I am hoping to obtain some information from those who take Topamax for back pain and their experience along with dosing. I am new to Pain Management as of 2 weeks ago after my GP was concerned my nerve pain was out of control and not responding real well to moderate opoids.
I was prescribed Topamax starting at 25mg, 25 mg per week until we get to a level that works for some pain relief, if any. I am now at 50, getting ready to go to 75 with no relief. I am, however, experiencing some side effects.
For those who have experience relief with this drug, at what dosage did you achieve your result?
I am experiencing tiredness, memory loss, a hard time finding words, a general feeling of being a bit stupid ( I got out of the shower with conditioner in my hair this morning), tingling in my feet and arms, loss of appetite, and I cannot stand soda anymore as it tastes reallly strange.
I am sure there are more side effects, I just can't remember them
Also, It is really hard to find any information on the web related to this drug and back pain, it is mostly related to migraines, epilepsy, seizures, bi polar, etc. I was amazed how empty the net was for this.
Any thoughts on this drug are appreciated.
Dave in Seattle
Last edited by davetheplantman; 11-12-2005 at 02:28 AM.
Hey Dave, Most of the drugs in the antis seizure class are used for the off label purpose of treating nerve pain. Because it's an off label use clinical info is hard to find but patient info is easy to find on forums like this. Slowly more of these drugs are being tested for FDA aproval for other specefic uses like migrane and bipolar etc. BUt they have been the front line drug class for treating nerurpathic pain for at least a decade. I can't recall wivch one did actually recieve FDA aproval for treating post herpetic neuragia because they spent the time and money t actualy rin clinical trials and submit this use for FDA aproval. Likely the reason being is that more and more HMO and script caries are denying off label use of drugs to control cost.
Unfurtuately the side effects you mentioned are pretty common with this class of medication and they end up with nick names like Dopamax and Neurontin = Morontin. They tend to cause more cognative impairment than opiates but can provde relief from nerve pain that often opiates alone can't. Personally I haven't used Toppamax but have used some of the other drugs in this class and the side effect profile is pretty much the same for them all. It's just a matter of finding out what med in this class works best for you and at what dose. The drug Neuontin is used in doses up to 3600 mgs a day. I don't often see Topamax being used beyond 100 to 150 mgs a day, but that's likely due to intolerable side effects. Basically you stop increasing when the med side effects become more impairing than yorur original DX and then it's time to try a different anti seizure med hoping to find better relief with less side effects. The same process used to find the right opiate and right dose..
Nerve pain simply doesn't respond as well to opiates as other types of pain. It's harder to treat and requires much higher levels of opiates to put a dent in. Fortunately we do have this class of meds to help and for some they are absolute life savers and for others they just aren't as effective. There are a at least a dozen different anti-seizure meds your doc can try and the all have suttle differences. If You don't find topamax is helpful than you try the next one. It's truly trial and error but more often than not one of the drugs in this class will be a mainstay of your pain treatment along with other classes of med, anti-D's, muscle relaxers and pain meds. There are also other treatments that have prven effctive for some like lidocaine patches, lido infusions, nerve blocks, nerve ablation,Tens, Tins, Acupuncture, spinal cord stims and some other methods to learn to relax and control major flaires.
Rarely does a doc guess which med and what dose will suite you best or find the right med and dose the first go round, so don't get discouraged. More likely than not you will find a combination of meds that does help but I know few chronic pain patients that get total relief from any med or combination of meds. It's not a goal docs shoot for and it's not realistic to try to maintain without ever increasng doses which lead to increasing side efects. Side effects usually limit doses before you actually reach a safety ceiling.
Good luck and welcome, hopefuly some Toppamax users will be along to vouch for it's effectiveness.
Take care, Dave C
I preferred taking the max dose of neurontin along wtih depakote, and tegretol then just topomax. But then again I was already having issues before the topomax with balance and memory, etc, etc and so it's almost like a double whammy. Especially can't stand the foot and face tingling. but I think that was happening before it also.
I tried to take Neurontin but ended up with the same side effects as those already mentioned. I was goofy, lost my memory, seemed to be off-balance, etc. etc. My PM doc has put me on a drug that is supposed to be "like" Neurontin. It's called Zonegran. I take 3 100 mg. capsules at night and I should be going up to 4 soon. I have had no side effects from this drug except loss of appetite. You'd have to check the web to see if it acts in a similar fashion as the other pills that effect nerve pain. Or, you can ask Dave. Whatever its intended use, it sure has helped my nerve pain. All the best to you. KathyMac
I don't right off hand remember what my dose was and I took it to prevent migraines for about 3 years. I couldn't drink Dr. Pepper the entire time, my dr. said the acidy taste was normal for people in topamax and I wouldn't be able to drink any of the sodas. Before I go off of it, I too felt like something was wrong in my head. I actually wondered if maybe I'd had a mini stroke, my dr. said topomax does that to some people. I was dropping things all the time, I still do, some but not like I was. The tingling, like hands,feet, fingers and toes waking up, got to where it caused actuall pain. Sometimes so bad all I could do was wait it out til it eased up. Toward the end of the time I was taking it, the tingling went even to ther top of my hands and part up my wrists and part up my ankles. It caused a itching in/on my head that was horrible. I'd wake up during the night scratching my head so hard, between the scratching and the itching it felt like my head was on fire. My dr. weaned my off of it, thank God, then I had a few weeks with migraines and am now on Gabitril. So far so good. I can drink my Dr. Pepper, although my weight would probably benefit from laying off of it. No tingling, painful or otherwise, my head feels fine. I still have brain problems sometimes but usually not quite as bad and am told it is part of my fibro. Fibro fog they call it. I don't think my appettie or weight went down while I was on the topomax, but I did have all the rest after a while. I guess all that went on for a year or so befoe getting off of it. The not being able to drink soda happened the first week though. But like I said, I don't remember what my dose was. I was almost convinced I might have MS before I go off it. I feel soo much better now. It was good and helped alot for a while but I was happy to quit taking it.