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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Question for Demand Valve Users
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Message started by jason1212 on Mar 3rd, 2014 at 4:28pm

Title: Question for Demand Valve Users
Post by jason1212 on Mar 3rd, 2014 at 4:28pm
I'm thinking about making the plunge and buying a demand valve. 

I hesitate for 2 reasons,

1-in this mother of a cycle I'm currently in the oxygen hasn't worked the same as in the past, it takes the pain away while I'm on it but won't abort for me anymore

2- the cost, normally wouldn't be an issue but this year I'm getting married and between the wedding and honeymoon, I am broke, however, I could make it happen if I knew it would help.

Here's my question:

A demand valve:
a) helps to abort better
b) helps conserve tank more
c) all of the above

Other than that I don't know what to try, this cycle is killing me.  It's nasty and resistant.  I have another neuro appointment tomorrow but I don't have much hope, if she does give me a pred taper it will be the 2nd one of this cycle which started around Christmas.

Currently I'm on 480mg of Verap daily, Amitriptyline, O2, Imitrex...  This cycle seems different to me than all the others, I'm getting very scared.  I've never had my clusters be so resilient to treatment or last so long in 1 day, lately I'm either HEAVY shadowing or full blown cluster ALL DAY. 

Title: Re: Question for Demand Valve Users
Post by jason1212 on Mar 3rd, 2014 at 5:05pm
forgot to add, I've also been trying the D3 regimen for the past 7 weeks, nothing yet.

Title: Re: Question for Demand Valve Users
Post by Racer1_NC on Mar 3rd, 2014 at 5:24pm
What flow rate are you using now?

Title: Re: Question for Demand Valve Users
Post by jason1212 on Mar 3rd, 2014 at 5:34pm
My regulator goes up to 25lpm, at both 15 and 25 the pain goes away in 5-10 min.  It used to be that the o2 would take the pain away, it would retun in 10-15 min and I would hit it again with o2 and the second time would abort it like 90% of the time.  This cycle it keeps coming back like all day till I hit it with trex. It's the exact same quality and feel of every cluster cycle I've ever had but it seems very different in that I've never felt this miserable ALL day, usually I will have at least a couple hours a day free of pain and shadows.  Maybe it's compounded by stress from the wedding?

Title: Re: Question for Demand Valve Users
Post by maz on Mar 3rd, 2014 at 7:19pm
Do you stop breathing 02 as soon as the pain goes away? Try staying on it for double the time ie: if the pain goes away in ten minutes, stay on the 02 for another 10. That might help. It does for me.
Maz.

Title: Re: Question for Demand Valve Users
Post by jason1212 on Mar 3rd, 2014 at 9:03pm
Really depends, at home I have the luxury of taking O2 for as long as I want and I do usually kick the flow down a notch after the pain goes and stay on it for another 10-15 min.  At work I'm lucky to get 5-6 min on it.  However, this last cycle, the o2 will not abort no matter how long I stay on it.  I'm scared as hell but at least the oxygen is still taking the pain away.

Title: Re: Question for Demand Valve Users
Post by Batch on Mar 3rd, 2014 at 9:18pm
Hey Jason,

Check my post in the thread titled " O2 Breathing techniques"  That should do the trick...

Are you taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3?

Take care,

V/R, Batch

Title: Re: Question for Demand Valve Users
Post by jason1212 on Mar 3rd, 2014 at 9:58pm
Yes sir, for nearly 7 weeks now.  So far I haven't noticed any difference.  For the last two weeks I've even ramped up to 15,000 IU/day.  I haven't been doing the Calcium though, I'm worried about it counter acting the Verap.  I also am going to get my levels checked this week so I'll get to see where I'm at. 

Title: Re: Question for Demand Valve Users
Post by Skyhawk5 on Mar 3rd, 2014 at 11:58pm
I have 2 Demand valves and they both greatly improved my aborts times. The mask available on this site works very well also but the Demand is better. I'm giving you a link to a cheaper Demand I bought 4 mnths ago. You will also need to get a mask or mouthpiece. The ones that come with the mask from here will work.

No Rx is needed to order this Demand.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Don

Title: Re: Question for Demand Valve Users
Post by wimsey1 on Mar 4th, 2014 at 8:29am
Nice link, Don. Jason, you didn't mention energy drinks in your routine. I have found that slamming a double Monster, ice cold, and then immediately hitting the O2 using my demand valve improves abort times to about 3-5 minutes. I love my demand valve and mask. I will also use the pressure button when I can't breathe fast enough to mediate the pain. Carefully. Good luck and God bless. lance

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