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The Windows and Waves Pattern of Stabilization


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#37 Skyler

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Posted 16 June 2012 - 12:46 PM

Chaos in the neuroendocrine system as it attempts to reach homeostasis. ? Ultra sensitive to stressors that set off a cascade of events. Most of these drugs lower our stress tolerance and what may have been a mild to moderate stressor is more intense. We don't rebound as easily. I learned of this from a therapist friend (read: NON-MD) years ago when I was reacting disproportionately to "everything"! "Everything" seemed a crisis and she explained the biochemical underpinnings.

Hi Barb, and thanks for your answer. I understand this about emotions but not symptoms like tinnitus, crawling bug sensations.. etc. So while stress would make neuro emotion worse, it is not so much for other symptoms, so maybe something else is at work that would more readily effect both? This asked realizing any answer is based on anecdotal observations or conjecture.~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

 

 


#38 Barbarannamated

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Posted 16 June 2012 - 01:00 PM

I *think* "neuroendocrine" or "CNS" somehow accounts for just about anything aside from obvious fractures or injuries. Will look forward to someone else's input. This Wiki description covers ocular. I'm not clear on what the exocrine system is (ducts as opposed to glands). http://en.m.wikipedi...ystem#section_4 There is an interesting thread about the vestibular system. http://survivinganti...__fromsearch__1 RLS, bruxism, movement disorders are associated with dopamine function. Not sure if that's what you mean by crawling bug sensations. Was just reading about Requip for bruxism.
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).

#39 Skyler

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Posted 18 June 2012 - 03:44 AM

I *think* "neuroendocrine" or "CNS" somehow accounts for just about anything aside from obvious fractures or injuries.

RLS, bruxism, movement disorders are associated with dopamine function. Not sure if that's what you mean by crawling bug sensations. Was just reading about Requip for bruxism.


Hi Barb, I'm concerned here with the way withdrawal symptoms are experienced subjectively.. as when they ebb and flow. I'm thinking that with neuroemotions, there are two overarching patterns.. the daily fluctuations caused by cortisol (neuroendocrine), and the larger ebb and flow that is conditioned by the activity of the CNS? I'm trying to understand if the patterns of windows and waves (frequency, severity) are similar across the subjective experience of those waves that effect both neuroemotion and 'physical' symptoms such as tinnitus. My apology is this is convoluted.

In particular.. and at the risk of confusing matters.. the waves of tinnitus I'm having this morning have changed in character. From loud to faint, piercing to ringing.. the amplitude and frequency which used to recycle once every few days is now changing a few times in an hour. This is hopefully a sign that tinnitus is starting to leave me, but to be honest, while reassuring, it's also unnerving! Posted Image

And I'd like to use this experience to understand those who experience neuoremotion. I've had some exposure to cortisol induced feelings, but while the time of day was more pronounced for morning, there were no windows or waves, and when the 4 initial days following a cut passed, they stopped, and I don't think this is usually what people refer to when talking about ebbs and surges over the course of weeks or months.~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

 

 


#40 Altostrata

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Posted 18 June 2012 - 11:18 AM

You have your regular biological cycles, daily, monthly, seasonally, etc. And then there are the waves from withdrawal syndrome. Withdrawal syndrome can exacerbate some normal cycles, ex. early morning cortisol, menstrual symptoms, or seasonal sadness. Waves from withdrawal syndrome can also come out of the blue and have no apparent relationship to any other biological pattern. Have you been tracking the tinnitus? Does it follow a pattern?
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.

#41 Skyler

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Posted 18 June 2012 - 11:43 AM

You have your regular biological cycles, daily, monthly, seasonally, etc.

And then there are the waves from withdrawal syndrome. Withdrawal syndrome can exacerbate some normal cycles, ex. early morning cortisol, menstrual symptoms, or seasonal sadness.

Waves from withdrawal syndrome can also come out of the blue and have no apparent relationship to any other biological pattern.

Have you been tracking the tinnitus? Does it follow a pattern?

It's like a healing pattern (whatever that means), superimposed over a daily pattern that is worse in the AM and better in the evening, and involves a small uptick at the end of each TID dose. The overarching wave pattern followed days .. now hours as it slowly ebbs. Right now I'm just biding time, hoping they all wash out to sea. Posted Image

Thanks for responding ~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

 

 


#42 Altostrata

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Posted 18 June 2012 - 12:12 PM

Yes, that makes sense. Many of us have worse symptoms in the early part of the day (naturally higher cortisol) than in the evening (naturally lower cortisol).
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.

