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

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

Welcome aboard Jason,

Definitely look into O2, but no hurry.  Day before yesterday would be soon enough!   Pardon my insensitivity.   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

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

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



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

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

Quote:



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