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MNgal1960: need to get off of 3 meds


MNgal1960

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I have looked over my notes and seen neuropathy worsening during this very slow Q taper. Maybe I need to hold. I am using a mega syringe to pull and pitch my Q. It has weird markings. Total is 60ml with every 10ml marked and then the 10ml divided into 4. So I think it is 0ml-2.5ml-5ml-7.5ml-10ml. I was trying to slow down by marking the syringe myself halfway between the real marks.

 

Doing 2 pulls. One pull is 50ml and one pull is at a mark I made on the syringe just above 17.5ml.

 

I have decided I need to hold until this neuropathy settles down. I think I'd better back-step to an actual mark on the syringe rather than use this odd mark I made myself, so I am going back to pulling and pitching 67.5ml (out of 200ml). Each tablet is 25mg. So how much Q am I actually taking? I guess around 16.5ml? Is that right? My math skills have really gone downhill with these drugs and this taper. :(

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To determine how much active ingredient you're getting, we need to know how you make the liquid: the tablet dose and the volume of water.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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Yes, duh! I am such a benzo brain.

 

I put a 25mg tablet (crushed) of Seroquel into 200ml of water and shake. Then I pull out and pitch 67.5 ml (oddly, the syringe is marked at 10ml and quarters of 10ml rather than even ml). Then I drink the rest.

 

A curious thing about the Q is that if I let the liquid sit for even 15 minutes it gets a very foul smell. The longer it sits, the worse it smells. So I make and drink each dose right when I take it.

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I put a 25mg tablet (crushed) of Seroquel into 200ml of water and shake. Then I pull out and pitch 67.5 ml (oddly, the syringe is marked at 10ml and quarters of 10ml rather than even ml). Then I drink the rest.

 

25 mg tablet in 200 ml water results in a solution where

  • 8 ml liquid = 1 mg Seroquel or
  • 10 ml water = 1.25 mg Seroquel

 

If you are removing and discarding 67.5 ml, the dose in the remaining solution (132.5 ml) is 16.56 mg.

 

Your math and mine agree.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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:D So my brain still partially works!

 

Wanted to get to half the tablet, but really can't go any further right now. I hope I am safe from the nasty side effects of Seroquel at 16.56 mg. Actually I am already getting a cataract, but at least that's fixable.

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  • 2 weeks later...

I am prescribed 5mg tablets and am the world's worst pill cutter. (This may have contributed to my first disaster attempt at tapering.)

 

I am planning to switch to liquefying my dose. In general, when a person switches from tablets to liquid, do they wait awhile after the switch before starting to taper? If so, how long?

 

My doctor is not in favor of a taper, so I am stuck with the script I have. Can't get smaller tablets. Can't get liquid. Have to do this myself. So, it will be a homemade liquid.

 

Thanks.

 

MN

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MNgal, I've moved your post about making a liquid to your Introduction topic.

To answer your question, because switching to liquid formulation is a change, it's best to keep your dose the same and treat the switch as you would a dose reduction. Make the switch and then observe your symptoms as you hold for several weeks.

For reference here's our topic on making a liquid:

Making a liquid from a tablet or capsules
 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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Switching from tablets to liquid, I assume should be done slowly. Liquefied my first dose. How long to wait before liquefying another dose and another dose? Want all doses liquefied before stating to make cuts.

 

BTW, doc is not cooperative and doesn't know I'm tapering. Will only prescribe 5mg tablets 3x/day, so need to liquefy each entire dose. If I could get smaller, I would only liquefy part of each dose, but I'm stuck with what I'm stuck with.

 

MN

Edited by scallywag
merged topic
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Do you take the medication 3x/day, as doctor has prescribed, or some other timing? Have you ever tried 2x/day dosing?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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I'm taking it 3x/day because of the way my doctor prescribes. It is actually simpler this way because then I am taking the V and the G at the same time. I am in such a cog fog and have so much fatigue lately I don't dare try to change the dosing schedule. Feel like I'm falling back into depression. :(

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Re: restless legs - my Mom just sent me one of her "pop medical articles" that says lots of people swear by putting a bar of soap between the sheets, at the foot of the bed - or - rubbing the bar over the legs before bed - or even, just, taking a soapy shower before bed.  OK, there's not double-blind placebo study on it - but - how much harm could it do?  Anecdotes prefer lavender scent, but that doesn't seem to be the key piece in the "soap in the bed" trick, so any scent will do.

 

 

 

May I weigh in on this.  I have had a kind of restless leg problem for some time.  For me it manifests itself as a cramping of the arches in my feet.  I have used foot straps to help with this, but they don't work well.  

 

I had read the anecdotes elsewhere about using a bar of soap and decided to try it.  I took a bar of Irish Spring and used a knife to slice it into several pieces.  I put the pieces in an old sock and made a knot in the end of the sock to keep the soap pieces in. I am placing this between my feet in the bed at night.  So far it seems to be working very well.  I have much less tendency to move my feet, and am sleeping better.  

