Pain Management in Pgh - SO Frustrated! - Page 3

David Berg · 05-17-2012, 10:27 AM

Quote:

Originally Posted by Nickib

The Neurontin was 300 mg three times a day

hlh is right on, 900 mg/day of neurontin is nowhere near enough to help with neuro pain. If the doc thought it was, then I have to question his experience treating this sort of pain. Seriously.

darkeyed_daisy · 05-17-2012, 10:43 AM

Quote:

Originally Posted by Nickib

The Neurontin was 300 mg three times a day; Pamelor I'm not sure but it was 2 pills at night, not sure of Zanaflex or Skelaxin dosages, but the next thing we are going to try is Lyrica 75 mg starting at 1 at night and if I'm reading the script right it can go up to 1 every 8 hours. The second script for Lyrica is 150 mg starting at 1 at night up to 1 every 8 hours. The third script is for Baclofen 10 mg one every 8 hours. I just saw a commercial that Cymbalta can help with chronic pain. Would this be an option? I read on here about Lithium. Stabbing in the dark here. What type of pain does this sound like to you, and based on that what should we try? Thanks again for all of your responses in the past and future.

A Cymbalta 60mg and Ultram ER 200MG combination worked for me for several years but it has been a good combination for some here. There are some on it here as we speak. However, there are some here who have had really bad horrible experiences. As with any drug you have good and bad. I had to go off the Cymbalta in December because it just was no working any longer. I think I had been on it since 2002ish. Ultram/Tramadol is a good drug if he can tolerate it. It is being discussed in another thread here in the Pain forum too. I know he and you worry about the stigma of narcotics/addiction but it becomes a quality of life issue.

I believe you are in my predicament. You want a fast fix for which there is none. These drugs have to be increased slowly like the other posters said or it messes with the head and internal organs. It takes time to find relief and some never find it.

faceplant · 05-17-2012, 11:50 AM

I agree with what others have said here. try to stay with the medication a little longer as sometimes they take a while to feel the full effects of the medication. I have found it really helpful to keep a pain diary to keep track of symptoms and how the medications and side effects that are experienced. This was really helpful when I recently had an appointment with my primary MD to show him how things were going. I am now on Oxycontin and it is helping....the pain is not gone but it is much better than it was before. Plus the Topamax, and they added in Lexapro. I hope they can find the right mix for you too!

Nickib · 05-18-2012, 10:14 AM

I am so glad to have found this forum. I am hoping that my guy (Danny) will join and learn from all of you as I am in the process of doing. Yes, you are right that we are looking for the next medication too fast. This isn't my forte, so to speak, I would have "thought" (silly me) that the doctor - pain management doctor, no less, would know this. Since I last posted we took the 75 mg Lyrica to the pharmacy to be filled (yesterday). They called late in the day to say they couldn't read the script so they called the doctor's office. His nurse couldn't read it! Seriously? So (sigh) as of this minute, they haven't had a return call from the doctor, so the script sits, unfilled. I have shared all of the information you have provided with Danny and as a result, since he already has a plethora of half-full medication bottles, he, on his own, started with 300 mg of the Neurontin this morning and will go back on 3 of those a day, then increase it to 2 of them 3 times a day. I am nervous about this on our own but I am hoping it will be okay. From what I have read here and elsewhere, there isn't a danger in titrating that way.

Just as a side note, and I'm not surprised at this because I have been concerned about the liquid minerals, specifically the magnesium, he has begun having bowel accidents again. Ugh! We were doing SO WELL since last September. Once he started on the Benefiber chewable once every other day accidents were once a month, at the most. This week he has had four, progressively worse each time. What do you all think? Magnesium? Potassium, Zinc, Krill Oil? Any or all of those a factor? I know that magnesium didn't agree with me when I was taking it as part of a multi-vitamin regimen. I'm so disheartened for him and he feels so bad that he didn't even want to tell me about this last one yesterday. We are taking the leap and moving in together in two weeks. I have quit my job, got another one and am moving an hour away from where I have lived for 18 years. I love him and am committed to him, for better or worse, and I just want to help make things better! I even had a final appointment with my PCP yesterday and talked about the pain factor and what his opinion was. He suggested a physiatrist, but I think that's where we are with his SCI specialist in Pgh. Again, thank you for any suggestions. God Bless all of you for being here!

arndog · 05-18-2012, 01:50 PM

You're just not going to get better advice anywhere than what HLH just gave. Thanks HLH.

Nickib · 05-18-2012, 01:55 PM

Quote:

Originally Posted by arndog

You're just not going to get better advice anywhere than what HLH just gave. Thanks HLH.

A-m-e-n!

