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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> O2 is NOT working Today.....HELP!!!UPDATE
        
(Message started by: luveemom on Oct 8^th, 2007, 3:10pm)

Title: O2 is NOT working Today.....HELP!!!UPDATE
Post by luveemom on Oct 8^th, 2007, 3:10pm

I have had a kip8/9 since I got up today and o2 just isn't working [smiley=huh.gif].......or I should say it has given me very temporary relief......ten minutes and it is full force back again........ >:(.............not sure how much more of this I can handle....losing it :'(............already pounding three red bulls too........

alicia

Title: Re: O2 is NOT working Today.....HELP!!!
Post by E-Double on Oct 8^th, 2007, 3:14pm

breathe and try to chill. it will pass!!

Title: Re: O2 is NOT working Today.....HELP!!!
Post by Saffy on Oct 8^th, 2007, 3:18pm

I am still a little new but have a few ideas.

How about a hot drink, I find a hot drink better than cold. Perhaps just a tea or if you want to keep up the caffiene a coffee.

I find a warm bath helps me to relax and relaxation helps make the pain more bearable.

Try breathing in through your nose and out through your mouth as deeply as possible, breathing out slowly and letting your shoulders relax.

Sorry it isn't the greatest of help.!!!
Thinking of you.

It WILL pass!

Saffy

Title: Re: O2 is NOT working Today.....HELP!!!
Post by mynm156 on Oct 8^th, 2007, 3:43pm

Keep working with all that you have!! we have all been there ice packs hot shower cold shower sometimes I just do anything to try to help!!!

GOOD VIBES HANG IN THERE!!

Your Brother in Pain

MYNM156

Title: Re: O2 is NOT working Today.....HELP!!!
Post by Brewcrew on Oct 8^th, 2007, 3:57pm

No disrespect intended, but you posted this at 3:10 p.m. EDT. You've had this skull-buster headache since you got up. What time was that? If it was, say, 8:00 a.m., that would be over 7 hours. This doesn't sound like CH to me.

If I was going that long on a K8 or K9, I'd be breaking my neuro's door down demanding to know what was wrong with me.

Like I said, no disrespect intended, but maybe something else is going on.

Title: Re: O2 is NOT working Today.....HELP!!!
Post by TomM on Oct 8^th, 2007, 4:08pm

on 10/08/07 at 15:57:17, Brewcrew wrote:

If I was going that long on a K8 or K9, I'd be breaking my neuro's door down demanding to know what was wrong with me.

Like I said, no disrespect intended, but maybe something else is going on.

I agree with BrewCrew here. Might be time to roll into your Dccs office or the ER.
Have you tried putting your face in the freezer?
TomM

Title: Re: O2 is NOT working Today.....HELP!!!
Post by luveemom on Oct 8^th, 2007, 4:09pm

No disrespect taken Brew. Since I wasn't real specific, and I DO INDEED have CH....CHRONIC, I woke up at 8:00 EST, and drank mass amounts of coffee, did my o2 thing got relief for an hour or two, got another hit, went on to hit #2, repeat the above, got relief for half and hour or so, got hit again, and so on and so on......need I say more?????? I have had one day, maybe two if I am lucky PF......I am also taking care of a 7 month old baby by myself right now.....so there is a little tiny bit of stress involved, and not getting a whole lotta sleep. I am taking 200mgs of topamax per night, which has worked before. I haven't been at therapeutic dose all the long now. Redbull, coffee, and o2 usually do the trick........I was getting hit 10 times a day prior......so NO I am not gonna knock down his door...was just looking for some support....I already have a diagnosis but thanks

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Brewcrew on Oct 8^th, 2007, 4:15pm

Maybe it's time to talk to him about trying other meds. Happens to a lot of clusterheads. Something will work great for months or years, then BLAMMO! No dice!

I can better understand your situation now that you've described it in more detail.

Good luck! It certainly can't help caring for a 7-month-old (even though they do provide great incentive find new solutions).

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by luveemom on Oct 8^th, 2007, 4:22pm

Thanks, sorry I am quite cranky right now.....there aren't a lot of other meds for me to try....we may have to ramp this topamax up higher...I don't know....I cannot take any triptans..unfortunately I get cardiac symptoms.....I will not go to the ER....been there done that and it is nothing but pure HELL.....I am just praying it will break...I'm having those lovely thoughts I get when the pain is this bad....ya know the ones about the rope around your neck..... :'(........this shit just sucks

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by southwalessunshine on Oct 8^th, 2007, 4:26pm

I know this is of no help at this exact moment but maybe you need to get some Imi to keep at hand? I cannot stress how much of a life saver this stuff is.
I know the feeling of being left alone to take care of a baby with a real bad hit. you can't control yourself but you know you have to. How I got through those days I will never know, so my heart goes out to you it really does.
I don't think you can do more than you are already are doing. red Bulls, 02 and whatever you have to hand. I hope you come out the other side really soon x

Title: Two Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by TomM on Oct 8^th, 2007, 4:28pm

Hang in there and kick those thoughts assied. Think of your baby.
I understand better and wish you luck.
Try frozen peas or corn on that side of your face, too.
Tom

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Saffy on Oct 8^th, 2007, 4:30pm

You have got your hands full there!

