chronicclusterheadaches.co.uk

Jill · Posted: Fri May 15, 2009 6:06 am Post subject: Doctors

Hi everyone,

I wanted to see if anyone had some thoughts on this... and if not that is fine too.

I went to see my doctor here last week because I needed my medications refilled which should have been an easy task. However, I have a newer (young) doctor here now and she did not want to give me a new script for my pain meds and has some other ideas on what to do with the headaches.

She has decided that she wants me to try some medications and then maybe see a neurologist here. At first she wanted to give me naproxin which is really nothing and after consulting with a colleague decided to give me maxalt. I got six maxalt and am able to use them twice a day - I get more headaches than that! And six were supposed to get me through almost two weeks!

I do not want to go this route with trying medications again and all of this. I have been to SO many of the best neurologists, have tried all of the medications and some of them more than once and they have told me that my best bet is to manage the pain right now. I have accepted that.

I did tell this new doctor that I wanted to try the Sandomigran but she did not prescribe it.. not sure why. I came home and talked to Marty some and we both agreed that seeing a neuro here is not going to do much and I cannot deal with more headaches and all that. I am doing okay right now with managing.. it is hard to explain but it is harder to manage when you have retry medications and get that frustration, disappointment and all going.

So my question to you all is, how do I explain that to her? She does not know about CH nor does her colleague because they told me that people do not get them for seven years straight!

Do you ever get to the point where you get tired of trying different medications and having them fail? That makes me more depressed than having the headaches sometimes... it is just hard to take. I hate that I am on pain meds but they are working and I am very hesitant to stop what is actually working and go through all of this.

Am I crazy? Or more so than usual? I just wanted to know what you all thought..

Thanks
Jill
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What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Ike · Posted: Mon May 18, 2009 9:17 am Post subject:

I know how you feel about going through it all again, But for me personaly i will always try new things and keep seeing the neuros because one day they will find whats right for me ! well i hope so. But if you feel strongly about it either tell her/him how you feel or go once to the neuro and explain it all to him

im tired and moody thats about the best i have right now lol
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If you dance with the devil the devil don't change, The devil changes you

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Jill · Posted: Tue May 19, 2009 5:13 am Post subject:

You are just fine Ike!

I have a hard time believing that the neuro will find something one day but that is just me. I am not pessimistic but I am so tired of getting my hopes up for something to work and then crashing when it does not.

I do not mind trying new medications but how many times can you try the same ones?

I am not sure how to put this exactly. It is not that I do not want to try but it is just that.. I am afraid to maybe. I have something that allows me to function right now and it has taken me a long time to get where I am right now. Is it perfect? Not by a long shot but is it better than a year ago? Hell yes!

I am not sure what exactly will happen. The doctor is supposed to call me today and we will see.

Thanks so much Ike and you were not moody! :)

Much love
Jill
_________________
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

Annette · Posted: Wed May 20, 2009 3:59 am Post subject:

Young doctors tend to be like that. They mean well but they lack the experience to know the limit of their knowledge.

The easiest way is to ask her how many patients with cluster headaches has she treated and what sort of success she has had with them. This will make her realise she does not have enough experience when it comes to this very rare condition.

Secondly print out the latest information and articles on CH and ask her if she had read any of them.

If she wants to refer you to a neuro thats fine but making sure that he is experienced with headaches and CH and is not just a general neurologist.

Sherri · Posted: Wed Sep 16, 2009 6:24 pm Post subject:

Jill,

I tell my GP, that with all due respect, what he says doesn't matter...he's left me to suffer many times.

Oh...and my neuro did the same thing to me about 2 mos ago, when I was going through hell. He gave me THREE sublingual Maxalt, and ONE time released Maxalt, and acted as if he gave me 100. He also answered his personal cell phone, and got in an argument with a female, which I thought was his wife, but it kind of didntn sound like a husband wife relationship and he told me the call was "Really important" It wasnt at all important, they argued...it was assanine and very unprofessional-I felt more than a little awkard sitting there hearing the entire conversation, and I had waited for that appt for awhile. I was really bummed out afterwards, I actually stood up and left, I could tell he couldnt wait to get me out of his office to get back to his phone call.

I ADORED my neuro.....and personally, I too have had it with being put on meds over and over and over that I have tried so many times....I prefer a Dr. that's like 60 or 70 yrs. old....Im sorry about ur frustration, and to me, sounds like the Dr. was out of line...WE know more than most of them....if possible, maybe you can find a new Dr.? About a month ago, my Dr. had me in tears :smt022 at the things he said to me...so I have been slowly looking You don't deserve to be tallked to nor treated that way, youve been through enough.

Good Luck

_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Jill · Posted: Thu Sep 17, 2009 3:03 am Post subject:

Thanks...

I managed to get it straightened out and now she prescribes pain meds and refills them without me having to go in.

I had a copy of all of my records from my general doctor in the US and also made a list of all the medications that I had tried. Between that and the surgeries I had, I think that she thought that I had had enough!

So she will keep me on my treatment for now and adjust if we need to later, no problems.

I have had my share of doctor problems in the past as well, one told me that I had smoked weed because my eyes were dilated and I have never smoked weed. Plus the others that do not want to be bothered, tell me it is me or tell me to take two aspirin and drink a mountain dew because that works for all of his CH patients. I don't think so!

I hope that you find another doctor soon, how has your head been by the way?

Thanks and hugs
Jill
_________________
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson

phil h · Posted: Thu Sep 17, 2009 3:46 am Post subject:

Battle on dear ...... quality of life gets lost on these MD's at times ....... You must be your own advocate .... keep an open mind to any new therapies........ but don't stop what helps....

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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Sherri · Posted: Thu Sep 17, 2009 12:39 pm Post subject:

Jill...Im glad you got THAT straigthened out. It's reallyjhell when you go through that. At the time I went to my neuro, it was a time that I thought maybe something new had developed it was so, so bad.

I was getting hit so intensely and nearly wth no break in between. I'd have a ten, then I'd feel it start to subside, and start thanking God...right as I was...I'd feel the pain in my shoulder radiating up to my neck, and you know the rest. I'd start all over again, like one continual hit. This went on for a few months. I started to feel like there was no was out.

I was so disillusioned by my neuro...the way he treated me....at one point during the ten min appt, I started waving my hands and saying his name to stop his nonsensical rambling...it was as if he forgot my entire case. I was so disillusioned by that appt. I thought he was the greatest before that...he spent half the time on the cell phone and actually talking to
me about his personal life while I was sitting there suicidal.

My GP, who is not only his associate, but friend seemed to turn just as bad, I felt like I was in a parallel universe.

Im glad you got that handled...hope things are at least a little more manageaable...

My head is normal for me....better than that time periond. Though no one, meaning my Drs took it seriously. I was begging them to help me.

Phil is right but he can suck it anyway.

Never give up aren't they the famous words?

Maddening but true. I just don't like being left for dead...or hanging. Im so glad your Dr got some clarity about you.

Love Ya.
_________________
"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.