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Margi
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Re: WOW!
« Reply #25 on: May 4th, 2007, 12:40pm »
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awesome, George!  I have to say, this has been Mike's biggest defense in the cluster battle:  teaching himself to remain calm through attacks. Probably the hardest thing he's ever had to do but he's finally mastered it and his cycles are SO much easier on him now.  Don't get me wrong, they still suck but he just won't allow himself to lose his cool anymore.  Oxygen has really helped him with the process.
 
Getting upset increases blood pressure and it escalates all on its own during an attack anyway.  I think, once he did that math, he really gained ground on the Beast and has renewed faith in himself that he will get through whatever is thrown at him.
 
Timely post, George.   Kiss
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Re: WOW!
« Reply #26 on: May 4th, 2007, 12:41pm »
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Yeah, it's helped me a LOT as well.
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Re: WOW!
« Reply #27 on: May 4th, 2007, 1:31pm »
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MIND?? Heck NO - feed me more!!  I feel like a hungry sponge and I just can't seem to get ENOUGH information  
 
so 'funny' that these were the suggestions
 
you see I kind of felt like a midwife a few nights ago (losing track of time here) using Lamaze techiques to try to help him - complete with the relaxation of each muscle one at a time, deep breathing, focus point somewhere else, etc etc etc  (anyone here whose had a baby or witnessed birth should know what I am talking about - it was all I could think of to try)
it was my first line of defense for him that first night because it was the first time he was having an attack that I KNEW he wasn't going to die and I could focus on something other than death.  He doesn't even remember most of it - too big of a hit , but I just calmly kept speaking to him and tried to keep him focused.  Until I thought my speaking was hurting him, then I just breathed for him.  Tried to will my calmness across the room to him and even pointed my hands out to him like I was trying to cast a magical spell - how silly!
After the attack he thanked me, so I guess on his end it seemed to be of some help - but from where I was sitting it looked useless.  He says my voice didn't bother him that noise doesn't seem to matter one way or the other, and he doesn't really remember most of it - but he always heads to the bedroom at about a 3 or 4 anyway.  So I never know if he is just being nice and doesn't want to hurt my feelings cause he knows I am just trying to help.  
also - he can't stand to be touched during an attack - actually at anything other than a minor shadow.  Once it is apparent to him he is going to have an attack - it is hands off for me.  So holding ice for him isn't working and he jsut can't figure out how to hold it and focus on what he has to do to get through it.  Also - no massaging or rubbing his back or even holding him - jsut sit helpless and watch in horror! And I am not strong enough to keep him from hurting himself so I can't even try. He mostly, though not always, sits with his legs off the side of the bed doing the rocking and leg bouncing and he finds that if it gets real bad - he can't even apply pressure anymore to his eye - so he puts pressure on the 'good' eye and 'thumps' (hits HARD) his stuffed nostril in a rythmic motion in an attempt to 'move' the pain as he tries to describe it to me, convinced if he could get it to drain all the way - or move to the other nostril - that the pain will go away.  He has never been successful but it says it gives him something to focus on.  All the while he looks like he had a stroke in his left eye and it pours gel-like liquid out of it, as does his left nostril and he swears his left ear, too.  He also does this 'clucking' sound in the back of his throat. He used to think his teeth were going to fall right out of his head on the upper left side where the hits occur, so he says the clucking is to keep his tongue from touching them so they don't fall out.  Now that he knows his teeth aren't going to fall out - I think it is just habit - done it for so many years as a way to cope - it is also kind of rhythmic unless the pain peaks then it is kind of an evil grunt.  oh - and he tries rolling his head around like he is going to crack his neck, has even pulled real hard on it thinking that of only he could get it to crack - all would be well.  I used to think he was going to be the first medical case where someone broke their own neck by their own hands.  I guess it is all a learning process
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Re: WOW!
« Reply #28 on: May 4th, 2007, 1:40pm »
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When things are really bad - prednisone!
 
A medrol DosPack stops my attacks instantly.  Take the 1st days 6 tabs and no more attacks for at least the next few days of tapering off.
 
