Care to describe your headaches.
Frequencies, time duration, how they begin, how often you have an attack in say 24 hours, do they wake you at night, can you remain still and calm, where is the pain centralized, is the pain in the sinus above the eye, the nose??? In or behind the eye, the temple area, cheekbone????
Maybe these answers will help us help you if you desire.

Doctors can be wrong.
Many here though not doctors are very well educated on clusters.

Unfortunately the complete cause of cluster headaches IS not yet known but the answers are getting clearer every day.

There are some similar headaches that begin in the sinuses, clusters are not one of them.

Oxygen if it helps is the second least expensive abortive out there for CH after RC seeds.

Your frustration comes through loud and clear, constant, debilitating pain will do that. The fu%$ing things hurt, a lot. 

Bob has given you some great advice, we all want to find a CURE for these things, find some quick surgery or that magic pill to halt attacks forever, but until we find the "cure", please take the time to learn about the different meds available to manage them. You shouldn't be hurting as much as it sounds like you are.

Oxygen can be inexpensive even if you have no coverage for it. Before I got Kaiser to pick up the bill I was out of pocketing it for years. The tanks were $4.50 a month for rental, and $11.00 for each refill. For the cost of dinner and a movie I'd have a months supply.

Hope we can help you, sounds like your hanging on by a thread. Honest, we all understand your pain, we've all been where you are right now, and we're always here for you.

Guiseppi

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:


   Oxygen.  It's not a suggestion.

            Potter

My headaches also last 24/7. Going on 3 months now. I have a neuro and a pain management specialist. They both think that I might have a dual diagnosis of clusters and nerve damage. PM me if you would like more detailed info.


Hang in there.

Hi Kimberly Ann,

I posted a note about this a year or so ago, but thought I should share it with you.  I have had GREAT success with the following regimen:  

Kudzu - 1000 mg, 2x per day (morning & night)  
Magnesium - 250 mg, 2x per day (morning & night)  
St. John's Wort - 300 mg, 2x per day (morning & night)  
Skullcap - 425 mg at bedtime  
Melatonin - 10 mg at bedtime  

A little background:  I'm a 51 y/o male, 215 lbs, episodic CH since 1992.  I was in complete remission for about six years until about this time last year, when the Beast came back.  I decided to try 'alternative' treatment, since I've never had very good luck with doctors for much of anything.  I also would rather avoid the potentially severe and/or permanent side effects that most of the pharmaceutical treatments seem to offer!  I would have tried clusterbusters in a heartbeat, but I have a very real concern about potential legal issues here in Louisiana.  This is not the most progressive state in the U.S.!

All of my 'ingredients' are pretty benign, available OTC, and cheap.  Total cost is well under a buck a day.  Most importantly, they work - at least for me.  I have stopped the Beast in its tracks!  Here's what happened:

I came up with the regimen after reading a whole lot about what different people seemed to think worked well for them, as well as a good bit of the medical literature.  I went out and bought all of the supplements from either Wal-Mart, GNC, or the local health food store.  I started taking them, in the dosages described above, about a week into that cycle last fall.  From Day One, my attacks almost stopped.  I had a couple of K3's after a few days, and then it was over.  No more attacks at all.  I kept taking the supplements for a week or so, just out of caution (fear?), then stopped altogether.  About six months later, a cycle tried to start again - I had a single HA, around a K6 or so.  I restarted my regimen that day, continued it for a week or so, and never had another hit.  After 16 years of CH, I cried when I finally felt sure enough to tell my wife, "I beat them!  It works!  I've beat the f***ing headaches!!!"

As desperate as we are to find something to help with CH, I think most sufferers have become a little jaded, and are unwilling to try something new, just out of fear that it will not work.  No guarantees that it'll work for everybody, of course, but just as a side note, no one has EVER told me that they tried this routine and had it fail.  It' simple, legal, safe, and cheap.  Try it.  YMMV, but it's damn sure worth a try!  The only caveat of which I'm aware is that I've heard that Kudzu may interfere with some of the pharmaceutical meds, so check with your doc if you're still on anything.

I would REALLY appreciate any feedback, pro or con, from anyone who tries this.  Good luck and PFDAN to all!

Regards,
Jim

ClusterChuck wrote on Jul 29^th, 2008 at 9:07pm:

KimberlyAnn - sending my support and a hug. I heartily agree with the oxygen suggestion. It works like a charm for most of us who've tried it. Personally I got a lot of relief from Topamax which, while not cheap and fraught with side effects, definitely kept the monster away during my most recent cycle. There are also other preventives that I know have worked for others.

