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(Message started by: tpitts77 on Nov 16th, 2004, 1:26pm)
Title: Narcs, do they woork?
Post by tpitts77 on Nov 16th, 2004, 1:26pm
Has anyone had any luck using any Narcs ( Percocet, Oxycodone, etc) in an abortive therapy?  I tryed Percocet before I was properly diagnosed and it didn't help the CH at all.  I always do a taper of prednisone when I start to go into a cluster and it almost always stops it.  But my doctor has been worrying about the amount of Prednisone I have taken and the side effects of use.  He offered me Narcs last time they got bad, but I asked him to just stick to the Prednisone.  I have done some research on the side effects of Prednisone and am starting to worry a bit also.  Would it be worth stopping what works and going on a Narc or should I stcik with the Prednisone and its horrible long term side effects???

Just wondering if any has any advice???
Title: Re: Narcs, do they woork?
Post by tpitts77 on Nov 16th, 2004, 1:28pm
Oh yeah, I am on Verapamil and Indocin for preventative.  Imitrex injections for abortive, until I have A couple bad days in a row.
Title: Re: Narcs, do they woork?
Post by nani on Nov 16th, 2004, 2:22pm
have you tried oxygen as an abortive? narcotics won't work. long term use of any steroid wreaks havoc on your body. any prednisone treatment should be done as a taper, taking less and less each day. talk to your dr about oxygen.  good luck and welcome.
Title: Re: Narcs, do they woork?
Post by debco on Nov 16th, 2004, 2:26pm
I tried Percocet, and if anything it prolonged a CH for way longer then usual, and made me feel yucky.  I feel bad enough during/after an attack that I don't want any narcs in my system. Last few nights I just started O2 and they seem to abort within 5-7 minutes. I am able to back to sleep right away. But did wake up on the hour with another one but used O2 again. Crazy stupid headaches!!! I hate them!!!
Title: Re: Narcs, do they woork?
Post by tpitts77 on Nov 16th, 2004, 2:39pm
I ahve tryed O2 it only aborts the CH, if I catch it early, and thenstill it only works about half the time.  Since I've been on the perventatives, the chs only get real bad a couple times a year (was chronic for 6 years), but when they do I'll have one ch every 2 hours almost to the minute.  The only thing I have found to stop them when they get like that is the Prednisone.  But like I said i'am looking for some other alternatives to suggest to my doctor.
Title: Re: Narcs, do they woork?
Post by don on Nov 16th, 2004, 2:39pm
The simple answer is........no.

Skip the narcs and try the medications that are proven effective for CH. Both abortives and preventatives.
Title: Re: Narcs, do they woork?
Post by tpitts77 on Nov 16th, 2004, 2:49pm
What are some abortive drugs/therapy, besides O2 and Imitrex, that has worked for you folks????
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 16th, 2004, 3:02pm
I would start by checking that your Verapimil dosage is right, which it almost certainly isn't. If it is working it should stop the attacks, and you DEFINITELY wouldn't be getting them every two hours.

Can I be nosy?

How long are your attacks lasting on average?

What type of Verap are you taking and at what dose and how often?

Wendy

P.S. Indocin isn't a preventive, it also isn't something to be taking long term. If it is going to work, it works very quickly
Title: Re: Narcs, do they woork?
Post by unsolved1 on Nov 16th, 2004, 3:31pm
I haven't found a narcotic that will help me yet ... and I've tried LOTS !!

Unsolved
Title: Re: Narcs, do they woork?
Post by tpitts77 on Nov 16th, 2004, 3:41pm
Attacks last 30-40 min.

2-3 tabs of 240mg verapamil SA daily,  I start at 3 and go down to 2 when I am no longer in a cycle.

2-3 caps 75 mg indocin SR daily.  I start at 3 and go down to 2 when I am no longer in a cycle.

The verapamil by itself didnot work.

When on prednisone I do not take the indocin.

Imitrex and O2 to abort.

Two years ago I was chronic have 2-8 CHs daily, since on this regiment I have maybe 1 a week and a couple times a year I have the severe attacks every 2 hours.  That's when I use the prednisone.
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 16th, 2004, 3:51pm
That isn't the recommended regime for Verapimil. The most important thing is that you should have the Normal release NOT sustained or slow release form, and it should be taken in 80mg tablets at regular intervals throughout the day to hold the Verap levels up and steady. It is then increased every two weeks until the attacks stop, up to 960mgs a day, although I know quite a few people who take more than this quite safely with their neuro's approval.

I am about to email you the recommended Verap regime we use over here from our "guru"- the best in the world. It doesn't mention the type of Verap but it does detail the dosage and how it should be increased until prevention is achieved.

It sounds suspiciously like you may have moved from chronic to episodic, which would be great.
Have you ever tried coming off all the drugs between cycles, as Verap can often work better if you have a break from it. In any case it is recommended that all users take a "holiday" from it every few years.

