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Cluster Headache Help and Support >> Getting to Know Ya >> First time posting, Long time sufferer.
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Message started by jmiller13 on Nov 14th, 2011 at 10:48am

Title: First time posting, Long time sufferer.
Post by jmiller13 on Nov 14th, 2011 at 10:48am
My name is Josh and for 13 to 14 years, I've suffered with CH. I'd like to think that since I'm such a veteran, that I have some sort of control but, I don't think that anyone or anything could ever control CH. A couple years back, I developed a knot in the back of my neck, behind my affected area. I believe that it now triggers shadows, even when I'm not in a period. I've been to so many doctors and I've been on so many medications that I'm just sick of all of it. I've been seeing a chiropractor and I'm not even sure if it's helping or not. I was hospitalized by a headache center and treated with oxygen and the "cocktail." I gained no relief from either. I don't know whatelse to do. I'm on the brink of losing yet another job to this because I'm sure all of you know, there is no concentration, there is no motivation when under an attack. I just want to live my life. I don't want to limit myself to things because I'm afraid of an attack. I don't want to have to pass on opportunities because I feel a shadow. What can I do?

Title: Re: First time posting, Long time sufferer.
Post by Guiseppi on Nov 14th, 2011 at 2:26pm
Welcome to the board Josh. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


You sound frustrated, high cycle can do that to you. The trick is to have multiple options available to you. ALWAYS have your aborts handy, a full oxygen tank, imitrex injectables or nasal sprays, be religous about avoiding triggers while on cycle, be strict on the medication schedules for your prevents. All can help you lminimize the disruptions beasty has on your life. Read everything you can on this board, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: First time posting, Long time sufferer.
Post by Bob Johnson on Nov 14th, 2011 at 2:27pm
Rather than triggering a run of messages which will cover treatments from kndergarden to graduate school, how about giving us a coherent history to guide our responses.
---
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
===

Glad you found us--Welcome.

Title: Re: First time posting, Long time sufferer.
Post by believer88 on Nov 14th, 2011 at 7:21pm
Josh,

Thanks for keeping your promise.

It'll get better. And when it's bad, I'm always here. I love you :)

Let's get INFORMED and beat this sucker :)

Hayley

Title: Re: First time posting, Long time sufferer.
Post by Guiseppi on Nov 14th, 2011 at 8:41pm

believer88 wrote on Nov 14th, 2011 at 7:21pm:
Josh,

Thanks for keeping your promise.

It'll get better. And when it's bad, I'm always here. I love you :)

Let's get INFORMED and beat this sucker :)

Hayley



I think I like this Hayley...she seems like a pretty rock strong supporter! ;)

Joe

Title: Re: First time posting, Long time sufferer.
Post by LasVegas on Nov 14th, 2011 at 9:42pm

Guiseppi wrote on Nov 14th, 2011 at 8:41pm:

believer88 wrote on Nov 14th, 2011 at 7:21pm:
Josh,

Thanks for keeping your promise.

It'll get better. And when it's bad, I'm always here. I love you :)

Let's get INFORMED and beat this sucker :)

Hayley



I think I like this Hayley...she seems like a pretty rock strong supporter! ;)

Joe


I like her too.  You're a lucky man Josh, great supporter you have that some of us don't.  So on the bright side, you are ahead of the game. ;)

Hang in there and help us, help you... by answering some of the ?'s BobJ asked and we should be able to brainstorm some helpful ideas.

Title: Re: First time posting, Long time sufferer.
Post by wimsey1 on Nov 15th, 2011 at 8:10am
Quite a girl you have there, Josh. So...you took the big step and exposed your vulnerability to us by admitting the pain is so bad...we get it. We've been there. We are there. And as Bob said, we do have all kinds of advice on how to beat back the beast, some even better than mumbling incoherently while rocking back and forth. But...as Bob said, give us some background. Who diagnosed you, when, what was tried, what effects did it have...that kind of thing. I think you'll be surprised at the range of experiences here and what has worked or not worked for us. Look forward to hearing more. God bless. lance

Title: Re: First time posting, Long time sufferer.
Post by QnHeartMM on Nov 15th, 2011 at 1:32pm
Welcome Josh - I'm a supporter (to Guiseppi who already introduced himself to you). One thing I have learned in our 31+ years together is to keep myself informed so that I can help him when he's in cycle. Am glad to see that Hailey is also doing this for you. We supporters can be the voice of reason when you can't codjure one up because you're in pain.

Joe made mention of the Vitamin/mineral/fish oil combo that seems to be helping SO MANY people. His last cycle ended some time after he started it (coincidence? We don't know!) and thankfully he hasn't started another one now in more than a year. Remission? We don't know. But the vitamins are good for him for other reasons too, so why stop now, right?

Lots of reading here. Now it's question and answer time - and lots of people here to help you. Good luck!

Christy

Title: Re: First time posting, Long time sufferer.
Post by markca on Nov 15th, 2011 at 6:30pm
Josh, sorry you're here, but welcome.   ;)

Looks like you have some great support.  That's awesome!  Look around and learn all you can.  While there is no "cure" there have certainly been plenty of advances over the past 5-10 years that give folks lots of relief.  I won't duplicate the good info above.

