new here! questions for pain specialist........

[scasey]

Hi, brand new here! But have already found reading through the posts very helpful. Anyway, my SCI is mainly lesions from an episode of encepelomyeloneuritis 10 years ago. I was paralyzed and hospitalized for months, and told I would never walk again. Well, I recovered enough to at least be able to hobble around very short distance. My biggest problem is with nerve pain. The constant icy-hot burning from my feet to my waist. Also, painful muscle spasms. Anyway, my neurologist has run out of meds that she feels she knows enough about to prescribe. (I feel like I've tried everything, A to Z, Advil to Zoloft and everything in between!). Antideppressants, anti-seziure meds, narcotics). Nothing has been effective and/or tolerable. She has referred me to a Pain Management specialst. (She thinks I might be a good candidate for a medication pump). Anyway, anyone here have any advice on the questions I should be asking this doctor on my first visit. (It took five months to get the appointment, I want to get the most out of it!) Thanks!

[JonnyC]

Well if you have tried everything you both can think of then you may need to try alternative methods.

Would you consider trying acupuncture (if you haven't already).

I take it you've tried Gabbapentin Lyrica / pregnabalin for nerve pain ?
Or baclafen valium / diazepam for muscle spasms ?

I'm no expert but all the best....and write down everything to ask you Pain Management doc. So your mind doesn't go blank.

[metronycguy]

what doses og the anticonvulsants did you take? which tricyclics did you take and doses? were the tricyclics and anticonvulsants and a med like ultram/oxycodone all taken at the same time?

[scasey]

I went to the pain specialist today, and it was very disappointing. (But I was kind of prepared for it). He basically said that there are no more meds try. I have lesions all over my CNS (T-something, down) and my neurologist did a good aggresive job of trying different things, but there just isn't anything that's going to make much of difference. It is what is.

How do people cope with this? I appreciate that he was being straight with me, but that's a pretty harsh thing to hear, from a highly regarded pain specialist. It's been eleven years, like I said I've tried everything.

It's everyday, excuciating, awful. How do I get my mind around that this is it? I'm 47. I have young kids. I guess I have to accept it. But how?

[cvelusc]

He basically said that there are no more meds try. That seems hardly fair of him to say. How does this one Doctor know that every remaining medicine known to man is of no benefit to you?

My Doctors responded in the same manner, so I took the research upon myself and visited my best online friend, Google. Two drugs have made a significant difference for me lately:

1. Effexor 37.5 mg, 2/day
2. Adderall XR 25 mg

Still, some days are better than others, but I sure do relish those good day... PM me if I can assist you with additional information.

[metronycguy]

what dose and mes did you try? hard to give any feedback unless we know what doses and meds were tried. everything doesn't mean much,doses are important too,
what are you taking now?

[scasey]

These are just the ones I can remember offhand: neurontin, elavil, pamelor, baclofen, zoloft, Keppra, Lyrica, Topomax, Methadone and oxycontin. For the most part, the anti-depressant/seizure meds just didn't do anything for the pain. Oxycontin took the edge off, but only for a week or so, to the point where the dose was so high that, while it helped the pain, I couldn't function. Lyrica scrambled me up so much I was virtually hallucinating. Methadone made the pain worse, but only in one leg at a time, which was really strange. I'll go back to my neurologist, who had referred me to this pain specialist, and see what she has to say. She was the one who prescribed me the original meds. She's been treating me for eleven years, since my injury. I don't think she's going to be very happy with this pain clinic. She is not reluctant to be be aggresive with medications to treat pain. She just felt a specialist would know more than her. All I'm taking now is valium for spasticity. Thanks for the suggestions. I'm pretty bummed out.

[bbs]

Scasey,
So sorry the pain specialist was of no help. :( It took a long time for me to find somthing for all of my pain, also. Lyrica seems to help a bit, I'm scared to not take it, because I could't make it through the day. I take some other stuff, but I cant recall the names atm.:thinking: The pain is so ridiculous. I am AB,every step is painful, but I'm thankful for that much.

As far as dealing with it, I just try to distract myself. I go to work..that's difficult, and I have two youngsters, also. I just try hard to ignore it. Sometimes it works! Even a few hours of forgetting about the pain makes me happy.

