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Does anyone have a document that I can show to my dentist regarding this stuff and CH? He thinks that I am nuts! He slipped some in last visit and started a viscous cycle! I still have to return for the crown and want a paper to hand him.

Of course, he has no idea what Ch is, so I need a short form of that description too.

thanks!

spiny

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spiny,

All I could find was what Bob Wold wrote me after I had a cluster attack at the dentist's office:

[highlight]If you have CH and have to go in for dental work, do not let them deaden you with Xylocaine with EPI (epinepherine).  It is a major trigger for headache, and a dentist worth his or her salt will know that.  Instead request prilocaine or anything without EPI.[/highlight]

And then there's this from someone (can't remember who) that posted on the CB board way back:

[highlight]And one more thing, while dosing w/psilocybin I did have to use

Imitrex shots only twice. This was due to administration of Xylocaine

w/EPI in the dentist's office. This stuff triggered me hard. In

dentist visits thereafter, I was given Citanest (Prilocaine) without

EPI and did not get triggered with this. If anybody has problems with

attacks while at the dentist, it may be worthwhile to inquire about

what they're using on you.

[/highlight]

As far as a brief explanation of CH, I dug this up:

[highlight]FOREWORD

by Seymour Diamond, M.D.,

Director, Diamond Headache Clinic

As a headache clinician, the opportunity to review commentary provided by headache sufferers about their pain experiences and the various

treatments offered has always been rewarding and insightful. The renditions provided in this text, by the cluster headache victims, are

especially enlightening.

Cluster headache is not a common headache disorder, and like most pain problems it is difficult to objectively measure the degree of suffering.

Only the cluster victim can understand the excruciating pain and discomfort that characterize this disorder. Fortunately, only a small percentage

of cluster headache cases complain of the chronic form. Chronic cluster headache is distinguished by its lack of a remission period lasting more

than 14 days, or the absence of a remission period for more than one year.

One of the earliest descriptions of the different forms of cluster headaches (episodic vs. chronic) was given by Bayard T. Horton, M.D. (18951980),

of Mayo Clinic. Doctor Horton treated many of his chronic cluster headache patients with intravenous histamine desensitization. His work

with

this form of therapy was more or less abandoned during the last three decades. However, for those chronic cluster headaches patients

unresponsive

to standard forms of therapy, the use of intravenous histamine desensitization may offer a viable alternative. At the Diamond

Headache

Clinic, this therapeutic modality is reserved for those chronic cluster headache patients refractory to all previous treatment options. It

is

my hope that by citing Doctor Horton's monumental work and his discernment about this debilitating condition, victims of chronic cluster

headache

will realize that other options are available to find relief.

The presentation of this book will also offer those with cluster headaches an insight into their condition, and a recognition that they are not alone

in their suffering. The observations presented here will also be instructive for physicians managing similar cases.

Seymour Diamond, M.D.

Director, Diamond Headache Clinic

Director, Inpatient Headache Unit, Columbus Hospital

Chicago, Illinois

PAIN

Cluster victims are compelled to experience a considerable degree of suffering. Many gain a small measure of comfort in knowing that other

people realize the true extent of their agonizing affliction. Here is a list of expressions frequently used by cluster sufferers to describe their pain:

hard to comprehend; impossible to describe; like an ice pick stuck in my eye; like a knife plunged through my temple; excruciating; unbearable;

suicidal; devastating; severe; intense; fierce; brutal; torturous; debilitating; horrible.

(Complete information regarding "Pain" is included in the book.)

EFFECT on LIFE

A cluster headache is a disabling affiction that detrimentally affects many aspects of the victim's life. Unlike other headaches, one cannot simply

"take a couple of aspirin" and continue with everyday events. In addition to the physical pain, this ailment impacts on emotions, marriage,

finances, and worldly obligations. It clearly diminishes the quality of one's life.

Here is a list of typical comments made by exasperated cluster sufferers: I regularly miss work and other responsibilities; they're difficult on my

spouse; I'm afraid to leave the house; I can't travel or go far from home; I live in constant fear of the next attack; It's embarrassing to have an

attack in public; I'm afraid to go to sleep; I function for days on end with little or no rest; they're emotionally and financially draining; I am always

depressed, anxious, and testy; I'm tired of fooling around with them; they're robbing my life.[/highlight]

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I would get tough on him.  Tell him that you don't need any damn paperwork or studies to prove anything.  You don't want epinephrine, you pay his bills, and therefore he will no longer give you epinephrine or you will find another dentist.

