Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
and another newby (Read 3353 times)
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
and another newby
Jun 1st, 2013 at 5:09am
 
I'm Sean from western Washington and have been checking in on this site for years now and you guessed it, only when I'm in season- Spring and Fall, 6 months to 2 years apart, a couple of times out of season like Christmas or summer. This spring she's a little late, usually it's March or April. My reasons for finally posting for the first time is say thanks for the people that created and run and post on this site. The info I've gotten here has literally saved me much pain. Second, I'm having the worst episode in years and third, there's something I do that I've never read about that works every time, If I'm up to it. Back in Sept 1996 at the age of 43 these wonderful things entered my life, Doc prescribed prednisone, I refused the stuff ( my Grandmother had arthritis and was on the stuff for years, nasty side affects), that really upset him, said my smoking was to blame and If I didn't quit I deserved the pain I was getting. So I went home and suffered.It didn't take long to figure these monsters have a pattern and I couldn't understand how they knew it was nighttime. Seriously? 55 minutes after going to bed almost to the minute and then every one and half hours after that, night after night. Daytime they were noon and 6 pm. I decided back then that it was my metabolism slowing down- bedtime, lunch time, dinner time so I decided to fool it. Just before going to bed I went out and ran my butt off and that night slept like a baby. I got you now you monster, next night I ran again and went to bed- 55 minutes later- here's Johnny and it was coming on strong but I got up(can't stay down anyway) and ran around the block, halfway around and not 5 minutes in I could feel it draining out, turned around and walked home. Hour and a half later- repeat. Since then I've discovered it will kill the monster every time but you gotta get really winded. Jumping jacks don't work and  hyperventilating doesn't work for me, only running till I'm gasping for air, being a smoker it doesn't take long. When I found out about oxygen years later(on this site) it made perfect sense to me and yes it works for me too. Imitrex 50 mg at bedtime usually gets me thru the night but the ox backs that up when it doesn't. I hate drugs so I try to stay off of Imitrex during the day but this episode is pushing to new levels. Oh by the way, no partying till this monster runs it's course. Thanks for letting me vent and maybe now I won't feel quite like a voyeur anymore.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: and another newby
Reply #1 - Jun 1st, 2013 at 9:08am
 
Glad you stuck your head in Sean. I used to use the running abort technique in my 20's, before I had oxygen. Back then my only abortives were cafergot and lidocaine snorted up the nostril! (Oh the early 80's were a sad time to be a CH'er!)

Follow this link to the medications section of this board and read the post 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #2 - Jun 1st, 2013 at 4:26pm
 
Thanks for the welcome, started 3600 mg fish oil that has a total of 1080 mg of omega-3 in it and 10,000 mg of D3 this morning and I'll  keep you'all posted. Those 2 links unfortunately didn't work but I think I'm on the right track.  Sean
Back to top
  
 
IP Logged
 
Genisis
CH.com Newbie
*
Offline


Addicted to Android/Linux


Posts: 21
Denver, Colorado
Re: and another newby
Reply #3 - Jun 1st, 2013 at 7:06pm
 
Welcome Sean.  I have often wondered if running would do anything to help.  Have felt like running to try it and see, I might just do that now after reading your post.
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #4 - Jun 1st, 2013 at 7:50pm
 
Running works for me but just like oxygen the sooner the better though I've kicked em with when they're full blown too. Running with your head exploding is actually kind of satisfying, I think it gives the distraction I seem to need, it's at least better than rolling on the couch crushing my head with my hands or pushing the kitchen counter through the wall  like I used to do. There's a catch though, after a long night of killing them you're not only tired, you're exhausted and that seems to make em more frequent. Now you really need your sleep and you know what comes with sleep. But most nights one run was enough till the morning headache woke me up. I'm almost 60 now and getting lazy- oxygen is way easier. Still, if one's caught away from home and unequipped like I was this time it's an alternative. If you do run, don't run where you need to be super alert to your surroundings, that's hard to do with your head exploding and your eyes half closed.  Sean
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: and another newby
Reply #5 - Jun 1st, 2013 at 7:52pm
 
Hi Sean and welcome

Don't be scared away from prednisione. For CH it is normally used for just short term relief in a taper dose over about 7-10 days whilst a long term preventive builds up to an effective dose. It is not used long term where most of the problems kick in, although even in the short term it can make you eat anything, get acne and a few other things.

You too have found that exercise can help chase away a CH, although for some people it is the opposite, so given how CH can vary between cycles do review how much it helps.

