Just been roughing it #migraine #hemiplegicmigraine #migrainesupport #migrainedisorder #migrainelife #hemiplegicmigraines #hemiplegicmigrainessuck #migrainessuck #migrainestrong #migrainewarrior #migraineawareness #migraines #hemiplegicmigraineawareness #spoonielife #spoonie #chronicillness #chronicallyill #quotes #quotesaboutlife #cell #cellphone
Happy Women's Day to the warriors, the innovators, the women in the pursuit of justice, the advocates, the ones who everyone says is "Just too much", the women who create, the women who care, mothers, grandmothers, aunts, sisters, and friends. Today, I raise my McDonald's Cup of Blackberry Brandy to us! β€οΈ #womensday #womenempowerment #womensupportingwomen #womenempoweringwomen #womenpower #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #migraine #migraines #migrainesupport #migrainestrong #migrainedisorder #rare #support #womensupportwomen #womenwholift
I learned a fun fact thanks to @shadesformigraine ! Did you know that TBI, Concussions, and Head Trauma are all triggers of HM? Also, there's an interesting case of Post Traumatic Migraine where after a football injury that lead to a brain injury a student started having Sporadic Hemiplegic Migraine attacks. Very fascinating! π§ ππ #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #migraine #migrainesupport #migrainedisorder #migrainelife #migrainestrong #migrainetriggers #migrainewarrior #chronicallyill #chronicillness #chronicillnessawareness #headache #headaches #headachessuck #spoonielife #spoonie #spooniesupport #neckpain #numb #wematter
Who else struggles/struggled with the idea that once you were diagnosed you'd go back to normal again? ππΌββοΈ me too. It's totally normal to grieve who you once were and what you were able to do. Therapy is HUGE through these moments. There are Therapist who work with/have experience working with people with Chronic Illnesses. There is love and support to get you through this πππ« My favorite Support Group for HM is @womenshemiplegicmigrainegroup βοΈ #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #mentalhealthmatters #hemiplegicmigraineawareness #mentalhealthawareness #migrainestrong #migraine #migrainesupport #migrainewarrior #migraineawareness #spoonielife #spoonie #chronicillness #chronicloveclub #chronicillnessawareness #chronicallyill #therapy #community #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder #complexmigraines #reality #real #info #themoreyouknow
What are your Hemiplegic Migraine triggers? ππ #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #migrainestrong #migraine #migrainesupport #migrainewarrior #migraines #migraineawareness #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder #chronicloveclub #triggers #migrainetriggers #chronicallyill #chronicillness #chronicallychill #chronicillnessawareness
Your PCP can refer you to either one for evaluation. ππ #migrainestrong #migraine #migraines #migrainesupport #migrainewarrior #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder #chronicloveclub #neurology #neurologist #headachespecialist #headache #spoonielife #spoonie #outofspoons #migrainelife #chronicallyill #chronicallychill #chronicillness #chronicillnessawareness
Wow, it's already been 1 full week of Rare Disease/Disorder Month! ππ»ππ We still have 3 more weeks and alotta more information to learn and share together! π« Thanks for the awesome information @nord_rare! #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #migrainestrong #migraine #migrainesupport #migraine #migraines #migrainewarrior #migrainedisorder #migrainelife #migraineawareness #chronicallyill #chronicillness #spoonielife #spoonie #chronicloveclub #headaches #ivefallenandicantgetup #numbness #chronicallychill #chronicillness #chronicillnessawareness #strokemimics #stroke #complexmigraines #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder #rarediseasemonth
Once you have Hemiplegic Migraines you hear alot of words that make you go π€ Ataxia is one of those words. The simple definition is without coordination. Ataxia is used in many other diseases and disorders. #migrainestrong #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #ataxia #migraine #migrainesupport #migraines #migraineawareness #migrainedisorder #migrainelife #spoonielife #spoonie #chronicloveclub #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder #spooniesupport #chronicallyill #chronicillness #chronicillnessawareness #migrainewarrior
Hemiplegic Migraines are described a as rare form of migraine accomplied with motor aura that some people confuse with a Stroke. Many HM Sufferers are misdiagnosed with Strokes, TIAs, and even Multiple Sclerosis. #migraine #migraines #migraineawareness #migrainestrong #migrainesupport #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #strokemimics #stroke #migrainedisorder #headache #headaches #chronicallyill #chronicillness #ill #invisibleillnessclub #invisibleillness #chronicloveclub #invisibleillnessawareness #invisibledisability #invisibledisease #raredisease #rarediseasemonth2024 #rarediseaseawareness #raredisorder
