I'm sick and tired of hurting!!!  I'm going to try a Redbull (or Rockstar if they have it) for my next attack.  Just got over one and am wiped out. :( :( :(

I am nervous about one thing though, and that's the caffeine.  I don't drink caffeine out of cycle and limit caffeinated coffee to when I have attacks.  I'm a bit scare of jumping out of my skin, but I can't take the pain anymore. :'(

So sorry, Mel.

Maybe just pound down 1/2 of one and see if it helps. Don't need ya bouncing all over the boards now, do we!

I was wondering if my heart was just gonna blow up last week.... drank 7 one day. Was in so much pain that i really didn't even notice if it made me hyper.

Hope you get some relief SOON!

Adam

  I suggest Monster Loca Moca it tastes good not like Red Bull [smiley=hurl.gif] and the Loca Moca is not carbinated so you can leave it open in the fridge and it doesn't go bad,  you can even separate it before you are having a hit for you Mel 1/3 of a can will probaly do.
  Hope this passes for you soon.
           Phil 8-)

[smiley=hug.gif] [smiley=heart.gif] :'(

Joe

Mel,

O2 not working?

Mel - Might I suggest NOS. Comes in three flavors: original (passionfruit), fruit punch, and grape. I'm partial to the original myself. Good dose of caffeine and taurine.

Marc wrote on Feb 3^rd, 2009 at 5:38pm:

Mel, O2 not working?

Not like it has in the past Marc.  Only kills 70% of my attacks, I've had to be on it longer, some for 30 min. and I just end up waking up 45 minutes later with another one unless I decided to ride it out (which SUCKS), then I'm able to sleep for 4-5 hours.

I'm not sure if I'll do the energy drinks just yet.  I'm contemplating a few things right now, like trying to get my cycle to regulate itself with just trying one thing for awhile, per a friends suggestion.

I hate these things, when I'm getting hammered so often and with such intensity, I tend to want to try EVERYthing out of desperation! :(

Brew wrote on Feb 3^rd, 2009 at 5:39pm:

Mel - Might I suggest NOS. Comes in three flavors: original (passionfruit), fruit punch, and grape. I'm partial to the original myself. Good dose of caffeine and taurine.

 For some reason I thought NOS didn't contain as much Taurine :-?,  Monster has 2000mg per can.

Mel  [smiley=hug.gif]

You are med free right Melly?  Be careful mixing energy drinks with Taurine supplements.  You don't want to dump too much Taurine into your system.

Have you talked with Pete about how you use O2?  It might be worth a quick conversation.

Failing all that  [smiley=hug.gif]  I'm right with you sister...

-Dennis-

The specific advice I was looking for from Pete is here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The PH of your blood can hurt or help O2's effectiveness.

-Dennis-

Sorry about your hits, I understand what your feeling. I just wish i could help. Coach Bill

Thanks everybody!!

I think I have found what may be causing this cycle to be so brutal and out of whack.

Thread here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

wrote on Feb 3^rd, 2009 at 5:46pm:

Brew wrote on Feb 3rd, 2009 at 5:39pm: Mel - Might I suggest NOS. Comes in three flavors: original (passionfruit), fruit punch, and grape. I'm partial to the original myself. Good dose of caffeine and taurine.  For some reason I thought NOS didn't contain as much Taurine :-?,  Monster has 2000mg per can.

Each 8 oz. contains 1000 mg of taurine and 130 mg of caffeine. It comes in 8 oz. bottles, 16 oz. cans, and 22 oz. bottles. They also have a Powershot available now.

wish I could take one for you

Dennis- yes I am med free.  I'm not even taking the Taurine supplements anymore.  In fact, I am taking nothing but a Relpax after my 2nd attack of the night, as then I can sleep until 5am or 5:30am.

Thank you Kev. :'(


Well, since I was begging God to take my life last night (also ran out of O2 in the tank about 10 min. into huffing), I'm going to try the energy drink tonight.  I have to try, because this is ridiculous the amount of pain I'm enduring.  I have no clue when this cycle is going to end.  I thought it would run it's 40 day course, but that would mean it'd be over by Feb. 15th.  But after everything I've experienced, I'm not going to get my hopes up. :(

I'm having the same problem right now. O2 kills it, but they come back every 60-120 minutes all night. This is a typical pattern for me when get into a high cycle.

