Anyone Have Bad Headaches?

[julie5914]

Hi guys,

My MRI was ok, thank goodness, but the reason I had it was one particularly horrible headache that made me want to die. It was likely a migraine, but I was wondering how many others of you have headaches from time to time like this, maybe when glutened (they said my ttg was still at 20). I don't get an aura - in fact I get no warning - they wake me up at 3 or so in the morning and I can't fall back asleep or do anything. If you have migraines, is this what they are like. Pain was all on my left side from just above my eye down to my neck, with my neck hurting. My left side felt numb and I felt nauseated. If this was from gluten, I have underestimated the power of it as pure poison.

Thanks, Jules

[frenchiemama]

I get migraines, but what you're describing sounds more like a cluster headache to me. My mom gets those (along with other severe symptoms, yet tested neg for celiac disease).

When I get a migraine, I have warning. I can feel it coming on and I do get an aura. I get very nauseated and vomit a lot, I get a "carsick" feeling from sounds (don't ask me how noise can make you nauseated, but it can) or from looking at things. I have trouble getting my words out in the correct way and I have a very hard time concentrating. It's also very painful.

I would look into cluster headaches and see if the descriptions sound like you, it does sound like what my mom gets.

[nettiebeads]

Hi guys,

My MRI was ok, thank goodness, but the reason I had it was one particularly horrible headache that made me want to die. It was likely a migraine, but I was wondering how many others of you have headaches from time to time like this, maybe when glutened (they said my ttg was still at 20). I don't get an aura - in fact I get no warning - they wake me up at 3 or so in the morning and I can't fall back asleep or do anything. If you have migraines, is this what they are like. Pain was all on my left side from just above my eye down to my neck, with my neck hurting. My left side felt numb and I felt nauseated. If this was from gluten, I have underestimated the power of it as pure poison.

Thanks, Jules

<{POST_SNAPBACK}>

I think it's a migraine. I get them. I think the four criteria are pain on one side of head, nausea, sensitivity to light, and sensitivity to noise. If you have two of these it's a migraine. Some people have triggers for them - red wine, nitrates (think over processed meats like bologna) chocolate and salt. Odors can set me off - some perfumes and vinegar. Occasionally I'll get an aura, but not always. I finally went to my dr about this - he ordered a CT of my brain. It came back normal, my husband wants a second opinion! My dr. thinks it's related to my premerin, so he reduced the dosage. Hope these helps answers your questions - and believe me, I can understand the wanting to die part. The only thing you can do is lie still in a dark room, but the pillow feels like a slab of concrete and makes the pain worse. Have you done a journal to see if there are gluten-free foods that might be a trigger for you? Hope you don't get any more.

[skbird]

I get migraines and they are often on one side, usually behind my left eye. I had a really bad one a year ago there and it felt like something the shape of a worm or something was swelling behind my eye, some burning thing that was like a cattle brand or something. It made my neck ache. The worst was the first day when I was pressing my face into ever pillow, ice pack, whatever I could. The residual pain lasted for 13 days. Ever since then, nearly every migraine I have had is in the same location, though none have been as bad as that one. I have had them my whole life but this was the first one that marked it's territory. I have heard that they can form a pattern in your head and with proper training (though I don't know what that is, biofeedback or something?) you can stop that from happening. I really don't know beyond that.

I don't have any warning with my migraines, they just hurt. I wake up with one or suddenly realize one has crept up on me. I don't get auras, don't have sound issues - though I am very sensitive to sound, it's not that much worse when I have a migraine, and I'm about the same with light.

My migraines seem to be 80% related to food, especially if I have indigestion or stomach problems, I am a lot more likely to have a migraine. Or if I eat foods I'm sensitive to, though I'd not call them triggers per se. I rarely have nausea with the migraines, either. Mainly just pain that impedes my ability to think or even stand upright sometimes (motion can really make them worse). I do well with triptan drugs like Imitrex and Frova but they are $$$. Still, it's worth it to me to pay the $16 a pill to make the pain stop. And luckily with me I have found they will work most of the time even after the migraine has been going on for a while, not requiring me to take one immediately when it starts.

