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Title: new member Post by drnoe on Sep 22nd, 2003, 11:59am Hi folks, Never done this kinda thing before, so please forgive any ineptness. I'm 51 and have had CH's since I was 17. Pretty standard periodic til Jan 96 when I was having THE WORST ever and shooting demerol so I could sleep and my doctor suggested oxygen. Wow. Stopped one cold AND I was PF for 7 years until about a month ago. And the oxygen isn't working and the codeine only lasts an hour and they never entirely go away. I liken it to a flower bud when at it's lowest discomfort presence and as soon as it starts to "bloom" I use hot compresses and they retreat to a "bud", usually. This morning wasn't usual.YOW! 4 hours sleep in the last 48 hrs. I look forward to "meeting" y'all. I like to laugh. |
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Title: Re: new member Post by BarbaraD on Sep 22nd, 2003, 12:12pm Welcom to Clusterville - sorry you're here, but you've found the right place to be. Sounds like you need to see a neuro. Imitrex is the drug of choice around here for stopping the pain of CH and there a a lot of others for the prevention (nothing works on everyone). My best suggestion is that you look to the left and start reading. We have the best information here than anywhere in the world. Go to the neuro ARMED and KNOW what you're talking about when you get there. For 99% of us who suffer CH, naracotics are a waste of time and money. They just don't work on CH. They just make us goofy, but don't kill the pain. We need vaso constrictors like Imitrex or Cafagot (my particular drug of choice). But READ READ READ and then READ some more. We've spent years gathering information on what works and what doesn't work for CH. There are a lot of us OldTimers on this MB that have tried EVERYTHING. (Trust me that banana peels wrapped around your forehead DO NOT work!) Again, welcome to Clusterville. Hugs BD |
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Title: Re: new member Post by TxBasslady on Sep 22nd, 2003, 12:19pm :) Hi Drnoe.... Welcome to the board. Hope you find what you need here. There is so much good information and the support is outstanding. Lots of great folks here. 8) Check out the links to the left and you will find a wealth of information and alot of just plain ole good advice. I have found that the support is here 24/7. Always someone up and about. If you like to laugh....you will find that here also... ;D Kinda hard to believe that us clusterheads can have a sense of humor. I think there is power in laughter. It's a great healer !!!!!!! ;D Welcome again, sweetie............enjoy !!!!!!!! ;) Jean |
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Title: Re: new member Post by drnoe on Sep 22nd, 2003, 12:26pm Thanks for the welcome Barbara D' I'm seeing Dr. Kudrow for the 1st time later in the week. Actually, until the oxygen nothing worked except codeine. Tried the ergots et al . Hoping the Dr. will fix everything although hate having to start the guinea pig game again. |
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Title: Re: new member Post by aprilbee on Sep 22nd, 2003, 12:27pm Welcome drnoe! Sorry you are getting hit after so many pain free years. You have found the right place for understanding, support and love. Hope you can find some relief soon! |
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Title: Re: new member Post by ClusterChuck on Sep 22nd, 2003, 2:09pm Hi, Drnoe ... Welcome aboard! Sorry you have to be here, but now you are, stick around! I have had this beast for over twenty years myself. I have been chronic for a while now. Oxygen used to work for me too, and then it stopped. My neuro insisted that I get set up with O2 again, and to used it every time. I'll be damned if it doesn't work, some of the time. For me, it averages out to about 50% of the time. But I'll take it!!! Knocking half of them out is better than none of them! Also, make sure you are using it the correct way (if you have had success in the past, you probably are, but it doesn't hurt to check.). Read the button on the left for the proper way. Without the proper mask, and correct airflow, it will not work, ever! Now you are in this boat with the rest of us, so grab an oar (they are in that rack behind you) and start rowing!! It takes all of us to get this tub moving, and don't slack off, as we have this mean woman that carries TWO whips, that she is not afraid to use if she catches you loafing at the oar!!! No cigarettes allowed at your work station. If she is in a good mood, she will let you take a cigarette break. heehee!!! Good luck and keep us informed. We care! Chuck PS: Cootie, can I take a cigarette break now? |
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Title: Re: new member Post by Cooked Brain on Sep 22nd, 2003, 2:11pm welcome to the board D ! |
