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rickoshea Hi ... and help please


rickoshea

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It is the antibiotics, rick, many people have reported dramatic increase in uncomfortable symptoms while taking them.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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thanks Alto ... I think that'll do me with the antibiotics. Hopefully that'll give me some improvement.

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • 4 months later...

Hi again everyone - I haven't been posting much as I've been desperately trying to reach some state of stability following my reinstatement to 10mg Citalopram in March this year. Unfortunately the roller coaster continues but I would like some input from you all if possible. Following my "brick wall" failure at tapering from 10mg to 5mg when I did reinstate it was a horrendous experience. I did however take the advice kindly given to me here and have stayed on a stable dose of 10mg liquid Citalopram until now. The process has been at times nearly unbearable, some things have improved and some remain difficult. My main problem with reinstatement was the feeling of being severely "over stimulated" with associated symptoms (headaches, vision problems, GI problems, anxiety and feeling very stressed). Much of this continues though it's less severe (but still not easy to manage)

 

I have been thinking that perhaps my reinstatement was at too high a level? My GP did suggest at one stage (in July of this year) that I try an increase of my dose to try and get at least some form of stability. I tried this ... increasing to about 13/14mg and 3 days later was taken to A+E (the ER) with uncontrollable shakes, muscle twitches, chest pain and weakness. So my GP (who is very good) thinks that the raise in serotonin levels pushed me into a mild serotonin syndrome. Bearing this in mind could my present state be actually due to the fact that 10mg Citalopram is maybe too high a dose to stabilise on now? I still feel much "too alert", anxious, weak, nauseous, GI pain etc etc. I'm very (very!) wary of reducing again (scared actually) but to be honest I'm finding it very hard to continue like this.

 

Any advice and thoughts on my options would be great. Also - we can only get 1ml syringes here, does anyone know where I can get 0.5ml syringes? I've searched everywhere on the net, the local pharmacies can't get them either. The liquid Citalopram here is 40mg/ml which makes it difficult to taper small amounts to say the least using a 1ml syringe.

 

Thanks everyone and take care :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • Administrator

It's very possible your current dosage of 10mg citalopram is too much for you.

 

You might be able to get a smaller oral syringe from a veterinarian.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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many thanks for the reply Alto. Should I maybe then try a small 5-10% reduction and give that 4 days or so to see how it turns out? I forgot to mention my GP ran some bloods and found I was very D3 deficient so I took 100,000U of that once a month for 2 months - the second time with some rotten side effects so I'm finished with those now.

 

Great about trying the vets - I'll call there at the weekend thanks.

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • Administrator

100,000IU vitamin D once a month! What a bizarre idea. No wonder you had a bad reaction. That must have been very hard on your liver.

 

How about 5000IU per day?

 

If I were you, I'd try a small reduction, give it a week, and see if it helps. If symptoms are reduced, you're going in the right direction.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I know Alto - the second time it completely wiped me out for a couple of weeks, extreme fatigue, muscle pain, bone pain, headaches, anxiety, weakness etc etc ... horrendous. I've tried D3 at 1600/day but even that brought back symptoms similar to withdrawal (or side effects maybe). Now I don't take it but I'm getting pains everywhere again. My level had gone up to 30ng/ml but may now have dropped again (the pains did go away at least with the supplementation). It's a bit of a disaster not knowing what's causing these symptoms - Vit D, CFS, withdrawal, side effects? .... whatever it is I'm not doing too well at the minute.

 

I've reduced 0.5mg of the Seropram ... 5%, so I'll give that a week as you advise and see how things turn out.

 

Thanks again :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • Administrator

You might try even less D3 -- perhaps 400IU. Or, if you're sensitized, let it rest a bit and then try a small amount.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I'll try that Alto ... the pills I have are 800 so I'll half them. I'm getting bloods done today to check my D3 level. I believe that low Vit D can cause some similar symptoms to withdrawal so it'll be interesting to see what the result is now.

 

I didn't have a good day yesterday - feeling very "slow and detached" but less activated. I don't know if the very slight reduction I did could affect me after 2 days or whether this is due to stress (I've had a lot the past few weeks) but I'll sit with the reduced dose for a week as you say and see how things turn out.

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • Administrator

I'm going to guess that getting some sun is difficult where you are!

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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so very true Alto! ... plus, with my job, I'm never outside, I'm surprised I have any level of Vit D at all!

 

So my level now is 29ng/ml - close enough to normal to maybe discount any symptoms coming from a deficiency.

