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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New to CH and New to Here
        
(Message started by: bevo on Oct 31^st, 2006, 3:44pm)

Title: New to CH and New to Here
Post by bevo on Oct 31^st, 2006, 3:44pm

Hi everyone,

I am almost postive that I just went through what you guys call CH. I call it Hell!

About a month ago I started getting a twice daily bout of headaches. Once in the afternoon and once late night that would wake me up. They are like no other pain I have ever felt. BAM! It feels like someone is trying to push my eyball out of it socket! The pain goes all though the left side of my skull from the front to the back. Only on the left side too. I thought that was strange.

I went to my doctor. He ran bloodtest, and MRI on my head. First he said it was my bloodpressure causing them. Then he said it was my diet. All the time he called it a migrane. I am so sick of hearing it called a migrane.
I dont cry when I get a migrane, I dont scream and beat my head when I get a migrane. I dont stick my thumb in my eye to counter the pressure for a migrane. I was praying for migranes!

My life ending fast. My boss was less than happy that I was leaving work at 2:00 every day. My wife was patient, but I could tell she was getting tired of it. (She agreed with the doctor. ) I was loosing it. Everyone said there was nothing that would be causing the pain. I thought I was insane.

I found some literature on the internet about cluster headaches the other day and started reading. The things they said about them are terrifying. I found this website and started looking around. I took the quiz and failded with flying colors :( I havnt seen a doctor or discussed cluster headaches with them) I am sure that is what it was.

I am going to continue to get more and more information. I want to hear it from people that are experiencing it. Like the Gentlemen on here that has had them since the 80's! They really are coming back then? How do you cope? How do your spouses cope?
How long do I actually have untill they come back? Will it be as bad, or worse? I am dying for some actual feedback from people who know. I am so glad I found this website, and I hope to get some answers.

Bevo.

P.S. Sorry it was so long, but once I started writing I couldnt stop.

Title: Re: New to CH and New to Here
Post by Guiseppi on Oct 31^st, 2006, 6:41pm

No need to apologize for the long post, we all start there.

Get thee to a doctor and get a solid diagnosis. Then get oxygen. Used at a high flow, 15 lpm, a non re breather mask, critical you breathe 100% oxygen, it will stop the headache before it gets going. It's important to remember it usually won't reverse the headache. Ffor me, once the pain starts I have to use imitrex for relief. For oxygen to work I have to start it as soon as the tingle in my neck starts. Then within 4-8 minutes the headache is gone.

You will need to get on some sort of a preventative, I use lithium, others use verapamil, there are many others, (start reading everything on the left) Then you need an abortive or two to have up your sleeve, I use cafergot and imitrex. The bad news is it takes some trial and error to find the combos that work. There is no cure for these damned things and no pill that will stop the pain. They can be managed and you can get a decent quality of life back again. Many poeple here to help you.

One last warning, doctors don't know sh$# about these things so educate yourself so you can guide them in getting your program started. Hope to see you around a bit.

Guiseppi

Title: Re: New to CH and New to Here
Post by Linda_Howell on Oct 31^st, 2006, 7:52pm

Welcome Bevo,

You've come to the right place for information. This site has just about everything you will need to know in dealing with CH and with Dr's too. Most Dr.s know so little about this rare condition of ours because they recieve exactly 5 hours of training regarding headaches of all kinds in Med. school.

I could swamp you right now with all kinds of links but I won't. I'll start with just one or two.

This is a letter you can print out and take it to your employer, colleagues, or family and it details what you're going through.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

This is for your Dr.

http://en.wikipedia.org/wiki/Cluster_headache

I have never believed that you absolutely HAVE to see a Neurologist for these. Any GP who has treated patients with CH or at least one who is willing to listen to you and work with you, is just as good as a fancy Neuro that has a waiting list of 6 months just so he can see you for 10 mins.

Good luck

Linda

Title: Re: New to CH and New to Here
Post by NovellRed on Oct 31^st, 2006, 8:53pm

Bevo,
Sorry to hear about your hell, glad you found this website. there is a lot of experience here.
One of the most difficult things about CH is different things work for different people. The clustering nature of them also make it very difficult to tell if a medication is working of if it is just a natural cycle. The one thing to remember is something WILL help.
For me it is Oxygen. I was first diagnosed with CH in 1977, discovered O2 around 1983. My life changed after that, in that I actually could have one.
I would you suggest you get some O2 anyway you can and give it a try the next time you feel the devil coming on. Look around here for different ways to get O2, be creative! It is cheap, non additive, almost no side effects.
I hope it works for you. May you have many pain free days ahead!
Novell Red

Title: Re: New to CH and New to Here
Post by BobG on Nov 1^st, 2006, 11:52am

Hi bevo,
Welcome to the board. Sorry you had a reason to coming looking for it.
My daughter and her family live in St. George, down near the high school. We come over there 4 or 6 times a year. maybe on one of the trips we can set up a meet?

