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My situation has greatly worsened as I am in terrible sleep cycle that i feel I can't get out of.

 

I know I need to stay awake until 9pm but around 7pm, I am feel so tired, I can't stay awake. As a result, my sleep cycle is totally messed up.

 

I had mentioned going to the library but I honestly don't feel safe driving a car in my sleep deprived state.

 

This all started after I was waking up early due to nasal congestion and had accumulated a big sleep deficit.

 

By the way, I saw an ENT who was worthless and could hardly wait to get me out of his office even though there weren't any patients waiting.

 

I looked into online CBT and tried to ask a question about it. I received a laconic reply that all the answers were on the website which was a bunch of crap.

 

Anyway, I am not doing well.

 

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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  • Administrator

Hopeful saw an ENT who used acupuncture, this person helped her a lot.

 

I use Flonase for my allergies, they've been awful this fall. It doesn't work for you?

 

How about the cushion that raises your head while you're sleeping?

 

How about five minutes of light box in the morning?

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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CS,

I don't have advice, but do have {{{cyberhugs}}} I hope you feel better soon.

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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CS, I wish I could offer something hopeful for you.

I am thinking of you and hoping you can find an answer.

History is approximate; I didn't track my dosages.

 

1995 - started zoloft/sertraline for depression

1995-2008 - sertraline ranged from 100-200mg, may have gone as high as 250mg

2006 - 2009 - added welbutrin/budeprion SR, 150 mg

sometime in 2009-2010 - stopped budeprion c/t

sometime around 2009-2010, Tapered down sertraline w/o guidance to 50 mg, then 25mg.

~ feb 2010, stopped sertraline.

~ Apr 2010, resumed 25mg low dose (really bad business trip)

Oct 2010, stopped sertraline

Jan 2011 - another bad business trip "breaks" my sleep.

 

current issues include insomnia, anxiety, GI distress, depression.

Taking multivitamins, Vitamin D, fish oil, Chinese herbs, ~ 0.5mg melatonin in the evening.

Going to therapy and acupuncture once a week.

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Hi Alto,

 

My sleep was better last night although of course, I am still waking up early in the morning. But I was so tired that even falling asleep prematurely didn't affect the sleep cycle as badly even though I still woke up every 2 hours.

 

The ENT did give me some Nasonex samples. But the SOB didn't even tell me how often or when to take it.

 

God damm, that was a total waste of money. Tell me again why I went to see this guy?

 

Guess I will find the prescribing information.

 

"Hopeful saw an ENT who used acupuncture, this person helped her a lot.""

 

I will PM her to get the name.

 

""How about the cushion that raises your head while you're sleeping?""

 

I did try a cushion from Best Buy that was very uncomfortable. I will experiment sleeping on my side which is supposed to reduce sleep breathing problems.

 

"How about five minutes of light box in the morning?""

 

I would love to try this but I am reluctant to do it without medical supervision due to having a family history of cataracts and macular degeneration.

 

Thanks for responding and thanks to Ajay and Barb for replying also.

 

CS

 

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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  • Administrator

The instructions for Flonase are two puffs in each nostril once a day. I think Hopeful uses it as needed.

 

I understand your reluctance to risk the light box. But the risk-benefit analysis should include whether a small increase in risk to your eyes in the future might be worth improving your quality of life now.

 

It's entirely possible that just 5 minutes of light box a day will help. If it doesn't help, you can always stop it and sell the box on Craigslist.

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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The instructions for Flonase are two puffs in each nostril once a day. I think Hopeful uses it as needed.

 

I understand your reluctance to risk the light box. But the risk-benefit analysis should include whether a small increase in risk to your eyes in the future might be worth improving your quality of life now.

 

It's entirely possible that just 5 minutes of light box a day will help. If it doesn't help, you can always stop it and sell the box on Craigslist.

 

Thanks Alto.

 

And I was wrong about him not providing instructions. Due to cognitive impairments, I had totally forgotten that he had. Very scary and upsetting.

