Long Term use of Anit-seizure Meds
 

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.

Hi Jon,
 

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? :D) 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

Hi John,
 

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* :D 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. :rolleyes: 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

Response from John the Painter
 

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

Hi John,


I have been taking Neurontin for approximately 8 years and have no side affects that I could attribute to Neurontin alone.
I spent the first couple of weeks after starting it, feeling like I had been hit by a bus, even though I was being slowly titrated but the fog did clear and the results have encouraged me to still be on 1800mgs a day.
As has been said already many people with seizure type illnesses spend their entire life on these drugs and live a normal life span but of course there will always be an exception to the rule, we just have to hope we are NOT the exception:(
Please give my best wishes to your wife, you are a wonderful carer.
Regards Tayla:hug:

Responses: Joselita & tayla4me
 

Dear Joselita & tayla4me--

The value of not re-inventing the wheel appears quite obvious to me. Although we know that those suffering with RSD react in a very varied manner to medications, there does seem to be some consensus on some treatment protocols--at least generally.

Opioid use, anti-seizure, anti-depressants, pt, ot, no ice, and a myriad of other suggested treatment modes are common topics for most who are interested in RSD.

I am trying to get the overall feel for the jigsaw puzzle that is RSD. In other words, what have others done in a similar situation to my wife's case?

I have been married to Marilyn for 32 years and have watched a steady deterioration in her overall functioning since the event which precipitated her RSD. She is fairly prototypical of the RSD patient. To know Marilyn is now considering an SCS means she is terribly weary of the constant pain and the fight needed to combat chronic pain.

So, what should she do I ask myself. In order to come up with some intelligent options, I have gone back to the boards (forums) to do more people research as in: Well--how would you treat this lady?

Of course we all know to be careful about dispensing medical advice. None of us are doctors. We have no license to practice medicine. We can, however, pass along information that is helpful. And, I believe this forum to be a wonderful source of "People Information".

Marilyn and I will separate the wheat from the chaff as it MAY apply to her individual predicament(s). For instance, I have once again reinforced the idea that anti-oxidants may prevent the spread, or at least mitigate the disease, in some positive manner. GSE, for example as Vicc has written, seems to be the anti-oxidant of choice for many RSD folks.

I have encouraged Marilyn, to once again, begin the GSE regimen. I explained even though you may not feel any good effects, your body will thank you for scavenging more free radicals out of your body. Many meds have no fully conscious awareness that can be measured by a "How do I feel today" investigation. The medicinal activity is far more subtle.

On the other hand, an SCS device most certainly is a shotgun device. Push the button and the user is going to know if the pain was relieved, mitigated, stopped, or none of the above. The SCS user knows immediately wether relief is garnered or not.

There seems to be some issue with the idea of immediate (instantaneous) efficacy treatments and perhaps longer term treatment modalities. One problem centers on the relentless chronic pain that all sufferers simply want banished to the underworld.

Oh, but could we all click our heels three times and come back from Oz like dear Dorothy!

Once again, I am soliciting input on ideas that may help Marilyn feel better. She is on the way to multiple site RSD now and the pain is steadily increasing. This community knows the deal, so please be forthcoming with your experiences, ideas, suggestions, and care. Thanks.

johnthepainter

Hi John,

I was wondering if your wife's pain team has contemplated the use of Ketamine?
This treatment is used with considerable success here in Australia where we use the inpatient sub-coma treatment as opposed to the outpatient with booster ketamine treatment sometimes used in the US or the coma therapy which is carried out in Germany.
I have had this disease for over a decade, unfortunately it was not diagnosed early enough for me to get the maximum benefit from nerve blocks etc (though they do still provide some relief) But I still have regular Ketamine infusions which I attribute my somewhat stable condition at the moment.


There are numerous articles online written about the efficacy of low dose Ketamine Therapy, some being written by Dr Graeme Correll who was the Australian doctor who brought Ketamine Infusions to the US.
I thoroughly recommend reading these.
Wishing you and your wife much luck
Tayla:hug:

Trileptal
 

Hi there. And greetings on this thread from another Mike.

I just wanted to say that I was on Trileptal for almost two years without incident, but with regular (every sixth week) blood test to measure I believe my liver functions and my blood sodium levels. One day my neurologist tracked e down on the cell phone and ordered me to stop taking Trileptal at once because my blood sodium levels had fallen percipitiously. Another month or so and I could have sustained some irriversable nerve damage.

