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neroli: Is this benzo withdrawal, or other drugs interacting

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neroli
Posted (edited)

Moderator Note: link to Neroli's benzo thread: Neroli: Could this be withdrawal symptoms

 

How I wish I’d known BEFORE all this happened what I know now, how I wish there’d been more informed consent, more information, more care and that somehow I’d have found my way to Surviving Antidepressants to understand and be forearmed.  Thank you to SA for the information and support you give to so many.  The “professionals” still seem to be ignoring any hint of these drugs causing damage (in my experience of them anyway).  And I, naively, thought they were like taking an aspirin - more or less benign.  

 

Started Citalopram in 2006 (for depression) took it for a year, no noticeable side effects (but also a very subtle benefit, if there was one). 

 

2007-2011 on and off Citalopram, some side effects when off it (first anxiety attack ever, hmmm, now I wonder if this was withdrawal). 

 

2011 back on Citalopram because of anxious feelings,
2013 report to doctor that I'm very tired all the time and yawning inappropriately. Doctor suggests trying another a-d.

Late 2013-mid 2014, taken through a series of meds.
Sertraline (no improvement)
Effexor (felt like I'd got a heavy flu if I was even an hour late taking the med, gastric problems)
Fluoxetine (panic attack, tension, insomnia, headaches, exhausted), Mirtazapine. BANG - insomnia, anxiety, black circles under eyes, exhaustion, dizziness, severe panic attack, headaches, sore eyes, hot face. Taken to emergency doctor and given Lorazepam, which calmed me down.

July 2014 stopped Mirtazapine (cold turkey, didn't know about severe or long-term, withdrawal effects then, but couldn't continue to take them as the side-effects were so monumental.) Went through acute withdrawal, which felt like I was being fried inside. Then began the long-term stuff - dizziness, nausea, anxiety etc.

February 2016 - having anxiety attacks, caved in and went to doctor. By this time, I’d started to find out more about the potential effects of these drugs and the possibly futile attempt to stabilise on more drugs and was extremely reluctant to re-instate.  But I was in such a state of anxiety I could only think to try it. Re-instate on Fluoxetine - dreadful - bad gastro effects, insomnia, anxiety etc.

July 2016 - fast-ish taper off, after trying half dose for some time and still feeling dreadful.
Med free July 2016 - January 2017.

 

Symptoms that persisted throughout all the times I was off the drugs -
dizziness, unsteady on feet, blood rush from the head on standing (near fainting), sore stomach, gripey wind, heart palpitations, tiredness/exhaustion, tension, on edge, gripping anxiety attacks (these are the ones that make me feel like I'm never going to feel well again and hopeless), sensitivity to noise, other people and stress, tinnitus, dry mouth, sore eyes.

 

Over December 2016 and January 2017 I had two massive panic attacks, one was after a run; I’d never had panic attacks before.  I saw it as part of the long-term effects of the poly-drugging, cold turkey and re-instatement that I’d gone through. Over this period, I’d taken Lorazepam very occasionally and only at half-dose (0.5mg).

 

Then my body collapsed, panic attacks increased, dizziness made me unstable, weak legs meant I could hardly walk, I was unable to shower or shop for myself and had 24/7 suicidal anxiety/akithisia.
February 2017 - referred to psychiatrist, who did a 20 minute consultation (including asking what my birth was like???), and who flatly dismissed my proposal that this was the result of adverse effects of the drugs, and said he thought it was because I missed my mum (who’d died in 2012).

Mid-February prescribed Escitalopram - felt I had no choice but to see if the drugs would even me out, even though I’d read (through this site and other avenues) that re-instatement didn’t always work.  Continued to have acute anxiety - use of Lorazepam increases, although I try to keep it as low as possible.

 

Early March 2017 Nortriptyline added.
Mid February - to April 2017 Zopiclone and Lorazepam PRN - pretty regular use.
April - August 2017 Prescribed Lithium - dreadful - raging insomnia, completely dried out - stopped after a week.

 

Increased Nortriptyline over a number of weeks to 90 mg a day - insomnia eased, started to get 7 hours’ sleep.  Felt weak and exhausted most of the time.  Had used up all my annual and sick leave at work.

 

Crossed to diazepam over many weeks - to 25mg a day in order to start a taper off.

 

I began to be able to work from home, thanks to my employers who accommodated this, and have since increased to three days in the office and two days at home.

 

I’m more mobile, can shop for myself and take care of myself.  Legs still feel like lead and I have to use walking sticks for balance and help me walk.  Have had a CT scan of my head - showed normal brain profile.  

 

This is where I’m at as I write - incremental improvement, very, very slow.   Reducing Diazepam at 0.5mg a week.  Want to taper off Escitalopram as it had no beneficial effect - but now scared that my system is SO messed up, any reduction will send me into a tailspin.  Also, I understand tapering two drugs messes things up if there are adverse effects because you don’t know which taper is causing the problem.

 

My life has been turned upside down by medications that the Dr told me would improve my quality of life.  

Edited by bubble
update title with member's username; insert extra lines at paragraph breaks (Scallywag), added link to benzo thread (Shep), corrected years at member's request (Bubble)

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scallywag

neroli -- Welcome to Surviving Antidepressants (SA)

 

You've definitely been put through the mill of psycho-pharmacopeia.  I'm sorry that you didn't get good advice back in 2007 about how to discontinue citalopram safely and that you've been paying the price for doctors' ignorance and arrogance ever since.