I did get the sense from your and Haley's posts that there was some reluctance on your part to join and post.  Congratulations on taking that step.  You will learn a lot here.

Let me tell you something that I never got until I found this website.  These are truths that we here all know, but that maybe you haven't heard yet:

No, you are not weak.  Yes, the pain really is that bad.  No, it's not a migraine.  Yes, when in a cycle it's exhausting and depressing.  No, doctors don't know enough about CH.  Yes, the pain really is that bad.

Cluster headaches are only "headaches" in that it's a pain that happens to be in your head. In actuality its a neurological disorder (with no known cause or cure) that manifests itself in the worse imaginable pain known to man.

While you may never be pain free, using the information on this site, through trial and error, will result in a substantial decrease in frequency and severity.

Good luck!  And you are blessed to have the supporter you do.

Title: Re: First time posting, Long time sufferer.
Post by LasVegas on Nov 15th, 2011 at 6:36pm
That was well written and very supportive Mark!  You're a decent guy! :)

Title: Re: First time posting, Long time sufferer.
Post by bejeeber on Nov 15th, 2011 at 8:44pm

believer88 wrote on Nov 14th, 2011 at 7:21pm:
...It'll get better.


Hayley is absolutely right about that Josh.

I can see how since you've been to the headache center and it didn't help you could lose hope, but lotsa CH'ers have still found significant relief in such cases.

The treatments that Giusssepi outlined are a goldmine, and I imagine you may not have been given HIGH FLOW 100% O2 yet, which has made all the difference for so many of us.

I've been quite inspired by my personal experience with the clusterbusters approach, and by seeing many others go into extended remission with it. No more cocktails for me.
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Title: Re: First time posting, Long time sufferer.
Post by believer88 on Nov 17th, 2011 at 10:09am
He's not so good at responding to posts, so want to keep you all updated: He is starting Batch's supplement regimen today. Hoping for the best.

Title: Re: First time posting, Long time sufferer.
Post by LasVegas on Nov 17th, 2011 at 10:26am

believer88 wrote on Nov 17th, 2011 at 10:09am:
He's not so good at responding to posts, so want to keep you all updated: He is starting Batch's supplement regimen today. Hoping for the best.


Sure hope he's not gambling on that alone. :-/

See my reply #436 on this "123..." thread under Medications board.

In a nutshell, I typed....  I waited to start the Verapamil as I would prefer something non-harmful such as this regimen opposed to Verapamil which does have medical risks/side effects to the user.  I'm sure you can easily do the math, I have regretfully gambled on this regimen, holding off on Verapamil, while being tortured many times daily for many weeks in hopes this regimen would help.

My experience gambling on this regimen, holding off on preventative meds such as Verapamil, has cost me thousands of dollars of time away from work, hostile conflicts with my boss and potentially being terminated from my job, a loss of 4+ yr relationship with girlfriend, countless nights sleep, public humiliation, unproductivity in every aspect of my life and extreme emotional stress to dear family.

Personally, I would not wait on holding off a transitional med (Prednisone taper) and preventative treatment (Verapamil, Lithium, etc) for your CH's in hopes this new regimen may/not work for you.

What if you are like me and the regimen is not effective?  Then you just prolonged the torture by the DRAGON.


The above few paragraphs are part of a posting I typed in my reply #436 on this "123..." thread under Medications board. 

Title: Re: First time posting, Long time sufferer.
Post by believer88 on Nov 17th, 2011 at 11:40am
Yes, I read that post before. He hasn't been on any prescription meds for a while, and I don't think he's planning on pursuing them again. I'm not the best person to talk to about that, I suggest maybe PM-ing him yourself.

Title: Re: First time posting, Long time sufferer.
Post by vietvet2tours on Nov 17th, 2011 at 12:00pm

believer88 wrote on Nov 17th, 2011 at 11:40am:
Yes, I read that post before. He hasn't been on any prescription meds for a while, and I don't think he's planning on pursuing them again. I'm not the best person to talk to about that, I suggest maybe PM-ing him yourself.

    Will he come back here?

           Potter

Title: Re: First time posting, Long time sufferer.
Post by believer88 on Nov 17th, 2011 at 12:43pm
Potter: More arm-twisting underway... :-P

Title: Re: First time posting, Long time sufferer.
Post by vietvet2tours on Nov 17th, 2011 at 12:46pm

believer88 wrote on Nov 17th, 2011 at 12:43pm:
Potter: More arm-twisting underway... :-P

Tell him there ain't gonna be no more..... unless he comes here.

     Potter

Title: Re: First time posting, Long time sufferer.
Post by Mike NZ on Nov 17th, 2011 at 4:18pm

Potter wrote on Nov 17th, 2011 at 12:46pm:

believer88 wrote on Nov 17th, 2011 at 12:43pm:
Potter: More arm-twisting underway... :-P

Tell him there ain't gonna be no more..... unless he comes here.


That too has been mentioned by some as a way to abort a CH a few times. Although personally I'm not quite sure how anyone could manage it in the middle of a high Kip CH.

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