Kristine: not alone

[Kristine]

Thank you MMT 😊 I'm constantly making spelling mistakes! Glad you could fix it and thank you for changing the order. K

[manymoretodays]

  I kind of had to.......change the order.  Works out better though, eh?  Your current meds. listed first.

[Kristine]

Much better, thank you MMT 🙂 K

[Kristine]

Hi, Just thought I'd post an update,

Current medications are Fluoxitine 40 mg - which I take in the morning.  Dexamphetamine 7.5mg - 5mg in the morning and 2.5mg in the afternoon (last taper was 1.25mg on the 4th December 2017).  Clonazepam current dose 0.375mg - 0.125mg in the morning, 0.125mg in the afternoon and 0.125mg at bed time.  This clonazepam taper commenced in mid April 2017. Between this time and 14th July 2017 my clonazepam dose went from 1.5mg to 0.25mg.  The last 0.125mg dose was reinstated due to horrific withdrawal (I have written about this in a previous post).  I was guided by my psychiatrist but I now know it was way to fast.  Also other medications were being quickly tapered.  I remember feeling like I was dying.  I had very little understanding as to what was happening to me.  The past 10 days have improved but I rarely leave the house (due to anxiety), still am unable to drive, unable to return to work ( a job which I loved and miss but know I could not preform ).  Any kind of stress triggers a domino effect within my CNS. I burst in to tears, get irritable, the tremors start, nausea kicks in and then I have to lie down.  However, the w/d has defiantly improved and I am now having brief windows open.  Strangley, I have completely lost my ability to be creative (particularly over the past 3 months), could this be the Fluoxitine? I used to draw, paint and cook as a creative and calming outlet.  It is like feeling dead inside but hypervigilent at the same time.  I'm in a constant state of fight or flight.  Over the years so much has changed.  I know I will get through this, but I have come to accept that this will take many years. And that's ok, cause it has to be.

  

Any advice would be welcome.  I'm tempted to taper a bit more of the dexamphetamine because I feel the stimulant effects are not beneficial.  Any advice? I feel like the clonazepam withdrawal is prolonged and taking its toll...shall I post this in the benzodiazepines thread? Honestly, I feel stuck and not sure what to do.  The fatigue won't give me a break and I sleep 4-5 hours per night on average per night.  At least my sleep has improved.  I can't sleep during the day.

Cheers K 

[nz11]

Hi Kristine so glad you have found sa.

Just read your amazingly well written first post. I think everyone here can relate so much ...you have written all our stories.

I just cant get over the number drugs that you have been given. It is an incredible failure of the hypocratic oath of 'first do no harm. '

 

A really great book and an easy read is R Whitakers "anatomy of an epidemic' Are you able to get hold of this from the library even. It would be very worthwhile to read this award winning book. 

Its great you are having some brief windows. 

If you are still unstable then maybe a longer hold is best before tapering again. 

 

nz11

 

 

[Kristine]

Thank you nz11, The hypocratic oath doesn't appear to apply to psychiatry.  Kinda wish I could give a giant universal hug to all those effected by this atrocity. I haven't read 'anatomy of an epidemic' (it is one of many on my list!) but I've watched many of Robert Whitikers presentations on YouTube.  I've been listening to the 'let's talk withdrawal' podcast which has been therapeutic.  James Moore has a very soothing voice!!  www.jfmoore.co.uk>podcast 

So happy to see you are off Paxil 😌

Cheers K 

[Kristine]

Just thought I'd throw another question into the mix....what are people's thoughts relating to neurologists? Do they understand w/d?  The last time I saw my psychiatrist (11th November 2017) she sent me off for an brain MRI and referred me to a neurologist.  My physical and cognitive symptoms were so visabilly obvious during that appointment, I think she freaked out,...maybe she thought I was having a stroke. The appointment isn't until next year and the MRI report indicated a narrowing of blood vessels.  I don't think a neurologist could help much,  however,  (this is the interesting bit).....in mid May 2016, I had my first brain MRI (I had had frequent migraines for 6 months) which was just at the beginning of the second psychiatrists unethical polypharmacy and ECT treatment and when I was suffering from excurtiating undiagnosed citalopram/seroquel and diazepam withdrawal.  I would be extremely interested to have a trained eye compare these two MRI scans.  Visible brain damage? Any thoughts? K

[nz11]

Yes isn't James doing a great job. 

