Grace47: From recovery to discovery My experience of long term SSRI use & withdrawal

[Grace47]

 

 

I’ve been trying to write this since late summer 2021 when I came off citalopram, and joined the Facebook withdrawal support group in case of recurrence issues etc.

I would welcome any feedback and ideas.

 

 

I knew very little about withdrawal compared to what I’ve now learned, and experienced, and I thought all my problems from prolonged use were virtually over!

So it’s for the best I wasn't able to finish writing this due to the increased executive dysfunction and additional issues cropping up, as my recovery journey had only really begun.

 

 

I’m still learning, awaiting and hopeful for full recovery.

I went on citalopram in 2007 age 33, (10 mg and very gradually increased dose) and made as much informed choice as was available at the time.

There was no intention of it being long term.

 

 

For some time during these early years I went up to 60mg until a doctor told me they needed to reduce people to no more than 40mg due to some research about heart issues.

This reduction seemed no problem.

 

 

Circumstances had caused me to become additionally anxious, depressed and even suicidal before going on citalopram, (intolerable neighbour noise and abuse).

I still suffer the effects of these traumatic times from 2002, and becoming extreme by 2006 whenever there is a trigger or threat of recurrence.

Mirtazapine was recommended at this time, and a doctor said 'I know you shouldn't have to take pills because of someone else, but they will help you through a house move.'

Reluctantly I decided to try them as things were desperate.

I tried a couple of doses, missing a day as they made me feel drowsy, zombie like.

I had little concept of how they work.

We had a call that day with the offer of another flat, therefore I did not continue with the Mirtazapine, relived the problem may be over.

Although we moved from the extreme issues in 2006, the next place, though an improvement initially, was not conducive for recovery; being a mid-flat and there was a turnover of problematic people in the above and below flats.

Many aspects of my mental health did not improve, also my disabilities, were affected.

 

 

After starting citalopram I started to feel better within first few days, a few side effects and feeling unwell during the 2nd to 3rd day, which passed, but also everything started feeling smoother, cushioned, and then I felt much better by 4th day . 

 

 

This was a surprisingly good, quick and dramatic response; I had been advised it may take weeks and often people need to try two or three different types before finding one that suits.

I have hidden disabilities, autism, ADHD, DCD (i.e., developmental co-ordination disorder, dyspraxia).

 

 

One of the things I’d been struggling with was increased problems with co-ordination/proprioception, frequently crashing/stubbing fingers into things; this ceased.

My eating, which had become really slow, improved, along with digestion.

 

 

I soon slept better at night and became more happy and proactive in the day. My mind became more in the present, forgetting to think much about past and future.

Also I have trichotillomania - compulsive hair pulling.

 

 

This ceased soon after going on citalopram, but returned within weeks, which I thought was due to me dealing with more challenging issues too soon.

Some information about how these pills work, and effectiveness for trichotillomania had reached my specialist autism councillor, who had advised me in good faith.

 

 

However, it's now known that these meds are not usually effective for trichotillomania, and can aggravate it.

 

 

I now know why several approaches for trichotillomania during the years on citalopram were to no avail, even though they appeared promising initially. 

 

 

However, one of the referrals was particularly useful, i.e. SAANDS (Sheffield Autism and Neurodevelopmental service).

This led to a more meaningful report for my existing autism diagnosis along with a sensory profile, and a diagnosis of ADHD and DCD (Developmental Coordination Disorder, dyspraxia).

This gave me additional insights and validation into my sensory and developmental needs, and opened up opportunities. 

 

 

It was also reported that people with DCD become more tired than the norm, and also can get aches and pains.

This is also common for Autistic people.

In all my experience learning about and knowing others with these hidden disabilities many have fatigue type illnesses which include gut issues and unexplained symptoms which are neurological, and the nervous system is already imbalanced.

My understanding is this is often due to the exhausting stress of having to navigate a life we are not equipped to deal with, especially those who have been long-term without the support and understanding needed.

I’ve now made the connection many are on such medications.

I still did not believe I could come off citalopram, as I falsely believed they made me safer from the trichotillomania as they had initially.

