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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Hello I am a newbie
Oct 15^th, 2011 at 7:39pm

Hi Ashley and welcome to the forums.

It's possible that it is the start of another cycle, so be prepared but hopefully it isn't.

The verapamil dose is pretty low at 240mg a day, with most people needing 360-480 (or more) but that might be all you need. Similarly for the melatonin people often need quite a bit more, but as with the verapamil we're all different.

With the oxygen are you using a non-rebreather mask and a high flow rate (15lpm or higher)?

Comparing between cycles isn't simple as the beast will often morph slightly, so take each one as it comes.

For your questions, I'm not sure about people doing full time work and school but I suspect there will be some. I and lots others work full time, although a little flexibility is important. Some people have purchased their tanks, others rent them.

As to it getting easier, it certainly helps to have as much knowledge as possible and to have the support of people here who know just what it's like to have CHs.

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B.Baer

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Northeast Pennsylvania
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Re: Hello I am a newbie
Reply #1 - Oct 15^th, 2011 at 8:22pm

HI Ashley,

Welcome to our dysfunctional little family... Wink

1. Yes, I've worked full time, and early on in my cycles did take some post graduate courses. I still work full time, as said, a little and flexibility helps if possible.

2. I have never purchased a tank, I get mine through insurance, I have purchased a demand valve and regulators for M and E tanks. I keep it around even when not in cycle.

3. YES!!! I've dealt with the Beast the worst part of 20 years and I'm still fightin'... Not goin' strong mind, I'm gettin' a little older and slowed a step or two.... Grin

Preventatives and abortive are a great help.

The only constantly successful abortives I've used have been subcutaneous Imitrex injection and High flow Oxygen. I don't use the injections , since finding success with Oxygen. Preventatives have been hit or miss with me, and many others. See what works for you.

A good Neurologist, help from the fine folks on this forum and you should do just fine. Read as much as possible and don't be afraid to ask questions.
You have come to the right place.

Familiarize yourself with the menu to the left of the page, a lot of great information there.

Good luck in you battle with the Beast, and welcome to the forum.

All the best,

Baer

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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 I am a newbie Reply #2 - Oct 15^th, 2011 at 8:42pm Smart lady, kept your 02 on hand on and off cycle. I've learned to never let my guard down! I managed a 30 year law enfocement career by keeping an E-Tank in the trunk of my cruiser, and having understanding supervisors. Work harder then everybody else off cycle, so your few down times on cycle are easy to forgive. Joe
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ttnolan

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beats me

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Scotts Valley, CA
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Re: Hello I am a newbie
Reply #3 - Oct 15^th, 2011 at 8:52pm

Welcome, sorry you have to be here.
Alcohol is a major trigger for me and causes a slightly different, more intense hit. I would say that was it, and the verap just made it easier to handle. You may/maynot be completely out of cycle, or starting a new one. (I know, that's usless info)
If you feel you need it, up the dose of melatonin to 9mg before bed, helps night hits.
In answer to your questions:
1. I worked full time and went to school part time. Eventually went to school full time and worked part time. It is all very possible once you get the treatment down.
2. Yes I purchased my first E tank back in the 80s. However if purchasing tanks, get the industrial welding tanks or you will have problems filling them. I suggest a portable for the car, and a big sucker (M) for home.
3. I wouldn't say it gets easier... nothing easy about this pain, you just find workarounds and get better at battling the beast. There are a lot of new treatments coming out that promise to make our lives easier. Check out the sister site clusterbusters.com for more on that.
Stay strong, read all you can here. I have 36 years with the beast and am still quite alive.

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« Last Edit: Oct 15^th, 2011 at 8:56pm by ttnolan »

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B.Baer

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Re: Hello I am a newbie
Reply #4 - Oct 15^th, 2011 at 9:58pm

Good Point by ttnolan,

I too find alcohol a trigger, but only when in cycle. You'll find many of us with the same trigger, so exercise caution regarding the "Demon Rum" while in cycle.

I use beer as a test to see if I'm really out of cycle. I set two on the table and drink one, if I don't get hit in a reasonable amount of time I drink the second in celebration,

If I get hit after the first one, I chug the second, cause the damage is already done, no use wastin' a good beer... Wink

ttnolan with 36 years under your belt, you must remember the bad old days before Imitrex and High flow Oxygen.

