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Who is who here to the newcommers (Read 84975 times)
Guiseppi
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Re: Who is who here to the newcommers
Reply #625 - Jul 13th, 2010 at 10:36am
 
Welcome to the board Brian. Damn....you've been down sh%$ road. Cry I only have a couple suggestions. I can't tell from the picture but just want to confirm that is a Non Re Breather mask you're using, and confirm you use a flow rate of at least 15 LPM with a regulator that could go up to 25 LPM if needed. Read the oxygen info link on the left as HOW you use the 02 is critical to its success.

Consider adding the following daily supplements to change your arterial PH to make you less succeptible to attacks. Magnesium, Calcium with Vitamin D and Zinc, washed down with lemonade. You can read a few of the posts by Batch if you're interested in the science behind this regimen. 02 stopped working for me this cycle and Batch suggested this regimen to me. 36 hours later the 02 was working for me. Needless to say I'm convinced!

Then go to     clusterbusters.com       it's an "alternative" treatment for CH with a strong network of supporters.

Keeping you in our prayers, the good news is you're not alone anymore and we inderstand exactly how much you're hurting.

Joe
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Re: Who is who here to the newcommers
Reply #626 - Aug 25th, 2010 at 4:47pm
 
From what I have read thus far, I have you beat for fighting the demon. 40 years this month of headache suffering. I am 58. Back in my day (LOL) they didn't have any clue about Cluster was never fun but was less so back then. Verapamil, Lithium, and Mythergine works for me, but having a tough time this cycle which started mid August. Heard same timing for a lot of folks as well. 02 works as well. Heard something about pressure valve therapy - not sure what that's about. Had a ONB 2 years ago with great result - not some much this time. New Dr. I think it's the Dr and the skill/technique that makes a difference. Just found this site and find it very helpful. Thx
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Guiseppi
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Re: Who is who here to the newcommers
Reply #627 - Aug 25th, 2010 at 5:40pm
 
We're glad you found us! Used to hope I'd grow out of them...then met people on this board in their 70's still getting hit!

Not sure about pressure valve therapy????? maybe demand valve? It's what i use, similar to a scube set up, when you suck, it releases 02! No worries about out drawing a set regulator.

Joe
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Re: Who is who here to the newcommers
Reply #628 - Sep 1st, 2010 at 7:33am
 
Hi there, first time user , long time suffer, well for the first year I was missed by the doc as he thought it was hayfever, I'm 36 single, and a carer for my elderly mother, its sad to say I am happy that there are people out there who suffer as well, I don't want sympathy just to be able to talk to some one who knows what I am going through, I had to give up work to look after my disabled mother, but the stress of this seems to bring it on more, I am on my 7th headache today, and I am down to my last 2 sumatriptan, I am having a MRI Scan later today I hope I have a relapes during the scan as then maybe people will take notice.
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Guiseppi
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Re: Who is who here to the newcommers
Reply #629 - Sep 2nd, 2010 at 2:22pm
 
When you get a chance tell us what you've used for abortive and preventative treatments. Have you tried oxygen yet? Cheap, just as fast as imitrex injectables for me and no side effects! Read the oxygen info tab on the left to see the process! Glad you found us. Wink

Joe
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Re: Who is who here to the newcommers
Reply #630 - Sep 27th, 2010 at 3:24am
 
Hi,
Rob from chicago here! Been a sufferer since 1983! 40 now and still learning. Was pain free for 2 years, then 9-24-10 the devil returned. Just nice to know there are people here that are not so judgemental of our condition. 2 wonderful children (18,12) and a wife that that after 18 years still does not understand. And to any new sufferers please do not underestimate hte depression side of this! Has almost finished me 4 times... Anyway thanks for the vent and please take care.

Rob
robertingram1970@hotmail.com
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Guiseppi
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Re: Who is who here to the newcommers
Reply #631 - Sep 27th, 2010 at 9:12am
 
Welcome to the board Rob, glad you found us! Try and get the other half to check out the supporters board. Been a great source of comfort and information for my wife. It's a good place for those that support us to hang out and bitch ab out what a pain we can be, and learn coping mechanisms.

