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Jim R
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Okay, I am going to take on a very controversial
« on: Sep 4th, 2002, 2:15pm » |
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issue - pain meds. I know most of you here swear up and down that pain meds have no place in the treatment of cluster headaches, but I am going to play devil's advocate here (with no small expereince myself in this stance)...
How about those of us who cannot take imitrex or one of the other other triptans or those for which the plethora of other drugs have not worked - would you wish the pain of a KIP 10 on them? Yes, maybe sometimes one gets a rebound, but maybe, sometimes one gets relief - I have on multiple occasions - and don't get me wrong here - I am not at all pushing narcotics or other pain relievers and I DO relaize the inherent dangers on addiction just as cancer patients must when they go into pain programs to try to get a quality of life out of their remaining time.
I know when I was in the ER the other night (and by the way, in my many times in the ER with KIP 9-10's, I have never been offered imitrex or any other triptan - there's an educational opportunity for us...), I would have taken ANYTHING to stop the pain and damn the risk of addiction and YES it DID stop the pain and I didn't have a rebound and NO, I didn't feel the need to have it again the next day. So, to summarize, I do believe there is a role, however large or small, for pain meds in CH and yes, there are RISKS just as there are in life but knowing these beforehand let's us make intelligent decisions about our choices. Okay - there it is - take aim and fire.
Jim R
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #1 on: Sep 4th, 2002, 2:19pm » |
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BTW - I am not addicted and only ever take pain meds if all other methods have failed. But IMHO, there is a place for them - to handle pain. Jim R
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NancyMcFree
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Re: Okay, I am going to take on a very controversi
« Reply #2 on: Sep 4th, 2002, 2:32pm » |
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Jim,`I think the opinion on pain meds is that they should be a last resort, not the first line of defense. Since there are other abortives like Imitrex and o2, I would recommend to anyone that has not tried them to try them before the pain killers.
That being said, I would consider taking ANYTHING to get rid of a KIP10 so what does that tell you? You gotta do what you gotta do ....... and just be knowledgable about the risks involved.
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Karla
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Re: Okay, I am going to take on a very controversi
« Reply #3 on: Sep 4th, 2002, 2:47pm » |
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I agree with Jim 100%. I have tried:
Preventatives tried
1. Lithium
2. Indocin
3. Verapamil
4. Thorizine
5. Depakote
6. Propranol
7. Amitriptyline
8. Lupron
9. Naproxen
10. Welburin
11. Topamax
12. Neurontin
13. Meclizine
14. Celexa
15. Effexor
16. Serzone
17. Nifedipine
18. Clonadine
Abortives that don't work
1. Oxygen
2. Migranal ns
3. Maxalt
4. Midrin
5. Ergotamine
6. Mortin or tylanol
7. Amerge
Abortives that are currently working
1. Axert (half hour to kick in)
2. Imitrix ns (6 min to kick in) I prefer this method!
3. Zomig (half hour to kick in)
Rescure meds that don't work!
1. Fiorinal
2. Fioricet
3. Butalbital
4. Tylanol-3
Rescue meds that will sometimes work if I rub the magic lamp the right way and recite the proper incantation.
1. Vicadin
2. Percacet
3. Stadol ns
I have tried everything and am tired of being hit 8x a day and being in pain 16 hours everyday while being chronic to boot. I am just looking to get a quality of life back and think you got to do what you got to do to get pain relief. But notice, I did try an awfull lot of things before hand. I have found morphine and dilaudid to kill my ha and usually will give me 2 or 3 days of pain free living afterward. I will continue to try preventatives as new ones come to mind or available on the market. But don't rule narcotics out completly, please.
Possible Solutions
1. Oxycontin 2. MS-Contin 3. Morphine
4. Methadone 5. Dilaudid
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Karla
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #4 on: Sep 4th, 2002, 2:52pm » |
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Nancy,
I couldn't agree more with you and if I didn't make that clear in my posts, let this clarify it. Always try to avoid pain meds, particularly narcotics because of the inherent risks (BTW - one should see what plain 'ole acetominophen can do to ya!). I mean, man, I'm already on so many preventatives which seem to change week to week, and then I always try O2 (doesn't always work for me), but at this point that's it for the abortives I have available. If the KIP level keeps rising, it's off to the ER, where the old hypodermic comes out (thank GOD at that point) and luckily I get some relief because if I didn't I would surely do myself in.
