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Posted

//first of all, this is sort of long. Why first of all??, that is all of all.

 

Not long ago I believed that my mother and father didn't really care about me. As a teen, if I stayed out late with my friends, my mother rarely said a word and if she questioned me, her questioning lacked punch. I dismissed her questions with re-assurnace. I'm fine mom, don't worry. She let me be in charge.

 

My dad tried on occasion to impart a 'lesson to his boy', like how to stand up to a school yard bully. His advice and understanding always came up lacking, resulting in awkward pep talks demonstrating his own insecurity. I felt like my dad never understood what he should say that I knew better than him anyway.

 

For a long time, I misunderstood my parents. From their words, more specifically their actions, I felt insecure in their commitment to me. I could not count on them.

 

Without conscious awareness, I assumed responsibility for myself, probably at around age 12 or 13. I stopped bringing problems to my parents because I'd realized they lacked ability or willingness to offer useful protection, support and guidance.

 

In retrospect, I realize my father and mother lacked capability and compentence rather than love and empathy. (To the point I'm making this is not that significant, however I'd like it known that my parents are well-intentioned individuals.) At the time, I felt discarded yet somewhat exalted simultaneously.

 

My father left my family when I was 14 years old causing my mother immeasurable pain and equally affecting my brother and sister. At this time I became enitirely dependent on me, just me. But 'me', at 14, wasn't a good parent for me, being just 14. Yet I stayed out of trouble though at the expense of realizing potential and properly maturing as necessary to succeed in adulthood.

 

When I encountered truly troubling anxiety in college, I knew my parents lacked the capability to help me. I turned to a therapist and (later) psychiatrist because I assumed that incompetence, gross incompetence as displayed by my parents, occurred infrequently among 'adults'. The adults in charge of the world surely know what they are doing, I thought.

 

It turned out my therapist knew little. Like my father, he deferred to me quite a lot. He used to tell me that I my intellectual ability amazed him. While these sentiments were flattering for a teen, truth was my therapist actually just wasn't too bright a guy. But he did refer to me a doctor. The doctor's fluency in 'smart talk' impressed me, intimidated me even. I absolutely believed my doctor's ability and judgment exceeded those in any other I knew. I valued my doctor's advice 100X more than my father's. Even when my doctor gave direction that appeared faulty, I gave him a huge benefit against doubt.

 

Eventually, I learned of my doctor's addiction problems, that he sat in our sessions regularly impaired, that he employed tactics of subtle intellectual bullying that kept his patients and office co-workers from holding him accountable (typical addict). His diagnosis lacked accuracy. His presciptions caused unbelievable personal destruction.

 

In 2010, I quit taking psychiatric drugs -- though eventually restarted a benzo (don't recommend) to cope with w/d. It took time, but I pieced together the disparate events of my life and realized that my tale was practically unbelievable. I was Drugged for so long I developed compuslive and impulsive habits. I lacked motivation. I could not even wake up on time or sometimes even sleep at all. I was a drug-induced addict, bankrupted, white trash failure which, from the outside, looks indistinguishable from a non-drug-induced failure.

 

Today, I am riddled by health problems. These are severe with the potential to become very severe. My body is poly-infected. My GI-system is dangerously impaired. My endocrine system is impaired from malnutrition, at a minimum. And ... Etc ...

 

I see a doctor, one specializing in mold treatment. My frustration is growing with her because all symptoms are blamed on mold. However, it's clearer now that mold is insufficient as a sole explanation. She is the fifth doctor, or so, I have seen this year. The first four, I lacked confidence in and left.

 

The first few doctors, never got things right because the biotoxin illness was never investigated. My current doctor, who I sought out after learning of biotoxin exposure, refuses to consider anything but the toxin explanation. She is exceedingly optimistic, just keep treating the mold and things will turn out fine. My doctor in New England believed the labs indicated I'd cleared the mold, largely, and that now was the time to move on to other issues, issues made possible by diminished immune function caused by the mold (and probably stress from w/d, among other things.)

 

I am too far from New England doctor and I need medical treatment. But I can't shake my great fear, that the doctor does not know what he is doing.

