Cluster headaches...

Throughout my childhood, I'd occasionally get a headache that would make me cry. It was immensely painful, lasted for hours, and nothing would alleviate it.

For the past two weeks, I've gotten one every night. And though all of you have some mental impression of what a headache feels like, know that this is on a completely different scale. It's a spinning blade behind my right eye, slashing through my brain with a constant, piercing intensity unrivaled by any pain, joy, sadness, love, or passion I have ever felt. I become nauseous and short of breath. All I can do is curse and writhe.

I was taken to the ER last week and diagnosed with cluster headaches, a neurological disorder which has driven people to suicide. I wanted to know if there were any other sufferers who have medication/coping advice, stories, or just want to share a collective "I feel your pain".

I get cluster headaches. 37
I do not get cluster headaches. 18
I was not familiar with this disease. 16
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Comments ( 20 )
  • bashprompt

    The only thing that works for me is oxycodone, best drug in the world for stopping pain dead. I'm a non-metabolizer though (CYP2D6 cytochrome deficient) so aside from morphine free base, diacetyl-morphine (heroin), and oxycodone, no analgesics work for me. Even hydrocodone which is SO similar in molecular structure doesn't work as it is an mU agonist not an mK (opiod receptors being bitches is common with the above cytochrome deficiency, to add insult to injury).

    There are tens of thousands of people in the same boat as you, and most doctors underperscribe, and most laws regarding meds make life incredibly hard to the point where I've actually heard of instances of cluster-migraine sufferers moving to nations where euthanasia is legal to put themselves out of their misery. Sadly attention to and understanding of these things is a step back into the dark ages in most places. I live in Australia. I hope this helps you, or other readers, get some perspective.

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  • adtjoel

    my mother have suffered with terrible and extrenely painful migraines her entire life and I imagine this is similar. She has some pills which help to stop them happening but still do from time to time.

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  • wigsplitz

    I doubt morphine would even help. I was hospitalized for extremely high blood pressure, and at the same time I had massive headaches (partly due to the blood pressure, but not completely). I was given morphine by IV and it did nothing.

    I got a prescription for Imitrex, it does help. From the consumer information:

    "Sumatriptan is used to treat the symptoms of migraine headaches (severe, throbbing headaches that sometimes is accompanied by nausea or sensitivity to sound and light). Sumatriptan is in a class of medications called selective serotonin receptor agonists. It works by narrowing blood vessels in the head and stopping pain signals from being sent to the brain. Sumatriptan does not prevent migraine attacks."

    It's worth a try. Is your blood pressure normal? There's also a med called clonodine, it's for blood pressure, but has lots of other uses, it might help you. From the consumer info:

    "Clonidine is used alone or in combination with other medications to treat high blood pressure. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. It works by decreasing your heart rate and relaxing the blood vessels so that blood can flow more easily through the body.

    Clonidine is also used in the treatment of dysmenorrhea (severely painful cramps during menstrual period), hypertensive crisis (a condition in which your blood pressure is very high), Tourette's syndrome (a condition characterized by the need to perform repeated motions or to repeat sounds or words), attention deficit hyperactivity disorder (ADHD), menopausal hot flashes, and alcohol and opiate (narcotic) withdrawal. Clonidine is also used and as an aid in smoking cessation therapyand to diagnose pheochromocytoma (a tumor that develops on a gland near the kidneys and may cause high blood pressure and fast heart rate). Talk to your doctor about the possible risks of using this medication for your condition."

    Might help, worth a try.

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    • flutterhigh

      I was prescribed Verapamil, to be taken daily, to offset the cycle of the headaches. They gave me Sumatriptan for the actual pain, but I haven't had a chance to try it yet. My father also suffered from cluster headaches, and told me that the injections worked far better for him than the pills, but that either way the result was only a numbing effect - nothing he tried ever erased the pain.

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  • whatadalliance

    I was recently diagnosed w/ neuralgia. Basically this just means there are some weird/messed-up nerves in the back of head, and it confuses pain, pleasure, etc. So if somebody were to yank my hair there, or just touch the skin, it causes insane pain and I'll have a pounding migraine for a whole week, maybe. The issue w/ neuralgia is that it's very easily misdiagnosed and they did an MRI, EKG, blah blah blah - it showed nothing. Really, it's only diagnosed from description and response to medications.
    They put me on Neurontin, 100mg a pill - an anti-seizure med.
    I took it for a while and I remember walking around my room, and this weird sensation overtook me. It's hard to explain. Like a zap, it made me twitch and freaked me out. It didn't happen again, and after 2 months of taking the pill, if you were to pull my hair in the damaged area, it'd feel numb.
    Pull your hair, it just feels like you're pulling your hair right? Okay, let's say you have a bruised toe, and you were to press extremely hard on it - it'd have that numb sensation. That's how it feels.
    My neurologist explained that Neurontin works for almost any kind of migraine, headache, whatever. It takes a while to get used to, and the first 3-4 weeks, you're dealing w/ terrible sleeping urges at the worst moments.

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    • whatadalliance

      And if I was misdiagnosed, and DON'T have neuralgia; Hey, I got some free anti-seizure meds. Yummy.

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  • joybird

    Just researched treatment for this and there are quite a few treatments you could try. I particularly liked the water treatment, though don't have the medical expertise as to why it might work.

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  • BurnaBaby27

    Just curious, why can't anything alleviate the pain? There's a pain reliever for a lot of different things.

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    • flutterhigh

      I just meant nothing I've tried - I'm sure morphine would help but I've never had access to it. But over-the-counter meds and the like do absolutely nothing. I've been prescribed some medication but I'm not sure whether or not it helps yet.

      Cluster headaches also don't seem to be very well understood - it's pretty rare, there's no known cure, and it's difficult to stop the pain when it starts.

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  • Yumazing

    My friend has cluster headaches. It's horrible. She once had a continuous headache for two weeks.

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    • flutterhigh

      Did I inspire you to change your photo?

      LOLOLOLO

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      • Yumazing

        Lol, not you personally, but a ton of people did. It just annoyed me.

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        • flutterhigh

          Yeah I was being facetious at the time, but it's the truth. Ah, the drawbacks of beauty. I struggle with it daily.

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          • Yumazing

            Haha, you're also very modest.

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  • graphic_nature

    I have suffered from cluster headaches for as long as I can remember, I get at least a mild pulsating in my left temple and eye every other day, but JEEZ this post sounds so whiny. People have been driven to suicide over a breakup, some people are just idiots.

    Get on a good sleeping schedule, try to eat well, drink lots of water, and what I can't live without: peppermint oil. Buy some 100% pure peppermint aroma therapy oil and smear it on your temples and forehead. The cool burning feeling helps greatly to take your mind off the pain. It's like head-on extreme. Tantric oil that comes with Fiji Tanning lotion has the same effect with a more citrus scent but it's harder to get a hold of.

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  • pixie_dust

    I remember watching a program from the national geographic series about LSD and how it's an effective treatment for cluster headaches. you should watch it. I cant quite remember the title of the program, but LSD is in the title, so try to search that.

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  • xpiecemealx

    Have you tried the prescription Maxalt? They help my migrane headaches very quickly and effectively. I will pray for you.

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  • Banana?

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