Support and Chronic Pain Community Group
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Hello my friends,
I am not doing very well. As most of you know I'm having difficulty with workers comp approving my SCS trial. I am in a awful amount of daily pain.
I moved my PM doc appointment up to next week, unless that gets cancelled too. I am having terrible daily headaches, which is one of the main reason I've not been around as much. The other was anger, and I'm getting a little further along each day with that.
I have to talk to my doctor about my meds. The total hydrocodone prescribed to me daily has 3,000mg total of acetaminophen, for nerve pain. Along with other muscle relaxers for bad neck and shoulder spasms, I'm a walking basket case. I frankly hurt all over, mainly my neck, head, eyes, ears, shoulders, biceps, elbows, forearms, fingers, and knees.
My doctor has talked to me in the past about time release meds, but I don't know much about them. I am not asking that anyone publish on this board what they are prescribed, but I need some feedback on the types that are out there that work, and what meds are used for, what my doctor called, breakthrough meds. I do know that there is a 12 hour time release med, but does it last that long.
If you would rather private message me, that's fine, but I need help.
David.
I am not doing very well. As most of you know I'm having difficulty with workers comp approving my SCS trial. I am in a awful amount of daily pain.
I moved my PM doc appointment up to next week, unless that gets cancelled too. I am having terrible daily headaches, which is one of the main reason I've not been around as much. The other was anger, and I'm getting a little further along each day with that.
I have to talk to my doctor about my meds. The total hydrocodone prescribed to me daily has 3,000mg total of acetaminophen, for nerve pain. Along with other muscle relaxers for bad neck and shoulder spasms, I'm a walking basket case. I frankly hurt all over, mainly my neck, head, eyes, ears, shoulders, biceps, elbows, forearms, fingers, and knees.
My doctor has talked to me in the past about time release meds, but I don't know much about them. I am not asking that anyone publish on this board what they are prescribed, but I need some feedback on the types that are out there that work, and what meds are used for, what my doctor called, breakthrough meds. I do know that there is a 12 hour time release med, but does it last that long.
If you would rather private message me, that's fine, but I need help.
David.
What I take is a huge jump from the Vicodin you are currently prescribed. However in your situation and current pain level you need something several rungs from where you are...not to mention all the acetaminophen is really not good for you.
I hope this helps.....hugs!
Deb
All in all, I still have flares and lately the back spasms have been pretty bad. After 16 months of this I am pretty much done with conservative since I don't want to live in a drug haze. Have you tried the ESIs at all? Sometimes they do help and are worth a shot if you haven't tried them at all. Have you tried hot baths with epsom salts? I don't have a tub in my apartment and since I would need help getting in and out I would hate to ask my daughter LOL.
I forget if you mentioned whether you have a lawyer to deal with w/c. If so maybe it is time to tell the lawyer to get on w/c case for the SCS trial. I know that dealing with w/c adds a lot of stress that shows up as additional pain.
Big hugs my friend. If you have any questions, feel free to ask.
Barbara
In my exsperience the best med that worked for my pain (including nerve pain) was methadone. I was on a very low dose 20 mg per day. I could take it every six hrs (so 5 mg at a time) but it usually lasted 8-10 hrs. The only pain of mine it didn't help were my migraines and i had mobic and vicoded for breakthru.
I've also been on MS cottin, and it dosn't work nearly as well or on as many types of pain but it makes some of my days bearable. I still have mobic and vicoden for breakthru. i can take it every 12 hrs but it only lasts 8. The half life isn't that long on this med so if i miss a dose i go into withdrawl. NO FUN!
they both work but i wanted to tell you my expserience. My theory is if you have to take your break thru med ( ibuphropen, naproxen, vicoden, percoset ect) every day its time to go on a time released med.
Let us know how your appointment goes.
big hugs
I could tell you were hurting worse and more intently and first want to say my heart breaks to hear this. All the eye ear and upper body pain you describe is something I also have. Meds aren't helping me much right now so I really don't have anything to add. But in the past neutontin helped some. Klonopin helped me but I got pretty out of it so to speak. But it served its purpose...my head and neck were exploding and it relieved that a bit. I am not on it now but will again if that comes back in that intensity. Moving at a slower pace helps, but I know that may not be possible. Love, Pauli
I am also on Vicodin 5/325 (5 milligrams medication 325 milligrams Tylenol) I take that x 4 per day and I also take 2-4 Baclofen per day for muscle spasms and Gabapentin 1800 mg per day. I really, really found the methadone to be a good pain reliever...until I was not able to take it anymore. I would prefer dilauded. I would prefer anything long acting that did not have aspirin or tylenol in it.
I am so sorry that you are having such a hard time and I wanted to tell you how proud I am of you that you actually posted about yourself and asked for help...I think you don't do that enough my friend!
I hope that you are able to find something that works better for you...Vicodin/Hydrocodone are like PEZ in the medication world...
HUGS to you my friend.