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Title: Re: new member Post by cootie on Sep 22nd, 2003, 2:40pm Welcome drnoe.....you'll learn alot comeing here...and of course find ALOT of laughs no doubt too.......the humor runs rampet at times tho. Pam that has whips and oars in no particular order Sure Chuck you can take a beer break too if ya want....I'll give ya an extra 30 minutes fer bein so polite ! ;D |
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Title: Re: new member Post by ClusterChuck on Sep 22nd, 2003, 3:38pm Cootie, I don't drink beer, but how about a nice drrrryyyyyy martini??? Straight up .... Two olives, pluleeezeee ... Cool Cruising! Chuck |
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Title: Re: new member Post by Cerberus on Sep 22nd, 2003, 4:45pm Greetings and condolances both Doc. Demerol & codiene...............NARCOTICS ARE BAD for CH! well.....at least they have been for me. ;D Dump the narcs and get some Imitrex, or Zomig, Lithium, Verpamil, or some other blood pressure & pain meds. The Narcs won't help. Get with a doc to get something your body and mind can handle first. this is just a short list of things that have worked for others. and Find a specialist (neuro) I don't have one but its a good way to get what ya need if there are no other resources. Welcome to the S.S. Sinking Fast, As a newbie you either get to row or man a pail to bail out the excess........take your pick we're all here fer ya. PF time soon to ya, Ramon |
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Title: Re: new member Post by Prense on Sep 22nd, 2003, 5:29pm Welcome to Clusterville! I gotta agree with the narc comments...They don't touch an attack for the majority, and CH attacks happen way too frequently for narcs. If you can take it, imitrex injections work wonders for alot of us. Are you currently taking any preventatives, or have you in the past? Like Chuck said...don't allow the oar to be idle! Best wishes! Chris |
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Title: Re: new member Post by Tom K on Sep 22nd, 2003, 5:36pm I guess I will jump on the welcome boat, wagon, train, whatever it is today. I got my first CH when I was 16 (I'm 35 now), right smack dab in the middle of a trig class. Thought my eye was going to fall out and was sure that I was the only person in the world that this was happening to. Somewhere around '88 a doc told me it was clusters and gave me Indomiacin, an anti-inflamitory. It "worked". Actuall, it made me puke, then put me to sleep for 3 hours and when I woke up, no HA. Fastforward to 2000, punched Clusterheadache into Search.com and found the site. Have been a member since and have found great people and awesome humor the whole time. I don't post much but get great support when it is needed. It is kinda hard to stare at a puter screen when I am in a cycle. Well, that is my story, and I'm stickin' to it! Welcome, pull up a chair and give it a row. |
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Title: Re: new member Post by Patrick_A on Sep 22nd, 2003, 5:37pm Welcome to the house of pain Drnoe. We try to have fun while we are here, and we vent a lot. I hope ya find the right meds. PF, Patrick |
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Title: Re: new member Post by drnoe on Sep 22nd, 2003, 6:54pm Hi and thanks everyone for writing. I agree that narcs aren't a great solution but I did read the stuff on the left before joining, specially the meds, and it looks like Imitrex oxygen and narcotics were the top 3 recommended first resources as well as the 3 most effective for most people so it can'y be that unusual. I really hope Imitrex will work.REALLY. But what I'd really like is an effective placebo. Where is the research? Don't quite get "rowing or bailing" Like giving or receiving? |
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Title: Re: new member Post by Prense on Sep 22nd, 2003, 6:56pm on 09/22/03 at 18:54:20, drnoe wrote:
Like working! Doing yer part to keep the boat afloat. ;D |
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Title: Re: new member Post by Hooter on Sep 22nd, 2003, 7:19pm A big hello from 'over the pond' to drnoe and Tom Welcome both, sorry you needed to find us but glad you did! Tom, might be wrong here but I think the drug your doctor gave you is the one normally prescribed to treat/rule out CPH which is different to CH.(see headache links on the left hand side for CPH) Some of what you say could suggest that you may have CPH rather than CH, the symptoms are very similar but there are differences. Cheer if you do find out it is CPH because I believe CPH responds more easily to treatment than CH. Other people here know more about CPH than I do, it may be worth detailing your symptoms for others here and also doing the cluster quiz. Wendy the Brit |
