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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> newly diagnosed with ?'s and lots of them
        
(Message started by: cwp2002 on Sep 30^th, 2004, 7:49pm)

Title: newly diagnosed with ?'s and lots of them
Post by cwp2002 on Sep 30^th, 2004, 7:49pm

I was diagnosed by a doctor of internal medicine last friday and found this site the other day. I am having a difficult time understanding that this typically won't go away. My doc prescribed some kind of blood pressure med for me. I am a very healthy 27 yr old (with perfect blood pressure) (ex-smoker) (non drinker) with a wife and two kids. this is absolutly nuts. I am sorry that my thoughts are so jumbled up but this is upsetting. I told my wife that I would rather saw my head off than go through another month of this and Now I see that I may have this for a lifetime.... how do you live like this? is there any suggestions

Title: Re: newly diagnosed with ?'s and lots of them
Post by karma on Oct 1^st, 2004, 7:13am

Hi there,
If you cruise through the links attached to this site you will be able to learn all about CH and what to expect. Take the cluster quiz and try and schedule an appt. to see a neurologist to get a proper diganosis.
CH is unfortunately, a life time problem for most people, but not all, and the affect it has on you can range from just a little bothersome to severe. The good news is that is very treatable for most people. The key is to learn as much as possible and see a knowledgable doc.
It sounds like your doc. has some knowledge of CH but is not well informed on the whole treatment. He probably has you on Verapamil or a similar drug which is a good preventative but the dosing is important and only part of the overall treatment.
Get educated! if youv'e got CH then accept it and learn to deal with it. The more you know the less it will affect your life.

I can't believe this guy didn't get a response in almost twelve hours. Whats up with that? :-/

Title: Re: newly diagnosed with ?'s and lots of them
Post by E-Double on Oct 1^st, 2004, 8:22am

Welcome to our family dude!!

Sorry you have to be here but it is truly an amazing place.

There is tons of info that will help you do battle and an infinite amount of support.

Did your doctor prescribe meds? Preventative and Abortive

Like everything else in life we are a bit different so there are many different types of meds that people respond to. The most "popular" seems to be Verapamil used as a preventative.
For abortives medicine Triptans (imitrex, Zomig, Maxalt, amerge, and some others are used) The most popular appear to be Imitrex injections and Zomig nasal Sprays.
Get Oxygen (see the link to the left)!!! For many this is a godsend. It is cheaper than "meds" and is used as an abortive as well.

I know you have tons of questions and are feeling overwhelmed. I've been there myself, having suffered (i hate that word) with these things for nearly a decade but only getting diagnosed and finding this place in June of this year.

Hang in there man. Read and research as much as you can. Information will me one of your weapons to fight the good fight.

Best to you new brother!!!!!

Eric

P.S. You can write me anytime if ya need.

Title: Re: newly diagnosed with ?'s and lots of them
Post by JJA on Oct 1^st, 2004, 8:38am

Well it depends on what you mean by it won't go away. Were you diagnosed as chronic cluster headache? They really don't go away, at least in the short run, but most of us are episodic. They go away for months, but yes it may be a lifetime of come and go. I spend 1/4 - 1/3 of my life "in cluster", but I live an amazingly normal life. Most of the time I am a completely normal person. For one thing, I have finally found some relief. The other thing is I learned to live with it, play normal while you aren't rolling on the floor...but chronics could give you much better advice on that.

The good new is some people do have their headaches get better or even go away as they age.

You may want to look at http://www.clusterbusters.com Many report results with this.

Jesse

Title: Re: newly diagnosed with ?'s and lots of them
Post by EmpressJMB on Oct 1^st, 2004, 9:59am

Hi CWP! Glad you found us. Sorry your here. Knowing what you have is better than not knowing. (I was convinced I had a brain tumor at one point). At least with knowing you can arm yourself with the knowledge to help yourself. You live with it the best you can. The support of people here can really help get through the tough times since WE KNOW THE PAIN your experiencing. The supporter's page can also help your wife understand and cope with your pain and her feelings about your pain. Do your research and find what works best for you. No doubt there is a combination of things that will help you. Good luck in your fight against CH and remember we're here! :) Janet

Title: Re: newly diagnosed with ?'s and lots of them
Post by lionsound on Oct 1^st, 2004, 10:35am

I think the blood pressure med you're talking about is verapamil or something like it. And yes, it is a blood pressure med (a calcium channel blocker), but a lot of us take it as as a preventative for CH who don't need it as a blood pressure med.

I can tell how upset you are in your post. And I'm sorry you're feeling that way. I have a family as well and I know I've told my husband that very same thing.

I understand your worry about a lifetime of CH, but right now you need to get to a neuro and get treated properly and that may help how you feel about this. And hang around here....I KNOW that will help how you feel better about this. Ask questions, tell us how you're doing, vent,laugh, cry, ..we are here and understand.

Welcome.
Be well and PF,
lionsound

Title: Re: newly diagnosed with ?'s and lots of them
Post by BobG on Oct 1^st, 2004, 11:21am

Please don't saw your head off. It won't help. Your head will be laying on the floor looking up at your neck hole and asking "Why the heck did you do that?" And it will only leave a mess for your wife to clean up. :D

Make an appointment with a cluster headache knowledgable neurologist. There are meds to help control the attacks.

Quote:

how do you live like this?

Simple......you have a wife and 2 kids. You have no choice. You do what you have to do to get through.