 

The theory is that the volatile oils which give the soap its fragrance will permeate the skin and 'relax' the arch.  I also read that it loses its effect after a while and the soap needs to be renewed (or perhaps re broken).  

 

I have been using this for about a week and so far so good.  Just one person's experience.  Will try to update this after more time has passed to see if it continues to work.  I like it.  

1989 -1995: Nortriptlyline, then Zoloft.  1997: New psych Dr. T; ‘Weaned’ off Zoloft; medication carousel next 3 years. 

1998-1999: Open heart surgery; divorce; prostate cancer treatment.

1999-2001:  Horrible period, new psych Dr. B; hospitalizations, ECT; medication carousel: Paxil, Zyprexa, Lithobid, Depakote, Wellbutrin, Effexor, Nortriptyline, Lamictal, Serzone, Seroquel (what a mess).

January 2001, new psych Dr. R, whom I have been with ever since.  He saved my life after a long period of experimentation. Seroquel as high as 600mg; added Remeron & Paxil.

Stable last several years: Quetiapine 75mg, Mirtazapine 45mg, Paroxetine 30 mg, Clorazepate 3.75mg, L-methylfolate (Deplin) 15mg

2015: Weaned off of Quetiapine completely over several months; no problems.   

Paroxetine: 10/6/2015 - 30mg -> 20mg; 11/24/2015 - 20mg -> 15mg; 12/14/2015 -15mg -> 10mg; 1/29/2016 -10mg -> 5mg; 2/25/2016 5mg -> zero.  All under psychiatrist supervision. No ill effects seen so far as of 12/22/2016.   Continuing Mirtazapine and L-methylfolate.  

I have lost about 22 lbs. (207->185) over the last year or so; probably Paroxetine discontinuation (leptin effect). 

 

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Neuropathy is getting bad again. Maybe I should have waited longer after my Q partial taper. I hate being stuck in the house not even able to put on normal clothes.

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I'm taking it 3x/day because of the way my doctor prescribes. It is actually simpler this way because then I am taking the V and the G at the same time. I am in such a cog fog and have so much fatigue lately I don't dare try to change the dosing schedule. Feel like I'm falling back into depression. :(

 

Thanks for the detail. I was thinking that 2/day dosing might make it easier to use combine one of your existing 5 mg tablets + 2.5 mg as liquid dose. Turns out that was a good idea ... for someone else. ;)

 

Sorry you're turning a corner into a not-nice symptom neighbourhood. Be gentle with yourself.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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MNGal, I'm concerned about your pain.

 

What are your plans for coping with your pain as your doses get down?

 

Tylenol?  Oxycontin?  Fentanyl?  Aspirin?  Willow bark tea?  Icy hot?  Wheat packs?  Yoga?  tai chi?  Or just grit and bear it? (that doesn't really sound like a good option).

 

I don't have an answer, but I encourage you to be looking at your non-drug options.  I think I posted some early on, but I'll review them for you:

Non-Drug Techniques for Dealing wth Physical Pain

http://survivingantidepressants.org/index.php?/topic/4482-what-to-do-for-painwhen-you-cant-take-meds/

 

http://survivingantidepressants.org/index.php?/topic/10992-eckhart-tolle-the-pain-body-and-mental-suffering-during-withdrawal/

 

https://beyondmeds.com/2013/01/10/chronic-pain/

 

Also - you have a fear of insomnia - reasonable enough in normal circumstances - but nearly all of us who have been through withdrawal have had periods of little or no sleep.  It seems to be one of the things we go through in withdrawal.  Very few seem to avoid that one.

 

It may help you to re-think your insomnia (I'm not CBT'ing you, I'm just reframing a perspective).  Many of us have survived - some for months on little or no sleep.  

 

Some of us had to sleep when sleep came, even if it was in the middle of the day, only dozing for an hour at a time.  Some of us lay in bed and rest, and just let ourselves rest, without the pressure of "I must sleep."  Just rest, the body will do what it does.

 

I know you are suffering from fatigue and fog, and insomnia doesn't help.  But investing in fear of insomnia doesn't help much, either.

 

Please consider:

http://survivingantidepressants.org/index.php?/topic/53-sleep-problems-that-awful-withdrawal-insomnia/

 

and

 

Important Topics about Symptoms Including Sleep Problems

 

There's a lot of importance of light and dark therapy - if you can get out of the house once a day and let the natural daylight into your eyes - even if you don't go anywhere, but sit in the sun on your front porch or back yard for just 10 minutes a day, it may help reset your melatonin cycles.  

 

If you are having cortisol spikes (that 4 am shocking awakening), then try and get the light therapy between 10 am and noon.   If you don't have cortisol spikes, you can do it earlier.

