I have #migraines.

I just realized that it might really help other people to read about my lived experience with this condition so - here‘s a thread on my migraines!

What are the symptoms?
What‘s life like with migraines?
What helps?

Also: happy to answer related questions!

I got my first migraine in 4th grade.
I think I was 10 years old.

It all started with a headache that got worse and worse.
Then I got really nauseated.

A family friend brought me home and cared for me until my Mom arrived home from work.

I wasn‘t scared, but it was horrible.

When I told my Mom my symptoms she said „Oh that‘s a migraine. I get them too, so does your Dad. You inherited them from us.“ and that was pretty much it.

She explained that I‘ll get one from time to time, suffer for several hours, then it goes away again and everything‘s fine.

Because both my parents had migraines, and knew there was no treatment (this was early 90s), they didn‘t even take me to a medical professional.

When I got an acute attack they gave me painkillers, a bucket, and took care of me.

Just like that, migraines became part of my life.

For the longest time my #migraines were reliable little fuckers:

First I got a visual aura:

A small twitchy circle of flashing light in front of one eye.

Then I got a tactile aura:

Tingling and numbness in one hand, then the whole arm, then my cheek, mouth, and tongue.

After some minutes, maybe 15-ish (I never timed it) the headache started.

Then the aura disappeared.

Then the nausea started.

Then the vomiting started.

Then 20-minute cycles of vomiting, feeling a bit better, getting worse again, vomiting again...for 8 hours.

Every time.

In my early migraine years I struggled most with the aura of my migraines, as well as the nausea and vomiting.

Now I know being autistic interacted with that.

Having sensory disturbances was really scary and distressing.

I also struggled with breathing during vomiting phases.

Once the acute attack was over, I felt euphoric, alive, strong - just really good.

I didn‘t know it then, but this is actually really common among migraine sufferers!

Once it was over, life was normal again and I just went back to living it.

My migraines never scared me.

In my early migraine years, I didn‘t get many attacks.

A couple a year.

Then came puberty, and as I know now the hormonal changes gave me more frequent migraines.

It would have been good to get medical care now - but I didn‘t.
I didn‘t know there was such a thing, remember?

When I was a young adult, maybe 20 years old, I casually mentioned my migraines to my GP during an appointment for something else.

She said „Which migraine meds do you take?“

And I was like „Such a thing exists?!“

Then she introduced me to the wondrous world of triptans

My GP informed me that I could take one whenever I got an acute attack, max. 1 per day.

I got a pack right away, excited as HECK.
No more migraines?! Sign me up!!!

When my next attack came, I popped a tiny blue pill and...
It. Went. Away.

[Did we just become best friends? GIF]

My mind was seriously blown.

Suddenly I had a WEAPON y‘all.

And they were over the counter!
I could just buy them!

From that day on, I always had a couple of little blue triptan pills in my wallet. Always ready. Much power. Such freedom!

No more „What if I get a migraine?“

Now, after the first amazing results with triptans and the euphoria that came with that, it did turn out that they didn‘t ALWAYS stop an oncoming migraine (that was a sad realization).

But they stopped MOST of them, and minimized others.

Triptans changed my migraine life.

So for the next couple of years of my migraine life I was significantly better, I had some control and power, less migraines, less severe migraines, only sometimes one that put me through the former 8 hour hell.

Until I was about about 25.

Life changed again.

When I was 26-ish I was getting another migraine attack.

I popped a triptan, as I had been doing for years now - but this time it didn‘t go as expected.

I got a weird headache, got really dizzy, heart palpitations, sweat, my entire body hurt, and I felt...like I was dying?

It was scary. Eventually it subsided and I thought to myself...could it have been the meds?

And for the first time ever I read the little paper that comes with every med that lists risks and side effects.

Let me just say: I learned a lot that day.

I learned what triptans do inside of my body.

I learned what the risks and possible side effects are.

And I finally understood why my GP had told me to never take more than one pill a day all those years ago.

It had definitely been the meds.
And I never took a triptan again.

I know now that what happened was likely not dangerous - distressing, painful, scary, yes. But not dangerous.

I didn‘t kow that then.

And I didn’t have access to a medical pofessional to help me figure it out.

So I made the only decison I felt safe with: no more triptans.

So now I was back to having migraines and nothing to fight them with.

Luckily I had my husband.

When I got another migraine, I told my husband (who wasn’t home when the scary episode happened).

He said „I could give you acupuncture...“

And I was like...“Sure.“

So he did.

I layed down, he stuck some needles into me (that was scary yo...) and I didn‘t think it would do anything at all (I might even have mocked his efforts a bit) - but it did.

Instead of the 8 hour ordeal I was awaiting, now without triptans again, I had 4 hours of mild migraine

Now I have to say that for me, an autistic person with some quite severe sensory issues, getting needles stuck in me was very distressing.

I was used to migraines.
I knew how to cope.
I had lived with it for 15+ years.

Acupuncture required learning a whole new level of coping.

So while acupuncture helped shorten and minimize my migraine - it wasn‘t magical like triptans had been.

I wasn‘t able to cope with all the needles and my husband (who is a professional btw) had to adjust the treatment for me. It became less efficient, but it allowed me to cope.

We found a good balance with some needles removed (I couldn‘t tolerate the ones on my feet, especially between my toes).

Needles on top of my skull & between my eyes helped with the headache.

