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Title: Pain Meds Post by thekidd37 on Dec 31st, 2007, 11:43pm I am a chronic sufferer. I have taken every pill that seems to be available. I know most of you are like me and can get your hands on pain meds when you need them. I personally hate it! But i did a test a couple months ago. I was given a moderate dosage of vicodine. 5mg-400mg. I would take a half pill in the am, half at at about 2pm and maybe a full at night. This seemed to keep the pain away. I did it for a month and being the chronic sufferer that i am, i noticed the best results here. My question is this. Is there any other Chronic suffers out there like me that are on pain meds and they work? I don't really want to take pain meds but i cant take 3-6 attacks a day anymore. The topamax helps, but only so much anymore. I just wonder if consistent pain meds offer relief. I know its not the cure. But then again there isn't one. :-/ |
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Title: Re: Pain Meds Post by painintheworld on Jan 1st, 2008, 9:57am I tried this for a couple of weeks one time , worked ok , damn rebound headaches sucked though. |
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Title: Re: Pain Meds Post by Bob_Johnson on Jan 1st, 2008, 11:50am The most current therapies: HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE. _________________________________________ http://www.plainboard.com/ch/chtherapy.pdf Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen) ================ Treatment guidelines from Europe ------ A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby: EFNS guidelines on the treatment of cluster headache and other trigeminalautonomic cephalalgias. European Journal of Neurology. 2006; 13: 1066–1077. Download free full text: http://www.efns.org/files/guideline_49.pdf (Thanks to "cluster" for link.) |
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Title: Re: Pain Meds Post by Kevin_M on Jan 1st, 2008, 2:37pm on 12/31/07 at 23:43:21, thekidd37 wrote:
Definitely not me. |
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Title: Re: Pain Meds Post by Melissa on Jan 1st, 2008, 3:07pm on 01/01/08 at 14:37:59, Kevin_M wrote:
ditto. of course, i've never liked taking ANY meds to begin with. I wish I didn't have to take vitamins either. :-/ |
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Title: Re: Pain Meds Post by Linda_Howell on Jan 1st, 2008, 3:25pm Quote:
What they offer is addiction. And rebound headaches. Have you tried Oxygen? |
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Title: Re: Pain Meds Post by rocketman3104 on Jan 1st, 2008, 10:19pm Pain meds don't touch mine. I had a tooth pulled and my dentist put me on Vicodin. The vicodin would knock me out, but guess who would wake me up out of it, just so he could stab the back of my eye. Yep my monster got real mad when I took the narcotic, like M.C. Hammer said "Can't Touch This" O2 Rocks, if you haven't tried it give a shot. Works for alot of us. |
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Title: Re: Pain Meds Post by chewy on Jan 1st, 2008, 11:47pm Quote:
They sure will. They'll relieve you of a lot of things. Finances, jobs, family, etc etc. |
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Title: Re: Pain Meds Post by George_J on Jan 2nd, 2008, 12:49am I'm an episodic. For what it's worth, I was given a variety of pain medications for CH early on. Never became addicted, but none of them was effective. Some of them, (notably codeine, percocet, and darvocet) seemed to make them worse. Speaking only from my own experience, it's not something I'll bother with again. Best, George |
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Title: Re: Pain Meds Post by Sean_C on Jan 2nd, 2008, 12:59am on 01/02/08 at 00:49:46, George_J wrote:
Thats because you have CH. We need vaso constrictors, not opiates. |
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Title: Re: Pain Meds Post by Guiseppi on Jan 2nd, 2008, 10:32am In the early stages of diagnosis I went through the usualy range of pain killers. Vicodain, codeine, fiorinal, percocet, I used to think they helped because after about 90 minutes the meds would "kick in" and I'd fall asleep. It wasn't until I started keeping detailed diaries I realized that's all the longer the headache lasted untreated. The mechanism of CH is such that it's really not responsive to "pain killers." Most on the board are far more suucessful using the 2 pronged approach of a good preventative strategy, something you take daily to reduce frequency and intensity of your attacks, these include lithium, verapamil and topomax, then a good abortive strategy, somrething to stop the attack...not the pain,,, the actual mechanism of the attack. The most popular...that is most consistently effective aborts, are oxygen, and imitrex. There are many more to read about. Both in the short run, and the long run, you will experience far less pain using this routine then the narcotic run. Good luck to you my friend! Guiseppi |
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Title: Re: Pain Meds Post by thomas on Jan 2nd, 2008, 10:39am Haven't ever had pain meds that would touch a ch. Not a therapy that I would recommend, but hey what do I know, I'm not a doctor. |