 

Even better than sitting, are gentle walks in the sun.  I don't know if this works for neuropathy, but it seems to help with other pain to move muscles and joints a bit to keep the lymph and circulation flowing.

 

That's why I often say:  I hope you see the sun today!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Thank you, JanCarol. The neuropathy comes and goes in waves. Yesterday I had a window out of the blue. I actually got dressed in normal clothes and my daughter and I went and bought a baby gift for my niece. I can't remember the last time I did something so normal. Exhausted afterwards, but the neuropathy didn't come back. Today it's there but low and tolerable if I dress in light, loose clothing and wear really loose socks. Winter is coming and will be a challenge because both cold and touch send it through the roof.

 

The insomnia was there before the drugs. I did go many months with little to no sleep. I did the just lie and rest thing. Sometimes I could not even get up out of the chair or bed anyway. I am thin and I dropped 20 pounds because I didn't even have the energy to chew. The pain was unbelievable. Half of my brain was screaming for sleep and half was screaming to stay awake. Every cell in my body hurt. I was on zero medications. I have yet to understand why my brain went wacky like this. The V was for sleep. I took it when it was take it or die. It worked for awhile but burned out pretty quickly. Now the Q is added so I can get off the V. I get about 5-6 hours of broken sleep. It doesn't feel deep or restful. This has been going on for 2 years.

 

Coping. It would help if I had family and friends in the area, but I have almost no one. I have gotten books and CDs on Mindfulness and am trying to work through them. I have found a body scan to be helpful. Problem is, I keep dosing off! I am also on a waiting list to see someone who lists coping skills as her form of therapy (rather than just talking and talking, which I have found makes me worse and have given up on). This is a rural area. She is only in town one day/week. So I am waiting and doing Mindfulness on my own. I won't take any more drugs. There really isn't anything to help with nerve pain. It roams around my body. My doctor has urged me to take more gabapentin when I have a flare, but I have resisted. And eventually the window comes. Had I taken more gabapentin, I would have thought the gabapentin caused the window. Frankly, I don't think what I'm taking is doing any good anyway. It will be the next thing I taper after the V, I think.

 

Thank you for your concern and your suggestions. That was a lot of writing for me as tired as I am today. I need to go eat and rest some.

MN

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Hey MN - 

 

Thanks for letting me know how things are going for you.  How awesome that you had a NORMAL day, doing a NORMAL thing that all kinds of people do - a simple thing like buying a baby present - I've come to appreciate these simple things more.

 

Today it's there but low and tolerable if I dress in light, loose clothing and wear really loose socks. 

 

I've been meditating on "old fat clothes."  Sometimes around the late 1990's I stopped wearing a bra, I ceased wearing knickers (shocking!), I refused to wear any waistbands which were binding, and when I moved to Australia, I barely wear shoes!  In summer I wear sandals, in winter, UGG moccasins.  Yes, even out.  My feet are so happy in socks and UGGs that sometimes I cannot bring myself to take them off, even for "comfortable shoes."

 

I was reading about bras and breast cancer, and the restriction of lymph and the risks to breast cancer.  Not every woman who wore a bra got cancer, but every woman who got cancer wore a bra for 12 hours a day.  Underwires being most prevalently associated with cancers.  There's even a French study that says that bras make the ligaments weak!  (so big girls, don't cry - you'll be better off!)

 

Now, that I'm an endocrine mess, I think about lymph all the time.  When I do tai chi, I think about lymph.  And endocrine, and blood flow, and nerve energy, and all those things that are happening.  When you look at a tai chi master, he is in a loose pyjama-like uniform:  

TJjinsheFuxinBtaichi_zps4ggwchxn.jpg

 

Just something I've been thinking about.  

 

Why do we strive to be uncomfortable?  What is the point in that?  Those silly shoes I see the City Girls wear, and watch them break their feet and their backs to wear them?  The things we do for cleavage?  The massive LV shoulder bag.  the 4" belt, cinched in tight.  It feels positively Victorian to me, and oppressive.

 

Now, I'm no longer "body proud" like I used to be.  When I was body proud (read:  young and thin) - I would wear things that hugged - but never liked the pinchy ones.  Always hated nylons, for example.  What's up with that?

 

Sorry for the rant, I guess I wanted to affirm:  comfy is GOOD!!!!

 

Winter is coming and will be a challenge because both cold and touch send it through the roof.

 

LOL summer is coming and more of my poor, cellulite covered skin is showing. Pity the neighbors!   I understand the cold, though.  I feel like my feet are submersed in a cold stream most of the time - it's nearly Summer here, and I'm still wearing socks.  That's different.  

 

I have favourite fabrics (what is it with tags that burn your skin?  why do they do that?), cotton, rayon.  I can wear fluffy wool blend socks if they are soft.  

 

I have found a body scan to be helpful. Problem is, I keep dosing off! 

