So, it's been a while since I posted. Last October probably... Anyway, I thought that I had made it through the year with no HA's when I suddenly started getting hit a week before Thanksgiving. I've never started a cycle so late in the year and have certainly never had them in December.

Having said that, I'm a little frustrated with the oxygen. I've been able to abort an attack fairly quickly with the O2 but only to have it return in around 2 hours. If I take a Relplax and use the oxygen, I can abort in as little as 6 minutes with no relapse. I don't want to use the Relpax as I have been on a daily basis for the last few weeks.

Does anyone have any suggestions? Is the O2 rebound normal? I can't live through these every couple of hours. I can't get anything done, I'm crabby and it's the holidays!

Also, if you have any breathing techniques that have helped you, please share. I've been experimenting and usually just deep shallow breaths help, but not always. Feeling very frustrated.

Any help is welcome.

Thanks, as always.

~ Katie

There are a couple of schools of thought on this.......I'll give you what works for me. I had the same problem as you with comebacker attacks. Only mine hit within 10-20 minutes of shutting off the 02. For years I took an oral Cafergot....it's an old school CH med.....the 02 would knock the attack down, the cafergot would push any attack off as much as 12 hours.

Now I drink an energy drink while I'm aborting with 02...literally take swallows in between my breaths. Seems to speed the abort and also pushes back the come backer attacks 6-8 hours. I use sugar free red bull but any of the caffiene/taurine drinks should do.

As to breathing, again 2 schools of thought. Some do best with the power hyper ventilation. Literally breathing as hard, fast and deep as you can, (that's what she sa.....oh never mind ;D)......for the first few mijnutes, then settling down to the deep breathing.

I do the following:

Exhale completely, even trying to cough at the end to totally empty the lungs. Then breath in as deep as I can off the oxygen, and hold it for a slow 10 count, exhale completely, repeat. After a few minutes, I'll hold the breath as long as 30 seconds. Several here use the same technique, like with everything else related to beasty it's mostly trial and error to see what works best for you.

Hope you've got a decent prevent med you're using also,

Joe

Hi Katie

"My preferred method is to count the number of breaths I take to get rid of the hit & then stay on the O2 for the same amount of breaths, I can usually abort a hit with about 80 to 100 breaths but I breathe straight from the bag as I have a beard & can’t get a proper seal with the mask.

The most important thing is to be absolutely sure that you have killed the hit, no "maybe’s" or "nearly", if you don’t ensure its gone before you do the follow up breathing there’s a good chance of getting a rebound hit & that will be even harder to get rid of than the original one."

In my last high cycle the beast had morphed & I was getting hit again within an hour of killing one; I  used to get away with downing a Imigran tablet when breathing the o2 & that would give me an 8 - 12 hour break before I got another  but that stopped working, I eventually worked out that by laying back down with a frozen gel pack on the cluster side after killing the hit I could stave off another hit for about 6 - 8 hours.

Hope this helps
Cheers
Barry

Hey Katie,

See Reply #8 at the following link for the most effective breathing technique to use during oxygen therapy.

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Take care,

V/R, Batch

Thanks for the posts. I will definitely try these techniques. This has been a very strange cycle for me. No pattern - some wake me up, some hit a few hours after I wake up, others are out of nowhere in the middle of the afternoon. I went off of the verapamil. It did nothing for me and was giving me side effects headaches and the oh-so-fun constipation. Needless to say, no prevents for me. Just the O2 and Relpax to abort. Luckily, I only get 1-3 per day and haven't had "the big one" yet in the last month. Most are gone in 15 min or less and I'm PF (just sore/bruised) for 12-24 hours.

Thanks again. I'll keep you posted on how it's going.

~Katie

Hi Katie,
Please correct me if i'm mistaken, but you are able to abort an attack with o2 therapy and get another attack two hours later?  This was unfortunately realistic with me also. 

If you would've written that you are able to abort and get a re-attack within 30 minutes or less, then I would recommend staying on the o2 for 5 or 10 minutes with lower flow rates and just breathe normal yet inhale deeply and exhale deeply.  Hyperventilation at high flow rates (25 lpm to 40 lpm) only required at onset of attack until abort.

You've expressed concern of taking Replax and considering you went off the Verapamil, you might consider slamming a Redbull or your favorite energy drink containing Taurine/Caffeine.  Energy drinks must be chugged down fast and complete at onset of attack and then get on the o2 to abort attack, if needed. 

Techniques of breathing were previously mentioned by others who replied to this thread and agree with their recommendations.  Ask questions if still unsure, but sounds to me if you can abort with o2, you are doing the right thing.

I personally found getting hit with an attack every 2 hours is unfortunately common with o2 therapy and no preventive meds.  This is why a preventive med is so important, to control the frequency and intensity of attacks.

Just curious what dosage of Verapamil were you on before you gave up on Verapamil?

Did you replace the Verapamil with another preventive med?  If so, what med and what dosage?

