chronic headaches

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    Chronic Migraine awareness

    Today I am featured as blogger on Chronic Migraine Awareness website. Please go support them as we try to raise awareness about these poorly understood and researched conditions.

    #chronicmigraine #ChronicMigraineSyndrome #ChronicVestibularMigraine #Migraine #MigraineBrainFog #MigraineWithAura #VestibularMigraine #migraineawareness #ChronicPain #Pain #ChronicIlless #Raiseawareness #ChronicMigraines #ChronicHeadaches #OccipitalNeuralgia #Dysautonomia #Fibromyalgia #ChronicFatigue #Spoonie #SpoonieProblems #spoonielife #Support #resilience #creativecopes

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    Nerve pain

    How can someone cope with nerve pain for years? I'm quite frustrated by this and just can't think straight anymore because of my pain.

    #Depression #Anxiety #ChronicPain #ChronicHeadaches #OccipitalNeuralgia #Migraines

    43 reactions 36 comments

    Living in a home with so many invisible illnesses.

    In my home we have a shopping list of invisible illnesses, and they are nearly impossible to manage all at once.
    The Ringleader (me) suffers from some sort of metabolic disorder that is going undiagnosed, an ongoing epileptic disorder that is going undiagnosed, C-PTSD, PMDD, Social Anxiety, Bi-Polar, Borderline Personality Disorder, Asthma, Migraines, joint pain, bulging disc's in the back, Auditory Processing Disorder, and Executive Function Disorder
    The Circus Bear (my husband) has C-PTSD, DID, Anxiety, undiagnosed arthritic joint pain in knees, right elbow, and back, Seasonal Affective Disorder, and withdraws from society as a response to Suicidal ideation, Post-Traumatic Arthritis.
    The Unicorn (daughter) has C-PTSD, fear of abandonment, Generalized Anxiety, Clinical Depression with self harm, Anorexia, and a profound sense of justice/injustice, if you betray her, are a hypocrit, or break a promise, you are dead to her.
    The Fire Drake and Ice Dragon (son) is Autistic, has severe suicidal depression, especially when bullied at school, Social Anxiety, Executive Function Disorder, C-PTSD, all negative emotions start as anger
    Finally, The Weeping Willow Dryad (mom) C-PTSD, Has endured 2 back surgeries that failed, chronic pain, Agoraphobia, Skleroderma, Raynauds, Rheumatoid Arthritis in her hands, Osteoarthritis in back and knees, Social Anxiety, Clinical Depression, and an emotional reactive disorder that has gone undiagnosed.
    As Ringleader I am in charge of making sure everyone takes their medications, at least tries to get to some sort of therapy, drive everyone to appointments, physical and mental. Know everyone's favorite foods, cycles of physical and emotional needs, understand who is feeling ill when. Get all meds for everyone from the pharmacy. Attend 90% of appointments. Get food for everyone, that they like. Listen to the complaints of every single one of them.
    When I finally speak about the negative behavior that is effecting people in the household, I get attitude.
    From screaming, to blowing the comment out of proportion.
    If I say "please stop answering people for me"
    I get "I will never talk again, you never have to hear my voice ever again"
    If I schedule a much needed test on the wrong day, I get guilty about it.
    If I say "I would have done _____"
    I am accused of telling people how they did it wrong.
    I am trying to manage my home and the people in it.
    All I really want to do is run away.
    I dream of tropical places, and travel, and being responsible only for myself.
    I feel like I am holding the whole place together, and without me no one will be able to function. This has been proven many times.
    I am so tired, so empty, burned out.
    The light I have always had is getting dimmer and dimmer, and I lost so many people because I had to protect myself from them in order to manage my home.
    I know this is all a ramble...rant, maybe none of it makes sense.
    I just needed to let it out somewhere.
    #ComplexPosttraumaticStressDisorder #BipolarDepression #ChronicDepression #Anorexia #BorderlinePersonalityDisorder #FearOfAbandonment #Autism #Agoraphobia #SocialAnxiety #ExecutiveFunctionDisorder #DissociativeIdentityDisorder #PMDD #TemporalLobeEpilepsy #Epilepsy #SeasonalAffectiveDisorder #EatingDisorders #GeneralizedAnxietyDisorder #Arthritis #Skleroderma #RaynaudsDisease #ChronicHeadaches #ChronicMigraines #InvisibleIllness

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    Truly. Small things can be great too.

    I am limited.
    This is my reality.
    I only have so much energy to go around and I need to pick and choose what to spend it on. Always having to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I don’t go down to zero either, because then I might not have enough for the next day.
    (Obviously I am not perfect at Pacing as I find myself doing too much on occasions as I get impatient with my limitations. Overall, I’d say I do pretty well with it.)