 

On ‎12‎/‎10‎/‎2017 at 3:01 PM, Kristine said:

However, the w/d has defiantly improved and I am now having brief windows open.  Strangley, I have completely lost my ability to be creative (particularly over the past 3 months), could this be the Fluoxitine? I used to draw, paint and cook as a creative and calming outlet.  It is like feeling dead inside but hypervigilent at the same time.

 

All these drugs you have been on have the ability to emotionally numb. So I don't think you could point the finger at any one culprit imo. (gee  300mg of Seroquel is also in the lineup ) .

My goodness I cant believe the extent of your drug sig I feel so angry on your behalf. a first glance at your drug sig one would think that those drugs are all in sequence however closer inspection reveals many were given at the same time. Please consider writing a complaint letter if you feel you have been harmed. Check out the Aussies thread I think there is a Sydney law office  considering a class action law suit...don't know where thats at though.

 

Maybe the best thing is to try not to worry too much once you taper down and off I'm sure your creative abilities will return in time. 

 

So glad the wdl has improved and you are getting windows. Please don't ever do anymore 'abrupt ceasing'.

When you are ready to taper please put aside several years. And follow the advice on this site. Moderator BM took over 5 years to taper off 40mg. This is the kind of dependency we have covertly been pushed into.

 

nz11

 

 

[Kristine]

Hey nz11, thank you for your support.  And thank you for recognising the extent of my polypharmacy nightmare. I already have a draft letter of complaint but it still needs a lot of work.  I do feel angry about what has happened.  I'm trying to channel that negative energy into a productive force, not an easy task!  What concerns me is this psychiatrist is still practicing and his current and future patients are at risk.  I'm trying to get well but I also have a responsibility to bring my story to the attention of the authorities. However, I need to write a watertight account of what happened and this takes time and energy. Energy is in short supply.  I've been through many hardships in my life and this resulted in a person who was emotionally wounded.  My human reaction to trauma should never have been medicated, at least not in the long term.  I've been trying to find information about support groups/class action in Australia but haven't been successful so far.  

 

38 minutes ago, nz11 said:

So glad the wdl has improved and you are getting windows. Please don't ever do anymore 'abrupt ceasing'.

When you are ready to taper please put aside several years. And follow the advice on this site. Moderator BM took over 5 years to taper off 40mg. This is the kind of dependency we have covertly been pushed into.

 

The drugs that were abruptly ceased were mostly during the 11month time frame when this particular psychiatrist treated me.  I would never do this again especially now that I've got control back of my life.  Thankfully, I kept a rough journal - there are also scatterings containing my husbands handwritting - because my memories of this time are jolted (he also coerced my vulnerable past self into ECT treatment - that's another story in itself) I do remember crawling along the bedroom floor trying to get to the bathroom because I could not physically stand.  I was grossly overmedicated, suffering from withdrawal and had lost my dignity.  I think it is referred to as a "chemical lobotomy".  At the time, I believed what I was told..."you have treatment resistant depression.....now let's add this drug....".  This just can't continue to happen 😢😢😢

 

Sorry nz11 that was probably a bit full on. K

[Marmot]

That's beyond terrible, and I'm so angry that they did this to you. You are very strong for writing the letter of complaint. 

 

About the creativity, I've heard peers talk about decreased creativity from any of the classes - stimulants, antipsychotics, and antidepressants. For me the biggest impact came from the SSRI. I was a little robotic when on all four of my meds. After going off the Cipralex though, I was able to make a clever woodworking project with my partner. However, my sense of beauty only fully started coming back a week or two ago (once off of the stimulants + SSRI + abilify, and off half the WB). Now sometimes when I look at things, I get a flicker of meaning and depth and beauty which was gone for years. For myself at least, those feelings are the precursor to the artistic thoughts, the thoughts like: "wow this is so incredible that I want to paint something like it" - those thoughts still haven't returned, but I think they are just around the corner. Long story short, it's starting to come back for me, and I think it will come back for you too! Just be really patient with yourself; you've been through a lot. 

[Kristine]

Hi Marmot,  Thank you for your support and understanding.

 

38 minutes ago, Marmot said:

However, my sense of beauty only fully started coming back a week or two ago (once off of the stimulants + SSRI + abilify, and off half the WB)

 

This is wonderful news! Also fantastic that you were able to create a piece of woodwork with your partner 🙂

 

38 minutes ago, Marmot said:

Now sometimes when I look at things, I get a flicker of meaning and depth and beauty which was gone for years. For myself at least, those feelings are the precursor to the artistic thoughts, the thoughts like: "wow this is so incredible that I want to paint something like it" - those thoughts still haven't returned, but I think they are just around the corner.

