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AnitaJ

Spousal support?

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Thank you all so much again. I really appreciate it.

 

CHfather, what GREAT info. THANK YOU so much. I've sent it along to my husband, and he is seeing his doc on Friday, so we can hopefully get those blood tests and whatnot. (I'm hoping maybe I can be there for that. I've been doing a lot of the research and I would love to tag along if possible.) And yes, actually, the link I posted was techniques and tips from a user named Batch--must be the same! But honestly, I don't know if we were doing it right. It all happened very fast.

 

Bill, that's exactly the mask we have from the store; holes on the side and a bag attached. Th =e bag did stay inflated the entire time, which I thought was the correct way to do it but maybe it's not?

 

I really do think that we are just not doing it all correctly and that we need to keep going and get the best equipment and try again. I'm not giving up on oxygen and I hope I can convince my husband to keep going with it.

 

(Funny story, yesterday at the hospital I asked if I could hook my mask up to the o2 while we waited for the doctor. The nurse said "sure, what's the flow rate?" I responded "15." And she just pauses and says "Wow....that's...really high!" I just kind of laughed and said "Oh yes. I know." I think we've been educating this hospital about cluster headaches for the past few years!)

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Anita, I accept your thanks for the D3 info on behalf of Batch, who as always was right there when help was needed.

And Bill is also a great and generous O2 expert (he gives very valuable talks about O2 at ClusterBuster conferences, among other things), and I'm glad he's on the case, too.  (If there's a chance that hubby or you and hubby could make it to the CB conference in Austin this fall, he/you should definitely do it.  I think it could be life-changing for him, as it has been for so many.)

The bag should fill when he's not breathing in, but empty when he does inhale (that's where the pure O2 is that he's inhaling is coming from) and then refill. If the bag actually remained full the entire time, something's wrong.  When Bill talks about outrunning 15 lpm, he means that the bag doesn't fill fast enough at that flow rate and so your husband has to wait before his next inhale, or inhale less than a full amount. You don't want that.  Probably the holes on one side of the mask have a gasket behind them (usually a white circular thing), and probably the other holes have nothing behind them.  The gasket, if it's working, should let air out as he exhales but not let any room air in as he inhales.  You should cover any open holes (with tape or with his thumb), because as he's breathing in they're letting room air mix with the pure O2 from the bag.  He should, as Bill also suggests, press the mask firmly to his face for a good seal, and not use the strap to hold it, ever.  You can cut the strap off.

This video might not help you much (though I confess that I needed it just to figure out how to assemble the ClusterO2 Kit (which used to be called the O2ptimask)), but toward the end the guy does talk about breathing strategy, and I just like his enthusiasm. https://www.youtube.com/watch?v=eX76JrEvNxE.  He uses the tube and not the full mask, but the principles are basically the same.

 

I know Bill and Denny are correct that there are times when O2 doesn't work.  But because it's such a valuable resource, which usually does work, it's important to keep trying, as they both say. 

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AnitaJ,

 

I'm sure Bill and others (resident O2 experts) will chime in, but in the interim:  It sounds like your mask has a group of 6 or so holes in a circle on each side of the mask?  Is there a disk over the group of holes that acts like a one way valve?  (lets air flow out when he exhales, but prevents outside air from coming back in?  

 

All the recent masks I'm seeing they're shipping with one or both exhale groups of holes completely open to the air.  If they are open, he isn't getting 100% O2.  He's getting a semi low concentration of O2, because it's mixing with outside air being pulled back in through the holes.  I use duct tape and tape over mine.  That allows for 100% O2 concentration.  If he's getting less than 100%, that'll darn near prevent the O2 from helping.  I've found if I have anything less than 100% it's useless for me.

 

Please keep us posted :)

J

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Thank you, all.

 

ThatHurtsMyHead, we do have a mask with a gasket (the disc) on one side and holes on the other. Should I tape over both the holes and the gasket, or just the holes?

 

We had a good 48 hour run with no attacks, but it's creeping back up today. Currently it appears he's hooked up to the concentrator and he says that the pain is at least not increasing, so that's good, I suppose. (I'm not with him at the moment)

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Just the open holes.  If you tape both, which you can do, he'll need to task the mask off his face to exhale.  If he does that, he'll have to be very careful not to take in any room air when he inhales. If he covers the open holes with his thumb instead of taping them, he can take his thumb off off to exhale -- but again, he has to be very careful to keep those holes covered when he inhales.

