anone else suffer from Tardive Dyskinesia?

[Bunkyburman]

I am suffering bad and need some advice

[ILADVOCATE]

   Physically due to the severity of  the tardive I have I require a wide variety of accommodations. Generally the need for accommodations and the extent of them depends on how tardive effects a person after treatment. Mentallly I just remind myself that this is an adverse side effect from takng medication as prescribed and try to avoid reacting to the way people sometimes look at me. As well if I have any mental changes due to the pain and/or severity of the convulsions I discuss this with my pscychiatrist and neurologist who both follow up with this and confer with each other. All this improved after treatment.
  One important thing to do is to wear an i.d. device such as a pendant that says you have tardive dyskinesia so if ever you need help doctors know how to follow up. I also have specific doctor's letter with me that have the specifics of what has been diagnosed and my psychiatrist's and neurologists contact information.

[Bunkyburman]

thank you - I am diagnosed and have another appointment on Wednesday and will discuss with her.  How do you mentally and physically handle your situation?

[ILADVOCATE]

  Yes I have advanced tardive dystonia which is a more severe version of tardive dyskinesia. If you have been diagnosed with tardive dyskinesia the first thing to do is have your psychiatrist refer you to a neurologst who is a movement disorders specialist. They could further treat it. There generally is a movement disorders specialist clinic at most major hospitals. For more specific information about treatments google "patient educaton tardive dyskinesia
(note as the site itself says "some of these medications can be medically neccessary") and there is a clinically detailed web page on Emedicine you could discuss with a neurologist
   I am on more experimental treatments as I did not respond to more standard treatments but there is are
increasing number of medications to treat it. Also there is a
need to determine which medication caused it and if at all possible replace it with another medication that doesnt within the neurologist's
clinical discretion. As regards antipschotics the only avaiable opton right now until newer treatment modalities complete FDA studies is Clozaril which for some people is a helpful option and would be used more often if it were not for its side effect profile. Whatever neurologist follows up on this can provide you with more specific follow up informaton