Hi Kat and welcome to a place where people know just what the pain of a CH is like as we either have them ourselves or we support someone with them. You are no longer alone but part of a family spread all over the world.

So much of what you wrote reminds me of life before I had any control over my CH with no effective medication. Have you got anything to prevent CHs? Something like verapamil or lithium? These can help block many of the CHs you might get.

Have you got anything to kill off a CH when one arrives? Oxygen has been my lifeline as breathing it at 25lpm through a non-rebreather mask can kill off a CH in under 5 minutes. Read up about how we use it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Have you got injectable imitrex (also known as sumatriptan or imigran)? This too can kill off a CH in about 5 minutes.

The combination of an effective preventive plus abortives is life changing.

Another thing to try is energy drinks, something like Red Bull or Monster, which contains both caffeine and taurine. Just drink it rapidly as soon as a CH starts and it can help reduce the duration and intensity of a CH.

Also read up about how many of us are using vitamin D3 to prevent our CHs. I've been CH pain free for over 2.5 years using it with some over 4 years. It has helped about 80% of people who have tried it.

Read up like mad all the posts you can here, you'll learn so much. And ask us anything.

Hi Kat,
Wow. Apart from your age, and the number of kids you have, you have just told my story word for word.

You don't say what meds you have, if any. There is plenty of stuff that will help make your episodes more bearable, so you can get your life back. Take note of what Mike NZ has suggested, because these are the most common and most effective treatments.

I use the oxygen when I'm home - I'm lucky enough to have a spare room where I keep it. I've made up  the bed and when I get a hit at night I just creep off to my little room, and usually sleep in there for the duration of the episode. My husband doesn't get disturbed, and doesn't even know I've had a bad night, till I tell him. If you have to use it in your own room your husband would probably sleep through it anyway.

When I go out and I'm away from my 02 tanks I always carry two injections with me in my bag. I NEVER leave the house without them. A quick trip to the nearest ladies room and no one is any the wiser. I've even used them in public a couple of times, and no one noticed. They will abort the worst CH in little more than 5 minutes.

I know in America you may have insurance issues, or have to pay for everything yourself, and the injections are expensive. If you get the prescription filled a few times when you are not in an episode, you will have a stockpile for when you need them, and it helps to spread the cost.

I know there are others who live in Texas. On the left of your screen is a blue tab entitled "where we live". Have a look there and you may find some one who lives near you. I have regular lunch dates with a young lady who found me that way. She's 28 and I'm 64, and we have absolutely nothing in common apart from this thing in our heads, but we both enjoy our get-togethers.

Last but not least, You are blessed in having a loving family. Get your husband to join up and talk to us on the supporters corner. Loving supporters are what we need most, but this condition impacts on their lives too, and often they don't know how to handle what happens to you. We can support him, while he supports you.

Keep coming back here to ask questions ( no question is too small or too silly) or to talk, share what you know, or just rant if you need to. We're not doctors here, but we are experts.
Maz.