I'm not even gonna ask why the concentrator. 

Because it doesn't make 100% O2, using the concentrator is kind of like leaving the holes open in the mask.  Plus, usually -- maybe yours is different -- the flow rate on the concentrator doesn't go up very high.

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Thanks, CHfather. I also don't know why he's using the concentrator, but I'm doing the best I can to give him as much info as I can. In the end he needs to be the one to really put it into action, and I don't think I'm being helpful for him right now, which stinks.

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AnitaJ,

 

Concur with CHF above.  You only need to tape the open holes.  A small piece of duct tape covers them perfectly.  Since the bag is staying inflated now, you might find once those holes are covered to prevent outside air from coming in, that the bag might start collapsing now.  That's a bit of a good thing, as it'll mean he's getting more of the O2. 

 

J

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I suppose he might be frightened by his experience with the pure O2 from the cylinder the other night.  An experience with anything that seems to bring on a bad attack can make a person with CH very hesitant about trying it again.  Wishing you and him the best.

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Thank you for your kind words. I'm going to keep doing research but as of right now he seems dead set on thinking that "it doesn't help and we should look for other options". I think we just need to make sure we have all the right materials and learn how best to use it, but in the end I can't force him to try it again. I'm very disappointed. I was truly hoping this would help.

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Well, if he does the D3 with commitment, it will help.

In your initial message you said he has sumatriptan injections.  I'm not going to read back through the whole thread, but he should be splitting those for many reasons, including the lessened effect on causing rebound headaches.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

A prednisone taper might at least give a break from the pain for a while.

You said he's taking verapamil.  Quite a few people find that it doesn't start helping them until they have reached pretty high doses: up to 960mg/day, and sometimes even higher.

Lithium?  gabapentin?  Both of them help some people, though of course not without potentially tough side effects.  10 mg of melatonin at night (working up from there as needed)?

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Anita,

I had asked Batch whether he had seen people having such problems as your husband has had with O2.  I will say again that in my view he knows as much about O2 use as anyone. He's not really responding to what happened to your husband, when O2 seemed to make things worse or be ineffective, but just talking about frequency of attacks. I'm curious about whether any others might have noticed what he's describing. This information probably won't make your husband any more interested in trying to stick with the O2.

 

Here's what he wrote to me:  >>>There's an interesting phenomenon that occurs when CHers first start oxygen therapy.  The frequency of their CH goes up for two to three weeks then starts dropping by the end of the first month and is less than the starting frequency at the start of oxygen therapy by the 7th week.  Subsequent rounds of oxygen therapy for ECHers don't show this phenomenon during their next cycle.  CCHers only go through this phenomenon once.  I'll be explaining this phenomenon at the Conference in September.<<<

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Wow! That's interesting Chf! I don't remember it affecting me like that...but....my forgetter works better than any of my other faculties..lol! So great that I'll finally get to meet Pete in person after all these years! He was flying carrier based sortees at the same time that I was launching birds for sortees in Nam.

DD

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I'm pretty darn envious that so many of the great ones  -- you, Batch, Racer, Jeebs (I would imagine), Hipshot (I assume), and others I don't know about -- are going to be in Austin this year.  Sounds like it's going to be one of the great gatherings.

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AnitaJ,

 

I sure hope you can convince him to hit the O2 again.  It would be pretty sad if he decided not to (really) try the #1 abortive most of us use.  

 

Since the holes were open on his mask I'd give it a 99% chance that's the reason it didn't work.  He really wasn't getting 100% O2 at all.  

 

J

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Anita,

I have used O2 to stop shadows. I use low flow may be 8lpm and breath normal until they go away. By doing this I have been able to stretch the time between attacks. I think it is best to say that not all CH are the same. Experiment with breathing techniques, what works best for me is about 10 fast deep breaths with hard exhale at 25lpm and I turn down the flow to 10lpm and take deep breath and hold it until the ag is almost full and exhale hard and take a deep breath and repete intil the CH is gone. Remember to keep breathing O2 at a normal breathing rate for about the same duration that it took to abort the attack.