Title: Re: newly diagnosed with ?'s and lots of them
Post by cwp2002 on Oct 1^st, 2004, 4:38pm

Thanks for the advice all of you. I think that this place will help some.. Is it just me or do a few of you have sort of a sick sense of humor about these headaches and all that surrounds? (BOBG)..... I am sure that I will be here posting often because so far You are the only ones that seem to believe me..... The odd thing is ( confessional) I used to never believe much when people complained of migrains. Oh well we all learn from Karma.

What is all this about Mushrooms... Seriously?

Title: Re: newly diagnosed with ?'s and lots of them
Post by Superpain on Oct 1^st, 2004, 4:45pm

I can't even imagine getting them late in life and finding out it's a lifetime of pain. I started at 15 and was never effectively treated till my last cycle., so I got real used to it and resigned myself to the fact that I had my own special pain that I would forever deal with. Or at least after the first few cycles, I knew they weren't going to go away...

You are actually lucky because with the info here and newer treatments availabe you should be able to control the headaches.
The most popular preventatives are verapimil (long term) and prednisone (short term).
And most of us can abort headaches with pure oxygen and triptan drugs such as imitrex or zomig among others.
Melatonin is also one of the most effective and cheap treatments available, and it works for ALOT of us to knock down the night time headaches.

You need to seek out a good headache neuro and try the treatments for preventing and aborting that I mentioned... It sounds like you are already on verapamil, so that's a good start. You might want to ask about doing a taper of prednisone, and definitely get O2 if nothing else!

Title: Re: newly diagnosed with ?'s and lots of them
Post by Charlie on Oct 1^st, 2004, 6:15pm

Welcome and if you look around, you'll find a lot of good ideas for dealing with this horror.

As for our believing you, that's the first thing one finds here is a family of people who know exactly what you mean. We don't talk about the pain itself all the time. We don't need to. As for a sense of humor, oh yeah. You'll find a lot of pretty imaginative lunatics here. It must be that we are comfortable enough to unwind here.

I know one of the hardest things is to get others to understand that this has nothing to do with what others think when they hear "headache." This link is to Simon's UK letter that is the best thing we have for this. It's worth copying.

http://www.clusterheadaches.org.uk/home/index.cfm?

I hope you stick around and let us know how you're getting along.

Charlie

Title: Re: newly diagnosed with ?'s and lots of them
Post by thebbz on Oct 1^st, 2004, 8:41pm

Cwp,
CH wont kill ya, lots of us here. Sorry for the late reply. Usually somebody here all the time. If you need email when you get down. Be glad and celebrate you have a wife and two kids. They also need to gather information on your condition. The kids might get a little scared if they see ya doin the dance. If they have the info they can actually help. Let them know you will be alright. It will work out it always does. The demon only wins when you let it . Now all I have to do is follow my own advice. Its tough but you can do it
BTW: what all above have said too!!!
Peace
BB [smiley=bloos.gif]

Title: Re: newly diagnosed with ?'s and lots of them
Post by tammy on Oct 1^st, 2004, 8:50pm

Hi there, I am also newly diagnosed, married, 30 years old and I have two children. I am scared because I don't think I can live with the kind of pain this cluster headache stuff has. I was also given blood pressure meds. I don't know. Anyway, I am going to try to post and introduction on here. At least I know now that I am not alone.

Title: Re: newly diagnosed with ?'s and lots of them
Post by JJA on Oct 4^th, 2004, 8:28am

on 10/01/04 at 16:38:28, cwp2002 wrote:

What is all this about Mushrooms... Seriously?

Yep.
It is a last resort type of thing usually, but seems to be the most effective. If you can find something else that works and doesn't destroy your health, start there. There is a lot of info on it here, mostly in the medication and treatments board. Look through the old posts.

Jesse

Title: Re: newly diagnosed with ?'s and lots of them
Post by karma on Oct 4^th, 2004, 8:35am

If the shroom treatment were legalized it would ,I'm sure be the treatment of choice. It has virtually no harmfull affects and the longterm affect is relief.

Title: Re: newly diagnosed with ?'s and lots of them
Post by BobG on Oct 4^th, 2004, 2:09pm

on 10/01/04 at 16:38:28, cwp2002 wrote:

Is it just me or do a few of you have sort of a sick sense of humor about these headaches and all that surrounds? (BOBG).....

Sorry about that. Maybe I should have waited until you'd been here a little longer.
I know it's sick but if you can't laugh at these things you'll only start crying.
How are you doing today?

Title: Re: newly diagnosed with ?'s and lots of them
Post by cwp2002 on Oct 4^th, 2004, 5:10pm

Doing OK. Right now. Had a Bad night last night... My grandpa got to see me in the ring with the devil... Although I really tried not to go insane. I wasn't punching myself in the temple at least.
He wanted me to try to describe it to him and I couldn't really find the words... So I hope that whoever wrote the description on the front page (anonymous) doesn't mind me printing that.
I've got a call in to the doc... Hopefully I get a call back. I am going to see if he will let me try the O2 because I don't believe that Pain meds will really do anything and I am not a fan of them anyway.
I realized last night that I have not come to the end of a cycle yet...I am going 4 days on and 1 off.. for 2 months...

I am ready for a vacation!

Title: Re: newly diagnosed with ?'s and lots of them
Post by karma on Oct 4^th, 2004, 5:29pm

hang in there
it WILL end and then life is good again