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        New Message Board Archives >> 2004 Posts >> Should I retry medications to see if they work? 
        
(Message started by: Karla on Sep 25^th, 2004, 7:21pm)

Title: Should I retry medications to see if they work?
Post by Karla on Sep 25^th, 2004, 7:21pm

I was chronic for 6 years. In March my ch stopped. While I was chronic I tried every medicine under the sun and nothing worked except for the duragesic patch. I went 6 months with no ch. Now my ch are acting up again. They started back up again a month ago. They started out slowly just a couple a day and low intensity 6-7 on pain scale but are now back up to 8 a day and all 10's like when I was chronic before. The ha clinic I was going to and the neuro I was seeing there closed its doors for a year to relocate and hire 2 new drs to replace the old ones. So all I have is my GP who I started with a year ago. So he doesn't know my case well. I see him on MON. to discuss my ha returning and what to do about them. I shouldn't be taking so much imitrix. I need a preventative.

My question to you is, Do you think I should retry all the meds I tried before as a chronic person because they may now work as an eposodic or do you think if they didn't work before they probably won't work now? I know that the patch works to prevent my ch for me and gives me my life back. Do you think I should use that for a couple of months and go off of it and see if I am still having clusters. And if I am not stay off patch if I am go back on patch. I just don't know what to do and need your opinions and what you would do. Thanks guys. This really sucks!

Title: Re: Should I retry medications to see if they work
Post by Redd715 on Sep 25^th, 2004, 7:27pm

What patch are you talking about Karla? Sorry but I'm not sure what you mean?

Title: Re: Should I retry medications to see if they work
Post by Karla on Sep 25^th, 2004, 7:29pm

Duragesic patch. Fentanoyl, it is a strong narcotic. But works for me to stop clusters dead in their tracks.

Title: Re: Should I retry medications to see if they work
Post by Redd715 on Sep 25^th, 2004, 7:33pm

If it's working I'd say stick with it and don't change a thing.

Title: Re: Should I retry medications to see if they work
Post by Karla on Sep 26^th, 2004, 8:36am

bump. Come on guys I really need some feedback here in this delema.

Title: Re: Should I retry medications to see if they work
Post by Kevin_M on Sep 26^th, 2004, 9:02am

on 09/25/04 at 19:21:41, Karla wrote:

[color=Purple]but are now back up to 8 a day and all 10's....
..........I shouldn't be taking so much imitrix. I need a preventative.

This sounds familiar, just like my cycles. Do whatever will help you best. I'm still working with prevents that help very little, but I'm hoping to keep experimenting next time. My only sure way of keeping them down is when the cycle ends. If you know something works for you, it is hard to advise experimenting again, like I do. I added oxygen to not depend so much on trex.

best to you karla

Kevin M

Title: Re: Should I retry medications to see if they work
Post by Svenn on Sep 26^th, 2004, 9:31am

I say go for the patch Karla.not sure what dozage you are talking about though.BUT you know that worked last time.

Just my 2 cents worth

Svenn

Title: Re: Should I retry medications to see if they work
Post by Marc on Sep 26^th, 2004, 10:24am

Karla,

First, I'm sorry to hear that they have returned. I remember what you were going through way back when nothing was working until you went with the patch.

Only you know what effect the Fentanoyl had on you, and if it was a problem. I can't give an unbiased opinion, because I'm strongly against narc's for CH.

Because it's been awhile since you tried the conventional preventatives, it's quite possible that they could work this time. You already know the list of meds -it makes perfect sense to try them again!!

Best of luck

Marc

Title: Re: Should I retry medications to see if they work
Post by Mr. Happy on Sep 26^th, 2004, 1:05pm

on 09/26/04 at 08:36:28, Karla wrote:

Come on guys I really need some feedback here in this delema.

Karla, I think you ought to be our new CH poster girl. In spite of your dealing with this for years, being here at CH.com for years, reading all the info, trying all the meds, knowing the program........onset of a cycle can still drop the best informed, strongest human to their knees in a FLASH.

Are you able to deal with the days, weeks and months of agony Beta testing all the cocktails again? Can you get enough abortives to keep you sane until something works? Should you go right back to the tried and true Patch, and have done with it?

Damned if I know. That's why we're all still here. That's why the sign is still lit, the door's still open, and new volunteers swell our ranks every day.

