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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >>  The New York Headache Center(Follow Up!!)
        
(Message started by: E-Double on Jun 28th, 2004, 3:48pm)
Title: The New York Headache Center(Follow Up!!)
Post by E-Double on Jun 28th, 2004, 3:48pm
Anyone have any experience with this place or dealt with Dr. Mauskop?

Always appreciated!!!

E
Title: Re:  The New York Headache Center
Post by don on Jun 28th, 2004, 4:04pm
Heres just one article on him.

http://www.relieve-migraine-headache.com/mauskop.html

Personally I wouldn't even consider him in the running as my neurologist.
Title: Re:  The New York Headache Center
Post by E-Double on Jun 28th, 2004, 7:24pm

Quote:
Heres just one article on him.

http://www.relieve-migraine-headache.com/mauskop.html


It's actually a good review if you read past the 1st sentence.
The only thing that I can see being put by is the fact that he also does alternative meds (read your reply about Accupuncture = QUACK)



Quote:
Personally I wouldn't even consider him in the running as my neurologist.


May i ask Why??
It's so damn hard to find a damn Dr. in NY period nonetheless a reputable one!!!

Good luck to you,
E
Title: Re:  The New York Headache Center
Post by Superpain on Jun 28th, 2004, 9:08pm
How far is Syracuse?

I'd consider this guy...
http://www.upstate.edu/neurology/haas/
Title: Re:  The New York Headache Center
Post by don on Jun 28th, 2004, 9:13pm

Quote:
May i ask Why??  


Sure. This just me.

I wouldn't consider a neuro who is seeking to use alternative treatments AS an alternative to treatments that are already proven effective.

When I seek a Doc I want treatment with the most effectve medically proven results. My guinee pig days of Docs experimenting with my pain are over.
Title: Re:  The New York Headache Center
Post by E-Double on Jun 28th, 2004, 9:13pm
about 9 hr drive.
Would be fun!!
Maybe we could take it together and we're lucky get a kip10 during the drive. lol

Thanks man!!
Title: Re:  The New York Headache Center
Post by Peppermint on Jun 28th, 2004, 10:01pm
Hey E-double, check your email.  
Title: Re:  The New York Headache Center
Post by UN_SOLVED on Jun 28th, 2004, 11:43pm

on 06/28/04 at 19:24:10, E-Double wrote:
The only thing that I can see being put by is the fact that he also does alternative meds (read your reply about Accupuncture = QUACK)

MHNI offers this too. They offer every type of therapy that you can imagine. From accupuncture to neurostimulators. I don't think they're "quack"s.

I'd really like to know what they are talking about HERE (http://www.relieve-migraine-headache.com/cluster-headache-treatments.html):

Quote:
If medical treatment is ineffective, there is also surgical treatment. This area of research is very promising. For example, there is surgery available which will get rid of the nerve itself that is sending the pain signals. As you may guess, such treatment has its risks, but the pain of cluster may make it worth investigating surgical cluster headache treatments!


Unsolved
PS... BTW ... Accupuncture did NOTHING for my clusters (or for anything else ! )
Title: Re:  The New York Headache Center
Post by D on Jun 29th, 2004, 2:37am
Apparently some of you have not run into enough charlatans in the medical profession? My vote is with ‘don’ on this one.

Peace and Positive Energy

D
Title: Re:  The New York Headache Center
Post by Superpain on Jun 29th, 2004, 3:45am
Screw this.
Docs and meds are too expensive.
Eat some shrooms.
Title: Re:  The New York Headache Center
Post by E-Double on Jun 29th, 2004, 5:43am
Hey all!!

How about judgement be put off until someone says they actually went there and that he is or is not effective!!!

I really asked for personal experience with this specific doctor and not a witch hunt!

I'm sure it's meant to save me time, money and hope but at the same time nothing was done yet.
and this Professional is still a "name" out there who happens offer alternative treatments for non CH'ers while providing everything we talk about on this list  for the "heads"

Appreciated but wow!

I'm just trying to get some help in an area that is near impossible!! Freakin' NY!!! All I know is I'm reaching my point   [smiley=gocrazy.gif]

E-Double the frustrated then before
Title: Re:  The New York Headache Center
Post by don on Jun 29th, 2004, 6:05am
It's not a witchunt it is a comprehensive (as best as a message board can do that) look at a Doc you are considering to treat you for the most painful condition known to man.

