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
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.
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/.
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.
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.
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
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.
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.
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.
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
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
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.
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!
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.
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.
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
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?
Hi, I’ve suffered from migraines since puberty. Always on the left side of my head. They start with diarrhea a couple hours before and followed by blurred vision in my left eye and then nausea and vomiting at the onset. Sleep generally helped the headache. Then about 15 years ago the pattern changed and I started waking up around 3am with the worst migraine ever! Generally I wake up and immediately vomit, then take some ibuprofen and go back to sleep. The headache would then seem to lessen and worsen throughout that day and would be completely gone by around 7pm, when I’d feel great, only to come back the same way at 3am the next morning. This would usually go on for about 4 days with maybe 5-7 days between. I had no aura with this headache either, I would literally feel great when I went to bed, then poof, headache. I never talked to my doctor about these, but I’m sure these were cluster headaches.
In any case, 5 years ago my doctor put me on a medication called Atenolol for my high blood pressure and a week later I realized I hadn’t had any sign of a headache in a whole week. Not even a little. After another week of no headaches and I knew it must be the medication so I researched and low and behold, though not commonly prescribe for it, atenolol has been known to stop migraines. 5 years later it’s still working. I still get the occasional mild headache (1/every 2months)that easily goes away with 2 ibuprofen, and I have gotten a handful of full blown migraines over last 5 years, but it has been life changing and I tell everyone about it. I only wish I had advocated for myself to docs earlier. Please continue searching for a solution, and research off label meds that might help. I had been using imitrex With mixed results and horrible side effects for regular migraines, but nothing seemed to help these headaches that start while I was sleeping, until Atenolol. Good luck to all.
@mand0002, I’m so glad the Atenolol has begun to work for you. It seems that we got through a series of medications before we actually get “granted access” to something successful that eases them even just a little bit. I wish you continued success – kelly, Migraine.com Team Member