This applies to antipsychotics only but I know they are often used to treat bpd. I have posted how I have recovered with glycine, a glutamate antagonist, a new class of antipsychotic that is in development in Phase II FDA study. I ended up on this medication because I was unable to tolerate all currently available antipsychotics and have tardive dyskinesia. I am in no manner making reccomendations to change treatments but I am trying to get a feel for how many people have either not recovered with all currently available antipsychotics (for example you still have psychotic thoughts) or have severe long term disabilities (tardive dyskinesia, diabetes) or can't tolerate antipsychotics because of side effects (akathesia or dystonia which are short term movement disoders, cognitive side effects, weight gain). My specific goal that is advocating within the system and approved by my provider as well as the various researchers and officials I have spoken with is to have new anti-psychotics fast tracked through the studies. But I want to show there is a pressing need. And I believe there is. But more specifics always help than statistics. So if you have these issues, it would help not only you but consumer advocacy as a whole to let me know. I'll put some common problems people run into and you can add another if they don't cover it.
1. Tried All Antipsychotics but They Don't Work for Me
2. Have Tardive Dyskinesia
3. Have Medication Induced Diabetes
4. Short Term Side Effects/Akathesia/Weight Gain/Cognitive Blunting/Extreme Sedation
And here's the update on all forums where a person is taking an antipsychotic. I will post what information I was authorized to by my provider:
This information that is new to medical science but is clinically confirmed. My psychopharmocologist spoke to a provider agency, a well known one although I cannot state their name for confidentiality purposes. It confirmed that I had recovered with glycine as a primary antipsychotic although in studies it is still used as an adjunct. More importantly this agency stated that among their discussions would be to add glycine as a suggested adjunct for providers. Therefore, people should continue with standard treatment and in no cases obtain it on their own but it will be public knowledge that glycine in pure powdered format can be added to a primary antipsychotic.
As for the research all the provider agencies indicated they would like to see research done on only new modalities of treatment, including glutamate antagonists but that is the perogative of the pharmaceutical industry. I personally believe that in a business sense as the study on myself confirms a clear recovery and the Eli Lilly drug LY2140023 advances ahead that other companies will want to start research on a glutamate antagonist as when they are approved they will certainly be an advance in treatment.
The study on myself will not be finalized for publication until the remaining neurological disability is specifically diagnosed. They have not ruled out "tardive psychosis" as a criteria in me and they have ruled out all common neurological disabilities but they have to go through the rest. It is indeed rare for tardive dyskinesia to get this advanced and the fact that as a child I had abnormal movements (although a normal CT scan) and nystagmus may have made me more suspectable. Tardive dyskinesia occurs at the rate of 5% per person per year with the typicals and with the atypicals, as studies show it actually varies from 1% to 2.5% per person per year. I will be provided with specific studies to cite next time. Trazadone is relatively low risk but can cause it. There have been reports of temporary movement disorders such as akathesia from SSRI's and this is relatively common but no reports of tardive dyskinesia. There was one confirmed report of Lamictal induced temporary movement disorders online and I did experience extra pyramidal side effects from it which was reported to the FDA but it is a statistical rarity. This information is what my psychopharmocologist obtained from psychiatric journals that may not be easily accessible to someone who is not a provider online but I will be able to cite them next time.
We well understand that the remaining psychosis I have is neurological in origin and being mitigated by anti-Parkinsonian agents (Zofran, Tenex, rhodiola) but the movement disorders specialist has to continue some more tests. The final case study of which I will be a co-author will contain my recovery from glycine as a novel antipsychotic and should it be found the confirmation in myself of the hypothetical criteria of tardive psychosis to understand how to identify and treat it and when it is published I will make it available as for people to read as I stated.
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