Hi All,

I have been having cluster headaches for the last 9 years.  They started at age 30 with a severe one sided headache that included, drooped eyelid, lacrimation, and nasal congestion only on the right side.  I was misdiagnosed with sinus problems for 2 years and suffered immensely during this time, taking everything from nasal steroids to percoset in an attempt to control the pain.  After 2 sinus surgeries and no real change, I was finally diagnosed with CH and started on Verapamil and Prednisone as well as percoset for breakthrough management.  I then went from headache specialist to specialist, pain management, you name it, and tried every drug/combination therapy out there, with little or no help.  Topamax worked well, but I developed speech motor problems at the doses needed to control my headaches.  I did get some relief by injecting Toredol 30mg during an attack, but it cannot be taken too often and as a result is not a good solution.  I was able to survive on Verapamil, Nuerontin and percoset for almost 5 years before the disease destroyed my job and got much worse.  At that time I ended up on a multiyear course of various narcotic medications, from Hydromorphone, to Fentanil patches, to Methadone.  Finally, after taking large quantities of Methadone and not getting relief, I decided to check myself into Johns Hopkins hospital, which has a special pain center for all kinds of unresolved pain.  The experience was terrrible, even brutal at times, but the outcome was better than I could have hoped for.  During my 30 days in the hospital, I became narcotic free, and broke my chronic CH cycle.  For about 2-3 weeks after coming home, I was almost headache free, and nothing like the intense pain of CH.  However, slowly and steadily, the CH pain started to come back, once a week, then twice, then daily, then twice daily.  I am now back with what appears like Episodic CH and getting 2 attacks per day in the 6-7 range.  I still take Verapamil, and treat my headaches with Excedrin.  I simply refuse to take narcotics.  Unfortunately, at this point, my pain specialist is of the opinion that my situation is more Psychological than physical and this makes me frustrated.  As of my last meeting, last week, he is suggesting Cognitive Behavioral Therapy, to me, its rediculous.  But since I have tried so many other treatments with limited or no success, I am willing to try anything.  Anyone else have this problem?  If so, how do you deal with it.  I am very frustrated and angry about my current relapse.

Thanks,

Jason

Oxygen.

    Potter

Potter wrote on Jan 3^rd, 2010 at 5:23pm:

Oxygen.     Potter

Yep.

Marc

newjerseyjsb wrote on Jan 3^rd, 2010 at 4:39pm:

Hi All,   Unfortunately, at this point, my pain specialist is of the opinion that my situation is more Psychological than physical and this makes me frustrated.  As of my last meeting, last week, he is suggesting Cognitive Behavioral Therapy, to me, its rediculous.

I think I'd have to be givin that doc a dose of Cognitive Behavioral Therapy via a swift kick in the ass and then I'd run like hell to find me a new doc!

DD

I second and third the O2.  You don't mention what your dosage of verapamil was and you don't say if you've tried a prednisone taper to break the cycle.  And as a lot here would tell you, a *headache* specialist deosn't always mean they have good (or up to date) experience.

CBT therapy is good with *chronic* pain, not that good with ch.  If one has an injury that causes chronic pain or some type of illness that causes chronic pain, CBT can be a godsend.

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This O2 therapy [IMPORTANT NOTE:This is more effective than the old school weak O2 therapy that a headache specialist might prescribe]:

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And imitrex injections for when the O2 isn't available (if you haven't tried them yet. I suppose you probably have).

Now that you've learned the hard way that doctors are generally cimminally negligent idiots when it comes to CH, I'd strongly recommend doing a lot of research and question asking right here, making that your focus.

I'm not the only one who has found tremendous relief by getting educated here.

Sorry you got sent down the pain med aisle........I don't need to tell you anything about the pitfalls there. Damned sorry you went through that, wouldn't wish that on anybody.

31 year episodic sufferer here, and yeah, Oxygen! Silly as it sounds, you'll quickly find out why it echoes on the board so much. I feel that familiar strain in the neck and behind the eye, that "oh SH*&" here it comes feeling, I fire off my 02 tank, and 10 minutes later I'm completely pain free. PLEASE, read the oxygen info link on the left and give it a shot, I know I sound like an info mercial but it's been a life changing event for so damn many people .

