Oh (((Ellie))) sorry to hear about the problems withthe meds. From my son's experience, I can only say that he ended up on Dilantin (a hefty dose though), and it made a big difference for him. Getting enough sodium was a problem, I guess some folks take salt pills. And also calcium. I know they mess with a persons drivers license every time they switch meds, but if you are really having trouble, maybe you will have to switch eventually. I hope you can stay on the one that works best the longest. I don't knowwhat will happen if my son goes off Dilantin. It has been the first med to not mess with his moods and make him feel crummy and wreck his memory, though he still has the occasional bit of trouble, even learning todeal with that has been hard. Since some of the newer drugs have psychiatric components to them, they really altered hs personality and he wasn't happy about it. And each med works so differently on each person, a drug can be great for one person and totally awful for another person. Epilepsy is really hard to manage in so many ways I've learned.
Yeah, maybe the drugs did sort of weaken you in some ways physically that made the lupus come out. You know they alter the chemistry in your body, and that can affect lots of things. Docs talk alot about oxidative stress, so I try to eat foods and drink drinks with antioxidants when I can. Idon't know if it helps with lupus, but I know that oxidative stress, caused by meds, diet or other things can trigger some disease conditions to become active and to get worse.
My son got Reynauds when he took his first epilepsy med, Depakote, and got other lupus like symptoms and developed a heart problem and had to go off it and on to trileptal, which he becme progresively unhappy and angry on, then they finaly put him on Dilantin,and he got his whole life back and I got my son back that seemed lost to me for about four years, from back when his epilepsy got bad andwe discovered it.
My son had to drink alot of gatorade, that has alot of sodium and electrolytes in it. When he didn't have enough salt, his memory was real bad and his balance was like adrunken person as was his speech, and he was accused of alot of things by people. He had a hard time keeping the salt up. I dont know if that is an issue with the tegretol. Its easy to forget, too. Especially when you are already having memory problems.
Well, Iwill pray for you and wish you the best. Kudos to you for being so strong and i hope your lupus is mild and possibly drug induced so a switch might fix it. Epilepsy is bad enough. If you feel like you are going to black out or do black out and have a horrible impending doom feeling at the same time, be sure to get to the doc ASAP, my son had that from Depakote and it was vagus nerve problems with his heart and he was sort o slightly dying everynight and if it got worse it would have causedhim to go into major heart failure. So be careful.
From what my son says, dizziness, balance issues, and weird feelings in the head are prettymuch standard for lots of the meds and just somethng he puts up with, like you.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids