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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Saw the neuro today
        
(Message started by: 9erfan on Apr 20^th, 2004, 7:14pm)

Title: Saw the neuro today
Post by 9erfan on Apr 20^th, 2004, 7:14pm

Well, I had an appt with my neuro today. Geez, this guy drives me nuts. He wouldn't prescribe the Verap/Lithium combo for me. He doesn't think "that Lithium should be our next course of action", "too many long-term side effects", "blah, blah, blah".
Geez, this guy drives me nuts!

He had given me a scrip for Topomax back in January that I never got filled because I was afraid of the side effects that everyone here complains about. He basically insisted that I try the Topo and that the dosage that I'm starting out I should be fine. Again "blah, blah, blah".

I was going to tell him about shrooms today but didn't work up the nerve.

He also gave me a scrip for Relpax. Did I mention this guy drives me nuts? >:(

Title: Re: Saw the neuro today
Post by pubgirl on Apr 20^th, 2004, 7:44pm

You might have done ;;D

Perhaps he deserves a kick in them!

Wendy

Title: Re: Saw the neuro today
Post by Prense on Apr 20^th, 2004, 7:45pm

Virginia,

My neuro also hesitated with the lith script for me. Finally, I just started on lith on April 13th. It's too early to tell if it is working or not yet. I have gone through periods of light to no attacks. Since last thursday, I have only had a couple of severe attacks, which is very good for me, but as I said...too early to tell. I hope your topamax experience is no where near what mine was.

Hang in there!

Chris

Title: Re: Saw the neuro today
Post by purpleydog on Apr 20^th, 2004, 7:47pm

I once went to an appointment with a pain management Dr. I was actually interviewing him and told him as much, since I had been to a few Dr.'s by then. He didn't listen to anything I said. I told the next doc that, and he didn't believe me! My current doc is very good and listens well. :)
Keep trying.

Title: Re: Saw the neuro today
Post by rbmb on Apr 20^th, 2004, 8:01pm

For what its worth (and I realize everyone's different), I took lithium for quite a while and never thought it helped me much. Had to keep gradually upping the dosage and then had to have blood sample taken frequently (therapudic dose and toxic dose aren't too far apart).
Topomax controlled HAs for the first month or so that I took it, but I suffered the side effects others have complained about (memory loss, confusion). I guess my advice(if you decide to take it) would be to start out with a low dose and see if it helps with HAs and see how the side effects are (they do seem to subside with time).
By the way, I'm a 9er fan too......from way back(even before Montana, Lott and Walsh). Good luck with your headaches.
Rich

Title: Re: Saw the neuro today
Post by Dover on Apr 20^th, 2004, 9:38pm

If your doc is driving you nuts, get a new one. He's not your brother. You can change your doc, you're stuck with your brother.

I am so pissed at my GP that there is no way in hell I will go pack. I am in love with my neuro. She's great.

If he bugs ya, your not going to be communicating the way you need to to make it all work. Dump him on the side of the road.

Title: Re: Saw the neuro today
Post by Renee on Apr 20^th, 2004, 11:44pm

9erfan,

I tried trex and it quit working eventually, had bad reaction to zomig. Relpax has less side effects and does a good job of knocking the ch out but the only problem is it takes awhile as it is in pill form.

get a new doc!

pf times wished your way
renee

Title: Re: Saw the neuro today
Post by CJohnson on Apr 21^st, 2004, 8:26am

on 04/20/04 at 19:14:03, 9erfan wrote:

He had given me a scrip for Topomax back in January that I never got filled because I was afraid of the side effects that everyone here complains about.

Not everyone complains about topamax side effects. Some people tolerate it very well.

PFDANs
-Curtis

Title: Re: Saw the neuro today
Post by Superpain on Apr 21^st, 2004, 5:01pm

I agree, get another neuro...

Title: Re: Saw the neuro today
Post by miapet on Apr 21^st, 2004, 10:58pm

The best advice I had a doc give me was: if your doctor won't listen to you . . .it's time to change docs . . .
*positive light and energy*
miapet

Title: Re: Saw the neuro today
Post by UN_SOLVED on Apr 22^nd, 2004, 12:16am

I took both Lithium and Topamax, at different times. For me, the Topamax side effects were MUCH worse than the Lithium. And we kept the Lithium levels as high as possible which included blood tests every week for awhile. I even reached 'toxic' levels twice with really no bad side effects. On the other hand, Topo made me feel stupid, confused, forgetful, and did I mention I got kidney stones twice !!!???