 

I know the instructions to body scan say, "stay awake," but I think that dosing off is AWESOME!  So - snooze for a bit, then.  A snooze after a body scan will have better brain waves, give you deeper rest, and maybe even help you heal!

 

So - the chances of you getting somewhere for biofeedback are probably not very good then?  I've known people with broken back in several places, and they learned to tune their brainwaves so that they could, at least, distance themselves from the pain.  If I were in your shoes, I think that is what I would seek out to replace the gabapentin.

 

Anyhow, I'm glad you saw the sun today - or at least I hope you did!  And I hope you see it again, soon!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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I am soooo with you on loose clothing! But, I have decided to make no public statement on knickers. ;) Haven't worn a bra in years and feel blessed to not be endowed! Those young gals getting implants are going to be sorry some day!

 

I did 2 body scans today and dozed off for about half the first time. Managed to stay awake the second time. :)  Neuropathy is very annoying. Not able to put on regular clothes but did put on my "fat pants" (knit cotton a size too big) and went to get groceries. Still warm weather here but a cold front is coming and that will complicate things.

 

Yep, zero chance for biofeedback. Currently, the long, guided body scans are very helpful. They seem to calm down the brain the way gabapentin does. I'm always sad when they end and I have to go back to reality.

 

On week two of just dissolving one tablet and waiting. Neuropathy still comes and goes in waves and windows but is not completely intolerable. Thinking about dissolving another tablet next week. I need to get to liquid.

 

Also, my doctor wants me to go to an EMDR program that's quite a drive. It lasts 8 weeks. You're not allowed to taper when you do it. There's a waiting list. I'm thinking I'll get on the list, keep working on just liquefying, and then go check out this program. The woman who does EMDR here in town keeps canceling on me and seems to think it will take a year of therapy with no tapering to go through her EMDR program (though she is vague). I really don't like her and I can't learn to like her with appointments 2-4 weeks apart. I hate the idea of asking my daughter to drive me nearly an hour, but it would be once a week for 8 weeks and then be done (I think). Actually, from what I've read, if you do EMDR when you're on benzos, you get some results but then you have to do it again once you get off.

 

Now, if I can just figure out how to put clothes on to go to these appointments. Pretty sure I can't go naked. Pretty sure they won't know about the knickers, though. :D

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:D   Good thing we're all anonymous here!   :P

 

I hear really good things about EMDR but what is it with the power tripping practitioners in your neighborhood?

 

You might be better off trying to Skype with someone good in a faraway place.  Or - doing like so many of us do - self teach, self explore, self discover, self transform.  It's more real when you do all the hard work yourself - but it is so hard! 

 

(I say this - but yes - I had a 14 year relationship with an A+ psychologist here - but - the bottom line is - I did the work myself, she just witnessed it, and was comforting when I was in dire straits)

 

I reckon your taper while on the waiting list thing is a good idea.  Be gentle with yourself, and patient - you have a lot of issues to unravel, and time will be the best healer.

 

I hope you see the sun today!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Yes, very good we are anonymous. Hope we don't get hacked! :D:lol:

 

No options for skyping when on government insurance here. :angry: We are so backward.

 

I have been working through a program called Mindfulness Based Stress Reduction that was started at the University Of Massachusetts. If you live in a big city and have money, you can go to their workshops to learn it. Or, like me, you can buy it on amazon. Big book and CDs. I've just scratched the surface, but I swear it has done me more good than any therapist around here ever has.

 

Where I used to live, I had a couple of therapists that I liked. But I was not in the middle of nowhere. Since my move, nothing but disasters. I was so very surprised how backward one area of the state could be compared to another area of the same state. I think I would never have moved if I had known. Of course, I didn't have a lot of options at the time. I was divorced and needed a job and a cheaper place to live. I had so much hope back then. Being out of that awful marriage and believing I could start over and find some peace. I was exhausted from the stress of the divorce but I had hope. These drugs and the way the mental health care community around here has treated me like dirt under their shoes and the backward and turned-inwardness of this community have stolen 99% of it. But I have kids so I keep going with my 1%. I guess all you need is 1% to keep pressing on. :excl:

 

Thanks for the encouragement about the EMDR. I'm nervous about it. I know it's not a cure-all, but it may help me improve my sleep enough to make the taper work better. This whole mess started as a sleep disorder. Depending on who you ask, the sleep disorder caused the PTSD or the PTSD caused the sleep disorder. At this point, I guess it's a moot point. :unsure:

 

And thank you for the reminder to be patient. That has never been my strength! If/when I get through this, I will certainly be a stronger, wiser person. (One would hope!)

