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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#1
Bear with me, please. I've been sick 45 years since 13 (when I started dissociating and developed mood disorder/acute anxiety and stopped talking because I was very disconnected from myself) and have never felt like myself every since. I've done everything in my power and nothing has helped: SOMEHOW I stayed active in 20's/30's and it made things 10 times worse and ended up with 7 nervous breakdowns in early 90's and in the hospital taking horrible medications, getting 17 ECT treatments (which destroyed me - I spent 2 yrs in bed), going on disability and into a halfway house (which was positively traumatic!). Taken 40-50 medications, been hospitalized 28 times, ECT 5 times all with no relief (and have PTSD from the hospital from abuse/being ignored), seen tons of therapists which were a complete joke, exercised most of my life which never helped. Been extremely sick since starting prozac 6 mths ago - gave me insomnia and all symptoms are out of control - mood is torture, energy is non-existent, can't rest or relax, irritable, can't do anything except lie in bed, etc. There's nothing good about my days or nights. Dr stopped prozac 3 mths ago and nothing has changed. He gave me tests in Dec. and adrenal/testosterone levels were high and he said I needed to see an endocrinologist badly, he said he can't help me anymore and he's ignored me the last 6 wks (and, believe it nor not, he's been one of the best Drs I've seen since 1992!!!). Finally saw an Endo today after waiting 4 mths and she didn't have ANY answers for me. She asked me if I would consider another Psychiatrist and taking more meds and I said "No!". All Drs I've seen between Philadelphia-Baltimore have been totally incompetent. All they've done is experiment with me the last 35 yrs and I can't take it anymore! Tried to kill myself 4 mths ago and it didn't work and made me so frustrated and didn't tell anyone because I never want to go back to a psych ward or ER again! I don't know what kind of feedback I'm looking for here. I just wrote this because I needed to get this off my chest.
__________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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ArmorPlate108, Discombobulated, DocJohn, eskielover, LadyShadow, nonightowl, Tart Cherry Jam, TheGal, unaluna
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Crone
Member Since May 2010
Location: Some where between my inner mind and the solar system.
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#2
Have you looked into dialectal behavior therapy
__________________ Nammu …Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. …... Desiderata Max Ehrmann |
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Poohbah
Member Since Aug 2022
Location: The House
Posts: 1,198
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#3
I am so sorry for your suffering.
(((( cool09 )))) Though it's almost impossible to engage in self-care activities when you're so low, do try. I would focus on diet and building your microbiome, focus on gut health. The Edgar Cayce (pr. Cay-cee) 3-day apple detox has helped me clear brain fog as well as cure severe urticaria when no one (the medical community) could help me. A word of caution, make sure it's safe for you to do. Here are some books/resources (some might be available in audiobook/CD format) or clips on YouTube: Books by Udo Erasmus Dr. David Permutter book "Grain Brain". Forks Over Knives documentary Dr. Joan Borysenko book "The Plant Plus Diet" Dr. Andrew Weil Edgar Cayce You might want to look into getting a doc that focuses on integrative medecine, also functional medecine. Look at reducing inflammation... there's a blood test you can take to test your levels... I forget what it's called... Holistic therapies might also help: hypnosis, acupunture, massage, tai-chi and qi-gong, a good dietician who knows about microbiome & gut health etc. Medicine-wise - have you heard of ketamine? or tried it? Try your library for books; otherwise, you can buy them secondhand at AbeBooks | Shop for Books, Art & Collectibles |
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ArmorPlate108, DeeeSchmeee68
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Member Since Dec 2022
Location: New York State
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#4
@TheGal has some really good ideas.