Regular prednison takes 3 or 4 days to stop the attacks but the taper is longer so you are pain free longer.
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Re: WOW!
« Reply #29 on: May 4th, 2007, 1:41pm »
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Erika, as to the ice....get one (actually, we have three) of those gel pack thingies that never really quite freeze.  Keep them in the freezer until he needs them and stick one inside a cloth gift bag or just a tea towel.  Tell him to lay it right on the back of his neck at onset, right over his cluster bump.  
 
My Mike prefers to cluster alone, he usually goes to the basement to sit with the O2 tank and just rests his ice bag on the back of his neck, tucking it inside his collar.  
 
Ice, if used correctly, really can help.  It fools the brain into thinking it needs to rush to warm that area up so it can be a temporary pain distraction.  Or, if he lays it on his face/cheek/eye, it also helps cool that pesky trigeminal and/or vagus nerve.  Also get him to chug a glass of ice water if he can.  Cool him from the inside out.  
 
You're a brave girl to stay there with him, watching him.  A lot of sufferers don't like that.    I always stay within earshot because over the years I've learned to be able to tell when it gets too much for him and he needs a hug, but for the most part, I just let Mike lead and don't try to stay with him.
« Last Edit: May 4th, 2007, 1:43pm by Margi » IP Logged

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Re: WOW!
« Reply #30 on: May 4th, 2007, 2:06pm »
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Erica, just a tip on posts, skip a line between paragraphs, it makes them easier to read.
 
BTW, you are doing a great job, keep it up.
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Re: WOW!
« Reply #31 on: May 4th, 2007, 2:30pm »
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Thank you, Maffu....my old migrainey eyes are having a problem with that too.  Smiley
 
No offense intended Erika, please know that - some of us out here do have probs with screen stuff.
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Re: WOW!
« Reply #32 on: May 4th, 2007, 3:13pm »
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Hi Erika.  I sure am sorry to have to welcome you here.  Your husband and you have had a tough row to hoe, but you have found a home where everyone understands and just that helps enormously.  I'm glad you are soaking up all the information available.  If you need help finding anything, let us know.  There are some world class researchers on this website.
 
Since you don't have insurance, if you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need.  Check them out here:
 
https://www.pparx.org/Intro.php
 
I hope his cycle is winding down and never comes back.  In the mean time, keep reading and asking questions.  Knowledge is power over the beast.
 
Again, welcome home.
 
Mike
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Re: WOW!
« Reply #33 on: May 4th, 2007, 9:03pm »
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Hi Erika. Welcome! Thank you for being here and supporting your husband.
 
You asked about medical info when you don't have insurance. WalMart has a $4.00 generic prescription program - both lithium and verapamil, as well as prednisone are on the $4.00 list.  http://www.walmart.com/catalog/catalog.gsp?cat=546834
 
Lizzie
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Re: WOW!
« Reply #34 on: May 4th, 2007, 9:10pm »
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thank you so much for all of the information
 
And no offense taken - just tell me how to help you help me (ie spaces between long winded sentences/paragraphs, etc) and I'll do it
 
I never relize how long my posts are until after they are already posted - even makes my eyes swim - sorry about that!
 
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Re: WOW!
« Reply #35 on: May 5th, 2007, 9:42am »
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Also - no massaging or rubbing his back or even holding him - just sit helpless and watch in horror!
 
Welcome Erika.  I know the above statement well - I'm a supporter going on 16 years.
 
I can't add anything of substance to what all the others have written, just wanted to pipe up and say hello and most importantly, YOU'RE NOT ALONE.
 
The advice here is spot on - take what works for you and leave the rest.
 
Good luck on your journey. PM anytime.
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Re: WOW!
« Reply #36 on: May 5th, 2007, 12:58pm »
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HI Erika!!!  just hoping theres been alot of useful infromation to you up there!!
 
Im still kinda new so i wont touch the subject with what works yet!
 
I just wanted to comment on the support for your husband!!  thank you for being there for him! You truly dont know how much we appreciate it!
 
Oh yea if if my wife ever reads this i never mean all the nasty stuff i say or do during an attack!!  I try......
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Re: WOW!
« Reply #37 on: May 5th, 2007, 2:05pm »
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Thank you all for your warm welcome.
 
There aren't enough words to express how very grateful I will always be to each of you
 
this society we live in has taught us that most people just look out for #1 with no worries as to the effects some actions have on others.  Not here.  
 
I am humbled and completey amased and FOREVER indebted!!  
 
