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Topic: Sorry to be back ... (Read 600 times) |
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TimeTraveller
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Sorry to be back ...
« on: Jan 9th, 2003, 9:49am » |
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Hi,
Its been nearly 4 years since I last visited here, 4 years of complete freedom from the O2 tanks, the scalding hot flannel pressed to my head at 2.00am in the morning, the fear that one alcoholic drink would trigger an attack, the pain.
Well the beast is back, why ? no real idea. I've been laid of work for a couple of months and loving every minute of it, fully relaxed, indulging in my hobbies (I'm lucky the wife's got a good job  ) and only half seriously looking for a new position (I'm 50 now, the kids have flown the nest, the house is ours and I was hoping to take it a little easier)
Then few days after Christmas, 2.00am, and I'm woken by that first burst of pain we all know all to well. Funnily enough, I went into the old routine without thinking, fill the basin with scalding water, get the flannel out, make a mug of VERY strong black coffee, light a cigarette and prepare to do battle.
As before, catch it early enough and the beast retreats quickly (10-15 mins), wait too long and its a long grind.
I've had 4 attacks in the last 5 days now, always at night a few hours after falling asleep. That's how it started last time, and progressed into the odd one in the day, and frequent ones in the evening IF I had a drink. That attack (my first) lasted for nearly 4 years without a break. I tried all the usual stuff, beta blockers etc.. (Imitrex was only just coming on to the market when the attack ceased) but nothing worked for me like oxygen, the hot flannel and coffee. I was lucky I guess that I never got the real screamer (ice pick ?) type pain, but what I did get was bad enough.
So fellow clusterheads, whats new 4 years down the line, anything I should/could try ? Reading the posts over the last few days doesn't highlight anything obvious. I see they now think they know where the root problem lies in the brain, maybe that will bring a cure.
I'm sorry to be back, but glad you guys are still there to help ..
TT
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"I came from the future to study the past and got lost in the present"
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echo
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Chronic and still alive --- I Win!
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Re: Sorry to be back ...
« Reply #1 on: Jan 9th, 2003, 10:06am » |
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Sorry to read that the beast has returned. One would think after 4 years he would have lost your address.
Hopefully this visit will be a short one and then he'll head back into hiding.
Hang in there.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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firebrix
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I must never weaken.
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Re: Sorry to be back ...
« Reply #2 on: Jan 9th, 2003, 3:27pm » |
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Sorry to hear that you're being hammered again Time Traveller.
For the latest in news concerning CH please check through the archives and searches for info you require. They are found on the buttons on the left of your screen, and in there, you'll find the info to update you.
Also check the OUCH website - there's heaps of info there too. IM or E mail me if you need further assistance.
Imitrex injections abort ha. within 6-15 mins, but you'd need to see a neuro or at least a doctor to get a script.
Get an O2 tank, regulator and non-rebreather mask - many ha. can be aborted if O2 is started early.
Take some comfort in the fact that you've had a few years without ha. They will probably disappear for you again, hopefully soon.
Welcome, and hang in there mate!
There are some awesome people on this site with better knowledge and info than many medical professionals. I learned more here than I did in years searching libraries!
BTW - alcohol is probably a NO-NO if you're in cycle.
Join me in a nice cup of Irish Breakfast Tea?
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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domm
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Re: Sorry to be back ...
« Reply #3 on: Jan 9th, 2003, 4:41pm » |
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Time - welcome to the board. Sounds like you've "been there, done that". I aborted my last cycle with Verapamil. Used O2 and Imitrex until the Verap kicked in.
There's other new stuff out there, read up.
Good luck in finding the right set of meds for you
domm
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don
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Yup, we are here to help.
Unlike you who has no been here to help ANYONE in 4 years.
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| « Last Edit: Jan 9th, 2003, 7:44pm by don » |
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suzy617
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Re: Sorry to be back ...
« Reply #5 on: Jan 9th, 2003, 8:02pm » |
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Sorry TT that the beast has come back after all this time but Don is right. This board is not just for people in cycle and in pain but also for the supporters that stick around to help them thru the bad times. Hope you plan on making a habit of us now...
suzy
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When God measures men, He puts the tape around the heart, not the head.
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jonny
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I aint been here in four years cause I was PF.
Wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah, wah,wah
My head hurts help me.
Christ!!!!!!
"I'm sorry to be back, but glad you guys are still there to help"............Classic line!!!!!!!!.....Where were you when I needed you, TT?
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| « Last Edit: Jan 9th, 2003, 8:07pm by jonny » |
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2late
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Ride Free..Pain Free
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Re: Sorry to be back ...
« Reply #7 on: Jan 9th, 2003, 10:14pm » |
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i agree with jonny........why bail when yer PF? ........2late
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TimeTraveller
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Re: Sorry to be back ...
« Reply #8 on: Jan 10th, 2003, 4:39am » |
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Taking a deep breath before replying ....
Don, Suzy617, Jonny, 2late, on the surface a fair 'flame', yes I did 'retire' from this group when I was pf.
However I do wonder how many other sufferers have done the same thing ? As many will know to go pf after so long is such a relief, the ability to 'get on with your life' such a joy, that I think many would just wish to enjoy the moment.