 

My slight dose lowering coincided with a very stressful time so, as always, I don't know which caused my exacerbation in symptoms. I've had bad anxiety/dizzyness/dp/dr/shakes for the past week associated with a feeling of being very overactivated and complete stress intolerance. This seems to be calming a bit now.

 

I've been thinking about the past year or two and would appreciate any thoughts. About 18 months to 2 years ago I started having periods of severe anxiety (seemed to be like clockwork once a month) and complete loss of interest in doing anything. This continued then I had what I can only assume was a bad reaction to a generic brand of Citalopram. I got very anxious with some other symptoms and realised that the generic was simply ineffective so switched to liquid Citalopram. Now this is 40mg/ml and the info leaflet stated 0.2mls was equivalent to 10mg so I used that (but stupidly used the last bit in the nozzle of the syringe). So I assume I was taking about 12mg. I remember feeling very activated with almost manic episodes but this seemed to settle a bit. The periods of anxiety didn't though ... and they were severe for a week or so a month. 

 

I'm actually wondering if I was going through tolerance withdrawal after about 12 years on the drug? I certainly had changed a lot mentally even before the generic episode and I remember having a lot of what I can see now as side effects starting before that too.

 

Do you think that my reaction reinstating to the full dose (12mg odd) could have been because now they may be doing me more harm than good? I still get some symptoms of either withdrawal or side effects .... very blurred vision, intolerance of stress, rhinitis, tinnitus, sinusitis, weakness, abdominal problems etc etc and an almost constant underlying anxiety. Of course like a lot of us, I never had this before the medication.

 

One other thing. Being a bit of an inquisitive fella I'm in the fortunate position where I can write my own scripts for bloods etc. At the start of my reinstatement I did some (my GP found the high cortisol) and I found a raised CPK. Now this is an enzyme whose level raises (in my case) due to muscle loss (it is still raised in my last test a week ago though slightly lower). I have lost muscle bulk and tone no doubt since reinstating. Apparently CPK can raise if there is an adverse reaction to an SSRI. This plus my dose increase landing me in the ER makes me think that I have maybe been in tolerance withdrawal for a couple of years and now Citalopram is simply having an adverse effect. I felt better initally reducing last October then reduced too fast leading to withdrawal symptoms. Does this seem reasonably logical? If so things will improve as I taper (as long as I do it slowly enough?)

 

Last question (!) .... I won't be able to taper using a 40mg/ml solution and a 1ml syringe (no 0.5ml ones at the vets unfortunately) so I'm going to make a solution as per Rhi's instructions (which are great thanks Rhi) of 1mg/ml. I'll need to start on the same dose as my liquid - so the last bit on the nozzle will be about a drop - about 2mg? .... which would mean I'll start on a solution of 12ml.

 

My plan is 10% (of previous dose) every 6 weeks and raising 5% if I get w/d effects and holding. Do you hold until all symptoms subside ... even if that means more than 6 weeks? In other words do you have to be completely stable before the next reduction as is it not difficult to say when stability occurs due to the wave and window pattern?

 

Sorry for all the questions but this time I want to do it right and hopefully minimise impact on my day to day life.

 

Thanks again :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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My plan is 10% (of previous dose) every 6 weeks and raising 5% if I get w/d effects and holding. Do you hold until all symptoms subside ... even if that means more than 6 weeks? In other words do you have to be completely stable before the next reduction as is it not difficult to say when stability occurs due to the wave and window pattern?

 

Sorry for all the questions but this time I want to do it right and hopefully minimise impact on my day to day life.

 

Thanks again :)

Hi Rickoshea,

 

I can give you my opinion on your last question above: the key to successful tapering is listening to your body and not following some pre-arranged timeframe. Time frames are just broad orientation marks. The body speaks through symptoms so yes, it is definitely advisable to wait till your symptoms subside to a very minimal level. It's not always a complete stability but you should have let's say a week of very low symptoms before making another cut. Also some people find it that 10 % is too much of a cut and go with smaller cuts. 

This is advisable if your withdrawal symptoms upon cut are very strong. I avoid updosing and changes in general. If I made a too big cut I ride it out and next time make a smaller cut and/or hold longer. 

Current: 9/2022 Xanax 0.08, Lexapro 2

2020 Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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Hi Bubble ... and many thanks for the reply and the advice. It's tricky for me separating the w/d from the CFS as symptoms are so similar but your advice is great. I may try 5% cuts to be honest, I'm in no hurry and want to try to keep a semi decent quality of life going while I do this. Plus, I have a lot of stress coming up (moving country, new practice etc etc) so big cuts will not be the best of ideas!

