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How old is too old for clusters?

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I got clusters at age 55 which is when most patients seem to start losing them. This month I'll be 72 and STILL have them.  I asked my neuro, who's a cluster specialist why I still had them at my age. All he could answer is, "What can I say, you still have them." His dad, who was a pioneer in cluster medicine also had clusters, so I asked him about his dad's experience. His dad got them in his 20's and they burned themselves out at age 64.

So my question is, am I the oldest clusterhead? Are there any others out there over say age 65 who are still getting hammered by the Beast? And are those approaching age 65 aware that Medicare refuses to reimburse oxygen for CH on the grounds of "not medically necessary" and their belief that O2 is a deadly substance? Are they aware seniors are advised against the use of Imitrex? How does Medicare which was brought into existence to care for the health of America's senior citizens get off with adopting a pro-suicide policy for clusterheads? This wouldn't have anything to do with Glaxxo, the multi-billion dollar owner of Imitrex not wishing to have their $30 drug competing head to head with oxygen, would it?

Having said all this, I must add that last Fall I had the worst cluster ever which finally prompted me to try the psilocybin cure. My last use of psychedelics was a disastrous nightmare acid trip in 1969, so I approached mushrooms with the greatest of caution. Every Sunday for five weeks I took a dose of psilo starting with a tiny dose and ending at 1.7 grams. My CH seemed to decline at the same rate as the doses grew. Since then I've had several Kip 5-6 headaches easily knocked out by O2, and now I seem to be down to just shadows. Of course, I have no way of knowing if I'm in a natural remission, or if the CH have finally burned themselves out with age, or if the psilo knocked them out for good. I'll make a full report elsewhere on my experience last fall with the psilo and two other rare headaches that converged on me at the same time.

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am I the oldest clusterhead?

Nope.

Are there any others out there over say age 65 who are still getting hammered by the Beast?

Yep.

Congrats on knocking that beast down with the Vit M nofear!  [smiley=thumbup.gif]

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nofear,

You have me beat by a few years, but mine got really bad after 60. I use welding O2. Dr. won't even prescribe it for me he is so scared of it, AT MY AGE!!!!!! >:(

The world is full of idiots and I have met my share. :)

spiny

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I concur with your assessment of our healthcare system.  It's a bit out of whack...  I'm no expert but your mention of $30 imitrex might be a little off.  When I got the stuff as part of my medical insurance I had to pay a $50 copay.  This is when my copay was supposed to be $25.

I use welding O2. Dr. won't even prescribe it for me he is so scared of it, AT MY AGE!!!!!! 

I'm not so sure anymore what an individual hit of Imitrex costs either. Last Fall I purchased 90 units through my union health plan for a $50 copay, but they were the new generic version. And guess who makes the generic version of Glaxxo's Imitrex? Surprise -- Glaxxo makes it. There's no question Medicare is heavily infiltrated by Big Pharma which gives millions to Congress in return for getting billions back from Congress by doing their bidding at the people's expense. It's called elder abuse. An even worse practice by Big Pharma comes when their 17 year patent monopoly expires, and they no longer control the patent. When another company decides to make a cheaper generic version, the original patent holder will often approach the generic company and offer hefty payments running into the millions if they agree not to make the generic version.  Glaxxo is competing in price with itself which of course is no competition at all. Generic Imitrex is now called simply Sumatriptan.

Another trick Big Pharma plays on us is to set a way too early expiration date for their meds in hopes patients will throw away unused expired meds and buy more to replace them. Drug expiration dates are based on profit and politics rather than science. If you use a mail order house for meds, any prescriptions filled in New Jersey are marked as expiring one year from the date of being filled per a state law passed no doubt in exchange for campaign contributions from Big Pharma. Having on occasion ended up with a lot of outdated Imitrex, I have used it as much as five years after expiration and it had not lost a bit of it's potency.

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Those people are making BIG $$$$ off Clusters for sure...  O2 is maybe $3 per attack instead of $60 to $125 per shot for imitrex... 

