Hello all,

Been lurking around this site since about mid august.

I was recently diagnosed with cluster headaches earlier this month. Headaches started in August. One or two a day atleast every other day and always behind my left eye. Starting the frustrating process of working with my neurologist to find a combination of meds that help. Currently working up to 100mg of topamax, at 75mg at the moment. I'm using relpax as an abortive with mixed results.

I look forward to working through this with you all. I used to think I was a tough guy.   

Welcome!

Check out the "O2" link on the left hand side of the page.....you'll find it interesting reading.

Hi SB

It looks like you were lucky enough to get diagnosed pretty quickly compared to so many people here and you've got a neurologist who has got you on one of the popularly used preventives.

For your abortive, Replax, I've not seen this mentioned here by anyone as a abortive for CHs. Looking at the info online, this is a brand name for Eletriptan, which is one of the triptans which are commonly used for migraines and CHs. However it looks like it's given in tablet form, so for it to start to act it needs to be digested, which is going to take perhaps 20 minutes before it can take effect.

A much quicker acting drug is Imitrex which can be injected and it takes effect a lot quicker, although it's pretty expensive.

What a lot of people use to abort CHs is oxygen, which when used with a high flow rate via a non-rebreather mask can often get rid of a CH in under 10 minutes. Read all about it using the oxygen link on the left.

Energy drinks can also help. Just drink a Red Bull or similar drink at the first sign of a CH and it can help reduce the duration and intensity of the attack. Just look for something with both caffeine and taurine which together act as a vasodilator and calcium channel antagonist (just like Verapamil).

You'll find a lot more info on this forum, so I'd start reading lots of posts, especially in this section where people introduce themselves and people comment on things that can help.

And keep asking questions. People here either get CHs or support people with them so we all understand what it's like.

Most of us will have thought we were pretty tough until CHs came along.

Yea I feel pretty lucky as far as my neuro goes. One of my biggest fears was having one that knew nothing about them, having read what others have suffered through trying to find a good doctor. If anyone in the central Virginia area needs one I'd be happy to recommend him. He said he treats about 15 other CH sufferers.

We discussed oxygen and unfortunately we both agreed it's not practical for me as I'm 25 and live in an apartment. Mike you hit the nail on the head with my current abortive med. It takes too long to kick in and by that time it's either full blown and of no use or already over with. Just today I had one at work kick off and move right on through it like nothing.

I plan on calling doc on monday to see about the injections as I've read a few good things about them. I guess my only question is as far as costs goes. This relpax stuff costs me about $6.25 a pill, how much more expensive are the Imitrex injections you reckon?

I have found that with energy drinks sometimes I can stop them and when I cant, it sometimes takes the edge off of them. I keep a 4 pack of monster or redbull in the fridge at home and a 5hr energy drink at my desk for work. One thing I look for with them is only drinks with 1000mg of taurine in them (I think thats what I read.)

Sorry for the long winded post and for asking questions that may have already been answered. Even before I joined here this place helped keep me going.

SpasticBobble wrote on Oct 15^th, 2010 at 3:18pm:

Yea I feel pretty lucky as far as my neuro goes. One of my biggest fears was having one that knew nothing about them, having read what others have suffered through trying to find a good doctor. If anyone in the central Virginia area needs one I'd be happy to recommend him. He said he treats about 15 other CH sufferers. We discussed oxygen and unfortunately we both agreed it's not practical for me as I'm 25 and live in an apartment. Mike you hit the nail on the head with my current abortive med. It takes too long to kick in and by that time it's either full blown and of no use or already over with. Just today I had one at work kick off and move right on through it like nothing. I plan on calling doc on monday to see about the injections as I've read a few good things about them. I guess my only question is as far as costs goes. This relpax stuff costs me about $6.25 a pill, how much more expensive are the Imitrex injections you reckon? I have found that with energy drinks sometimes I can stop them and when I cant, it sometimes takes the edge off of them. I keep a 4 pack of monster or redbull in the fridge at home and a 5hr energy drink at my desk for work. One thing I look for with them is only drinks with 1000mg of taurine in them (I think thats what I read.) Sorry for the long winded post and for asking questions that may have already been answered. Even before I joined here this place helped keep me going.

That's almost the lamest excuse yet.

                   Potter          

     You know what it pobably is a tad lame for using the apartment as excuse. I guess I'm putting it wrongfully under personal reasons for not wanting to use it. I actually thank you for calling me out on that.

Welcome,

Coach bill

Marc wrote on Oct 15^th, 2010 at 5:14pm:

Depends upon how bad your Cluster Headaches hurt I suppose. Oxygen gave me control of CH's which in turn gave me my life back. Breathing pure O2 at very high flow rates kills my hits in 3-6 minutes and I'm right back at whatever I was doing. No more missing fun/work/sleep. Best of luck to you.

   God has spoken.  Listen.

               Potter

   I just tend to yell real loud.  OXYGEN.   It saved my skinny old butt.

