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neroli: Is this benzo withdrawal, or other drugs interacting

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Rosetta
2 hours ago, neroli said:

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)

 

Are you saying that the doctor is threatening to take this away from you?  The dispensation would come from the psychiatrist?

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neroli

No, the Doc's not threatening to take it away - the Doc and PDoc have kind of agreed to tapering the Escitalopram and only doing one drug at a time - I just don't know how they would go with me being on benzo for 2 1/2+ to get off ESCI.  Nor do I want to be on it for that long.  I'm still considering what to do - it's a bit like a snake eating its own tail!

 

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Rosetta

I see.  NZ has universal healthcare like the UK?  Or is it anything like the US?  Can you doctor shop? Do they have autonomy?  I'm wondering how people avoid the problem you are suggesting you may face.  Maybe NZ11 would have ideas.

 

Thank you for your kind reply above about my writing.  What a nice compliment.

 

No worries about writing back quickly; I do know what you are going through.  The fatigue will require rest anytime you can catch some.

 

Right, you know what it's like to be an expat.  It's not really what I want for my life.  I feel like an expat in my own country as it is because of the drastic changes over the last 20 years.  This is not the country I was raised to believe it was.  Still, here I don't have the challenges of moving abroad where I would stand out as an immigrant, would not get the jokes, would have an accent, would always be "different" even in British Columbia, and same would be true for my daughter.  We will stay unless it appears to turn from "bad" to "worse."

 

I hope you have a good day.  I'm going to bed -- late!

 

R

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neroli

nz11 - I just sent in a CARM report electronically - feel a bit "exposed" cos it needed my details - but hey, I'm edging my way to getting braver about doing stuff like this

 

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nz11

Good for you.

Don't worry about it they wont come and beat you with a stick.

They will just reply with a standard letter...something like...

 

Sorry to hear of your recent difficulties. Antidepressants are very useful and have helped many people. blah blah blah...

 

I like the idea of writing a letter and forcing them to write a letter in reply that way it sits on someones desk and they are forced to read it and organise the standard nonsense reply letter.......rather than receive an email reply. Anyway you are gaining the strength to push back on these arrogant clowns. Great. Id love to  know their reply if you don't want to post it then pm me id be interested in seeing if their std letter reply has deviated from the usual ignorance. Sadly I think the 30 or so they have received from me has not had any influecne whatsoever.

 

 

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neroli

Hello ChessieCat

 

I know you volunteer your time and probably have more urgent things to deal with but is there a chance that you could change the title of my intro. to what it was when I first posted - "The Dr told me it would improve my quality of life".

 

I just think that would be more appropriate as I'm not on here for benzo only- it's the general mess of damage from SSRI/SNRI drugging and prescribing protocol which I think is important.

 

Thanks for all you do.

 

Neroli

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nz11

Neroli your new title sounds like the beginning of an Tui ad.

 

Wonder if the doctor still believes that. 

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kesh

I just got my intro title changed too.

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Rosetta

Hi, Neroli.  Hope you are well! -- Rosetta

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neroli
On 1/23/2018 at 1:46 PM, nz11 said:

Neroli your new title sounds like the beginning of an Tui ad.

 

Wonder if the doctor still believes that. 

Hi nz11 - yeah, right!  I'm not sure what the Dr believes now but I've sent her the link to http://cepuk.org/2018/01/24/appg-prescribed-drug-dependence-welcomes-announcement-review-prescribed-drug-dependence-withdrawal/.  And I sent it to the psychiatrist I was seeing.

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neroli
On 1/23/2018 at 1:56 PM, kesh said:

I just got my intro title changed too.

Hi Kesh

 

I've read a bit of your story and drug history.  Some similarities to my own - med. changes and things being added on top.  Doc gave me Metorprolol to help

(it didn't, so I took about 4 and then stopped) with anxiety/akathisia caused by what I think was super-kindling due to the prescribing protocols my doc. used taking me through 4 different a-d meds and then I went cold turkey - didn't know about withdrawal effects then or danger of CT.  Then there's been more medication meddling - leading to a physical breakdown last year.  Have been propped up by Escitalopram, Nortriptyline and diazepam since and am trying to reduce.

 

Wishing you the best with your decisions and progress.

 

I didn't manage to get my title changed.

