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.

Dr. Brian McGeeney in Boston would be my choice.  He's on our side fer sure.

         Potter

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

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!

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

Here is the link to cluster sufferers recommended doctors.

    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

^^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

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!

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.

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!

Well, the beast is back full strength :( -- 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.

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.

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

Well, the beast is back full strength :( -- 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

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!

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.