     Potter                            

SpasticBobble wrote on Oct 15^th, 2010 at 4:59pm:

You know what it pobably is a tad lame for using the apartment as excuse. I guess I'm putting it wrongfully under personal reasons for not wanting to use it. I actually thank you for calling me out on that. We discussed oxygen and unfortunately we both agreed it's not practical for me as I'm 25 and live in an apartment.

Hiya Spas,

Welcome aboard.....

Your last quote above intrigued me...and I'm trying to read between the lines. Could be ENTIRELY wrong...and would have no problem hearing it. But, here goes:

"I'm 25"

Myself, I was about 29 when I "discovered" O2 (thanks to National Headache Foundation). What I'm thinking, and what I experienced was that "other" folks perceive using O2 as: he's weak, he's sick, he's old, he's dying, he's........It bothered me, but only for a short bit, as the relief was immense, nearly immediate, and side effect free!...and spending life worrying about what others think is a "wasted spent". Eventually, it became an accepted part of who Jon is...and no one cares anymore.... and I couldn't care anyway. 25 or 55 (me now)...you do what ya gotta do. I'm really hoping you and/or your doc doesn't have this pointless prejudice.

"I live in an apt"

Well, so do I (2nd floor). All that means is that I can't wrestle a welding tank up the stairs. What I do have is a little two wheeled cart, that holds a glorious e-tank, and 7 more tanks parked in the entry way. I take that wheeled puppy everywhere...it fits in the car easier than a bag of golf clubs...and follows me anywhere I want.

Oxygen has changed my life, saved my sanity, and actually made life possible...read what's available here (and almost only here) and reconsider...you'll be GLAD you did!

Best,

Jon

Marc wrote on Oct 15^th, 2010 at 7:10pm:

OK, I know I tend to get on my high horse about this, but O2 really did change my life. So, yeah I tend to come on kinda strong sometimes but it's only 'cause I remember the times curled up on the floor wanting to die. The thought of someone going through that needlessly just bugs the shit out of me.

Hey Marc....everytime I see you comment on this subject...I smile and nod...because I KNOW you just saved maybe ONE more clusterhead from the nightmare.

Aint no high horse brother...I prefer to think of one of my favorite artists, Tom Waits, and a song called "Get Behind The Mule (and plow)". You've plowed many a fertile farrow brother...the Clusterville Farm NEEDS your fecundicity...rave on!

Best,

Jon

Potter wrote on Oct 15^th, 2010 at 7:51pm:

I just tend to yell real loud.  OXYGEN.   It saved my skinny old butt.      Potter

Potter...you crack me up. Some day we'll have to compare "skinny old butts", cuz I got one too. We'll let Barb do the grope/grade...she's had lots of practice  ::).

O2...oh my...oh YES!

Best,

Jon

Hey SB,

Just here to say Welcome and add my voice to the chorus "oxygen (and this place) changed my life"  :)

Do hope you find a way to reconcile yourself with the idea of using oxygen.  It's good, it works and so on and on  ;)

Good luck,

Kate

Thank you all for the welcomes. Between everyones direct approach (just as greatly appriciated trust me) and Jon reading between the lines correct I'm going to read up on it.

Go figure yesterday I talk about not wanting to use oxygen and I actually wish I had had it by the end of the night. Had 4 hits yesterday including one that woke me up lastnight. I'll be calling my doc monday to see what I can do.

Thanks guys and gals.

SpasticBobble wrote on Oct 16^th, 2010 at 11:33am:

Thank you all for the welcomes. Between everyones direct approach (just as greatly appriciated trust me) and Jon reading between the lines correct I'm going to read up on it. Go figure yesterday I talk about not wanting to use oxygen and I actually wish I had had it by the end of the night. Had 4 hits yesterday including one that woke me up lastnight. I'll be calling my doc monday to see what I can do. Thanks guys and gals.

        Why would you not consider oxygen which is the best tool in the arsenal?

         Potter

Spas,

     You intimated that it was YOU that didn't want the 02.  May I ask what it is that made/makes you feel that way?    If your Dr. wouldn't prescribe it that's one thing and of course there are ways around that which lots of us will be happy to help you with.

Luinda

SpasticBobble wrote on Oct 16^th, 2010 at 11:33am:

oxygen ... I actually wish I had had it by the end of the night.

This is a reason overriding whatever is thought otherwise, and a day after day experience with CH.

Even when mine first arrived, they brought in some condenser, an 8Lpm regulator, and didn't have a non-rebreather mask, all wrong for CH.  I corrected what I could with the oxygen provider, but also read the oxgyen page that was provided at that time on this site.  A couple people here had attached their name at the bottom of the page for any questions or assistance.

I pm'd, we talked, and the correct set-up came into place in short time.  With the new oxygen page and expanded ideas and innovations in the oxygen threads here since then, the help for solutions is still just a matter of reading and asking.  Hesitating will not make that wish come true, CH will make your quote above happen until you change it.



