chronic migraines

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    I bought a star projector for my dissociative heavy days

    I think I accidentally hacked #ComplexPosttraumaticStressDisorder
    This is about to make my dissociation so much less distressing
    #CPTSD #ChronicMigraines #Agoraphobia #PanicAttacks #DomesticAbuseSurvivors

    5 reactions 3 comments

    Client rights and self advocacy

    Hi friends
    Things have been weird. I’m getting a little more support outside of the help I gratefully receive here. But I’m feeling really detached and alone.

    I’m still finding it hard to be believed. It’s getting a little easier but it’s tiny steps and when something like this happens, I feel discouraged.

    I had one of the worst attempts at advocating for myself because the person just constantly told me I was wrong about what I said I was experiencing. She did not let me complete my sentences. The condensation was so clear in her voice. She could hear how much I was struggling to talk and think. I had to stop her and say “ you hear how upset I’m getting, why are you continuing to argue with me?” I had to point out so many obvious things like “as the client advocate of this agency, you are not listening to what I’m saying.” Or “you continue to interrupt me and ask me questions which is why you are not understanding. Let me finish.” (She couldn’t understand why I was bring up something from five years ago… ummmmm if you let me finish you would hear because it’s still not resolved. So trust me- I know it was a long time ago.)
    She even found a way to tell me it was my fault that the agency hasn’t been helping me because i only just recently I told the case manager that I’m trying to figure this out. That was last week. I’ve been without services for over a year. Before that, I was getting not even the minimum of what is on my plan. So me saying something this one time doesn’t let them “off the hook.”
    She repeatedly said “I just can’t keep this straight.” with the implication it was my fault. I said “as I said before I have ptsd and struggle to communicate, remember, and think clearly.” When I would tell her about things she said “I find that hard to believe,” and “I’ve never heard of that.”
    She cut me off at one point and said “are we talking about housing or medicine because you keep switching back and forth” yes- when one doesn’t have access to their basic needs for years, that happens. And since both are equally important for survival it’s hard to not intertwine them. I wish I would have said “I am talking about my basic needs.” Period.
    Also- she kept switching back and forth and so I said it back to her.
    I’m dissociating more. My flashbacks have been intense. I was having them over the phone while talk to her. I said “I am having flashbacks I am trying to remember.” And she didn’t even acknowledge it or alter her approach. It was like I never said it.

    There is so so so much left. It’s weighing so heavy. I have a plan moving forward to… well I guess just get louder. It’s concerning that these individuals are the client advocates for my state’s department of mental health services.

    #ComplexPosttraumaticStressDisorder #CPTSD #ChronicMigraines #Migraine #Agoraphobia #PanicAttacks #ADHD #WritingThroughIt #CheckInWithMe #DisabilityAdvocacy #DisabilityRights

    21 reactions 9 comments
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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

    1 reaction
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    Snap benefits

    I just dropped my salad on the ground.
    Anyone know who I can contact to see if the US government will give me a coupon for my daily allotment for nutrients because that $5.00 bag of lettuce is not consumable? Or should I just eat the expired food left at pantries after I finally manage my anxiety enough to stop throwing up to go there?
    (This is in jest… sort of.)
    #Humor #TheDisabledLife #DisabilityAdvocacy #DisabilityBenefits #ComplexPosttraumaticStressDisorder #ChronicIllness #ChronicMigraines #Agoraphobia #Anxiety #PanicAttacks #ADHD #Migraine

    4 reactions 1 comment

    SNAP benefits/EBT/food stamps & SSI

    I’m confused.
    Like- actually legitimately confused…
    Am I missing something?
    I just found out my snap benefits are being reduced 🤦🏻‍♀️
    Because they adjusted for cost of living
    So since we will be “getting more money in disability” because of “inflation”, snap benefits will be “reduced” because our “income increased” again- because of cost of living. So, things are more expensive, they increased disability payments because of this, but now they are taking away money? Am I missing something?
    Shouldn’t we also be getting more money in snap since food prices also increased?
    I already don’t have the things I need to survive. I have agoraphobia and I cannot access food banks. I also have slightly disordered thoughts that can prevent me from eating entirely. If there are too many ingredients or packaged foods, I won’t eat it. Especially when stressed. And this is going to put me in more stress.
    #Disability #ComplexPosttraumaticStressDisorder #DomesticAbuseSurvivors #Agoraphobia #PanicAttacks #ChronicMigraines

    27 reactions 18 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

    12 reactions 1 comment

    I’m not feeling okay

    Today was really hard
    I don’t usually struggle with #SuicidalIdeation
    It usually only occurs when I’m in the most desperate of times.
    I’ve been housing insecure for two years, homeless for a year and a half.
    People have truly stopped caring about what happens to me. I can’t even process all of the trauma that is happening around me.
    I have no where to go.
    I have reached the top of all of the agencies with absolutely no one giving me help. All I hear is “there has to be options.” No one is helping me deal with the reality of my situation. They just keep wanting to talk about what it should be.
    I am being given no avenues for hope. I have tried so so so hard to plant these seeds. But I can’t keep doing it while being trampled.
    I don’t want to live this life any more. I don’t know how to get out.
    #DomesticAbuseSurvivors #ComplexPosttraumaticStressDisorder #Agoraphobia #PanicAttacks #ChronicMigraines

    47 reactions 20 comments

    I’m feeling really disconnected lately

    Things have kind of been okay recently. Well that isn’t necessarily accurate. But I’ve been talking more and feeling slightly more in control.
    But I am still missing that fundamental social connection.
    I try really hard to manage my expectations for support. I’ve been basically deprived of reliable, appropriate personal support for years despite trying to manage my expectations, make them clear, and adjust my relationships with those as necessary.
    There are just some people who are never going to be able to provide me compassionate support and I am trying to remember that when I reach out for help. They are the friends who can stay in my life as long as they respect my boundaries, as I don’t need “support” from everyone. There are some people that are truly just the fair-weathered ones. If I still hold value for our relationship during those fair weathered times, then I’ll keep them.
    But I am experiencing massive amounts of trauma with continuing reduced supports. It is coming down to me arguing with insurance companies for months just to get a prescription filled that I’ve been getting for a decade. Actually two prescriptions now.
    I talked to a friend and she said she would be more supportive. And she was. For about two days. This has happened before. So I’m internally navigating that relationship. We have been friends for over half of my life. That does not mean that i owe her a place in my life.
    I also think I need to get better at accessing the mighty and reaching out for support here.
    I appreciate any ideas on reaching out specifically on the mighty.
    Thank you 💗☀️
    #ComplexPosttraumaticStressDisorder #Agoraphobia #PanicAttacks #ChronicMigraines #DomesticAbuseSurvivors #PTSDSupportAndRecovery #ADHD

    4 reactions 1 comment