Namenda ??

[bollefen]

Seeing a new Neuorologist for new issues. I mentioned I'd tried everything and would try anything for CP.

He's prescribed Namenda, typically used for dementia (well I may have that too LOL)

Only on it a couple days, can't find enough info. His basic input is that it helps dysfunctional neurological problems, and thought it worth a try? Titrating up said if I react poorly can stop but he wouldn't expect anything til reaching full dosage for a week.

Anyone else trying this or know much?

Ket

[hlh]

Still relatively "new" in the pain world. I don't think it will be a silver bullet.

Yes, it was developed for Alzheimer's disease, and there is some thought it might be useful in other people with memory problems. My father was started on it after his accident (he had a traumatic brain injury as well as a SCI), as I thought it might be useful and could help pain as a nice "side effect". He is only on 1/2 dose, and honestly I should probably increase it or just stop it.

My mother also tried it for her refractory migraines. No effect.

There is only one dose used at this point, so you wont be able to go any higher because higher doses have never been used. It is worth a try for tough pain cases. But in tough cases, in general you need a combination of medicines =

neuro pain med +
opiod +
spasticity med (sometimes)

and if there is any sleep problems or mood problems, those need to be treated too. We know that poor sleep or depression/anxiety can make pain worse, and are intricately linked to pain. Fortunately, some medicines can kill two birds with one stone. Like cymbalta may treat neuro pain, and help depression.... lyrica might help mood swings, and help neuro pain.... nortriptyline/amitryptyline at night can help neuro pain and sleep ..... etc.

The hardest part is finding the right mix/layering....

[dejerine]

Bill

The drug is an NMDA receptor antagonist. NMDA is in fact on the far side of the synaptic connection in pain transmission. But then again, so are MANY other things. NMDA (n-methyl-d-aspartate) is really almost a univeral in what is going on at the synapse, so yes, while it can be connected to pain, it can be connected to memory and lots of other things. It is not uncommon in the PDR to read something evasive like this. "It is thought that this drug exerts its effect via NMDA". This statement is sort of like saying "This phenomenon is thought to be related to energy". It means "We have no clue how this thing works, but we did find some measurable activity of NMDA, so that must be it, and don't ask us what happens down the road after NMDA because we don't know and we have no intention of spending the money to find out unless the FDA makes us) The body is complex, but relatively economical with the number of neurotransmitters. It is really the receptor (of which there are myriad) we are interested in, not the fact that something is actually going on. Read Kenneth Hargreaves stuff on peripheral nerve injury pain and you will see where a more focused look at pain is discussed.

In neurotransmission, it is not the neurotransmitter which determines the final product, it is the receptor. Gasoline does not make ALL machinery do the same thing. It does not for example, make my weed whacker able to fly. Using memantine is not completely off the wall, and I sincerely truly hope I am just the biggest jerk for being a detractor, but you have CENTRAL PAIN, which is high grade. There is no such things as a medicine to "generally" fix neurologic "abnormalities". That kind of claim belongs in a health food store, from a minimum wage clerk (who has not really personally been to the rain forest to see if natives with central pain are cured) not in medical offices. I hope he is not just relegating you to someone who needs to think a little more clearly. While this is undoubtedly true of anyone with severe central pain, I am going to be one shocked dude if memantine helps you and I don't want to see you get knocked down again. My own doctor typically responds with some drug we haven't tried yet, but I won't let him go there. I tell him if there is no medical literature showing benefit, I would prefer to stay on what I use, since I know I get a little benefit.

I hope you will carefully examine the other factors in your life. Forgive my saying it, but your pain is probably about at the same levle as Alan's or mine, or Cass's or Hip Crip. Yet, you seem to be absolutely at your wit's end. I may be wrong, but I feel usually this point is reached when circumstances AROUND you are putting pressure on you, when expectations of others are unrealistic, and I hope you seriously look for little reliefs. Little things mean a lot in this condition. Is there music you like. Is there a quiet park, or a pretty stream, or some person stupid enough to believe you who listens to you. Intelligent people rarely credit central pain. It is generally the compassionate person who would credit anything. There is this personality type who tends to give credibility to ANYONE, and that is often what it takes to get someone who is not very discriminating to stop and listen and say, "That sounds really bad". I realize this, but it is still helpful to have a friend who believes what I say when I need to vent. The intelligensia cannot learn. I might have a conversation with your neurologist asking him where he places central pain in the hierarchy of pain states. If he doesn't realize he is dealing with a forest fire, he may just spray a little water on it, as it were.