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I've had it not work.....but never make it worse. That being said.....I've learned most anything is possible with this crap.

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I will say for whatever reason I was not confident in 02 therapy when I used it for the first time, as a result I gave up too quickly on it. After I became better educated on proper methods it started working better for me. But even now sometimes I can only use it without a mask or I feel a panic attack coming. I had a bad experience almost drowning when I was young so sometimes I have hard time relaxing enough to breathe through a mask.

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CHFather, yes I got that kit. Still use the mask sometimes. I just do better without it when I'm highly agitated, and that was something I really struggled with when I started 02. I think when us new CH start out and some treatment doesn't show immediate results, whe might want to call BS before we really take time to let it work. One thing I have learned is there are no "magic bullets" you need patience and a lot of tools in your toolbox.

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Thanks to all, again, and apologies for my radio silence for a bit.

 

His doctor has him now on magnesium and something else, vitamin B maybe? I can't quite recall. The shadow is still there, but we're having longer stretches between the hits, which is at least something.

 

We also received the DosePro sumatriptan injections, which use compressed air and not a needle, so we can't split those, which is disappointing--when we had one of the needle kinds, splitting the dose really helped.

 

I'm going to give it a little bit of time before I push on the O2 again. I wish I could encourage him to speak with or meet up with someone who has more information on the O2, because I have a feeling hearing it from someone who's familiar with it would help. But again--I will just be here to support him, gather as much information as I can, and stay out of the way as needed.

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Hmm. Hope it's the mag plus whatever that's helping.  Mag has been recommended as a CH treatment for some time. Very mixed results, as with almost everything that's not first-line.  Some thanking the Lord for it and others saying it does nothing, or worse, for them.  Some powerful effects on the bowels, I have read.

 

DosePro is the same sumatriptan, just delivered differently.  Expensive, but maybe your insurance covers that.  Imitrex is now the generic (as I understand it) and DosePro, because of the new delivery technology, is non-generic.  Maybe you can convince the doctor or the pharmacist to go back to 'Trex.

 

I know a young woman ("young" to me, early middle-aged I guess to others) in DC whose life was changed by O2. She has become very reclusive in general, and even more so when she's in cycle as she is now, but maybe she'd agree to meet with him, if he wants. Unlike most people with CH, she has no interest in meeting others with the condition, so it's just be a favor if she's willing to do it.

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You are all so very kind, thank you for the offers. I do think I will take you up on it one day!

 

His doc administered lidocaine last week, I just found out...is that standard?

 

(While I hate that I have to learn about this, I'm happy that I can keep on asking you questions. Thank you for that.)

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The lidocaine was probably an SPG nerve block, I would think (could be wrong).  That, of course, could be why he's been feeling better (as opposed to the magnesium and B).  Or vice versa.  Here's some info about SPG nerve blocks.  https://americanmigrainefoundation.org/find-a-doctortreatment/treatment/sphenopalatine-ganglion-blocks-in-headache-disorders/ Also a treatment with very mixed results.

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Hello, Anita

 

Your testimony brought me to tears cause I am also a spouse of a terrific guy that suffers from CH, so really girl, I get you... I can identify with your need to help and doing something about it. My heart truly breaks everytime I see him go through a crisis. 

What I have done, and that it isnt really different from what you suggest, is being there with him and backing up his decisions. For example; he  decided that he wanted to try out mushrooms after a long medical treatment that didnt worked for him, so I stand by him in every decision that he has made. If he decides that he wants to go back to regular meds I will also be by his side.

 

I believe  most importantly is to trust that he knows his dissease and his body and he will make the right choices for him. You can do, as I do: read about new treatments, contact the best doctors and make this information available to him but ultimatly he is going to choose. So we can only accept and reséct that.

 

Sometime I feel the desire of doing something more...Maybe here in México ( were I live) a support group, a non profit organization, a fund raise so more people can be aware of this dissease... So lets see if that happens in the near future. Maybe you, and other spouses/ fathers/ sisters/mothers can joy in.

 

Lots of love and support for you...

 

 

 

 

 

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