I am 37 and have has episodic ch for about 20 years and took about 5 years to even diagnose properly. I have 1 headache a day which used to last about 3-4 hours for about 6 weeks at the same time every year for about 15 of those and now seem to get them every three years and  still only get them once a day but now last about5-6 hours. I have been prescribed prednisone and take 60 MG a day and ween off 5mg every 4 days and this years episode has nothing to do with it and remains present. Its very eratic this episode and wonder if its getting weaker as i age cause there is no real answers. Reading other peoples post i feel luckier then them as sounds so much more severe. Just getting it out there and glad to see some sites on here for this as misdiagnosing left me lost for several years as my doctor sent me for physio, acupunture.

Welcome,

Definitely read all of the information there is to offer here. I know there's a ton of it and it might seem daunting, but it is worth it!

There will be much more knowledgeable people coming along to your post soon. I just thought I'd be the first to welcome you to the fold.

Listen to what they have to say, they've really helped me.

Welcome,

I'm very curious to find out what levels of pain you experience in a 5/6 hour attack. Have a look at the kip scale to the left of your screen, it details the levels of pain during an attack. You are indeed very lucky to experience only one hit per day. Read the oxygen section hi lighted in yellow, I can abort an attack within 5-10 mins using a flow rate of 15lpm and a non rebreather mask.

Good luck


Lefty...!

Welcome to the board. A 31 year episodic here and they do seem to have mellowed a little bit with age. Read the oxygen info link on the left hand side of the board. Used correctly it's been an almost miracle abortive for many on the board. I can stop an attack in less then 10 minutes using just oxygen.

As far as medications, prednisone is used 2 ways. For a small percentage of sufferers, a short blast of pred can stop a cycle completely. For the rest of us, it's typically used as a transitional medication while you are waiting for a preventative medication, such as lithium, verapamil or topomax to take effect. Do you have a preventative medication you take while on cycle other then the prednisone? And what are you doing once an attack starts?

Glad you found us, hope we can help you.

Joe

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Welcome to CH.com. Could you please describe one of your headaches, location of the pain and any other symptoms?

The length of your attacks is not typical of CH. There are other headache types that mimic CH and the treatments for them are different than CH.

The average CH attack is from 30min to 3 hours. Longer does happen but usually not regularly.

Good Luck and welcome again,

Don

Would be wise to locate a headache specialist. The compexity of diagnosis plus the multiple combinations of treatments which are available really make it impotant work with someone will skill.
=======

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.  Call 1-800-643-5552; 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.

6. 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.

Skyhawk5 wrote on Feb 9^th, 2010 at 9:54pm:

Welcome to CH.com. Could you please describe one of your headaches, location of the pain and any other symptoms? The length of your attacks is not typical of CH. There are other headache types that mimic CH and the treatments for them are different than CH. The average CH attack is from 30min to 3 hours. Longer does happen but usually not regularly. Good Luck and welcome again, Don

Well the location stems from probablysomewhere in my right shoulder and runs up the back of my head and around to my right eye and makes my eye water profusely, nose runny and if i breathe too deeply it intensifies it. My trick is no movement and very short breathes, I was diagnosed by and Neurologist quite some time ago.  They always only lasted about 2-3 hours then disappeared other then leaving me exhausted but this time theny last about 5-6 then shadow for about another 4-5. The beginning of this cycle was every second night at 2:00 sharp like an alarm clock then went to every 3rd day and now seems like about once a week. Im going on my 4th week Feb 15 and should be going away soon cause they have never lasted longer then 6 weeks. When i started to get them it was like clock work. Every spring same day of the month then they backed off to be about every 3 years or so. In the beginning i was prescribed verapamil and prednisone but the prednisone seemed to settle it and now its effect seems to have diminished?? 

[quote author=5A5D54545C5757380 link=1265694150/2#2 date=1265710012]Welcome,

I'm very curious to find out what levels of pain you experience in a 5/6 hour attack. Have a look at the kip scale to the left of your screen, it details the levels of pain during an attack. You are indeed very lucky to experience only one hit per day. Read the oxygen section hi lighted in yellow, I can abort an attack within 5-10 mins using a flow rate of 15lpm and a non rebreather mask.

Good luck


Lefty...![/quote
Well i getting woken up by nothing then i can feel a shadow and know its coming, then boom its there full force and no way in hell can i sleep. Its like waves of pain a little weaker then full intensity and then i get anxious and pace around and have tryed many things to aleviate it outised of drugs to no avail. pain scale is i would say normally a 7-8 but this time is majority a 7.  Seems weaker but longer. Its more acceptable this time. It seems like verapamil is the drug of choice as prednisone is wreaking havoc on my gut. I have yet to find a real trigger as all the things said dont do it other then alcohol and i gave that stuff up a long time ago.

krs, thank you for the response. Many of those symptoms match CH. My last cycle the prednisone wasn't very helpful to me. Maybe a tolerance?? Oxygen is my best  abortive and last cycle I got the O2pti mask available here and a higher flow regulator. Great stuff....

Other good abortives are Imitrex injections or inhalers (the pills are no good), Zomig inhaler etc. Many have success with slamming energy drinks.

Imitrex doesn't work for me so I have an injection called DHE 45. It's a little more dangerous but is cheaper and my insurance doesn't limit it.

Hope it ends soon,     Don