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        Cluster Headache Help and Support >> Cluster Headache Specific >> Going to a Neuro
        
(Message started by: ScottEinDC on Jan 18^th, 2006, 2:54pm)

Title: Going to a Neuro
Post by ScottEinDC on Jan 18^th, 2006, 2:54pm

My GP Doc gave me a referral to see Dr. Philip Pulaski, here in Washington, DC. Anyone have any experience, positive or negative regarding Dr. Pulaski?

What experiences do any of you have with the neuro? Should I bring my recent MRI pictures?

Thanks
Scott

Title: Re: Going to a Neuro
Post by Ghost on Jan 18^th, 2006, 3:22pm

Bring the pics, No dealings but dont let him push you around. Come prepared and ready to defend the pain you have. Dont let him make you think it is less than it is ...
Good luck
Mike

Title: Re: Going to a Neuro
Post by E-Double on Jan 18^th, 2006, 3:33pm

Bring all of the information that you have been provided here.

If you do need a recap let me know...shoot me a PM and I'll send you an email of all the literature that should be helpful.

DO NOT LEAVE without Oxygen 'script.

Title: Re: Going to a Neuro
Post by Phil the Desert Rat on Jan 18^th, 2006, 7:12pm

Scott,

How'd your trip to your neuro go? Saw one for the first time today too, mine deferred the O2 until the immitrex has a chance to succeed or fail. Hope you had success!

--Phil

Title: Re: Going to a Neuro
Post by ScottEinDC on Jan 18^th, 2006, 7:31pm

Phil, haven't gone yet...my appointment is about two weeks. In the meantime, my GP is having me try some Topamax, but I'm confused by the instructions for taking it....have to call him back tomorrow.

1 tablet @ bedtime for 1 week
1 tablet twice daily for the second week
1 tablet in AM and 1 at bedtime for the third week
2 tablets twice daily week for and beyond

???it's the second instruction that isn't clear to me. and the fourth....two in the morning, two in the evening? and the pharmacist wasn't a big help.

Title: Re: Going to a Neuro
Post by E-Double on Jan 18^th, 2006, 7:45pm

hold off until doctor clarifies for you!!!

It is a hardcore med.

good luck!

Title: Re: Going to a Neuro
Post by Phil the Desert Rat on Jan 18^th, 2006, 9:36pm

Scott,

Definitely "what E-Double" said! Get clarification from your doc before jumping into the topamax!! I sure hope you find relief with it. And be firm about the O2...I was not, and so it requires another visit (though I have followups scheduled already). O2 seems to work wonders for so many on here. Good luck!

Phil

Title: Re: Going to a Neuro
Post by BarbaraD on Jan 19^th, 2006, 5:19am

I've had better luck taking the FULL dosage at night before bedtime. This stuff has some side effects and people get "dopey" when they take it in the daytime. If you take it all at night you sleep off the dopey effects. I've been on it since 99 and have found that taking it at night kills a lot of the side effects.

Hugs BD

Title: Re: Going to a Neuro
Post by E-Double on Jan 19^th, 2006, 8:55am

If you are just shadowing and have not had full blown hits in a while (based upon your other thread), maybe wait on the Topomax.
For many (myself included) there are rediculously adverse side effects thus giving the med the nickname Dopeymax. Not all experience it though.

Good luck and be well

Title: Re: Going to a Neuro
Post by ScottEinDC on Jan 19^th, 2006, 9:05am

E-Double....it was only yesterday that the shadows didn't become full on CH hits! I've already had one hit this morning from our reliable friend, so I'm going to get started on the Topamax in the meantime....historically, my cycle should be ending, well, it should have ended about a month ago, so we're just going to have to monitor this thing closely.

My pals are going to love me on a drug nicknamed Dopeymax...HA! If only they really understood why I'm on it in the first place...!

Title: Re: Going to a Neuro
Post by E-Double on Jan 19^th, 2006, 9:18am

on 01/19/06 at 09:05:59, ScottEinDC wrote:

Feel good Scott!
There are so many difficult situations to be made when it comes to dealing with this nightmare.
I am chronic going on 2 years. Before this cycle my previous episodes never lasted more than a month.
I have been on every damn med throughout this cycle and finally in the beginning of December I decided that I was going to detox regardless of outcome, regardless of whether I will attempt an alternative or not.
I am currently down to 200 mg. of verapamil from nearly 600.
I just couldn't deal anymore with potential side effects and with the side effects that I have had from all of the other meds. the worst for me was Topomax but I will not try to sway anyone against it for we are all different!I do not use my abortive meds anymore though I sometimes come close, I suck it up and use my oxygen and that's it. For the most part it is near flawless as an abortive while other times I still have that hour plus attack that just won't break.
Personal decisions that are difficult for us and for those around us to accept and deal with.

I wish you the very best and hope that your cycle does end ASAP!

Eric