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Hello there. I can't tell you how happy I am to have stumbled on this site. I have to say that as I logged on I was in the middle of my first ever experience with full panic. I am SO not that type of person. But, in  my 50 years I have never been through pain like I've had since December 2012. Without warning or injury, I developed pain on the Rt side of my head that just never quits. The Rt side of my face is unbelievably painful and my eye feels like someone has poked a cattleprod in and turned it. So, as I face this day in and day out, I do my best to be a good mom to 2 teens and wife to my husband of 28 years. The panic I speak of came as I wandered around the house, in pain and missing my husband more than I have ever missed anything in my life. I haven't experienced panic before, but I did today...and as I read through some of the panel ideas for easing the pain, I found a couple of ideas I hadn't tried...and they helped!

Yesterday was a tough day and I truly appreciated my husband sitting quietly while the Dr's poked and prodded me yet again. I'd waited 3 months for the specialist  appointment and really, really hoped to get some answers about the severe pain plaguing my generally super healthy and fit body. But, the neuro-opthamology team informed me that the MRI's, visual tests and other testing had effectively ruled out anything except cluster headache. They gave no solutions, suggestions or advice...just the simple statement that "you have a headache, not MS or cancer."

After a sad/restless/bewildered and sleepless night I had to put on the my "it'll be okay" face and drive my 17year old daughter and husband to the start of their 7 day bicycle touring trip . I knew how excited they both were and didn't want them to see my sadness, but it really set in when I  returned home alone to face the empty house, the pain and the realization that no doctor can fix this. I have never felt so truly alone.

As I struggled to calm myself down, breathe and get the pain calmed down, I happened upon this site...I am grateful beyond words.

I have alot to learn and I believe this is a great place to start...

It is a relief just to see that there are others dealing with this...


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So glad you found us, but so sad that you had the need.

Just curious, but what kind of specialist did you see? 

The bad news is that you have been diagnosed with CH.  The good news is that finding this site is a great starting point in the long road that is probably, but not necessarily

ahead of you. 

I think that most here will tell you that with this disease, it is of utmost importance to advocate for yourself, since the medical community worldwide, for the most part, is woefully uneducated, and thus inept at treating CH.

Please read, read, read.  The best place I can recommend you start is The Clusterbuster Files.  Click on the "Forum Jump" menu at the bottom right side of this page.  Under the General Category" click "CluserBuster Files".

Stay in touch and ask any question, no matter what it is.  There are no stupid questions.

We're here for you,


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Hi ann,

Welcome to the "unluckiest" club in the universe.  You'll get some great advice here that undoubtedly beats anything from most doctors.  I found that out quickly.  Some day that may all change, but it's a sad reality for most.

There are lots of treatments that seem to have varying effects on CH.  I'd say give 'em all a try and sooner or later (hopefully sooner) you will find something that at least lessens the intensity, duration or frequency.  With any luck, and there are those who will testify, you'll find almost complete relief for significant amounts of time.

Whatever you do, don't give up trying!  This group has experienced every imaginable situation and treatment you could think of.   Ask questions, throw out the occasional rant if needed and above all else .........

Tell us what works and what doesn't!

Good luck, hang in there and don't lose hope ...... it WILL get better!

weatherman  ;)

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Ann -- they prescribed nothing???  First thing you want is oxygen (read the file under the MENU tab on the left side of the page).  You should demand that, immediately.

Once you've looked at some of the files Bob mentions, particularly the numbered ones about the ClusterBusters method, let us know whether you're interested in busting.  (You don't have to be to stay here and get great advice, but if you are, we can advise you).

You're probably right at some level that "no doctor can fix this," at least not right now, but there are treatments, pharmaceutical and alternative, that can help.  I'd suggest that you read about the "vitamin D3" regimen that has helped a lot of people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804)

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Hi Ann,

you have found the right place. We can show you what the doctors know, and don't know. When dealing with doctors, you have to be the most informed person in the room... sad but true. Oxygen is the first step to your freedom. If you are uncomfortable with busting we can give advise on what to expect from doctors. Most of us here have been down that path and nothing worked for us... why we are here instead. However there are many at our sister site who are happy with their level of "conventional treatment".

Read here under clusterbuster files, and for the more conventional approach I suggest clusterheadaches.com. This is our sister site that deals mostly with conventional medicine. Read up there as well. To ARM you for your next "specialist" visit I offer this PDF file:


If they don't recognise this paper as the way to go... ask why and be prepared to find another doctor. The paper shows the most effective current conventional treatments and ranks them in order of effectiveness.

Hope this helps... make your first priority oxygen... ya I lauged at it at first, now I credit it with giving my life back.

Start with the ClusterO2 Kit here:


You won't find this from your medical supplier, but a must have. Also no concentrators, just tanks of pure O2 supplied by a regulator that will deliver minimum 15 liters per munite (lpm), preferrably 25lpm. You will want an "M" tank for home, and a couple of "E" tanks for the car. Imagine just using oxygen for just 10-15 minuites and then being completely free of pain to go about your life! Yes, it works that good for almost all of us.

Read up and get your life back now!

Take control of your treatment and there will be many pain free days ahead.

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Hi Ann,

Welcome to a site that has some of the best people in the world. It's a shame it too clusters to get them all here in one place. ;)

I'm curious, did the doctors also rule out Trigeminal Neuralgia? I'm not an expert, but clusters tend to go completely, then come back. TN can hand around for days, weeks, months, and seem to fade in and out in intensity. I have a couple friends who had it.

Both Trigeminal Neuralgia and Clusters attack the same nerve in the face, the Trigeminal nerve. I would say that if there were anything else out there as painful as clusters, it would be TN.

I understand that anything as gentle as a breeze on the face can trigger it off sometimes.

Anyway, seems you've already gotten good advice on treatments and such.

Big hugs, MG

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Hi Ann,

Glad that you found us! :) I think the worst part of this is the isolation. It is so wonderful that you are here because you will no longer feel isolated. This board is just a few clicks away and that is very helpful many days.

As said above, read and learn. It made me feel more in control just to know that I was not being a sissy and others shared my pain and understood it. Just knowing that a cup of coffee would help was a godsend for me. Energy drinks work even better for many.

I understand the empty, lonely feeling. It is very hard to take or even understand. But, your were given a devastating diagnosis and no offer of hope. Here, there is success and hope. 

all the best,


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