Well, good luck with your next appt. I hope she will come up with the magic combination for ya. I'm thinking of ya!
:)
bbs

[metronycguy]

again i have to ask what doses of neurontin did you reach before you stopped it? many people stop before they hot a decent started dose like 1800 a day. usually if your getting some relief there , they will raise it. neurontin works better 4 times a day for pain,half life is around 5hrs 25 min.
however your pain not work well with anti convalescents, you just want to make sure you gave it a good try, not a half try.
hate to find out 2 years latter the neurontin would have worked. yout took the neurontin and elavil and narcotic in conjunction , all at the same time for the treatment?
cymbalta is another new anti depression med for pain.`

[wildfire1385]

Hi scasey I am new here too and seeking the same kind of answers you are. My pain isn't from the waist down, it is from the shoulders to hands. I too have kids and I am seeking relief for pain that will not make me loopy, I can't be in another world here. My NS told me basically, there is nothing anyone can do for me. That was pretty deflating, since I still consider myself to be pretty young at 39. I don't have lesions like you do, I have a cyst in my spinal cord (c6-7) that is causing all kinds of problems, mostly pain. It is the icy hot pain you described, with electrical shots and numbness as a bonus. At times, it is unbearable. The members here are nice & responsive and that has helped make me feel better. It is nice to know you are not alone. well I hope you feel better soon.

[scasey]

Mike, thanks. I don't remember exactly how much Nuerontin I was taking, but it was four times a day, and probably around 3000mg total. I was also taking Zoloft at the time, but no narcotics. (This was a different neurologist). I also tried neurontin and keppra together. None of this seemed to alleviate the pain noticably. As I said, Oxycontin DID seem to take the edge off, at least better than any of the other meds I'd tried. But only for about a week or two, even when I got up to 60mg twice a day (in less than two months!) Is that unusual? Should I have gone for more?

This "Pain Specialist" just outright dismissed taking narcotics for neuropathic pain. But hey, I've only tried two, and he didn't even suggest anything else. This guy actually apologized for the fact that I had "WASTED MY TIME" by coming to see him!!!! Can you believe that! I would gladly travel anywhere to see a pain specialist who has experience with neuropathic pain. Would love suggestions!

BBS, thanks for the kind words. Back at ya!

[JonnyC]

Can't believe he said sorry for wasting your time seeing him! He must be useless and he knows it.
I don't think going up to 60mg twice a day in 2 months is reallt that high either although 40mg 3 times per day might be better, even with time release tablets?

[scasey]

That appointment, especially that remark, really threw me. What a thing to say to someone, huh?

I emailed my nuerologist about it today. She got back to me with a few questions, that she said she will follow up on. She sent me to these people thinking I might benefit from some type of pain pump. I don't think she's real happy about this response. I can only imagine what will happen if they cross paths anytime soon at the hospital. (which I'm sure is inevetable). She's a brilliant neuroseurgon, mid fifties. He's an anesthesiologist, maybe early thirties if that. I don't think medical school is over for him.......

Anyway, Johnny, do you have an opinion about that med another woman posted here today about. I think it's called Morphine Sulphate or something? Know the one I'm referring to? Thanks.

Oh, thanks to you too wildfire for your post. All you guys made me feel stronger!

[rdf]

scasey, you really oughta look into the pumps. They've done wonders for some people with chronic debilitating pain.

Check out http://www.medtronic.com/patients/pain.html

[David Berg]

scasey, it's not surprising that the doc said that to you. It's true that narcotics are notoriously ineffective for neuropathic pain, however they can still play a valid role. First of all, if you have non-neuro pain and it will help settle that then you'll be able to relax more and perhaps your neuro pain won't be quite as bad. Any kind of stress can kick neuropathic pain up a notch or 10.

Next, narcotics do help take the edge off of neuropathic pain for some people. Certainly not everyone, but enough that it's worth investigating. Some narcotics work on different receptors, such as methadone, so it's worth checking out a few. They may also play a role in dealing with breakthrough pain on bad days.

Most folks don't realize that many doctors receive very little formal training in treating pain. Seems odd when you consider it's a leading cause of trips to the doc in the first place.

[JonnyC]

Hi scasey, yeah I'm on Morphine Sulphate (MST) at this time. I've tried most strong opiate based pain-killers such as oxycontin, methadone, buprenorphine & Morphine etc and find Morphine Sulphate works very well and probebly better than any other I've tried.
I suppose Morphine is the strongest natural pain-killer this planet posseses.
I think that when you have pain like you obviously do, anythings worth a try?

