I now realize a neurologist is not a headache specialist.  What a difference!!!!  Went to the Jefferson Headache clinic yesterday.  New doc knows his shit.   I am pain free now so this is just to get my foot in the door.  On my first appt I was offered treatments that I had begged my previous neuro about for years, like DHE and nerve blocks.  He could not believe I was never offered a nerve block  before.   I had to give myself a practice needle of the DHE.  Not sure if I should fill that script now cause I am hoping to go into a long remission again.  

Had to sit with a psychologist who made the determination that I still have childhood issues with my mother and my brother.  Hmmm....OK

Best part was when it was all over I was asked to particpate in a study for CH right then and there.  SHe was a young woman from Thailand who tickled my forehead with a gauze pad.  All I had to do was say if it hurt or not.  I sure hope tickling my forehead will help find a cure for CH.  

THought I would share and good time for me to throw out that if you are not happy with your current doc, ditch em

Good for you. :)

Sanna

Hi Kevmd,  Glad you found a Doc that is working with you. :)

Tickeling of foreheads with gauze for a ch study???? ROFL!!  

Beth

Quote:

I sure hope tickling my forehead will help find a cure for CH.

LMOL ;D ;D
Yes, but is she good looking and single?
all the best
thebb

Thanks for sharing the good news Kev.  It really helps to be dealing with properly educated Drs.

-Dennis-

Kev,

Might want to hold off on the script for the DHE until you need it. My neuro said he thinks they may be out with a nasal spray in it sometime this year that will be about 25% more effective than the shots (if you've not had them - they feel like battery acid going in).

Hugs BD

Thebbz....she was good enough and I couldn't understand a word she said though.  But I'm married anyway.  The study itself and I quote, " We will examine you for something called cutaneous allodynia"  That is why they were tickling me.

Kevmd,

     I'm glad you posted this, I'm also from the philly area and looking for a new doc.  First impressions did not go well with the one I saw last week.  I started looking around and came across Jefferson.  Did you see them in the city or do they have offices in the burbs?  (A lot of the Jefferson departments have offices out in Bryn Mawr and/or Paoli.)

Mike

Mike
To my knowledge they are only in the city.  Get working on it quick.  While I was there I heard them giving appointments in October.  I waited 5 months but it was worth it so far.  I know driving downtown sucks but it wasn't that bad.  Just a few minutes from 95.  Let me know if you have any questions

Kev,

Glad the appt went well!!  Who are you seeing, if I might ask?  I actually was just there on Wednesday - so the day after you!  I remember you said you were waiting for a long time.  Back when I first started going there, I had to wait a few months, but I was away at school, so didn't mind the wait.  Thank GOD for that place, though - they've really helped me survive the past few years!  It hasn't always been great, but it has helped immensely!  I even worked at the center for a summer in research, which was very fun and interesting.  Too bad I didn't know you were going to be at the Center on Tuesday - I actually work right around the corner from the Center in the Intensive Care Nursery!  I think Jefferson is a great place, personally! :)

Mike,

Definitely get on making an appointment at the center, as Kev is right and it can take some time to get in!  It is worth it, though!!  They are one of the best centers in the world for this stuff.  They only have one office - 8th Floor Gibbon Building at Thomas Jefferson University Hospital on 11th and Chestnut Streets.  There are some other headache specialists in the area, but I truly think that Jefferson is the best place to go for it.  There was talk that they were moving the center to Methodist Hospital, but I haven't heard any more about that yet.

Kev - Glad you participated in the allodynia study.  My neuro is really interested in studying allodynia.  I remember when I first heard of it, I was like, "What?  A gauze pad actually causing pain?"  hehe  However, I think even that bruised feeling that many of us have over our afflicted eye is a form of allodynia.  At any rate, it's good that a place is researching SOMEthing connected to CH!

Hugz,
Carrie :)

I am so happy for you to have a Dr that knows what they are doing, I have a well intentioned one but lets face it I am pretty much teaching him what I am learning from here. I won't even tackle dhe and nerve block subjects. anyway i hope many pain free days are in your future.
I live in the northwest and not many docs around here I have heard of one in missoula montana and hope to find him soon.

kevmd wrote on Jul 23^rd, 2008 at 3:43pm:

The study itself and I quote, " We will examine you for something called cutaneous allodynia"  That is why they were tickling me.

Well, I'd never heard of it.

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Best,

George

It's a bit old now, but an article out of Jefferson from 2004 on brush allodynia and Cluster Headache:

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