 

best

 

neroli

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nz11
1 hour ago, neroli said:

Hi nz11 - yeah, right!  I'm not sure what the Dr believes now but I've sent her the link to http://cepuk.org/2018/01/24/appg-prescribed-drug-dependence-welcomes-announcement-review-prescribed-drug-dependence-withdrawal/.  And I sent it to the psychiatrist I was seeing.

Good for you 

I sent a copy to CARM.

Be interesting to see what feedback you get if any.

 

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neroli
3 hours ago, Rosetta said:

Hi, Neroli.  Hope you are well! -- Rosetta

Hello Rosetta

 

Good to hear from you.  Hope you are doing ok.

 

I've held my dose of diazepam at 14mg for a couple of weeks now - I was getting pretty depressed, weepy and apathetic - and it was suggested on the benzo forum that I was tapering rather fast.  Holding seems to have helped and I'm feeling better.  I even went out to dinner with a friend last week, ate Thai food and stayed out until 8.30pm!  I am usually in bed by 7 and after a bit of Netflix or emailing (I use a filter for night viewing so that blue light thing doesn't affect my sleep) I settle down about 8.45 to sleep.  So that was quite a step for me.  May more of those happen.

 

Still got lead legs and shakiness before I'm dosed up on Diaz. but managing to get into the office three days a week and work from home for 2 days.  Despite the progress (which I hope is upwards and not 1 step forward, 2 back), I do get fatigued a lot and can't do a huge amount in a day - and there are long periods when there's nothing to do that I can do, even watching Netflix, so dealing with boredom and frustration is one of the challenges and can make me wonder what is the purpose for going on.  I try to ride these feelings and remember that there have been better times, so there can be again.

 

I told a friend the other day that I'd felt angry about this situation - the harm caused by ignorant health professionals and the lack of true information about what psych drugs could do and that my life had been turned over radically.  Her answer to me was to "let it go".  I do wish people wouldn't say things like this.  However well-intentioned it is, it's a negation of my feelings about how my life is and how limited it is through medical damage.  It's not as though I walk around like a bear with a sore head for weeks on end - most of the time I'm getting on with it the best I can - but just sometimes I am hit by how much this has catapulted me into a different world (not one that I wanted) and it's natural that I feel angry.  I did rebut (kindly) and say that it's only to be expected that having my life upturned is going to produce anger at times.   In the end, I've put it down to her not being able to deal with anger in herself.  Tamp it down.  So I don't fixate on my irritation with her and can continue a friendship as she does have a heart of gold.  We cannot be zen-like at all times - and even long-time zen practitioners still deal with anger!

 

Apart from that, I'm trying a 0.25mg reduction in the escitalopram (lexapro) this week to see how that goes.

 

Hope you're hanging in there and having some relief on some days.

 

Neroli

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neroli

nz11 - good thinking - I hadn't thought about doing that.  I still haven't had a reply from them about my drug injury.

46 minutes ago, nz11 said:

 

I sent a copy to CARM.

 

 

 

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nz11

Hi Neroli 

Not sure if you have considered the Scottish govt. submission.

Anyway details are in my drug sig.

Maybe you already have submitted something. Ignore this if you have.

nz11

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neroli

nz11 - yes, done the Scottish submission.  posted it somewhere on this site as well - possibly in my introduction?  dunno, I get lost still - can't even find the NZ thread.

 

You'd asked if anyone knew how to set up a NZ petition - no, I don't and it would take a lot of time and energy which I wouldn't have at the moment.

 

However, I'm looking out for the Govt. review of Mental Health services to see where I could make a submission - I haven't read this properly yet but the latest link I could find is:  http://www.dia.govt.nz/Government-Inquiry-into-Mental-Health-and-Addiction

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nz11

Well done Neroli.

Thanks for doing the submission.

Youre the best!

I think a school of fish have just hit the leader board. lol Its looking awesome.

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neroli

as the hair shampoo ad. used to say...it won't happen overnight.  but I sure hope some of this stuff happening now contributes to significant awareness and correction of treatment - for us now and for future generations.  I like your Healy quote: "SSRI...the most shameful in the history of medicine"

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nz11

Yes you are right.

Yes Healy is fantastic. It pains me that he still prescribes this stuff though. Unlike Breggin and Brogan.

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Rosetta
1 hour ago, neroli said:

Hello Rosetta

 

Good to hear from you.  Hope you are doing ok.

