...and I'm actually feeling the beginnings of hopefullness :)

He is truly, a smart, compassionate, understanding man.

All of the medical issues he wanted sorted out by the other specialists at UCSF came back ok, so we move onward...(if you remember, he had worries about my pituitary/vision)...at any rate, my pituitary is enlarged but that specialist just wants me back in a year for another MRI, there was no sign of a tumor so we are just going to keep an eye on it.  Dr. Goadsby says we need to rule out paromxysal (sp?) hemicrania so I am to take indomethacin 3x per day for 2 weeks.  In the meantime, he also said, absolutely no alchohol and no hallucinigenic drugs (he went on to further detail, no cannibis, ecstacy, LSD, mushrooms).  If the indo doesn't help we will start treating for cluster.

He is amazing, I sat there in his office and I just was crying my eyes out because I want all off this over with...he listened and then so compassionatly told me that I *am going to be well again*, he said that some people go years and years without the proper diagnosis and suffer needlessly, he understood that the past several months have been difficult and disabling but there is hope, I WILL be able to do all the things I was doing * I will have my life back *.  We WILL get to that point.

He said that when I am feeling better, I should come back down and we can have a chat about why this happens.

I called my partner, Ron, after the appointment (I went down with my "mom & dad") and I was going on and on about Dr. Goadsby, he said, my goodness, it sounds like you are in love :lol...I might be :)

I am SOOOOO glad you COULD go and DID go!!!!!!!!!!!!

We're out in NJ and out of TOTAL desperation in August we e-mailed him.  He could not have been more compassionate in his reply.  We're in love too (I'm the supporter, Gary's got the clusters).  I WISH we could get out there!  If there's been no progress, maybe in the spring.

In the meantime, while he won't provide specific consult for someone he's never seen, he's being SO helpful to our point-man Doc in general questions, avenues of treatment, etc.  

You are in great hands now!!!!!!!!!!!!!!!!!!!!!!

Laurie  :)

How good is that.   :)  Dr. Goadsby is the best.  A lot of us had the pleasure of meeting him at the OUCH convention last July.  
A truely compassionate and dedicated doctor.....very impressive!   And yes,  a love too. :)

Jackie

What kills me is the START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - Indomethacin/ Tegetol (Trigeminal neuralgia ) are used to rule out other conditions. They are not good treatments for CH…

Why in the world, what reason can there be for no O2 order… It doesn’t interfere with the drugs and if the drugs work than you’ll know. I am not seeing a quick road to pain relief here, It is almost standard affair to do a prednisone taper with verap… Thinking out loud again I am… Roland. :-/

Roland :)  I asked Dr. Goadsby about o2, and he added that to his recommendation that he sent to my local neuro.  He said that absolutely I could try it...then on the way to the car I thought, hmmm, so if indo helps with the hemicrania and 02 helps with the cluster wouldn't I just cancel each other out if I did both?  Anyhow, I am just about to email him with that question, but have no fear, he was completely on board with the 02 :)

katjac wrote on Dec 6^th, 2008 at 9:56pm:

so if indo helps with the hemicrania and 02 helps with the cluster wouldn't I just cancel each other out

No, if the meds work than you won’t be using the O2 because it’s for aborting. No HA, no O2 use…

Roland. :)

Ah, ha! You're so smart! :)  I get it!

I am so happy for you.  You are on the right tract with him for sure.

 I also was priviledged to meet him in Dallas.   He even kissed me good-bye.   :)

My wish for everyone with a bad Dr....  A Dr. who won't listen...or  no Dr. at all....would be for them to see Peter Goadsby.