Wendy
Title: Re: Narcs, do they woork?
Post by don on Nov 16th, 2004, 7:59pm

Quote:
That isn't the recommended regime for Verapimil


Wendy, thats the dosage I use and it works fine.


Quote:
The most important thing is that you should have the Normal release NOT sustained or slow release form


That should make no differance at all. It takes 10-14 days to reach a theraptutic level. Once thats reached you should be able to sustain that level with either normal or sustained. I use sustained release with no problem.
Title: Re: Narcs, do they woork?
Post by unsolved1 on Nov 16th, 2004, 10:14pm

on 11/16/04 at 15:51:02, pubgirl wrote:
. It is then increased every two weeks until the attacks stop,


Or you heart stops  ;)

PS. Wendy, your 'regime' would kill me

Unsolved
Title: Re: Narcs, do they woork?
Post by kissmyglass on Nov 17th, 2004, 12:10am

on 11/16/04 at 15:51:02, pubgirl wrote:
it should be taken in 80mg tablets at regular intervals throughout the day

Wendy


HUH??
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 17th, 2004, 2:40am
Unsolved

It isn't MY regime! (christ, surely you don't think I'm THAT arrogant) Only telling you what Goadsby and The London Institute of Neurology say. He and they have probably treated more Ch patients than most people in the world and the advice is that the slow release given in 240mg tablets is much less effective than the normal release given in 80mg doses at regular intervals. We have had countless sufferers who have said that Verap doesn't work for them, but when they change to this dosing and the Normal release, suddenly it does work.

Also it isn't dosed indefinitely (as you well know Unsolved ;;D) ECG's are done at each two week increase to a theoretical maximum daily dose of 960mgs.

Don
I'm glad the dosing works for you, but it patently isn't for tpitts, hence the suggestion he tries this way of taking Verap. Truly, it can make all the difference if Verapimil doesn't seem to be working for someone.

Tpitts
I'm not saying this definitely WILL work, as Verap just doesn't for some people for some reason (and of course some people can't take it) but it may be worth trying to try and block these bad attacks you are having.
Also to stress, the ECG mentioned at each increase in the regime is really important to check that your heart is coping with the increases.

Wendy
Title: tpitts77
Post by Testy1 on Nov 17th, 2004, 3:41am
I've never been prescribed narcs but have tried oxycodone and codiene. On the oxy, I took upwards of 70 mg as an abortant and it didn't seem to do anything at all for the pain. Codiene did much the same at around 250-300 mg dose.
Really, the only thing I noticed was that I was incredibly stoned and still in pain. Also, when marching through the house in the middle of the night, I kept bouncing off walls and door-frames.
I found the whole thing exceedingly unpleasant and wouldn't do it again. I'm a bit scared of narcs anyway, too many horror stories.

Best regards

Jack
Title: Re: Narcs, do they woork?
Post by unsolved1 on Nov 17th, 2004, 5:31pm
Pubgirl,
     Have you ever met Prof. Goadsby ? Me either. But I have met some of the top CH doctors in the US (Dr. Saper, Dr. Rozen, & Dr. Diamond) and they have me on VerapAmil E.R. 180mg twice daily.
That's about as much as I can do.

Plz, before you tell people what doses to take, ask them to see their doc first ;)

Unsolved
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 17th, 2004, 5:46pm
Unsolved

I was assuming (and shouldn't assume) if people were going to get prescribed a different form of Verap they would be getting it from their doctor and talking about it. I forget that people in other countries sometimes just buy their drugs. I wasn't in a million years recommending people change their Verapimil dosage on their own, just that it may be worth discussing this way of doing it if the SR isn't working.

I'm not trying to say this is the ONLY way of taking Verap , but it is one which frequently works for people who had thought Verapimil wasn't working at all when they were taking the SR version in larger doses. I'm not speaking theoretically here either, we have had a lot of evidence from people calling our Helpline who had said Verap failed to prevent, but found it worked when they changed the way they were taking it.

Not sure why it is relevant whether I have met PG or not, but most active OUCH UK members have as he attends our annual meetings and is a wonderful and active supporter of OUCH. I know it sounds sycophantic, but he is a very busy man indeed, but always finds time for OUCH, and I am happy to shout about it as I think it is wonderful that he does this

W
Title: Re: Narcs, do they woork?
Post by Bob P on Nov 17th, 2004, 6:19pm
Left out a small part about side effects.  PG says:

"verapamil

Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved."

At the Vancouver convention Dr. Robinson said that he had patients taking 1120-1200 mg in some cases.

On the original question, Goadsby says:

"Analgesics

Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH."

