I Have Cluster Headaches

Personal Stories, Advice, and Support 76 People

    Am I the Only One?

    I first had these headaches when I was 14, but they weren't diagnosed then.  When I was 24, I had another "cluster" of them, and after 3 months or so I had a diagnosis, no effective treatments were available.  For the (lucky) uninitiated, they're a...
    Mandragora Mandragora
    46-50, F
    6 Responses Sep 30, 2007

    What Is Wrong With Me Cluster Headache

    I have episodic cluster headaches I'm currently in remission hopefully missed them this year but mine usually start at the end of July and last for aprox 2 months they come the same time every day 7:26 feel like theirs something crawling around above my right eye then 8:32 bang I...
    Buxted Buxted
    4 Responses Aug 14, 2011

    Finally Gone

    Finally Gone, I suffered for several years, at least 8 or 9.  I had run into a friend from work who currently suffers from Cluster Headaches and I had mentioned to him that I was able to get rid of them. He made me realize if I can, perhaps my story can...
    finallygone finallygone
    1 Response May 22, 2010

    My First Post

    I was diagnosed in 2001 after many years of not knowing what was wrong with me. The pain was indescibable and the terror made me 10 times worse. Although I still have daily and nightly attacks I am learning to deal with them, Oxygen,Imigran Injections, lithium, verapamil...
    countrygal1 countrygal1
    Mar 22, 2009

    My Heart Goes Out...

    ...to all those who have cluster headaches and to all those who help support those that do. I have had episodic cluster headaches since 1989. The episodes usually last a couple months, with anywhere from 10-22 pf (pain-free) months between. My father had them as well, though...
    WileyP WileyP
    61-65, M
    2 Responses Nov 16, 2009

    I know how much suffering cluster headaches can

    cause. They can completely turn your life upside once a cycle begins. Please check out this forum for help and support. You will find more knowledge and relief there than many doctors could afford. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=general
    FullCircleO FullCircleO
    31-35, M
    Aug 10, 2014

    The Day My Cluster Headaches Came Back

    well 5 days ago on my 36th birthday i had felt very tired heart pounding out my chest finding it hard to walk up the stairs so took myself to hospital because i had a feeling the medication i was on varapimil was doing me some harm i was on a high dose 1000mg daly and had been...
    andysadventure andysadventure
    36-40, M
    1 Response Oct 19, 2013

    I Suffer From Cluster Headaches.

    I am a 22 year old female who was diagnosed last year. I have had them for at least 6 years now, it just took this long to be diagnosed. Imitrex was a miracle, life saver for me. I am episodic, with my cycles coming about once a year and lasting 2-3 months. right side of my face...
    Glidergirl1012 Glidergirl1012
    4 Responses Jul 2, 2013

    Two or Three weeks ago,

    I woke up in the middle of the night and I just had this incredible pain on the left side of my head. I thought that it would just go away because every blue moon i'll wake up like that and it goes away, but the pain was unbearable! I woke mom up telling her I felt nauseous and...
    JaimeJackson JaimeJackson
    1 Response Apr 15, 2014

    Cluster Headaches

    Having suffered 3 to 5 bouts a year lasting from 2 to 3 weeks a session. Treated by many different specialists with a variety of drugs to no avail, even to the point of having my upper left teeth removed. It was recommended at one point by one specialist to have the left...
    lhaz lhaz
    1 Response Aug 17, 2012

    Hell Is In My Head !!

    hello my name is matt and i am a 55 yr old man. for 30 plus yrs i have suffered from attack of cluster headaches. for the first 20+ yrs i and all the fancy doctors tryed anything and everthing i always ended up in the same place......the ER room at 2:30 in the morning. the shot...
    nwstlman nwstlman
    51-55, M
    6 Responses Jun 25, 2010

    I Hope This Can Help Someone.

    I've suffered with CHs since 1989 and in 2006 I went into deep prayer at the onset of an episode. I have since been practicing a technique that has helped with my episodes immensely. My headaches typically start with pressure which builds into a full headache. As soon as I feel...
    Marc1000 Marc1000
    Jul 31, 2012

    Chronic Cluster Headaches

    I started getting CH attacks when I was 25, did not know what hit me, firstly I was wrongly diagnosed, my doc thought I had a migraine, as every CH sufferer knows if you don't have the right medication the pain and the disturbance to your life is unbelievable, I was walking...
    stugiffy stugiffy
    41-45, M
    2 Responses Aug 10, 2013

    i had attacks of what is called cluster headache

    or suicidal headache. It cause me sever pain for 1- 2 hours a day for 30-40 days then disappear as nothing was there. at the time of headache i just close my room on myself and suffer for 2 hours of so hard pain. nothing kill this pain. cortisone kill it for 2-3 days and it...
    deleted deleted
    Sep 22, 2015

    I'm Dying, Somebody Help Me...

    I'm a 20 year old female, I'm struggling to live with this sh*t for 6 years now, approx. 3 attacks a day for the last 2 weeks, and it's getting worse. I don't know what to do. I'm very lonely, I don't eat, I'm afraid to sleep, and I'm really Really tired. I feel like I'm dying...
    LenoreMalacay LenoreMalacay
    22-25, F
    1 Response Oct 21, 2013

    Helpless Wife

    I am the wife of a Cluster sufferer and feel so helpless when my husband has an attack. I cannot do anything to ease the pain or comfort him. I am struggling at the moment to see him go through an attack. The pain he experiences is absolutely mind blowing and brings him to his...
    Bilby79 Bilby79
    31-35, M
    5 Responses Jan 14, 2013

    A Loved One Has CH

    I won't go into detail . . . People know how terrible this condition is. As I read the stories and the comments here, I see so much of what is typical -- bad prescriptions from doctors that don't help the sufferer and make him or her feel even more hopeless. For example, oxygen...
    jerrydej jerrydej
    1 Response Jun 2, 2013
    VioletPeacock VioletPeacock
    31-35, F
    1 Response Apr 3, 2014

    X Cluster Headache Sufferer

    I suffered for 10 plus years, I put my story at xclusters.com, I created the site to post it. Please read it and give me your input. I hope it helps.
    Xclusters Xclusters
    Aug 10, 2011
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