Hey Folks,
I've read and searched and didn't find an answer to my specific question. I'm 44 and have been episodic for over 30 years. Normally go through episode every 18-24 months. This time I luckily went almost 3 years. Guess the beast was saving up because whereas I normally got 1 or 2 per day, now I'm getting 2-3, sometimes 4.

Anyway, on to my question.......  For first time I'm trying o2. For the last two nights I got CH at 10:30, then got on o2. 15 lpm with non-rebreather mask. Completely aborted after 17 min (yeah!). Stayed on o2 til 20 min. Went to sleep. Beast returned at 12:30 (boooo!). Repeated o2. Same result. Went to sleep. Beast returned at 2:30. Hit the trex, no more (well, until 10:00am  >:(. Last night, same thing except after reading some of o2 stuff here, I stayed on o2 for 25 min. Same result.

I've gotten 2 CH at night before, but never 3. And never so close together.

Any thoughts? Is this just a particularly bad episode? Am I not staying on o2 long enough? Need higher flow?

Btw, last night for the 3rd visit I knew I'd have to ride it out (running low on trex). I had read about starting vigorous exercise at onset. So when #3 started I got up and started doing burpees. Completely aborted after 10 minutes.

This seems to be a bad cycle. I'm a month in and have been getting 3-4 per day, whereas I normally get 1-2. And the ones I've had to ride out are kip 8-9.

Thoughts from the community welcome.

Your results may be different but a higher flow will normally abort in 5 minutes. Sometimes mine return after a couple of hours, sometimes they don't.....

If you haven't read the following yet you owe it to yourself to do so.

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Good Luck,  Don

Mark,
That sucks and we can relate!  Read as much as you can about o2.  The important thing to remember is when you awake w/ a CH, you are already behind on timing against you, so get to the o2 ASAP.

Hyperventilating will abort faster and more successfully than just breathing.  The idea is to get rid of the co2 by exhaling just as hard as you inhale deeply.  The faster the better.  This requires high flow rates such as 40 lpm.  After the abort, you should stay on the o2 (lower flow rate typically ok such as 25 lpm or 15 lpm) and breath deeply in and breathe deeply out.  Do this for about 10 or 15 minutes AFTER you are PF.  This should help lessen the frequency btw attacks.

O2 therapy is exhausting and requires ALOT of patience, especially in middle of the night.  It is so much easier to just abort with an Imitrex injection within 5 minutes.  However, the trex causes rebounds for most of us and of course it is a drug (harmful), expensive and supply is usually limited.

Hang in there!

LasVegas wrote on Nov 3^rd, 2011 at 10:11pm:

................................... O2 therapy is exhausting and requires ALOT of patience, especially in middle of the night.  It is so much easier to just abort with an Imitrex injection within 5 minutes.  ......................

So very true.

markca wrote on Nov 3^rd, 2011 at 8:00am:

whereas I normally got 1 or 2 per day, now I'm getting 2-3, sometimes 4. got on o2. Beast returned at ... This seems to be a bad cycle. I'm a month in and have been getting 3-4 per day, whereas I normally get 1-2.

Every two hours at night is familiar using abortives, there are those difficult times of an episode.  A preventive med worked in can help reduce hits, even eliminate most.  May be worth a try with your doc.

Thanks for all the input. Some trial and error and I'm getting much better at it. First, I looked back at my log and saw that I had a few nights where I had another CH within 2 hours at night even after using the trex. So it wasn't just the O2. I found better results if I just stayed on the O2 for an extra 5 or 10 minutes. My gut tells me I need a higher flow rate, but my regulator only goes up to 15.

This is an especially bad cycle. In the past I only had 1 or 2 per day and I respond really well to the trex. Relying on the trex, I'm convinced, extended my cycle, added CHs, and made the ones at the end of the cycle really bad. Ive gotten as many as 5 in the last week. So learning a lot more. Funny how they change.

I was on prednisone the first couple of weeks. That helped. My Dr. Is admittedly out of his comfort zone with these, but he's very helpful. Just about every neurologist I call says they can work me in sometime early 2012! Yeah, that's helpful....

Regarding it being exhausting and requiring patience, that is so true! Now that I'm confident it's working, it's easier to gut through the pain knowing relief is coming.

Thanks again for the responses and for keeping this website active. I only pop in every couple of years when I go through a cycle. This place has the best, most up-to-date info out there.

"5 in the last week" would've saved my relationship of 4+ years and my job of almost 2 yrs.  I average 8+ daily and am in week 13 after a 6 yr remission.

Go with your gut and go high flow! Re-read what I posted previously about hyperventilating, this will no doubt make you PF quicker.