That is my Christmas wish for everyone out there struggling.

wrote on Dec 6^th, 2008 at 9:47pm:

What kills me is the START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - Indomethacin/ Tegetol (Trigeminal neuralgia ) are used to rule out other conditions. They are not good treatments for CH… Why in the world, what reason can there be for no O2 order… It doesn’t interfere with the drugs and if the drugs work than you’ll know. I am not seeing a quick road to pain relief here, It is almost standard affair to do a prednisone taper with verap… Thinking out loud again I am… Roland. :-/

Indomethacin?
Because Goadsby knows what he is doing and  EVERY decent neuro should do it if it hasn't been done.

I would LOVE to have a locked post on here about it so every possible CH sufferer just does the indotest for the few days it takes.

Why?
Because there are several unilateral headache types which indomethacin STOPS COMPLETELY, yes, stops them in their tracks in days, leaving the person completely pain free. Several of these headache conditions mimic CH in some symptoms.

Frankly it is insane not to try and cheap and simple drug which could be your "silver bullet".
If it doesn't work, nothing lost whatsoever and the diagnosis becomes clearer.

katjac

Great to hear you now have a feeling someone understands and can really help. The reason we have been raving about Goadsby for years here and got shouted at for it sometimes and told to shut up on here is what you are finding- he knows more than almost anyone in the world about CH and TRULY cares about us on a personal level. he has made us his life's work and is tireless in the time he gives. Many have just gone down the research route but he does both, researches to push the boundaries, but still treats individuals and talks and lectures and meets people and publicises and campaigns for us too.

Prof Goadsby fan club here too!

Wendy

Right on Wendy.  New clusterheads, especially female, should try indo first!

WDGCH ;)

WDGCH can be read two ways Bob   ::) :D ;)

pubgirl wrote on Dec 7^th, 2008 at 2:21am:

Indomethacin? Because Goadsby knows what he is doing and  EVERY decent neuro should do it if it hasn't been done. Why? Because there are several unilateral headache types which indomethacin STOPS COMPLETELY, yes, stops them in their tracks in days, leaving the person completely pain free. Several of these headache conditions mimic CH in some symptoms.

I totally agree Wendy and did the tests myself. I just hate to see untreated pain and what I said was more a blanket statement in general. I firmly believe that O2 should be used in the same manor for the interdiction of CH. The docs should just give you the O2 and instruct on how to use it. I just don’t see the need to go through the rampart of drugs first before writing a simple O2 order.

I believe it is the “there must be a drug" mentality of physicians and I prescribe to the “keep it simple stupid” methodology.

Best to ya dear.

Roland. :)

BTW, I just kind of assumed his referring neuro would have done these tests before going to the point of referring to HA Guru Goadsby.

Goadsby rocks.

Quote:

WDGCH

Bob is a brave man. Stickin out your neck with all those knifes around. ;D ;D ;D ;D
Interesting to note, no hallucinogens. They interfere with traditional drug therapy. One or the other, not both.
the bb

Roland,

My local neuro did have me on indo but it was 24 hr release, which did nothing for me.  Dr. Goadsby said of course that dosage would not work, so in essence, right drug - wrong dose.  All I know is that it tears my stomach up, so I have to take a med for that along with this new dosage.

katjac wrote on Dec 8^th, 2008 at 2:09pm:

All I know is that it tears my stomach up

Like gun powder in a rottweiler … Worst drug I ever took as far as the tummy!  ;)

how can i email DR Goadsby  and where is located ?

my neuro now is real good but i travel so far to see him. (worth it in the long run) 8-)

Andy and i have also been privelaged to have met Prof Goadsby and for the record Andy also had the indo test!!!

He is a great man and an absolute expert on all TAC's!!!

Hope he helps a whole heap of you guys!!!!

Sandra xx

wrote on Dec 8^th, 2008 at 4:51pm:

how can i email DR Goadsby  and where is located ? my neuro now is real good but i travel so far to see him. (worth it in the long run) 8-)

I have heard so much wonderful stuff about this doc but I feel like he is like finding the Wizard of Oz. I have been trying to get an email address over a year. There were rumors last summer he was at Jefferson for a bit but that didn't work out.

Charlotte