Hey CHS,
You've posted two very powerful videos on YouTube. Good on you for taking the initiative to get your story out about cluster headaches.
Now I'm going to talk turkey with you. There is no need to continue down your present path or to continue suffering like your videos illustrate.
I've been in your shoes as both an episodic and chronic CH'er for 16 years and suffered for nearly 5 years before these terrible headaches were correctly diagnosed, so I know how helpless you're feeling at times.
From what I've seen so far, the beast has you by the tender vittles and is jerking you around by the eyeball. It's in complete control of your life and you have none. You are the only person who can take control of the situation… You just need to know what to do.
Let me start with the disclaimer that I'm not a doctor and that you need to discuss the rest of this post with your physician.
Having said that, I've worked with hundreds of CH'ers like you over the last 6 years and have a better than average success rate in helping them gain control over the beast and in the process, regain a quality of life they didn't think possible. No one can stop cluster headaches from occurring, but learning how to manage them will put a new light in your life.
I don’t know your CH history, but if your videos and your explanations are any indication, it appears you've never been prescribed an effective means of intervention.
If that's the case, take a look at the following link as a starting point. It's the National Guideline Clearinghouse site that lists the standards of care in treating most disorders. This particular link presents the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias. Print the pages of this link and take them with you for your next appointment. The operable part of this link is illustrated in the table below:
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If you've not tried the acute and preventative treatments in the cluster headache column marked with an "(A)" you've got a starting point. These recommendations were developed by a European Federation of Neurological Societies task force of neurologists who number among the brightest minds in the field of neurology specializing in treatment of patients suffering from the cluster headache disorder. They see more cluster headache sufferers in a week than most neurologists see in an entire career.
If on the other hand you've already been prescribed and tried a prednisone taper and titrated up on verapamil while on that taper or had oxygen therapy prescribed as an abortive at a minimum flow rate of 15 liters/ minute with a non-rebreathing oxygen mask along with sumatriptan succinate nasal spray or injections as an escape abortive and you still have no control over the beast, there are a couple more things to try.
The first is oxygen therapy at flow rates that support hyperventilation. The minimum flow rate for this method of oxygen therapy is 25 liters/minute and most of us who use this method of oxygen therapy use much higher flow rates or an oxygen demand valve. We've found this method of oxygen therapy far more effective than the typical prescription at flow rates of 12 to 15 liters/minute. Shoot me a PM an email, or give me a call on Skype and I'll send you some material on this method of oxygen therapy.
Finally, we've recently found that a regimen of 3000mg Omega 3 Fish Oil, 10,000I.U. vitamin D3, and two of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc is showing great promise in reducing both the frequency and severity of CH. To date, better than 90% of the CH'ers who are using this regimen have experienced a marked reduction in both the frequency and severity of their CH or… they've gone into a PF remission.
If you compare the CH response to this regimen with verapamil that’s typically 50% effective, you might be tempted to ask… Why take a more invasive medication with more potentially harmful side effects when an over the counter regimen of vitamins and minerals does a better job with no side effects?
Take a look at the following link titled "123 Days PF and I Think I know Why" and be sure to read all seven pages... In particular, read posts from CH'ers who are experiencing a marked reduction in the frequency and severity of their CH.
Again, please discuss the contents of this post with your physician… The ball is in your court.
Take care,
V/R, Batch