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Title: Reign in Pain Post by Ride_the_Lightning on Jun 26th, 2003, 9:22am Greetings and salutations people....My name is tarek, i am half lebanese and half dutch and i would like to share my cluster nightmare with you.... I had my first attack a couple of years back...the pain, concentrated around my molars on the left side of my face made me think my wisdom tooth was causing it...had that removed, pain persisted...after the removal of my tooth, i thought it was all over for me, the attacks where getting worse, i lost my job due to teh fact that i couldntr make to work sometimes and soince then havce been a regular suffere ...i decided not to write down when iw as having an attack and not to be a slave to the headache, so basicaly my decision was to put up with it when it happened andthen forghet that i was a suffere the rest oif the time, this has lead to me not being able to tell he doctor how regularly the attacks were happening...i satill dont keep count, but i do know that i have them most of the time...any situtaion any atmosphere anyt surroundning, when they come they come and nothing can stop them... my question to you people is...does smoking pot cause these headaches? i also use drugs very rarely, is there any advice against that? alcohol is definite trigger for me, but i do have times when i can drink adn drink without a headache...most oif the time it does trigger it though help me as i dontr know anythign but wha the doctor has told me i managed to get imigrane from a friend who used to sufferand they work, im havingh a hard time convincing trhe doc to prescribe them help me |
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Title: Re: Reign in Pain Post by KingOfPain on Jun 26th, 2003, 9:31am Hello & welcome Ride_the_Lightning. So sorry you suffer from CH, hope it gets better soon. As far as your other questions & issues, I will leave that/those to the other folks here. No experience in what you speak of so can't answer them for you. Good luck & stick around, lots of good information & great people here. KingOfPain |
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Title: Re: Reign in Pain Post by Ride_the_Lightning on Jun 26th, 2003, 9:41am thans for the reply King of Pain i am sittign at work and sweating is oozing from what seems to be my lacerating skull, my brain feels like it is being squezed out of my eye socket and there are a thousand tiny gnomes in my ear swinging on the vein.....i must say that smoking weed has helped me put up with the pain a bit..NOTE: WHERE I LIVE SMOKING POT IS LEGAL< MOST POBABLY IF YOU cHOSE THE SAME METHOd YOU WILL BE DOING SOMETHING ILLEGAL.. |
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Title: Re: Reign in Pain Post by Ree on Jun 26th, 2003, 9:53am Welcome Tarek Nice to meet you, but not in good circumstances... sorry you have to suffer with such a condition... Your story sounds familiar... there are CHers here that have had their teeth pulled just because they think that is where the pain originates... about the pot thing... Dave doesnt smoke it so we wouldnt know... about the illegal drug thing... There are quite a few but not all sufferers that have past drug abuse (cocaine) pasts..... I have always wondered if this was a common link or a cause of hypothalumus damage. That is just my opinion and I'm sure someone will misread this and think I am accusing people >>>>>>>>I AM NOT>>> We in our family(my personal family) dont use illegal drugs.......... so we cant help you there... Welcome and take care of yourself... remember anything you take without the advise of a doctor is your own responsibility... Ree |
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Title: Re: Reign in Pain Post by brain_cramps on Jun 26th, 2003, 9:55am Tarek: Glad you found us, sorry you had to look. Firstly, start a headache 'diary'. Don't consider this as being a slave to the headache. Think of it as the first step in fighting the headache. It is very important and will help your doctor (and neurologist) in diagnosing your problem. Record the time, duration and frequency of the headaches. Since the headaches started a couple of years ago, have they been pretty constant or has there been pain-free periods? Do they wake you up at night or are you able to sleep through the pain? Try to determine if you have any triggers other than alcohol. I would avoid alcohol, as it is a trigger for most episodic sufferers. Pot is also a trigger for me and I avoid it while in cycle. Read, read, read, and then read some more. There is a massive amount of information here. Ask any questions you want. There is always someone here willing to try and help. Try to get your doctor to refer you to a neurologist. That way you can rule out other sources of the pain. Good luck and PFDAN, grant |
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Title: Re: Reign in Pain Post by Ride_the_Lightning on Jun 26th, 2003, 10:11am hey guys, thanks for the response Just to be clear, i did go to a neurologist, she diagnosed me with cluster, but never made it clear if i was episodic or chronic...i do however notice that my headaches are random... I avoid alcohol most of the time, and as for illegal drugs( being the heavy ones, coke and so on) i use them on a very rare basis, so i think that is not really a major issue...i was wondeirng more about soking weed....at some points it feels like it is helping the pain and other times it mnake sit worse...i have noticed however, that when i dont smoke pot ofr a week my headaches are more "clear "and the pain is more defined...its hard to explain.....i am just so glad i found you guys, and regardless of my pot habit, i want you guys to take me seriosuly and not as some druggie, i mentionned the drugs in case they had anything to do directly with the headaches...i really feel happy to see repsoses from people, my third post and already i feel like i have a secodn family cheers |
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Title: Re: Reign in Pain Post by ijunG4 on Jun 26th, 2003, 10:12am I, for one, have never used any type of recreational drug--illegal or not--in my entire life. I am also a non-smoker. As for alcohol, I only consume limited quantities off-cycle, although before getting CH, I was hyper-sensitive to alcohol even when small amounts were only present in cooking (not even drinks). I've had episodic CH for 18 years. I don't know, maybe what is typically considered "normal" level of alcohol was too much in my case and destroyed my hypothalamus... |
