Up until a few days ago I didn't know that cluster headaches is what they call the pain I have been feeling for almost 20 years now. The stabbing pain behind my eye that feels like someone just hammered a red hot stake into the head. I have been diagnosed with Chronic Cluster headaches, I'm not really happy knowing it has a name. I have always called it Faust.
I have always just dealt with the pain no meds no O2, the last three years I have been using breathing control methods and meditation to control the pain. it helps until about lvl 5 after that I have a very hard time focusing.
The pressure is constant behind my left eye on any given day i am usually at about lvl 3 a really good day would be anything below a lvl 2. I have been living in fear of myself because of the pain. It's has gotten so bad that I totally lose it. I get so angry because of the pain I cause damage to myself, i have scared the hell out of my wife, and i have trashed many of the things we have owned in the past. I'm feeling really bad about what I have been putting my wife through for so many years, have been experiencing deep depression for the last couple of weeks.
I'm in the middle of a cycle right now every couple of hours I get hit.

Sorry just wanted to vent a lil...
Thanks for listening.

Ed.

Oh thanks for putting this website together. It's nice to know that people do understand what I am feeling. But I hate the fact that you are experiencing it as well..

You are welcome to join us.

Is there a reason for not telling us about how you are being treated or for asking for information on treatment?
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When we read someone writing about their dread of CH or the anxiety of waiting for the next attack, we are seeing the emotional effects of CH. These reactions are not fixed even by good medical treatment of the Clusters.

This is the first few paragraphs from a longer article: You can find the entire piece on the OUCH site or I'll e-mail it to you if you will leave your address (using the instant message button.) (The whole thing is too large to be posted here.) The approach outlined to reduce suffering is developed from cognitive therapy, a well researched therapy used by mental health types. But don't ask for it unless you accept that it takes practice and commitment to make it work! There is no Imitrex injection for this problem.

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AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks. 

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN!  This is the paradox which we need to resolve if CH is not to be the controlling experience in life. 
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

haywire wrote on Mar 13^th, 2010 at 2:09pm:

It's nice to know that people do understand what I am feeling. But I hate the fact that you are experiencing it as well..

Hey Haywie,

Some of us have made great strides in getting this beast under control. I hope you'll hang around, research, ask questions, and potentially learn how to prevent/abort a whole lot of attacks.

Hi Bob,

I'm sorry, I'm just learning about this I didn't realize that many of the symptoms I  experienced in the past were part of CH. I always attributed them to work conditions or the car accident in '91  planted  the upper left side of my skull into the windshield.  The doctor gave me a sample of sumatriptan? He also gave me a prescription to take when the cycles starts, but I didn't look at the name I just took it straight to the Pharmacy that's when they told me my insurance does not cover the medication. . He also prescribed O2, the company is coming by on monday to leave a monitor and check my 02 lvls at night.

I apologize if I seem cold I did not grow up sharing my feeling. I haven't asked for more information cause I have been doing what the website has suggested and read as much as i can about CH and about what treatments out there to help me. I know there are many treatment but I have yet to try O2. If that helps like I keep reading, I will be a happy camper. the sample the specialist gave me scares me cause it says that it could give me a heart attack. I don't do well with medications, So if O2 can help me  very cool. 
I can get very impatient and i did not want to waste anyone's time with things I should have already taken upon myself to find out.

Quote:

I haven't asked for more information cause I have been doing what the website has suggested and read as much as i can about CH and about what treatments out there to help me. I

Read away Haywire.  We'll keep the light on for any questions when you come back. You're not wasdting anyone's time.  This site is intended for EXACTLY that.  Help, info, support and venting.   ;)

I suspect your Dr didn't put 'for Cluster headaches' on your O2 prescription. If they are going to monitor you O2 lvls and you don't have some other problem, you will be refused O2.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Please read the O2 info link above to learn what is needed.

Good Luck,  Don

No wasted time here Ed. Every moment spent is a gift from DJ and those who take the time to help others.

All the best

Iddy

haywire wrote on Mar 13^th, 2010 at 4:13pm:

The doctor gave me a sample of sumatriptan? ... the sample the specialist gave me scares me cause it says that it could give me a heart attack.....

