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Topic: MY NEUROLOGIST JUST FIRED ME! (Read 1372 times) |
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hurtinunit
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MY NEUROLOGIST JUST FIRED ME!
« on: Jun 8th, 2005, 6:20pm » |
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hey new to the board but have been reading posts for a few weeks. Im in the 7'th week of my first cluster cycle.
Anyway i went to this neurologist, first he put me on verapamil, had to stop my blood pressure was always low to begin with and on the verap made me almost a corpse, so then he says he doesnt know what else to do so he'll put me on depakote, and if that dont work he says he has to send me to Boston. After doing tons of research I called him to ask about elavil , so he finally calls me back and as soon as he finds out i havent started the depakote yet he starts getting a major attitude and saying if i want to be my own doctor i don't need him and theres nothing left for him to try,etc. etc. and hangs up on me. He seemed fine before that even though he never suggested oxygen or anything else abortive. What the hey!
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yikes-another-one
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #1 on: Jun 8th, 2005, 6:48pm » |
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I just had to fire mine.
he didn't want to give me alternative abort .
He gave me 2 tiny Nasal spray samples...that was all
about 2 months ago.
So yeah, I horded them, labored through
a few tough 7 and 8 level headaches.
Finally I couldn't put it off and used one.
within 5 minutes I was puking at my sink.
Raging because the pain was even worse....
when I called him and said the Nasal spray woulnd't work for me.... he said, well then I guess you have to go to the E.R. if it gets worse....
um, hello. Waste of time.
So I fired him.
Sometimes you gotta search out someone where your personalities mesh better. It is about trust,
and maybe your "ex-doc" wanted you to trust more.
No sweat, dial the next one, and don't waste any time.
Best wishes for PFdan!!!!!!!
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hurtinunit
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #2 on: Jun 8th, 2005, 6:56pm » |
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thanks for replying, dint want to start the depakote yet because i was starting a new job and wanted to make sure i could be there in the am after all the side effects i heard about, the least thing he could have done was give me something been in pain for almost 8 weeks straight anyhoo have an appointment with a nother neuro-in 2 weeks want some relief
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Jonny
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #3 on: Jun 8th, 2005, 7:00pm » |
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Get a new Doc...if he wants to play God he aint helping you....just his own ego.....Fuck him!!!!
If you need help getting 02 let me know......you never NEED a script for it 
..............jonny....on the south shore of mass
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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The mad viking
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #4 on: Jun 8th, 2005, 7:10pm » |
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on Jun 8th, 2005, 7:00pm, Jonny wrote:Get a new Doc...if he wants to play God he aint helping you....just his own ego.....Fuck him!!!!
If you need help getting 02 let me know......you never NEED a script for it
..............jonny....on the south shore of mass |
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hurtinunit
You take contact with Jonny.He can help you
Just a warning before you meet face to face..With that long hair that Jonny has he looks like Lucifer BUT i can promise you 1 thing.
Jonny has the biggest heart of GOLD that i know of.and THATS a PROMISE
Svenn aka "The Mad Viking"
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Always Look on The Bright Side of Life
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vig
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #5 on: Jun 8th, 2005, 7:45pm » |
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I'm with Jonny, go find a new doc, some of them are actually good, not all of them, but a few... keep looking
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Kris_in_SJ
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #6 on: Jun 8th, 2005, 8:41pm » |
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Hi,
A couple of questions ...
How do you know you're in your first cluster cycle? Who diagnosed you? What abortives are you using - Trex, Oxygen, etc.?
I only ask because it took several cycles for me to get diagnosed. The first one was a blow-off since by the time I had the CAT Scan and MRI, my cycle was nearly over.
If you've been definitely diagnosed as a clusterhead, I'd agree with the guys above - get another doc - preferably one who specializes in clusters. At the very least, you need a good abortive like O2 or Trex to get you through the bad ones. With any luck, you'll also get one with a halfway decent "bedside manner." In fact, sometimes, if your own education on the subject is thorough, an understanding and educated GP is all you need.
Read, read, read - but never let the doc know that YOU know more than him/her. Be an advocate, not an antagonist, if you know what I mean.
