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Question For Other Migraine Sufferers

Fire Fairy

By Fire Fairy
in Coping with Celiac Disease

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Fire Fairy Enthusiast
Fire Fairy
Posted

Yesterday I felt blah. I forgot to eat breakfast, I drank half my normal coffee and I was nauseous so I took my nausea medication. By the time I went to Church at noon I was feeling really blah. I came home and ate a bowl of Chex with almond milk and an orange. I never felt like cooking so I ate corn chips and drank a V8 later for a snack and for dinner I had a sandwich. By 7pm I wanted to call it a day so at 8pm I went to bed. Sometime after midnight I still wasn't asleep and my head started to hurt, just a little. So I took my Imitrex and fell asleep. When I woke up I felt great. So my question is was this a migraine all along? Was the pain not as severe because I'm off gluten? Lately I only seem to get migraines after ingesting gluten but I get pain pretty quickly after ingesting the gluten. Any thoughts?

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summerteeth Enthusiast
summerteeth
Posted

I've been a migraine sufferer since age 5. I only get them now when I ingest gluten - it is actually one of my later symptoms. They really aren't nearly as severe or long lasting as they used to be (pre-gluten free). I remember they would last for days and would get so bad I would vomit. Not anymore - they rarely last longer than one night (I usually need a lot of sleep for them to go away).

I'm thinking your migraines are gluten-related, also.

georgie Enthusiast
georgie
Posted

Just make sure it 'is' a migraine and not Antiphospholipid Syndrome ( APS) or Hughes Syndrome which affects 1:100, and is an autoimmune disease of the blood making it thick and sticky and causing migraines and strokes.Autoimmune diseases like to come in groups. Once you have one you are more likely to have others.

Open Original Shared Link

Open Original Shared Link

YouTube. The stroke victim here was in her 20s...

Do you get less migraines if you have a trial of Heparin injections ?

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

"Do you get less migraines if you have a trial of Heparin injections ?"

I've never heard of any of this. My Grandmother on my father's side had multiple strokes so that is something I fear especially because of my migraines. I and my Dr suspect I've had some mini strokes (TIA's). Thank you for posting this. I will have to talk to my Dr about it.

georgie Enthusiast
georgie
Posted

I started treatment 2 weeks ago after yet 'another' migraine with loss of vision. I think my Dr may have just saved my life. I have had years of these headaches and migraines... I have the skin discoloration too and the assoc autoimmune diseases. It pays to have the blood test and check - remember that there is much research being done into the sero negative APS that does not show in blood tests ... and in case of doubt or equivocal results - a trial of aspirin or heparin injections... Good luck. The lifting of the fatigue and headache has been amazing for me.

jenngolightly Contributor
jenngolightly
Posted

Yesterday I felt blah. I forgot to eat breakfast, I drank half my normal coffee and I was nauseous so I took my nausea medication. By the time I went to Church at noon I was feeling really blah. I came home and ate a bowl of Chex with almond milk and an orange. I never felt like cooking so I ate corn chips and drank a V8 later for a snack and for dinner I had a sandwich. By 7pm I wanted to call it a day so at 8pm I went to bed. Sometime after midnight I still wasn't asleep and my head started to hurt, just a little. So I took my Imitrex and fell asleep. When I woke up I felt great. So my question is was this a migraine all along? Was the pain not as severe because I'm off gluten? Lately I only seem to get migraines after ingesting gluten but I get pain pretty quickly after ingesting the gluten. Any thoughts?

It's not necessarily something more scary than a migraine.

Sometimes you can notice symptoms of a migraine coming on and they may be particular to you. My suggestion is to keep a food log. If you can track your food and then have these warning symptoms, you might be able to catch the offending food. For me, I can tell a migraine is coming soon when I start getting dizzy, even when sitting down and reading a book. The migraine won't show up immediately, but I know it's time to take an Imitrex. There are other warning signs, too, but I think they're so personal that we won't share them precisely. I've never had your symptom of feeling blah, and you've probably never had my "Alice in Wonderland" symptom where I feel extremely large in comparison to the things around me - like I've taken a bite of the "eat me" cake.

You should definitely go to the doc to check it out if you're worried. I've had lots of tests to make sure my head's okay, my eye's are okay, and my blood is okay.

Good luck!

MelindaLee Contributor
MelindaLee
Posted

Just make sure it 'is' a migraine and not Antiphospholipid Syndrome ( APS) or Hughes Syndrome which affects 1:100, and is an autoimmune disease of the blood making it thick and sticky and causing migraines and strokes.Autoimmune diseases like to come in groups. Once you have one you are more likely to have others.

Open Original Shared Link

Open Original Shared Link

YouTube. The stroke victim here was in her 20s...

Do you get less migraines if you have a trial of Heparin injections ?

Thank you for sharing this. I have never heard of this, and I appreciate being educated on it.