It is the comprehensive research that you do that will save you the frustration.
Title: Re:  The New York Headache Center
Post by E-Double on Jun 29th, 2004, 6:32am
Gotchya & i understand that....

What I'm saying is that YES I want empirically validated procedures and treatments.

and that if this fella is a Neuro that  provides this to CH'ers (the meds, etc..)

then great!! Simple!
I would not go see a "quack" for anything. I know and have researched enough to know that MEDS (including O2)are going to be the way.

all I was asking or saying was: does anyone have experience with this dude?
and... just because he may also use alternatives for other types of headaches NOT like ours.... does this turn you away?

Thanks again!!

trying to keep that Positive Mental Attitude!
E
Title: Re:  The New York Headache Center
Post by don on Jun 29th, 2004, 6:46am

Quote:
just because he may also use alternatives for other types of headaches NOT like ours.... does this turn you away?


No but I would want to know exactly how he does treat our condition before wasting time going to see him.


Quote:
trying to keep that Positive Mental Attitude


Gotta say that under the conditions your doing a good job of it. Just trying to steer you clear of all the wasted time and frustrations myself and others have gone through seeking appropriate treatment.

Keep asking questions and asking for help. Have you checked the preferred Doctors listing on the OUCH site?
Title: Re:  The New York Headache Center
Post by E-Double on Jun 29th, 2004, 7:00am

Quote:
Have you checked the preferred Doctors listing on the OUCH site?
don


That's where I got his name!! :)

and I appreciate the "good Job" comment!! It's damn hard!
This is really fucking up my whole existence. HAHA.
Seriously, Late for a client been pacing on and off since 5 which is a damn good night! Actually got ome zzz's but feel one coming on and afraid to hit the road.

Already had when driving which seems to be just wrong!!

Best to you and will keep with the P.M.A.
Feel good,
Eric
Title: Re:  The New York Headache Center
Post by Superpain on Jun 29th, 2004, 3:14pm
He's gotta be pretty good to be holding his position, I'd hope...

And if he's not... Well, it's just one more doc you don't go back to. There's plenty in NYC... Gotta be.
Title: Re:  The New York Headache Center
Post by UN_SOLVED on Jun 29th, 2004, 5:44pm

on 06/29/04 at 05:43:15, E-Double wrote:
I really asked for personal experience with this specific doctor and not a witch hunt!


I did do acupuncture. Sorry it wasn't with "this specific doctor"

Just trying to help

Unsolved
Title: Re:  The New York Headache Center
Post by E-Double on Jun 29th, 2004, 6:15pm
honestly all,

I'm not concerned with the "alternatives" if this guy is going to find the right cocktail for me of prevents and aborts then the fact that he is also does the other shit is meaningless.

As far as the alternatives, accupuncture, biofeedback, Cognitive behavior therapy....

these are (atleast CBT and Biofeedback) are empirically based methods that could possibly used for the "anxiety" associated with our CH.
Not as the treatment!!!

Maybe I'll do my PhD dissertation on it.  ;)
Title: Re:  The New York Headache Center
Post by D on Jun 29th, 2004, 7:19pm
At some point ' xannax ' looks awfully good to some us.

Peace and Positive Energy

D
Title: Re:  The New York Headache Center
Post by E-Double on Jun 29th, 2004, 7:35pm

on 06/29/04 at 19:19:29, D wrote:
At some point ' xannax ' looks awfully good to some us.

Peace and Positive Energy

D


Yuppers!!!!!! I love it. calms my ass down quickly!
For me that becomes half the battle. Well atleast 1/16 or 1/5

I'd love some CBT as well though!!
I have to get over feeling guilty for seeing my loved ones in pain over me!! and the factthat this has completely fucked up (in my mind) my rep. with my clientele. I know it hasn't but since I had a coouple of attacks in front.... WOW

Point is love Xanax as well.
Hee Hee, gotta go pace,
Later and be well,
Eric
Title: Re:  The New York Headache Center
Post by kissmyglass on Jun 29th, 2004, 11:41pm
Looks like you are about an hour away from the New England Center for Headaches (in Stamford CT).,,,I'd be all over that if I were you...

Good Luck!


