Luzerne county Pa. here :D Hello Chris and Welcome!

It sometimes takes awhile to get the levels of the right medications correct so that you can return to work, you'll get there, hang on it'll be a bumpy ride as you have already discovered. 

You've come to the right place for support and maybe even better ways for you and your doc to treat your CH.  Read all you can here and ask others who have been in your shoes with the difficulty of treating CH and see what mixture of medications they are on maybe one of those combo's will help you.

How long were you on some of the medications you've already tried maybe an issue as well, some medications take a few weeks to get into your system enough before they have any real affect.

If you ever need to talk send a PM anytime.

Sending PF wishes your way fellow Pa.'er!
Ging...

Welcome, Chris. It certainly sounds as if you are on the right track, even if you haven't found the coctail mix you need. And you seem informed, a good thing. But, at the risk of contradicting myself, are you using O2 properly and in high flow rates at the first sign of a hit? Often we hear O2 didn't work, but then discover the user was not at high enough levels with the right mask. Also, there are some abortives and preventatives you haven't mentioned: energy drinks, meltaonin, kudzu, cluterbusters....there's still hope! Keep hope alive, my friend. It prevents that dark door of depression from slamming fully open. God bless! lance

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.
---lThis site is operated by one of the better docs in the Chicago area. Worth explore the broad range of materials you will find there--articles, etc.
==========


Given the excellent medical resources you have I should not try and offer any treatment suggestions.

BUT, with CH, patience is a major survival skill. It's a difficult disorder to treat because what is effective can vary so much between individuals. It takes much time to adjust dosing, meds, combinations of meds, etc.

Look at "where we live" in the membership section and you may fine folks near you to contact.

Wimsey, I use O2 at 15ml. This was recommended by Cleveland Clinic. Jefferson headache center had me at 10. Honestly, it rarely works as a true abortive, more like a delay.
I also tried Melatonin, but it made me so drowsy the next day I stopped. I don't think it was really helping. Most of my attacks are daytime.
I have used Red Bull, but need to be cautious with that and Verapamil at 600mg. I've had some discomfort with it.
I HAVEN'T tried the others you mentioned. Could you say more about them? -Chris

Welcome to the board Chris. On oxygen, some on the board have had to go much higher on the 02 rates to get relief, we call 15 LPM the bare minimum. Make sure you are using a Non Re Breather Mask, the key is pure oxygen to the lungs, no outisde air, no exhaled air.  I use a demand valve similar to what scuba divers use.

Do watch the energy drink useage as it can cause heart issues when mixed with your verapamil.

The "other" stuff we mention can be found at   clusterbusters.com       non main stream treatments that have saved some of our more severe cases when nothing else was working.

Welcome home, the lights always on here, always someones' ear you can bend.

Joe

Welcome Chris,

I work in Souderton and live and Emmaus.  You're going to one of the best headache centers in the region.  My neuros colleague Dr. Rozen use to work there before transferring.  I hear nothing, but good things about that place.  Anyway, i'd be willing to get a group going.  In fact, some of us have been talking about it for years.  I've talked to clusterheads on here and the phone, but never in person.  It would be great to share our war stories and what we use in our arsenals to attack this beast.
If you ever need anything, feel free to PM me.

Peace,
Chad

Hey, What do you know about that...I actually have a Manchester United jacket I picked up in the UK. I appreciate you reaching out, Chad, will PM> -Chris

Hi Chris, hang in there.  I used to get my butt kicked by these things (episodic for 26 years now) until I found this site a few years back. 

Continue to be smart about your medicines and techniques for taming the pain.  No need to melatonin if you are a daytimer.  Redbull not necessary if you can do coffee or sodas.  Works for me and worth a try if the redbull is too much.  I was a 9-10am attack guy, so drank a soda or coffee at 8:45 during the cycle and again in the afternoon when it tried to come back.

Oxygen works for almost everyone, takes some experimentation.  Go big if you need to and use the techniques that people talk about here.

I went to clusterbusters.com and have used their techniques for 2 years.  2 attacks in the last 2 years, not the normal 120.  Check them out and check out their video at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck daddy-o.  No need to suffer other than the occassional sneaker .  Stick with it and you will find your peace. :)

--Shaggy ;)

Hi Cris,  I am also new to this site. I started a cycle after being CH free for 7 years. When I was diagnosed 7 years ago, I went to Jefferson Headache Center in Philly (I live in Chester Co). By the time I got there, I was nearing the end of a 3 month cycle. Gotta write more layer....I'm getting hit hard. Will talk soon. Gidget

Welcome to the board Gidget! Hope to hear more from ya!

