there was only one serious headache attack (which Frova cleared up quite nicely, so we know it is migrainous). Then came what we like to call in statistics "repeated measures analysis". I went off the diet, and three days later, like clockwork, daily excruciating headaches at 12:50 in the afternoon, precisely. This time, though, they fit even closer to "classic" cluster symptoms than I'd ever had before...never gotten the partial Horner's syndrome until then. Frova did clear these up nicely, though it seems to take a while - 1 hour before any real relief. (Yes - my attacks do seem to last a long, long time at high pain - about 3 hours on average. A few people have written me concerning my atypical symptoms from my original post saying that their first few cluster episodes were anomalous in various ways, and that they eventually "settled" into more classic cluster symptoms.) Anyway, I started the vegan wheat-free diet again, and 3 days later the headaches have disappeared to mere shadows again...and even those seem to be dying down now. This experiences seem to hint at a strong causal relation there. I've since done a PubMed search and found an experiment back in 1979 where folks in England took 60 migraine patients and played with their diets...apparently 78% of them had cessation of their headaches with wheat removed. It also mentions 65% reacted to oranges - after seeing that, I've since cut out citrus, as well. I know drawing 1-to-1 correlations between clusters and migraines is risky business around here, but the two are at least related. Anyone else have positive experiences limiting certain items from their diet, wheat in particular? |
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Title: Re: Wheat-free diet seems to work so far... Post by ave on Feb 9th, 2004, 8:11pm Well, there is also some evidence that a sharp shock to the system (as in extreme diets, operations, change in living conditions etc.) will chase clusters. Trouble with clusters is, what's a trigger for one, is not a trigger for another. Example: Alcohol is a trigger for most of us, but there is a minority who can drink alcohol without triggering an attack. The usual migraine triggers don't much work for (I should say against) clusterheads. Clusters are not migraines, at all. So you might be leaving out oranges without needing to. If I were you I'd try. Example: A girl I know gets cluster attacks from banana's; never happened to me. Also, a infamous cluster feature is, that what's a trigger - or a remedy - at one time may not work the next time. So, if wheatless does it for you, great. And I am happy for you. But do keep this board in mind and report back, if (lets hope not) next time the diet won't work. Or works again and again. |
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Title: Re: Wheat-free diet seems to work so far... Post by Prense on Feb 9th, 2004, 8:39pm How far into your "regular" cycle were you when the diet seemed to have first had an effect? I don't even think I eat wheat as it is... Oh hell, who knows these days what crap they put in all your various foods. I probably eat the hell out of wheat and don't even know it. Chris |
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Title: Re: Wheat-free diet seems to work so far... Post by ave on Feb 10th, 2004, 7:08am Wheat as in bread, pancakes, pastries, cookies, some breakfast cereals, donuts... Anything made of batter or dough that is not specifically prepared with corn. One of the staples of the human diet for large parts of the earth. Very difficult to keep out of your diet, too. |
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Title: Re: Wheat-free diet seems to work so far... Post by henzey on Feb 10th, 2004, 12:29pm on 02/09/04 at 20:39:03, Prense wrote:
My sister-in-law cannot eat any wheat or gluten products and I was shocked at what all this included....it is used as thickener in just about everything....from ketchup to soy sauce to salad dressings. She has a tough time going to restaurants....that's for sure! |
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Title: Re: Wheat-free diet seems to work so far... Post by msussman on Feb 10th, 2004, 3:32pm Well, I may have to eat my words here...I was going pain-free for 3 or 4 days, then woke up this morning with a deep, deep shadow this morning. Not quite a full-blown attack (maybe a 5.5?), but on the verge of one. Again, a frova seemed to work quite nicely. This is only the second serious HA (aka needing medication) that I've gotten during a wheat-free period. I've been experimenting with wacky grains I've not had before, so I'm currently suspecting it was some millet I had last night. The other wheat-free headache I had was a week and a half ago. I also woke up with that one after eating at a questionable Indian buffet the previous night. As mentioned previously, wheat is in everything, so it's nearly impossible to avoid when eating out. I've had good luck with a new sushi place near my work, though - they now know me as that vegetarian guy who