Click this link to read a post I like on the clusterheadaches.com message board...

Txjalapeno

CH.com Newbie

Offline

Posts: 10
Houston, TX|USA||0|0|TX,Texas
Gender: male

Been Lurking
Nov 24^th, 2009 at 5:25pm

Hi, I'm Brant. Been lurking here for a few years, signed on last year, but have never posted. Not good at this sort of thing, but here goes....I've had clusters for as long as I can remember and the older I get the longer the cluster last. They always start before Thanksgiving and my last one lasted about 3 months...The year before last I ask my Dr. About Verapamil and started on that and it broke the cycle and I skipped last year (Yeah me!) but I started again this year and upped my verapamil dose and I'm only getting one a day instead of my normal 2am, 6am, 5pm (why are they like clockwork??) I just wanted to say thank you to everyone one here. I'm glad there are people that I can relate to on this sort of thing. When I hear someone say "I've had a migraine all day" I just want to punch them in the face!!! Until you're beating your head against the wall just to change the pain, or you're curled up in bed squeezing you're head with all your might....until you have welcomed the reaper because you have been in so much pain for so long....You have no idea what a migraine is!!! Okay...I got that out of my system, sorry. I'm glad y'all understand and I'm not alone. Again thank all of you and who ever came up with the Imitrex Tip...OMG, what a life saver that has been!!!

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

angela.lambert

CH.com Veteran

Offline

Support Alaska Commercial
Fisherman

Posts: 182
petersburg,alaska
Gender: female

Re: Been Lurking
Reply #1 - Nov 24^th, 2009 at 6:19pm

Hello Brant!

Welcome fellow Clusterhead!

It helps to vent and your venting in the right place to the right people.

I second the Imitrex tip - it's a life saver and $ saver.

Have you tried O2 or Melatonin? What daily regiment are you on?

My guess on the CH's timing is, that it happens because of your internal body clock. Something that normally triggers your wake up, sleepy time etc... also triggers your CH's. Why, I dunno??? Huh

There will follow more intelligent answers than mine, I'm sure of it. Wink

Angela

Back to top

The Beast, the Beast, the Beast is on Fire!

IP Logged

Txjalapeno

CH.com Newbie

Offline

Posts: 10
Houston, TX|USA||0|0|TX,Texas
Gender: male

Re: Been Lurking
Reply #2 - Nov 24^th, 2009 at 7:11pm

Hey, Angela -
My only routine is the verapamil everynite, regardless of wheather or not I'm having a cluster....and 15 mg of melatonin everynite...again, regardless. After skipping last years round I had hoped I found my preventative. My Dr. told me when I started the Verapamil year before last, that if it does not work, to up the dose and wait a few days to see if it stops it. So, that is what I did. I'm going to give it a couple more days and up it again if they persist. I thank God that I don't get them like some people here do. Once my cluster breaks I'm safe for another year...I can drink, eat cured meat, cheese...all of the no-no's, until the next year. If I'm having a cluster and do any of those things, especially drinking it will trigger one out of my normal schedule. I can't do the "water, water, water" cause I'm 43 and will be up all nite in the bathroom (I know, TMI), and I have not tried the oxygen. Here is something crazy that worked for me before I finally got imitrex. I know this is going to sound off the wall but I would take a back massager and find this place on the bridge of my nose that made me sneeze by vibrating it, and I would sit and just make myself sneeze, over and over and over....it releived some of the pain and made it bearable. Part of the reason I was mis-diagnosed for so long casue my Dr. took that info the wrong way and said it was sinus headache....he jsut didn't get it. All the sinus medicine in the world, Vicoden...nothing would touch my headaches!
I thank God for Imitrex!

Back to top

IP Logged

angela.lambert CH.com Veteran Offline Support Alaska Commercial Fisherman Posts: 182 petersburg,alaska Gender:	Re: Been Lurking Reply #3 - Nov 24^th, 2009 at 7:18pm How much V are you doing? I'm on 80mg tabs 4 times a day. 7am, noon, 5pm, & 10pm total 320mg. It has helped mute the intensity and duration of the headaches and lessons the amount of attacks by 50% or more. Angela
Back to top	The Beast, the Beast, the Beast is on Fire! IP Logged

Txjalapeno

CH.com Newbie

Offline

Posts: 10
Houston, TX|USA||0|0|TX,Texas
Gender: male

Re: Been Lurking
Reply #4 - Nov 24^th, 2009 at 7:36pm

I knew you were going to ask that...I don't have the bottle with me. They're blue and I'm up to three everynite....like that tells you alot. LOL.

Holy crap!!! you must be one of the ones that gets them all the time. I'm so sorry...

I really am blessed. I have read about alot of these folks that get them year round all the friggin' time....

Oh...I forgot. The Dr. Also checked my testosterone because mine was really low so I take a shot every month for that...don't know if that has done anygood or not because I started that the same time I started the V (sounds like I'm on "True Blood", don't know if you watch that or not).

So you get them year round?

