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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new to clusterheads, but not new to clusters
        
(Message started by: markeydsl on Oct 29^th, 2004, 9:31am)

Title: new to clusterheads, but not new to clusters
Post by markeydsl on Oct 29^th, 2004, 9:31am

Hello, I have been a long time sufferer of clusterheadaches, total 27 years and this last year has been the first time that they have gone to chronic. it has been the worst part of this experience. I always thought they were bad before, but this is the worst, at least in the past I could expect that sometime in the future I would get some releif. I Have been treated by all kinds of doctors over the years, and have gone back to my pcp as everyone else is doing the same thing, however recently my pcp told me that he thinks this awful pain that I experience, that makes my nose run, makes me bang my head against the wall and scream and cry is just a regular headache, because it does not respond to migraine medications. as you can probably understand, this is of great frustration to me because he will not refer me to a neurologist because he thinks he can treat this, as he calls it, a normal headache. Hopefully you all have been able to find a doc that is understanding and knowledgeble, however be aware that as I have found there are docs out there who insist that cluster headaches are not as serious as we think they are. Thank goodness we have options, I am in the process of finding a new pcp to refer me to a neurologist, but this does mean that I have to start at number 1 again.

it is great to find this website. I did not know that there were so many people out there that had this problem that I have had for so many years. I was beginning to think I was alone because my doc's have never mentioned treating anyone else or websites, or documentation.

Title: Re: new to clusterheads, but not new to clusters
Post by Valerie on Oct 29^th, 2004, 10:20am

Sorry you're not getting help.

What migraine meds has the pcp put you on? Maybe the ones he's given you aren't good for clusters. The best one for most ch's is imitrex injections. Has he given you any preventatives?

I think it's a bunch of crap that he won't refer you to a neuro - I would demand it. Print some info here on ch and bring it to him. Have you taken the cluster ha quiz on the left? A proper diagnosis is critical to treatment.

Good luck!

Valerie

Title: Re: new to clusterheads, but not new to clusters
Post by Ruth on Oct 29^th, 2004, 10:51am

I think we all think that we are alone at some point in time because most people we run into don't have clusters and don't understand them, this is a great site that you have found.
You get yourself to a good Dr. maybe someone on this site in your area can suggest someone. That is how I found mine and she is great.
Good luck and we are hear for you
Ruth

Title: Re: new to clusterheads, but not new to clusters
Post by nani on Oct 29^th, 2004, 12:36pm

Welcome and I'm sorry you are here. Change PCPs as quickly as you can. Look at the links on the left and print them to take to your new dr.

Title: Re: new to clusterheads, but not new to clusters
Post by markeydsl on Oct 29^th, 2004, 2:29pm

Oh, you guys are so wonderful. I really love the input. yea I am one of those wierd clusterheads, that don't respond to much. O2 works the best, but that does not keep them at bay, it only helps with the current headache. I think printing the documentation from the doctors on the left is what I will do and take that to him, he just does not know what he is talking about. I used to have a great doc, but when My insurance changed, so did the providers. I still think I need to change PCPs as this one just does not listen to anything. He thinks that my droopy eye must be something other than as a result of the repeated attacks from these headaches and says that they could not possibly cause a droopy eye. I guess he needs to be informed. :-/

Title: Re: new to clusterheads, but not new to clusters
Post by mynm156 on Oct 30^th, 2004, 5:20pm

Welcome! I am sorry to hear that you are one of us.

Good Vibes

MYNM156

Title: Re: new to clusterheads, but not new to clusters
Post by thebbz on Nov 1^st, 2004, 8:10pm

This is my personal opinion:Fire the arrogant Dr. not a very nice person!! Get to the neuro. All the best to ya and yep,been there done that. Fired him. Stay in the fight.
8)
BB

Title: Re: new to clusterheads, but not new to clusters
Post by writer on Nov 2^nd, 2004, 12:02pm

I agree--fire that doctor.

Before doing so, tell him you found out your "droopy eye" is a Horner's syndrome (which he should have learned about in medical school, probably).

Much luck and pain-free times,

Barbara