WeLiveInHope: Not There Yet

[WeLiveInHope]

Dear All,

 

I can not begin this post with out sharing a massive thank you to you all for all your personal insights, knowledge, and camaraderie. I may have only just joined (and, I never thought I would) but my tapering journey has vicariously benefited via your experiences and your sharing of them on SA so generously. 

 

Like many, I was horrified when I first realised that I was ‘addicted’ to such powerful drugs, after a powerful label (aka diagnosis) was bestowed upon me by a powerful professional (aka psychiatrist) operating within and for powerful industries such as mental health care system and big pharma. 
 

Here’s my drug history…

 

1995 -2000: Addictive sleeping tablet use.

 

2000: Abrupt withdrawal of sleeping tablet.

 

2000 - 2001: Multiple drugs with multiple switching on various doses including antipsychotics, antidepressants, mood stabilisers, and other possibly other psychotropics (forgotten which). As well as sleeping tablets and benzodiazepines (forgotten which), while at most unwell  ‘manic’, ‘depressed’, etc. 

 

2001 - 2011: ‘Stable’ on Paroxetine 20mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). Some occasional sleeping tablets use for approx. 3/4 years during this time, more during the middle of the decade.

 

2011: Abrupt withdrawal of above medication, tfollowed by severe headaches. Some occasional triptan use for 1/2 months.

 

2012: Reinstated Paroxetine 20mg and Carbamazepine Prolonged Release 400mg (200mg morning and night) for 2/3months due to ‘depression’ 

 

2012: Abrupt withdrawal of above drugs. Severe headaches continued this time with some kind of burning prickly type sensations at the face.

 

2013: Trialled multiple drugs to manage headaches, including one antidepressant at low dose  for 1 week (forgotten which), then Pregabalin for 2/3 months (adverse affect followed), then crossed-switched/cross-tapered to another antidepressant (forgotten which) at low dose. More multiple physical difficulties followed (pain again, mostly headaches with the same some kind of burning prickly sensations. but also back, neck and limbs).

 

2013: Abrupt withdrawal from low dose antidepressant for headache. 

 

2013 - 2014: Multiple antipsychotic drugs with multiple switching on various doses, as well as sleeping tablets and benzodiazepines. 

 

2014: Reinstated Paroxetine 20mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). Anxiety and still occasional headaches. 

 

2014 - 2017: ‘Stable’ on Paroxetine 20mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). Addictively using sleeping tablets during this time. Continued anxiety and still some headaches. 

 

2017: Trailed melatonin for 1 week, then promethazine for 1 week (forgotten doses) for sleep. Trailed another antipsychotic (maybe Chlorpromazine) for sleep for another week (forgotten dose). No sleeping tablets during this time.

 

2017: Abrupt withdrawal of all above medication. 

 

2018: Reinstated Paroxetine 20mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). 

2018: Began slow taper off Paroxetine. At 10mg severe headaches began, switched to 10mg fluoxetine. Continued on Carbamazepine Prolonged Release 400mg (200mg morning and night. Continued occasional use of sleeping tablet.

 

2018 - 2023: Stable’ on Fluoxetine 10mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). Continued occasional use of sleeping tablets and and sometimes benzodiazepines during this time. Continued pain, headaches, anxiety. 

 

Note - Throughout the above years I have been an inpatient and outpatient with decisions made for me regarding drugs including abrupt withdrawals. Some withdrawals were planned planned by me when unaware of withdrawal knowledge. Others while I was ‘unwell’ and began by unwittingly missing a dose. Throughout the years, like many of us I have experienced so many ‘symptoms’ either on or off the drugs already well documented throughout the SA website. Above, I have tried to share my main complaints and history as best as I can remember. I would also like to make known that there are some non prescription remedies/herbs/vitamins I have tried and still use including CBD, Omega 3. 

 

Beyond the drugs, I have tried to live a life as best as I can at times working within the mental health care system supporting other patients in various roles. I have recognised some of the more destructive ways I have coped e.g. alcohol misuse, poor/toxic interpersonal relationships, etc. and developed new ones especially with my people such as ourselves aka peers. It’s all still a learning journey, and I am far from perfect and never expect to be.

 

I have been the best I have been in some time since I began my taper in 2018, and my partner and I have decided to have a child and that’s what has promoted me to join the site.
 