I know I do, because of that, I'd say it's gotten better and I hope the future holds even more abortives and prevents till , dare I say it, we find a cure.... Hey, if your gonna' dream, dream in techno color.... Grin

Baer

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« Last Edit: Oct 15^th, 2011 at 9:58pm by B.Baer »

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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: Hello I am a newbie Reply #5 - Oct 15^th, 2011 at 10:13pm Ya Baer I remember... sick from toxic drugs and yet no relief... took 5 years for me to get O2 and it saved my life. I envy the newbies getting diagnosed quickly and with all this help here... but that's why I am here help'n to row this boat.
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Blondie Ash CH.com Newbie Offline I Love CH.com! Posts: 14	Re: Hello I am a newbie Reply #6 - Oct 15^th, 2011 at 10:16pm It's official they are back Taking my verapmil, and taking 9mg of melatonin tonight and off to bed, but obviously not for long. Thanks for your help and support.
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Uncontrollable

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Fighting The Beast since
1989!

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Corvallis, Oregon
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Re: Hello I am a newbie
Reply #7 - Nov 13^th, 2011 at 5:30pm

Welcome Ashley,

My title says Newbie but I've been a lurker for sometime and have been dealing with the monster for over 20 years. You are definitely not alone anymore. There is amazing support on this site and incredible amounts of information available.

One thing you'll learn, if you haven't found out already, is that you and other cluster sufferers will probably know more about this than most doctors. That's just a nature of the numbers. We're a small percentage of the world. The male/female ratio of this disorder is also starting to close up due to so many females being mis-diagnosed with migraines and, more recently, being correctly identified. I'm glad they are finally starting to come around.

Verapamil is definitely the prevent drug of choice...usually ramped up in the first two weeks by prednisone, mainly because it takes a couple weeks to get into your system.

I'm taking a weird combo of Baclofen (muscle relaxer) and Neurontin (anti-seizure). Honestly, I don't think it's working since I'm in a full blown cycle now, without a doubt and nighttime has become a thing of nightmarish multi-hits. I may have them switch me over but my neuro is going to try an experimental Botox treatment as soon as we clear it with insurance. I had an occipital nerve block done with lidocane and it seemed to help even though it was temporary.

The O2 is a great thing as well and probably the safest route to abort. You definitely have your head on straight about that. My magic number seems to be 25 lpm but it varies.

I'm a fellow Lake Worth-er myself! I saw the post and my jaw hit the floor. I haven't talked to anyone from that area in years! I live outside of Portland, OR these days but still get homesick. I left there in '95 but have been back a few times for short visits...went to Lake Worth Community High, the whole 9 yards.

I heard the old John G's building next to the pool at the beach is gone...had some great memories of that area... Roll Eyes

Un

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"My name is David Banner... the world thinks I'm dead... I travel alone... I try to keep the beast caged within myself... "

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LasVegas

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Episodic CH since 11 yrs
old, now 50.

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north of the 60th parallel
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Re: Hello I am a newbie
Reply #8 - Nov 13^th, 2011 at 7:04pm

Hi Ashley,
Sorry to read you are suffering, but you've got the best resource abut CH's available right here in this website and tremendous emotional support and advice from those of us who truly understand the TORTURE by the DRAGON!

Agreed with what others have mentioned about high flow o2 with a Non-Rebreather Mask. My magic # is 40 lpm and once I abort the attack, I drop it down to 15 lpm and stay on for 10 or 15 minutes regular breathing just to avooid a re-attack an hour or so later.

Melatonin has worked for many as mentioned, for me I am still experimenting as i'm new to the Melatonin. So far i've upped my nightly before bed dosage to 15 mg and am hoping it helps but still getting attacked at least 5x every night.

As for work, well um, that is a challenge for me personally as my Verapamil is still not working yet, but only been on it 2 weeks and as Un had mentioned it takes a couple weeks to usually get to therapeutic dosages and relief.

If interested in reading about work and CH's, my pint of view is found on my thread titled "Missing Work" and found on the Cluster Specific section of this board. Currently, i'm still out of work on leave of absence hoping to return ASAP once my meds provide enough comfort.

You ask does it get easier? Suppose that would be an individualized answer from each of us and I would personally say it depends on your knowledge of this dosorder, support of loved ones, an understanding boss, finances, a qualified doctor, meds that actually work, your patience level, etc.

Hopefully you get your relief soon! Wink

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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wimsey1

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MA
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Re: Hello I am a newbie
Reply #9 - Nov 14^th, 2011 at 8:28am

Ashley, that dose level of verapamil is low for treatment of CHs. The range can go from 240mg/day to 960mg/day. I currently find 640mg/day is my magic number. At least for now. Is your doc a headache specialist? I ask because 240mg might be the level the doc is comfortable with prescribing rather than the level you may require to effectively prevent the hits. Blessings. lance

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