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mmeyer4663

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Hello all! Glad I found this forum!
May 26^th, 2010 at 12:10am

Hey all! 51 year old with long history of CH. Married 20 years this year. 4 girls. All adopted from China. Ages 14, 12 and 10 year old twins.

I have been CH free for.....at least three years. All of a sudden, last night, whammo! Out of a sound sleep. Here we go again!.

I have, in the past had great success with O2 and Maxalt. If I catch it fast enough, either one will usually do the trick.

Today was not a good day at all. Had a CH hangover all day. Got online with my pharmacy. In the past, I could get a refill of the Maxalt same day. Well, they have a new policy and only keep the last 15 months of records!!!
Called the Drs office after I found out the pharmacy issue. double wammy here. My Dr. is out of town until Friday! Also, they have switched to an electronic record system for historical records. Guess what? The Dr that reviewed my record could not find any reference to me getting a scrip for Maxalt ever. No appts available until my Dr is back on Fri and he would not call in a scip for Maxalt for me nor O2. Drs. recommendation was to take 2 Aleve twice a day until Fri. Not working so hot as a preventative measure.

Started feeling another one come on tonight so, I got on the old puter and figured I would browse the CH site and see what was there and found this. Seems for the moment, to be helping tonight's wave.

Anyway, this site looks to be a blessing and a friendly area to share.

Thanks!

Kind of a PS. Don't do what I did. Keep a copy of your scrip # and pharmacy where you last filled the scrip!!

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« Last Edit: May 26^th, 2010 at 12:17am by mmeyer4663 »

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Kevin_M CH.com Sponsor Offline withered branches grow green again. Posts: 8754 Michigan, USA Gender:	Re: Hello all! Glad I found this forum! Reply #1 - May 26^th, 2010 at 12:46am Hi and welcome. There are helpful types of drinks like Redbull that are obtainable until your doctor returns. Kind of slamming one or two at the onset may catch it before it gets rolling. And then there's the ice pack for something that may help endure. Glad oxygen has worked for you.
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mmeyer4663

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Re: Hello all! Glad I found this forum!
Reply #2 - May 26^th, 2010 at 6:41am

Kevin_M wrote on May 26^th, 2010 at 12:46am:

Hi and welcome.

There are helpful types of drinks like Redbull that are obtainable until your doctor returns. Kind of slamming one or two at the onset may catch it before it gets rolling. And then there's the ice pack for something that may help endure.

Glad oxygen has worked for you.

Thanks for the RedBull tip.
Stayed up a lttile later last night for fear of waking up with a headache and to see if maybe changing routine (bio clock) would help. No CH last night! Praise the Lord!

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nate

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Re: Hello all! Glad I found this forum!
Reply #3 - May 26^th, 2010 at 8:08am

mmeyer4663 wrote on May 26^th, 2010 at 12:10am:

Hey all! 51 year old with long history of CH. Married 20 years this year. 4 girls. All adopted from China. Ages 14, 12 and 10 year old twins.

I have been CH free for.....at least three years. All of a sudden, last night, whammo! Out of a sound sleep. Here we go again!.

I have, in the past had great success with O2 and Maxalt. If I catch it fast enough, either one will usually do the trick.

Today was not a good day at all. Had a CH hangover all day. Got online with my pharmacy. In the past, I could get a refill of the Maxalt same day. Well, they have a new policy and only keep the last 15 months of records!!!
Called the Drs office after I found out the pharmacy issue. double wammy here. My Dr. is out of town until Friday! Also, they have switched to an electronic record system for historical records. Guess what? The Dr that reviewed my record could not find any reference to me getting a scrip for Maxalt ever. No appts available until my Dr is back on Fri and he would not call in a scip for Maxalt for me nor O2. Drs. recommendation was to take 2 Aleve twice a day until Fri. Not working so hot as a preventative measure.

Started feeling another one come on tonight so, I got on the old puter and figured I would browse the CH site and see what was there and found this. Seems for the moment, to be helping tonight's wave.

Anyway, this site looks to be a blessing and a friendly area to share.

Thanks!

Kind of a PS. Don't do what I did. Keep a copy of your scrip # and pharmacy where you last filled the scrip!!

The doc that suggested the aleve obviously has NO IDEA Shocked

about CH. Before I found out what was going on with my headaches I was doing 5-6 aleve, Tylenol, aspirin, what ever i could get my hands on at a time. the docs even tried prescription pain killers they didn't even faze it.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello all! Glad I found this forum! Reply #4 - May 26^th, 2010 at 9:33am Welcome to the board. I've been caught with my drawers down a time or two......sucks getting caught without any defense. I use Sugar Free Red Bull, will really knock a hit down several notches for me. Joe PS you near San Diego??
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mmeyer4663 CH.com Newbie Offline I Love CH.com! Posts: 12	Re: Hello all! Glad I found this forum! Reply #5 - May 26^th, 2010 at 9:36am I think their Aleve suggestion was more of a preventative measure to try and prevent occurrence, not a method to relieve pain once the CH starts. At least it seems to be helping the headache hangover I get the following day(s) after having an episode. Do you guys experience the hangover feeling?
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Guiseppi