I am hoping to understand how best I can taper from Carbamazepine Prolonged Release 400mg (200mg morning and 200mg night). Unfortunately, I began a rather rapid taper 4 weeks ago without realising that it too would come with quite significant withdrawal affects similar to that of AD. Yes, of course I feel rather silly, sad, and annoyed with myself for not realising this given what is on the site already. I genuinely thought as it’s a different type of drug it wouldn’t cause such problems. Alas, that’s not the case and I have learned my lesson fast.

 

The rapid taper went like this: 

 

Original Dose 400mg Carbamazepine Prolonged Release (200mg morning and 200mg night).

 

Week 1 - 200mg morning, 100mg night 

Week 2 - 100mg morning, 100mg night

Week 3 - 50mg morning, 50mg night 

Week 4 - 50mg morning, 50mg night. 
 

Today (still week 4) - reinstated 200mg morning (as more withdrawal symptoms developing which are not being mitigated by Omega 3 and CBD).
 

With it being prolonged release I am unsure how to progress from here. Doctor had agreed to prescribe 100mg of immediate/usual release so I can figure this out. My thinking is I can treat this morning 200mg dose as a ‘rescue dose’ and reinstate at 100mg of immediate release daily but cut it into 3-4 doses spread out in the day. 
 

The brand is Tegretol by Norvotis.  
 

I welcome any advice you all have. 
 

Just to be clear, I am not a Doctor, or any other Physician, and can’t not give advice. Nothing I share should be construed as an expert view please. Nor do I recommend a rapid taper. As mentioned, I mistakenly did not think carbamazepine would cause such a problem with it being a different type of drug. Perhaps I was having a rose-tinted glasses affect on account of wanting a child, which I accept.

 

Thank you. 
 

WeLiveInHope

 

 

[WeLiveInHope]

P.S. Please bear with me as I get used to using this site as it’s not straightforward for me, particularly on my phone. 
 

Best, 

 

WeLiveInHope 

[WeLiveInHope]

For those that do stumble upon my introduction (which I truly hope has not broken any rules), I was not able to get 100mg Carbamazepine conventional/immediate release from the pharmacy so succumbed to ceasing it 5 days ago now. Some of my symptoms improved, particularly pain in my neck and back, especially tail bone, as have the brain zaps (they feel more dulled not and will hopefully be being helped by the Omega 3), and thankfully the cold like symptoms, especially stopped after one capful of antihistamine liquid (low dose for children is enough for me). Also developed caffeine sensitivity.
 

I have updated my GP, who agreed it is probably best to give my CNS a break. 
 

Gosh, I hope I’ve made a turn with it!

 

Wishing everyone well on their journeys.

[WeLiveInHope]

Just an amendment to my original post in that I wish to have stated that I developed new _better_ and certainly not destructive interpersonal relationships, especially with my peers. 
 

I think that wasn’t clear on my original post.

 

Thank you for your time and I am truly looking forward to any responses. 

[Altostrata]

Welcome, @WeLiveInHope

 

As I understand it, you have been on and off psychiatric drugs since 2000, after probably exhibiting withdrawal syndrome after cold turkey from a sleeping tablet (benzodiazepine?).

 

More recently:

On 2/15/2023 at 6:00 AM, WeLiveInHope said:

2018 - 2023: Stable’ on Fluoxetine 10mg and Carbamazepine Prolonged Release 400mg (200mg morning and night). Continued occasional use of sleeping tablets and and sometimes benzodiazepines during this time. Continued pain, headaches, anxiety. 

 

When did this occur?

On 2/15/2023 at 6:00 AM, WeLiveInHope said:

The rapid taper went like this: 

 

Original Dose 400mg Carbamazepine Prolonged Release (200mg morning and 200mg night).

 

Week 1 - 200mg morning, 100mg night 

Week 2 - 100mg morning, 100mg night

Week 3 - 50mg morning, 50mg night 

Week 4 - 50mg morning, 50mg night. 
 

Today (still week 4) - reinstated 200mg morning (as more withdrawal symptoms developing which are not being mitigated by Omega 3 and CBD).

 

Then on 2/15/2023, you went back to 200mg carbamazepine prolonged release carbamazepine prolonged release, then stopped it?

