Chronic Vestibular Migraine

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Chronic Vestibular Migraine
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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.
    chronicmigraineawareness.com/2023/03/07/mitas-story

    #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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    When do you know it’s time to try a new migraine medication?

    Switching from one medication to another, or adding a new medication to your treatment plan, may be necessary throughout your treatment journey for migraine.

    If you are experiencing ongoing symptoms, intolerable or unpleasant side effects, or even new-to-you symptoms, it may be time to discuss changing your treatment plan with your doctor or care team.

    If you have modified your treatment plan, when did you know it was time to try a new medication? Share your experiences and advice for others in the comments below.

    #Migraine #Fibromyalgia #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicDailyHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

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    We want people to feel less alone.

    My friend and I host a Podcast called Creative Copes. It’s a labor of love- for ourselves, our own journeys and the compassion for others. We hope it becomes an aid for people in similar situation as us. We also have this idealistic approach of trying to end stigma and raise awareness about these conditions life has thrown at us by openly talking about them.
    We set out to share our personal stories and how we creatively cope; with humor and with sprinkles of scientific studies that we have looked up.

    We want YOU to feel less alone.
    Honestly, we all want to feel less alone on this windy road that’s is chronic illness.

    You can find us on Instagram @ creative.copes and on any listening platform just search up the name. Listen in, subscribe and message us. We would love some conversations with like-minded people.
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    #Podcast #ChronicIllness #ChronicPain #Pain #Fibromyalgia #MyalgicEncephalomyelitis #Agoraphobia #Anxiety #SocialAnxiety #CopingTips #Endometriosis #MentalHealth #spinalinjury #OccipitalNeuralgia #Dysautonomia #ChronicVestibularMigraine #Migraine #Community #Disability #youarenotalone #Spoonie #SpoonieProblems #spoonielife #CheerMeOn

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    I know, I know… but here it is. Consider it.

    We are two friends both with chronic and mental illness, who decided we wanted to bring to the forefront, and open up real conversations about, how we are coping with our diagnosises. We use humor, personal experiences and scientific studies with what can potentially help; has helped; and what we are willing to try to stay sane in the midst of what we’ve been saddled with by life.
    We’re also doing this to try to end stigma, raise awareness as well as discourage toxic positivity and ableism to take more root in society.

    We would love your support and also your input on what coping skills you all use- join the conversation! Follow us on instagram @ creative.copes and on your favorite listening platform and comment away! The more we talk, the more mainstream it will become.
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    #keeptalking #jointheconversation #jointhefight #RealTalk #EndTheStigma #Raiseawareness #MentalHealth #physicalhealth #Ableism #Toxicpositivity #copingstrategies #CopingTips #beyourownadvocate #ChronicIllness #ChronicPain #ChronicMigraines #ChronicVestibularMigraine #Fibromyalgia #GeneralizedAnxietyDisorder #SocialAnxiety #Agoraphobia #Dysautonomia #CrohnsDisease #Endometriosis #RaynaudsPhenomenon #MyalgicEncephalomyelitis #ChronicFatigue #OccipitalNeuralgia #wecandothis #LetsDoThis

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    😬Our ‘Public Persona’😬

    This is exactly what I, and countless others, do everyday - we put up a ‘public persona’ to hide what we’re truly going through. We pretend that we aren’t: in #AGONY or #depressed or #exhausted or #anxious . We pretend because we are #scared of how others would treat us if they really know what we were going through. The thing is though, by pretending we are something we’re not, we are giving ourselves more #Stress but also denying someone the opportunity to help us deal with the things that are really going on in our lives.
    #itsokaynottobeokay #itsoktoneedhelp #ChronicIllness #chronicillnessawareness #ChronicPain #chronicpainawareness #mentalhealthmatters #MentalHealth #MensMentalHealth #CollegeMentalHealth #MentalHealthAwareness #Disability #IntellectualDisability #DevelopmentalDisability #InvisibleDisability #disabilityawareness #invisibleillnessawareness #FunctionalNeurologicalDisorder #FND #FNDAwareness #JointHypermobilitySyndrome #ChronicMigraineSyndrome #ChronicVestibularMigraine #HemiplegicMigraine #Migraine #BipolarDepression #ChronicDepression #Depression #ChronicFatigue #Anxiety #SensoryProcessingDisorder #BrainFog #PanicAttacks #PanicDisorder #notalone #BeYourself

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    Hey everyone! We’re Mita & Jen and new here!