Kev
Title: Re:  The New York Headache Center
Post by Superpain on Jun 30th, 2004, 2:49am
Never met anyone that didn't like xanax... Unless they're some sort of "anxiety free freak"...
Plenty of anxiety witht his crew. ;)
Title: Re:  The New York Headache Center
Post by don on Jun 30th, 2004, 12:34pm

Quote:
He's gotta be pretty good to be holding his position


Dr. Kervorkian holds prestigious positions but I aint going to him either.
Title: Re:  The New York Headache Center
Post by E-Double on Jun 30th, 2004, 5:43pm

Quote:
Dr. Kervorkian holds prestigious positions but I aint going to him either.
don

So I'm still going to go to NYC and check it out. It can't hurt anymore than these deamons!!!  And Here's Why!!  ::)

in the meantime....

This morning I went to my original neuro and met with her associate. (Keep in mind the original was and or is sick thus having not been able to see me.....)

He goes over the previous plan and is looking over things. I brought in charts and graphs that I developed based on my Aches and all the variables including that could possibly be accounted for!

Asked the questions regarding tapering up and down and why this and why that?

He seemed to agree that a "mistake" occurred. I was freaking right  and ofcourse you guys appear to be more so than the docs...

from another post:
Quote:

on 06/26/04 at 16:05:54, don wrote:
The preventatives should be started a week or two before the prednisone taper if possible. Then the dosage level maintained or increased.


[quote]Why Depakote and not verapamil?


to answer and maybe it will be asked on another thread: I have awesome blood pressure so why be put on a med that any effect it negatively. no need to risk deceasing it...
Anyway:

I was pushed back up to 1500mg Depakote. My choice (He offered different meds)
because I honestly don't want to change so many damn variables at once. How the hell will i ever know what is going to be effective and he gave me imitrex stat dose.   How is 2 shots going to make a difference if I am getting 4? and why not the syringe where we could try a lesser amount first then increase if I need it and

The kicker... NO Oxygen!!!!!!! go to hospital or will discuss in 2 weeks @ next visit.

THAT is Why I'm going to Manhattan to give this guy a shot!

Later!!
Eric
Title: Re:  The New York Headache Center
Post by D on Jun 30th, 2004, 9:09pm
Eric,
It can hurt more!!!

The most casual observer can see by your thread here that you are an intelligent fellow, intelligence is a plus, but with cluster headaches it is not enough. Do you have a supporter, wife, girlfriend, best friend, anyone? If not, maybe you should consider finding someone on this board that is not in cycle and has the time to help you make ‘better choices’.

If you are going to rely on a physician or specific clinic…get the best one you can find…even if it is in the rain forest of South America…going because anything is better than nothing is simply another ‘better bad choice’…in my opinion.

Peace and Positive Energy

D
Title: Re:  The New York Headache Center
Post by miapet on Jun 30th, 2004, 10:21pm

on 06/30/04 at 17:43:38, E-Double wrote:
I was pushed back up to 1500mg Depakote. My choice (He offered different meds)
because I honestly don't want to change so many damn variables at once. How the hell will i ever know what is going to be effective and he gave me imitrex stat dose.   How is 2 shots going to make a difference if I am getting 4? and why not the syringe where we could try a lesser amount first then increase if I need it and

The kicker... NO Oxygen!!!!!!! go to hospital or will discuss in 2 weeks @ next visit.


That's a lot of Depakote . . if I remember right, don't you work with special ed type kids . . autism or something? . . .I'm surprised you wanted to stay with the Depakote, and that you had it upped to 1500mg . . .Depakote works on the frontal lobe, when it's given to a seizure patient, if the seizure activity isn't in the frontal lobe, they continue having seizures . . and my understanding of CH says that it's related to/due to a malfunctioning hypothalmus, which isn't in the frontal lobe.
AND no o2???  
I don't know if I would want to continue with anything that group is saying (your neuro or her stand in) . . .
just my opinion . . .

Good luck finding someone that is familiar with CH
*positive light and energy*
miapet
Title: Re:  The New York Headache Center
Post by E-Double on Jul 1st, 2004, 1:41pm
I'm trying !!!!

As far as Depakote (Spdium Valporate) ... is considered the Second line of meds according to the research that I've been doing. Prior to the even more serious shit we/some may eventually take or do.
Meds work in specific areas depending on what used for. If no seiaure activity is occuring the effects may not be working on the frontal lobe. But it is proven empirically to work for clusters.
Anyway chose to stick with it because it was done improperly with the first doc and since I already had it in my system wanted to see if it would help by upping.

