Fellow migraine sufferers

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!

Sunnysided1 wrote: »

You should try magnesium. Low magnesium levels can cause migraines and headaches. You can find a lot of information about this.

I actually take magnesium supplements. I started to help with muscle recovery but I do wonder if they've had a positive impact on my migraines. I have noticed that I often having been consistent with taking it when I get a migraine, but that's often related to that I'm also sleep deprived etc so it's hard to be sure of the correlation.

MelissaH0910 wrote: »

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?

Ohh flashing lights! Yes. I couldn't deal with the strobe lights in clubs (back in the days that I went to clubs), I would instantly want to vomit. And on the vomiting topic, no it doesn't relieve the pressure in my head. It makes it worse. Once I start vomiting I don't stop, which is why I usually end up hospitalized. I've had truly awful ones where the vertigo is too bad for me to bend over the toilet and I've just ended up propped up in the shower vomiting everywhere and wondering whether my head is actually splitting open.

I have migraines that have recently gotten a lot worse (last month I went to the minor emergency twice and the emergency room once). Before, I got them rarely, and they didn't last very long. I don't know what my triggers are yet. I've got an appointment with a neurologist next month, so maybe I'll find something out. For now, I'm taking Sumatriptan, and it seemed to help during my last bad migraine (It only lasted for a few hours and I only vomited once).

In response to the throwing up relieving pressure, it doesn't for me. The three migraines I had last month resulted in me throwing up dozens of times, and it sure didn't make me feel any better.

Maleficent0241 wrote: »

I have basilar type migraines, which are like hemiplegic minus the paralysis. I also have chronic vertigo and nystagmus from a head injury and the migraines and it makes it very hard to compensate long term so my balance is terrible. Botox does the most for me preventative wise, but I still pass out a lot and lose speech abilities. It's a sucky way to live, but I refuse to let them steal more of my life than they have to.

I've recently been diagnosed with Basilar type migraines. It took over 7 months to get diagnosed, and several medications through trial and error. With my meds regulated, I'm able to function fairly normally, though do have a flare-up from time to time. In addition to that, I also have digestion issues, so figuring out my diet has been the hardest thing for me since I've been diagnosed.

I feel your pain (both literally and figuratively), and it sucks!