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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Saw a NEW Neuro Yesterday.
        
(Message started by: mynm156 on Apr 29^th, 2006, 3:51pm)

Title: Saw a NEW Neuro Yesterday.
Post by mynm156 on Apr 29^th, 2006, 3:51pm

I am convinced that especially for those of us who are chronic that the Doctors are intimidated by our problem. I saw a new one yesterday and he took good notes asked all the right questions but when it came time to do something he descided to go for Gabapentin AKA Neurontin He wants me to ramp up to 1800mgs in a month and a half. Has anyone else tried this one before? How did it go, what was your dosage, any wonderful side effects I should know about? He then said come back in three months. That kinda of shocked me. This is because I have had such bad sideeffects from Topamax and Zonegran (Neurontin is another kind of these med) I personally believe that a month is about Max in the begining that a new doc should go without seeing us. However, it gets worse. When I then told him I needed my Trex, Verapimil, etc. etc. He said that my PCP was perscribing that and that he would leave those meds up to him. So let me get this straight. He basically passed the buck on treating my headaches back to my PCP? Is that not how it seems? I called my PCP and he was floored. However, He was great ( you might remeber this was the guy who use to be a Chiropractor Who I was very excited about seeing because of the interest he and his wife showed in my headaches) He said to come in this week and we will talk about it. I would honestly be happy with a PCP that would work with me, listen over ANY so called specialist. I had one before but he does take my new insurance.

Oh well Par for the course as far as we Clusterheads go huh?

Good Vibes All

MYNM156

Title: Re: Saw a NEW Neuro Yesterday.
Post by Karla on Apr 29^th, 2006, 8:08pm

Yes I had a neuro who basically wanted my pcp to treat me and write all the scripts. Good thing I also had an understanding pcp that was willing to write whatever script I wanted and I just went down the list of things to try. I tried neurontin at a high dose like you for ch and the only affect I had was my hair started to fall out. Not alot but a little. I also took high amount of this 15 years ago for epilepsy and had no problems with it then. I think it is a safe medicine that has been on the market a long time. Good luck.

Title: Re: Saw a NEW Neuro Yesterday.
Post by Kris_in_SJ on Apr 29^th, 2006, 8:21pm

The reason I stopped going to my neuro was for just the reason you said. He was only interested in prescribing "new" things and left the rest to my family doc.

Like Karla, I've given up all neuros and work with my GP. He's willing to try anything (within reason) that I suggest, and has visited this board at my suggestion to learn more.

Mind you - I'm not chronic - but I still believe that a knowledgeable and empathetic GP can often be your best bet.

I took Neurontin for a short period of time for a totally different problem. I had to stop taking it because of severe diarrhea - and that was at a much lower dose. You might want to try a PM to Nani. I believe she was taking it at high doses at one time.

Hugs,

Kris

Title: Re: Saw a NEW Neuro Yesterday.
Post by Garys_Girl on May 3^rd, 2006, 11:38am

In this article:

http://www.brightok.net/~mnjday/chtherapy.pdf

it says that in an open label study (with 8 patients), at 900mg of gabapentin, all 8 became pain free within 8 days of starting therapy.

It is "an anticonvulsant that is chemically unrelated to any other anticonvulsant or mood regulating medication," and " Gabapentin received final approval for marketing in the USA on 30 December 1993 and is labeled only for use as an anticonvulsant. It is also widely used to treat individuals suffering from many kinds of pain problems, tremors, restless legs syndrome, hot flashes associated with menopause, and various psychiatric disorders." http://www.psycom.net/depression.central.gabapentin.html

It supposedly has a "relatively benign side-effect profile."

Laurie

Title: Re: Saw a NEW Neuro Yesterday.
Post by Charlotte on May 3^rd, 2006, 3:54pm

Good luck.

So is the former chiropractor at least willing to help you? They don't really hear when they listen, do they?

Charlotte

Title: Re: Saw a NEW Neuro Yesterday.
Post by Gator on May 3^rd, 2006, 7:50pm

It works for some people. I tried it for six weeks at 1200mg - no effects or side effects.

Sorry to hear the new Neuro sucks.

PF Vibes.

Title: Re: Saw a NEW Neuro Yesterday.
Post by BlueMeanie on May 3^rd, 2006, 9:52pm

He didn't want to give you trex because he knew your primary doc already prescribes you trex. Am I confused or is the reason for finding another doc is to find other meds that may help you other than what you already have ?

Title: Re: Saw a NEW Neuro Yesterday.
Post by MJ on May 4^th, 2006, 2:00am

Mynm, my wife was on neurontin for other extreme nerve pain.

It sent her into an extreme depression, untill she finally got off it. Wasnt fun for me either.

Do a search on it you will find some nasty stories if you dig deep. I think this particular drug is lacking in warnings as to side effects and overly prescribed due to a huge marketing program. Then again some say it works.

Title: Re: Saw a NEW Neuro Yesterday.
Post by mynm156 on May 6^th, 2006, 2:12am

Just started the stuff kinda drowsy other than thtat? We will see.

Title: Re: Saw a NEW Neuro Yesterday.
Post by chewy on May 6^th, 2006, 9:19am

Just stick with the PCP.

My neuro is willing to try anything that I suggest and my primary will fill whatever I need if the neuro is unavailable. I'm one of the lucky ones but it took 30 years to be in my position.

Neurontin was no help to me.

Title: Re: Saw a NEW Neuro Yesterday.
Post by mynm156 on May 6^th, 2006, 1:54pm

on 05/03/06 at 15:54:46, Charlotte wrote:

Good luck.

So is the former chiropractor at least willing to help you? They don't really hear when they listen, do they?

Charlotte

No The former Chiropractor is GREAT. He was really dissapointed with what I was telling him about this Neuro. So I went back to him and he has agreed that giving my history of bad responces to these types of drugs in the past and that it was new he wanted to see me back in a couple weeks andthen will cover me monthly until the appointment with the nuero comes back around. the Chiropractor/PCP is now a DO but he is open to other ideas and I think has GREAT potential as a physician. Having a Clusterhead in his list of patients can only open his eyes a little more I HOPE!!The only side effect so far is DROWSNESS. Shit I didnt wake up until 1030 today and so CRAZY A$$ dreams!
Good Vibes my Brothers and Sisters in Pain

MYNM156

PS Chewy 30 years or not you SUCK! Atleast I am half way there if I could only find the Nuero who would try anything I want and not just throw the same ole crap around! Do you have a CT scan? How About and MRI? Blood Work? Lets repeat all that and compare it to the others for changes! UHG I guess I should be happy anther couple doses of X RAYS and I get the free knives!

Title: Re: Saw a NEW Neuro Yesterday.
Post by sandie99 on May 7^th, 2006, 3:24am

I'm sorry to hear that! :(
Luckily you don't have to rely on that neuro!
I hope that you'll be PF, soon... [smiley=hug.gif]

The last neuro I saw wanted me to try a new med if ch returned... Well, I had other thoughts (I've had enough of side effects in the past, thank you very much). That's why I didn't go back to neuro this time around - I decided to trust the only "neuro" who will truly listen to me and want the best for me - myself.

This is day 12 since the last ch hit. I know that Red Bull and other energu drinks don't work for anyone, but they did wonders for me. :)

Best wishes & PF times,
Sanna