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Lacosomide: Experimental Treatment for Tardive Dyskinesia Proving Effective
Jun 13, 2009 04:24PM
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I am at an interesting juncture here. I believe I am the first person to be prescribed Lacosomide (a recently FDA approved anti-convulsant) for tardive dyskinesia. The previous studies were tentative findings on rats. However, unlike the glycine which is still in Phase II FDA study, Lacosomide is FDA approved. However, this is the first day on it and my neurologist is a movement disorders specialist will have to do a final evaluation as well to determine if it works and how. The fact that it has a mitigating effect on tardive dystonia is concordant with the studies. The fact that I slept better and it worked on what was obviously rapid cycling would not be a surprise as many mood stabilizers (Lamictal, Keppra, Tegretol, Trileptal, etc.) were originally developed as anti convulsants. The fact that it has a mitigating effect on the dissociation/dysphoric mania of what they are tentatively terming tardive dysphrenia as well as the loss of cognition from what they are terming tardive dysmentia does point towards future recovery for others. They will have to evaluate me and understand it and then incorporate it in the case study to have a fuller understanding though and then that could be seen how it could apply to others. And the reason the picture is "blank" is because with the synapses starting to work together my reality testing is clear but in ways that had been disrupted neurologically previously. I have some understading of what is going on but its up to the researchers to fill in the blanks as to what happenned exactly. And then see how this picture could be used to help others fine tune things...
Good Luck!
Thanks. The truth is we all feel that way. I am the first person Lacosomide has been used to treat tardive dyskinesia in. My psychiatrist agreed that it appears to have some mood stabilization properties but that's not what its for. He was interested in that it treated the unknown forms of tardive dyskinesia (tardive psychosis, tardive dysphrenia, tardive dysmentia) and is considering that as those criteria are still not identified yet overall. I will be seeing my neurologist who is a movement disorders specialist next week and if he determines (as one can observe and I feel through the physical loss of muscle tension) that it is helping on dystonic spasms, they at that point would be quite interested in writing up the case study as glycine has been used to treat schizophrenia in Phase II FDA study studies (albeit with a conventional antipsychotic, I am the first to recover with it on its own) but Lacosomide has only been used in animal model studies. Thus it would literally be its first use for tardive. Everyone is very interested and if the study helps pinpoint how a new treatment modality for schizophrenia works and a new treatment for tardive dyskinesia completely I'd say science and I have met each other and we are working together at the same pace and the ultimate goal is to give my recovery back to others, both mental and neurological which is what we all want..
glad ur seeing some positive effects!
I have a question, is tardive dyskinesia and dystonia the same disease?
I have a friend wth dystonia....but it wl be yrs down the road b4 getting approval in Canada, we r always so much further behind in meds.
thx for all the updates
I have a question, is tardive dyskinesia and dystonia the same disease?
I have a friend wth dystonia....but it wl be yrs down the road b4 getting approval in Canada, we r always so much further behind in meds.
thx for all the updates
Dystonia is genetic. Tardive dyskinesia is a long term medication side effect. For more information google "Patient Education Tardive Dyskinesia" and as the site itself says "some of these medications may be medically neccessary". The current antipsychotics have that potential but the new antipsychotics in development cannot cause it. People with dystonia are more at risk for acquiring tardive dyskinesia. In my case Lamictal worsened dystonia into tardive dyskinesia but for people without dystonia there are no concerns from Lamictal. However, at the time I was not diagnosed with dystonia nor was this potential statistically rare adverse side effect known. For people on any medication that can cause tardive dyskinesia in more than a statistically rare potential (such as current antipsychotics with the exception of Clozaril) a person's psychiatrist should do a movement disorders test at frequent intervals to check to make sure it is not occuring. If it does they can be changed to a medication that can't cause it. That's why I was put on Clozaril but ended up in the glycine study because I could not tolerate Clozaril (which for some people is quite helpful). As for the idea that tardive dyskinesia could affect the mental processees that is under study itself and aside from a few tentative clinical findings the search phrases call up a lot of anti-psychiatry blatant misinformation. The research done on me is within standard clinical findings and my hopes are after its concluded they can identify, treat and prevent it. As things progress I'll keep people updated..
I'm happy that it is working so far. Hope you have continued success with it. I was watching a TV show about dystonia and the treatment of vagus nerve stimulation. Go Ilad!!
Thanks. The Lacosomide is clearly helping as yesterday I went with a family member to a French restaurant as kind of a celeberation because due to the mitigation of dysphagic choking spasms (part of dystonia) I can eat normally. That came at the right time because next week I'll be seeing the dentist. The day after I am seeing my neurologist who is a movement disorders specialist and he can see what he finds in me but my psychopharmocologist already found good results. After that if I can stay on the Lacosomide (which seems more than likely, the only side effect I'm getting is some minor dizziness and sedation but I can sleep it off and with its help on dystonic spasms I am finally starting to sleep more normally) they may go ahead and write up the case study as I'm the first person (literally) for this to be used on tardive dyskinesia. As for what happens after that with the usage of Lacosomide and further clinical understandings of tardive psychosis, tardive dysphrenia and tardive dysmentia I may not be aware of all of it and some of what I am made aware I must keep confidential but it will be nice to those misunderstood conditions returned back to treatment professionals rather than people who misuse them as slogans to be against treatment and now they are through me identifying some viable treatments and a new generation of antipsychotics that more than likely will never cause them again. Life is adjusting for me and I think of other people's future recoveries as well and on all fronts the news is positive.
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