 

Just looking at your signature and I saw you renistated 5mg of Escitalopram after your crash. I do think this is where I went wrong with too high a reinstatement after mine (straight back up to pre taper dose) but I'm so nervous of making cuts now even though I feel shall we say "somewhat unstable" .... which means pretty crap most of the time.

 

Thanks again :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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ME/CFS and the NHS do not mix, I feel for you. ME/CFS is a waste-basket disorder that doctors use to lump people for whom they don't know the problem. There is likely to be many causes and many different presentations. Derangement of the HPA axis and ANS hyperactivity is just one facet. Remember how the clonidine trial failed? I fell ill with ME/CFS after an acute viral illness but that was just the straw that broke the camels back. Gut dysbiosis and enteroviruses are taking front stage, at least from my vantage point

 

Circadian rhythm can be flipped easily and how you feel at different points in the day is not always a reliable method of high or low cortisol levels. There are many supplements that lower cortisol and none of them have caught on in the ME/CFS community, based on the time I spend on one forum. Most feel worse on them (you don't have to take my word for it).

 

Fish oil lowers cortisol but many here seem to find it helpful. SSRIs increase cortisol, and improve symptoms of CFS in many. Although cortisol also follows a diurnal rhythm, and should be lower and night and highest during the morning hours, too low cortisol at night can also disrupt sleep.

 

Acute SSRI use increase excitatory neurotransmission, while chronic SSRI use decreases excitatory neurotransmission (much like chronic benzodiazepine usage), and supplements that decease glutamate (an excitatory neurotransmitter) have seen more success in the ME/CFS community I follow. One prominent CFS doctor prescribes benzodiazepines for his patients (A practice I strongly disagree with, despite the relief of many of his patients), and many of their neurological and physical symptoms subside. Of course tolerance will set in eventually.

 

It sounds like your nervous system is on high alert, to say the least. Sometimes high cortisol can be a coping mechanism for something else. I disagree with many who say that it's the "bad" hormone. Cortisol helps you deal with stress, both psychical and emotional (although the two are interconnected) and is essential to healing and reducing inflammation.

 

I don't really know where I'm going with this, and these similarities have been noted MANY times before, but take a look at your symptoms and those most common in benzo withdrawal. Oddly, benzos reduce cortisol (while SSRIs increase them).

 

I guess I just felt like writing a lot or showing off or something shallow like that, very like me, but I think it's hard to draw too many conclusions about cortisol and withdrawal.

 

PEM feels very much like acute SSRI withdrawal. I'm always in and out of PEM, since I don't take care of my body as I should. Pacing has worked best for me, but I am impatient and friends aren't always understanding, and think I'm lazy.

April / 2016: Cipralex 10 mg, Mirtazapine 30 mg, Lyrica 600 mg, Diazepam 20 mg, Bystolic 5 mg

2018: Lots of polypharmacy which is undocumented here. Started and stopped several drugs and changed doses of existing ones

August / 2018: Back on track! Cipralex 15 mg, Mirtazapine 7.5 mg, Diazepam 15 mg

September 2018: Cipralex 15 mg -> 12.5 mg

October 2018: Cipralex 12.5 mg -> 10 mg, Mirtazapine 7.5 mg -> 3.75 mg -> Stopped, Diazepam 15 mg

November 2019: Cipralex 5 mg, Diazepam 10 mg

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I feel bad nnow since I'm not sure I added anything helpful for you. Definitely look up pacing as a way to avoid PEM, if you haven't already. I've learned to feel when I'm going to pass my threshold for activity and the longer I stay past it the worse and longer the PEM is. It definitely interferes with becoming stable, at least in my case. It's like a vicious cycle.

April / 2016: Cipralex 10 mg, Mirtazapine 30 mg, Lyrica 600 mg, Diazepam 20 mg, Bystolic 5 mg

2018: Lots of polypharmacy which is undocumented here. Started and stopped several drugs and changed doses of existing ones

August / 2018: Back on track! Cipralex 15 mg, Mirtazapine 7.5 mg, Diazepam 15 mg

September 2018: Cipralex 15 mg -> 12.5 mg

October 2018: Cipralex 12.5 mg -> 10 mg, Mirtazapine 7.5 mg -> 3.75 mg -> Stopped, Diazepam 15 mg

November 2019: Cipralex 5 mg, Diazepam 10 mg

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yup ... it's a miserable illness CFS. You definitely have added helpful stuff, not least as now I know I have a fellow CFS sufferer trying to come off SSRI's. I agree completely with the gut dysbiosis/enterovirus thing. I feel miserable when I have anything intestinal going on - the CFS symptoms are massively exacerbated and this was before my run in with trying to come off an SSRI. I know for sure that a benzodiazepine would help me at the minute but I refuse to go down that road.

