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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> BAD Monday - 02 "failure" - Water
        
(Message started by: RichardN on Apr 23^rd, 2008, 7:31pm)

Title: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 23^rd, 2008, 7:31pm

I waited until today to post this, as I wanted to see if I couldn't get him back under control.

Though I used to use (successfully) Verapamil as my preventative, for the past four years I have relied on water treatment (see "water X 3" . . link on left), which became mandatory for me due to other medical issues.

Well, the last week or so I slacked-up on the water (just got busy with yard, garden, other projects) . . . and wasn't constantly sipping on my (1/2 gal.) insulated mug. Decreased my consumption to about half normal intake. . . . . MISTAKE!

Got hit Saturday with a few (aborted with 02) minor attacks, that night with a couple (no higher than Kip 6) . . 02 to abort . . . Sunday, more minor hits, Sunday night . . . one an hour after falling asleep, another (Kip 7) at 3am (killed in 12 min with 02), then woke with one Monday morning. All damn day Monday never was far from my tank . . . . shadows constant . . . three bad hits . . . two Kip 8s and one Kip 9 Monday evening . . . all at least 30-35 min . . . the Kip 9 40 min. I of course was huffing the 02 like mad (with Clustermasx) . . . . but he didn't seem to care. I put "02 failure" in quotes because I have to assume . . . with the success I've experienced with 02 that they would have been Kip 10s and longer if I hadn't used it.

Monday night was the first night in a long time that I was afraid to sleep, but too exhausted not to. Woke hurting yesterday morning (4 am), more sore than anything . . . didn't really feel like an attack, rather like I should have been able to see the bruising on my (right) temple, eye, neck from the previous night's Kip 9. Third cup of coffee eased the temple, eye & neck stayed sore most of morning. Rest of day just a couple of low level hits easily killed with the 02 . . . no hits last night . . . none this morning.

Of course I realized I'd set myself up for this . . . and Monday was slamming down the water like I should have been . . . and continue to do so . . . back to "normal" for me.

Today, no attacks . . . very slight shadowing. I'll continue to recommend water treatment . . . with the caveat, "it's NOT easy to do.

Be Safe, PFDANs

Richard

Title: Re: BAD Monday - 02 "failure" - Water
Post by DennisM1045 on Apr 23^rd, 2008, 7:58pm

I'm sorry to hear it Richard. Verapamil has been a savior for me this cycle and if I miss one dose I'm in for one to three days of hell.

Our treatment plans are hard to stick to. I can identify with feeling great and forgetting to stick with the plan. It's all too easy a trap to fall into.

Don't kick yourself too hard. The beast already did that. I hope tonight is PF for ya.

-Dennis-

Title: Re: BAD Monday - 02 "failure" - Water
Post by Annette on Apr 23^rd, 2008, 8:34pm

Sorry to hear the beast snuck in past the oxygen there Richard ! However, I am glad the water treatment works again.

Painfree wishes to you :-*

Title: Re: BAD Monday - 02 "failure" - Water
Post by kevmd on Apr 23^rd, 2008, 10:46pm

Rich
Don't give up on the o2. I'm sure you know that. I had a period of o2 failure or lack of effectiveness. For about a week, I had to go from push ups to the o2, back to push ups and so on til I fought the SOB away. I am betting I did abut 2,000 push ups that week. Hope you get back to being PF

Title: Re: BAD Monday - 02 "failure" - Water
Post by nani on Apr 24^th, 2008, 12:12am

Oh, man...that's awful Richard. :(

I can't really say I do the WWW treatment, but I normally drink lots of water. When the weather warms up, I find that if I don't carry some everywhere and stay hydrated, I can get an unwelcome surprise.

Hope things stay manageable and improve from here.

hugs, nani

Title: Re: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 24^th, 2008, 12:47am

Thanks for your concern guys. All's well and I don't expect any visits tonight (none that won't be easily handled even if he comes).

Perhaps I need a real dance on occasion to remind me how bad they can get . . . and to keep me following the regimen that usually keeps me from the dance.

Took me back to the days before coming here, before Verapamil and 02 . . . and that very real FEAR of the beast.

Thanks and PFDANs to all.

Be Safe,

Richard

Title: Re: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 24^th, 2008, 10:54am

Update on last night

I hit the sack right after my last post . . . was about to nod off when he decided he wanted a rematch at 1:05 . . . sat up, started hitting the 02 . . . he ramped to Kip 6 very quickly, so rolled my cart to the kitchen for an ice pack . . . huffing the 02 non-stop . . . killed the bastard in 8 minutes.

Rest of the night . . . good sleep.

I'm back in control :)

Be Safe,

Richard

Title: Re: BAD Monday - 02 "failure" - Water
Post by brewcrew on Apr 24^th, 2008, 10:58am

on 04/23/08 at 19:58:54, DennisM1045 wrote:

Verapamil has been a savior for me this cycle and if I miss one dose I'm in for one to three days of hell.