I would add that when I was in a very similar situation, I started listening to calming music and tones (7.83hz). YouTube has a great variety to search up. Try and be easy on yourself. Are you able to check in regularly here? People are so supportive Sent from my SM-A146U using Tapatalk |
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TheGal
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TheGal
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#5
Quote:
What's integrative medicine? I tried ketamine for 2 weeks and it made me suicidal for some reason, I don't know why (and not sure if it helped at all.) I think when I ran out I became very desperate and I craved it for some reason and called the Dr and told him I was suicidal and he never called me back. This particular Dr had worked at a prestigious hospital (Institute of PA, Philly - 1st Psych Hospital in the USA which is where I spent all my time in early 90's). The staff there ignored me every inpatient stay. This Dr. diagnosed me as bipolar because he said I have agitated depression (which is in the bipolar spectrum - and I've never been manic) and he put me on every mood stabilizer for 3 years and nothing helped. He didn't speak to me at all (all he did was push pills) and he got mad at me when I had horrific side effects on Depakote. I was on lithium for 15 yrs and didn't do a thing and I begged every Dr to stop it and no one would do it. Somehow I finally stopped it. I used to get very agitated and it came out of nowhere! and would last for hrs, days, weeks. I had to avoid everything because everything made me super irritable. I lived in 7 apartments and couldn't take the noise from neighbors and almost threatened a neighbor. This Dr listed "Psychotherapy" on his card but he never once mentioned therapy. A psychologist gave me a test few yrs ago and summary (which was 6 pages long) said I have avoidant and schizoid personality disorders and no Dr has ever wanted to discuss it. She was very impersonal on the computer and the test questions were extremely vague. The questions were like "I spend most of my day angry - Yes or No?". I don't know how she reached her conclusions. The summary just listed my problems like "I ruin my attempts of getting better due to negative thoughts and self-doubt and don't want to be independent at all" and she didn't analyze what the cause of my problems were. Guess what? When you dissociate and have a mood disorder/anxiety when you're young you end up with negative thoughts and self-doubt! Surprise! I've done cognitive therapy and it doesn't help. A lousy Resident at Hopkins in 2017 diagnosed me with Asberger's and didn't tell me how to get help and every Dr I've brought it up with ignores me (and a Dr at Sheppard Pratt yelled at me when I talked about it). The wards at Johns Hopkins are set up extremely poorly - either the residents do all the work and they don't know what they're doing or they give you an Associate Psychiatrist and change Drs on you EVERY 2 wks so you don't get any consistent care at all! On one ward you would see a disgruntled Senior Dr at 730AM every morning for 5 minutes and he would ask the same 4 questions every day: "How'd you sleep?", "How's your appetite?", "Do you think life is worth living?" and some other stupid question and he didn't want to know anything about my past diagnoses, medications, what brought you into the hospital, etc. Then he would say "Go get your breakfast". After 4 wks I told him "I can't stand it here!" and he said "Well, we'll discharge you" and he ended it with "It's going to take a lot for you to make it in this World...". Sorry for all the complaining but I don't know what to do anymore! Music has been the only thing I've enjoyed the last 45 years - I played electric/classical guitar. But my interest in it waxes and wanes the last 10 years. My anhedonia has been very bad. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Discombobulated, nonightowl
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Magnate
Member Since Mar 2021
Location: California
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#6
You describe so much mistreatment and lack of care, it is awful. What you haven't mentioned is ever having a therapist who specializes in dissociative disorders. They are so hard to treat and most psychologists are not trained to treat them, but there are a few who have developed this expertise. There is a society of such psychologists. I saw their website years ago. Do you know which one I am talking about? If not, I will do some web searches to see if the society still exists. Since you in Philly, a large metro, there must be some practioners in your area.
I think the most you need know is a therapist for the long haul. Someone very consistent who will invest in learning about you and building a relationship with you. Someone who will be like a rock. __________________ Bipolar I w/psychotic features Last inpatient stay in 2018 Geodon 40 mg Seroquel 75 mg Gabapentin 1200 mg+Vitamin B-complex (against extrapyramidal side effects) Long term side effects from medications, some of them discontinued: - hypothyroidism - obesity BMI ~ 38 |
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cool09
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Elder Harridan x-hankster
Member Since Jun 2011
Location: Milan/Michigan
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#7
I love classical guitar.
Often i remind myself that VanGogh was miserable and unappreciated by the public in his lifetime. But that was also part of his legacy to the world, however inadvertent. |
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Tart Cherry Jam
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cool09, Tart Cherry Jam
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#8
Quote:
I saw one of the top Psychiatrists at Johns Hopkins a few years ago and I told him that dissociation and a severe mood disorder in my teens damaged my personality. I told him it took away every quality I had before age 13. He was completely dumbfounded and didn't understand! My experience is that the mental health system doesn't work at all! I haven't gotten anywhere with any professional the last 35 years! All they want to do is experiment with me and give me more ECT which doesn't do a thing! My present Dr. (who is pretty bright but very young and has shown some interest in me) gave me some therapy months ago and I told him I've been trying to relearn how to relate and connect with people the last 45 years and he raised his voice at me and said I have a "loop" in my head and that I have to stop! And he told me that I'm trying too hard and he doesn't want me to do anything. I don't live near Philly. I live in a rural area in northern MD and I've seen every psychiatrist in this area and they are all horrible! And I've traveled to Philly and Baltimore to see psychiatrists and they were all lousy! The last 2 therapists I've seen didn't say a thing to me! And another therapist wouldn't let me talk so I stopped going to see her! And another crazy therapist wanted to send me to New Orleans to a hospital for 30 days for some reason! I told a young therapist at Sheppard Pratt Hospital that I didn't want to do anything and she said "I can't help you". That was my problem that I needed help with! Then I told her I didn't want to live and she didn't say a thing so I never went back to her! Quote:
__________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Crone
Member Since May 2010
Location: Some where between my inner mind and the solar system.
