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How much disclosure is necessary to new physicians?


Aria
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I've been fighting insomnia off and on for years and it has finally knocked me to the ground. I have a neuro-muscular disease that is being compromised, I'm so tired my balance is off and I'm in a sleep deprived fog all the time. I've discussed this with friends and the census was I needed to see medical doctors for testing to find out what the problem might be (ex: adrenal gland irregularity?). This is not something I would go into lightly (my horrid psychiatry experience). One of my friends knows I was mega psychiatric drugs for years and said very matter of factually I had to tell the new docs my history with these drugs because it would help the docs figure out the sleep issues. She said oh say the drugs were prescribed inadvertently like the doc would brush off this comment with a nod. I was on neuroleptics, anti depressants, sleeping pills and benzos for 15 years and I've been psyche drug free for 7-8 yrs. I know I got damaged from taking these drugs but after all this time is it relevant to tell at this date?? Isn't most of the damage healed the best it ever will or am I kidding myself? Any ideas on how to disclose if you feel I need to tell all?? I don't want to hide this info if indeed it will compromise testing, not assumptions, for a sleep problem?

 

The thought my sleep problem might be easily solved would be a life saver for me.

Unable at this time to correspond by private message.

 

Link to my Introduction thread: http://survivingantidepressants.org/index.php?/topic/2477-aria-my-psych-journey/

Reading my psychiatric records: http://survivingantidepressants.org/index.php?/topic/5466-drugged-crazy-reading-my-psychiatric-records/

My Success Story is listed under "Aria's Recovery".

 

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I only have my experience.

 

In my experience only one doctor has ever acknowledged my past medication history. He was a neurologist who was shocked by the excess of my regimen. I've since noticed that neurologists aren't big fans of psychiatrists. No other doctor I've told -- and I've told a lot -- ever found it relevant or interesting. Perhaps some extrapolated my risk of being 'crazy' or my symptoms being psychosomatic as higher, but nothing was said. It was like I said, "Two years ago, I went to a Celtics game." No bearing at all.

 

That's been my experience.

"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

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Exactly. Tell the doctor your entire history and your belief that psychiatric drugs might have a role in your present condition. Then be prepared for him or her to ignore what you've said.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Aria,

 

I did that with my first sleep doctor and she ended up suggesting that I see a psychiatrist. Never reviewed my sleep data.

 

Didn't disclose anything with 2nd sleep doctor. But I am convinced if I had, I would have had the same result for various reasons.

 

CS

 

I've been fighting insomnia off and on for years and it has finally knocked me to the ground. I have a neuro-muscular disease that is being compromised, I'm so tired my balance is off and I'm in a sleep deprived fog all the time. I've discussed this with friends and the census was I needed to see medical doctors for testing to find out what the problem might be (ex: adrenal gland irregularity?). This is not something I would go into lightly (my horrid psychiatry experience). One of my friends knows I was mega psychiatric drugs for years and said very matter of factually I had to tell the new docs my history with these drugs because it would help the docs figure out the sleep issues. She said oh say the drugs were prescribed inadvertently like the doc would brush off this comment with a nod. I was on neuroleptics, anti depressants, sleeping pills and benzos for 15 years and I've been psyche drug free for 7-8 yrs. I know I got damaged from taking these drugs but after all this time is it relevant to tell at this date?? Isn't most of the damage healed the best it ever will or am I kidding myself? Any ideas on how to disclose if you feel I need to tell all?? I don't want to hide this info if indeed it will compromise testing, not assumptions, for a sleep problem?

 

The thought my sleep problem might be easily solved would be a life saver for me.

 

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

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I think my current neurologist has figured out I was neuroleptics by my eyes blinking so much (his nurse made a a very loud flustered comment about it). When I tapering off said psyche drugs I had gone to a sleep doc, told her my history and she treated me like leopard exclaiming I HAD to return to my psychiatrist. She refused to treat me. That was 10-11 yrs ago and I learned something important that day because of it. I plan to go to an endocrinologist or similar types first.

 

For over 10 yrs I've carefully and systemically hidden my psyche history to protect myself. I was denied medical intervention/referrals because of it and it took too long for me to be correctly diagnosed with a progression neuro disease. I'm just scared of this again and I don't need it. Definitely wouldn't give out my old psyche diagnosis either. :rolleyes:

 

My neuro disease has been attributed to being on Seroquel.

Unable at this time to correspond by private message.

 

Link to my Introduction thread: http://survivingantidepressants.org/index.php?/topic/2477-aria-my-psych-journey/

Reading my psychiatric records: http://survivingantidepressants.org/index.php?/topic/5466-drugged-crazy-reading-my-psychiatric-records/

My Success Story is listed under "Aria's Recovery".

 

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I am curious, who told you your neuro disease was due to being on Seroquel?

 

We're really in a dammed if you do and dammed if you don't type of situation. It is so frustrating.

