Greetings to all;

My name is Jason and I am a new poster here on this site. I have suffered with episodic cluster headaches off and on for nearly 20 years....I am 37 now, and the first 16 of those years I had no idea what was the matter with me so I suffered in complete silence. About four years ago during an attack that sent me to the brink of crazy, an astute GP sent me onward to a neurologist to get checked out for cluster headaches. Sure enough.....but what a relief to know that there were at least some things I could do that would HELP manage the PAIN !! Since that time, I have gone through two cycles and I am apparantly three headaches into a third cycle presently with a "shadow" that just fired up again a few minutes ago.

Compared to some of the chronic sufferers who post here I almost feel guilty for posting. My remission periods have been relatively long.....long enough to ALMOST forget that I suffer from these things. Prior to my current cycle, my last bout was about a year and a half ago and it lasted about 8 weeks.

Zomig nasal spray has been a good abortive....my only complaint is that it takes the better part of an hour to work but it sure beats slamming my head into a wall for much or all of a night which is what happened prior to treatment.

I just started today on Verapamil as a preventative but after reading some of the many posts on the subject, I question the dosage....40 mg in the morning and again at night. I guess the only thing to do is try it for awhile and see if it helps. My system is relatively sensitive to drug therapy....other than cluster treatments I am on no medications except Allegra for seasonal allergies. My wife and I live a relatively benign and healthy existance as farm business owners in College Grove, TN which is just south of Nashville.

I was interested to read about oxygen therapy...this is something I may look into in the very near future to gain some relief from these excruciating headaches should this cycle choose to persist.

Thanks to all the posters and to whomever runs this site. It is a godsend as I sit here with my "shadow" wondering whether or not I'll get any sleep tonight or whether I will be pacing floors, pulling hair and pounding my head in a few hours....

Kind regards to you all, and best wishes for a pain free night for everyone !

Jason

G'day Jason and welcome to the nut-hut. There's many of us took years to find a name for the beast but in some way find it re-assuring to know that we're not actually insane.

As to the oxygen, it's ceratinly worth a look-see and the big trick is get it happening immediately you get belted. Every minute you wait will make it less effective.

Good luck and let us know how you get on.

Cheers and beers,

Brian down under.

Welcome Jason,
    I am also using Verapamil, but I'm 360mg per day.
                      Good PF Luck To Ya
                             JPC

welcome jason, ill tell you the same thing i was told just the other day,,"it took ya long enough to get here" :)  i may be wrong but sounds like you could use a good dose of prednisone to send the beast packing for a while.melatonin (herbal supplement over the counter) can be helpful with a good night sleep as well.ask your neuro about it on your next visit or call him or her.they should understand the urgency..(wish mine did sometimes)

-jason chronic ch-

Welcome aboard Jason,

Definitely look into O2, but no hurry.  Day before yesterday would be soon enough! :D  Pardon my insensitivity. ;D  That would be something I would do as soon as the Dr opens his office in the morning.  F4 doings so, read the "oxygen info" button on the left, and the threads on oxygen at the top of the Getting to know ya page so that you understand it somewhat thoroughly.  I say this so that you will know what to ask for, and not t accept anything less.  If you do you will not have success and will think that O2 doesn't work.  In fact, it works very well for approximately 70% of us, and to a lesser degree for others.  Very few of us get no relief.

There are two BIG advantages over regular medications, (other than its efficacy),  1) NO side effects, other than feeling wonderful when the hit breaks in just minutes,  2) it is very inexpensive.  Even if you have to pay it out of pocket you can usually work out a deal with your provider when you are paying cash.  Tell them you need it for CH, and that you are paying cash because of no insurance and they will usually give you a remarkable price.  I know my supplier gave it to me for less than they charged the insurance companies.

All the best,
JJerry

Welcome Jason,


Jason wrote on Oct 22^nd, 2008 at 11:01pm:

Compared to some of the chronic sufferers who post here I almost feel guilty for posting.

don't even think that!
Pain is pain is pain is ... well I guess you've got the point.

Oliver

Thanks for all the speedy replies !! I had a relatively pain free night....just what the doctor ordered in terms of getting some rest.

Honestly, I think the worst part of the cluster cycle for me is NOT dealing with the actual headaches, as difficult and painful as they are to contend with. It's not knowing whether or not the shadows are going to morph into something else.... At the very beginning of this bout my shadows were an almost constant presence and I would catch a twinge every now and again that had me ready to hang from the ceiling but this seems to have diminished somewhat, knock on wood.  

I like the idea of oxygen therapy and I think I am going to visit with my doctor about it early tomorrow. We are very fortunate in that we have good insurance that will probably cover it, and if not it won't break the bank to pay for it out of pocket.

Thanks again for all the replies. Knowing I am not alone lends as much therapy as anything else.

Pain free days to everyone.

Kind regards;

Jason

Welcome to Clusterville. Took ya long enough to find us. :)

O2 O2 O2!!!!  Greatest thing since sliced bread for about 70% of us (I'm one of the chronics and swear by it).