brings his own wheat-free soy sauce. I still think going wheat-free is fundamentally better than my doc's next med recommendation - going on a calcium channel blocker (aside: he says he's had better luck with norvasc, as it has fewer side effects than verapamil). Prense, to give you the gory and boring details - I was about 2 weeks into a cycle when I started the diet...No HAs for weeks 2.5 - 3.5, then the Indian incident. Went off the diet at that point, resumption of daily HAs at week 4, at which point I started dieting again. Week 4.5 in and I've been without pain until this morning (week 5), which as mentioned was kinda borderline. Hopefully I'm coming to the end of my cycle soon. Ave, admittedly, clusters are not migraines...but if the same meds work between the two conditions, it doesn't seem too outlandish to suspect that similar dietary exclusions might work, too. For those who care, here's the pubmed link to the paper I mentioned: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=87628&dopt=Abstract |
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Title: Re: Wheat-free diet seems to work so far... Post by Prense on Feb 10th, 2004, 10:56pm on 02/10/04 at 15:32:57, msussman wrote:
Perhaps...most here do not report many side effects with verapamil. The most common would be constipation. I have been taking it for years now (no idea why though...it isn't working) and I am currently on 480mg/day. I cannot complain of any side effects at all. There was some minor constipation for a short while after increasing the dose, but that passed quickly. Considering all the meds used/tried as preventatives for CH, CCBs are quite mild unless you have low BP or something. Best of luck to you! Chris |
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Title: Re: Wheat-free diet seems to work so far... Post by bobkip on Feb 11th, 2004, 11:39am Tho I've never tried going wheat free, it certainly does seem worth considering. My bane during a cycle is MSG and the damned stuff is in everything and I do mean everything. When traveling its impossible to avoid; most resturants use it by the tons. Kip |
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Title: Re: Wheat-free diet seems to work so far... Post by ave on Feb 12th, 2004, 5:54pm Well, most vegetarian restaurants don't. You could get yourself a few good meals without the stuff rrom hell. Veggy cuisine can be very good and tasty, though as a newby I'd stay away from the Vegan meals. |
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Title: Re: Wheat-free diet seems to work so far... Post by toader on Feb 13th, 2004, 8:13pm it prune time!! :-X |
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Title: Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Feb 14th, 2004, 9:13am I've been preaching about the wheat free diet and regular detox as a way to break the CH cycle on this site for 2 years now. It works great for me but is very hard to stick to long term as wheat is in everything! I even try and eat a grain and cereal free diet when I detox especially to break the CH. I try and eat only fruit, veg and water during the first 2 weeks. It usually induces a 3 day detox HA, but when that is gone so is the CH for another year. I am not sure if wheat is the cause of CH, but staying off it for a few weeks may stop the pain Most people on this site are very sceptical of this and would rather take drugs to find a solution that to use their willpower and go this route. John |
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Title: Re: Wheat-free diet seems to work so far... Post by ave on Feb 14th, 2004, 11:08am This is not worthy of you, john. It is not lack of will power in most cases. It is the grand fear, of the beast coming back and no meds allowed. |
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Title: Re: Wheat-free diet seems to work so far... Post by boomboom on Feb 14th, 2004, 11:12am John, Sorry, but I'm new here. Could you explain what your detox diet entails? Thanks. |
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Title: Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Feb 15th, 2004, 3:38am Ave, but I have had plenty of flaming on my detox method these past 2 years so excuse me if I you think my comment is not worthy of me. BoomBoom essentially my method involves: Eat ONLY fresh fruit, fresh veg and drink ONLY LOTS OF water for at least a week, 2 if you can manage it, then introduce a LITTLE protein (lean chicken and fish) and a LITTLE dairy over the next 2 weeks. NOTHING ELSE is allowed, but eat as much as you like of everything you are allowed. After a day or so you will probably get a nasty detox HA. If you can't take the pain for a few days then maybe you could use imitrex or O2, but best to stay med free if you can. Within 5 days your cycle should be breaking and only occasional shadows for the next week, then if it works for you like it has for me you will be PF until the next cycle. As I said Ave this involve no coffee, drugs, wheat, etc,etc, and is beyond most peoples will power!!!! It works for me. ;) John |