Back to top

IP Logged

Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Been Lurking Reply #5 - Nov 24^th, 2009 at 7:52pm Do yourself a favor. Read up on o2. As an abortive it works wonders for many of us. All the best
Back to top	Walk in Peace "If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama IP Logged

angela.lambert

CH.com Veteran

Offline

Support Alaska Commercial
Fisherman

Posts: 182
petersburg,alaska
Gender: female

Re: Been Lurking
Reply #6 - Nov 24^th, 2009 at 8:01pm

No, I guess I fit in the lucky group of episodic CH sufferer and not chronic.

I only take V during my CH cycle.
The blue ones? Mine are white. Yours must be time released? Not sure I've heard of taking V once a day. I don't know, but taking them spread out during a day sounds more effective and better on the body to me.

In regards to the testosterone: I'm not too sure about it, but someone here is bound to read that and have something to say.

BTW, I'm a huge True Blood fan Wink

I got a Merlotte's Beer Glass for my birthday!! Roll Eyes

And another; the new "V" on ABC. It's on tonight!

Angela

Back to top

The Beast, the Beast, the Beast is on Fire!

IP Logged

Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: Been Lurking Reply #7 - Nov 24^th, 2009 at 9:45pm He Brant sorry you had to find us this way. Your venting is totally on. Been their many times. Sometimes the frustration is worse. I got o2 for the pain. Now you ch.com for the frustration. Stick around read up. Toss us a note now and again. We all trulky understand. Wish you PFDAN jrcox
Back to top	IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: Been Lurking
Reply #8 - Nov 25^th, 2009 at 12:08am

Txjalapeno wrote on Nov 24^th, 2009 at 5:25pm:

the Imitrex Tip...OMG, what a life saver that has been!!!

Lifesaver is right! I can tell you I sure have found that to be true, and it has revolutionized my CH experience!

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

Click Here to visit the CH.com Facebook page!

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Been Lurking
Reply #9 - Nov 25^th, 2009 at 2:06am

Welcome to the board, a couple of things......go to the medications section....a posting by Donna H titled "why don''t we pay attention to this" A very interesting theory about testosterone levels and their effects on CH.....certainly worth a read.

And it'll sound like a broken record but do read the oxygen info tab on the left and talk to the doc about it. 31 years of CH here and nothing has given me the consistent success of oxygen. I can abort in 6-8 minutes....beats the hell outta the old 90 minute rides!!!

And last....do be careful with the verapamil. We take it at much higher doses then the blood pressure patients do. Don't ratchet up too rapidly without working closely with your doc as it's a fairly high horsepower med.

Joe

(who is 49...and that waking up all nite to pee....yeah...that sucks! Grin

)

Back to top

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

IP Logged

lorac CH.com Old Timer Offline Imagine Posts: 433 Tennessee Gender:	Re: Been Lurking Reply #10 - Nov 25^th, 2009 at 8:37am ya...another note on Verapamil don't take it and also do the energy drinks with Taurine,,,It may upset your heart rythms...it did mine. I take one (blue one) every nite also. works ok for me. welcome lorac
Back to top	IP Logged

angela.lambert CH.com Veteran Offline Support Alaska Commercial Fisherman Posts: 182 petersburg,alaska Gender:	Re: Been Lurking Reply #11 - Nov 25^th, 2009 at 1:07pm Is the blue V a time released? Just curious?
Back to top	The Beast, the Beast, the Beast is on Fire! IP Logged

Txjalapeno

CH.com Newbie

Offline

Posts: 10
Houston, TX|USA||0|0|TX,Texas
Gender: male

Re: Been Lurking
Reply #12 - Nov 25^th, 2009 at 2:15pm

My bottle says Verapamil SA 120mg. I dunno if that is time release or not. I googled it and found SR and SA so I'll check with the pharmacy and see what they say and depending on that I just might give your advice a shot
...instead of taking three tonite, I'll take one and space the other two out accordingly and see if that helps.

A Merlotte's Beer Glass... Some one cares enought to give you a very cool gift! That's awesome!

Forgot all about V coming on...I was going to catch that, dad-gummit!

Got a call into my Dr. about the O2 as well...probably be Monday before I hear back though.

Back to top

IP Logged

angela.lambert

CH.com Veteran

Offline

Support Alaska Commercial
Fisherman

Posts: 182
petersburg,alaska
Gender: female

Re: Been Lurking
Reply #13 - Nov 25^th, 2009 at 2:52pm

I try to space out the V as much as possible, so I don't get to low at some point. The Melatonin gets me through the break in the night, and i pop that V as soon as I get my eyes open. (I think that I'm on the right track...?)
So far this cycle, things have been going pretty well. Getting a couple every other day, and am able to nip them with O2 so far, used the shot 2x. It will be 3 weeks this Friday since I started.

Get on that O2!! You will be so excited when your able to nip that first headache with your own breath!! It's almost like a true miracle happening to you.

If you have high speed Internet, you can catch up on V on ABC.com. They got full episodes ready to watch. I missed the pilot, so I watched on the computer.

Got great friends here in Ptown AK. Wink

Angela

Back to top

The Beast, the Beast, the Beast is on Fire!

IP Logged

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