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keorap
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relief at discovering site
« on: Jan 17th, 2006, 2:24pm » |
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i discovered this site two days ago when i was desperately trying to find out more about this horrendous condition.. my name is keo and i"m south african. i'm 28 and have been suffering from CH's since 1999. i'm a doctor and these headaches started when when i was in med school. my GP then thought i had migraines and gave me the wrong treatment,which turned me into an insomniac...!fortunately my neuro was spot on and made yhis diagnosis.. have been a bit down lately..going thru a cycle,started just before Christmas.i have been going for three weeks now and i"m a bit tired of the sleepless nights.i'm constantly tired,and during the day and some nights i have to give my best to patients,when i myself feel like just collapsing and sobbing. my colleagues don't get the point.it's sad that cluster headaches are so misunderstood by the medical fraternity,especially among female patients,as many doctors believe that women don't get clusters.and therefore they possibly think that i'm just a hypochondriac..my husband tries to understand,as he sees me night after night writhing and pacing.during the attacks,i cant even cry as i feel like crying increases the pressure in my head,so i just lie there,hopeless,pacing around,holding my head,waiting for it to subside... ultimately,if u haven't had the headaches,you can't understand the toll that sleepless painful nights take on your physical and emotional health.. the only thing that comforts me is that i know it will pass,then i can worry about it next year again...
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Guiseppi
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Re: relief at discovering site
« Reply #1 on: Jan 17th, 2006, 2:38pm » |
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Well you're not the first doctor to our site, and welcome to a new family! I don't know what's available to you but have you tried oxygen to abort an attack? It's one of the more popular treatments here, I've had tremendous success with it. Other people on the board use a non rebreather mask. I've had great success using a demand regulator and breathing pure oxygen that way. If started at the first hint of pain it completely aborts 90% of my headaches.
Again, welcome to the site. No one here will call you a hypo chondriac or a whiner! We understand. I hope you find some help here.
guiseppi
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keorap
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Re: relief at discovering site
« Reply #2 on: Jan 17th, 2006, 3:01pm » |
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thanks again.. i have used oxygen when the attacks came on at work and it's been fantastic! (except the nurses think u are an absolute attention seeking lunatic when you put on a polymask without "respiratory" distress!!!)but i found that the pain abates only for a short time and then comes back in full swing.. still have to arrange home oxygen.my sin is that in between the cycles i "forget" about my project to arrange the oxygen,but the way things are going now leaves me no choice. my neuro put me on verapamil and it worked initially and stopped. have considered lithium and steroids but a bit concerned side effects. i use Myprodol and aterax during the attacks.(myprodol is a combination of paracetamol,indomethacin and codeine.) it sort of works but i am getting a gastritis from the anti-inflammatories.starting to take an antacid. if it's not a headache at night ,it's epigastric pains by day.i'm a senior doctor where i work,and a lot of junior doctors look up to me for advice,but when it comes to these headaches i become a little girl with no idea....
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Guiseppi
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Re: relief at discovering site
« Reply #3 on: Jan 17th, 2006, 3:06pm » |
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I had the same problem with ha returning after oxygen chased them away. I now take one cafergot, then start the oxygen. The oxygen chases it away and the cafergot seems to keep it away. I am currently on 1200 mg lithium a day as I'm halfway through a cycle. I'm a 46 year old male, weigh about 190 lbs. Lithium has been my preventative of choice for about 10 years and I have pretty good luck with minimal side affects. I've used prednisone, with and without a doctors prrescription. It provides a 100 % block but the side affects are atrocious. Good luck!
Guiseppi
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BarbaraD
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Re: relief at discovering site
« Reply #4 on: Jan 17th, 2006, 9:22pm » |
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Keo,
Welcome to Clusterville. sorry you're here, but glad you found us. I know how it is to find out you're not alone with CH. All of us here have been where you are now and DO understand what you're going thru.
O2 has helped most of us (nothing works for everyone). I also use cafergot as an abortative when I have to. It seems to work longer than the other abortatives for me with less side effects.
I've been on topamax for several years and don't seems to have the side effects that a lot of others experience, but that's just me. It's been the only thing that's helped me as a preventative (I'm chronic).
Melatonin has helped a lot of us at night to get some rest. I take 9-12mg before bedtime and get some sleep (it helps get you thru the REM sleep which seems to be when the CH hits) thus helping with the exhaustion.
