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Topic: When Nothing Works... (Read 716 times) |
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lrobb98
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When Nothing Works...
« on: Dec 13th, 2002, 11:28pm » |
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The question frequently comes up, What to do When Clusters are bad and Nothing Works...I think that there are a number of options(all of which I do comment on on http://www.headachedrugs.com)...these include long-acting opioids, occipital injections, Botox injections, methylphenidate(Ritalin), daily triptans, cocaine nose drops, gamma knife,IV Histamine, IV DHE, etc. Each of these has a certain success rate, but unfortunately, at times, many of these are also failures. L.RobbinsM.D.
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marty
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Re: When Nothing Works...
« Reply #1 on: Dec 14th, 2002, 12:23am » |
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Wow..
You will not see me at your clinic.. to me, what you say and propose scare the daylights out of me.. I hope that you are well insured - I have a feeling that you are going to need it.
Marty
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eyes_afire
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Re: When Nothing Works...
« Reply #2 on: Dec 14th, 2002, 12:55am » |
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Let's not jump all over doc Robbins here. He is a respected neurologist. His book was my first resource concerning CH which finally led me to a proper diagnosis, and for that I thank him. I think his point is that there are some lesser known strategies for the intractable CH cases that have a chance of working. Some of the strategies he listed here have helped some of the clusterheads on this board.
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Bob P
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Re: When Nothing Works...
« Reply #3 on: Dec 14th, 2002, 9:24am » |
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I have to agree with eyes here. You have to take Doc Robbins' post in context, i.e. "When nothing works".
Given the pain of clusters, I'd have to say whatever works! If you've tried all of the more common, safer treatments and they don't work. Then maybe it's time to bring out the big guns, the more drastic treatments. This is a decision each sufferer has to make for themselves.
I wuld not try the treatments the Doc mentions until I have exhausted all of the more common treatments, but if they didn't work, I would seriously consider those mentioned by the Doc.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Hound_Dogg
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Re: When Nothing Works...
« Reply #4 on: Dec 14th, 2002, 9:40am » |
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A cluster sufferer will try anything for relief...Especially when the normal (Made for Migraine) drugs, do not work. i.e. The triptans. And God help us, when O2 does not work.
We need Doctors that will try the other treatments, should the normal fail for us.
If the normal drugs work for you...Great. But if they don't, you will be happy that these type of treatments exist.
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marty
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Re: When Nothing Works...
« Reply #5 on: Dec 14th, 2002, 10:03am » |
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Hey..
I am not jumping all over the good Doctor - but I did take the time to actually read what he said. I read all the archived material on Cluster Headaches and what scared me was things like the following quote:
By utilizing smaller doses for short periods of time, we avoid the devastating longer term side effects of the corticosteroids. Severe psychiatric side effects may occur with (even) relatively small doses.
It is good that Dr's try different things but.. Cocaine Noose Drops..?? And the generalization: cocaine is good for CH sufferers..
Maybe.. but not for me.
Marty
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RevDeFord
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Re: When Nothing Works...
« Reply #6 on: Dec 14th, 2002, 10:06am » |
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I have had the oscipital injection. Scared the life out of me and I thought I was drowning, but it worked. I had had a cluster for over 2 hours - most only lasted 15 to 30 minutes. This was a KIP 10. I called the ambulance because I thought I was having an aneurism or something. I lived 25-30 mintues froma hospital.
After accusing me of being a drug addict - imagine that - I finally pursuaded them that this was for real. they took me in and the doctors tried what I had already done. There was a neuro on rotation that night and he came to visit. Said that he had heard of this but had never done it - asked if I was willing and I said "Anything". Within seconds after the lidocaine injection in my nasals the headache subsided.
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I don' know why it hurts, but I pray it will stop.
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Frank
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Re: When Nothing Works...
« Reply #7 on: Dec 14th, 2002, 10:14am » |
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on Dec 14th, 2002, 10:03am, marty wrote:... Cocaine Noose Drops..?? And the generalization: cocaine is good for CH sufferers..
Maybe.. but not for me.
Marty
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I was a cocaine addict from 1981 to 1989, starting with the occasional gram every couple of weeks, progressing to 1/4 to 1/2 ounce per week.
I am not sure of the cause, but I started having clusters shortly after my last coke binge. I can think of four possibilities:
I had clusters all along and being high all the time I didn't remember them.