 

So I don't fixate on my irritation with her and can continue a friendship as she does have a heart of gold.  We cannot be zen-like at all times - and even long-time zen practitioners still deal with anger!

 

I am doing ok.  Things have leveled out, and if I am careful to avoid stress I think I can avoid the wild mood swings for the most part.  A lot of stress came from my job.  So, it's really a blessing in disguise that I had to quit.  I think I can be content with a much more quiet life now that I have seen that ADs aren't the answer.

 

I am very glad to hear that you are able to look past your friend's comment.  It's good to know that she meant it as a helpful one rather than otherwise.  It does feel invalidating, I know, but we need to keep friends with hearts of gold!  I'm also happy that the holding helped you and you have had an evening out.  Wonderful!

 

The anger comes up for me, too.  I'm angry with myself and for being naive, but I'm also angry with the forces that brought everyone to this point.  Then I think, "Well, that's like being angry at a storm isn't it?"  Or being angry with the scorpion for stinging the fox who gave him a ride across a river.  Being angry with myself is similar.  I was young and in a lot of emotional pain, and I trusted a doctor.  I really need to be kind to my younger self and my current self.  At least this condition isn't permanent!  But I do wish I could get more control over my current situation to push through and make my life better in the present.  Patience.  The limitations aren't permanent either.

 

Good luck with your taper, Neroli. That is something you will be glad you did as staying on for life doesn't work out.  It didn't for me at least, and I notice that many people experience tachyphylaxis.  I assume that is inevitable for everyone.  I understand about the lack of energy, but I'm happy you are able to keep your job.   You will have control now about when and whether to,make drops and can stay sane.  Tachyphylaxis has its own timetable and doesn't allow that control.  

 

I'm sorry you are unable to watch Netflix sometimes.  That will pass, too.  Don't worry.  You'll get all your faculties back.

 

I hope you sleep well, 

Rosetta

 

 

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neroli
2 hours ago, nz11 said:

 

Yes Healy is fantastic. It pains me that he still prescribes this stuff though. Unlike Breggin and Brogan.

He is fantastic.  And yes, It's a bit of a paradox that he stills prescribes the stuff.  Still, his statement shows that he knows the risks of SSRIs - as does his website RxISK.org.  It's quite a step for a psychiatrist to be putting himself out there and talking about the risks and the suicide/homicide issue - even giving testimony at trials.    I haven't ultimately made up my mind about them - I know for me they were possibly unnecessary (I didn't have a major depression) and have now caused me great harm.  But I keep hearing people say "oh, they saved my life" - so on the fence I sit, leaning slightly to the down side.

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neroli
3 hours ago, Rosetta said:

tachyphylaxis

Hello Rosetta

 

I had to look up what tachyphylaxis means - but yes, that is one of my concerns and if that happens I'm in deep s**t.  My psychiatrist wouldn't even recognise it as a real happening - he said some people say that there is something called poop out with the drugs but he didn't believe it (words to that effect).

 

Patience is, indeed, what is needed in bucketfuls.  I'm glad to hear that you have levelled out a bit, it does help to get a bit of a window.

 

Ah, you understand the anger thing totally - and yes, it's kind of like shouting into a howling wind to get angry (I'd probably be the same if I lost a limb due to an accident - angry at the "universe") but it's human and as one of my other friends said, she'd rather know I was angry than apathetic because apathy is like a red light to her.  I have to keep going and keep earning what I can.  So onwards....

 

I've been out to my book club and popped in to see my friend for a cup of tea...it's now 6.00pm and I'm zonked.  I will be eating soon and then going to bed - ready to face a day in the office.

 

Oh, Netflix - I was pestered and pestered by a really good friend at work to do the 30 day free trial and I kept saying to him it's no use, I can't engage with anything.  But just before xmas I did it and got the free trial because I knew there was going to be time to fill.  And I've done ok with it - found some stuff that I can have an interest in, so now I'm a paying customer.  It's just those really blank times in my motivation that get me ....

 

The best to you as you progress inch by inch...the very best

 

Neroli

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Rosetta

I don't think you need to worry about tachyphylaxis.  It seems to take years to get there.  I was hoping to point out that you will never need to worry about that and you will have control from here on out.  