When something is recommended, always go to PubMed, to see if anyone has actually done a study. If there is no study, it is not rude to ask your doc the rationale for his prescribing it. It he reaches the point where he must admit he has nothing, then you can ask him, then what resources for coping is he aware of. medicine is not just writing scripts. He may know of some group, or community resource. I happen to have really severe muscle pains. In me, these are confinement cramps, like so called "lactic acid buildup" X 10.000; also called "isometric dysesthesia" Some people feel this as a drawing or tearing sensation. It varies from person to person. I often feel some kind of massage might help, but if I go to the physical therapist, I get TENS, just like everyone else they have seen that day, TENS being contraindicated for central pain around the head and neck and possibly elsewhere, so I don't bother. A massage therapist scares me to death since I don't even want to think about anyone rubbing my skin. So I just tough it out. There is no way to draw water from a well which does not exist. Authority figures are in no hurry to be at a loss for anything. So you have a very thick shell to crack and just get them to listen. Try getting your neurologist to do a little investigation. David's site has some of the very best material around. You might xerox something off and ask him to read it before you speak together again. I like a lot of the terms used here, like battery acid, which is better language than I can think of. So you could also copy off some of the posts here.

You mention jolts or electric shocks, ie lancinating pain in your posts. These are very intense but intermittent, and do tend to get easier to bear over time. If that is any encouragement.

Central pain tends to get worse slowly, while our coping mechanisms tend to become exhausted rapidly, so try to avoid stress. Duck everything and you may find in your foxhole something that actually distracts you. For some this may be throwing yourself into a project, for others it may be hibernating in a cave. Better than hibernating in a coffin. The constraints of society do not apply to you, except you must keep you clothes on when you are out. Other than that, you gotta invent your own life. Your photography is excellent. Keep thinking about it. Weddings?

I saw a documentary about the poor diets of school children, which actually looked pretty good to me, even the cheetos, pizza and mountain dew. Still no documentary about central pain, which should be easy at ANY spine hospital, but then people there are in the early stages and worried if they will walk or how they will use the bathroom. It is only later when central pain sets in that they start to be able to say anything about it. Don't kid yourself that pain in OTHERS is entertaining. It isn't. Not to you, and definitely not to anyone else. Only to the weirdos in the same boat here will you find people fascinated with what you have to say. When you are one hundred percent losing it, others can say, "Hey, I am only 98 percent losing it, so I am doing well." Pathologic, but then what isn't about CP?

[dejerine]

Bill

The drug is an NMDA receptor antagonist. NMDA is in fact on the far side of the synaptic connection in pain transmission. But then again, so are MANY other things. NMDA (n-methyl-d-aspartate) is really almost a univeral in what is going on at the synapse, so yes, while it can be connected to pain, it can be connected to memory and lots of other things. It is not uncommon in the PDR to read something evasive like this. "It is thought that this drug exerts its effect via NMDA". This statement is sort of like saying "This phenomenon is thought to be related to energy". It means "We have no clue how this thing works, but we did find some measurable activity of NMDA, so that must be it, and don't ask us what happens down the road after NMDA because we don't know and we have no intention of spending the money to find out unless the FDA makes us) The body is complex, but relatively economical with the number of neurotransmitters. It is really the receptor (of which there are myriad) we are interested in, not the fact that something is actually going on. Read Kenneth Hargreaves stuff on peripheral nerve injury pain and you will see where a more focused look at pain is discussed.

In neurotransmission, it is not the neurotransmitter which determines the final product, it is the receptor. Gasoline does not make ALL machinery do the same thing. It does not for example, make my weed whacker able to fly. Using memantine is not completely off the wall, and I sincerely truly hope I am just the biggest jerk for being a detractor, but you have CENTRAL PAIN, which is high grade. There is no such things as a medicine to "generally" fix neurologic "abnormalities". That kind of claim belongs in a health food store, from a minimum wage clerk (who has not really personally been to the rain forest to see if natives with central pain are cured) not in medical offices. I hope he is not just relegating you to someone who needs to think a little more clearly. While this is undoubtedly true of anyone with severe central pain, I am going to be one shocked dude if memantine helps you and I don't want to see you get knocked down again. My own doctor typically responds with some drug we haven't tried yet, but I won't let him go there. I tell him if there is no medical literature showing benefit, I would prefer to stay on what I use, since I know I get a little benefit.