There are some "old school" medications that help specifically with nerve pain, which appear to be always overlooked these days... since the advent of Gabapentin and Lyrica it seems doctors have forgotten all about what used to give some relief before those newer meds became available. I am unable to take either of those two, simply because they are not on the govt subsidised list in my country, which makes them absolutely unaffordable for me. However on several occasions my pain clinic has given me free samples to take short term, in the hope they would work to settle pain flare-ups when I'd been dealing with that for many months without finding any relief. Lyrica worked once for that, but not the second time... and Gabapentin didn't at all... so I'm not sure that they would help my nerve pain even if I was able to take them ongoing. I have dealt with my nerve pain for 10 years now, so I would like to pass along what I have learnt gives me relief. As medication brand names may be different here, I will give the medication name as well as the brand name.
I take Oxycontin as a controlled release med, which does help lower my pain level provided I take them absolutely by the clock every 12 hours. With my morning dose my usual wake up time is 9am... but I take my morning meds and a bottle of water to bed with me and set the alarm for 7am. When the alarm goes off at 7am I take my meds, then roll over and go back to sleep for another 2 hours. That ensures that I never wake up at 9am in pain because my meds are already working in my system. Also my pain is always at it's worst in the afternoon, as it increases with my activity as the day goes on... so my pain docs have me taking another dose of Oxycontin at the half way mark ie @ 1pm.
I also take Tramahexal SR (tramadol hydrochloride) because my pain specialists believe in having several different pain med "actions" happening at once, rather than just taking one med at a higher dose.
I use Doloxene (dextropropoxyphene napsylate 100mg) as my breakthrough med, which I find works very well and kicks in quickly... provided I take it as soon as my pain level begins to rise, rather than waiting until I am in severe pain. (Which is always the best way to deal with any breakthrough pain or flare-ups... waiting till your pain is severe before taking extra meds only results in you always "chasing the pain" rather than controlling the pain.)
The other meds that I take specifically for nerve pain are:
an "old school" tricyclic anti-depressant (not an SSRI anti-depressant). I use Allegron (nortriptylene) but there are others that also work for nerve pain (eg amitriptylene sp?).
an anti-convulsant. I used Tegretol SR (carbamazepine) for many years with success, but was switched to Valpro (sodium valproate) a few years ago and have found that to work better than Tegretol. According to my pain specialists it is preferable to Tegretol because it has a broader effective dosage range.
I was also for many years using Mexitil (mexiletine hydrochloride) which also helped my nerve pain. Unfortunately it is no longer available in my country so I had to stop taking it. (the drug company stopped importing it because there are better drugs available for it's main use as a heart rhythm stabiliser.)
Sorry for the length of this post... but it really bothers me that these drugs seem to be overlooked these days, when I know people could be getting some relief for their nerve pain by using them... and I also know a lot of people can't use Lyrica or Gabapentin because the side effects are too much for them to cope with. Also none of these other meds are opiods (including Doloxene)... so nerve pain sufferers could be using them to get some relief if they have opiophobe doctors who won't prescribe decent pain meds for them. They are all worth discussing with your pain specialist... or perhaps trialling to see if they will work for you.
The reason I know they are all effective to some extent, even though I am taking many different meds at once, is because I go through so many periods of "flare-up" which can last for months and months (the longest so far being 12 months). When I am in flare-up all the doses are gradually increased until the flare-up settles... but then I have to decrease the doses again in order to have somewhere to go "up" to again when the next flare-up happens. I have a very good idea from the "upping and downing" of the doses that the different meds are all working, even though I take them in combination.
Sending hugs and smiles for you David... and positive thoughts that the scs will be of benefit to you.
Take care... xxx
I have not been on time (sustained is what they call it here) release pain meds but I have had them for other conditions and they worked very well for me. Personally I would give it a try but make sure that you do have some break-through meds for those really bad times.
Just my thoughts on this. Hope that you can find some relief soon.
My body is full of nerve pain. I also get headaches. I take Topiramate (Topamax). It is a headache med, nerve disorder med. I personally don't have any side effects with this med, but some people can. Without this med my body major spasms out and I am unable to use my limbs very little. It is not a pain med, but a reducer or nerve impulses. I think it is worth discussing with your doctor.
I would also like to suggest that you find something that helps you relax. You have neck pain, stress and headaches. That's a bad combo and will just accelerate those headaches. Go fishing or hiking or something. Whatever it is you do, make it a point that you leave work and w/c behind during that time period.
Many Blessings,
Toni
I have been taking ER medications ever since I started seeing a PM Doctor, and as far as I am concern, they are the best! I was on Avinza, on MSContin, Fentanyl patches and right now I am on Methadone, which to me it has been the best of them all. I hope that your Doctor gets you one a good ER medication, and I hope that it works. So now; what is the next step to be able to convince WC that you need an SCS? Do you know???
I have no problem telling you what I take and what works, and if you want to ask me in private, send me a PM.