 

Unfortunately, I took the Nasonex which is the sample that was provided and it made my congestion worse.

 

I understand what you're saying about the light box but if my problem is due to sleep breathing issues which again happened last night in spite of doing to bed later and getting up later, I don't see how it would help.

 

Oh and I slept on my stomach just to see if that would make a difference and it didn't.

 

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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Well, the good news is that my sleep on Sunday night was improved although definitely not great. But I was able to accomplish tasks I hadn't been able to get done like grocery shopping.

 

Unfortunately, in spite of my best efforts, I fell asleep early yesterday afternoon which once again messed up my sleep cycle as you can tell from this early posting. So Alto, I am going to order a $60 light box from Amazon that got good reviews and am looking forward to getting my life completely back. I guess I just had to do a little more suffering before I realized that the small risk of damage to my eyes was worth taking.

 

I will be careful and use the lowest settings and start off in small increments.

 

As far as the nasal congestion, I have been vacuuming my bedroom area including the mattress and bedspread which probably needs to be dry cleaned but I don't have the cognitive power to take the steps to do it. Per the advice of someone on another board, I also put my pillows in the freezer to kill of the dust mites. I also changed my sheets.

 

I do feel slightly less congested so that may have helped the other night. Since my sleep cycle was messed up yesterday by falling asleep prematurely, I can't say what worked or didn't regarding the nasal congestion effecting sleep.

 

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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  • Administrator

With the nasal sprays, sometimes it takes a few days of use to reduce the swelling inside your nose. I'm having a bad time with allergies right now myself.

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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  • 2 weeks later...

I have been dealing with severe insomnia big time. Finally, I slept last night.

 

Desperate about wanting two good nights of sleep in a row, I was diligent about practicing good sleep hygiene. I cut down my caffeine intake and got sun in the morning and afternoon. When I felt myself nodding off, I stood in front of the TV until I felt I was no longer in danger of falling asleep prematurely.

 

Then I went to a condo board meeting in which they served refreshments. I asked the manager who runs our property management firm for some caffeine free diet coke. Unfortunately, I wasn't paying attention as the guy gave me regular diet coke. I was halfway through the can when I realized the buzz I was getting was due to the caffeine.

 

I totally went off on the guy and said he needed to pay attention when someone asks for caffeine free coke as I had a health condition. Of course, I should have checked but due this constant sleep deprivation, I didn't pay attention.

 

I was so upset and left the meeting. I was sobbing hysterically when I got back to my apartment.

 

Between the tears, I figured I would try and do some hard exercising to see if I could burn it off and prevent the insomnia. I feel like my days of compulsively overeating and exercising to burn off all the calories.

 

Anyway, I am so embarrassed at my outburst and feel so freaking mentally fragile. But Gayle Greene talks about it in the book, Insomniac as to how any little thing can throw off someone's sleep and that is definitely true of me.

 

Can anyone relate to this?

 

Thanks!

 

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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Oh do be careful with the aspartame CS! That is pure poison to the nervous system. There are some brands that have Splenda for sweetner instead of Nutrasweet. I think Pepsi One has Splenda. Also, Diet Rite sodas have Splenda.

 

 

I have gotten short with my mom a couple of times and felt so bad. I apologized but still felt bad. She understands what I'm going through. I didn't actually yell at her, but just snapped when I was irritated. It is hard.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Oh do be careful with the aspartame CS! That is pure poison to the nervous system. There are some brands that have Splenda for sweetner instead of Nutrasweet. I think Pepsi One has Splenda. Also, Diet Rite sodas have Splenda.

 

http-~~-//www.youtube.com/watch?v=vpbZpgDP2pg

 

I have gotten short with my mom a couple of times and felt so bad. I apologized but still felt bad. She understands what I'm going through. I didn't actually yell at her, but just snapped when I was irritated. It is hard.

 

Thanks Shanti.

 

Oh, what is so ironic is this is the first diet soda I have had in months. So my consumption of aspartame has been very minimal.