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Title: Re: Pain Meds Post by lashultz on Jan 2nd, 2008, 11:25am For me, anyway, pain Medicines like vicodin did nothing. I tried it a few times and it did not even touch the headaches. Lee |
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Title: Re: Pain Meds Post by Chappy on Jan 2nd, 2008, 9:26pm From what I've read, I think I have a longer experience with narcotics than most chers, because I wasn't diagnosed at the time, and worked with a pain doc who was open to using them long term for chronic pain. First, everyone is right, at least with vicodin the dosages never work for long, and don't help with much more than shadows. I used them for 18 months. I never had any problems with addiction, and stats show people with chonic pain have low single-digit tendencies toward that. However, I'll say emphatically that if I had a time machine I'd go back and tell myself not to start. They never helped at night when the worst pain was (my "attacks"), and by the end I was on 3 morphine sulphate extended release daily plus 4-6 vicodin or percoset for breakthrough pain (read: rebound headaches). Through all of that time I became more and more fatigued, was sleeping 12-15 hours many days, and found my testosterone took a nosedive. A pharmacist suggested they could be the cause of the fatigue, so I went off them, was diagnosed with chronic CH, and the proper doses of topomax and verapamil with O2 as an abortive has me much more pain free than 120 vicodin/month and 120 morphine ever did, and I can play with my kids again. I've been chronic for over two years, and before I found preventives that worked my attacks came 5-6 times during the day, plus 2-3 3 hr kip 7-9s every night. Now I have only shadows during the day, which O2 handles, and one attack at night that triptans or O2 work for. |
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Title: Re: Pain Meds Post by brewcrew on Jan 2nd, 2008, 9:34pm on 01/02/08 at 21:26:49, Chappy wrote:
Do you see the inherent contradiction in these two statements? |
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Title: Re: Pain Meds Post by Linda_Howell on Jan 2nd, 2008, 11:40pm If he doesn't...I do. ::) Quote:
[smiley=pokeeye.gif] Quote:
Holy crap...I cannot even find a smiley to describe what I'm thinking right now...(Charlie help!!!!!) Chappy...? Pm me, I need to straighten your butt out big time fella. O.k. I'll be nice and polite...a little. ;) Seriously..PM me. Linda |
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Title: Re: Pain Meds Post by StressFree on Jan 8th, 2008, 4:54pm I've been through the whole gammut of pain meds before getting a correct diagnosis and better treatment. My experience was that tollerance to the opiod type drugs would make them rapidly ineffective. I do think that mild antianxiety agents (Meprobamate/Equanil) are usefull if taken at first signs of a cycle. Oxygen didn't work for me due to multiple daily hits, but I haven't tried the new masks that are now in use. The last 2 cycles I've had, Verapamil with a Prednisone taper got things under decent control, but still had some very high KIP level breakthough attacks. Alternating everyother day between a strong pain killer (Stadol nasal spray) and a triptan drug (Maxalt) worked well for me last cycle for break through attacks. Trying not to get wacked on strong pain meds is a tricky thing, and then they end up not working for you. I started out chronic and finally broke into episodic with verapamil and cafergot. Now getting more than several years between each cycle. Wishing the best for everyong out there, especially you chronics! Rich |
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Title: Re: Pain Meds Post by jace77 on Jan 15th, 2008, 4:11pm Hubby was chronic or so we thought for 7 years, tried all the pain meds too, at first they helped if he took them an hour before falling asleep, nothing now. We saw a Dr in Cincinnatti and I think he walks on water! Long story short, he stopped what we thought was chronic in ONE visit. THey returned 18 months later, another single visit and gone for 13 months. The beast is back and we are heading back to Cincy the 23rd, lets hope 3 times is a charm! |
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Title: Re: Pain Meds Post by Kevin_M on Jan 15th, 2008, 8:09pm on 01/15/08 at 16:11:22, jace77 wrote:
You haven't mentioned what he does in one visit. |
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Title: Re: Pain Meds Post by Kevin_M on Jan 15th, 2008, 8:26pm on 01/08/08 at 16:54:27, StressFree wrote:
That's what oxygen is for, handling hits daily or nightly when they come, without medication. A non-rebreather mask and 15Lpm will make a difference. |
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Title: Re: Pain Meds Post by Redd on Jan 15th, 2008, 8:48pm on 01/15/08 at 20:09:34, Kevin_M wrote:
Call me a sceptic, but I smell something reptillian mixed with petrolium with 6 posts. But I could be wrong... |
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Title: Re: Pain Meds Post by jace77 on Jan 15th, 2008, 10:29pm The first time we went to Cincy, all he did was increase the verapamil by 240 mg day, was at 240 X 2 day and went to 3 per day. You would think someone would have done that long before. The second time we went he did some sort of nerve block at the base of the skull, insurance didn't cover it as they said it was experimental, don't remember the exact cost but it was under 200.00 and well worth it. Just an FYI, though we show as newbies, we have been a member since 1999, and was one of the first to register in the WHere we live when it first started. I simply forgot the log in and finally decided to re-register today. |
