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Topic: So much to learn here! (Read 434 times) |
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getty6438
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So much to learn here!
« on: Feb 19th, 2006, 7:56pm » |
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Hey Everybody, Don't really no where to start, it seem's we've all been down the same road. Been trying to post something but get side tracted reading all the stories. Think i started having these in 1980 and went 2 or 3 cycles before i found out what was wrong. Doctor's that don't care, med's that did'nt work, trying to hold down a job. So glad this site was and is here! For me they come back every 2 year's for 2 - 3 month's. Tho last time it was for 6 month's. Funny how they went away the day after my divorce was final.......lol go figure! I'm 45 year's old single and have two daughter's 22 and 23. Sure would be nice to have somebody to talk too who understand's the beast. Think i'v tried most the med's last time used imatrex but think i ended up with rebound's. This time i'm on relpax and seem's to be working ok. Still getting them around the clock but not as intence and don't last too long, 5 minutes to 1 hour. But as you all no it's a friggin long time. I'm trying to figure out the chat room and am here most of the time. Anytime anybody need's to talk i'll be here to listen. getty64@hotmail.com
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Jasmyn
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Re: So much to learn here!
« Reply #1 on: Feb 20th, 2006, 4:37am » |
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Hi Getty.
Did you try the imitrex tip on the left?
A lot of people gets relief with the clusterbuster treatments, here is the link:
http://www.clusterbusters.com/
Verapamil and Lithium is also widely used as preventatives, check the info on the left.
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Jazz 
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MJ
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Re: So much to learn here!
« Reply #2 on: Feb 20th, 2006, 6:58am » |
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Welcome aboard Getty.
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MJ
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Richr8
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Welcome Getty!
« Reply #3 on: Feb 20th, 2006, 9:59am » |
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Sorry you had to find us, but glad that you did. As you probably realize you have found the most comprehensive site there is that deals with CH. I'm new here myself and was thrilled to find a group of folks that really understands CH and all of the related issues and treatments.
It sounds as though you have the right idea, read all that you can and if you don't find what you are looking for, just ask. There are many knowledgeable and helpful folks here that are always willing to jump in with their own expereinces and expertise.
Since you did not mention Oxygen in your post, I would suggest that you read up on it as it a primary abortive for many folks here that is very effective and has few side effects. I used Imitrex myself until i started experiencing rebound headaches and now use O2 as my primary abortive.
In regards to the chat room, it seems to be more active in the evening and you just have to check in occasionally to see if anyone is there.
I am looking forward to seeing you there and hearing more from you on the board.
Wishing you PFDAN
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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LeLimey
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Re: So much to learn here!
« Reply #4 on: Feb 20th, 2006, 10:00am » |
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on Feb 19th, 2006, 7:56pm, getty6438 wrote:Funny how they went away the day after my divorce was final.......lol go figure!
.... Still getting them around the clock but not as intence and don't last too long, 5 minutes to 1 hour. |
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Hi Getty!
Its nice to meet you, I love your comment about your divorce.. there's hope for me yet! LOL
I noticed the length of time your attacks last and I wondered if anyone has ever mentioned Paroxysmal Hemicrania to you?
Its another TAC, a headache of the same group as CH which is every bit as painful but the attacks tend to be much shorter, just as you have described. The other main difference is the meds used, there is one which is highly effective called Indomethacin which would be well worth your while trying as it could wipe your attacks out for you. Speak to your neuro about it, it would be worth a trial.
Let us know how you get on okay?
Take care
Helen
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Dragnlance
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Re: So much to learn here!
« Reply #5 on: Feb 20th, 2006, 10:21am » |
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Hey Getty,
Your topic is very accurate. This is not your average site, and the people are more than top notch. There is such a wealth of information like Helen posted,
Quote:I noticed the length of time your attacks last and I wondered if anyone has ever mentioned Paroxysmal Hemicrania to you?
Its another TAC, a headache of the same group as CH which is every bit as painful but the attacks tend to be much shorter, just as you have described. The other main difference is the meds used, there is one which is highly effective called Indomethacin which would be well worth your while trying as it could wipe your attacks out for you. |
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Look into it, because I believe she may be correct.
In the mean time, Welcome, even if it was pain that brought you here.
Lance
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getty6438
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Re: So much to learn here!
« Reply #6 on: Feb 20th, 2006, 3:49pm » |
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on Feb 20th, 2006, 4:37am, Jasmyn wrote:Hi Getty.
Did you try the imitrex tip on the left?
A lot of people gets relief with the clusterbuster treatments, here is the link:
http://www.clusterbusters.com/
Verapamil and Lithium is also widely used as preventatives, check the info on the left.
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Oh ya, Last two cycles, never would have made it through it if i had'nt found it here! I tried to get 3 ch's out of 1 vile, most the time i could. Hate to admit it but I used over 400 vile's last time. Tried the verapamil, did'nt help. But that was a long time ago before i found out what i had. I was trying anything and everything to make them stop, then it all started working against each other and just made thing worse. Thank you for the reply and hope to hear from ya again
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getty6438
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Re: Welcome Getty!