#43 Skyler

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Posted 18 June 2012 - 12:30 PM

Yes, that makes sense. Many of us have worse symptoms in the early part of the day (naturally higher cortisol) than in the evening (naturally lower cortisol).


Huh.. so cortisol would make tinnitus worse as well. That has been my confusion, I thought cortisol would only make neuro emotions worse, that it was more for the emotional part of withdrawal, and physical (like the emotional symptoms are not also physical, but I'm talking about the physical that is not involved in emotions) would not be effected.

I gave up caffeine for a short while, but really could not tell if there was any difference.. so I 'reinstated.' Hope that was okay, again, I did check it out! Ouch Posted Image

Barb, thanks for giving this a go, I just needed to tease the two apart, and now I see!

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

 

 


#44 Altostrata

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Posted 18 June 2012 - 01:06 PM

No, cortisol revs up body functions like heart rate, blood pressure, muscle tension, etc.
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.

#45 Barbarannamated

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Posted 18 June 2012 - 01:31 PM

I'm fairly certain cortisol could put a man on the moon~ ;) I didn't know for certain, Schuyler, and "neuroendocrine" is my all-encompassing explanation for whatever the body does. I did brief search on "tinnitus + cortisol" and got many hits, some say lower cortisol ---> tinnitus, others say higher cortisol ---> tinnitus. It would explain the diurnal pattern. Here's one lay article: http://ezinearticles...itus&id=1444705
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).

#46 Skyler

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Posted 18 June 2012 - 02:13 PM

I'm fairly certain cortisol could put a man on the moon~ ;)

I didn't know for certain, Schuyler, and "neuroendocrine" is my all-encompassing explanation for whatever the body does. I did brief search on "tinnitus + cortisol" and got many hits, some say lower cortisol ---> tinnitus, others say higher cortisol ---> tinnitus. It would explain the diurnal pattern. Here's one lay article:

http://ezinearticles...itus&id=1444705


Thanks, for the article and for your understanding. Hmm, you know it's serious when people are advertising a treatment because it can make the problem 'go awayyy'. As in for a lot of folks, it does not. I'm hoping my number is not among them. ~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

 

 


#47 Sally3

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Posted 27 June 2012 - 01:09 PM

I am just wondering about windows....can anyone give a good definition of what is happening during a window? And does it mean that is how we will be when healed? I get a window for a day and feel good - no anxiety,no depression, little or no shaking...but then get slammed the next day and feel like I will never recover. Does a window indicate that we CAN be healed, that how we feel in a window is really our true selves and that is how we will feel when we are healed? I am glad I get windows but they just do not last long and I get so discouraged when I go into a wave and it feels as if I will never ever heal. Thanks Sally3

Have been on .125Klonopin for 17 years....was tapered off rapidly (3 weeks)from a 6 week updose of 1.50 K....went back on .125 K and tapered off there in 3 weeks - September 7 2010...horrible w/d sx. Have been suffering ever since, although do get windows.
Was put on 20 mg Prozac back in 1993 also...no issues ever with the prozac. Was told last summer to get off the Prozac by a psychiatrist who thought that my benzo w/d was really due to the Prozac i.e., jitteriness, shaking, nervous, anxiety and depression. He wanted me off in 3 months. I started decreasing 1 mg per months - am now down to 9 mg Prozac....feel like I have been tapering incorrectly.

 

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#48 Altostrata

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Posted 27 June 2012 - 03:49 PM

Hi, Sally. I attached your post to this very interesting topic about waves and windows. I believe your questions are answered above.
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.

#49 fefesmom

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Posted 29 June 2012 - 09:28 AM

This is such a helpful topic; thanks Alto for mentioning it. I have to realize that after about 13 years on ads it does make sense that it can take a long (longer than 9 months) time for me and my brain to adjust to living ad free. Thanks all. FM

#50 Jemima

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Posted 29 June 2012 - 02:15 PM

Thanks, for the article and for your understanding. Hmm, you know it's serious when people are advertising a treatment because it can make the problem 'go awayyy'. As in for a lot of folks, it does not. I'm hoping my number is not among them. ~S


I had tinnitus before I ever took an AD, largely due to allergies. Now that I'm almost past the Cortisol instability, the loud, upsetting tinnitus from Lexapro has all but faded away. If anything, I think the chronic tinnitus is better, probably due to my cutting out dairy products which, in some medical circles, are blamed for allergies. (There may be something to this since I'm currently not suffering, and sneeze maybe four times a day. Time will tell.)