Be Tough! 8-)

-Gregg in Las Vegas

Thanks, Gregg. I was on 240 mg of Verapamil 2x/day. But the Verapamil headaches are awful. I may try again to see what happens with that and the O2. To date, we have not tried any other prevents.

The Red Bull option has been tried, but the caffeine rebound headaches are just as bad if not worse. It's like the beast is retaliating and he's pissed.

Anyway, thanks again for all of the advice.

I always feel bad complaining about what I'm going through compared to some of the stories that I read here. If I get more than 1-2 per day I'm a mess. Crabby and so on. I can't imagine getting hit every couple of hours and still being sane.

~ Katie

Hi Katie,
Do yourself a big favor and read up on preventive meds.  Use the yellow tabs on the left side of your screen, the google search bar at the top of your screen and look under the many, many pages of threads posted at "Medications, treatments."

There are several preventive meds that have been known to be effective for CH's, but it's trial/error.  You have to be your own advocate armed with your own knowledge to effectively get CH treatment; as there are very, very few medical professionals even aware how to properly treat CH's. 

Plenty to read here on this site for you to look at the pros/cons of each med and decide what you believe is best for your health and lifestyle.

If Verap didn't work at 480mg/day, a higher dose is commonly needed for treatment of CH's. 

For blood pressure and other cardiac indications 480mg of Verapamil per day is the maximum recommended dose. 

However, those who are TORTURED with CH's sometimes require a higher Verapamil dosage for effective treatment.

I just started 560mg Verap and am still being hit an average of 5X/day.  Day = 24 hr period.  Hoping, wishing and praying this 560mg dose provides relief soon as I am starting to finally lose patience.

If you do increase above 480mg of Verapamil, an EKG is highly recommended.  My cardiologist stated he would have "no objection to a higher dose of Verapamil as long as your heart rate stays above 50/min, your systolic blood pressure stays greater than 90 and your EKG remains normal."

I would recommend speaking with your doctor about this about your particular health if you choose to give Verapamil another try, specifically at 480mg+ dosages.

Don't feel bad about complaining as you are a "Newbie."   

Read, knowledge is power, be your own self advocate, trial/error, patience, rant whenever you want, and ask questions to better your understanding of CH's.

You are not alone! ;)

-Gregg in Las Vegas

I have been having the same issues as you Katie. I get woken up at 3 or 5 am hit the O2 go back to sleep and get woken up in an hour with another headache and have to go back to the O2. red bull does nothing for me. im on only 240mg of verapamil right now as i am trying to taper off in order to increase chances of clusterbusting working. probably not the best idea to taper off verapamil right in the middle of the cycle but i decided i have my O2 and might as well try it now since it wasnt working at 360mg anyway. i am also trying Batch's D-3 regimen. Been almost a week on it with no relief yet. i have used O2 for several years and experienced the same rebound sort of headache especially if i go back to sleep. Katie have you tried melatonin at 10mg before bed? that has helped some. it never did anything for me but i know i have read where some have felt it did help nighttime attacks. lithium and verapamil seem to be the most widely Rx'd preventatives. have you tried lithium yet? oh i forgot to ask what lpm are you running your O2 at? I am using 15lpm for 12-15 min and that aborts after about 10 mins and i stay on for a couple more just to make sure it is completely gone.

Funny enough, I haven't had an attack since last Friday. Just a few shadows here and there. Murphy's Law - just had the O2 empties swapped out. LOL

Not taking anything right now so we'll just wait and see what happens.

I have tried melatonin before and yes, it did help with the night attacks. I use O2 at 15 lpm on my E tanks, but my M tank can go higher than that which is good for the deep heavy breathing.

Anyway, keep your fingers crossed that we're done till next fall.

Wishing happy holidays to all and painfree days ahead in the new year.

~ Katie

Good Luck Katie,
Merry Christmas!

Katie, I didn't read through the whole thread, but did anybody mention rebounds from the triptans?  Just something to keep in mind for the future.  Hope the beast never returns to your head a long with everybody else.  I have a huge stockpile of imitrex tabs and injections laying around that I haven't used since oxygen.  I've learned to keep on it after I abort for a couple extra minutes because the CH can come back just like that.  Well, I wish you a happy holiday.

Chad

Katie C. wrote on Dec 16^th, 2011 at 1:11pm:

Thanks, Gregg. I was on 240 mg of Verapamil 2x/day. But the Verapamil headaches are awful. I may try again to see what happens with that and the O2. To date, we have not tried any other prevents. The Red Bull option has been tried, but the caffeine rebound headaches are just as bad if not worse. It's like the beast is retaliating and he's pissed. Anyway, thanks again for all of the advice. I always feel bad complaining about what I'm going through compared to some of the stories that I read here. If I get more than 1-2 per day I'm a mess. Crabby and so on. I can't imagine getting hit every couple of hours and still being sane. ~ Katie

I too got headaches while on verapamil! I went off it and guess what no other headaches and much less shadows!
For me I am convinced verapamil did more harm than good!that being said it helps alot of peeps for sure! Hope the beast is pooped out for u Katie ;)