Gluten causes some of the worst migraines in me though. I'm sorry it seems to be doing the same for you... but you are not alone.

Stephanie

[tarnalberry]

It could be a migraine. (They are often one sided, don't always have a warning, and are often accompanied by nausea.) I was recently DX'ed as having migraines (not often, thankfully), and my doctor noted that *many* of the headaches people have actually are migraines, but they don't realize it. (The main characteristic being the blood vessels in the brain are expanding in a migraine, not contracting.) I would urge you to talk to your doctor about it, and if it is a migraine, consider trying migraine medication. My god that stuff is wonderful when it cuts off four days of feeling like really really bad crap.

[skbird]

I am so with Tiffany on this one - I don't usually care for meds but the triptans I mentioned are god sends. And not narcotic, don't feel all messed up at all... wow...

I can't believe for 30 years I suffered...

Stephanie

[jknnej]

I get them, too. Migraines, that is. Nausea, light sensitivity, noise sensitivity. In fact, sometimes I get the other symptoms before my head starts to hurt and that's how I know i have a migraine. It's like my whole body has the flu.

thank GOD for Relpax migraine medicine. it does take about two hours for me, but once I take it my headache is gone. I can actually function, although I still feel kind of "weak." but i can go to work, etc. The nausea and other symptoms disappear, too. It might make you feel "weird" the first few times you take it, but after that you're good to go!

My mom suffered without meds for 30 years; poor woman! Imitrex and Relpax were just being discovered when she had already suffered for so long.

I thank the dear lord for those meds b/c without them, I'd be missing a lot of work and suffering needlessly!

[bluelotus]

I too get very bad headaches behind my right eye and it is associated with gluten for me. After being glutened, they will occur every day for about a week and a half.

[taweavmo3]

OMG, the migraines. My mother has them, I have them, and I pray my daughter never has them. They are terrible, worse than any pain I've ever had, and I've had 3 kids!

I used to get them w/out warning....then they changed after a while. I started getting the "halo", or I would start seeing spots, then the full blown migraine would hit. They were also one sided, and there was nothing to do except lay in a dark, quiet room in misery. One doctor tried me on beta blockers to prevent the headaches, but that didn't really work. Once I had my first child, they lessened in severity. My migraines are more hormone related I think, after each child, I had fewer migraines. I still get headaches right around that time of the month, but they are much more manageable. Imitrex is worth it's weight in gold if I do get a migraine though.

The pain of a migraine is unbearable.....I hope you find some relief soon, just reading your post and remembering the pain made my stomach churn!

[Guest gfinnebraska]

I get a "hormonal migraine" like you described. It isn't associated with gluten but with my monthly cycle. NO fun at all!! Around the same day every month I am completely wiped out ~ can't function. Unfortunately headaches like you described are caused by many different things. The best thing to do is to keep a journal and find a connection between your headaches and what you are doing/eating/time of the month, etc.

[Jnkmnky]

I've had them and they're horrible. I quit caffeine, gluten, dairy *mostly*, and have no more soda--- only water all day. I haven't had one migraine since. THANK GOD! They're so bad, I'd have given up my right arm to be rid of them. Try drinking no less than 4 bottles of water a day along with NO caffeine. Seriously- none. It constricts the blood vessels in your brain. Your brain is something like 80% water, so stay hydrated. I cut out all msg and as a result, I guess I'm consuming very little - if any- nitrates. Also, a little exercise everyday. That keeps the blood flowing. These things may seem like a pain in the a$$, but it sure beats medication if you can avoid them. I'm not a fan of medication for anything.

[Guest BellyTimber]

I once had a headache for two years - at the back of the head low down. Really got to me.