Hemiplegic Migraines are not just a one size fits all disorder. There's 5 Types: Familial Hemiplegic Migraine 1, Familial Hemiplegic Migraine 2, Familial Hemiplegic Migraine 3, Familial Hemiplegic Migraine 4, and Sporadic Hemiplegic Migraine. Excellent Group for Women with HM β¬οΈ @womenshemiplegicmigrainegroup Other IG Sources on Migraine Disorder: @neurahealth @migrainedisorders @migraineworldsummit @amfmigraine #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #migraine #migraineawareness #migraines #migrainelife #brain #neurology #headache #headaches #raredisease #rarediseasemonth2024 #rarediseaseawareness #chronicallyill #spoonie #spooniesupport #rarediseaseawareness #invisibleillness #invisibleillnessawareness #invisibleillnessclub #chronicloveclub #migrainestrong #migrainessuck
Welcome to Day 2 of Rare Disease/Disorder Month! Today I made this image just giving a basic overview of the symptoms Hemiplegic Migraine Sufferers experience. I'd like to make a more indepth image for this month. HM is very illy named. Migraine is just a symptom. Excellent Group for Women with HM ππ β¬οΈ @womenshemiplegicmigrainegroup Other IG Sources for HM and Migraine: @amfmigraine @migrainedisorders @migraineworldsummit @neurahealth #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #raredisease #raredisorder #rarediseasemonth2024 #rarediseasemonth #rarediseaseawareness #mybrainisbroken #spoonielife #spoonie #migraine #migraineawareness #migraines #pain #spoonie #chronicallyill #chronicillness #ill #info #sick #disabilityawareness #awareness #migrainestrong
Welcome to February 1st which kick starts Rare Disease/Disorder Month! I've officially been added to the Clan this year with my diagnosis of Hemiplegic Migraines. I look forward to sharing factual information this month. It took 6Β½ years, 3 hospitals, multiple specialist, and I can't even count how many test to get to this point of knowing. That is why awareness projects like this are so important. The people who say you're being obsessive over being sick have never been sick like us. When your body is failing you with no end in sight it's hard to not become obsessive. February I'm here to find my voice again and never let a single person ever take it from me again. ππ Excellent Group for Women with Hemiplegic Migraines β¬οΈ @womenshemiplegicmigrainegroup Other IG Sources for HM and Migraines: @amfmigraine @migrainedisorders @migraineworldsummit @neurahealth @chronicloveclub is asking for fellow Zebras to tag them π #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigraineawareness #migraine #migraineawareness #migrainedisorder #migraines #migrainelife #raredisease #rarediseasemonth #rarediseasemonth2024 #spoonie #spoonielife #spooniesupport #chronicallyill #chronicillness #chronicillnessawareness #strokemimics #ill #findyourvoice #migrainestrong
My dog is my watcher, my protector, and my safety net. Whitney can alert me of an attack before I even have my first symptom. When she senses it she won't leave my side no matter where I go, lay, sit, etc. She'll whine if she's not near me. I never taught Whit to any of this. She's done this all on her own. Another reason why I love Rescue Dogs β€οΈ I've been throwing around making Whit a full fledged Service Dog for some time now. Being able to take her with me places would definitely lead to me having better outcomes when I'm out. Anyone else turn their dog into a service dog? If so, who'd you go through? I'm very intrigued and would love any information anyone has. #hemiplegicmigraine #hemiplegicmigraines #migraine #migrainedisorder #servicedog #servicedogtraining #chronicallyill #chronicillness #mybrainisbroken #hemiplegicmigrainessuck #lovemydog #womansbestfriend #besties #mydoganditalkshitaboutyou #doglover #adoptdontshop #pitbull #pitbullsofinstagram
Migraines and TMJ π§ Do you experience TMJ and Migraines ? . . . . #migrainestrong #migrainessuck #vestibularmigraine #hemiplegicmigrainewarrior #hemiplegicmigrainessuck #hemiplegicmigraineawareness #tmjdisorder #tmjtreatment #neurological #neuroplasticity #migrainewarrior #migrainelife #migraineawareness #migrainesymptoms #migrainetreatment #migraineur #migrainecommunity #migrainebuddy #migrainereliefplease
Not my normal kind of post, but, not many people have heard of the condition I have. Hemiplegic migraines. People hear migraine and think headache or severe headache. Hemiplegic migraines are not a typical migraine. It is a rare condition, it will typically cause weakness down one side of the body, which mimic stroke symptoms, vision disturbances, communication difficulties, lack of vision in some cases, pins and needles or numbness, light sensitivity, headache, vomiting, and nausea. However headaches are not alway present during an attack. In my case I get a sharp shooting pain in my head and moments later it passes and Iβm left with one sided weakness, vision disturbances, slurred speech, a brain fog that makes word formation difficult, for example, Iβll forget a simple word such as fork and have to describe the best I can what I want to say by saying food stabby. And the headache will slowly come back as a dull ache that feels like a hangover from hell. Before the attack I normally have a headache I