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AmyE Newbie
AmyE
Posted

I had dealt with intense chronic migraines for 8 years before I went gluten-free and now I only get them when I get cc'd and they occur about 2-3 hours afterwards and I can typically fend them of with an OTC (which was unheard of before) and instead of lasting for days they might just last a few hours!! There is hope!!!

bigbird16 Apprentice
bigbird16
Posted

After I went gluten free (and eventually dairy and soy free) my migraines not only decreased drastically (20+ days/month to 2-4 per month) but the warning signs changed as well. I went from a buzz at the left side base of my skull, Alice in Wonderland feelings, extreme clumsiness (dropping things, falling), and numbness on my left side to just feeling blah, a little queasy, irritable, fatigued, and a bit of tightness in the old buzz spot. I can also wait longer before popping my pill to make sure it's a migraine and not just the blahs or being overly hungry or tired. I take Imitrex for my migraines. The doctor told me that Imitrex won't work for anything other than a migraine, so if it works and one feels great after taking it, it was a migraine. Extreme stress, cc, and a few particular foods (like anchovies and avocados) seem to be the only triggers for me now. If I'm cc'd with gluten or dairy, the reaction is pretty quick--under a half hour before I know I've been bit.

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

My migraines have been much better since going gluten free November 2nd. I had been having around 16 days of migraine per month. In December I had 1, in January I had 3. I've now had 3 days of migraine in February. Usually I can track down a possible CC but not on the day in question. Maybe it was a wayward crumb. The thing that really bothered me was that since going gluten free the head pain had started arriving very quickly (an hour or so) after consuming gluten, but the migraine Sunday started with hours of feeling blah before the pain finally started.

I too take Imitrex. My Doctor was very worried I was taking too many last time I went in. The package says they have never studied taking more than 4 pills in a month and I was taking at least 9. Imitrex is the only thing I found to relieve the pain.

bigbird16 Apprentice
bigbird16
Posted

My migraines have been much better since going gluten free November 2nd. I had been having around 16 days of migraine per month. In December I had 1, in January I had 3. I've now had 3 days of migraine in February. Usually I can track down a possible CC but not on the day in question. Maybe it was a wayward crumb. The thing that really bothered me was that since going gluten free the head pain had started arriving very quickly (an hour or so) after consuming gluten, but the migraine Sunday started with hours of feeling blah before the pain finally started.

I too take Imitrex. My Doctor was very worried I was taking too many last time I went in. The package says they have never studied taking more than 4 pills in a month and I was taking at least 9. Imitrex is the only thing I found to relieve the pain.

Yeah, for me they've changed so much from what they were that's it's hard to tell sometimes if it's really a migraine or just feeling plain cruddy.

My doc was concerned with me taking more than the 4 pills per month, too. He doesn't want to hear about dietary fixes or how the migraines have morphed, and says food has nothing to do with what's going on in my head. He thinks daily drugs like topamax or verapamil are the best way. (Need a new doc.)

I've also seen some improvement since starting sublingual B complex.

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

Yeah, for me they've changed so much from what they were that's it's hard to tell sometimes if it's really a migraine or just feeling plain cruddy.

My doc was concerned with me taking more than the 4 pills per month, too. He doesn't want to hear about dietary fixes or how the migraines have morphed, and says food has nothing to do with what's going on in my head. He thinks daily drugs like topamax or verapamil are the best way. (Need a new doc.)

I've also seen some improvement since starting sublingual B complex.

I took Topamax for several years and my migraines just got worse. My Dr has been very good about insisting I need to learn about my own health. Years ago when he started treating me for Migraines he gave me a reading list. He didn't give me nearly enough info when he suggested I might be gluten intolerant, unfortunately that visit was rushed. He did send me to check out the gluten free mall which in turn lead me here. :)

I'm not taking extra B vitamins, I probably need to look into them. :)

bigbird16 Apprentice
bigbird16
Posted

I took Topamax for several years and my migraines just got worse. My Dr has been very good about insisting I need to learn about my own health. Years ago when he started treating me for Migraines he gave me a reading list. He didn't give me nearly enough info when he suggested I might be gluten intolerant, unfortunately that visit was rushed. He did send me to check out the gluten free mall which in turn lead me here. :)

I'm not taking extra B vitamins, I probably need to look into them. :)

LOL Topamax=Dopeymax. I lasted about three weeks on Topamax. Kept falling asleep at traffic lights and at work, worse than when I was on a fully glutenous diet. Then one day I got lost going home from work. There are a total of four turns on my route home, and the main part of the trip is DC's Beltway, which is one big circle. Later that day I had a major hysterical meltdown at my dance company's rehearsal for no reason whatsoever and had to have someone drive me home, because I was afraid I'd get lost again. I stopped the Topamax immediately. The drug didn't do anything for the migraines, but it did reduce the auras.

It was my dad who suggested that I might be gluten intolerant. I was talking to him after a killer three-day migraine (as I munched on a piece of buttered whole wheat toast) and said there seemed to be a connection between pizza and headaches; he said my birth mother had some kind of wheat allergy and I had problems as a baby. I didn't know anything about gluten but decided to give up wheat to see if I felt better, looked at the toast, tossed it in the trash, and made a bowl of rice. It's awesome that your doctor is so encouraging! :)

FooGirlsMom Rookie
FooGirlsMom
Posted

Another migraine sufferer here.