    So what do I choose to spend it on? Well, some mundane tasks need to be done like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out by trial and error. This is part of Pacing.
    Now, I am a very lucky Gal to have a super supportive husband and three kids that help me with some of the heavier chores, just would like to point that out.

    When the Mundane Pragmatic stuff have been taken care of I choose to spend my energy on stuff that fills my heart and soul with contentment. Whether they’d be Creative Coping Strategies like painting, drawing, forest bathing, expressive writing or listening/making music (now the latter depends fully on headache pain levels but within my capacity, music will always have a part in my life) or just being with my family in the moment.
    I also am a half of a duo who talk about exactly this in podcast we have named Creative Copes- A labor of love for ourselves and hopefully an aid to others.

    This is what I spend my energy on.
    Things that matter to me; that settles body and mind and makes my heart pumping blood.
    I am not all knowing and cannot be Worldly Great: I am clearly not meant to be a main figure in changing the world lol.
    But I can do Small things in a Great Way, for myself and others, and hopefully someone can pick up what I am putting down and feel more inspired to get up every morning and meet the day head on. Love and light ❤️
    #pacing #CopingTips #MECFS #Fibromyalgia #ChronicHeadaches #ChronicIllness #Spoonie #spoonielife #MyalgicEncephalomyelitis #Anxiety #Agoraphobia #ChronicPain #dynamicdisability #ChronicPain #Pain #Acceptance #Grief #TheMighty

    13 reactions
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    Migraine Update

    #Migraine #ChronicHeadaches #postconcussivesyndrome #SleepApnea

    my neurologist was very kind and prescribed me some vitamins and rescue medications. She also wants me to have a sleep study to rule out sleep apnea as a cause of worsening migraine and tension headaches.

    I'm having less headaches and migraines this week which almost makes me feel like an imposter. Does anyone ever feel that way?

    #BipolarDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #ADHD #Transgender

    6 reactions 1 comment
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    🩻 I’m back! 🩻

    Sorry, I’ve been a bit absent recently! I hope you didn’t think I’d forgotten about you all? You’ll be glad to hear that my chiropractor fixed me so now I’m back (pun intended 🩻🤗🤣)!! My body may be held together by Kinesiology Tape but it helps when you can have some fun with it! 🤷🏻‍♀️😂 I’d be lost, in agony, and falling apart, without my amazing chiropractor!!
    #functionneurologicaldisorder #FND #fndwarrior #fndaware #fndhope #fndhopeuk #fndaction #FNDAwareness #JointHypermobilitySyndrome #Hypermobility #HypermobilitySyndrome #HypermobilityWarrior #JointPainWarrior #Jointpain #JointPainRelief #JointHypermobilityAwareness #ChronicFatigue #EhlersDanlosSyndrome
    #ChronicPain #Chronicpainwarrior #ChronicPainRelief #ChronicHeadaches #ChronicMigraines #chronic #ChronicIllness #Painrelief #chiropractic #chiropracticadjustment #dryneedling #dryneedlingtherapy #Acupuncture #kinesiologytape #kinesiology #kinesiologytaping #ktaping #ktaped #SpoonTheory #Spoonie #SpoonieProblems

    10 reactions 12 comments
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    Severe Neck/Shoulder Pain

    In bad pain from something called Levator Scapulae syndrome. It’s causing pain in my shoulder and neck and radiating to my head causing headache 🤕 and fatigue. I’m in a lot of pain and feeling frustrated, because I’ve been seeing a chiropractor 👩‍⚕️ for years and still experiencing problems. Even though she’s fixed my severe atlas (C1) misalignment, I still have problems in the other vertebrae which also connect to and cause pain in the surrounding ligaments and tendons 😫my shoulder blade also snaps/grinds when I move it. Don’t know what to do. Anyone experienced this type of pain and has anything helped?
    #ChronicHeadaches #neckpain #shoulderpain #chiropractic

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    😬 The “Pretend I’m Not In Pain” Face 😬

    Don’t know how someone got hold of this picture of me?! 🤔😂 And I know there’s a lot more people out there who feel that this is them too! When you live with chronic pain every day you get rather good at displaying a front to try to hide behind because we don’t want others to know the full extent of the pain we’re really in. When I go into my “Pretend I’m not in pain” persona I do so because I don’t want to burden others by showing how much I’m really struggling. Part of me thinks that, if I can ‘hide’ well enough then people will accept me more but the truth is that if people are only willing to accept the positive side of me and not accept the daily challenges I face because of my chronic pain then are these people really worthy of being in my life? For me that answer would have to be “no” because if people want to be in your life then they need to accept everything about you, especially how we are on ‘bad days’ because those are the days that we need people to support and encourage us the most.
    #ChronicPain #ChronicIllness #FunctionalNeurologicalDisorder #JointHypermobilitySyndrome #Disability #ChronicHeadaches #ChronicMigraines

    20 reactions 9 comments