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        New Message Board Archives >> 2002 Posts >> diagnosis
        
(Message started by: Rusty on Sep 22^nd, 2002, 5:19pm)

Title: diagnosis
Post by Rusty on Sep 22^nd, 2002, 5:19pm

I have been having headaches since last December. I have had 2 root canals, been on anti-infamatories to no avail. Finally was seen by a neurologist who took 5 minutes to exam me, and said not to worry I wasn't dying it was cluster headaches.... live with it. Well I am not real pleased with living with it and I am still not positive that it isn't my teeth but I am at an impass as to what to do. My symptoms certainly fit in with clusters. I am not really asking for answers, just felt like bitching a little. ::)

Title: Re: diagnosis
Post by Drk^Angel on Sep 22^nd, 2002, 5:24pm

Maybe ya should see a new neurologist... One that would do more than to tell you to deal with it. A good doc would work with you to find a viable treatment. Another suggestion... Read as much as you can on this site, and the OUCH site to become aquainted with CH... That should help you determine if what you have is indeed CH, or if it's just a misdiagnosis. If you feel confident that you do have CH, print out as much information as you can, and take it with you when you see the next neuro so that if they're not aquainted with CH, then at least they may learn from the information you provide to them. Good luck!!

PFDAN................................ Drk^Angel

Title: Re: diagnosis
Post by 2late on Sep 22^nd, 2002, 5:34pm

your post is me 5yrs. ago, thought it was my teeth. had a bad neuro, life really sucked, then i found a good neuro, got on a med program & now i can deal with this shit! take Drk^Angel's advice he know's what he's talkin' about. welcome to the board!!! .............2late

Title: Re: diagnosis
Post by pjbgravely on Sep 22^nd, 2002, 5:35pm

Check out the posts about teeth and you will probably change your mind.

Title: Re: diagnosis
Post by LTBullitt on Sep 22^nd, 2002, 5:42pm

heehe teeth
I was told my hair waas too long and it was causing tension headaches so I shaved it. lol
I don't make this stuff up.

Glad I wasn't told it was my teeth though I prob would have yanked them. :(

Title: Re: diagnosis
Post by NancyMcFree on Sep 22^nd, 2002, 5:44pm

Went to the dentist and ondodontist ... take the advice above !!!! Take the cluster headache quiz while you are at it too. Welcome to the board.

Title: Re: diagnosis
Post by frankzappa on Sep 22^nd, 2002, 6:04pm

Name is Bill I am new to this SITE as of yesterday, its funny what a mean cluster will drive you to do. I finally was fed up with being uninformed this morning after my 6th CH in a days period (which is an all time first for me) usually only have one maybe two. I typed in cluster headache on google and found all of you. I have spent most of the day looking at a wealth of information. I am pleased and touched that there is a support group for this. I have suffered for over 18 years, funny thing I quit tooting cocaine and got clusters 18 years ago... Tell you the truth I rather have a cluster than that gorilla on my back, but during a cluster I'd rather have anything esle than the cluster. I was missed diagnosed with sinusus teeth, neck injury, inner ear problems, all kind of stuff I didnt have wrong with me. I changed family doctors 14 years ago, end I described to him what I felt like, he immediatly said sounds like CH. WOW I said whats CH thinking (cancer of the head) he informed me and gave some articles from his files and instructed me to go ahead and get an MRI and checked out by a neur he did say if is a cluster syndrome that no test will find anything wrong. He was right, and I felt relieved (with no physical relief) at finally knowing something. Nevertheless I havent found anything really that works well for a preventive but the Imitrex works pretty well for me in shot form. I had been free for 2 years until the beginning of September 2002, and now everyday since minus 2 days and nights the devil has gotten me. I hate the beast but I have grown in acceptance that this is how it is... Till the next one and the beast hopefully some day will be gone. My Dad also suffered, but the last 14 years of his life he did not have a CH run. Instead he got lung cancer. He used to tell me as a kid I hope you dont get em, and I said me too. Well I got em and I hate em even in acceptance of the fact, I do not have to like it. SOOOO glad you are here. I hope to hear from you soon. bholtson@qwest.net

Title: Re: diagnosis
Post by domm on Sep 22^nd, 2002, 6:32pm

Bill and Rusty - welcome to the board. Two suggestions - first read, read, read. this site and the OUCH site have outstanding info on CH and their treatment options. Second - print this stuff out and take it to your doc. Oxygen and Imitrex are the abortives that work for me and many others. Then there's a host of preventatives that also stop them. Verapamil is working for me, but it doesn't work for everyone.
sorry your felt compelled to seek us out, but glad you did
good luck in finding the right doc and set of meds
domm

Title: Re: diagnosis
Post by Charlie on Sep 22^nd, 2002, 9:21pm

Welcome Bill:

Glad you found this place. I've learned more about clusters from these dopes than I thought possible. You'll find something here that will at least make these things more manageable.

I know the feeling about a diagnosis. We all think it's about over when the beast first rears his ugly head. I was ready for a stroke or tumor. As I see neurologists all the time for my epilepsy, my doctor diagnosed it in about 5 minutes. Dr. Wright had a pamphlet on his desk with an illustration of a man in the throes of CH. He told me that it was tough to treat but he put me on Ergotamine which for me didn't work. Finally, I had some success with the beta-blocker: Inderal. For me, this helped after a time. He also gave me this technique which allowed me to get back to a normal life. Give it a try and the following is more than I learned from the doctor:

Dr. Wright's Circulatory Feedback:

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: diagnosis
Post by Rusty on Sep 22^nd, 2002, 10:39pm

Thanks folks for the advice. I will read more on the boards and check out the teeth posts! It's helps to know that there are people who understand the how debilitating the pain is. Thank the lord it is usually gone in 45 minutes or so.