I've been a member/lurker here for 10 yrs now.... generally only seeking the site out once I'm already in cycle and pretty drained/anti-social.

Well, my profile disappeared and I wasn't able to recover it - but I'm back once again.

I've suffered from a cycle that increases in intensity & duration with each one that passes, my only blessing is the fact I only get them every 2 & 1/2 years and this is my 10 yr anniversary to having them.  

I am currently pre-cycle and dreading every hour that passes waiting for what I know will ultimately come and rob me of my life as I know it for the next 2 months.

Last time I had a cycle hit I wasn't working so I was able to suffer unashamed at home but now I'm back to work full time and am trying to make those around me understand what hell is in store for me in the coming weeks.

(sorry for the ramble but my thoughts are fleeting in every direction with no real objective except to let myself go in the one place -this forum- where everyone understands).

During my last cycle I attempted the shroom treatment & am unsure of the success as I think it was taken towards the end of my cycle and I am desperately watching the rains finally fall in Florida in hopes that I may attempt another dose and perhaps ward off the demon.  But in preparation, I have been stock piling my Imitrex over the last 2 yrs as that has been the only thing to offer me any relief.

I have been down most all avenues for the preventatives and have pretty much situated myself in the shadow of my pending fate as nothing has been effective.

Wish me luck!

~ Aimee ~  

Good morning, Aimee.

I'm very much a clockwork episodic as well, so I understand your apprehension about cycles-to-come.  The episodic dance seems to take on an inevitable quality.  Hubris.  

Nevertheless, these things do change over time--I've gone from twice-yearly cycles of six to eight weeks duration to my present situation:  The last three cycles have been three years apart.  

Just consider--nothing is served, and no one (particularly you) benefits from worry over an impending cycle.  It may come tomorrow, it may come in a year, it may never come at all.  Each day without CH is a gift.  Enjoy the day, and let the rest of it go.  If it happens, it happens.

I have no wish to sound patronizing, and that is not my intent--it's simply to say to you, one clockwork episodic to another, that it is not a doom.  It just is.  

If it comes, it comes.  It'll go away again.  Arm yourself, be prepared, but let it go until it actually arrives.  Apprehension will drive you nuts.

All the best,

George    

Hi Amiee,

Welcome back...  Love your writing style.

You're not in cycle yet so this is the time to make sure your arsenal is in order.


NazTee wrote on May 22^nd, 2008 at 8:01pm:

I have been down most all avenues for the preventatives and have pretty much situated myself in the shadow of my pending fate as nothing has been effective.

It sounds like your Imitrex stores are in good shape.  Have you tried Oxygen?  That and Energy Drinks keep my use of Imitrex to an absolute minimum.

It sounds like you know the ropes.  But if you tell us more we may be able to help.

Good luck...

-Dennis-

Well, I just got back from my appt with my Neurogolist in preparation of my coming cycle.

Needless to say, he was less then thrilled when I disclosed to him of my attempts to abort my last cycle with the use of shrooms.

But I'm in the process of obtaining the 02 tank with right flow rate, stocking on the Imitrex shots again & now the doc wants to start trying the preventatives again.... filling the Rx for Verapamil later today.

Can't say I'm too enthusastic about starting this path again - but hey.... gotta do what the doctor orders.

Then again, I've been struck with shadows the past cpl weeks.... and who knows, maybe my cycle has started and this is as bad as it gets???  But, on the flip side, I've not experienced shadows pre-cycle before and each cycle has been getting more & more intense - maybe this one is just gearing up to kick my ass 110%.

Personally I think the worse thing of the entire situation is all the "not knowing" [from causes and cures - to - when and how long]  :-/

*sigh* Hasn't started yet and already soooo tired of it already!

~ Aimee ~
:D poke me in the butt please to distract me from myself! :-?

Crap - edited to add: I mentioned something to the doc about getting vials of Imitrex (thought I read about it once) and he looked at me like I had 4 heads.... anyone know the scoop on that?

"Pain vs. Suffering--research support", a message posted on 1/7/07.

SSRIs used to treat depression have gained a good track record but docs have been long aware of relapses when the med is stopped. Research has lead to a recommendation that the med be continued for up to 18-months after the depression has lifted because this reduces the rate of relapse. Parallel research revealed that this longer use of the meds allows our brain to "rewire" itself leading to better long term outcomes.

