Fellow migraine sufferers

I've had migraines since around 10 yrs old, and they worsened in intensity as I got older. Mine are usually triggered by stress, hormones and low blood sugar. I had 1 last week that lasted 2 days. My doc has tried a few things on me for the last 12 years, and right now I'm on atenolol, which seems to help, but doesn't prevent them. When my migraines are bad, any kind of stimulation (noise, light, turning my head, anything really) makes me want to throw up. Luckily, I've never thrown up, though I get super nauseous. I remember the first time I had an acute attack 12 years ago and my doc gave me an imitrex shot and my brain felt like someone shocked my brain! It was horrible!

My sis-in-law suggested a chiropractor because it could mean a rib is out. I did notice that when I get them, my ribs on my right side feel bruised. I just haven't taken the time to call a chiro yet. Anyway, I do feel your pain, migraines suck!

I've had hemiplegic migraines for 30+ years, and mine are triggered by certain foods (cheese is a huge no-no for me) stress, atmospheric changes, flashing lights, and allergies--I'm severely allergic to grass pollen, and I can count on at least one migraine every June when the pollen count is high. In my late teens & early 20's, I would get 3 - 4 migraines a week, but now in my mid-40's, I'm down to a handful a year. I used to take a variety of medications to prevent them, but I had extensive allergy testing done for another issue, and when I eliminated the things I had reactions to, my migraines slowed down considerably.

For those of you who have nausea/vomiting with your migraines: have you noticed that throwing up relieves the pressure in your head, at least for a little while?

I'm 32 now and I've had migraines since I was 3. Mine are generally one sided, with aura and come with severe nausea/sickness which can very easily turn into cyclic vomiting syndrome. My triggers are many and unpredictable, like most of us

Triggers for me are 1) dehydration 2) fatigue/lack of sleep 3) tight neck/shoulders (deep tissue massage and lots of stretching work WONDERS for this) 4) hormones 5) low blood sugar 6) occasionally exercise 7) atmospheric changes 8) sometimes going from very dark into very light (like coming out of a cinema on a very sunny day).

This is my second time round of losing weight (grrrr...) so I have some perspective, migraine wise, from all sides of the process. When eating at a deficit, I find the biggest challenge is avoiding the low blood sugar which can trigger an attack - I have to be careful not to let my deficit go too low for this reason and I have to spread my calorie allowance over the day - lots of snacks. I've been experimenting with 1400 a day for a while, but my head hasn't been faring well so I think I'm going to need to up this a bit. I also find it is important for me not to exercise without eating something right before or soon after finishing, as this increases the chances of exercise induced migraine. I try to avoid lots of caffeine, not because it is a trigger, but because the painkiller which works best to relieve attacks for me has caffeine in it, so I don't like to get too used to it!

I have also learned, particularly during my childhood, to see sugary foods as a method of medication for my migraines, given the low blood sugar link. This has been a challenge when losing weight, because if I have pre/post migraine haze, it is REALLY easy to look at chocolate and plough into it because it is "medicine" rather than "food". I'm starting to win that battle now

The good thing is that when I got to a healthy weight last time round, my migraines got significantly better. Particularly when I was generally healthy and eating at maintenance levels. So I know things will get better once I'm finished losing weight, I just don't enjoy the unpredictable experience with my head while I'm losing weight...

I get them, yes. I have them as a result of a mast cell activation disorder. Lack of sleep is the biggest trigger. One really bad night, or two bad nights in a row, and it'll hit by the afternoon unless I can sneak in a nap somewhere.

Food has not had much influence on my own migraines I'd say. On headaches, definitely, but migraines not so much. But if I eat healthily, then I do seem to be more...resilient, I guess I'd say? I'll notice that I can push that envelope of how much sleep I need to have to avoid a migraine.

las07s wrote: »

I've recently been diagnosed with migraines, but have had them since I was 10 or so. Dehydration is a major trigger. Caffeine, not so much. Low quality chocolate is a bad one as well. My mother will get them randomly, and there seems to be no trigger. My sister is on a preventative medicine. Hers are triggered by bending over at the waist, chocolate, caffeine, dehydration, a hot day (Florida), or just seem to come out of nowhere. Her symptoms include confusion, memory loss (and resulting anxiety), nausea and vomiting, and loss of vision.

This seems to be a group of fellow sufferers, so I hope you don't mind if I look for some migraine answers as well. Maybe you all have experienced what I'm experiencing as well. I had been suffering from sporadic acquired horizontal nystagmus and a minute case of vertigo (the world didn't spin, I just often could not determine the position of my head on my shoulders) since early April. Last month (June 27), I had a typical aura migraine (first aura migraine for me), with loss of eyesight and peripheral aura, severe pain in the temple and pressure behind forehead and intense nausea, but many symptoms have not gone away even today. For two weeks after my migraine, I had an awful pressure behind my forehead, temples and sinuses. Even now, the pressure is a mild nagging behind my forehead, and I still have sensitivity to light. My body wass off balance (standing, walking, sitting, etc.) and my vertigo has been getting progressively worse. Three times in the past week, I have been caught unaware while sitting quietly, sleeping, and walking by severe vertigo. I have fell down while walking, and was unable to sit up on my own. It lasts about 30-45 minutes. All the time now, I have trouble concentrating. Sometimes I find myself slurring my speech like I'm drunk. My doctor has already prescribed me B12 and ferrous fumarate, since I was a bit on the lower side of the normal range according to my last blood test, and I take magnesium and probiotics. I've had a neurological exam (could not provoke nystagmus) and balance tests. The balance tests included the moving platform test, the projector screen/camera goggle test, the hot/cold air in my ear test, positional vertigo test. So far, I know that I failed the platform test (I mean, thank God for that harness) and am waiting on my projector/ear/positional vertigo test results. I'll be getting an MRI this week, and have been preemptively scheduled for vestibular therapy, just in case it's an inner ear issue. Has anybody suffered from these symptoms? How did you treat it?