Why is it that verapamil takes 10-14 days to ramp up to theraputic levels, but miss one damned dose and WHAMMO?

Things that make you say "hmmmmm...."

Title: Re: BAD Monday - 02 "failure" - Water
Post by kcopelin on Apr 24^th, 2008, 11:33am

I wonder sometimes, when I have high level hits-out of the blue nothing works-if it isn't a reminder not to become complacent. I'm so glad you got it back under control, sorry you had to go through hell again.

You have convinced me to really try the H2O treatment.

PFDAN
kathy

Title: Re: BAD Monday - 02 "failure" - Water
Post by DennisM1045 on Apr 24^th, 2008, 12:13pm

I'm glad to hear the O2 is doing its job again Richard.

on 04/24/08 at 10:58:45, brewcrew wrote:

Why is it that verapamil takes 10-14 days to ramp up to theraputic levels, but miss one damned dose and WHAMMO?"

I'm using the immediate release formulation and think that has something to do with it. It is weird...

-Dennis-

Title: Re: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 24^th, 2008, 1:10pm

Thanks Dennis . . . me too!

Re your Verapamil. Before I stopped taking it, I was using Verapamil 240mg CR Tabs (generic for Calan SR 240mg) . . . our wonderful blue tablets. At one point, my doc transferred elsewhere and the new doc changed me to the "new" Veralan (sp?) . . . capsule form of Verap . . . didn't work near as well as the former, and I only used one script of same . . . not only was it less effective, the out-of-pocket cost was $114, four times what I was paying for the generic. My personal take on this is that being a "new" delivery system . . . they could jack up the price.

Be Safe, PFDANs

Richard

Title: Re: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 24^th, 2008, 2:58pm

Kathy

Re water treatment. First off, continue taking whatever prevent you're using . . . and see if the WWW can greatly reduce or eliminate the attacks before you consider quitting your preventative.

Also, you have to really watch those conditions that reduce your water intake . . . like a flu bug or other illness which puts you down . . . if you're sleeping . . . you're not drinking.

Last year a friend (and surveyor) was helping me define my property lines on our woods property. Difficult to carry machete, surveying equipment AND water jug. Went almost seven hours with minimal water. That night got slammed and set-off a couple days of attacks (not as bad as Monday . . . but definite reminder)

A few months ago had day-surgery to replace port-o-cath. Impressed upon my surgeon I was concerned about the possibility of attack because of the normal, "nothing to eat or drink after midnight" directive, and that I would require 02 available (with proper mask & flo-rate) in the event of attack. Surgery was supposed to be at 9:00 am. Another (emergency) surgery postponed my procedure til after 12:00. Shortly after waking in post-op, able to focus but still non-verbal . . . felt him coming . . . I started rubbing my temple . . . the post-op nurse was immediately there, strapped on the (non-rebreather) mask (I immediately removed the strap . . .habit) and started the 02 . . . 15 lpm. Never got bad, didn't have to sit up, and killed him in 5-7 min., signaled the nurse to turn off the 02 (held onto the mask . . . just in case). She probably wondered what the fuss was about . . . but could have been a bad scene if doc's orders hadn't been followed. It is a possibility that the attack was triggered by the anesthetic . . . but from my perspective it was lack of H20.

Please let me (and others) know if it works for you.

Be Safe, PFDANs

Richard

Title: Re: BAD Monday - 02 "failure" - Water
Post by LeLimey on Apr 25^th, 2008, 4:29am

I'm so glad you got it back under control again Richard and also that you continue to post your experiences which are such a help to the rest of us.

I drink fluids constantly through the day too and I agree that if for whatever reason I have to drink less then I can guarantee shadows at a minimum.

They say 80% of "ha's" (normal ones) are due to dehydration so it stands to reason that it can only help us too!

Title: Re: BAD Monday - 02 "failure" - Water
Post by RichardN on Apr 26^th, 2008, 12:30am

One small hit last night (1:00 am again) . . . 5 min on the 02 and slept rest of night . . . very minor shadow on waking . . 02 not necessary . . . morning coffee took care of it.

Joyful day fishing and four-wheeling with grandson (and puter' geek) Alex (age 10) . . . an excursion that the beast canceled Monday.

The ability to do this reminded me of the year before coming here, getting a name-for-the-pain and the info/ammo to live again. That entire year I was afraid to take him to the woods or anywhere for fear he would witness my death from what HAD to be a life-threatening condition (stroke, tumor, aneurism) . . . anything that hurt that bad, that often, I assumed had to be something that would kill me.

Thanks again DJ . . . and this wonderful family.

Be Safe, PFDANs

Richard