Good evening fellow Clusterheads! I'm TW, definitely one of the new kids on the block but, a 25 year veteran of cluster h/a. For me, my descent into this truly God-forsaken existence began at age 19, about 14 months after moving to Colorado (where I still live) from the east coast, for college. Like so many others, I dragged my feet on seeing a Doctor believing that these headaches were a fluke and, I also didn't want to end up looking like a big "wuss" just because I had a particularly bad headache sometimes - just like 90% of the rest of the world. Needless to say, (or, maybe more accurately, predictably...) my ego collapsed under the weight of the cluster pain at about 2 weeks. After seeing the University's doctors, I was immediately referred to a local neurologist. I went in to that appointment certain that a brain tumor diagnosis was in my immediate future - it had to be that. Using all my powers of deduction and reason (which at 19, you're just chock full of the stuff) over the previous several weeks, I had quite simply determined that only a brain tumor would be capable of inflicting that head-exploding, thoroughly dehumanizing, level of pain. Obviously, I was wrong. However, I have from time-to-time remarked to people that I sometimes wished that the CH's were caused by a tumor because then, the medical profession could likely do something far more effective to alleviate the pain and, all the other really "special" side-effects that accompany our condition.

In the good 'ol days, my CH's generally popped-up in late August, and quit in early November, (episodic) typically enduring 3x daily of varying degrees of intensity. This was my pattern from 1983-1995. From 1996 to today, I have been experiencing CH's 3x daily. And, over the intervening years, I've seen 7 neurologists, 2 chiropractors, 2 massueses, had all 4 wisdom teeth removed (on the same day, naively thinking it would help/cure the CH's) been given multiple injections of both DHE and Lidocaine, self-administered several Imitrex injections and, taken a list of medications and "cocktails" as long as a giraffes neck...without success. In this regard, I realize I have way too much company and, I am truly sorry that is the  case.

Yet, frustrated as we are that the medical community has not been able to find a "magic bullet" for all of us, we have (rather heroically, I'd say) devoted a lot of effort, trial-and-error, to ideas thatwe think may give us some level of relief. In my own case, I have found something that has either knocked down the CH intensity or, ended it completely - about 60% of the time. BUT it is ABSOLUTELY IMPERITIVE that you think long and hard about this AND quite possibly talk with your doctor about this BEFORE doing anything! THIS IS A VERY, VERY AGGRESSIVE REGIMIN WITH WHICH TO "ATTACK" AN OCCURING OR, ONCOMING CLUSTER HEADACHE, ONLY! Please also note: I am NOT a doctor, I don't play one on TV, nor did I sleep at a Holiday Inn Express last night!

The "Protocol" : When I know I'm starting to get a CH, or, when I wake up with a CH, I take 4 Sudafed Maximum Strength Nasal Decongestant tablets (30mg. each), 5 Aspirin, and if it's a real JFK CH, I'll take 3 Mepergan Fortis (prescription pain med.) about 30 minutes after the Sudafed and Aspirin, if I'm not feeling any signs of a let-up.
The Important Points : Owing to some not-so-positive creative chemistry as relates to unexpected uses of Sudafed, it can be kind of a pain in the butt to buy. Note that there are now 2 non-drowsy formulations - you are interested in the original Sudafed that has Pseudoephedrine HCL. (Red and white box) Here in Colorado, we have to show our ID's to buy it, and the state keeps track of purchasers names, etc. This OTC drug is a powerful vasoconstrictor in its own right, and you would be taking a higher than manufacturers recommended dose. If you have ANY heart issues, have had a stroke, TIA, or any other health concerns, talk to your doctor first. Men should additionally note that this dosage can cause transient swelling of the prostate. Other side effects could include an upward spike in blood pressure and difficulty falling asleep. The ephedrine in Sudafed is regarded as being a powerful stimulant.

Then, the aspirin. Probably don't require much explanation here. Can be very hard on the stomach, particularly if taken on an empty stomach - so, try not to. Aspirin, if taken in very large doses, over long periods of time, can cause serious hearing problems and/or/loss.

The Prescription Med: Mepergan Fortis is a very strong pain med that has helped give me some relief over the years. It is very similar to Demerol w/Phenergan. The side effects here are two-fold. First, the stuff can help your CH but, it may also make you very, very sleepy. The sleepiness could then  bring about a nap, and you doubtless know all-too-well what that could mean. Secondly, taken for long periods of time, as is the case with myself, the effectiveness begins to lessen as the body becomes more adapted to the drug. Thus, the dosages start to get escalated. Finding another means to attack the CH was important to me because I didn't want to have only one "gun" in my holster -especially not one where the bullets were blanks. Being able to combine these 3 different elements seems to be working pretty well for me...at the moment.  

If you want to try this, please be very, very careful. Study any and all risks that could even remotely be threat to your well-being before trying this. If you do try it and, get some good results, when you can, try cutting back on the meds a little at a time - the idea being, to find out what the minimum doseage for you is, while still being effective. You will also likely get the better results from this the earlier you recognize the CH coming on and gulp down the meds. If you decide to get a prescription pain med as a backup, watch-out for "bounce-back"; your CH storming back with a vengeance about 4 hours after you got rid of it, because your brain just doesn't like how much pain med you took. Mepergan Fortis has been known to CAUSE a CH if taken during the absence of a CH!

OK...I've run on FAR TOO LONG, so I'll quit and say good night! All good wishes to everyone 'til we visit again.

TW

Your experience of years before Dx is all too common. Unfortunately, the protocol which you have outlined so nicely is NOT main line treatment for CH.

Would strongly consider that you look over this material which lists current practice; then print and discuss the Rozen article with you doc; AND, based on that discussion, consider whether you are with a doc who understands complex headache disorders. (Our experience is that too many neuros are not competent with CH.)

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

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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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(link here to get the complete article.)

 
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 best overview articles I've seen. Suggest printing the full length article 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]

I'm not a ch'er, but your post does concern me.  Demerol/mepergan/meperdine (which is generic for demerol) is the ONLY pain med I can take, so I know all about the drug itself.  From what I'm reading on your posts, you're taking fairly high doses of a narcotic drug, which is extremely addictive, on a regular basis. 

I didn't see any mention of oxygen as an abortive.

'darlin

Welcome to the nuthouse, even if you were a bit tardy in getting to us!

Bob has given you some excellent reading. There are some very effective treatments for CH now. Most of us episodics, (People like you and me that cycle on and off of CH, vs. the chronics who don't get our remision times), find we get the best results from a 2 pronged approach.

1:When the headaches start up, you need to get on a preventative medication. That's something you take daily while on cycle to reduce both the intensity and the frequency of your attacks. I use lithium, at 1200 mg a day, other popular first line prevents are topomax and verapamil. All high horsepower meds that need the monitoring of a doc to take.


2: a headache starts, now you need a good abortive medication. Your first line abortive should be pure oxygen. None of the addicting side effects of narcotics, doesn't beat up your body like many of the OTC's, I can abort an attack, that is be completely pain free, in less then 10 minutes using just oxygen. You'll hear it preached a lot as it's been a miracle fix for so many of us.

You have much reading to do, I'm so glad you found us, let's see if we can help you and your doc direct you to an effective treatment program!

Guiseppi