 

That is good your mom understands what you are going through.

 

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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CS,

 

I'm really sorry about that. I've lost it when I had a bad reaction to a supplement. I started yelling at my cell phone rep, who works for a subsidiary of Deutsche Telekom, about how her company had ridiculous rules, that they were stupid German rules. I was completely losing it. My carrier was T-mobile and the rep was in, like, San Diego. I incoherently mad. I had an anger breakdown. It happened one other time after I cold-stopped my effexor and replaced it with pristiq (this didn't work!) in one step.

 

Right now I'm having some new reactions. Pain and loss of feeling in my hands and feet. And I am mentally tired also.

 

And after I have a good stretch, when things slip back, I get very angry. Usually there is no one to go off on though or I probably would have gone off in a rage more frequently. And, I bet you're the same, I'm a totally reasonable person in 'real life'. Before this I was non-confrontational and would never feel rage or anger. In some ways it's good to feel those feelings... but it's not good. If that makes sense.

 

Remember that you recently slept well and, despite this setback, you will sleep well again in the future.

 

Alex

"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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CS,

 

I'm really sorry about that. I've lost it when I had a bad reaction to a supplement. I started yelling at my cell phone rep, who works for a subsidiary of Deutsche Telekom, about how her company had ridiculous rules, that they were stupid German rules. I was completely losing it. My carrier was T-mobile and the rep was in, like, San Diego. I incoherently mad. I had an anger breakdown. It happened one other time after I cold-stopped my effexor and replaced it with pristiq (this didn't work!) in one step.

 

Right now I'm having some new reactions. Pain and loss of feeling in my hands and feet. And I am mentally tired also.

 

And after I have a good stretch, when things slip back, I get very angry. Usually there is no one to go off on though or I probably would have gone off in a rage more frequently. And, I bet you're the same, I'm a totally reasonable person in 'real life'. Before this I was non-confrontational and would never feel rage or anger. In some ways it's good to feel those feelings... but it's not good. If that makes sense.

 

Remember that you recently slept well and, despite this setback, you will sleep well again in the future.

 

Alex

 

Yes yes yes. I wonder if this may be why I'm subconsciously isolating--protection

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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CS,

 

I'm really sorry about that. I've lost it when I had a bad reaction to a supplement. I started yelling at my cell phone rep, who works for a subsidiary of Deutsche Telekom, about how her company had ridiculous rules, that they were stupid German rules. I was completely losing it. My carrier was T-mobile and the rep was in, like, San Diego. I incoherently mad. I had an anger breakdown. It happened one other time after I cold-stopped my effexor and replaced it with pristiq (this didn't work!) in one step.

 

Right now I'm having some new reactions. Pain and loss of feeling in my hands and feet. And I am mentally tired also.

 

And after I have a good stretch, when things slip back, I get very angry. Usually there is no one to go off on though or I probably would have gone off in a rage more frequently. And, I bet you're the same, I'm a totally reasonable person in 'real life'. Before this I was non-confrontational and would never feel rage or anger. In some ways it's good to feel those feelings... but it's not good. If that makes sense.

 

Remember that you recently slept well and, despite this setback, you will sleep well again in the future.

 

Alex

 

Yes yes yes. I wonder if this may be why I'm subconsciously isolating--protection

 

Barb, I think that's part of my isolation issue too. I get irritable with people right now and I'd rather just not be around anyone. My son and daughter are about the only ones that don't drive me nuts. I'm back with my boyfriend and he knows now not to talk to me very much until I'm through this lol. He's being lovingly supportive and keeping a safe distance. I just need lots of room right now.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Hi Alex,

 

""Right now I'm having some new reactions. Pain and loss of feeling in my hands and feet. And I am mentally tired also.""

 

I am so sorry to hear that. I am very lucky that never happened to me during withdrawal. That must be tough to deal with.