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#9
I’d look up and read about all or nothing thinking.
__________________ Nammu …Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. …... Desiderata Max Ehrmann |
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Magnate
Member Since Mar 2021
Location: California
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#10
If you live in a rural area, then it would be hard to find a dissociation therapist. Here is the therapist search tool Find A Therapist - International Society for the Study of Trauma and Dissociation
__________________ Bipolar I w/psychotic features Last inpatient stay in 2018 Geodon 40 mg Seroquel 75 mg Gabapentin 1200 mg+Vitamin B-complex (against extrapyramidal side effects) Long term side effects from medications, some of them discontinued: - hypothyroidism - obesity BMI ~ 38 |
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cool09
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Poohbah
Member Since Aug 2022
Location: The House
Posts: 1,198
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#11
Have you tried white noise to get through the difficult thoughts?
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#12
Quote:
Since I started prozac 8 mths ago my sleep has been incredibly irritable. I go from one bad dream to the next all night (or all day for that matter - my nights and days are completely screwed up since starting prozac - I've been getting up between 12AM-4AM and getting my meals) and I wake up very irritable, totally exhausted and it takes me hrs to get out of bed (if I get out of bed at all). I was sick before prozac but not this sick. At least my sleep was peaceful the last 2 years (I mean I woke up in a horrible mood which lasted all morning long). Dr stopped prozac 4 mths ago and none of my symptoms have changed! Saw my Dr today and he said he can't do anything. He says he has to wait for my endocrinology tests in 3 wks before he can decide what to do and I told him I can't wait that long and that the endocrinologist wasn't concerned about me at all last week. I've been this sick many times throughout my life: 1990--1996, 2017-2018, 2022, etc. In 1993 a year after ECT I spent 3 months in the hospital in bed, the staff ignored me, the decent Dr that I had left the hospital and I was given a Chinese resident who yelled at me the 3rd time I saw him because I told him I was anxious: He threw his book down and yelled "Why do you always say you're anxious???" and then put me on Stelazine which was absolutely horrific. The head nurse yelled at me during that stay and said "I've done enough for you!". Thanks for some of the suggestions. I'm going to use that tool to try and find a decent therapist somehere. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Discombobulated
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Member Since Mar 2024
Location: In the southern United States
Posts: 346
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#13
Quote:
Bupropion is well, dicey but it works well with many in combination therapy. The sleep is particularly problematic as it would cut into your REM cycles and this will wreak havoc on making you more irritable. There is a blood pressure drug, called Prazosin that is good for controlling nightmares in many, though it did not work for me. Getting the sleep cycle back to normal is the first order of business to cut down on the agitation. If you find the right medication for that, and that lessens but still have a hard time sleeping. Medications such as Atarax (Hydroxyzine Hydrochloride), or a formulation of Ambien for you could be effective. The bad dreams will lower it effectiveness and those must be addressed first. I have written a billion scripts for this stuff, so talk to your doctor and also tell them to remove, "There is nothing I can do to help you", from their darn vocabulary. What did he do it medical school? Play tiddlywinks? These are only suggestions to talk with them about and yes there are things which may be done. I wish you well and good luck to you. |
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cool09, TheGal
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#14
Quote:
Like I said, I stopped prozac 4 mths ago and none of my symptoms have stopped. Psychiatrist gave me tests in Dec. and my adrenal levels and testosterone are high and he's putting all of his money on an endocrinologist at the moment. Ambien and Trazedone don't work. 20mg Ambien did work but Dr said he's not allowed to prescribe that much to me anymore. He's a very young british guy who's very bright but I think he has a short fuse. Resident at Johns Hopkins said I have Asberger's and he didn't explain it to me and he never told me how to get help. Finally, a different Hopkins resident sent me to the Autism Clinic at Hopkins and it was the most horrendous healthcare I've ever had (except for NM healthcare). Dr and therapist didn't want to know a thing about me. NeuroPsych test I took few yrs ago said I have avoidant and schizoid personality disorders and no professional wants to talk about it. I did take prazosin 4 mths ago because I had a couple horrible nightmares, woke up, didn't know where I was and couldn't calm down for 3 hrs. Stopped prazosin and I'm not having nightmares now. They are just very bad dreams and I worry like crazy in my sleep. I've exercised most of my life (swim, lift weights) and it never helped my mood or energy. I felt fantastic for a few hrs after I swam then I would go back to feeling horrible the rest of the day. Thank you very much for your input! I truly appreciate it! __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#15
I searched therapists in northern MD who specialize in dissociative disorders and found none. There are only a few in DE and most don't take Medicare and are only online therapists. (I'm 20 mi. from Wilmington DE.) I feel really hopeless.