I hope you will carefully examine the other factors in your life. Forgive my saying it, but your pain is probably about at the same levle as Alan's or mine, or Cass's or Hip Crip. Yet, you seem to be absolutely at your wit's end. I may be wrong, but I feel usually this point is reached when circumstances AROUND you are putting pressure on you, when expectations of others are unrealistic, and I hope you seriously look for little reliefs. Little things mean a lot in this condition. Is there music you like. Is there a quiet park, or a pretty stream, or some person stupid enough to believe you who listens to you. Intelligent people rarely credit central pain. It is generally the compassionate person who would credit anything. There is this personality type who tends to give credibility to ANYONE, and that is often what it takes to get someone who is not very discriminating to stop and listen and say, "That sounds really bad". I realize this, but it is still helpful to have a friend who believes what I say when I need to vent. The intelligensia cannot learn. I might have a conversation with your neurologist asking him where he places central pain in the hierarchy of pain states. If he doesn't realize he is dealing with a forest fire, he may just spray a little water on it, as it were.

When something is recommended, always go to PubMed, to see if anyone has actually done a study. If there is no study, it is not rude to ask your doc the rationale for his prescribing it. It he reaches the point where he must admit he has nothing, then you can ask him, then what resources for coping is he aware of. medicine is not just writing scripts. He may know of some group, or community resource. I happen to have really severe muscle pains. In me, these are confinement cramps, like so called "lactic acid buildup" X 10.000; also called "isometric dysesthesia" Some people feel this as a drawing or tearing sensation. It varies from person to person. I often feel some kind of massage might help, but if I go to the physical therapist, I get TENS, just like everyone else they have seen that day, TENS being contraindicated for central pain around the head and neck and possibly elsewhere, so I don't bother. A massage therapist scares me to death since I don't even want to think about anyone rubbing my skin. So I just tough it out. There is no way to draw water from a well which does not exist. Authority figures are in no hurry to be at a loss for anything. So you have a very thick shell to crack and just get them to listen. Try getting your neurologist to do a little investigation. David's site has some of the very best material around. You might xerox something off and ask him to read it before you speak together again. I like a lot of the terms used here, like battery acid, which is better language than I can think of. So you could also copy off some of the posts here.

You mention jolts or electric shocks, ie lancinating pain in your posts. These are very intense but intermittent, and do tend to get easier to bear over time. If that is any encouragement.

Central pain tends to get worse slowly, while our coping mechanisms tend to become exhausted rapidly, so try to avoid stress. Duck everything and you may find in your foxhole something that actually distracts you. For some this may be throwing yourself into a project, for others it may be hibernating in a cave. Better than hibernating in a coffin. The constraints of society do not apply to you, except you must keep you clothes on when you are out. Other than that, you gotta invent your own life. Your photography is excellent. Keep thinking about it. Weddings?

I saw a documentary about the poor diets of school children, which actually looked pretty good to me, even the cheetos, pizza and mountain dew. Still no documentary about central pain, which should be easy at ANY spine hospital, but then people there are in the early stages and worried if they will walk or how they will use the bathroom. It is only later when central pain sets in that they start to be able to say anything about it. Don't kid yourself that pain in OTHERS is entertaining. It isn't. Not to you, and definitely not to anyone else. Only to the weirdos in the same boat here will you find people fascinated with what you have to say. When you are one hundred percent losing it, others can say, "Hey, I am only 98 percent losing it, so I am doing well." Pathologic, but then what isn't about CP?

P.S. I hope we are not just into dart board prescribing.

[bollefen]

Pogo

"I hope you will carefully examine the other factors in your life. Forgive my saying it, but your pain is probably about at the same levle as Alan's or mine, or Cass's or Hip Crip. Yet, you seem to be absolutely at your wit's end. I may be wrong, but I feel usually this point is reached when circumstances AROUND you are putting pressure on you, when expectations of others are unrealistic, and I hope you seriously look for little reliefs. Little things mean a lot in this condition. Is there music you like. Is there a quiet park, or a pretty stream, or some person stupid enough to believe you who listens to you. Intelligent people rarely credit central pain. It is generally the compassionate person who would credit anything. There is this personality type who tends to give credibility to ANYONE, and that is often what it takes to get someone who is not very discriminating to stop and listen and say, "That sounds really bad". I realize this, but it is still helpful to have a friend who believes what I say when I need to vent. The intelligensia cannot learn. I might have a conversation with your neurologist asking him where he places central pain in the hierarchy of pain states. If he doesn't realize he is dealing with a forest fire, he may just spray a little water on it, as it were."