Now, I hadn't appreciated what Trileptal was doing for me. It had no obvious side-effects and I couldn't "feel" it in my system. That said, I was hit with a hard rebound that only went away as I was ramped up on Neurontin, a drug that now puts me to sleep almost every time I take it and causes weight gain in some people, but other than that has no other side effects, i.e., it is as, I am told, as "non-toxic" as any of these drugs. (Compare, Topamax). I hope this is helpful.

Mike

Reply to Tayla4me & Fmichael
 

Dear Tayla4me & Fmichael,

Thank you both for your time and imput. Marilyn cannot take any form of ketamine treatment due to it making her heart go nuts. So, this possible avenue is out, but thanks for mentioning that ketamine may have been a good choice and certainly one to consider for other RSD patients.

Michael--do you know if trileptal depleted your body of sodium? Could something else have messed your sodium level up? Thanks for your ideas. Marilyn was on neurontin for several years with moderate pain reduction but had to discontinue it due to an increase in negative side effects. That is why Marilyn is now on Trileptal.

johnthepainter

John -

Unfortunately, severe drops in blood sodium levels are a rare but widely known side-effect of Trileptal, which is why frequent blood tests are a must for anyone who's on it. But other than that, it was a fine med. Just sorry I couldn't stay on it.

I hope and trust that your wife will have better luck than I did.

Mike

Hi again John,

Like many, I didn't do well on Neurontin because of its side-effects. When science must try to replace what God created, it never does quite as well as the original, but in the case of anti-seizure meds, multiple attempts have given us greater hope of finding one that works well and that many of us can tolerate.

My doc switched me to lamotrigine (Lamictal), which can have some serious side-effects, but they are well-understood and easily identified, so there is little risk of long term consequences. It worked well for me.

I think since these drugs work so well for so many of us, it is worth the effort to find one that works.

The major problem I see with using GABA drugs to flood a relatively few synapses is that GABAs are commonly used throughout the body. They inhibit neurotransmission, so other synapses are over-inhibited, but no major problems have been identified yet.

I hope you guys will keep looking in this direction, and that you find something that gives the pain relief I found...Vic

Response to Michael and Vicc
 

Michael and Vicc,

Michael--I will ask Marilyn to pursue the sodium issue with her pains specialist who prescribed the Trileptal. I will also see if I can find the information on the net regarding this issue. Thanks much for passing this on.

Vicc-- Any information you can delineate concerning the use of gaba based meds as opposed to other formulations would truly be appreciated. Thanks for your interest.

johnthepainter

Low Sodium (Hyponatremia) RE: Trileptal--
 

Regarding fmichael's point about low sodium levels and trileptal see:


http://www.rxlist.com/cgi/generic/oxcarbazepine_ad.htm

http://www.medterms.com/script/main/...rticlekey=3859


Marilyn was wondering why she is getting car sick as well. I am not thinking that the trileptal in combination with driviny may be the reason. Marilyn never was car sick before taking anti-seizer meds as I recall.

johnthepainter

General Info on Anti-Seizure Med Action
 

http://www.cnn.com/HEALTH/library/PN/00045.html

johnthepainter

meds
 

Hi John..

I take Lyrica now but was switched from Gabipentin, the lyrica workd in smaller doses than the Gab and works way better as far as I am concerned. It works fairly soon in the system but took me a bit before the disorienting effect to wear off.. I now have no symptoms from the lyrica I thinkj:rolleyes:
It also takes weay smaller doses to work as well and better then the Gab.


I also take Trazadone instead of the weight gaining Amitriptlyne for painand to help me sleep at night, I take Baclofen for the cramping and jabbing and so I can walk without my legs freezing up. And Froben SR which is a NASAID but it's a time released one and I take pariet to help protect my tummy from all these meds I also take atavan for my heart and anxiety and lorazapam in the evenings B-12 and I drink ALOT of white tea.. it is high in antioxidents and seems to help alot with my swelling. Ohh and citralopram to stave off the depresion.

:grouphug:

For the nausia I was perscribed Naboline it is a synthetic THC but I prefer the real thing to better control the nausia and cut down the pain levels and reduce the anxiety.

Reply to Sandel
 

Dear Sandel,

Thanks much for your information and input. I will pass it on to Marilyn.

johnthepainter