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Reply #6 - May 26^th, 2010 at 9:39am

Oh yeah....an untreated 90 minute attack leaves me feeling like I was hit in the side of the head with a 2X4...repeatedly! Grin

I use energy drinks and on occasion Excederin for Migrains for the real persistent "hangovers." Although make it a point to REALLY limit the OTC's as they eventually cause more problems then they solve!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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mmeyer4663 CH.com Newbie Offline I Love CH.com! Posts: 12	Re: Hello all! Glad I found this forum! Reply #7 - May 26^th, 2010 at 9:43am Hear ya on all points. Can't wait to get the safe O2 going!
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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: Hello all! Glad I found this forum! Reply #8 - May 26^th, 2010 at 11:37am I get a giggle out of it when someone mentions OTC meds to me. Girl: "Excedrin Migraine really works for my headaches!" Me: "You're cute." pats her on the head
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mmeyer4663

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Re: Hello all! Glad I found this forum!
Reply #9 - May 26^th, 2010 at 1:38pm

Guiseppi wrote on May 26^th, 2010 at 9:33am:

Welcome to the board. I've been caught with my drawers down a time or two......sucks getting caught without any defense. I use Sugar Free Red Bull, will really knock a hit down several notches for me.

Joe

PS you near San Diego??

Colarado
not enough O2 to start with! Wink

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello all! Glad I found this forum! Reply #10 - May 26^th, 2010 at 2:03pm Was gonna run you over a tank but that's a fair drive...1110 miles from my front door to my kids dorm room at Regis....having made that drive a few times! Beautiful country you folks have there. John Denver knew of what he spoke! Joe
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mmeyer4663

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Re: Hello all! Glad I found this forum!
Reply #11 - May 26^th, 2010 at 4:15pm

Guiseppi wrote on May 26^th, 2010 at 2:03pm:

Was gonna run you over a tank but that's a fair drive...1110 miles from my front door to my kids dorm room at Regis....having made that drive a few times! Beautiful country you folks have there. John Denver knew of what he spoke!

Joe

Yeah. We moved out here from the DC area in '97. My wife cried when were in Manassas, VA when I first told her. You couldn't drag either one of us outta here for notti'n now.
Just as a write this, yet another tornado warning for the Denver area! Life on the edge of tornado alley!

Oh! And thanks for the O2 offer!

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djphrenzy

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Reply #12 - May 26^th, 2010 at 5:55pm

I spent a good 6 years of my childhood in Kansas. We had a second family room in the basement away from any windows with a battery powered TV/Radio. Spent a good amount of time down there.

We had one close call at about 7am on a saturday morning were a tornado ripped off most of our neighbors roof and deposited it in the field behind our houses. Our house was mostly unscathed (other than a couple shingles, some siding).

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mmeyer4663

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Reply #13 - May 27^th, 2010 at 1:53pm

mmeyer4663 wrote on May 26^th, 2010 at 1:38pm:

Guiseppi wrote on May 26^th, 2010 at 9:33am:

Welcome to the board. I've been caught with my drawers down a time or two......sucks getting caught without any defense. I use Sugar Free Red Bull, will really knock a hit down several notches for me.

Joe

PS you near San Diego??

Colarado
not enough O2 to start with! Wink

Still taking the Aleve twice a day as suggested by my Drs standin.
Woke up about midnight last night with a doozy! Ran downstairs and chugged one of the Red Bull sugar free can I got late yesterday. Worked GREAT! took about 30 minutes but was able to get back to sleep. Of course, woke up at 3:30 bouncing off the walls from the caffeine. I can deal with a lack of sleep better than the monster!

Thanks a TON for the Red Bull suggestion!

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Righteye

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Reply #14 - May 30^th, 2010 at 2:10am

I've tried up to eight vicodin at one time, probably enough Excedrin to kill me in a day..and it had absolutely no effect whatsoever. That was about six years ago before I found imitrex. I'm too stupid to get my monthly allotment my insurance allows (9pills 6 inhalers) when I don't have a cluster, so when I get in a cluster, (now), I have to buy it out of pocket. I can honestly say I feel your pain, over 38 years now, since I was 15. Thank you to everyone posting here.

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Hello all! Glad I found this forum! Reply #15 - May 30^th, 2010 at 10:40am Yea the vicodin is not a good idea. When you get the O2 make sure you get a non-rebreather mask. Click on the oxygen link on this site and print out the info to take with you to the doctor. read up on what others have posted about melatonin for night.
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mmeyer4663

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Reply #16 - Jun 1^st, 2010 at 11:46am

Bad news/good new over the weekend.
Frequency is up this time. 3 wake up calls on Sunday night and 2 last night.
The good news is that, in playing around with the flow rate of O2, if I start huffing the O2 as soon as I am rudely woken up, I can abate the attack in about 5 - 10 mins using a flow rate of 10 LPM instead of the suggested 15 LPM.
Trying to minimize the use of O2 and stay off meds. If I can treat/abate the attack effectively, I can stay away from the preventatives and all of their side effects.