Depression, yeah, we talk about that a lot. Given the level of pain we endure and sadly, the sense of isolation many feel, it's not suprising depression can rear it's ugly head. Another benefit of the board, you're never alone!

Joe
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Re: Who is who here to the newcommers
Reply #632 - Sep 28th, 2010 at 5:09pm
 
I feel like a bit of an imposter here - I'm a new CH sufferer - I've been having them for only around 10 days, so I have no idea if I'll have a pattern of symptoms, or just a limited amount of nightly attacks and daily shadows.

I saw my doctor on Monday after a particularly bad weekend, and was diagnosed straight away.  I thought that my symptoms were really unusual, but obviously not - I was comparing CH with migraines, but they were so different that I thought it must be something different.

Luckily, I had already got a supply of Zomig, which helped deal with the pain to a certain extent prior to diagnosis, and now I've got the nasal sprays - nasty aftertaste but kills the unbearable pain within 10 minutes!

When I got home from the doc and googled CH, I was amazed by just how accurate the symptom description matched my symptoms - and then terrified for those who have gone undiagnosed for so long when I've had it so easily identified!  Not knowing what it was was, frankly, terrifying - finding out what it was made me hugely relieved.

Who knows how it will develop - I'm 36 years old - but it is reassuring to know that there are others that have experienced that diabolical pain.
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Guiseppi
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Re: Who is who here to the newcommers
Reply #633 - Sep 28th, 2010 at 6:20pm
 
Not an imposter, a fortunate sufferer! Wink Glad you got diagnosed so quickly, many do go years and years, have teeth pulled, sinus surgeries, lots of horror stories! Pull up a seat and start learning all you can. Knowledge is your greatest ally in the fight with the beast. No matter how well your current treatemnt is working, have 2-3 back up plans ready. One of the more common traits of the beast is his ability to morph. What works great this cycle, doesn't work the next cycle!

Glad you found us, welcome home!

Joe
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Re: Who is who here to the newcommers
Reply #634 - Oct 3rd, 2010 at 6:35pm
 
Lauren, supporter. My husband, Lucas, the sufferer. Together for 12 years this April, married for 6. Two beautiful daughters age 4 and 18 months. His episodes started at 19 or 20, so around 15 years. This is first cycle we've been on the site, what a relief to be here, we never want to leave. Hate to admit but we found the site the last cycle but couldn't get past the horror stories on the main page. They seemed so hopeless, which is where we already were, that we didn't enter the site. How I wish we had! this is a place of help and hope. I have debts to pay forward now for all the help we've received.
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Re: Who is who here to the newcommers
Reply #635 - Oct 3rd, 2010 at 11:09pm
 
Interesting comments about the horror stories on the first page of the web site. Maybe you could suggest what you'd like to see there. After all, if it put you off then it may have put others off too.
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Guiseppi
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Re: Who is who here to the newcommers
Reply #636 - Oct 4th, 2010 at 10:10am
 
Welcome to the board lauren! My wife found the olod version of this site for me many years ago and saved my sanity! Thanks for being a supporter, you guys are golden! Smiley

Joe
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Re: Who is who here to the newcommers
Reply #637 - Oct 5th, 2010 at 12:28pm
 
Thanks guys- you all have been lifesavers!

As to the horror stories- they serve their purpose, right? Weeds out the people who don't in fact have clusters. To people who do it's like Yes- that EXACTLY! But it doesn't convey the real and tangible help there is to be received here. I think the addition of a story about how oxygen helped, or a 3am post from someone can be a lifeline, etc would be a good addition. Or even a statement saying something like- (I don't know, I tend to have a flair for the dramatic) "Abandon hopelessness, all ye who enter here! " Just something to convey that those horror stories are your pre-clusterheadaches.com condition, after is a different ball game altogether. Just this newbie's thoughts.

