Cluster Headache Awareness and Advocacy | AMF Webinar

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  • Опубліковано 26 лис 2024

КОМЕНТАРІ • 21

  • @JrellNY
    @JrellNY Рік тому +3

    Thank you for this. I am in my cluster headache period, and it is affecting me working and my lifestyle even going to the store or shopping or doing simple things.

  • @ponzo1967
    @ponzo1967 Рік тому +1

    OMG! 9 years to be diagnosed makes me want to cry 😭 I remember being treated like a drug seeker for four years before seeing a neurologist and getting a diagnosis was so validating and hopeful.

  • @huyton33
    @huyton33 Рік тому +1

    Really enjoyed this webinar! As someone who has suffered from migraines for the past 42 years this was a great insight into the issue. Hope to see more of these webinars in the future!

  • @ponzo1967
    @ponzo1967 Рік тому +1

    I bought a an electric bug zapper because of the mosquitos here in Florida and when a moth hits it if I get a whiff it can trigger a cluster headache but only when im in a cycle. An interesting thing i noticed is when I lived up north in Indiana my cycles were almost always in the fall but down here in Florida they hit me during summer.

  • @ponzo1967
    @ponzo1967 Рік тому +1

    30:10 yes! I grew mushrooms in 2017 and went into a five year remission, the first and only remission lasting more than one year and skipping a year only happened 3 times in 38 years. There is something to it i believe.

  • @annkavanagh8110
    @annkavanagh8110 Рік тому +1

    My son is suffering with cluster headaches and he couldn't take any more he has about 8 attacks a day my heart is just broken seeing him in this pain he is waiting for oxygen and the injection!

  • @ponzo1967
    @ponzo1967 Рік тому

    Wish I had caught this live

  • @patsyizuorgu1703
    @patsyizuorgu1703 Рік тому +2

    😢😢😢😢in cycle and the misery is un matched, I have given birth 5 times and this is truly unimaginable pain😢😢😢

    • @ponzo1967
      @ponzo1967 Рік тому

      I'm just now coming out of my cycle, unimaginable pain is a true description. I can't believe nature doesn't provide the courtesy of passing out.

  • @JrellNY
    @JrellNY Рік тому +2

    Btw, you can use some of the videos i have on my channel of me having a cluster, in the future. They are there for awareness

  • @reginablaker7294
    @reginablaker7294 Рік тому +5

    One more thing…don’t ever let a Dr. dismiss you!! Go to a specialist if you can!! I had an ER Dr. once tell me that women don’t get clusters!! After I told him what he could do with himself and that he must know much more than my neurologist who happened to be the Chief of Neurology at the same hospital…he sighed and then said that I must be a textbook case…whatever he was trying to imply with ghat remark. Needless to say, I never had another problem with him again.

    • @ponzo1967
      @ponzo1967 Рік тому

      Yes , mine started in 1985 at age 17 and I was treated like a drug seeker and told to take Tylenol, I was so heartbroken and defeated. I had never had a tooth pulled and didn't know what pian medication was at the time. Finally my GF took me to a neurologist and said ,"Do Something!" That's when I got my diagnosis and first bottle of prednisone.

  • @maciejziara2271
    @maciejziara2271 9 місяців тому +1

    Plz help. I need oxygen and imigram. Plz

  • @DonDahlen
    @DonDahlen Рік тому

    Lamotrigine
    I’ve had cluster headaches for more than seven years now been on many medications that do not work
    But I’ve been using a medication called lamotrigine for few years now and has helped immensely please talk to your doctor to try it.

  • @mazie7952
    @mazie7952 Рік тому +3

    My Nero said headache should not be after the word clusters. Ppl.hear headache and think regular headaches
    My Nero calls them nerological disorder
    He said they are so complex that a cure is slim.

    • @ponzo1967
      @ponzo1967 Рік тому +1

      The word headache is so misleading to those around us. It's destructive to being understood. At least these days people can look at the internet if they want to understand. Before that all I heard was how bad someone's headache was one time and that they know. No you don't!

  • @kimfreeman9148
    @kimfreeman9148 7 місяців тому

    Would sound frequency help relieve cluster headaches?