I was also scared of the old issues I had before meds returning; i.e. destressing painful intrusive thoughts causing sleepless nights.

There never appeared to be a right time to come off them due to life stresses,

such as gaslighting and gatekeeping from organizations and individuals which kept the pattern going.

I believed that these unresolved issues were contributors to my worsening health in the latter years.

 

 

I became enabled to have a more fulfilling life during the first years, (due to circumstances and pills).

I was more resilient, my communication and social life developed.

However, things were not really ok because my living environment was still problematic, therefore coping with other life stresses was more difficult.

 

 

I became more enabled to figure out creative big ideas and find support to implement them.

My mum followed a similar pattern with initial alleviation of symptoms then eventual decline into fatigue, and severe physical symptoms during lengthy tapering and withdrawal.

 

 

The best years health wise were the first few, up to around 2012-13, which were the happiest years due to circumstances including another house move in 2012 to a more appropriate and peaceful flat.

 

 

There appeared to be a significant improvement in health problems during the first couple of months; i.e., virtually free of the post viral type issues explained below.

 

 

This issue stemmed from glandular fever in 1996, involving feeling of swelling from throat to stomach, (likely glands, and membranes) digestion problems, weight loss, fatigue.

Alternative therapies helped when this deteriorated in the noughties, though progress was limited hence the stressful circumstances.

I’ve now learnt that stress on the body from these meds can likely cause a recurrence or reactivation of illnesses like this.

 

 

In the summer of 2008 a few months after starting citalopram, I had a normal cold / cough, but the cough didn't fully clear up, I was left with frequent need to clear throat, and difficulty doing so.

 

 

Looking back in old diaries, I raised this with doctor in autumn 2010.

Therefore it must have become more intrusive then, as I doubt I put up with it at that level for two years.

 

 

This correlated with me resorting to trying the pill, cerazette, as I was suffering from severe pms and period issues which although I’ve always had this, it is worsened by stress, which life issues were causing at this time.

 

 

I found out recently the pill can cause gut imbalance, reflux and is pro inflammatory.

Luckily I only lasted 6-8 weeks on it as I had low level physical pms all the time (I remember feeling cold etc.).

 

 

I was prescribed a steroid spray for the cough, which luckily wasn't effective as they are not good for health and can create further issues.

Eventually after tests ruled other things out a doctor thought it was silent reflux.

 

 

I tried three different types of PPIs, from early 2011 to summer 2014; they didn't appear to do much. I think I must have stuck with them out of a false sense of security.

 

 

I gradually developed some bowel problems (wind, looseness) which I thought could be some level of lactose intolerance as when I started using more soya than cow's milk in spring 2012, symptoms improved.

(I’ve had some difficulties with cow's milk before; we now think it's more likely to be proteins that are difficult to digest when my digestion is not efficient).

 

 

The issues gradually crept back though.

Also I had occasional tummy bugs whilst on these PPIs which I never usually have (not since I was young).

 

 

In the summer of 2014 a doctor had the presence of mind to suggest I switch to gaviscon or equivalent because of risk of long term side effects of PPIs.

The bowel issues cleared up immediately, but my routine blood test sometime after this showed my calcium levels were low.

(Clearly absorption issues from the gaviscon)!

I discovered slippery elm powder (and now found marshmallow powder) suited rather than gaviscon, therefore no longer needing the aspartame containing calcium pills!

 

 

I’ve included this information as PPIs are often prescribed inappropriately, (as are many meds) e.g. it's becoming known often people with low stomach acid ( which I suspect I have/had, especially in the latter years of being on citalopram) present similar symptoms to high acid and imbalances caused by such meds can lead to long term issues (including osteoporosis).

 

 

During the summer of 2019, after reading about low stomach acid how to improve it, I took the advice of eating the protein of meals first as this makes digestion easier.

I had no unwell days for an unusually long time, around six weeks.

I was confident this was the solution, until the problems inevitably crept back, not having identified the main source.

 

 

This silent reflux was one reason I chose to try reduce citalopram, as I’d read it may cause such issues.

Going from 40mg to 30mg did not appear problematic.

 

 

The post viral type issues gradually crept back up.

