20 years of migraines and chronic pain- another food intolerance story

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20 years of migraines and chronic pain- another food intolerance story

Post  Chucky on Tue May 15, 2012 10:35 pm

There are some posts about success with the elimination diet – I would like to share my story in hopes that it may help just one person find relief…. -Christina

I have been getting serious migraines for 20 years. I'm almost 32 (female). I get migraines that make you vomit 15 times in 5 hours - rocking back in forth in the shower balling my eyes out – contemplating going to emergency only to decline due to the possible 6 hr wait before being assessed, wanting to inflict pain on my body to divert the pain. I also had chronic nerve and muscle pain that haunted me every minute of every day. It felt like my nerves were constantly on fire in the neck, upper back and shoulders. My muscles ached and took 20 minutes to an hour every morning to get moving. Awful sleepless nights, waking up every morning feeling like I'd been hit by a truck, going through every day with a fake happy face – suppressing all feelings that were real deeper and deeper. Then the chronic pain and migraines started robbing me psychologically with increasing isolation, failed relationships, bitterness – leading me to finally start seeing a psychologist and going on anti-depressants.

I took Relpax for the migraines, and Percocet or 3 T1's, 3 Advils for the chronic pain. Have tried countless other migraine, nerve suppressants, anti-inflammatories, pain killers, but nothing seemed to touch on the pain – and if it did, it was not consistent and relief was only temporary. As the years progressed, it seemed to get progressively worse; doctors started sending me for CT scans in search of a brain tumor, MRIs, Blood tests, neurologists, Rheumatologists - finding nothing.

Until... I got a serious case of salmonella poisoning in Mexico a couple months ago. Although it pretty much ruined my trip - it may have been a blessing in disguise. Was on the BRAT diet for a couple weeks (banana, rice, applesauce, toast), then slowly started introducing food back into my system. I’m not sure why but I never reintroduced milk products; having almond milk / yogurt as a substitute. Then one day I noticed I hadn't had a migraine since I got sick, my body no longer ached, I was sleeping better, the world was starting to look a better place, pain and consequences wasn’t constantly on my mind. The only thing that had changed in my life was the absence of dairy.

I'm going for a lactose test this weekend. If that's positive then it's most likely lactose intolerance. If it's negative, then it's most likely a dairy intolerance. Whether its lactose or a milk protein – my body is not recognizing it and treating it like an invader, constantly fighting it like an infection, resulting in chemical reactions, inflammation; always being on high alert.

It brings tears to my eyes to think that all these years of pain, isolation, drugs, and depression may be the result of food intolerance. That innocent daily bowl of cereal and my favourite lattes were breaking me down. The thought of this being true makes me emotional, thinking and hoping that a 'normal' life may be possible. Even the fact that I have lived the last 2 months pain-free is so powerful- just knowing that it is possible and getting a taste of what it feels like. Please, oh please, let these pain free days continue….

Chucky

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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  Mini on Wed May 16, 2012 5:24 am

This is a wonderful news. Both that you are free of pain, and that you have found what was causing it.
How sad that no one, no doctor spotted or suggested it before.

I know from my own experinece that many, many foods are a M trigger for me. and I try to completely avoid them, even if it makes my (and my friend's life difficult) since I am sensitive to many ingredients and need to be very careful when eating outside of my own home.

However I was never lucky lucky to disover just one group is the cause ( I have completely given up all diary producs years ago, with no noticebale difference).

The problem is I also suffer from several chemical and environmental triggers which cause a reaction just as you have described. I am constantly in pain all over (even when my head does not hurt). I have even tried to describe this to my neuro, saying that I feel that I have M in all of my body since I hurt so much. I realise now that this is a chronic inflammation, that my body is constatly fighting something (itself?).

I think the doctors need to look at our bodies as a whole, instead all specialist just look at bits and pieces and cannot see the whole picture making us more ill, instead of better.

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very interesting

Post  chelle8178 on Fri May 18, 2012 7:12 am

Very interesting....I never thought about an aversion to dairy products being a cause of migraines. Chucky, I am in the same boat as you. I am 33 and have been suffering from migraines since the age of 14. I have tried every drug imaginable, Botox, many diets, but now I will be eliminating dairy and seeing what that does for me, hopefully something. I am so tired of being in pain every single day. Thanks for the post!

Mini, I so agree with you. Migraines are not all in our heads (pardon the pun). My whole body constantly aches and I have trouble moving around most days and I have tried to tell the doctors, but they just sord of overlook that and prescribe some other drug for the migraines...
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hello

Post  gailgigi on Sun May 20, 2012 4:52 pm

Hi there: How did you manage to go to Mexico being in such chronic pain? Glad you're doing better. Hope it continues.
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  tortoisegirl on Sun May 20, 2012 6:12 pm

Chelle: Conditions such as fibromyalgia and chronic fatigue syndrome are quite common along with migraine. Fibro would be more predominantly aches / widespread pain while CFS would be more predominantly fatigue, although they have a lot of overlap and some folks actually have both.