 

If I really look at it, everyone in whom I've placed total trust has failed me horribly. I think all of the authority figures meant well. They were simply unable to help me.

 

My belief in the incompetence of others, causes anxiety. For instance, when I am at the doctor and the doctor says something I know from research to be untrue, I get anxious. I wonder the degree of his incompetence.

 

This is problematic in that establishment figures do not take me seriously. I have a limited history and, from medical records, it seems I have jumped from doctor to doctor. And I take benzos. It does not go well when I express my concerns to my doctors. Maybe it's how I would feel if a 12 year old questioned me in an area of my expertise.

 

Doctors, not just the wildly egotistical ones, treat me well-beneath them. Remember, from the outside I look rather like a failure and the red flags (having no cell phone, living with my mother, no steady employment, etc) can't be totally hidden for long.

 

My default assumption of some degree of incompentence probably can't be hidden either. It comes across.

 

However, I need medical help. My sex organs, eyes, and stomach/intestines do not work. I am malnourished. Other glands are not functioning well. I have numerous infectious. I have malabsorption. I am at risk for serious GI disease, infertility, autoimmune conditions.

 

I am a patient with little leverage. I am a complicated case from a diagnostic perspective. Biotoxin illness is poorly understood by and large. Autoimmune disease is poorly understood at large. Psychiatric post-acute withdrawal is not understood entirely.

 

I don't have the specific biological and medical expertise to treat myself. It's possible that I won't find a doctor who has this expertise either. As I continue to look, the more it looks like I might just be crazy after all. I would stop looking if I found a capable doctor who was open to what I have experienced and skilled in treating my diseased state.

 

I am afraid. Maybe no one can help me, nobody will listen. So this is what I am today. I feel Afraid.

 

I Carry The Incompentence and Incapableness of My Parents and Psychiatric/Psychological CareGivers

 

In this knowledge and uncertainy, I am left alone. Once again, as it's been since I was a kid. Truth is, I'm not that smart and barely functional. I can't trust. I'll die by my mistake before I die by yours, doc.

 

I wish I could trust doctors, but probably trust will never again be possible.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

Posted

it is normal to be in your state after so many years,

do you really need a doctor(incompetent) to help? try to taper the benzo slowly and then try to hang on, we have all suffered hell, you are young, you have to heal faster than an older; there is a high price to pay for these poisons, but you will be better as all people

for anxiety 

12 years paxil - cold turkey 1,5 month - switch celexa 1 year taper; total 13 years on brain meds 

67 years old - 9 years  med free

 

in protracted withdrawal

rigidity standing and walking, dryness gougerot-szoegren, sleep deteriorate,

function as have a lack of nerves, improving have been very little 

 

Posted

I've been where you are so many times Alex... terrified that I too was irreparable...

 

but our bodies and mind and spirits work in wondrous ways and you are bravely going down the journey of discovery...I've not found a single doctor who knows how to help me either...though I've now met a couple who at the very least acknowledge their limitations and are willing to discover with me...I don't expect any one doctor to piece it all together anymore...for better or worse that is my job...but I do find many good helpers now...understanding that I won't find one person helps me appreciate those who help me understand the pieces.

 

I know how scary it is...I still routinely visit that terror...I'm still really sick too, but it's clear I'm traveling in the right direction.

 

hang in there Alex.

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

Posted

Hi Alex,

 

Even though my medical situation is totally different from yours regarding the inability to stay asleep on the cpap machine, I so relate to what you said.

 

""I see a doctor, one specializing in mold treatment. My frustration is growing with her because all symptoms are blamed on mold. However, it's clearer now that mold is insufficient as a sole explanation. She is the fifth doctor, or so, I have seen this year. The first four, I lacked confidence in and left.""

 

Welcome to the modern health care system where each professional sees things through their own narrow lens. They are totally incapable of looking at the big picture.

 

I desperately need a sleep specialist who can do this but the chance of that happening area about as likely as my becoming a millionaire. Ironically, in a sleep deprived state that greatly impacts my cognitive functioning, I have to figure this out on my own.

