Hello RSD Folks,

John the Painter here. As part of our study and search for better pain management options, Marilyn and I have been discussing her use of Trileptal to manage pain. I believe it is in the same class of drugs as Neurontin.

Marilyn had to stop taking Neurotin because the side effects finally kicked in to the extent where she could no longer tolerate them. She tried Lyrica prior to the switch to Trileptal. The Lyrica also interacted badly with her system. As mentioned in a previous introductory thread, Marilyn is not a candidate for any form of Ketamine intervention.

So, our question is this. How long can a person tolerate an anti-seizure medication(s) without blowing out the kidneys? Additionally, and just as importantly, how does long time use of the types of meds RSD sufferers use affect the body generally?

I am trying to research other reasonable choices that may help Marilyn without resorting to a more radical treatment protocol.

Please keep in mind the only pain med Marilyn uses is Trileptal. It is an anti-seizure medication as opposed to an opioid. Marilyn will not consider opioid use at this time. Years ago, Marilyn also tried the anti-depressant route for pain relief and found no help with that approach.

We would appreciate ANY input on the specific topic and any ideas generally on how you RSD bravers of that cruel world (including my wife) navigate the deep waters of your pain.

Hi Johnthepainter,
I was put on Lamictal in July and I have to say it is starting to work on the nereve pain. Neurotin did not work for me. I do take oxycodone. I don't like taking it like the "normal" people think I do but if I didn't I would be in bed and not walking at all. It does not take all of the pain away, and I don't get high off of it. Its the only way I can function even if only alittle bit. I wish your wife well. She's lucky to have a husband like you.

Sue K.

I just tried the Neurontin a couple of days ago and it just basically knocked me out. I have been so tired and out of it. Today my eyes feel swollen.

It has made my bladder pain worse also. I have a disease called Interstital Cystitis and it made the pain so much worse. I have tried it before and the side effects just get to me. I know it works for a lot of people but I can't do it either. I'm a lot like your wife when it comes to taking meds. I have tried depression meds, pain meds, nerve pain meds, you name it and I just can't take them due to the side effects. I ended up falling a lot due to being on a lot of them from the dizziness they cause.

I am on Methadone, have been for over 4 years. My dosage is such a low dose that I have no side effects from it and it does help with the pain. A lot of people can't take it either. I am monitored enough by my Dr. that I feel safe with taking it. Like any other Narcotic, it can cause major problems just like any of the others. I have no side effects from it.

I think too what helped me is I have great Drs. and they jumped right in and did what they needed to do from the beginning. So that makes it easier for me so that I don't have to be on a lot more meds.

I think it's great that you are so helpful to your wife. Bill was ill for so long that we were kind of like the blind leading the blind when it came to helping each other with medical problems. He did try for awhile to keep up with what was going on with me but I just had too much going on. He did wait on me hand and foot though. You both are very lucky.

I hope she does finally find the right meds she needs to cut her pain down.

Ada

This is a good example of how meds affect everyone differently.

I have been on Trileptal for many years for nerve damage. I have no effects with it at all. There seems to be no difference with taking it. But it is a supposed to be long-acting drug, where you need to be on it for a while to get your system up to theraputic levels.

The way it was explained to me, it is not a direct pain reliever. But since "nerve wackiness" (how's that for a medical term? ) is the cause of idiopathic seizures and also RSD, there has been some success in using it for one of the treatments.

I have a very good PCP and a very good personal pharmacist who both watch my meds carefully. I have never heard either one be concerned about kidney damage, although I do get function checked at least twice a year because of other meds I am on.

My wife has mild epilepsy and has been on a variety of anti-seizure medications since 1979, with no kidney complications.

Mike

Hi John,

I never looked into long-term effects of these drugs. I figured they gave me significant pain relief, and I don't really care about long-term effects.

I have taken opiates every single day since April, 1979, so I'm not gonna worry about antiseizure meds; all those oxys are gonna catch up to my liver someday. They are killing me, but without them I would kill myself; the pain would be too intense.

