Josh, His last full headache was Monday night, but it was an odd time of day for it.  Before that, he had 3 pf days, and today, he had a shadow, but it didn't go into a full headache, and he didn't use anything to abort it because it just stayed shadowy.  So, 3pf days, 1 CH, 3pf days, shadow today.  He's sure they're on their way out, compared with 3-4 per day he was getting about two weeks ago.  You get so sick of them, you are almost afraid to believe they're leaving, because the alternative would break your heart.  He's still sleeping with a low flow oxygen (that seems to keep them at bay during the night) and taking Immediate Release Verapamil.  He'll keep that up for a week after his last CH, and then he'll start to taper the dosage.  Spring is changing to summer, and they'll be gone soon.
Lynn

chwife wrote on Jun 14^th, 2010 at 10:28pm:


Boy, does that story ever ring bells.  Not exactly the same, of course, but there have been times...    

After several years here, it's still a daily astonishment to me that there are others who truly know what happens to us, and what we do to get through them.

Quote:


Thank you for sharing a part of your life with us here, and thank you for supporting our brother clusterhead.

Best wishes,

George 

So Birdman......tell us "did you bust?"  How are you?  Always on my mind!!!! 

Sending  you pain free wishes!

CHWife,

I hope re-upping the verapamil works, I hear you on the thinking the worst is over. My wife won't even comment when she notices I didn't go to the basement to hit my tank that night, she is afraid of jinxing it. I believe we are a pretty optimistic group and when we get a few PFDs we start to get ahead of our selves, at least I know I do. Good Luck and hoping again for PFDs for your husband.

David

I know what you mean when you said about being self employed and not able to work the next day very well. Jeremy

jmac wrote on Jun 2^nd, 2010 at 6:09am:

Jeremy,
My husband is the only one I have heard of that does this. . .he sleeps with low level oxygen all night.  The result has been like night and day.  Earlier cycles have woken him up to the point where the sleep deprivation was making his (and consequently, my) life a living hell.  He talked to our GP and she put him on low level oxygen all night long.  With the exception of a hand full of headaches since Easter, it has worked.  I think a trigger for him is sleep apnea, or low oxygen levels in the blood, but he has not been tested for SA yet.  During this cycle, he is so happy that he gets sleep, he hasn't gone back to the doctor.  The machine he uses at night is an oxygen concentrator that delivers 5-7L/min of oxygen.  This is not enough to abort a headache once it starts, but when he breathes it continuously as he lies in bed, it seems to stop them from coming at night.  It worked the very first time he tried it, so if you are low on funds, ask if you could rent one for a few nights to see if it works, if it doesn't work, send it back right away and try something else. . . there are plenty of ideas here and it seems that nothing works across the board for everyone.
You could give it a shot.  Good luck & I hope to hear about what you decide to try.
Lynn

Actually, he doesn't use a mask at night (only during the day when he uses the higher flow oxygen for aborting) , just the tube that goes around the head and two prongs that go into the nostrils, and yes, he tosses & turns. . .so about twice a night (I'm a very light sleeper), I reach over and make sure he's still got it wrapped around his head.  He's also changed his sleeping position.  He LOVES to sleep on his stomach, but he has made a point of sleeping on his back and side instead.  That's another thing I check him for if I wake up.  I read somewhere that some people who sleep on their stomach actually cut the flow of oxygen by breathing into their pillow.  At least two times recently, he woke up with a headache after he had pulled the tubes out of his nose.  He's such a deep sleeper, he doesn't wake up until he's well into the CH, so the pain is usually intense and hard to abort by then.  You know the drill.  But we are both so thrilled that he can get some uninterrupted sleep most nights.  I think the sleep deprivation causes an extreme exhaustion that leads to suicidal thoughts. Add pain to the sleep deprivation and you really have a scary situation on your hands.  Beating that sleep issue has made this cycle almost manageable. 

Hi Josh,
Thanks for asking.  I'm so happy to hear that you are done with this!  I hope we don't see you next spring!  I hope you are done forever.  We went on vacation as well, and he backed off of the Verapamil because he thought they were gone, and he wanted to have energy -- it's VACATION!!! Well, he started getting one a day again.  He was also away from his oxygen, and I'm not sure if it was the reduction in meds or the reduction in oxygen, or both, but he relapsed during our vacation.  Since June 30th, since we got back, he's upped his verapamil again and hasn't had a hit.  He's very touchy and has a short fuse - I just want my other husband back!  Hopefully, soon.

It looks like I have my husband back.  I just thought I'd check in to see how you all are doing.  He's weaned himself off of the Verapamil and we've returned the Oxygen.  Next time, we are going to start right away with high level Oxygen therapy.  He used an awful lot of drugs this time and lost 10 pounds.  He is about 5'11" and only weighs 150 to begin with. . .We didn't try high level (25L/min) this time, but I'm going to suggest we do it next time.  Oxygen therapy seems to be the best approach for him at this point.  This was the longest cycle he's ever had, and he started the cycle by addressing the attacks with Relpax and ended the cycle addressing the attacks with Imitrex.  The pain factor was the lowest this time because he addressed all but one headache with meds, and the sleep interruption was almost non-existent -- he was on low level oxygen all night everynight, and I know that this treatment is not believed to help anyone, but we know beyond a shadow of a doubt that it helped him with night attacks.  He woke in the middle of the night only a handfull of times this cycle.  That has never happened in his life, and the only difference this time has been that he was on low level oxygen everynight.  I don't know what to make of it all. . .I guess none of us do.  When you experiment as much as we have, and find something that appears to work, you go with it.  Perhaps oxygen deprivation was one of his "triggers" and maybe he has sleep apnea.  These are things we still need to investigate.

So, I have been thinking alarm clock too! Has anyone tried?
Success?

Share?

Peace,

Boski    

Thank you, Joe, and I hope the same for you and eveyone else who posts here.

jmac wrote on May 26^th, 2010 at 3:50pm:



I completely understand,  I am the same way about drugs, but it is not physically good for you to have the clusters, either!!!  So, I take as little preventive drugs as possible as to not have the ill effects of cluster headaches.  They are debilitating over time!