In 2013 a routine blood test showed anaemia (iron deficiency).

I had hoped this was an explanation and solution to this fatigue, but treatment made no difference to my symptoms.

 

 

However, it's likely that this anaemia which recurred occasionally over the years was connected to these meds even if indirect, due to poor absorption and heavier periods.

By around 2014-15 I was having an unwell day every week or two.

 

 

I raised this with a doctor and after some tests a referral to the CFS/ME clinic was agreed.

The in G.P. there had a special interest in CFS/ME and was insightful, knowledgeable validated my experience. We discussed how some traits of CfS/ME and Autism are shared due to the CNS.

Also he felt the glandular fever, had changed my immune system. This appears imbalanced as I rarely pick up colds and other bugs.

 

 

We concluded and agreed on a provisional diagnosis of atypical chronic fatigue.

 

 

There was no pretence of knowing all the answers, unlike many. This felt right as my experience is being chronically fatigued, but I do not fit the usual pattern; nor benefit from the usual pacing approach.

 

 

However, I do need to pace anyway in order to function due to autism, but this makes no difference to the physical symptoms.

 

 

I went to a herbalist in around 2016, who I still see.

Although we couldn't improve "chronic fatigue" and symptoms at the time as we did not know the culprit, it balanced my hormones, gave me a regular cycle which I’d never had, and tests showed my oestrogen was no longer on the low side and my bone strength became normal for my age.

Although I’d previously had some hormonal improvement through alternatives, it was this time and the vitex that really clinched it.

 

 

The "chronic fatigue" became more frequent, and became almost half the days of the week from summer 2020, though during premenstrual half of month I was less likely to be affected.

This changed in autumn 2020, more days unwell than well regardless.

 

 

I very gradually tapered from 30mg to 20mg in winter 2020-21 even though at this point I didn't think the pills could be responsible for all these problems.

However, I wanted to try coming off them in case, as I’d come across stuff online about them depleting minerals and causing imbalance of gut flora etc. and also for other wellbeing reasons.

It is also now known these meds deplete neurons needed for mood regulation.

Any changes good or bad during this taper were too subtle too pinpoint.

( I had tried coming down from 30mg a few years ago, but couldn't make it work, appeared to make my DCD (dyspraxia) worse.)

 

 

In retrospect, it's likely I used the alternating days taper, hence causing problems, which I would not have known is often problematic.

However, the DCD had gradually become more problematic over last few years but because it was so slow and subtle I didn't know what was happening, as it mainly affected spatial awareness in situations like walking through town, so didn't know if I’d got worse - or was it the behaviour of the public?

(E.g. increase in people not being mindful of where they’re going, walking looking at phones etc.).

 

 

It became much more stressful exhausting work for the final almost year on meds, especially on unwell and precursor days; it was a relief when I shopped with my partner to guide me.

I also had loss of balance; again I can look back and see it started extremely subtly, 2018 I remember, but I put that down to DCD.

 

 

There would always be a precursor to an unwell day, including various symptoms, fleeting slight nausea, (which was also problematic on movement and lying down at times) almost constant wind, drop in mood and motivation, indecisiveness, increase in trichotillomania, loss of appetite/digestion, yawning, mispronouncing words, coldness, accidents/mishaps, and some feeling in sinus like beginnings of a cold.

This all worsened towards the end and a particularly distressing problem was accidently biting myself when eating (inside of mouth etc.).

 

 

In the summer of 2021 I researched this biting as it was happening most days and was becoming very distressing, though psychologically more than physically.

Among other reasons I read about, was swollen mucosa.

This correlated with the side effects list on my pill leaflet, (like many other issues) but had manifested differently.

This appears to be a common pattern of long-term use and withdrawal for many, though often much more chronic or severe.

 

 

These precursors were infallible, and were always followed by a feeling of swelling from neck/glands, behind nose/eyes down to stomach, and frequent hiccupping type motion.

This would inevitably set in for at least 24 hours, gradually increasing in the latter years.

 

 

Also, an ache in my thigh I've had on and off since the 1996 glandular fever or before became more severe.

 

 

In retrospect, this was much more than the post glandular fever, and also came with numerous additional issues.

