chronic migraine syndrome

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chronic migraine syndrome
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    There's a crap ton of stuff going on in my life at the moment. My husband has been diagnosed with aggressive bladder cancer and will have his kidney and uriter removed at the end of March, along with the lymph nodes involved if they can reach them, then chemo. He drives long haul trucks and is our source of income, other than my SSDI, and he'll be off for at least 6 wks. To make matters worse, he's been home for a week R/T appointments surrounding this. My health problems alone are enough to make my life a crap fest. Now I'm having even more trouble with pain, insomnia, in ability to eat good food, and to top it off I fell for the first time in a year this morning.🙄 I'm also in need of getting what's left of my teeth out and fitted for dentures (because insurance companies haven't realized that implants last a lot longer there for are less costly in the long term)🙄 I also had to miss my Botox appointment at the beginning of the month and couldn't get in again until the 30th, so I'm having headaches on top of the fibro/arthritis flare I'm in the mitz of. I do get all kinds of kitty purrs and snuggles, especially in the loo🤣 Our smallest cat, Rosie, believes I should never be alone in there. She'll also sleep with me at night, except she's not allowed to when my husband is home. Thanks for listening.🐧#nausea #ChronicMigraineSyndrome #ChronicDepression #ChronicPain #SensoryProcessingDisorder #ChronicTinnitus #PTSD

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    I’m struggling, I need encouragement

    I’ve been losing more friends since my non epileptic seizures started and when I got FND. One of them complained to another friend that I talk too much about my chronic illnesses, doc appts, etc. Why do people not understand this is a major part of my life. I don’t have much of a social life because of my conditions and the little bit I get out is mainly to see doctors now. I feel so unloved and I feel like my seizures was the last straw and people don’t want to deal with a “liability” I feel so lonely. I only have a small handful of friends that still care and take care of me. I’m reaching rock bottom, I don’t know if I can handle another diagnosis. I just wish things were the way they were before all of this. I miss the healthy me. Love y’all keep on going. Keep on fighting. You got this. #FunctionalNeurologicalDisorder #NES #PosturalOrthostaticTachycardiaSyndrome #jackhammer esophagus #gastropathy #Anxiety #Depression #IrritableBowelSyndromeIBS #ChronicMigraineSyndrome #CheerMeOn

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    The mighty community shows up (thank you💗)

    Hi friends- I am feeling really shaky this morning. I feel very detached from the world and scared. But I posted on here last night and I couldn’t sleep. I was going to contact a crisis line but came back here to check on my post.
    This is monumental for me. I have kept everything so close to myself for so long. I have deleted most of my social media accounts and the ones I do have I rarely check. I lost the habit of regularly checking social media which can be healthy, but it can also be isolating when everyone uses it to connect. I have moved my text messages to a different folder where I have to swipe several times just to get to so i wouldn’t reach out to people who were just going to make it worse or not respond. All of my sounds and visual notifications are turned off.
    So I peek at the little heart and it’s green and I’m like “okay… some people maybe responded.” 🫣 and you all showed up. I have been posting more regularly and checking more regularly because this community has seen me. There isn’t anything anyone can do in this moment except be here with me and for me. For some reason it feels like no one in my real life gets it (However, I am the only one who identifies as a disabled person, with multiple treatment resistant chronic conditions #ComplexPosttraumaticStressDisorder #ChronicMigraineSyndrome #Migraine #Agoraphobia among other conditions that I am constantly managing to varying degrees of effectiveness #ADHD #GeneralizedAnxietyDisorder #PanicAttacks )
    So i don’t actually remember what else I wanted to say here- but basically- thank you for being here with me 💗

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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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    I miss fun

    My husband has made it clear to me that asking for joy or fun is asking for too much. I have spent the past 6 years on full disability for severe complex chronic migraines, came off disability 6 months ago as we weren't coping financially, and am currently the primary bread winner. I have been struggling terribly with symptoms, and with the new pressure of work the only thing that I am to doing for recreation is playing boardgames. He refuses to play with me, but will happily spend all day playing online computer games with his friends (I can't join, after working at a pc all day I am spent and cannot physically manage to spend more time at one to play). We recently moved, so I've been begging for help to sort the house out, so I can at least try and invite friends around for myself, as I feel lonely. I asked again today and he blew up at me again. Currently I struggle with doing much beyond working and sleeping. I'm just desperately trying to get something to make the rest worthwhile. #ChronicMigraineSyndrome #ChronicPain

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    Irritated by Loved Ones, Why? #BipolarDisorder #ChronicMigraineSyndrome #Anxiety

    Feels like a psychopath lives inside my head sometimes. I'm fighting these IRRITATIONS that surely "normal" people don't have issues with.