 

6 hours ago, WeLiveInHope said:

For those that do stumble upon my introduction (which I truly hope has not broken any rules), I was not able to get 100mg Carbamazepine conventional/immediate release from the pharmacy so succumbed to ceasing it 5 days ago now. Some of my symptoms improved, particularly pain in my neck and back, especially tail bone, as have the brain zaps (they feel more dulled not and will hopefully be being helped by the Omega 3), and thankfully the cold like symptoms, especially stopped after one capful of antihistamine liquid (low dose for children is enough for me). Also developed caffeine sensitivity.
....

 

So in the 5 days since you've been off carbamazepine, you've felt better? Did you get any new symptoms? What about headaches and brain zaps? How's your sleep?

 

Are you still taking fluoxetine? What times o'clock do you take your drugs, with their dosages?

[WeLiveInHope]

Hi @Altostrata

 

Thank you for having me here, this amazing site, and your response.

 

2000 - Zolpidem cold turkey/abrupt withdrawal was in 2000. To explain, at that time I was using it daily quite addictively at incredible high dose. It was prescribed at 10mg a night, and I could easily and sometimes unwittingly have 10mg x28 i.e. the whole pack in one night. Zolpidem was widely available within my family, and I too was ‘helped’ by a prescriber who provided me as much as these as I required. Anyway, apologies, that’s a bit of rant. What happened sent quite an abrupt withdrawal/cold turkey but the nearest thing. I attempted to use 10mg every few days, arranged to collect it via the pharmacy, to manage my addiction. Psychosis quickly followed as did one of my many encounters as a  ‘inpatient’ in the same year. 
 

23/01/2023 - Carbamazepine Prolong Release 200mg morning and night (original dose) rapid taper began.

 

15/02/2023 - Week 3 of rapid taper by which time I was on 50mg in the morning and evening. (To any one reading this, please know most Prolonged Release tablets can not be tapered by cutting in half, quarters, etc. as it becomes immediate release which I learned the hard way).  On this day, I reinstated 200mg in the morning at 5am and 100mg at 3pm, I also succumbed to 10mg diazepam, continued with my CBD capsules (1500mg x2 once a day) and Omega 3 (1000mg EPA DHA combined 4 times a day) throughout the day. Basically, this day was the catalyst of this messy taper). 
 

16/02/2023 - I suspended all use of the Carbamazepine Prolong Release as I was unable to get the conventional/immediate release from the pharmacy (and I finally got it 2 days later but did not start it). 
 

Symptoms - brain zaps and jolts as well as more dulled sensations as things improved after stopping the carbamazepine. I have slept fine throughout (5-8 hours daily and mainly averaging about 6/7 hours, which is usual for me). Neck and back pain, particularly down the spine and tail bone, almost tension like, again this has improved. Cold like symptoms also developed, also improved now. Inner restlessness and noise sensitivity with some irrationality also improved. Sensitive to caffeine developed, this has also improved but I have moved to just one cup of decaf coffee a day. The coffee definitely exacerbated the cycle of calm and restlessness by week 3. No new symptoms since stopping the carbamazepine. The only one that seems to remain for now is a very sore head, particularly on my left side. It feels like it could be a dulled brain zap, and some pain in my back, again on the left side. 
 

I am still taking Fluoxetine Oral Solution, 10mg at 8am each day (which is how I have always had it). 
 

I was having Carbamazepine Prolong Release, including during this rapid taper at the doses mentioned previously, at 8am and 8pm daily. 
 

The Omega 3 and CBD capsules, I have these throughout the day with my first Omega 3 of 1000mg about 2 hours at 10am. The CBD capsules I take in the afternoon in-between the 2nd and 3rd dose of the Omega 3. 

 

 

[WeLiveInHope]

I don’t know if this a new ‘symptom’, but a randomly developed a bruise on the left arm. 

 

Anyway, I hope I have answered your questions. I couldn’t quite tell which question belonged with which quote. I am hoping to use this site on a tablet soon which I hope will make it easier. 
 

Wishing everyone well on their journeys. We will get there. 
 

WeLiveInHope

[Altostrata]

Is this a serious bruise? I doubt that bruising is connected with your going off carbamazepine, but I don't know. It sounds like you had adverse reactions from it for a long time.

