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Cluster Headache Help and Support >> Getting to Know Ya >> Hello fellow CHs'. Mixed Feelings Now! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1222324173 Message started by lefteye on Sep 25th, 2008 at 2:29am |
Title: Hello fellow CHs'. Mixed Feelings Now! Post by lefteye on Sep 25th, 2008 at 2:29am
I'm so happy to see you all, and that I'm not alone......but,
I'm so sorry to see others have to cope with this cluster f#$%ing HELL! GOD BLESS YOU ALL! I've just come out of a 5 year remission.... The Devil re-introduced himself with a 6 hour screamer! I think he's more pissed than ever! The damn guy hasn't let up except for a few intermitten hours for 6 days now! My name's Jeff, but you can call me Lefteye. (reasons obvious) I'm 46 yrs old. Had my first attack/episode at the age of 8 and continued till I was correctly diagnosed at the age of 40. Always at the end of the summer season. And usually subsides after 6 or 8 weeks. After 32 yrs of experiments, MRIs,CTs,Sinus Cav. digs, healthy teeth extractions etc. etc. A certain Dr. prescibed a MIRACLE! 5mg tabs of Rizatriptan! I thought this doctor was the Lord Our God himself! This website is such a blessing! For now, I not only have weapons(meds) but, I have a whole CH Army! Now the "devil" is gonna find out what HELL is really about! THANK YOU! So much for this site! And all the work you've done, for it is God's work! |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Guiseppi on Sep 25th, 2008 at 2:41am
I don't know that med but clearly it's in the triptan family, they've been a miracle treatment for many. That being said, have you tried oxygen? 2 years older then you, been battling beasty a few years LESS then you, I guess I'm luckier then you they didn't start in me until I was 18! I can abort an attack, that is be completely pain free, in as little as 6 minutes using just oxygen. No nasty side effects, no triptan hang over! If you haven't tried it, it's having such a high percentage positive effect on the people on the board it's certainly worth a shot.
The 02 system: For it to effectively stop the CH your lungs must get ONLY oxygen. No outside air, no exhaled air. This is best accomplished by using a high flow regulator, at least 15 LPM, a non re breather mask, and it must be started as soon as you feel the attack coming on. Re breather masks, nasal canulas, low flow regulators, all recipes for failure! All that being said, welocme to your new home, damned glad you found us. You will not find a more comprehensive collection of CH info anywhere! Guiseppi |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by lefteye on Sep 25th, 2008 at 6:59am
Thanks Guiseppi.
I've noticed on the boards, the mention of O2 for abortive purposes with positive results...... I dabbled with an O2 tank years ago with a standard rebreather mask. Which you probably already know what the outcome was I got with that! Since then any mention of oxygen I took as a threat! At my own expence I guess, now that I've read your recomendation.....Thank You. I'll be shopping for a H.F.Reg. and non-rebreather mask as soon as I'm done with this post! Awesome! Guiseppi I appreciate the rapid reply........Oxygen ONLY! Got it! |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by DennisM1045 on Sep 25th, 2008 at 11:32am
Hi Jeff,
Welcome home! It's about time you showed up ;) Guiseppi, Rizatriptan is Maxalt. What form of Maxalt are you using Jeff? I hope its Maxalt MLT. It disolves under the toungue and provides the fastes relief for this form of triptan. I'm with Guiseppi on Oxygen. It has cut my triptan use down to a handful per cycle. I use a 25 lpm regulator and a rebreather with a mouth tube instead of a mask. I find it works better for me as I have some facial hair that keeps the mask from making a good seal. -Dennis- |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Brew on Sep 25th, 2008 at 9:16pm DennisM1045 wrote on Sep 25th, 2008 at 11:32am:
Actually, the MLT form of Maxalt was designed merely to make it more convenient to take while away from a sip of water. Rizatriptan is absorbed in the gut, not in the lining of the mouth. The absorption rate for both the pill and the MLT form are almost exactly the same. |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by CH-HELL on Sep 25th, 2008 at 10:15pm
