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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Looking for a new CH doc in Manhattan Feb 16^th, 2016 at 9:42am I haven't had to see my neuro for years, and just found out she left the Headache Institute. Dr. Newman is still there at St. Luke's, but doesn't take insurance anymore! Can anyone recommend a NY/Manhattan CH doc? I seem to recall there was a link on this site to docs/states, but can't find it. Any help is appreciated.
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Potter Ex Member	Re: Looking for a new CH doc in Manhattan Reply #1 - Feb 16^th, 2016 at 10:08am Dr. Brian McGeeney in Boston would be my choice. He's on our side fer sure. Potter
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Potter Ex Member	Re: Looking for a new CH doc in Manhattan Reply #2 - Feb 17^th, 2016 at 9:36pm Mark Green Lawrence Newman Both big names! If willing to come to Long Island, there is Noah Rozen who is amazing too Thanks to Eric Diamond AKA Captain not a very nice person. Potter
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Joshua

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Re: Looking for a new CH doc in Manhattan
Reply #3 - Feb 18^th, 2016 at 7:11am

Thanks much! I miraculously got an appointment with a cluster specialist (Dr. Foo @ NYU) for today at 4pm. I called around for hours yesterday trying to find someone to see me asap.

Dr.Newman was my first choice but he no longer takes insurance (I was willing to pay the $600) -- but no appointments until May!

Wish me luck today. I actually had 1 PF day (24 hours) on this regimen:

40mg pred (tapering off from 80)
480mg Verap
D3 daily regimen (which I started 3 weeks ago)

Maybe it's coming under control. 1 PF day does not a miracle make though.

Am hoping to just check in with this new guy, get some O2 and see if I'm doing the right things.

Thanks again!

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Potter

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Re: Looking for a new CH doc in Manhattan
Reply #4 - Feb 18^th, 2016 at 9:28am

Joshua wrote on Feb 18^th, 2016 at 7:11am:

Thanks much! I miraculously got an appointment with a cluster specialist (Dr. Foo @ NYU) for today at 4pm. I called around for hours yesterday trying to find someone to see me asap.

Dr.Newman was my first choice but he no longer takes insurance (I was willing to pay the $600) -- but no appointments until May!

Wish me luck today. I actually had 1 PF day (24 hours) on this regimen:

40mg pred (tapering off from 80)
480mg Verap
D3 daily regimen (which I started 3 weeks ago)

Maybe it's coming under control. 1 PF day does not a miracle make though.

Am hoping to just check in with this new guy, get some O2 and see if I'm doing the right things.

Thanks again!

Good onya.

Potter

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Looking for a new CH doc in Manhattan Reply #5 - Feb 18^th, 2016 at 1:52pm Here is the link to cluster sufferers recommended doctors. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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LasVegas

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Episodic CH since 11 yrs
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Re: Looking for a new CH doc in Manhattan
Reply #6 - Feb 18^th, 2016 at 4:13pm

^^that entire list is not updated and missing several dozen doctors.

It's been since Sep 2013 when I compiled information from CH sufferers in all 50 states, Canada, and several other countries too. So you may want to call for accuracy. i.e., If doctor is still in practice, accepting new patients, insurance, location, etc.

Seen below are several Manhattan doctors familiar with CH treatment that have been recommended by fellow sufferers who reside in New York, as of 9/2013.

Manhattan-

Dr. Susan Broner
Manhattan Headache Clinic

Dr. Mark Chung
City Care Family Practice

Dr. Mark Green
Mt. Sinai Hospital

Dr. Michael Heublum

Dr. Lynda Krasenbaum
NY Headache Ctr.

Dr. Alexander Mauskop

Dr. Lawrence Newman
Roosevelt Hospital

Dr. Josh Torgovnick

If you need other buroughs, L.I., or other areas of the state, please PM me and I will provide your requested info.

-Gregg in Las Vegas

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

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Joshua

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Re: Looking for a new CH doc in Manhattan
Reply #7 - Feb 19^th, 2016 at 7:05am

Gregg, Thank you!