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Title: Re: Pain Meds Post by Kevin_M on Jan 16th, 2008, 4:56am on 01/15/08 at 22:29:54, jace77 wrote:
It's quite common for me to have the doc change the verap dosage in steps as needed. It does help. |
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Title: Re: Pain Meds Post by midwestbeth on Jan 16th, 2008, 11:16am Tylenol, Excedrin, Naproxen, then went to trying codeine and vicodin...............nothing ever touched the pain. I was taking pain meds daily and this was before I was diagnosed with ch. Gave up all pain meds about a month before being diagnosed. I thought I was immune to pain meds since they never brought me any relief......................well, actually I thought I had a brain tumor. Beth |
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Title: Re: Pain Meds Post by StressFree on Jan 17th, 2008, 6:13pm Quote:
Kevin_M, I did have some success with oxygen years ago. It would stop an attack within 10 to 15 minutes, but the same high KIP level attack would always return within a half hour. I had the same issue with Imitrex. It became almost a 24 hour/7 day a week cluster event. I went from one attack each day like clockwork, to so many attacks day and night that I couldn't count them. The shadows inbetween were extremely intense as well. You know the residual temple burning type thing? This had never happened before using the 02 and Imitrex as abortives. One thing I've used along with meds is a TENS nerve stimulator to try to calm things down. This didn't seem to give as strong of an abort, but I think it gave more lasting results. Also Maxalt worked better for me than Imitrex. It's odd that it's so different for each of us, and even from one cycle to the next. I will likely try the non-rebreather next time anyway. Prayers going out for you all. Rich |
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Title: Re: Pain Meds Post by Kevin_M on Jan 17th, 2008, 7:01pm Rich, After the first couple cycles for me, just being able to abort these things came as a confident relief. However, continuing complacent that way for too long led to feeling like a slave to it every two hours in the following years, prevention became the utmost concern when I was willing to fight back again. You mention a lot of abortives, important, but searching for a preventive med is a continuing step that may take time to get effectively right for you. Keep battling it in a way to keep it down longer. ;) Preventive meds can sometimes help slow an accelerating hit, so a second look at oxygen can get to it more often. I know now I don't waken with it beyond catching too often, there are bad times. A hesitation in aborting will get me to a kip 7 easily but slower beyond that while the oxygen is working on it. Previously it was always much worse, sore head and all between hits. Still, oxygen is not always effective in ridding it but can keep it down while very much less reliance now on a nasal spray Imitrex for me has its chance to work when it's stubborn and relentless. Used far less, it can seem more lasting sometimes. Keep fighting, Rich. :) |
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Title: Re: Pain Meds Post by Stinger on Jan 22nd, 2008, 12:58pm I was pretty heavy into stadol for a couple of cycles and I must say, I never had a desire to take after 3-4 months when I didn't have a headache. Stadol is pretty heavy duty stuff. |
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Title: Re: Pain Meds Post by StressFree on Jan 22nd, 2008, 4:50pm Stinger, Heavy duty - yes. But I did find it ineffective when used daily. Nothing worse than a KIP10 lasting for a couple of hours after already taking the strongest stuff in your arsenal! I've had the same problem with ergotamin (cafergot, etc) so it's not just a pain med issue. Alternating between the Stadol and Maxalt everyother day seemed to work well for me last time. Stadol is nasty stuff though. I can see why they feel there isn't a high risk of addiction. As strong or stronger than morphine, but with unpleasant side effects (odd dream like state and crappy feeling vs. euphoria). |
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Title: Re: Pain Meds Post by Stinger on Jan 22nd, 2008, 7:08pm Yeah, I found myself taking it for each headache and still getting another headache an hour or two later. I did slow down and use it only during the toughest of times. |