In my experience, when the Cortisol level was up in the mornings, the tinnitus was, too. Both would die down beginning around one in the afternoon and then start to come back around 9:30 p.m. It's a horrible combination. Just when you're the most sensitive to light and noise, the tinnitus is there aggravating one's anxiety, which no doubt drives the Cortisol up even further.

In my opinion, if you didn't already have tinnitus from some cause other than psychotropic drugs, it will likely go away altogether when your body has healed.

Psychotropic drug history: Pristiq 50 mg. (mid-September 2010 through February 2011), Remeron (mid-September 2010 through January 2011), Lexapro 10 mg. (mid-February 2011 through mid-December 2011), Lorazepam (Ativan) 1 mg. as needed mid-September 2010 through early March 2012

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Please note that I am not a medical professional and my advice is based on personal experience, reading, and anecdotal information posted by other sufferers.

 


#51 Skyler

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Posted 29 June 2012 - 03:56 PM


I had tinnitus before I ever took an AD, largely due to allergies. Now that I'm almost past the Cortisol instability, the loud, upsetting tinnitus from Lexapro has all but faded away.


So much I know tinnitus.. I did not realize they were caused by allergies. I'm glad the AD part is going away for you as well.. you must be very relieved.

In my experience, when the Cortisol level was up in the mornings, the tinnitus was, too. Both would die down beginning around one in the afternoon and then start to come back around 9:30 p.m. It's a horrible combination. Just when you're the most sensitive to light and noise, the tinnitus is there aggravating one's anxiety, which no doubt drives the Cortisol up even further.


This is what makes me curious, mine is exactly the opposite.. it starts in around 1PM, and then starts to get better around 9:30 PM. This is what led me to look at Requip as a potential cause (it is/was), but that cause has been addressed, and still the pattern is still topsy turvy.

In my opinion, if you didn't already have tinnitus from some cause other than psychotropic drugs, it will likely go away altogether when your body has healed.

I sure hope so.. prolem is, I'm very possibly looking at 2 to 3 years of tapering yet. Ugh Thanks for your input. ~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

 

 


#52 starlitegirlx

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Posted 30 August 2012 - 05:29 PM

I know this is an older thread, but I wanted to say that I've been going through this and can see it in my journal as I track my days of symptom severity and klonopin use to offset symptoms (Might not be recommended but I'd be dead without it). I've been through this cycle so many times, and I have a theory that it's a healing process where our body is adapting and adjusting to not having the meds and that's where the pain or worse hellish days come into play, and then we feel better for a bit until our body has found a new way to heal and recover which triggers the pain/suffering cycle again.

I think of it as our body trying to find its way back home to how it should be after being nearly totally altered by these meds. On a bad day or a bad few days I think I try to remind myself that this is my body adapting and healing and it will find its way. Those better days are proof that it has though for some it takes a while to get to them and they may only last a short bit.

I remember reading something a while ago about how the body knows how to heal itself from just about anything. But often we interfere with that or things interfere with it (things like stress or other meds or other health issues that compound one another). I like the idea of trusting in my body and believing that it knows how to find its way back to its wellness.

Bad days are awful but if they mean my body is going through some kind of adaption as it heals, I feel they are worth enduring. Like when you are tired and just want to go home, traffic and bad weather slow you down and can frustrate you endlessly because you JUST WANT TO BE HOME, but those things pass. They are temporary and you will get home eventually. So accepting the traffic and bad weather as par for the course makes the journey home a whole lot better and easier on you emotionally and stress wise. simple analogy that is weak compared to what we deal with during these cycles, but at its essence it holds the truth of what is happening. Storms and delays when we just want to be home (be well again).

