cluster migraines

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    Community Voices
    Community Voices

    Seeing this site for first time, hoping to find help after years of prescript meds; healthy eating. I've had Migraine for 3 days, w/out relief.

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    Community Voices
    Community Voices

    🙂🤪Hapy dayz 😜🙃

    <p>🙂🤪Hapy dayz 😜🙃</p>
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    Community Voices

    It's Saturday #Goodmorning

    <p>It's Saturday <a class="tm-topic-link ugc-topic" title="Goodmorning" href="/topic/goodmorning/" data-id="5bd87e780ebdbf00c008b309" data-name="Goodmorning" aria-label="hashtag Goodmorning">#Goodmorning</a></p>
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    Kat Harrison

    Inside a 24-Hour Migraine Attack

    I have had some version of a migraine and/or cluster headache every day for over 15 years. I’ve been on over 100 medication combinations (both abortive and preventative), have tried various nerve blocks with mixed results, inpatient and infusion programs, acupuncture, elimination diets, supplements, cranial massages, aromatherapy…you name it. But as it turns out, no amount of optimism or creativity will grant me much relief as my particular brand of head pain is caused by my lack of a balance system. Bouncing vision causes constant throbbing. Some days are better than others, and I’ve mostly adapted to this life of constant pain. One of the most common questions I get from non-migraineurs is, “W hat do they feel like?” To answer that question more publicly, and to help bring awareness to just how debilitating and unnerving they can be in honor of June being Migraine and Headache Awareness Month, I kept a journal of an especially intense attack that I recently had. Here’s an excerpt. Buckle up – it’s going to be a very self-deprecating ride. 4:23 a.m.: I am woken up by what feels an icepick behind my right eye. The pain is so intense, that it travels down the back of my neck and I swear I can feel it in my hips. Can love handles have migraines? But I’m only half awake, so I curl up next to my sweetly sleeping pup because cuddles are a cure…right? 4:57 a.m.: Despite my best efforts, I’ve been tossing and turning for well over a half-hour now. Aside from getting a cramp in my lower back from curling up in the fetal position (my dog made it look so easy), there are no new developments. Perhaps, I think, if I could just remove my entire right eye…this would go away? Would I miss it? Not sure. But it sounds messy and I just washed the sheets. So slow your roll, Harrison. 5:01 a.m.: During a migraine attack, my capacity for patience is non-existent, so I roll out of bed and hobble to the fridge. The smell of yesterday’s pad thai makes me want to run far, far away – but I reach for my secret weapon: an eye mask tucked behind the eggs. Trust me on this one. 5:07 a.m.: The mask is already losing its potency but it still feels so damn good and I’m tired and trying to trick myself into sleeping. Sleep and you can have cereal! Sleep and you’ll wake up pain-free! (Yeah. OK. Because that is how this works.) 7:45 a.m.: I must have managed to fall asleep, as there is now light streaming through the blinds. The sun hurts like the dickens and I am wishing I was a vampire right now. The pain behind my right eye has multiplied to the left ( Why? How?), and I’m having a tough time opening my mouth. This happens sometimes. 7:53 am: My dog is now stirring, which means he’ll need to go outside soon. The thought of putting my feet to the ground and assuming a vertical position makes me sick to my stomach. “ You do can it,” I whisper to my toes. He needs you. 8:01 a.m.: We’re outside now and I feel like the sun might be trying to swallow me whole. When did it get so bright? What have I been doing with my life not to notice? Why do we need sunshine in our lives? 8:32 a.m.: By now, I managed to feed my dog his breakfast and I’m now back to being horizontal – this time on the bathroom floor because the coolness of the floor tiles feel like a million bucks. Not in a just-got-rich sort of way, but as if I am laying on actual money. I feel like I might throw up, but the effort that would take is unthinkable at this moment, so I continue laying here. My phone buzzes but I can’t look at it. 9:07 a.m.: It feels like hours have passed. But alas, no. All I can do is close my eyes, think about dark places like caves and movie theaters and makeshift pillow forts. Take me to your leader, I think. 10 a.m.: I’ve cried approximately 4.7 times in the past hour and have evaluated the following: 1. Do we actually need brains? 2. Could I temporarily house my brain in a migraine-free zone and put it back in me when the pain has subsided? 3. Do I feel like eating? Absolutely not, do not be silly. 10:42 a.m.: I am already in the bathroom, so I force myself to be upright and turn on the shower. Typically, I don’t bother with the effort of bathing during a migraine attack, but for some reason, torturing myself with cold water sounds like a good idea. 10:44 a.m.: This was a terrible idea, Kat. I hop out, proceed to puke, and army crawl into bed. 1:02 p.m.: By now, the pain has left my eyes but has trickily transformed into a whirling dervish in the back of my head. I start crying again. Sometimes, I hate that this is my life. That I lose entire days and even weeks to pain that I cannot prevent or stop or make better. 1:56 p.m.: The crying has stopped, mostly because it makes the pain much worse. My stomach feels a little less like I’m on a cruise-ship-stranded-at-sea, and I contemplate the thought of drinking water. Again, terrible idea, Kat. 3:15 p.m.: By now, I feel like I have officially lost it. I’ve made a mental grocery list, tried some self-guided meditation, curled into the fetal position again, and slipped in and out of the covers with various body parts exposed. I wrote an acrostic poem about pizza, too. Don’t ask me to recite it, you’ll regret it. 7:52 p.m.: I must have managed to take a nap. As my reward, I force myself to take a sip of water. It stays down. I am invincible! I share this slice of my life with you because If you’ve never experienced a day like this, then I hope you never have to. Migraines are all-consuming, drearily debilitating, and emotionally taxing. They temporarily drain you of your essence. But if you’ve ever had a migraine attack like this one, I wanted you to know that I’m with you. I hear you. I understand. They’re the absolute worst way to spend a day. But you are more than your pain. You are strong and an incredible pillar of a person. You’ll get through this. Tomorrow is waiting, the sun isn’t all bad, and somewhere out there is a person (or two) who’s totally craving to hear your pizza poem. They just don’t know it yet. Getty Image by Rasulovs