The article (available on the OUCH site, last line) "Pain vs. Suffering" is based on cognitive therapy. These forms of counseling/psychotherapy have been strongly supported by good research. Now some evidence is appearing that these therapies act like the SSRIs to stimulate our brains to "rewire", affording protection against strong anxiety conditions. Bottom line: looks like it may be possible to alter brain functioning to build in a permanent reduction of the anxiety which besets many folks with CH. While the gods may not have made a final pronouncement yet, experience with cognitive therapy, so far, really supports its use to treat anxiety & depression. While using "pain vs. suffering" takes time, commitment, and practice, it beats endless use of benzos, etc.

"“My brain is generating another obsessive thought. Don’t I know it is just some garbage thrown up by a faulty circuit?” After 10 weeks of mindfulness- based therapy, 12 out of 18 patients improved significantly. Before-and-after brain scans showed that activity in the orbital frontal cortex, the core of the OCD circuit, had fallen dramatically and in exactly the way that drugs effective against OCD affect the brain. Schwartz called it “self-directed neuroplasticity’ concluding that “the mind can change the brain?’ (TIME, 1/29/07. Major article on the human brain.) (OCD is classified as an anxiety disorder.)

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Sounds like you need a new doc. When I mentioned the possibility of using alternative methods to mine, he was 100% supportive (even though I have yet to do that).

Seems like some docs actually take the Hippocratic oath seriously, while others are more interested in avoiding controversy.

I use the imitrex vials. They come in a package of five vials (6 mg/0.5 mL).  Your doctor should be able to call them into the pharmacy.   Most of the time, a half of a vial does the trick  if I catch it early enough.  The vials are not any cheaper, but it saves the hassle of having to take apart the auto injection.  I pay roughly $80.00 per shot.  My insurance only covers 10 shots per month.  Right now I am in a bad cycle and going through 4-5 shots a day, going broke at the same time.   Good luck to you.  

MPMIII

MPMIII wrote on Jun 2^nd, 2008 at 3:19pm:

My insurance only covers 10 shots per month.

Something I did learn my last cycle was that there is form available from many insurance compies called a "Quantity Limit Override".  Now, they don't advertise it (my pharamcy told me about it) Your doctor and complete the form and send it into your insurance company to "override" the normal/standard number of Rx's authorized for a month.

My insurance company only pays for 4 a month - however - with this form last time I was able to get it as fast as the pharmacy could get it.  And since most Rx's are good for a year - a trick I learned last time even if your cycle is ended... keep filling it and stock up!

~ Aimee ~

Thanks for the tip. I will contact my insurance company tommorow. I wish I could stockpile, but I have yet to have more than a week without an attack.

MPMIII wrote on Jun 2^nd, 2008 at 8:10pm:

Thanks for the tip. I will contact my insurance company tommorow. I wish I could stockpile, but I have yet to have more than a week without an attack.

I may have missed this but are you chronic or episodic?   I am episodic so I get my imitrex script filled every month, when not in cycle, so I have lots when I need it.  Hope this tip might help in the future.  Wishing you pf time soon!

Jeannie

I would have to say chronic.   Diagnosed about two years ago and have only seen one month without attacks(I was on a taper of dexamethaxone sp?).  I currently take 720mg of verapamil, which has cut my attacks considerably, but still have about a five day run to hell every month.

As someone who has only recently found out I'm a CH sufferer, I can't advise anyone on meds etc.

But I can say one thing:

Knowing that the scumbag head-melt is never too far away leaves me in fear. Even the merest twitch in my right eye fills me with dread.

I've only started meds, so I cannot talk about potentially positive outcomes, but CH leaves you afraid of planning ahead. I'm just hoping my holiday later this year doesn't coincide with a cycle.

What I will say is that knowing what you're facing is a good thing. For 4 years I hadn't a clue but I do now - and that was how I found out about clusterheadaches.com.

I've only been on for a few days, but there's a whole lot of goodness here on these pages.

They're lovely people with bad headaches - who understand newcomers like me.

Ian

Just an afterthought.

I feel sorry for you guys in the US who have to pay medical insurance, which limits what you can use.

Here, the NHS means I can get what I need (for a smallish, but increasingly costly payment per script).

But the principle's the same - you'll pay whatever you need to try and get rid of the pain.

During my last cycle, I wished the NHS (National Health Service) would give me a script to buy me a chainsaw to hack off my head.

Ian