 

I don't know much, if anything at all, about tapering diazepam.  You may want to start an introduction for yourself in the member's only benzo forum to get information from those who have that knowledge. We would strongly encourage you to taper only one medication at a time.  Please read this topic for more information: Taking multiple drugs? Which to taper first. Although you've started tapering diazepam, there's nothing saying you must continue tapering down to 0 before starting to taper escitalopram.  Your symptoms are your best guide.

 

A request: Would you summarize your history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

  • Any drugs prior to 24 months ago can just be listed with start and stop years.
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
  • Please leave out symptoms and diagnoses.
  • A list is easier to understand than one or multiple paragraphs.
  • Link to Account Settings – Create or Edit a signature.

Some topics you may have already read, but I'm posting the links so you have quick reference:

Before you begin tapering -- what you need to know.

Why taper by 10% of my dosage?.

Tips for tapering off Lexapro (escitalopram)

 

What are your symptoms right now?  Some people find it helpful to keep notes on paper of symptoms and the times of dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms.

 

This is YOUR introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community. I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.

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neroli

Thanks Scallywag - good to hear from you.  I will read your information carefully and fill in a signature and also find out how I can edit a mistake in my intro topic.  It's taken me some time to get used to navigating the site - but it's better than a couple of years ago when I thought I'd join and just hadn't got the energy/brain power to work it out!

 

BTW I'm interested in people in Wellington who are having issues with these drugs - despite asking around and advertising on community boards, I haven't managed to meet a real, live person and it makes me feel like I'm the only one in NZ to have this stuff happening.

 

Big thanks to you, Scallywag, and other admins/moderators for the time and effort you put into this forum - that's a massive contribution to helping people with this appalling situation.

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nz11

Welcome Neroli,

I am so glad you have found sa.

Sadly your story is all too common here in NZ. I started to feel a bit emotional after reading and then noticing you are from NZ.

I am so sorry the medical profession has let you down so badly. Your doctor should be deeply ashamed of himself. And that psychiatrist should be fired on the spot. 

I kept reading thinking it cant possibly get any worse and it did, I echo SWs 'you've been put through the mill' boy have you ever.

 

There is a NZ members check in here thread. You might like to check it out.

If you feel you have been harmed in any way by your doctor would you please give serious consideration to making a complaint against him. You could always change doctors first.

In the NZ members thread you will see to whom to complain to. 

Please do write to CARM in Dunedin even if you just copy and paste the above into an a4 piece of paper they need to hear about this iatrogenic harm. 

 

I think you have done very well to go through this and still keep your job ...in fact imo its a miracle.

Many of us have had our jobs ripped from us due to wdl.

 

Please read those excellent links from SW. 

And doing the drug sig is very important so people can see you context at a glance. 

 

You are not alone.

Can I rec a great book ...you can get it from the public library. If you get the one riddled with highlighter it was probably the one I had before I bought and coloured my own.

R Whitaker "Anatomy of an epidemic" 

I'm not really a book person but I found it an easy read and I couldn't put it down.

If there is only one book that you read this year please make it this one.

 

nz11

Heres a very excellent piece by a member on what has happened to our brains.

Brain remodeling

 

And two more informative links

What is withdrawal syndrome

Youtube video, 4 minutes: Healing from antidepressants

 

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scallywag

neroli, members can only edit a post within 60 minutes of when it was originally submitted.  If it's a major error in your medications and dosages, a moderator could and might edit that.  Otherwise, we'll probably let it stand because almost always there are more pressing issues requiring moderator attention. An unintended benefit of that policy:  learning to live with one's imperfections! ^_^

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neroli

Thanks Scallywag - good to hear from you.  I will read your information carefully and fill in a signature and also find out how I can edit a mistake in my intro topic.  It's taken me some time to get used to navigating the site - but it's better than a couple of years ago when I thought I'd join and just hadn't got the energy/brain power to work it out!

 

BTW I'm interested in people in Wellington who are having issues with these drugs - despite asking around and advertising on community boards, I haven't managed to meet a real, live person and it makes me feel like I'm the only one in NZ to have this stuff happening.

 

Big thanks to you, Scallywag, and other admins/moderators for the time and effort you put into this forum - that's a massive contribution to helping people with this appalling situation.

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neroli

I've been tapering down from 25mg Diazepam at the rate of 0.5mg a week, and have been making my own water suspension and syringes to micro-taper each week.

 

This has not been entirely comfortable all the way - always an underlying anxiety and tiredness.  I realise, though that I've not had some of the more debilitating experiences some people have.

 

I reached 14mg last week and started the micro-taper to get me to 13.5mg.  I've experienced more anxiety and depression, along with further loss of energy and increased apathy, weepiness and wondering how I can carry on.

 

I'm wondering if this is possibly withdrawal symptoms from the benzo taper, or whether now that I'm getting lower on the dosages, the other meds I'm on are kicking in and producing added side-effects.

 

Anyone got any experience, or ideas about what could be going on?  I'm frightened that I won't be able to carry on looking after myself, or going for walks, or doing the part-time work I've got if this gets much worse.

 

I'm holding the taper for the moment - at just under 14mg - to see if things even out over the next week.

 

Thanks, Neroli

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Rosetta

Hi, Neroli,

 

I'm sorry you are feeling bad.  If I were you I would hold all the doses right where they are until the Moderators here can take a look at your question.  They are very, very helpful, but they are volunteers.  So, you might not get an answer right away.  They will have some questions, too.  They will want make sure there is not anything going on that you might think is unimportant before someone gives you an idea of what she would do in your position.  