The last time my doc suggested a liver enzyme test was 1997. I asked how he would change my pain meds if he knew I had a liver disease, and he admitted he could only keep prescribing me opiates.

I don't want to know about bad news I can't do anything about; surprise me. It would be nice if the surprise came quick, and quiet, and tomorrow, but I'll hang around and wait for the call.

I don't think the situation with anti-seizure meds is that extreme: There are a lot of people who begin taking these meds in childhood, and they can expect to take them for the rest of their lives.

I'm not a big Pharma fan (in fact, they **** me off), but I think that they would have some hints by now, and would be warning pts about potential risks; they know the vast majority will continue because they have no choice.

I think you're right in trying to learn all you can, but I imagine it will come down to how much pain relief she gets. We'll do and try almost anything to lower the pain...Vic

Vicc, has a good point about having to take the meds. I would take my Methadone no matter what anyone said to me unless the side effects kept me from doing it. It's a matter of trying to keep the pain level down.

Mike has a good point also about Drs. If your wife has a good Dr. then ask him to do the test when needed to check and see if the meds are affecting her kidneys, liver, or whatever.

Like Mike, I have the best PCP ever and I have a very good Pharmacist so I call Steve if I have some question about meds if I can't get my Dr.

I will say though on the side effects, I do question taking some meds when you see some of those side effects coming out and not going away. Bill was on a med for high blood pressure that I am sure most likely helped kill him. The Drs. would keep putting him right back on it. I could see the side effects from it and they were horrible.

A lot of time the Drs. don't even know all of the side effects due to the pharmaceutical companies leaving them out of the little book the Drs. use. I saw that first hand with Vioxx.

I do think you have a legitimate concern about the meds but my thought would be make sure your Dr. is doing the test needed to make sure she isn't being effected by the meds.

Ada

It should be noted that neurotin comes on like gang busters when you start it. After a few days it didn't make me sleepy at all.

I am one who does actually have liver tests done, more than once a year usually. It is not due to what I am taking though. I do take Neurontin, Morphine Sulfate & OxyCodone for BTP.

I happen to have an enlarged liver which was found Oct 03 & I was DX'ed in May 07. I do believe I had the beginnings of RSD which started Spring/Summer of 03 with "Nerve Wackiness" as bassman called it. I like the term alot *LOL* I do not have a sick liver the doctors tell me. I do have one test that is slightly elevated but nothing to be super concerned about but in which we do now watch. This started last Spring. I do not drink alcohol nor do I use Tylenol anymore. At this time without doing a biopsy on my liver it is not considered to be what they call a "sick" liver. They consider my having a biopsy to be more risky than not doing one. But even though I have an enlarged liver no one is considering taking me off Neurontin, Morphine Sulfate, or OxyCodone. I do trust my doctors. (the enlarged liver was found during an echo which was done looking to see if I had any weakness in the abdominal artery to make sure I wouldn't have an abdominal aneurysm. My Dad died of this & it is hereditary)

I will try to let ya'll know if I am taken off any of these drugs due to problems with my liver. I will try but the way the ole memory works lately don't count on it. Like Vic I would have to really think this over as whether I could actually stand to live without taking these meds. They are the only thing that lets me stay even remotely sane. Like Vic, I would rather not know at all. Unfortunately, I will probably end up knowing................*sighing*

DebbyV

To Debby---mahotep-dreambeliever128-Vicc--bassman-sue k

Thanks all for your considered responses thus far into the thread. I view the diversity of reaction to medication as a very major obstacle to the study and amelioration of RSD. I prefer to use RSD because it is quicker to write the CRPS I & II etc.

When everyone reacts so differently to the same medications, it is so difficult to come up with any policy resembling uniformity of action. You can't tell an RSD patient to take this or that antibiotic, come back in two weeks, and it will all be better.

Liver and other systemic problems often occur in those taking long term meds. The choice to take medications is, of course, highly personal. If the pain is intolerable and you are thinking about bullets, guns, or high bridges, any pain relief is welcome--of that I am positive.

