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Erics.Parents CH.com Junior Offline I Love CH.com! Posts: 27	How do you know Nov 22^nd, 2010 at 5:29pm How do you know when the CH cycle is coming to an end? Does it stop abruptly or just gradually? I'm so ready for Eric, my son, to have a break from this and to just be a teenager for awhile. Also, what is the average amount of time for a break before another cycle begins?
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Guiseppi

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Re: How do you know
Reply #1 - Nov 22^nd, 2010 at 6:00pm

Sorry, there is just no definitive answer. History helps a little, how his cycles have ended in the past, but even that's no big help as just as the beast has you thinking there is a consistent pattern, he'll morph again.

I usually start with shadows, then a hit every couple of days, within 2 weeks I'm getting hit 2X a day. That's high cycle for me. The beast goes out the same way. Others have a horrible, 4th of July grand finale headache or 2, then he just stops visiting.

Same can be said for remissions. My shortest were 3-4 months, longest was almost 2 years. It's especially tough it seems in the younger sufferers, where the beast hasn't settled into any routine yet.

My heart breaks for you, my girls are 24 and 26, I still watch them like a hawk for any sign of CH, none so far. Do you have an effective treatment regimen? Oxygen? A good neuro? Thanks for doing the legwork for your son, is he a member of the board yet? We'd love to help any way we can.

Joe

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Erics.Parents

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Re: How do you know
Reply #2 - Nov 22^nd, 2010 at 7:04pm

Well, he this is real cycle. He had his first CH this past summer and they lasted about a couple of weeks and then we found O2. When he started using it, they started to go away, one about a week. The starting this past October they came heavy, every day and night. And it's still here. We just up-ed the O2 to 15 lpm because it wasn't working anymore. And meds seem to work for about 2 days and that's about it.

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Brew

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Re: How do you know
Reply #3 - Nov 22^nd, 2010 at 7:48pm

You do understand that most preventative regimens take a couple of weeks to build up to therapeutic levels in a sufferer's system, right? You could take verapamil for two weeks only to find that the dosage is too low, at which time you'd start upping it (in concert with your doctor). It may be a month or more before he starts to get any real relief. It's this month where you'll need your rescue meds and O2 the most.

Might I also suggest you go to this site and start reading:

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jared

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Re: How do you know
Reply #4 - Nov 23^rd, 2010 at 11:08am

As Brew and Joe touched on, every sufferer can experience variety in their episodes. I started when I was 17 myself and have really never followed a set pattern so much. As far as treatment, ever tried melatonin? You can get it otc and it has seemed to help me with my night ha's a lot. 10 mg a night and I sleep like a baby when I was being awakened by 2 a night. Might be worth giving a try!

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« Last Edit: Nov 23^rd, 2010 at 11:09am by jared »

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Re: How do you know
Reply #5 - Nov 23^rd, 2010 at 11:15am

As Brew mentioned, patience is the order of the day when working with prevent meds. Most take 10-14 days to show any improvement in the patients number and /or intensity of hits. The first few cycles can be the hardest as you try to establish WHICH med works best and WHAT doseage is the magic number. You have to be careful to not give up on a med too soon, in your hurry to try another med which someone else says may work better. Hard to do when your watching your son suffer. Cry

The plus side is you already have oxygen. Makes it easier to work with the prevent dosing when you know you always have the 02 to knock down a hit. Don't be afraid to kick that flow rate up even higher if need be. Many on the board have found 15 LPM did nothing, 25 LPM would kill the beast in minutes.

Hang in there dad.