 

Thank you for sharing this.  I don't think I can express the value of your words. It does give me that little extra speck of hope 🙂

 

Off topic, being an Aussie, I had never heard of a Marmot before!  I just googled it and they are the cutest giant squirrels creatures.  Have to say that was the highlight of my week! I originally thought your avatar was a beaver 😁 

[Kristine]

Hi everyone  I feel I have stabilised, so I'm going to taper the dexampetamine again today.  I take 5mg in the morning and 2.5mg in the afternoon.  I'm more fatigued in the morning and my anxiety increases during the day so I thought I would decrease the afternoon dose by another 1/4 tablet which is 1.25mg. This has been reasonably well tolerated with the past few reductions (very different from the 5mg drop my psychiatrist recommended).  Wish me luck!

Cheers K 

[Gridley]

Kristine, from 2.5 to 1.25 is a 50% drop.   That it is too much.  Be gentle with yourself and don't rush it.   Just hold for a while.  This explains why:

 

Brain Remodelling

[Kristine]

Hi Gridley,  My total daily dose of Dex at the moment is 7.5mg.  5mg in the morning and 2.5mg in the afternoon.  I thought the calculation was based on the total daily dose. Or am I wrong? Anyway this would mean decreasing the Dex by 0.75mg.  If I do this I'll have to dissolve it in water and calculate the dose in mls.  Not sure how well the tablets will dissolve 🙄 What do you think? Still hold?  I guess my rational is both the Dex and the fluoxetine are stimulating and along with w/d symptoms are contributing to my anxiety.  Cheers. K 

[Gridley]

Let me check with the other mods and get back to you.

[Kristine]

Very much appreciated Gridley, Thank you. K

[Kristine]

The tablets are 5mg, scored in 1/2 and do not have an enteric coating. K 

[Gridley]

Thanks for the info. Let's see what we can do once I hear back.

[FarmGirlWorks]

On 12/10/2017 at 11:11 PM, Marmot said:

About the creativity, I've heard peers talk about decreased creativity from any of the classes - stimulants, antipsychotics, and antidepressants. For me the biggest impact came from the SSRI. I was a little robotic when on all four of my meds. After going off the Cipralex though, I was able to make a clever woodworking project with my partner. However, my sense of beauty only fully started coming back a week or two ago (once off of the stimulants + SSRI + abilify, and off half the WB). Now sometimes when I look at things, I get a flicker of meaning and depth and beauty which was gone for years. For myself at least, those feelings are the precursor to the artistic thoughts, the thoughts like: "wow this is so incredible that I want to paint something like it" - those thoughts still haven't returned, but I think they are just around the corner. Long story short, it's starting to come back for me, and I think it will come back for you too! Just be really patient with yourself; you've been through a lot. 

Thank you so much for that bit of hope. I have done graphic design and feel like the 5 years I was on Zoloft destroyed my creativity. I am still hopeless with it in WD and think that maybe I am just heading for a non-creative job going forward. But I do feel like my contribution in life will be creative. This gives me hope that it may come back after this nightmare.

[Kristine]

49 minutes ago, FarmGirlWorks said:

Thank you so much for that bit of hope. I have done graphic design and feel like the 5 years I was on Zoloft destroyed my creativity. I am still hopeless with it in WD and think that maybe I am just heading for a non-creative job going forward. But I do feel like my contribution in life will be creative. This gives me hope that it may come back after this nightmare.

Hi FarmGirlWorks, I'm confident we will both get back our creativity and you will return to graphic design. I think 'hope' is extremely important during this process and in life in general.  I'm pleased Marmot's experience resonated with you as well 🙂 I keep saying to myself "it will be ok...". It is gutting to loose ones creativity.  My imagination is gone and I guess that is the core of the problem.  However, even if I wanted to paint/draw I can't because the tremor in my hands prevents it.  These drugs should be pulled from the market. K 

[FarmGirlWorks]

32 minutes ago, Kristine said:

These drugs should be pulled from the market.

Yes. Totally. Agree.