canβt shift for a few days. During an attack I need help. I need rest. I have to sleep a lot. Many things can trigger a migraine, such as caffeine, chocolate, cheese, lack of sleep, bright lights and even odours! Lack of sleep is a major trigger for me. Cadburyβs chocolate is a massive no no for me (thankfully I can have any other chocolate!) and sometimes they just happen. When someone says they have migraines, please, donβt just dismiss them and think βoh itβs just a headacheβ, theyβre not. They can be debilitating. During an attack I cannot even hold even a cup of water without spilling it. Migraines suck. . . . . . . . . #migraine #migraineawareness #migrainewarrior #migrainelife #migraines #migrainesufferer #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigrainesufferer #hemiplegicmigraine #hemiplegicmigraineawareness #notjustaheadache #hincher #warrior #chronicillness #chronicmigraines #chronicmigraineawareness #chronichemiplegicmigraines #chronicmigrainessufferer #β²ππΞ»ααΏβ²α₯α΅απ’
After 4 days of hemiplegic migraines hitting me hard I'm hoping that today I'm staying migraine free. The air is not feeling as heavy and this light rain is just lovely. Dress - Ellen @popsyclothing Footless tights - Rose @popsyclothing Shoes - @rocketdogeurope #hemiplegicmigraines #hemiplegicmigrainewarrior #hemiplegicmigraineawareness #hemiplegicmigrainesufferer #hemiplegicmigrainelife #hemiplegicmigrainessuck #mymigrainelife #rain #lightrain #popsy #popsyclothing #popsypretty #popsydress #popsyellen #itsgotpockets #dresseswithpockets #popsyfootlesstights #rosefootlesstights #rocketdogs #rocketdogjazzin
When a hemiplegic migraine hits the best thing for it is to sleep it off if I can. 3 hours solid sleep in a dark room between pictures 1 and 2. I still have a headache and pains in the left side of my head but at least I no longer look as if I'm having a stroke. #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainesufferer #hemiplegicmigrainewarrior #hemiplegicmigrainessuck #hemiplegicmigraines #hemiplegicmigrainelife #migraineawareness
February 28th is also Rare Disease Day! #chiariwarrior #lupusawareness #hemiplegicmigrainessuck #fightlikeagirl #themoreyouknowπ
When a migraine hits ππ #hemiplegicmigraine #hemiplegicmigrainesufferer #hemiplegicmigraineawareness #hemiplegicmigrainewarrior #hemiplegicmigrainessuck #cfs #chronicfatiguesyndrome #cfsawareness #cfsme #cfswarrior #meawareness
Jumpsuits are fab for hospital appointments. It looks as if I have a combination of migraine, vertigo and dehydration. #hemiplegicmigraine #hemiplegicmigrainesufferer #hemiplegicmigraineawareness #hemiplegicmigrainewarrior #hemiplegicmigrainessuck #vertigo #vertigosucks #dehydration #dizziness #dizzinesssucks #popsyclothing #popsypretty #popsy #popsyaddict #popsychristina #popsyjumpsuit #itsgotpockets #confidenceonejumpsuitatatime #floweryjumpsuit #heavenlyfeetboots #purpleboots
Q was for Quills for the #popsydresschallenge #popsyatoz #popsyalphabet It was a bad migraine day so no photos. #popsyclothing #popsypretty #popsyaddict #popsydress #popsy #popsyhadley #itsgotpockets #confidenceonedressatatime #hedgehogdress #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainesufferer #hemiplegicmigrainewarrior #
Hemiplegic migraine strike again, not jut once but twice today π #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainesufferer #hemiplegicmigrainewarrior
Hemiplegic migraines suck. They appear out of nowhere and hit like a sledgehammer. They also scare your friends when they witness one for the first time π #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainesufferer #hemiplegicmigrainewarrior #migraineawareness #migraine #healthscare #justkeepploddingon #itsoktonotbeok #keepsmiling
**RESTOCKED!** Just added 100 blank cards to our inventory!! You can order blank or customized π Allow up to 2 weeks for customization. I live with chronic Hemiplegic Migraine and other medical conditions, I make these cards once per week in batches between attacks. Your support means so much to me π *See listing for additional photos of front and back https://achysmile.shop/products/hemiplegic-migraine-medical-alert-card (see main link in bio) I make these cards once a week between attacks for my amazing customers. Once weβre settled into our new place I will be adding cards for additional migraine types and expanding into additional medical conditions. Iβd love any suggestions! They are made of credit card plastic quality and the print is bright and easily legible. If for nothing else, it helps me mentally when Iβm alone. This alert card gives me peace of mind that should I have an attack and I have little to no ability to communicate, this card will do it for me. π #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigrainesufferer #hemiplegicmigraineproblems #hemiplegicmigrainecard #achysmile #achysmileshop #achysmilestrong #chronichemiplegicmigraine
I didn't think I'd be using a walking stick quite so often at the grand old age of 33! But here comes the "wooden" leg feeling - i can tell that the bottom half of my leg is numb, and i can tell there is something there when I walk, but it does not feel like a leg at all! It just feels... wooden! I'm now waiting for the feeling so slowly leave my foot too π #hemiplegicmigraine #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #MoreThanAHeadache #NotJustAHeadache #NeurologicalCondition #NeurologicalDisorder #NeurologicalDisease #myjourney #MyLife #thisisme #thisismylife