Joe

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Erics.Parents CH.com Junior Offline I Love CH.com! Posts: 27	Re: How do you know Reply #6 - Nov 23^rd, 2010 at 6:14pm Eric is right now on 100mg of topamax two times a day (for about 2 weeks now), O2, and any pain killer that will work. I want to try the imtrex shots but I'm afraid of rebound head aches. I would like to up the O2, where is the cheapest place I can get a regulator that goes up that far.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: How do you know Reply #7 - Nov 23^rd, 2010 at 6:46pm Regulator = ebay. Imitrex > narcs.
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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: How do you know Reply #8 - Nov 23^rd, 2010 at 10:36pm My wife recently got me a reg that goes up to 25 LPM off E-Bay for $25. Read the oxygen info tab to get an understanding of the different fitting types based on your tank sizes. I'm with Brew, I would take the imitrex shots over the narcotic route any day. Joe
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Erics.Parents

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Re: How do you know
Reply #9 - Nov 24^th, 2010 at 9:22am

So...just to make sure. I looked on ebay and a regulator that goes up to 25 lmp is about $65. Is that right? I want to make sure before I go and dish it out. The one that goes up to 15 lpm is about $25.

I'm calling the Dr. today about the imtrix shots. He tried the nasel spray and he hates it. As far as the shots, how much do you take....I want to avoid rebound headaches as much as possible.

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Re: How do you know
Reply #10 - Nov 24^th, 2010 at 9:36am

The regulator sounds good, confirm the fitting on it will fit the style tank you have. Imitrex injectables come in a 6 mg stat pen. Read the imitrex tip on the left, you can break it down to 3, 2 mg shots per needle, 2 mg seems to work for most, will save you lots of cash and extend your imitrex supply.

If they offer you the new suma pro needleless injectors, beware, they're REALLY pricey. Imitrex did not cause rebound attacks for me, however I'm one who believes they may extend cycles. But as I said earlier, that doesn't stop me from using them when I'm getting creamed.

Joe

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Erics.Parents

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Re: How do you know
Reply #11 - Nov 24^th, 2010 at 10:38am

Thanks. I just ordered two 15 lmp regulators for now. I have a connector and if that's not working, I'll connect two tanks together to see if that works before dishing out $65.

Right now Eric hasn't had a cycle per say. He just started this summer about 1 per week as long as he was using O2 then in Oct. he started getting them 3 per day Sad

It was really sad yesterday because he went to a wrestling meet and had to watch everyone else wrestle. He did get a CH during the meet, worked through it, slept in the stands for 2 hrs. and woke up to see that last of the matches. He worked so hard this summer, is the best wrestler on the team, and now this. Life stinks sometimes.

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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: How do you know Reply #12 - Nov 24^th, 2010 at 10:47am Always more so for the younger sufferers, just seems a whisker unfair at times. And yeah, iy you can join the 2 reg's that'll give you a 30 LPM feed, that should keep up with him! Joe
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Re: How do you know
Reply #13 - Nov 24^th, 2010 at 12:26pm

Erics.Parents wrote on Nov 24^th, 2010 at 9:22am:

So...just to make sure. I looked on ebay and a regulator that goes up to 25 lmp is about $65. Is that right? I want to make sure before I go and dish it out. The one that goes up to 15 lpm is about $25.

I'm calling the Dr. today about the imtrix shots. He tried the nasel spray and he hates it. As far as the shots, how much do you take....I want to avoid rebound headaches as much as possible.

Why does he not like the nasal spray??

He must be tasting the med which means he's not using it right. Sounds like hes snorting it and not sniffing it. I use it and never get the taste,if you taste it in your throat it's going to take longer to work. He needs to take a very light sniff and if his nose runs another light sniff. Like some if his nose gets stuffing during an attack the nasal spray may not be for him. My nose does not get stuffy and the spray will abort in 10 mins or less.

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Erics.Parents CH.com Junior Offline I Love CH.com! Posts: 27	Re: How do you know Reply #14 - Nov 24^th, 2010 at 10:34pm He's only used it twice so far so he might not be using it right. It is the taste of it he doesn't like, it makes him sick to his stomach. The ones he got are one time use. Should he only use half of it at a time?
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Re: How do you know
Reply #15 - Nov 25^th, 2010 at 8:56am

Sounds like he is inhaling too deeply when taking the nasal spray. A Gentle sniff is only needed, the idea is to keep it in his nasal passage so it can be absorbed. Have him do a very light inhale tilting his head forward just a bit NOT A LOT (like he is looking at a book) and then hold his nasal passage closed for a few minutes. This should cut down on what spray he is swallowing.