Of course we still think of all those who, like me, were 'chronic' sufferers and have not had that relapse from the pain, however temporary, and yes maybe we should have hung-in there to offer hope. I don't feel good now about 'retiring', but I guess like many before me I just didn't want to think about the possibility it would ever return
For me the chronic CH's were life changing, I changed from an IT job (which I couldn't hold down because of the CH's) to work for a charity that helped adults with learning difficulties. I used my IT skills to teach them the basics of living in a wired world. As UK members will know, even charities are in recession in the UK, so now no job.
Its obvious that some 'lifers', (one in particular) in this group resent people like me looking for support when needed and feel that we have not 'paid our dues'. So be it. I do not intend to post again, I do not wish to upset anyone else, and I'll cope as many others I'm sure are doing right now, in silence, but at least with some dignity and no bitterness.
TT
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"I came from the future to study the past and got lost in the present"
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Charlie
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Re: Sorry to be back ...
« Reply #9 on: Jan 10th, 2003, 5:42am » |
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Sorry you had a reason to check in. No one should have to put up with this horror.
Maybe you can stick around and check in now and then. It would do everyone, especially you, a lot of good.
Here is Dr. Wright's thing again. Can't hurt:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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suzy617
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Re: Sorry to be back ...
« Reply #10 on: Jan 10th, 2003, 7:01am » |
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Hey T, I think your missing the point. I dont want you to leave. This is the place to come when your in pain which you are, just saying, as Charlie says, when your pf check in once in awhile then maybe you can help others also. I am not showing you the door, I am offering you a chair to sit down and hang with us.
suzy
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When God measures men, He puts the tape around the heart, not the head.
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catlind
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Re: Sorry to be back ...
« Reply #11 on: Jan 10th, 2003, 1:07pm » |
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TT,
You aren't being asked to leave. Quite the opposite.
It's folks like you, that find remission and life again that do give the rest of us hope. It would be great if you would stick around and let us support you and you support us.
It's hard to not want to leave and forget the whole thing when you are PF. But I really wish you would understand the immense level of hope that a PF person brings to those of us still suffering.
When you are PF you find you can live your life again, so maybe your time to be on the site isn't as much as when you are in pain, but a post here and there to let those of us behind know that life can be lived and PF days are out there is a tremendous boost.
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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brain_cramps
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Re: Sorry to be back ...
« Reply #12 on: Jan 10th, 2003, 1:23pm » |
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on Jan 10th, 2003, 1:07pm, catlind wrote:...a post here and there to let those of us behind know that life can be lived and PF days are out there is a tremendous boost.
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couldn't have put it better!
I came and went, but this time I'm not leaving. ;D
Good luck and PFDAN,
grant
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Ree
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Re: Sorry to be back ...
« Reply #13 on: Jan 12th, 2003, 10:20pm » |
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Hell~~ Jonny and crew I know that Dave cringes knowing that Im supporting here when he isnt in cycle... Not because he doesnt appreciate all the help he recieves here but because he likes to forget about them when he isnt in cycle... I have some friends that give me more shit about dwelling in this... Dave is in cycle right now and they think I jinx him... I know I dont... they think I do. They think Internet People are a bunch of Psycho Maniacs... they also think that Daves attacks should go away with excedrine... I dont care what they think... I hang in here to serve the cause... help out and be with family... Our family has become such a part here that I cant be away but a few days without checking in... I know that someday we will see this thing through til there is a treatment that works for everyone. I want to be here when that happens. Not everyone is like those of us that hang, in Cycle or out of Cycle...We wish they were~~~
Welcome anyway... sorry youre back too... stay this time... love ree
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
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RevDeFord
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Pain is real if the neighbors know you have it!
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Re: Sorry to be back ...
« Reply #14 on: Jan 13th, 2003, 7:39am » |
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TT,
I fell into the same thing you are in.....I came back after a year....got flamed - and understood why. That happened back in September or so and I am still here, even though most of the time PF.
Being a Clusterhead aint like going to the store for eggs and milk when you need it. You are part of the store when you have these things, and you need to be there to support people, even when the pantry is stocked up.
My lesson is learned, hopefully yours will be too.
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I don' know why it hurts, but I pray it will stop.
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jonny
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Re: Sorry to be back ...
« Reply #15 on: Jan 13th, 2003, 3:29pm » |
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Man!!!, there you go leaving again.
I see no one asking you to leave.
Now get back in the boat, grab an oar and start rowing this damn boat.!!!
.......................jonny
Hey Rev, nice band, do they do covers or original music? ;D
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Bob_Johnson
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Re: Sorry to be back ...
« Reply #16 on: Jan 14th, 2003, 9:10am » |
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I tried this out of desperation and have found it to be a very effective abortive with consistent and reasonably fast response time.
-------------------------------------------------------------------
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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| « Last Edit: Jan 14th, 2003, 9:12am by Bob_Johnson » |
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Bob Johnson
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cootie
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Re: Sorry to be back ...
« Reply #17 on: Jan 14th, 2003, 10:22am » |
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TimeTraveller....you need a pemanent hanger in this big closet of freinds with your name on it even tho you don't wear a coat everday.....don't let the cob webs build up. Welcome back.........man on man Ree.....what you said rings sooooooooooooooooo true here......."exactly".......and I feel the same way you do about checkin in here wether he is PF or in cycle.....Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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