Kieran Meds - PSSD and other stories

[Happy2Heal]

3 hours ago, Jools2816 said:

suggestions on how to reach the UK and London folk as nobody replied to my post re support group. It might be nobody wants but I doubt it. Many thanks. 

 

there's thousands of members here, but many don't check in very often so it's likely to take some time before folks see your posts.

 

Plus many members only come here to post on their own thread for support or advice and maybe take a quick look around, maybe not - early on, a lot of the threads can be triggering.

 

one possible way to reach more members in the UK is to look at their profiles and see who lists their location as the UK/London

and maybe personally invite them (at the same time you'll see how long it's been since they were here on this site, I forget how to do, I think when you hover over their member name? it will show the date of their most recent visit...?

 

another way might be to add a line and/or a link, when you are replying to someone's post, whether they are in the UK or not, about your support group, that way anyone else visiting that thread will see it

 

just some ideas that popped into my head

 

also watch for ppl to post asking about a support group

 

There was one in my area and in spite of me looking for one, I didn't find it and connect with it for at least a year... so it can take some time.

 

I don't know if SA still has a FB page but that's another potential way to find people

 

good luck! 

 

 

[Altostrata]

21 hours ago, Jools2816 said:

@Altostrata @getofflex, do you have any suggestions on how to reach the UK and London folk as nobody replied to my post re support group. It might be nobody wants but I doubt it. Many thanks. 

 

People do want it! Follow your post here 

 

[Kieran]

This afternoon I’ve picked up liquid sertraline in anticipation of tapering from the 12.5mg I have been on for three weeks. I wanted to get the ball rolling and be proactive in self care so the intention would be to start reducing from next weekend.

 

In all honesty, I’ve mixed feelings about this. Of course, I don’t want to be on these drugs any more, after the extensive damage they’ve wreaked on my body, brain and soul. I’m also not sure if I should stabilise for a bit longer, after all the inconsistencies in taking them over the last three years in particular.

 

Since reinstating in June, the neuroemotions of fear/regret/anger/sadness/grudge holding are less pronounced, which makes things a touch easier, especially relationally. My throbbing leg pain is also less severe. I can do my daily walks with less pain, though the throbbing remains. My upper limit is about 10k steps a day. Sexual function returned somewhat, though has worsened over the months with evolving symptoms. The drugs have somewhat inured me to the panic I had about this, not clear if this is welcome or not. The anhedonia remains.

 

Since reinstating I also feel more physical and emotional numbing. Genital numbing has occurred as well as less bodily sensitivity more generally. I’ve felt cog fog, more detachment from myself and others as well as memory issues, short and long term. I’ve always prided myself with having a sharp mind so this has been hard to take. I feel really heavy headed in the mornings, emptier of feeling and have felt head pressure in recent days. I don’t feel like the me of three years ago. Sense of loss around my impaired ability to connect to friends and family. The life long anxiety of ‘not being enough’ feels exacerbated in relationships with friends and family. I’m prone to isolate to avoid the pain of not feeling the same.
 

Picking up the liquid today also triggered some grief. I got very close to stopping meds way back in 2009/10 when I was on seroxat liquid (Paxil) but was advised back on meds rather than to stabilise or increase dosage marginally. Also I feel sadness around being rejected Prozac liquid by my GP in 2020 and my obduracy/stubbornness thereafter when I thought I’d go at a taper alone in defiance at a system which didn’t seem to show care or compassion. And some anger at the psychiatrist I talked to in the same year who was handsomely remunerated for not interrogating my drug schedule or having the requisite knowledge to navigate a safe taper. 
 
There’s a lot to contend with - the withdrawal and PSSD feels like a trauma layered on top of formative childhood traumas. Whether my body is able to heal from these, or whether a cure will be found are unknowns. And that brings with it anxiety and fear of permanence and the prospect of an unlived life. It’s complex and hoping I can hold all this with increasing compassion. I get that it’s important to be positive, but also feel sometimes when positivity is forced upon us is when others might not be able to hold our feelings compassionately. It’s all valid and legitimate. There’s a lot going on for all of us here.