 

 

Some inflammation appeared in my finger, in spring 2021 I believe; I felt a sharp pain after only squeezing a baby wipe.

Although nothing could be found, it was worrying and limiting.

I did not know it was related to the other issues until later, and now realise it correlated with the uneven taper.

I had all usual tests over that spring/summer, bloods, stool sample, upper endoscopy, CT scan though I was sure it would be to no avail, already having my answers as explained, and there is no viable treatment for such neurological issues.

It only served to reassure others and had no benefit for my well-being.

 

A possible abnormality of small bowel was suspected.

This gave me hope, maybe my symptoms could be explained and fixed.

I wondered if it was bowel toxins leaking as that seemed to fit with my problems; (i.e. like slow poisoning).

I had a pill camera test and was disappointed when it showed it was only benign polyps and still nothing explained or untoward found; therefore, no resolution.

I also returned to the CFS clinic.

It was a new psychiatrist; he did not think I had CFS, not even atypical and believed it was anxiety and IBS.

Although he’d been quite thorough, and looked through reports about how essential my activities are, and gave a good prognosis for me getting well when my activities resume after the lockdown, but he had put two-and-two together and made 500!

 

 

I did not feel adversely affected by lockdown.

I did not feel excluded, had plenty to do and a safe peaceful place to live, contrary to past lifelong experiences that led me to going on pills.

I’m happy living with my mum, and was also forming a close friendship, who has now become my partner.

We were a support bubble.

We were told quite early in the lockdown that our important activity (disability sports and play) would return in time and the staff would keep their jobs.

 

 

I learnt some new skills due to lockdown which are empowering, and also new walks to different shops.

Obviously the frequent fatigue was frustrating as I could have been doing so much more.

However I felt I had no choice but to take his advice on board, as it was also said among peers that the pandemic causes stress to us all even if we don't realise it, e.g., it's tiring having to think about everything we do etc.

I did not feel able to process or express that this diagnosis was not right for me, the exhaustion and illness made me feel helpless and resigned.

Additionally, I didn't have enough time to process his report.

Also, there wasn't enough allowance of my difficulties making informed choices due to Autism.

To be fair, this isn't always apparent to others.

However, I still find it disturbing how I was misdiagnosed and the more knowledgeable CFS/ME doctor was overridden.

 

 

In retrospect I may have appeared to present with anxieties, which had been documented.

Although this originated from past traumas, I now feel it was due to my deteriorating health and unexplained new symptoms, but focused onto past experiences.

Those anxieties have now diminished, though naturally I cannot help but wonder what could have become of me had I not discovered why, or stopped these meds which were clearly causing harm.

Maybe it was for the best that it was me rather than them who discovered the cause, as I dread to think of the effects of a rapid withdrawal that professionals commonly use!

An aspect that influenced his decision of me not having CFS is that I’d sometimes use alcohol on a bad day as I’d discovered it masked the symptoms a bit and gave me some energy and motivation, and most importantly stimulated appetite and digestion.

This gave me some concerns; i.e. using it for wrong reasons, as alcohol was normally for treats and occasions for me.

I was mindful about not having too much or too often.

I now have less alcohol as it sometimes doesn't suit me as well, also learnt from this group that its problematic for some in withdrawal.

 

 

He referred me to a mental health 'Living well with long-term conditions' course, and suggested I drink peppermint tea!

By the time this course started in August I’d discovered this med had made me ill, therefore I ended up enlightening them!

They were nice and open to learning.

The gastroenterologist who had liaised with the psychiatrist suggested I change my diet, basically to cut out many valuable prebiotic foods, therefore scapegoating the likes of broccoli and garlic whilst completely missing the real culprit!

It's concerning that not one of these medical professionals made this connection!

 

 

During summer 2021 I tapered from 20 mg to 10 mg, using the method of dropping down to 10 mg every few days, and gradually weening until 20mg every other day, and then other way round until I was on 10mg most days, then every day

(I didn't know then that this method is not usually recommended by real insightful sources like this group and can be problematic for many).

Its very common for practitioners use this method, and also withdraw people much too quickly.