All the best.

[Rosemary]

I have just started on pregnabalin 75mg daily: it does strange things. So the toes to neck cramp cascade seems to be breaking up into bits, so it will be just a small area of cramp which will be foul, and then be another, quite quickly. Makes the nights in particular interesting, but the days less surprising. But I had a strange side-effect, where when I took it twice a day, I would suddenly fall asleep, without warning. So the trade off is to take it once and cop the smaller cramp areas more often in the hope that the nerve supply will forget how to do the frightening big cramps that nothing will stop, since the spinal #s. Best wishes to you all, Rosemary

[firesmurf]

scasey,just a suggestion here.i too had a lesion inside my cord,but mine was a cavernoma that was there all my life and i just didn't know it til an MRI showed it and it had bled at least once already.my neuro hell is from actually trying to have it removed as the 'bleed' factor was getting to high.i take different meds for my pain as well as using the TENS unit and alot of more topical treatments.i was getting just way too bizarre side effects from the anti siezures.i also take oxycontin.this is for the neuro and the mechanical/structural,and degenerative pain i also have.but it does also help my neuro some too.

the thing about using the time release types of meds is really how much you are actually taking and how long the med realistically lasts.i ended up going to an every eight hour schedule after finding i had lost like all relief starting at around the eight hour mark,which most good PMs do know is about the full extent alot of people will only get from it,espescially oxy.mine had no problem with going to the three times a day dosing once i pointed out my situation.quite frankly,you were on a pretty low dose condsidering what your pain is probably like.

i was initially stabilized at 60-60-60,we did some changing around of my dosing schedule when my pain was getting worse during mid day to 60-80-40,up til recently my night pain was probably the most tolerable.this actually worked rather well til i tore the meniscus in my RSD knee,then about 20mgs was added so now i am on 80-80-40,i am going to need to up my night dose at my next visit since my c spine has decided to go insane on me.but overall,this dose was a pretty good one for me and did help alot with all my pain with of course,they least benefit from the neuropathic pain syndromes.i really do think possibly talking to your neuro about trying the OC again at a higher dose or even doing the every eight may help alot.in most cases,that sleepy feeling will eventually dissapate once you acclimate to the meds a bit better.but it would be worth a shot.even with most pain pumps and stimulators,most people will still need some narcotic benefit.like alot of pain treatments,any pump or stim is kind of a hit or miss type thing and depending on where your actual pain is,it may not give you the full coverage you need.it is just very highly individual like all treatments and meds are.but it could really benefit you too,you just don't really know how anything will work for you til you give it a go ya know?just where exactly is your pain located on your body?is it a large area or small or seperate areas?

have you ever tried using the lidocaine patches on the areas?there is also something called doxipin cream that i have had good results from as well.i was originally Rxed this by my physiatrist while i was in rehab after my surgery and the central pain was really my only big pain issue,besides the remaining post op pain i was having.i do not know exactly why this works or how but it just does.you just apply it like three or four times a day.it helps take away that outer sensitivity some.just some thoughts.i do hope you can find something soon for your pain.it just really sucks to live with this crap.good luck,Marcia

[valewil]

I have tried many things for back pain and have been unsuccessful so far. I had a massive herniated disk in 2/06 at L5/S1 that resulted in Cauda Equina Syndrome. Had a bilateral laminectomy/diskectomy in 3/06. Now I have scar tissue wrapped around nerve roots and CE, numbness in saddle and leg, b&b issues (although it has made progress)

I have taken Neurontin but it made me crazy, the Lyrica I took for 6 months and it worked pretty well for the nerve pain shooting down my legs but my doctor took me off of it and put me on Cymbalta, which did nothing. Now I am going to ask him to put me back on the Lyrica.

For back pain I have tried a TENS, ESI, a back brace and nothing has worked. I currently take Vicoden and when I take 2 at a time, it takes the edge of for a few hours but that is about it. I cannot stand for more than 5 to 10 minutes at a time and cannot do any of the cooking, cleaning, shopping, laundry, etc. My husband has to do everything.

What have you all tried for pain that has been successful? I am 1 year post op and I cannot take the pain anymore!

Val