I never suffered those particular symptoms other than the word slurring. I also experienced word loss and absences. This was before my migraines were treated though.

I'm glad you're getting an MRI.

What's your current treatment protocol for your migraines?

(Sorry I jumped in on this, I'll introduce myself with my story soon!)

For anyone who is suffering from migraines and it's getting worse and there is no answer for why it's happening, I wanted to pass on the name of a disorder that can cause migraines that your doctor has likely never looked at, just in case it may help a couple people who end up reading this. I know that this is certainly not going to apply to everyone, but just offering this information up for anyone who it might help, you know? Anyone reading this, or maybe even a fellow migraine sufferer that someone reading this might know.

There's a disorder that's considered very rare (a mast cell activation disorder called mast cell activation syndrome - MCAS) that experts believe may be more 'rarely diagnosed' than actually 'rare,' because so few doctors are aware of it. The estimates I've heard is that it might affect up to 6% of the population, which is five times more than celiac disease does.

Migraines from this can be triggered by many things, although more common triggers in my experience(for those with this disorder) are from certain foods, pollen, or smells, from stress/excitement or heat or cold, or from exercise or chemical exposure.

The disorder can also cause allergy symptoms, like hives and anaphylaxis, but it doesn't ALWAYS cause that. When it does, those folks are the ones more likely to be diagnosed. The ones more likely to be missed, in my experience, are the ones who have more physical symptoms that don't involve hives and rashes and itching. Diagnostic criteria for this can be found here: http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf

That article has a list of symptoms in a chart part way down - people with this disorder may just have a few of the symptoms, but not all, or even most. There is literally no symptom that they 'must' have, because the disease is pretty wacked and variable when it comes to symptoms (mast cells can release over 200 substances, and symptoms vary depending on which substances are released, and what they combine together to do to the body).

If this sounds like something that rings a bell and you wish to explore it further, I'd highly recommend joining a support group and getting information on an MCAS knowledgeable doctor in your area to test you (face book has some, if you search for mcad, mcas, mast cell disorder, or mastocytosis). Even doctors who know about mast cell disorders tend to believe that MCAS requires the same testing, and will have the same results for a positive diagnosis, as a more well known disorder called mastocytosis. This is not true at all and can result in a misdiagnosis. So finding a knowledgeable doctor is important.

And not easy, unfortunately. In my state, we have a support group to keep each other informed, and we keep a list of mast cell aware doctors so people can know who to go to. We've currently only found one practice and two doctors, in the entire state, who even do the correct tests for this. So yeah...finding a knowledgeable doctor is key.


Again, sorry for those that this doesn't apply to! Just wanted to share this because this information is not likely to just pop up in regular searches, and has no drug companies advocating and spreading the word of its symptoms or existence, so some of us who have the disorder share it periodically for anyone it might benefit from the knowledge.

Hoping everybody has a good day today and NO migraines with it.

PeachyCarol wrote: »

I never suffered those particular symptoms other than the word slurring. I also experienced word loss and absences. This was before my migraines were treated though.

I'm glad you're getting an MRI.

What's your current treatment protocol for your migraines?

(Sorry I jumped in on this, I'll introduce myself with my story soon!)

Hi! As of now, I take 800 mg of magnesium a day, B12, ferrous fumarate, drink lots of water (10+ cups/day), avoid chocolate and flashing lights, and sit with the lights off at the office with my monitor on the lowest back light possible (I still have light sensitivity a month later). I went off of estrogen birth control after that classic migraine, and I finally got my Mirena IUD yesterday! I am on a low sodium diet (1500~mg). I also have Midrin for when a migraine strikes. As for balance? I just try not to fall down... it doesn't always work LOL. I am super careful about turning corners or looking quickly in any direction. I'm slow to get out of chairs/bed. I also don't look down for any reason unless I am standing still. I don't stand with my feet close together or close my eyes while standing. My boyfriend is helping out as well. I can run, as long as I have something that is always in the same place in front of me, so he jogs just ahead of me so I can focus on the back of his head . So far, I've only fallen down from vertigo while running once, and 45 minutes later I was back on my feet. NBD if you think about it.

My MRI is tomorrow and I should be getting my balance test results back this week (positive thinking).

Mine is chronic and started 7 years ago, left side and still feel it. I take propranolol plus 250 of magnesium daily and it keeps the pain down around a 2. hormones make it come back full power. Then I need my prescription or a shot of morphine. They are not even close to a headache. Those who have not suffered don't understand. I cannot use anything other than sugar. That includes stevia and such. All of those trigger instant severe ones. Started exercising hoping that helps too. Don't want any more drugs.

Yup! I actually have them with facial paralysis when they are very bad (so much so that docs though I had a stroke at first), as well, but mine were -- unfortunately -- only triggered my hormones. Going on continuous birth control so I didn't have the usual hormone swings cleared them up. I'd occasionally get migraines still, but maybe one every few months versus the continuous week or migraine I used to have around my period.

About to go off BC completely and am not looking forward to the return of migraines.

I've gotten binary migraines since hitting puberty, so I feel your pain. They have lessened since I started taking magnesium tablets and a B complex, but I still get a few a month. Thankfully, my job is understanding and allows me to work from home on these days, but I'll be honest, I don't really get anything done. I do the required jobs and let everything else slide until I feel better.

I've tried Imitrex and the side effects were worse than the migraine. I've tried every OTC pain medicine that I could find. The only things that seem to help are ice packs on the back of my neck and forehead, a spoonful of peanut butter, and sleeping it off.

If anyone has any other suggestions, please let me know! I'll try anything!