 

Still, I’d like to remind myself that there ARE things I can enjoy. I had a laugh with a friend yesterday, enjoyed a theatre trip to see US comedian Mike Birbiglia. Right now I’m sitting in a south east London park close to my home. The mid September sun is shining, there’s a gentle susurration as the breeze rustles leaves. Squirrels, insects and pigeons with iridescent plumage are getting on with their stuff. It’s peaceful. It feels harder to access or remember the pleasurable things at the moment but they are there to be found. I hope I can find appropriate support too and am really encouraged by the prospect of a London support group on the horizon.

 

A bit of a long one but felt I needed to get a few things down today. Wishing everyone well.

 

 Kieran

 

[Kieran]

Hello 

 

I hoped to get some advice on a proposed start of tapering down from 12.5mg Sertraline starting from this weekend by 10% to 11.25mg liquid equivalent. This is partly precipitated by concerns about heart flutters, racing and awareness of ache in the heart region. Is this common to too high a reinstatement?

 

I did a fairly quick jump down from 25mg to 12.5mg and have stabilised for a month. I’m finding life a struggle right now, trying to process the emotions and physical realities related to a protracted withdrawal and finding it hard to accept them, but also can’t really countenance a drug being in my body any more either. I was recently alerted to the Ancient Greek word ‘Pharmakon’  which means either drug or poison and this feels so pertinent right now. 

 

So I’m going to have a go at reducing I think and might note how this is going here if that’s ok. Does this seem realistic to start reducing? Might I also ask how quickly I could expect to start each 10% taper? Another 12 months of these drugs in my body feels tortuously slow…
 

BTW, Trying to find things to sooth myself and went for a walk in my local park yesterday and listened to this beautiful electronic track by Japanese artist Chihei Hatakeyama. Perhaps you might find it similarly soothing…

 

Thanks for your help

 
Kieran
 

 

[Kieran]

I’m also trying to get clarity around the various physical effects of the nervous system deregulation and have just noted that eating foods can trigger episodes of the throbbing pain in both legs which are a particular feature of my withdrawal reaction. 
 

Any advice or info around what might be happening here, and how I might start working to ease the pain, either from the moderators or other SA members experiencing similar symptoms would be greatly appreciated. (NB reinstatement of an SSRI has made the leg pain more tolerable but still present)

 

 Kieran

[Altostrata]

If planning a 10% reduction makes you anxious, try on a 5% reduction.

[Kieran]

I cycled to the beautiful Greenwich Park today (of Meridian fame), visited the various gardens and took in the autumnal colour. And sadly felt v little. It seems that my anhedonia and ability to feel any pleasure whatsoever is getting worse at the moment. It’s making things feel so tough as it’s so difficult to get through the day when there is joylessness, blankness and the poignancy of remembering what I used to feel and no longer am capable of. I’m praying I will recover emotions in time. I don’t know whether this is a result of the reinstatement or a progression of protracted withdrawal… I so wish this hadn’t happened. Any tips or hopeful words would be appreciated. Kieran

[Altostrata]

I'm not sure if this would be any comfort to you, but probably 90% of our members experience this narrowing of emotional range while they're taking psychiatric drugs and slowly recover from it after they go off.

[Kieran]

Hi @Altostrata

 

Thanks for your reply. the reduced range wasn’t so discernible or problematic until I tried to taper during lockdown. It seems to have progressed since reinstatement into an emotional place that’s hard to bear. It’s very much altered my ability to perceive the world with much joy at all and that’s tough.

[Altostrata]

It's a very, very, very common consequence of tapering psychiatric drugs. Everyone finds it difficult to bear.

[Kieran]

Hello - a note on Friday night in London.