[manymoretodays]

Hi Kristine,

 

4 hours ago, Kristine said:

Hi Gridley,  My total daily dose of Dex at the moment is 7.5mg.  5mg in the morning and 2.5mg in the afternoon.  I thought the calculation was based on the total daily dose. Or am I wrong? Anyway this would mean decreasing the Dex by 0.75mg.  If I do this I'll have to dissolve it in water and calculate the dose in mls.  Not sure how well the tablets will dissolve 🙄 What do you think? Still hold?  I guess my rational is both the Dex and the fluoxetine are stimulating and along with w/d symptoms are contributing to my anxiety.  Cheers. K 

 

Yes, a .75mg. drop would be 10% of your total dose, and is correct.  I think you will have to dissolve your 5mg. tablet in water for the best accuracy.  As well as have a good oral syringe with some gradients between mls.   Which dose were you going to decrease?  The am dose or the afternoon dose?  So then your am dose would be 4.25mg. OR your afternoon dose would be 1.75 mg.     And then again........you might consider holding through the holidays at least........   When was the last time you tapered any one of the 3 meds/drugs that you are on now?

 

On 12/10/2017 at 8:59 PM, Kristine said:

 I would be extremely interested to have a trained eye compare these two MRI scans.  Visible brain damage? Any thoughts?

 

I don't know........I know at one point I did want to get a MRI scan, but it was so much out of pocket to pay, that I didn't.   I'm kind of glad now as I would hate to obsess over some finding that may/or may not have clinical significance.  I'm not sure they always are clear cut......the MRI results.  Although it would be of interest to see if your narrowed blood vessels(from the previous MRI) are now normal limit.  Soooo........I think it's up to you.  Sometimes........I think the MRI can bring some reassurance as well, that you are just experiencing W/D..........even though the neurologist may have no familiarity with W/D.

 

Love, peace, healing, and growth,

 

mmt

Edited December 13, 2017 by manymoretodays

[Kristine]

 

1 hour ago, manymoretodays said:

When was the last time you tapered any one of the 3 meds/drugs that you are on now?

Thank you MMT, you're a gem  😊 I've tidied up my signature a bit because it was lacking info.  I last reduced the Dexampetamine on the 4th Dec 2017, by 1.25mg from 8.75mg to 7.5mg, I think it was the day before I joined SA.  My instinct tells me that a reduction of 0.75mg will be tolerable.  I thought I would decrease the morning dose tomorrow. I watched the video Alto has dissolving a tablet in distilled water ect... So I will follow those instructions.  I have various oral syringes',  I'm a nurse so I've got lots of bits and bobs around the house. If i don't feel ok, I can reinstate the dose. 

 

1 hour ago, manymoretodays said:

I'm not sure they always are clear cut......the MRI results

I agree, just thought it might be an interesting comparison.

 

thank you again MMT. K

[Kristine]

....MMT....my main concern is when I start tapering the clonazepam and fluoxetine! K

[manymoretodays]

Sounds okay, I think........  Just proceed with caution.   You have already managed to come down all the way from 20mg.  I do, however, respect your instinct that perhaps........you might get a break from some of the "neurofears" this way. 

 

I found myself going up a little in dosage, when first trying to come off my low dose adderal salts(2.5mg).  But that was after a cold turkey attempt.  My visit with my shrink at the time was a disaster, as far as me really communicating very well, what I needed, so I could liquify, and go slow.  So I am glad you are able to do the liquid titration method.

 

Ah......another nurse.  I think there are many of us here.  And aren't we the worst patients sometimes........speaking for myself anyway.

 

One thing at a time.  You've come down a lot on the Clonazepam already and, so,.............Yay!!!

 

Love, peace, healing/in recovery, and growth,

 

manymoretodays

[Kristine]

Hey MMT,  It really is a long road, isn't it 😳 Didn't realise you were a nurse, nice to know 😊 Sometimes I feel really gullible that I was so trusting of the psychiatrists; considering my profession; and looking back I should have known better.  Anyway, I can't change that now.  However, when I was a student, I do recall being taught the chemical imbalance myth during a lecture in 'bioscience' ....this lie is being peddled to every medical field.  Very disturbing.  When I get the energy I'm going to dig out those old notes and take a look!

 

I ended up getting very stressed and anxious last night...cut a long story short... my teenager was rolling his eyes and was being, well....a teenager! So I'm going to hold for a bit longer.  I do not cope with stressful situations at all.  I used to be a resilient person. Very frustrating.

 

thank you MMT. K 

 

 

[Altostrata]

Hi, Kristine. How are you sleeping? Are you more jumpy and nervous during the day or at night?

 

What times of day do you take your dextroamphetamine doses? When you take a dose, how does it affect you?

