New CH.com Forum

livin on pins

CH.com Newbie

Offline

Posts: 14
Gender: male

Hey
Jan 5^th, 2009 at 6:57pm

Hi everyone, ive had chronic cluster headaches for about 4 years now, just about everyday, anywhere from 2-6 attacks. Its been pretty rough, i failed my first year of University because i couldnt focus in class and by then it was the 3rd year of headaches so i was severely depressed. Im happy to say this year went alot better for me though, over the summer i found this site and know that there are lots more people like me out there. Anyways just wanted to post somethin to let you guys know that theres one more on board

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

MITYRARE CH.com Old Timer Offline autocross racer Posts: 361 Ontario, Canada Gender:	Re: Hey Reply #1 - Jan 5^th, 2009 at 8:05pm Welcome LOP, Nice to have you along. How are you curently managing your headaches? Paul
Back to top	Paul "car crazy" IP Logged

livin on pins

CH.com Newbie

Offline

Posts: 14
Gender: male

Re: Hey
Reply #2 - Jan 5^th, 2009 at 8:35pm

Hi Paul, currently i'm taking Topiramate 2x25mg twice aday which has weakend the intensity of the headaches but not so much the frequency, i also have Maxalt for my day longs which occur two or three times a week. I started taking yoga and breathing exercises just for piece of mind but it really hasnt done anything noticeable to date. I was previously on Verapamil which did not help, while switching between Verp and Top i was on Prednisone which worked wonders but apparently thats not for longer term use which i found rather dissapointing

Back to top

IP Logged

thebbz Ex Member	Re: Hey Reply #3 - Jan 5^th, 2009 at 9:01pm Welcome here's some reading if you haven't studied yet. the bb Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Nice to have you around
Back to top	IP Logged

MITYRARE

CH.com Old Timer

Offline

autocross racer

Posts: 361
Ontario, Canada
Gender: male

Re: Hey
Reply #4 - Jan 5^th, 2009 at 9:57pm

livin on pins wrote on Jan 5^th, 2009 at 8:35pm:

Hi Paul, currently i'm taking Topiramate 2x25mg twice aday which has weakend the intensity of the headaches but not so much the frequency, i also have Maxalt for my day longs which occur two or three times a week. I started taking yoga and breathing exercises just for piece of mind but it really hasnt done anything noticeable to date. I was previously on Verapamil which did not help, while switching between Verp and Top i was on Prednisone which worked wonders but apparently thats not for longer term use which i found rather dissapointing

Many report that topiramate weakens intensity and that is good.
I had some similar success with it (at 200mg/day and in combination with amitriptylene), but that was only short lived and then became ineffective.
As an abortive, you are going to hear alot about using oxygen, but you have to use it correctly to get results with clusters.
Ask a fellow that goes by "Batch" to coach you...he knows his stuff, and you will be way ahead of most of us when we were your age.

So much to learn here....take it all in 'cause these headaches can change over the years and sometimes you have to change up your approach to keep chasing them away.

Meditation, spirituality, exercise...anything that helps bring health and rest to your mind and spirit so that you have energy to battle the clusters when you must, is good...sounds like you are doing all the right things.

Take care.
Paul

Back to top

Paul
"car crazy"

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: Hey
Reply #5 - Jan 5^th, 2009 at 10:13pm

Welcome to the board! Do read the links on oxygen, it's proven a miracle abortive for many. I'm like you, prednisone provides 100% relief but long term use will really mess you up! Most use it as a transitional therapy while they wait for their prevent to kick in. You have a lot of reading to do! Pull up a seat and welcome to your second home.

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

Offline

Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Hey
Reply #6 - Jan 5^th, 2009 at 11:00pm

hi and welcome...

I'm another one who's gonna get on your case to get your Dr. to prescribe 02. Other than that..Are you experiencing any of Topomax's horrendous side-effects. While dopy-max may help it's bad side-effects have GOT to be taken into consideration also. Just a warning for you is all.

We're here to help you through the maze of info here. Been chronic for almost 22 yrs. now myself. Ask questions and sit down and read read read all the links. Wink

Linda

Back to top

Hurt people.....hurt people. Think about it.

IP Logged

MITYRARE

CH.com Old Timer

Offline

autocross racer

Posts: 361
Ontario, Canada
Gender: male

Re: Hey
Reply #7 - Jan 5^th, 2009 at 11:45pm

Linda_Howell wrote on Jan 5^th, 2009 at 11:00pm:

Are you experiencing any of Topomax's horrendous side-effects. While dopy-max may help it's bad side-effects have GOT to be taken into consideration also. Just a warning for you is all.
Wink

Linda

However, some people taking Topamax tolerate it quite well with very little side effects.

People are like snowflakes...we're all slightly different and drugs react differently for all of us

When i would ramp up at 25 mg intervals each week to my 200 mg dose i would feel less on top of my regular game but once stable at that rate for a week or so I functioned normally....yet my next door neighbour who is also a clusterhead goes loopy with a 75 mg dose and cannot find his way home or remember his kids names.

Topamax really took the edge off a couple of cycles for me when nothing else would....just sayin'

So...IMO... if Topamax is lowering the intensity without side effects, stick with it and use O2 to abort...if you are getting bad side effects from Topamax, run from it!

just sayin'

Paul

Back to top

« Last Edit: Jan 5^th, 2009 at 11:46pm by MITYRARE »

Paul
"car crazy"

IP Logged

lisab

CH.com Newbie

Offline

I Love CH.com!

Posts: 1
North of Boston, MA
Gender: female

Re: Hey
Reply #8 - Jan 5^th, 2009 at 11:57pm

I'm new here but I take a combination of 600mg of Topomax with 180 mg of Verapamil daily. I do get some side effects from the Topomax. Slight numbness occassionally in my fingers and toes, slurring words and sometimes forgetfullness. I have even had to get bifocals at age 41. Have been a chronic CH since the age of 22. But I would rather take the side effects than to have the killer pain of the cluster!

Thats just me.
Good luck to you.
Lisa

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

livin on pins

CH.com Newbie

Offline

Posts: 14
Gender: male

Re: Hey
Reply #9 - Jan 6^th, 2009 at 8:16am

Thanks alot for all the replies guys, definetly looks like I got some reading to do! The only side effects that I've noticed taking the Topamax is it seems like ever since I started taking it my brain seems to take forever to get started in the morning, like I'll brush my teeth without toothpaste or something ridiculous, put on one sock lol, but once I get going I'm fine. I don't know if I'd want to take a higher dose because I just got back into Univ. and I think it would definetly affect my memory more negatively which I can't afford, figuratively and literately.

Back to top

IP Logged

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