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   Author  Topic: My visit with Dr. Newman - NYC  (Read 360 times)
danm
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My visit with Dr. Newman - NYC
« on: May 9th, 2006, 12:35pm »
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I went to see Dr. Lawrence Newman at The Headache Institute in NYC yesterday.  Although I have been pain-free for about 2 weeks now, I decided to keep my appointment for May 8th.  I’m glad I did.  He is very knowledgeable about cluster headaches.  He was shocked to hear that my last cycle lasted over 4 months.  I told him all the different meds and dosages that I have been on and he told me that the 360 mg. of Verapamil that I was on may not be enough to fight off cluster headaches.  He said the starting dose should be 240 mg. and increased all the way to 1000 mg until the CH is gone.  My previous neuro had me on 180mg. for the longest time before she upped it to 360.  He was also surprised that I have never been prescribed Prednisone as a transitional drug to fight off the headaches until the Verapamil kicks in – usually 7-10 days.  If none of that works, he stated there are dozens of other options.  My old neurologist told me that the last line of defense was lithium.  Dr. Newman said that lithium wouldn’t even work for me unless my headaches were chronic.  Thankfully, mine are only episodic - I feel for all of you chronic sufferers, I don't know how you do it.  Anyway, he said the next time they strike, I shouldn’t be in pain for more than a couple of days.  That may be wishful thinking, but right now I have to hold on to that.
 
He was also very nice and personable.  It took me over 2 months to get an appt. but he told me that if I had mentioned that I was in a cluster cycle when I initially called, that I would have had an appt. within a few days.  He said his doors are always open for cluster sufferers.  He also said that he answers all phone calls personally within a day or so.  We also laid out a plan of attack the next time the CH strikes.  I hope it is a long time from now but I am confident that the next cycle will not be nearly as bad as this one.
 
I would highly recommend Dr. Newman to any cluster sufferer in the NY/NJ/CT metropolitan area.
 
PF wishes to all,
 
Dan
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these things suck!!!!
chewy
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Re: My visit with Dr. Newman - NYC
« Reply #1 on: May 9th, 2006, 2:01pm »
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Good Doc.
 
Whats the plan of attack?
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danm
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Re: My visit with Dr. Newman - NYC
« Reply #2 on: May 9th, 2006, 2:12pm »
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He told me to call him immediately the next time I feel a CH coming on.  We will start up the Verapamil(higher dosage) right away and also Prednisone as a transitional.  Also said we can add neurontin to the mix if the Verapamil alone does not work.  And he will see me within a few days of first attack.  I just feel much more confident that I now have a neuro that understands CH and has plenty of experience treating them.
 
He also gave me some samples of 4mg Imitrex injections.  Nice guy.
« Last Edit: May 9th, 2006, 2:14pm by danm » IP Logged

these things suck!!!!
chewy
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Re: My visit with Dr. Newman - NYC
« Reply #3 on: May 9th, 2006, 3:08pm »
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Thats is also my attack plan minus the neurontin. Works for me almost every time.
 
I throw some melatonin into the mix to.
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sandie99
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Re: My visit with Dr. Newman - NYC
« Reply #4 on: May 10th, 2006, 4:00am »
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Wow, sounds like a great doc to me! Smiley
 
Back in my chronic days, it was verapamil (600mg/day) helped me to reach PF time. I hope that it works for you... Smiley
 
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!

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Re: My visit with Dr. Newman - NYC
« Reply #5 on: May 10th, 2006, 6:48am »
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So good to hear that your Dr has a full understanding of CH. Fortunately, I'm blessed with with a super neurologist as well. I actually have a 'hot-line": he told his secretary to put me through immediately if I call. When I need additional medication he faxes the prescription to the pharmacist so I can get it within an hour. It is sad to read that fellow clusterheads have to go such long and painful ways to get acknowledged.
 
Greetings from a warm and sunny Holland
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You're in for surprise, you're in for a shock. When you least expect me and you turn your back, I'll attack. ( by Judas Priest )
clusterdeb
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Re: My visit with Dr. Newman - NYC
« Reply #6 on: May 14th, 2006, 10:44pm »
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I too have an understanding doctor, I can email him any time and he actually responds. If I get to sounding real desparate he calls, personally.  Sad but Im about at the end of the preventatives. Tried about everything, trying Lyrica now, we will see, Im going to the health food store tommorrow I want to try kudzu, anyone tried it? Huh
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ddj
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Re: My visit with Dr. Newman - NYC
« Reply #7 on: May 23rd, 2006, 10:03pm »
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Good to hear that your visit went well.  I am also in the NY metropolitan area, and currently seeing another neurologist, Dr. Randall.  I heard that Dr. Newman is a cluster headache sufferer himself.  It is always a plus that if a doctor fully understands cluster headache.  
 
I have tried neurontin before, it works well in the first 2 weeks but then I found that it actually triggered my headache, maybe its just me.  So far, topamax works for me in this cycle.
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