I always get opiates from my doc but I save them for recreational use after the cluster is over ;;D
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 17th, 2004, 6:25pm
While we are at it, shall I post the two pages of things you shouldn't eat, drink or take when using Verapimil! ;;D


Wendy
Title: Re: Narcs, do they woork?
Post by don on Nov 17th, 2004, 9:42pm

Quote:
Have you ever met Prof. Goadsby ?


I have. Nice guy and I'll bet he'd be the first to tell you that nothing he nor anyone else says about CH is etched in stone except they hurt like hell.
Title: Re: Narcs, do they woork?
Post by Wendy1 on Nov 18th, 2004, 10:15pm
Verapamil (regular) 360mg (1 1/2 pill of 240mg) stopped my full-blown cycle dead in its tracks (after it got fully into my system).

NEVER, ever have I had this happen.  I have taken Verapamil in the past with no luck.  The key to Verapamil working is a high enough dose, which many docs are unfamiliar with and are also skeptical.  Unless you have really low blood pressure, it's fine.

My doc wanted to try SA, I told him, uh no... regular works just fine for me.
Title: Re: Narcs, do they woork?
Post by Wendy1 on Nov 18th, 2004, 10:19pm
Oh, and about the narcs...   I try to have Vicodin on hand(that is when the stingy docs will give you any) so that when I have a h/a I can take one and if the O2, etc. doesn't work, I know that within 1/2 hr to 45 mins, I WILL be getting some kind of pain relief.

WHY OR WHY can't these doctors understand what we are telling them?  They look at me like I'm stupid.

Well I shouldn't say that, my doctor is FINALLY after 23+ yrs beginning to listen to me... somewhat.

Can't live with 'em, can't live without 'em..... :P
Title: Re: Narcs, do they woork?
Post by Versilleus on Nov 22nd, 2004, 1:19am
Narcotics are very controversial at best when it comes to treating cluster pain. Definately research the issue yourself. Find some independent sites that have links to long-term trial studies and the lastest information. Our knowledge of opiods for medical is not what it once was.

Narcotics are useless for being both an abortive and preventitive. The 'ups and downs' of taking opioids tend to be a bit troubling because they do not stay at 'peak efficiency'  for long enough and tend to trail off turn too soon. eg Chronic pain sufferers will tell you Oxycontin die off around the 8 hour mark and can not & should not be taken before 12 hours(without a dr. monitoring the situation). So the possibility of physical withdrawal increases. Demerol is being strongly recommended not to be used for chronic pain. Why I am not completely sure of.   The added downside is by the time the opioid starts working to be effective, that particular may be over. The cluster won't be, usually. The Actiq(Fentynal) lollipop works quite faster that anything in pill form and one would think could be ideal for occassional use. Though I have never known anyone to use it personally.

With that being said if nothing else seems to be working for you, there is no reason for you to spend your life in pain. Some of us have chronic clusters which do not respond well to medications and impact our life in such a way we have no quality of life. Nothing is 100% effective, by itself or in combinations. Right now the best we can hope for is to make life enjoyable again.  I hope and beg there will be some day be a cure but right now no possibility. Don't forget most drugs that have the ability to alter brain chemistry need to be monitored to come off due to the physical and phsychological dependancy . eg steriods, anti-depressants, hypnotics, opioids and so on. The list is long..

If you are experiencing no relief maybe ask your dr. about methadone or the Duragesic(Fentynal, lasts for 2-4 days). That way every attack will help with the 'quality of life' issue. That is why we are all here. To help each other get through this in the best way for each particular person.

Versilleus
Title: Re: Narcs, do they woork?
Post by tpitts77 on Nov 22nd, 2004, 11:22am
The only time I'm thinking about taking some Narcs, is when I am in an extreme cluster when I'm having 5 or more within 24 hours and the Imitrex and O2 are not working anymore.  Usually after about CH number 4 the Imitrex and O2 no longer work and I'm thinking it maybe nice to have some sort of pain relief until I can get my verapamil levels up.  Instead of taking all the prednisone to abort.    Comments?????

pubgirl-

I think my verapamil regime is working.  I went from 2-8 CHs daily to 2-3 CHs monthly.  2 or 3 times a year I have these bad days.  Thanks for the advice though.
Title: Re: Narcs, do they woork?
Post by don on Nov 22nd, 2004, 11:37am

Quote:
Instead of taking all the prednisone to abort.