Edited by Petu, 16 January 2014 - 11:12 PM.
fixed text


#53 areyouthere

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Posted 30 August 2012 - 06:02 PM

I like the idea of trusting in my body and believing that it knows how to find its way back to its wellness. Bad days are awful but if they mean my body is going through some kind of adaption as it heals, I feel they are worth enduring. Like when you are tired and just want to go home, traffic and bad weather slow you down and can frustrate you endlessly because you JUST WANT TO BE HOME, but those things pass. They are temporary and you will get home eventually. So accepting the traffic and bad weather as par for the course makes the journey home a whole lot better and easier on you emotionally and stress wise. simple analogy that is weak compared to what we deal with during these cycles, but at its essence it holds the truth of what is happening. Storms and delays when we just want to be home (be well again).

I love this analogy Star! It's a great way to look at it. Thanks for posting it....
Fall 1995 xanax, zoloft. switched to Serzone
1996- spring 2003serzone/ xanax/ lightbox.
b]Fall 2003- Fall 2004? Lexapro 10 mg. Light box /4 mg. xanax.[/b]
2004 - Fall of 2009 10 mg Lex, 150 mg Wellbutrin XL % 4 mg xanax
November 2009- Sept. 2011 10 mg lex., 300 Well. XL, 4 mg Xanax [/b
Sept.2012- July 2012 20 mg Lex 300 Well. XL, 4 mg Xanax
My mantra " go slow & with the flow "
3/2/13.. Began equal dosing 5 Xs /day xanax, while simultaneously incorporating a 2.5 % drop ( from 3.5 mg/day to 3.4 mg/day)

4/6/13 dropped from 300 mg. Wellbutrin XL to 150 mg. Difficult but DONE! Down to 3.3 mg xanax/ day / 6/10/13 3 mg xanax/day; 7/15/2013 2.88mg xanax/day.
10/ 1/2013...... 2.5 mg xanax… ( switched to tablets again) WOO HOO!!!!!! Holding here… cont. with Lexapro.
1/ 2/2014.. tapered to 18mg ( by weight) of a 26 mg ( by weight) pill of 20 mg tab. lexapro. goal is 13mg (by weight OR 10 mg by ingredient content) and STOPPED. Feeling very down with unbalanced, unpredictable WD symptoms.
1/2/2014- ??? Taking a brain-healing break from tapering anything after actively tapering something for 1.5 years. So… daily doses as of 2/2/2014: 18 mg by weight Lex, 150 mg Well. XL, 2.5 mg xanax, down from 26 mg by weight Lex., 300 mg well. XL, 4 mg xanax in August, 2012. I'll take it. :) 5/8/14 started equivalent dose liquid./ tabs. 5/13/14 1.5 % cut.

#54 Nadia

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Posted 01 September 2012 - 08:53 AM

So accepting the traffic and bad weather as par for the course makes the journey home a whole lot better and easier on you emotionally and stress wise. simple analogy that is weak compared to what we deal with during these cycles, but at its essence it holds the truth of what is happening. Storms and delays when we just want to be home (be well again).


First, thanks for reviving this thread. I had not seen most of the stuff on the first page from last year (before the waves and windows topics were merged), and it is somehow comforting to read this... while at the same time scary to think that I'm probably headed for years more of it. But the description someone gave of this getting gradually better, but with dips, and the ever-mutating variations in combinations of symptoms (now some tinnitus with dizziness but no back pain, then some anhedonia and exhaustion but with no dizziness, etc.), is exactly how it's been for me. So I'm going to try to concentrate on the general pattern of "up"... trust that if I had a window of feeling OK a while back, that it is somehow "in me" to get there again under the right circumstances or when my body is ready.

I guess in my moments of panic (in the mornings mostly, or when under stress), I start really worrying that I have to DO something to create more windows. I start feeling like a caged animal, pacing the cage, thinking, "if you just did the right thing, you could get out of here! You are being 'punished' for not doing what you know you should be doing! (Find the right level of stress, change careers, get out of a relationship, have a child, move to a different place... whatever)." But life stresses cannot be helped. People die, you get into car accidents, there is traffic, people depend on you, etc. So I like what you say about acceptance. I keep on coming back to that after a period of extreme disappointment and depression when I go from a window to a wave!

It is such a fine balance of knowing when to act and when to accept. That is why the serenity prayer is so damn right on!

'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.


