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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello
        
(Message started by: noranate on Dec 7^th, 2006, 12:32am)

Title: Hello
Post by noranate on Dec 7^th, 2006, 12:32am

Hi my names Pete and I am a lucky sufferer of 22 years

Title: Re: Hello
Post by RichardN on Dec 7^th, 2006, 12:52am

Hi Pete

Now you're going to have to explain the "lucky" part of that. You've definitely got me curious.

There are many here who've suffered for decades . . . I guess I could count myself lucky to have only had them for . . . almost six years, and VERY lucky my wife found this site for me which gave me my life back.

So, 22 yrs of these bastards . . . how old are you? Tell us some more about yourself. Do you have a successful med regimen, . . . . that is, one that's working for you?

Be Safe, PFDANs

Richard

Title: Re: Hello
Post by chopmyheadoff on Dec 7^th, 2006, 3:45am

welcome to the nuthouse 8)

fill us in . . are you episodic , chronic etc etc

chop

Title: Re: Hello
Post by noranate on Dec 7^th, 2006, 3:33pm

I,m a chronic sufferer. I,m 38 and live in New Hampshire. My wife also is the one one who found this site. When she first read the letters on the opening page she had a breakdown. She saw me in those letters and finnallt realized that what I was going through was so real and that other people had it. It got to the point for her that she didnt know what to make of it. I think at some point she almost thought I was faking. Then I saw it and had a breakdown my self. For the first time I realized I wasn,t alone. I finnally knew I wasn't crazy. The doctors would look at me like I was a baby. Not so much now but definately in the begining. I am now on Verapamil Lexapro Neurontin Imitrex injections and Percocets and Oxygen. The oxygen really does not work for me except to help calm me down. The Imitrex seems to be selective as to which headache it works on and the other drugs are hard to tell if they work. Its all trial and error I guess. Atleast I am at the point now that I have found a doctor who will listen and people who i can chat with that understand what I am talking about. Thank for welcoming me. Its a real comfort. :)

Title: Re: Hello
Post by seasonalboomer on Dec 7^th, 2006, 3:50pm

Pete,

Welcome to best forum for Clusterheadaches sufferers and supporters anywhere in the universe.

Glad you seem to have things as manageable as possible. Having a multifaceted arsenal is the difference between living life versus trying to figure out how you're going to make it from day to day.

What kind of O2 volume are you using? If you're using less than 10-15 lpm you may find that you need a bigger regulator, along with the fact that the type of mask makes a huge difference. It MUST be a non-breather mask or it won't work worth a hoot. Check out www.clustermasx.com, it's a product that a fellow sufferer has put together that many of us swear by.

Even if it worked 50% better for you, you can do the math and see what kind of relief that would mean. We've had many folks who had said O2 didn't, or stopped working for them and after they got clustermasx they were back on the O2 bandwagon.

Worth a look.

Scott

Title: Re: Hello
Post by Sandy_C on Dec 7^th, 2006, 5:14pm

Hi Pete, and welcome to this crazy family. You have come to the right place to learn about CH, what it does to you, what it does to your loved ones, and how to arm yourself to battle it. Read everything you can on the buttons to the left of your screen. Ditto, absolutely about making sure you have the right 02 regulator and, more importantly, the right mask. You will also learn through your reading that pain killing drugs usually don't work on CH - your Percosets probably aren't doing a darned thing.

Please keep us posted on how you are doing. Ask questions, anything - I was once told the only stupid question is the one you didn't ask - so ask away. Someone is always here to try to help.

Sandy

Title: Re: Hello
Post by BB on Dec 7^th, 2006, 6:50pm

Hello and welcome,

Just want to add that my husband was diagnosed with his first cycle from Aug this year. He tried to use oxygen for 2 months without much success. Only after we read up a lot on oxygen use and talked to people about how to use it properly that he learnt the correct way and now it works really well. If he gets to it early enough he can abort most attacks.