 

I'm glad you found SA and Welcome!

 

Peace,

Rosetta

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neroli

In January 2017, I had a physical breakdown - intense dizziness, weak legs, unbalanced/woozy feeling along with myriad other symptoms.  I knew it was a bad wave from the mess created by the medications I'd been taken through and CT/fast taper that I didn't know would lead to long term adverse effects.  I knew it wasn't a good idea to go back on drugs if I could get through the wave but a month or so of intense anxiety/akathisia led me to the psychiatrist's door and I've been on meds. for about a year now.  They have "propped me up".

 

However, the weak, leaden legs feeling (like they are as tight and tired as they would be after a 9-hour hike in hilly country, all the time) and lack of sustainable energy has continued throughout - sometimes I feel as though I'm getting more energy and strength back and can do an hour's walk, but the lead legs never go away and it can worsen again.  I'm using walking sticks to help.

 

Has anyone had any experience like this and did the weakness resolve over time?  I'm so worried I've been totally wrecked by the drugs that this how my life will be from now on.

 

Thanks, Neroli.

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neroli

Thank you, Rosetta.  Kind of you to reply.

 

Wish you well,

Neroli

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Rosetta

Hi Neroli,

 

How are you feeling?

 

The mods seem to be working their way through Tuesday's crop of new members.  They will get to you.  Don't worry.

 

NEROLI SAID (on another thread):

 

"In January 2017, I had a physical breakdown - intense dizziness, weak legs, unbalanced/woozy feeling along with myriad other symptoms.  I knew it was a bad wave from the mess created by the medications I'd been taken through and CT/fast taper that I didn't know would lead to long term adverse effects.  I knew it wasn't a good idea to go back on drugs if I could get through the wave but a month or so of intense anxiety/akathisia led me to the psychiatrist's door and I've been on meds. for about a year now.  They have "propped me up".

 

However, the weak, leaden legs feeling (like they are as tight and tired as they would be after a 9-hour hike in hilly country, all the time) and lack of sustainable energy has continued throughout - sometimes I feel as though I'm getting more energy and strength back and can do an hour's walk, but the lead legs never go away and it can worsen again.  I'm using walking sticks to help.

 

Has anyone had any experience like this and did the weakness resolve over time?  I'm so worried I've been totally wrecked by the drugs that this how my life will be from now on.

 

Thanks, Neroli."

 

ROSETTA responds:  Yes!  I had the "lead legs" feeling.  You describe it well.  It does go away.  I, personally, think that it's happening because of WD, of course, but more specifically because the brain is re-wiring itself -- healing -- and because of that re-wiring it is sending out a lot of signals that are not warranted in the circumstances.  This random, nonsensical series of inappropriate signals and the results of them can be frightening at first, but after a while you will start to get used to it.  It becomes more frustrating than frightening.

 

The worry about long term damage is very, very common amongst us.  Fortunately for us, the brain is perfectly capable of changing and rebuilding to go back to what Altostrata calls "factory settings."  It takes a while, and it's a crazy ride, that's true, but we are so lucky it happens.  The tapering process (which I did not get the chance to try) makes it so the changes can happen slowly and with a lot less trouble and distress to the brain.  This makes it so there are fewer symptoms and they are less bothersome.

 

I, too, have had that feeling of having been on a long hike although I hadn't been able to walk very far at all.  The healing isn't linear.  So, don't get discouraged if a symptom returns.  It will go away.  There are "typical" symptoms of WD that many people experience, but the timing of the symptoms is different for everyone.  There are also symptoms almost no one experiences and others almost everyone experiences.  

 

Dizziness, lack of balance, weakness in the muscles, wooziness -- I think these are all fairly common.  Low blood pressure upon standing such that I lose vision and have to sit down or hold the wall is common for me, but it doesn't happen everyday.

 

I believe that the Zoloft I took after my cold turkey (CT) from Celexa "propped me up," too.  So, that's a very astute observation on your part.  The fast taper of Zoloft is what was the most difficult.  It's still not fun, but I'm not completely debilitated.  I have healed a lot so far.

 

Peace,

Rosetta

 

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neroli

Thank you so much for responding, Rosetta.   It means a lot to have someone make contact and share their experience - especially when it coincides with symptoms that one is experiencing.  It means so much that I am just about drowning in tears as I write - somebody has cared enough to take the time to write, and also to offer encouraging words.  There are times when this stuff pushes me right to the edge of whether it's worth carrying on.  I'm 61 this year and have been affected by these drugs for 10 years already - and there are several more years of coping/tapering to go, which will push me up to near my seventies.  I already envy the "pensioners" around me that can overtake me with no difficulty and have a laugh and social times with their friends.  I do know that there are people who are in more difficult circumstances than I am - but this radical seismic shift is like being thrown into another universe, and I have difficulty coming to terms with it, particularly when things take a plunge and Ifeel I've been robbed of any progress I thought I was making.

 

You've had the lead legs, too.  It's no fun and makes living (even things like getting groceries) unpredictable and challenging.  I'm glad they seem to have gone for you - did it take a long time?  Glad to hear that you have healed a lot.  There is some light, then.....

