I've never seen U.S. cost data so this is only a curiosity for us.
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Schmerz. 2010 May 12. [Epub ahead of print]

[Chronic cluster headache : How much does treatment cost?]
[Article in German]

Jürgens TP, May A.

Institut für Systemische Neurowissenschaften und Kopfschmerzambulanz der Neurologischen Klinik, Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 52, 20246, Hamburg, Deutschland.

Abstract
Chronic cluster headache is a devastating pain condition where invasive methods such as occipital or deep brain stimulation are discussed when the condition is medically intractable. These methods are expensive but may well be economically reasonable if medications such as triptans can be reduced. However, little is known about how much a cluster headache costs, even if only primary parameters such as costs of medication, doctors and diagnostics are considered. We describe a patient with a secondary chronic cluster headache who over the course of 10 years prospectively recorded every single attack as well as all expenses for his condition. In these 10 years he suffered a total of 5,447 attacks and the overall medical expenses amounted to 60,667 EUR [$75,000 US in 6/10], the predominant part of which was caused by costs due to the cluster headache itself (47,030 EUR, 77.5% [58,750 US in 6/10]). The inhalation of oxygen accounted for the lion's share.

PMID: 20458501

Interesting.

Over a 10 years time span I would have suffered over 18,000 serious attacks and many multiples of silents and ones that were bearable in addition during the slow times.

I would venture to say, with some reasonable calculations, that in the first 20 years of CH under direct medical care and prescriptions I spent well over 250k not including the multiple failed attempts with oxygen. If I had gone through the cancelled surgeries that number would have probably well exceeded 500k. Lost productivity cost, who knows? All that care,money and drugs and no abatement of CH.

The next 10 years unmedicated with no doctors involved cost cannot be calculated. but lost productivity was huge.

This I know isnt for everyone.
The last 5 years treating with only seeds and a serious 90%+ reduction in CH with a 4 year semi remission, costs have not exceeded 400.00 or averaged to 80.00 per year.
plus tax and shipping.

I know durring my first year of diagnosed ch my 20% copay for drugs and office visits left me with an amount of around $23,000.  The time missed from work was way more than any company should have allowed but I had lots of vacation time, and unlimited sick time. 

Now I'm well and truly depressed....sigh.

A young man hit with devastating, chronic CH in his late teens who loses virtually all his friends and opportunities for romance, the chance to get a higher education along with those of his age group, the social life so important during those years and the chance to see unlimited opportunities rolling out in front of him; his remaining human contacts with family and the medical community distorted in both directions by addictions to narcotics and other mind-numbing agents like lithium and the anti-depressants. Life reduced to a handful of pills followed by broken sleep, tasteless meals and the occasional TV show. Nature no more than what he may or may not see passing by a window. His empty, meaningless life focused by a pain unimaginable in intensity by any who haven't experienced it. This huge chunk of time ripped from the very center of those best years of our lives with no prospect of ever regaining even a little of it. If this young man finds himself in the best of all possible worlds and the burden of CH is removed, his joy is tempered by the ignorance of those who employ, educate and befriend him; something like re-entering society after a stretch in prison. Not quite what a parent envisions for his child. And he's one of the lucky ones; incredibly lucky by anyone's standards. The financial cost is nothing.

Thanks for your heart, Joe. I don't think I'm too off-base in thanking you from all of us. What a gift you have!

bonkers wrote on Jun 21^st, 2010 at 2:27pm:


Ron through your eyes the story is incredible and painfull. I have also seen the Joy you share when small steps have been achieved.
So many here know some of what you relate in our own lives. What most of us will never know is the strength, the commitment and the sorrow that is required to stand watch over one of our own as you have done for so long a time.
There is no money that could cover that cost, There is no parent that would want to watch this take place.

The beauty in the story is YOU. Stay strong.

Happy belated fathers day.

Kind, warm words. Thanks guys.