So, count your blessings if imitrex works and you can take it or if some other drug is working for you either as a preventative or as an abortive... Other CH sufferers may not be as fortunate and NONE of us want to be in pain, right? Jim R
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #5 on: Sep 4th, 2002, 3:06pm » |
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Wow, Karla - I thought I had tried a lot:
antihistamines (non-prescription)
verapamil
indomethicin
bellergal space tabs
lithium
topamax
clonodine
duradrin
ophenadrine
percocet
vicodin
norflex
stadol ns
excedrin migraine (non-prescription)
There are probably more...narcs usually taken with phenergan or compazine and again, only as last resort. Current regimen:
verapamil 240 mgs. x 2/day
Catapres 0.1 mg. x 2/day
O2
then on to pain meds.
When my blood pressure is under control, I will be able to try Amerge...
Jim R
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Drk^Angel
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Re: Okay, I am going to take on a very controversi
« Reply #6 on: Sep 4th, 2002, 3:06pm » |
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All I have to say is, when I have a real screamer, I'd do just about anything to make it stop. I haven't tried all the abortives out there yet, but the ones I have tried, only O2 has had any effect. Luckily, the verapamil is still working for me, so I haven't had too many attacks, and when I do have an attack it's not as bad as normal, so I haven't any need for the hard stuff right now. But I'd gladly take a Perc, if it would work to stop the pain (which it doesn't...) if the verap stops working, and my doc continues to have troubles finding an effective, portable abortive.
PFDAN............................. Drk^Angel
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echo
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Re: Okay, I am going to take on a very controversi
« Reply #7 on: Sep 4th, 2002, 3:17pm » |
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Well written JimR. I don't plan on taking any shots at you over what has been written.
As far as abortives and preventatives go I've taken a med timeout. Nothing specific or in combination seemed to work anymore. O2 was never overly effective for me either. At present when I get a head blaster I hit the Stydol NS (watered down to lessen the affect). May have the stoner shadows for a while but no rebounds. Yes -- I have been addicted to NS a few years in the past. Thankfully I have not craved it afterwards. Do I worry about being addicted again? Not really I can't get the endless supply I used to be able to get and you can't get addicted on a bottle a month.
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Slammy
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Re: Okay, I am going to take on a very controversi
« Reply #8 on: Sep 4th, 2002, 3:18pm » |
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The problem is that pain meds only mask the pain, they don't treat the headaches. But if none of the abortives worked for me, I'd take anything that reduced the pain that I was feeling. Fortunately, Cafergot works effectively as an abortive for me. I think the key is that pain meds should be a last resort in dealing with the pain. I'd try every abortive known before I would rely solely on pain meds like vicodin to deal with CHs.
Slammy 
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #9 on: Sep 4th, 2002, 3:29pm » |
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Slammy,
Sometimes masking of the pain is acceptable. Masking, dulling, obliteration, elimination - as long as it is less than it was, is usually okay by me and yup, I agree - last resort, but so far at least, I can't take the triptan abortives because of a strong family history of heart disease - because when those triptans are busy constricting those cerebral arteries, they're contricting one's coronary arteries as well (and all the other arteries in one's body) and therein lies the problem and the risk for me and my 47 year -old, non-exercised, smoker's body. I don't want to have a myocardial infarction trying to relieve my CH. And I tried most of the other non-triptan abortives, so I have few options left and they're dwindling pretty damn rapidly. Sometimes when I am forced to take a narc, it does work or it works suboptimally, but even some relief is just that and with a 10, it's appreciated for what it is. PFDAN's to you. - Jim R
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echo
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Re: Okay, I am going to take on a very controversi
« Reply #10 on: Sep 4th, 2002, 3:53pm » |
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Just to add that I only use Stydol NS when I can't friggen take the pain any more. I normally deal with whatever the 1st or 2nd one deliver, I know that within 30 to 45 minutes they will end. It's when I'm facing another 8 - 10 for the next 45 that I cave in and take a snort. I know I'm one of the few it works for -- 10 seconds and it's over. God I'm thankful for that!
Reefer anyone? That always did the trick back in the 70's.
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Re: Okay, I am going to take on a very controversi
« Reply #11 on: Sep 4th, 2002, 3:58pm » |
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My heart goes out to you and all the others out there that have not found any relief with the known abortives.
It recalls my days when I used elavil and vicodin to get through my cycles. I pray that you all find some abortive or preventive that will ease your pain.
Slammy
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oringkid
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Re: Okay, I am going to take on a very controversi
« Reply #12 on: Sep 4th, 2002, 4:37pm » |
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My only REAL problem with the narcotics is that they never worked for me. Didn't even mask the pain. Some made me sick as a dog and I still had the pain as well.