You don't have to understand this, but that doesn't make it any less real. I don't even understand most of it, neither to medical professionals, so I don't expect you to understand it. But I do expect you to take it seriously. Hemiplegic Migraine is a very disabling condition, and, at the moment, it is taking up very large chunks of my time! If you don't understand something, please just ask. If I don't know the answer, I will try to find it. Just please don't dismiss me/my condition just because you haven't experienced it yourself. I wouldn't wish this on anyone. #hemiplegicmigraine #hemiplegicmigrainewarrior #hemiplegicmigraineawareness #hemiplegicmigrainessuck #dontbeadick #thisismylife #thisismyreality
I have spent the day in bed, in my new lime green "friends" oversized nightshirt, with a numb (and twisted) left leg. I thought it was just numb skin, like usual, but when i went to the toilet (luckily i have an ensuite a few steps from my bed), i could tell it's actually my entire leg that is numb. This is new for me, having the numbness go deeper than just the top later of skin, and felt very strange! I would usually avoid using the stairs when the skin in numb, but if i really wanted to go downstairs i would just about be able to do that (it would take me a while, and would hurt like hell, but i could just about do it at a push). But there is no way on earth i will be even attempting to get down the stairs this evening! Door bell rings? Come again another time. I need food? I will wait until my partner or daughter can get me something. House catches fire? Send the firemen/women up to get me! I am NOT going down these stairs with my leg like this - apart from the higher chances of me falling, it also means I'd have to try and get back up with a numb leg later on tonight! AND i have 2 flights of stairs between the kitchen and living room, and my room! #numbleg #cantfeelmyleg #imstayinginbed #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #MoreThanAHeadache #NotJustAHeadache #NeurologicalCondition #NeurologicalDisorder #NeurologicalDisease #myjourney #MyLife #thisisme #thisismylife
Tonight, I did the longest car journey I've done so far! 40mins! It was only to our "local" big shopping mall, but it's the furthest I've been in a car for months! My body didn't seem to like it much though, as it set off an attack instantly (i had been expecting one as my face had been numb since yesterday morning). As soon as I got out the car, my leg instantly turned inwards and made walking very difficult! I think i made about 6 steps before it started hurting. Luckily, we had recently been gifted a wheelchair and it was in the boot of the car. I knew there was no way I was going to be able to walk around the shops, so we got the chair out. It felt very strange being in a wheelchair! I lost all control of where i was going, relying completely on my partner and my daughter to push me. But it meant I was able to get around the shop with my daughter without having to stop or asking her to slow down. I was actually able to enjoy shopping with my daughter (although I'm not sure my partner enjoyed being in the underwear section talking about different styles of pants with my almost 13yr old haha). My very wonky face did scare a few small children (i guess more kids can see my face when I'm at their eye level), but one very cheery little girl in a disability buggy kept smiling at me, which felt nice. We only went in the 2 shops we needed, before grabbing something quick to eat and watching the rain on the glass walls, then doing the 40min car journey home. These photos were taken as soon as i sat on the sofa. I had to get my partner to take my left shoe off for me π But... I managed 2x 40min car journeys AND did my first trip in a wheelchair! I probably wont rush to do such a long car journey again soon, but i now won't be so quick to dismiss using the chair. #wheelchair #bluewater #bluewatershoppingcentre #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #MoreThanAHeadache #NotJustAHeadache #NeurologicalCondition #NeurologicalDisorder #NeurologicalDisease #myjourney #MyLife #thisisme #thisismylife
It really takes a toll on your mental health, especially when you are perfectly fine one minute but then totally not fine the next #MHAM #hemiplegicmigraine #MHAM2021 #migraine #CMAware #MoreThanAHeadache #NotJustAHeadache #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #MoreThanAHeadache #mentalhealth #mentalhealthawareness #mentalhealthmatters
Do you remember Nanna, the dog from #PeterPan that looked after everyone? Well, this is my "Nanna" - Noah, the soppy cat that squishes himself up so close to you when you are feeling poorly, that you can't even turn your head without him worrying β€οΈ #catsofinstagram #MHAM #MHAM2021 #migraineawareness #invisibleillness #invisiblenotimaginary #NotJustAHeadache #MoreThanAHeadache #NeurologicalCondition #NeurologicalDisorder #myjourney #Migraine #CMAware #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