    Angela Davis

    What It Feels Like to Have Stiff Person Syndrome

    21 years of my rare, incurable neuromuscular disease, Stiff-person syndrome (SPS), transformed my muscles into the squeezing crush of an anaconda without ceasing. There is never relief. My medicines are failing to work, as my disease is severely progressive. My bones have been crushed into fractures and the entire metatarsal region of my left foot has collapsed. I fight seizures, tremors and muscular vibration on the inside, and it is embarrassingly visible on the outside every single day of my life. I am the wires tied to a harp too tight to play, and with the slightest pressure, begin to burst apart. I feel the fine fibers of muscles all over my body rip, tear, jerk, pop, freeze, burn, seize and flick like rebounding rubber bands throughout each day and night. I feel my muscles actually shrink and stiffen as if they are petrifying cement blocks everywhere. The worst leaden, shrunken places reside in my calf muscles in my legs. My thighs which squeeze and crush my kneecaps, my arm muscles, and the seized muscles throughout my neck and the base of my skull. I hold on as intense vertigo and fainting episodes come and go from the intractable rigidity and acute pain of my musculature. Pressing nausea is a constant companion along with the strain of vomiting when my body just cannot contain it anymore. Cluster migraines from intractable shoulder, neck and skull spasticity also will last for days. I fight to function through the agony. I suffer excruciating pain jabs all over my body that last for days and leave me exhausted, uncertain each time which one may act as my assassin. I fight to survive each attack. Every physical exertion I attempt, from trying to walk, showering, or washing a dish results in even tighter muscular seizing throughout my body. The anaconda crush that forces my body to feel it will spontaneously combust from the merciless squeezing pressure. The muscles around my calves and ankles are so seized, they keep my feet from touching the floor as I sit or stand, forcing me to clutch onto furniture to move myself around our apartment. I fight not to topple over and fall when I try to shuffle across the living room. It makes me sometimes wish my body would explode. I finally have the wheelchair I needed years ago, but I must have someone push me due to my rigidity. Luckily, my devoted husband is happy to help in any and every way possible. The family I was born into abandoned me the moment my disease progressed and I finally received a diagnosis from UCLA. That presents a whole other disbelief for myself and others, though my specialists say that their patients endure this cruelty from friends and family all of the time. It does not make incurable, progressive physical struggling any easier.