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Topic: WELCOME! (Read 49297 times) |
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Night_Zombie
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Re: WELCOME!
« Reply #75 on: Jan 27th, 2005, 10:49am » |
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 hi, havent a clue what Im doing never been on anything like this before. Its now time I stop crying and get to know other people who are putting up with same things, and have a laugh along the way.
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love and hugs xxx
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nani
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Re: WELCOME!
« Reply #76 on: Jan 27th, 2005, 10:57am » |
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Welcome, NZ...and sorry you had to find us. Now that you've found us, look around the site and the boards here. You'll find lots of info and understanding. Pain free wishes to you...nani
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Jeepgun
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Re: WELCOME!
« Reply #77 on: Feb 4th, 2005, 2:45pm » |
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Just wanted to give this message a good healthy BUMP and welcome the newcomers.
Use the links, print out the various pieces of information, educate your physician if you have to, and most of all, know that you don't have to suffer this agony alone anymore.
Welcome. Although I'm sorry that ANY of us have reason to be here, I'm glad that you've found the single most informative place in the world on this hell known as cluster headaches.
My best to you, and wishes for days full of life and laughter, and nights of serene, peaceful rest.
-Frank
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Kalach
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Re: WELCOME!
« Reply #78 on: Feb 17th, 2005, 8:53am » |
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I am new to the board but a long time CH sufferer. I have not had a bad cycle for at least 4 years, but they seem to be back. Have there been any new medications on the market lately? I am using imitrex spray 5mg because thats what we have for my wife' migraines. I used to take the cafrigot supps as a profalaxis.
Kalach
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nani
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Re: WELCOME!
« Reply #79 on: Feb 17th, 2005, 8:58am » |
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Hi Kalach...welcome. You have found the place with a lot of info on meds and treatments. Look around the boards here and gather as much info as you can. Oxygen (see oxygen info link at left) is a very effective abortive treatment for many of us. There are preventative meds we use as well. Print out any info you find helpful and take it to your next dr visit. Pain free wishes, nani
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Biggiestyle
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Wasn't looking to good but I was feeling real well
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Re: WELCOME!
« Reply #80 on: Feb 17th, 2005, 6:34pm » |
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Some Msg boards have a way of "pinning" the thread. This way it always stays on the top. This seems like a thread that should always be up there.
Garrett
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Kalach
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Re: WELCOME!
« Reply #81 on: Feb 19th, 2005, 12:44pm » |
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Has anyone tried Botox injections for relief of CH. My wife had relief from Migraines.
Kalach
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nani
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Re: WELCOME!
« Reply #82 on: Feb 19th, 2005, 2:23pm » |
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There is a thread on this subject on the Medications board. Along with a lot of other treatment info. PF wishes, nani
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cairnterrier
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Re: WELCOME!
« Reply #83 on: Feb 21st, 2005, 1:24am » |
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Looks like last post was ten days ago....Well, I'm new here, have been in remission for almost five years and last week the shadows began showing up. I've had cluster since the age of 20 and am now 57. In the mid-seventies I wanted to set up a support group in New York but none of the neurologists I talked with would ever identify to me, or share the identity of, or even act as a middleman for, any of their other patients who had cluster, in an effort to get us communicating. There was no way to connect with anyone who had this condition. I am glad to see that the internet and some perservering individuals have finally made this a reality, it has been needed for so long. The misunderstanding from non-sufferers that goes with cluster is perhaps second only to the mindless pain generation in its demoralizing effect upon the sufferer. I don't take any medications. I use ice packs and pacing during the strongest attacks. I used to include coffee but I stopped caffeine years ago for other reasons. I know this regimen sounds impossible but it has worked for me for many years in shortening the duration of each attack. Once had a Johns Hopkins man tell me the headaches wouldnt kill me but the medications would. I've seen literally dozens of neurologists over the years but I could not overcome my revulsion to drugs to try any of the therapies they offered. However this past week I have been saddened to see that most medical discussions on the internet are still citing the same medications which were being used ten and fifteen years ago. There really is a lack of awareness and funding regarding this terrible affliction. Guess it just isn't widespread enough or glamorous enough or politically useful enough for big bucks to get behind it. I still get the "deal with it" spiel from my wife of 20 years, who herself is a diabetic. Ironically, I have attended many seminars on her illness so that I would be more in tune with her needs and what was going on with her illness, and have noted how much improved she is mentally about it because she gets so much support and acknowledgment from her doctor and all who are around her. Diabetes gets so much publicity, imagine what that kind of clout would do for cluster? I think the word among specialists is that there will be a cure for diabetes in a few years. Fantastic what sustained effort and funding can do. Not trying to feel sorry for myself---but in my fifty-seven years I have never met a single soul, male or female, who suffered from cluster. So forgive me if I am initially skeptical about this website.... Hope to hear from some of you soon....
