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        New Message Board Archives >> 2006 General Board Posts >> My Story
        
(Message started by: cajunnavyguy on Aug 17^th, 2006, 9:07am)

Title: My Story
Post by cajunnavyguy on Aug 17^th, 2006, 9:07am

Hi, I'm Ken. I'm from Louisiana, 36 yrs old and have sufferd since I was 20. Well, I guess it's the same as everyone else here. I have had episodic CH for about 16 years now and of course have been misdiagnosed for 16 years. Everytime I would go to the doctors, I would get a different answer. "Migraine", "sinus infection", I'm sure you guy have heard it all. I probably would have gone on never knowing what to call the beast without this website. I actually got excited when I read the stories here because it is exactly what has been going on with me all of these years. My cycles used to come about every year, sometimes every 2 years. I am in the middle of the worst cycle of my life right now. My past visits from the beast usually were 1-2 weeks long with never more than 1 HA a day. This cycle has been going on for about 6 weeks now and I am now getting 3 a day on my bad days. I guess my age is catching up to me. I hope every HA is my last, but I know it's not. I have the constant shadow hanging about me now. Being that I'm in uncharted territory with the length of my cycle, I don't have the pleasure of knowing that it will be over soon, because I have no Idea how long this one will last. I have an appointment with the neurologist today, but, I'm a little pessimistic after reading the boards here that any relief will come from the visit, but at least now maybe I can get some confirmation that I'm not crazy, these headaches are a real disease.
So, I would like to thank everyone who has posted here, because without you guys, I would not be going to the doc informed. So. I'll post how the visit goes if anyone cares to read it, and if he gives me meds, I can find out the ups and down of it from you guys. Sidenote: When I was diagnosed with Migraines, the doc gave me Topomax. I had to throw it away. It didn't help and I was a drain on society. I couldn't get off of the couch, missed a week of work, and could barely tell you what my own name was. If it would have helped, I would have stayed on it, but with it not working, I couldn't take the chance of losing my job.

Hope to hear from you guys,

Ken

Title: Re: My Story
Post by ExplodingEyeBall on Aug 17^th, 2006, 9:20am

Welcome home Ken.

Before you know it, you'll be up to your ears in advice. Listen to the people here because they know what they are talking about.

Also read as much of the info here as you can soon although, if you arae like me, you probably did that as soon as you found the place.

Experiment with the advice (the stuff that's legal any way ::) ) and see what works for you.

A lot of people swear up and down on the Oxygen treatment. You'll find info about that over there on the left.

Imitrex injectors work pretty good for me but cause rebounds.

An easy thing I found through here was slamming a Red Bull as soon as the HA starts to hit me. It doesn't knock it completely out but it will at least turn a head banger into a shadow.

I have also got a weird cycle myself. Last year, I had only shadows but they lasted a long time. This year I got slammed left and right by very powerful CH for about 4 weeks.

Bookmark the link to this site and stay around.

Pat

Title: Re: My Story
Post by seasonalboomer on Aug 17^th, 2006, 9:20am

on 08/17/06 at 09:07:43, cajunnavyguy wrote:

Ken,

Welcome, I'm glad you found us and share your feelings of relief upon finding a place like this to learn and share.

The best way to make that neuro appointment one of pessimistic expectations into one of productive opportunity is to go in with as much ammunition as you can. In other words, be your own best proponent.

You'll see the links on Clusterheadaches.com that talk about medications and treatments. Read up and print them. You've learned about a few with your own experience probably but there are so many that have been used and some are good and some are bad. Benefit from other's experiences on these boards in learning more.

MOST IMPORTANT:

1.) If the neuro agrees with you're feeling that it is definitely CH, then don't let him let you leave without an O2 prescription. Oxygen is the most kick-ass abortive around for most of us. See the O2 link for the spec's you'll need. In summary don't take it unless he'll write it for 10-15lpm regulator and NON-rebreather mask (also see Clustermasx.com for a great product many of us use).

2.) If the neuro wants you to use a triptan med such as Imitrex, don't take the prescription unless it is for injectable Imitrex (or at the very least the inhalable). The pills won't do diddly in the time we're all looking ofr something to happen.

I can't speak to preventatives and generally live in "abortive" mode when I'm in cycle. Others can help there though.

Again, welcome. Read up and don't let a neuro appointment be a waste.

Scott

Title: Re: My Story
Post by Paul98 on Aug 17^th, 2006, 9:21am

Howdy Ken-

Glad you found us. Read up and print out before your neuro visit. Remember, he works FOR you. There are lots of ways to fight the beast and the trick is to find what works for you.