It's outrageous that any American should have to substitute industrial gas for medical oxygen, and that brings up all the restrictive oxygen rules that make us jump through hoops. In the summers I travel as much as 10,000 miles around the West researching and photographing for a book. Last fall I started out with 9 E-tanks in the trunk which normally would have been way more than enough. But on the advice of my neuro I had just dumped the lithium and verpamil I had been taking for years. And in just a few days of travel I got slammed by the worst cluster ever. By the time I got to Utah, I began to wonder if my O2 would last and decided to find a way to refill. I phoned an O2 retailer who said I would need a prescription. No problem I had one that was only a month or two old from my neuro. But it turns out, oxygen prescriptions expire in 45 days and this one was two months old. Next I tried AirGas which seems to control medical and industrial gas production just about everywhere. But they told me they were forbidden by law to dispense it. Next I was in Wyoming and tried a retailer. If I got a brand new prescription they would be happy to sell me as many tanks as I wanted, but they could not refill my empty rental tanks from California because that was illegal, nor when I got home could California refill my Wyoming tanks, so I'd be stuck with worthless tanks that cost around $70 to buy. Or I could rent them and return the empties for credit, but I rarely stay in the same town more than one night and never retrace my steps.

Of course, it's the easiest thing in the world to take a year-old Vicodin prescription to a drug store, get it filled, and stay high for a week before you overdose and die. You can even get a prescription for cocaine and have it filled if you can find a pharmacy that stocks it. But they surround oxygen with so many rules, you'd think it was worse than plutonium. But maybe there's a workaround. Isn't there some routine medical condition other than CH that requires O2? If so, I would think the solution to securing a prescription and oxygen wherever you go should be obvious.

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Pharma: In addition to what you stated, they will find and off label a new use for the drug. When that shows promise, they will get it on label and now the patent does not run out on schedule because it can now be used for xxxxxxx! >:(

Rented tanks have to be filled by the operation they are rented from. Purchased tanks can be filled by others.

I just gave up on the hassle of an O2 script. I use it for welding too, so I will always have it on site. Besides, my guy will deliver on Sunday if I run out while in cycle! :)

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In california where I live my health insurance is outrageous as with most people in the U.S. probably. Last time I went to get a shot kit (auto injector kit) the pharmacy told me is would cost me 749.00 because my insurance company denied it as it is in a different class of drugs like Jeff said.

My Doc had to get on the phone with them they then had to do a review of the need for it and why so many were needed (he tried to give me 10 refills) - I had to stay on top of the insurance company daily and the Doc had to write up another explanation on the need for it - they then said after 4 days that it was approved and when I went to pick it up they charged me 92.00 because they said there was a special deductible I had to meet first. I did go to a website and got some coupons for it - but I was told I couldnt use them because I was paying with cash and had insurance lol...

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Bad News ......... I too found the Beast in my mid-fifties. 

                        Living with this forever?  :-/

Very Sad .........  Our Healthcare System.  At least I have good insurance that

                        covers everything (O2 and Imitrex).  I'd be a wreck if I was

                        treated like some of you folks.  :-[

Real Bummer ..... Age 101, really?  We gotta get her to a Convention!  :o

Totally Sux ....... Working with AirGas.  They cut me off O2 when it became a

                        Scheduled Drug in California.  I really had to scrape to find

                        someone else who would fill my personal tank.  I did and they

                        still required a script (which I had).  :'(

Godawful .......... Big Pharma.  No more comment needed.  >:(

Absolutely Virtuous .... 2Funguys, ClusterBusters and my support group.  ;)

One thing learned, is keep trying to find what works for you, then push like heck to get results.

weatherman

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Check this out - this guy never had a cluster and started getting them at 78 years old

Nitrates are known to precipitate headache. The case study is that of a 78 year old man who developed cluster headache from isosorbide mononitrate. He had no previous history of headache, and had been on the medication for 11 years. When the medication was discontinued, the headaches were alleviated, and the headaches began again when the medication was reinstituted. The headache was a unilateral, intense, severe pain lasting approximately 3 hours, with associated lacrimation. MRI did reveal a pituitary macroadenoma, and MRA did reveal an occlusion of the contralateral internal carotid artery.

This case is unusual in that the form of headache was cluster, in a patient without a previous history of headache. Medication as a precipitating factor for headache should be considered in new onset headaches, particularly in the elderly.

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Good news, bad news about the age thing:

It seems like there are a couple of patterns of etiology. For me, white male, onset at 22 years old, 3-4 years before diagnosis, episodic (every two years), some help with conventional meds (Verap), great experience with O2 as an abortive. Pretty typical, I think. I am 51 years old and have shifted to chronic daily shadows. Only a Kip2, but almost every day. Like that old feeling of suddenly realizing you HAVE to get to the Oxygen, but just as you expect it to explode in intensity, it simply does not. Watery eye and nasal congestion on that side.

Interestingly, my 93 year old uncle through marriage is a Clusterhead. I only found this out almost exactly a year ago at my Dad's funeral. Sam's kid was talking about him getting these horrible headaches where he isolates, rolls around the floor, breaks things, and has a huge Oxygen tank in the bedroom...Yep, that sounds about right. I am going to try to ask him about his history. Let me know if you have specific questions.