Suck it up dentist boy! :)

-Ricardo

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If I never have to see a Dr. or dentist again I will be happy.

Yes Spiny, these folks often contribute to our nightmares.

I have not had attacks triggered by getting EPI-laced anesthetic from the dentist.

My last crown (about a month ago), wasn't associated with CH in any way.

So ...... In wanting to try everything, I copied the above highlighted information, printed it out, then took it with me for my second crown I was getting last week.

She said, "Sure, no prob, I can give you anything you want ..... but the epinepherine-free stuff wears off faster and doesn't work on blocking the pain as well".

I said, "Go for it, I am doing research".   

Well, even the double-doses of non-EPI anesthetic did not work.  It was like water.  I asked for the EPI-laced stuff anyway, hoping for the ability to endure the pain.  It didn't work either .... what the heck is going on?!  The lead dentist (this guy is amazing) gave me Stabi-dent .... and I'm not making that up.  IT WORKED, and then the procedure could be finished.

Thank God the EPI loaded anesthetic does not trigger CH for me.  I'd have to be unconscious for any future work.  Actually, that doesn't sound to bad.

Moral ...... continue to try everything, then give your dentist hell for adding pain to someone who "definitely DOES NOT need the experience". 

weatherman

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For me, dental work seems to give me much more pain than most patients, and almost always gives me a cluster.  Now I won't have anything done at all unless I'm on nitrous oxide.  No more mouth pain and it completely dissolves a cluster.  If I can ever find a way to get a big ass nitrous tank I'm going to.  I've looked, but not hard.

-Ricardo

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I took two double shot Starbucks and my O2 with me. He doesn't use nitrous or have O2. I sucked down the coffee when he went into the next room.

I will definitely not have any dental work done from Aug till April from now on.  >:( It has been a slice of hell since he did the work.

Dentists should all have O2 for an allergic reaction!!!!!

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Last week I had two crowns put in.  I talked to the dentist before we started about the epinephrine.  She of course had no idea what a cluster headache was, so I told her that I got a lot of really bad migraines.  She sort of sympathized with that.  Then she asked if I had high blood pressure.  When I said I did (which I do) that’s when she agreed to skip the epinephrine.

I don’t think trying to explain how this will affect you (the patient) will be very affective.  Instead try to explain how this will impact the dentist.  My suggestions:

The crowns went in just fine.  The anesthetic did start to wear off towards the end, so she had to give me some more.  If she had only been working on one tooth I don’t think I would have needed the second dose.

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When I said I did (which I do) thatÂ’s when she agreed to skip the epinephrine.

I still stick to my original argument-

I would get tough on him.  Tell him that you don't need any damn paperwork or studies to prove anything.  You don't want epinephrine, you pay his bills, and therefore he will no longer give you epinephrine or you will find another dentist

If you are having a dentist that is reluctant to do what you want and need the idea needs to be reinforced that they are performing a service for you.  A service you pay for.  Numerous numerous people with the affliction that this doctor has never even heard of get hit HARD with one of the most painful condition known to man because of this drug.  If you have a dentist that is still arguing with you after you tell them this, in my opinion you have a half rate dentist that is looking to make their job easier at the expense of your health.  NOT OK. 

I have had my dentist skip the ephedrine version for over a year now and had a number of instances where I was in the chair for more than 2 hours.  It obviously was harder for my dentist, but not THAT much.  It required her to redose me with novicaine a couple times instead of just the once in the beginning.  I have had root canals, crowns implanted, chipped teeth and cavities filled all with the non-ephedrine version and it went fine.  If your dentist is saying they can't do it or that it's going to be a hassle, ask them (and yourselves) why other dentists can do it but this one can't.

-Ricardo

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my daughter says it's synthetic adrenaline, used anytime you get anesthesia. it's used to give more profound anesthesia and to control bleeding and increase duration of anesthesia. she will watch for us ch'ers when we come to her office.

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