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LeLimey
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Re: WELCOME!
« Reply #84 on: Feb 21st, 2005, 4:33am » |
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Hello cairn terrier!
Nice to meet you but I'm sorry you have to be here.
Have you considered trying O2? Thats not a drug but for me it is literally a life saver. I couldn't believe the difference it made for me.
You are right.. there is little or no info and most doctors seem to have never even heard of CH.. thats why this website IS such a help. I'm no longer alone.. I have others who understand EXACTLY what is going on and believe me.. it makes an incredible difference!
There are meet and greets organised through out the year (see the meetings board a bit further down the main "menu"!) and there is a big convention in Dallas in July. Hopefully its not going to be too long until you meet your first clusterhead!
Let us know how you are getting on.. Have a look at the Oxygen Info on the left.. you never know it could just be your "silver bullet" 
And you're not alone anymore
Helen
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cairnterrier
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Re: WELCOME!
« Reply #85 on: Feb 22nd, 2005, 12:06am » |
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Thank you, Helen, for your welcome. I hope it's okay to address you by name here. It does make a difference to know you can talk to others who know firsthand what we go through. For many years I kept daily diaries and full descriptions of every attack, in the hopes of determining some pattern at work. While there were some patterns, they didn't add up to much.
Actually I did try 02 for awhile. While I was still living in New York. Probably not for long enough though, because I did not notice any difference in the attacks before vs. after. I am glad you found something that helps you. And I too am sorry to have to meet anyone under these kinds of circumstances.
It's interesting to note that New York and the state where I now reside (and have for 20 years) both have the highest number of CH members. Now what does that mean??
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LeLimey
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Re: WELCOME!
« Reply #86 on: Feb 22nd, 2005, 4:12am » |
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It means birds of a feather flock together! 
When you tried the O2 did you try it at around 12-15 LPM and use a non rebreather mask? I only ask because if you don't have the right set up its just not going to be as effective. When I first started with it I took a bit of getting used to it and then BINGO! perfect!
Oh and its fine to call me Helen.. call me anything you like except for shortarse.. I'm not too keen on that one!
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HAMMERED
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Re: WELCOME!
« Reply #87 on: Feb 28th, 2005, 10:24pm » |
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i wish i could determine how to use this site. i picked you because you were under "wellcome". i have been jumping around the site and have picked up a few tips. i have been a clusterhead since around 1997. i have had four cycles of 4 to 6 weeks each, 2 to 6 clusters a day. i consider myself lucky to be able to go 2 to 3 years with pain free. i am also lucky that i get relief from oxygen. i suffered through the first cycle without getting a dx from several doctors. my optometrist saw the horner's syndrome and lead to the dx. i learned of oxygen on the internet. my aches last for one hour so it is difficult to determine if oral medication help. does this demon ever stop returning?!!
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LeLimey
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Re: WELCOME!
« Reply #88 on: Mar 1st, 2005, 4:47am » |
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Hi Kralicke its nice to meet you although I'm sorry it is here.
I'm not going to say you are "lucky" to get short cycles or to have them well spaced.. pain is pain how ever and whenever you get it.
You have O2 which is good as thats my "drug" of choice, imitrex injections are fast working, usually about five-10 minutes but there is alot of thought that these prolong cycles. Have a look at the meds available. Have a look at the kudzu and psilcybin threads on the meds board, both have been of very great interest to me.
There is a great wealth of information here so grab what you need. Don't be afraid to ask further questions and let us know how you are getting on.
