How CH's destroyed my life.

This topic contains 6 replies, has 6 voices, and was last updated by  HOSIE 10 months ago.

  • Author
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  • #8719

    Rebecca Collins
    Participant

    Hey folks, my name is Ryan. We all know how this horrible affliction can have an effect on our daily lives whether its mental or physical or what our loved ones goes through while we suffer. I’m a 10 year vet when it comes to cluster headaches and a chronic sufferer. Cluster headaches destroyed my life. These last 5 months have been complete hell. I lost my partner, lost my job that I loved, losing my dogs and now losing my home, all because of cluster headaches. I have no medical insurance so all money for ER visits and failed medications come out of my pocket, thus leaving me with a negative balance in my checking account that I can do nothing about. I applied for food stamps, Medicaid and disability, but its a waiting game for paperwork to be processed. I’ll be homeless by the end of the month but hopefully I’ll have food stamps and possibly Medicaid. My attacks are so chronic, random and strong that I can’t hold down any job that has a set schedule and because this condition prevents me from working, I cannot claim unemployment benefits. My power will be turned off tomorrow at 5pm so I’ll have to use the library to get internet access. It’s so hard to get help and I’ve been trying so damn hard. I’m just so depressed and losing my dogs just kills me because they’ve been the best emotional support for me through all of this. Why do these attacks keep getting stronger? I could at least handle the middle of the night 20 min attacks but now its 2 to 3 hours per attack. Everyday, every frickin’ day. I set up a go fund me page to try to at least raise money to keep my dogs and my apartment but I’ve gotten no response. I don’t have much of a family so no help for me there. Not sure what I do at this point. At least turning here to this site, with others like me, gives me some sense of being heard and understood. Feels better than being ignored for 5 months until your life falls apart. I’ll keep fighting, but I’m so, so tired.
    Thanks for listening.

  • #8721

    MimiSaegert
    Participant

    im a 17 year vet of CH, chronic migraines and complex migraine disorder. i literally feel your pain. ive been without treatment since december bc ive stopped responding to them, got meds that dont work and after suffering from a massive stroke like incident in july ive lost my job and use of my left side. i have no encourging words other than you arent alone, keep fighting. im currently suing my insurance company for pain and suffering bc ive been denied life changing surgery. even when its hopeless keep fighting.
    Melissa

    • #8722

      Rebecca Collins
      Participant

      wow, that’s brutal. I really hope you can get some kind of closure for wht happened to you. that’s just not right. doctors have been messing me up too, for the last 10 years. Its bad enough to suffer form CH’s but to have doctors make it worse is just wrong.
      good luck Melissa, I feel for ya.
      Ryan

    • #9264

      skolb32
      Moderator

      Hi Ryan. My story has many similarities to yours. I was already on social security disability and receive alimony before these attacks started. I get $30 per month in food stamps and my net income is $1426 per month. It is tight, but I get by. I can’t imagine how you are getting by but I want you to know that I understand. It is very hard being so ill and having nobody to support you or even care. I have been suicidal this entire time. The headaches started in September and got worse and worse. I don’t know if I will ever get full relief. I am so tired and weak it is a chore to get in the shower more than once or twice a week.
      I hope you are able to receive my message and know that somebody understands and cares. Please know that I will be thinking about you. Being sick, in pain and lonely is a shitty way to have to live. I Am so sorry for your circumstances.

  • #9036

    Anonymous

    Thank you both for your open, honest stories. Words fail in the face of such suffering. I just wanted to let you both know that your CHSG family is here for you. Keep up the fight and reach out whenever you need to.

    Tammy

  • #9278

    AnneT
    Participant

    And why are people like Ryan forgotten? HE HAS A FUCKING DEBILITATING ILLNESS! At least I’m still able to work and support myself! Why am I complaining about my shit when people like him are destitute and without remedy or recourse? GODDAMMIT! It seems like no one really cares about this disease! It’s horrendous! Ryan, I’m so sorry! I’m so sorry that I posted my selfish thoughts before I read yours! My life has not been destroyed…but yours, and I’m positive many countless others, have been torn apart…Please accept my apologies for being so self-absorbed…I really wish there were something I could do to alleviate not only your pain and suffering, but the pain and suffering of all cluster patients.

  • #10458

    HOSIE
    Member

    So I wanted to follow up and see how you doing now? Has anything changed for you? Are you trying any different medications? I hope you were able to stabilize your life.

    JC

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