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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> I Don't Understand
        
(Message started by: the_old_man on Nov 23^rd, 2004, 11:05pm)

Title: I Don't Understand
Post by the_old_man on Nov 23^rd, 2004, 11:05pm

I'm a 27 year veteran of ch. I get them only at night...like clockwork...every two hours. They last 35 minutes. Abortives don't work...O2 etc and I can't take most meds because of heart problems. Pred and verapamil worked once but caused my heart rate to go beserk, so I had to stop. I just go to sleep, wake in two hours, tough it out, and go back to bed. I just finished 18 months pf and on Nov 4 they came back. I've tried xanax and melatonin but nothing works. Fortunately??? i almost never get them during the day. I work 10 hours per day as a damn good computer salesman, and day time attacks would be unbearable. If they strike at night because of rem stage of sleep and seratonin problems, what causes them to strike during the waking hours? Lack of sleep is really starting to take a real toll on me. Getting up every two hours to pace, scream, bang my head, cry, and bang my head with anything handy is getting real old. Any thoughts on the dayime question, and any suggestions to get some sleep? HELP!!!

the old man

Title: Re: I Don't Understand
Post by vig on Nov 23^rd, 2004, 11:14pm

It sounds like that should be a great big clue as to how this all works.
Come on Neurologists, get on the stick...

Title: Re: I Don't Understand
Post by Grandma_Sweet_Boy on Nov 24^th, 2004, 5:48am

Maybe it just has something to do with being old! Not knocking you, my friend, I'm in your same age category and reading your description is exactly what I would write about my cycle.

Perhaps we should present ourselves together to a neuro and see what the answer is. I've never been hit during the day - always at night and I hear ya about the missed sleep and trying to still perform at work.

Let's hope some our friends here can help us out. In the meantime, PF wishes going your way.

Carol

Title: Re: I Don't Understand
Post by Bob_Johnson on Nov 24^th, 2004, 5:55am

See my post under, "CH and sleep apnea". A 100% night time experience at least suggests apnea needs to be ruled out.

Title: Re: I Don't Understand
Post by floridian on Nov 24^th, 2004, 8:17am

Our best understanding is that they strike when they hypothalamus goes haywire. This is most likely to happen at night - both REM sleep and apnea seem to increase the odds that the alarm goes off, but it can happen during the waking hours as well. My headaches are generally at 6:00 am, then after a day or three, at 6 and 4:30 am, then 3:00, 4:30 and 6 am, continuing until they hit shortly after I lay down. They also spread into the waking hours of the morning towards the end of the cycle. In a few cycles over the past decade or so, I have gotten a few in midday or evening (9:00 pm) but that is not the norm for me.

Xanax is good for anxiety, but not sure that it would help at all for clusters. What dose melatonin did you take, and for how long? I was just looking at some research on melatonin for high blood pressure, and it said that a single dose didn't do anything, but nightly doses for a few weeks had a real effect. Also, talk to your heart doc about magnesium and B vitamins.

Title: Re: I Don't Understand
Post by the_old_man on Nov 24^th, 2004, 9:29am

The first nite I tried melatonin, I went with 9mgs, because most people said that was what worked. I slept right thru the nite pf. The second nite I went with 9 again and it had no effect. I had my usual three visits from the beast. The 3rd nite I tried 6mgs...no effect. The 4th nite I tried 3mgs...no effect. The 5th nite I tried 12mgs. Still no effect...still 3 visits from the beast. Nite number 6 I went with 6mgs of time released melatonin. No effect. At that point I gave up on it.
I do take B vitamins, potassium, and magnesium every day. I do however drink about 8 to 10 cups of coffee a day. I have no trouble falling asleep at nite. Usually in 3 to 5 minutes I am dead to the world. My problem is in being able to sleep the entire nite without the beast visiting. I usually get up at 5:30 in the morning. If I go to bed at 11, I'll get 3 visits...about 1am, 3am, and 5am. If I go to bed at 12, I only get 2 visits because my alarm clock goes off before the third one strikes. When I'm having an attack, I rub BenGay on my forehead, temple, and across the bridge of my nose. It tends to make the eye water more than without it, and it makes the nose run...breaking up the stuffiness. When the stuffed nostril finally clears and begins to run, the attack is over. I don't know if the BenGay hastens the end of the attack or not, but it gives me something to do during my dance.

The Old Man

Title: Re: I Don't Understand
Post by becky8 on Nov 24^th, 2004, 9:57am

Are you using both time-released and reg melatoin? Also I have read this and found it to be true. You have to try different brands of melatoin cause even though they say they are the same amount (like3mg) they are not always. Because its not a drug it doesn't have to regulated by the FDA. So try a different brand and don't use NATURAL ones. I had the same problem where it worked for like a few days and then didn't til I changed brands. It's worth a try, and lay off the coffee???