Wishing you success in finding what will work for you
PFDANS
Helen
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Dancin with the Demon
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Cursed for my Sins as a Soundman!!
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Re: WELCOME!
« Reply #89 on: Mar 3rd, 2005, 5:33pm » |
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so this is home. so be it!! i consider the rath of the Demon a curse,for myself!! a 15yr marraige GONE!! The ability to function without retribution from a Demon ,bent on getting me to live only in my house. GONE!! Who`s only sole purpose is to make sure that He arrises everytime i find a new Female friend, only to chase her off. And who can blame her/them, No Women will knowingly allow herself to be the rearguard or a bystander as She watches Me, Hop and Pop with the Demon himself.
Believe it or not I`m not angry, i just see it as a form of Anti-Terrorism, to take the Beast ON,HEAD ON. For he is the Terrorist and i am the Operator, Never Quitting,Never letting him win,ever again.
I have my Gear, my Daily pills, my OxY, and my Thermo-Nuclear Device (Imitrix-injectable) and i have 8yrs Combat Experience.
My Deadliest Weapon , MY MIND and WILL !!
But most importently, I WILL NOT FAIL !!
I will bring Democracy back to my head, and The
Terrorist, WILL FALL !!
This is the needed attitude of the suffer. I spent 3yrs in my house never leaveing, NEVER AGAIN !! Yes things are rough most of the time,I`m diagnost as a Chronic Suffer, and by the lack of releif i`ve gott`n , i`d say the Nurologist got that one, Right ON.
But this is my attitude ,as taught to me by a Special Friend. I`ve Won the Battles and I will WIN the WAR !!
And i sincerely Hope anyone that reads this, See`s the Humor i`m using, but also GETS THE MESSAGE.
DO NOT QUIT !! It is a Terrorist, and YOU will Prevail !
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xmas1225us
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Re: WELCOME!
« Reply #90 on: Mar 5th, 2005, 4:00pm » |
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Hello all: I just joined this web site and now I feel a little better knowing that i am not the only person living with this, what do you guys call it." The Beast", well its back again and being a stay at homedad of two young girls 2 yrs and 9 mths, the lack of sleep is killing me, i hope i can bring this topic up to my Dr. He informend i have nasel polyps and i thought that was causing all this pain, but after reading all this info, i belive i fall in this catagory. I am happy this site is here and will be a regular visitor here. stya safe all, bye.
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Iggy
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Re: WELCOME!
« Reply #91 on: Mar 10th, 2005, 5:19pm » |
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good day everyone I hope. I have just found this wonderful site. See I am a sufferer also. I am episodic and currently waiting for my little friend to arrive. It`s been a little over a year now. I know I should be grateful for this time off but I also know what is coming.I am truly grateful for finding you all here. I like to think I will never get them again but I know the truth,the beast will return. So to all of us suffering now I say a prayer and to all those waiting like me try not to dwell to much on the beast for he will return. Try to just live ONE DAY AT A TIME.
Iggy
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LeLimey
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Re: WELCOME!
« Reply #92 on: Mar 10th, 2005, 5:55pm » |
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Hello Iggy, nice to meet you, have a good look around, I'm usre you will find tons of stuff that will interest you and be of use to you!
What abortives and preventatives are you using (or rather do you use when you are in cycle?) If you haven't found them of much use so far then keep reading you WILL find something that will help you!
Tell us a bit more about yourself and ask any questions you need to
Welcome!
Helen
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ruff
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Re: WELCOME!
« Reply #93 on: Mar 12th, 2005, 7:29am » |
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I feel I should say hi to the welcome wagon.
I asked a few questions about Prednisone and got lots of answers and advise, the best I found is:
1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.
I would like to thank E-Double and Gator for their links and comments, also the great DJ for creating this site.
I have a Dr. appointment this Monday and because of this site I'll be going with loads of information.
If your new to this site, in my opinion this is the best place to be if you suffer from CH, better than the Dr. office.
Great to be ruff'n it out with all of you.
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thesufferer
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Re: WELCOME!
