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    Old 12-10-2006, 03:14 AM   #1
    pain research
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    anti- epilepsy and muscle relaxers side effects

    Is it just me? I cannot tolerate these two classes of drugs. I have tried so many different brands over the past several years, and they all make me so spacey that I cannot even function.
    My doctor is mad at me because I cannot tolerate them.

    Do I have to keep trying? He keeps giving me new ones and saying, 'this is different,' but they are all the same!

    Does everybody take these drugs? Or do you just tell your doctor that you do, and then throw them down the toilet?

    I am on a high does of narcotic, and I am afraid my doctor will drop me if I don't keep trying.

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    Old 12-10-2006, 09:34 PM   #2
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    Re: anti- epilepsy and muscle relaxers side effects

    Dear Pain Research,

    I use Tegretol (carbamazepine) 200 mg 3 times a day. This is the one I can tolerate. I've been placed on Dilantin, Depakote, Depakene, Neurontin, and Phenobarbital. Dilantin whacked me out. Depakote and Depakene seemed like some sort of placebo. Neurontin, which obviously helps a great many patients, did nothing for me. And, Phenobarbital...well, let's just say that I was exceptionally relaxed. This made it difficult to teach school. (Although, I wholeheartedly believe that most teachers deserve some sort of medical intervention.)

    As for muscle relaxants, I have tried Valium, Skelaxin, Parafon Forte, Norflex, and Flexeril. Valium made me think I was floating near the ceiling while looking down at myself--mildly amusing, but not practical. Skelaxin did nothing for me. Parafon Forte and Norflex weren't worth the trouble--they made my mouth terribly dry, which was the good part. Flexeril works the best for me. Flexeril, by the way, comes in two strengths: 10 mg and 5 mg. I don't know if this matters, but I think I read that Flexeril is chemically related to Elavil (amitriptyline). I don't need muscle relaxants like I once did, thank goodness.

    Nonetheless, the anti-convulsant and/or muscle relaxant courses of action appear to be a regular part of the pain management to-do.

    As for your doctor being irritated with you for not tolerating anti-convulsants and muscle relants, I have a stiff and stern suggestion for him or her--but I might lose my membership here if I state it. Just use your imagination to figure out what I mean.

    I understand the concern about your doctor thinking you're not trying enough with the medication classes you mentioned. It is awful to have the fear of losing your opiate Rx added to the pain itself (because the doc thinks you are not trying hard enough). Vent here as often as you need. We completely understand. EVEN THOUGH IT IS EXPENSIVE, A GOOD INVESTMENT (AT LEAST FOR ME) IS A COPY OF THE PHYSICIANS' DESK REFERENCE--COMMONLY CALLED BY ITS INTITIALS. THE "PDR". That way, you can read up on how "different" the medications really are!

    Let us know how you are progressing!

    Jon (Conductor)

    P.S. To answer your opening question: No, it is not just you!!

    Old 12-12-2006, 09:37 AM   #3
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    Re: anti- epilepsy and muscle relaxers side effects

    Hey PR, For me it was anti seizure meds and anti depressants. I developed new names for those dugs. Neurontin became morontin and toppamx was more like doppamax. Furtunately surgery resolved the leg pain both by reliveing compresions and by severing nerves accidently. What used to ne pain turned to nerve death which was excruciating but now numb and the anti D's sent me into manic states where I wouldn't sleep for 3 days straight but felt mighty peppy and agressive.

    I'm surprised the muscle relaxers would still cause too much sedation after months or years but ya never know. How much of your pain is nerve pain that requires more than opiates and how bad are the spasms? There are things like trigger point injections, Botox, TENS, TP pressure, robaxin infusions and massage for spasm, but using only procedures for spasm gets pretty expensive and requires frequent apts.

    The scarry thing about not taking the meds is the abilty to test or simply request copies from your pharmacy to see what meds your taking and filling. Not taking meds that aren't effective, may apear that your only taking the meds you like or it may apear your only filing meds that have vaue for diversion. We have talked anough It would never cross my mind, but I don't know your doc and how he feels about toughing out initial side effects and what he expects. It's a trick people use to divert meds so everyone is suspect if actions appear to be the same. The best bet is to continue to explain why the meds are intolerable and ineffective.

    I don't agree with taking a med that's not effective but I don't think I would risk my relationship with my doc by telling him I was taking something I wasn't. Furtunately my doc doesn't insist I take meds when I don't recieve any theraputic value or that cause intolerable side effects, he's not a believer in the shotgun aproach when it hasn't worked in the pasts. Those meds may do wonders for some, but obviously not for everyone.

    It could come back to bight you if you end up hospitalized and suddenly they are bringing you meds from a list your PM doc says your taking. That could be real ugly if they cause severe adverse reactuions or side efects. Eventually you will work through them all and either find something that works or find nothing works. Asks for samples so your not stock piling month supplies of useless meds and wasting money.

    GoodluckPR, Did you see where they isolated an enzyme in human saliva that's suposed to be hundreds of times more potent than morphine, the downfall is the expense of extracting a gram of this substance "about 7k". It must take a big bucket of spit to get a gram of what they need.

    I hope you get this worked out, I know how impairing these meds are and I'm glad I don't have a doc that insists I continue to try new ones or tries to treat the side effects with even more meds.

    Take care, Dave

    Old 12-12-2006, 10:48 AM   #4
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    Re: anti- epilepsy and muscle relaxers side effects

    i agree that many adjunct meds cause more side effects then opiates.

    I recently started taking an anti seizure med and although it helped my leg pain and even the back pain, once i got up to a theraputic dose,
    the side effects are just too much.