Ever since then have been extra sensitive to smells, they can make my skin creep, also to noise.

I think I have a lot of auras, also headaches, not always in tandem.

If I have a headache I usually have a pain in one hand or arm at the same time. Sometimes it is behind an eye, very sharp.

Never been woken up by one yet.

Get well soon!

[bluelotus]

Yes, smells get me too. My gym was repainting around the track and have been for a week. Everytime I went jogging, I'd get a headache. I've asked several times that they put fans up, but to no avail. I sometimes get "silent" migranes too, with only eye problems (can't see/spotty vision out of the periphery), these instances may or may not be followed by a headache.

[Claire]

Lots of pain and misery accounted for here!

Does anyone have silent migraines?

I come from a family of migraine sufferers. All had the classic symptoms except my daughter who has the silent variety and now the neurologist is attributing one group of my symptoms to the silent migraine - apart from whatever is the final termination for the cause of ataxia. Claire

[Guest BellyTimber]

Claire and Bobcatgirl, what are silent migraines? Are there ones that make noise?

[Claire]

Claire and Bobcatgirl, what are silent migraines?  Are there ones that make noise?

<{POST_SNAPBACK}>

Does sound funny I guess. Are you asking for a serious answer: Silent migraine is a migraine attack without any pain - called acephalgic migraine. These do have symptoms and these do vary. Sometimes there is the aura, there can be dizziness and nausea (in the extreme in some cases). There is also a silent migraine that primarily effects vision - very disorienting and dangerous. I have a daughter who has had four or five attacks of this. Scary. Claire

[tarnalberry]

Does sound funny I guess. Are you asking for a serious answer: Silent migraine is a migraine attack without any pain - called acephalgic migraine.  These do have symptoms and these do vary. Sometimes there is the aura, there can be dizziness and nausea (in the extreme in some cases). There is also a silent migraine that primarily effects vision - very disorienting and dangerous. I have a daughter who has had four or five attacks of this. Scary.  Claire

<{POST_SNAPBACK}>

That's my primary type - silent, of the dizziness/nausea variety. (My first two were vision based... kinda like looking at a TV when there's just "snow" or "static" on the screen and you can't see anything. I had to keep my hand on the wall to walk between classes as it happened during senior year in high school!) It's not so much a real HEAD ache (though my head certainly doesn't feel comfortable, it's not pain the same way that you might normally think of a headache), but the disorientation, dizziness, and nausea that just puts me down for three or four days. If it happens at work, I make my husband drive me home, because I do not feel in any way that it would be safe for me to drive - far too disorienting. It's like the mental feeling of dizziness and nausea and disorientation I get when glutened, but magnified by a factor of at least 10, at its best, 100 at its worst. Lying *totally* still for a number of hours in a cool, dark room is pretty much mandatory at that point.

[julie5914]

Yeah, these ones that I get at night don't last for several days or even hours though. They last about 45 minutes and there is no lying down and resting. Definitely no sleeping. Usually it is writhing and grabbing my head and moaning. Those things make me think it is cluster (at least the ones at night). But clusters are called clusters because you go through phases where you get them every day or a few times a day for a few weeks and then have a time of remission. I don't get that. I get these as usually isolated events, separated by weeks.

I have had headaches, one side, with a little nausea, fluid retention, and light sensitivity, that creep up on me too though. They range from dull pain to wanting to take strong meds and go lie down and try to sleep. Those last about all day or a few days, but compared to this wake-me-uppers, they're nothing. In short, I'm confused.

With both kinds, I don't get pain in my face except my eye. It is behind/above my eye, making me feel like it's swollen shut. Then it is up into my forehead and whole left side of my brain down to brain stem, back of neck. I never feel pain in my check or chin or anything like that. Perhaps they are all migraine and I am just asleep for the winding up part of those that wake me up and miss my window to take drugs, so they seem much worse than the others.

