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.