#55 Nadia

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Posted 01 September 2012 - 09:26 AM

Oh... one other thing about the windows. I think for people around me who are skeptical of withdrawal, seeing me in a window just reinforces their thought that it's all just "psychological" and "in my head". Sometime I can feel that way, too. Like, wow, if I CAN feel normal now, why can't I always? It doesn't help that all my really good windows have been when I have been away from my regular life. I don't think it's a coincidence, I think it has to do with stress level, but it can also seem like it is just that I'm unhappy and the rest is psychosomatic. The truth is probably somewhere in between, because, obviously, having something to feel happy and positive about is a huge factor in healing (with ANY illness or condition).

'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.


#56 Narcissus

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Posted 11 November 2012 - 09:42 PM

This thread has been a great comfort for me during the past few weeks. Thank you all.
3 Years 150 mgs Effexor
2 month taper down to zero
3 terrible weeks at zero
Back up to 75 mgs
2 months at 75
6 or so months back to regular dose of 150 - was able to restabilize fine.
3 month taper back to zero
1 HORRENDOUS week at zero
2 days back up to 37.5
3 days back up to 75
One week at 150 - unable to stabilize.
Back down to 75 mgs
At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

#57 Narcissus

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Posted 23 November 2012 - 11:30 PM

After about two weeks of recording my moods and symptoms I've noticed an interesting correlation. One of the things I recorded was the level of 'strain' experienced each day. What I mean by this is that indescribable feeling of mounting tension (often accompanied by panic or anxiety) in the mind/body. This is the main 'effect' I associate with withdrawal. I also recorded my daily mood. It seems that on days where my level of 'strain' was highest, days where I felt most dramatically affected by withdrawal, were the days I also experienced the highest level of mood. One of the things that I should note was that on these days I experienced a high level of fluctuation in mood/symptoms as well. So the pattern seems to be (at least so far) a day or two of high 'strain', during which moments of both high mood and terrible agitation are experienced, and then a four or five day period where both mood and 'strain' are relatively low, and very little joy is experienced. During these low periods I feel the most hopeless, and I have this sense of there being a a sort of 'void' in my head. A simpler way to put this would be, I seem to be alternate between brief and intense periods of some kind of excess (neurological?) followed by longer and in some ways more difficult periods of deficiency/depletion. What do people make of this? Has anyone noted a similar pattern?
3 Years 150 mgs Effexor
2 month taper down to zero
3 terrible weeks at zero
Back up to 75 mgs
2 months at 75
6 or so months back to regular dose of 150 - was able to restabilize fine.
3 month taper back to zero
1 HORRENDOUS week at zero
2 days back up to 37.5
3 days back up to 75
One week at 150 - unable to stabilize.
Back down to 75 mgs
At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

#58 Shanti

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Posted 24 November 2012 - 04:50 AM

For some reason, insomnia has never been an issue for my antidepressant or benzo withdrawal. I'm not here to brag. But I just wanted to say this so that people know it's not like that for everyone, and maybe they'll get lucky like me. I know that anxiety can cause insomnia as well as the w/d.
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

#59 Barbarannamated

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Posted 24 November 2012 - 08:56 AM

So the pattern seems to be (at least so far) a day or two of high 'strain', during which moments of both high mood and terrible agitation are experienced, and then a four or five day period where both mood and 'strain' are relatively low, and very little joy is experienced. During these low periods I feel the most hopeless, and I have this sense of there being a a sort of 'void' in my head.

A simpler way to put this would be, I seem to be alternate between brief and intense periods of some kind of excess (neurological?) followed by longer and in some ways more difficult periods of deficiency/depletion.

What do people make of this? Has anyone noted a similar pattern?


I hesitate to compare my case to others because I have overlapping medical disorders involving cortisol/adrenals, but your description resonated with me.

I am about 18 months post Pristiq (NOT a careful taper). The first several months during taper and 3-4 post taper were a state of 'excess' energy, both mental and physical: anxiety, akathisia, hypomania, early morning awakenings and needing little sleep, heart racing, need to be on-the-go even when I had nowhere to be, anger outbursts, etc.

At about 3-4 months after last dose, the morning panic/anxiety began to morph into absolute dread of VOID of life. I recognize now that dread is a form of anxiety. I was forced to retire (medical) when I was 39 and the full impact of that hit me only when off of Pristiq, 11 years later. Deficiency, depletion, dread.. all very prominent feelings for the past year along with very low energy, a void of thoughts or activity in my head, and complete HOPELESSNESS. It's far worse in the morning until early afternoon and I feel almost normal by evening although I start to get anxious about the dread of morning. The diurnal pattern is so strong that Ive had difficulty recognizing any waves or windows aside from shift from excess state to deficient state (good wording!).

