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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> MY NEUROLOGIST JUST FIRED ME!
        
(Message started by: hurtinunit on Jun 8^th, 2005, 6:20pm)

Title: MY NEUROLOGIST JUST FIRED ME!
Post by hurtinunit on Jun 8^th, 2005, 6:20pm

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!

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by yikes-another-one on Jun 8^th, 2005, 6:48pm

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!!!!!!!

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by hurtinunit on Jun 8^th, 2005, 6:56pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by Jonny on Jun 8^th, 2005, 7:00pm

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 ;;D

..............jonny....on the south shore of mass

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by Svenn on Jun 8^th, 2005, 7:10pm

on 06/08/05 at 19:00:33, Jonny wrote:

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 ;;D ;;D 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"

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by vig on Jun 8^th, 2005, 7:45pm

I'm with Jonny, go find a new doc, some of them are actually good, not all of them, but a few... keep looking
;)

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by Kris_in_SJ on Jun 8^th, 2005, 8:41pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by cazman on Jun 8^th, 2005, 9:26pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by E-Double on Jun 8^th, 2005, 10:02pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by burnt-toast on Jun 9^th, 2005, 2:28am

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by bnfreeman on Jun 9^th, 2005, 11:29am

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by lionsound on Jun 9^th, 2005, 5:38pm

on 06/08/05 at 18:20:17, 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.

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by sandie99 on Jun 10^th, 2005, 2:45am

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by BarbaraD on Jun 11^th, 2005, 7:39am

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by snook on Jun 15^th, 2005, 6:02pm

:) ;) 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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by ClusterChuck on Jun 15^th, 2005, 6:15pm

on 06/08/05 at 18:20:17, 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.

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by LeLimey on Jun 15^th, 2005, 6:24pm

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!

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by purpleydog on Jun 17^th, 2005, 3:05am

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.

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by jcmquix on Jun 17^th, 2005, 11:20am

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. :o

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by cheNY on Jun 18^th, 2005, 8:21am

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.......

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by clusterkat on Jun 20^th, 2005, 1:48pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by Leggs on Jun 26^th, 2005, 10:02pm

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....

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by duerrs on Jul 12^th, 2005, 6:50pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by lmarkins on Jul 16^th, 2005, 3:38pm

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. :P 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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by hurtinunit on Jul 25^th, 2005, 4:54pm

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

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by brainfreeze on Jul 29^th, 2005, 4:04pm

I had my first neurologist fire me too after my third visit with him. I received a letter in the mail stating we couldn't have a doctor/patient relationship since I was infuriated at the fact that he couldn't understand what 'pain' was.
I found a better neuro after that. I pray that no other CH sufferer goes to him.

Title: Re: MY NEUROLOGIST JUST FIRED ME!
Post by kayarr on Sep 1^st, 2005, 10:59pm

on 06/08/05 at 19:00:33, Jonny wrote:

Sir, if you have a secret to getting O2 Please share. We moved and the oxygen service was horrible about wanting a prescription. Grrrrrrrrrrrr!!!! Took me three freakin' weeks to get something done. I was fuming!
So to save my breathe if there is a next time please do tell:)