I have been suffering from SEVERE Chronic Cluster Headaches now for over 2 years, with no break. I get 7 - 8 headaches a day. I just finished having an episode that lasted nearly 2 hours. I was just released from a 5 day hospital stay for a DHE treatment, prescribed by Dr. Peter Goadsby, the treatment didn't work.
I am a Spec. Ed. teacher and professor and my team of doctors have finally insisted I take a medical leave of absence so they can do further medical trials.
The pain I experience on a daily basis is so debilitating, and unbearable, it makes want to die. My life has been reduced to weekly Dr. visits, ERs, O2, pain medication, and the fear of leaving my home. I sit and rock and cry like an idiot for hours a day. My career, relationship and fiances are being destroyed! I'm not sure how much more of this I can take! I have lost my lust and purpose for life, and feel like I'm at the end of the road. I've had every procedure in the book and NOTHING helps! I wonder, will I ever get back to life as I once knew it? This all makes me extremely sad and depressed, I just don't know what to do anymore.

Please go to this link:

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There you will read how to begin to take your life back. It will take a lot of due diligence on your part, and things may get worse before they get better. But I believe it is the best chance for you to get your life back.

I too am a special ed teacher ( though I haven't taught in a school in several years) and a Board Certified Behavior Analyst. I'm also a lecturer.
I'm a part of a team that just opened a diagnostic and treatment center for individuals with autism and related disorders.
As many here can empathize with you regarding the pain and effects of it on our lives, I too can empathize with how it COULD interfere with you professionally.
I've been in this current cycle since March 2004 which means 7 years now chronic. I've also been completely med free with exception of the once in a blue moon emergency injection or pop of zyprexa since January '06 after developing Lithium toxicity. That was the final straw.
I went through the DHE protocol in 2007 after being limited to 2 broken hours of sleep for a few months. that didn't break my cluster cycle but did get me sleeping better again.

In no way would I personally ever consider surgery!!!!
I will also not go on prophylactic meds again but that's my choice. I decided that my whits were way too valuable and the side effects were horrible for me where I was dumb as rock on everything I took with exception to the verapamil/lithium combo which did help but like I mentioned before I developed toxicity.

I cope with OXYGEN and a positive mental attitude. If I do go through extended periods where the nights become too much to bare, I will then start a high dose of melatonin which temds to break my non-sleep cycles as it does function as a preventative for nocturnal hits.

The most interfering part of CH in my opinion is the anxiety and potential depression that comes about as we are in pain and many a time extremely sleep deprived.
If you can deal with that then life will be ok.

You can do it!!!!
YOU CAN DO IT!!!!!!

BREATHE stick around and don't hesitate to reach out. We're here!
I'm here!

Best,

Eric

edited for shitty grammar

Hi Eric,
Thank you so much for such valuable information! I really appreciate it.
Such a small world. In addition to teaching Spec. Ed. in the public school system, I am a professor at Brandman University, where I teach graduate level courses to Spec. Ed. teachers working on either their Masters Degree or their Autism Certification. I am an ASD behavior Specialist as well. This week will start my extended medical leave from the classroom. My medical team is of the opinion, perhaps my career may look a bit different in my future. Teaching more at the University, since we have a mixed model of on-line and face to face meetings, along with office hours. This would be an extremely flexible schedule, without the pressure of having to be in the classroom and at school 8-9 hours/day. I also teach figure skating, which I have not been able to do at all this year, but once again doctors think without the added stress of having to appear at school each day, and pretend I am 100% fit for duty, I would be able to begin to teach figure skating again, my true love.
I've already had brain surgery once for 2 abnormalities, so neither myself or my Primary care Physician would consider another brain surgery under any circumstances. It's funny in a way, when I'm out of pain, like right now, I feel like I could do anything at all, and when I get hit with a C/A my world crumbles into little pieces.
I'm going to take some of your advice, as I am open to most any thing that will help.
On a side note, where in N.Y. do you live? I was born in Brooklyn. Finally, how did you get on the lecture circuit, I have been thinking that may be something I would like to do.
Once again, thank you for your response and I welcome any other advice or thoughts you may have.
Richard

Richard, do you have a good neuro here in San Diego? O2 is what my husband uses also, he can abort a CH in about 10 minutes. He is episodic, and uses lithium when on cycle as a prevent. He had a 30-year law enforcement career here while living with CH cycles 1-2x per year. O2 was his savior.  He also uses supplements (magensium etc) as mentioned on other threads by Batch.

Christy - San Diego

I'll send u a PM later...been a daddy day so I'm a bit pooped but have a lot to chat with ya about.

Welcome aboard new brother!

E

I'm going to echo what Brew said about clusterbusters.

Many chronics have gone to the message board there START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE only to find other long time chronics for whom the meds had failed, and who were at the end of the line, only to have found relief from "busting"

Pertinent links IMO would be the Newsweek article on the subject of CH and busting: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

A video talk on the subject by one of our fellow CH'ers: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And some nuts and bolts "how to" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

One more thing - when folks here speak of O2, they're not talking about low flow, rebreather O2 use, as is still commonly prescribed by doctors. The oxygen info link to the left describes what I call the power user method that is much more effective.