Nickib · 05-18-2012, 02:15 PM

Arndog - just reread lots of the posts from this thread and realized I didn't answer your question - sorry about that. Danny is a T-9/T-10 incomplete is what he told me. I apologize for my ignorance, I'm not real clear on complete versus incomplete. Logically (to me, anyway) a severed cord would definitely be complete and his is not severed. He fell off of a roof and, among other things punctured one lung and the other lung collapsed. They had to rush him to surgery to save his life before they could address his spinal cord injury. From T9-10 down was deprived of blood for 30 hours, which, again as I have been told, resulted in his paralysis. He is under the impression that had that not been the case he would have walked out of the hospital (sigh). He has a heating and A/C business and was coming down off of a roof when the ladder slipped, or he mis-stepped, not sure which. Just one of the reasons I have such admiration and love for this man is that no matter what, having constant pain, he gets up every single day and goes to work and just doesn't give up living and enjoying life to the best of his ability. I hope this information sheds more light on the overall situation.

thehipcrip · 05-18-2012, 06:41 PM

Nicki, magnesium is a laxative, so it's likely the reason Danny's been having so many bowel accidents. Stop using it and the frequent accidents should be a thing of the past.

hlh is brilliant.

avictoria · 05-18-2012, 11:14 PM

Hi Nicki- a few off the wall ideas. A rock-hard painful muscle that relaxes as the pain subsides? Maybe see a good physical therapist....could he simply have chronically inflamed back/ stomach muscles? Maybe ask the docs to consider corticosteroid injections? Valium plus an NSAID like motrin? Opiates should help the pain from an acutely strained/inflamed muscle or tendon, then maybe it could be managed with massage therapy and muscle relaxants and NSAIDS as needed. Just some ideas. If you can physically feel the area is hard and tense maybe it's something musculo-skeletal. Has the doc palpated that area when it's rockhard and painful? Hope you find a solution. Keep looking into other options. Valium and opiates when taken responsibly and safely, either short-term or long-term, can be extraordinarily helpful.
Avoid vicodin and the other drugs mixed with tylenol (acetominophen); tylenol is really tough on the liver.

Nickib · 05-23-2012, 06:26 PM

UPDATE - Danny started on 2 Neurontin three times a day last Friday and oh my gosh what a difference! The weekend was great! A couple of times he was anticipating an intense spasm and as quickly as he thought it was coming on, it just stopped. I was so happy for him! He also STOPPED the magnesium all together and viola! - no more accidents! Unfortunately, he has had more pain in the last two days than he did all weekend and mentioned going up to 3 of the 300 mg Neurontin three times a day on his own. This scares me a little though because it's awfully fast and not - IMHO - titrating slowly enough. But then, I'm not the one in excruciating pain. As always, I welcome any thoughts on this next step without consulting a physician. Has anyone done this on their own? Safely? I am hopeful that once we are together each day that we will carve out time for him to use his stander on a regular basis and I am going to begin some leg exercises and some muscle massage as I truly believe those few simple things, done regularly, cannot help but make a positive difference.

05-17-2012, 11:50 AM	#23
faceplant Senior Member Join Date: Oct 2011 Location: MN Posts: 110	I agree with what others have said here. try to stay with the medication a little longer as sometimes they take a while to feel the full effects of the medication. I have found it really helpful to keep a pain diary to keep track of symptoms and how the medications and side effects that are experienced. This was really helpful when I recently had an appointment with my primary MD to show him how things were going. I am now on Oxycontin and it is helping....the pain is not gone but it is much better than it was before. Plus the Topamax, and they added in Lexapro. I hope they can find the right mix for you too! __________________ ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

05-18-2012, 06:41 PM	#28
thehipcrip Senior Member Join Date: Jan 2009 Location: US Virgin Islands Posts: 2,665	Nicki, magnesium is a laxative, so it's likely the reason Danny's been having so many bowel accidents. Stop using it and the frequent accidents should be a thing of the past. hlh is brilliant. __________________ It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. ~Julius Caesar