 

Heartfelt thanks

 

Neroli

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Rosetta

Neroli,

 

I'm so sorry you have been put in this position!!  It's going to be okay for you.  You have the chance to get your taper under control.   

 

You have tapered 2 mg per month (0.5 per week) from 25 to 14.5 mg of diazepam?  The Mods will need to know when you started that med, and when you started to taper.  Have you been taking it since March 2017? Or did you just start Diazapam this month? That couldn't be or you would not be down from 25 to 14.5 yet.  Maybe your signature is off a bit? They might want to know if you think you need to taper that one first and if so why you feel that way.  They will be curious when you stopped lorazepam and how long you took it.  They will confirm facts that might seem obvious, but it's a double check to avoid mistake if you know what I mean.

 

It could be that when the Mods get you going in the right direction the lead legs disappear with the fatigue, too.  If I had tapered, I could have held doses until the symptoms ceased or lessened and avoided a lot of problems.  The muscle issues you are having may be from nothing more than the fact that you tapered too fast "for you."  Some people can go faster than others as I understand, but I didn't taper -- not really.  So, I can't tell you how to do it.

 

(I thought I did taper the Zoloft, but I did it the way the doctors recommend, not the slow, safer, easier way that the people who manage this site.  I had delayed onset WD.  I didn't have moderate or severe symptoms early enough to find out about tapering.) 

 

The Mods here will help you every step of the way.  They will help you decide when to taper more, how much to reduce each time, and how to decide whether your symptoms are too many or too much.  There's a learning curve, but they will let you rely on their advice as much as you need if you can give them the information they need to help you.  That's the key.  There's a checklist of symptoms that you can keep at home, and you can write down in a journal which you have and a symbol for the intensity of each.  Keep that religiously.  Then you can look back and tell the Mods how it's been going before you decrease the dose again.

 

Here's one thing I've learned -- One can't compare himself to anyone else when it comes to symptoms or duration of symptoms -- not even if one has CT'd.  It's very random for the mild to moderate symptoms and many people never have severe symptoms at all.  This plays out for each person differently except that when a person tapers and gets symptoms he can control the taper, slow down, hold the dose or even up dose a little to have quality of life.  The idea is to minimize symptoms with a slow taper and slow it down more when the symptoms are too many or too intense.  The lower the dose the slower people tend to go as they start to notice that symptoms are more problematic on lower doses.

 

That said, I'll answer your question: My lead legs were around for only a few weeks or a couple of months, but they were the least of my problems at the time because I didn't taper.  I practically Cold turkeyed one med, Zoloft, and, actually, I did CT Trazadone in Feb 2017. 

 

Oh I know what you mean about seeing other people and feeling 90 years old!! My mother in law is 75, and she asked me to play golf.  I can't.  There's no way.  I'm only 49.  I will play again in time.

 

Rosetta

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nz11

Neroli a gentle reminder its only one intro thread per person. There are reasons. 

 

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ChessieCat

Hi neroli,

 

I've merged your two intros into one.  Each member has 1 Intro topic where they can ask questions and journal their progress.  This keeps your history in one place and makes it easier for members to read other members situations and provide support for each other.

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neroli

Thank you, ChessieCat, oh dear, I'm not getting the hang of how to post.  I'll go back and look at the instructions and hope to work it out.

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Rosetta

Neroli,

 

By the way, when I said "your signature might be off a bit," I probably confused you.  I meant "drug signature" that shows under all of your posts to give your history of all medications.

 

If you need to change your "drug signature" try this link http://survivingantidepressants.org/index.php?/settings/signature/

 

(I hope it works.). You should put any other prescriptions or supplements that you are taking there, too, such as statins or blood pressure meds, everything.  They all interact with each other, and the Mods take those into consideration.

 

One other idea.  For relief from anxiety, you can try each of these supplements, one at a time for a few days in SMALL doses to see if they help you Or make things worse

 

1. Omega 3 fish oil supplements (best if high quality, refrigerated) I haven't try this yet, but you can take a look at barleans.com to get an idea of what's out there, and maybe you can find a New Zealand or Australian producer.

And 

2. Magnesium citrate as an oral supplement *** use a small dose of this as it causes diarrhea***

(Mine is called "Calm" by Natural Vitality & it makes a fizzy drink; I can tolerate about a 1/4 or 1/2 dose which is 75 to 150 mg)

OR

3. an Epsom salt bath --allows Magnesium to be absorbed through the skin.  Again -- a small dose -- not the recommended dose on the package

 

Generally, the wisdom on SA is that all other supplements are potentially problematic and might make you feel worse at least when you are already dealing with symptoms of WD.  Then again, if you are taking some kind of supplement that affects neurotransmitters, sometimes those need to be tapered!  (Can you believe it?). So, for example St Johns Wort is a common supplement people try when the AD doesn't seem to be working.  L-tryptophan and "5HTP" (something or the other) are others that people often show up here having tried.  Please make sure everything is in your drug signature so that you can get the proper advice right off the bat.

 

And, as I'm finding out, caffeine should be tapered, too,  Oh, joy!

 

Goodnight or perhaps Good Evening,

Rosetta

 

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neroli

Hello ChessieCat

I think I may have worked things out.

 

So, my intro. story was actually

 

 

Then I wanted to post about the Peter Gotsche/Robert Whitaker visit to NZ so I went to the NZ thread and stated a new topic there but it didn't seem to go in that thread and you reposted it from Events Actions etc.  

