True Story: My severe, life-destroying migraines were mis-diagnosed for 23 years

What's it like to live with awful, chronic migraines? The kind that affect your school work, your friendships, and your career choices? Click through for one woman's story of curing migraines and her surprising migraine treatment.
What’s it like to live with awful, chronic migraines? The kind that affect your school work, your friendships, and your career choices? That’s what Stephanie lived with for 23 years – till her mom mentioned a treatment in passing. This is her story.


Tell us a bit about yourself!
My name is Stephanie and I’m a 23-year-old grad student from lovely South-Eastern Ontario. Most people know me for my work as an artist and illustrator for various publications and events. I’m an obsessive crafter/maker and try to construct just about anything from scratch, just to see if I can.
For those of us who have never had a migraine, how do they feel?  What happens?
Migraines are notoriously difficult to describe as they are quite unique to each sufferer. They are part of a chronic (and often genetic) neurological disorder causing severe reoccurring headaches and nausea. There is no real ‘cure’ and there are many reasons why one may experience a migraine.
I have what is typically described as a classic ‘migraine with or without aura’, which means I usually have visual/physical symptoms that precede the actual migraine attack.Typically, I will wake up feeling exhausted, irritable and generally ‘under the weather’ and thus be aware that a migraine attack is in the near future.
As the day progresses, I will start feeling a pulsating pain behind one of my eyes and my co-ordination and vision become increasingly impaired.  By the end of the day the pain will take over my entire head and neck radiating out from behind one of my eyes.
The pain makes me extremely nauseous and dizzy and I usually end up curled up on the bathroom floor crying, throwing up, pulling at my hair and wondering if I might spontaneously combust. This ‘third stage’ can last for up to three days and I spend most of my time in the bathroom or hiding in a dark and silent room.How old were you when you had your first migraine? 

I believe I’ve had migraines since before I could even communicate with the world, but they were officially recognized when I was around 3 or 4 years old.

How did your migraines affect your life?

Although I managed to make it through university it was understood that I wouldn’t be able to live a ‘normal’ life. I typically experienced 1-5 migraines a month and they lasted for up to three days in which I was completely incapacitated.

However, the misunderstanding  surrounding migraines was the most difficult part of my situation. Most people don’t consider migraines to be a real disability and expect you to just take an Asprin and get over it.

I had a hard time holding down a job and became tired of trying to explain myself to people who assumed I was just unreliable, dramatic or just straight up crazy.

One of my migraine ‘triggers’ includes emotional changes so I couldn’t let myself become upset, excited or stressed.  Having to live like a robot really damaged my social and professional life. Very few people are sympathetic, most are just angry or annoyed that you are taking more time off and missing important events.

What sorts of diagnoses did you receive from doctors?  What treatments did you try?

The underlying cause of my migraine attacks has been diagnosed as everything from anorexia/bulimia and depression to brain cancer and a variety of other diseases.  Most of my life has been spent in a doctors’ offices, in pain or in fear of being diagnosed with something else.

I have tried every conventional migraine medication including prescription pain killers and treatments, lifestyle changes, hormonal birth control and homeopathic remedies.  I have eliminated just about every type of food from my diet for a lengthy period of time and even tried some crazy remedies such as standing on my head for hours to ‘assist blood flow to my brain’.

What finally worked for you?

Several months ago my mom suggested I try taking a magnesium supplement as she had read that it was helping some chronic migraine sufferers.

I had very little confidence in the idea since I was already taking a multi-vitamin but I tried it anyway. Magnesium is natural and definitely not as scary as some prescription pain medications.  In the first month of taking magnesium the pain and frequency of my migraines dramatically decreased. By the third month I barely experienced a mild headache!

True magnesium deficiencies are difficult to diagnose and often overlooked, but new research has been revealing a definite link to chronic migraines. Of course I can’t speak for  everyone, but magnesium really helped me.

How is your life different now?

I feel like for the first time in my life, I actually have a chance to live. I’m going back to school, getting back out into the world and looking
forward to having a real job.  Life used to be a painful curse to me, and I sometimes wished something would take me out of my misery.
Migraines will always be a part of my life, but so far I’ve been migraine free for several months! That is something I can live with. I am so thankful I can’t even describe it.

What advice would you give to others who are suffering from un-diagnosed health issues?

Never stop looking for an answer or relief from your condition, new research and treatments are being discovered every day! Also, don’t always accept the first diagnoses or treatment plan you are given, especially if you are uncomfortable with it or if the side effects are unbearable.

There is no shame in asking for a second, third, fourth or even tenth opinion if you feel something isn’t right. Don’t let anyone downplay how you feel or accept that it is ‘all in your head.’ I guarantee that you are not alone and that someone will understand.

Do any of you have migraines?  Or suffer from an undiagnosable health problem?

P.S. True Story: I’m allergic to pretty much everything

Photo by elizabeth lies on Unsplash

21 Comments

Han

My migraines arrived with puberty. The first I had I kept going hot and cold and felt like I had flu. I curled up on my bed and it was too light in my room (Even with the curtains closed) so I slept in my parents bed as their room had thicker curtains.

