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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
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EEG ?
Nov 1^st, 2011 at 11:02pm

Went to a neurologist 12 yrs ago and confirmed CH diagnosis.

Now 12 yrs later, scheduled an appointment with the same neurologist for med prescription, doctors note for work, maybe some bloodwork, etc.

Appointment desk says an EEG will be required at visit.

Why is this required if already diagnosed w/ CH's?

No history of epilepsy, brain damage, etc and have already been diagnosed w/ CH's.

An EEG does not necessarily pinpoint the exact problem that might be causing a headache.

I have no insurance and will be paying cash for this visit which is expensive as it is. Certainly don't need to be nickel and dimed for this unnecessary and expensive EEG test.

Seems like a potential $ racket at the neurologist office and am skeptical of appointment. Thoughts?

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: EEG ? Reply #1 - Nov 2^nd, 2011 at 7:23am 1) Covering his ass from malpractice lawsuits or 2) Losing $ due to Obamacare and needs to make up for it elseware.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: EEG ? Reply #2 - Nov 2^nd, 2011 at 7:37am Is this the same neurologist who diagnosed you, or a new one? The EEG seems a waste of time and money. Can you question the test since you have a diagnosis? lance
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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: EEG ?
Reply #3 - Nov 2^nd, 2011 at 7:46am

Plain and simple, I will refuse the EEG as it is not required.

I have a feeling I will be educating the neurologist. Just letting him know why I am there and what I need as simply put as I can.

Looking forward to them asking me to rate my pain on a scale of 1 to 10. I will ask to see their scale. I will then let them know that their scale does not apply to CH's and ask if they would like to see the scale used for CH's, showing them our KIP scale.

Just aborted my third KIP 8/9 in the past 6 hours so called sleep, not in a pleasant mood.

Neurologist appt is in 5 hours.

I self diagnosed myself thanks to this site back in 1999 after suffering since 1979.

This neurologist I am referring to confirmed my CH diagnosis 12 yrs ago back in 1999.

Other than to cover his ass (which I would be eager and willing to sign a disclaimer declining test) or waste my $....what benefit could there possibly be to have an EEG test for CH's?

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« Last Edit: Nov 2^nd, 2011 at 7:55am by LasVegas »

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: EEG ? Reply #4 - Nov 2^nd, 2011 at 8:03am If you're Neuro doesn't understand CH, why waste your money on him. You'd do better to search around and find one that is familiar with CH. It'll save you $$$ in the long run. Good luck... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: EEG ?
Reply #5 - Nov 2^nd, 2011 at 8:07am

DennisM1045 wrote on Nov 2^nd, 2011 at 8:03am:

If you're Neuro doesn't understand CH, why waste your money on him. You'd do better to search around and find one that is familiar with CH. It'll save you $$$ in the long run.

Good luck...

-Dennis-

100% agreed. Honestly believe I opened up his mind to studying CH's back in 1999 and have sent him several Las Vegas CH'ers per my recommendation to be added to the OUCH list.

Think the lady on the phone who scheduled my appt was advising me of standard office protocol not realizing the history I have with this dr. Hoping that's the situation at least. Just really can't understand why an EEG for CH's in my situation with this SAME dr

Because if they are insistent about the EEG, I will unfortunately have to RUN out of his office instead of walk, lol, and of course retract his name from the recommended dr list I put him on with OUCH.

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« Last Edit: Nov 2^nd, 2011 at 8:11am by LasVegas »

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Bob Johnson

CH.com Alumnus

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: EEG ?
Reply #6 - Nov 2^nd, 2011 at 2:26pm

Going in with an attitude and expecting a sympathetic response??
====

Ital J Neurol Sci. 1996 Apr;17(2):179.
Generalized EEG abnormalities in cluster headache.
Silvestri R, Narbone MC, De Domenico P, Di Maria F, Raffaele M.
PMID:8797076[PubMed -

(Text/abstract not available. B.J.)
================================================================================
==

Curr Pain Headache Rep. 2009 Apr;13(2):155-9.
The electrophysiology of cluster headache.
Holle D, Obermann M, Katsarava Z.
SourceDepartment of Neurology, University of Duisburg-Essen, Hufelandstrasse 55, 45122 Essen, Germany. dagny.holle@uk-essen.de

Abstract
Cluster headache (CH) is a neurovascular headache disease characterized by recurrent, strictly unilateral, severe pain attacks. Despite its typical clinical features, including circadian rhythm of the attacks and ipsilateral autonomic dysfunction, the underlying pathophysiology of CH is still unclear. Electrophysiological data point to central disinhibition of the trigeminal nociceptive system as one of the key mechanisms of CH pain. Therefore, altered habituation pattern and changes within trigeminal-facial neuronal circuits due to central sensitization seem to be involved. One biochemical correlate is probably represented in dysfunctions of serotonergic raphe nuclei-hypothalamic pathways. Structural and functional imaging data show an alteration of hypothalamic structures in CH patients, supporting the hypothesis that the hypothalamus, according to its function as a circadian pacemaker, plays a pivotal role in CH pathology. Cortical and brainstem reflexes are reviewed to illuminate the pathophysiology of CH.