[melhopkins02]

I suffered from Migraines for several years (before knowing that I had celiac disease). They gradually got worse over time and towards the end of last year, I was having 2-3 migraines a week. Every week!! Talking about wanting to die sometimes. What a terrible life I was living. I saw neurologist, specialist, etc...until finally I came across someone who sent me in the right direction to the doctor that finally told me I had celiac disease. AFter several weeks on my diet, no migraines. NONE!!! It changed my life in so many ways! In the past 3 months, I have had 3 little headaches, when I messed up with my eating (accident) but nothing like before. Maybe you are messing up with your eating and don't know it. It's just amazing how they went from 2-3 times a week to none when I changed my diet. Good luck though....It's TERRIBLE!!!

[DonnaD]

I think my daughter may have been having migrane headaches after reading the posts on this topic. Her symptoms are:

Pain above her eyes, feeling sick, seeing 'tetrus' type bricks in many colours falling down over her eyes even when they are shut. The first one a few months ago scared her to death and she had a terrible panic attack. She has to be in a dark room until they are gone. They seem to last 1 hour or so and she gradually feels better. She had some bad ones in the summer while eating gluten prior to her 2nd biospsy. I didn't put two and two together until recently.

Since being gluten-free she seems to be having visual disturbance only when she is reading, she says the words 'swim' over the page, like when in school she put paint on paper and blew out a pattern with a straw. This is how she describes it. We saw an optition yesterday to rule out eye problems with reading and she does not need glasses or have any other eye problem except slight Brown's Syndrome (one pupil does not go up as far as the other leading to double vision when she looks up. It is caused by a problem with a tendon in the eye.)

It would be very interesting if anyone else has experienced these symptoms.

[RiceGuy]

I've had them and they're horrible. I quit caffeine, gluten, dairy *mostly*, and have no more soda--- only water all day. I haven't had one migraine since. THANK GOD! They're so bad, I'd have given up my right arm to be rid of them. Try drinking no less than 4 bottles of water a day along with NO caffeine. Seriously- none. It constricts the blood vessels in your brain. Your brain is something like 80% water, so stay hydrated. I cut out all msg and as a result, I guess I'm consuming very little - if any- nitrates. Also, a little exercise everyday. That keeps the blood flowing. These things may seem like a pain in the a$$, but it sure beats medication if you can avoid them. I'm not a fan of medication for anything.

I totally agree. That MSG has certain known effects on the brain which can cause migraines in a lot of people. It depends on the person and the amount I guess. Caffeine is another culprit. I've never liked coffee nor caffinated drinks, so that wasn't an issue anyway. But I did find it helped to increase the amount of water I was drinking.

Here's the ones which I found responsible for most of my now former headaches:

All forms of yeast, including dried, extracts, hydralized, autolyzed, etc.

All refined sugars.

Thank goodness I eventually stumbled into it, though it took like ten years. The doctors were no help as usual. At the time, I hadn't made the connection to gluten, but cutting out yeast did mean a reduction in the gluten I was consuming. However, I still was eating pasta by the ton, and sometimes I wonder how I managed so long before my gut finally gave up. The remainder of my headaches diminished as I started to cut the wheat stuff.

It turns out that companies using MSG in their products sometimes rename it to some form of yeast. This is an ever growing tactic, especially for so-called "health" foods! Here's just one link on this: Open Original Shared Link Just Google for this stuff and you'll find loads more.

[julie5914]

I should update this - The headaches have gotten better, though I still get them. I cut out dairy almost 2 months ago. I had a medical massage a few weeks ago, and when she pressed on some trigger points to relax my shoulder and neck muscles (which are chronically tight, the tightest she'd ever felt, she said, and often feel like bone), it reproduced the head pain. Can't explain it, but it was the exact pain, right over the eye and through the whole side of the head into the neck. Crazy! So now I am taking extra care to stretch and keep those muscles loose!