I am brand new to this site as well as to CH in general. The last few days I have tried to absorb as much information as I possibly can on them. I read and read until my eyes cross from staring at the computer, then I read some more.

I am so overwhelmed from the information that I am reading. I have always been a pretty healthy person internally. I have had a lot of structural problems (knee surgeries, back problems, shoulder issues), but I can deal with all of that. This is something I don't know how, or if I can, cope with. I'm overly emotional, exhausted, and scared. Everything I have read leads me to believe that this problem will never go away and takes a considerable amount of effort to keep under control. I will be tied to medications and specific regiments for the rest of my life.
...and I don't even know if I am episodic or chronic yet.

What has helped you all cope with the fact that your life is never going to be the same when you started having CH?

My family mostly. They remind me CH is only temporary, it always goes away, them I'm back to being a husband and a dad again.

It IS overwhelming at first, but once you establish an effective regimen to battle beasty, it's not that hard. Easy for me to say I know, but trust me. I keep E-Tanks in my garage year round on and off cycle. Always a trex stat dose in my car when I travel. Then you just live your life as you did before...between the hits.

Hang in there, we'll help all we can.

Joe

About a year and a half ago I was in the exact same situation as you were, newly diagnosed, unsure that the impact of all this would be on my life and suddenly going from zero knowledge to finding this forum with a mass of information to absorb.

I am not unique in this and neither are you. That is the great thing about this place in that people here understand CHs, unlike 99% of everyone else.

Based on current understanding, CHs don't go away. However that does not mean that there will never in the future be something found to cure or remove all the symptoms.

What may seem to be considerable effort to control them at first rapidly becomes just part of the normal routine. Yes my routine is different to those without CH, but the same can be said of people who get asthma, migraine and diabetes to name but a few conditions.

Being scared at first is perfectly normal. In time you'll know more and more about your own CH and how they affect you. With a good abortive, like oxygen or imitrex (or similar) you'll have the ability to rapidly kill off any CHs you get and limit those with a good preventive. This control is the best thing possible to remove the fear.

As for being tied to medication, we're also tied to things like eating every day and sleeping. Some things rapidly become routine.

Not knowing about being episodic or chronic isn't hugely important. Quite often this has come up in the forums and people who are in each camp think that they wouldn't want to be in the other.

I know that life once I started to get CH would be different, but the same thing can be said for many other things, from parents having their first child to someone losing a close relative.

Life with CHs is about living between the hits, being prepared for when they arrive and not letting CHs rule your life. Do not let them define you.

Trance,  I feel you completely.  For years when I was a teen, I thought I just had sinus problems, then my GP came to the conclusion I may have CH.  my first neuro confirmed that.  This site as well as clusterbusters has given me my life back.  Yes, it sucks, but pain management is the key here.  Keep reading and realize we're here to listen and support.  I'm in cycle  now and couldn't be happier.  I have a positive attitude and that's key.  You will learn that it's key to have hope.  Read and retain everything.

Have a happy holiday!

Chad

Trance wrote on Dec 23^rd, 2011 at 6:52pm:

I am brand new to this site as well as to CH in general. The last few days I have tried to absorb as much information as I possibly can on them. I read and read until my eyes cross from staring at the computer, then I read some more. Hiya Trance...welcome aboard...sorry you have to be here.....but you will find the support, shared experience, empathy, sympathy, tough love, humor, and fellowship here like NOWHERE else! Your BEST first move. Next best (you are way ahead of the curve here brother) is read it all...digest it...read it again...it'll start to make sense, then...WHAM...become real clear....then you need to share, support...stick around...new stuff pops up all the time. It's a FAMILY..... I am so overwhelmed from the information that I am reading. I have always been a pretty healthy person internally. I have had a lot of structural problems (knee surgeries, back problems, shoulder issues), but I can deal with all of that. This is something I don't know how, or if I can, cope with. I'm overly emotional, exhausted, and scared. Everything I have read leads me to believe that this problem will never go away and takes a considerable amount of effort to keep under control. I will be tied to medications and specific regiments for the rest of my life. ...and I don't even know if I am episodic or chronic yet. Think of it as preventive maintenance...sure it's a chore....beats the heck all out of the pain and anguish. Don't worry about chronic vs episodic...I've been both...it really doesn't matter...it's just ch. What has helped you all cope with the fact that your life is never going to be the same when you started having CH? What's your choice...none!...so now we get to work. BUT, you do have a choice on how you handle it (see Joe's response  ;)). 30 years here....and one thing I know for sure...it aint gonna kill me (or you). There's other stuff that will...trust me here, I know....so that is a tremendous relief...no matter how scary the beast is. Wandering in the wilderness...like you are doing right now...is a scary, lonely, desperate experience. We've all been there...and we're still here...we can help. Someday.... you will look back...recognize what you didn't know then but know now...and help another brother/sister 8-)...and you will smile! Best, Jon

Trance,

You dont have to be tied to the meds all your life. That is a choice your making. Before these headaches began you did not have a life sentence to RX meds.

