Fellow migraine sufferers

meaghandyer

Hello out there. I was just wondering if there are a lot of fellow migraine suffers on MFP?
Just for clarification, I mean the real migraine diagnosis (I know sometimes people in the US use the word migraine to mean headache...definitely not the same thing).
I get hemiplegic ones which are extra fun.
I'm just curious if anyone has noticed how changing or restricting their diet has changed their migraines? Mine aren't really food triggered, dehydration is a HUGE trigger for me though and stress. Although no particular food triggers them (except alcohol because of dehydration, so I don't really drink anymore), I do think that not eating regularly or causing big fluctuations of my blood sugar can increase the problems.
Just wanted to hear what happens for others? For how incredibly disruptive to your life they can be, migraines don't really get talked about that much and I find lots of people don't really understand them unless they or a loved one suffers from them. I know they disrupt my partners life almost as much as mine.
Would love to hear others stories!

Efemral

I am 38 and from about 15 to 35 I had 1 or 2 migraines a week. A couple of years ago my doctor prescribed propranolol as a daily preventative. Now it may not work for everyone but it has worked perfectly for me. As long as I remember to take it I am 100pc migraine free! It's like living a whole new life. Maybe ask your doctor about it.

oh_happy_day

Me! And I really hear you - headache does not equal migraine. Migraines are a whole other world of pain.

I've had them since I was 11, I used to get a few a month but as I've gotten older I'm down to about 4 a year. And I'm so grateful because I would be routinely hospitalized with dehydration and needing IV pain meds, it could go on for days and was really debilitating. My migraines have changed through the years as well. Now I get strong auras just beforehand and I gradually lose my vision as the pain kicks in. If it's a bad one my face goes numb and my speech starts to slur. When I was younger they would usually hit at night and I'd wake up in excruciating pain and vomiting.

I take Rizatriptan now which is great, it stops the progression of them 8/10 times. I also take magnesium once a day - partly for muscle recovery and partly because they can prevent migraines. I did get lazy with taking my magnesium recently and I had a migraine, hard to know if was just a fluke. On the food front - caffeine is a big one for me. I try to limit myself to two cups of coffee a day. I haven't noticed any other food triggers. Fatigue, fluorescent lights, sleep deprivation are my major triggers, and I think hormones have played a part at various points in my life. I'm nervous to see what will happen if I ever get pregnant - I've heard that the change in hormones can really make an impact. Mine are finally mostly under control and I'm scared of not being able to take my prescription meds. The pain is so debilitating and such a wretched way to live.

Whitezombiegirl

oh_happy_day wrote: »

On the food front - caffeine is a big one for me. I try to limit myself to two cups of coffee a day. I haven't noticed any other food triggers. Fatigue, fluorescent lights, sleep deprivation are my major triggers, and I think hormones have played a part at various points in my life.

Same triggers for me, plus alcohol. I take migraleve which helps if I take it early enough. For me, it's the nausia that I hate more than the pain.

jyogit

mine are triggered by bright lights and changes in lighting conditions and even some shop lighting etc brings them on.. i wear dark glasses constantly to combat it otherwise i lose vision etc and 3days in bed .. i have to train at dusk so that i can get my runs in without the hassle ..

kirstens1984

Hormones play a huge part for me. And certain foods - the usual caffeine, alcohol and dehydration, and more unusually oranges(!) are a massive trigger. Got prescribed sumatriptan a few years ago which worked for me (but made me feel a bit loopy!) but then I got pregnant and couldn't take them any more - about 6 weeks into my pregnancy I got a very minor migraine attack, but I have had nothing since then (and my little one is now nearly 2) so I can only assume that hormones have played a massive part in this. I'm 30 and had previously been getting migraines for about 5 years every 2-3 months, lasting 3 days every time. I can totally sympathise with anyone plagued my migraines - they are awful!

999tigger

Ive had them for 30+ years. id say since controlling what I eat and staying hydrated has helped me avoid some trigger factors. I have much fewer migraines these days. At my worst i was about 2-3 a week.

Never heard of the hemiplegic ones, just read up on them. How often do you get migraines?

Upir first line and most effective one is prevention by controlling trigger factors.