 

I’ve noticed that the throbbing pain in both of my legs I’ve mentioned a few times, which improved a bit after reinstatement, is gradually returning. It’s now morphed into a burning style sensation, present quite often through the day and night, located primarily behind both knees. This area is also really tender. I’m wondering if there’s a link to fibro-style pain here, nerve damage or an autoimmune issue? Just a thought. Any ideas about how I might manage symptoms and how I might investigate what exactly is going on would be appreciated. I know magnesium is widely used and recommended here for instance.

 

In addition, I’ve noticed that my libido, which has been predominantly absent over the last month, suddenly returned a bit this week in a fitful burst, especially in the last 24hrs. Sadly, there’s a significant disconnect between the faltering physical functioning and the possibility of a pleasurable experience. I’ve almost resigned myself to the full on pssd in the last few weeks or so and have found this fleeting return grief-inducing, a tantalising glimpse of a pre-withdrawal life. It also precipitated me obsessively searching online for solutions and info and ruminating about my predicament. Perhaps others could identify with trying to strike a balance between taking self care by finding out about the condition and the more insidious rumination which leads to anxiety, panic and despair. I was a bit swamped by all of this today and didn’t manage to leave my house as a result. I’ve had a low day but I’ll endeavour to get out and exercise tomorrow.
 

I don’t really know what to make of what is going on in my body…Is the sertraline I’ve reinstated petering out in its effectiveness? I’m worried I’m causing further dysregulation.

 

Anyway, I’m planning to taper by 10% next weekend by which time I’ll be down to approx 10mg…

 

All the best

 

 Kieran

[Altostrata]

Withdrawal symptoms will come and go and change into other symptoms.

What is withdrawal syndrome? 
 
About reinstating and stabilizing to reduce withdrawal symptoms 
 
The Windows and Waves Pattern of Stabilization 

 

Paresthesia: Pins & Needles, Numbness, Tingling, Burning Sensations aka Neuropathy 

 

Instant relief for tingling in extremeties

 

Burning sensations from withdrawal -- skin, mouth, head, elsewhere

[Kieran]

Fingers crossed 🤞there’ll one day be some coming and going from symptoms into some improvement. I’ll keep on keeping on in the mean time. 
 

Some jazz by a master will aid the keeping on in the first instance. #harvesttime

 

 

 

Wishing everyone a pleasant weekend.

[Kieran]

Hello

 

Thought it a good idea to check in - I’ve been really struggling over the last two weeks or so, particularly with SI and spent the night in A&E on Friday, leaving the next day.

 

The troubling thoughts are still prominent pretty much every day right now though, which I’m struggling to cope with. I know these are a part of withdrawal but the possibility of these continuing feels hard to work with.

 

Feel a great deal of Neuro-loneliness. It’s hard to feel like engaging because I feel so different from my former self. Yesterday I spent some quality time with my young nephews and nieces though. I have a particularly strong connection to my five year old nephew Finbarr - love him so much. My sister in law texted me today to tell me that he put a stamp on his hand so that when he pushes it I will feel it. It’s bringing me to tears right now (at least I can feel the grief) because it feels like I can’t hold on to experiences. They evanesce and I’m left with this feeling of deep aloneness. Any tips or ideas on holding on to the good stuff in withdrawal?

 

I’m wondering if the reinstatement is outsized and is contributing to the intrusive thoughts or if this is a natural progression of withdrawal. I had more physical pain before going on sertraline (though the brief pssd improvement from reinstatement has ebbed and experiencing progressive numbing) but the mental symptoms seem worse - more intrusive thoughts, detachment, neuro-loneliness, mental absence, rumination etc. I’m therefore wondering whether you would advise a quicker than normal taper off the 10mg or if in your experience that could destabilise further.

 

 Many thanks

 

 Kieran

[littlebird]

So sorry you're going through this! SI and intrusive thoughts are really intense. Can't speak to your questions around meds, just wanted to send some care and solidarity. 

 

15 minutes ago, Kieran said:

Any tips or ideas on holding on to the good stuff in withdrawal?