    I cant drive when i take it.It makes me spaced out and impairs my vision.
    its a shame because it does relieve alot of the pain that morphine doesnt touch.

    If i were bedridden it would be tolerable but im active.I work part time and need to drive and i worried about driving when i was taking the dose my dr wanted me to.Even if i tried taking the med at times of the day when i wouldnt need to drive it still was a concern.

    ive taken many different pain meds and muscle relaxers but none of them ,even combined, would leave me feeling impaired the way the anti seizure med does.
    My dr is not insisting i take this med but just trying to help with the nerve pain.I just cut down my dose to see if i can tolerate it at a lower dose.

    Only you can know what meds work for you and which meds you can and cant tolerate.Any dr who wont listen to you when you tell him the med leaves you impaireded is not the kind of dr you want treating your pain.
    As long as you give a new med 2-3 weeks trial theres no reason not to discontinue a med you cant tolerate.

    Old 12-21-2006, 01:56 PM   #5
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    Re: anti- epilepsy and muscle relaxers side effects

    Hello there

    I have taken them all Dilantin, Depakote, Depakene, Neurontin, and Phenobarbital, flexweril and the rest. Dilantin did nothing for my siezures, I couldnt function on Neurontin...I had to stop taking it within a week or two of trying it.

    Phenobarbital didnt help epilepsy either. the Depakote, topamax, and tegretal all did the trick...its just a numbers game of how often and how much.

    Now I take the big daddy of Muscle relaxers...baclofen 20MG 4 times a day...whew, now thats a doozie, I also take Clonazepam along with the trileptal. these three,alone could impare the average person. I have gotten used to the sedative effects, and have built up a tolerance I guess...(I have taken AED for 10 years) only adding the muscle relaxers recently...

    I find that if I am doing something like driving at night, or long distances in a warm car (JUST SAY NO) I time my first morning meds, in a time frame that I am doing nothing,(5:30-7:30am) depends on the time of year. when the effect wears off, I am ready to go about my day. My day is scheduled around my meds arent scheduled around my day.

    Sucks, but the alternative sucks more

    Last edited by stiff person; 12-21-2006 at 02:14 PM.

    Old 12-22-2006, 07:34 PM   #6
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    Re: anti- epilepsy and muscle relaxers side effects

    one BIG thing i found out after being on lyrica and all the nasty side effects it caused me,is now,it appears that the lyrica itself has caused me some sort of a permanent sort of changes in my brain to some extent anyways.i had really really bad problems with my eyes and my gait whle on also had a really profound effect on my polycystic kidneys in that it actually made them kind of 'swell" to an extent?they are already larger than average and at last US back in april,before the lyrica were both at around 19cms.when i took the lyrica,they both just suddenly got a bit bigger and actually shifted out from the normal posistion in the back and now are sitting partially in my mid abdominal area and go up into the thorasic to a point where the L one ends right behind my L lung now.

    when i went off og the lyrica that sudden swelling went away after day two completely off it but unfortunetly they have not shifted back into the former position.

    the real ***arre thing is that after going off the lyrica,i still had to have something to treat the neuro pain i have,i just cannot tolerate the RSD and central pain i have without them.BUT,i had been on neurontin for well over two ye4ars before starting at my pain clinic about almost three years ago and never ever had any soert of a side effect with it, was like i was just taking some osrt of vitamin or tylenol or something.nothing we decided to give the neurontin a try again just so i would be trying something to help the neuro pain.this time tho,even at only 200mgs a day(my last dosage with the neurontin way bck when had been at 3200mgs with no effects til they raised it up to 3600mgs and i got blurred vision,but absolutely nothing til that point at all)i started to have the same exact vision crap i had had with the lyrica and the overall stupidness that usually accompanies any of the anti S meds. i could not believe that reaction after actually being up to the 3200 before and nothing.i could not even attempt the next raise i was supposed to do to 300mgs per affected my eyes THAT badly.this was just ***arre, really.the neurontin tho did not have that same affect on my gait tho like the lyrica did but the vision crap was just the same.i really don't know just what in the heck happened to my brain since the lyrica was tried,but something definitely has changed in there now,defintely.

    i was doing some research the other day and see where they are now doing studies on the actual opthamologic effects of lyrica and also the overall effects on the kidneys from lyrica so i am thinking i am not the only one who has experienced these two particular types of side effects.but there was something with that lyrica that appears to have really somehow altered or actually changed things within my brain.the most likely area affected would be in the cerebellum,as this governs certain eye and vision issues along with gait.but something is most definitely different in there now that was not wrong begfore the lyrica was tried.that much i DO know.just for the neurontin to actually have any real side effects in me alone is crazy considering my past dealings with it.

    the biggest probelm with trying any of the newer meds out there is that there are sooo many differnty issues that don't come to light during the trials but once they start being used by many thousands of people,well thats when the real events appear to come to light.kinda scarey.the lyrica also had a horrible affect on my depression,making it so much worse that was going to speak with my primary about raising my lexapro,but amazingly,after two weeks without the lyrica in me,my depression got so much better,even better than before trying the lyrica,now that was wierd.

    i also think there was some sort of a reaction between my robaxin(muscle relaxer) and the lyrica appeared to exascerbate the gait and vision problems.

    this has just been my experience with the anti S meds.i am hoping to eventually find something i can take again as i really DO need it for two of my worst pain syndromes.this just all sucks soooo bad,i DO know how you feel PR.right now i am relying on all of the things i would normally use for my pain flares like my TENS,lido patches the prudoxin cream,and just hot/cold.and injections of every imaginable make.hopefully something i can find will eventually help without causing me any major repercussions.i wish ya luck PR.please keep us posted on how things are going.K?marcia
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

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