Joe

Hi Chris and all,

I'm new here too. - Jill, 43.  I have been an episodic sufferer since my late 20's.  After finally being diagnosed and trying different things I now probably take the highest dose of Verapamil you're allowed everyday and I managed to go 2 years headache-free until last Spring.  That cycle lasted 6 weeks and I have just recently been getting that feeling again that sometimes precedes the start of a cycle for me.  I use Maxalt to halt attacks and most of the time it works for me.  I have never tried Oxygen but have wanted to know how to possibly use that over Maxalt which I have trouble getting sometimes.  My doctor wanted me to try oxygen years ago and I was having insurance issues so I never did.  It's possible that since there has been a change in insurance I might be able to pursue that again.  Since Maxalt/Verapamil together are helpful most of the time though, I have been afraid to try other methods.
Let me just say that "fear and feeling alone in my suffering" was where I spent many years until finding this site.  My husband is the typical doting spouse that I see mentioned here over and over.  But his frustration and sadness over being able to do nothing for me when the attacks hit, makes him fearful and feeling helpless as well.  We've been so glad to read and see things here that we can relate to!

One thing has me concerned.  When I saw the doctor in May, he mentioned to me that when the cycle I was in ended, he wanted me to wait a few months and then start to cut back on the dosage of Verapamil.  It's time to think about it and I am SO SCARED to do that.  I have tried it in the past and it has almost ALWAYS resulted in the immediate start of a new cycle for me.  I don't know what to do.  Has anyone else had success with Verapamil to the point of dependancy like I feel I am?
I read everywhere on these sites about methods that worked for people for years, just plain quitting out!  I am a big scardey cat for sure with this condition and thinking that I won't be able to find relief.  :(
I do have a strong faith and I trust that God will not give me more than I can handle but I worry a lot since the fear of that pain paralyses me at times.

I work fulltime as a teacher and I have children of my own too.  May family has always been supportive.  However, believe it or not, at work I just told my administration and collegues about it for the first time last Spring (since I have had other cycles over the summer months and at times when I couuld manage to get work time off or when the attacks were always hitting at night).  I was afraid to tell them for fear that no one would believe that I am dibilitated when these hit and just saying "You're a wimp for not just taking your Advil and getting back to work."  I work with "regular" headaches all of the time! This site gave me the courage to say that I am not crazy or alone in this and to back up the claims that I have made that this is one of the worst, most dibiltaing conditions I have ever heard mention of. 

I still feel a bit freakish as people stare at me when I try to explain how the headaches work and how they start and stop, come at the same time of day, make my eye and nose run and how they make me a mess of a crazy person who can't function, lay down, talk or be comforted because of the indescribable intensity of the pain. Many people I know are migraine sufferes and while I would not want their condition either, I know that it is not at all the same.  Empathy only exists between those of us who are in that minority of Cluster sufferers.

My husband and I are up for meeting with people who are in the same boat.  I would be grateful, if we do get to meet and if any of you have spouses, to have them come along to share experiences too.

All the best and again I am so thankful to have a place to reach out!
~Jill

Welcome to the board! Do look into the oxygen, even if insurance does not cover it, it's very cheap. I paid out of pocket for years before my insurance would cover it. E Tanks rent for $4-5 a month, refills are under $15, a regulator can be bought off E-bay for $20. So even if they don't cover it, it's cheap. The biggest advantage is it does NOT replace anything you currently use, it does not effect any other med you use, it's just a magic bullet you can use when beasty comes to call. My aborts average 6-8 minutes, that's from attack to completely pain free.

Once you have the oxygen, and see how fast and effective it is, your fear of weaing off the verapamil may be reduced.

Now as to meeting us other "freaks!" ;)...we have a meet and greet in Saint Louis in January...look under the meetings and gatherings section. A bunch of us fly in, hang out for a weekend and talk about CH, what works and doesn't work...at the risk of sounding like a revivalist preacher, it's  a life changing event for most. Most spouses attend too as it's nice for them to have others they can bitch and moan to about what a pain WE can be while in cycle. PLEASE consider attending, I promise you won't regret it.

Joe

Hello Jill,
And Hi everyone, I've been really lazy lately about posting... : )
Jill,
Apparently, I suffered from CH most of my 20's and 30's and was on Verapamil for about 16 years....same dose 240 mgs for forever. Was weaned off in my early 40's and until this year had no dates with the beast. I started having attacks again this year( the worst ever) and did the whole routine...prednisone, depakote, and verapamil 360mg. I was afraid to taper from the prednisone. I told my physician I would do it when Iwas ready. When I felt in control and not so afraid, I successfully tapered off the prednisone and the Depokote. After about 5 months of the 360 Verapamil, I began a very slow taper and am now pain free at 120mg. What helped for me was that I knew I was in control and I could go back to the meds if I needed them. It also helped me to find the strength by just KNOWING what to do and having the drugs available. I would suggest speaking with your physician and coming up with a plan if the taper doesn't work. I have a very compassionate neuro that understands I need a treatment plan to fall back on.  Lowering the Verapamil to 120 has been great! I'm not near as lethargic and I feel good. Best of luck to you! lib