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05-18-2012, 10:14 AM	#24
Nickib Senior Member Join Date: Jul 2010 Location: Pennsylvania Posts: 104	I am so glad to have found this forum. I am hoping that my guy (Danny) will join and learn from all of you as I am in the process of doing. Yes, you are right that we are looking for the next medication too fast. This isn't my forte, so to speak, I would have "thought" (silly me) that the doctor - pain management doctor, no less, would know this. Since I last posted we took the 75 mg Lyrica to the pharmacy to be filled (yesterday). They called late in the day to say they couldn't read the script so they called the doctor's office. His nurse couldn't read it! Seriously? So (sigh) as of this minute, they haven't had a return call from the doctor, so the script sits, unfilled. I have shared all of the information you have provided with Danny and as a result, since he already has a plethora of half-full medication bottles, he, on his own, started with 300 mg of the Neurontin this morning and will go back on 3 of those a day, then increase it to 2 of them 3 times a day. I am nervous about this on our own but I am hoping it will be okay. From what I have read here and elsewhere, there isn't a danger in titrating that way. Just as a side note, and I'm not surprised at this because I have been concerned about the liquid minerals, specifically the magnesium, he has begun having bowel accidents again. Ugh! We were doing SO WELL since last September. Once he started on the Benefiber chewable once every other day accidents were once a month, at the most. This week he has had four, progressively worse each time. What do you all think? Magnesium? Potassium, Zinc, Krill Oil? Any or all of those a factor? I know that magnesium didn't agree with me when I was taking it as part of a multi-vitamin regimen. I'm so disheartened for him and he feels so bad that he didn't even want to tell me about this last one yesterday. We are taking the leap and moving in together in two weeks. I have quit my job, got another one and am moving an hour away from where I have lived for 18 years. I love him and am committed to him, for better or worse, and I just want to help make things better! I even had a final appointment with my PCP yesterday and talked about the pain factor and what his opinion was. He suggested a physiatrist, but I think that's where we are with his SCI specialist in Pgh. Again, thank you for any suggestions. God Bless all of you for being here!

05-18-2012, 01:50 PM	#25
arndog Moderator Join Date: Mar 2006 Location: NV Posts: 2,901	You're just not going to get better advice anywhere than what HLH just gave. Thanks HLH.

05-18-2012, 02:15 PM	#27
Nickib Senior Member Join Date: Jul 2010 Location: Pennsylvania Posts: 104	Arndog - just reread lots of the posts from this thread and realized I didn't answer your question - sorry about that. Danny is a T-9/T-10 incomplete is what he told me. I apologize for my ignorance, I'm not real clear on complete versus incomplete. Logically (to me, anyway) a severed cord would definitely be complete and his is not severed. He fell off of a roof and, among other things punctured one lung and the other lung collapsed. They had to rush him to surgery to save his life before they could address his spinal cord injury. From T9-10 down was deprived of blood for 30 hours, which, again as I have been told, resulted in his paralysis. He is under the impression that had that not been the case he would have walked out of the hospital (sigh). He has a heating and A/C business and was coming down off of a roof when the ladder slipped, or he mis-stepped, not sure which. Just one of the reasons I have such admiration and love for this man is that no matter what, having constant pain, he gets up every single day and goes to work and just doesn't give up living and enjoying life to the best of his ability. I hope this information sheds more light on the overall situation.

05-18-2012, 11:14 PM	#29
avictoria Senior Member Join Date: Aug 2011 Location: in a house Posts: 333	Hi Nicki- a few off the wall ideas. A rock-hard painful muscle that relaxes as the pain subsides? Maybe see a good physical therapist....could he simply have chronically inflamed back/ stomach muscles? Maybe ask the docs to consider corticosteroid injections? Valium plus an NSAID like motrin? Opiates should help the pain from an acutely strained/inflamed muscle or tendon, then maybe it could be managed with massage therapy and muscle relaxants and NSAIDS as needed. Just some ideas. If you can physically feel the area is hard and tense maybe it's something musculo-skeletal. Has the doc palpated that area when it's rockhard and painful? Hope you find a solution. Keep looking into other options. Valium and opiates when taken responsibly and safely, either short-term or long-term, can be extraordinarily helpful. Avoid vicodin and the other drugs mixed with tylenol (acetominophen); tylenol is really tough on the liver.

05-23-2012, 06:26 PM	#30
Nickib Senior Member Join Date: Jul 2010 Location: Pennsylvania Posts: 104	*UPDATE* - Danny started on 2 Neurontin three times a day last Friday and oh my gosh what a difference! The weekend was great! A couple of times he was anticipating an intense spasm and as quickly as he thought it was coming on, it just stopped. I was so happy for him! He also STOPPED the magnesium all together and viola! - no more accidents! Unfortunately, he has had more pain in the last two days than he did all weekend and mentioned going up to 3 of the 300 mg Neurontin three times a day on his own. This scares me a little though because it's awfully fast and not - IMHO - titrating slowly enough. But then, I'm not the one in excruciating pain. As always, I welcome any thoughts on this next step without consulting a physician. Has anyone done this on their own? Safely? I am hopeful that once we are together each day that we will carve out time for him to use his stander on a regular basis and I am going to begin some leg exercises and some muscle massage as I truly believe those few simple things, done regularly, cannot help but make a positive difference.