Hello, everyone.
I've been having cluster headaches since Sept 2013. Since then, they have been irregular and mostly tolerable. Most of the time, they would pop up at home and it would be mild enough so that I would take a nap. Usually by the time I'd wake up, it would be gone. Two days ago, December 22, I got a headache during my lunch. I was still in school. I went to my next period, study hall in the library. The headache got worse, easily the worst I had in a long time. But I couldn't do anything about it. I paced a little, went to the bathroom, and even went to the corner to rock back and forth. I cried into my sweatshirt a little. My bus ride home was agonizing, but I made it home.
I tried napping and drank as much water as I could stomach. I expected that I would be fine the next morning.
Well, no.
Nothing ever got as bad as when it first started ( I give it 7, pushing 8) But it's still irritating. I've lost hours just trying to deal with it. It's been over 48 hours and it still hasn't left. Right now, I'd give it 1-2, but again, it's annoying.
I don't have much reason to post this here, especially since I don't expect to post here often; my headaches have been few and far. I guess I want some tips or guidance.
Has anyone else had a headache last for DAYS? I had never gotten over an hour before.

who diagnosed you as i can assure you sleeping with cluster headaches is impossible,that i can assure you of.

tangerinearmy is right. I've never heard of anyone napping while having a cluster attack. That is more of a migraine headache trait. Being in pain for many hours (or days) also sound like migraines.
On the left side of your screen is a button 'cluster quiz'. Please take the quiz and let us know your results.

Hi and welcome

It's also possible that you've CH plus another headache type, often CH plus migraine but it can be other ones too.

From the symptoms you describe, some like the rocking and pacing sound typical CH but others, like the benefit from going to sleep don't. Are you working with a headache specialist with experience dealing with CH and other complex headache types?

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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Cluster is not a condition for self-diagnosis and self-treatment. If at all possible, working with a headache specialist is needing, avoiding regular neurologists unles you can confirmthat they have good training and experience with complelx headache disorders.
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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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It's not unusual for new Cluster folks to have periods of changing symptoms--sometimes months to a year or more in duration. So your reported changes are not unusual.

Just don't fall into the snare of trying to treat yourself!

I hate to admit that I never went to a specialist, mostly because my self-diagnosis felt spot on. When they first started, I went to my mom about it because it was at its worst. But they've been far and few so I haven't bothered.
I'm fairly positive I have CH because:

• I'm only sometimes able to sleep it off; I know it's weird but sometimes it's just mild enough for me to sleep it off. But it has woken me up from sleep (that's how it first started.
  
  • 
    It feels exactly how it's described: like I'm being stabbed in the eye by something hot and sharp
    
  
  
  • It goes from unbearable to nothing in just minutes.
    
  
  
  • It's not happening now, but in the past my nose will go stuffy on the side of my head that hurts
    
  
  
  • Pain meds have zero effect
    
  
  
  • My eyelid is droopy
    
  
  
  My mom will call my doctor tomorrow for an appointment.
  I looked up migraine symptoms and from what I can tell it's definitely not what I'm having now.

The diagnostic criteria for CH can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Quote:

A. At least 5 attacks fulfilling criteria B-D B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated C. Headache is accompanied by at least one of the following:     ipsilateral conjunctival injection and/or lacrimation     ipsilateral nasal congestion and/or rhinorrhoea     ipsilateral eyelid oedema     ipsilateral forehead and facial sweating     ipsilateral miosis and/or ptosis     a sense of restlessness or agitation D. Attacks have a frequency from one every other day to 8 per day E. Not attributed to another disorder

Whilst it is relatively straightforward to see if points A to D match your symptoms, the really tough part is ruling out all other possible causes (point E). The multi-day duration really doesn't seem to match B too well.

If you look through the IHS site I linked above you'll see many, many headache types plus there are also many other non-headache causes that can result in the same symptoms. This is why we strongly advise everyone to work with a headache specialist with the skills and experience required to give an accurate diagnosis.

Getting a good, accurate diagnosis is essential to getting the correct treatment. What works for one headache type need not work for a different one.

This is a major reason that we need specialists!


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

the absolute mildest part of a weak kip 1or 2 (ie the beginning)will wake you up from a deep deep sleep im telling you right here and now you cant sleep a cluster off.