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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hmmm...Im not crazy
        
(Message started by: Jackson on Sep 3^rd, 2007, 1:25am)

Title: Hmmm...Im not crazy
Post by Jackson on Sep 3^rd, 2007, 1:25am

I have nothing to say right now. I am in complete shock.

I am not crazy... This is actually a condition. I just cannot believe this. I am so happy I want to cry.

My name Is Tracey. I am 27 years old. I have been an episodic CH sufferer for 10 years now (currently in cycle). I have never known anyone else to have this type of pain, and I am sure glad that I have found someone. After dealing with this pain for 10 years, with no relief when it happens, to now know that there is some hope for this, I want to get up and do backflips or cartwheels or something.

I am such awe that I am just staring at the screen with a million things going through my head...

Im going to ponder this for a bit..... then I will be back.

By the way....

THANK YOU !

Title: Re: Hmmm...Im not crazy
Post by George_J on Sep 3^rd, 2007, 2:05am

It's a little overwhelming, isn't it?

That was my first reaction when I found CH.com as well. Imagine that--there are others.

Welcome to your new home. Look forward to hearing more from you.

Best wishes,

George

Title: Re: Hmmm...Im not crazy
Post by MR_FLOOR on Sep 3^rd, 2007, 2:14am

Hey Jackson,

Definitely you are not crazy,theres quite a few of us,and we support each other like family.Welcome home.

Dave

Title: Re: Hmmm...Im not crazy
Post by michael on Sep 3^rd, 2007, 4:31am

Hi Tracey

Welcome to your new family, you'll never be alone with the beast again.

Great name by the way - same as my daughter.

PF wishes

Mike

Title: Re: Hmmm...Im not crazy
Post by JenniferD on Sep 3^rd, 2007, 7:25am

Hi Tracey, your reaction is exactly like mine was. I didn't know whether to laugh or cry, so I did both!

Nope, you're not crazy and you're welcome here. We all do understand the pain, and you'll find a lot of info on how to deal with it.

Stick around and get to know us. :)

Jen

Title: Re: Hmmm...Im not crazy
Post by barry_sword on Sep 3^rd, 2007, 7:52am

Welcome to your new family. That was my reaction also when I found this board and all the help from the family.

Barry

Title: Re: Hmmm...Im not crazy
Post by DennisM1045 on Sep 3^rd, 2007, 8:22am

Hi Tracey, Welcome home! You wont find a better support system or a more informed group of people on the planet. This place is amazing ;;D

So read, read, read and when your done, read some more. Get your game plan together and then find a Doctor who will work with you. It is hard to find a Dr who is already up on CH so finding one who is willing to learn is also a good way to go.

When you get your head together (did I just say that :-X) let us know more about your experience. Then get ready for some great advice.

-Dennis-

Title: Re: Hmmm...Im not crazy
Post by Callico on Sep 3^rd, 2007, 4:45pm

Hi Tracey!

I am not a psychologist, so I cannot diagnose whether or not you are crazy, although a lot of us here are! ;;D

Welcome home.

Jerry

Title: Re: Hmmm...Im not crazy
Post by Guiseppi on Sep 3^rd, 2007, 5:17pm

Okay, now you have some work to do! Tell us what you've used, what has and hasn't worked, and give us a chance to make some suggestions, it's what the board is really for!!!! And welcome to the greatest little web site on earth!

Guiseppi

Title: Re: Hmmm...Im not crazy
Post by Jackson on Sep 3^rd, 2007, 10:08pm

:D
Ok, my thinking is a little more straight. I have read some, but there is alot more to go.

As, I said before I have had CH for 10 years now. When they first started I was told so many different things by so many doctors. It was because I was anemic, because I had depression. Every doctor had a different answer. I tried so many different medications that are too long to list. So I gave up about 5 years ago. I haven't been on anything since.

The beast comes every 4-6 months, for about 8 weeks. I have them almost everyday, could be every other, sometimes four days in between. When they first start in a cluster I wake up at night with them. Then they start in the morning, and travel into the afternoon. My last one was yesterday morning lasting an hour and a half. Yesterday the pain lasted all day, like an annoying pain, tolerable. Its still there today, but much less than yesterday. When they come I squeeze my head so tight, and just cry. I keep telling myself it will be over soon. I need to say that over and over to myself so I make it through. It usually only lasts about an hour. Then I am extremely exhausted. I get the pain in my right temple. My right eye gets watery and droopy and my nose gets stuffy on that side. Sometimes its so bad that I just want to die.

So after reading a bit on the site, I see a light at the end of the tunnel. There is help out there. Is there really an injection that can make an attack last only 10 minutes or so?

I noticed on the OUCH website that there is a neurologist in my area. He is in with the Headache Center that is here. I am definetly going to call tomorrow.

Everyone here has been so kind. I am so grateful to each and everyone of you! I cannot explain how thankful I am that you would share your feelings, trials and tribulations.

Tracey
:D

Title: Re: Hmmm...Im not crazy
Post by michael on Sep 4^th, 2007, 6:41am

Hi Tracey,

A few ideas to think about and talk over with your neuro.

Yes you can get an injection. It is called imitrex and comes with an injector pen so you just hold against the skin and press. Usually works in 10 mins (The maximum dose is 2 a day). Can also get imitrex pills and nasal spray but they dont seem so effective.

Alot of people here swear by oxygen. Must be 100%oxygen breathed through a non-rebreather mask at a flow rate of 10 to 15 lpm at the first sign of an attack. Most seem to get relief within 20 mins.

Thats the aborts but you also need a preventative.

Alot use verapimil although in much higher dosages than the drug is usually used for (can be between 240mg and 1000mg a day) so alot of trial and error is needed to find the level plus constant monitoring of the heart as high levels can be dangerous.

A prednisone taper (steriod) is used initially whilst the verap is building in your system. This is taken tapering down in dosage over a couple of weeks and should take out some hits.

Alot of people have found success with energy drinks like Red Bull (any that include both caffeine and taurine).
Must be gulped straight down at the first sign of a hit.

Hope this gives you some hope. I am sure many will follow with their suggestions. What works for one does not neccessarily work for someone else. Alot of trial is needed.

Note, apart it seems oxygen, many of the drugs we use need to be used as sparing as possible, they are not nice drugs.

PF wishes

Mike

Title: Re: Hmmm...Im not crazy
Post by Batch on Sep 4^th, 2007, 11:04pm

Hey Tracy,

Sorry you ended up here, but you've come to the right place. I just wanted you to know the folks you'll meet here are all crazy... Not stupid... just crazy. They're crazy with delight that you found us... Crazy to answer your questions. Crazy to be your supporter and listen to your problems. and best of all, crazy to be your best friend.

I'm Pete Batcheller a.k.a. Batch and also your friendly O2 Pusher I'm Pete Batcheller a.k.a. Batch and also your friendly O2 Pusher. If you've not already done so, make an appointment with your doc and ask for an Rx for medical O2. Make sure you ask for 7-15 liters/minute flow rate, and if that's not a problem with the doc, ask for a 15-25 liter/minute Rx.

You'll find a Supplemental User's Guide on the OUCH website in yellow on the left or go to the following URL:

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

and drill down in the "O2 Information" link in green. It has more current information on using O2 as a cluster headache abortive than anywhere on the Internet...

There's also a questions and feedback link that you can use to contact me. If you do, I'll send you the latest version of the High Flow Rate O2 Therapy paper and procedures to abort cluster headaches. Long time chronic cluster headache suffrerers who've used O2 for years are using this new procedure and cutting their abort times in half. Please drop me a line so we can help. I've already sent you a PM so you can contact me directly.