6,7,8 weeks in cycle for an eppisodic is about normal so on the bright side you might be close to being out of the woods.

Good luck with your Dr. visit.

-P.

Title: Re: My Story
Post by Shaz on Aug 17^th, 2006, 9:21am

Hi Ken,

Great to hear from you but sorry you had to find this site if you know what I mean. The guys on here are absolutely fantastic and have really helped me out when I have felt lost.

I am 46 now and like you have suffered with episodic attacks for about 25 years now. Once every two years but each cycle lasting about three months. Until I found this site last year I had also been misdiagnosed for all those years so it was fantastic to find this place.

Loads of people on here have masses of experience with different drugs and absolutely everything you need to know and they are all so warm and friendly. Just ask and they will help you out.

Welcome to the gang and hope you get pain free again real soon.

Shaz :-*

Title: Re: My Story
Post by TomM on Aug 17^th, 2006, 9:25am

Ken--first, welcome to CH.com but sorry you had to find this place. Second, I would reccomend you track your CH [cluster head aches] and shadow HA [head aches]. Me, I use my Palm Pilot to log every shadow HA, every CH, duration, meds taken, and Kip level. This way I can clearly see the pattern and show my doc where I stand. Third, read more about The Kip Scale, Water x3, Imitrex tip, etc. from the left panel of options on this site. Visit the supporters section and meds section, too. Lastly, ask questtions.
TomM

Title: Re: My Story
Post by Dragnlance on Aug 17^th, 2006, 9:26am

Topomax = Dopeomax

Hated the stuff, as it drains the intelligence level thru the floor

Dragn

Title: Re: My Story
Post by Tom K on Aug 17^th, 2006, 9:27am

Hi Ken, like everyone before me, I'm glad you found the site. You'll be up for hours reading the meds section, I know I did when I first got on here :D If you are looking for a good neuro in your area, click the OUCH website link on the left, on there, you will find the neuros that people from this site use and recommend. I found a great neuro on there and she actually listens to what I say and reads this site regularly. Hope you get some PF time soon. Don't let the Bastard keep you down, fight on and you will find that there are people who will fight this Beast with you!

Title: Re: My Story
Post by rickyshot on Aug 17^th, 2006, 9:34am

Welcome and sorry you have to be here.

A wealth of info around here although it can be overwhelming at first. CH is a big trial and error thing. What works for one person does not always work for another so don't give up. I hope you have a neuro that is open to sensible ideas. Definitely pring from the link on the side called oxygen info the pic and instructions for oxygen use a definite lifesaver at times.

I too had a horrible experience with Topamax. Forget that one if you did too.

For shadows many of us have success with either red bull, Taurine capsules or ginger powder. Check the meds and treatment board on this site. There are tons of wonderful discussions regarding a lot of treatments and meds which may give you ideas.

No there is no cure but you can find control and coping mechanisms for this thing. Venting happens often on this board and others answer quick to the rescue of just pray along with you.

Go to the OUCH.com website for even more info.

Title: Re: My Story
Post by JeffB on Aug 17^th, 2006, 10:51am

Hi dude, sorry for your pain. Lots of smart people here, pick their brains for info!

Jeff "Bos'nmate"B

Title: Re: My Story
Post by imnotbub on Aug 17^th, 2006, 11:12am

You have come to the right place.

RED BULL RULES!

Give it a try. If you get hit while sleeping, keep it next to you, bang it down as soon as the beast starts knocking on your head and try sleeping sitting up. Just my [smiley=twocents.gif]

Steve

Title: Re: My Story
Post by vietvet2tours on Aug 17^th, 2006, 11:29am

Oxygen my friend oxygen

Title: Re: My Story
Post by Mattrf on Aug 17^th, 2006, 11:36am

I would try and add something to the above but everyone has hit all the important stuff for you already. What I can do is welcome you to the funny farm and tell you, you will not find a better bunch of folks to help you with battling the beast.
Tell your family to visit the site and if they want to help support you to join and visit the support section so they can talk to others that have loved ones going through this.
Most people have not a clue about how much you suffer or how to deal with it and the people here can help them understand, plus it’s a great place for you and them to vent your frustrations to people that truly understand.

Be sure to hang around and let us know how you are doing.

Matt

Title: Re: My Story
Post by LadyElaine1 on Aug 17^th, 2006, 11:52am

Welcome to clusterville! Sorry you have to be here.
You will find lots of info her and make many friends.
We are all a little nuts but we will help any way we can.