I really wish i could control this, that there was something i could do to stop this from happening. But i can't. I just have to see it through, however long it may take. #cantcontrolthis #cantcontrolit #thissucks #MHAM #MHAM2021 #migraineawareness #invisibleillness #invisiblenotimaginary #NotJustAHeadache #MoreThanAHeadache #NeurologicalCondition #NeurologicalDisorder #myjourney #Migraine #CMAware #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
Gotta love when a TV advert makes your entire leg twist inwards, your face feel like it's hanging off, and your throat feel like someone is leaning on it! #hemiplegicmigrainessuck #hemiplegicmigraine #MHAM2021 #migraine #CMAware #MoreThanAHeadache #MHAM #NotJustAHeadache #MoreThanAHeadache #NeurologicalCondition #NeurologicalDisorder #myjourney
Day 1 of 95 days done β The first 100 squats of 9500 β I hope to get through all 95 days, but that will entirely depend on how my attacks go. I really hope this helps get rid of some of the steroid weight π€ but it's also giving me something to focus on other than wonky faces, numb faces, heavy leg, and twisted feet. Still time to sign up if u wanna join in (it's FREE) - just check the link in my post yesterday @ginaaliotti #GFitSquats #SummerSquatChallenge #MHAM #MHAM2021 #migraineawareness #invisibleillness #invisiblenotimaginary #NotJustAHeadache #MoreThanAHeadache #NeurologicalCondition #NeurologicalDisorder #myjourney #Migraine #CMAware #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
This is definitely how I'm feeling today! #MigraineHangover #MHAM #MHAM2021 #migraineawareness #invisibleillness #invisiblenotimaginary #NotJustAHeadache #MoreThanAHeadache #NeurologicalCondition #NeurologicalDisorder #myjourney #Migraine #CMAware #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck
I currently can't put any weight on my left foot as i can't feel it (and it's not straight). I had to go up the 2 flights of stairs, and the hallway that joins the 2 sets of stairs, on my bum! And my boyfriend had to pull me up so i could get up off the floor. My arthritis shoulder (right) is now killing me too! Thank god my left arm didn't fall victim to this HM attack, as i wouldn't have been able to bum shuffle around. After finally getting into bed and taking my fluffy socks off, this is how my foot/ankle is π #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #MHAM2021 #migraine #Migraine
My foot WAS straightening out! Until about 45mins ago, when i got a sudden, very sharp pain in the front of my ankle! It actually brought me to tears! And now my foot is back where it started on Wednesday π It's my foot is painful, my ankle is painful, the top of my foot is numb but full of pressure, and the front of my lower leg hurts too. I even gave in an took some Naproxen! I've been pretty good at gritting my teeth through the pain recently (I really don't want to take any medication if i can deal without it, as I'm on a lot of medication anyway), but this was far too painful. I'm now sat on the sofa with a microwave wheat bag on my foot/ankle, wondering how I'm going to get up the 2 flights of stairs to bed (Pic1 - weds afternoon. Pic2 - yesterday lunchtime. Pic3 - last nite. Pic4 - about 45mins ago) #hemiplegicmigraine #hemiplegicgait #hemiplegicmigrainessuck #MHAM #MHAM2021
Woke up at 10.30am feel drowsy (from the medication increase) and still in my HM attack! So spending the day in bed! #outoforder #hemiplegicmigrainessuck #hemiplegicmigraine #MHAM2021 #migraine #CMAware #Migraine #MoreThanAHeadache #NotJustAHeadache #MHAM
I had a review with my GP today. He's happy this medication has had some sort of effect, but not happy that it hasn't done much. So, starting tonight, he's doubled my dose to 20mg a night. He also explained the maximum dose he would put me on, and where we what we would try next, if we can't find a dose to eliminate most of my attacks. Next review in 3-4weeks π #MHAM #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #MHAM2021
This is a "slight" contrast to how i spent my morning! I know it's still warm outside, but I'm slowly getting colder and colder during this attack. I even have fluffy socks on too! #MHAM #hemiplegicmigraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck
So, after a good few days, and a good catch up with a friend in my garden this morning, i am now having a Hemiplegic Migraine attack. I think the constant, low-level humming of a lawnmower somewhere near me, caused this attack, as the inside of my cheek went numb just before my friend left around 2pm. By 2.30pm my face had started drooping, but i needed to go get the 5yr old from school (pic 1) My leg was getting heavier and heavier the more i walked, and by the time i got to the school my had definitely dropped more (a little girl looked at me and looked worried, bless her). The walk back home felt sooo long! I actually gave in half way home and used my walking stick for the first time as my foot had turned inwards π and I still managed to trip over small stones as i couldn't lift the front/side of my foot enough. But i had words of encouragement from the 5yr old on the way home - "good job mummy, you've got this" was his reaction to me with my walking stick β€οΈ. Pics 2 and 3 were from when i got home. I was out the house half an hour! I'm know resting on the sofa, trying to ignore the pain in my leg #hemiplegicmigraine #MHAM2021 #migraineawareness #invisibleillness #MHAM #hemiplegicmigrainessuck