As far as O2 I couldn't agree more!!!!!!!

In fact I had a massive attack this morning. I was going hard for over an hour and I finally had to call 911. I wanted to get that O2.

Sucked down and withing 10 minutes I swear to god It was gone. Got a shadow but who cares!!!

Called my doc office and I demanded a script or something!!! II don't get it!!! It helped and why should I have to go to the hospital or call 911 every time I need this and the fact that I could use this(O2) even if I am at my medicinal limit says it all!!!

You guys are right!!

I have 1 more week to go til I see the manhattan guy and then I'll see.
He's on the OUCH recommended and the ACHE site so hope to have some answers & if not then we switch it all I say Fuck it and and take a searing spike to his eye to show him how it feels!!
Best wishes
E
Title: Re:  The New York Headache Center
Post by miapet on Jul 1st, 2004, 3:10pm
I'm only going to say . .good luck . . .
miapet
Title: Re:  The New York Headache Center: Follow up!
Post by E-Double on Jul 9th, 2004, 5:47pm
I told ya all that I would keep ya updated .
I went today and my experience was pretty decent:

The Dr. questioned a lot of what what had been prescribed for me mainly the Depakote over a month period with no change and why Verapamil was not tried.
He prescibed this (Verap@250 to start)which definitely made me feel a bit better.
Another question though: Was I supposed to go back on an agent(steroid) again? This was not perscribed.
Haven't gotten script yet just got back and I'm actually not home until the evening.
I justcouldn't stay away from you guys ;)
He also made a suggestion to try the Zomig spray. Said that it shiouldn't give me that "fuzzy"feeling that I had with the pills.
Not sure what to do though.
Do I stick with the Imitrex and just change to verapamil or do I do the both. kinda just sick of changing from this to that. Sure ya know what i mean.
He asked if I had tried O2 and if not htat I should...
Everything appeared to be inline with what you all have experienced with "knowledgeable" doctors.
Big relief.
The only thing was that his "bedside" manner kinda sucked. Very abrubt, yet he did have all my info ahead of time and I guess there was no need to bullshit around.I can deal with that as long as he provides the right course of action.  Taht makes me feel more positve! :)
He did say to give him a call in a week to let him know how I am doing.
What do ya guys think? There is a bit more but I'll get into that another time.

Thanks again!!!!!!

Eric
Title: Re:  The New York Headache Center(Follow Up!!
Post by Superpain on Jul 9th, 2004, 5:56pm
I think you are confusing your self... As well as me...

Take the steroid...
Take the verapamil...
You got the O2, right?
Use the imitrex as an abortive when away from the O2, or when O2 may not work.... Or use the zomig...

But don't use both (trex & zomig) within 24 hrs of each other.
Title: Re:  The New York Headache Center(Follow Up!!
Post by Kris_in_SJ on Jul 9th, 2004, 8:04pm
Like Chris, I'm a little confused.  Did he give you another script for Prednisone?  

Get the Verapamil filled and start it right away.  DO NOT use Imitrex and Zomig within the same 24 hours.  If one if working for you, stick with it and supplement with O2 (you do have it, right?)

If he did give you a script for Prednisone, get it filled and start the taper.  2 tapers within one cycle won't hurt you (though it might make you gain 30 lbs. or so).  By the time the taper is finished, you'll probably know whether or not the Verap is going to work.

If he didn't give you a script for Prednisone, call him in a week as agreed and let him know how you feel.  For me, Verapamil takes a couple weeks to work and I usuallly have to ramp up the dose to 480mg before the cycle is reduced to shadows only.

Good luck - keep us informed.  I'm sending you many hugs, and fervent wishes for the Verap to be the perfect prevent for your cycles!

Kris
Title: Re:  The New York Headache Center(Follow Up!!
Post by UN_SOLVED on Jul 9th, 2004, 9:34pm

on 07/09/04 at 20:04:22, Kris_in_SJ wrote:
If he did give you a script for Prednisone, get it filled and start the taper.  2 tapers within one cycle won't hurt you

LMAO .... wanna know how many times I've done steriods this cycle ??  :-X
Unsolved
I'm sure you meant for a normal length cycle tho
Title: Re:  The New York Headache Center(Follow Up!!
Post by E-Double on Jul 10th, 2004, 12:09am

on 07/09/04 at 20:04:22, Kris_in_SJ wrote:
Like Chris, I'm a little confused.  Did he give you another script for Prednisone?  