« Reply #94 on: Mar 14th, 2005, 8:18pm » |
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Hello everyone! My name is Curt. I am very new to this site and so far I like the info I read and know that I am not alone out there. I've been suffering from CH since 1982 when I was stationed in Panama. I was diognosed with CH in 1996 and through out that time I thought it was just me with severe sinus problems. I know the truth and it still hurts. I have tried different treatments and the best for me are imitrex injections. The headaches came back about a month ago with a vengence. It had been three years since my last demons and I felt very good about it. But now they are back. This site helps with my attitude about them. I feel it "Always" on my left side of my head. It normally happens at night especially when I am asleep, but lately it's been happenning during the day and affecting my job. The one word I can describe about the whole ordeal is fraustrated. For all the people who feel my pain, keep your chin up! 
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Fellow sufferer!!!
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adonasetb
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Suffering for 22 years with CH's
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Re: WELCOME!
« Reply #95 on: Mar 15th, 2005, 3:19pm » |
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I'm another newbie to the group.
I was headache free all my life - until my 39th birthday and that night I woke up with a pain that felt like someone had driven a red-hot spike into my left temple - I'm now 61 and that spike has gone from red-hot to white-hot and the longest I've gone without suffering from a cluster has been 1 week. I should say the longest I had ever gone before was 1 week - I've now gone almost 2 weeks without a cluster (a new record for me!!!!!) I've been scanned, doplered, wired with monitors, injected, probed, tried every medication in the books, monitored my diet, even went for the golden-needles, and my check-book emptied by the medical profession all with negative results.
Most of the clusters hit during the night but that's not always the rule - they can hit at any time and without warning. There ain't nothing like being in rush hour traffic and having the cluster suddenly hit - find the shoulder of the road, squeeze your head and wait.
Now for the real reason I'm posting - not to whine or repeat the symptoms that everyone is experiencing but to offer up what MIGHT be a preventative - This is the longest i've gone in 22 years without a cluster and so I'm hopeful that I've found something that just might work - and that is folic acid. A friend recommended it and I got a daily multi-vitamin that contains folic acid - I know, it sounds too simple - but so far, so good.
To everyone, I'd like to say thanks for being here - support and knowing we're not alone is wonderful.
Adonaset
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pubgirl
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Adonaset
I'm glad you found us, and glad you have found something that works for you. I don't think it is any miraculous silver bullet though, I took folic acid before trying to get pregnant and it had no effect on my headaches at all (had a lovely healthy baby though!  )
Wendy
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adonasetb
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Suffering for 22 years with CH's
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Re: WELCOME!
« Reply #97 on: Mar 16th, 2005, 9:23pm » |
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another day without the cluster - so something is working.
no clusters and no pregancy so far lol - thank you for the welcome.
adonaset
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orso
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Re: WELCOME!
« Reply #98 on: Mar 27th, 2005, 4:21pm » |
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I'm new to the board been dealing with the beast since 1988 only thing that will stop the pain is narcotics. Of course they raise the slobber and drool factor also. I've tried numerous scripts and O2 therapy nothing seems to work. I'm fairly accomplished in the martial arts and the mind control/relaxation therapy seems to help some but it take total concentration and the headaches destroy that. I had a series of MRI's EEG's and CT scans in 1988' that ruled out everything but Clusters and that's when the Neuroguy diagnosed them but lately the really severe ones have been accompanied by short periods of, not really unconsciousness, but just not totally with it, til the headache subsides and I'm back to normal and able to regain my feet and surroundings. My wife has stolen and hidden my drivers license and I'm scheduled for another round of the same tests again next week I guess it's okay to be scared. They hurt worse than being shot, and least you know somebody's trying to do that and you can shoot back.
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If I had a wish I would take the pain and suffering that you all feel, But alas, I am but a man, and I sin in my wish, for only One is capable of taking that pain and suffering: The Lord Jesus Christ
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nani
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Re: WELCOME!
« Reply #99 on: Mar 28th, 2005, 9:04am » |
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Sorry you're having such a hard time orso. I'm surprised that narcotics stop the pain for you. Have you been diagnosed with CH? If so and you can't find relief with CH drugs, try this...
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
Read through all the threads even though some are long. Many of us have found kudzu helpful. Pay special attention to possible drug interactions.
Good luck and pain free wishes to you, nani
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Others may come and go, but MY power is MINE.
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