(I'll be posting updates again soon- been limited to an Iphone for 3 days- typing on that thing was torture. Still kept reading the site though.)
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Re: Who is who here to the newcommers
Reply #638 - Dec 11th, 2010 at 3:58pm
 
New to the site, but certainly not new to CH. I have suffered for 26 years with episodic cycles. Cycles occurring annually for about 4 months in duration, 3-5 headaches daily, mostly at night. CH and I have developed a very intimate relationship over the years. I know my beast so well I can damn near predict when he will make his annual appearance and almost precisely what time everyday I can expect to see (or feel) him. Imagine, all this time and I still cannot welcome him with open arms. It is a love hate relationship I suspect... he loves me and I hate him.

I am a 41 year old female who was plagued at 15 with these God awful headaches. Like so many others, it took 6 years, some not so pleasant "procedures" (the wisdom teeth removal, the deviated septum cure, etc), the thinking "am I crazy?", and several doctors later to diagnose them as CH. I have been on every med in the book with varying results. What works one time, may not work the next, and so on.... very familiar story for all I'm sure!

Funny thing is, between cycles I have a tendency to forget about the beast, then once he returns I become "obsessed". Obsessed in understanding them, obsessed with WHY, obsessed with them taking over my life. I am about 4 weeks into a full blown cycle now and in my quest for answers, stumbled upon this site...

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Re: Who is who here to the newcommers
Reply #639 - Dec 11th, 2010 at 4:56pm
 
Welcome DW and I'm sorry the beast came knocking again, at least you knew to be ready with ammo in hand.

Stick around read all you can and check out the O2 page if you are not already using it.  Stick around even when not in cycle maybe you'll be able to help someone else deal with him.

Sending PF vibes your way.
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Re: Who is who here to the newcommers
Reply #640 - Dec 21st, 2010 at 9:23am
 
Smiley HI, I'm 38 been a member of the CH'S for a long time. Don't know anyone who also is so i looked and found this site. It is nice to know i'm not alone and to have a place like this to listen to how others deal with this.
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Re: Who is who here to the newcommers
Reply #641 - Dec 21st, 2010 at 9:50am
 
And we're danged glad you have found your long lost family! Smiley

Jump in with both feet, let us know what you've used that has and hasn't helped. The strength of this board is the combined thousands of years of real life experiences. Maybe you'll drop a new pearl on us, maybe we can make some suggestions to take back to your doc to make your journey a little less painful.

And if you're not already using 02 succesfully, read the 02 link on the left. It's sweeping the boards with its success rate. Welcome Home.

Joe
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Re: Who is who here to the newcommers
Reply #642 - Dec 30th, 2010 at 11:12am
 

Hello all....I'm new here,but not new to ch's,I've been dealing with them since I was about 15,I'm 53 now.I have seen them go from being just very painful to completely dibilitating. The time between episodes have increased,THANK GOD, but also the the intensity of the pain and the duration of the episode has increased.My last episode lasted exactly 6 weeks to the day.Imetrix,did absolutely nothing for me,I mean 0 help.Fireocet did work for me a few times,stopped the ch in about 15 mins.,but the last time I tried it,no good.I don't drink,(anymore),but when I was young and I would drink a beer,it triggered a ch.I learned to take a bc powder or two with my first beer to keep it from getting started.That got me to start taking bc's when I first feel them coming on and they would ward them off.I do smoke,trying to quit,been smoking over 40 years.I read here why pot isn't suppose to work for ch's,but I have heard of and know people that it does help.I don't smoke pot (anymore).Why some things work for some and not others?I don't know.But I do know that if your pain associated with ch is as intense as mine and you find something that stops it,you don't give a hoot about what anyone has to say about it
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Re: Who is who here to the newcommers
Reply #643 - Dec 30th, 2010 at 11:54am
 
Savd4eva wrote on Dec 30th, 2010 at 11:12am:
Hello all....I'm new here,but not new to ch's,I've been dealing with them since I was about 15,I'm 53 now.I have seen them go from being just very painful to completely dibilitating. The time between episodes have increased,THANK GOD, but also the the intensity of the pain and the duration of the episode has increased.My last episode lasted exactly 6 weeks to the day.Imetrix,did absolutely nothing for me,I mean 0 help.Fireocet did work for me a few times,stopped the ch in about 15 mins.,but the last time I tried it,no good.I don't drink,(anymore),but when I was young and I would drink a beer,it triggered a ch.I learned to take a bc powder or two with my first beer to keep it from getting started.That got me to start taking bc's when I first feel them coming on and they would ward them off.I do smoke,trying to quit,been smoking over 40 years.I read here why pot isn't suppose to work for ch's,but I have heard of and know people that it does help.I don't smoke pot (anymore).Why some things work for some and not others?I don't know.But I do know that if your pain associated with ch is as intense as mine and you find something that stops it,you don't give a hoot about what anyone has to say about it

Maybe stick around and read.  Oxygen does the trick.