 

""And after I have a good stretch, when things slip back, I get very angry. Usually there is no one to go off on though or I probably would have gone off in a rage more frequently. And, I bet you're the same, I'm a totally reasonable person in 'real life'. Before this I was non-confrontational and would never feel rage or anger. In some ways it's good to feel those feelings... but it's not good. If that makes sense.""

 

It does make sense, yes,

 

""Remember that you recently slept well and, despite this setback, you will sleep well again in the future.""

 

Unfortunately, I haven't had any good stretch of sleeping well and it is really affecting me cognitively. What is ironic about last night is I know what a bleeping can of regular diet coke looks like. But my brain was so fried that I took the guy at his word without stopping to think that "wait a minute, he just gave you a can that is silver, which means this is regular diet coke."

 

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 know what a bleeping can of regular diet coke looks like. But my brain was so fried that I took the guy at his word without stopping to think that "wait a minute, he just gave you a can that is silver, which means this is regular diet coke."

CS,

 

Interesting that you bring this topic up today. Did you see the story today about Coke changing the classic cans from red to white for a polar bear promotion? I drink Coke Classic (red cans), but about 2 weeks ago got the white cans (that's all they had). I took one sip and knew it was WRONG - flat. Told my husband who said that was all they had that wasn't diet, caffeine-free, etc. Then this story broke last nite and I did my little haha told-ya-so victory dance. Coke is claiming it's all an illusion, that the formula is the same. It's not. The Coke in white cans taste like Pepsi.

I hadn't thought about a safety situation like yours. The can appearance plays a large role.

Coke is recalling the white cans.

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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You just made a mistake CS. Don't beat yourself up. Yeah, Coke has changed the color of their cans so much! And you don't drink it often enough to have it ingrained in your mind what it should look like.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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CS,

I keep having more thoughts on this because I relate so well. I had an incident w/husband the other nite and went off on him (he deserved it, really). I was so wound up, I couldn't sleep, just kept replaying it in my mind. I suppose it would fall into the 'neuroemotion' category. However, as Alex alluded to, I don't want to suppress my feelings or write them off as something other than authentic either. Yes, they ARE exaggerated from my baseline, but my baseline was unhealthy. It's that slippery slope of attempting to define 'normal'.

I'm always attempting to draw parallels and the one that comes to mind here is peanuts. If you told someone you could not have peanuts and you got peanuts disguised in something, you would have ended up in the ER.

I agree, don't beat yourself up. You had every reason to be angry.

I feel like I'm talking in circles. Hope it makes sense.

 

{{{HUGS}}}

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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You just made a mistake CS. Don't beat yourself up. Yeah, Coke has changed the color of their cans so much! And you don't drink it often enough to have it ingrained in your mind what it should look like.

 

Thanks Shante.

 

Yeah, I can't remember the last time I drank diet coke out of a can. What is so ironic is initially, I was going to drink water but was dying for caffeine free regular coke. So when i didn't see it, that is why I asked for caffeine free coke and sadly met my fate.

 

Now that I have had time to think about it, I do recall thinking that it didn't look like the diet coke can. But when you get a point where you don't trust your brain, you start questioning everything and unfortunately, I didn't trust my initial instincts.

 

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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Well Barbara, from what you have said about your husband, he deserved it. But I understand what you're saying.

 

Thanks for saying I have a right to be angry. I mean, yeah, I have to take my share of responsibility but when someone asks for caffeine free beverage and you don't listen to what they say, it is very frustrating. Even when I tried to explain this was a health issue, he didn't get it.

 

What is so ironic about the situation is I could have accepted it better if someone had given me caffeine starbucks instead of decaf. At least it tastes good for crying out loud.

 

But to lose sleep because of a bleeping diet soda that tastes horrible sucks big time.

 

CS

 

CS,

I keep having more thoughts on this because I relate so well. I had an incident w/husband the other nite and went off on him (he deserved it, really). I was so wound up, I couldn't sleep, just kept replaying it in my mind. I suppose it would fall into the 'neuroemotion' category. However, as Alex alluded to, I don't want to suppress my feelings or write them off as something other than authentic either. Yes, they ARE exaggerated from my baseline, but my baseline was unhealthy. It's that slippery slope of attempting to define 'normal'.