If anyone is getting symptoms such as aches, widespread pain, morning stiffness, sleep problems, anxiety, fatigue, brain fog, etc, I would definitely recommend seeking out a specialist such as a rheumatologist. Not all rheumatologists "believe" in fibro though, so you may want to check if its listed as one of the conditions they treat on their website, a review says someone sees them for it, etc. Although there isn't a conclusive test to diagnosis either, with a review of symptoms and tests to rule out other stuff (and tender points for fibro), the diagnosis is often clear. A lot of the treatments for migraine and fibro are actually similar...Lyrica, Savella, Cymbalta, Tramadol, Amitriptyline, massage, physical therapy, B and D vitamins, etc.

Although I haven't made much headway in treating my fibro symptoms, knowing what explains at least some of my symptoms is helpful (the doctors also think I have something auto immune going on). A doctor which ignores new symptoms isn't a keeper in my book. Its better to more definitely know that the symptoms are or are not part of the migraine condition that to have your doctor discount them.

Too often I read that a doctor ignores a patient's symptoms such as this telling them its normal aging. I think a patient knows best what is going on in their body. For me at least it was more obvious because at 23 years old (now 26), aching all over, having trouble climbing stairs, being stiff when getting up, brain fog, fatigue, etc, just isn't normal. Best wishes.

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fibro, CFS

Post  chelle8178 on Mon May 21, 2012 7:11 pm

TG-- I have often wondered if I could have fibromyalgia because of the fatigue, stiffness, joint pain, achiness, etc. I am definitely going to discuss it with my neuro at my next visit. And, maybe see a rheumatologist after that. Thanks.

Michelle
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  ZomigMan on Thu May 24, 2012 2:56 pm

Well, I can relate to your issues. I did an elimination diet years ago under the care of a naturopath to determine why I was getting weird symptons similar to flu, and discovered that I was allergic to beef. Go figure... its beef protien that I am allergic to. Turns out that my grandmother had the same allergy and never knew it. She was sick all the time, and ate more and more hamburger and got sicker and sicker. But that is another issue to migraines... which I also have.

I get food related migranes. Basically foods high in tyramine (a vasoactive amine) causes the blood vessles in the brain to contract and then swell, leading to the migraines. I was diagnosed with migraines later in life, though I have had them all my life. They were rare until I turned 40, and then they started getting more common, until now when I get one a week or more. It seems to be related to my diverticulosis, which is the formation of small pockets that form in the colon with age. Seemingly more tyromine gets into my bloodstream then did before.

At any rate, foods high in tyromine and/or other things that give me migraines are: MSG, tofu/soy sauce/miso soup, ripe bananas, almonds (I am not sure what is in them that give me headaches, but they are not good for my colon anyway), Champagne, sherry wine, port wine, ripe avocados, aged cheese (especially Swiss), liver (any) and pate, chocolate, and maybe pickles and olives. Red wines vary, some give me migraines while others do not. Oh, and several opiate derivitives give me migraines (dilauded and morphene).

As for MSG that stuff is creeping into everything in a can, bag or bottle. Recently I noticed that all the commercial Ranch dressing has MSG in it. So do Doritos corn chips. Lots of soups and sauces have MSG, and things that you would not suspect, like Doritos. Read the labels.

I was diagnosed for Migraines by a Psychiatrist who I was seeing for ADHD, and he was also a Neurologist (double specialist). I had seen some doctors before that that diagnosed me with cluster headaches, strees headaches, and/or tension headaches, but nothing they gave me for them did any good. Many males are mis-diagnosed as they are far more common in women (migraines are related to your X chromosome, so women have 2x the likelyhood as compared to men). If I get a bad one I an out with expreme pain for a day or two to the point of vomiting and just staying in bed. The Neurologist gave me an Rx for Zomig, which usually does the trick, though not always. I was also given Imitrex when I had a migraine in the hospital last year for a severe case of diverticulitis after they had admitted me and gave me dilauded and morphene for the extreme pain.

I am trying 5-HTP supplaments now to see if there is any effect of that to counter the effects of tyramine. My understanding is that 5-HTP is a MAO that interacts with tyromine and oxidizes it before it reaches the brain. There is some worry that 5-HTP causes heart valve scarring like fen-phen does, but they have been using it in Europe for years and not seen any correlation with the heart valve scarring. My doctor also warned me about heart valve scarring using drugs like Zomig, and said that the complications were similar to fen-phen use.