Title: Re: New to CH and New to Here
Post by kissmyglass on Nov 1^st, 2006, 3:37pm

Welcome...unfortunatly.
The people around here know more about our nightmare than most docs so read read read & good luck

Kev

Title: Re: New to CH and New to Here
Post by bothofus on Nov 1^st, 2006, 8:23pm

Hello Bevo, you can live with these even though they may be the biggest battles you will ever fight in your life.
There are plenty of more learned folks on here than me about the actual workings of the blood vessels and nerves and such, and they really know there stuff.
I've been diagnosed episodic since about 1982 I believe. Sometimes a year, sometimes 3 years between cycles. Oh those pain free times are glorious.
The meds have changed since my first few bouts and are definitely better now than then. Weren't many options then for preventing them or aborting them.
Hang in there and read, read, read the info.
Knowledge will help you fight them almost as good as the meds.
Carl

Title: Re: New to CH and New to Here
Post by Richr8 on Nov 1^st, 2006, 8:53pm

on 10/31/06 at 15:44:40, bevo wrote:

but once I started writing I couldnt stop.

Yes Bevo. When you first find this place. Everyone here knows that feeling.

on 10/31/06 at 15:44:40, bevo wrote:

I am going to continue to get more and more information. I want to hear it from people that are experiencing it. Like the Gentlemen on here that has had them since the 80's! They really are coming back then? How do you cope? How do your spouses cope?
How long do I actually have untill they come back? Will it be as bad, or worse? I am dying for some actual feedback from people who know.

Sorry to say, if you have CH, they'll be back. There are as many stories as there are people with one common thread, recurring bouts that have to be treated, and controlled. There are many tips here form folks who have done it all with varying levels of success. In regards to coping, you will. We all do with the help of each other.
The answers to all of your questions are here and everyone is more that willing to share there stories and provide support. Read all that you can, ask questions, reach out for support when you need it, and provide it when you can.

Title: Re: New to CH and New to Here
Post by BB on Nov 2^nd, 2006, 5:23am

Welcome to the Board,

Sorry to hear you are having these bad headaches, the best you can do now to help yourself is to spend some time reading as much of the information here as you can, then discuss them with your doctors.

If and when you have any question, dont hesitate to ask, someone who has had experience with it will come forwards to answer.

And most importantly, post away if you need a shoulder to cry on or just an ear to listen, vent away as it will help ease the stress. CH can be very stressful, especially to newbies.

Take care and painfree wishes to you.

Annette

Title: Re: New to CH and New to Here
Post by Bob_Johnson on Nov 2^nd, 2006, 7:38am

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

------------------------
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: New to CH and New to Here
Post by Barak on Nov 2^nd, 2006, 8:23am

hey im kinda a kid ehre and i leave the advice to the adults. but i was disgnosed when i was around seven and had been having them for a quite some time even then. people you work for and people who see yo ua lot still just dont understand but theres a really good letter two topics down on the getting to know you page that you can give to your friends family co workers bosses etc.. you hsould read it yourself its really good. but we are all here for you so keep your questions coming and they will all be answered but importantly read read read this is a treasure trove of info. well i gotta go to shcool so good luck and iwish you many pf days (pain free days)

Barak

Title: Re: New to CH and New to Here
Post by Sandy_C on Nov 2^nd, 2006, 7:59pm

Hi Bevo, and welcome. Sorry you had to find us, but if you have CH, this is the best place you could ever be.

I agree with Bob Johnson, and his link to the Brightok pages. Print this out. Take it to your doc. When I first was floundering around trying to find out if I had CH, or something else, I printed this information that I had found on this site. I took it to my doc, who didn't know much/anything about CH. He and I learned together.

Please keep one very important thing in mind. You mentioned that what you learned about CH was "terrifying". Yes, I can't argue that because I felt the same when I learned about it. But, CH will not kill you. It is not a death sentence. We learn how to manage our CH with medications/without medications, but mostly with sheer gut.

Someone is always here. Ask questions, above all, read/learn. You are your own best advocate with your doctors. Cry, vent, and share. That's why we are here.

Sandy