Sorry Brew I'm truely not intending to pick on you as a matter of fact I agree with most of your posts, But this one I have pipe in on. The strips are much faster even though they are mainly absorbed in the stomach they do start in the mouth and by the time it reaches the stomach it is totally ready for absortion, the maxalt pills have a coating over them so they don't disolve in your mouth, this coating can take up to five minutes to disolve depending on the food and acid in the stomach. Phil
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Brew on Sep 26th, 2008 at 9:35am wrote on Sep 25th, 2008 at 10:15pm:
That's why I said "almost exactly" the same. Rizatriptan does not penetrate the lining of the mouth. Doesn't matter what form it's in. The melting MLT version was designed for convenience, not rapidity of absorption. Hell, you could just chew the pill for that matter. I'll give you the five minutes for the pill's coating, but bottom line is that it's not a great way to abort a CH. What's the difference between 25 and 30 minutes when you're in hell? You ain't countin' minutes at that point. O2 does a much better job. In fact, the best would be to take the triptan (and for this I'd use Frova or Amerge because they last longer than Maxalt), and immediately hit the O2. The O2 will abort the current attack, and the triptan will prevent the next few. |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by CH-HELL on Sep 26th, 2008 at 9:53am
I didn't see the "almost" but with the strips they should be completely disolved and absorbed into the blood stream with in fifteen minutes, where I stated that the coating my take up to five minutes to disolve the pill still needs to be broke down to be absorbed. Phil
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Brew on Sep 26th, 2008 at 9:57am
Whatever. I'm not going to split hairs with you. Bottom line is that oral triptans are a less than desirable method for aborting a CH hit that's happening right now.
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by CH-HELL on Sep 26th, 2008 at 10:03am
We are in a total agreement there, injections are the way to go.
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Brew on Sep 26th, 2008 at 10:11am
Injections aren't for everyone - me included. O2 is my first line abortive.
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by on my knees on Sep 27th, 2008 at 1:22pm
my trex and o2 are my gold standards.
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Kimmie on Sep 27th, 2008 at 10:22pm
Remission of five years??? WOW...wish I could have that. :-/
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by fubar on Sep 27th, 2008 at 11:11pm
Hell, I'd take 5 days. I think. I still can't decide if they seem worse at the onset of a cycle, or after they've been wearing you down for months. I haven't had a break now for years, so the pondering is pointless.
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Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Linda_Howell on Sep 28th, 2008 at 3:03am Quote:
I LOVE that description. That is exactly what you have here. An Army and we all have your back.! Linda |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by George_J on Sep 28th, 2008 at 3:20am
An army, yes, 'cept I think I'm a draftee, since I don't remember volunteering. ;)
In any event, welcome home, lefteye--from a fellow lefty. All the best, George |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by Perediablo on Sep 28th, 2008 at 10:02pm
welcome Lefteye,
I too am a lefty. Glad you found us but sorry you had to. Lots of very knowledgeable people here. Listen to them and take from them what you can use. They have all been very helpful to me to be sure. Read, read, read. There is more info here than anywhere else. CH Army eh? I kinda like that. CH Navy would be better. I never liked the whole getting shot at thing too much. I too do not remember the volunteering process for this enlistment. GADZOOKS! I'VE BEEN SHANGHAI'D. Bloody pirates the lot o' ya! ARRRRRRGGH |
Title: Re: Hello fellow CHs'. Mixed Feelings Now! Post by BarbaraD on Sep 29th, 2008 at 12:22pm
Another Lefty here to welcome you... Sorry you had to find us, but grab an oar and start rowing.... you're officiallly drafted into this army... (did any of us volunteer -- don't remember it do any of you????)
There's someone around 24/7 and there's nothing someone can't answer, so sit back and get comfortable... we're all here to help... Hugs BD |
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