    My husband sometimes chews like a hog or talks with food in his mouth, and I randomly want to hurl obscene hurtful things out loud at him. My son who is 15 & on the spectrum will persevorate at me for just 5 minutes too long (a daily thing), and I'll want to just scream SHUT THE $&^% UP!! Just sometimes.....

    I love these 2 humans, why do I get these random urges for no reason? The migraine? The stress of the workday today? Past my bedtime? Just a part of being bipolar, it happens? I DON'T KNOW, but it's exhausting. I fight it off, keep it to myself of course. But now I'm sitting there with this silent war in my head. I'm distracted now, can't focus on the tv or conversations, like I'm not present really. Is this a little what it's like to have voices? (Not to minimize those who really struggle with that, sorry) Meds are good, I just have these mini-silent-episodes. Anyone else have this kind of thing??



    I have a lot of exciting stuff happening but it is also very scary. I am getting married and moving to a new town in April. So much preparation needed. And I will be leaving the job I love and taking a new job (with the same company). I am so worried that it won’t be like the job I have now. I love my job! Anyway….just soooooo much to think about and do. Scary!

    #ChronicMigraineSyndrome #Sarcoidosis #PolycysticOvarySyndrome #UndiagnosedAutism #ADHD #HypothyroidismUnderactiveThyroidDisease #ChronicDepression


    Symptoms Worsening #RareDisease #TheMighty #MightyTogether #IIH #IdiopathicIntracranialHypertension #Migraine #IntracranialHypertension

    Champions adjust, and I am currently learning this the hard way but that's okay. I have my faith and my support system. I try to count my blessings. I started having blackouts. I can't ignore it. I see spots and sometimes can't see anything. I constantly feel the pressure in my head now the lowest it goes is a 6, sometimes I get random stabbing pains in my eyes. I've been getting episodes of weakness where I feel lightheaded and dizzy and I lose my balance, it makes me concerned that I will pass out, especially since I'm still working full time as a Medical Receptionist. My vision has worsened. My glasses are now too weak of a prescription. I go to Lens crafters Saturday thank God. I can't drive, which I never really did to begin with besides practicing. I realized this when my husband told me "don't feel bad because even if you wanted to drive I wouldn't let you right now because I'd be afraid of what could happen if you have an episode on the road." It never even occured to me until now. I count my blessings daily. I'm alive I'm fighting. We will find a cure. We will not suffer alone. 👊🏽 #IdiopathicIntracranialHypertension #IntracranialHypertension #RareDisease #ChronicIllness #ChronicPain #ChronicMigraineSyndrome #Migraine #PsuedotumorCerebi #rarediseaseawareness #TheMighty #MightyTogether #CheckInWithMe #mightystrong #ChampionsAdjust #StayStrong #CheerMeOn #grateful #TheLittleThings


    So sick of feeling bad #ChronicDailyHeadache #Headache #MigraineWithAura

    Struggling with a headache today. Have been all week actually. I took meds and it is starting to go away but it has done this several times just to come back. Ugh!!!! #Sarcoidosis #PolycysticOvarySyndrome #MyalgicEncephalomyelitis #HypothyroidismUnderactiveThyroidDisease #ChronicMigraineSyndrome #Depression #Anxiety

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    Emgality questions #ChronicMigraineSyndrome

    I was wondering if anybody has been on Emgality long term? It worked pretty well for quite some time. Then, I started experiencing a lot of visual aura and I had only had a few episodes of that before. My migraines are becoming more frequent. I'm back up to 3 or 4 a week. I have other primary headache types as well but I'm thinking that the Emgality has stopped for me. Has anybody else had a similar experience?

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