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Re: How do you know
Reply #16 - Nov 30^th, 2010 at 9:37am

Erics.Parents wrote on Nov 24^th, 2010 at 10:34pm:

He's only used it twice so far so he might not be using it right. It is the taste of it he doesn't like, it makes him sick to his stomach.

The ones he got are one time use. Should he only use half of it at a time?

You cant use half at a time. Mine are pre loaded and pressurized. I dont like needles so I went this route,when use right they work great.

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Re: How do you know
Reply #17 - Nov 30^th, 2010 at 2:47pm

mikstudie wrote on Nov 30^th, 2010 at 9:37am:

You cant use half at a time. Mine are pre loaded and pressurized. I dont like needles so I went this route,when use right they work great.

You obviously haven't read the Imitrex tip:

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Re: How do you know
Reply #18 - Nov 30^th, 2010 at 2:58pm

Brew wrote on Nov 30^th, 2010 at 2:47pm:

mikstudie wrote on Nov 30^th, 2010 at 9:37am:

You cant use half at a time. Mine are pre loaded and pressurized. I dont like needles so I went this route,when use right they work great.

You obviously haven't read the Imitrex tip:

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Brew,the discussion i am having with ericsparents is in regards to the use of pre mesured NASAL SPRAY and how it upset erics stomach. At least I thought so, now you have me confused.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: How do you know Reply #19 - Nov 30^th, 2010 at 3:02pm Sorry, Mike. My bad. This is a tip for turning auto-inject pens of imitrex into multi-use injections. Please accept my apologies.
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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: How do you know Reply #20 - Nov 30^th, 2010 at 3:20pm Brew wrote on Nov 30^th, 2010 at 3:02pm: Sorry, Mike. My bad. This is a tip for turning auto-inject pens of imitrex into multi-use injections. Please accept my apologies. No sweat Brew. I figured thats what you thought we were talking about.
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Erics.Parents CH.com Junior Offline I Love CH.com! Posts: 27	Re: How do you know Reply #21 - Nov 30^th, 2010 at 11:42pm I have told Eric the Nasal Spray tip. I think he's still afraid to use it. The O2 at 15 LPM is working.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: How do you know Reply #22 - Dec 1^st, 2010 at 6:58am Erics.Parents wrote on Nov 30^th, 2010 at 11:42pm: I have told Eric the Nasal Spray tip. I think he's still afraid to use it. I guess that's about the best we can hope for then. Use it, or don't. He has a choice, and there are consequences for either choice he makes. Growing up can be difficult sometimes.
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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: How do you know Reply #23 - Dec 1^st, 2010 at 8:32am The fact that the 02 is working is great,thats better than the Imitrex and cheaper.
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Re: How do you know
Reply #24 - Dec 1^st, 2010 at 10:36am

Erics.Parents wrote on Nov 22^nd, 2010 at 5:29pm:

How do you know when the CH cycle is coming to an end? Does it stop abruptly or just gradually? I'm so ready for Eric, my son, to have a break from this and to just be a teenager for awhile. Also, what is the average amount of time for a break before another cycle begins?

*you don't know
*some start having a major decrease in attacks while some just wake up to them being gone until the next cycle
*Some get 1 or 2 cycles per year sometimes during the spring and fall ( which also adds to the hypothesis surrounding circadian rhythm )
*Some have 6 cycles throughout the year skipping a month so not technically considered chronic
*Others go a decade with short cycles twice per year then wake up one day and they do not go away...That's my gig. episodic for 10 chronic for the past 6 going on 7.

You can't worry about it.
As a supporter especially mom, it's your job to make sure that he keeps a strong and positive mental attitude and to live his life like a teen should.
Many fall prey to the anxiety more so than the pain in my opinion. I feel that the pain will go away and it's my job to not dwell and to go provide for my family and to be the best, hubby, daddy and friend as well as professional that I can be.
Sure there are times where it's depressing(right now for example, I got my a$$ kicked last night and I can't get motivated but i will do what I have to do to get past this in a little bit)

Hugs to you for seeing your kid in pain, now kick his teenage butt into the reality that he's not dying and though it hurts, he should be out being a cool kid!

Eric

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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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