Thank you all for your supportive words. I'm sorry I did not list my medications. I guess they are kinda pointless in my eyes because they don't cure it, they just occasionally help. I have been put on zomig (A migrane medicine I had as a kid for regular migraines that I no longer have anymore) It did not work. I tried Imitrex in pill form, it did not work. I was put on steriods by my neurologist. He tried several different experiements with these to see if he could break my cluster cycle. I was given several different types of pain killers. Loratab in all strengths, vicoden, 800 mg ibprofen, and other ones that I don't remember the exact name of because they made me feel sick on top of the pain. I was put on the needless imitrex shots. Sumatriptan? I believe is the technical term. I have been put on oxygen. That was a no go and almost made the pain worse because of the air blowing up that side of my nose made the piercing pain in my temple worse. The ONLY thing, perscription wise, that has actually killed a few beasts is imitrex in nasel form. I squirt it up the right nostril (that is always the side I have them on) and the cluster is gone within a couple minutes. It is nice too because I don't have the after shocks of pain meds. I have had several cases where I ended up in the ER and they only thing that works at that point is a shot of Dilaudid mixed with phenegran. I had a bad experience with toradol and reglan that cause me to have a panick attack and basically crawl out of my skin, so there is not a lot I will let them do for me at the ER anymore other than that. I avoid the hospital at all costs however. One, most doctors don't understand cluster headaches. They treat me like I'm a drug addict there for pain meds. I tell them after this spell you will not see me again for two years unless I am dying. After the spell is over I really don't go back, even to the doctor until they hit again.
Thank you for the ideas for my children. I know they don't understand. My husband is very good about controling the crowd while I'm having one. He will usually only ask me once if there is anything he can do (he knows there is not, but he can't help but ask) The kids know that I am going through something very painful. But they also get told that I am tough and that I love them very much. I hide from them so I don't scare them. Not ony do I look like I'm having a stroke from my eye drooping, but the pacing and the banging my temple with my fist, might come across as a little intense to their young eyes. When they are older I will explain more. For now it isn't something I want to go into detail over. The two older ones already worry about money and things they shouldn't at this age. I don't want to dump more on them. I have never lost my temper or anything with them when I'm in pain. I understand that it is not their fault. I am frustrated with the pain, not the people around me. I don't even expect them quiet. The familar sounds of home are comforting to me. As of tomorrow I will be a week in to this spell. They are getting worse every day. The pain lasts longer. The shadows come and go more often, and I rarely sleep because I'm afraid of the pain it will bring. I have found one of my triggers is getting too hot. I take cool showers and avoid the 100 temperatures of the summertime when I'm going through these. What are some other triggers I can watch out for? I don't smoke or drink (often... as in maybe once a month when we have free time and not at all when I'm experiencing these things) but I don't know what some of the actually triggers are that people experience. I know everyone is different. But there is not a lot of research to look up. I keep reading the same information over and over on different websites. Like that's it? We just repeat oursevles... most painful condition known to medical science... no cure.. here are the symptoms.... blah blah blah. I want to see more studies done. An actual fight for a cure. It's frustrating (but yet a good thing) how it affects only .1% of the population. It makes raising awarness very hard to do!
I really enjoy all of ya'lls posts. I have a couple people on facebook saying they have cluster headaches. Talking about how they feel so sick and have to go lay down in a dark room. How they get them for a week at a time. I have to fight back the urge to be annoyed. My response was to simply post a link to the cluster headache test found on this website. I answerwed all the questions correctly when I took it. I hope they take it and realize they have migraines and are NOT a clusterhead. lol

It sound as though your doc is not skilled in treating the complexities of headache. If you have the option, suggest you locate 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.

Thank you for referring me to the "dopiest responses". I actually laughed out loud at several of them. I have gotten many of those responses. People with good intent that just have the name "headache" stuck in their head and don't understand it's a PAIN in my head.. not a headache. As far as the oxygen goes. Yep... that's what the doctor at the ER did. I asked for oxygen to give it a try, and he gave me the things that go up my nose. I ended up ripping them out after a few min. That dry air blowing directly up the right side made my right eye water worse, and the pain in my temple spread through my nasal cavity on that side. I swore off oxygen at that point. Next time I end up there I will ask for the actual mask. I avoid the pain killers for the most part. The doctor prescribed them but you are right, they do not work fast enough or period half the time. The nasal Imitrex has been my best bet so far. There is the occasion though where they don't work and the pain is so much I really don't care if they give me a dang shot in the rear as long as the pain stops. RELIEF is all I want at that point. (At any point really) I'm past a week now, and I haven't been to the ER once. There have been a few times I almost resorted to it though. I have a few that last for over an hour and at that point I'm so far at the end of my rope I'm sobbing. I must say I've gotten pretty tough from these things though. I had my daughter in January and my contractions were 1-2 min apart by the time we made it to the hospital. I was barely sweating and was pretty calm. The nurse told my husband I was the toughest woman she had ever seen when it came to pain. She was watching the contraction monitor and said I should have been having more of a reaction to the strength of the contractions. He simply said, she suffers from cluster headaches, there is not much my wife can't handle. It's almost a bad thing when you have become so accustomed to pain, you barely bat an eye at labor pains! Thank you everyone for your responses. This group is helping me a lot. I read the posts at night when I can't force my self to sleep because of the fear of pain. The beast is NOT a nice alarm clock. Take care everyone!

Hi Kat,

I hope that you try O2 with a non-rebreather mask. I got my husband set up with that in one day. It took a little running around town but it was so worth it. It was a lifesaver for him because it really worked to stop an attack especially if he caught it early.

Also, do try the Regimen that I have linked to in my signature line. It has helped so many! My husband is pain free now