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Cluster Headache

Diagnosed with Cluster Headache

  • By Headbuzzin

    I was diagnosed with cluster headache over 10 years ago.I used to get them in the fall and they would linger for a couple of weeks and disappear.Currently they have returned about 7 weeks ago and show no signs of letting up.I usually get them about 3 to 5 am.If I take medication when I first feel one coming on,they will be bearable within an hour.I am considering going to a neurologist but am not sure if they could help

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  • By TrishaNP

    I have suffered from Cluster Migraines for 20 years and just recently mine have gotten out of control and I too made the
    choice to see a neurologist. It has made a significant difference in number of migraines that I have had. Even though my family doctor is very good he just did not have the experience to handle migraines at my level. The neurologist
    knows what questions to ask and what tests will be needed to pin point the cause, and what to prescribe specifically for your migraine.

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  • By Nancy Harris Bonk Moderator

    Hi Headbuzzin,

    Thank you for your question and being part of the Migraine.com community – we’re glad you’re here!

    I think it would be a good idea to find a doctor who is well educated in migraine and headache disorders. There are doctors who are board certified in headache medicine which is different than being certified in neurology. It’s not that neurologists aren’t good doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. You can read more about how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope that helps!
    Nancy

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  • By Nancy Harris Bonk Moderator

    Hi TrishaNP,

    Thank you for sharing that with us. Cluster headache (the official diagnosis code rather than cluster migraine) is considered one of the most painful conditions known to man. I’m happy to hear you have a good relationship with you doctor.

    Nancy

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  • By LFalcon

    Cluster-head for 20 + years. Started episodic went chronic for 12 last 3 back to episodic. I use a regimen of vitamins to beat back my beast when it hits (spring & fall). Try googling “batch’s regimen” for more info. I wish you good health in your fight for PF days.

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  • By lightweaver

    I have had Cluster headaches for 25 years. The one thing which helped was was Oxygen

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  • By Headbuzzin

    Thankfully my cluster headaches have gone away,don’t know why but not complaining.I no longer carry meds everywhere I go or worry about when the next attack will be.I wonder how much blood flow plays into this,with spring coming on I’m more active physically,can’t say that makes any difference or not

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  • By Feather

    I don’t get cluster migraine. I have started this past week getting cluster auras ,is there such a thing?They are very annoying.ln my youth I would get terrible painful migraines but once I finished menopause I would get the aura and no headache which was awesome.

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  • By Ann

    I would be interested to know too if there is such a thing as cluster auras? Also is there a successful medication for auras as the headaches aren’t so severe. It is the debilitation of flashing lights etc.

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  • By Nancy Harris Bonk Moderator

    Hi Ann,

    Thank you for reaching out and being part of our discussion forum! Let me see what information I can give you that may be helpful.

    Typically aura is not part of a cluster headache, although some people have report visual issues, but can be part of a migraine attack. Unfortunately it’s possible to have both at the same time :(.

    Here is information on migraine prevention medications, including migraine attacks without head pain;
    https://migraine.com/blog/migraine-preventives-start/.

    Another thought is to see a true migraine/headache expert. These doctors are different from general neurologists in that they are board certified in headache medicine which is different than being certified in neurology. When you get a moment take a look at this information about how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Let me know what you think,
    Nancy

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  • By DMAN55088

    I have been suffering cluster headaches for 4 years now. I am a unique one in that my headache never goes away. I also suffer tension, sinus, stress and migraine headaches and many times all at once. I have lost my job because of them and am now trying to figure out how to live with no income. I use imatrex and midrin for my headaches. Now that midrin is gone I am worse. What am I to do.

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  • By lightweaver

    O2 is the only thing which helped me.

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  • By Clustersurvivor33

    I sent you a msg get back to me if you would like my clusters just started 2 weeks ago and Ive got a long time tI’ll it’s over I’ve seen many specialists and have ways of dealing with them probably more than most actually know about them. I took all the best info from each dneurologist and know quite a bit

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  • By Clustersurvivor33

    Anyone who wants good info on treatments and helpful tips on dealing with clusters I’ve been getting them for 17 years tried everything I get them for a minimum of 3 months at a time at least once a year

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  • By jerryneiman

    A cluster headache has pain and pattern of attacks. A cluster headache diagnosis depends on your description of the attacks, including your pain, and also on the severity of your headaches, and associated symptoms.There are no special tests to diagnose cluster headaches. The diagnosis is based on the typical symptoms and signs. Investigations are usually done if the diagnosis is unclear in order to rule out other causes.

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  • By wendya2j

    Hi!
    I suffer migraines since I had a traumatic brain injury four years ago. This year my dr diagnosed me with a specific migraine that was different than my usual pattern. It wakes me up around two am, feels like a sharp stabbing through and behind my right eyeball, and the right side of my nose runs. I seem to have started them during the fall and then they stopped for a while, and now they are back. Is this a cluster headache or do you know what this kind is called? I just forget!

    Thanks!

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  • By ashley8888

    Hi! Just looking to see if anyone is taking any daily medications that have been effective. My cluster headaches are kicking my butt and I’m not functioning. Sumatriptan isn’t working and if it does only lasts for about 12 hours.

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  • By Nancy Harris Bonk Moderator

    Hi ashley8888,

    I’m sorry to hear about your new diagnosis. Cluster headache is some of the worst pain known to man. There are a number of groups you may want to reach out to including; http://www.clusterheadaches.com/ and https://chsg.org/welcome-to-chsg/ and https://clusterbusters.org/.

    In the meantime, you may want to investigate oxygen as an abortive treatment, many with cluster headache use it. Here is our information on cluster headache I hope helps; https://migraine.com/?s=cluster+headache&submit=Go.

    I hope this helps,
    Nancy

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  • By kinderj

    I have had a headache that wanes on and off in intensity for the last 5 days. I teach first grade and have missed work yesterday and today and cannot fathom working tomorrow. I feel it in between my eyes and the back of my neck. I feel exhaustion like I have never experienced. Would this be a cluster headache or cluster migraine? I made an appointment with a neurologist since I’ve suffered with migraines since my 20’s and now in my mid 40’s they are worse then ever. I feel scared and alone.

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    • By #purpleproject Moderator

      I’m so sorry you’ve been in such pain, @kinderj. I hope your Neurologist is able to get these migraines under control. Could it be age-related? I’ve heard people that it goes away & it gets worse. Please let us know how things go.
      Kelly, Migraine Team Member

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  • By Nancy Harris Bonk Moderator

    Hi kinderj,

    I’m so sorry you are having extended head pain. You’re not alone – you’ve found a wonderful community that is here to support you in any way we can.

    Good to hear you’re seeking out help from a neurologist. The thing is we really don’t like to see head pain last longer than 72 hours as it can increase our risk of status migrainous and stroke. I would encourage you to call the doctor and see how he can help break this nasty cycle. I’ve typically been given a steroid dose pack or gone in for an infusion.

    If you haven’t keep a detailed migraine diary, you may want to start one. Doing so can help us identify triggers and/or patterns our migraine attacks may have. For more information you can read this article when you’re up to it; https://migraine.com/blog/keeping-migraine-diary-basics/.

    I hope this helps. Will you let me know how you are doing?

    Nancy

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  • By Nancy Harris Bonk Moderator

    Hi again kinderj!

    I forgot to mention as much as I wish I could tell you exactly what’s going on regarding cluster attacks or migraine attacks, only your doctor can do that.

    I can tell you cluster attacks and migraine attacks are two very different beasts. Migraine attacks may come in “clusters” but that doesn’t mean they are cluster headache attacks.

    I hope this helps!
    Nancy

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