Title: Re: My Story
Post by ExplodingEyeBall on Aug 17^th, 2006, 12:09pm

SOmebody post the link to that letter now. The one with all of the information to give to co-workers, relatives, employers, etc...

I can't find it now.

Title: Re: My Story
Post by Mattrf on Aug 17^th, 2006, 12:50pm

Here it is.

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

Matt

Title: Re: My Story
Post by JenniferD on Aug 17^th, 2006, 12:58pm

Hi Ken, welcome home.

I am episodic too X 21 years and at the 8-10 week mark I am usually taking the hardest hits. Hopefully this is a sign your cycle is coming to an end soon.

As far as preventives, I am also an ex-Topomax moron, but this year have already gotten my prescription for Verapamil. Works pretty good for me and Frova for abortive in case the vrap doesn't hold a nasty beast at bay.

The others are so right! Take lots of info with you to your doc, it really does help.

Wishing you pf time soon!

Hugs,
Jen

Title: Re: My Story
Post by TxBasslady on Aug 17^th, 2006, 1:02pm

Hi Ken,

Read all the links to the left, and print out what you need to take when you see the doc. Definitely ask about 02. It works great for alot of us.

We have a few clusterheads in your area...one in Mandeville, one in Raceland, and a couple in New Orleans. We're gonna have a get together sometime in October in the New Orleans area. Stay in touch, and maybe you'll have a chance to meet up with us.

Glad you found us. It's really great when you find you're not alone. ;;D

Let us know when you see the doc. We'll be in touch.

Jean

Title: Re: My Story
Post by cootie on Aug 17^th, 2006, 1:08pm

Hey ya Ken.........yeah you'll learn alot bein here and if nothin else you'll have a place to go when the shit gets ya down........I about freaked when I found this website cuz no one I knew had a clue what we were goin thru here at home. I felt like we had some sort of deep dark secret when my daughter was little and me and her had to go thru the agoy with Brad and tip toe around it. I think our friends still think it is just anouther 'headache'......they probly think all the hype about it is just takein it to the extreme. So when I found this place at least I had some sort of belonging.......or at least people that KNEW. I am just a supporter here but it was one long soap opera of misery all them years. Brad's been outa cycle almost 6 years now and the longer it's been the harder I think he'll fall if it comes back. Too much other crap goin on and responsibilities thrown at him.......as the world churns Pam

edit: I still can't spell................... 8)

Title: Re: My Story
Post by DonnaHar on Aug 17^th, 2006, 1:19pm

Hi and welcome. I do not have more infor than you've already received, but I do have some encouraging news.....I was episodic for 28 years, and one year (1996) , they just didn't appear, and I haven't had one since.

Why, you ask? I simply don't know, but thank God everyday. I wish and pray for the same for all of the other clusterheads in the world.

Donna H.

Title: Re: My Story
Post by stevegeebe on Aug 17^th, 2006, 1:54pm

Hey Ken.

Good luck with the Doc and let us know how it goes.

I'm just up the road in Mandeville.

Welcome home.

Steve G

Title: Re: My Story
Post by cajunnavyguy on Aug 17^th, 2006, 6:44pm

Thanks guys for making me feel welcome. You are all right about the part that noone around me really understands the pain and how much it affects everyday life. I did finally go to the neuro and finally a diagnosis of cluster headaches. It's about time and now that it has been officially recognized, hopefulkly the correct treatments can begin. I have printed up a few things I found on the web and have made my friends and famil;y read it,so I think they get alittle bit of the picture. So, I guess I should continue this in the meds section since I got a bagful of them today. Thanks again and I do hope that maybe some of us around the New Orleans area could meet and compare horror stories (lol). Thanks again and I will be visiting often now that I know I'm not alone. ;;D

Title: Re: My Story
Post by Charlie on Aug 17^th, 2006, 9:35pm

Welcome to the madhouse Ken. Glad you found us and you'll find a lot of good advice along with lots of nonsense from me and the others. It's part of the deal....

You sound like you are on the right track. Here is a technique that worked for me and others:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: My Story
Post by cajunnavyguy on Aug 18^th, 2006, 12:09am

Thanks it is worth a try, and like you said, nothing to lose but pain

Title: Re: My Story
Post by BarbaraD on Aug 18^th, 2006, 8:25am

Welcome Ken and sorry you had to find us.

I'm in Shreveport, so if you're ever up this way give me a call and we'll meet for lunch or somethin'. It's really a help to MEET another clusterhead. Steve and Edna are down around NO so try to make that Meet and Greet in Oct. They're really great people and you'll love meeting them.

Again welcome to Clusterville. And NOW you're not alone any more with this affiction.

Hugs BD