Get the Verapamil filled and start it right away.  DO NOT use Imitrex and Zomig within the same 24 hours.  If one if working for you, stick with it and supplement with O2 (you do have it, right?)

If he did give you a script for Prednisone, get it filled and start the taper.  2 tapers within one cycle won't hurt you (though it might make you gain 30 lbs. or so).  By the time the taper is finished, you'll probably know whether or not the Verap is going to work.

If he didn't give you a script for Prednisone, call him in a week as agreed and let him know how you feel.  For me, Verapamil takes a couple weeks to work and I usuallly have to ramp up the dose to 480mg before the cycle is reduced to shadows only.

Good luck - keep us informed.  I'm sending you many hugs, and fervent wishes for the Verap to be the perfect prevent for your cycles!

Kris


No more confusion ;;D

He didn't give script for Prednisone
He did for Veraprimal

I guess I can go between the 2 triptans as long as it's not in 24hr.

I will continue to use the O2

I was under the impression that you needed to be on an agent when starting a preventative med. b/c it "speeds" up the effect (loosely speaking)

I guess this is not so. So dependening on how I feel within the week I will call him and let him know.

& I can't deal with 30lbs. LOL I already put on 20+ from the prednisone and depakote.

Thanks again. I hope that was clearer.

You are all awesome

Eric
Title: Re:  The New York Headache Center(Follow Up!!
Post by Superpain on Jul 10th, 2004, 5:10am
The "agent" is the pred, right?

The pred is used to knock the cycle out, hopefully ending it, with the help of verap.

It's used to get immediate relief before the verap or any other preventative have time to start working.
Title: Re:  The New York Headache Center(Follow Up!!
Post by E-Double on Jul 10th, 2004, 5:22am

on 07/10/04 at 05:10:13, Superpain wrote:
The "agent" is the pred, right?

The pred is used to knock the cycle out, hopefully ending it, with the help of verap.

It's used to get immediate relief before the verap or any other preventative have time to start working.

good morning I hope,

Yes (the pred is the agent) but it wasn't perscribed by this guuy. So many questions dude. could be I just finished a taper on monday.

I'm gonna try to catch a bit of ZZzz Got hit hard @ 330 .
O2   :( then Im :( then O2 then rocking and hitting myself behind my ear and neck helped.
Finally just feel worn out an dshadows.

You rule Superpain!!
Always a comfort. thanks
Title: Re:  The New York Headache Center(Follow Up!!
Post by UN_SOLVED on Jul 10th, 2004, 5:42pm

on 07/10/04 at 00:09:36, E-Double wrote:
I guess I can go between the 2 triptans as long as it's not in 24hr.


IMHO ...

You need to pick 1 or the other. Decide which one works better for you and use it. Leave the other on a shelf just incase you completely run out and have to use it.
Don't mess around with both

Unsolved
Title: Re:  The New York Headache Center(Follow Up!!
Post by Kris_in_SJ on Jul 10th, 2004, 8:38pm
Ditto to Un-Solved.  Like I said earlier, pick the one that works best and stick with it - supplement with O2 if needed.

In case it might clarify - Prednisone will often knock down or (sometimes) completely knock out CHA's (temporarily only!).  This is particularly useful when you're waiting for a prevent like Verapamil to "kick in" and do it's thing.  For a lucky few, when the Prednisone is done, the Verap has done it's thing and and cycle is broken!  In many cases it's a matter of timing.

Since high doses of Depakot haven't worked for you, hopefully the Verap will.  Another Prednisone taper might give it the time that's needed.

Hugs and good wishes!

Kris  
Title: Re:  The New York Headache Center(Follow Up!!
Post by Miasma on Jul 20th, 2004, 11:59am
 You asked about Dr. Mauskop of the NY Headache Center.  While this is a late reply -- and my first as a registered ch.com member -- I wanted you to know that he is my former headache doctor and, in my opinion, is a mensch (great guy), whose basic competence and empathy far outweigh any over-interest he might have in alternative therapies.  He's one of the two best headache doctors I've had (and as a thirty-year CH sufferer, I've had more than a few), and the only reason he's not my doctor now is that my health insurance plan no longer covers the cost of his services.


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