Saturday, April 4, 2020

Comments by npeden

Showing 7 of 7 comments.

  • streetphotobeing, I have taken p5p for years for my genetics. I am meeting with a new psych on March 17th and yes to taper after 13 years may not be possible given my other illnesses. I regret posting at a time of high anxiety.

    I would rather mention that the Suitcase Stories have me looking again at my grief of committing my mom 3 times then having Ronald Reagan close all hospitals in CA. I personally helped her stay housed. First suggesting she work in motels as a night agent where she would get housing and then when she got dx’ed throat cancer and heart disease (MTHFR and smoking) and fired, we moved her several times and were finally blessed to get her into one of the first hospice hospitals in CA, in Carmel Valley. A woman of immense trauma died with dignity due to community support. This has brought up huge memories for me personally. My grandma, her mom, died in an asylum with a dx of “melancholia”…all consistent with MTHFR (and more) homozygous. A friend with an ancestry account helped me find her, I pray as she came from a well to do family she did not become a Suitcase.

  • Thanks, I know a lot of this. Psychs are closing practices in New Mexico and I lost my prescriber. That is what I meant by dropping like flies.

    Therapists are contacting state boards as so many patients are being forced. Pretty ironic that you seem to accept disability as ok. I have a friend who is a disability lawyer. It is very hard to get.

    It is not just glutamate but homocysteine moving quickly from high to low under stress. Homocystinuria. COMT Val Met & COMT H62H…very rare combination and causes panic attacks. I am hoping to get into a metabolic doctor so insurance will cover.

    Ashton did not work for me at all. I am a part of The Withdrawl Project and Benzo Buddies.

    I have been on 2 mg clonazepam (not mentioned in your taper strips btw) for 13 years w no issues except when I was forced cold turkey by a crazy provider.

    I tapered myself from 6 mg AND when dx’ed MTHFR c677t I got off all the psych drugs that were killing me, easily. I have had NO urge to increase. I take it a bedtime w magnesium L threonate.

    I am speaking w a taper specialist on Friday who is licensed in 4 states.

    Thanks for your very good info. BTW I have changed my life even while going through great trauma w therapy & meditation. I help others w depression & PTSD.

    I am more concerned about the homocysteine at the moment as that can cause seizures and heart attacks.

    Again thank you. Good info. I have helped 46k online in natural health; they loved my methods, based on my doctoral training in transformative learning & change.

    Low stress, love & community are key in my life. So I trust the universe to lead me. Thanks again. You are a great resource as I hope I am.

  • My edit did not keep. I am TERRIFIED of being forced to taper at my age and 13 years of clonazpam. I got off all other drugs they tried me on easily but my neuros are full of glutamate and it takes a tremendous effort to relax and transform all to GABA.

    So if anyone has any ideas how I can get a compassionate prescriber in New Mexico let me know. They have criminalized us; there are 500 mental health beds and literally thousands in jail. My therapist who I have been training is very concerned for me and seizures and she has other patients being forced and threatened. I have a very compassionate pharmacist and she is concerned. My therapist says many in the SW world are very concerned and it is being openly discussed. So some rays of hope and I need to find a prescriber in the next 3 mos.

    I have little income and support. Thanks so very much for any help.

  • Thanks for this. I work in epigenetics and have MTHFR and a rare form of COMT++ that causes my homocysteine to move hi and low, causing panic attacks.

    As I was dx’ed due to drugs that nearly killed me I bet my CYP450 is mutated.

    The only drug I have been on as I have had huge trauma is clonazepam 2mg at bedtime. I have out of the COMT++ be diagnosed with homocystinuria and it is in genetic reports and includes seizures yet I am being told I need to taper.

    I am doing all I can to now get to a metabolic MD (they work with genetics a lot) which insurance will cover AND to get a compassionate doc that will NOT force me to taper. I have been on this or 13 years. It would take forever and I am now 70.

    Thanks for these tips. BTW COMT++ means no methyl groups which is what runs methylation and is why the homocysteine bounces easily. Thank god B3 helps the panic attacks BUT it RAISES homocysteine and Medicare does NOT pay for homocysteine as they don’t believe b12 and folate are effective. Millions with MTHFR forms would differ.

    Again many thanks for bringing this up.

  • We live in revolutionary and exciting times. I have several genetic disorders and cannot be tapered off clonazepam because of the potential of seizures and where I live New Mexico psychiatrists are dropping like flies. Pray, I find an open-minded prescriber. My pharmacist has been a guardian angel when an ignorant prescriber did not leave refills and I had to go cold turkey and go to the ER.

    I think first of Anna O who was abused by Freud’s buddy Brauer who recovered her life by becoming socially active in Germany in WW2: https://en.wikipedia.org/wiki/Anna_O.

    Secondly, I think of Thomas Zasz who wrote the Myth of Mental Illness. https://en.wikipedia.org/wiki/Thomas_Szasz

    And thirdly I bow deeply to my own mentor, John Heron, who proposed peer to peer co-counseling methods.

    My own doctoral work focused on his methods and my unfinished doctorate in Transformative Learning and Change I have used to help many promotes and focuses on peer to peer to peer methods of WELLNESS. When I took over a natural health group dealing with my genetic/epigenetic issues, we grew from 44k to over 46k in 6 months. Participants loved it.

    We are hungry for love, connection, hope, dignity especially in managing trauma. Beautiful podcast. I am getting ready to put together some articles on misdiagnosis when the physical presentation looks mental and is really physical. See the woman with her Brain on Fire on TED and in books.

  • Good article; agree with much. I “have” cptsd from severe life long abuse because I am intelligent and unique in my views . Big fan of the old Thomas Szasz theories, that labeling is societies way of control (see wikipedia, who i do not trust as I believe it is right and full now of disinfo on many topics https://en.wikipedia.org/wiki/Thomas_Szasz)

    Also believe ala the participatory paradigm ( seehuman-inquiry,com) that all re;relationship is sacred.John Heron was a beloved mentor for many years btw.

    Also consider Bessel von der Kolk’s The Body Reveals in which he apologizes for years spent medicating clients.

    I am privileged/blessed to have a coach who gets cptsd, the underlying lack of love and as this article from Harvard suggests, the lack of empathy, http://www.health.harvard.edu/blog/greater-self-acceptance-improves-emotional-well-201605169546?utm_source=delivra&utm_medium=email&utm_campaign=BF20160516-PosPsych&mid=12175056&ml=149764

    I am homeless now but creativity and self esteem actually rising. See 2 posts from my renewed blog. Nutrition, loving relationships, and no psych drugs have transformed me. http://www.livedlearning.net/spirit-shop/ and http://www.livedlearning.net/about-me-alive-and-well/

    Good luck in furthering you work. Yes, love, especially for those that seem “different” is the correct “treatment”. Bravo!