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Topic: The New York Headache Center(Follow Up!!) (Read 932 times) |
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miapet
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Re: The New York Headache Center
« Reply #25 on: Jun 30th, 2004, 10:21pm » |
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on Jun 30th, 2004, 5:43pm, 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.
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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
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| « Last Edit: Jun 30th, 2004, 10:21pm by miapet » |
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E-Double
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Re: The New York Headache Center
« Reply #26 on: Jul 1st, 2004, 1:41pm » |
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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
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miapet
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Re: The New York Headache Center
« Reply #27 on: Jul 1st, 2004, 3:10pm » |
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I'm only going to say . .good luck . . .
miapet
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E-Double
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Re: The New York Headache Center: Follow up!
« Reply #28 on: Jul 9th, 2004, 5:47pm » |
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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
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Superpain
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Re: The New York Headache Center(Follow Up!!
« Reply #29 on: Jul 9th, 2004, 5:56pm » |
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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.
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Chris
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Kris_in_SJ
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Re: The New York Headache Center(Follow Up!!
« Reply #30 on: Jul 9th, 2004, 8:04pm » |
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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
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UN_SOLVED
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Re: The New York Headache Center(Follow Up!!
« Reply #31 on: Jul 9th, 2004, 9:34pm » |
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on Jul 9th, 2004, 8:04pm, 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 |
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LMAO .... wanna know how many times I've done steriods this cycle ?? 
Unsolved
I'm sure you meant for a normal length cycle tho
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E-Double
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Re: The New York Headache Center(Follow Up!!
« Reply #32 on: Jul 10th, 2004, 12:09am » |
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on Jul 9th, 2004, 8:04pm, 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 |
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No more confusion 
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
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Superpain
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Re: The New York Headache Center(Follow Up!!
« Reply #33 on: Jul 10th, 2004, 5:10am » |
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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.
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Chris
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E-Double
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Re: The New York Headache Center(Follow Up!!
« Reply #34 on: Jul 10th, 2004, 5:22am » |
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on Jul 10th, 2004, 5:10am, 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.
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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
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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UN_SOLVED
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Re: The New York Headache Center(Follow Up!!
« Reply #35 on: Jul 10th, 2004, 5:42pm » |
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on Jul 10th, 2004, 12:09am, E-Double wrote:
I guess I can go between the 2 triptans as long as it's not in 24hr.
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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
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Kris_in_SJ
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Re: The New York Headache Center(Follow Up!!
« Reply #36 on: Jul 10th, 2004, 8:38pm » |
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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
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Miasma
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Re: The New York Headache Center(Follow Up!!
« Reply #37 on: Jul 20th, 2004, 11:59am » |
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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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