That Sumatriptan would be what we call imitrex in the US, imigran most other places I believe.

If it is injectible or even nasal inhaler, it'll kill an attack right off (if you catch it at the onset). If it is pill form, well that isn't very effective for most of us with CH. Too slow. If you are experiencing predictable, regularly timed hits, you could try taking the pill version 1 hour before....

I've taken hundreds of doses of imitrex, no heart attack concerns for me. Please let us know what form yours is in, as there is a specific way to administer the injectible  that can enable you to abort 2 or 3 more attacks than the standard prescribed way of dosing (link here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).

Thanks for the quick response.

The accident catches my attention for headaches can arise from head injury, sometimes with a time delay between injury and onset. It's possible that you have the symptoms of Cluster but don't have Cluster headache as a primary problem. (That doesn't help you, I understand, but it's by way of asking....)

Have you consulted a headache specialist? Not just any neurologist, even your primary care doc, for they often lack the deep skill needed to treat complex headache disorders. Suggest you explore the move with your current doc.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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What is the med which your insurance won't cover?
Normally, you would be started on a preventive med along with the sumatriptan--and they are cheap and covered. But the suma aborts the immediate attack but has a short life; the preventive med is used daily and it reduces the frequency and intensity of attacks. It's not an either-or issue.

I'm uncomforable suggesting this and that for Cluster if, in fact, you have a cluster-LIKE problem. Your doc will understand this distinction and it may have some important impacts on how you need to be treated.

Get some clarity on these questions and get back. Then we can start feeding you some medical guidance which is appropriate.

Don't get mad, get even!  Assemble your arsenal and counter attack as required.  Sometimes they sneak through.  Learn from it and keep at it.

Try the stuff we all use to help or alleviate the pain and cycles. 

And Shaggy's number 1 rule of cluster headaches.......
Don't forget about them when you are not in your cycle!  Have your arsenal ready.  I know you said you are chronic, but someday you won't be.  Hang in there. 

--Shaggy

The prescription i was given is to begin the preventive  measures. The nurse  had told me that the company that take care of the oxygen for them would need to set up monitor for insurance reasons, so that they can begin delivery? That's what I'm told. This is the first time I have been given a suggestions for the pain. I'm not ready to abandon my doctor just yet. He explained to me what may be happening to me and that he has worked with others who suffer with cluster headaches. He also said I need to get into counseling. The sumatriptan is called sumavel DosePro it's an needle-free delivery system.
I really don't care if it was the accident that started this or if it was just gonna happen naturally. I would like if it just stopped all together. I don't like the fact that I now have a scale so that I can tell how bad I'm really hurting. I always thought that my eye started to drop because of the scar tissue left over from the accident was irritated. I worked outdoors for many years in some harsh conditions so I believed that the reason for my runny or stuffy nose.

We tend to dread more that which we can't control. While there is no "cure" for cluster headaches, most of us  CAN effectively control them, and by doing so we can regain a measure of control over our own lives.

Like you, I have suffered with these things for more than 20 years. I used to dread them coming. Having no control and no way to abate the pain through cycles that might last eight or more weeks drove me literally to the edge of my sanity.

In the middle of one of the most severe cycles I have ever faced about five years ago I stopped being nice to the medical community and started demanding treatment.  I once had a (very small town) doctor tell me that I needed to get more sleep to stop these headaches! I think he was kind of surprised when I came across his desk at him and screamed, " How the FUCK am I supposed to sleep with a head that feels like someone is pile driving a stake through my right eye, you dumb SOB ?" While I don't usually recommend this sort of treatment for anyone, the truth is that my pain level and my frustration level weren't registering with the doc and it was apparant that I wasn't going to get effective treatment until it did. When I finally got through to him, I got successful treatment that controlled my headaches during my cycles, and I got back my life. 

Pray that you will do the same, especially when your oxygen gets there.

Remember to order yourself a regulator capable of delivering at least 15 litres per minute of oxygen and make sure to get  a non-rebreather mask as well.

Best;

Jason