I'm always attempting to draw parallels and the one that comes to mind here is peanuts. If you told someone you could not have peanuts and you got peanuts disguised in something, you would have ended up in the ER.

I agree, don't beat yourself up. You had every reason to be angry.

I feel like I'm talking in circles. Hope it makes sense.

 

{{{HUGS}}}

 

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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  • 3 weeks later...

I saw a sleep med doctor today whom I liked a lot by the way. She feels based on the examination of my airway that there is a good chance I have sleep apnea.

 

She also wants me to use the netipot so I will give it another shot to see if it works.

 

Those of you who I have corresponded with regarding sleep apnea, I may be asking lots of questions. You have been forwarned:)

 

By the way, I was initially reluctant to give my psych med history as I wanted to get a sense of whether I could trust her or not. But I realized quite early during the intake that I needed to share everything when she asked me how long my problem had been occurring.

 

She was fine. When she found out that one of my meds was adderall, she mentioned that many people are misdiagnosed with ADHD who have sleep apnea. Of course, we already knew that.

 

And the other question is how many people who are depressed from lack of sleep are getting stuck with ADs instead of having the cause investigated for possible sleep apnea?

 

Anyway, I will keep you all posted. It is quite overwhelming dealing with this but I think once I get a confirming diagnosis, I will feel alot better.

 

I do know this, I am going to do everything in my power to make the c-pap work. I mean, this is a life issue, I have to succeed come heck or high water.

 

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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As an FYI, I used my sinus irrigator last night because the sleep medicine doctor had wanted me to use a neti-pot. It seemed that it would accomplish the same purpose so I thought I would save some bucks since I had it in storage.

 

I am correct about why it doesn't work. The water does not drain properly through my sinuses because of the deviated septum. After initially feeling some relief, I felt just as bad about 45 minutes after completing the process. I am sure I did it correctly.

 

Anyway, as I mentioned in my "gluten" post, I do feel better since I have tried to stick with a mostly gluten and dairy free diet.

 

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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CS~

I've been reading a bit about narcolepsy recently because a friend had it and struggled for several years to find a correct diagnosis and treatment

 

The Narcolepsy Network is a forum with the same setup as this one

Many of their stories are identical to ours with most being diagnosed with depression and bipolar for avg of 10-15 yrs before MSLT showing narcolepsy ~of course they were treated with the same psych meds for all of those years

I didn't join their forum although I am curious how they DCd ADs when diagnosed with narcolepsy

I gather that sleep apnea is involved in only some cases or may be a complete different disorder with similar presentation ~Im not well informed on that whole area

Narcolepsy is thought to have immune system correlation (autoimmune) that creates havoc with circadian rhythm but I believe it is diagnosed as sleep disorder because causation has not been proven

They mention the different sleep specialists and areas of focus ~i think they are pulmonology /neuroendocrine/psych ~not certain

It sounds like the mainstay of treatment is stimulants and wake -promoting agents although I read of some taking SS/NRIs for the depression and anxiety that ~as we know ~goes hand-in-hand with sleep deprivation

I felt so sad reading that forum and hearing what my friend probably went through but told only her husband and sister ~she was an extraordinarily vibrant and intelligent woman who was always helping and supporting everyone else and always life of the party

After reading a bit on the Narcolepsy Network I realized how similarly they are treated because their primary symptomatology is tiredness /fatigue/anxiety (some due to meds)~sittingducks for a psych dx

I thought you might want to check it out

They might know docs who would be better able to unravel our situations with ADs

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 Barb,

 

I am certainly no expert but from what I have read, both apnea and narcolepsy can cause people to fall asleep at inappropriate times such as at business meetings due to disturbances in the sleep cycle. With apnea, this is due to the person stopping breathing at various times and that is why a cpap is the treatment prescribed that will keep the airway open.