Mike NZ wrote on Oct 15^th, 2010 at 3:00pm:

It looks like you were lucky enough to get diagnosed pretty quickly compared to so many people here and you've got a neurologist who has got you on one of the popularly used preventives. What a lot of people use to abort CHs is oxygen, which when used with a high flow rate via a non-rebreather mask can often get rid of a CH in under 10 minutes. Read all about it using the oxygen link on the left. Energy drinks can also help. You'll find a lot more info on this forum, so I'd start reading lots of posts, especially in this section where people introduce themselves and people comment on things that can help. And keep asking questions. People here either get CHs or support people with them so we all understand what it's like. Most of us will have thought we were pretty tough until CHs came along.

I agree with Mike and everyone who's responded here, they are right on. 

Also, working with a preventative can be an ongoing experience for effectiveness.



SpasticBobble wrote on Oct 15^th, 2010 at 11:30am:

I look forward to working through this with you all. I used to think I was a tough guy.

 

Keep at it and welcome.     :)

Looks like you're getting plenty of good advice here regarding the O2 and stuff that'll really help you turn this thing around.

Personally, I'm getting the unfortunate impression that your neurologist could be more on top of it.

Sorry, but IMO any doc who prescribes a triptan PILL instead of injections for CH, and votes against O2 is actually doing harm when he could've been doing good.

Maybe he'll be willing to learn though....?

SpasticBobble wrote on Oct 15^th, 2010 at 3:18pm:

... my neuro ... said he treats about 15 other CH sufferers. ... my current abortive med. It takes too long to kick in and by that time it's either full blown and of no use or already over with.

SpasticBobble wrote on Oct 16^th, 2010 at 11:33am:

Had 4 hits yesterday including one that woke me up lastnight. I'll be calling my doc monday to see what I can do.

Feedback on his treatment plans at this time should be given freely and often to him, it doesn't seem to be working.  Tell him exactly what you said above.
 
If he treats others, then the rubber needs meet the road.  Log your hits for the next meeting, your treatment needs to progress.  Especially abortive-wise while working in a new preventive med that may be an experiment that hasn't proven itself with you yet.

Hey Spastic, welcome to the board! 2 things:

1: You'll notice we're a pretty damned opinionated board and at times it appear we come on kinda strong. ;) Our hatred for the beast knows no bounds, any success the beast has against a fellow CH'er is a direct assault on us.

2: I'm a 32 year CH'er, NOTHING compares to the speed and effectiveness of CH, and its lack of side effects.

Don't take offense to anything anyone says here, unless of course they insult your mom! ;) We all want you to stop hurting because all of us have hurt like you and it really pisses us off.

Wishing you some pain free time soon.

Joe

Guiseppi wrote on Oct 17^th, 2010 at 9:20am:

Hey Spastic, welcome to the board! 2 things: 1: You'll notice we're a pretty damned opinionated board and at times it appear we come on kinda strong. ;) Our hatred for the beast knows no bounds, any success the beast has against a fellow CH'er is a direct assault on us. 2: I'm a 32 year CH'er, NOTHING compares to the speed and effectiveness of CH  Oxygen, and its lack of side effects. Don't take offense to anything anyone says here, unless of course they insult your mom! ;) We all want you to stop hurting because all of us have hurt like you and it really pisses us off. Wishing you some pain free time soon. Joe

Fixed it for ya Joe.

           Potter

Bless you Potter...the perils of posting before the coffee has fully taken effect!

Joe

Three minutes.   Does a siren go off when I post?

   Potter

  OMG Potter..I'm rolling here.  [smiley=crackup.gif]

Potter wrote on Oct 17^th, 2010 at 11:32am:

Three minutes.   Does a siren go off when I post?    Potter

Almost makes it seem like we're watching you..... [smiley=gossip.gif] ;D

Guiseppi wrote on Oct 17^th, 2010 at 2:29pm:

Potter wrote on Oct 17th, 2010 at 11:32am: Three minutes.   Does a siren go off when I post?    Potter Almost makes it seem like we're watching you..... [smiley=gossip.gif] ;D

   I would certainly hope so.

          Potter

Hey Spastic, LISTEN to Marc, my husband is one of the people he saved- he has this DOWN. These folks know what they are talking about.

And if you're a young strapping 25 year old you shouldn't have any trouble muscling a 70lb welding tank upstairs to your apartment, hmmm?

We're young too, alright, not AS young, but this is the WAY to go to manage CH. And if anyone asks, tell them pure O2 is the best hangover cure ever (which it is) and that's why you have it. It'll make you look all hardcore and stuff!

And Potter, so glad your on the board. This one and the "brain worms" post from Sandy's thread are the reason my C key is sticking on my keyboard now- coffee spewed on a keyboard will do that to you it turns out!

ALSO, the Imitrex nasal spray works for my husband if you don't want to jump straight to the Imitrex injections. At least worth a try and gotta work better than pills. Though be aware he is not in the majority on that.

And Melatonin- if you are getting night time hits I recommend it. Lots of good info on the board.

Lauren17 wrote on Oct 19^th, 2010 at 10:39am:

.. if anyone asks, tell them pure O2 is the best hangover cure ever (which it is) and that's why you have it. It'll make you look all hardcore and stuff!....

LOL - good strategy! Heck you oughta take it to the next level and get several large prominent tatoos of O2 cylinders!