Verapamil has worked for many (I can't take it because it lowers my BP too much) and lithium has helped many.
Read the medical literature on the left and then it's trial and error to find out what will work for you. We're all different and we all react different to the meds available.
But when you're here, you're family and someone will be here 24/7 to help you, so anything you need - just ask.
Hugs BD
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MJ
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Re: relief at discovering site
« Reply #5 on: Jan 18th, 2006, 3:07am » |
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Hi Keo welcome.
If anyone understands what you go through it is the people you find here.
Most of us have had to go the same route as you at one time or another to find out more about this condition called cluster headaches.
Allways nice to have a doctor around. I am sure that as your career goes on many in addition to yourself will benefit from your knowledge gained here.
While reading here on CH.com I will reccomend another site to look at. Good hard research has and is being done and radiating out from there for the treatment of CH as well.
http://www.clusterbusters.com/
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MJ
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burnt-toast
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Re: relief at discovering site
« Reply #6 on: Jan 18th, 2006, 10:50am » |
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on Jan 17th, 2006, 2:24pm, keorap wrote:| my colleagues don't get the point.it's sad that cluster headaches are so misunderstood by the medical fraternity,especially among female patients,as many doctors believe that women don't get clusters.and therefore they possibly think that i'm just a hypochondriac..my husband tries to understand,as he sees me night after night writhing and pacing.during the attacks,i cant even cry as i feel like crying increases the pressure in my head,so i just lie there,hopeless,pacing around,holding my head,waiting for it to subside... ultimately,if u haven't had the headaches,you can't understand the toll that sleepless painful nights take on your physical and emotional health.. the only thing that comforts me is that i know it will pass,then i can worry about it next year again... |
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Folks here understand what you're going through. Doctors who lack CH knowledge - big problem. There's a lot of gals here who understand the condition all too well - it's far from being exclusively a male condition.
In the U.S. there's just no money in it - too small a percentage of the population for anyone to focus on it - I'm sure things are no better in the rest of the world.
The sleepless painful nights/physical and emotional health toll is a big concern. CH may not be life threatening but sleep deprivation can lead to physical and emotional problems. Chronics like myself are at a high risk for physiological side effects - let alone the side effects of long term prescription drug use.
Welcome aboard - there is lots of useful information on the site that may help you. I've also added the following links that may be useful.
http://www.emedicinehealth.com/articles/9362-1.asp
http://www.wrongdiagnosis.com/c/cluster_headache/intro.htm
http://www.aafp.org/afp/20050215/717.html
Best Wishes on your journey
Tom
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keorap
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I love YaBB 1G - SP1!
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Re: relief at discovering site
« Reply #7 on: Jan 18th, 2006, 1:17pm » |
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thanks all you guys for respondin!!! i am so uplifted by this special site,your concern and advice!! will check out the other sites provided by some of you,as soon as i'm done cooking dinner..it's 20:00 here.. it"s great to know that someone understands EXACTLY what i go thru at night..the fear to go to bed etc. you'll laugh at this,but i tried to explain the severity of the headaches to my husband,and i told him it felt like a fat pregnant worm was wiggling in my head,trying to give birth!!!! he just smiled... good night all..
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marlinsfan
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Re: relief at discovering site
« Reply #8 on: Jan 18th, 2006, 9:52pm » |
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Hi Keo, welcome to our nuthouse! We have another person from S. Africa here, Jasmyn. She's great and visits a lot. Hook up with her, maybe she can help you with local info.
PF wishes.
Jose
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Beastfodder
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O2 and clusterbusters - naturally
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Re: relief at discovering site
« Reply #9 on: Jan 19th, 2006, 5:13am » |
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One of the good things about CH is the amount of practice you get in finding a solution that works for you.
Oh - and the advice re the above you get from here.
After 8 years practice O2 and clusterbusters have stopped me being a sufferer and there's quite a few here who've arrived at the same prognosis.
Melatonin too works for some - and the threads are very useful to find out more. Traditionally of the triptans used to abort attacks I've heard Frovatriptan offers a longer half life than some and therefore longer relief. I used Maxalt melts for one cycle and had some success, but also had the worst headache I've ever experienced after using it.
Pre CH diagnosis I learnt that using OTC pain killers is really bad, they don't really work and you're already finding out the some nasty side effects.
Best of luck
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O2 and clusterbusters - naturally
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