 

Gosh, I can't imagine how you must have feel in your severely impaired state not getting answers from 4 previous doctors. But sadly, I am not surprised.

 

I remember in the book, "How Doctors Think", an example was provided of someone who had suffered horribly for years having been misdiagnosed as having an eating disorder. She almost wasn't going to see another specialist due to understandable mistrust but finally did. This guy diagnosed her with celiac disease.

 

Just like you describe later in this post, once you are labeled, particularly ones with negative connotations such as the "P" word, you are royally screwed.

 

""The first few doctors, never got things right because the biotoxin illness was never investigated. My current doctor, who I sought out after learning of biotoxin exposure, refuses to consider anything but the toxin explanation. She is exceedingly optimistic, just keep treating the mold and things will turn out fine. My doctor in New England believed the labs indicated I'd cleared the mold, largely, and that now was the time to move on to other issues, issues made possible by diminished immune function caused by the mold (and probably stress from w/d, among other things.)""

 

This may not seem relative to your situation but bear with me. Yesterday, I was listening to a podcast of my favorite sleep physician, Barry Krakow. In reference to cpap data, he said it could be trusted if the person was feeling good and the data was favorable. He went on to say that if it was favorable but the patient felt lousy, it could not be trusted. In other words, listen to the patient.

 

That doctor sadly is practicing common behavior in believing the data over what the patient says.

 

""I am too far from New England doctor and I need medical treatment. But I can't shake my great fear, that the doctor does not know what he is doing.""

 

I wish to god I could say you were wrong but sadly, I find your fear totally understandable.

 

""If I really look at it, everyone in whom I've placed total trust has failed me horribly. I think all of the authority figures meant well. They were simply unable to help me. ""

 

Wow, I can't imagine how that must feel to you, especially in your current medical condition.

 

""My belief in the incompetence of others, causes anxiety. For instance, when I am at the doctor and the doctor says something I know from research to be untrue, I get anxious. I wonder the degree of his incompetence.""

 

It is a catch 22 situation because sadly, when you start getting anxious, doctors pick up on that and then think you have a psychiatric condition. What you described is the equivalent of the cat or dog perpetually chasing its tale.

 

""This is problematic in that establishment figures do not take me seriously. I have a limited history and, from medical records, it seems I have jumped from doctor to doctor. And I take benzos. It does not go well when I express my concerns to my doctors. Maybe it's how I would feel if a 12 year old questioned me in an area of my expertise. ""

 

And that is so wrong. We can't win for losing. I mean, if we don't question doctors and something were go seriously wrong, we would be blamed for not asking questions. But if they won't respond to them initially, then what?

 

Sure, go to someone else who is probably going to do the same thing. Sorry, I am being sarcastic.

 

""My default assumption of some degree of incompentence probably can't be hidden either. It comes across.""

 

Interesting statement. As one who is horrible with non verbal language (meaning I have a hard time hiding what I truly feel), I wonder if that is the message I am conveying. Something to think about.

 

""I don't have the specific biological and medical expertise to treat myself. It's possible that I won't find a doctor who has this expertise either. As I continue to look, the more it looks like I might just be crazy after all. I would stop looking if I found a capable doctor who was open to what I have experienced and skilled in treating my diseased state.

 

I am afraid. Maybe no one can help me, nobody will listen. So this is what I am today. I feel Afraid.

 

I Carry The Incompentence and Incapableness of My Parents and Psychiatric/Psychological CareGivers""

 

Alex, this last section bought me to tears. I am afraid also that no sleep doctor will listen to me.

 

""In this knowledge and uncertainy, I am left alone. Once again, as it's been since I was a kid. Truth is, I'm not that smart and barely functional. I can't trust. I'll die by my mistake before I die by yours, doc.

 

I wish I could trust doctors, but probably trust will never again be possible.""

 

Again, I am crying because I so related. I stupidly trusted that first sleep doctor and she destroyed that trust in the 2nd visit. I learned that I was a god damm fool to think any of these folks can be trusted.

 

Hang in there Alex and I will try to do the same.