I did find that going gluten-free helped. I also had to cut out soy (except Lecithin). That helped as well. The only time of the month now that I have to be really careful is right before my monthly cycle. The hormones cause them. If I avoid chocolate and too much sugar/carbs during that time, I can usually get by with 1 day or maybe 2 that something as simple as ES Tylenol will get rid of (hey imagine that!)

FooGirlsMom

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

LOL Topamax=Dopeymax. I lasted about three weeks on Topamax. Kept falling asleep at traffic lights and at work, worse than when I was on a fully glutenous diet. Then one day I got lost going home from work. There are a total of four turns on my route home, and the main part of the trip is DC's Beltway, which is one big circle. Later that day I had a major hysterical meltdown at my dance company's rehearsal for no reason whatsoever and had to have someone drive me home, because I was afraid I'd get lost again. I stopped the Topamax immediately. The drug didn't do anything for the migraines, but it did reduce the auras.

It was my dad who suggested that I might be gluten intolerant. I was talking to him after a killer three-day migraine (as I munched on a piece of buttered whole wheat toast) and said there seemed to be a connection between pizza and headaches; he said my birth mother had some kind of wheat allergy and I had problems as a baby. I didn't know anything about gluten but decided to give up wheat to see if I felt better, looked at the toast, tossed it in the trash, and made a bowl of rice. It's awesome that your doctor is so encouraging! :)

I took Topamax for three years or was it five? Let's put it this way, thankfully nothing I need to remember happened during that time. At least I hope it didn't. It really messed up my short term memory. I'd be in the middle of doing something at work and completely forget what I was doing. In fact a few times I undid my own work.

Buttered bread I used to crave it before I went gluten free.

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

Another migraine sufferer here.

I did find that going gluten-free helped. I also had to cut out soy (except Lecithin). That helped as well. The only time of the month now that I have to be really careful is right before my monthly cycle. The hormones cause them. If I avoid chocolate and too much sugar/carbs during that time, I can usually get by with 1 day or maybe 2 that something as simple as ES Tylenol will get rid of (hey imagine that!)

FooGirlsMom

It was actually during my cycle that this occurred. I may need to drop the soy as well. I'll have to go over my food journal and check for it and sugar/carbs.

jenngolightly Contributor
jenngolightly
Posted

I took Topamax for three years or was it five? Let's put it this way, thankfully nothing I need to remember happened during that time. At least I hope it didn't. It really messed up my short term memory. I'd be in the middle of doing something at work and completely forget what I was doing. In fact a few times I undid my own work.

Buttered bread I used to crave it before I went gluten free.

I've taken Topamax for 11 years. It's a wonder drug for me. I certainly have some of the side effects, but I've learned to adapt and my close friends and family have, too. The short-term memory thing is the worst, but it's better than biweekly migraines. ;-) I've been thinking of backing off now that I've been gluten free for a while, but I'm afraid of the debilitating headaches. It would be interesting to see how different I'd feel off of Topamax. It's worth it to me to have the side effects. To each her own.

Kate79 Apprentice
Kate79
Posted

Yesterday I felt blah. I forgot to eat breakfast, I drank half my normal coffee and I was nauseous so I took my nausea medication. By the time I went to Church at noon I was feeling really blah. I came home and ate a bowl of Chex with almond milk and an orange. I never felt like cooking so I ate corn chips and drank a V8 later for a snack and for dinner I had a sandwich. By 7pm I wanted to call it a day so at 8pm I went to bed. Sometime after midnight I still wasn't asleep and my head started to hurt, just a little. So I took my Imitrex and fell asleep. When I woke up I felt great. So my question is was this a migraine all along? Was the pain not as severe because I'm off gluten? Lately I only seem to get migraines after ingesting gluten but I get pain pretty quickly after ingesting the gluten. Any thoughts?

I used to have the exact same symptoms before going gluten-free - low level headache and blah (usually about 10 days a month) with horrible migraines 3-4 times a month. Since going gluten free, both have almost completely gone away - and I can usually pinpoint them to a cross-contamination issue when I get either one. I think the low-level headache is definitely a type of migraine, perhaps arising from a small amount of cross contamination. For example, the last time I got a low-level headache, I realized a gluten free salad dressing I had eaten was processed in a facility that processes wheat.

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

I used to have the exact same symptoms before going gluten-free - low level headache and blah (usually about 10 days a month) with horrible migraines 3-4 times a month. Since going gluten free, both have almost completely gone away - and I can usually pinpoint them to a cross-contamination issue when I get either one. I think the low-level headache is definitely a type of migraine, perhaps arising from a small amount of cross contamination. For example, the last time I got a low-level headache, I realized a gluten free salad dressing I had eaten was processed in a facility that processes wheat.

I found out one place I've risked gluten...my nail polish. It had gluten in it, and I'm very rough on my polish so I've no doubt swallowed some on occasion. It's amazing all the pitfalls I'm finding. But I'm learning!

Thank you to everyone who has responded I'm going to ask my Dr about Hughes when I go back, just to be safe.

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