I was prone to clusters, but the coke kept them away.
Coke caused them.
None of the above.
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| « Last Edit: Dec 14th, 2002, 10:24am by Frank » |
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cootie
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CRe: When Nothing Works...
« Reply #8 on: Dec 14th, 2002, 10:22am » |
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Cool a doc is postin on here !!! Anyhow....not ta get off subject here...but why do docs automatically think yer a drug addict when ya go in the ER for a bad HA.....I went in years back and couldn't even talk it was so bad (meeegrain....I'm CH supporter...first thing they did was look at my eyes and mention drug overdose and leave the room......like they didn't care !!?? Then later got demorol inj and sent me home which barely worked they said it was sinus ???? ....thanx, Pam
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Jimi
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Re: When Nothing Works...
« Reply #9 on: Dec 14th, 2002, 10:48am » |
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Thanks Dr Robbins for taking the time to post on clusterheadaches .com. I know you are a busy man and I don't know how often that you come in here and I don't know when you will be back. If you come back and see this, I have 2 questions.
1. How old is the oldest cluster sufferer that you treat or have treated?
2. And have you ever sent a letter to insurance companies trying to get them to approve more than 6 triptans a month for cluster sufferers and were you successful?
Again, you are always welcome here.
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Hound_Dogg
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Re: When Nothing Works...
« Reply #10 on: Dec 14th, 2002, 10:49am » |
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Cootie,
The DEA holds doctors accountable with who gets narcotics. Let's say that 15 people come in with pain, 14 are in severe pain and one is a drug addict who is "faking" his/her pain.
DOCTOR #1- Believes all his/her patients and gives all 15 patients some Percocet to relieve the pain.
DOCTOR #2-Believes all patients are Drug Addicts and tells them to take some aspirins and get out of my ER.
Now the one drug addict sells his script, gets caught and tells the police he got the Percocet from Doctor #1. Doctor #1 is investigated by the DEA and even if he/she is cleared gets a bad rap and possibly loses his/her license. Even if he/she is cleared, I can bet he will turn into Doctor #2 after it is over.
So, to ensure that the 1 out of 15 people who are Drug Addicts do not get the Narcotics, you will alienate 14 who are actually in severe pain. Yes, it's not fair...but this is our current system. Hopefully, in the future it will be easier to weed out the actual Drug Addicts. Because the current system is barbaric to actual pain patients.
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| « Last Edit: Dec 14th, 2002, 10:52am by Hound_Dogg » |
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cootie
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Re: When Nothing Works...
« Reply #11 on: Dec 14th, 2002, 11:02am » |
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Thanks hound dog.......makes alot of sense ta me.....so if I ever gotta take Bradley in I figure I should have stuff printed out to give them and our doc that treats hims phone number readily available ech.....I got freinds that run there kid to the ER evertime he bangs himself or cries cuz of a cold.....seems ta me that is gettin over on the system esp with a kid they get immediate service and no wait or call the doc and make appointment deals.....seems there gettin over.....I got a bad opinion of that sorta stuff anyhow...then we go in and get treated like shit and gotta wait or left layin there in pain......thanks agin..........Pam (maybe I'm wrong....dunno)
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| « Last Edit: Dec 14th, 2002, 11:02am by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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eyes_afire
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Re: When Nothing Works...
« Reply #12 on: Dec 14th, 2002, 11:40am » |
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Cocaine is occasionally used as an anesthetic in medicine... hence it's schedule II controlled substance designation (meaning that it does have medical uses) instead of schedule I. I believe the cocaine treatment that Doc Robbins mentions involves a sub-euphoric dose dropped into the nostril so as to get back far enough to anesthetize some nerves. In the book that I have, he lists it as a last resort and warns of the possible side effects.
Point well taken, Marty. Uncontrolled cocaine use is dangerous. No clusterhead should ever be foolish enough to think they can self-dose with cocaine. To do so would be akin to opening up a black void and steppin in.
Yes Hound Dogg (good post) and Cootie, it is a shame that many will suffer because of the irresponsibility of the drug addict and the poor policies in place.
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cootie
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Re: When Nothing Works...
« Reply #13 on: Dec 14th, 2002, 12:25pm » |
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Bradley was offer'd syntetic cocaone by the nero he first went to.....many many years ago he'd done it before (the crazy years) and he purdy much knew side effects of goin that route....not a good place ta be. Seems ta me it was a spray of sorts ? Pam
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Mark C
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Re: When Nothing Works...