The fact that many RSD sufferers chose to take opioids seems prudent on a case by case basis. I have done enough research to know that using opioids for pain reduction is part and parcel of pain management. And, it should remain so. The prosecution of doctors issuing these types of medications should be restricted to those who are proven to abuse the privilege and just really sell drugs as opposed to prescribe them for legitimate pain management reasons.

Marilyn has chosen not to use opioids. That is her decision. The negative affects for her outweigh the benefits. The trileptal she takes just removes the razor edge to a knife edge of pain. Marilyn doesn't like to use the McGill Pain Scale when discussing her pain with me. She is very brave and tries to hide her pain from me. Most of the time, an outsider would not know how much she suffers. Many times, I too am unaware consciously of this war of the body and spirit.

So, since my wife's prognosis is pretty awful, I am trying to get an idea from your folks on what we might try. I think that several have mentioned long term use of anti-seizure meds doesn't appear to harm the body over the long term. I'd like some more opinions of this aspect if possible.

I have read a lot of your work Vicc and we have spoken over the years. I am very glad to see you being so productive.

Please keep the input going and thanks you all for your time and opinions. May you make peace with the pain and put the demons in check as best you can.

johnthepainter

John,
I don’t know anything about Trileptal, as I have never hear of it, let alone taken it. I do, however, know about Neurontin. My experience with it wasn’t a good one.

I understand that this med has been a “life saver” for many others. For me, though...it was just the opposite. I took Neurontin for about 3 years. Those were the worst years of my life. The reason that I kept on taking it, is because the pain doc that I had at the time kept staying that my dosage wasn’t right, and needed to be upped when I would complain about the side effects and how the med wasn’t helping with my pain at all.

Side effects that I suffered were;
HORRIBLE “Brain Fog”. I literally had a hard time thinking and concentrating on ANYTHING. I would know that I knew something, but couldn’t get my brain to work. Elementary school homework escaped me (my kids were in Elementary school when I took this med. They are now in college). I couldn’t drive...or I should say that I refused to, because I knew that I was a danger on the road. I couldn’t concentrate, couldn’t think, had slow reaction time, and was just too distracted to be safe on the roads at all. Basically, I felt completely DRUGGED the whole time that I was on it. Drugged out, messed up, stupid & spaced out, and didn’t feel that I had control over much of anything. NOT how I want to feel. Not at all.

Slurred Speech. I don’t know if this was part of the whole Brain Fog thing, or something else. I just know that it only happened when I was taking Neurontin.

Blurry Vision. This was another reason that I couldn’t/wouldn’t drive. Not only did I have all of that stuff going on that I previously listed, but I also had a hard time focusing on things, even with my glasses on. After I finally weaned myself off of the med, this problem cleared up too (Well...I was back to my regular eye sight level. LOL.)

Depression, Irritability and Mood Swings (DRASTIC ones). My Mood didn’t swing to “good” very often, it was usually swinging around from different levels of hopelessness, irritability and bitchiness, to out right anger...almost rages. NOT a pretty thing at all. It was during this time that I was having some serious suicidal thoughts. I suffer from Chronic Clinical Depression, but NEVER has it ever been as bad as it was during my time with Neurontin. It was....well...a very dark and scary time for me and my family.

Big time, awful, weight gain. I haven’t been able to get rid of all of the weight that Neurontin helped me to pack on. Some of it, yes....but, not all of it.

And, to make all of this even worse, it did not help to relieve ANY of my pain at all. This med was very expensive when I was taking it too. Financially, physically, and mentally, I simply could not even try to continue to justify the cost of this med. Not when it was causing more problems, and not helping with any.

I was put on Neurontin at the peak of it’s hey day. It was being touted as a “Wonder Drug”, and doctors were prescribing it for all sorts of things. I had even heard of it being prescribed to some ladies as a treatment for menopause and it’s symptoms. Because of it being pushed so hard at so many people, and because I had a Pain Doc that didn’t want to prescribe someone of my age (I was in my mid 20's at the time) narcotics....I was told that my dosage needed to be adjusted when I would keep on complaining about the side effects I was experiencing and it not doing anything to help with my pain levels. My dose was UPPED each time, instead of decreased, with my doc saying that when we hit the right dose, it would help me like it was supposed to. He also prescribed other meds to try to help with the side effects that Neurontin was causing me. I think that it was because of my problems with thinking and reasoning, that I allowed this to go on for so long. Even though it didn’t make sense to me. But so many things didn’t...or I had so much trouble with getting them to, that I made the mistake of trusting that doc.