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Hey MNGal - EMDR

Thanks for the encouragement about the EMDR. I'm nervous about it. I know it's not a cure-all, but it may help me improve my sleep enough to make the taper work better. This whole mess started as a sleep disorder. Depending on who you ask, the sleep disorder caused the PTSD or the PTSD caused the sleep disorder. At this point, I guess it's a moot point.  :unsure:

 

Here is a story (told to me confidentially on another forum)

 

A few years ago a friend of mine, who lives in the Phillippines, survived with her life and her family and pets from the earthquake there a few years back.  Her house was partially destroyed, and she had no choice but to live in it, whether it was safe or not.  She developed severe PTSD.  She got sensitive to any deep sounds, like planes overhead, or crashing surf (I seem to recall that earthquake was followed by tsunami, too, so there was flooding when it happened).  She was a wreck.  Her cats were wrecks, too, and are no longer the sweet creatures they were before the earthquake.

 

I cannot imagine, having the very earth below me, shaking like a bowl of jello, and trying to grab all my kids and pets and get out of the house to safety before parts of it came crashing down around my ears.  Then, when she was getting ready to return home (even though it wasn't rebuilt yet), the Cyclone hit.  Just to give you a feel for what she was going through, here's an article with some photos of how severe this stuff is:  http://www.dw.com/en/philippines-a-country-prone-to-natural-disasters/a-17217404

 

Now my friend, just happens to be a mental health practitioner.  She's heard that EMDR helps with PTSD.  She knew, she wasn't sleeping, she was on hair-trigger all the time, she was becoming "not a nice person to live with."  So she drove to the city 2x a week to start EMDR.  (now, because she was a mental health practitioner, she probably got good referrals to a great practitioner - we can't always have that!)

 

after a month, she was going 1x a week, then 1x a month.  Now she just goes when she feels that "out of control feeling" coming up again.

 

More - my bro-in-law did some EMDR stuff, too.  He doesn't do the trauma part of it, just has an eye chart with arrows.  The focus that it took for him to follow the arrows, helped calm him down.  It did not cure his PTSD, because he still hasn't looked at the original trauma - but - it was a good tool for training his brain.

 

Here's a bunch of references I've kept in my toolkit:

Some people swear by EMDR:

https://www.youtube.com/watch?v=SQ_TnyknP5I

 

Self Administered EMDR:

https://www.youtube.com/watch?v=OlfQIRJEsYk

 

EMDR Therapy Session Self Administered

https://www.youtube.com/watch?v=55BLzhHBkVc

 

PTSD Visualization for Trauma Relief and Healing

https://www.youtube.com/watch?t=2&v=H8e4sATalz8

 

I hope you see the sun today!

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Wow, thanks for this info. It encourages me to keep trying with this. I have met several times with a therapist who does EMDR who is in town every other week. It's been 3 months and we haven't even started the EMDR. She keeps saying, "These things have to be done slowly." I am beginning to suspect that she means she is busy and doesn't have time to go any faster. She is a supervisor of interns in the practice and I feel like I'm very low on her priority list. She has canceled me twice and been very late to appointments twice out of 7 total appointments in 3 months. I'm supposed to see her Thursday after waiting a month to see her. I don't really like her. She's condescending and has a flat personality and seems to want to drag this out forever. And I'm not suppose to taper during all of this.

 

So I looked into a program in the next county. I tried to get in during the summer and was told they were not taking new people. This time they actually allowed me to schedule, so I have an appointment in 2 weeks. I was told they have an 8-week protocol that you have to commit to being there weekly for 8 weeks. Didn't want to ask my daughter to do that, but she said she would. Again, no tapering during EMDR.

 

Well, I have already ended my Q taper and am letting that settle down. It's been rough but I'm seeing windows. I have dissolved 1 V tablet and a week later felt a spike in anxiety, so am waiting for that to settle down. Talking about that on my benzo thread. And I'm thinking about these 2 EMDR programs. The one close by that I don't like and after three months we haven't even started because she keeps canceling or showing up late. And the one I have to drive an hour to see but says they have an 8-week protocol and you have to commit to weekly sessions for eight weeks. Pausing my taper for 8 weeks doesn't sound so horrible. But asking my son or daughter to drive me all that way to see another stranger does! ;)

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Neuropathy seems to be getting worse though I have made no changes. Last night was horrific.

 

I am wondering if taking my Q in suspension is causing this. But there's nothing to do but keep it at 17mg in suspension or go back to the whole 25mg tablet.

 

Not sure what to do. I want to get off the V, but this neuropathy is ruining me. I wish I knew what it was from. Just from dissolving 1 V tablet or from taking my Q in suspension every night or something else???

 

:wacko::(

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Managed to put on clothes and go to the grocery store but very glad to be back home in my nightgown. Don't understand why this sudden worsening after seeing signs of improvement this past week. So discouraged. Don't know how to live with this kind of pain day after day.

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  • 3 weeks later...