Title: Re: I Don't Understand
Post by becky8 on Nov 24^th, 2004, 10:00am

Sorry, I should read more carefully. I see you have tryed the time-released but try a different brand, cause I had the same problem til I changed.

Title: Re: I Don't Understand
Post by thudpucker on Nov 24^th, 2004, 4:48pm

Xanax may lower your blood pressure, and could therefore trigger an attack.

My ch's come on the same 90-120 minute night time schedule as yours, rarely during the day.

Try 6mg of melatonin and a shot of Benadryl. Might not do any good, and you can't use antihistamines regularly without their losing their effectiveness, but it won't hurt. I do get relief from the antihistamine, and I sleep like an absolute brick when I take both melatonin and Benadryl a half hour or so before bedtime.

Title: Re: I Don't Understand
Post by the_old_man on Nov 24^th, 2004, 5:49pm

Thanx Thudpucker. I'm gonna try that cocktail tonite. You guys are great!

The Old man

Title: Re: I Don't Understand
Post by Ruth on Nov 24^th, 2004, 6:06pm

Hi Old Man,
Isn't this a great place to learn? I get hit mostly at night, but sometimes during the day, the lack of sleep is really a bummer. Sometimes the hits would come every 2 hours and with that you are not getting any rest.
I wish you well and I am sorry you haven't found something to help you out yet, but keep trying.

Ruth

Title: Re: I Don't Understand
Post by marlin on Nov 24^th, 2004, 6:07pm

Man, you can still tough it out after 27 years? I don't know if prednisone is problematic for those with a heart condition but I would suggest that you investigate. So far the pred taper is working OK for me. I also have luck with O2 and trex. I tried the melatonin. Didn't do anything for me either. Maybe mixed with the benadryl but so far I don't need to do anything else.

Title: Re: I Don't Understand
Post by the_old_man on Nov 24^th, 2004, 6:48pm

Hey, Marlin. The human body is an amazing thing. You can get used to about anything. Knowing that it'll all be over in about 30 minutes helps. It'll hopefully just go away in a few more weeks then I'll be home free...until next time. Tried the pred taper and it worked immediately. That was about 8 years ago. It never worked again after that first time. Lithium worked but I can't take that. Verapamil worked for one cycle, but not for the next one. I can't take that now either. Funny...the heart can withstand the intense pain, elevated bp, rapid heartbeat, and shallow breathing of a ch, but it can't stand up to those meds.

The Old Man

Title: Re: I Don't Understand
Post by the_old_man on Nov 25^th, 2004, 7:31am

Hey Thudpucker,

I tried the melatonin/benadryl cocktail last nite. I took 9mgs of melatonin with 2 tsps of benadryl for a chaser. I went to bed at 10:30 and was sound asleep before my head hit the pillow. Remember...my pattern is to go 90-120 minutes between each attack and I get 3 each nite....kip level 8 or so each time. I woke up at 4:30 coughing with a constant tickle in my throat. It was a dry cough and I could feel tightness in my chest...perhaps the benadryl drying up the congestion. I got up for a cough drop and went back to bed. Within 15 minutes the beast attacked. Usually I wake up because of the increasing pain of the beast. This time it came on while I was still awake. I got up to do my dance, but this one was a kip 3 and lasted 12 minutes instead of 30. That one was a piece of cake to handle. I went back to bed and slept until 6:30 when the beast hit again...the usual way with the pain causing me to wake up. I rolled out of bed silently cursing everything and everyone my tortured mind allowed me to recall. I started my dance and checked the clock to see how long I had left, bracing myself for the usual kip 8 for the next half hour or so. But this one stayed at a kip 3 and lasted 15 minutes. For me that's just about pf. Gonna have to look at some kind of modification for tonite, but that certainly changed my pattern. Maybe I'll go with 6mgs of melatonin with only 1 tsp of benadryl for a chaser.
Sorry this is so long, but I wanted to let you know exactly what changed and thank you for taking the time to try to help an old man out. I'll tweak the cocktail tonite and see what happens. Thanks again.

The Old Man

Title: Re: I Don't Understand
Post by sailpappy on Nov 25^th, 2004, 9:26am

;;D You Might ask your Neuro to try you one Trazadone, It has helped me somewhat but I only took it a few times.
http://www.healthsquare.com/newrx/des1128.htm

It's for depression however it is quite commonly used as a sleep aide, its a seritonin uptake inhibitor and can help you rest.

Personally, I have the same problem with the sleep pattern interuptions, 34 years and no end in sight!
Pappy