Just reaching out for support/or assistance to those who are similar with symptoms to me.

Been KIP scale red on 3 of 6 previous cycles and trying not to go their on the current one.  More to live for knowing the cycle will pass.   Obviously pain free atm. 

Oxygen amount use is hard to get delivered due to sporadic cycle...h tank once per week e tanks bled out sooner than expected while working away from home.

Wife of 2 years witnessing first dance.  Stepdaughter 10 y/o heard me screaming into a towel from other side of the house. 

They think I am going to die soon.

7th cycle in 16 years, episodic up to 6 months and max 10 ch  per day.  I think they would be right without the O2.

I have always been a bad dancer...and trust this too, shall pass....as it has 6 times previous with at least 2.5 years PFD.

Hey JK,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

Check your PM inbox at the upper left corner of this screen below the date.  Click on the bold print saying you have 1 new message.  I've sent you some additional information.

Regarding oxygen therapy...  I've a new method you can try that's nearly as effective as the demand valve method and the abort times are just as short.  The surprising thing about this method of oxygen therapy is it uses a fifth the volume of oxygen consumed during an abort at a flow rate of 15 or 25 liters/minute.

See the following link for the details on how to use it.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

Welcome jk7x16. You didn't say if you have been actually diagnosed with cluster headaches by a qualified doctor.
If not, click on the cluster quiz button on the left side of your screen and let us know the results.
If you have been diagnosed, now is the time to start talking to your wife and stepdaughter about your headaches. Be totally honest and explain everything to them and everything you'd need from them during an attack. Especially the daughter. Children often think they have done something to cause the parent's pain.
There is a section of this website for our supporters. Possibly you could get your wife to there.
Please keep us informed.

It's essential that you have a good diagnosis from a doc who has experience/skill with complex headache disorders. If you have not, and it's all possible, avoid neurologists and pain clinics and find a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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There are numerous headaches which mimic Cluster but which are not headache disorders. And self-diagnosis and self-treatment isn't wise.

Oxygen is a good, fast acting abortive for an attack but its action life is too short to use as the only abortive in your bag. See the PDF file below.

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Hi jk
It's good that you have supporters there, now you just need to teach them how to support you.  Obviously they cannot possibly  know what you are going through,(thank god) so get them together some time while you are p/f and do your best to explain Put it in simple terms for the little one, and assure them both you are not going to die (even if you do want to some times).Tell them how they can best help you cope - only you know how they can best help. For me it's to be left completely alone.At first my husband was a little offended that I didn't want him there fussing around, but he understands now that I can't bear to see how worried and upset he is when I'm trying to cope with the pain. He stays close by, so I always know he will come if I call him.

It often helps children to be usefull. Let her think she's helping you and she may feel she has some control. Give her some really important jobs to do like fluffing up your cushions, putting some coffee on for when you feel better, fetch an ice pack etc or whatever works for you. I know a 7 year old (daughter of a CHer) who even gives her mother the imitrex injection.

Also, you could send them both here to our supporters board. We love supporters. [smiley=hug.gif]
Maz.