PF Wishes,
Kris
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cazman
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #7 on: Jun 8th, 2005, 9:26pm » |
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oxygen is one i have not tried , how do you get it without s script thats the only reason i havent tried it, no insurance and now no job , im in week 1 of what is usually 6-8 week cycle
sothern new hampshire
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E-Double
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #8 on: Jun 8th, 2005, 10:02pm » |
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This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
Good luck and stay strong!
E
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burnt-toast
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #9 on: Jun 9th, 2005, 2:28am » |
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The most important thing is to find a neurologist that specializes in headaches and IS treating Cluster patients. It is more common than you think for doctors and neurologists to have never treated a Cluster patient.
Ask a lot of questions, INTERVIEW them. Most neurologists that treat Cluster patents understand the pain we go through and how frustrated patients can be with some neurologists and treatments.
I suffered for two years before firing my family doctor and neurologist for not accepting research on cluster headaches that I was providing them.
Don't expect miracles, clusters are usually a lifelong affliction (although miracles do happen), but a neurologist that understands Cluster Headaches will most likely improve your situation by working with you to find effective therapys.
Sorry to hear you have joined the team. Best wishes on your journey.
Tom
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bnfreeman
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #10 on: Jun 9th, 2005, 11:29am » |
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I have fired a few doctors and had a few fire me. The worst doctor was a neurologist who was treating me for migraines and said my "stress" was to blame. She wanted to send me to physical therapy. At $170.00 for one visit I said no. They wanted me to come 3 times a week. I found a great GP who I could talk to and most importantly who listened! He pumped me full of painkillers and imitrex and helped me find a great Headache Specialist. I think any doctor who takes offense to you making suggestions is a bad doctor. You know how you feel and whats going on and they should listen. Don't take offense if they don't see you. Go "hire" a new one. Good luck and best wishes.
Brandi
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lionsound
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #11 on: Jun 9th, 2005, 5:38pm » |
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on Jun 8th, 2005, 6:20pm, hurtinunit wrote:| if i want to be my own doctor i don't need him and theres nothing left for him to try,etc. etc. and hangs up on me. |
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he's right about one thing ..... you DON't need him!
and there may be nothing left for him to try, but you are an informed, smart person and you knoww there is plenty left for YOU to try.
I hate it when doc's say things like that. One neuro once told me there was not much he could do do help me. (so why was I there then?) I never went back.
Now i go to NECH in CT and my HA specialist likes the fact that I am informed.
You can and will find a better doctor...remember you are in charge...they work for you...and with you!
Be well and PF!
-lionsound
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sandie99
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #12 on: Jun 10th, 2005, 2:45am » |
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I've met 5 neuros and 2 of them had terrible egos. The rest were bunch of wonderful people, who did their best to help me find the best cure for me. Remember that not all neuros know that much about ch. So read up as much as you can. And take your time, you'll find the right med, also! 
Good luck!
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
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BarbaraD
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #13 on: Jun 11th, 2005, 7:39am » |
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Go to the left. There's a place where people have posted "recommended docs". These are the ones we've had experience with and know they know about ch.
Don't get discouraged -- I went through some of the best known "experts" in Texas before I landed a neuro who actually knew what a ch was. Been with him going on 10 years now and he's still "learning" just like the rest of us. He actually does his research along with what I bring him. Usually if I mention something new, he's already heard about it.
Hang in there -- there's a neuro out there who can work with you -- just have to find him/her.
Hugs BD
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snook
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #14 on: Jun 15th, 2005, 6:02pm » |
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hey, I just wanted to comment on the fact that these doctors WORK FOR US WE HIRE THEM, I THINK THEY HAVE LOST ALL SENCE OF THAT GOOD LUCK SNOOK
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ClusterChuck
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #15 on: Jun 15th, 2005, 6:15pm » |
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on Jun 8th, 2005, 6:20pm, hurtinunit wrote:| he starts getting a major attitude and saying if i want to be my own doctor i don't need him and theres nothing left for him to try,etc. etc. and hangs up on me. |
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Sounds like he did you a favor. You don't need him! With some of these doctors, the "phd" stands for "piled higher and deeper" .. Get one that works with you. One that is not afraid to learn something new, even if it is from a patient! They are out there.
Chuck
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LeLimey
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #16 on: Jun 15th, 2005, 6:24pm » |
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I had the same attitude on Monday from the paediatric neuro that my 3 yr old is seeing. He has refused to see my son anymore because I had the audacity to want a second opinion (after he said he didn't know how to treat CH in kids I hasten to add!)
