TrespassersWill - TW
CH.com Newbie
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Now I know how JFK might have felt.
Posts: 2
Northern Colorado, USA
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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
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