Migraine is more than just head pain. I rarely get head pain, but i do get: *facial and neck numbness *facial dropping/paralysis *scalp numbness or tingles *dystonia and twitching in my nose and neck *numb skin on my entire left side of my body *left leg gets so heavy i can't lift it *left leg turns inwards from the knee down *sharp stabbing pains in left leg and side of body *extreme sensitivity to sounds and noises *unable to drink without a straw *slurrying my words *forgetting words/can't get words out *sudden extreme fatigue And so much more!!! Headpain is a symptom, migraine is a whole separate neurological condition #invisibleillness #MHAM #CMAware #Migraine #MoreThanAHeadache #NotJustAHeadache #MHAM2021 #migraine #headache #migraineandheadacheawareness #migraineawareness #invisiblenotimaginary #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #NeurologicalCondition #NotJustAHeadache
Do you suffer with any type of Migraine? Do you wish people understood it better? I have to admit, until a few months ago, I thought migraine was a really bad headache! I didn't know it is actually a #NeurologicalCondition or how many types there were or just how disabling they are! #MHAM #hemiplegicmigraine #hemiplegicmigraineawareness #MHAM2021 #migraine #headache #migraineandheadacheawareness #migraineawareness #invisibleillness #invisiblenotimaginary #hemiplegicmigraines #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
Earlier this evening I was becoming very short of breath just from walking up and down the stairs - I literally felt like I had run round the block! And then I suddenly lost all my energy - arms went all "floopy" and it was a LOT of effort to keep holding my head up! It made eating dinner extremely difficult (especially with the kids sat at the table with me) as all I kept thinking was "don't face plant the gravy". I hardly ate any of my dinner as I just didn't have the energy or the strength! Apparently my boyfriend was thinking "oh crap, I'm actually going to need to call an ambulance"! Luckily this all seems to be passing after spending an hour and a half laying in bed, but I still feel very drained. #NotJustAHeadachen #hemiplegicmigraine #hemiplegicmigrainessuck #floopy
I got up this morning feeling "meh" after being half awake since 3.30am for some reason. I could also feel tension in my jaw and neck, which is how a lot of my attacks start. So I decided today would be a slow-paced day, and i climbed back under my rainbow parrot duvet. Since then i have heard roadworks (which set off an electric type pain in my jaw and back teeth) and next door doing something (not sure what) in the empty and echoey house. I still haven't yet had an actual attack start, but i can feel one coming, slowly. The numbness is creeping across my face (currently my entire cheek, left side of my lips, and left side of my nose). No idea how long until the drooping and weakness sets in, or if it will just be my face or my leg too (or maybe even my arm again). The medication is definitely helping to build up my tolerance at the start of attacks, but im not sure I like waiting aroud in limbo for an attack i feel is coming to actually arrive. Although I definitely don't like not getting any warning before an attack at all, so i suppose this limbo is better than that?!? But either way, this sucks! #hemiplegicmigrainessuck #invisibleillness #hemiplegicmigraine #hemiplegicmigraines #pjsallday #pjday #duvetday
Stolen from @chronicallymeh but perfectly fits how I feel most days! #outoforder #hemiplegicmigrainessuck #hemiplegicmigraine
I'm fed up! Fed up of trying to avoid my triggers. I don't know what I'm supposed to do! If i stay in, i have to avoid..... Washing machine, hoover, dishwasher, cooker hood, next door doing DIY, feet scuffling on the carpet, and loads more. But if i go out, i have to avoid..... Being in a moving vehicle, cold air, wind/breeze, grasshoppers, walking too far from home (in case i can't walk back), and whatever it was my brain decided it didn't like during my last multi-day attack (still no idea what it was) So i have spent today trapped in my bedroom - furthest room away from the triggers in my home, and away from the room next door seem to be doing most of the DIY in atm. Yes, my meds may have slightly built up sound tolerance before an attack starts, but i don't know how much of my trigger sounds i can take or how bad an attack will be. So i guess I'll just stay here in my room #hemiplegicmigrainessuck #feelingtrapped #feelingisolated
I can't wait for the day i can have a shower and still be able to move both sides of my face when i get out. I really don't like having an emotionless, droopy look on the left side of my face π #hemiplegicmigrainessuck