« Reply #7 on: Feb 20th, 2006, 3:56pm » |
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on Feb 20th, 2006, 9:59am, Richr8 wrote:Sorry you had to find us, but glad that you did. As you probably realize you have found the most comprehensive site there is that deals with CH. I'm new here myself and was thrilled to find a group of folks that really understands CH and all of the related issues and treatments.
It sounds as though you have the right idea, read all that you can and if you don't find what you are looking for, just ask. There are many knowledgeable and helpful folks here that are always willing to jump in with their own expereinces and expertise.
Since you did not mention Oxygen in your post, I would suggest that you read up on it as it a primary abortive for many folks here that is very effective and has few side effects. I used Imitrex myself until i started experiencing rebound headaches and now use O2 as my primary abortive.
In regards to the chat room, it seems to be more active in the evening and you just have to check in occasionally to see if anyone is there.
I am looking forward to seeing you there and hearing more from you on the board.
Wishing you PFDAN
Rich |
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Yep, did the o2 thing did'nt help at all. Even when i felt one coming and had time to get on it, just got hammered everytime. Thank's Rick
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getty6438
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Re: So much to learn here!
« Reply #8 on: Feb 20th, 2006, 4:16pm » |
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[quote author=Dragnlance link=board=knowya;num=1140397002;start=0#5 date=02/20/06 at 10:21:06]Hey Getty,
Your topic is very accurate. This is not your average site, and the people are more than top notch. There is such a wealth of information like Helen posted,
Look into it, because I believe she may be correct.
I n the mean time, Welcome, even if it was pain that brou Hey Helen, I think I owe the short one's to the relpax, it's been a God send so far. There's plenty of time's that they get though but so far knock on wood they have been staying in my temple and eye. Most the time i throw on a pair a sun glasses and it relieve's my eye alot. In the past it would be eye temple up the top of my head and down my neck and last for hour's. Now the only thing is i need 2 pill's a day to keep it that way. Been cutting them in 1/2's and 1/4's to drag them out. And they help alot! The 40 mg. relpax has a long halflife on them compared to the imatrex. Yep the ex is gone now if i could loose these ch's i'd be a happy man !!!!!!!! hee hee Thank's Helen
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getty6438
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Re: So much to learn here!
« Reply #9 on: Feb 20th, 2006, 4:22pm » |
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on Feb 20th, 2006, 3:49pm, getty6438 wrote:
Oh ya, Last two cycles, never would have made it through it if i had'nt found it here! I tried to get 3 ch's out of 1 vile, most the time i could. Hate to admit it but I used over 400 vile's last time. Tried the verapamil, did'nt help. But that was a long time ago before i found out what i had. I was trying anything and everything to make them stop, then it all started working against each other and just made thing worse. Thank you for the reply and hope to hear from ya again |
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Thank's Lance and yep i'm gonna check that out. It's been 26 year's i been doing these dang thing's and don't get me wrong i'm still scared to death everytime one come's along but i think this relpax is a big help. Not the answer but a big help.
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LeLimey
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Re: So much to learn here!
« Reply #10 on: Feb 20th, 2006, 4:26pm » |
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If you want to stick with triptans consider frovatriptan. It has a half life of 26 hours and you can take up to two within 24 hours so that maybe of interest to you. They take quite a while (up to two hours) to kick in so are about as much use as a chocolate fireguard if you are using them as an abortive however, if you use them as a semi preventative then they can be very useful.
Don't mix two types of triptans within 24 hours though okay?
Check out all the threads in the meds section, there are so many different things that we will only confuse you if we start listing them.
You read up as much as you can bear and ask all the questions you like, we're here to help okay?!
Take care, you've found us now and you'll never be alone with this again. That's a promise 
Helen
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ABarham
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Re: So much to learn here!
« Reply #11 on: Feb 20th, 2006, 4:42pm » |
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I feel like I have just found a new best friend. My son suffers from chronic ch. It is so horrific to have to watch him. He is 35 and has had this curse for about 7 years. I am so concerned about the kinds and amounts of otc meds he takes or anything else he can get his hands on. So far the docs he has seen just get a glaze over their eyes and don't seem to know what to recommend. They give him pain pills, of course which do touch it unless he takes half the bottle. What good is that?  It is so frustrating I don't know what to do. As his mother, I want to take away his pain, but can't. It breaks my heart when day after day, hour after hour he is in pain. Does anyone have any suggestions on treatment or clinics, or anything that may relieve some of his pain?
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Louise
Mother of CH son
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LeLimey
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Re: So much to learn here!
« Reply #12 on: Feb 20th, 2006, 4:50pm » |
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Hello ABarham and welcome, as a sufferer and mother of a 4 yr old sufferer I understand how hard it is for you to see your child suffer, regardless of how old he is.
What meds has he tried already to your knowledge? There IS alot we can tell you about but I don't want to give you a load of useless info about stuff he has tried.
Is he episodic or chronic?
How long do his hit's/cycles last?
What does he do when he is getting hit?
The more you can tell us the more we can try to help and rest assured, we will!