 

So I went back to the instructions for the Intro section and it said this is where you can put updates and ask questions.  I asked the two questions - 1) about banjo withdrawal and 2) about lead legs as two separate topics (ie they are not conjoined).   But that seems to have meant that I'd now got three intro topics and you've merged the latter two to be my intro.

 

Should I have gone to the Benzo forum and created a new topic there to ask the benzo question, and gone to another forum to create a new topic asking about the lead legs - such as the Symptom forum?

 

Apologies if I'm being a dunce about this - it's taking me a while to get used to the site and how it works.

 

Thanks

 

Neroli

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ChessieCat
13 minutes ago, neroli said:

1) about banjo withdrawal

 

Don't you love auto correct?!?  I think this is meant to be benzo?  Unless there is a new type of drug on the market ;)   What is your particular question about benzo?  It might be able to be answered here on the main forum.

 

13 minutes ago, neroli said:

lead legs

 

The site has many existing topics and we try to keep the information about one thing in one topic.  To search the site you can use the search bar at the top right of the main page or you can use google and add survivingantidepressants.org to the search term.

 

There are several existing topics about legs

 

legs-like-lead-adrenaline-rush-through-body-and-feel-faint/

 

non-drug-treatments-for-restless-legs/

 

foot-and-leg-cramps/

 

weakness-in-legs-arms-or-body/

 

arms-legs-feel-like-theyre-not-attached-to-body/

 

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neroli

Thanks, ChessieCat

 

Auto correct drives me bananas - but I did laugh a little when I just saw it said banjo.  I've been playing too much banjo and now I"m withdrawing - with bad effects! :)

 

My benzo question is

 

So, you're saying the Intro forum is the main forum - is that right?  But how can I add new content or question without it then being a new Intro piece?

 

And thanks for the tips on searching - I'll look at the links you've provided, that's kind of you.

 

Many thanks

 

Neroli

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ChessieCat

SA's taper recommendation is no more than 10% of the previous dose followed by a hold of about 4 weeks to allow the brain to adapt to not getting as much of the drug.  Some members find that they need to go slower than this.  Once you reduced under 20mg, 0.5mg per week ends up being more than 10% of the previous dose.

 

However this needs to be taken into consideration:

 

Taking multiple psych drugs? Which drug to taper first?
If you're not having an adverse reaction from the other medications, taper the most activating drug first. This is usually an antidepressant or stimulant (ADHD drug).

 

I also recommend that you put your drugs into the Drug Interactions Checker and copy and paste it in a post in your Intro topic.

 

Are you experiencing anything that is listed when you do the interaction check?

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Rosetta
11 hours ago, neroli said:

Thanks, ChessieCat

 

So, you're saying the Intro forum is the main forum - is that right?  But how can I add new content or question without it then being a new Intro piece?

 

May be I can help a bit.  Do I EVER know how confusing this is at first!  For instance, the title of my personal thread is the same forever. The title cannot alert anyone to the content of my most recent question, and I think that's why it was very hard for me to grasp the idea of keeping all my questions under one thread at first.

 

Having everything about a person in one thread is unimportant on most other forums.  My intro here is like a medical record.  The Mods are trying to get their advice right the first time.  It's like when a doctor actually looks at a medical record (shocker!) for a while before he meets the patient who has a thyroid condition, and then he does NOT prescribe an AD for depression but recognizes that the thyroid medication is in need of adjustment.  

 

The benzo people, like you, can start a separate benzo thread for tapering the benzo.  I'm sure there's a reason for that.

 

If I am writing on someone else's thread about my WD experience in order to help that person see that he is not alone I often copy part of my post to that person and put it in my own intronthread, too.  It might make a good journal entry to remind me of my own symptoms and how they felt or when they occurred.

 

There's not much the Mods can do for me because I CT'd, and I couldn't reinstate the med.  They can, at the most, tell me I have reason to be hopeful and tell me to try magnesium and learn to meditate, but you are a project for them.  They need your story in a file -- Your intro thread.

 

How are you feeling today?  My God, you had Akathisia!!  That nearly killed me.  I hope it's subsided for you.

 

Peace,

Rosetta

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neroli

Helo Rosetta

 

Thanks for checking in and the info. on posting, I'm sure I'll get the hang of it and the advice from ChessieCat about doing a google search for a particular topic is useful too.

 

I've just had a go at editing my signature to make it more specific as you suggested; hit the Save button but it still reads as the old signature - maybe it has to be moderated first - or maybe it's not editable.  Oh well.  I would have thought it should be editable because as the process goes on, the amount of drug taken will lessen, hopefully.

 

Yes, I used the word akathisia because when I had the physical breakdown I got 24/7 "anxiety" but I kind of knew it was a "chemical" anxiety, so I tried the word akathisia with the Dr and Psychiatrist to differentiate it from "everyday" anxiety.  This had never happened to me before, at this level and intensity, and I knew from my research it was to do with the legacy damage from the rapid cycling through different drugs by my Dr, then the CT from all these and then trying Fluoxetine and rapid taper off it later.  The psychiatrist didn't accept my use of the word, and the Community Psychiatric Nurse, who tried CBT on me for "anxiety" said that they didn't want to get into a war of words with me saying it was akathisia.  In other words, "we aren't taking any notice of what you think it is".