1 week update..... I have had 7 doses of this medication now, and can honestly say i am already seeing an improvement! Yes, I may have have a few more new symptoms this past week, but i have also had less attacks! My tolerance for sounds has increased, and i even managed to sit next to a wall that my new neighbours were stripping wallpaper off! I can still feel the electric pains in my jaw, the skin on my face is still going numb and my face still feels heavy as a reaction to my triggers, but my face is less droopy already! Hopefully this is a good sign and I won't end up needing a high dose of medication, and hopefully no more new symptoms! π€ #invisibleillness #invisiblenotimaginary #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #medicationupdate
Migraine is very evil! So evil, that yet again i have new symptoms! Now, i also have arm problems to keep track of - numb hand, numb skin on my arm, heavy arm that i struggle to move. I also need to keep track of shooting pains in my side/under armpit/side of breast area, as i have no idea if that is another new symptom of my HM, or was just a badly-timed cramp of some sort But today was the first time I've experienced my face, my leg and my arm all get affected in an attack. Even after a 2.5hr nap, i still don't feel much better. #HemiplegicMigrainesSuck
I love this hat!!! #HemiplegicMigraine #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #HemiplegicMigrainehat #hemiplegicmigrainewarrior
I'm pretty certain i don't currently have any visual auras, but i 100% have sensory and motor auras! #hemiplegicmigraine #migraineaura #hemiplegicmigraineaura #sensoryaura #motoraura #hemiplegicmigrainessuck
Hair shoved up in a loose messy bun. Head wrap to warm the icy cold forehead. Glasses resting on head wrap to lessen pressure on nose. Fluffy blanket & heating on, trying to warm up. Pressure behind left eye. Numb left side of face. Droopy left cheek. Zero energy, but can't go bed yet as haven't had dinner yet. #HappyHumpDay #HumpDay #NotJustAHeadache #hemiplegicmigrainessuck #hemiplegicmigraine #hemiplegicmigraines
The electricians are back, and next door's hoover is going. So I'm curled up on the sofa under a blanket with a numb and droopy face, achey and spasming neck, pressure in my forehead about my eyebrow, pain in my cheekbone, tingly scalp, and very little energy π #hemiplegicmigrainessuck
Hangover day π #migrainerecovery #MigraineHangover #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #hangoverday
Today seems to ba a day where the slightest sound is sending mini shockwaves through my jaw, ear and cheekbone! Rustling of bags (paper and plastic) the clattering of toys, the sound of toy car wheels, the sound of typing on a keyboard/laptop, the creaking of floorboards, the scuffling of feet/slippers across the carpet. The pressure around the base of my ear is already building up and i am already getting more and more sensitive to these sounds, and it's not even lunch time yet! A lot of people suggest wearing an ear plug in this ear, or ear defenders. But I can't do that, as that would leave me with just my part-deaf ear remaining. I am 40% deaf in the ear that is on the "good"/non-HM side of my body, and there are certain volumes and pitches of sounds that this ear just cannot hear/recognise/pick up at all. So having 1 ear plugged, and 1 ear at just over half "normal" hearing capacity, plus a partner working from home AND 2 children at home on half term = not a good combination! #hearingloss #partdeaf #deaf #hardofhearing #decreasedsoundtolerancrle #dst #hyperacusis #misophonia #phonophonia #migrainetrigger #hemiplegicmigrainetrigger #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #hemiplegicmigraineandsound #hemiplegicmigraineandhyperacusis #hemiplegicmigraineandmisophonia #hemiplegicmigraineandphonophobia #hemiplegicmigraineanddst
"mummy, why is your neck moving?" That would be due to high-pitched whirring noise of next door's hoover! Luckily, this symptom eases off fairly easily once the trigger ends, doesn't have a "recovery phase", and can come and goes in isolstion sometimes (on it's own without other symptoms) #hemiplegicmigraine #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #trigger #migrainetrigger #hemiplegicmigrainetrigger
So apparently i didn't rest enough today! After using the little bit of energy i had to eat my dinner, im now back in bed, this time with a ringing in my ear, a painful cheekbone and a completely numb (but not overly droopy) left side of my face. Here's hoping tomorrow will be a little better! π€ #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
There are soooooo many things that could trigger a #hemiplegicmigraine attack/episode. But over the last 8/9weeks i have had to really listen to my body to learn my own triggers and patterns. These are just SOME of my triggers! Most of which are pretty difficult to avoid! But it seems that most of my triggers are vibrationy type sounds, or quickly-repetitive sounds. My biggest, instant triggers are being in a moving car, and next door's loud, high pitched hoover! Another big trigger for me is also cold winds (windy days, sitting in a draft, fans/air con, etc), and the other day I learnt about a new trigger for me - the sudden change of weather/pressure! #hemiplegicmigrainetriggers #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
