I am in mid cycle and tried the melatonin last night and had a pf night! Thanks so much for the information here! I'm in a rural area with no local specialists, and i also travel back and forth to the UK. I am female and we all know that females dont have ch (LMAO)thing is, ive been tormented with the beast for 20+ yrs.(yea, try getting that diagnosis 20 yrs ago)  So every 3 yrs i go through this and wait for an appointment which is always months down the road.  In 3 months, I won't need a specialist. So I generally see the gp. In the past, i've been on propranolol & daypro (which is useless). 3 years ago was on topamax and midrin with imitrex.(have used pens, syringes, tablets and nasal spray). The trex does help, but at the time i was taking a lot of it.  Now again, the beast is back, and my insurance says no to trex and topamax. Also says no to zomig. (i have a sneaking suspecion a few trips to the er will change that)  Dr wants another mri, and im leaving for the uk in 3 weeks, and will be there for 9 weeks so im really trying to find some relief fast so i know i can stock up before departing. I know that melatonin is not avail there without script. 
Anyway..again...THANKS so much for the info about the melatonin. i didn't sleep thru the night, but it was pf and for that i am thankful.

I understand that your message is a general "hello" type--but I'm left with a feeling that your doc doesn't have you on a coherent, integrated treatment program.

Melatonin is helpful for some, and I'm glad you have had a good experience, but I wonder if you have ever considered Verapamil for a long term prevention? The track record for effectiveness and safety is good, with medical supervision, and, generally, gives more consistent results.
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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).

I have yet another appointment today and i am asking very precisly for verapamil.  In this area, it's still a lot of the aww..you have a headache huh? lol Thats about the time im willing to grab handful of crotch and ask..awww..your testicles are a little uncomfortable huh? all joking aside, it seems very difficult to get some dr's to understand that you really need some help NOW and by mid cycle, willing to do about anything to get that. To answer your question, no.  The dr does not have me on a coherent anything.  Propranolol is their answer and again..it does not work for me. This is the 5th dr. 

That you are being given Propranolol indicates your docs are not in touch. This was used for Cluster 20-30 years ago but it's a migraine med and has no place for us.

You have the option of finding a headache specialist (NOT just any neurologist!!) OR, if you are stuck where you are, then trying to educate your doc in effective treatments. Many of us, being blessed with a doc who is open to receiving, will accept the MEDICAL literature we can supply you. Couple of items to try:

 
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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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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IF he gives you Verap, also give him this. DON'T let this frighten you away from it; this is an uncommon side effect but you and doc need to be aware....
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Source: American Academy of Neurology
Date: August 13, 2007
More on: Headache Research, Headaches, Pharmacology, Heart Disease, Diseases and Conditions, Vioxx

Drug For Cluster Headaches May Cause Heart Problems
Science Daily — A drug increasingly used to prevent cluster headaches can cause heart problems, according to a study published in the August 14, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology. Those taking the drug verapamil for cluster headaches should be closely monitored with frequent electrocardiograms (EKGs) for potential development of irregular heartbeats.

Cluster headache is a rare, severe form of headache that is more common in men. The attacks usually occur in cyclical patterns, with frequent attacks over weeks or months generally followed by a period of remission when the headaches stop.

"The benefit of taking verapamil to alleviate the devastating pain of cluster headaches has to be balanced against the risk of causing a heart abnormality that could progress into a more serious problem," said study author Peter Goadsby, MD, PhD, DSc, of the National Hospital for Neurology and Neurosurgery in Queen Square, London, UK, and the University of California, San Francisco and a member of the American Academy of Neurology.

The study involved 108 people with an average age of 44. The participants started taking verapamil and then had an EKG and an increase in the dosage of the drug every two weeks until the headaches were stopped or they started having side effects.

A total of 21 patients, or 19 percent, had problems with the electrical activity of the heart, or irregular heartbeats, while taking the drug. Most of the cases were not considered serious; however, one person required a permanent pacemaker due to the problem. A total of 37 percent of the participants had slower than normal heart rates while on the drug, but the condition was severe enough to warrant stopping the use of the drug in only four cases.

