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        Cluster Headache Help and Support >> Getting to Know Ya >> Thank You!cont.
        
(Message started by: zolapower on Feb 2^nd, 2008, 4:30pm)

Title: Thank You!cont.
Post by zolapower on Feb 2^nd, 2008, 4:30pm

'01 New GP -Diagnoses CH-scibes Melts(can't remember what) Great-20 mins or so
Feb 25th 2002-New ballgame- 4-5 weeks duration 3-4 attacks per day-GP scribesImagran nasal inhalers (YEEESSS!) & O2 (ok but I now know why,itwas a 2/4 lpm regulator)
Jun '06- As above (near enough 2 save time!)
Jan 23rd '08-They're Baaaacck! GP scribes 15 lpm regulator but comes without non rebreather mask (on order coming monday I hope-will need advice on use)
As indeed with many other questions I have.
You may have guessed I am not the sort to join let alone "post" on a chat site but this is different! ran out of space again will stop & see if anyone replies. thanks

Title: Re: Thank You!cont.
Post by Linda_Howell on Feb 2^nd, 2008, 6:19pm

No idea of why you think you ran out of space. Your post was not long at all.

Anyway welcome to the nut house. There will be a lot of reading to go through here, but you will come away with a much greater idea of what you're dealing with and probably a lot of help too. Start with clicking the OUCH website (To the left of here) first.

Linda

Title: Re: Thank You!cont.
Post by mummymac on Feb 2^nd, 2008, 7:05pm

Zolapower

Welcome to Clusterville :)

You will always get a reply here and lots of advise when needed. Everyone is very willing to help, there are a lot of people here with a lot of knowlage, there is always some one who can answer a question or point the way to an answer.

Read everthing here it is a big help and do post and do join in.

I think you have to write a lot more than you have to run out of space, you can get a lot in one post if needed.

Sorry you are suffering right now, but at least you have found us

Title: Re: Thank You!cont.
Post by zolapower on Feb 2^nd, 2008, 7:38pm

Thanks for reply. Yeah been on OUCH very helpful too.
Tried Red Bull last night & today -definitely helped,great to know coffee is back on (always avoided for obvious fear of making it worse) lol "making it worse how can I make it worse? Jehova! Jehova!"sorry off again right well this mask (coming soon) Do you think it will be any/alot better than my existing set up (face mask with holes 15 lpm) this seems to work fairly well usually after 10 mins (seems quicker with RB but only 2 days in with that)if not I take Imigran inhaler (Q2! )do you think the injectible form is any/alot better/quicker?Bearing in mind I absolutely detest needles as my type 1 diabetic 13 yr old daughter who "shoots up" 4 times a day would be quick to point out!
I have also 2 "differences" with most of the other posts & readings I have made :1. lots of folk talk about banging thier heads during an attack,well light stroking is about all I can manage &2. if a full blown no.10 comes on & the o2 & Imagran have failed (3-5 times a bout) I get intense & debillitating shivers & HAVE to be warm.The last summer attack(jun '06) I went to bed in dressing gown with the winter duvet on top! This time of year I dread having one (we have ineffective hot air C/H upstairs). I have not heard of any one else experience this.
The other thing is Preventive. My GP has scribed Clonidine which I am not taking after reading the bumph
says that it CONSTRICTS the arteries as opposed to dilating them (like Imagran). It seems like Verpamil(i think thats right) may be the one to try?
Well I cannot tell you how fantastic this is being able to talk to and read about other sufferers ( I had no idea there was a chronic version ,when reading those for the first time last week I was in tears for what you guys must go through) The "Letter to Colleagues" & "The Devil" are fantastic & have bought a whole new understanding not only for those around me but also for ME.
Finally, for now (!) How I ran out of space.........DOH!.
like I said not used to any form of chatroom (except sending explitives to lucky b****** who outdraw me in the Poker rooms!!!!) but I'm getting the hang of it now.Ithought when you got to the bottom that was it! You might actually regret pointing that out!!
Bye for now
Colin

Title: Re: Thank You!cont.
Post by RichardN on Feb 3^rd, 2008, 3:51am

Hi Colin & Welcome to Clusterville

First . . . I think you need a little better understanding of what's happening in your head. You said that you weren't taking the Clonidine (not personally familiar with it), because it "CONSTRICTS the arteries as opposed to dilating them (like Imagran)" . . . . Imagran (called Imitrex here) IS a vaso-constrictor, as is coffee and the energy drinks with caffeine & taurine . . . . and that's a GOOD thing.