I feel we are better off with no neuro than with a shitty one but its taken me two solid days of tears to realise that.
Read up on the meds here, you will see what are most commonly effective for people and what are not.. and once you have that in your mind you will see that being without that butthole is NOT the worst thing in the world! Good luck with finding a doctor with more talent than ego!
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purpleydog
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #17 on: Jun 17th, 2005, 3:05am » |
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If this doc has that attitude, you don't need him. There are plenty of other neuro's and the best thing to do is to interview them. When you call the office, ask them if the doc treats cluster headaches, and if has has many patients.
I had a neuro give up on me once, and I didn't know what to think. He told me he tried everything he knew, and I wasn't responding. I've seen lot's of neuro's, and the one I'm seeing now knows CH and is working with me to treat them.
There is a lot of info to the left here. Print it out and take it to your neuro. If he doesn't want to listen, then that doc isn't for you.
Don't give up, there is a good doc out there for you.
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jcmquix
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #18 on: Jun 17th, 2005, 11:20am » |
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Hey I think Dr’s are a great thing, but something I was told a long time ago stuck with me.
A Plumber has a Plumber’s License, an Electrician has Electrician License.
All a Doctor has is a License to PRACTICE medicine, PRACTICE being they key point.
Almost every doctor I ever seen here in Florida told me “Its just the weather down here”, bull—it.
Then about 5 years ago, I had a young Doctor, and he told me I had CH, He even admitted that he had read about them in medical books, but never seen anyone with actual CH. Well on my second visit to his office, I was hit with a good one, he tried everything O2 (I know now he did it wrong), He was calling all the other Doctor’s in the office in while I was suffering, but asked me to understand, that none of them had ever seen an actual attack. But finally he came in an Introduced me to Trex (Injection).
But just find another Doctor, they are like A—holes, everyone has one, some are better than others. 
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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cheNY
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #19 on: Jun 18th, 2005, 8:21am » |
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Through my 10+ yr relationship with CH's, I have gone through
many doctors, none stand out. I have found that I know more about headaches than they do. To have the most success with a physician & headaches is to go to their nuclei, pain/ headache centers. Many cities have them, they seem to be the most up to date. Ultimately you need a physician relationship to get scripts. You have to find a sympathetic one, and one that will not question your requests too much. Good luck. It does get better.......
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clusterkat
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #20 on: Jun 20th, 2005, 1:48pm » |
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ive been a cluster-head for two years, dismissed two of the six M D's ive gone through, some do seem a bit threated by online information.
it took me a year to get a great doc, she's female & open to anything for treatment, every appoinment im always bringin in info to educate us both.
good luck w/ your searching,
half the battle is knowing what or who wont work.
^kat
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Leggs
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #21 on: Jun 26th, 2005, 10:02pm » |
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Wow, do I have to read through this entire topic tomorrow....So many of the things said about neurologists, GGGGRRRRRR totally tick me off, make me so angry. I am so tired, can't read another word..........zzzzzzzzzzzzzzzzz Okay, everyone, let's go to sleep tonight, those of us who can, and dream up some voodoo curse or something wishing CH on all the boobs who have treated us and not known what they are doing, and eternal life in paradise for the ones who GET IT and help, or at least die trying....
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duerrs
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #22 on: Jul 12th, 2005, 6:50pm » |
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i didn't know you could get o2 without a scrip. is it expensive? My medical benefits changed and imitrex now costs me a fortune, 5 days used to cost me 25 dollars, same thing now costs me 150. thanks aetna insurance
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lmarkins
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #23 on: Jul 16th, 2005, 3:38pm » |
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Hi all,
I've been a sufferer all my life (45 years).There's a guy in Wellesly Hills, Ma that supposed to be tops. His name is Egilius Spierings. My CH's started again today after a 3 year remission.  The last cycle lasted 2-1/2 months. I will be calling him on monday. HurtinUnit, you may want to give him a call.
www.headachemd.com
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hurtinunit
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Re: MY NEUROLOGIST JUST FIRED ME!
« Reply #24 on: Jul 25th, 2005, 4:54pm » |
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your right about him he is supposed to be the best just so happens i called him hes not taking new patients but im going to Lahey clinic they are also good try them if you cant get other doc
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