The key to oxygen success seems to be:

1- Use a proper non rebreather mask, preferably a clustermasx.
2- Use cold compressed oxygen if possible. ( Medical grade )
3- Use oxygen as soon as possible at start of attack. Dont wait until the pain is bad as it wont work then.
4- Stay calm, upright and breathe slowly but deeply. Try not to get panicked nor hyperventilate. That wont work either.
5- Once the pain is gone, stay on oxygen for another 5- 10 mins, slowly reintrodue room air.
6- Ice on neck/face/temple also helps with pain.
7- Drink lots of water.

Good luck and painfree wishes to you.

Annette

Edited for spelling mistakes

Title: Re: Hello
Post by noranate on Dec 7^th, 2006, 11:03pm

I am using the rebreather mask and was prescribed 15 lpm. I think my biggest problem is the whole relaxing thing. I almost go into a seizure like state so my breathing becomes real shallow and fast and I cant stop moving. My poor wife tries to hold me but she just cant. I guess my reaction defeats the purpose of the oxygen. I know the percs dont do a damn thing. The collect in a bottle in the medicine cabinet. I work in the construction field and do alot of heavy lifting and crazy stuff so if I get hurt I use them for that. Have any of you guys felt the need to resort to hurting yourself to try and relieve the pain. i get these strange urges that almost become impulses that sometimes I feel I cant stop. Once I thought it was a good idea to soak a face cloth in scalding water and hold it against my forehead and eyes to get rid of the pain. Its crazy stuff.

Title: Re: Hello
Post by georgej on Dec 8^th, 2006, 12:49am

on 12/07/06 at 23:03:10, noranate wrote:

I think my biggest problem is the whole relaxing thing. I almost go into a seizure like state so my breathing becomes real shallow and fast and I cant stop moving. My poor wife tries to hold me but she just cant. I guess my reaction defeats the purpose of the oxygen.

Have any of you guys felt the need to resort to hurting yourself to try and relieve the pain. i get these strange urges that almost become impulses that sometimes I feel I cant stop. Once I thought it was a good idea to soak a face cloth in scalding water and hold it against my forehead and eyes to get rid of the pain. Its crazy stuff.

It's panic. I'm convinced that panic is the difference between a kip 9 and a kip 10.

It's extremely difficult to learn not to panic--it goes against all our impulses. It's asking a lot to expect that we can face extreme pain without reacting to it. Our reaction is to fight and rage and struggle against it, pace and smack our heads into walls, bang against the floor.

But it is possible to learn to control our reactions to a hit--and it's worth it. It makes them easier to get through. Try this next time:

First, accept that you're getting a hit. It's going to last as long as it lasts. It's like a storm. You don't control the weather, and you can't control what the hit will do. It does what it does. Eventually it will end. You can get through it.

The impulse (almost irresistible) is to fight against it--to try to escape it. That may be an appropriate reaction from an animal in a trap. But you are a human being, and not a trapped animal. You can control what you do, and how you react. Don't pace. Don't fight. Force yourself to sit upright, and take deep, slow breaths. This will help to calm you, and will put more oxygen into your system. If you're using oxygen, so much the better--it will be that much more effective. It may be necessary for you to be alone, so that you can concentrate.

Remember--there's an upper limit to the pain. It goes so far--and no farther. You know this to be true.

Your adrenalin is going, and your body is telling you that the pain will keep ramping up and up and up into infinity--but that's not true. That reaction is what causes panic. You are in pain, but you are still a rational person. Remember that you've gotten through others that were just as bad or worse. Breathe slowly and deeply.

Try to focus your attention away from the knifepoint of the pain--concentrate hard on an adjacent area of the head where the pain is less intense. Your attention will be diverted again and again to the knifepoint, but again--don't panic. Move your attention away again. Breathe slowly and deeply until the medication or the oxygen takes effect, or until the hit is ended.

Do this often enough and long enough, and you'll find that you enter a trance-like state of intense concentration where the pain still exists, but your attention is not focused on it directly.

There's nothing mystical or spiritual about this--it's just a coping technique that can help you endure a hit.

Sounds nuts, I know--but learning to control how you react to a hit can really make a difference. We all have somewhat different ways of doing this, but they amount to the same thing. Learning to control your reactions is just as valuable as any medication.

