I am not new just back after being chronic for 7 years  :'(, then skipping a year.  Then for the last 2 years getting episodes once or twice a year lasting anywhere from 6 weeks to 6 months. (heavy sigh).

This was always a place for information and support that I could not have gotten elsewhere.  No one in my family was supportive....until I decided not to walk out of the room one day when my cluster started during a family get together and I let them see what happens.  I also found a couple of videos of others who were documenting their clusters for others to see and posting them on the Internet.  That turned them around in a hurry!

Anyway, I'm sorry that we all have to be here but on the other hand I am glad I am not in this alone.  Because even though the family has now seen the light, so to speak, it is still not something they can share cuz they JUST DON'T KNOW...they can only imagine and it isn't the same thing at all.

Here's to a cure!! ;D

Welcome back. :( He never seems to lose your address does he? Do you have an effective routine for managing your CH? Most important, do you have 02 yet?

Joe

Hey Kaptex, ditto what Joe said.  :)

I've tried many of the meds out there but without any luck.  The last neurologist had me on Verapamil, Lithium, Topamax, Depakote, Imitrex, Sansert, and Prednisone as well as a couple of others I can't even remember.  I also try to drink as much water as possible but have not had any luck with that either.  She also had me on just 2ml per minute of the O2 (this was all while chronic).  Nothing helped.  (Maybe I should have tried a new neurologist.)  My current MD, who is furiously doing research before he pawns me off on another neurologist, has recently tried But/Apap/Caf (Barbiturate/Tylenol/Caffeine-usually used for tension headaches) and Endomethicin, but no luck so far.  He also increased my O2 to 5ml per minute to see if I get a better reaction and I now have a mask.  Nothing so far.  Maybe the O2 isn't high enough.  He wants to put me back on the Lithium and Verapamil to see if I have better luck this time.  I'm not so sure.  When I was chronic I was on 9 different meds at one time and nothing helped.  I was a freakin' zombie!  I don't want to be there again.  I also would get panic attacks because I knew the headaches would come and there wasn't anything I could do to stop them so I was on Xanax, Wellbutrin, and Prozac as well as all the others.  That made me not only a zombie but a walking, trying to work and maintain zombie.  I had several blackouts while at work.  They only lasted a few seconds but it was the scariest thing that has ever happened to me.  I'd be standing there talking to a customer and then black out.  I would come to again standing where I had been with the customer talking to me and me having this horrible disoriented feeling not knowing what went on or how much time went by.  I won't go back to that.  I'd rather just deal.  But I'm not adverse to any suggestions that don't put me back on that much medicine all at once.

The last couple of years I have been doing like some others and using an ice pack and pacing or rocking and trying to ride it out. I have also been taking Prednisone.  I am kind of to the point where I have resigned myself to having them the rest of my life.  I do appreciate that I am no longer chronic.  The biggest fear is that I will go chronic again but until then, and this may sound weird, but as much as I hate them I would rather have them a couple times a year even if they do last for months.  I figure it's better than having them every day. :-/

I'm back to doing research again so am open to suggestions.  I know a new neurologist with cluster experience is the first thing but so far after talking with 2 who tried to tell me I had migraines because I am a woman I am not very enthused about seeing another one.

Anyway, thanks for the welcome.

Here's to a cure!! (we can dream can't we??)  :)

Welcome home unfortunately!

Family can sometimes be the pits, sorry you havn't had the support you should have had. I know a sufferer who's mother once walked over to him (whilst having a kip 10 and rolling around on the floor) and kicked him then said "get up and stop carrying on like a moron, its not that bad". I think we know who the moron was!

I'm not a sufferer, I'm a supporter but I will always try to understand and will always be around if needed.

Good luck with your journey and wishing you PFD!

                                 Regards Shell :) :) :)

Ouch!!! Okay first off your oxygen flow was way low, we preach minimum 15 LPM flow rate, with many not having success until 25 LPM or better. I use a demand valve and can usually abort an attack in as little as 6-10 minutes. I'm a 32 year episodic sufferer.

The lithium/verapamil combo, curious what your doses were and how long you were on it? That's called the "chronic cocktail" and often proves effective when other treatments have failed. The fact he is suggesting that shows he is somewhat up to date on ch.

Read the oxygen info link on the left and print out the info for your doc, some great studies he can rely on to get you the correct prescription. For 02 to work your lungs must get pure 02 and nothing else, no outside air, no exhaled air. This is best accomplished using a Non Re Breather Mask, and a flow rate of at least 15 LPM, it must be started at the first sign of an attack, if I wait until the attack is well started, it's not effective.

Also, check out    clusterbusters.com               for some "alternative treatments" that many are having success with after traditional meds failed.

Joe

A pretty good research paper I found recently is:

High-Flow Oxygen for Treatment of Cluster Headache - A Randomized Trial
Anna S. Cohen, PhD, MRCP; Brian Burns, MD, MRCP; Peter J. Goadsby, MD, PhD, DSc, FRACP, FRCP
JAMA. 2009;302(22):2451-2457.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This was published in the Journal of American Medical Association in December 2009 and you can download a PDF of the full paper, which is great for educating doctors.

The research compared the effects of high flow oxygen compared to air in aborting cluster headaches, with the conclusion:


Quote:

Treatment of patients with cluster headache at symptom onset using inhaled high-flow oxygen compared with placebo was more likely to result in being pain-free at 15 minutes.

As for the reaction of that mother, she just has no idea what a kip 10 is like, never mind how heartless it is to treat anyone like that.

I'm lucky to get great support from my family as are many here.

Hi Neighbor!!

My GP in Mesquite is very well versed on CH and had no problem writing out a script for O2 at 25 lpm based purely on what I learned from reading on this website!! 

Dallas Denny

PS  Check your PM's

I was on the lithium verapamil combo from nearly the beginning of the 7 years chronic.  I have had them since 1978 (episodic) I just didn't know what they were until I went chronic in 1996.  I don't remember what doses although I do remember it was high because the pharmacist remarked on it as well as a couple of nurses and anesthesiologists commented it when I was having surgery and I always had to explain why.  I have called to get my records from the last neurologist to find out.

I printed all the information I could find while chronic and turned it over to the neurologist, who thought she knew more than everyone else, and for awhile I believed her.  She said that 15ml was too high and refused to prescribe it.  That is one of the reasons why I quit seeing her.  I went through 3 before I found her and she was the first one that didn't try to tell me it was migraines just because I was female.  I dropped myself off ALL the meds except the steroids and had given up.  I was too frustrated and depressed to look further.  Then within 6 weeks the headaches went dormant.  Now that was probably a coincidence but whatever.  For a little over a year I was free!!

My purpose in visiting again yesterday was to again print out any information I could find so I could take it to my primary who knows a bit about them and has dealt with them before (I have appt today).  I kind of just got depressed and gave up last time.  Deciding to just ride it out rather than look further and then they stopped so there was no need for me to look for another doctor at the time.  I now have a new primary and will start back with the neurologist hunt if I have to.  It's just so much bs.  If I have to see 3 more before I find one that knows ch's I might pull someone elses hair out besides my own.   :-?

Thanks for all the info and gain this is an amazing site filled with amazing people.

Here's to a cure!!