Hope things improve soon.

So sorry you are in pain.

Saffy :)

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by luveemom on Oct 8^th, 2007, 4:47pm

Thanks all, I cannot take Imitrex....if that's what you meant....no triptans at all....I am waiting for hubby to refill the two 02 tanks, he stopped home real quick to do that for me......now I am just sobbing and begging God or whoever is up there to either take the pain or me. I know you all know the feeling...I am desperate...I would never do it...I don't think...but it sure seems like a way out of this hell.....I have no quality of life anymore, I am so depressed from the chronic pain...I just don't know how much more fight I have...tell me I am not alone....others have felt this way? Not just me. I feel so alone right now......no one in my small world here understands this pain....I mean at home...not on this board....my hair hurts....I'm sorry for all the whining and complaining.....I am so beside myself right now..I can't think clearly at all

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Saffy on Oct 8^th, 2007, 5:18pm

WE ALL understand here about CH pain!!! ;)

Wish I could help.

Bye for now,

Saffy

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by lionsound on Oct 8^th, 2007, 8:40pm

on 10/08/07 at 16:47:40, luveemom wrote:

...tell me I am not alone....others have felt this way?

yes I have felt this way. You are not alone.

My hubby travels a lot and that leaves me and my three boys (8, 1, and 12) and my hurtin head all alone ...and it totally sucks! I understand what you are feeling [smiley=hug.gif]

Is there a way you can get a neighbor or family member over to help ... so maybe you can at least not worry about your baby?

Take one moment at a time and know that you can do this!!

PF'S!!!!!
-Rori

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by CostaRicaKris on Oct 8^th, 2007, 11:39pm

I have tears in my eyes reading your posts because I have felt that way! I really hope you are feeling better now!!!

~Kris

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by neetnut on Oct 9^th, 2007, 12:09am

I too feel your pain. Been there, done that!!

One thing I have done that sort of helps, is I sit in front of a fan and let it blow on my face. Sometimes the cool breeze on my face relaxes me and I close my eyes and pretend I am on some remote island. My feet buried in the sand with the ocean waves pounding the shore.

Sounds nice doesn't it?
Like I said, it sometimes help.

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Kevin_M on Oct 9^th, 2007, 12:33am

Quote:

I woke up at 8:00 EST, and drank mass amounts of coffee, did my o2 thing got relief for an hour or two, got another hit, went on to hit #2, repeat the above, got relief for half and hour or so, got hit again,...

Alicia, I very often have the most difficulty with oxygen aborting the hit that comes first thing in the morning, as I wake up. It usually requires a much longer stay on the mask, subsiding very, very slowly, I see you were low on oxygen with maybe thoughts of conserving, coffee or caffeine is of no help for me either it seems and inadequate time aborting will bring repeats soonafter, expecially with some worry. With worry can come some impatience and it can seem the stay on the tank was long enough.
Thoughts of preventive adjustment perhaps at this time for the approximately two hour interval.

Quote:

it has given me very temporary relief......ten minutes and it is full force back again........

Quote:

I am waiting for hubby to refill the two 02 tanks, he stopped home real quick to do that for me...

Being it may take longer at certain times, using more oxygen to abort, you may not have stayed on long enough. I see you were shorthanded and perhaps tried to conserve, running out in fact.
It has several times been posted to stay on a little longer or returns are more likely. Being in short supply, that may not have been possible when it was an important thought to conserve for the rest of the day. You may have a little less worry about that now being refilled.

Quote:

I am taking 200mgs of topamax per night, which has worked before.

My preventive med must vary in dosage a few times a year due to fluctuations and it is only brought to my attention after consecutively waking several times a night, with the morning one being most difficult to abort with oxygen for me.

You have a reinforced supply of oxygen now, see if you can complete an abort with it without the worry of conserving. I tend to be sparing too when low with a day to go or so until delivery but am able to just stop its progress for a bit, buying me those ten minutes or so for a backup n/s trex to kick in. I see you don't have that option.

See your doc about suggestions for adjusting the prevent also, but that may take time to become effective.

Just guessing and my experience Alicia, hang in there and hope best for you. :)

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by ski2k on Oct 9^th, 2007, 7:57am

Hang in there Alicia!!

Yup... We've all felt the pain. I know how it feels to get hit back to back like that. I'm not chronic, but when my cycle peaks, I've been known to get 15 hits in a day, most of them being higher than a kip7. Three or four days like that, one pain free day, then the same again for about a month straight. Sometimes I'll get "lucky" (ha-ha) and only get 3-4 hits in the same day, but those will last MUCH longer.... 2-4 hours. It certainly seems like it's non-stop at that point.

