Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> hello-never thought it would be me
        
(Message started by: robin1 on Aug 23^rd, 2004, 5:57am)

Title: hello-never thought it would be me
Post by robin1 on Aug 23^rd, 2004, 5:57am

hello everyone , iam new to this , new to even using these poster things,never thought i would be the person to be suffering like this, i have unfortunately diagnosed myself , i intially went to my gp and he told me i had tension headache ,then i went back to him with an article describing cluster headache and he agreed this was the exact decription of my headaches. god help me!!he said antibiotics and paracetamol would cure it, it sure hasnt iam crying with pain everyday, i cant work and ive pushed my wife and family away, even my parents think iam full of shit, i dont know what to do ,what to take , iam scared to take any new meds because of the side effects and i live alone, and no transport to go to hospital if i get sick. can someone gimme advise as to what to start off with. i heard that smoking ciggarrettes is the cause and so ive stopped ,not sure of the effect , ive had pain more or less every two days sometimes however mine my mildly linger about all day,then go away, , what happens next will they go away by themselves, does it really take 8 weeks--lost,depressed and scared ,help

Title: Re: hello-never thought it would be me
Post by FZfan on Aug 23^rd, 2004, 8:17am

robin1,

Sorry to hear of your pain. From your post, it sounds like you have been given bad information about cluster headaches. Even though your gp thinks that's what you have, I would urge you to take the cluster quiz, available on the menu to the left of the screen, and seek out a knowledgeable neuro to confirm the diagnosis. Please do this.

Having said that, if cluster headache is what you have, try not to be scared. Read everything you can on this site and educate yourself, because you will probably need to educate your doctor. For one thing, antibiotics and paracetamol (whatever that is) will not cure cluster headaches because there is no cure. There are many things that can be done, though, to abort or lessen the pain and there are also strategies for prevention of the attacks. What will work best for you is something you and your doctor/neuro will need to figure out.

One thing that works for a good majority of sufferers that is relatively easy to get is oxygen. Breathing high flow rate o2 through a non-rebreather mask can be very effective at aborting the attacks. There is an oxygen info button on the menu to the left. Read up on it, get it, and use it correctly.

If you have clusters, don't bother going to the hospital. There is very little they can do for you in most cases.l

Smoking does not cause clusters. It's good that you have quit, for other reasons, but you will find that a higher than normal percentage of cluster sufferers are smokers.

Again, if clusters are what you have, the mild lingering pain you feel all day are what we call shadows.

There is no standard 8 week cycle. Cylces vary widely from person to person, and even vary widely for each person. In my case, I've had cycles as short as 2 weeks and as long as 6 weeks. I never know how long a cycle will be when it starts.

Yes, clusters will go away by themselves, unless of course you are chronic.

You brought up a lot of questions and I tried to address most of them. If you do have clusters, you have come to the right place. Yes, the pain sucks, and sometimes it seems too hard to take, but if you hang out here you will find great support for what you are going through because we truly understand. That alone can go a long way toward easing the depression.

Don't be scared robin1. Pull up a chair and tell us more about yourself. And get your diagnosis confirmed, please.

Welcome to clusterville.

Title: Re: hello-never thought it would be me
Post by judyw on Aug 23^rd, 2004, 9:45am

Welcome robin1, I am sorry you need to be here, but here is the best place to be for the information and support you need at the moment...the information above is great, please educate yourself and know the steps to help yourself...we can support you in many ways here, even with giving your family and friends a place to go to help them learn about what is going on with you...ask them to check out this site, too...there are special forums for Supporters and all are welcome...do not hesitate to post with sharing, questions, or just to vent...it helps and we understand...wishing you pfdan...judyw

Title: Re: hello-never thought it would be me
Post by IndianaJohn on Aug 23^rd, 2004, 10:59am

Hello robin and welcome. you've beeen some very good starting advice on how to proceed.

It will get better.

I've had CH for 12 years now and my own mother still doesn't get it. Try to get your family to take a look at this site, it will help them understand.

It will end Robin, things will get better.

Take Care!

John

Title: Re: hello-never thought it would be me
Post by Gator on Aug 23^rd, 2004, 5:43pm

Welcome to the website. Sorry for you to have a reason to be here, but glad you found us. FZfan has covered it all quite well. Lots of myths out there. Educate yourself. Information is your best weapon against CH. It appears you will find yourself educating your doc.

Here are a couple links that might help:

IHS Classification Guide Clusters start on page 44.

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Info on preventative, transitional and abortive meds as well as surgical alternatives.

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

You can't print the IHS guide, but you can give the url to your doc. Print the other and take it with you next time.

Again, welcome.

Gator

Title: Re: hello-never thought it would be me
Post by TxBasslady on Aug 23^rd, 2004, 6:11pm

The good thing is that you're not alone. We have all felt the way you do, at some point.

FZ is right, smoking is not the cause, and not smoking is not the solution. Matter of fact, I would not make any drastic changes in your situation. How long have you smoked?? If you have smoked for a long time, some of this could be withdrawal. No sense in adding to the pain that you already have. (That is just my opinion)

I try to be very consistent. If I change anything or any part of my daily routine, I have a fear of getting hit. I am currently in cycle, I am episodic. My hits always come at night, while I'm asleep. I have been able to control this cycle, somewhat, with Melatonin. I get the shadows.....and Excedrin Migraine seems to knock those out. But....the beast is still there....I can feel it.
I do take a triptan med, when the pain is totally unbearable.

There are alot of meds and home remedies that will help, if you do indeed have CH.

When you're scared, come here. Usually someone here 24/7.

I urge you to get a correct diagnosis.....then you can seek out the options you have, as far as medication.

PF vibes,

Jean

Title: Re: hello-never thought it would be me
Post by thebbz on Aug 23^rd, 2004, 11:50pm

Well said by all. Get to the neuro. On the OUCH website there are exellent descritive forms for friend and employers describing what you are going through. Show them, after a proper diagnosis. CH does not kill you. Just makes you think it. Hang on many here have lost alot from these things. Be tough and fight the fight ,and it is a fight. "As we endeavor to perciviere"
BB