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Title: Re: Reign in Pain Post by BillyJ. on Jun 26th, 2003, 10:28am WELCOME ABOARD! 1-check out this thread http://www.clusterheadaches.com/wwwboard/index.html 2-I see from your post that you live in Amsterdam,thats a clusterheads dream. Use the search button at the top of the page and type "shrooms" and start reading! shrooms have had the highest success rate as a preventative. 3.Verapamil is also a very effective preventative for many of us. 4-O2-Oxygen-http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm very effective for most CHers. 5-Sorry you had to join us but glad you found us.you won't find a doctor or group anywhere with more knowledge than you will find here. Wishing you pain free times, BillyJ |
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Title: Re: Reign in Pain Post by Ree on Jun 26th, 2003, 11:06am Billy J you are one great supporter as well as a sufferer... great advice...........ree |
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Title: Re: Reign in Pain Post by oringkid on Jun 26th, 2003, 12:16pm Welcome! Pot can be a trigger for me, but not as bad as alcohol. Sometimes it acts more like cigarettes and seems to escalate the pain and cause the attack to be over more quickly. Some say it works to ease the pain for them. Alcohol is a definite trigger for me. BUT, only in cycle and what it does is trigger either an "unscheduled" attack, or brings on a "scheduled" attack earlier. In the beginning of an episode, I will sometimes use it to manipulate the timing of my headaches so that I can get uninterrupted sleep. Once I hit peak though, it's a free for all and I just avoid the alcohol and any other possible antagonists. PFDAN to you! Sherry |
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Title: Re: Reign in Pain Post by Big_Dan on Jun 26th, 2003, 12:45pm ... Hey, Ride... sorry you had to find us, but you couldn't have found better... ... sorry you're having ch so young, it sucks, I know... the worst part about it is thinking that you're going to have to put up for it for the rest of your days... but just keep hope alive for a cure... -Big Dan ... and one last thing... the stronger the alchohol (i.e. whiskey) in my experience, makes the pain of the headache far greater, and you'll have far more headaches in a given day/night.... like 4 or 5 during sleeping hours... and they tend to last 3 or 4 times longer.... so stay away from it.... 'nuff said.. |
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Title: Re: Reign in Pain Post by don on Jun 27th, 2003, 6:27am I have read a lot of posts asking the same question about smoking dope. In probably 99% of the posts of people who have tried it they have reported negative affects. Trigger. There has only been one illicit drug that has brought me any relief (not shrooms) however, it was and is highly addictive and the myriad of other problems that were produced were not worth its use for CH. All other illicit drugs were a trigger. |
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Title: Re: Reign in Pain Post by Ride_the_Lightning on Jun 27th, 2003, 7:25am TEXT thanks for all the responses today i did a little experiment, i didnt smoke pot(yes i smoke regularly, but i am not a loser, i have a job and everything), and thought lets see what happens, here i am at work, pot-less...headaches are much more defined, much more edgy and the pain is much less bearable..my conclusion is that when u think pot is being a trigger, actualy its the headache happening anyway, but the pot is sort of dimming it all....i know lots of people will not agree with that, but hey i dont drink alcohgol, which i think is worse in general.... i notice when i take an extasy pill, i never feel the headache during the effetc of the drug and wont get a headache for a few days after that , same goes for coke, unless i am in the middle of a cluster and then i will get a headache a few dasy later, but in general i have noticed that drugs, even though they are not good for your body in general, and might be part of the reasoni am getting the headaches, i noticed that drugs are good against the pain, obviously i am not recommending it to anyone...drugs are bad for you.....also fresh air seems to offer me some relief...what i dont get is that i get random attacks and i never seem to see a particualr poattern..thenagain i never keep record of my headaches.. another thing which i see makes me differ from other people is that i have only ever had three attacks during my whole cluster life which took place at night and woke me up... could it be that my pot habit is making my headaches irreguar and getting the beast too stoned to stick to a schedule? as for the shroom thing, sounds like a great treatmenet to go through, just cant seem to think it would be very apprecited at work, i work as a sales rep so me talking about how lovely trees are to my customers wouldnt go down verywell lolTEXT |
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Title: Re: Reign in SPain Post by rumplestiltskin on Jun 27th, 2003, 8:23am I smoked for years heavily prior to CH. Illegality and jail terms made me quit. Years later when I started CH I was given some pot. I tried it during a CH and hated it. Fuck this...says I ...since it didn't stop or lessen the pain...who wants to waste bein stoned while havin a headache... good grief den |
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Title: Re: Reign in Pain Post by Ride_the_Lightning on Jun 27th, 2003, 8:46am it might be a waste when pot is illegal and difficult to get, here ou csan get it in any coffeshop and in good quantities, so actualy its sort of a pain dimmer more than a smoke...but when i am not in headache mode, i enjoy it |
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Title: Re: Reign in Pain Post by Jayne on Jun 27th, 2003, 10:38am He Ride the lightning.. when shrooms were mentioned...they are not telling you to be constantly high on the stuff.... If you take some over weekend when you are not working..you might find releif as many have on this board. If it doesn't work the first time try it again the following weekend. I know of a good friend who has kept his headaches away for about 5 years. He doses maybe 4-5 times a year on Shroom. One year he couldn't get any and his headaches returned..so it obviously helped him. Also VERAPAMIL!!!!!!!! That is the prescribed drug that has helped the MAJORITY on this board. My advice is...if something seems to be causing you pain...stay away from it. TRY THE SHROOMS Good luck and I hope you get relief real; soon....if you do decide to try the shrooms, can you keep us all informed of your progress. |
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