Red Bull (keep it handy for emergencies -- first sign of CH - chug a can - can stop a hit in its tracks - sometimes - nothing is perfect).

Melatonin at night before bed. Helps ya get thru the REM sleep (where the beast likes to visit). Gets you rested up for the day.

But get the O2 immediately.... And I'm not an O2 salesman nor do I play one on TV -- just a believer....

Hugs BD

Jason wrote on Oct 22^nd, 2008 at 11:01pm:

Compared to some of the chronic sufferers who post here I almost feel guilty for posting.

I guess I'll have to welcome you with a smack up the side of the head!  LOL!  You have clusters.  That is enough!  You have every right to be here, and you suffer with the worst pain know to man!  It does not matter if you are episodic, as you are, or chronic, as I, and that old broad, Barb, above, are, you still have immense pain!  Never think that you are any less than the rest of us!

Now, let me talk about something you have never heard mentioned before ... OXYGEN!!! LOL!!!


Jason wrote on Oct 22^nd, 2008 at 11:01pm:

Zomig nasal spray has been a good abortive....my only complaint is that it takes the better part of an hour to work but it sure beats slamming my head into a wall for much or all of a night which is what happened prior to treatment.

It is asinine to have to suffer for an hour before you get relief!  With most of us, we get complete relief in 5 to 10 minutes!

Get thee off thine ass, and GET TO THE DOCTOR!  And don't leave there until you get the prescription for oxygen!  Read the thread, at the top of the medications section, about getting a doctor to prescribe.  The last post of that thread has the wording for the doctor to use, to get the least amount of grief from your insurance company.

Anyhow, I have babbled on for long enough (that happens when ya get to be a senile old coot, like me).  

Welcome aboard!  And ask whatever questions you may have.  There is sure to be someone who can help you!

Chuck

Welcome and dont feel guilty for not being chronic and posting here,  it surely doesn't make me feel beter being chronic I wish everyone could be episodic or pf.  Keep reading and make copies of any thing that pertians to you,  I highly recommend o2 it doesnt work for all of us but 70% makes it a must try,  if you are going to take triptans(zomig) you should really think about Imitrex injections they start to work within five minutes and normally for me near full relief in 10-20 minutes and caffine and energy drinks are great I use them as both a prevent and an abort I drink coffee and/or MT. Dew all day to try to keep the beast away and when he come to visit I slam an energy drink that has atleast 1000mg of taurine. good luck and keep reading,    Phil [smiley=smokin.gif]

Hello and welcome my name is Bill, 40m in Cleaveland just like you i got them a long time ago and took the pain for years, also my cycles were far enough aprart for me to forget about them, but it only takes a millasecond to be reminded. For me i learned alot here, and it was what made me try 02 and it took some time to figure out, mask and right flow rate and all... But now i can stop a full blown in less than 5 MINUTES, or just bash it right away from even starting, im not kidding it is the way to go. Also you may want to look into MELATONIN it will help with the night hits, talk to your doctor 1st, but for me it was a no brainer and it helped right away, good luck and stay active on the board. Be Well. Coach Bill

Thanks again to all the posters here !! It would seem that this is a close knit community....no surprise really given the pain we all endure when the cycles are active.

I have already tried the caffeine route and it seems to help. Also, it would SEEM that the Verapamil is starting to have an effect, four days into it. Or maybe it is just wishful thinking on my part.

I have prednisone on hand at all times for another condition ( I haven't used any in over a year) and I may try that after talking with my doctor on Monday as well.

Had a K4-K5 yesterday evening about this time and chugged a 20 oz cup of coffee which seemed to lay it in it's tracks perhaps also thanks to the Verapamil. My times vary by bout but this round seems to come into it's own between 9 and 11 pm....not typical times for clusters and not typical for me in past cycles....12:30 or 1 am would  

I didn't make it to the Dr. on Friday....the joys of self employment prevented that...there are no paid sick days when you run a farm....the animals don't much care how you feel and when you sell beef and board horses for a living, the customers and farm work come before all else. I hope to get there on Monday or if not then, definitely Tuesday, and Oxygen will be high on the list of topics along with Melatonin and probably prednisone. Honestly, anything I can do to lay the pain down would be worth the effort and time. Unless you suffer from these things, I really don't think you could have any idea about the pain they bring on. My FIL was asking me about that today, and the analagy that seemed to help him understand was that it felt like someone was playing the guitar with a nerve behind my eye.

All the best, and you bet, I'll be active on the boards. I may try and send my wife here as well so she can have a look around. As I am sure those of you who are married know, I haven't been a pile of fun to be around since these things have fired up again.

Quote:

I may try and send my wife here as well

PLEASE, please do Jason.   Tell her to go to the supporters board.  She will be welcomed with open arms and open hearts.   She is a part of this condition too.   We will help her.


Linda