Goadsby noted that 217 people taking the drug were initially supposed to take part in the study, but 42 percent of them did not have the EKGs done to monitor their heart activity. "Many of them said either they or their local services were reluctant to undertake such frequent tests, or they were not aware of the need for the heart monitoring," he said. "Since this drug is relatively new for use in cluster headaches, it's possible that some health care providers are not aware of the problems that can come with its use."

Note: This story has been adapted from a news release issued by American Academy of Neurology.
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And, there are two forms of Verap. Follow this recommendation for better results.

SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.








 

I think it is time for a new doc.  Just like jeans, keep trying them on till one is a good fit for you!  Works with you and makes you feel good.  ;)

Keep your head up!

Angela

Thanks to all.  another new dr today and i believe hes going to be with the program..im now on the verapamil. the only down side i see at this point is i have low bp already so we will have to monitor that.  he seems quite content with the idea that i may be moving on to the o2 next. it was a suggestion i brought up today and he told me he's heard good results about the o2. also new script of trex and new script of midrin. i might make it yet!!!

What awesome news Lacey!!!  You go GIRL!!

Tell me about your trex.  Did you get the pills, shot, nasal?  Be sure to follow the tip on the side menu, a full dose of 6mg can be "oh-so-not-good".  Rebounds to follow, you are safely limited at a total of 12mg in a 24 hr period, and then oops here comes headache #3 for the day.
And your V.  I have low BP too.

Angela

The trex is in prefilled injection syringes, happily not the auto pen. I specifically have gotten these like this before because the needles seem smaller to me.  When i asked for them in the same way..dr  seems to always comply. Therefore, i just mark before dosing. i was very stupid when i first got trex yrs ago and was taking full doses and almost guaranteed to be sick feeling for a while then to have rebound headaches. Have had pills and nasal in past..BLAH!!!  the v at the moment is 120 twice a day? im seeing that most start at 240 once a day..and unless hes just wanting to see what my bp does, i have no idea y hes doing it this way.  (my bp was 92/60 yesterday b4 meds) Also, the beast returned this am at 3:45 and he was pissed off.  was pf for 26hrs and he was not happy about that.  awoke at a k8 on the rise.  3mg trex, chew a midrin and wash down with 2x 5 hr energy drinks, finally worked down to heavy shadows around 4:45. UGH!! i hate these cycles

Several years ago ( long before I found this site and the Imitex tip), I had a standing script at the Dallas VA Hospital for 8 stat dose kits or 16 injections a month. I just mailed in the script renewal every month and the kits came in the mail.  One month  I opened the package and found 16 6ml vials of Imitrex and a package of syringes!  Having a definate aversion to needles anyway, I immediately took the vials back to the pharmacy and got them to correct their error....lol....

Since finding this site and the Trex tip I have tried to no avail to convince them to change the script to the vials.....of course!!

I too have low bp and when I was initially given the V Rx in 94 my doc actually started me out on 60mg twice daily and stepped it up by 60mg until I reached 240mg twice daily.  Although I see a lot of people post who have found success with V as a preventative, I never really saw a noticeable difference in the frequency, intensity, or length of my cycles.  I did however continue to take it until the script ran out in 2006, a few months after a cycle had ended.  I then enjoyed a PF remission period of over 3 years until the beast reared its ugly head this past August.

I elected not to go back on V and just see what O2 therapy would do for me.  I'm happy to say that I only used 7 injections from my stash of out of date Trex during the course of a 3 month cycle.  All the other hits were knocked out with in 10 mins on O2 with a non rebreather mask at 15 lpm.  Other than the normal mental and physical exhaustion from the sleep deprivation, I would have to say that the O2 therapy made this the easiest cycle to endure in my 25 year history with CH!

Dallas Denny

Lacey,
You probably have seen this elsewhere already, but many of us find that combining lithium with the verapamil works better as a preventatative.