Our pain is caused by the dilation of the blood vessels which run beside the trigeminal nerve (on the OUCH site there's a picture showing this nerve . . . you can trace your pain by the location of this nerve . . . eye, sinuses, teeth. Current belief is that the hypothalmus (for unknown reasons) sends an incorrect signal which dilates those blood vessels (up to 20 times), putting pressure on the nerve, creating the pain. Imagran/Imitrex injectibles are the fastest vaso-constrictor and will work within minutes for those that can use them.

I can't use Imitrex (Imagran) due to some artery blockage and high cholesterol . . . so 02 is my only abortive (with coffee if available, depending on the severity of the attack.

Yes, the non-rebreather mask will be more effective. You need to get 100% 02 to get the best results. The bag collects 02 when you exhale (will usually fill in 3-4 seconds), and gives you plenty of volumne to inhale (also saves the 02 you're currently wasting when you exhale.

When you get your mask, remove the little rubber valve(s) from the side of the mask and tape up the holes to be sure you're getting 100% 02 when you inhale . . . then slightly pull the bottom of the mask away from your face to allow you to exhale, then hold tight to your face again and inhale . . . repeat til he goes away. If you get night hits, DO NOT USE THE STRAP ON THE MASK! . . . if you lie back down and go to sleep with the mask strapped on, you'll wake strangling for air when your tank runs out.

MINUTES MATTER with CH . . . don't wait til you're "dancing" to use. If used early-on in the attack I can kill the beast in minutes.

Read, read, read . . . and ask any questions you might have. We truly understand your pain.

Be Safe, PFDANs

Richard

Title: Re: Thank You!cont.
Post by Zolapower on Feb 4^th, 2008, 2:08pm

Hi Richard,
Thanks for your corrections & advice ( I got things mixed up, the clonodine Dilates the blood vessels so I have discontinued it & think I will try Verapsimil) I was hoping for some advice with preventative & also some replies to my question about my"shivers" (see "Thank You") but nothing so far. It seems odd after my initial over whelming relief at finding out that so many others are here to help , then that the symptons described are identical even explanations about things like the bodyclock part of the brain connection (I used to think what is the only thing in common with 3 consecutive cycles? answer......October....What? how can time of year affect this) & yet it seems I have a Major difference in that I suffer these intese cold shivers. Any ideas?
Thanks pfdan
Colin

Title: Re: Thank You!cont.
Post by Bob_Johnson on Feb 4^th, 2008, 3:40pm

Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
==============================
Handb Exp Pharmacol. 2007;(177):129-43.

Serotonin receptor ligands: treatments of acute migraine and cluster headache.

Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]

Title: Re: Thank You!cont.
Post by caoimhin on Feb 5^th, 2008, 9:43pm

Hi Colin

I get the shakes sometimes when the beast decides to get medieval but cant say i ever felt cold. But then im not a veteran so it might be common enough.
R u a Chelsea fan? (London Zolapower) if so hope yous ad to liverpool's dismal season (lol!!) on sunday.

Title: Re: Thank You!cont.
Post by ski2k on Feb 6^th, 2008, 2:39am

Welcome! I'm glad you found us, and have found relief in the knowledge that you are not alone!

I can't say I get JUST shivers when a bad one hits, but it does happen. For me, I go to either extreme.... either freezing cold, or burning hot! I've gone from putting on extra clothes and thrashing around in bed under all the covers I can find, to stripping down and pacing in front of the air conditioner. We all seem to go through different things during a hit.

Keep reading up on everything you can here! The biggest weapon we have in fighting the beast is knowledge! Hope the O2 works out for you when you get the new mask!

Best wishes,
Adam