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Title: Re: Wheat-free diet seems to work so far... Post by henzey on Feb 15th, 2004, 9:53am on 02/14/04 at 09:13:44, jmorgan52 wrote:
I have actually tried this route and it did not help me, but instead I am starting to learn that meat/fish are my issue. I am staying away from breads/grains fortified with iron and meat products...as these appear to be issues for me. High iron has been shown to be problematic for migraines/clusters. John...I think that the issue is that many of us have different triggers/causes...and some may NOT be food sensitive. My guess is that most CHeads would gladly eat differently if they really thought it would work...it's just that it does not work for all of us...or at least not consistently enough for some CHeads. |
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Title: "Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Feb 16th, 2004, 2:28am Don't get confused between "triggers" - which set off an individual attack, food intolerance, and the detox diet (which may not work for some or many of you). As Ave said near the beginning of this thread "extreme diets" can cause a shock to the system which can affect the CH cycle. I have to agree that this may be the reason for the detox diet seeming to work for me in my last 2 episodes to break my cycle. It has also worked for several freinds to stop their daily migraines. Their may be a big difference between triggers and food intolerance. Alcohol as a trigger may be purely down to the "relaxation effect" as indicated by many here. The same may go for "comfort food" like chocolate and cheese? Long term "food intolerance" may have no immediate effect on a person, but a long, slow build up of "toxins" (for want of a better word!) may be enough the start the CH cycle going. For all I know the CH cycle may in fact be natures way of "detoxing us". Put that in your pipe and smoke it! John |
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Title: Re: Wheat-free diet seems to work so far... Post by Charlie on Feb 16th, 2004, 6:07am Look up celiac disease and see how tough it is to avoid wheat. You'll be eating a ton of rice and corn bread. Some Kosher stuff can be good too but it's still very hard to adhere to a gluten-free diet. You'll find that wheat gluten is used everywhere; even in medicine capsules. Here, there isn't a lot of evidence for a dietary solution in any event but someone once said that they'd drink Windex if it killed clusters. Good luck in any event. Charlie |
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Title: Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Feb 16th, 2004, 8:07am I find that I now eat more things like rice noodles instead of spaghetti, I have not had much problem avoiding bread. I don't bother to find replacements like rye etc, I just don't eat (much) bread anymore. It is just about impossible to completely avoid wheat, but cutting out the obvious may be enough for me. When I started on this type of diet 2 years ago I wondered what I could eat without my "daily bread", but guess what - cheese and an apple tastes just as good as a cheese sandwich! Fresh fruit, nuts, honey and yoghurt is much nicer than toast and cereal for breakfast. You get the picture? As for the tenuous connection with wheat gluten as a contributor to CH the jury is still out even for me! But.... avoiding wheat as much as possible has had some positive spin-offs for me that indicate that wheat is not good for my health: I am slowly losing weight when I previously battled. I never get heartburn which bread and pastry always seemed to bring on. I get much less headaches (my main motivator) My skin and scalp is in much better condition I generally feel better wheat free - more energy, more motivated, better mood. It may be all in the mind but if it works it is worth the effort. John |
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Title: Re: "Wheat-free diet seems to work so far... Post by henzey on Feb 17th, 2004, 2:54pm on 02/16/04 at 02:28:01, jmorgan52 wrote:
I understand your point about the difference....I have actually tried eliminating all gluten products and still had the headaches, but eliminating meats and products high in iron does seem to work for me. Reducing the gluten as well does not seem to have any impact. So I was making the point that how you define a detox diet may not be the same way that I have to define it. Now...I will go put this in a pipe and smoke it! |