[Kristine]

Hi Alto,  Firstly, thank you for creating SA.  I am so grateful.

I have trouble getting to sleep. Toss and turn for hours. Generally I get 4-5 hours. This refers to the past month. Prior to this I had little sleep (2-3hours) and a two week period in September 2017 of continuous insomnia.  After feeling ok for a few weeks I've hit another wave and I've decided to hold at the moment.  

In general my day goes like this.

• 8am : Fluoxetine 40mg, clonazepam 0.125mg, dexamphetamine 5mg
• Anxiety starts to noticeably increase around 12 noon
• 1pm: clonazepam 0.125mg, dexamphetamine 2.5mg
• In the late afternoon the chest tightness, panic and terror kicks in. I try to manage this with various breathing/meditation techniques.  However, if a little disruption happens (eg.life) I usually end up sobbing, trembling and become extremely irritable.
• 6-7pm my anxiety starts to decrease a little and becomes less distressing
• 10pm: clonazepam 0.125mg then try to get to sleep

- I also suffer from constant headache, relentless fatigue, muscle ache and pain, tremors, poor concentration... just to name a few.  

 

Cheers.K

 

[Gridley]

It's good you can monitor your symptoms so well.  Holding now is a good idea.

[Gridley]

Kristine,

 

For when you are ready to do your Dex taper, Alto said:

 

"Taking less dex in the evening might reduce activation at night, which may be desirable, depending on her symptom pattern. If she's sleeping okay but more activated during the day, applying the 10% reduction (.75mg) to the morning dose might be a better idea."

 

 

[Kristine]

Hi Gridley, thank you for the advice.  I'll hold at the moment. Not sure which dose of Dex to taper when I'm ready.  I'll reflect on Alto's advice.  I'm sure one of the issues is that both dexamphetamine and fluoxetine are stimulating.  If I had found SA earlier I would have decreased the dexamphetamine, then the fluoxetine and left the clonazepam for the last taper.  If anyone is in this situation, that would be my advice! Cheers. K

 

[manymoretodays]

Hi Kristine,  

 

Also, there apparently IS a liquid preparation of the Dex available here in the States anyway.  Premixed and all that.  Good to see you getting on out and about around the site.

Yes, Cheerio.......  I am rather British tonight......

 

When I got my B.S.N. , it was before the "pharmacological revolution".  When I took my first AD........I actually thought it would be an easy solution.........to life's difficulties.  Boy was I wrong.  And am I glad.......that I am a very lousy psychiatric patient/client/consumer(oh, just gag me.......I abhor that term). 

 

Love, peace, healing, and growth,

 

mmt

[Kristine]

Hi MMT...or shall I say 'how do you do' 😉 (May as well join you in a British theme!)

Thank you for the info on Dex as a liquid.  I'll try dissolving it first.  I've got enough of the stuff and don't want to buy any more...certainly do not want to add to pharma's profits! I'm also a lousy patient and proud of it! Happy to say I am no longer a 'compliant' patient 😁

Cheerio, Sister and I hope you are having a peaceful night. K

[Kristine]

...forgot to mention MMT...got biopsy results...all clear! 😄

[manymoretodays]

Yes.......dissolving should work well I think.  I attempted to do a packaged liquid, with my oxcarbazepine/Trileptal, and it was not covered by insurance.........so was quite pricey and also would have expired with quite a bit left in the bottle.........  I did really well with just making my own 2 or 3 day liquid supply.

 

........And awesome news.  Yay!  All clear is great.  I shall raise the British flag in celebration!  Tea?

Edited December 16, 2017 by manymoretodays

[Kristine]

Had a big window open yesterday. Hardly any symptoms at all!  I even watched a movie with the family and pets without feeling panicked or irritable! Such a wonderful feeling! Today is not so good, mainly muscular pain, headache, anxiety and feeling flat.  Anyway, I'm just so greatful to have experienced yesterday ☺️

 

I'm not sure how medication payment operates in America.  When you say 'insurance' is that your own private health insurance?  In Australia many medications are partly covered by the pharmaceutical Benefits Scheme (PBS).  However, many medications are not covered at all.  For example, when I was prescribed 'Bupropian' I had to pay full price.  Bupropion is only approved as a smoking cessation medication in Australia not as an antidepressant.  A months supply cost me $180 😳 (That's about $137 US).  I'm sure we all would have been much better off if the money that was spent on these medications and doctor visits went towards multiple holidays somewhere tropical! K.