This can make people very ill, though can be much delayed.

It is often believed a person cannot be free of meds due to this.

Of course every individual is different, but very slow even tapers over months or even years can make a safer smoother transition as it gives the nervous system time to adjust. This is known as micro tapering and is becoming more documented, and resources can be found on the 'Surviving Antidepressants' and 'The inner compass' site and the Facebook SSRI withdrawal group.

 

 

People often take this into their own hands because of this control. Correct and safe ways of tapering with appropriate resources is essential.

 

 

I felt ok and started to feel much better as soon as I was on 10mg every day, my digestion started working better.

Therefore I started to taper again after a week.

I intended to take it slow again; I had an appointment I needed to keep that week so didn't want to risk adverse effects.

I had no pill on the Tuesday of that week in late August, and had never felt better in ages.

I took one the following day; the old unwell feeling came back.

I took no more pills from Thursday 26th August.

From this day I felt really high and exited; I’d identified why I was ill and felt so much better.

I just wanted to party and celebrate!

I woke early in the mornings feeling exited and energetic; I felt like climbing on the roof and dancing to Meatloaf, but apart from there been no scaffolding up, I could never be that kind of neighbour so I quietly sewed some party clothes until getting up time.

 

 

My partner and I had booked a short break for mid-September, therefore virtually all my spare time and headspace was consumed by organizing my packing which due to the vast increase of my existing executive dysfunction became a very challenging battle even with the most meticulous lists of where each item is, meltdowns were caused by having no short term memory and things disappearing.

 

 

I realize now after learning about others adverse experiences in the first weeks of withdrawal how lucky we were that the holiday went ahead and I had just one very tired day during the stay.

However, had we not had this plan I would likely have used that time to write this story and post on the group, knowing very little of what I know now, I thought it would be an introductory post taking around 15 minutes, which I intended to do if there was any spare time on the holiday!

I realize now how premature that would have been!

 

 

The nausea, wind, appetite and digestion issues, hiccupping, losing balance cleared up quickly, also the night sweats that had gradually crept up over the years during the premenstrual two weeks.

I had put this down to my PCOS, and had not been able to find any solution.

 

 

There was a marked improvement in my finger on withdrawal, and clear changes; a feeling of bruising in my thumb appeared and was distinctive on precursor days, and a few months later both significantly improved.

Also I felt I gained some strength, though not enough stamina for physical activity I’d usually find fun. 

The quick withdrawal had the effect of making me hyper.

(I did not know then that coming off 10mg is classed as CT, I’d thought that was lowest available dose.)

 

 

I felt happy and excited about being able to eat better and digest foods I like, i.e., bread which I cannot digest when unwell just like after the glandular fever.

I remember feeling quite euphoric choosing crusty bread in Lidl!

I was actually hungry often, and I put some weight on in these few weeks; I had gone down to six and a quarter stone.

It was a transformative time, I felt like "The Very Hungry Caterpillar!"

I went up to six and a half stone in the first few weeks.

People noticed I looked well, my healthy colour restored, as I’d lost colour and had become gaunt looking with a pale grey/blueish skin tone. 

 

 

I have gone through mood swing phases like this in the past as part of my disabilities and reactive depression.

 

 

Withdrawal also came with easy triggers into meltdown, self-harm, lashing out at myself or objects etc. because of additional mishaps, i.e. short term memory difficulties and executive dysfunction which are part of my disabilities anyway became exacerbated, triggering my background of being bullied and punished for my disabilities, as I had no diagnosis until young adulthood.

The following two weeks I frequently felt lightheaded, just as if I’d had alcohol.

 

 

However some of DCD issues (balance and navigating shops etc.) which clearly had been aggravated by the pills, improved.

However when I did have small accidents due to DCD (knocking into things etc. which may not have been more than usual) it triggered reactions as above.

 

 

Even though I’ve spent the last twenty-two years, since my autism diagnosis seeking and attending disability activity sports/play and other disability and diversity groups, where people are kind, understanding and forward thinking, and I have gained lots of self-insight, it has become clear I’m still affected by the traumas before this in addition to other adverse experiences that led me to try meds.

