Hello my name is Terry, I am from Kentucky I have been suffering from what i think is cluster headaches. i have been to several Dr.s over the years actually since about 1995 and every time i go i get the same ole thing what meds work for you. I tell them none i have ever taken does anything. I say i want to find out whats causing them or stop them form coming back. The past three days have been some of the worse i have ever had. it felt like someone dropped an anvil on my head and them slammed it again and again. I couldn't do anything but pace the floors all night. squeeze my head, curl up in a ball. just as soon i thought they had stopped two hours later bam the right side of my head was throbbing, it lasted about 6 hours and stopped for about 2 hours them the left side. three days later on 2 hours of sleep i fell dead. Have had mri's cat scanns and nothing as usual. Just the same ole thing time after time with dr.s think i am trying to pill shop i guess. I search for a forum sight to see if maybe i could find some help somewhere here in kentucky to help with my problem. I might go a month without and problems, them it seems i will get a headache for 2 months. I have paid a visit to e.r several times, same ole thing there, a bp pill and a shot of demerol, then 30 minute later did that help. no so they do it again and i tell them again, it wont work but since they are the doctor they know whats best (yeah right). I look forward to interacting with member here and maybe learn from their experiences.
Thanks
terry

welcome terry!
rest assured, doctors visits in this case is not the final straw you have. browse the website when you feel a bit better and see if any of the alternatve methodes help. i have only been here for a few days now, but feel better about finding something that helps already! so many things you can try!

it seems that everyone has other things that help for them, only way to know if something helps for yourself, is to try!

hang in there man, and all the best! please keep us updated if you can, and you in turn might be able to help others with your experience.

matt

Even if you have to travel to get to one, specialists have the best training/experience to help with these complex problems.
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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. 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.

Bob and Matt are quite right. You need a headache specialist. In the meantime, take the CH quiz at the left. In general, and almost always, CHs are of short duration (although they can come as frequently as once every hour or so) and one sided. You may or may not have CHs but a good specialist who understands our disease will be able to help you sort it out. The quiz is a starting point for keeping a diary of your headaches and precursors. This info will help whatever dr you find. Good luck and God bless. lance

You've been given some great advice already, especially concerning working with a headache specialist. Now the bad news.....

If it IS CH, there is no cure. There are meds you can take daily while on cycle, we call them "prevents" that will reduce the number and intensity of your attacks. There are very effective abortives, read this link:

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

I abort my attacks in about 6-8 minutes by huffing pure oxygen. Eminates those rides to the hospital for narcotics which never work anyways! ;)

Imitrex injectables and nasal sprays are effective abortives for many. The imitrex pills tend to take too long to be absorbed to be efective for our condition.

Finally, explore our sister site:

Clusterbusters.com

They use alternative methods outside of mainstream medicine. Not a cure either, but as close as we've seen, certainly worth exploring.

Get to a headache specialist, if it is CH, don't lose this website!

Joe

thanks guys, been reading over the forums seeing a lot of interesting things. Hope it all goes away soon, got woke up this morning with another headache. Walked the floor for about 30 minutes laid back down. Woke up feeling ok now i feel it comming back. Sitting here with a heat pad on the back of my head it feels good hope it will help if not heading to the e.r. This has got to stop befor i go nuts just want something besides a narcotic which never works.

Another thing that may help at the onset of the CH is to drink an energy drink like red bull. That and an icepack until you get effective therapies such as the oxygen and/or imitrex.  Also need to think preventative therapy such as verapamil or lithium.

We have others from Kentucky on the board here, perhaps you can share what part of Kentucky you are in, they may be able to refer you to their headache specialist.

Hi Terry and welcome to CH.com. Have you taken the "cluster quiz"? If not please do at the link below, it can give you an idea if you do have CH.

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

Don

Terry, we both know that the ER is not the place to get the care you need; that pain meds won't work for your headache.

Next step seems to be to find a good doc. Contacting a large hospital might get you some leads to an affordable clinic and for help getting help with the meds see:   Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources.

Waiting for what?

Hi Terry,

  Where in kentucky do you live.  There are two of us that live in Western Kentucky (Madisonville)  maybe we can help.  Please let me know, o.k.?  I have a great Dr. here I could send you to. 

oh and yeah...stop going to the ER.  I don't believe even one person has ever been helped there.

I live in central part of ky, lebanon. Yeah e.r dont do much for relief but last time i was there i got a shot of something that knocked it right out. i am working on day four of this thing. I feel like curling up i a ball and dieing somewheres if it didnt hurt so much to lay down. :'(

Quote:

...last time i was there i got a shot of something that knocked it right out.

You might want to find out what that "something" was.

o.k. well you're pretty far away for you to see my Doctor, but please read the oxygen link that Guiseppi gave you above.  Any Dr. with a medical degree can write you a prescription so you can take it to a supply place like Lincare or Apria and get some tanks, a regulator and a non-rebreather mask. 

Just in case you wouldn't mind travelling the 3-plus hours to see my Dr.  here is his name and phone number.  Mention my name. He WILL give you a script for 02. 

  Dr. Timothy McGhee
(270) 821-4444