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What a waste of time (Read 9117 times)
maz
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Re: What a waste of time
Reply #25 - Feb 4th, 2014 at 4:17am
 
Hi Hoppy,
Well I didn't go to bed till 1am and I took an imigran tablet,and slept all night. Woke up at 8.15 with a k6, but it only lasted 15 mins and they are normally 45 mins. So thats a huge improvement.
What you describe as twinges sound like what I have been calling a k3, or a little one, and I have loads of those. I sometimes even get them when I'm not in a proper cycle, and haven't been taking any meds. I had lots when I was away on my recent holiday, but had 3 bigger ones that I had to abort. They were so random though that it wasn't a proper cycle. I think it was all down to the holiday it's self, the heat, flying, jet lag, excercise etc. So, holidays are a trigger for me - bugger!!!
What ever you call them, If the little ones are a consequence of getting rid of the big ones, thats ok with me.
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AussieBrian
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Re: What a waste of time
Reply #26 - Feb 4th, 2014 at 4:37am
 
At least when you get hit in company, Maz, you have the decency to do it prettily.

I doubt the same could be said for the likes of me.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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maz
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Re: What a waste of time
Reply #27 - Feb 4th, 2014 at 5:04am
 
Good morning Brian
I'm glad I didn't show myself up too badly. It was only a k6 and I can usually control myself for those. 7 or above and you would have seen the devil in me.
But "pretty" ?  Thats a real stretch of the imagination.
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Hoppy
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Re: What a waste of time
Reply #28 - Feb 4th, 2014 at 6:15am
 
Hi Maz,
That is good news. From what i have read, you can get
up to 5hrs sleep, without the beast paying you a visit.
So i've got my fingers x you can keep getting 7hrs.

Hoppy.
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BarbaraD
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Re: What a waste of time
Reply #29 - Feb 4th, 2014 at 6:32am
 
Don't they have some kind of REVIEW board there. I know here the VA "appoints" doctors, but if you get ticked off at them or they don't do their job there is a way of firing them and getting a new one. And you can do that until you get one you can work with.

You might check into that. And if you have a good relationship with your GP you need to tell him/her that this guy was a nut case and didn't know anything about YOU.

But if you don't stand up for yourself - you're gonna suffer. Good luck..  Kiss
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Torturedminds
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Re: What a waste of time
Reply #30 - Feb 10th, 2014 at 3:17am
 
My doctor has ha d field day with my ch. I was the first he has ever met with these. So after my first appointment he calls me from his personal cell phone saying "so would it be ok if I bought you lunch and you tell me more about these headaches?" We went out for 2 hrs  and after almost a whole notebook full of info to another appointment the next day wanting to induce one for research, at least he's trying to make an effort for our sake! Lol
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Callico
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Re: What a waste of time
Reply #31 - Feb 11th, 2014 at 6:21pm
 
Torturedminds, that is great!  Not so sure about the induced HA part of it, but I'm glad you have a Dr with an open, inquiring mind!  If we had a few more of those around perhaps we wouldn't have such a bad attitude toward Dr's around here.

I know a few around here have had great experiences with their Dr's, and I absolutely love my Neuro now, but I went through several before him who were worse than useless, and one who definitely should have her license rescinded.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
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goldenlady
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Re: What a waste of time
Reply #32 - Feb 11th, 2014 at 7:07pm
 
I am a 52 year old female who has clusters.  I had migraines beginning at age 7, by the time I was 23-24 I began having clusters.  Yes they say men normally get them but we get them too.  I have run across many doctors who don't have a clue, keep searching and get them to prescribe you oxygen.  I am going through a series during this time, I am so exhausted from the lack of sleep from waking up every hour, tonight I am trying melatonin to try to assist me...keeping my fingers cross for sleep.  Good luck with your search for an understanding doctor.
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maz
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Re: What a waste of time
Reply #33 - Apr 2nd, 2015 at 9:34am
 
Bumped again to recap
Fast forward 15 months.
After the neuro cancelled  my appointment 3 times I finally got there today,and I went in full of dread. All the appointments were running almost an hour late again, but eventually I got called in, and it was a different doctor.A woman.

The first thing I said to her was "I have cluster headaches, but doctor ****** says women don't have them, but I know I do". She seemed astonished.