I urge you to look at another choice, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and if you have any questions just PM me.

Bat speed.. Bat speed.. BAT SPEED!!!
Coach Bill

Mike NZ has written a fine piece!

Knowledge and skill are major sources of comfort and security. And the thousands of members here bear witness to this success.

Bob Johnson wrote on Dec 24^th, 2011 at 8:13am:

Mike NZ has written a fine piece! Knowledge and skill is a major source of comfort and security. And the thousands of members here bear witness to this success.

Whada ya mean??? He said exactly the same thing I said! ;)

Although perhaps a bit more eloquently then I. Nicely put Mike.

Joe

Greetings Trance,

I'm not sure if you have gone back and read some of my posts, but if you do I think you will see the similarities in our stories.

Relatively healthy - I hadn't been to a doctor since November 2009

Suffered with the unkown for about 6-7 weeks before I heard anything about Cluster Headaches and Clusterheadaches.com.

Most of attacks were at night - lost tremendous amount of sleep over a 4 week period.

Like you I was blessed enough to get a diagnosis and see a neurologist very early on.

As an accountant I am an information 'junkie' and consequently got completely overwhelmed in a matter of a few hours.

My advice again is simple (I have to keep it simple or I will screw it up):

1.) "What you can measure you can manage" - Just like diabetes, high blood pressure or high cholesterol; Cluster Headaches is manageable. This site is chock full of technical medical studies, numerous medical therapies and alternative therapies, what it can't provide is exactly how this is affecting you and how effective the various therapies are working for you. Keep that log, diary, journal or whatever you wish to call it, notes on some of the minute things can prove to be the most valuable. For example, my acid reflux problem rears it's ugly head in the form of difficulty swallowing just before and during attacks and this accompanied by extreme gas in the form of farts.

2.) There was alternative therapies that were recommended and that I started looking into, I quickly put those on the back burner so I could determine everything I could about my triggers, my cycle and what abortive techniques work for me. In my mind this is my FIRST cycle and there will be others that I can experiment with and implement some of those alternatives.

3.) The information can be overwhelming. In short order it became very difficult to wrap my mind around much it, I had to step back and quit reading so much. It was at this point I started to enlist the help of others to read, comprehend and explain things to me. I also started asking the others on this site for clarification. (Keep in mind that this is still the internet, know who you are playing with)

4.) You indicated before that your sleep has been interupted. My ongoing lack of sleep caused me more concern and worry than the next attack or having to deal with this for a lifetime. My thinking was extremely foggy, I became a danger to myself and others when I was out driving and somewhat irritable. Although in that foggy state of mind it is hard to realize what you are doing. Think about what you are doing and take more precautions than you think necessary - Remember you are not invincible.

5.) Pay attention to your general health - With all the hours I was awake and all the 'Walking Therapy' I was doing, and a slightly higher than average metabolism I was burning a tremendous amount of calories. On a good healthy day I am about 135 pounds on a six foot frame and have never had to 'worry' about my weight, the weight loss I experienced did become a secondary concern and needed some of the attention that was focused on the headaches and learning about them.

6.) I mentioned before about 'walking it off' as an abortive therapy. Prior to my cycle I did walk everyday for the fresh air, the chance to get away, the excercise, and mental & emotional benefit it provided...I also enjoy the time with K9 companion.

Now for the best part:

I now have a handful of abortive techniques and combinations that work for me - Oxygen, Driveway or Leash time, Energy drinks and Sumatriptan.

Tomorrow will be two weeks since I have had a major attack, I still have what may be called 'shadows' but am learning to deal with them.

My fog has lifted and yesterday I completed my first whole week at work since before my cycle began.

Just in the last two days I have managed to get my sleep patterns back on track.

My fear of leaving the house after 5:00 pm or getting to far from home is diminishing.