I have all my V in liquid now and have been holding the Q at 17mg (also in liquid) for awhile. The waves of neuropathy are not letting up. I will have a day or several hours when I think I've turned a corner then the wave hits me and disables me. I want to tear my skin off or tear my brain out. It seems that this got worse when I started to cut my Q, but then I thought it was getting better. But now it's getting worse again.

 

I don't know if liquefying could possibly cause this or if this is left over from my Q taper down to 17mg. Or if my liquid suspension of the Q is inaccurate? I dilute it to 200ml so that if I make a mistake it won't be a big one.

 

I wonder if I should up-dose the Q back to the tablet (25mg) and just work on the V. Or is it too late for that?

 

I just cannot believe how bad the burning is and it is hitting me everywhere. Could the Q taper have caused this? Could the liquefying have caused this? How long do you wait and wait for it to get better? Or do you just go ahead and taper? I can't think straight.

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  • Moderator Emeritus

 

I did 2 body scans today and dozed off for about half the first time. Managed to stay awake the second time. :)  

 

 

 

Hi, MN.

 

It's frustrating when these waves hit, but I'm enjoying reading the back-and-forth between you and JanCarol, as you're having a great discussion on non-drug ways of dealing with pain.

 

I just copied a couple of sentences that stood out. I know that Dr. Jon Kabbit-Zinn says that the body scan is to "come awake" as opposed to "fall asleep", but I'm wondering if this might be the best non-drug coping skill you could have for not only falling asleep, but also handling pain. If it gets you to the right space that you're able to drift off to sleep, then it sounds like a really good pain reliever.

 

When you're having a lot of pain, can you lie down and do a body scan? Not trying to force yourself to stay awake, but simply letting your mind/body relax into the words, and seeing if this can't be a relaxation / teaching / learning experience? Over time, perhaps this will "teach" your mind / body how to relax into this form of pain relief, since it seems to have that effect for you. 

 

Sending healing vibes your way. 

 

 

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Yes, that's what I like to do. I found another body scan that I like from Palousse. I'm not crazy about the ending on Kabat-Zinn's (the whole hole in your head analogy is icky to me) and looked for another. Just found Palousse this morning. Trouble is, it's been so noisy around here all day every day lately that lying down to do a body scan is just about impossible. Giant leaf sucking machine, people mowing and leaf blowing, somebody hammering on something. All this beautiful weather had a downside. Everyone is outside making noise, By now its usually cold and quiet. I'm trying to figure out if there's some way I can do this in the basement, but it's so cold down there and what would I lie on?

 

I'm also trying to figure out if I'm doing something wrong that is causing this. I can't remember when the neuropathy was last this bad. And should I go ahead and taper anyway? I feel like as I wait I am suffering for nothing. :( If I'm tapering, at least I'm moving toward something. Or is that the wrong idea?

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  • Moderator Emeritus

Sounds like environmental chaos-stress is adding to your pain. I can certainly understand that.

 

Perhaps it's time to make that basement room a castle - do you have an electric blanket for warmth? Noise canceling headphones to keep out the giant leaf machine and other external noise makers? Try to make your room your castle and do a little "nesting" for winter. 

 

Noise canceling headphones can be a bit expensive, but I've had a pair for years, and they are great for blocking out apartment and city noise that I'm surrounded by. They make the world a little "softer" for withdrawal. 

 

 

 

I'm also trying to figure out if I'm doing something wrong that is causing this. I can't remember when the neuropathy was last this bad. And should I go ahead and taper anyway? I feel like as I wait I am suffering for nothing.  :( If I'm tapering, at least I'm moving toward something. Or is that the wrong idea?

 

 

This is the million dollar question. For many people, the CNS is far too traumatized from years of taking drugs, changing doses, etc. and they have to continue on with the taper, even while symptomatic. 

 

As long as you're tapering slowly and carefully, I would keep moving forward. You've been at this for a number of years, so there's a certain amount of battle fatigue that sets in, and this can make it hard to know when to keep tapering and when to hold. 

 

If holding for long periods of time isn't working, then continuing on with a slow, gentle taper while using tons of self care is the only way out.

 

I'm glad you found another body scan you like better. There are so many out there. 

 

Here's one you might like. It's a cartoon version.  :)

 

Body Scan Meditation by GoZen!

 

The fact that you're getting some relief using these types of non-drug coping skills is a great sign that you're really learning how to relax and self soothe. If you can do that while you're in pain, you're going to be a warrior when you heal and are only dealing with regular life stuff.  ;)

 

 

 

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Thanks, Shep, for the encouraging words.

 

I do have a heater I can put in the basement. I would just need something comfortable to lie on. I wonder if there is something like an ultra thick meditation mat. I would need something I could fold up and put away somewhere. Not a lot of extra room in this rental. It was a huge downsize for us after my divorce.