During my cycle I have some experience with that 24 hour business... though not to the awful degree you report. Mine is just a continual pressure in and around the ear that then flares up into full blown attacks at the appropriate times.

Hang in there! We're all here to help if we can.

David

Right you are, Chuck. My own situation is nothing like what KA describes - that's really frightening... I hope she can get some answers pronto!

Kimmie wrote on Jul 28^th, 2008 at 11:30pm:


Kimmie wrote on Jul 30^th, 2008 at 10:17am:


You see bs and have regarded the doctors as quacks, but when clusters is diagnosed, that is accepted and what you've unsuccessfully tried to treat.  Picking and choosing what to believe can lead wrong treatment options.


Kimmie wrote on Jul 29^th, 2008 at 6:39pm:


The "cluster" name comes from repeated attacks subsiding and re-establishing.  As a symptom, most usually automonous reactions happen during each of those attacks, not preceding for days before an attack.


ClusterChuck wrote on Jul 29^th, 2008 at 7:12pm:

ClusterChuck wrote on Jul 29^th, 2008 at 9:07pm:


I support Chuck's words here.


Kimmie wrote on Jul 28^th, 2008 at 11:30pm:


This attitude, redirected to a better diagnosis, perhaps further delineating, would be more beneficial.  A serious look for a specialist or two is likely to reveal more.  
 I've no experience to speak here but things such as Chronic headache, migraine, sinuses, medication rebound, etc, may feed upon each other, clusters could be in the mix.  I have read here of different and mixed visitations in the crucible.

Cyndi Leier-

Please report your husbands experience with that regimen when you can.  I am always interested in hearing peoples experiences with different options. 

Thanks

Kelly

The latest report which makes the point which I was attemping to convey in my earlier post.
===============


Neurol Sci. 2008 May;29 Suppl 1:S1-6.
Cluster headache: from treatment to pathophysiology.

Bussone G.

Department of Clinical Neurosciences, C. Besta Neurological Institute, Via Celoria 11, 20133 Milan, Italy. bussone@istituto-besta.it

This key note lecture illustrates the role of clinical developments in stimulating research and discovery in the area of the pathophysiology of cluster headache (CH) and other trigeminal autonomic cephalalgias (TACs), reviewing the physiological, biochemical and neuroimaging data that have suggested involvement of the hypothalamus in CH pathogenesis. These findings suggested the use of deep brain stimulation as a treatment for chronic drug-resistant CH. The typical circadian and circannual periodicity of CH attacks were the fundamental clinical characteristics that shifted focus from peripheral hypotheses to the idea of central origin for this headache form. Functional neuroimaging demonstrated that TACs are associated with activation of the posterior hypothalamus and there is clinical evidence that patients who suffer from CH have altered biological rhythms. Furthermore, the principal seat of biorhythm regulation - the hypothalamus - is known to have a modulatory role on nociceptive and autonomic pathways, specifically trigemino-vascular nociceptive pathways. Future research will elucidate why neuromodulatory approaches are effective in CH and other TACs, determine whether the hypothalamus is itself the generator of CH attacks, or whether it is activated in response to a generator situated elsewhere, and identify pharmacological treatments that directly target the hypothalamus.

PMID: 18545885

Balanchine wrote on Aug 4^th, 2008 at 11:15am:

Normal MRI or even angio-MRI won't show anything "interesting", if you have a CH (iirc only things such as a PET scan show something actually interesting), unless there is some hidden illness (my first MRI found a pituitary tumor but it's not active and probably not connected with CH in any way). Anyway it's always good to do that

Balanchine wrote on Aug 4^th, 2008 at 11:15am:

For me it is like a vicious circle. My attacks almost always start when I lay down and lack of sleep always causes them. So it's like - I go to bed, have an attack and can't sleep whole night because of it. I fall asleep at like 5am and if I have to wake up early, I sleep for only 3 hours or so and it's very presumably that I will have at least one attack around noon (which doesn't happen normally). OK - I aborted it or didn't have it - so I want to sleep a bit afternoon. I am very tired and sleep, not able to do anything so I lay down and... I can't fall asleep because another attack starts. Yes, I feel fucking awesome then. Can't sleep, can't do anything because I am so exhausted...