 

Ha, ha, I just wrote a rant on your thread about doctors and drug research.  So, I deleted it.  The last thing you need right now is negativity.  But, yes, there is such a thing as tachyphylaxis!!!  

 

I hope you have a good day at work, Neroli!

 

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neroli

Thanks, Rosetta, that is some comfort.  And I would probably have been ok with the rant - I rant to a friend who  has had similar experiences and knows what I'm talking about - sometimes I just have to.

 

I've seen enough Whitaker, Healy etc YouTubes to realise that the Drs and Psychs have no real scientific basis for prescribing as they do - we are the guinea pigs - and when it goes wrong they hold up their hands and say "no, it couldn't possibly be that"........grrrrrrrr

 

I had a pretty good day at work - felt crap but it's good to be around people and get to talk to my main support buddy.  

 

Best wishes

 

Neroli

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Rosetta

I'm glad you have support and someone who understands.  That's very nice.  My day turned out ok once the anxiety wore off. - R

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neroli

I tried a reduction of Escitalopram this week, planning to micro-taper over the week from 10 mg to 9.75mg.  Four days in and about 0.17mg down, I started to feel depressed and more anxious.  So updosed back to 10mg - I can't afford to be depressed and apathetic - I have to work.

 

Can that small decrease have caused this increase in symptoms?  This is most distressing if it means that it could be what happens even if I don't decrease.

 

Anyway, I'm going to stay on my current doses for a while, see if things even out and I get more stable.

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neroli

My submission to the Scottish petition is going to be published.  May more of this type of action happen, so that more and more notice is taken of the suffering of people today and results in better protection for future generations

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nz11
1 hour ago, neroli said:

My submission to the Scottish petition is going to be published.  May more of this type of action happen, so that more and more notice is taken of the suffering of people today and results in better protection for future generations

:)

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neroli
22 hours ago, neroli said:

I tried a reduction of Escitalopram this week, planning to micro-taper over the week from 10 mg to 9.75mg.  Four days in and about 0.17mg down, I started to feel depressed and more anxious.  So updosed back to 10mg - I can't afford to be depressed and apathetic - I have to work.

 

Can that small decrease have caused this increase in symptoms?  This is most distressing if it means that it could be what happens even if I don't decrease.

 

Anyway, I'm going to stay on my current doses for a while, see if things even out and I get more stable.

Just seeing anyone has any experience if such a small reduction causing these effects.

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neroli
9 hours ago, nz11 said:

:)

Thanks nz11.  I do hope we can get ears to listen.

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Rosetta

Hi, Neroli, I'm sorry your reduction didn't work out.  Maybe it's just not the right time.  You can try again later. -- Rosetta

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neroli
On 2/8/2018 at 10:10 PM, nz11 said:

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018.

 

Please do write to the Scottish Petition if you can - the more there are the more weight it adds to the real (awful) situation.

 

nz11's given us the info. to do it:

 

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos. 

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

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neroli
11 hours ago, Rosetta said:

Hi, Neroli, I'm sorry your reduction didn't work out.  Maybe it's just not the right time.  You can try again later. -- Rosetta

Hi Rosetta

 

Thanks, I'm gutted that it didn't work out and that I've spent the past 5 days with increased fatigue, anxiety and shakiness and falling in to the ditch of very low feelings again.  I'm especially p***ed off because it was citalopram that started all this mess of the past 6 years because it made me so fatigued and weak.  And escitalopram is the cousin of citalopram and I wonder if it's doing the same thing to me.  I have some really tired periods when I can not keep my eyes open however much I try and I doze off, either on the train, or on the settee, and get such awful half-awake thoughts going through my mind.  Then, when at last I can get myself moving, it's like a bus hit me.

 

Anyway, as I said, I'm going to stay on the doses I'm on for a few weeks or a month, just to find out how my body is on a consistent dose, then I can compare when I'm tapering again and be more sure if it's the taper that's causing the effects, or it's just going to be like that for me whether I taper or not.  I know it's no good wishing to go back in time - but IF ONLY I'd known about all this withdrawal stuff when I went to the Dr about the fatigue and weakness I was feeling (and I wish SHE'D known too) and could have done a slow taper off the bloody drug way back then.  Instead of being cycled through a series of other bloody drugs and brought to my knees with them.  6 years of having my life significantly affected and the last two/three/four being majorly limited/damaged..  