 

My PEM symptoms are generally mental with the usual physical stuff thrown into the mix (I tend to overdo things mentally rather than physically) ... as you say, all very very similar to w/d symptoms. There is a definite dysregulation in the HPA/ANS, I think any of us who have CFS have recognisable symptoms of that. My situation is strange, sometimes I can walk miles with no problem, others I get the dizzy weak stuff going on after 100yds and I'm not the most patient of people either, plus my job is stressful and I haven't ever taken time off. Stupid eh?!

 

Funnily enough I was seeing a consultant endocrinologist yesterday after my high cortisol run in (they did 3 day bloods for that and a load of others). I have a slightly raised rheumatoid factor but as he said not specific, or high, enough to be rheumatoid arthritis. This is seen in chronic viral infections - usually Epstein Barr or Parvovirus apparently - 2 (of many) implicated in CFS/ME. He's doing more bloods (if I have any left!). The NHS and CFS definitely don't mix - luckily at the minute I'm in France where the care is exceptional.

 

Keep in touch .... fire me an PM anytime and cheers for the post :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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  • 6 months later...

Hi again everyone .... I thought I'd pop back to let you know how things have been going and for some (more) advice.

 

I have stayed at my "normal" dose of Citalopram now since reinstating in February/March last year. This has been a tricky one as I was taking liquid (40mg/ml) Seropram at 0.2mls which should give an equivalent dose to a 10mg tab. I have read (and been told by the pharmacist) that a more accurate dosing is by taking 4 drops of the 40mg/ml - I was probably getting about 5/6 drops from the syringe. Simply following instructions on the leaflet to take 0.2mls from the 1ml syringe included may have been giving me a dose of maybe 12/13mg?. I posted before about my doctor trying an increase above this which lead to an ER visit with extreme weakness, shaking, muscle jerks etc which she decided was a mild serotonin syndrome. Since then I've religiously taken the 0.2mls and got to "near" stability. Some anxiety and occasional panic attacks remained but I could function to a degree. I still felt constantly on edge.

 

Recently I started a new bottle of the Seropram liquid. Within a few days I had that dreadful feeling of being "too alert" .... wired but tired seems to be a good description. Waking up again at almost exactly 4.20am (very strange) and feeling extremely on edge, stressed and anxious. No depression at all but some depersonalisation. Then I got chest pains, muscle aches, tinnitus - the list goes on.

 

I can only assume the latest bottle of Citalopram (same non generic as before) is in some way either too concentrated or too weak. So I decided to use Rhi's method and make liquid Citalopram so I can be more accurate in my dosing for one thing and I had a feeling that the liquid just didn't agree with me as since I started using it I've had a myriad of side effects (this may be due to me taking too high a dose compared to my usual 10mg tablet)

 

So I made a 40mg/40ml solution and started that at 12mg on the 27th of May. 2 days later I started having major "adrenalin surges" , feeling much too alert and basically dreadful. This was getting to the stage where I was at after the last disasterous dose increase so I started on 10.5mg 3 days ago. My problem is that these symptoms are very much persisting. I still feel very much "too awake", anxious, panicky and on edge. I'm also getting huge hot flushes and feel hot then shivery at times.

 

I'm looking for some advice on this if possible. I have a feeling that even 10mg is now too much for me but am very very wary (scared) to reduce my dose after my last disaster. To be honest, even if I've felt I may have stabilised I haven't really, I've still been on a rollercoaster. So could it be possible that many of my symptoms are actually coming from too much Citalopram now?

 

I'd really appreciate some advice and some of your experiences with this. Basically I really don't know what to do any more.

 

Sorry for the long post and thanks for any replies :)

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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anyone got any ideas? .... could I start to reduce my dose while still feeling so bad, or try a trial reduction?

12 years on 10mg Citalopram primarily for CFS/IBS

October 2013 - started taper and tapered too fast leading to reinstatement in December 2013

late December/early January 2014 tapered from 10mg to 6.4mg - crashed again 3 weeks later after doing well.

reinstatement to 10mg Citalopram on 28th February 2014

October 2014 ... holding on 10mg Citalopram but instability remains

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