The third or fourth one I got came on at school. I was struggling to read the board and my friend who sat next to me was reciting what was written on the board so that I could finish the lesson. I took myself to the school office and said that I had a migraine, I had to go home and I was going to through up in around 30 minutes. Well they couldn't send me home without a teachers permission so I sat in the corridor outside the medical room with a bucket and waited out what I could thankfully my english teacher walked past and gave me a permission slip to go home. My aunt came and collected me and I ended up going to their house which was like 5 minutes from school. I went to sleep in my cousins bed which was really strange. Especially when i charged for the bathroom and nearly threw up in the bath rather than the loo because their bathroom was laid out the other way round from my parents bathroom.

I'm lucky that any migraines I've had since haven't been as bad – I get the nausea but not the vomiting and not as crippling, They are still horrible and my head feels like it's going to explode but like with my Mum's as long as I get aspirin or similar early enough I can carry on my day pretty much normally.

One time I sat in the meeting room at work with the blinds closed and the lights off for the whole of my lunch break and that was enough to clear it.

Reply
Mel

Oh gosh how terrible! I also have migraine with Aura attacks but luckily I've only experienced 3 all together and the last one was years ago. They are unbelievably painful. The first time I had one. My left eye started to get blind before my head even started to ache. It was terrifying. Like I said though, I don't know what caused it, but I had three of them in a short period of time and now they just disappeared.

I have a different health issue though that I'm trying to figure out. I've gained an incredibly amount of weight in the last two years, without changing anything in my diet or lifestyle. I eat extremely healthy and even talked to numerous nutritionists to check on my diet. It can not come from my eating habits. I started to go to the gym and by now I'm obsessed with it. It's gotten to the point were it's a unhealthy habit all together. Really busting myself to loose some weight. I'm not loosing weight though. It's hard to explain, but I'm just gaining weight for no reason and I just can't get rid of it.

When I talk to people they just brush it off and think I just don't want to accept that I'm eating unhealthy etc. They always think I'm talking bullshit. It took me two years to finally get my doctor to listen to me that something wasn't right. And now we are basically on the search as to what it can be. We checked in the most common things (like a thyroid disfuntion) But everything seems to be alright. In a week I have an appointment with a specialist. I can'T wait to hear what he will say!!

It sucks to not be taken seriously on the subject though.

Reply
Stefan, Sarah and Lukka

I can't even imagine life with multiple migraines a month! I've had a number of them over my lifetime but never that frequency. I probably get one once every other month but I remember the first one was insane, and I wanted to pound in my head with something just to make it go away. I also had nausea, vomitting, and dizziness with mine. First couple of (HORRIBLE) ones were actually caused by my birth control, and I got off that as soon as I realized the pattern. The next ones, which I still get, are more mild, and usually come from eating gluten, (I have celiac disease) and I don't know it until I have a migraine.
I'm so glad you have come to a conclusion! What a relief.
Sarah M

Reply
Kimmy Bird

I've never had a migraine, but my mom has suffered from them for years. She had 2 heart surgeries (they thought that the holes in her heart caused them). The surgeries did nothing for her! She, like you, was terribly frustrated and took to finding an answer herself. And magnesium was her solution, as well! So glad that the migraines are slowly becoming part of your past. It has made such a difference in our life to have our mom around without any migraine scares.

Reply
Kate Rowan

Thank you for writing this! I had migranes a lot as a child, and they increased in my teens. As a young adult, they seemed to taper off, but when I got pregnant with my son, I seemed to get them weekly. It was also the first time I got auras as well. I have never tried magnesium, but I will be sure to look into it in the future. Luckily, since my son was born 6 months ago, I havent had one migraine. Fingers crossed it lasts a while!

Reply
BakingSuit

Oh wow. Magnesium huh? It's so funny you say that…

I've had migraines for years and they've been able to identify 3 main causes and a direct trigger. (Three causes are blood sugar issues, stress and hormone changes – luckily they all present slightly differently and over the last 20 years I've learned to recognize which it is.) And strobe lights or flashing lights will almost always trigger them. (Hard to drive in the North East during the winter with the bare trees!)

They've also not been able to identify a fourth type and I'm not wondering if it's Magnesium levels.

I wonder this, because I have undeniable cravings for peanut butter often, which is a "known" craving when magnesium levels are low.

Thank you for sharing, you never know when light will be shed on something!

Reply
Yael

how interesting… i get fairly severe migraines about once a month or so (nausea has never been a problem, but i lose most of my vision in my right eye). my doctor has never much cared to help diagnose the problem – she just handed me a few sample packs of a miracle pill (it's the only thing that will break the migraine).

i'm going to look into magnesium. thanks for sharing your story!

Reply
amy

Had you ever looked into the possibility of treating your migraines with psilocybin or LSD? I know some research has been done that shows cluster headaches are often mostly or completely cured by administering small doses of mushrooms or LSD – not sure if the research applies to migraines as well, but your story reminded me of the articles I've read on it. Not suggesting you need to do psychedelics as a cure (it seems you've found that in the magnesium supplements anyway,) but I figured I'd mention it! It is very interesting.

Thanks for sharing your story! All the best.