PMID:19272282[PubMed

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Bob Johnson

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: EEG ? Reply #7 - Nov 2^nd, 2011 at 3:01pm My current neuro told me that if I don't see him in a two-year time span, the insurance companies consider you a new patient again and they have to go through all the initial work-ups. Which is why he recommended seeing him once a year, even if I was in remission.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Lenny

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I love YaBB 1G - SP1!

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Los Angeles,CA
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Re: EEG ?
Reply #8 - Nov 2^nd, 2011 at 6:07pm

[/quote]

Because if they are insistent about the EEG, I will unfortunately have to RUN out of his office instead of walk, lol, and of course retract his name from the recommended dr list I put him on with OUCH.
[/quote]

Now if it were me (and of course it's not) it is you...and this doc insists on the eeg...i would look him straight in the eyes and insist that he checks your prostate (glove-less of course) and walk out after you wink at him with a straight face...gosh,i kind of feel like "dear abbey" after giving this priceless advice Cheesy

.....Lenny

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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: EEG ? Reply #9 - Nov 2^nd, 2011 at 7:22pm The dr was completely understanding about mot wanting the EEG. Told me the office mgr who scheduled the appt typically states that for all new patients, not realizing I was a former patient. No EEG required. Dr asked a few ?'s, I asked him a few ?'s, and left with everything I asked for. Good appt, dr will remain on recommended OUCH list
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: EEG ? Reply #10 - Nov 2^nd, 2011 at 10:54pm I've got an EEG tomorrow, although nothing to do with CHs (I'm taking part in a medical research project). But I'll ask the person doing it if they know of any link between CHs and what an EEG can show (I suspect they won't know of one). I'll follow this post up with the feedback.
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wimsey1

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MA
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Re: EEG ?
Reply #11 - Nov 3^rd, 2011 at 7:34am

LasVegas wrote on Nov 2^nd, 2011 at 7:22pm:

The dr was completely understanding about mot wanting the EEG. Told me the office mgr who scheduled the appt typically states that for all new patients, not realizing I was a former patient. No EEG required.

Dr asked a few ?'s, I asked him a few ?'s, and left with everything I asked for.

Good appt, dr will remain on recommended OUCH list Wink

Great news. Sometimes we get all worked up because of the pain we are in. In this case, you apparently were able to not convey your extreme displeasure, or he was compassionate enough to recognize the pain/panic response. In any case, it worked out well.

Curious. Did you show him the KIP scale? I have to my Boston neuro, and I think it's a great tool for us. Blessings. lance

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LasVegas

CH.com Sponsor

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: EEG ?
Reply #12 - Nov 3^rd, 2011 at 12:35pm

wimsey1 wrote on Nov 3^rd, 2011 at 7:34am:

LasVegas wrote on Nov 2^nd, 2011 at 7:22pm:

The dr was completely understanding about mot wanting the EEG. Told me the office mgr who scheduled the appt typically states that for all new patients, not realizing I was a former patient. No EEG required.

Dr asked a few ?'s, I asked him a few ?'s, and left with everything I asked for.

Good appt, dr will remain on recommended OUCH list Wink

Great news. Sometimes we get all worked up because of the pain we are in. In this case, you apparently were able to not convey your extreme displeasure, or he was compassionate enough to recognize the pain/panic response. In any case, it worked out well.

Curious. Did you show him the KIP scale? I have to my Boston neuro, and I think it's a great tool for us. Blessings. lance

No I did not share the KIP scale, as he didn't ask what the pain level was currently nor during an attack.

I did show him the Imitrex trick and he was impressed.

There were several areas of discussion which I educated my neurologist about CH's, who admitted I know more than he does.

His credential is a Diplomate American Board of Psychiatry and Neurology with EEG, EMG, Evoked Potentials.

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: EEG ?
Reply #13 - Nov 3^rd, 2011 at 7:54pm

Mike NZ wrote on Nov 2^nd, 2011 at 10:54pm:

I've got an EEG tomorrow, although nothing to do with CHs (I'm taking part in a medical research project). But I'll ask the person doing it if they know of any link between CHs and what an EEG can show (I suspect they won't know of one).

I'll follow this post up with the feedback.

I found out that my EEG I had done about 6 weeks ago showed very pronounced activity patterns in the frontal lobe area, which is indicative of headache / pain in that region (I wasn't having a CH at the time, only shadows and a migraine). However the person had no knowledge of it being useful as a diagnostic tool for CH.

Today's was similar, but with a much lower level of pain as I've started to take preventives for migraine in addition to my CH preventive.

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