I am only at the start of my #HemiplegicMigraine journey/story. Like, only just diagnosed, still learning every day. I spent months being told i was suffering from recurrent #BellsPalsy but the GPS couldn't work out why. So I had an MRI and a referral was made to Neurology. Within 10mins of me explaining my symptoms to the neurologist, he categorically said #NotBellsPalsy (for a few reasons) and that he believed I was actually suffering from Hemiplegic Migraines (HM). He asked that for the following 8 weeks I gave up certain foods & drinks, which was difficult but I did it, and to write a detailed daily diary to see if there were any patterns to my facial drooping and numbness. At the end of this 8 week period, we both agreed that foods/drinks did not seem to be a trigger for me (yay, he said I could eat chocolate again before Easter!), he confirmed my HM diagnosis based on my diary findings, and is now sending me back to be managed by my GP (with some starting suggestions for medication management). And that is where I am at now - awaiting an appt with my GP to put this plan into action! Starting with coming off the steroid medication I was prescribed for the "Bells Palsy" back in December (currently at 18 weeks on this medication and have ballooned out so much!) I am still learning more and more about my migraines every day, and each attack is different with a different hangover/recovery. Everything i have learnt about HM so far has been through a VERY supportive group on FB, but the main things I have learnt is how different all our experiences are, and how easily it can be misdiagnosed as something else! #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #mystory #mystorysofar
What does your #MigraineHangover look like? Today, mine has me back in bed by 2pm struggling to stay awake, feeling so drained, with no interest in food (although i did force myself to eat something earlier). Good news though - my face is looking more "normal" and less droopy, so this resting is definitely helping today! #RecoveryDay #migrainerecovery #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #PJs #pjsallday #hemiplegicmigraines #hemiplegicmigrainewarrior #backinbed #feelingdrained
Today is definitely a "PJs and sofa" kinda day! The housework can wait til another day! #RestDay #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #PJs #pjsallday #pjsandsofa #restingisimportant #invisibleillness #invisiblenotimaginary
10.17am and I'm still in bed. Not sure if I'm recovering from disturbed sleep (thanks to the boyfriend and the cat snoring so I went to sleep on the sofa at 12.30am then got woke by them at 8.30am), or if my body is trying to sleep off this migraine attack that started 2 evenings ago. But either way, my body feels weak, my face feels numb and droopy, and my head feels both heavy and spacey. And I really want a cuppa but am 2 floors away from the kitchen *tries to send telepathic thoughts to the boyfriend working in the home office* #stillsleepy #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine #snoringsucks
Sometimes the words don't even come out that clearly! #MuddledUp #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior #hemiplegicmigraine
This page is for me to document my journey with hemiplegic migraines and my frustrations of living with them #hemiplegicmigraines #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigrainewarrior
Waiting for my CT scan. Nervous as always. #hemiplegicmigrainessuck #hemiplegicmigraine #integriscancercenterokc #MyNoggin #writerslifeforme
The first photo is a few days before I got sick. The second is a picture from today. Silas becomes a Velcro dog when he knows Iβm going to get sick. The days after I get sick he likes to keep a close eye on me. #bestboy #fantasticbeast #germanshepherdservicedog #germanshepherdservicedogofinstagram #gsdservicedogsofinstagram #gsdservicedog #gsdservicedogs #servicedogsofinstagram #hemiplegicmigraine #hemiplegicmigraineservicedog #hemiplegicmigrainessuck #hemiplegicmigrainealertdog #hemiplegicmigrainesarenotbadheadaches #notallheadachesaremigraines #strokelikesymptoms #strokelikeepisodes
Giving myself 30 days to lose 14lbs or 1 stone. This is my goal before Christmas. Fingers crossed its more but gotta aim for something small so I know I can achieve it. #mumlife #weightloss #weightlosstransformation #weightlossjourney #30daychallenge #30days #losethisweight #christmasiscoming #chronicillness #neverapainfreeday #migraine #hemiplegicmigraineawareness #hemiplegicmigrainessuck #hemiplegicmigraineproblems #letsdothis
#hemiplegicmigraine #hemiplegicmigraineawareness #migraineawareness #raremigrainedisorder #hmawareness #welcometomylife #healthproblems #migraines #migrainessuck #paralysis #awareness #hemiplegicmigrainessuck #fml #ihatethis #strokelikesymptoms #invisibleillness #neurologicaldisease #aura #stroke #ihmf