 

It was the benzodiazepines that got me through it - but I still have a low level of anxiety and can feel it ramping up if there are stresses to do with work, or I have an extra thing to do, like I had to have a root canal recently which disturbed my routine of commute to work, do work, come home, eat, go to bed and I was thrown a bit afterwards.  I did ask the dentist to use a non-adrenaline anaesthetic, so I hoped that would minimise any nervous system reactions.  Of course, now I have to taper of the benzo.

 

I hope you go well with the drug-free course you are on, it can be very uncomfortable and frightening (well, it was for me when I was drug-free) - so here's to more windows.

 

I went for a shortish walk earlier - about 3/4 hour - and I can feel my legs tightening again. So frustrating and worrying.  But hey. at least I did get out there.  Can't get out in the late morning/afternoon because we're having a hot wave down here in NZ which totally wipes me out and I get the shakes if I try too much in this heat.  But I guess you are trying to keep warm...

 

Warm wishes

 

Neroli

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neroli

whoops, just checked temps for CA and you're quite warm yourself!  I think I mis-read you as being in Canada.

 

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nz11
38 minutes ago, neroli said:

Yes, I used the word akathisia because when I had the physical breakdown I got 24/7 "anxiety" but I kind of knew it was a "chemical" anxiety, so I tried the word akathisia with the Dr and Psychiatrist to differentiate it from "everyday" anxiety.  This had never happened to me before, at this level and intensity, and I knew from my research it was to do with the legacy damage from the rapid cycling through different drugs by my Dr, then the CT from all these and then trying Fluoxetine and rapid taper off it later.  The psychiatrist didn't accept my use of the word, and the Community Psychiatric Nurse, who tried CBT on me for "anxiety" said that they didn't want to get into a war of words with me saying it was akathisia.  In other words, "we aren't taking any notice of what you think it is".

Wow Neroli

Full credit to you for doing this. Well done on standing up to them.

You did amazing. 

 

It would be interesting to request a copy of your file notes to see what they have covertly written about you. 

I did this. What I discovered had been written I found very disappointing.

 

I have never heard a doctor use this word akathisia ...no doubt they refuse to because akathisia is doctor caused harm whereas anxiety is a patients faulty being.

Make no mistake about it the moment you use the word 'anxiety' you have lost all voice. It will also be used against you.  It will also allow doctors to dodge any responsibility for harm.

Isnt it odd how they accept peoples use of the word 'anxiety' without any questioning or clinical assessment but the moment you use the term akathisia they turn nasty.

 

Be interesting to ask them to define akathisia and what they think causes it.

 

Neroli just wanted to say ....you are so clever!

 

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nz11

Just been thinking....

What do you think about making a complaint against them to the HDC. 

 

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nz11

Just thought I would share my experience.

I went in to the pdoc clinic to make a complaint about paroxetine.

I left with a covert diagnosis of stress and an attempt to push drugs on me. 

When I requested and got  a copy of my notes and saw they wrote stress I wrote and asked them to give me a copy of the clinical assessment for that. And how was that diagnosed. For I had no stress whatsoever in my life it was totally stressless name me one stressor that I had in my life. They wrote back and said there was no clinical assessment it was just what the pdoc thought. So I wrote back and told them that it should be deleted because I went there to make a complain not get a diag-nonsense. And if they aren't going to remove it to then at least get it right  and change it to protracted ssri withdrawal. Guess what ? They wrote back and refused to change it! I was now corresponding in writing and refusing to deal face to face. When I asked them why they had not filed an adverse events report in terms of my pssd complaint they wrote back and said that I had to come and see them regarding my ptsd !! I wrote back and said I know nothing about ptsd what are you talking about. Please correct this mistake. In the end they had to correct that as I referred then to my letter were it talked of pssd.  

See how they twist things even when its done in writing. 

These people don't listen they cant read and they are stupid. How they passed anything academic is beyond my understanding. 

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nz11

At the very minimum please consider writing a complaint to CARM in Dunedin.

 

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neroli

Thanks, nz11.  I got the term from David Healy's RxISK.org site, and other places where I've seen him use it -it seemed to fit.  But, as you probably know, as soon as you say you've done some research on the internet there's a kind of "la-la-la, fingers in ears" response.  I have tried talking to them on an adult level many times and been treated like an infant.  It's amazing.  And so much power they hold - like the psych introducing the idea of ECT on about my third visit to him because I was suicidal with the akathisia.  Just gut-wrenchingly SOOOOO wrong and frightening.

 

I have thought a number of times about asking to read my files but I'm chicken about doing that at the moment (even though I have every right to see them).  The psych is going on sabbatical soon - if I have the energy I may try then.  I have a feeling there have been communications between him and my doc that have influenced things.

 

Oh, and when I went for a head CT scan, I got the report emailed to me - one of the symptoms it listed was paranoia - I'd never mentioned it, nor was I acting in a paranoid way.  When I questioned this with my Doc, she said there are loads of mistakes made in medical records.  Again SOOOO wrong - and there's a file on me that has that on it.  I asked an advocate for help getting it put right and she said it would take a lot of effort, and even then it wouldn't be redacted or changed, just a note saying that the patient didn't agree with the paranoia diagnosis.  That'd probably make them think I was more paranoid!

 

I am keeping in mind your suggestions to write to CARM and other bodies - one day it will happen - I just have to get my energy and bravery up a little bit.

 

One thing I did do was write to David Healy about my situation and he was good enough to answer and give some confirmation of my thinking.