See you in the Windy City

Larry

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Of course, it's the easiest thing in the world to take a year-old Vicodin prescription to a drug store, get it filled, and stay high for a week before you overdose and die. You can even get a prescription for cocaine and have it filled if you can find a pharmacy that stocks it. But they surround oxygen with so many rules, you'd think it was worse than plutonium.

You got that right. It's totally ridiculous. I wonder if the people sometimes stop and think about what they are saying... When I gave birth to my first child, I was hit with a full blown cycle a few hours after birth (never had cycles like the ones after I gave birth, they were HORRIBLE). I was still in the hospital, where I was prescribed O2 for clusters in the past, and it's written right there in my file. But when I asked for O2, they treated me like I was this drug addict asking for a fix. They suggested they find a doctor who could prescribe a narcotic for me to pass the night until my own doctor was in to see me, but in no way would they let me use O2. They only gave in after I made a scene in the hallway, and threatened to take my baby and leave on the spot because I had my own O2 at home.

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In california where I live my health insurance is outrageous as with most people in the U.S. probably. Last time I went to get a shot kit (auto injector kit) the pharmacy told me is would cost me 749.00 because my insurance company denied it as it is in a different class of drugs like Jeff said.

That is crazy. I'm in Quebec, and had to purchase Imitrex in the past at a time where I had no insurance. I paid full price, and it was only 100$ CDN for a set of 2 shots. And I thought that was a lot...

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They suggested they find a doctor who could prescribe a narcotic for me to pass the night until my own doctor was in to see me, but in no way would they let me use O2. They only gave in after I made a scene in the hallway, and threatened to take my baby and leave on the spot because I had my own O2 at home.

Un-freaking-believable. >:( If anyone has ever been justified in making a scene, it was you at that moment.  :o

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I had a 3 day stay in the hospital 2 years ago for an unrelated medical condition.

My doctor (who diagnosed me with CH, and sent me for a CAT scan that day) had me set up with O2 at 20 lpm any time I needed it in my room.  Never used it, but I would have "ranted the hallways" if the Beast showed up and I couldn't have aborted it.  I absolutely cannot imagine staying in a hospital and being denied something that they hook everyone that walks through the door into.  That is just wrong!

I have Kaiser Insurance in California and all my O2 is delivered free by APRIA.   My Imitrex is $5 for a set of two shots.  All covered under basic health care costs, which are about $200/mo for both wife and I.

Sooner or later the entire medical profession is going to catch on with what it takes to deal with these headaches.  We really ask for so little sometimes.  Just leave me alone with gosh darn oxygen!  Just need more doctors (and especially neuro's) to come down with this affliction........Oh, they'll learn quickly.

There is plenty of deliberate and intended suffering at the hands of mankind in the world, why restrict help that is readily available, easy to use and non-threatening to the patient?  If only medicine wasn't such a business and doctors were more human.  End of Rant.  I know I could have just as easily written any of these tales.

weatherman

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I am 68 and started getting CH after I got out of the Navy when I was around 22. Back then not much was known about them. Found a doctor in Boston who was aware of them and since started taking pharmaceuticals with limited or no success. Since I just started my annual CH I get back on the forums to see what is going on and as usual not much.  Got my stash of Imitrex, some of which is over two years old but still works and just got some O2 which my gap insurance pays 80%. Since I am in the GOLDEN YEARS I was picturing me, not to far in the future, with my walker having an episode and scrambling for all this stuff that is needed, towels, kleenex, O2, Imitrex as I crawl to the crapper. Not a pretty picture.

Hope I will grow out of them soon. Been to long.

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...started taking pharmaceuticals with limited or no success. Since I just started my annual CH I get back on the forums to see what is going on and as usual not much.

That's a very smart move to be checking the forums IMO. I guess it depends on one's perspective, but it seems to me there's actually a LOT going on lately in the realm of CH prevention. I define "a lot" as CH'ers (especially episodics) being able to completely prevent entire cycles these days. I know that's what info gathering at the forums has done for me.

A couple of us expounded on that in response to your post at the imitrex thread here:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1363108766

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Wouldn't be surprised if the demon attacked even after death.

That would explain the head banging noises reported to have been heard coming from inside the coffins of deceased CH'ers.

Sorry. Maybe I took that attempt at a bit o' CH gallows humor a little too far.  :o:D:o:D

You started it MoxieGirl.  ;)

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