My partner always says, "Bank this feeling" when something really good happens. I try to be really present in the moment and take it into my heart to help carry me through future rough patches. Sometimes looking at photos can help, sometimes that can add more emotions (especially if I was feeling a lot better when the photos were taken). 

 

Remembering that I've had a "happy file" that I've kept for almost 20 years where I would stick thank you notes from people I worked with, drawings from kids, photos, etc. I've still got that around here somewhere, should peek into it and see what good feelings await. Although it might throw my head for a loop to find a children's drawing, do the math on the date on it, and realize that formerly tiny child is now college-aged! 🤣

 

I've found a lot of benefit in keeping in touch with people and hearing about what's going on in their lives. I'm so glad you have such loving family! Your nephew sounds adorable. 5 is such a special age! Maybe you can put a stamp on your hand and let Finbarr know you're sending love back.

[Catina7]

Hi @Kieran.  I'm so sorry you've been struggling for the past couple weeks.  I've read some of your posts and you've been through a lot.  You're to be commended for hanging in there as best as you can.  

 

There is a topic about Neuro-Emotions that you might find helpful in dealing with a lot of your emotional symptoms.

 

If you're getting worse - not better - with any reductions, then it is definitely withdrawal symptoms you're dealing with.  

 

Hang in there and continue to be patient, kind, and gentle with yourself.  Maybe you can keep a journal or scrapbook to keep track of things that are positive in your life, something to help keep you going when you feel bad.

[Kieran]

@littlebird and @Catina7

 

Thank you for your compassionate replies both. I appreciate it immensely.

 

That’s a great idea of ‘banking’ the good experiences. I might try putting together a little compilation/journal of positive experiences when they arrive and will certainly stamp my hand to reciprocate love to Finbarr. ❤️

 

Woke up earlier from a little sleep and plagued by thoughts. It’s the idea of this persisting in to the long term which I struggle with. Is it possible that I’ll gradually recover? I think I need this hope. The idea of things not improving seems difficult to handle.

[Catina7]

10 hours ago, Kieran said:

Is it possible that I’ll gradually recover? I think I need this hope

 

I definitely think recovery is VERY possible.  I suggest you read some of the success stories if you're in need of hope!

 

SUCCESS STORIES!

 

The ones who heal and recover are the ones who NEVER give up and keep hope alive.  Have trust that your miraculous brain is fighting each and every second to get back to normal.  👍

[Kieran]

Thank you for your positivity and hope for me @Catina7 - it feels harder for me to access that state though. I’ve just woken up and feels like Ground Hog day. I wish I could hang on to hope but it’s hard when I feel so ‘altered’ right now.

[littlebird]

On 11/13/2023 at 5:01 PM, Kieran said:

Is it possible that I’ll gradually recover?

One thing about the human body, it's gonna work on getting better. 

 

On 11/14/2023 at 4:04 AM, Kieran said:

I’ve just woken up and feels like Ground Hog day. I wish I could hang on to hope but it’s hard when I feel so ‘altered’ right now.

Great description! Feels like each day is the same, with a "blink and I miss it, dark already" quality. Can't tell if it's meds or dissociation. Maybe we just gotta try and find any little joys we can, eh? I treated myself to some mint-choc cookies at the grocery store tonight, a lil something to look forward to after dinner. Have you found anything that brightens the days? 

[Kieran]

Hello 

 

Apologies in advance if triggering but I’m in an immense struggle right now. I’ve been in hospital for a week for SI and literally can’t see a way out. I’m in the bleakest, heaviest depression of my life and constantly being plagued by intrusive thoughts of wanting to end my life. I’m a completely changed person - stripped bare of everything. The doctors want to medicate and I don’t know what to do. It’s a catch 22. The ward is making me feel worse but I can’t get out until I feel better. 
 

 

Sorry, I’m desperate and in need of some hope that this is not permanent. I’m in a struggle to survive right now. 
 