 

I hope your recovery is going well - maybe you're even quite stable these days - your signature is enigmatic :)

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neroli

Re. your post about your experience - disgusting.  Too much power in their hands.  Utterly disgusting.  They may sit in modern little offices with sofas and floral curtains and all that - maybe plastic toys for the children - but I get hints of victorian asylums and restraints when I hear stuff like this

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nz11
52 minutes ago, neroli said:

I have thought a number of times about asking to read my files but I'm chicken about doing that at the moment (even though I have every right to see them).  

I hear what you are saying but you are right in that you have every right to see whats yours.

Just simply write to them requesting it. You have to request it in writing anyway then they will send you the official form that you have to fill out to request it.

So just write to them or not even them write to your district healthboard and request first time up the form needed to request a copy of your file notes and all correspondence. Funnily one of the questions on the form is 'why are you requesting this info. ?' I just said cos its mine and I'm entitled to it! 

They then sent it in the mail.

So there is no people contact required here. 

 

I did this process so you wont be the first.

 

I found that you cant get into talking about what you have read on the internet. In fact one pdoc offensively without me even mentioning internet said "no doubt you have looked on the internet and read about blah blah blah.." 

I reckon a better approach is to find the peer reviewed journal articles and hand that to them. I gave them the peer reviewed journal article titled  'Psychiatry is bullsh*t' and said please put this in my file! I think the author was Niall McLaren . Well worth reading. 

There is a good one out there I recall heading is ...agents of trauma i'll see if I can find it. Look in the journal section here for ones on akathisia. 

 

Yeah they refuse to change errors saying 'its now a legal document' so I said that if its a legal document and its wrong that would make it a fraudulent document would it not. They just write back saying we are no longer corresponding. 

 

What you can do is ask for statements or things to be attached to said incorrect statements to 'always be read with' 

That's what I did. 

So when they wrote in my notes that when my mother was pregnant with me she took thalidomide all because I said I was heartbroken that I had been given  a mental thalidomide type poison. And because of the thalidomide scandal my mother in pregnancy resolved ahead of time to refuse any drugs from doctors if offered.

They refused to remove their incorrect statement  but agreed to attach a letter from my mother to be attached to and always read with stating that she had never taken thalidomide.

 

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Rosetta

Neroli,

 

Yes, Southern Cali was unseasonably warm yesterday.  The high today is 60.  The Gulf Stream is all wonky, and we are getting very little rain.  We had 4 years of drought then rain last year, fires and mudslides this year and no end in sight for more drought.  I have a man coming Tuesday to bid a well here as we can't afford to keep our bushes alive any longer.  We keep clearing out dead ones to avoid fire, and it's starting to get ridiculous.  The trees can reach the water table, except for the citrus as they are on a little rise, but everything else has to go or be watered.

 

Believe it or not, after our last presidential election my husband suggested we look into going to NZ!!  It's lovely.  I thought that would be a bit too far from home and voted for Canada (British Columbia), but we are staying put for now and watching carefully for signs about the future.  Canada doesn't let immigrants choose which province they move to.

 

I see that nz11 is looking in on you.  (Hi, NZ.).  He's right about why the docs don't want to hear the word akathisia.  It's synonomous with liability and responsibility and the truth: these drugs are little Trojan horses.  I haven't been back to any doctor since I was given Trazodone and led to believe it was a sleeping pill.  They can't be trusted.  I hope you will think carefully before getting a flu shot, too.  That can't be good for our destabilized systems.

 

It's probably good that you had a benzo during the aka.  I didn't.  I can't say I regret it now, but I'm still alive, too.  I'm glad that I didn't know that could help.  I might feel differently if I had tried to do something rash.

 

You are in good hands here, Neroli.  It's so nice to "be with" people who understand why one can't function normally.  It's impossible to talk to people who don't understand.  They are so threatened by the concept that a pill can't fix whatever is wrong.  If one starts talking about doctors being ignorant and selfish -- whoa Nellie!

 

Your walk was just the right thing to do.  You have to balance that with the discomfort of the stiffness.   I need to make that a priority, too, instead of hiding out on this forum.  The saying here is that gentle walking calms the nervous system.  It's probably my key to more progress and yours, too.  I have a 56 acre park across the street.  So, I have no excuse now that I don't feel insane any longer.

 

I'm hoping to start living again a little bit at a time.  I have a 6 year old, and I want her to get back to a more normal life.  I'm not very good at staying away from the forum, but I need to get out more.  So, I'll pop in every so often.  

 

If you wait too long for an answer from the Mods keep "asking."  Write "bump" in your post, hit send and your name will pop to the top of the list.  They might tell you to sit tight where you are and let your system settle until you are symptom free for 30 days.  (I say that because I've seen them give that advice over and over unless there a dangerous drug interaction issue, but there is too much I don't understand about this whole matter for me to give you advice.) If you get too sick and get worried tell them your symptoms and your state of mind and see if there's another way.

 

Have a nice day,

Rosetta

 

 

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neroli

Hello Rosetta

 

I wanted to write back sooner but haven't had the energy - I've been getting to grips with this site and the information I've been sent and wouldn't you know it I went down the internet labyrinth instead of keeping on task.  Thank you for all your tips and advice about the site, it's helping me get more used to it.

 

You write beautifully - so well put together and so on point.  How you manage it is a miracle.  I've gone back and read your intro. and follow-on posts and I am amazed at what you have been through and dealt with.  So so sorry that you've had this to go through.  It just isn't fair (I know, life isn't fair, but IT'S JUST NOT FAIR).  Not fair, at the very least, that we don't get believed by the professionals we turn to for help.