Best wishes, and hang in there!! You CAN do it, and they WILL pass!!

Adam

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Emily on Oct 9^th, 2007, 8:38am

Hey Alicia,

Hang on in there. The suggestions so far have been good - get some help in for the baby so you can solely focus on getting through this, which you ABSOLUTELY can do. Do not let it beat you.

Ice packs and chugging ice cold water help me when I can't think of anything else. Try combining that with the red bull and coffee. You just never know what might work.

I've read (but not tried) about B-12 and melatonin being effective for some. Get someone (ANYONE!) to head to a pharmacy to pick some up if you haven't already tried it. It has to be worth a shot, right?
(Anyone out there tried B-12/melatonin who can give more info?)

Wishing there was more I could do for you. [smiley=hug.gif]

Keep fighting.
Em

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Saffy on Oct 9^th, 2007, 8:47am

Hello,

Thought I would say Hi and are things any better today?

Saffy

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by phil_h on Oct 10^th, 2007, 8:20am

So sorry Alicia , Hope you're feeling and dealing better...... I to can't take triptans...... and I just don't respond to most CH meds....preventive or abortive... OXYGEN is my big gun and it aborts 60% of the time....... It's still the best I got ; along with icepacks,coldshowers,energy drinks and coffee....... Sometimes the 40% failure rate may come up to a day and a half.......... it sucks. I chart all my hits and responses to O2..... It helps me see that this too shall pass...... O2 failure for 2 days and I go to ER and beg them to help.............. I just feel safer thier while the pain is so out of control.......... They give me 25 lpm in short blasts til I abort ............ Oxygen still works the best for me most of the time............ I admire your courage posting in the midst of such a bad set.... I go silent and under a rock.............. When I go to ER , I present my emergency card that indicates the 25 lpm may abort , it also tells them what I shouldn't take........... Wishing you relief......... phil h

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by E-Double on Oct 10^th, 2007, 9:07am

read up on olanzapine/zyprexa since you can not take triptans.

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by luveemom on Oct 10^th, 2007, 10:09am

Thanks you all so much for being here for me :'(
I sat in my car for a while with the air conditioning on full blast on my right eye and it felt so wonderful......a trick I have done before....but not usually for a kip9-10......my face felt like ice but I didn't care.....it was taking the pain away! I feel a little better today, afraid to even say those words cause I have terrible shadows... >:(........which just tell me he's lurking and waiting to pounce on me.....my hubby is home today, so I have childcare and am armed and ready to fight.....your words,care and concern really help pull me through...more than you know....
Thank you ALL from the bottom of my heart

Alicia

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Polly_C on Oct 10^th, 2007, 10:11am

Hey Luveemom,

Okay, here's my help: I find when 02 isnt doing it for me that an ice pack really helps but it has to be deep frozen to really get through. The other thing I wanted to share was the experience of looking after babies and coping with CH (slightly stressful is putting it mildly!). Im a mum with CH too So I know EXACTLY what you're going through and feel for you completely. My son is nearly 10 months old now and though things are getting better - Im no longer breastfeeding so I can use drugs besides 02 BUT - Im still in cycle since Aug 2006 am chronic and have had a HELL time. Are you still breastfeeding? If not then I would recommend you ask your neuro to prescribe other suitable CH medication besides 02 - it's only an abortive and you may benefit from a 2-pronged treatment approach like sumatriptan and 02 - that's what I do.

Hang in there & HUGE respect. Get in touch by PM if you'd like to chat more.
Best,
Pol

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by luveemom on Oct 10^th, 2007, 10:21am

Hey Polly,
Thanks for the reply. I stopped nursing at 2 months when CH's started. I can't take any triptans.

Thanks
Alicia

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by TomM on Oct 14^th, 2007, 5:50pm

on 10/10/07 at 10:21:50, luveemom wrote:

I stopped nursing at 2 months when CH's started.

Waaay out of my area of expertise but I do understand the feelings of depression related to CH...only too well.

Have you tried sticking your head in the freezer to help with the pain??? Have you contacted Polly? Sounds like she has been there and give you great support.
The first step to prevent hurting your self is telling someone. I always do that by telling my wife to lock the guns and hide the ammo. I am serious.
E-mail me if there is anything else I can do to help.

TomM

Title: Re: O2 is NOT working Today.....HELP!!!UPDATE
Post by Miz_D on Oct 14^th, 2007, 11:54pm

Hi Luveemom,

I'm a chronic also and 02 rarely works for me, can only use it to keep me sane until other meds kick in.

Car airconditioning has saved my butte lots of times and I carry a little hand fan everywhere I do...looks a little old fashioned and kind of funny buy hey, CH & menopause? Its totally work looking a little silly!

My thoughts are with you.

Danielle