When the first one hit at 11:30 last night, I chugged a Monster energy drink (20 calories) with 2,000 mg of Taurine. As usual, the O2 killed the hit, but they still came back on schedule.

I tried a second Monster at 3:00AM, but I was back on the O2 at 4:00AM.

Hope it works for you. Are you getting more O2 immediately?

Thanks Marc!  My husband hooked up my last tank after the one ran out, only I had him do it after the attack was done.  I had had a Kip 10, and even if I had woke him to hook it up right away, I already knew nothing was going to touch it.

This tank will get me through the next 2 nights, and I am swapping the 3 empties tomorrow during my run to town.

I'm so sorry you're experiencing what I am.  It's one thing to kill them quick, but when you have to do it so often, it's like which is worse?  Waking up so much or riding one out just to get some sleep?

The beast is a bastard. >:(

Being the chicken that I am, I'll never willingly ride out a K10.

If I could be sure that a particular hit wasn't going to escalate, I'd do it in order to get some precious sleep. But in 12 years of being chronic, I've learned something about Murphy's Law: "Murphy was an optimist"

Perhaps I'm just not as tough as I once was, but I just can't take a true K10 anymore.

Hoping you don't have to either!

AHHHHH!!  Sometimes life likes to play with me!!!

Called my O2 provider to double check that there wouldn't be a problem swapping my tanks tomorrow.  Here she said they hadn't heard a thing from my docs office and that there was no new scrpt.  WHAT????

Call the docs office, waited for the nurse to call me back.  Nervous as all hell!  The nurse called me back about 30 min. later saying they faxed the damn script yesterday.  Cripes!!

Call the O2 provider back to let her know, says she didn't see anything, but that I'm clear to swap my tanks.

OHFORPETESAKE!!! :P ::) :D

Glad to hear you're getting the 02 Mel.  Hope you get a break soon!

Hugs,
Beth

Thank you Beth. :)

Well, I picked up my energy drinks.  I got 3 different kinds because I didn't know which one I'd like, lol.

I got 2 Rockstar Roasted's, one Light Vanilla and the other premium blended Mocha and a Starbucks Doubleshot vanilla.

Hope you catch a break soon, Mel.  Sorry you are having such a rough time!

Jeannie

Update:  Ran into a snag last night, was NOT fun!!

1. Took too much Melatonin (12mg), made me so freaking drowsy and loopy that was hard to even walk to the bathroom. ::)

2.  NO MORE ENERGY DRINKS.  I don't know if it's because I didn't try the fruity kind first, but even a 1/3rd of a can made me soooo sick to my stomach.  Mocha and me don't agree. :P

3.  Panic attacks!  Due to the side effects of the above, had waves of them when I woke at 5am this morning after a shitty night.  

One good thing I found, that the Melatonin brings the pain level down a couple notches for me.

I soooo gotta learn to do things slowly. :-/

[smiley=hug.gif] [smiley=hug.gif]  Wish I had the answers, Sweetie.
I don't but sure am thinking of you and sending positive thoughts.


Love ya,
Jackie

Thanks Jackie, love you :-*



Well, last night was better than the night before.  Only had 4 attacks instead of the usual 6.  Killed them all with O2.  Only difference I did was taking 6mg of Melatonin 30min. before bed and one 850mg pill of Taurine (I need it for my anxiety) in addition to my standard vitamin regiment.  One did take something like 33 min. on the O2 to kill, but at least I wasn't beating my head with my fist. :-/

I found that they go away quicker if I breathe the O2 while laying down on my left side (I get hit on my right) and "massaging" where it hurt with no finger pressure.  That way I can stay more calm and my breathing has an even, steady pace.

:)

Hi Melissa,

So your idea seems like it was on the right track, even though it hasn't brought you PF.

I am glad for you that the edge seems to be taken off a bit.

I think I am coming out of cycle. No hits for the last 3 days and nights although some strong shadows.

