[lovefamilypets]

I really am so confused and don't know what to do. My Neuro put me on lamotrigine 4 months ago and we have been slowly titrating up. One month ago I hit 75mg. About at the same time, my burning pain started to increase exponentially and I started to have obsessive thoughts and lots of mind racing. I've only been sleeping 3-4 hours a night and the RSD has spread to my upper thighs. When I told her about this she said that she had never heard of these side effects and that I need to stay on it until I hit 300mg.

I am praying that it is the medication instead of my RSD getting worse. I really want to get off of it to see, but I don't have her consent. Has anyone had a medication in the seizure class increase their burning pain?

[hannah1234]

I havent, but definately do your research and if it is making your pain way worse I wouldnt stay on it. I would be terrified to stay on it especially if the rsd spread and your mind is racing. it might just be that med, but maybe another one in that class will work for you. I take topomax (I take brand name because generic gives me headaches) and it works great. Alot of people with RSD take it and it works out well for a drug in the seizure med class. Good luck!

[lovefamilypets]

Originally Posted by hannah1234

I havent, but definately do your research and if it is making your pain way worse I wouldnt stay on it. I would be terrified to stay on it especially if the rsd spread and your mind is racing. it might just be that med, but maybe another one in that class will work for you. I take topomax (I take brand name because generic gives me headaches) and it works great. Alot of people with RSD take it and it works out well for a drug in the seizure med class. Good luck!

Thanks Hannah for your help! I keep hoping it is the medication and not my RSD spreading on its own. I've decreased the dose, but no improvement so far.
Thanks for the suggestion of Topomax. I will ask my PM about it. THanks again!

[bent98]

have you had any improvements?

[kathy d]

Hi Lovefamilypets,
Yes, I have had the same problem with EVERY pill I take. It started in Jan 2011 (after years of heavy pain meds AND after a fall in ICU during ketamine which nearly killed me). After the fall, I felt as though if I took another pill my body was going to shut down so I tried to decrease all meds. Of course going cold turkey off fentanyl (which are some rsd docs withdrawl methods:.( but felt inhumane to me).

About two months later, I noticed that no matter what pill I took my burning pain increased for hours. Whereas before taking the pill I did not have that burning pain...then took the pill and got it immediately. So, I weaned myself (after over five years of pain meds) off all pain meds. I have had iv's of natural vitamins for a year now and I believe it helped me to get off the meds. I feel the burning pain is God's way of telling me "Get off that stuff!"

I have noticed that any pill I put in my mouth no matter what it is from a half of Tylenol to motrin to melatonin it will increase the burning pain in my body. It is strange but so is rsd lol. I took it as my body could no longer handle the pain meds and other meds and I needed to get off as much as I could. I only take a half muscle relaxer, one melatonin, and 1/2 wellbutrin (soon to be off completely) and it is bedtime. I have been getting average 6-7 hours of restful sleep a night whereas before this I barely slept and nothing worked to help me sleep. I think I am on to something with the natural vitamins. It is the only thing that has helped my body. So I try my darndest not to take anything until bedtime and I exercise alot more now too. I started out doing ankle pumps and increased to leg lifts in bed, to exercise bike and now am walking much better. It takes a long time but have hope and you can do anything you want to. Let us know how you make out at the doctors.
kathy d

[margarsa]

I think every med has a positive and neg value. The only way to tell is to document how you are feeling, discuss with your doctor. What works well for many people may not for you, however you won't know until you try. also when ever a med is increased or decreased document it and how you are feeling.
My daughter has been on oral lidocaine for a year , got bad, lidocaine increased, burning pain got worst, lidocaine tapered off for relief. This week, a IV lidocaine made her cry within 10 mins. So my point is even a med that has done well for you may not later, then combining with other meds changes how you feel also. Try to change, add, subtract any meds one at a time, document it carefully, so you can refer back to your notes when you talk to your doctors. Being in pain effects your memory very much.
Don 't accept a doctors comment, well it shouldn't , I haven't heard of it, that doesn't make sense, your body, your reaction...
Remember the doctors themselves do not have personal experiences with pain such as people have on this forum, or they would be at home with their life crumbling apart.

[lovefamilypets]

Thank you everyone for sharing your personal experiences. It makes me feel like I am not crazy. I went ahead and got off the lamictal against my doctor's wishes. I actually moved so I had to stop seeing her anyways, but I think it was good. She was becoming very frustrated with my lack of response to her treatment protocol and she had stopped listening to my concerns.
While my new symptoms have not gone away after stopping the Lamictal, they are less frequent now and I'm sleeping better off the medication than I was on it. I really think the medication was making things worse.
I still haven't found a medication that helps, but I'll keep trying.

[Sonny1]

I have not experienced the pill taking and burning pain but I do try to take as little med's as possible also. I just wanted to add to Kathy's comments about vitamins. I just recently and I mean recently, like 2 weeks ago started taking B12 daily, D3 weekly and just 2 days ago started taking Borage oil pill supplements. They are part of the Omega 6 family which we do not usually get enough of anyways. "They say" studies have shown it to help folks with arthritis, nerve damage and inflamation. It also has GLA in it Gamma Linoliec Acid which I think is the inflammatory reducer, not sure there. So for more natural ways to help the body, I am all for it, if later on I need pain med's then I will ask for them, but for now...I think I will keep trying this way, I am 41 years old.

I do take Topomax though but nothing else for the CRPS. I do have a tens unit and lidocaine patches and get nerve blocks every few months (which I am trying to taper off of also) I am also afraid that all of these things can cause spread or additional problems which I am not equipped to handle right now. Having CRPS in both hands/wrists is enough for me, especially with both thumbs being fused in the straight position.

Listen to your body and your mind. Do not let these doctors fear you into their beliefs. So what they never heard of that, it doesn't mean it can't happen. I always tell my Pain doctor "I am the exception to the rule, you cannot classify me with others." Insist on your treatment plan, choices and med's. I go to my doctors with my own research and information and tell her what I think I may want to try and we discuss it. She is impressed with my involvment in my treatment, although I think she gets mad sometimes because I don't agree with her all of the time and I speak my mind. WE have to look out for ourselves. Nobody else will. The doctors have a bottom line, making $$$$ and pushing certain medications for the pharmaceutical companies they are working with. Don't be afraid to speak up for yourself.

My Uncle in Florida just almost died because his doctor (old dr. now) had him on a wrong medication and nobody wanted to question anything...well my cousin flfew in from wherever, got a second opinion and my uncle came off the medication and out of hospice 2 days later....He would have died. He was in hospice being tube fed and on morphine waiting to die all because of a medication.

[nw31705]

Hello Hannah, this is the first I have heard concerning Topamax and RSD. I am new to neurotalk and haven't read all there is to read. I am not new to RSD or Topamax though. I was diagnosed with RSD maybe a little over three years ago, but I was already taking Topamax for my history of chronic migraines. I do however have a question; have you experienced and hair loss while taking Topamax. Also I haven't notice any difference in my pain since my dosage has been increased.