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Cluster Headaches

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 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 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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