             Potter
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Re: Who is who here to the newcommers
Reply #644 - Dec 30th, 2010 at 12:05pm
 
Just curious Savd on the Imitrex. Were you taking the nasal, pills or shots? I know the nasal did not help my husband but a shot will abort the CH almost immediately.

Also have you been prescribed oxygen at high flow rates? Check on the info we have posted to the left on that, and take to your neuro.
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Re: Who is who here to the newcommers
Reply #645 - Dec 30th, 2010 at 1:12pm
 
Welcome to the board! yeah the pills and the nasal spray didn't help me, but the shots worked fantastic. Oxygen on the other hand, has all but eliminated my use of imitrex. 6-8 minutes of huffing 02 and I am pain free. Read the oxygen info tab on the left as it must be used correctly or it won't work. Been  a life saver for many on the board, cheap, fast and really effective!

Joe
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Re: Who is who here to the newcommers
Reply #646 - Dec 30th, 2010 at 4:34pm
 
QnHeartMM wrote on Dec 30th, 2010 at 12:05pm:
Just curious Savd on the Imitrex. Were you taking the nasal, pills or shots? I know the nasal did not help my husband but a shot will abort the CH almost immediately.

Also have you been prescribed oxygen at high flow rates? Check on the info we have posted to the left on that, and take to your neuro.

I keep hearing about an O2 tab on the left,I have yet to see this tab or any other tab on the left or right
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Re: Who is who here to the newcommers
Reply #647 - Dec 30th, 2010 at 4:54pm
 
Savd4eva wrote on Dec 30th, 2010 at 4:34pm:
QnHeartMM wrote on Dec 30th, 2010 at 12:05pm:
Just curious Savd on the Imitrex. Were you taking the nasal, pills or shots? I know the nasal did not help my husband but a shot will abort the CH almost immediately.

Also have you been prescribed oxygen at high flow rates? Check on the info we have posted to the left on that, and take to your neuro.

I keep hearing about an O2 tab on the left,I have yet to see this tab or any other tab on the left or right

If you are using Firefox or another Tabbed browser the reason you do not see the menu bar on the left is the way you bookmarked the site or the way you are opening the links to forum posts.
Click this Link Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register to open the forum site properly and view the link menu to the left. Cool
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Re: Who is who here to the newcommers
Reply #648 - Dec 31st, 2010 at 3:49pm
 
Ah yes, some of us don't have the links on the left based on our current view. Here you go, I went and got it for you

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Re: Who is who here to the newcommers
Reply #649 - Jan 19th, 2011 at 7:23am
 
Hi to you all,
First timer Tomsk here.
Although, I've had CH for over 15 years now, only just discovered this site -  what wonderful support and so good to know there are many others out there going through the same shite as me.
Mine seem to come and go, sometimes it's a couple of years between, brought on by stress or major concern (job, love life) , but when they hit - oh boy!! Always the same place (left side, behind my eye), a pattern will follow, same time, middle of the night / day for up to four weeks. Going through a series of the bastards at the moment, hence me looking online for help/support. When I was diagnosed (many years ago) I was prescribed C0-proximal? They helped if I took them when I had early symptoms. Apart from those then I've only ever taken off the shelf paracetamol etc.. Never been one for pills really anyway - I normally try and ride the pain out, on my own somewhere dark, quiet. My girlfriend is trying to understand, showing her this site will go some way in her helping her do that.
Feels good just writing and sharing my feelings with others that can totally understand what I'm going through.
Keep up the good work you guy's, take it from me- a newy, it really does help!
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