I don’t advocate for ANYONE to take themselves off of any med without their doctor’s supervision or knowledge. But, I do know that that was the best (and only) thing that I could do at the time. I don’t know if I would even be here now if I hadn’t taken matters into my own hands like I did. This doc eventually dropped me from his clinic after he implanted (and then did 3 revisions to in less than 9 months) a Spinal Column Stimulator in my lower back (I have mainly lower body RSD. That is where it started, and that is where it is and always has been worst. I have had some spread upwards though) that failed horribly. I blame this on HIM too, and not necessarily on the device or company. That is a long story that I won’t get into here. I was almost through weaning myself off of this med when he sent me to another PM Doc. I was forthright with him, and explained EVERYTHING, and he agreed that Neurontin wasn’t a drug for me (he also removed my failed SCS, since it also was causing problems instead of helping with them).

I have since tried a couple of other anti-seizure meds. The next one was also another GABA drug. While I didn’t have as many or as awful side effects from it, it also didn’t help to relieve any of my pain. So, I didn’t take it for more than about 6 months or so. (I can’t remember the name of that drug right now. Gabapentin or something like that. Sorry, having a brain fart right now. LOL).

The last anti-seizure med that I have taken is Topamax. It DOES help with my pain...but I could only take a fairly low dose of it, as it could also make my moods tend towards the irritable/angry side. My new PM Doc (the last PM doc I had..the one that removed my SCS, left here to move up to chicago in May...so I am on my 3rd PM doc. I am pretty lucky that I have only had to go through 3 of them in all of these years, with only ONE being...well....pretty awful) has gotten me off of that, at least temporarily. Reason is because it has gotten to where it isn’t relieving as much pain as it was, and I can’t increase my dosage (due to the irritability/anger thing)...AND it has started making my hair fall out in quite astonishing amounts. Right now, we are trying to see if letting it all get out of my system for a while will allow me to take it without having to increase the dosage, and without having my hair fall out like it was. He is also looking into yet another med in the same family as Topamax, but I can’t remember it’s name, other than that it starts with an “M”. I will find out more about it when I see him on the 25th.

I understand that for whatever reasons, your wife is making the decision to not take narcotics at this time. I myself take Oxycontin for my long acting med, and Oxy Ir (Oxycodone Immediate Release) for my break through pain med. I also take Zanaflex to help with the muscle spasms and cramping that I have problems with too. Other than those meds, the only other thing that I take is Welbutrin for my depression. If it wasn’t for my pain meds...I don’t like to think of what condition I woud be in, or what my pain levels would be.

I will say this too, before I wind this up; Neurontin messed me up worse than ANY Narcotic med I have ever taken. IN fact, I haven’t taken a pain med that has messed me up, or made me feel high in anyway whatsoever. Not so with the Neurontin. I didn’t so much feel some kind of enjoyable high (I don’t like that feeling anyway...I don’t like feeling stupid,or spacey in any way, or that I don’t have control of myself)...but I was most definitely “Messed Up” when taking Neurontin. It was like feeling supremely drunk for...well....every day. That stupid. Spacey, unable to concentrate feeling. I haven’t ever gotten that from my pain meds, and I Don’t WANT to either.

I just am saying this, because if it is the idea that narcotics will make her feel like she is spaced out, not able to think or concentrate, or not in control of herself or her situation at all....this is something that OTHER meds can also do.

I agree with everyone here that has said that they think your wife is very lucky to have you. She is! I think that you are a wonderful man to be doing all that you are, and trying o find out as much as you can about RSD and all that goes with it, and about the things used to treat it. I hope that you both are able to find her the kind of help/relief that she needs.

Take Care,
Jose