ranman
Junior Member
Posts: 66
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Post by ranman on Sept 15, 2006 14:45:46 GMT -5
NOTE: This is just an observation, a tidbit of information that I thought I'd pass along. Recently, I had my 6 month neurological check up. After being examined first by the intern (it's a teaching hospital) and then by the Doctor, we were discussing my poor coordination and gait. Well, I was surprised at his reply. He told me that if I were to go off all my meds. I would still have the same balance and coordination problems because the "long term use" of the dilantin and pheonobarb, it has caused permanent neurological damage. I asked him if this process could be reversed and he said no. When I was first put on dilantin 28 yrs ago, there was very little known about it's long term effects. It's too late in my life to change meds (and risk lower brain stem damage) or go off them completely to stop it from getting any worse and risk a seizure. Since the seizures are under control and the meds don't interfere with the other meds that I take for my Colitis, I chose to stick with this rather than risk other problems.
Randy
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Post by Mandi on Sept 15, 2006 16:01:29 GMT -5
Randy... This is EXACTLY why I chose to come off the Dilantin. I'm so sorry you don't have any options, but glad you have your seizures under control. I guess we all have those hard choices to make. I wish it were different for you.
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Post by fourstar on Sept 15, 2006 17:36:53 GMT -5
Randy I have been on mysoline(mysoline turns into pheno in the body) or pheno over 25 yrs and as I have reduced the mysoline my coordination,gait and perception have improved big time. For example perception I am more aware of traffic and when my husband is driving how close the other car is etc. gait and coordination I can do one legged yoga. My balance has improved so much ,its amazing. Is it the homepathy meds? Or is it just going off the meds? Maybe a combo? I did need accupuncture to help with the withdrawel of mysoline ( i had the shakes,chills, and my nerves were raw) Every time I went off a med I used accupucnture to help with withdrawel and to stop the breakthru szs.
fourstar
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