If nothing else works for you and you get some relief from the pain meds and it doesn't make you sick, by all means, use it, be careful, but use it.
I think the main thing most of us are trying to do when we warn newbies off the narcs is to make sure that they try the (for most people) more effective, non-addictive meds before they go straight to the narcotics.
Some docs routinely prescribe pain meds for any and all pain inappropriately and it is far to easy to go that route and never even try the other meds.
I think most of us understand that there are a few of us out there that have found no relief with anything else. But it should be a last resort.
Sherry
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echo
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Re: Okay, I am going to take on a very controversi
« Reply #13 on: Sep 4th, 2002, 4:54pm » |
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I agree Sherry. CH'ers first need to identify that which will prevent the occurance.
Docs are so eager to write scrips for pain control. When I hurt my back anb the doc wrote the script to eliminate the pain. It was hard to know when I was adding damage to my back when I couldn't feel the inital pain to begin with.
It's been a long day -- hope I make some sence. If not -- everyone can fill in the blanks and shoot me later.
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #14 on: Sep 4th, 2002, 4:58pm » |
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In a similar vein to this, I do not understand (or maybe I do - $?) why insurance companies limit the number of injections of imitrex, amerge. zomig pills or other triptans, but approve narcotics like they're candy and will pay for them forever in seemingly endless quantities...what IS the deal? As I said, never once have I EVER received anything other than narcotics in an ER or even offered it or had a discussion about it - wouldn't you think some knowledgeable doctor would know enough, care enough to broach this alternative treatment with me? I mean, where does an insurance company get off dictating you can only have your pain relieved X number of times per month unless you take narcotics then we'll let you relieve it XXXX times per month?! There is something wrong here...and it's not medical concern for subscriber's well-being Jim R
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Charlie
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Re: Okay, I am going to take on a very controversi
« Reply #15 on: Sep 4th, 2002, 5:05pm » |
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I'm with most of you. I'd have done just about anything to kill my pain. It's probably a good thing that stuff wasn't around.
The thing about every day pain killers and no doubt others is that it takes too long for them to work. I don't have much experience with more interesting stuff other than Demerol in the hospital. That was fun too.
Charlie
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2late
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Re: Okay, I am going to take on a very controversi
« Reply #16 on: Sep 4th, 2002, 5:08pm » |
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here's my take, i'll try anything out there to ease the pain, glad i found some things that help me, if not i'd be tryin' anything, legal or otherwise. i really feel for people who get no relief.damn kar, you've tried it all,poor kid  ...............2late
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catlind
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Re: Okay, I am going to take on a very controversi
« Reply #17 on: Sep 4th, 2002, 5:11pm » |
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I've tried a list nearly as long as Karla's and Jim's, and because of heart and bp issues, I can't take many of the meds that seem to work for most as a preventative or abortive. The O2 has been a god send, it will handle most kippers until I hit the 6 range. Then I'm in trouble. I'm on Celexa as a preventative and have actually had fairly decent success with it....I have to wonder if this cycle would have even hit if I hadn't stopped taking it.
So for me, and even the neuro went through everything that's been tried and that I can't take and said, Celexa, O2, and Tylox. For me the Tylox takes a long time to kick in, so most times it's not very helpful, vicodin has worked as well, and faster. If I get a 9+ I go to ER and get a shot of Nubane and steroids and O2 there as well. I usually leave with a 2 or 3. The pain meds/narcotics have never completely aborted the pain, but they have certainly made them more tolerable. Other things I do when in cycle, and to help prevent rebound is Aleve morning and night, and 95mg of Aspirin with the O2. Believe it or not, I've had better luck with plain ole bayer than the narcotics, but only if I catch it early. My problem is that waiting....asking myself ok is this gonna be a little kipper, or am I gonna hit 8+. I haven't found a way to know yet, other than speed of onset...if it takes 5-10 min. to affect me it's a kipper, and needs nothing other than O2, if I am at a 4-5 in 2 min. I can be pretty sure I'll keep going up fast. But of course, it hits too fast to get a pain med to stop me from getting to the 10.
For me unfortunately, my treatment regiment is O2, Celexa, and Tylox. That's my prescribed treatment. When hubby gets back from his deployment, I plan on going to walter reed headache clinic.