I told her all my symptoms, meds etc. and she agreed instantly that it's CH.  She understood how rediculous the word "headache" is, she understood how frustrating all the irritating silly responses are, She understood the desperation, feeling of hopelessness, and most of all she understood the pain. Hearing the way my cycles happen, and the way I have a single "one off" attack in the middle of remissions, she thinks I have gone chronic. I told her I feel I have it under control with sumatriptan injections and 02.

She told me she often does some teaching and uses you tube videos of people having a CH to make her students understand that this is not a condition than can be lived with. She makes them watch it all and tells them that without treatment suicide is the only option that some sufferers can see.

We talked about all the meds, oxygen, correct mask, body clock,lack of sleep etc - absolutely everything connected with CH.

At last - a doctor who speaks my language !!! I aked if I could be transferred to her list as I don't have any confidence in doctor ****** and SHE SAID YES !!!

As it's under control she has actually discharged me, but said if I need help I can phone her department at any time in the future,  and she will call me back by the end of the day.

I left her office feeling like the weight of the world had been lifted off my shoulders.



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Peter510
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Re: What a waste of time
Reply #34 - Apr 2nd, 2015 at 9:43am
 
Maz,

Great news. Hopefully it will lead to better and better things.

Peter.
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Mike NZ
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Re: What a waste of time
Reply #35 - Apr 2nd, 2015 at 3:57pm
 
Great news Maz that you finally got the confirmed diagnosis from what sounds like to be a really enlightened doctor that isn't just doing good work with patients but is also training the next generation of doctors so that less people will have to go through the kind of experience that you have had to go through with things like "women don't get CH".
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Callico
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Re: What a waste of time
Reply #36 - Apr 2nd, 2015 at 8:36pm
 
Wonderful news!  You actually got a doctor.  Before, you only had an educated idiot with a degree, who cared nothing about his patients.  I love it when I hear someone gets a doctor like this. 

My own Neuro is not a CH expert.  He specializes in muscular issues from MS, etc.  The only reason I have him is because my wife has MS, and he treats her.  Linda asked him if he would prescribe O2 for me, and he agreed.  Since then I've started seeing him, because he sees his purpose being to prevent me from doing something that will harm myself.  He readily admits I know more about CH than does he, and he frequently brings his students in to meet me and learn.  Love the guy!  He frequently will read up on a trial or something to see if he can help.  There's a very good chance he will attend the Clusterbusters convention in Sept in Chicago. 

Again, I'm so glad you actually found one who knows what it means to doctor, even if wimmenz don't get CH!   Wink

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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BarbaraD
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Re: What a waste of time
Reply #37 - Apr 3rd, 2015 at 12:57pm
 
That's great... I'm doing a happy dance for you. Getting a good neuro is a BIG STEP..

I've been lucky to have a great one for the past 20 or so years.. He always asks, "What's new in clusters?" And he checks our board when he has the time. And he "listens" to any new treatments we come up with (like the Vit. D3).

I wish you PF days and a great relationship with your new neuro.  Kiss
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KariBjorn
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Re: What a waste of time
Reply #38 - Apr 10th, 2015 at 10:42am
 
Quote:
I took a young couple out in my boat recently, it was actually called mates day, where we offer our boats to take a disabled person and there carer fishing for a few hours. now it could be anyone of any age, with a physical or mental disability, great day, over 200 disabled with there carers and 180 private boaties giving up their time.
sorry, I had to set the scene.
my allocated disabled person was an amputee with his partner as carer, he suffered a horrible accident and lost an arm, they were both 24 to 25 years old.
turns out she was a 5th year medical student/doctor
whilst fishing she was discussing her job and bought up migrains  and I said to her, I suffer from cluster headaches, do you know what they are, she absolutely not only new about them but started discussing 02 and different preventatives and said that they spent quite a bit of time on neurological issues including all types of headaches.
it was actually great to have a discussion with someone that new about clusters, yet alone a young doctor in training understanding the differences between clusters and migraines.
seems they have ramped up the training on clusters in the curriculum, as my wifes uncle who is a doctor said 40 years ago it got a 10 minute mention.....

colin


Agree with you 100%, talked recently with a recently graduated doctor and she recognized most of the symptoms and knew it was nothing like migraines, knew about a few cases and how disabling it can be to have CH.

But on the discussion, I really feel for you Maz, that's totally unacceptable treatment. I feel many doctors aren't willing to actually listen to your own research and group all "self-researched" patients into the same group that just goes to google and applies the first page with what they might have.

Then again, doctors are people too and they are all different just like us. Just sucks that you ended up with an idiot
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