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Title: Re: new member Post by Miss_Deleny on Sep 22nd, 2003, 7:28pm Welcome Drnoe! Sorry you had to hunt us down but sure glad you found us! There isnt anything really that I can add to what has already been said. So instead, I'll just say Hi! and welcome! Wishing you PFDaN's, ~April~ Psst ... watch out for the crazy ones at the end there ... they like making you row with their oars as well as the one that Cootie gives ya. |
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Title: Re: new member Post by Cerberus on Sep 22nd, 2003, 7:33pm I reckon I should have been more specific about the narcotics thing.......Last year I Had a 10 on the Kip scale (before diagnosis) So to the E.R. we went and the attending ordered Demerol for my pain...............Yes the Demerol made me feel great and at that point I really didn't care that I had a 10 HA going.......but that is exactly the point I STILL had a K10 HA going and when the drug wore off the Beast came back twice as strong so I Vowed never to use Narcotics for HA pain again. Rowing & Bailing: figure of speech frequently used here to describe the efforts of battling and supporting the CH and other Sufferers.......(hope this cleared that up a bit) PF , Ramon |
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Title: Re: new member Post by Tom K on Sep 22nd, 2003, 7:37pm Hi Hooter. CPH was ruled out a long time ago, I haven't taken Indo for about 13 years. When Imitrex came out, my doc put me right on it and it has worked every time. It is a true miracle. At one time I said I would pay anything for Imitrex and when I lost my job and had to pay for my own meds, I did...to the tune of 3K for 4 weeks worth of Imitrex. As for the "crazy ones on the end", are they (we) the same people in school who wore the black concert tees and had a bad attitude during class? Just making sure I fit in with the right crowd! LOL |
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Title: Re: new member Post by Hooter on Sep 22nd, 2003, 7:41pm Cheers Tom Just asking because it appears that doctors are not ruling out CPH first with most people in this country, which is semi-criminal as it responds in almost every case to Indomethacin as far as I know. This place is full of total basket cases. If you are one you'll feel well at home. As for the concert T shirts, I get the impression that as long as your T shirts are VERY old and from legends of Rock tour bands, you should fit in very well! Wendy |
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Title: Re: new member Post by drnoe on Sep 22nd, 2003, 8:11pm HI Prense:Thanks for the clear up. When I can I will be as helpful a member as I can. Right now a dead mans float is about all I can manage. Don't like boats, though. Get seasick. Cerberus:YEAH! I know too well the CH is only "masked " and is often lurking about waiting for the narcotic to wear off. To you and everyone else who wrote I want to say that being "with you" is the only good thing that happened to me today. So far. Sincere thanks. |
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Title: Re: new member Post by Mr.Happy on Sep 22nd, 2003, 8:29pm on 09/22/03 at 20:11:31, drnoe wrote:
Just don't drop the soap. This is an unrepentant crowd of sinners. Best of luck with Doc K............that surname holds a lot of honorifics with some folks around here. California Chapter....you got fresh meat on the spit! Where's the welcome wagon? At least toss a virgin his way. Yes, noe.....welcome to the diner, RJ |
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Title: Re: new member Post by Ann on Sep 22nd, 2003, 8:44pm RJ, "Toss him a virgin"?? LMAO In this crowd? You have got to be kidding! ;D DrNoe... welcome...sorry you had to find us. Good luck with Dr. Kudrow. We've heard he's a pretty good guy. PFDAN hugs Ann |
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Title: Re: new member Post by tsayswhy on Sep 22nd, 2003, 9:34pm Hi Drnoe welcome to our board! i was on narcs and imitrex pills for 4 year before seeing a neuro. and told me the lenth of time it takes to make them go away tell you they are not working and narcs are not good for cluster. see a good neuro. to get what will help you Good luck tari |
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Title: Re: new member Post by Charlie on Sep 22nd, 2003, 10:45pm Welcome to our madhouse. You'll find a lot of ideas and suggestions on how to handle this horror. Lots of lunacy as well. Stick around and let us know how things are going. Here are two helpful links: The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others. http://www.ouch-uk.org/ch/note_colleagues.cfm http://www.netsync.net/users/charlies/ Charlie |
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