Best wishes,

George

Title: Re: Hello
Post by jon019 on Dec 8^th, 2006, 2:01am

Hi Pete,

You aint crazy, but welcome to the nuthouse. Some good advice here. George has a different take than some and he may say it sounds nuts, but it isn't.

Lots of different ways to deal with the beast. You just gotta keep trying, keep questioning, AND keep coming back here.

Regards,

Jon

Title: Re: Hello
Post by noranate on Dec 8^th, 2006, 12:59pm

Thank you for the incredible support. Now that I read it it will be in the back of my mind the next time. I will give it my best shot. Its so nice to discuss this with understanding people. What a relief. Thanks to all. Its like a sanctuary. I hope I have the oportunity to help someone. Has anyone had a sneezing fit abort a headache for them? That has happened for me on a few ocassions. Sounds weird but I was glad it happened.Unfortunately my 3 year old daughter is now starting to realize there is something wrong with daddy. How do you guys deal with that?

Title: Re: Hello
Post by edbeek on Dec 8^th, 2006, 4:50pm

Hi Pete,
I'm a newbie here too but a long term episodic sufferer. I just want to say that I agree 100% with what George said.
Diversional thinking helps me get through each episode
Staying calm and confident is a major weapon. I accept that the pain is going to be there for a while(1 hour max for me), but I can still think of other more pleasant things. Often after an episode I look at the clock and think 'wow that didn't seem like an hour'

Title: Re: Hello
Post by Jonny on Dec 8^th, 2006, 8:38pm

on 12/08/06 at 12:59:34, noranate wrote:

Unfortunately my 3 year old daughter is now starting to realize there is something wrong with daddy. How do you guys deal with that?

Be as honest as you can, you cant hide what you have forever, so be honest!.....just tell her what you think she can handle at that age.

Title: Re: Hello
Post by noranate on Dec 8^th, 2006, 9:48pm

Right now my wife has her kiss my fore head to make my "headits" go away. Somehow through all the pain that puts a smile on my face. Too bad we couldn't find a way to put that into an injection and use that. :-/

Title: Re: Hello
Post by jon019 on Dec 8^th, 2006, 10:24pm

on 12/08/06 at 21:48:13, noranate wrote:

Hi Pete,

Now that puts a smile on MY face. Jonny is right. Don't exclude her, let her "help". Years from now, you will BOTH have treasured memories.

Best,

Jon

Title: Re: Hello
Post by Jonny on Dec 8^th, 2006, 10:54pm

on 12/08/06 at 21:48:13, noranate wrote:

Right now my wife has her kiss my fore head to make my "headits" go away. Somehow through all the pain that puts a smile on my face.

Thats a great start, Bro

You cant put one over on a kid if you have to keep it up.

32 years in this game myself and I did what you are doing now.....it will work....trust me!

Title: Re: Hello
Post by noranate on Dec 16^th, 2006, 11:11pm

HAS ANY RESEARCH SHOWN THAT THESE DAMN THINGS ARE HEREDITARY. i WOULD HATE TO KNOW I AM PASSING THEM ON.

Title: Re: Hello
Post by georgej on Dec 17^th, 2006, 12:15am

There is some indication that CH may be weakly inherited. I know that Bob Johnson can give some good citations to this. There are some here who have parents, children, or siblings who also have CH.

But it's far from universally true. I'm the only one in my genetic line, and the same is true for a great many others here.

So yes--it seems that it can be inherited, but very often it is not.

Best wishes,

George

Title: Re: Hello
Post by Guiseppi on Dec 17^th, 2006, 3:25pm

My daughters are now 22 and 20, neither has so much as a migrain problem so I wouldn't sweat it. I worried about that a lot!

My kids were part of the recovery team at my house. Before they were in their teens they could rig up an oxygen botle, get the ice packs, a couple cafergot, a quick kiss and then leave daddy alone. They can handle much more then we think!!

Welcome to your new second home, there are some beautiful people here!

Guiseppi