 

We're having similar weather conditions here, droughts and then sometimes very heavy rainfall which causes land slides and road closures.  We're also possibly a bit seismically similar too, having had a number of big quakes over the past few years.

 

Funny you should say you're husband thought about NZ after Trump - I understand the NZ immigration website got a lot of traffic after Brexit and your presidential election.  I agree with you that it's a long way from your social supports and right now you probably need them particularly.  I'm English by origin and came over here through family circumstances.  It's a great place and beautiful but I too find I pine for home at times.  I'd thought I might go back to the UK but this episode has put the kibosh on that.  Perhaps that's a good thing because it would have been a difficult decision and move after 30 years being in this country - rosy glasses can make the old home seem like where one fits but the UK has certainly moved a lot in the intervening years and it wouldn't be as cosy as I imagine it.  For a kick off, I'd have to make a whole new social circle and I'm hanging on to the one I've got here by the skin of my teeth with this "condition".  So, the upside of that is that there is no decision to make - I stay where I am and make of it what I can.

 

The benzos got me through a very tough time with the anxiety/akathisia - 24/7 pacing and not being able to rest was no fun.  But it was a Faustian pact - I have to get off them now and SLOW tapering is advised.  I can feel underlying anxiety and worry that when the benzo dose is low, the anxiety/akathisia will come back.  So I reckon you did well to get through without.  Really well.

 

Best of luck with venturing into the material world a little more - and "rehabbing" from the forum.  It's good in that it's got a lot of information and supportive people and then you can spend hours on it, which may override attempts to get out a bit more (saying this more to me than you!).

 

Warm wishes

 

Neroli

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neroli

Drug interaction checker report from Drug Interactions Checker , as suggested by ChessieCat

 

Interactions between your selected drugs

Major

nortriptyline  escitalopram

Applies to: nortriptyline, escitalopram

Using escitalopram together with nortriptyline can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should contact your doctor immediately if you experience these symptoms during treatment. In addition, combining these medications can increase the risk of an irregular heart rhythm that may be serious and potentially life-threatening, although it is a relatively rare side effect. You may be more susceptible if you have a heart condition called congenital long QT syndrome, other cardiac diseases, conduction abnormalities, or electrolyte disturbances (for example, magnesium or potassium loss due to severe or prolonged diarrhea or vomiting). Talk to your doctor if you have any questions or concerns. Your doctor may already be aware of the risks, but has determined that this is the best course of treatment for you and has taken appropriate precautions and is monitoring you closely for any potential complications. You should seek immediate medical attention if you develop sudden dizziness, lightheadedness, fainting, shortness of breath, or heart palpitations during treatment with these medications, whether together or alone. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

nortriptyline  diazepam

Applies to: nortriptyline, diazepam

Using nortriptyline together with diazePAM may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.Switch to professional interaction data

Moderate

diazepam  escitalopram

Applies to: diazepam, escitalopram

Using diazePAM together with escitalopram may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

No other interactions were found between your selected drugs.
Note: this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist.

 

These are the symptoms I noted in my intro: 

Symptoms that persisted throughout all the times I was off the drugs -
dizziness, unsteady on feet, blood rush from the head on standing (near fainting), sore stomach, gripey wind, heart palpitations, tiredness/exhaustion, tension, on edge, gripping anxiety attacks (these are the ones that make me feel like I'm never going to feel well again and hopeless), sensitivity to noise, other people and stress, tinnitus, dry mouth, sore eyes.

 

Over December 2016 and January 2017 (got the dates wrong in my intro) I had two massive panic attacks, one was after a run; I’d never had panic attacks before.  I saw it as part of the long-term effects of the poly-drugging, cold turkey and re-instatement that I’d gone through. Over this period, I’d taken Lorazepam very occasionally and only at half-dose (0.5mg).

 

Then my body collapsed, panic attacks increased, dizziness made me unstable, weak legs meant I could hardly walk, I was unable to shower or shop for myself and had 24/7 suicidal anxiety/akithisia.

 

Based on that there are similar symptoms mentioned in the drug interaction checker - but I've had them whether on or off drugs, so not sure it indicates any untoward interactions with the present drugs I"m taking

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ChessieCat
2 minutes ago, neroli said:

Using escitalopram together with nortriptyline can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea.

 

Q:  Are you experiencing any of these symptoms?

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neroli

Hello ChessieCat

 

I've got lead legs and some weakness/stiffness in my legs - but that started before I was put on these drugs.  I get a bit of shakiness but that goes when I've got enough benzo in my system, so I've put that down to withdrawal from benzo.

 

When I was fast-cycled through four A-Ds in 2013-2014 I remember feeling very cold even with layers of clothing on and I got panic attacks and anxiety.  I reckon there could have been some serotonin syndrome then.

 

I've had blurred vision off the drugs and sometimes now but Nortriptyline is noted for affecting eyesight, so I've had new prescription lenses.  I'm not concerned there's any Syndrome.

 

But I do wonder, having read some more stories on SA, whether I'll be able to get off my current A-Ds completely - I've had two crashes (admittedly after CT and fast taper) and I cannot afford to have another crash.

 

The benzo has to go, as it's perceived as the "bad" drug - hopefully down to 0, unless I can't manage that and I get special dispensation to have a maintenance dose (if there is such a thing)

 

Neroli

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