Hello I'm Keith. 32-M-So Cal and new to the board. My wife found this site and told me about it so I figured I would join in.

Going through a cluster right now, it's been 2 weeks and it seems to be getting worse. This cluster, my attacks come at 11pm pst so that gives me an hour to go and dreading tonight.

There is no right way to put this but these Ch's are so incredibly overwhelming and I feel as if I am losing my life. I have some amazing things happening, I'm about to be a dad! But I am lifeless right now. I'm inpatient with my pregnant wife, I'm contemplating inviting opiates back into my life which is scary because I'm a recovering heroin attack (7 years, program) but it's just so overwhelming. I know it will pass, it has for the past 6 years but the fear that these cause makes me feel as if I am off my rocker. 

It is nice to know that there are others that deal with this, during my attacks I'm so isolated and can't wrap my head around the fact that life even exists outside of an attack. I'm going to try and remember that when my next attack comes, just so I don't feel so alone. I have about 30 minutes until the beast arrives. I'm going to try and relax. I'm glad you are out there. I'll wish you luck as I'm sure you will wish me.

Hi Keith, and welcome,
Sorry to read your going through a rough time, but firstly
Opiates do zilch when it comes to treating CH's, you need
to be on the right meds like a preventative Verapamil, and 02 to abort an attack, you can find the oxygen link to the left of this page. Are you seeing a headache specialist? as this should be your first line of attack when it comes to going into battle with the beast.

Cheers, Hoppy.

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.
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lEssential that you get a solid diagnosis. Self-diagnosis and self-treatment isn't wise.

Pain meds/opiates don't work--assuming you have Cluster.
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There are many disorders which mimic Cluster but which are not headache disorders. This why you need a sharp doc get get you onthe correct track.
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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.

Quote:

I'm contemplating inviting opiates back into my life

That statement scares the hell outa me! No, No, No. Don't even think about it. There are no opiates that will help with clusters.
Find a neurologist with headache training. Read up on oxygen. Read up on the vitamin D3 treatment. At the first feeling of an on-coming attack take a shot of energy drink like Red Bull, Monster or 5 Hour. Keep a heat pack or ice pack ready at all times.
Right now it's early Tuesday morning in So Cal. Good time to find a neurologist. Get goin'.

Keith, you are not alone. I felt like the lone ranger prior to this site also. I became a stranger to myself, a stranger I didnt much like, let alone how my disposition affected those around me. resorting to something that will affect you adversely and not help clusters, as I am sure you are aware would only make things worse. YES, and I know you've heard this before, no matter how bad things get, they could still be worse. get the treatment you need and rely on us when you need to dump, bitch, moan, complain as you have the right. Hang tough...............   

Thank you guys so much for the kind words. Last nights attack was not as bad as the previous night. I'm realizing I have a very small window when I start to feel the attack come and then getting the sumatriptan into my body. I did feel relief posting about it last night.

I know that opiates are not an option but at the moment last night I was pretty broken and anything sounded like a good idea rather than the impending doom that was slowly creeping up on me.

I've been without medical insurance for the past 14 years so it has really hindered any type of recovery with CH, but thankfully I start a new job today that has benefits that will kick in after 90 days. At this moment I am just hoping that I do not have an attack during work.

Thanks again for all the help so far. I plan on taking into consideration other avenues such as vitamin D3 treatment and o2

I do know the feeling of helplessness; Typically I do not surf the web for help. my wife, like yours, found this site and suggested I check it out. I didnt think it would help, but it does. you have some great things going on new baby, new job. good for you ! hard as it is and easy for me to say, but celebrate that and don't let this sh&* beat you. 

You're not alone here Keith. We've all been there - and still go there. I know what it's like to feel totally helpless in your agony and to have some very dark thoughts.

Opiates will only generate more problems for you, and won't help the CH. Not even morphine will have any effect.  If you can get it , have 02 at home and imitrex auto injections when you're out or at work. Both will abort a big one in a few minutes. For the 02 you must have a flow rate of at least 15 litres per minute ( more is better) and a non-rebreather mask. Both are vital and if you get it wrong it won't work. Imitrex is available in tablets and nasal spray too but they are next to useless as they take too long to take effect.

You've come to the right place, and you now have friends all over the world who truly understand.   :)      Let us know how you're doing, and congratulations on the baby.

Hope this helps
Maz.

Hi Keith and another welcome from another corner of the world. There are so many people here who understand what you're going through.

Skip the opiates, from experience they don't help (eating the packet they come with will be just as useful) and will possibly take you to a place you don't want to go to again.