I don't have the usual 'strains' or pressures that most people have, so I can't speak to that. However, 'freedom' / emptiness can create its own anxiety. Your correlation of void, deficiency, and hopelessness struck me. Thank you.
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).

#60 Altostrata

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Posted 24 November 2012 - 11:18 AM

pgd, those are very well-observed symptoms. I agree with Barb, you might be tracing your own periods of high cortisol. It is stimulating. Then, when it's a bit lower, you are experiencing numbness that will gradually diminish as your nervous system heals.
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

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#61 Narcissus

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Posted 25 November 2012 - 12:14 AM

Alto, that makes sense. What role do we think cortisol might have in our ability to feel certain emotions? Obviously it raises stress/anxiety, but might it be a part of our ability to feel joy as well? Barbara, it breaks my heart that these effects have been so long term for you. But I'm glad you were able to relate to some of my experience. I've definitely noticed a positive trend underneath all the ups and downs, and I hope that you have as well, although I'm sure it's harder when the patterns are so drawn out.
3 Years 150 mgs Effexor
2 month taper down to zero
3 terrible weeks at zero
Back up to 75 mgs
2 months at 75
6 or so months back to regular dose of 150 - was able to restabilize fine.
3 month taper back to zero
1 HORRENDOUS week at zero
2 days back up to 37.5
3 days back up to 75
One week at 150 - unable to stabilize.
Back down to 75 mgs
At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

#62 Altostrata

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Posted 25 November 2012 - 01:34 PM

Cortisol is necessary for all our daily functions and alertness. Our bodies need just the right amount. Too little (usually from a disease, such as Addison's) and many systems don't work correctly, see http://www.livestron...iency-symptoms/ Cortisol is naturally produced to mobilize us in times of stress. Then it's supposed to quickly break down and allow us to relax. Excess cortisol produced over a long period is wearing on the body. It can contribute to anxiety, depression, or rage. An extreme effect of too much cortisol is seen in Cushing's syndrome.
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.

#63 Narcissus

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Posted 25 November 2012 - 02:18 PM

Interesting. Thanks for the info.
3 Years 150 mgs Effexor
2 month taper down to zero
3 terrible weeks at zero
Back up to 75 mgs
2 months at 75
6 or so months back to regular dose of 150 - was able to restabilize fine.
3 month taper back to zero
1 HORRENDOUS week at zero
2 days back up to 37.5
3 days back up to 75
One week at 150 - unable to stabilize.
Back down to 75 mgs
At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

#64 Jemima

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Posted 29 November 2012 - 11:25 AM

Bumping an important topic for the newcomers.

Psychotropic drug history: Pristiq 50 mg. (mid-September 2010 through February 2011), Remeron (mid-September 2010 through January 2011), Lexapro 10 mg. (mid-February 2011 through mid-December 2011), Lorazepam (Ativan) 1 mg. as needed mid-September 2010 through early March 2012

"Never attribute to malice that which is adequately explained by stupidity." -Hanlon's Razor


Introduction: http://survivinganti...oducing-jemima/

 

Success Story: http://survivinganti...r-dickhead-too/

Please note that I am not a medical professional and my advice is based on personal experience, reading, and anecdotal information posted by other sufferers.

 


#65 starlitegirlx

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Posted 04 December 2012 - 06:47 PM

I just now took the time to read through this thread and I'm so glad it's here. I have the window/wanes cycle which is akin to hell when you have a window then hit a wane. It's really hard to not get emotionally knocked for a loop particularly if it's a bad wane after a comforting window.

I love the term WINDOW because when I think of it, I think of looking out and seeing beauty and bright skies and the sun and nature. It's hopeful. Wanes remind me of when the moon is going from full (waning cycle) to new again, the sky gets darker at night and has an ominous foreboding feeling.

With regards to the cycles, I'm reminded of when I broke my leg a decade ago. When I was recovering, I would have good days and bad ones. I had to be cautious as to what I did but that wasn't really a determined trigger. It just seemed that some days my leg would hurt so fiercely to the point I wondered if it was ever going to fully recover. Then that would pass and it would feel better. It was a lot like this only it was specific to my leg. The same thing happened when I was recovering from Lichen Planus - an autoimmune disease that was triggered by three years of prolonged stress. It was horribly bad to the point that sleep was the only way I could escape the pain of it (burning, stinging, sharp pain).