 

 

Two to three weeks after stopping pills I had a gradual decline with the "chronic fatigue" days returning and becoming more frequent.

I couldn't understand it at first as I’d been so happy expecting the opposite, i.e. gradual improvement.

However, some of the symptoms listed earlier (particularly stomach and bowel issues) did not return and the precursor ones seemed less problematic initially but kept gradually changing over time.

The anxiety and sleeping issues with painful ruminating thoughts I had previous to going on pills have not returned, (I was scared of this returning, hence being reluctant to come of them at times) but situations that led to it have changed, (a safe peaceful place to live) which makes other issues easier to cope with.

The inflammation, which I’d previously described as a feeling of swelling/bloating felt more distinct, and appeared to change and sometimes lessen, but although still problematic, there's gradually less impact on digestion, and at times more sinus centred.

I felt disappointed at this gradual decline when I had expected a gradual improvement.

 

 

In January 2022 I tried a supermarket antihistamine, after hearing stuff about inflammation could be a histamine issue, I was hoping for occasional use for relief so I could enjoy any events.

Over a couple of weeks there was a bit of lifting of mood, and some headaches at the start and finish, but nothing has worked for the inflammation. 

However, I’ve now learnt more about long term health issues from prolonged use of these, so like other meds it's for the best. 

 

 

I had felt physically stronger and fitter initially, but after a few months and to this day often have a weakness, like a heaviness which goes down my arms, rather like a taint of pins and needles, or the feeling we may get after a drink but not warm and relaxing.

Also it takes much effort to rise from squatting positions.

 

 

However at times I can do more than I used to, although I’m tired all the time, longer and brisker walks come easier, though I quickly become out of puff through anything more high energy, which is frustrating as these are the activities I love, that at long last I have someone to share with, but I’m too unwell to enjoy these pursuits, and lack interest and enthusiasm, though I feel this is mostly due to feeling physically unwell for such a prolonged time.

I would define the level of this as more uncomfortable than colds/flu, but less so than stomach bugs.

 

 

I suspect that when on the pills which were clearly causing this inflammation, they were masking it at the same time.

By and during winter 2021/22 I was unwell on average every other day.

This gradually merged into most days, some aspects really slowly becoming less severe.

From around January 2022 I noticed increased thirst and weeing.

This ceased after during the summer, after having acupuncture and giving up coffee, but still wakes me in the night a couple of times. 

 

 

However, although that seems positive, I yawn frequently due to the tiredness, and this has become more problematic as often I’m unable to finish a yawn which became distressing when it hits at times like mealtimes and other activities I want to enjoy and get on with.

The inflammation often feels like a yawn behind my face.

 

 

Although I often feel poorly and very tired which makes my mood low, I feel happy and relieved every time I do little things which remind me I no longer have worrying symptoms, like household jobs without fear of the sharp pain in my finger (squeezing cloths, unscrewing lids, would even feel it when holding the hoover, or wearing rubber gloves!)

 

 

Other minor issues have ceased, which I didn't know were connected such as I kept getting feeling of fullness/noise, bits of ear ache in left ear, like wax which would not resolve through the usual treatment that has always worked before.

After learning about the common sinus issues in this group, this was likely to be the case.

 

 

I started having acupuncture in June 2022.

I felt improvement in hormonal and emotional issues. 

 

 

However, I had covid in late June, and although I was no more ill initially than a usual fluey/cold, it did appear to delay progress for a few months.

I gave up coffee, which despite regularly reading on the group its often problematic and some conversations with my acupuncturist I hadn't wanted to face.

However, it did turn out to be causing some aggravation of fatigue, which is well known especially if adrenal fatigue is a possibility.

I gradually reduced it over a week, having been used to a daily strong one, I found some improvement to digestion and less extreme tiredness in afternoons.

It was good to be free of dependence! 

 

 

I wonder how ill my body was becoming all those years on meds despite feeling well until the latter years? 

What exactly was going on in the background to cause such symptoms?

The list of side effects mainly tells us what presents on the surface, but it's what's happening behind this that's really relevant.