 

CS

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

Posted

Alex,

 

As an FYI, I strongly considering seeing an ENT.

 

I really haven't been too happy with my current one but guess what? He is listed as a top ENT doctor in my area.

 

An ENT who previously misdiagnosed me as having menieres even though the testing said that wasn't the case, is also listed.

 

All I can say is ^^^@@#^^^#####@#^^^.

 

CS

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

Posted

Alex. I've attempted to respond to this at least 6 times. I type, then freeze. That's how distressing it is to feel I need treatment but I TRUST NO ONE and QUESTION EVERYTHING. It's maddening. Paralyzing.

 

There's more I want to say, but it's not coming together so i'll leave it at this.

 

Just wanted to say how much this hit home.

 

B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

  • Moderator Emeritus
Posted

I TRUST NO ONE and QUESTION EVERYTHING. It's maddening. Paralyzing.

 

Just wanted to say how much this hit home.

Barb, I can't help but feel this is where you are stuck... you need to go with your best overall take, and move on from there. To stay at questioning is perseveration, and nothing whatsoever can happen, you get stuck on samo samo samo... and are rendered impotent. Please don't take this as in any way 'preachy' because I'm wayyy too familiar with being stuck.. stuck misery is stuckness regardless of the trigger. ~S

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

Posted

I'm sorry but I will never stop questioning and it's saved me many many times over at this point.

 

Our condition is such that I don't think we should stop and we must be vigilant when seeking care.

 

Withdrawal by its nature and how long it takes to heal feels stuck...but movement is generally happening anyway...sometimes too slowly to feel.

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

Posted

I TRUST NO ONE and QUESTION EVERYTHING. It's maddening. Paralyzing.

Just wanted to say how much this hit home.

Barb, I can't help but feel this is where you are stuck... you need to go with your best overall take, and move on from there. To stay at questioning is perseveration, and nothing whatsoever can happen, you get stuck on samo samo samo... and are rendered impotent. Please don't take this as in any way 'preachy' because I'm wayyy too familiar with being stuck.. stuck misery is stuckness regardless of the trigger. ~S

 

Not preachy. ;) Yes, it's a part of the stuckness.

 

In my editing, i deleted a comment wondering if my choice to stop treatment with steroids possibly being my intuition protecting me from something that feels *wrong*. I'm not suggesting that you do this, Alex, as your case is different and I know nothing about mold.

 

I've trusted medicine implicitly in the past and to NOT do so is foreign to me. Perhaps if I was still tapering, I'd feel that I was doing SOMETHING measureable rather than just waiting to get better or worse.

 

There was a study published this week about mammograms leading to significant overdiagnosis of breast cancers and treatment being more toxic than the cancer would have been. Even to my skeptical mind, that was surprising. I was aware of that being the case with prostate cancers.

 

The whole autoimmune train is gaining steam with just about everything except broken bones thought to have 'an autoimmune component'. Diabetes, cancer, osteoporosis, arthritis, etc etc. Treatments are steroids, chemotherapeutic agents or new biologics ($$$).

 

My general life stuckness includes the many issues that festered and were never addressed while drugged.

 

Sorry for the tangent, Alex.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

  • Moderator Emeritus
Posted

Perhaps if I was still tapering, I'd feel that I was doing SOMETHING measureable rather than just waiting to get better or worse.

 

My general life stuckness includes the many issues that festered and were never addressed while drugged.

It's the stuckness now that matters though, not the tapering of the past. Similarities with patterns of old are very important.

 

Posted by she who just managed to mangle FOUR posts on this site through compulsive overediting. I do know.. and am now in the battle of my life. OY!

As always, LISTEN TO YOUR BODY! A proud supporter of the 10% (or slower) rule.

 

Requip - 3/16 ZERO  Total time on 25 years.

 

Lyrica: 8/15 ZERO Total time on 7 or 8 yrs.

BENZO FREE 10/13 (started tapering 7/10)  Total time on 25 years.

 

Read my intro thread here, and check the about me section.  "No matter how cynical you get, it's almost impossible to keep up." Lily Tomlin

 

 

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