“Be afraid. Be Very afraid.” That phrase pops into my head at the very first sign of a cluster.  I was diagnosed officially last week.  The headaches started as an intense pain behind my right eye that lasted for 15-20 minutes.  Last nite I had the worst ever lasting about 4 hours with no break then about ½ hour break and it started up again.  I didn’t think it was possible for the pain to go on that long.  The doctor gave me Cafergot pills, but I am either taking them too late or they don’t work.  He also gave me some pain meds.  I didn’t think it was possible to have a pain that nothing gets rid of.   The best description now of the pain is one I read where it feels like long talons of a bird, dipped in poison grabbing hold of the right side of my head.  I don’t know how people who have had this for years can stand it.  Last night as I was pacing the floor, I kept saying to myself – “Just wait it out, it will go away, just wait it out”, because in the past it was a 15-20 minute thing.  Do you guys find yourselves chanting?   I also promised God about everything you can imagine and it appears if I get through this, I will be one great human being. 
I am sorry you guys have this too.  I had never heard of clusters until I started getting them.  I guess partly because they occur at nite and other than looking very tired you would never guess from looking at me, what I actually went through last nite and no one would understand anyway.  That is probably how most people are.   I hope we all get better and don’t have to go through this anymore. 

Welcome..... I'm sorry you had to seek us out, but glad you found us.

First off......there are no victims here, only fighters.  ;)

It sounds like you need to find a headache specialist experienced in treating clusters. There are many treatment options available including O2. (a favorite among many here) Click the O2 link on the left hand list.

Just remember, you need not suffer untreated and there is always hope.

Victim is as victim does.

Start fighting back. Or be a victim.

Welcome to this horrible club, but we're glad you found us. 

I come on here as much as I can even in remission which I am in now.  You get use to dealing with clusters over time and since you have found this site all I can suggest is read everything.   You'll find things to try that doctors have no clue about.   First off, get a good neurologists and if possible research oxygen therapy.  It does wonders on here and no drugs are needed.  There are many routes to take.  It all depends on you and how you manage your pain.  I'm here as well as everybody else to help answer questions and most of all, be a supporter through tough times. 

I wish you some pain free time real soon.

Cheers,
Chad

Hi Tammy,

I have been where you are.  I think everyone here has. You're not alone.   

Now that you have been  Dx'ed you need to push your Dr for a script for 02.  Until you get it, try drinking an energy drink ,like Red Bull, at the first sign of an attack. Drink it as fast as you can. It helps lessen the severity and duration of my hits.

Read all you can here.  There is much to learn and many who will move mountains to help you.

Jeannie

Welcome Tammy

   Sorry for your pain.   there is help out there...just print up some of the info on this site, and take to your doctor...perhaps he or she will be open to learning about it.   Most Drs don't know what it is like, or what to give for it , and some will even pretend that they do, to save face.
   Lots of proper info here.. no need to suffer like that.

My first reaction was that your doc is not very sophisticated in the ways of Cluster! Suggest you locate a headache specialist and not any neurologist.
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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.
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These are the types of meds which you should be hearing about from a headache doc.

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Here is a introduction to cluster published by family practice docs:


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;
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Read and learn much: get back with specifici questions as they arise.

Best wishes,

I am brand new here but have suffered for at least 21 years off and on.  The best advice I can give is find a good neurologist that has treated people with these types of headaches.  I went thru many until I found one that prescribes the meds I need along with o2 which I have tried for the first time and I am still on the fence about it.

Tammy1 welcome to CH.com. Reading around this site will give more info than most Dr's have. One important thing is pain meds are usually no help for CH and can make it worse. This may be why you had 4 hour attacks.

Jeffs, welcome too. Using the oxygen (O2) properly is very important. It must be through a NON-REBREATHER mask, the one with a bag and at a recommended 15lpm min.

There are many up to date treatments that you only need to read here to find.

Good Luck, Don

I totally agree with Racer-  you don't have to be a victim. You CAN fight back.

The others are right too- a good neuro who has experience treating ch, not one who just throws meds at it and hope it "sticks".  o2 with a non-rebreather mask at a minimum of 15lpm works for me in as little as 7 mins, but others have had even better results.

Hang in there Tammy!   You don't have to be afraid. There are many weapons to use to fight back.

Agree that pain meds just don't work- they just make me dizzy and nauseous which is not very helpful. O2 works the best. also an ice pack on the side of the pain. Not much else seems to work for me so good luck.