Update:

Tapered down to 30mg prednisone, holding at 480mg verap. Got a very small HA last night that woke me up, aborted with Zomig (no O2 yet.)

Saw neuro (Dr.Foo at NYU) who wrote me a prescription for O2 and agreed I was on the right introductory regimen and to continue the taper and not increase Verap.

More to come!

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« Last Edit: Feb 19^th, 2016 at 7:15am by Joshua »

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Looking for a new CH doc in Manhattan Reply #8 - Feb 19^th, 2016 at 8:54am Hey Joshua, Great news that you're on the right track. May I suggest that you buy the CH mask here ( see CH.COM Store) on the top left of your screen. It is so much more effective than the standard non-rebreather mask. Keep well, Peter.
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Joshua

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Re: Looking for a new CH doc in Manhattan
Reply #9 - Feb 22^nd, 2016 at 7:05am

Am down to 20mg pred.
480mg verapamil.
D3 regimen

I'm down from multiple hits (4+/day) to 2, which come once as I'm waking and then around dinner time.

Maybe it's time to increase the verapamil again, not sure. Will have to check with the neuro. I've never taken more than 480mg before as usually that holds it.

Thanks to everyone for the support!

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Joshua

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Re: Looking for a new CH doc in Manhattan
Reply #10 - Feb 23^rd, 2016 at 6:59pm

Well, the beast is back full strength Sad

-- so it's back up to 80mg for a longer taper while Verap continues to build up or maybe increase dose.

I've been taking 10-20k IU of D3 per day with Fish Oil as well.

If this taper up and Verap doesn't work I suspect I'll have to try something heavier (anti seizure stuff) -- though haven't had historic luck with them.

Just putting this out there as it's starting to get me down.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Looking for a new CH doc in Manhattan Reply #11 - Feb 23^rd, 2016 at 7:32pm Joshua, I don't know, maybe you tried this in the past??? 50mg Benadryl last thing at night, for 3/4 days. If you have been taking 10/20k iu D3 consistently and suddenly the beast is back, you may have some mild infection. Benadryl makes you drowsey. That's why I say last thing at night. Best, Peter.
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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: Looking for a new CH doc in Manhattan
Reply #12 - Feb 23^rd, 2016 at 7:35pm

Joshua wrote on Feb 23^rd, 2016 at 6:59pm:

Well, the beast is back full strength Sad

-- so it's back up to 80mg for a longer taper while Verap continues to build up or maybe increase dose.

I've been taking 10-20k IU of D3 per day with Fish Oil as well.

If this taper up and Verap doesn't work I suspect I'll have to try something heavier (anti seizure stuff) -- though haven't had historic luck with them.

Just putting this out there as it's starting to get me down.

Hi Joshua,
Sorry to read you are in full scale attack mode. Unfortunately it is quite common when a CH'er begins the Pred taper down that the frequency and intensity of attacks multiply, usually when the Verap has not titrated to therapeutic levels in your bloodstream.

I'm sure others will chime in on their suggestion. My suggestion is to get on the phone right away with your doc and inquire recommendation prior to self medicating.

Do you get the o2 he prescribed, and do you have a NON-rebreather mask to effectively abort attacks?

-Gregg in Las Vegas

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

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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: Looking for a new CH doc in Manhattan Reply #13 - Feb 23^rd, 2016 at 8:43pm Calling the insurance company tomorrow re 02. I think I do have the right mask, will check. I did call neuro and he advised re-up the prednisone, get heart checked (appointment Friday) before upping verap. Thank you for the encouragement, hoping there's some PF nights soon!
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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: Looking for a new CH doc in Manhattan Reply #14 - Feb 23^rd, 2016 at 9:49pm Also, am just very frustrated at myself for having stopped Verap after so long pain free because I thought maybe it was time, and now can't get stable on TWICE the previous dosage. I've been on it for about 3 weeks at the new dose.
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