« Reply #14 on: Dec 14th, 2002, 2:11pm » |
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Thanks Doc for taking time to post.
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| « Last Edit: Dec 14th, 2002, 2:21pm by Mark C » |
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Marc
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Re: When Nothing Works...
« Reply #15 on: Dec 14th, 2002, 6:42pm » |
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I'd have to go with Eyes and Bob P on this. If/when NOTHING else works , I would have no choice but to explore any possible avenue to stay alive........
By the way - Doctor Robbins has also posted under the Medications part of the board recently.
In my ever so humble opinion (not!) - all of the folks here should spend some time there also. You might be surprised at how much you can learn AND help others.
Marc
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Jackie
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Re: When Nothing Works...
« Reply #16 on: Dec 16th, 2002, 2:29pm » |
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Re: What to do when nothing else works...
Blake is at that point now. The prevents (verapamil, lithiumn, prednisone) have stopped working. So now it's to the point of using zomig and imitrex almost like maintenance.....just to survive.
He's sees a new doctor on Monday. Perhaps he can come up with a new regime. Until then it's triptans and more triptans. We see no other way at this time.
Bless his heart....chronic that he is he hasn't been this bad in ten years.
Jacks 
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firebrix
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Re: When Nothing Works...
« Reply #17 on: Dec 16th, 2002, 6:28pm » |
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Thanks for posting Dr Robbins. Its good to see some medical professionals use this site!
We've been at the "nothing works" scenario so long now I appreciate your input, even if some of it sounds too scarey for us.
Thanx for informing us all.
Don't be a stranger!
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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sailpappy
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Re: When Nothing Works...
« Reply #18 on: Dec 17th, 2002, 3:07pm » |
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Dr Robinson,
I have tried every treatment mentioned several times with the exception of the Gamma Knife and then some, extended Prednisone therapy, 2 years on Sansert,periactin,clonidine,Deltazem Caffergot and ergotimes, and on and on and on, 33 years of 7 to 15 attacks a day, so I stopped doing any meds at all in 1988, did a year of Combo interferon/ribovarin therapy in 1998 for Chronic Hep C, but until last october I had done no meds for the headaches at all, my neuro here in Naples put me on Oxy Contin and within days the attacks stopped, I have only had the occassional attack when guilt gets the better of me and I stop taking the med. So the answer to what to do when nothing works for me was Oxy Contin, I don't recomend this for anyone who doesn't have a very involved Doctor and a huge amount of self control, this is a very addictive drug and it would be very easy to slip off the theraputic side into addiction.
I am completely honest with my neuro about it and even though my mind is saying to my More More my common sence says keep it at the minumn amount that is affective. for me that is 60 to 80 mg per day. It's long acting so I usually take 30 mg at 6 am and 30 at 6 pm, occassionally I do 40 which is the dosage that mu Neuro wants me to maintain.
This medication was a Godsend to me, for the first time in 34 years I am pain free, I can't tell you how many times I considered Suicide to end the pain, but I held out and suffered and finally I have a control agent. Not very popular, but guess what, I could care les what anyone thinks, I have been reborn, now if I could just find a fix for the advanced Hep C I'd be in Heaven. Pappy
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sailpappy
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Re: When Nothing Works...
« Reply #19 on: Dec 17th, 2002, 3:19pm » |
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Forgot to mention the Cocaine attempts, Dr. Taylor, My V.A. Doctor in Orlando placed a drop of medicinal cocaine on a cotton swab that was about a foot long, inserted it up inside my sinus cavity so far I thought he would touch My eye, the stuff deadened the area but actually made the cluster worse, we also tried the same approach with %20 xylocaine solution and it had the same affect, worse!
Then we tried injecting the xylocaine into the ganglia and 2 other nerves on my neck and the top of my head, same affect. worse headache with a numbskull, so I truely have been a numbskull! Pappy
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firebrix
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Re: When Nothing Works...
« Reply #20 on: Dec 17th, 2002, 5:33pm » |
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That's the first time I've heard you sad long story Pappy. WOW! You poor thing! You are one tough human.
33 YEARS of 7 -15 each day!! How do you do it? How did you do it without meds?? I'm gobsmakt here.
You give us strength.
I will not weaken!
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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