When I am in remission, I forget all about CH. I think this is partly to enjoy PF time and partly to block out the idea of a future cycle.

This time round I am going to try to live alongside it and look at and try preventatives before my next cycle is due. So that means starting on treatment in, mid May.

I will definitely be reporting back here with what ever happens.

I hope your battle is short and remission is as long as long can be.

Ellick.

In the middle of sickening bouts, truly understand your pain.  Out of desperation tryin kudzu, had no faith in it, but would you believe I'm getting relief!  Slowly showing some improvement after 5 days but too early to tell.  But I'm IMPROVING! May be worth looking into?  Heard about it here from other sufferers......thank you guys!

oregonian clusterer wrote on Feb 6^th, 2009 at 12:37pm:

In the middle of sickening bouts, truly understand your pain.  Out of desperation tryin kudzu, had no faith in it, but would you believe I'm getting relief!  Slowly showing some improvement after 5 days but too early to tell.  But I'm IMPROVING! May be worth looking into?  Heard about it here from other sufferers......thank you guys!

LOL!  Thanks oregonian. :)  I did the 'Zu last cycle and it worked awesome for me.  Unfortunately I was too late this cycle and screwed up by trying something else.  I am now at the tail end of it and I won't mess with it anymore as it only makes things worse.

I am thrilled though that Kudzu is helping you!!  I hope it keeps up and that your cycle is a short one.

:)mel

Ellick, thank you so much and it is great that your cycle is on the way out.  I hope to be following close by!

BTW, if you can, stick around to help other sufferers when you can.  Any help we can give to others here is precious.

:)mel

Melissa wrote on Feb 6^th, 2009 at 1:21pm:

Ellick, thank you so much and it is great that your cycle is on the way out.  I hope to be following close by! BTW, if you can, stick around to help other sufferers when you can.  Any help we can give to others here is precious. :)mel

I'll be sticking around. Looking forward to your post that you are PF.

Ellick.

Mel, bump.

Geez Mel, I'm so sorry you are having such a rough time finding something to help you this cycle.

I wish I could take some f it away from you.

All I can contribute I am caffeine intolerant, meaning that I drink no more than 2 cups of coffee before noon.  Otherwise, I'm awake all night.

However, I have found that Red Bull or other caffeine/taurine drinks have helped me.   That combined with 02 and my rc seeds have kept me almost pain free for over two years ( two or three rouge hits in between).  

Just know that I'm vibing, praying and sending hugs to you.

Sandy

Mel,

I'm so sorry that this cycle is a brutal one for you. And I'm sorry to hear that energy drinks don't agree with you - well at least that one. I was hoping that they would help you, too!

Lots of PF wishes your way,
Sanna

Sandy & Sanna, thank you!! :-*


Ok, here's an update:  Friday night I was woken with 3 attacks, and here's the kicker, last night I fell asleep at 4:30pm and slept off and on until I woke with an attack at 5:17am this morning (which I aborted with O2 till it went away at 5:33am).  Now, I'm not sure if it's what i'm doing that's helping, or if my cycle is FINALLY winding down.

Either way I'll take it!!!!!!

:) :) :)

Mel, I hope today finds you in less pain and close to the end of this awful cycle.

Walk in Peace  Iddy  :)

Great news Mel!!  I hope the beast is packing his bags and leaving!!

Hugs,
Beth

Mel,

I'm glad you got a bit of rest.   I sure hope he's on his way out!

Hugs to ya!

Jeannie

Why are you off meds Melissa?  Have you tried any of the clusterbuster remedies?  I tried RC seeds once since they are legal, and as gross as it was it seemed to help.  I had to do a few doses and it definitely lowered the intensity and frequency of attacks after the 3rd dose, and then either the cycle ended or the RC seeds aborted it.  I also tried the more standard CB method once, and as much as I didn't like it, the headaches went away for over a year.

Who do you get your Oxygen from?  I made a deal with an Apria manager in SE Wisconsin and get a good rate and such on the O2 if I bring my own tanks in to be refilled.  I've never had to update my script with them either.  It's a shame the O2 isn't working so well for you anymore.  Have you tried staying on it longer after the attack is aborted?

