#.hemiplegic migraine warrior

[lelibug]

(via In One Very Nutty Shell… It's Just Me.)

DelphineMusic | blog

.a.k.a. LeliBug

• Geek • Goth • Gamer • Coffeeholic • • Techaholic • Unofficial Tech-Support •

• Animal Lover • Singer-Songwriter• • Writer • Blogger • [Former] IT Contractor Data Analyst

• Proudly Autistic • Wheelchair Wheeler  •

#blog #delphinemusic #fibromyalgia #fibro warrior #hemiplegic migraine #Vestibular Migraine #Migraine Variant #von willebrand's disease #late diagnosed autistic #autistic adult #autistic female #autistic women #wheelchair user #gamer #goth girl #tech #personal

[encoreunbloginutile]

Quand j’ai survécu à la montée du Mont Ventoux à pieds pour voir le lever du soleil, à une nuit à la belle étoile, et à un bon gros orage à la redescente

Bon, j’ai fait une petite migraine le jour suivant,... mais chuuuut.

#asthmatique #migraineuse #hemiplegic migraine warrior #badass #challenge #out of my confort zone #woman versus wild #into the wild #it was hard #but cool #proud of myself #self improvement

[asgirl17-blog]

WTF Was that!!

27.7.12 was just like any other day I although I had been experiencing a sore eye for a few days the drs said scleritis? Weird I’d never heard of it. Putting my baby to bed I started to feel dizzy, sick. I laid down not wanting to move, waiting for my husband. He soon came home walked me to bed then BAM - I started to loose then sensation in my face, soon my hand then the whole right side of my body!!

What was happening to me. Panic spread I couldn’t find words, I was confused my arm was heavy- was I having a stroke?

My husband was on the phone to the ambulance- wait they were already here. I couldn’t think straight, I couldn’t stop shaking. They were taking me away- but what if my babies needed me ?

I couldn’t breathe properly they put me on oxygen. I woke up at hospital beeping tubes and bells. What a hell hole. It was a Friday night and they were under staffed they told my husband they thought I was having a stroke but couldn’t do a CT as it was shut for the night. I was given medication. It took them 2 Days to CT me. It was not a stroke thank god - but the hell is wrong with me I’m unable to move.

My best friend came to see me and I knew in her eyes how bad it looked. I’ll never forget, although I know it bothers her that she cried in front of me but I know she loves me and she has been there again and again throughout this whole ordeal and I love that girl and her beautiful family.

I ended up needing a spinal tap the first one left me with a leak of the spinal fluid then they needed a second one as they could get enough fluid from the first, they said to my husband- we are thinking MS WTF!!

All this is happening mind you will I’m drifting in and out of concness and in an enormous amount of pain.

Eventually they come back days later they don’t think it’s MS but all my blood work is crazy I need more scans this time an MRI 2hrs it took and to this day every time I I have one it brings backs these awful days ( worst days of my life)

It has now been about 1.5 weeks I can just move my feet.

The neurologist said he thinks it’s a hemiplegic migraine but it’s out of his field and he’s only ever read about them as they are not that common. Also my blood work shows some strange things happening but he’s not sure so follow up with the gp so when I can walk , talk and eat I can go home- gee what a fabulous dr. 6 days later I’m taken off the pca - all in one day have a terrible reaction. I called my dad to get me the hell out of that place I went home to hold my babies the best reward for fighting through it.

Did I think I was going to make it - no I didn’t.

I can’t thank my mum and husband enough for looking after my babies through out the whole time for me.

1 month later I had an official Diagnosis of Hemiplegic Migraine where one side of your body can go paralysed type migraine it can affect your speech walking fine motor etc. 9 months later after lots of I’m not sure from lots of different test I had an official Diagnosis of Lupus SLE. How did I feel- scared, terrified, relieved!

That day defined the rest of my life and I will forever morn the girl I was before. My story has so much more but that’s for another day………………

#ankylosing spondylitis #lupuswarrior #.hemiplegic migraine warrior

[themigrainemermaid]

#chronicillness #chronicpain #chronic illness #chronic pain #chronic migraine #migraine #migrainelife

[healthstoriesproject]

"My migraine advocacy gives me new hope. My old dream has come to an end but my now I have something new to look forward to.” 

Erica Carrasco (aka @AchySmile) suffers from hemiplegic migraines a rare and serious type of migraine headache that causes excruciating pain. While these migraines prevent her from having a normal 9-5, she's found joy and meaning in migraine advocacy. 

Check out her story on our blog! 

#hemiplegic migraine #chronic migraine #migraines #migraines suck #migraine awareness #migraine warrior #migraine life #migraine sufferer

[lelibug]

Having spent most of this week under extreme distress because of the weather and distinct lack of isobars, yesterday I ended up in extreme meltdowns and severe hemiplegic paralysis. This is, of course, thanks to the terrible weather inducing a horrible migraine… and that migraine travelling down into my extremities instead of up into my head.

Don’t get me wrong – no one in their right (or even wrong) minds want or prefer that horrific and excruciating migraine headache. Ever. However, that does not mean I have to be pleased with the Hemiplegic Migraine that then takes its place.

The problem also is that – despite knowing I have been experiencing hemiplegia instead of “normal” migraines since I was at least 17 – I still readily forget they still have to be treated the same. Not with medication: I mean in how they’re dealt with.

Today, because of this, I ended up blacking out all day. The closest I can describe it is like being seriously generous with Xanax, or Valium, and you are entirely unable to keep your eyes open. You might come round for a few seconds, but then off you go again. Rather like with General Anaesthetic, after the surgery. It took my mother to point out this was exactly my behaviour with “normal” migraines – and given the long-term stress, the extremely low isobars, the fact I’m under wheelchair-inflicted house arrest, it was obvious this was what was happening again. The severe hemiplegia I suffered yesterday was a testament more than anything to that.

It had now made me realise just how seriously I have to treat this – just like I used to treat my migraines when I was young.

I have suffered from them since I was 8 years old. They became more severe from when I was 10. They really hit their stride between about 12 and 15 – and the fact that was the most stressful time of my life (until now) shows testament as to how much stress is a great trigger for them. The Triptans didn’t turn up (well, in north Wales at least) until I was 17, and they were a godsend… but only for “normal” migraines. In Hemiplegic Migraine they can make them worse, or put you at risk of a stroke. So they’re not really that much help.

What has always been some help is mentality…. Kindness and understanding, allowing yourself the time to go through it and recover without expecting anything more than you can give. The next time this happens, I won’t be so scared. I’m a veteran – even Master – migraine-enduring warrior, so I don’t even have to learn anything new. Just go back to what I know.

It saves an awful lot of time and brain-space, I can tell you.

10-11 June 2017 Having spent most of this week under extreme distress because of the weather and distinct lack of isobars, yesterday I ended up in extreme meltdowns and severe hemiplegic paralysis.

#dealing with migraine #FHM #Hemiplegic Migraine #Migraine Variant Syndrome #migraines #permenant hemiplegic migraine