I documented my symptoms and different triggers and which treatments helped when and whatnot and what I discovered when I looked back over the months I had documented (didn't start documenting till about two or three months into it) was that there were these same cycles.

The lichen support group I was part of called them FLARES. You would feel better, the burning, pain etc would be gone or tolerable to whatever your threshold was and then it would flare up. External and internal things could trigger flares. But the cycles were very much there as I was looking through the book. There would be windows and then wanes, over time the windows got larger and the wanes got smaller. That was a bit more linear but there was still irregularity in them which scared me because I thought I would never heal or it would never go away.

Happy to report that I'm better from both things now. The reason I shared all this is because I think that maybe we're focusing our lens too much on withdrawal and recovery specifically and doing that can scare us a little more because what we're going through is not like recovering from a broken foot. The closest I came to dread fear of never recovering was with the lichen planus. Those cycles scared me but also that I had any good days were things I took comfort in only with this it isn't like that.

It's hard to take comfort in the windows of our recovery when a wane hits because it affects us in so many ways - neuro emotions alone can really send us into a downward spiral while trying to endure the wanes. However, from a body healing recovery mechanism that I'm referring to my own personal experiences from (heck even when I had PTSD decades ago there were windows and wanes), I think this is something we should take as a true sign of recovery even if it is not as smooth and linear as we would like.

My experience has shown me that recoveries rarely are. I think it has to do with how the body has to adapt to a new status quo. In fact, that's my theory on it. Any healing at all is like a change, and now the body has a new status quo. So maybe this new status quo throws the workings of our systems off balance and that's why we have wanes. It's like the body saying 'wait, this is different than it was. Adjust! Adjust! Adjust!' and as it adjusts to the new status quo we have the suffering effect we call wanes. Those adjustments are probably a lot like system stressors, and we all know how sensitive we are to stressors. The body has to adapt to the changes and adapting to them is not easy but probably quite the feat.

I think it's also why the windows get longer as we progress and have healed more - because the the adjustments need to made are less because we are closing in on our original normal and the healing isn't as dramatic because we're closer to a full recovery, kind of like how a cut stings, then the scab forms and it hurts and then when it's the scab with new skin underneath it tends to itch. That's a healing cycle. At the end, the itch is minor like some people who are further into recovery from the meds have less dramatic and shorter wanes. They're more like an itch than the burning or stinging when you first got the cut and it began healing.

Sorry this was so long. I was just thinking through it and wanted to share my experience with some recoveries (particularly the lichen planus because that was one I thought I would never recover from, had a crappy prognosis for recovery, and windows and wanes like this) to maybe give some hope and even a way to look at it in terms of the bigger picture body recovery wise than specifically focused on withdrawal recovery since withdrawal recovery has very little information to help us understand it and to give us hope.

I think the window/wane cycle applies to most healing cycles our body goes through but we perhaps notice them far less since withdrawal recovery is pretty horrific for most of us. But from my experience with other healing, I think the pattern is there and holds fairly true to form regarding other types of healing the body goes through, if not all.

Edited by Petu, 16 January 2014 - 11:25 PM.
fixed text


#66 Narcissus

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Posted 07 December 2012 - 11:27 PM

^Interesting, starlitegirl. I find it comforting that recovery from physical injuries also follows the sort of ebb and flow pattern. I have not had any major injuries so that was new to me. Thanks for sharing.
3 Years 150 mgs Effexor
2 month taper down to zero
3 terrible weeks at zero
Back up to 75 mgs
2 months at 75
6 or so months back to regular dose of 150 - was able to restabilize fine.
3 month taper back to zero
1 HORRENDOUS week at zero
2 days back up to 37.5
3 days back up to 75
One week at 150 - unable to stabilize.
Back down to 75 mgs
At 75 mgs (half original dose) and suffering withdrawal symptoms since October 2012.

"It is a radical cure for all pessimism to become ill, to remain ill for a good while, and then grow well for a still longer period." - Nietzsche

#67 aberdeen

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Posted 18 December 2012 - 09:20 PM

I LOVE this. It's so true, and so on board with so many peoples experiences with withdrawal. It helps to imagine the healing that must be going on while you're in a bad spot.