 

CS

 

I think my current neurologist has figured out I was neuroleptics by my eyes blinking so much (his nurse made a a very loud flustered comment about it). When I tapering off said psyche drugs I had gone to a sleep doc, told her my history and she treated me like leopard exclaiming I HAD to return to my psychiatrist. She refused to treat me. That was 10-11 yrs ago and I learned something important that day because of it. I plan to go to an endocrinologist or similar types first. My old sleep test showed I slept during the day.

 

For over 10 yrs I've carefully and systemically hidden my psyche history to protect myself. I was denied medical intervention/referrals because of it and it took too long for me to be correctly diagnosed with a progression neuro disease. I'm just scared of this again and I don't need it. Definitely wouldn't give out my old psyche diagnosis either. :rolleyes:

 

My neuro disease has been attributed to being on Seroquel.

 

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

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Aria,

 

In addition to the opinions already stated, i believe it's important to consider that no doctor wants his name attached to a case that has litigation potential. A prominent neurologist at one of the major referral hospitals in US refused to see me and i believe it's because i told him my psych drug history up front. I said it matter of factly, not for blame or causation.

 

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).

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That is interesting B because I thought that most doctors are still in denial about the damage that psych meds do.

 

CS

 

Aria,

 

In addition to the opinions already stated, i believe it's important to consider that no doctor wants his name attached to a case that has litigation potential. A prominent neurologist at one of the major referral hospitals in US refused to see me and i believe it's because i told him my psych drug history up front. I said it matter of factly, not for blame or causation.

 

B

 

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

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Hi Aria,

 

Not to sound like the "everybody has apnea" crowd, but could that possibly be an issue for you?

 

Barry Krakow, a sleep medicine doctor, has said that light sleep can lead to sleep breathing issues. Since being on psych meds can obviously lead to that situation, that is why I am asking.

 

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

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I had a 24 hr sleep test some yrs ago but I was still on a benzo (had been given for sleep) when I did it. The test showed I slept during the day (go figure) but no sleep apnea or restless legs. When I was on my psyche drug cocktail it caused me to be so drowsy I did slept till 2, 3 4 PM every day. I wonder if I should have another sleep test after I try very inclusive blood testing to rule out any physical deficiency like a sub functioning hormone or other low levels.

 

My sleep is sudden awakenings if and when I can fall asleep. I wake up in 1-2 hour segments wondering if I'd slept at all. Last night I fell a sleep at 12:30 AM and woke up at 3 AM wide awake. I laid in bed till the sun came up. Anxious?? No, I was content laying in my comfy bed. I've resisted multiple prescriptions for sleeping pills as I'm scared to take them. I tried Ambien CR yrs ago and on the third day started laughing and had trouble standing up in a restaurant. I haven't touched another sleeping pill and have a few samples of others doc have given me that stay in a drawer.

 

Knowing docs I'm sure they'd ask who'd prescribed the psychiatrist drugs I was on and why. My old dwarf of a shrink is considered one of our premier pdocs who can do no wrong. Barbarannated is right and I know the docs would have that knee jerk reaction to the list of drugs I was on. I have to have residue damage from 15 yrs of major psych drugs and here I am totally clean of them for 10 yrs but can't sleep. I hate to feel like a criminal because of what happened and have it continue to haunt future medical treatments. Let's pray my problem can be easily remedied if a plausible reason is discovered.

Unable at this time to correspond by private message.

 

Link to my Introduction thread: http://survivingantidepressants.org/index.php?/topic/2477-aria-my-psych-journey/

Reading my psychiatric records: http://survivingantidepressants.org/index.php?/topic/5466-drugged-crazy-reading-my-psychiatric-records/

My Success Story is listed under "Aria's Recovery".

 

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You might want to try a functional medicine doctor of some sort. They believe that the nervous system, endocrine system, and immune system are inexorably linked. This part is purely my opinion...if you are really sick, and you are, if you don't feel understood telling the whole story, you haven't found the right doctor yet. Best, Meimeiquest

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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That is interesting B because I thought that most doctors are still in denial about the damage that psych meds do.

CS

 

Aria,

 

In addition to the opinions already stated, i believe it's important to consider that no doctor wants his name attached to a case that has litigation potential. A prominent neurologist at one of the major referral hospitals in US refused to see me and i believe it's because i told him my psych drug history up front. I said it matter of factly, not for blame or causation.

 

CS,

The majority of docs don't realize the dangers, I agree. I think that some docs see the dangers, but don't want to get involved in cleaning up the damage done by psychiatry or risk being pulled into possible litigation against other doctors or drug companies (especially when they are doing clinical trials for pharma).

 

The bottom line is, what good does it do to reveal the history? It's a very rare doc who would acknowledge that the drugs could be effecting you this far out.

 

RE: sleep studies. Has anyone ever known of hormones being monitored at night?

