What a ride; I just got diagnosed yesterday with my CH's and they are absolutely the worst thing ever imaginable to man.  I could just curl up and die after scratching my eyeballs out.

Symptoms: woken up 3 times now from a dead sleep.  I stop and wonder 'why am I awake' and then it starts, the constant ice-pick stabbing in the back of my eyeballs.  The tears that roll without me crying from the pressure in my head, the moaning/groaning and incessant rocking back/forth for ANY relief.  Nothing helps and nothing works!  My peripheral vision swims/dances/waves/rocks/blurs.  I do get nausea though which is not typical of Clusters - not sure what's up with that one.
Started: about 4 weeks ago.  Uncontrollable and constant. 
Medical History: 3 months ago I had a major bunion repair surgery in my left foot.  First 6 weeks were no weight-bearing which meant lying down elevating the foot for fast healing.  And, then onto partial weight-bearing with an aircast thus I have an improper walking gait.  I'm onto full weight-bearing now but still obviously have the improper gait.  This has all affected my back, neck and shoulders.  The doctor at the ER yesterday said that I have all the headaches; tension, migraine and clusters.  Possibly these CH's are due to the fact of this surgery that often people present with these type of symptoms after a major stress change in their life.  It may become Chronic or they may subside after I am up and about after full healing of the foot takes place.
What has helped me: coffee helped during the day.  A shower for 15 - 30 minutes.  Dilaudid at night but not allowed that anymore due to that is for my foot not my headaches.  Yesterday at the ER through the IV line an anti-inflammatory Ketorolac did not help; but what did was a syringe and a half full of morphine, gravol and a prednisone.  So went to my family doctor today as the ER did not give me any medications to go home with only told me to come back for the Oxygen after an attack.  My family doc gave me the abortive pills Sumatriptan and preventatives Amitriptyline - so far an hour after taking the Sumatriptan I have found a little relief but I can tell I will need another one in my 2 hour window.

So after reading this guys, do you have any advice for me?  Any other tips that might help out during an attack or directly after.  I was so scared to fall back asleep after my night attack last time that I only ended up having 2 hours of sleep in total and being a zombie since then.  Last night I slept through the whole night thinking before I fell asleep that I was going to wake up, but it didn't happen - thank god!  So, I am dreading the day it happens again.
Please, any responses will be soo helpful!  Any thoughts and opinions are welcome as well.

Glad you found us. Likely you will be hanging around for some time and so, let's get an organized beginning.
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Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. Follow this chain:    CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Your docs action so far suggest very limited, useful knowledge about treating Cluster. So, if at all possible, locate a headache specialist. This is a far  more complex area of medicine than is generally appreciated and too many of us have wandered from doc to doc trying to find good care.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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Start to educate ourself. Essential knowledge reduces anxiety and allows you to work with your doc in a active mode vs. just following directions.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Print out the PDF file, below. Right now it will mean little to you but, with time, will makes sense. It's a list of the most common meds used to treat Cluster--good tool to guide discussions with our doc.
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Read , read here. But avoid the temptation to start treating yourself until you have established a good relationship with a competent doctor. Too much in the pot doesn't help.

Ouch, hoping these attacks are surgery related and not true CH, but if it is...and it sure sounds like it might be, you need to take charge and be your own best advocate:

Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. As Lance said, it has to be used correctly or you might as well sniff Windex!!! The keys are 100% 02, at a level to support hyper ventilation, started at the first sign of an attack. Obviously driving to the ER won't work because once beasty is established 02 doesn't work well.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You'll see from reading the above link a home 02 set-up is critical to your sanity. Print out the supporting documents above and INSIST on a home set up.

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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!

Glad you found us, let us know how your progress goes.

Joe

Your Life as you knew it is about to change. This isn't an easy change, best of luck. To all as well. Peace

Was the neuro you saw a headache specialist neuro? I ask because being a woman, the knee jerk reaction amongst the older doctors is "It must be migrains because women don't get cluster headaches." The diagnosis criteria from the 80's is almost funny....."CH patients are primarily male, above average height with lionesque features!!!!"

I am not saying he did not make a correct diagnosis, I am certainly not a doctor and am not qualified to diagnose. But I've read way too many horror stories on this board of women being treated as migrainers for years before a competent "Headache Speecilaist neuro"  correctly diagnosed them as CH.

Joe

I've also been left a little confused in what to do abortively.  Topamax for preventative once a day and they did say that although they don't like narcotics but because I have them I can use them once in awhile, so I am to use my percocets for abortive measures?  That is what I am trying right now along with a Ketolorac - didn't work in the ER but I have them here and maybe long term use will finally bring some head swelling down. 
Everyday is the same.  A headache - I hate this already.  It brings me to tears daily, feel like a little girl with no pain tolerance and I thought I had a pretty good tolerance but it turns out I don't.

For someone who can't have sugary drinks, the fructose bothers my stomach (allergy) what can I have for energy drinks?  I've been suffering daily.  I'm trying different things.  Today I took a Sumatriptan tablet upon awakening this morning and all I am is tired with a headache, what am I doing wrong?  June 12 is a long time away?  Anyone any suggestions that I can try until then?  I may go out on a limb today and try an energy drink but I may get a worse headache due to the fructose in it - which scares me.  I have low level 6 Cluster headaches with a constant migraine (I think) or tension - I'm beyond confused already.  I am keeping a headache diary but that seems all over the place and my head feels fuzzy so I don't make sense of anything anymore.

Just a couple of things to chew on. First women have a higher pain threshold than men. Most women who have had both would pick child-birth over kidney stones and kidney stones over cluster headaches. The pain is intense and irrational. You have no need of shame for feeling pain which brings most people to their toes, while banging their head.

Also, you're among friends now. We might not be right there with you, but we certainly understand the pain you're in and the ride you're on, although some of the details may be different. There is a lot of good information here  and there's almost always someone on the site who understands and can respond to a post when you need a lift. Good luck wrestling The Beast.

rep