Last edited by ZomigMan on Sun Jun 10, 2012 4:48 pm; edited 2 times in total
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  blueskies on Fri Jun 08, 2012 10:01 pm

Hi Chucky,

I'm new to this site and really glad to read that food intolerances has beeen found to be your problem. Alas, for me, I follow a strict elimination diet most of the time, have done for 9 years, have been able to add dairy back in, and it controls, most of the time, a painful skin reaction I have (the nerves on my skin 'mis-read' certain chemicals in food that are essentially harmless and cause me to feel like I have bad sunburn. I have, not however had any resolution to my migraines, and indeed over this time they have become chronic daily migraine.

But I would say to everyone to do a proper elimination diet under the guidance of a dietician or food intolerances/allergies doctor or clinic because as you've food, it could be the answer to migraine. Just not mine, unfortunately.

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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  dcook60 on Sun Jun 10, 2012 11:26 am

blueskies, i just wanted to add a little note to your informative post. my solution to the WORST migraines, the go-to-bed-and-barf for 40 hours kind, has been to eliminate ALL food chemicals.

even at trader joe's, which recently opened where i live (lots of residents have been begging for a t.j.'s for years) there are multitudes of chemicals, especially in packaged/frozen items. but this is a store when i can find many affordable things to eat without the 12-hours later killer head.

for about 15 years, this has been my diet. it is not that restrictive, as i'm able to eat almost all REAL food. i buy organic when financially possible, but certainly can't afford all organic food. it's the added chemicals, which started to be used by food processors after the second world war.

personally i have been to too many alternative practitioners and allergy doctors, nutritionists, etc. to count. if one has limited funds, it's really easy to do this on one's own, perhaps with the help of the many books out there on the issue. just read labels, and if you can't pronounce the thing, it's a chemical foreign to the human body.

nobody wants to hear this, of course. i've posted before, and there are very few responses.

and yes, i still get daily migraines (in the middle of the night, usually), for which i take a lot of triptans. but i am now functional, and can go to work 30 hours/week at age 72, which i think is pretty good, considering my former life. my migraines started 43 years ago, so i had many years of pure misery, and now things are much better. not a cure for me, but a huge improvement. dianne
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  ZomigMan on Sun Jun 10, 2012 5:30 pm

The unpronouncable addatives are an issue for many of us, and I do not doubt that a lot of additives are a problem for many people on several levels (not just people suffering from migraines). Red and yellow dyes seem to be a common problem, as well as MSG and nitrates/nitrites. However, for about 30% of us that get the type of migraines that I do, the main problem with food is in the form of a natural source, that being the vasoactive amine/amino acid: tyramine. Tyramine is naturally produced from the breakdown of tyrosine, another amino acid which is a building block of a lot of protiens. Tyramine production is most commonly seen in the aging process of foods high in protien, like cheese and meats, as well as in fermented products like tofu, wines, and ales. I do not think it is as much an issue with nitrates and nitrites in aged meats and wines that cause migraines, but the fact that they allow meats and spirits to have a longer shelf life and this in turn allows the buildup of tyramine to occur over time that is the real problem. Tyramine also appears in some fresh foods in high amounts, particularly in fresh liver and game meats, ripe banana peels, red plums, and almonds. Nuts are another issue with aging, especially peanuts. Nuts tend to be stored for long periods of time and over that time they can build up toxins in them (as well as tyramine). If nuts are fresh they tend to be less of a problem.

Tyramine not only causes migraines, but it also causes the blood vessles to constrict (part A of a migraine) and high blood pressure. It can cause rapid spikes in blood pressure and mimick panic attacks. I am fairly convinced that I do not get emotional panic attacks, as diagnosed, but I have physical reactions to tyramine that appear to be panic attacks. High blood pressure, heart palpations, dizzy spells, vertigo, etc. Medically these are called hypertensive crisis events. Your blood pressure goes off the charts... MSG is another naturally occuring substance, but they put mountains of the stuff into processed foods, for the mere reason that humans can taste it. It is sometimes called the 5th taste bud. I get all kinds of weird reactions from MSG, from food poisoning like symptoms (doubled over with stomach cramps or vomiting), migraines, and weird creepy feeling sensations. So the natural world is not as great a place for many of us.... and we still need to avoid a lot of fresh foods in our diet (those of us that are sensitive to tyramine, that is).

