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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> The new kid
        
(Message started by: mikeh on Nov 11^th, 2007, 2:26pm)

Title: The new kid
Post by mikeh on Nov 11^th, 2007, 2:26pm

About a month ago I woke up from a sound sleep, at 2:00am, with a headache - a KILLER headache! I don't get headaches! I took 2 Tylenol (Extra Strength!) - THAT didn't work...A few minutes later I was on the verge of going insane. At about 5:00am it was suddenly gone. Two more eerily similar nights and I went to my doc. He listened. They did a CAT Scan (nothing). Prescribed Maxalt and told me he thought I was experiencing something called "Cluster Headache". I got on the net and started reading. Oh man, I'm thinking as I read about this curse, if I actually have this, I'm screwed! I start to get really scared. Then, five nights into it, as suddenly as they started they stop. Whew! A month later, WHAM! - back again...So, here I am - my first post - and I already feel like I've been here for years.

Just checking in.

Oh, and if anyone out there knows the cure for CH, would you please send it to me - I really don't want to do this anymore.

Title: Re: The new kid
Post by DennisM1045 on Nov 11^th, 2007, 4:28pm

Hi Mike,

I'm sorry to hear you have clusters. You're in the right place though. Lot of support from very helpful folks around here.

I'm not directly familiar with maxalt. Is it working for you? You didn't say.

Also, talk to your Dr about Oxygen. It works great for me most of the time if I get on it fast enough. I'm back in bed sleeping in 15 minutes. 15lpm with a non-rebreather mask. Check out the info here:

http://www.ouch-us.org/medications/oxygen/o2links.htm

If your Doc knew about maxalt he is probably up on CH meds or is at least willing to learn. You need to learn too. The beast can be fought and beaten. So don't get down. CH is not the end of everything. You have a new family now and we'll help you through.

You should get familiar with strategy by reading this:

http://www.plainboard.com/ch/chtherapy.pdf

It describes the latest in treatments available.

I hope you catch a break soon.

-Dennis-

Title: Re: The new kid
Post by Guiseppi on Nov 11^th, 2007, 5:47pm

Hey new kid, welcome to the nut house. Are you ready for the secret cure? So are we... :-[...no one has found it...yet! The good news is, for the most part, these things are quite manageable. You need to start keeping a detailed headache diary, when they start, how fast they build, how high the pain goes, how long it stays there, how fast it leaves. What you take that has and hasn't worked, etc. Then you need to adopt a 2 pronged approach to these things.

1: a good preventative. A preventative is a drug you take with the goal of reducing the frequency and intensity of your attacks. I'm not one of the more knowledgeable ones on different drugs and I'm not sure what Maxalt is. The more common prevents on the board are Verapamil, lithium and topomax. I use lithium at 1200 mg a day when on cycle as my prevent.

2: An abortive. You get a headache, now what. Your first abortive should be oxygen. Most can abort a CH in less then 10 minutes using oxygen. It's cheap, easy and no side effects. For emergencies I use imitrex injectables but they are expensive so not a good first choice. Many can also abort a headache using caffeine, either strong coffee or if that doesn't work try energy drinks, Monster, rock star, any containing caffeine and taurine.

Obviously we only offer what's worked for us, run everything past your doctor. If he refuses oxygen GET A NEW DOCOTOR HE IS CLUELESS. (Just our humble opinion)
;;D

Hope we can help you.

Guiseppi

Title: Re: The new kid
Post by ski2k on Nov 11^th, 2007, 7:17pm

Guiseppi gave you some good advice there, Mikeh. Listen to him! I agree with the use of O2 as an abortive. It stops the beast dead in his tracks at about 5 min., and makes it go away all together about 5 min. after that, for me.
Maxalt is most commonly used for migraines, and I don't recall anybody else here using it for CH. My doc tried me on it a long time ago, and it did nothing. But then again, I've never found anything pharmaceutical (spelling?) that has helped me as a prevent.
If your doctor won't give you O2, then definitely find a new doc!! You need a prescription for: 100% Oxygen, 15 lpm (liters per minute), through a non-rebreather mask. If you get it, then I suggest reading up on the Oxygen link on the left of this page, to make sure you're using it correctly. Using it wrong can cause it to fail.

Best of luck, and keep us posted!!
Adam

Title: Re: The new kid
Post by Linda_Howell on Nov 11^th, 2007, 7:18pm

Quote:

if I actually have this, I'm screwed!

NO YOU ARE NOT ! That kind of thinking will lead you nowhere but into a deep depression and it won't help the pain at all. A clear mind, doing YOUR homework here reading up on all their is to know about it so you can educate your Dr....will help.

There is no cure, probably won't be in any of our life-times so knock off the above mind-set, you hear? ;;D

I've been chronic for 21 years. Lots of others for a shorter time and still others, for 30 or more years of this. We're all here to support you and see you through this.

Start with oxygen as an abortive and work from there. You will need a script from a Dr. for it. Make sure you get a regulator that goes to at least 15 lpm and also a non-rebreather mask. The nose cannulas do nothing.

Read the info. in this link til you know it backwards and forwards. Print it out to take it to your Dr. For some reason that none of us can fathom...there are Dr.s who would rather give us a script for potentially dangerous drugs than for 02 which is safe, cheap and it works.

http://www.ouch-us.org/medications/oxygen/o2info.shtml

I wasn't trying to be mean (above) but sometimes we have all had to have someone give us a kick in the pants. It just happened to be your day. LOL jk

Linda Howell

Title: Re: The new kid
Post by kcopelin on Nov 12^th, 2007, 10:35am

Welcome home Mikeh! Now that you've have your first butt-kicking by Linda :o you need to know that she is the most compassionate caring helpful person. She was the first Clusterhead I ever met in person and she showed up at my house with an O2 tank, mask and a hug.
Get yourself educated about these headaches, because most docs, including neurologists, are clueless. If you can't find one who already knows about CH, then find one who is willing to listen, look at the research and work with you.

As for a cure.....you can always try a frozen banana wrapped around your head. ;;D (Or is that bandana?)

PFDAN y'all,
kathy