You are giving us back our life!  You have done more for us than you will ever know!
 
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Re: WOW!
« Reply #38 on: May 5th, 2007, 4:21pm »
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Hi Erica...
 
So....how you all doing today?  Just curious..... Smiley
 
Jackie
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Re: WOW!
« Reply #39 on: May 5th, 2007, 6:22pm »
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on May 5th, 2007, 12:58pm, Kontrolr wrote:
Oh yea if if my wife ever reads this i never mean all the nasty stuff i say or do during an attack!!  I try......

 
We know that, sweetie.  We supporters have pretty tough hides.
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Re: WOW!
« Reply #40 on: May 5th, 2007, 8:32pm »
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on May 5th, 2007, 4:21pm, Jackie wrote:
Hi Erica...
 
So....how you all doing today?  Just curious..... Smiley
 
Jackie

 
 
truthfully?  I feel like I am on a roller coaster......
 
I think we are both in the let down stage that comes after such a high - it is hard to explain I think.  We were both so elated and up about it for the first time, but reality is still what it is and once some of that wore off --- am I making any sense?
 
Don't get me wrong, we are still miles above where we were, but it kind of has a way of smacking you in the face - ya know?
 
The energy drinks seemed to be such a great help at first - not as much now, though they still seem to help with the duration and intensity.  Or since we never kept a diary whose to say it wouldn't have been that way without them.  They just aren't stopping them like they seemed to a couple of times.
 
The extra magnesium is taking a little toll.  I guess because he took so much that first day.  I tried to tell him, so on this he will just have to learn the hard way.  Gotta love him though - stubborness and all!
 
But on the up side - he has slept two nights so far without being awoken by them.  The melatonin doesn't seem to have a hangover effect on him, and so far no ill side effects.  I am not convinced that it is the melatonin that is helping here - but what the heck do I know.  He is only taking 3 mg.
 
still no oxygen - I know don't yell.  It may seem that he is just a glutton for punishment, but that isn't the case.  He just couldn't take everyone's word for the welding stuff being safe to use so he had me do a bunch of research on it.  Please don't take offense,  I didn't even have to admit to that, but I already feel like a family is forming and I one of those that gets myself into trouble all the time for being too honest.  So on that line, we would be fools not to research it.  I hope no offense is taken.
 
We are getting it Monday.  Smiley  
 
ok - rambled enough for now.  I am sure this is another book.  
 
Thank you all again!!  
Erika
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Re: WOW!
« Reply #41 on: May 5th, 2007, 9:00pm »
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I hear what you are saying, Erica....some days are just better than others...hang in there, Sweetie...
 
Oxygen will be your/his best friend.  I'm really anxious for you to get it.  Don't be afraid of the welder's 02....it all comes out of the same tub.... Cheesy
 
Be well....
Jackie
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Re: WOW!
« Reply #42 on: May 6th, 2007, 8:10pm »
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I hear you, Erika.  I was the same freaked out way about welder's O2.  So much so, that I called 911 and asked for Poison Control.  Seriously - do that.  Or better yet, get him to do that.
 
They will tell you it's the same oxygen, welders or medicinal - it's the same grade.  It's just the delivery method that is different.  For Mike, he huffed it through the nozzle on the welding torches and the risk there is tearing lung tissue (but at that point, he didnt' care).  Get a regulator and a mask and you're good to go.
 
Print this post out for your boy.  Let him rest on the experiences of those that have gone before him and lived to tell about it.
 
Hugs to you both.
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Re: WOW!
« Reply #43 on: May 15th, 2007, 2:23pm »
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ok - sorry I have been away so long.  Work had me swamped and unable to use the puter for personal reasons - the nerve, lol
 
I am VERY familiar with huffing oxygen now.  He bought the tank from a welders shop - the tank was a bit pricey, but cheap to refill.  However, we are having a time trying to fit a regulator on it.  
 
I received a GREAT 58 page information booklet on O2 and have been reading it ever since to familiarize myself with what we need and all, but it is harder to find than it seemed.  Medical supply shops won't even talk to us without a prescription and lots of pages I found on the internet won't ship what we want for the same reason.....
 