Is a useful site. http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913

KombuchaCat

Eliminating artificial sweeteners seemed to really help. Also regular acupuncture. I started with going 2x/week for a month or so, then cut down to once or twice a month for about a year. Now I go when I feel like I need to.

chaniluv

My triggers are dehydration, starvation, and lack of sleep. When I'm not on a plan, I don't eat or drink as much and my sleep schedule is fickle. So last time I dieted and exercised my migraines all but vanished! I would only occasionally get them during my menstrual cycle. To be honest, it's partially due to that that I've started back up on MFP. They started coming back full force after I stopped my fitness plan because I was eating and drinking so much less and sleeping odd hours because of my lack of energy.

I just started up again yesterday. That means a caffeine withdrawal headache is probably on its way, but that's much better than a migraine, so I'll gladly deal with it.

oh_happy_day

Oh I forgot another major trigger - tight shoulders and neck. Yoga helps with this but I also get remedial massages every couple of months. (If I ever get rich, that's turning into a weekly event.) Stress related knots in my neck/shoulders, sleep deprivation and increased caffeine are the perfect storm when I'm under the fluorescent lights at work. I've also noticed glare and flashes of the sun can trigger an aura. I have sunglasses stashed in all my handbags, gym bags, the car etc. Overall I think they've improved partly with age, partly with better self-care and partly because I have a routine down as soon as I suspect one is coming.

Does anyone else get a weird feeling the day before a migraine? It's hard to describe but I feel a bit off and strange, spaced out and tired. It often only makes sense once I get an aura!

T1DCarnivoreRunner

I've never seen a dr. about it, but I get migraines. Before you jump all over me and tell me I don't really get them if a dr. hasn't diagnosed it, I'll save you the trouble and tell you I do in fact know the difference between a normal headache and a light-sensitive, sound-sensitive, very painful, occasionally vomiting migraine headache.

For me, the triggers are heat and humidity. I didn't expect it, but they have become less common as I've lost weight. I don't know if that is because my diet is different, or because I'm more hydrated nowadays, or something else.

las07s

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?

Sunnysided1

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

nvmomketo

I had them about a third of the time for many decades. Some would last days - it wore you down. Mine were just auras, pain, and some confusion - I just can't think straight with one.

It turned out they were largely caused by eating gluten as an undiagnosed celiac. Once I went gluten free their frequency really decreased.

They appear to have diminished again since I limited my carbs. I am prediabetic so that could be the link there.

meaghandyer

Hey oh_happy_day yours sound just like mine! The numbness is an extended aura which makes them hemiplegic (they mimic stroke symptoms), which includes numbness down one side, and aphasia (when you can't speak or say the right word).

oh_happy_day wrote: »

Oh I forgot another major trigger - tight shoulders and neck. Yoga helps with this but I also get remedial massages every couple of months. (If I ever get rich, that's turning into a weekly event.) Stress related knots in my neck/shoulders, sleep deprivation and increased caffeine are the perfect storm when I'm under the fluorescent lights at work. I've also noticed glare and flashes of the sun can trigger an aura. I have sunglasses stashed in all my handbags, gym bags, the car etc. Overall I think they've improved partly with age, partly with better self-care and partly because I have a routine down as soon as I suspect one is coming.

Does anyone else get a weird feeling the day before a migraine? It's hard to describe but I feel a bit off and strange, spaced out and tired. It often only makes sense once I get an aura!

meaghandyer

I just have to say a huge thank you to everyone who answered! As I am sure all of you know, it is always so nice to hear that other people suffer through these too. They can be so isolating and jobs, friends, and life don't always understand. I am on 20mg of amitriptyline a night. This has definitely lowered the number I'm having from 1-2 a month to 1 every few months. I really love reading different peoples experiences! I love some of the tips too, we all know migraines are so individual, but its always worth trying other stuff. Thanks again everyone!

KristinaG_is_losing_it

I used to get them ALL the time. I was in a car accident and suffered a concussion that brought them on. Before that I'd never had more than a few headaches ever. I tried every drug known to man, I ended up being allergic to triptans (after a fun ambulance ride and a night in the ER) so then I was restricted to Topamax and Propranolol. The propranolol did nothing but the topamax worked for a long time. I ended up hating it though because of the side effects (hello lack of memory) My neuro kept bugging me to try botox and I resisted at first before giving in, I wish I hadn't waited so long. Now my migraines are non existent for 2.5 months. I start to get a couple when it wears off but even then I don't mind as much because its such a relief from what used to be a daily occurrence.