 

Ah well, by the end of the week the real weather will arrive and it should quiet down until summer. Also, end of daylight savings time, so late afternoon everybody is  starting to head indoors as the sun sets as of today! :)

 

I remember many years ago, in my "other life" (before I was divorced and disabled) I had some noise canceling headphones. But they made me feel a weird pressure in my head so I returned them. I do have a sound machine that makes ocean waves sounds. I always have that on when I'm meditating so at least one pleasant sound is there. Something to sort of rest my ears on. It works OK if the noise is not right next door. My problem is we moved here from the country. I'm just not used to city noises. And we are way too close the the freeway. Rentals tend to be that way. But in winter the wind shifts and blows the noise the other way. It's amazing how much quieter it is.

 

That's a very cute body scan. I like that it's a female voice. The others I have are male. It will be nice to be able to switch that up.

 

Neuropathy was horrible again this morning but eased up this afternoon. I did my nightgown trick. I put on a soft nightgown as sort of a long slip and put a denim skirt and T-shirt over it. That way nothing rough was touching my skin. It was warm enough today to go out that way. My daughter took me to the Goodwill and we bought a teeny tiny basket with a poinsettia on it for 75 cents. It is going to be a Christmas present for our hamster. Yes, I have a hamster. Our landlord only allows pocket pets and they are never allowed out of the cage (when he's looking). So my daughter saw this basket and said we could put treats in it and put it in Nibbles' cage on Christmas. Benzo brain here was actually trying to figure out where to hide it so the hamster wouldn't see it and ruin the surprise! :lol: I think I need more sleep.

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  • Moderator Emeritus

"I do have a heater I can put in the basement."

 

I read this as:  I do have a healer in the basement.  If only!!!

 

"trying to figure out where to hide it so the hamster wouldn't see it and ruin the surprise!"

 

Of course you have to hide it!!!  That's part of the fun.

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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Chessie, thanks for the laugh. I think we would all be at her house if she had a healer in the basement!!

 

MNgal I live near the highway too. I love my home but not where it is. When we were looking for a house we only had weekends and by the time the weekend came most of the houses we wanted to look at were gone already. Besides, I've noticed this particular city has very few quiet spots. Maybe that's true for most cities. I miss the quiet of where we used to live as well. I also have a sound machine. I don't think I could sleep at night without it. 

 

What a fabulous trick for your pain. I'm glad you found something that works for you. 

 

I personally am dreading the holidays this year but I'm glad your hamster is getting his own tree and presents. I think it's awesome. We hide our dog's presents from her so I don't think that is benzo brain at all :) I don't suppose your hamster likes to open presents? Our dog tries to open everyone's presents. Even when there is a birthday she wants to open the presents. She gets all excited. It's adorable. 

 

I hope you get more sleep, Hugs

Buspirone to 45mg, Cold Turkey St. John's Wort 600mg Jan 1, 2016. Cold Turkey Buproprion 150SR June 1 due to severe Akathisia that did not decrease with reducing the dosage.

Clonazepam 1.25mg, started daily liquid micro taper of clonazepam on Nov 1, 2016. Changed to sxs based taper 01/17. Slow and steady

11/10/16 .4104 3X day; 11/17/16 .4091 3x day; 11/28/16 .406 3x day; 12/4/16 .404 3x day; 12/11/16 .4028 3x

01/12/17 .39267 3x day holding; 02/25/17 .3902 3x day, holding. .3823mg 3x day. Tapering at .0007462mg as able;  09/21/18 .3542mg 3x day.  1/3/2019 .339mg 3x day. 6/25/19 .3307mg 3x day. 8/24/19 .317mg 3x day 2/13/20 .2886mg 3x day 3/18/21 .2388mg 3x day 06/17/21 .2239mg 3x day 09/13/22 .1682 3x day

L-theanine 200 mg, L-glycine 500mg 1x day and 1000mg 1x day, vit C 1000 mg sustained release 2x day. Fish oil 1800mg EPA + DHA. Vit E 400 IU, magnesium in various forms. Inositol 3x a day abt 14mg, Taurine 500mg.

5/20/16 Using Cranial Eletrotherapy Stimulation. 2x day 1 hour at level 1. Using Alph-Stim AID. 

 

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Ha, ha, Chessie! OK, I will hide the hamster's present. Good to hear, tntd, that hiding presents from critters is normal!  Although, I will say, the dog is much more likely to find the present than the hamster is. :lol: 

 

Yes, you do have few quiet spots there. It must be a hard adjustment. My particular city has few decent rentals, so it was slum or highway. I picked highway. Not so bad, actually, because there's a narrow row of tress blocking most of the view of it. Well, till the leaves drop. I think it was the trees that attracted me. We were in country before my divorce. I miss the trees and the stars so much.

 

Yes, the holidays. I am trying to figure out how to lower my expectations and somehow make it better this year than last year, which was the worst Christmas of my life. Big family disaster right before Christmas that lasted well into the new year. I think everyone is a little uneasy because of what happened last year and because I am doing so poorly trying to w/d again. And I think I am going to hold during December.