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Title: Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Feb 18th, 2004, 2:03am Henzey, good point, but note that my detox diet also eliminates meat for the first few weeks, then re-introduces light meat (chicken, fish). I try and avoid too much red meat anyway. But.. we are all different so maybe my fruit and veg diet to detox may not be the one for you and many others, and perhaps some other "shock diet" may do the trick. I know of people who have done high protein, low fat, low carb diets for a month with amazing improvements to their health and overall wellbeing. Maybe wheat/gluten avoidance is not a "silver bullet" for everyone. But something else might be - like meat, or dairy, or whatever. Some time ago there was much talk about the "blood group" diet where different foods were supposedly bad for the health of different blood types. Maybe there is some truth in this? I still maintain that what we put into our body (wittingly or unwittingly) or are exposed to by the modern environment has a tremendous impact on our health. Why should CH be excluded from the list of ailments that are induced by the wrong diet/environment? (may be different for each individual) Why dosen't everyone then suffer from CH? The same way that not everyone suffers from Cancer, Heart Desease, etc. Maybe many of us have evolved a little to be able to tolerate the particular toxins that cause the different deseases? Just my thoughts John |
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Title: Re: Wheat-free diet seems to work so far... Post by msussman on Mar 2nd, 2004, 3:29pm UPDATE: It's been three weeks now since I last posted, and not a single cluster attack. The wheat-free thing seems to be working for me. (Extra emphasis on the "for me"...your mileage may vary). I have noticed a very light shadow when I eat chocolate, but strangely not with coffee. Also there has been the occasional minor exertional headache brought on by exercising too hard, but I consider that completely unrelated as its bilateral. Food-wise, it turns out not to be as difficult to do the vegan wheat-free thing as you'd expect. Just make sure you have a ready supply of fresh fruit and veggies. There are also a few good pure-rye breads out there. I've since reintroduced eggs into my diet with no ill-effects. I plan to reintroduce dairy soon and see what happens, and eventually wheat. Jmorgan, good to hear that I'm not completely alone in my dietary findings. How long do you typically stay on your detox diet before knowing it's "safe" to go off it...i.e. that your episode has fully ended? Mike. |
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Title: Re: Wheat-free diet seems to work so far... Post by msussman on Mar 2nd, 2004, 3:32pm Ooh, one last thing about the whole gluten thing that was mentioned... This does *not* seem to be related to coeliac disease or gluten-intolerance. I can eat rye and oats (usually a no-no for coeliacs) with no ill effects. Also, the millet seemed to cause serious shadows, and millet is supposed to be fine for coeliacs. |
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Title: Re: Wheat-free diet seems to work so far... Post by Kevin_M on Mar 2nd, 2004, 7:09pm on 02/09/04 at 19:36:15, msussman wrote:
Have gone wheat-free for years while experiencing many cycles come and go. Kevin M |
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Title: Re: Wheat-free diet seems to work so far... Post by jmorgan52 on Mar 3rd, 2004, 2:48am Mike I usually stay on the detox diet for at least 2 weeks but try for 4. By the 3rd week it is getting harder to stick to! The HA have gone by the end of week one on both occasions I did this diet during my cycle. The first time I was 6-8 weeks into a really bad cycle (I was very desperate!) and thought that perhaps my cycle may have ended naturally. The most recent time I was 2 weeks into cycle when I started and it was over in a week so that reinforced my belief that the detox diet works for me. To check if the clusters have gone I wait until I have gone a full week PF then I drink some beer and wine! If it does not induce a HA then I am cautiously optimistic that the cycle has broken and I can get on with my life. 8) Kevin The wheat free diet may not work for everyone, but it is worth a try! Sorry it doesn't help you. As for wheat (or Gluten? or yeast?) in general (for me) I do not really have any serious negative reaction to it, so I am not really "wheat intolerant" as such, but.... If I eat pastry or bread on a regular basis I suffer from heartburn, have a tendency to gain weight and feel sluggish, and long term I do believe it may cause some of my headaches. Having said that, when I am CH free I can eat and drink anything without ill effects (no HA) apart from those mentioned above. John |
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Title: Re: Wheat-free diet seems to work so far... Post by NYRenee on Mar 3rd, 2004, 12:04pm With some research I found out that almost all commercial breads have malted barley flour...malted barley flour has something called tannins in it, and some people can be very sensitive to tannins. I just sent a reply on this subject ( food and chemical triggers) To learn more about malted barley flour go to http://www.widomaker.com/~jnavia/tannins/tannbrd.htm So maybe by eliminating your consumption of breads with malted barley flour, it's helped with the severity of your attacks. Just a thought |
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