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mmeyer4663

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Reply #17 - Jun 3^rd, 2010 at 2:19pm

Not sure if this has been covered yet.

I noticed last night, as soon as I lied down for bed, my head started up again. Up until that time, I had not felt a thing all day.

I am wondering if laying flat contributes to the problem?
Has anyone experimented with sleeping more upright?
I might try it tonight, as uncomfortable as it sounds and see what happens.

Last night was especially bad. Starting at 10 PM, was woken up with a Ch about every hour. 5 - 10 mins and O2 and pain was gone until the next event. After getting up at 6, pain free since.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello all! Glad I found this forum! Reply #18 - Jun 3^rd, 2010 at 6:03pm Laying down is not a trigger for me but is for many. I'm sure others will chime in but several have posted that on cycle they either sleep in their recliner or propped up on pillows. Joe
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mmeyer4663

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Reply #19 - Jun 3^rd, 2010 at 8:32pm

Guiseppi wrote on Jun 3^rd, 2010 at 6:03pm:

Laying down is not a trigger for me but is for many. I'm sure others will chime in but several have posted that on cycle they either sleep in their recliner or propped up on pillows.

Joe

Thanks and ARGH! I am a long time stomach sleeper. At least that's how I start out.
Worth a shot, if I can get to sleep propped up on my back.

Thanks again for everyone's help and suggestions!

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Kevin_M

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Reply #20 - Jun 6^th, 2010 at 1:00pm

mmeyer4663 wrote on May 26^th, 2010 at 12:10am:

Drs. recommendation was to take 2 Aleve twice a day until Fri. Not working so hot as a preventative measure.

mmeyer4663 wrote on May 26^th, 2010 at 9:36am:

I think their Aleve suggestion was more of a preventative measure to try and prevent occurrence, ...

mmeyer4663 wrote on May 27^th, 2010 at 1:53pm:

Still taking the Aleve twice a day as suggested by my Drs standin.

mmeyer4663 wrote on Jun 1^st, 2010 at 11:46am:

Bad news/good new over the weekend.
Frequency is up this time. 3 wake up calls on Sunday night and 2 last night.
The good news ... I can abate the attack in about 5 - 10 mins using a flow rate of 10 LPM ...
Trying to minimize the use of O2 and stay off meds. If I can treat/abate the attack effectively, I can stay away from the preventatives and all of their side effects.

mmeyer4663 wrote on Jun 3^rd, 2010 at 2:19pm:

Last night was especially bad. Starting at 10 PM, was woken up with a Ch about every hour. 5 - 10 mins and O2 and pain was gone until the next event.

Well, I'd consider the Aleve a non-preventative by now. Although you mention staying away from them due to side effects, many times a preventive med can decrease the hits, if taken in the right dosage. Been there, man. I've used verapamil in gradual increments.

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mmeyer4663 CH.com Newbie Offline I Love CH.com! Posts: 12	Cluster free for 5 days! Reply #21 - Jun 19^th, 2010 at 1:52am I think this is the shortest cycle I have ever had. Only 3 weeks! Hopefully, they stay away!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello all! Glad I found this forum! Reply #22 - Jun 19^th, 2010 at 9:33am That'd be great news! Remember our slogan. Live life between your hits, enjoy your pain free time, ALWAYS be ready to do battle! Hoping for a LONG remission for you. Joe
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bejeeber

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Reply #23 - Jun 19^th, 2010 at 11:59am

mmeyer4663 wrote on Jun 3^rd, 2010 at 2:19pm:

Starting at 10 PM, was woken up with a Ch about every hour. 5 - 10 mins and O2 and pain was gone until the next event.

Well that sure sounds familiar.

When I was in peak cycle, using O2 to knock down hits, but having them come back every hour when trying to sleep at night, I resorted to using 1/2 dose imitrex shots, which gave me comparatively luxurious 3-4 hour stretches between hits.

For all I know though, you or I could still be optimizing our O2 use further to get longer lasting results, and now that I've seen the reports of folks chugging a red bull with their O2 to extend the O2's effectiveness - even at night - I might try chugging at night if I'm faced with this again, even if all that PM caffeine does seem counterintuitive. Plus there's Batch's PH balancing that I'll likely be trying next time.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Hello all! Glad I found this forum! Reply #24 - Jun 19^th, 2010 at 1:46pm Welcome to the board mmeyer4663 glad you found us sorry you had too. You'll find loads of info here and plenty of advice if needed. Going to keep this short as I am exhausted just got done fighting the beast wielding an 8 kip sword. PF Days and Nights to you!
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