 

I've been reading more of your posts and can understand the pressure of having to think of more than two things at once - or even having to think about a decision to make, or fixing something that's broken down.  If life doesn't run like clockwork (as it doesn't for anybody) and I have an extra thing to think about, I get uptight and it takes a lot of thinking about.  My way of getting round this is to write the things down and choose one that needs doing and forcing myself to do it.  Then at least one thing is off the list.

 

It's the same with the house and garden  - it's not in the shape I would prefer it to be in.  It's not shabby but there are things like cleaning the shower, vacuuming, changing bed clothes, weeding and trimming etc. - they get when I've got the energy to do them and I do only one of the jobs in a week - so things get left for may weeks.  If I go overboard and do two, I'm exhausted and pay for it in the fatigue/low moods.

 

In fact last night I got home from work and knew I was tired but had to trim some shrubs because it was time to dead-head them and it'd been on my mind for weeks.  So I did it and it was exhausting but at least that was ticked off the list.  Result: fatigue, wobbly legs and low mood.  I was lucky that someone took me for a drive to a fair this morning - it was an effort to walk round the stalls but it meant that I was out of the house with less time to sit and wonder what the heck I could do with myself.

 

Your situation must be challenging to handle, with a family to care for/about and seeing those projects you want to get done and can't get round to it.  It really is hard with the effects of the long-term symptoms dragging on.  I hope you will see more and more windows.

 

Wishing all of us well.

 

Neroli

 

 

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neroli

Copy of part of the Background information on the Scottish Parliament site at : http://www.parliament.scot/gettinginvolved/petitions/PE01600-PE01699/PE01651_BackgroundInfo.aspx - SO TRUE:

 

Recovery and Renewal has found that GPs are the main prescribers and they, and specialists such as neurologists, gastroenterologists, cardiologists, psychiatrists and so on to whom patients are referred, are acting defensively - apparently constrained by unresponsive and blinkered healthcare systems in which they operate.  What is happening currently is the antithesis of responsive constructive systemic feedback and ‘learning from error/evidence’ of actual patient experience.

Patients are repeatedly told to go back to their GPs and local health boards if they experience problems and are dissatisfied. Individual personal experiences show how far this has got them: if patients cannot get any acknowledgement from their GP that (for example) prescribed benzodiazepine and/or antidepressant dependence or withdrawal is the cause of their wide-ranging, debilitating and confusing symptoms, how can affected individuals hope to get any appropriate advice, care, tests or necessary treatment? It has become abundantly clear that currently patients are consequently suffering very serious harm, disability or even death/suicide. 

Affected patients are finding themselves with apparently vague diagnoses (perhaps only discovered if they ask for their medical notes) such as ‘medically unexplained symptoms’ or ‘functional/somatic system disorders’.  These are essentially psychiatric diagnoses attributing various debilitating and disabling symptoms to patients’ own anxiety, beliefs, etc.:  http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx.

This has the effect of discounting, disempowering and demoralising these unfortunately affected patients still further.  If it cannot be acknowledged that patients can have sustained functional nervous system dysfunction and damage as a consequence of taking medicines ‘as prescribed’ (and sometimes over many years), systemic medical learning and improvement is stifled and patients continue to be further harmed.  Meanwhile the initial prescribing risks remain severely underestimated and misleading prescribing guidelines and ‘best practice’ advice persists unchanged.

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Rosetta

Thanks for your kind thoughts, Neroli.  I'm holding on right now.  I waiver between being distressed that everything's a wreck to being content with it "for now."  It really depends on what my brain is doing.  While in a wave I'm like a 4 year old -- no control whatsoever over my emotions -- until about 1:00 to 2:00 in the afternoon.  I do have a maid once a week, but if I'm in a wave her appearance sends me into a panic and brings on a crying spell.  She must think I'm insane.

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neroli

Oh, Rosetta, such a distressing situation to deal with.  You have my thoughts with you for recovery - it's horrible.  Good on you for hanging in there.

 

I've done two walks and just cleaned the shower today - I think it will be a super early night for me tonight to try to get as much rest as possible so I can make it into work tomorrow.  At least that's the shower ticked off for a few months!  This is too much information but the bit behind the soap holder was kinda mouldy - oh dear.

 

All best wishes

 

Neroli

 

 

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