Give it a chance.
Title: Re: Narcs, do they woork?
Post by jessipo on Nov 22nd, 2004, 11:48am
tpitts--the only thing that's worked for me is going to ER and getting what I call a migraine cocktail.  It consists of Dilauded (up to 4 mg's), phenergan (up to 50 mgs and tell them you have terrible nausea even if you don't), and Tordal (one dose).  I've only had that not work once, but it still gave a tiny bit of relief that time and at least took the edge off, and made me not care about the horrible pain that I was in.  O2 never works for me.  And anything less than dilauded (ie morphine) doesn't work a damn either.  Tell them you're allergic to morphine, demoral and codiene, so they'll give you dilauded (it's a drug that's 100 x more powerful than morphine, but doesn't have the rebound, and doesn't have the addictive properties as strong as morphine's).  Hope this helps.  But, as for at home meds, nothing works for me.  Imitrex helps as an early abortive sometimes and takes the edge off, but usually I still have the h/a.
Title: Re: Narcs, do they woork?
Post by don on Nov 22nd, 2004, 3:17pm

Quote:
Tell them you're allergic to morphine, demoral and codiene, so they'll give you dilauded


I'm a little curious as to how you would know to tell them that in order to get the diluadid?


Quote:
and doesn't have the addictive properties as strong as morphine's


Diluadid is an opiate anelgesic with the same addictive properties as morphine.
Title: Re: Narcs, do they woork?
Post by kissmyglass on Nov 22nd, 2004, 4:49pm

on 11/22/04 at 11:48:51, jessipo wrote:
and tell them you have terrible nausea even if you don't)   ...  Tell them you're allergic to morphine, demoral and codiene, so they'll give you dilauded


Worst advice I've ever seen on this board
Fuckin Idiot...
Title: Re: Narcs, do they woork?
Post by don on Nov 22nd, 2004, 5:35pm
Classic behaviors of a drug seeker.
Title: Re: Narcs, do they woork?
Post by LeLimey on Nov 22nd, 2004, 5:42pm
A while back someone posted saying we needed to cover our backs when giving advice so it couldn't be misconstrued.. at the time I didn't take much notice but how right they were!!
Thanks Don and KMG for making it pointedly obvious this is not the way to carry on
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 22nd, 2004, 6:08pm
This jolly advice comes from someone who claims to have 3 day CH attacks continuously at Kip 10 and above.

::) ::) ::) ::) ::)

if that is the case, I'm the Pope's personal call girl

Wendy
Title: Re: Narcs, do they woork?
Post by LeLimey on Nov 22nd, 2004, 6:10pm
Ooooh Wendy...
I never knew you had such a prestigious job!! [smiley=laugh.gif]
Title: Re: Narcs, do they woork?
Post by nani on Nov 22nd, 2004, 6:15pm
Why Wendy, you skank! (Is he as kinky as he looks?)  ;;D
Edited b/c of DJ's filters
Title: Re: Narcs, do they woork?
Post by pubgirl on Nov 22nd, 2004, 6:17pm
Easiest job in the world. Should have been made redundant years ago but he likes to dream ;;D
Title: Re: Narcs, do they woork?
Post by Jonny on Nov 22nd, 2004, 6:24pm
Fuckin junkie!
Title: Re: Narcs, do they woork?
Post by unsolved1 on Nov 22nd, 2004, 8:28pm
Holy smokes. I have to agree with Kissmyglass on this one. Worst advice I've seen on the MB.

I've tried everything including narcotics. I said they didn't help. What, you don't believe me ??  [smiley=huh.gif]

Clusters are stronger than narcotics !!

Unsolved
Title: Re: Narcs, do they woork?
Post by don on Nov 22nd, 2004, 9:44pm

Quote:
I'm the Pope's personal call girl


Can you get me a job over at the Vatican ?

I wanna be a monk.
Title: Re: Narcs, do they woork?
Post by Kevin_M on Nov 23rd, 2004, 5:29am

on 11/22/04 at 11:48:51, jessipo wrote:
And anything less than dilauded (ie morphine) doesn't work a damn either.


I've finally got my crystal shortwave built that I had ordered and have been working on since 1978.  Hello... Hello... anyone out there???

Wow, this thing seems to only receive signals SENT from 1978.  I can't believe it.  Boy, this message brings back that era of regrettable stupidity from the dark ages of life that reminds me that Steely Dan's "Aja" album must be playing somewhere on the dial.  Crap, I'm getting disco music coming through with this signal too.  Where's the nearest skyscraper to hurl this off of to watch it land and know these kind of messages get their proper treatment.


Kevin M
Title: Re: Narcs, do they woork?
Post by don on Nov 23rd, 2004, 7:31am

Quote:
So, I asked him to just write a note saying that I'm not a drugseeker


Damn Doctor was probably to concerned about his license to practice than he was about this guys Meegraine.

We wonder why some  Docs dont listen? Tactics such as the one above is one reason.
Title: Re: Narcs, do they woork?
Post by Redd715 on Nov 23rd, 2004, 7:51am
[smiley=mad.gif]

Jeeze, sounds like a junkie to me.... [smiley=twocents.gif]
Title: Re: Narcs, do they woork?
Post by marlin on Nov 23rd, 2004, 9:40am
You're not kidding.  

This guy may or may not have clusters but DEFINITELY has a drug problem that needs urgent attention.


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