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Cluster Headache Help and Support >> Getting to Know Ya >> at the end of my teather http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1271171889 Message started by packersunuk on Apr 13th, 2010 at 11:18am |
Title: at the end of my teather Post by packersunuk on Apr 13th, 2010 at 11:18am
Its been 14 months and here we go again,
Hello to all of you my name is Paul and have been suffering with ch for about 8 years with the usual cycle of 2 to 3 months of hell and then a year later it all starts again, I'm currently 3 weeks in and after years of browsing decided to join the family. My usaul cycle is an early evening attack followed by a rude awakening from my sleep two sometimes 3 times a night in a 7-8 hr period and i gotta be up at half 5. For years i was given painkiller after painkiller which 90 percent of the time does nothing, until probably just over 2 years ago i was shown an article in a medical book describing ch and every symptom was bang on but still i got no real treatment and had to simply suck it up, Last December when i felt the shadows starting my doctor recommended acupuncture as he felt it was pressure on the neck causing the pain but hey presto that obviously did not work as they are back seemingly worse then ever, it kinda really annoys me that all the treatments recommended on here have never even been mentioned to me, like many have said before i really don't think standard gp's get it I was wandering what you guys suggest i do next. Thanks for reading Paul |
Title: Re: at the end of my teather Post by Cathi_Pierce on Apr 13th, 2010 at 11:30am
Welcome, Paul, and so sorry you need to be in Clusterville.
Not sure you have found the right Dr as yet, if your Dr is suggesting either otc or prescription meds to manage this beast. There's a saying around here. Simply put, when you're at the end of your rope, tie a knot in it and hang on...not trying to 'blow smoke", but it's soo true! CH will not kill you.......even though you'd wish so at times, Perhaps printing out some info here, about 02, V4rapamil and making another appt with Dr, with some guidance from you he JUST might learn how to treat a Clusterhead! I soo hope this cycle is drawing to an end for you! Post here about your progress, ask questions, whatever you need. This is a wonderful group of people who really care- and UNDERSTAND.....so, PF wishes to you, Cathi |
Title: Re: at the end of my teather Post by BudO on Apr 13th, 2010 at 7:49pm
The advice you'll find in these forums is generally outstanding - and this comes from one who has been helped immensely by the folks here.
First and foremost follow all the advice about finding that special Neurologist who specializes in Chs (as best one can with such a rare medical condition). I was fortunate to find such a physician at the University of Washington Medical Center Headache Center. It's a 110 mile trip for me each way to see my CH Neurologist but I can reach her by phone almost any time. The large teaching hospitals may prove to be a good lead for you. Each of us Clusterheads has symptoms which present differently and a treatment plan needs to be personalized (and modified after the initial treatments have some effect). In general you probably should be on preventive medications such as Verapamil (I also am "forbidden" from using even OTC pain meds with any regularity as they may cause "bounce back" headaches and it may take up to 6 weeks for these meds to clear from the body) Also, a specific plan of action should be in place for the start of a cycle (assuming you have cycles). In my case the start of a new cycle calls for taking a 2nd Verapamil dose daily; starting a Prednisone therapy; using oxygen as the primary/initial headache abortive (with Imitrex injections as an expensive back up); and doubling my nightly Melatonin dose to 20mg to induce sleep. In the 2 semi annual cycles I've had since I started my current treatment plan I still suffer greatly the first 2-3 days/nights but the cycle begins to be disrupted considerably thereafter. It's still a 7-9 week cycle but the frequency and severity of headaches and shadowing is greatly reduced and is responsive to oxygen therapy over 90% of the time. Most important is the education you will receive on this ailment from a knowledgable Neurologist - keeping logs to learn to predict a headache soon to come by the incidence of eye tearing and/or sneezing/ runny nose for example. |
Title: Re: at the end of my teather Post by Skyhawk5 on Apr 13th, 2010 at 9:20pm
Educate yourself about CH, then try to educate the Dr. If he/she won't listen then you need to find a better Dr. Most Dr's have no clue about CH and treatments, the better ones will listen to the patient.
CH is aka 'suicide headaches', try telling the Dr that. Don |
Title: Re: at the end of my teather Post by neuropath on Apr 13th, 2010 at 10:02pm
Hi Paul,
Sorry you had to sign up to the club. You may want to discuss some of the following options with your doctor, which as others have, I recommend is recruited not from the alumni of GPs but from a list of headache specialists or neurologists specifically trained on headaches. A prednisone taper could be one option to stall the beast until your preventative treatment of choice has reached therapeutic levels (in most cases this takes several weeks). Most folks here start at 60-80mg per day and then taper off at 10mg per day or every 2nd day down to zero. Most experience a pain free period during the course of the treatment, yet the pain is likely to set back in once you have tapered down. Consequently, it is important to start your prevent simultaneously with the prednisone taper. On occasions the taper can break a cycle, but it's rare. Prevents of choice here are Verapamil, Topamax and Lithium. A choice to be made with your specialist. All require some time to take effect. Herbal alternatives / supplements used by some are Kudzu and Melatonin, particularly for nighttime hits. There are numerous others you can read about here but also on clusterbuster.com. O2 at flow rates of 15 lpm plus is the abortive of choice by most. Read the "oxygen info" on the left of this page for proper use instructions. Prescription issues can be overcome by a visit to the welding supply shop, regulators are found on ebay. Rule of thumb: higher flow rate = quicker abort. Mobile abort solution most favoured here is Imitrex injections. "Mileage optimisation" info on left tab "imitrex tip". Olanzapine is an equally effective but significantly less expensive alternative if cost/insurance is an issue. Taurine/caffeine energy drinks are favoured as a support for attack abort. When consumed at the very onset of an attack, they can abort or significantly reduce kip level of attack. Other tips include histamine low/free and ph-neutral diet, "water x 3" and regular sleeping patterns to keep the hypothalamus at a steady rhythm. |
Title: Re: at the end of my teather Post by shaggyparasol on Apr 14th, 2010 at 12:57am
Hi Packersunuk! Hmmm, what would I suggest? Well since you already have a diagnosis so you know it is nothing more serious....
Skip the frustrating trip to the doctors that cost too much anyways and: -use O2 as per the recommendations on this website. -liberal use of caffeine and/or energy drinks. -try the kudzu/melatonin cocktail mentioned above (I don't have experience with this, but many say it works). -Check out the Newsweek article noted above and proceed accordingly. That should have as good a result as what anyone else is getting without the frustration. That's just me though, not telling anyone what to do ;)(and a wink it is!) --Shaggy |
Title: Re: at the end of my teather Post by packersunuk on Apr 14th, 2010 at 10:10am
Thanks for taking the time to assit me in my time of need. I have arranged a appointment with my gp and will let you know how it goes down.
Paul |
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