Unsolved

Title: Re: Saw the neuro today
Post by mucho_pain on Apr 30^th, 2004, 4:29pm

I agree with the gettin a new doc part. I went through with the military docs and now the VA docs. They were always hesitant to try new or different meds.

Finally I told my doc to give me lithium and regular verap after reading different articles from this and other sites. He agreed and said it’s worth a try.

That was April 11th 2002, by the end of April I was relatively pain free.

I do use O2 and imitrex injections when needed, but for the most part just the verap now does it. 360mg twice a day. I weaned of the lith about a month after I went pain free.

I was serious chronic gettin hit with 6 to 8 kip 9'ers a day. I was pretty much at the end of my rope when I finally got on the lith/verap.

All good now.... so far anyway.

Greg

Title: Re: Saw the neuro today
Post by jonny on Apr 30^th, 2004, 6:21pm

Give me an address, Im gonna put my boot in that Docs ass.

Long term sides from Lith?.....Ive taken 600 mgs every single day for well over a decade and im fine (Did I say that) a blood test every six months is all you need to tell you this. I know diff meds dont work the same on diff people but WTF!.....Dude should have at least let you try......THE SCUMBAG!

......................................jonny

Title: Re: Saw the neuro today
Post by Tiannia on Apr 30^th, 2004, 7:07pm

Jonny at least you did not say that you are normal. ;;D

Virginia, find a new doc. If you are scared to take a med, they should not force you to, 1, and 2 you should be working with your doc as you are one of his subjects but a patent.

I hope htat the topomax works for you. My experience was very bad. Felt like food poisoning, vomitting, cramping the whole nine yards. Started within 24 hours of taking my first dose and stoped within 24 hours of my last dose and I was only on it for 16 days. It did seem to make the HA kless severe, or I just hurt all over and could not tell when one HA sarted and stopped anymore.

Keep close tabs on the dose and work up slowly. Some peole swear by Topomax....

PF Wishes to you hun.
-Tia

Title: Re: Saw the neuro today
Post by HypnoticFreddy on May 1^st, 2004, 12:18am

Doctors like 3000 years ago would tell their ailing patients to go swim daily in the natural spring waters. Why? One belief is that they were loaded with lithium salts, like lithium carbonate. Like the form we take today for all the conditions it is used for.

So, perhaps, daily bathing in these spring waters could have indeed been a pre-historic use of lithium for a lot of disorders. I read something about it somewhere. Very interesting.

Yes lithium is toxic, and you do need occasional blood work-up. All I know is I have had 4 episodes of CHs. I am 31. Started at age 24. They last for 3-4 months 1-6 per day, yada, yada, yada. THE PAIN. THE GODDAMN PAIN. If lithium was not "allowed" to be prescribed when for so many (and I mean other Neuros) suggest, you must try it. I would try any med to defend against this thing this wicked thing in the eye of a CH as I KNOW IT!

-Scott

Title: Re: Saw the neuro today
Post by Sean_C on May 1^st, 2004, 11:45am

Hi V

Lith works great for some but it killed me. I got nastey and my skin on my skull twitched wicked uncontrolably. And I still got hit hard so it didn't matter anyway. Side affects suck just as bad as CH. Only not as painful.

Hope something works for you soon

Kiss kiss

Sean

Title: Re: Saw the neuro today
Post by Ann on May 4^th, 2004, 11:00am

Hey Virginia!

Sorry your neuro is such a prick! [smiley=confused2.gif]

I was on the lithium/verapamil combo for quite a while and it did wonders for me. No side effects!! Like Jonny said, just had to have regular blood test to make sure everything was ok. If you can, change doc's...this one sounds like a creep!

hugs
Ann

Title: Re: Saw the neuro today
Post by 9erfan on May 4^th, 2004, 12:23pm

Yes, this Dr. is a DOOFUS. But I don't think changing Neuros is going to do me much good because I am in an HMO in a particular "group" where all the neuros are in one office. So I just think it will be more of the same. I mean they all have access to my records online (they even read all my primary physicians records online) so they will just all back each other up I fear.

The good news is...I seem to be getting some relief from Topamax....the jury is still out...and I don't want to jinx myself...so...shhhh...don't tell anyone...ok?

Title: Re: Saw the neuro today
Post by Ann on May 4^th, 2004, 1:56pm

Your secret's safe with me!!! ;)

hugs
Ann

ps...good news!!!