 

That does not happen with narcolepsy and that is why poor people are stuck with being offered stimulants as the treatment of choice for staying awake so they can function. I am curious if anyone has ever done a study to see if there is a relationship and if cpap therapy would be helpful to people with narcolepsy.

 

I am stunned that people with narcolepsy are misdiagnosed as having depression and bipolar disorder. Then again, I guess I shouldn't be since in the literature, sleep disorders are many times blamed on psychological disorders.

 

I went to the Narcolepsy Network site out of curiosity and my heart goes out to those people. Their posts on drugs remind me so much of what all of us went through with our "drug" fun.

 

But yet, it seems like they don't have an option for going drug free to combat their excessive sleepinesss as I can't think of what alternative remedies would work. I hope I am wrong of course.

 

I am sorry about your friend. I can't imagine what she went through.

 

My sleep medicine doctor has a pulmonary specialty. As long as the person didn't have a psych focus, I decided it really didn't matter as what was important to me was does the doctor seem like she/he cares about and listens to the patient and this woman obviously did. Of course, one visit does not make for a successful experience but so far, so good.

 

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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hi Comsport,

 

After your night tests for sleeping, the tests will show how many stops in sleeping you have, and serioussness of them; it is mathematical if you will need a Cpap; i know someone had one; it may be possible you have not sleep apnea...

when sleep apnea, the person awakes with a lack of air, and moves arms, see nightmares, apparently you have not this,

the test will give the logic result

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 

 

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CS~

I'm with you on the 'anything but psych' line of thinking

I hope you get some answers and help from this doc • I'll be interested to hear what you learn

As serotonergic meds alter sleep architecture and also immune function I would not be At all surprised if SS/NRIs are one day found to be a risk factor for narcolepsy as they are for parkinsons /osteoporosis/cardiometabolic/SIADH etc

I recall one person on the Narcolepsy Network saying that she felt much better after getting off of the AD although I don't recall which one she was on

It really is a sad mess that thousands of people are in when taking into account all of the different support groups for many different diseases that medicine does not know how to treat

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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CS~

I'm with you on the 'anything but psych' line of thinking

I hope you get some answers and help from this doc • I'll be interested to hear what you learn

As serotonergic meds alter sleep architecture and also immune function I would not be At all surprised if SS/NRIs are one day found to be a risk factor for narcolepsy as they are for parkinsons /osteoporosis/cardiometabolic/SIADH etc

I recall one person on the Narcolepsy Network saying that she felt much better after getting off of the AD although I don't recall which one she was on

It really is a sad mess that thousands of people are in when taking into account all of the different support groups for many different diseases that medicine does not know how to treat

 

Thanks Barb, I will let you know. I do the home sleep test this week. I hope to god the doctor comes back right after New Years because I am really struggling big time. I can't remember exactly when she was due to return.

 

Even though CPAP is the standard treatment for apnea, there is an extensive online support group for the condition because apparently alot of doctors were clueless in using the right machine and picking the right pressure. I have learned so much already.

 

Agree with you about the meds causing narcolepsy and other other conditions. Google Barry Krackow and Zoloft. He is a sleep medicine doctor who suggested that the side effects are due to alternations in the sleep architecture causing problems. I was hoping he would be more critical of psych meds but unfortunately, he wasn't. But it was still pretty damming.

 

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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Good video that seems to be geared toward the general public as a teaser of sorts to plant the seed and encourage people to think for themselves

"Zoloft is used to treat depression /anxiety /suicidal ideation/insomnia AND it can cause depression /suicide /sleep disorders …"

Most people should be scratching their heads and while saying "hmmm…"

 

I like how he did this bc he can't come out and state causation that hasn't been proven but leads people right up to it ~ I suspect that docs are also acutely aware of the risk of someone seeing that and CTing an AD ~I wonder what liability is involved in DCing ADs

We know how easily wd symptoms are mistaken for relapse and it seems reasonable that docs may be afraid to deal with dangers and be accused of malpractice

A 'worse of two evils' conundrum and DCing is the less predictable/more volatile

We need a consent to UNtreat w full disclosure of risks

 