His headaches are still 'visiting' - unwelcomed!  He is still taking the Melatonin, upped it to 6 mg a night - and the energy drinks - 3 or 4 a night, and the magnesium and b vitamins.  Then he has to huff oxygen - not working too well this way, but he does it anyway.  I am sure once we get the right equipment it will be better, but how do you get the right equipment?  I guess the obvious is 'get it from a doctor' - but no luck in that department yet.
 
I am scared to death to use the toaster in the mornings cause I am afraid the house is still full of some pure oxygen and frankly - that stuff just scares the crap out of me.  So I open up all the windows and wait an hour each morning before I toast anything.  He thinks I am being too cautious but I don't think there is such a thing, lol.
 
not that it is funny - but actually it kind of is.
 
Is anyone else using welder's oxygen and if so, if you could point us in the right direction we love to hear from you.
 
 
Thanks,
Erika (and Bill)
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Re: WOW!
« Reply #44 on: May 15th, 2007, 3:48pm »
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Erika,
 
Have you checked E-bay for regulators?
 
Jackie
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Re: WOW!
« Reply #45 on: May 15th, 2007, 6:14pm »
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http://cgi.ebay.com/BRAND-NEW-OXYGEN-REGULATOR-CGA-540-FITS-H-T-Cylinder s_W0QQitemZ120119850792QQihZ002QQcategoryZ11819QQrdZ1QQcmdZViewItem
 
That is the type regulator that you need.  I am trying to find a "buy one now" listing.
 
Good luck, and O2 is AWESOME !!!
 
Chuck
 
Edited to add:  Here is one that has a buy one now price, AND it has an attached humidifier:
http://cgi.ebay.com/VICTOR-MAI-540-OXYGEN-REGULATOR-REPLACEMENT-JAR-15LP M_W0QQitemZ130114110106QQihZ003QQcategoryZ11819QQrdZ1QQcmdZViewItem
 
EDITED AGAIN to add the link for the BEST mask out there, called a ClustermasxTM.  It is designed and sold by a fellow clusterhead.  He in in UK, but I usually receive my mask within three or four days.  It is $25.00 USD, and worth EVERY penny!
 
Anyhow, here is the link: www.clustermasx.com
« Last Edit: May 15th, 2007, 6:25pm by ClusterChuck » IP Logged

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Re: WOW!
« Reply #46 on: May 15th, 2007, 11:19pm »
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on May 15th, 2007, 6:14pm, ClusterChuck wrote:
[url]
Here is one that has a buy one now price, AND it has an attached humidifier:
http://cgi.ebay.com/VICTOR-MAI-540-OXYGEN-REGULATOR-REPLACEMENT-JAR-15LP M_W0QQitemZ130114110106QQihZ003QQcategoryZ11819QQrdZ1QQcmdZViewItem
 

 
Thank you!!!!!  I just bought it.  
Bill told me to be sure and say thank you from him, too!  
 
We can't wait until it gets here!!!!
 
thanks again - to all of you on here!  
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Re: WOW!
« Reply #47 on: May 15th, 2007, 11:45pm »
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on May 15th, 2007, 11:19pm, Erika wrote:
Thank you!!!!!  I just bought it.  
Bill told me to be sure and say thank you from him, too!  

 
GREAT!!  
 
I can't wait for it either!!
 
Make sure you tell us his results.
 
Bill, you are very welcome!
 
Chuck
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Re: WOW!
« Reply #48 on: Jun 27th, 2007, 4:30pm »
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It has been a long time, but my computer is broken so I have not been able to visit with you guys
 
You have been in my thoughts and prayers everyday though, and not one second goes by that I don't thank my lucky stars for bringing me to you  Smiley
 
Bill is doing excellent!  I wish we had known about oxygen sooner.  Shortly after starting the oxygen - he became totally PF.  Looks like he backed the beast into a corner for now....
 
Here's hoping he stays there for a LONG time.
 
The stuff we bought off ebay fit perfectly and everything works like it should!!!  Thanks again!!!
 
I will be checking back here as soon as I get a new computer.  My office tends to frown upon using the computer for things like this, but I couldn't go any longer without letting you know how we were doing.  
 
Thanks to all of you for your support and all of your years of wisdom.  Our lives have been forever changed for the better and we are now armed to fight back!  And for now it seems we have won this battle in the ongoing war.  
 
Let me know if anyone needs anything.  Or if there is anything I can do to help someone else!!
 
Erika (and Bill)
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