Kieran

[Kieran]

Hello

 

I’m experiencing intense intermittent inner restlessness leading to difficult, intrusive thoughts as part of a PAWS/PSSD experience. Would it be recommended that I try out a magnesium supplement to try to help with this? Or is there something else which might help?

 

 Regards

 

 Kieran

[Altostrata]

On 8/27/2023 at 10:07 AM, Kieran said:

Hello 

 

Sense of anhedonia, brain fog, memory issues, emotional numbness, apathy physical numbness ramping up over the weekend, even though I’ve reduced to 12.5mg in the last couple of days. I’ve reinstated for approx 3 months now. How quickly would it be recommended i taper down to a lower level and to stabilise for a while there? Thanks

 

 Kieran

 

This is how you felt after you reduced to 12.5mg sertraline. If your condition got worse when you reduced to 10.10mg sertraline from 12.5mg sertraline, you might go back to 12.5mg sertraline.

 

You have decided that you want medical care in a hospital. The doctors in this situation would usually want to try various drugs to quell the symptoms of which you're complaining.

 

If you don't want medical care in a hospital, where they would either offer you drugs or escalate to involuntary treatment, stop complaining, thank them, and leave the hospital. You will need to cope with your symptoms without resorting to the idea of being rescued by hospital care.

 

You might do well to work with a psychotherapist regarding your suicidal ideation.

 

As peer counselors, we cannot resolve the problems for which you hospitalized yourself, nor can we advise any instant cures for your condition.

 

 

 

 

[Kieran]

Over three weeks in hospital now. Personality - gone, sexuality - gone, essential self - gone. Physique (muscle tone loss) - gone. Invalidating psychiatrist. This is a living hell. Thanks SSRIs. 

[Kieran]

I’m being encouraged to take mirtazapine at a low dosage by the pharmacist at the hospital - currently now on 12.5mg sertraline. I’m reluctant to do so as worried about further destabilising my thoroughly destabilised bodily systems even though my mood is extremely low - would you agree this is the right course of action?

 

 Thank you

 

 Kieran

[medfreeoneday]

Hi @Kieran how are you getting on now?

[Kieran]

Hi @medfreeoneday

 

Thank you for getting in touch. I haven’t been on this site much since Dec as had no replies to messages I posted on here when in hospital. 
 

I’m ‘ok’ thanks. I left hospital at the end of December and have been trying to keep going since then. I’ve found support from others with PSSD on twitter and through the PSSD network.

 

I’m no longer in the acute phase I went into last year which led to hospitalisation. It’s hard to know whether it was simply my body, brain and nervous system collapsing as a result of drug injury or whether reinstating sertraline caused further destabilisation. I guess I’ll never know. I’m currently taking sertraline 10mg and tapering with liquid.

 

The damage caused to me by these “safe and effective” medications is pretty comprehensive though.

 

Alongside the sexual dysfunction, other symptoms seem to have progressed since posting frequently last year. Anhedonia, emotional blunting seem worse, as do cognitive impairments. Depersonalisation and derealisation also quite severe. I have some neuropathy style burning and weakness in both legs.

 

Life is limited and I’m quite isolated. I go food shopping, cook for myself, sleep tolerably and keep in contact with other PSSD sufferers. That’s about it right now unfortunately! Agoraphobia is quite bad so I’m mostly housebound. I try to keep going, living on a daily basis with the profound emotional pain of the injuries I’ve suffered. I struggle to recognise myself. I am no longer Kieran. 
 

I’m donating regularly to the PSSD network fundraiser to support Dr Roberto Melcangi of the University of Milan’s investigations into the etiology of the condition and hope we’ll get some answers at some stage in the future. https://www.pssdnetwork.org/donate

 

How are you doing yourself?

 

I really appreciate your reaching out and wishing you all the best.

 

 Sending support

 

 Kieran

[medfreeoneday]

Thanks for the update @Kieran I’m glad at least the acute phase is over and you’re out of hospital even though you’re still struggling with a lot of symptoms. I’ll DM you so we can continue this conversation if that’s ok.

 

medfreeoneday