 

 

Likewise, I’m hoping now my body is actually at least becoming well, even though I often don't feel it, which is likely due to the hard work and stress of my brain and body healing, repairing, resetting, as often explained in this group and related sites.

 

 

There was no obvious connection to the pills, as the yearly review and blood tests were to check for this, and literature stated that side effects were at the beginning of treatment.

 

 

I had considered adrenal fatigue as it fitted with my symptoms, and also having had a background of prolonged stressful, exhausting and adverse experiences. 

However, it is now known that this kind of fatigue can be caused by these meds. 

The exhaustion I had during long term use was more groggy and I had to have rest/sleep during the day on a bad day, and much contrast between the bad and good days.

Now I notice it differs in that it's more of a weakness.

I can do plenty of walking and some light exercise but quickly tire, become out of puff with anything more demanding.

I no longer can fall asleep during the day; the days are all on a similar level energy wise.

The ache in my leg has diminished.

 

 

I have little stamina physically and mentally, and increased executive dysfunction, but with a neurophysiological cycle, on average every other day, similar to the original precursor and unwell/inflammation days but with variations.

I used to also have heart fluttering often, but this has settled.

 

 

Periods are now extra heavy, which has often been very draining, and often severe pms which I identify as PMDD, which I’ve suffered with before on and off.

It's manageable if I keep using vitex from the herbalist, and also the acupuncture contributes to hormonal balance and emotional well-being.

Periods were gradually becoming very heavy during long-term use, and this has become more apparent during withdrawal which is draining at times.

Interestingly, I discovered through the herbalist that the usually prescribed ferrous sulphate 200 mg is poorly absorbed; we only benefit from around 5 mg of this!

Therefore I now use gentle iron from herbal shop, which unlike ferrous sulphate is gelatin free and most likely has less other additives.

 

 

My sensitivity to clothing (which is part of autism and has been a lifelong issue) gradually increased over the years, even some items I was used to became problematic and I wear many undergarments/indoor clothes inside out but have to sew soft patches over certain sharp seam ends.

Getting shoes and slippers has become virtually impossible, although there are other factors, (minority foot and body size and shape, less availability of shops).

There appears to be extra imbalance of nerve endings, extreme sensory irritation in some areas, and lack of sensitivity in others, which is an exacerbation of the imbalance due to autism. 

 

 

The next thing I intend to do is write a concise factual version of this to the doctor, psychiatrist and gastroenterologist, and Yellow Card Scheme.

 

 

I definitely want to look into where I can publicize this article, to add to all the other documentation.

I talk about this to whoever I can, both formally; (I have an ad hoc job giving talks about Autism and hidden disabilities, e.g., to social work students), and also informally.

 

 

I always recommend this group and the recommended resources.

 

 

I have wondered if there was another way I could have recovered as effectively had I not accepted meds, although it didn't look possible at the time?

If I’d have known the outcome of long term use, would coming off them years sooner prevent such issues? 

 

 

Although I’ve occasionally felt I’ve come to a turning point, things revert back to the usual cycle.

Recovery is so slow I barely know it's happening, just like how the illness gradually crept up.

 

 

The support and learning I gain from this group is invaluable, for myself and my mum who's also effected by long term use and withdrawal.

I know delayed reaction long after stopping meds is common, and that it takes a really long time for the whole physiology to recover which is tiring.

I try to accept and make the best of the here and now if I can, though I often find that impossible.

 

 

Of course, for situations like mine, becoming so unwell in the first place could have been preventable.

 

 

The time, energy and recourses taken by this illness and unawareness of professionals could have been used for my usual role of Peer Advocate helping others in dire situations.

 

 

This is not a complaint about practitioners, but I’m hoping for openness to learning from lived experience, as opposed to sales propaganda from the pharmaceutical industry. This could go some way to alleviate illness.

 

 

The words that come to mind, regarding many treatments and meds, which the standard info literature and many practitioners don't enable: 'Fully Informed Choice'.

 

 

 

 

 

Edited November 1 by Emonda
As requested by Grace47

[Shep]

Welcome to Surviving Antidepressants, @Grace47

 

Thanks for alerting us that we hadn't responded to your post. And apologies for the oversight - it looks like your post was moved from another forum and placed here in the intro/update forum, and it slipped through the usual moderator greeting. 

