Hi
Well I hope that I am not wasteing anyones time.  More times then not I have been told I am female and 32 and that I can't have CH.  I have had numerous diagnosis as far as these so called head pains are concerned that I laugh when given a new diagnosis.  I have read through the meds that are common here on this sight and saddly I have maxed each medication out. My list is a mile long and finally one day I said enough medication piling so I discontinued them all so Neurologists could start fresh.  I have been to Mayo not to mention 5 Neurologists thus far.  I have also had sinus surgery, and they have tried to put me on a CPAP for sleep apnea.  I to all the Dr.'s dislike can't use the machine for the forced air in my sinuses increase the horrific pain in my head. I cry in my sleep at night and my day lately is full of off and on pain the weather is a big issue for me.  I work in the hospital and find that certain odors used with cleaning solutions cause me to go 2-10 in no time at all and a trip to the ER is inevitable.  Saddly I find that this only causes more issues for me because Dr.'s are so confused that they can't wait to get me out and hope that I don't return.  Not that I am a bad patient as far as a nurse is concerned but that they are at a loss.  My symptoms sound close to some of the testimonies I have read except for the eye watering red and blood shot.  I do tear a little and my sinuses stuff up on that side.  I do have one side at a time hurt but fail to keep it consistant to one side its like the stabbing,mind stoping pain has a mind of its own.  " Hummmmm today I will hit right here and bam...."  Right side, left side front sometimes back.  Lengths of time vary some short some way to long.  It is stabbing like a hot pocker that once in place it burns somewhat more and then lets up only to start over again.  Once all is over I feel like a truck run over me and I am exhausted.  Some answer to Imitrex some say  ;D.....  I know that Pain pills aren't the way to go but wow to even have the slightest relief its all I have got.    I know that others probably have it worse and I sympahize for you all...I may not belong because my headaches aren't the same but just the same without an answer I am lost just the same.  HELP.  If all else fails thanks for listening to a fellow headache suffer I needed to let it out...Pain free wishes all....

O.K., medical person: time for a good history!

List of meds used; dosing; duration of use; effects. Seeing a headache doc now? One available?
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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]
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hi Kimmer, may have missed it, but I saw no mention of trying High Flow o2.

Have you read the oxygen info tab on the left?

To make it easier on us please try and use paragraphs.

All the best ,Iddy :)

KimberH  I remember you.

          

Hello again yes some of you know me as KimberH.  I left the sight for awhile thinking since my diagnosis isn't CH that I didn't belong but saddly I have no one besides you that know best of what unrelieved head pain is.

Medications used in the past:  Indomethicin 300mg/ day
                                          Dilantin 300mg
                                          Amitryptaline 25mg
                                          Neurontin 300 mg&
                                          DHE
                                          O2 high flow
                                          Prednisone/solumedrol in
                                            Hospital
                                          Topamax
                                          Ralpax
                                          Verapamil
                                           Imitrex 3-6 mg
                                           Lidocaine basal skull inj.
                                           Botox inj (Mayo clinic)

Sorry I have taken myself off everything on this list because Dr. didn't know what to take away or what to add to....I don't even know if I have them all.

I am currently on Triliptal 600mg twice a day and Propanolol 80mg & imitrex.

Some natural attempts like accupuncture, Chiropracter, Herbal supplements, heat (which helps much more then Ice).

My triggers are smoke, peppermint, some cleaning solutions like bleach, and Hospital cleansers.  pressure changes with the weather.  The wind blowing on my hair the is cold  hurts.

I am currently not with a headache specialist but am seeing a Neurologist.

Symptoms: Sharp head pain burning and repeating
                Left at one time Right another time
                Sinus congestion
                Some tearing on that side
                30-45min
                wakes me sometimes at night
                Hard to fall asleep
                Exhausted afterwords
Ok I am not sure If this helps but thanks for trying.... :-/



                                          

Some of the meds you have tried "taste" like a doc trying SOMETHING that works vs. someone who is sure you have Cluster. My first concern would be to find a headache specialist who has deep experience/training in working with complex headache disorders. Many neurologists simply do not have the skills needed even as we see them as the logical discipline to use. So, if you have the option:

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.
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Propanolol is an old migraine med which has no current use with cluster. Most docs will be workng from this list of current therapies:

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

Dosing of Verapamil is critical. Many docs underdose. This protocol has gained wide acceptance.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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If Imitrex INJECTION isn't giving relief, you might ask for a sample and try this one. Has gained some acceptance for many of us.

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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It's an outside possibility that if standard Cluster meds don't work consistently for you this is signaling that you have a cluster-LIKE headache but not a PRIMARY case of CH. There are a variety of conditions which can mimic CH and it takes a sharp doc to work thru this possibility.

But finding a good  specialist is the essential first step....