My triggers are nitrates (I miss turkey pepperoni), dehydration, barometric pressure, lack of/too much sleep, and neck/shoulder pain is my #1 trigger.

Maleficent0241

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.

ffbrown25

Oh man, when I was a kid, I'd get migraines once a week. If I got them at school, they'd have to turn off all the lights and shut all the doors in the nurse's office and leave me there until a parent could pick me up. Of course, when I was a kid, I had a killer sweet tooth. Eventually I realized that artificial sweeteners and certain colors were a trigger for me. Now I only get them once every few months, when I get really overheated or eat something stupid. I have to block off two days and take Advil PM so I can sleep through it.

jenready

I have been struggled with migraines for the past 20 years. I can still remember the very first one I got, while babysitting of course. I have never been able to pinpoint many triggers except for the common ones of dehydration and extreme or prolonged heat. For the past couple of years I have been having less of the actual migraines but more problems with auras. I won't feel the head pain but I will have the visual disturbances, vertigo and nausea. I am currently back on Topamax which seems to be helping. Best of luck to the rest of you, I feel your pain.

bametels

I've had migraines with auras for many years. The frequency and severity has varied over time. Triggers include dehydration, hunger, insufficient sleep, and muscle tightness in my neck. Bright lights (e.g., lots of computer work - bought special glasses which helps) and changing light situations (e.g., walk outside into bright sunlight - sunglasses are a must) are a problem for me. I've never been able to pinpoint food triggers - caffeine seems to help/hurt depending on the quantity and related dehydration that can occur from too much caffeine.

When I was younger, many of my migraines seemed to be related to menstrual cycle hormonal changes. I also had terrible migraines when I had thryoiditis about 15 years ago. When I hit menopause, there was a significant decrease and I wasn't having the auras. But two years ago, BAM, some of the worse migraines ever and I started having some vision loss with them - thought I was having a stroke. Fast forward - I was having lots of other symptoms in addition to the bad migraines and after MANY visits to various specialists, I was just diagnosed with hypothryoidism, which is a result of my thyroid giving out from the damage caused by the thyroiditis. I had been warned that this could happen. I'm learning that many people with thyroid problems also suffer from migraines so getting your thyroid levels checked and having related tests for immune system related thyroid problems (e.g. Hasimoto's thyroiditis) is a good idea.

Bunna99

I am somewhat comforted by the fact that so many of you have mentioned muscle tightness in the neck or shoulders. I did not know that could be a trigger! And two incidences of vertigo. These are new symptoms for me within the past year. I've had migraines and tension headaches for over 20 years.

noclady1995

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!

999tigger

Learn your trigger factors and control them. I cant believe that wont have a significant effect on frequency and severity.

Loads of downloadable information here
http://www.migrainetrust.org/factsheets

MelissaH0910

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?

meaghandyer

Throwing up always makes it feel better for a while and usually can give me the relief to fall asleep. The other weird one that helps me a lot when the headache gets unbearable is getting in the shower. I know its not the most logical place to go with the loud water noise, but the feel of the water pressure on my head helps provide some temporary relief. I can use it to keep my nausea (which is to my linked the head pain) in control until my pain killers can kick in a bit. Also I know its a bit taboo, but you would be amazed how much better suppository paracetamol (or acetaminophen/tylenol) work. The doctor explained to me that when you are that sick, even if you aren't throwing up your gut shuts down to provide blood for more vital organs, which often means that you dont absorb much of any oral medication. I can use WAY less paracetamol in a suppository form and manage through the migraine much better. Plus I have less of a medication haze the day after. I had to stop taking paracetamol when I was a teenager because the high dose I needed was giving me rebound migraines about two days after the first one. Now I can use way less and feel (relatively, it is a migraine after all) better from it.

balboasuze

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...

Here4Ponies

Have had them since grade school, complete with auras, nausea, hyper-reactive to light, scent, and sound. Triggers: hormones, perfume, ASPARTAME (it's the debbil!). Not on medication because they are no longer that frequent and can be controlled with ibuprofen if caught early.

shaumom

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.

meaghandyer

balboasuze wrote: »

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...

Thanks! There were some great tips in there for during the process of weight loss. I also would medicate with chocolate because the sugar rush makes my head feel a bit sharper.

PeachyCarol

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!)