New Member Looking for Help for Husband

[Skyhawk5]

That's the O2 mask I'm talking about, the O2PTI sometimes called the opti. It's the best. I like it so much I sent in a testamonial and they are using it under "what people are saying about the O2PTI." Well worth whatever the cost.

Sorry for the confusion, I thought Jen had posted the link. Glad to hear Dan is getting the O2, I wouldn't trade mine for anything. With my setup I stop well over 90% of my attacks with just O2.

Good Luck, Don

[hotrodsue]

Hello everyone, we've had a busy couple of days. By the end of the day Friday we had the Zomig, Verapamil, and 02. The 02 came with a mask, but, it is not a non-rebreather. The delivery guy had a mask with a bag on it and told us that was more complicated and used in hospitals. I wasn't sure if the "bag" makes a mask a non-rebreather and he did not seem to be familiar with the term non-rebreather. I believe I'll go ahead and order the opti mask $25.

We did get a few interruptions and I was trying to be in on the instruction that was being given. At the same time I was trying to get back to my info online to be sure we were getting the right stuff. The regulator only goes up to 8 lpm. We have to get the doctor to write for the higher lpm and they'll provide that. Sorry for all the rambling.

Zomig seems to have helped, but the headache does come back. From what I understand about the 02, he doesn't seem to be getting that properly.

Questions:

With the 02, do you take deep breaths? I'm looking for specific instruction on how to use the 02. I'll look for a YouTube video, but appreciate any input from you all.

Does a mask with a bag on it mean it's a non-rebreather?

We got a wrench to turn the 02 off and on. Online I'm seing some tanks with a knob, it seems easier to use. Can I just requst a knob or order one?

Dan has experiences some sniffling and sneezing. He also complained of some shortness of breath this morning. Does anyone here experience these side effects?

Forgive me if I'm repeating myself OR if you have already answered my questions. I've read so much in the last week and it's hard to remember what's what. I'm sure we'll do better in time. Thanks again!

[SandyV]

Y'all, don't Pete and Michael have specific written instructions on proper o2 use? I think I recall seeing that somewhere.

Sue, we'll get you the answers you need, ok?

Did I mention you absolutely ROCK?! You are a great supporter and I am so pleased to have met you :)

[Skyhawk5]

viewtopic.php?f=11&t=28

The above is a link to some info on O2. Yes the mask with a bag is a NON-REBREATHER the mask without a bag is a rebreather. It's common for the delivery people to know little about these things and the same of Dr's. Most often we have to teach both the proper use of O2 for CH. Until you can get a proper mask you can use the rebreather by taping the holes shut on the side of the mask. Then breath deeply and lift the mask to exhale. We need pure O2 with no outside air. Sitting up straight also helps let the lungs open to the O2. Not the best but better than nothing.

I've been using O2 for over 20 yrs and just last year I was given the wrong mask even though I asked for a non-rebreather. They had to order some cause they had none in stock. Make sure the prescription reads "NON-rebreather" and 15lpm. If the Dr is unwilling then you can get your own. Let us know if you need help finding them.Regulators I've bought are from http://www.medline.com and http://www.floteco2.com. If you buy one I suggest one that goes to 25lpm at least. If we don't need that much we can turn it down.

I'm sending you a PM with my Ph#. If you need to you or the hubby can call me.

Don

[hotrodsue]

Sue, we'll get you the answers you need, ok?

Did I mention you absolutely ROCK?! You are a great supporter and I am so pleased to have met you :)

Oh, thank you so much SandyV. BTW, do you prefer Sandy or Jenn?

Don, thanks for the info to help make the O2 work the best we can for now. I've called the O2 provider and faxed the doctor. Hope to get the 15 lpm regulator and mask by this afternoon. The largest regulator the O2 company has is 15 lpm. Good to have the links you provided should we need to purchase a higher flow rate regulator. Thanks for the PM, I believe I'll give you a call here shortly.

Dan had a very bad night. It seems the verapamil is causing a lot of stomach trouble and shortness of breath. The side effects on top of the HA, he's really suffering. He's chosen to stop the Verapamil, which I support. And we're both wondering if he should try something else. As different things works for different ppl. So, I'm back to looking at meds and he wants to look at potentional side effects. His biggest concern is paying so much for meds and them not work. We're very hopeful that once we get the O2 properly set up, that will help.

[Skyhawk5]

I wouldn't buy anything for the O2 until you are sure it is what Dan needs. I used an 8lpm regulator for many years and aborted up to 60% of my hits with it and the right mask. Not everyone needs the higher flow but for some O2 doesn't work unless it is higher. It comes down to being able to take a full breath or hypervenalate without emptying the bag.

Verapamil takes at least a couple weeks to build up in our system to work. But if Dan is having problems with it.... Most of us take high doses, 480mg/day for me, some much higher. I also take Lithium 600mg/day, it does help.

Most important with the O2, don't hesitate, as soon as you feel it hit the O2 hard.

Good Luck, Don

[Jen]

Hey Hot Rod!!!!

Sorry I haven't been around, but I've been thinking of ya'll. I knew that you'd be in good hands with Jen and Don...their a couple of gems and I love 'em both dearly.

I agree with Jen....you are one heck of a supporter and we are sure glad that your here

[hotrodsue]

We got the Optimask yesterday and the 25 lpm regulator this afternoon. With the O2 you say to use it at the first sign of an attack. Dan has been in this cycle for nearly 5 weeks. He has, I think, what are considered attacks a few times in a 24 hour period. When the pain isn’t real severe, he’s still in quite a bit of pain. Question: Does the O2 work for the constant pain?

It seems like we are unable to get ahead of the pain. The O2 seems to be a good treatment, so I do suggest it when he’s in pain in general. Of course, we just got the proper set up this afternoon.

Yesterday, Zomig kept it at bay, but didn’t take the pain away. Dan has an anti-inflammatory (Indomethacin ) that was written for tennis elbow. He had some left and tried that, it seemed to help. The doctor said that would not be good long term. It’s a little hard to know which direction to go with med choices. So, I’m wracking my pea brain for ideas on meds. I think that I think too much sometimes.

I’ve found a couple of sites with info on meds, I’ll post here in the event they are helpful to anyone. I’d like to find a good combination of long term and short term. I’ll keep trying the neurologist to see if we can get in any sooner. In the meantime, I’ll do my best to research things to try.
Here are the meds links:

This link has some meds in Maintenance Therapy, including Indomethacin. However, it says “considered, but not recommended as routine treatment”. I’m probably confusing myself here.

http://www.guideline.gov/summary/summar ... 2&nbr=4142

This link is from the Mayo Clinic website.

http://www.mayoclinic.com/health/cluste ... -and-drugs

This link gives great information on medicines:

http://www.headaches.org/education/Medications

Thanks for the links to the Optimask and the Regulator. Thanks for the encouragement and support.
Of course, I welcome any thoughts on the medicines. I’m going to call it a day. Have a great night all.

[SandyV]

Sue, you are right in looking for the right combo of meds, but for each of us its different. It does take some trial and error unfortunately, but don't get discouraged. Even when y'all do find the right combo, be aware that what works one cycle may not work for the next. The nature of the beast we live with.

Keep working with Dan's neuro and remember to log all reactions, side effects, meds taken, dosage, etc. You might think you'll remember, but you probably won't. Write it down and take it with you at each visit.

Good night to both of you. Sleep well and Dan- sending vibes for a pf night!


Jen

[Jen]

Great words of advice from Jen. What used to work for Phil doesn't work anymore and it just makes things worse. He sticks with his Verapamil and his O2 and energy drinks and some other alternative meds.

Sending wishes for some PF time