I've been suffering from cluster headaches for about a year and a half, usually about once per night.  I only recently learned what it was called, through the efforts of my girlfriend.  I've started experiencing them during the middle of the day, which led to her looking into my symptoms.

I'm just absolutely shocked at how my every complaint and symptom, down to my left nostril getting stopped up and my left eye leaking matched up with cluster headaches.  I have a few questions though, and I'm wondering if anyone has felt some of the things I have.

When I get the headaches during the night, I wake up disoriented and usually end up rolling around in agony on my bed, stuffing my face into my pillow and whatnot until I eventually go back to sleep.  Is that normal with them?

Also, ever since it's started, I always feel so exhausted during the day.  I'm literally just always tired.  There are  very rare days where I'll wake up and feel absolutely amazing though, like I was depressed and suddenly I'm not, would this perhaps have anything to do with the headaches?

Last question, I promise, do aspirin actually help?  Whenever I get one of the headaches, I'll usually take about 4 or 5 aspirin, although after reading a bit, I'm not sure if it actually helps.  I'm too afraid to not take them at this point though.

Anyway, I'm really just glad I at least know what my headaches are called.  I was thinking for a while that I had a brain tumor or something.

Hi paperDj,

All the symptoms you describe, except waking up feeling amazing ( for me anyway) are spot on. I wish I had a £ for every night I've writhed in bed, with snot and tears soaking into my pillow and wanting to die.
Asprin will rot your stomach, and will not treat CH. No painkillers will work for CH, not even morphine. So please don't take the risk with your health, or waste your money.

Here's the good news. It's vital to get a proper diagnosis in order to get the right meds. If you doctor is unfamiliar with CH as many of them are, ask him to refer you to a headache specialist. There are many different conditions which have the same symptoms as CH, but they respond to different meds, so you need to know which type of headache you have.

IF it is CH, it is caused by a dilated blood vessel in your brain pressing against the trigeminal nerve. There are abortives which give almost immediate relief. Ask for imitrex (may be called sumatriptan or imigran depending on where in the world you live). There are tablets which take too long to work, and nasal sprays which are a little better, but the auto injections are absolutely fantastic. They are a vasoconstrictor, thus taking pressure off the nerve.They will abort a big one for most people in 5 -7 minutes. The down side is they are expensive, and you can only use 2 per day.

Then there is Oxygen. But, this is important, You need a high flow rate of 15 - 25 litres per minute, and a non-rebreather mask. Get either of those wrong and it won't work. You may hyperventilate but thats harmless and the tingling feeling soon wears off.
High flow oxygen will also act as a vasoconstrictor, and the mask is to stop any "room air" getting in so the oxygen remains pure. I use the oxygen when I'm at home and save my 2 precious injections for when I'm out. I never leave home without them.

There are preventatives too. Verapamil seems to be the most effective. Also check out these boards for posts about vitamin d3. Look for a  post called "123 days pain free".
It's avery long read but well worth the effort.

Of course, if it's one of the other conditions and not CH then the treatment will be different (although the oxygen will work for any), so your first step must be to get that diagnosis, and a scan to confirm that you don't have a brain tumour.

Good luck. Let us know how it all goes.
Maz.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Pain meds don't work for Cluster.

Essential that you get a good medical wok-up and diagnosis. There are numerous disorders which appear to be Cluster but which are not headache disorders. So, if at all possible:

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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As the last sentence implies: self-diagnosis and self-treatment is not wise. We have formal studies which reveal that far too many folks take upwards of five years to get an accurate diagnosis (and, therefore, effective treatment) because they consult dos who lack education/training in complex headache disorders. Why we encourage getting a skilled doc.

Welcome to the board, so glad you found us. The good news, there's absolutely no reason to rock through those hour long headaches, chewing aspirin and hoping your head doesn't explode!!! Get yourself referred to a headache specialist neurologist. Get your diagnosis confirmed and start a treatment regimen. Let us know where you live, maybe someone on the board can refer you to a knowledgeable neuro. An accurate diagnosis is critical as there are some maladies that mimic CH, it's important to eliminate those before you start treatment. While you're doing that, start reading up on this:


Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe

PaperDJ, Sorry to hear about the pet monster attacking your head. As previously suggested, please stop with the aspirin overuse. Seriously! If it seems to help, it is probably just the chewing motion and exertion. Repetitive motions can help to divert attention for a bit. Try ice chips instead, it helps me sometimes when they aren't so bad.

Painkillers aren't really the best choice for regular use. They can help if the dose is high enough to knock you out, but they only help if you take them long before the attack and they only help some people. I don't really recommend them unless your Dr is ok with it and you have a plane flight you can't reschedule or something similar. Also try everything else first.
If I take it too late, the attack will hit and blow the painkillers out of the water. For some reason if the attack hits before I'm drooling, it just doesn't work at all. Maybe a heart rate or adrenaline issue, I don't know.

Good luck, Keep moving forward!