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Title: Re: Pain Meds Post by Crappy on Feb 20th, 2008, 2:38am This is a bit late, but for some reason I never received emails of replies to my earlier posts here about opiate pain killer use. Brew and Linda had responded to my 18 month stint of being prescribed opiates, which I suspect made things worse in the end. I had said I hadn't had problems with addiction, which is true, simply because the drugs I was given never provided any sort of "high" or need for increasing use. I took what I was given, and never felt any temptation or need to overuse them. My pain doctor said that chronic pain sufferers have a low single-digit risk of abuse compared to acute or short-term pain users. He also wouldn't prescribe "breakthrough" drugs like Vicodin or Percocet by themselves, because of the risk of addiciton and rebound pain, unless I was already taking extended release pain morphine sulphates, which release slowly and steadily throughout the day. This supposedly reduces the risk of addictive behavior. I definitely had physical dependance, because when I called him and said I wanted to stop taking them, I had to deal with a month of withdrawals, but it was just like having a flu. I still have the last unused bottle of morphine and percoset in my medicine cabinet, and never had any "cravings" for them. What I found was that the drugs provided relief of simple shadows early on during the morning and early afternoon early on, but never during the late afternoon and not at all during the evenings and night, and didn't help at all with my "sleep problems." My end problem was misdiagnosis, and anyone who hasn't been properly diagnosed won't be properly treated. My "headaches" never went away. Once you're properly diagnosed with CH, opiates, whatever the form, are the wrong mediation, period. Opiates won't help, but they may cause increasing fatigue. After diagnosis, the proper dosage of Topomas kicked the "fatigue" considerably. I'm still waiting for my magic cocktail to get rid of the attacks, and unfortunately the Topomax seems to have stopped working. O2 high-flow also seems to only delay my attacks, so for now I'm a chronic with no magic bullets. |
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Title: Re: Pain Meds Post by Emily on Feb 20th, 2008, 10:24am I'm glad you pointed out that painkillers won't help. Now that I have a proper diagnosis and relief routine going, I realise that the painkillers were making things SSSOOOO much worse in those early months. I now don't take any aspirin, paracetamol or any medication with alcohol in it because the slightest thing just sets me right back (even cough medicine! Be careful and read the ingredients!). Have you thought about melatonin? I use that along with o2 and energy drinks and I am doing ok (for now). Just some extra things for you to think about! Em |
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Title: Re: Pain Meds Post by Linda_Howell on Feb 20th, 2008, 9:45pm Quote:
I am happy that you posted this. I wish only for the best of outcomes for you. Linda |
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Title: Re: Pain Meds Post by Ace_Sterling on Feb 21st, 2008, 6:41am If it were me, I would stay away from the opiates as much as possible. Regardless of addiction, they can make your CH worse, produce horrifice rebound headaches, and actually cause some permanent damage to CH Sufferes. I take Tramadol (Ultram) for the pain and prohylactically. I also take Adivan and Excedrin Migraine prophylactically. I will do a short (5 day max) prednisone taper if need be. With this regimen, I am almost CH free (maybe 2 times a year) FYI. |
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Title: Re: Pain Meds Post by Charlotte on Feb 21st, 2008, 9:25am The thing that has made the difference in my quality of life has been this message board. My first advice received was "Get a new doc", "He works for you", "Fire the doc", and I did. The support I have received here has meant more than any meds. The way you guys are here for me and they way you share life's adventures makes me rich. I've been here 2 years now, chronic whatevers. Regarding meds, I take 80 mg Verapamil 4 times a day for my ch, 50 mg Indomethacin 2 times a day for my ph, and right now finished my 2nd pred taper and am taking 10 mg every other day for the occipital headaches, for which I also use a low dose of vicodin - about 1/2 pill 3 times between 4:00 a.m. and noon, to take the edge off and help me get through work - on bad days, and none on good days. (no, the vicodin does not help w/ch but it does for my occipital headaches.) Anyone who has chatted with me in the evening knows, I get those odd occipital headaches which last about 10 minutes and hit on one side, overlapping hit on the other side, back and forth, sometimes only once each side but sometimes for hours. (They resemble a very mild ch but start in the back, go around the side, and hit the inside of the front and down the eyeball, and are more distracting than painful.) This is what I use the low dose of pain meds for, but only in the a.m. to get though the beginning of getting ready for work, and getting my start of the day done. My supervisor is so great. For example, yesterday I emailed her that I had taken all my meds but was having a really bad day, and would know by 9:30 a.m. if I was going to be functional or needed to leave. She responded back, no problem, and the meds did cover me and I made it. But I had the "Out". It could have gone either way. During the evening, many times Jen/Polly Pockets coaches me through my 10 minute hits much like a labor coach coaches a woman in labor. Thank you so much, Jen. KJ, Tony, and Kirk help me so much, too. And Charlotte/Cash/Mamaswimchica has walked me through the pred tapers and nerve block step by step and made such a difference. I love the rest of you in chat, too, Ray, Davy, etc. - you are the icing on my cupcake. Pain pills can help with other headaches, other pain, but nothing helps like moral support and a good doc. Charlotte |
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