I read about dissociative disorders and there are 4 stages of dissociation and I've had most of them: not identifying with oneself is what I've suffered with most of my life. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Member
Member Since Mar 2024
Location: In the southern United States
Posts: 346
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#16
Well cool, there are certain people that get a really stimulating effect from antidepressants and this can cause, agitation, relestleness that sort of thing. Whenever I had a patient for primary
care, who could/would not see a psychiatrist. I always used. combination therapy of a solid antidepressant and a low dose benzodiazepine. Those medications such as, Xanax, Valium, (I never prescribed ativan, it's worthless), Klonopin is also a good one. I typically got very good results using that therapeutic combination. This is just my opinion but M.D.s who will not prescribe those got their medical licenses out of a cracker jack box and are more concerned about liability than their patient's well being. They are only one level more addictive than tylenol, which is not. The bad side of them is that over a period of time it will take slowly more to reach the same effect, and one must be very careful in titrating off of them. These are my opinions and how I practiced, I am sure those who won't prescribe benzodiazepines would debate me ardently over it. It is perfectly fine for them to be wrong, when I could practice I was well respected and always had a full patient roster. Now, of course I cannot treat you over a website, so please discuss this with your healthcare professional. Another good drug for agitation in many is Atarax (Hydroxyzine Hydrochloride), it is simply an antihistamine it has a very strong sedating effect, it is sort of like benadryl on steroids. This therapy is dicey as a good percentage of the population actually become more agitated on it. My suggestion would be to read up on benzodiazepines, if you feel that would be right for you, speak with your health care professional about it. They may suggest Buspar, I would suggest they retire as studies have shown that to be tantamount to worthless as well. Talk to your healthcare provider if you feel that would be right for you. |
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#17
Quote:
I can't find a therapist in DE (most don't take Medicare) and I'm not going to do online therapy. I tried that with a Dr. and it was an awful experience. Last two therapists I saw never said a word to me so I never went back to them. My Psychiatrist said he does have something in mind that would help my mood which doesn't need a prescription but he said he's not going to tell me what it is until I get more tests done for my endocrinologist in 3 weeks. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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#18
I like Van Gogh and classical guitar
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,514
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#19
My Dr wants to put me in a long term facility because I can't do anything anymore. It takes me all day to get out of bed and I feel horrible when I go out. I'll be damned if I have to go to a group home. He said people there will help me. BS! I was in a halfway house in the 90's after I got ECT and I had teams come to my house 10 yrs ago and it was all a complete waste - none of them tried to help me. None of them were educated and they would come to my house and not say anything or else they would push me around so I told the team Director I was quitting! And I've been to tons of day programs which were a waste of time - the people who run those place don't try and help anyone. (It was like the blind leading the blind.)
I don't know why I haven't been able to pull myself together the last 45 yrs but my main problem of not being able to identify with myself (and my mood disorder) started in my teens/20's when I started dissociating and nobody has been helping me with this the last 20 years. I've done TONS of things in my life to try and get better: go to college, work, exercise extensively, travel, therapy, meds, hobbies, etc. and none of it ever helped.. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Discombobulated, unaluna
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Member Since Jul 2019
Location: Michigan
Posts: 113
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#20
I have a similar story and am now 51. I feel as though I lived my entire life wrong and now it is too late. I lost everything and everyone. I see no future. I tried so many treatments, medications, and therapies but nothing works.
I cannot get myself to do things anymore. |
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