Thank you for a balanced response. In a word yes.

I really don't think i'm any worse off, well maybe a little? as I can find anything that works at all, but as a practical matter No we all sail the same ship, so forgive the brief whine.

I actually don't have anyone to talk with, wife is a loving soul but is looking for the magic pill cure. the AROUND me has been vastly overlooked.

Ah yes Pogo. I have met the enemy and it is me, to paraphrase.

I am seriously looking at my life as part of the issue. While following the dark path mentioned other places/times I have significanly lightened my life eliminating "stuff" and things form the past that magnify the issues of before/after.

I'm half way through Jon Kabat-Zinn's Mindfulness program and have found that it took the month of daily meditation etc., and practice, reinforcing what I learned in my early exposure through martial arts, to see any benefit. And yes it is helping.

I also wondered about the dart board and my willingness to participate, I shuld know better, Thank you for the sources cited.

Some parts of the pain have become manageable / almost like "this is normal" I guess after long enough. I don't really remember any different.

Arn has mentioned music, think you and others have and I try to keep music on now.

I ride the line but am seeing a change in my coping skills through the various bits, enough pennies make the quarter, dollar, formula is helping.

Having shared some of my true inners with family has also helped and I am getting more consideration and less pressure to do for them I married into a needy family that can't do but come from an independent family all of whom can do. Good thing they can't see this. But I love them all dearly.

Also been playing in photography within the constraints of what I can do, and it added another quarter, sent some pics to HipCrip and it started as a just a couple and I made it into a satisfying and distracting project including a number of prints.

I have also reconciled myself to a simpler life $$ wise. I made embarassing $$ and the SCI plunged me into ruin and I am almost out, another reduction in stress, and I am not rewalking that path, I've adjusted comfortably and live fine.

Finally I cannot say enough about the support here. My few calls to a suicide hotline have been fine in the moment but I found an absence of grasp of what drives me. Here the most knowledgeable scientists/docs to the most regular folks, have been what really kept me through most, they "get it" and repond from knowledge.

I think i have found a new path to walk, it is strange to me, but i will take it, it is new, calm and more peaceful than any I have trodden.

Apologies for the scattered thoughts.

With Kindness and respect to all of my friends here who have done so much for me,

ket

[hlh]

P.S. I hope we are not just into dart board prescribing.

Appreciate all or your experience and thoughts.

Many medicines were "discovered" in Neurology as helping pain fortuitously. That's how we discovered the benefits of Neurontin, amitriptyline, Cymbalta etc... just to name a few. Nameda was developed for memory problems, and then severe migraines (much more common then SCI associated pain) resolved in some refractory patients who took it. Was it a random, coincidental occurrence? Or was it the Namenda..... It's true you can't know until you do a randomized, blinded, controlled trial. And those are very very hard and expensive to do.

It is always important to go to the most experienced, knowledgeable, doctor who is reading the journals and going to conferences so that they are up on all new developments, discoveries in the field. Of course, these doctors are hard to find.

Unfortunately, it is true that many doctors do not know how to treat pain well. Many mistakes are made. We read about them on this board all the time. And unfortunately, when we change doctors to look for new/"better" ones, sometimes that is held against us in the pain world as "doctor shopping". It is not fair that those who suffer the most, have the most critical eyes looking at them.

[alan]

Oh, I'm at my wit's end - have been for quite a while. And, I too am my own worst enemy. If I was my pet, I'd put me to sleep.

Do talk with the doc, Bill. Maybe he has heard about some relief from that med.

[serene8]

Hi bollefen

I'd just like to ask you how your doing on Namenda since its been almost a month. Since you have already started it I hope you don't give up mid-way without giving it a chance. Unless of course you have adverse reactions.

I researched this med after reading your post, and it appears to have considerably helped people with CRPS which is another terrible intractable chronic pain. I believe CRPS is probably a kind of central pain as well.

I hope it works for you. I have central pain as well. Could you post your feedback and experience so far? Any pain reduction so far?

Thanks and regards.

[NW-Will]

Any others tried this ? Verdict? worth a try ?
My doctor is prescribing it for me!
Share you 2 cents

[smity50]

My 2 cents, look up tardive dyskinesia.