I do hope that your cycle is ending! :)

Sanna

Thanks everyone!  The night before last was rough, had 5 attacks, but I'm pretty sure it's because I forgot to take my extra Magnesium & Zinc along with my normal vit. regiment.  Last night was MUCH better, only 1 attack again! :)


slhaas wrote on Feb 10^th, 2009 at 1:30pm:

Why are you off meds Melissa?  Have you tried any of the clusterbuster remedies?  I tried RC seeds once since they are legal, and as gross as it was it seemed to help.  I had to do a few doses and it definitely lowered the intensity and frequency of attacks after the 3rd dose, and then either the cycle ended or the RC seeds aborted it.  I also tried the more standard CB method once, and as much as I didn't like it, the headaches went away for over a year. Who do you get your Oxygen from?  I made a deal with an Apria manager in SE Wisconsin and get a good rate and such on the O2 if I bring my own tanks in to be refilled.  I've never had to update my script with them either.  It's a shame the O2 isn't working so well for you anymore.  Have you tried staying on it longer after the attack is aborted?

Steve, I wrote this on another thread on the CH Specific board, but I'll copy and paste it here. :)


Quote:

I do have medication (i.e. Relpax, Amerge), but would rather take natural remedies as prevents and abortives.  I had very, very good luck with Kudzu my last cycle, but I screwed up this cycle by not taking it and took Taurine instead thinking it'd work as a prevent.  It does not for me.  Also, triptans tend to cause a higher attack frequency and longer cycle duration for me. As for hallucinagenics, I have a history of clinical depression and anxiety/panic disorder and had adverse effects when I tried it last cycle also.  Therefore I chose not to try it for this one.

as for the O2, I get mine from Walgreens Home Care that has Lifegas as their supplier.  So far I haven't had a problem obtaining what I need.  As for staying on it longer after the CH has passed, it doesn't do a bit of difference for me.  The CH's attack as soon as I hit REM sleep.

Thanks!

Melissa wrote on Feb 11^th, 2009 at 3:02pm:

Quote: I do have medication (i.e. Relpax, Amerge), but would rather take natural remedies as prevents and abortives.  I had very, very good luck with Kudzu my last cycle, but I screwed up this cycle by not taking it and took Taurine instead thinking it'd work as a prevent.  It does not for me.  Also, triptans tend to cause a higher attack frequency and longer cycle duration for me. As for hallucinagenics, I have a history of clinical depression and anxiety/panic disorder and had adverse effects when I tried it last cycle also.  Therefore I chose not to try it for this one. as for the O2, I get mine from Walgreens Home Care that has Lifegas as their supplier.  So far I haven't had a problem obtaining what I need.  As for staying on it longer after the CH has passed, it doesn't do a bit of difference for me.  The CH's attack as soon as I hit REM sleep. Thanks!

Yikes!  No more verapamil either I assume.  I am cautious of hallucinagenics as well.  Though I hated the feeling, it was worth it the one time I tried with mushrooms as it ended the cycle for a long time.  The RC seeds made me feel nothing other than less intense and less frequent hits, so it might be worth a try.

I feel bad for you regarding the oxygen.  My headaches are triggered by REM sleep too, but I wake up, hit the oxygen to abort and then stay on it a good while after I'm PF.  Then I'm able to go back to sleep and am rarely hit again with a new REM cycle.  My doctor swears that if I don't have a lung disorder I could sleep with the oxygen on, but I haven't tried it, and even if it were safe I think it'd waste a lot of oxygen, but it's something to consider as well.

I'm glad you found relief in Kudzuu and with mealtonin, zinc, etc.  Neither did much for me.  I would love to be all natural like you're doing.  I hate how many chemicals I'm pumping into my body.

Sorry the energy drinks don't agree. I found Monster Hitman energy shot that seems to abort when I get the eye twitch going at work. Kind of citrusey taste that is not disagreeable, but I'd rather down a Loca Moca. I've been using one of the SAD lights in the mornings which is supposed to regulate the natural melatonin and seratonin levels. At least for me, it's evened out my moods and I seem to be on an even keel. I also seem to be getting better sleep.