 

Aria, i hope you find relief soon. I don't know how those of you with long term insomnia manage to function at all. I'm a basket case if i have 1 or 2 bad nights. :o

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).

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Hi Aria,

 

If you have good insurance coverage, it might be worth doing another sleep test just to make the previous one wasn't in error. Particularly if you are still having sudden awakenings after every 1 to 2 hours.

 

You could also have UARS which means you have breathing events that are reduced by 25%. Unfortunately, many sleep labs don't diagnose it so you would have to make sure that the one you went to did know what to look for.

 

Personally, I might do this before going the blood test route but obviously, you know what is best for your own situation.

 

Yeah, it really sucks to feel like a criminal and feel you have to hide your drug history. But we have no choice sad to say.

 

Good luck in resolving your situation.

 

CS

 

I had a 24 hr sleep test some yrs ago but I was still on a benzo (had been given for sleep) when I did it. The test showed I slept during the day (go figure) but no sleep apnea or restless legs. When I was on my psyche drug cocktail it caused me to be so drowsy I did slept till 2, 3 4 PM every day. I wonder if I should have another sleep test after I try very inclusive blood testing to rule out any physical deficiency like a sub functioning hormone or other low levels.

 

My sleep is sudden awakenings if and when I can fall asleep. I wake up in 1-2 hour segments wondering if I'd slept at all. Last night I fell a sleep at 12:30 AM and woke up at 3 AM wide awake. I laid in bed till the sun came up. Anxious?? No, I was content laying in my comfy bed. I've resisted multiple prescriptions for sleeping pills as I'm scared to take them. I tried Ambien CR yrs ago and on the third day started laughing and had trouble standing up in a restaurant. I haven't touched another sleeping pill and have a few samples of others doc have given me that stay in a drawer.

 

Knowing docs I'm sure they'd ask who'd prescribed the psychiatrist drugs I was on and why. My old dwarf of a shrink is considered one of our premier pdocs who can do no wrong. Barbarannated is right and I know the docs would have that knee jerk reaction to the list of drugs I was on. I have to have residue damage from 15 yrs of major psych drugs and here I am totally clean of them for 10 yrs but can't sleep. I hate to feel like a criminal because of what happened and have it continue to haunt future medical treatments. Let's pray my problem can be easily remedied if a plausible reason is discovered.

 

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

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Hi Barb,

 

The majority of docs don't realize the dangers, I agree. I think that some docs see the dangers, but don't want to get involved in cleaning up the damage done by psychiatry or risk being pulled into possible litigation against other doctors or drug companies (especially when they are doing clinical trials for pharma).

Thanks, that makes sense. Pretty sad though as it leaves us in the lurch.

 

The bottom line is, what good does it do to reveal the history? It's a very rare doc who would acknowledge that the drugs could be effecting you this far out.

Interestingly, my first sleep doctor seemed very receptive when I disclosed my history initially. But she obviously totally changed her tune during the 2nd meeting. It was very eerie.

 

You also don't want to reveal your history due to docs screening for mental illness. We would be sitting ducks.

 

RE: sleep studies. Has anyone ever known of hormones being monitored at night?

 

Aria, i hope you find relief soon. I don't know how those of you with long term insomnia manage to function at all. I'm a basket case if i have 1 or 2 bad nights.

It is very tough. Thanks for thinking of us.

 

Forgot to answer your "hormones" question. That is a great question. If you want, I can post it on the apnea board and see what people say. A few sleep professionals post there.

 

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

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Interestingly, my first sleep doctor seemed very receptive when I disclosed my history initially. But she obviously totally changed her tune during the 2nd meeting. It was very eerie.

CS

 

That is EXACTLY what happened with my endocrinologist. On my 1st appointment with him, he explained how SSRIs CAUSE and worsen depression over time... he sketched a visual of the different 5HT receptors and feedback loops (he does this for all endocrine conditions). I was alone at that appointment. Later, when husband went with me, this doc strongly deflected all questions about causation or previous treatments. Eerie, definitely.

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).

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Interestingly, my first sleep doctor seemed very receptive when I disclosed my history initially. But she obviously totally changed her tune during the 2nd meeting. It was very eerie.

CS

 

That is EXACTLY what happened with my endocrinologist. On my 1st appointment with him, he explained how SSRIs CAUSE and worsen depression over time... he sketched a visual of the different 5HT receptors and feedback loops (he does this for all endocrine conditions). I was alone at that appointment. Later, when husband went with me, this doc strongly deflected all questions about causation or previous treatments. Eerie, definitely.

 

Wow, that is eerie you had a similar experience.

 

I think in my case, when I didn't respond to the apap treatment, which was supposed to be the magical cure, then it was easy for the sleep doctor to blame my psych med history and peg me as a mental patient.

 

And I guess in your situation, having your husband with you made the doctor not want to be as open about the damage psych meds cause.

 

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

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I agree with Barb, sometimes they avoid getting involved.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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