Imitrex tablets at night are not the best preventive. Imitrex really should be used as an abortive for when a CH arrives, using the injection / nasal spray as the tablets take too long to take effect.

Are you taking anything else as a preventive? Something like verapamil / lithium / topomax? Overnight CHs can also be prevented using melatonin.

You mentioned no partying. I assime that this is to avoid alchohol as this for most people with CH is a sure fire trigger for a CH to the extent that many use the "beer test" as a way to check that a cycle really is over after no CHs for a while.

Do vent away whenever you need to, we all understand.
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #6 - Jun 1st, 2013 at 8:43pm
 
Hi Mike, That's right - no alcohol for me and nope, nothing else. I started taking half a 100 mg Imitrex years ago and it's been my drug of choice ever since. Takes a hour to kick in, first headache arrives in that same hour and it's worked perfectly for a lot of cycles. Usually I get 7 to 8 hours of sleep before the morning monster arrives which sometimes is a real doozy. This time around though they're pushing right through the Imitrex so now you know why I'm here. I will definitely try the melatonin- is it a new idea? Prednisione maybe next if I don't get a handle on this. In the past I've always ridden out the 6 to 8 week cycle                                                                                                      
  Thanks for the feedback,   Sean
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: and another newby
Reply #7 - Jun 2nd, 2013 at 1:42am
 
I'd discuss with your doctors using something like verapamil as a preventive rather than using the sumitriptan as that is likely to cause rebound CHs being used every night as a preventive.

Melatonin has been used for a while with some people getting good results. It's mentioned in a lot of topics - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

For prednisione I'd only consider using it for 10 days at the most to avoid the worst of the side effects, so for a 6-8 week cycle it should only be used whilst a longer term preventive, like verapamil, builds up.

Also do look at using the vitamin D3 that many of us have had great success with. Over 80% of people using it go pain free, some now over 2 years!
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: and another newby
Reply #8 - Jun 2nd, 2013 at 2:11am
 
Hi Sean,
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #9 - Jun 2nd, 2013 at 2:30am
 
I learned about the D3 and fish oil supp in the wee hours this morning so by 11:00 am I downed the pills and so far today has been pretty good. It's about 11:30 pm here now so crunch time is coming soon. The next few weeks will tell the tale so I'll keep my fingers crossed. If something so simple works they're gonna have to make an app for sending hugs across the internet       Thanks Guys,   Sean
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: and another newby
Reply #10 - Jun 2nd, 2013 at 2:36am
 
Hi Sean,
Thought this might be of some interest. Melatonin is what our
Biological Clock (Hypothalamus ) release's naturely to promote
sleep. Some folk are lacking Melatonin and suffer from sleep
apnia.

Hoppy. Smiley Smiley
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #11 - Jun 2nd, 2013 at 3:10am
 
Thanks Hoppy, My wife thought she had some but couldn't find it, so it's on the the shopping list for tomorrow. I don't think I have sleep apnea but any safe otc is worth a shot.   Sean
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: and another newby
Reply #12 - Jun 2nd, 2013 at 5:38am
 
G'day Sean,
I forgot to mention, as Mike pointed out. In recent study's,
Melatonin has aborted CH attacks when sleeping.         

Hoppy.
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: and another newby
Reply #13 - Jun 6th, 2013 at 12:44am
 
Hoppy, I'm day 5 on D3 and day 4 om Melatonin at bedtime, things are looking better for this puppy.
Three nights ago-only 2 hits, 2 nights ago 1 hit, last night 0 hits, even woke up with a clean and clear head, no shadows or rebounds even though I'm still taking my 50 mg Imitrex tabs.  This keeps up and I'll drop those tabs for a test-- I've never had an episode back off at week three before so I'm hoping for the best.
  Thanks Hoppy for pushing a little on the Melatonin and Thanks, Batch, whoever you are.
        Sean
Back to top
  
 
IP Logged
 
repguy2020
CH.com Junior
**
Offline


I Love CH.com!


Posts: 71
Canada
Gender: male
Re: and another newby
Reply #14 - Jun 6th, 2013 at 5:04am
 
Good luck Sean. I hope you find the solution to the ghastly things. I also hope they stay solved. We all know how The Beast likes to change things up every now and then, just to keep us on our toes and in punishment.
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: and another newby
Reply #15 - Jun 6th, 2013 at 10:06am
 
G'day Sean,
Thanks for keeping in touch. I was pleased to hear your good
news, now you have to keep all your fingers and toes crossed,
and continue what your doing, and i'm hoping it keeps the beast
at bay. Smiley                                                            

Good Luck, Hoppy.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!