    We are two friends wanting to swap ideas on creative coping skills with like minded people! We host a podcast called Creative Copes about this very subject with new topics every week. Maybe some of you can give us ideas what to talk about in upcoming episodes?
    #ChronicIllness #dynamicdisability #CrohnsDisease #PTSD #Anxiety #Agoraphobia #PanicDisorder #MentalHealth #MyalgicEncephalomyelitis #Fibromyalgia #OccipitalNeuralgia #chronicmigraine #ChronicMigraineSyndrome #ChronicVestibularMigraine #Migraine #Endometriosis #mentalhealthadvocates #chronicillnessadvocates #Spoonie #spooniesupport #spoonielife #copingskills #copingstrategies #creativecopes #creativecopespodcast #creativecoping #Podcast

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    Are there any questions or topics you wish your neurologist would discuss with you in your appointments?

    Sometimes you just want your neurologist or headache specialist to ask how you’re REALLY doing, or you want them to check in on something you mentioned during your last appointment.

    Are there any questions or topics you wish your doctor would proactively discuss with you? A conversation you wish they’d start because you’re too nervous or afraid to raise it?

    If you feel comfortable sharing, add your questions in the comments section below or read through others.

    #Migraine #Fibromyalgia #ChronicDailyHeadache #ChronicPain #ClusterHeadache #SUNCTHeadache #ChronicVestibularMigraine #ChronicIllness #Endometriosis #mightywithmigraine

    4 reactions 6 comments
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    Things are bad and I cannot get the help I need

    I don’t know what do anymore
    I am actively in crisis and it didn’t have to be this way. I am mad. I have been advocating for myself for years. No one is listening and my needs are going unmet.
    All I hear every day is that there are no options for me. Not because I don’t need them. But because I don’t meet criteria.
    It’s really hard to accept.
    I now have to fight an agency that is very clearly acting unethically (see story I posted a few days ago). I am so lost.
    I am tired of hearing people tell me what “should” be happening. I know. I have been saying it for years. But people need to realize just because I “should” be getting help, it doesn’t mean that I am or will. Life doesn’t have to make sense. I wish I was still part of the club that believed it does.
    There aren’t always solutions to problems when you’re facing them. That’s another thing people keep telling me- there are always solutions. But I’ve been in crisis for years; telling me there is a solution coming is unacceptable. Especially because the people who have told me this aren’t still involved in my case because they kind of just drifted off.
    Even an agency is telling me my demands for housing are too high (literally me on repeat every day: I need a place that is safe. Ideally first floor apartment because of #ChronicVestibularMigraine #ChronicMigraines
    Ideally a washer or a hook up in my living space because of #Agoraphobia and #ComplexPosttraumaticStressDisorder which make it really hard to perform activities of daily living
    Ideally central air because of #PanicAttacks
    There is literally no one who helps me navigate my daily life.
    This agency hasn’t even seen my medical records. How can they tell me I’m being too demanding? Is it that I’m too demanding or that you can’t find something that meets my medical needs? Cuz those are two totally different problems that should be handled in two different ways. One is a change I have control over and that I need to make, the other is a problem they need to help me navigate. I’m pretty sure it’s discriminatory if they don’t.
    (They also haven’t even actually done much looking- there were exactly zero attempts made to find housing when I had my housing voucher, as noted in my file)
    What do you do when you are spending all of your energy just trying to get services to start working on getting your most basic needs met?
    #CheckInWithMe

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    “Proving”

    I am so tired of being expected to prove why I cannot work, how sick I actually am, all of the things I have tried, why something isn’t a viable suggestion- all.of.the.time.to.everyone. I’m constantly confronted with people who tell me I don’t have to explain myself yet put me in situations where they are asking me all of these questions that do nothing other make me re-explain it all again and leave me feeling defensive, minimized, dismissed, and invalidated.
    It’s a constant conversation thread with each person I interact with. There is no normalcy in my life anymore.
    Because I’m homeless and reliant on others for their kindness and generosity- I really cannot stop having these conversations or set better boundaries. I have tried. I cannot force people to understand.
    Often going with my favorite line that everyone uses “you know you are safe with me.” Stop telling me that. You don’t get to define who I feel safe with.
    It’s really making my symptoms a lot worse.
    #ComplexPosttraumaticStressDisorder #CPTSD #DomesticAbuseSurvivors #ChronicVestibularMigraine #Agoraphobia #PanicAttacks

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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

    18 reactions 11 comments