 

It looks like you're off all drugs since August 2021. Is that correct? How are you feeling? What symptoms remain? 

 

Please only post a couple of paragraphs instead of a lengthy post. You'll likely get more responses that way. 

[Grace47]

Hi Shep, thanks for responding, do you mean to concise my story into a couple of paragraphs? Or to summarize my current situation/symptoms as an add on/in my signature which we spoke about before ?We had conversations when I first posted it & nothing was said about the length; I,ve taken 2 years to finish it, & it means a lot to me to get it out there. I,d really appreciate advice on how to get it posted just as it is, or if there are any other suitable sites, 

Thanks, Grace 

[Shep]

@Grace47 Going forward, you may want to keep to much shorter posts. Please let us know if you have any questions for us. 

 

How are you feeling? 

[Grace47]

Hi Shep , sorry about delay, thanks for approving my post , only just found some of the messages, I find it hard navigating this site still as it's quite new to me! I feel I,m very slowly getting back to what's normal for me. Always quite tired , low energy, weak. At the moment the days I feel the full blown inflammation are becoming less frequent & I think gradually less severe. I,m becoming more proactive but energy, organization & motivation hasn't caught up which can be frustrating, hv to pace myself. I haven't been in any drugs since August 2021, so sure I can only go one way, hopefully 😀

[Shep]

@Grace47 Thank you for providing a list of your symptoms. From what you've written, it sounds like you may have already read a lot on withdrawal forums, but I'm going to post some links in case you haven't seen them yet. 

 

These are links to some general information about withdrawal and the healing process:

 

The Windows and Waves Pattern of Stabilization

 

How psychiatric drugs remodel your brain 

 

Healing from antidepressants. Patterns of recovery  video (4 minutes)

 

You may want to read about fish oil and magnesium. We don't recommend many supplements, but fish oil and magnesium can have a calming affect on the nervous system for people going through withdrawal. Please only add in one supplement at a time and at a low dose.

 

King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

Also, please check out the non-drug coping section and see if you find some ideas for helping with your remaining symptoms. 

 

Non-drug techniques to cope with emotional symptoms

 

Your energy will return slowly in time. If you aren't already doing so, you may want to take a 30 minute walk in the sun everyday, make sure you're drinking plenty of water to stay hydrated, and that you eat a healthy diet. All of these things will aid the healing process. 

 

 

[Grace47]

 Hi Shep, thanks for all this, yeh , I,ve been on the Facebook group for 2 yrs & learnt so much, they often post links for this site. I try to incorporate stuff into the food I eat, like magnesium rich foods, i really like cocoa with raw local honey & yogurt , good alternative to processed sugar I,ve gradually phased out what I can. Fish oil sounds a good idea , been anti inflammatory, my herbalist recommended it once because I was trying starflower oil for hormones  which he said is pro inflammatory, that was a few yrs ago. I do get quite a bit of gentle exercise, inc, walking to get around not ofter v sunny here, so i take vitamin D3. I,v been trying NAC for couple months for tricotilla mania, it hasn't done much for that but has coincided with the inflammation getting less, & also hv been trying chlorella seemed to feel bit better on it but cant be sure yet, it helped with some symptoms i had yrs ago in the yrs following the glandular fever, & this long term use & withdrawal has had similarities. The links look interesting, will try to take time to read 😀

[Grace47]

Hi again Shep, hope your ok,  it's been great having this on this site so I can use the link to spread the word. I was showing someone this morning & I've just discovered the last line is missing. After the last word enable, I intended to put : are 'fully informed choice' 

That should make the last paragraph make better sense. Hope it's ok do have that done? I can't figure how to edit myself, nor if i'm allowed! Thanks in advance Grace 

[Grace47]

How do I make contact with admins please? I have sent two messages over last two months using the contact us option. 

[Emonda]

14 hours ago, Grace47 said:

How do I make contact with admins please?

 

If you have an admin related question, you may send KenA or I a PM.

 

If you have a question about your personal situation, please post that question here.

 

Warm wishes, Emonda