2 Timothy 1-7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

Effexor 75mg to 262.5mg 2005-2010 for post partum depression

Started having poop out mid 2010, also switched generic brands, then crashed in Dec 2010 (anxiety/ "terror", intense DR, anhedonia, suicidal ideation, chills, insomnia, horrible intrusive thoughts, disorientation, ect)
Tapered to 0mg in 3 months tried Celexa,Cipralex, then Paxil (this switching made things worse and added akathesia)

Found online support and started tapering Paxil 7 months after quitting Effexor (at this point was having small windows).

Paxil taper: dropped 10% every 4-8 weeks

Year 1 October 2011 to Nov 2012 20mg to 10mg

Year 2 March 2013 to Feb 2014 10mg to 4mg

Year 3 April 2014 to May 2015 4mg to 1.1mg

Year 4 June 2015 1.1mg , dropping by 10% until .5mg, after then dropped by 0.1mg every 5 weeks until 0.1mg.

Finished! Official last dose of 0.1mg on June 15/16


#68 starlitegirlx

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Posted 02 January 2013 - 03:22 PM

I truly think it is. Even emotional recovery from PTSD after an assault or trauma. There were windows and wanes. Same pattern. Totally psychologically based with physiological aspects. Just as with my broken leg and the lichens. I think it's just the process of the body. It can even be noted in weight loss. People hit a plateau. They get pissed because they want to keep losing the weight, but what if it's the body's way of adapting. I'm not sure if it would fall into a window and wane cycle precisely. I'd have to think more in depth about it, but it is a hold from what the body perceives as a threat since weight loss 50 or more years ago could very easily have meant survival was now in jeopardy. I think this is the norm, these windows and wanes. In some cases they are very notable. In others, barely noted. But they appear to be the norm from my experience. So I just take it all in stride and sometimes think back to the PTSD or lichens recovery, how there were these same cycles. In the end, I recovered and was well again. The windows get longer and the wanes disappear.

#69 RebelMaven

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Posted 02 January 2013 - 05:23 PM

If I can truly believe the pit of despair I have fallen in is just a wave and it will only last for a window, and the waves will get weaker and the windows smaller, then there is hope. It has only been a few months since I'm off years of the drugs. I was expecting too much too soon. If I can just make it through the mornings which are the worst usually. Thank you for this thread. Thank you for hope.

#70 Barbarannamated

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Posted 02 January 2013 - 05:39 PM

If I can truly believe the pit of despair I have fallen in is just a wave and it will only last for a window, and the waves will get weaker and the windows smaller, then there is hope.

It has only been a few months since I'm off years of the drugs. I was expecting too much too soon.

If I can just make it through the mornings which are the worst usually.


RM,

Mornings are sheer HELL for me right now. Not anxiety like in earlier months, but an overwhelming dread of life, a depression unlike any I've experienced. For me, this is far worse than the anxious, heart pounding, panic-filled cortisol mornings.
I suspect it's a variation on the same mechanism.
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).

#71 RebelMaven

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Posted 02 January 2013 - 05:54 PM

Barb: I'm so sorry. I know how awful this is. I try to avoid waking up at all costs. Last winter during the Serotonin Discontinuation Syndrome it was an anxious hysterical startling response waking up and screaming that I wanted to die. I just could not bear being awake in a state of panic. This winter it is more like a horrid dread that I don't have the strength to get up and go to the bathroom let alone face another day in this depressed state. Like dread of my very existence. It is a long day when you are not functional enough to do anything, ache from laying down all the time, and are left alone with only your mind to torment you. Yes, variation on the same theme sounds reasonable. Horrible as this is, I can't help but wonder if biochemically it is an "improvement" of sorts though. Perhaps sheer exhaustion and dread are a better state than terror and panic? Hang in there.

#72 Barbarannamated

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Posted 02 January 2013 - 06:37 PM

For me, the anxiety awakenings weren't as bad. I didn't have the desire to die and emotional symptoms as some do. It was startling but oddly energizing. I don't know when it transformed to this horrid depression, but may have been when i went on hydrocortisone for adrenals. I've since DCd it and mornings got slightly better for awhile. Seems worse again. Lots of stressors involved, too. I read of someone adjusting their sleep to the daytime to avoid waking to the cortisol surge. Not sure if it's wise to mess with sleep cycle, but mornings are downright frightening.
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).