Reply
Udoka Omenukor

Heh, this is why I am becoming a nutritionist. The power of diet is often overlooked. When people do not know where else to turn, they should look into their diet. Its powerful.

Reply
Adrienne

For the last 2 years I've suffered from all of the symptoms of migraine except the headache on a daily, 24 hour basis. After seeing dozens of doctors, I finally found a knowledgable one who gave me a name: migraine associated vertigo.

People should know that migraine is more than just a headache — it can be a debilitating condition for some, and it can widely range in how it presents itself. I've found some triggers but am still looking for relief from mine.

Reply
Michelle

My mother and I both suffer from acephalgic (silent) migraines….no headache but we get aura, nausea, photophobia & hemiparesis. Mum used to call them her "little turns" cos they're not the traditional migraine.

Mine start with aura…if I can get to sleep in time then I seem to be able to stave the other nasties off, otherwise I descend into nausea & hemiparesis. The hemiparesis is the scariest bit….the first time it happened I thought I was having a stroke, so I recorded myself talking just so I knew that I was still coherent!

Very interested in the magnesium aspect. Thanks 🙂

Reply
Anonymous

I had migraines for 18 years, almost one per week. About a year ago, my chiropractor suggested I change my diet. I thought I already ate healthy, so I was having a hard time understanding how I could do better.

She suggested I eliminate grains and dairy, and I haven't had a migraine since the day I eliminated them! It's been such a relief, and I no longer live in fear of having them.

Reply
mariavrp

When I was in middle school (around Fifth grade), I suffered from terrible terrible migraines. I had to spend the whole day in bed, not moving, in total darkness. I never got nauseous or vomited from them (emetophobia, ahoy), but it was hell.

Fast forward a few months (I had them once or twice a month), my mom took me to a neurologist and he examined me (EEG included). The doctor determined I had a high risk of epilepsy and prescribed other tests. Clearly, we freaked out.

We were having money problems then, so she decided to take me to an Homeopathy doctor for a second opinion. He prescibed me a very very strict regime (sadly, I don't remember exactly what included), but it involved taking disgusting meds three times a day for a while and cutting out on sugar.

Now, I was a bit skeptical of alternative medicine, and the doctor was quite excentric (an Allen Ginsburg look-alike) but I haven't had a single migraine ever since. Not one. The worst headaches I can get right now are a joke compared to the mildest migraine I used to have.

Re: not being taken seriously, I'm not sure what's in the water in my hometown, but I know several people who suffer from migraines, and I see people being very understanding with them during a crisis. I'm actually sending this article to one of my friends who also suffers from them and hasn't found a cure yet.

Reply
Marie

Wow, I'm so glad you found the answer! I've never experienced a migraine, but even a minor headache or bad cramps seems miserable to me, so I sympathize with everyone who suffers from them.

Reply
Rachael

I used to have migraines – once as a fluke when I was 8 and then again from the ages of roughly 16-20 they were fairly frequent and merciless. I was terrified the first time (as a teen) because I saw a blinking spiral of lights before the pain actually hit. I am so happy you found something that alleviated this pain. I am going to share this post with loved ones who also suffer from migraines.

Reply
Jess

I used to get migraines every month. My doctor suggested I go off my contraceptive pill. My kinesiologist said that my liver was struggling, so at the same time as going off the pill, I did Dr. Sandra Cabot's liver cleansing diet. I can't say whether it was going off the pill or supporting my liver as I did it at the same time, but I don't suffer from migraines anymore.

Reply
Saveria

sometimes i know i'm going to get sick when my vision starts to blur ( the peripheral vision).. and i always thought it was sooo scary… i'm (glad?) to see that i'm not having some weird vision problem and that you experienced it with migraines… may be i'm having migraines???? But i'm so glad you found a way to relieve the TERRIBLE condition (:

Reply
Jenn

I get chronic back and shoulder pain which has so far remained undiagnosed and untreatable and often leaves me unable to sleep and I just get more and more worked up, which makes the pain worse. Just this morning I went to a new doctor, who suggested I take magnesium half an hour before bedtime, as it's a known muscle relaxant. Who knew!?

Reply
Anna Elder

My migraines began with puberty and increased as I got older. I've been told that the cause is a symptom of endomitriosis. I've actually had little luck with dr's taking me seriously. I'm 29 and I've recently been diagnosed with arthritis/lupus and have a lot of strange/rare health issues (chronic compartment syndrome) since being treated for endomitriosis. I get approximately 2-3 migraines per week & my major trigger is scents. I don't get nauseous though which I've always thought was weird and possibly meant that I don't actually get migraines and I'm just a wuss. 😉 not the case though. I'm actually in bed with a migraine right now. I quit my full time job bc of my health problems & now work from home. I know exactly what you're talking about with that…my boss thought I was unreliable.

A friend sent me this link bc I saw an ad about Botox helping chronic migraines and I'm intrigued. I'm also very intrigued by magnesium & will definitely be trying this out first.

Reply
Layla

Wow, that's terrible. I only get them once or twice a month and if I notice the aura early enough I can take (regular strength) advil, cover up the window with a thick towel, and be fine in the morning.

Reply

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.