Cat
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Drk^Angel
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Re: Okay, I am going to take on a very controversi
« Reply #18 on: Sep 4th, 2002, 5:38pm » |
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Narcs never really helped me much. I've never had much luck with any pain relievers or pain killers. Vicodin was a complete waste of time for any pain (didn't even help with I sprained my hip a few years ago). 3 or 4 Percs will give me a good "Don't give a damn" buzz, but never touches the pain of the beast. I never take Tylenol, Motrin, Aleve (especially not Aleve... Was on naproxen before and I had about every non-lethal side effect), or just about any other OTC pain reliever. I've taken Darvocet, codiene, the shit mentioned above, and prolly a few other prescription pain-killers. They don't even help with my TTH or any normal bumps and bruises, and they definely don't help with the CH. For ppl that can't find anything else, and that these work for, I say use 'em, but they'll not be an option for me if I can't find an abortive. (Damn I talk too much)
PFDAN........................ Drk^Angel
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Bob P
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Re: Okay, I am going to take on a very controversi
« Reply #19 on: Sep 4th, 2002, 6:14pm » |
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"Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH." - Dr. Peter Goadsby
I'd have to agree with the doc. I've tried a couple of them over the years and they didn't do squat.
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jonny
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Re: Okay, I am going to take on a very controversi
« Reply #20 on: Sep 4th, 2002, 6:29pm » |
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Be cause of the way I look every Doc way back up to this day thinks im looking for pain meds. probably the first time in my life that the way I look worked for me. Instead of giving me pain meds they concentrated on findig the right prevenitive combo which we did.
Still sucks to walk in a new Doc's (no matter what for) office to see that look once again, makes me want strangle while screaming "I DONT DO DRUGS"
Sure, I could cut my hair and put a long sleeve shirt on but I wouldnt be me would I. and why the fuck should I have to?....Its not fair that you cant hurt people like that without going to jail 
...................jonny
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domm
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Re: Okay, I am going to take on a very controversi
« Reply #21 on: Sep 4th, 2002, 6:35pm » |
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Good subject and replies. My own thinking is people need to do what they have to do to relieve their pain. Each of us takes a risk every time we open our mouths to pop a pill or reach for a hypo. Life is full of risk, the question is how much do you want to take?
Banging your head on hard things is risky, yet we've all done just that. My dad ended up with bleeding on the brain after smacking his head on a car door. Needed surgery and weeks in the hospital to drain away the buildup.
Personally, I am going to use whatever weapon I can find. If the Verapamil, O2 and Imitrex quit working, I will find something else.
Jim and all - Hope you find relief
domm
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Linda_Howell
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Re: Okay, I am going to take on a very controversi
« Reply #22 on: Sep 4th, 2002, 6:38pm » |
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away from the subject a bit........
NO! you wouldn't be you Jonny. And NO, you shouldn't have to. Warrior
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Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #23 on: Sep 4th, 2002, 6:56pm » |
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Here's a good example -today, I have taken my prescribed 2 pills of 240 mg. verapamil and 2 pills of catapres and have a relatively mild CH now - maybe a 3 and it's been nagging me on and off for about an hour. I've tried ditching it three time with O2 with no sustained luck - it comes right back after about five minutes. Now what do I do at this pain level? What do I do if this CH decides to quickly escalate to an 8, 9, 10? Of course, I would try O2 again, but given it's lack of success tonight, it's doubtful if it will suddenly kick in. Up in my safe, I have my only other approved (have Amerge but cannot yet take that until neuro gives the"go" abortives - Stadol NS and Percocet. ... ??? I've had two days like this - I don't know if catapres takes time to build up in the blood, but...what else can I do when I know one of these two pain meds will probably help me to some degree? Jim R
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Re: Okay, I am going to take on a very controversi
« Reply #24 on: Sep 4th, 2002, 6:59pm » |
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on Sep 4th, 2002, 6:14pm, Bob P wrote:"Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH." - Dr. Peter Goadsby
I'd have to agree with the doc. I've tried a couple of them over the years and they didn't do squat. |
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I agree with you Bob, the don't do anything for the treatment of CH, but they can help with the management, if nothing more than to take the edge off so you don't go play chicken with a tractor trailer.
What Drk mentioned though, and few other things in this thread, have me wondering about something. One of the blood tests they did for me was to do with the pituitary gland and hypothalamus. There is something called a peptide that governs opiate receptors. Mine was 34 and normal is 144+. I'll have to find that page again, it was all in medical mumbo jumbo, you know the ones, beta this and alpha that, and requiring a medical dictionary for every other word. It makes me wonder if that's part of why barbituates and opiods do no good for even the general stuff....Hell I've been given 25mg Toradol, 100 mg demerol, 20 mg nubane all in one ER visit and not only did it not get rid of my headache, I walked out fully coherent....stoned, but coherent.
Cat
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