Let's do lunch,
RJ

Title: Re: Should I retry medications to see if they work
Post by Charlie on Sep 26^th, 2004, 2:57pm

I've not had much experience with newer drugs but from what I've read, some of this stuff has an on and off effect. As long as you don't go nuts or conflict, I don't see a problem.

Just me though.

Charlie

Title: Re: Should I retry medications to see if they work
Post by Callico_Kid on Sep 26^th, 2004, 8:10pm

Hi Karla,

Glad you had the break, and wish it had stay away.

Having had no experience with the patch I can't speak to it, but it WORKED. I think I would try it again first if the side effects are not excessive.

Can you mix preventatives with it?

Having no knowledge does not keep me from having an opinion. ;;D

Praying for you.
Jerry

Title: Re: Should I retry medications to see if they work
Post by thebbz on Sep 26^th, 2004, 8:20pm

Karla,
Not a pro myself, but dealing with the GP at this time through all youve been seems to me a waste . If it were me I would see the GP long enough to get a referral to the neuro. Best of all for you!! Hope you kick the demon down. Peace.
BB 8)

Title: Re: Should I retry medications to see if they work
Post by BlueMeanie on Sep 27^th, 2004, 3:08pm

Sorry to hear that Karla. I was sooo happy for you when you posted that you finally went PF. Hope this is just a short episodic cycle and you become PF soon.

As far as the meds go. I'd stay on the patch if it works. As soon as it quits working, STOP taking it. Then go to another prevent. Maybe you can get a prevent while you're at the GP so you'll have it on standby if the patch quits working. Probably Verapimil seems to be the best prevent from all that i've read here.

Good Luck To You. PFDAN

Title: Re: Should I retry medications to see if they work
Post by echo on Sep 27^th, 2004, 3:26pm

If it works for me I keep using it until it quits.

As far as re-trying older meds. When what works quits, thats all you have left. He is a mutant SOB, what works quits, what did once could again.

Title: Re: Should I retry medications to see if they work
Post by Jeepgun on Sep 27^th, 2004, 3:51pm

on 09/27/04 at 15:26:02, echo wrote:

If it works for me I keep using it until it quits.

As far as re-trying older meds. When what works quits, thats all you have left. He is a mutant SOB, what works quits, what did once could again.

This was my thought, as well. Very best wishes and vibes to you, Karla.

-Frank

Title: Re: Should I retry medications to see if they work
Post by Jayne on Sep 27^th, 2004, 3:53pm

You could try the verapamil & Lithium combo again to see if it works. If not I would go back to that patch.
I am hoping you stay episodic.
As Kevin M said to you, I would fill up on 02 so you don't have to take the imitrex all the time.
Your in my thoughts Karla.

Title: Re: Should I retry medications to see if they work
Post by Karla on Sep 27^th, 2004, 4:39pm

Well the dr and I opted to go back onto the patch. O2 quit working for me about 4 years ago. I have tried it intermitetly since then but it just doesn't work for me any more. Verapamil caused me to have an irregular heartbeat and dr said to stay off it. Lithium helped some for a couple of years but then quit working. I have tried that since off and on and had no luck with it anymore. So we decided to go with what we knew worked best. Thanks for all your words of wisdom. I really appreciated them.

Title: Re: Should I retry medications to see if they work
Post by Marc on Sep 27^th, 2004, 4:44pm

Probably makes the most sense to go with what you know works. Best of luck Karla - hoping they go away again soon.

Marc

Title: Re: Should I retry medications to see if they work
Post by Ree on Sep 28^th, 2004, 9:10am

If you think you can stop the cycle with that patch... that is what I would do regardless of the narcotic value. You might be able to stop the cycle from getting worse.
Have you ever tried Neurontin... Dave put off his cluster cycle one time for about 7 months by starting the Neurontin after the first attack. We thought it was a random hit... He didnt get them full force until July after the convention that year.and they only lasted 10 weeks compared to a previous 7 month cycle....... He used 02 also... and we kept the tanks here as lucky charms for 6 months after the cycle. (I know cuz I paid for it just the same)lol Good luck Karla sorry you are suffering again... love to you and Hi to Ted..........ree

Title: Re: Should I retry medications to see if they work
Post by Karla on Sep 28^th, 2004, 10:43am

Wow I am glad to hear that neurontin actually worked for Dave and gave him a break. I tried it and it did nothing for me. It is a great drug. I used to take it years ago for my epilepsy. One of the few drugs I have taken with no side effects.