Needles on the side of my wrist & between thumb and index finger helped with nausea.

Since my husband started acupuncture for my migraines I got less frequent attacks, and my attacks reliably shortened to 4 hours instead of the former 8 hours.

Such was my life for several years.

Until major health problems and several new chronic illnesses came into my life.

Fast forward a couple of years.

I got diagnosed with PMS, PCOS, and myoma - all of which make my hormones messy.

I was prescribed high dose magnesium and accidentally found out the magnesium really helps with my migraines - when I didn‘t take it my migraines were much worse.

Nowadays I rarely get migraines outside of PMS and period days. And when I diligently take my magnesium, I can often avoid my monthly period hormone migraine as well.

Can you imagine I went through 15+ years of periods without knowing that hormone changes can cause migraines?!

A couple of years ago I discovered papaya paste when I was diagnosed with my diaphragmatic hernia and GERD.

It really helps with the related reflux and nausea...and just so happens to also really help with my migraine nausea as well!

Another accidental migraine helper!

I started getting accommodations for my autism and sensory processing problems...and who would have guessed? Some of them really help with my migraines!

I now wear polarized sunglasses a lot - no more problems with light hypersensitivity! During acute attacks, and generally.

Several years ago I went to a neurologist for the first time in my life...not originally because of my migraines by the way!

When I told him that I had migraines he did some diagnostic tests, and for the first time ever I was actually professionally diagnosed with the buggers.

My neurologist explained my EEG and MRI results to me, and let me know that I indeed had classic migraines with aura.

I had been „self-diagnosed“ with this neurological condition for 20 something years before I got the professional diagnosis...something I only realized today!

A couple of years on my migraines changed once again - this time more dramatically.

I was on the way somewhere, sitting in the car, when I started getting symptoms. I thought it was a migraine...but then things went different than usual.

It got really scary.

I got the typical headache, I got the typical nausea...but then I got worse.

I lost all vision in my left eye.

I couldn‘t feel nor move my left arm.

I couldn‘t speak.

I couldn‘t understand people‘s words.

The people with me thought I had a stroke.
They took me to the doctor.

I don’t remember much but I was eventually brought home.
My Mom came over. I was a bit shook up.

At some point my vision came back, I could feel and move my arm again, and it was just a migraine.

That‘s the thing with migraines:

They can change.
And they can be scary.

At this point I started doing some more research into migraines.

I still hadn‘t received much education on the matter!
(What‘s up with that, professionals?!)

I found out that people with migraines have a 3x higher risk for stroke. Not nice to find out, but important to know!

I also found out that migraine symptoms, frequency, severity, all of it often change over the course of a person‘s lifetime.

I tried to settle into the fact that my migraines now meant loss of vision, speech, and arm function, and difficulty with auditory processing for a while.

Temporarily losing my vision and speech has been a really tough thing to get used to because it really is distressing...but I am learning to cope with it.

Recently it has gotten a bit better again, my symptoms less severe.

As my body changes with age, so do my migraines.

Quite recently I started getting these sortof half-assed migraines.

I start to get the migraine sensation (migraine sufferers probably know what I mean...when a migraine is coming, even before the aura, you can sense it in your body) - but then no migraine.

Just odd symptoms.

For me, these odd symtoms were dizziness, sortof blurry vision that can‘t focus, and just the „migrain sensation“ in my body.

After some more research I realized: these ARE migraines...just yet another manifestation.

I learned that migraines without pain exist. Wow.

I learned that migraines can have just isolated symptoms...just vision disturbances, just dizziness, just nausea, just headaches, just...etc.

That was quite the revelation and something nobody had ever told me.

(Again...wth professionals?!)

So where am I now?

Currently I rarely get migraines.
If I take my magnesium I can avoid lots of them.
The time around my period is especially tricky.

Polarized sunglasses, papaya paste, magnesium, and pressure points on my skull and hands are my most important coping tools.

Pain killers (paracetamol) are my most important „migraine meds“...I don‘t take special meds anymore. I‘m too scared about side effects - but also don‘t feel I need them anymore most of the time.

If I can find a new neurologist, I may look into that again though.
I‘m interested.

I now know that good self-care can avoid many migraines:

- eat enough carbs
- eat, drink, sleep enough & regularly
- minimize tension in neck, shoulders, back, and jaw (I need massages)
- minimize stress
- manage sensory overload, especially light
- good air, cool temperature

I learned that foods don‘t trigger migraines!

(Many sufferers believe different, I did too before!)

I learned that migraines cause food cravings.

People eat the craved food, then get a migraine and THINK the food triggered it. But the craving was already part of the migraine!

My Mom used to get a craving for grapes every time a migraine (unknowingy) came on for her.

Many times after eating grapes she got a migraine.

So she concluded grapes trigger migraines & stopped eating grapes.

I had the same with dark chocolate.

I‘m so glad I know better now!

I am probably forgetting a lot, but my brain is at its limit.

Migraines suck.

They are still not super well understood, but progress is being made!

They are highly individual and what will helps is too (sadly).

There is a lot of help out there!

You just have to find it

I certainly made some mistakes with my timeline (memory problems y’all) but it doesn’t really matter.

If I can manage, I‘ll write up a properly sorted blog post on migraines at some point.

If you have questions, please ask!

And if you have migraines, feel free to share!