Glad you found us, now get to the oxygen before they dupe you into the pain med route again. Welcome home brudder.

Joe

Thank you all for your comments and suggestions.  I had a nice talk with my current doctor today, and after asking him what his plan was to deal with the acute pain during my "Psychological" treatment, he suggested finally that I should consult another Nuerologist and find an alternative therapy.  Frankly, I think he is a moron, he was the one who stuck me with all the pain meds and increased my dosages until I could not take it anymore and found a different solution.  So, I have decided to go back to the Jefferson Headache Center in Philadelphia and look at some of the Clinical trials they are running.  I have been there before and have seen the director of the institute, he is arrogant but knowledgeable and at this point, what have I got to lose. 

As for the Verapamil, I take 240ER twice daily and have tried O2 many times, I even have a concentrator at home, but have had limited success with it.

Regarding Imitrex, I was on various triptans but did not succeed with them.  I have been refractory to most treatments, but am always looking for a solution.

I'll keep this updated. 

Thanks,

Jason

newjerseyjsb wrote on Jan 4^th, 2010 at 1:27pm:

Thank you all for your comments and suggestions.  I had a nice talk with my current doctor today, and after asking him what his plan was to deal with the acute pain during my "Psychological" treatment, he suggested finally that I should consult another Nuerologist and find an alternative therapy.  Frankly, I think he is a moron, he was the one who stuck me with all the pain meds and increased my dosages until I could not take it anymore and found a different solution.  So, I have decided to go back to the Jefferson Headache Center in Philadelphia and look at some of the Clinical trials they are running.  I have been there before and have seen the director of the institute, he is arrogant but knowledgeable and at this point, what have I got to lose.  As for the Verapamil, I take 240ER twice daily and have tried O2 many times, I even have a concentrator at home, but have had limited success with it. Regarding Imitrex, I was on various triptans but did not succeed with them.  I have been refractory to most treatments, but am always looking for a solution. I'll keep this updated.  Thanks, Jason

Oxygen at a high flow rate works.  The concentrator is crap.

              Potter

Jason, welcome!

That concentrator might be your problem.  Most say the O2 works best for them at a HIGH flow rate, like 15 LPM or higher.  Those conentrators are around 8 LPM I think.  Think about getting prescribed a tank (various sizes are explained on this site) with a high flow regulator and non-rebreather mask.

And concentrator O₂ reaches about 90% pure at best.

Hi Jason,

It's sad to read a story so dishearteningly similar to my son's. Before a chance reading of an article in the journal Neurology, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, my then 24-year-old son was near suicide and I was at my wit's end.

I don't intend to recommend this approach but to offer it as an alternative which has been effective for many.

Please also familiarize yourself with the sister site to this one, START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You are not alone.

All the best,

Mike and Ron

Yeah the biggest keys for 02 working are all contradicted by concentrators.

1: Time is of the essence, you must get on the 02 as soon as you feel the attack starting. A delay of 3-4 minutes for me can double the abort time. The time it took a concentrator to warm up I'd already be at a 5 or 6 and the 02 wouldn't help me much.

2: Your lungs must get 100% 02, no outside air, no exhaled air. That's why we use Non Re Breather Masks at high flow rates, 15 LPM and higher, or like myself demand valve masks. Like Brew said a concentrator will generally go 90% or so at best and just can't deliver the volume we need. That's why the nasal canulas and re breather masks are totally worthless.

Get an E-Tank, high flow regulator and a non re breather mask. Praying it proves the miracle for you it's been for myself and so many others.

Joe

Hey Jason, I think the best course of action is to follow your Dr's advice and find a new neurologist.  Having the right Dr can make all the difference in the world.  I'm sure most everyone here can relate to visiting a Dr for the first time and having to educate them on CH's and treatments. 

If you've found anything that has worked try to stick with it - insist on it to your Dr. 

Good luck.

It not so much a matter of finding a doctor who "knows everything" about CH. It's about finding one who listens and is willing to learn.

The best doctors will acknowledge that YOU are the expert.