And what I think is most important - After watching my quality of life slip away quickly and in a very short period of time, I have begun to re-evaluate what my quality of life was Before Cluster Headaches (B.C), and realize now that there was always room for improvement and am excited to take steps to improve my spiritual, mental and emotional stability that I otherwise wouldn't have. In short I now view this beast as more of a blessing than a curse.

Don't worry about the next cycle till you get there.

If you need to vent, chat, piss or moan know I am here and frequently monitor the site.

Now, it is a beautiful day here in Northeast Ohio with the sun shining so I am off to my local Metro Park for my favorite therapy.

Blessings to us all,

d

P.S. An attitude of gratitude goes a long ways - and with that in mind Thank You for your post, whether I provided you with anything helpful I'm not sure, just know the simple fact of me replying has helped me.

As always - Thank You, Thank You, Thank You to those who have come before us. 

Damnit. THAT sir was an eloquent post. Thank you.

Joe

Thank you all for your responses!

I am keeping my head above water and remembering to breathe. I started on Melatonin and last night was my first night without a hit in a week.

It's the first positive thing that has happened to me since I discovered this demon living inside my skull.

Is is common to have a constant dull ache/pressure (not really pain, just very uncomfortable) in the exact location of your hits all throughout the day? Are those the "shadows" people refer to?

Trance wrote on Dec 23^rd, 2011 at 6:52pm:

I am brand new to this site as well as to CH in general. The last few days I have tried to absorb as much information as I possibly can on them. I read and read until my eyes cross from staring at the computer, then I read some more. I am so overwhelmed from the information that I am reading. I have always been a pretty healthy person internally. I have had a lot of structural problems (knee surgeries, back problems, shoulder issues), but I can deal with all of that. This is something I don't know how, or if I can, cope with. I'm overly emotional, exhausted, and scared. Everything I have read leads me to believe that this problem will never go away and takes a considerable amount of effort to keep under control. I will be tied to medications and specific regiments for the rest of my life. ...and I don't even know if I am episodic or chronic yet. What has helped you all cope with the fact that your life is never going to be the same when you started having CH?

Absolutely nothing helped me cope until I knew I officially had CH's, then once I self-diagnosed and confirmed with neurologists that I do have CH's what has helped me cope most is knowledge so I may be a self advocate among a very ignorant medical community.

"Knowledge is Power!"  ;)

Amen to knowledge is power!

I don't normally shadow much. But an untreated attack will leave a dull ache in my head for 2-3 days after the hit.

Joe

An update:

I had my appointment with the Neurologist today. She was very very helpful. It turns out that she is very familiar with CH and actually has a couple other patients that suffer from them.

To start things in motion, she put me on a Pred taper for a month and wrote me a prescription for a Sumatriptan injection system. I go back to see her in a month. She also told me to let her know if the Sumatriptan doesn't work, apparently some people aren't responsive to it.
She told me to keep up my vitamin regiment as that will aid in the process.

Overall, I am pleased with her knowledge on the subject.

Pred is transitional/temporary med often prescribed to ease the attacks while a preventive med is titrating to effective blood levels.

Did she prescribe a preventive med?

Trance wrote on Dec 28^th, 2011 at 5:49pm:

An update: I had my appointment with the Neurologist today. She was very very helpful. It turns out that she is very familiar with CH and actually has a couple other patients that suffer from them. To start things in motion, she put me on a Pred taper for a month and wrote me a prescription for a Sumatriptan injection system. I go back to see her in a month. She also told me to let her know if the Sumatriptan doesn't work, apparently some people aren't responsive to it. She told me to keep up my vitamin regiment as that will aid in the process. Overall, I am pleased with her knowledge on the subject.

This is my first message here in a long time.  I'm in the middle of an episodic cluster, it hits roughly every 3 years.  This year, I discovered oxygen and it has been a completely different experience.

3 years ago I was writhing around on the ground with my wife holding me in her arms, rubbing my head, etc., This year I stay close to my oxygen bottles and am able to abort 90% of the attacks.  I followed the advice from this board.  So far I've only been able to get a regulator at 8 LPM, but have ordered higher flows and the should be getting here soon.

My neurologist also prescribed Verapamil and Amatryptalin, which worked for me in the past.  I have Maxalt as a headache reliever.  It doesn't really work to kill an attack, but when I take one I tend not to get another for 8-10 hours.  That was helpful on Christmas when my presence was requested by my 2 year old daughter!   :)

Long story short, if you don't like the pain (who does?) find oxygen as soon as possible.  It really is the best thing you can do for yourself.

Good Luck!