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

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

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

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

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

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

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

johnthepainter