 

Here's my motto for surviving holidays: All traditions must be simple and must involve chocolate. To this end, just in case the country collapses tonight and the stores are all closed tomorrow :P , this very morning I went to the store and bought my bag of gluten-free chocolate covered pretzels for Christmas eve. So that tradition is officially covered. I used to dip them myself. But in w/d that no longer qualifies as simple. ;) And the pretzels, (micro-bag that cost a fortune) they must be hidden from me  or I will eat them all and well before Christmas.

 

To un-stress the holidays, we don't exchange gifts any more. I buy some white elephant-type things and wrap them and we roll the dice. If you roll a 7, you get a present. If you roll doubles, you can steal a present. I usually put in one or two nice things like a Starbucks gift card or some Godiva chocolate, but the rest is stuff from garage sales or the Goodwill. I plop them in gift bags from Walmart, staple them shut, stick a bow on, put them on the hearth. The end of the whole gift-giving stress. And something to do besides sit and stare at each other.

 

Ah well, back to doing the laundry. I am in my nightgown puttering around and avoiding looking at the news. And I think I will do 2 or 3 body scans today. Maybe 3 now that I have 3 to choose from. I sure do hope I don't have to go to bed tonight not knowing how the election turned out. I want this whole mess OVER. :angry: 

 

MN

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There is an apartment complex between me and the highway directly behind but then there is a hill the highway goes up and we get most of our noise from that. 

 

I really miss the quiet and the stars too. It has been a rough adjustment made harder by withdrawal. 

 

I like your Christmas ideas. I can't imagine making all the treats I normally do for Christmas this year. My daughter is dairy free and all of us are gluten free so I usually make any chocolate treats we have. Just the thought makes me anxious. 

 

I'm sorry to hear you had such a rough Christmas last year. I hope this year is enjoyable at least. 

 

Hugs

Buspirone to 45mg, Cold Turkey St. John's Wort 600mg Jan 1, 2016. Cold Turkey Buproprion 150SR June 1 due to severe Akathisia that did not decrease with reducing the dosage.

Clonazepam 1.25mg, started daily liquid micro taper of clonazepam on Nov 1, 2016. Changed to sxs based taper 01/17. Slow and steady

11/10/16 .4104 3X day; 11/17/16 .4091 3x day; 11/28/16 .406 3x day; 12/4/16 .404 3x day; 12/11/16 .4028 3x

01/12/17 .39267 3x day holding; 02/25/17 .3902 3x day, holding. .3823mg 3x day. Tapering at .0007462mg as able;  09/21/18 .3542mg 3x day.  1/3/2019 .339mg 3x day. 6/25/19 .3307mg 3x day. 8/24/19 .317mg 3x day 2/13/20 .2886mg 3x day 3/18/21 .2388mg 3x day 06/17/21 .2239mg 3x day 09/13/22 .1682 3x day

L-theanine 200 mg, L-glycine 500mg 1x day and 1000mg 1x day, vit C 1000 mg sustained release 2x day. Fish oil 1800mg EPA + DHA. Vit E 400 IU, magnesium in various forms. Inositol 3x a day abt 14mg, Taurine 500mg.

5/20/16 Using Cranial Eletrotherapy Stimulation. 2x day 1 hour at level 1. Using Alph-Stim AID. 

 

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EnjoyLife makes a dairy-free chocolate chip. Melt them and dip Glutino pretzels in them, lay them out on waxed paper to harden. Refrigerate if they refuse to harden. Declare the chocolate treats done! ;) I have also been known to put the chocolate and the pretzels on the table and tell people to help themselves. :o

 

There is an apartment complex between me and the highway directly behind but then there is a hill the highway goes up and we get most of our noise from that. 

 

I really miss the quiet and the stars too. It has been a rough adjustment made harder by withdrawal. 

 

I like your Christmas ideas. I can't imagine making all the treats I normally do for Christmas this year. My daughter is dairy free and all of us are gluten free so I usually make any chocolate treats we have. Just the thought makes me anxious. 

 

I'm sorry to hear you had such a rough Christmas last year. I hope this year is enjoyable at least. 

 

Hugs

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This morning I woke up twitching all over my body. When I move around it is less, but it is still there. My eyes blink, my foot moves, I feel tiny twitches all over the place. I have had a few little twitches before but nothing like this. I'm scared and don't know what to do. So far all I have done is a partial taper of my Seroquel and dissolved my V.

 

This reminds me of the many years ago when I had these jerks as a toxic reaction to  an antidepressant. They got worse and worse and disabled me for over 6 months. I was ready to kill myself from exhaustion and fear, but I had 2 small children. And I was off the drug and was told it would get better so I hung on.

 

I'm so scared. Every time I twitch, I am more scared.

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