The intelligence /insomnia vid was also good and can be applied to depression IMHO

 

THANKS CS

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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  • Administrator

Sleep specialist Barry Krakow on Zoloft

 

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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Good video that seems to be geared toward the general public as a teaser of sorts to plant the seed and encourage people to think for themselves

"Zoloft is used to treat depression /anxiety /suicidal ideation/insomnia AND it can cause depression /suicide /sleep disorders …"

Most people should be scratching their heads and while saying "hmmm…"

 

I like how he did this bc he can't come out and state causation that hasn't been proven but leads people right up to it ~ I suspect that docs are also acutely aware of the risk of someone seeing that and CTing an AD ~I wonder what liability is involved in DCing ADs

We know how easily wd symptoms are mistaken for relapse and it seems reasonable that docs may be afraid to deal with dangers and be accused of malpractice

A 'worse of two evils' conundrum and DCing is the less predictable/more volatile

We need a consent to UNtreat w full disclosure of risks

 

The intelligence /insomnia vid was also good and can be applied to depression IMHO

 

THANKS CS

 

Alto, you're too quick for me as I was getting ready to post it.

 

Barb, you're very welcome and you made a great point about the Zoloft video. I am too cranky these days:) from lack of sleep.

 

You're so right about the issue of malpractice and discontinuing ADS and WD issues. We definitely need that consent.

 

By the way, Dr. Krakow has apnea himself and I am wondering if that is why he appears to be on the cutting edge with treatments? Apparently, his center gets alot of 2nd opinion requests in New Mexico because of the inadequate treatment people are getting.

 

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'm sure I could out-crank anyone right now

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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  • 3 weeks later...

Talked to sleep doc who says that based on her quick glance of my home sleep study report that I have sleep apnea. Couldn't tell me the severity range.

 

As an aside, they don't seem to have a protocol for interpreting it which is another issue.

 

Meanwhile, increasing my vitamin D has given me the best two nights of sleep I have had in months. The problem is I haven't been able to get two good nights of sleep in a row. It is like the supplements are too activating when I have had enough sleep. So I need to experiment.

 

Out of curiosity, I did some googling and found this site:

 

http://www.vitamindwiki.com/tiki-index.php?page_id=1357

 

Doc is not making claims that Vitamin D cures sleep apnea but it seems in reading her site, I am not imagining what I am experiencing.

 

I also find this site by someone who seems to have had a similar experience.

 

http://pandemicsurvivor.com/2012/01/07/sleep-apnea-survival/

 

Stay tuned.

 

CS

 

PS - I need House on the case. LOL

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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Wow... I hope what you find out leads to more and more improvement!

 

P.S. I often fantasize about having a House-like doctor on the case... perhaps one with a better disposition and less likely to experiment madly, but nonetheless. =)

'94-'08 On/off ADs. Mostly Zoloft & Wellbutrin, but also Prozac, Celexa, Effexor, etc.
6/08 quit Z & W after tapering, awful anxiety 3 mos. later, reinstated.
11/10 CTed. Severe anxiety 3 mos. later & @ 8 mos. much worse (set off by metronidazole). Anxiety, depression, anhedonia, DP, DR, dizziness, severe insomnia, high serum AM cortisol, flu-like feelings, muscle discomfort.
9/11-9/12 Waves and windows of recovery.
10/12 Awful relapse, DP/DR. Hydrocortisone?
11/12 Improved fairly quickly even though relapse was one of worst waves ever.

1/13 Best I've ever felt.

3/13 A bit of a relapse... then faster and shorter waves and windows.

4/14 Have to watch out for triggers, but feel completely normal about 80% of the time.

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  • Administrator

Interesting, cs. The doctor who is prescribing vit D3 for sleep apnea is a neurologist in Texas.

 

(I merged your update with your Intro topic. Please let me know if you'd like to change the title.)

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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So it's not a fluke that I felt I slept better after taking Vit D (Q)

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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