Regards
Helen
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getty6438
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Re: So much to learn here!
« Reply #13 on: Feb 20th, 2006, 4:53pm » |
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Yep, Your rite Helen there's alota good people here and thank God. Like I say if it was'nt for splitting the imatrex injection's i never would have made it, and I learned that here. I joined here back in 2002 i think it was and had a pretty rotton life since 1998. Blew 4 disk's in my lower back lost my job had to deal with comp, lawyers ssi, my ex found somebody she liked better (poor guy) lol had back surgery that did'nt really work and dealin with these ch's in the mean time. So I kinda got away from this site for awhile but that won't happen again! Not tryin to whine here, but i'd go threw it all again if i could rid these ch's for good! But that won't happen so i guess you's are gonna be stuck with me. Wow now that therpy's over and yep i feel much better thank you I tried the frova and the maxalt they both worked ok till the peek and was'nt enough to keep goin with them. Thank's Helen hope to here from ya again
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getty6438
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Re: So much to learn here!
« Reply #14 on: Feb 20th, 2006, 5:23pm » |
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on Feb 20th, 2006, 4:42pm, ABarham wrote:| I feel like I have just found a new best friend. My son suffers from chronic ch. It is so horrific to have to watch him. He is 35 and has had this curse for about 7 years. I am so concerned about the kinds and amounts of otc meds he takes or anything else he can get his hands on. So far the docs he has seen just get a glaze over their eyes and don't seem to know what to recommend. They give him pain pills, of course which do touch it unless he takes half the bottle. What good is that? It is so frustrating I don't know what to do. As his mother, I want to take away his pain, but can't. It breaks my heart when day after day, hour after hour he is in pain. Does anyone have any suggestions on treatment or clinics, or anything that may relieve some of his pain? |
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Sorry to hear about your son, I m sure alot of us did the same thing out of deperation but taking anything and everything will only make thing's worse, they only start working against each other. With the amount of imatrex we need to battle these thing's if the ins. companies dont stop us the pharmacys will. But i'v had good luck with the imatrex injection's and or (not both)40 mg. relpax tablet's. Good luck and hope you find what work's best. Glenn
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getty6438
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Re: So much to learn here!
« Reply #15 on: Feb 20th, 2006, 5:35pm » |
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on Feb 20th, 2006, 6:58am, MJ wrote:
Thank's MJ
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ABarham
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Re: So much to learn here!
« Reply #16 on: Feb 21st, 2006, 12:31pm » |
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Thanks to everyone for your responses. As far as what he has tried; his favorite seems to be advil liqui gels. But when they go on for days, like I said, he will grasp at anything. Any kind of Rx pain meds and otc. Imitrex does not seem to work for him. As far as what he does when he is attacked, he usually sits with his upper body bent over his knees using his fingertips to put pressure on the right temple. This is where his pain is located. Depending on the severity, he sometimes screams, moans, cries, all of the severe pain ractions. I thought it was bad when his sister suffered so much from migraines that she spent her Senior year of High School on Home Bound. Fortunately for her, they have discipated to the point that she may only have 1 or 2 a year. And, they are not nearly as severe. Again, I am so happy to have found you. It is so difficult to try and make people understand just how bad this is. My son was working out of town and his boss finally saw first hand what he goes through. At least he now has somewhat of an understanding.
Thanks to everyone.
ABarham's mother - Louise
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Louise
Mother of CH son
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ABarham
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Re: So much to learn here!
« Reply #17 on: Feb 21st, 2006, 12:44pm » |
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Okay - just read the info at the imitrex tip site. Does anyone know if Glaxo has been contacted? Maybe if they realized how many sufferers there are, they would be more willing to give this a try. Of course then the docs would have to be educated too. But anything is worth a try.
Do any of you know of any clinical trials for ch? I would love to get my son involved. He has no insurance so everything we do is a financial set back. But it is worth it just in case something comes along that will help. I am very concerned about his mental state. He was hit so hard last week that he said death looks good. Just what a mother wants to hear right? Talk about feeling your heart sink. I am at my wits end and I'm not the one in pain.
Louise
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Louise
Mother of CH son
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ABarham
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Re: So much to learn here!
« Reply #18 on: Feb 21st, 2006, 12:47pm » |
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getty6438 - what is relpax? This is something we have not heard about.
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Louise
Mother of CH son
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ABarham
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Re: So much to learn here!
« Reply #19 on: Feb 21st, 2006, 12:50pm » |
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Helen:
Thanks for your kind words. His ch is chronic. The hits vary. Sometimes they last for a few hours or they can and have gone on for 3 - 4 days with only brief periods of relief from meds. I posted earlier what he has tried and what he does. Any info/help/suggestions would be greatly appreciated.
Thanks, Louise
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Louise
Mother of CH son
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getty6438
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Re: So much to learn here!
« Reply #20 on: Feb 21st, 2006, 1:02pm » |
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It is (eletriptan hydrobromide) It work's alot like imatrex but has a longer halflife. It reduces blood vessels around the brain. there's a web site www.relpax.com or 1-866473-5729
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