An option to an elimination diet (which is pretty severe) is to keep a food diary and write down everything that you eat and how you feel for about a month. Then go back and look at how you felt, and what you ate before feeling that way. For example, circle all the times you got migraines in the previous month, and look at the foods you ate just before the migraine attack to the day previous. Lo and behold, the culprit foods are usually are unveiled. And it is not just for migraines. I found that bananas, ice cream and milk products give me asthma. Beef plain makes me sick for 24 hours. It turns out that I am allergic to beef protien. It is genetic; my grandmother had the same allergy, though she never knew it. She wound up developing a food-allergy addiction to beef. She got sick, and so she would eat a hamburger patty and get a high for a few hours, and then get even sicker. They mis-diagnosed her food allergies (common, even today) using skin tests. Skin and gut reactions for foods are completely different in most cases, and skin tests are pretty useless to determine food allergies. But they are still done... medicine is slow to change. At any rate, I found my allergy to beef by an elimination diet under the care of a naturopath. I also kept a food diary then, and I have used food diaries later in life to determine some common food reactions leading to asthma and migraines when I figured out that they both can be triggerd by certain types of foods (but they both have other triggers as well).
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  blueskies on Sun Jun 10, 2012 8:18 pm

I agree an elimination diet is pretty severe and I would not recommend it off my own bat. I saw the RPA Hospital allergies and food intolerances clinic and was put on this diet. As a result I became more intolerant to many foods than I was in the first place. I was on the full elimination diet too long I think. Not strictly the hospitals fault as I might have misunderstood.

I'm allergic to many 'natural chemicals' -- like salicylates (nature's natural insecticide) which really means I'm only able to eat a very limited type of fruit and veges. I'm also allergic to amines -- present in things like bananas and chocolate. Also glutamate, present in lots of things. I stay away from most chemicall additives, food colourings (even 'natural ones' -- eg some red food colouring comes from a bug in south america. I can't tolerate it when a lot of the population can.

I eat very naturally and very little from the supermarket though. So much in the supermarket is full of corn and corn is high in salicylates and off my list.

I've never been able to link any food with migraine. Although I can say eating too much sugary stuff or letting myself get too hungry can be a trigger.

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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  dcook60 on Sun Jun 10, 2012 8:39 pm

blue, your diet is far more restrictive than my own. kudos to you, for being able to figure it out and stick with it.

interestingly, thru many years, i've tried avoiding all those food groups you mentioned, including tyramines, amines, salicylates. nothing made one whit of a difference EXCEPT THE BIGGIE: MSG.

most people have no idea that there are at least 40 other names for msg. it is a huge deception caused by the food-processing industry. since they know that lots of folks are savvy re: msg, they call it all these other things.

they are not msg per se, but have the same effect as free-glutamate in the body. i consider this group of things my main chemical trigger. also kind of related to this is sulfites, which are in many foods. it's very hard to go out to eat, as you well know........

i wonder if you live in the u.k. or australia? because of your spelling of "colour" i suspected this, and wanted to mention that the u.s. uses far more chemical crap than other enlightened countries. so if you do live in a place other than the u.s. you are more fortunate in that way. dianne
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Re: 20 years of migraines and chronic pain- another food intolerance story

Post  blueskies on Mon Jun 11, 2012 9:08 pm

I understand. Tomatoes, for example are full of salicylates and msg. Tomato concentrates, the basis of so many foods it's unbelievable, can be highly reactive for some people. Yet, because it's tomato concentrate will not be listed on a prepared food as 'MSG.'

I have no choice but to stay on this diet so I don't get to deserve kudo, unfortuantely.. My skin is just too painful when I try to come off it for more than say, one ordinary meal, every now and then. Very occasionally I will eat out and usually get away with it because I've I am following the strict elimination diet right up to and straight after my meal in a restaurant.

However, there are many chemicals which I can react to in hours. But as I said, for me it's not migraine. It's a painful skin reaction where the nerve endings in my skin just misread what is essentially harmless as being harmful to me -- or something like that. The doctor only explained it fully to me again a month ago and I've sort of forgotten exactly how it works. To me it's all only theory anyway.

I see a psychiatrist who swears he reacts with migraine to chocolate. On the other hand, at one point, before he retired I was seeing a neurologist ,Dr James Lance, specialist in migraines (they named a wing after him in one of Sydney Australia's biggest hospitals (you were right about the spelling of colour, LOL) who was an innovator in migraine research. When I was seeing him was of the opinion that food does not cause migraine. I found that very strange. He was a highly respected researcher. His opinion was, if I remember correctly that we might get stressed about something, and in response eat a certain food, and then get a migraine. Blaming the food for causing the migraine, rather than the stress. Sorry, it's been so long since I read his book that I've forgotten how his theory exactly worked. But I could never work out why he was so strong about foods not causing migraines. When he retired from active practice he went on to do more research and I wonder if he changed his mind about the food as trigger for migraine theory. It just seemed really basic to me that if a food could help migraine (coffee -the caffeine being a vascular constrictor) why it couldn't cause it. Not the only cause, maybe but certainly one cause.

Personally, my migraine is caused by a dysfunctional Autonomic Nervous System know as Postural Orthostatic Tachycardia Syndrome (POTS)This is a disorder, they did not know about 20 years ago really but are learning more and more about each day. Nearly 30% of people with this problem suffer regular migraines, a few of us, daily ones.

I came to this forum the other day because I was overwhelmed by migraine last week and I felt very alone with it. It's been great to talk.

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