If you can not get a script for a 0--60 lpm regulator, you can get one same day from a welders supply house.  A welders regulator will be wonderful for you providing the ability to get rid of the co2 fast.  Also, consider an energy drink (Redbull/Monster/Rockstar/etc) before/after o2 therapy.  The energy drink content of 1000mg of Taurine and Caffeine combo SLAMMED FAST at the onset of torture by the DRAGON followed immediately with the hyperventilating of o2 should be of assistance reducing the inflammation/pain.

Look at the OUCH tab on the left side your screen and you may find a recommended doctor near you that may provide a quick intake. 

Good Luck and PFDAN!

Oooops, I meant 5 per day in the last week....  8 per day.... wow.....

6 last night btw 10:30pm and 7am, i'm not well either...hang in there, we need to be strong for others who are important in our lives

I feel for you. I've read some of your other posts in other threads. I'm praying you'll get relief soon. We seem to be similar. I've been episodic since I was 11 or 12 and I just turned 44. You'll get through this.

Mark, thanks for your kind words, yes we will get through this.  Easier said (written) while temporarily PF, but somehow after all these years we are still alive, right?

You and I have both been suffering since about the same age-11 yrs old and are about the same age now-i'm 43, you are 44.  Mine started right after a closed head injury.  How about yours?

Did you order your high flow regulator or pick one up at a welders supply company?

Being on the 02 for 20--25 minutes while in pain in middle of the night when you're exhausted is only necessary with low flow regulators or if you get on the o2 too late or of you have respiratory problems, etc. 

Based on what i've read from you, getting a high flow regulator will offer you tremendous relief in less than 10 minutes. 

Welders regulators ca be purchased for less than $50 bucks and the custom made high flow regulator (o lpm -- 60 lpm) cost around $130 bucks. 

If you want the high flow regulator, PM me and I will give you the contact info of a very helpful lady who works for Flotec in Indianapolis.  Shipping time is about 2 weeks.

Have you tried slamming a Redbull, Monster, Rockstar or other energy drink containing 100mg of Taurine and Caffeine mix prior to o2 therapy? 

You wrote you tried Prednisone and your doctor was helpful, yet out of his comfort zone.  Curious if you are taking any preventative meds such as Verapamil, Topomax, Lithium, Zyprexa, etc?

Keep us posted on your progress.  Hang in there and be tough!

I didn't have any injury that I could point to that started my CHs. But I played sports and rode bicycles and motorcycles and skateboards. It's quite possible one of my many spills is connected, but I was never hospitalized or anything like that. I just remember getting them every day in the lunch room.

I have not ordered a high flow regulator. I plan to but just haven't yet. Kinda need to wait on my next paycheck. Ive spent $2000 on imitrex in the last month. Wish I hadn't since I've learned this go around that the o2 works so well.

I did a low dose of prednisone the first 2 weeks. 20 mg/day for first week, then 10mg/day the second. Wasn't pain free, but substantially fewer. I'm convinced the prednisone jacks up my cycle. The last three cycles I've done prednisone for two weeks. Then once I'm off the prednisone it's like the beast was just saving up. In all my cycles I got only 1/day, sometimes 2. But in the last three cycles I'm almost PF during the prednisone, but then horrible kip 8/9, and 3-5 per day. That and I think the cycle is extended as well. I also know these can change. So who knows.

I think my plan for the next cycle will be ready with high flow o2, red bull, and some trex. We'll see.

No preventatives now.

Yeah, Ive tried the Red Bull. Certainly seems to help. Thanks!

Welders regulators available near you in Atlanta:

Harbor Freight Tools has regulators for $29.99

Here is a link to the regulator
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Store Locations Near Atlanta:
DUNWOODY GA #364 (13.2 mi)
4776 ASHFORD DUNWOODY RD., STE A
DUNWOODY, GA 30338-5568
Phone: 678-579-9854
Now Open!

LILBURN GA #148 (17.4 mi)
4805 LAWRENCEVILLE HWY NW, STE 280
LILBURN, GA 30047

FAYETTEVILLE GA #352 (18.8 mi)
1415 HIGHWAY 85 NORTH, STE 200
FAYETTEVILLE, GA 30214
Phone: 770-461-5521

DOUGLASVILLE GA #350 (21.9 mi)
7424 DOUGLAS BLVD
DOUGLASVILLE, GA 30135
Phone: 770-949-7052

ATLANTA NW GA #110 (23.3 mi)
4290 BELLS FERRY RD NW, STE 126
KENNESAW, GA 30144
     

Thanks!

I picked up a used CGA-540 welding regulator for my m-tank for like $45 shipped on ebay.  Be patient and keep checking.  A cheap one will turn up.

-Dennis-