 

It seems you might have gotten away with quitting carbamazepine. Are you still taking diazepam? Do you have other questions about going off psychiatric drugs?

[WeLiveInHope]

10 hours ago, Altostrata said:

Is this a serious bruise? I doubt that bruising is connected with your going off carbamazepine, but I don't know. It sounds like you had adverse reactions from it for a long time.

 

It seems you might have gotten away with quitting carbamazepine. Are you still taking diazepam? Do you have other questions about going off psychiatric drugs?

I don’t think it is, and appears to be fading. 
 

I am trying to stay calm and not frighten myself over what has been an incredibly risky taper (from the carbamazepine) and the damage I may have caused my body as a result. I can only hope I have “gotten away” with it, but my rather sore head and back (both of the left side that feel like a bruise, as though healing maybe from having a brick fall on it) is a reminder that I may not be out of the woods yet. 
 

I only took the Diazepam of 10mg that single day last week. 
 

At this point, I am wondering:

 

- how will I know (as much as one can) that I may need to reinstate the carbamazepine and how may I think about it resuming it if I need to? 
 

- how the fluoxetine may affect me now without any carbamazepine influence? 
 

- when does the carbamazepine ‘wash out’ (doctor’s words) of my body? 
 

So many unknowns. 
 

RE Adverse Reactions: I feel like I have been living with a series of nothing but adverse reactions since 1995. The closest thing my medical record acknowledges is sensitivity to Pregabalin all them years ago. Do you think I have been experiencing adverse reactions from carbamazepine for some time then?

 

 

 

 

[Altostrata]

Carbamazepine has a huge half-life range, so it's hard to estimate if it's entirely out of your body yet, but after a week, you'd probably substantially metabolize what you'd taken.

 

If you've only felt better over that week, you probably have been having adverse effects from carbamazepine, or from its reactions with your other drugs.

[WeLiveInHope]

@Altostrata I think you are right about the adverse reactions from it. Time will tell for sure. Thank you for all your input.

[Altostrata]

Please let us know how you're doing.

[WeLiveInHope]

@Altostrata Of course. 100%. 
 

I noticed my anxiety has subsided quite a bit over the course of the last week. My guess is this may be due to an increased bioavailability of the fluoxetine. Who can say for sure?! However, during other medication changes over the years, I have experienced some calm in the anxiety before the storm, and the constellation of other symptoms that soon follows. I am also mindful that I have my period as I would have expected, which normally doesn’t happen during medication changes for me as my menstrual cycle seems to be very sensitive to any medication. I am hoping that’s a possible sign my body it just may, may, be OK. 
 

I did succumb to another Diazepam of 10mg earlier due to anxiety for buying beachwear for an upcoming holiday in a week. I know! I sure live on the wild side accidentally on purpose sometimes. I am counting my lucky stars that I am having a sabbatical from work to dedicate to this, for ny husband, my peers including you lot on this site! Thank you ALL again. You lot are bl@@dy ace! 

Here’s something nice to put a smile on people’s face’s to end on. I met with the psychiatrist from the perinatal mental health service and their response to me was that they have no value to add to me, I know more than them, I am well researched etc etc. I said I know and can the include that in the letter they send to my GP. 

 

Ridiculously cruel that we are own research assistants and guinea pigs, so not too funny really.

 

Peace and love to you all. I am sure I’ll be checking in on the forums and hopefully connect with others now that I have joined this side. It’s wonderful to be here! 
 

WeLiveInHope

 

 

 

[Altostrata]

Fluoxetine is not an anti-anxiety drug.

 

Have a great time on your vacation.

[WeLiveInHope]

Thank you. 
 

With the fluoxetine, I wondered if it could be affecting my anxiety as some people have thought it had helped with their anxiety. 
 

Of course, the type of drug it is and it associated risk with ‘mania’ and my own risk of ‘psychosis’, I am wary that i need to be mindful of this going forward whatever else happens. 
 

For now, keeping calm and tentatively enjoying thoughts of holiday.
 

Best of care to you @Altostrataand all others that stumble upon this.

[WeLiveInHope]

How am I doing? 
 

WOW! It has been quite a few weeks. Yes, my ‘conceptionmoon’ (apparently there was a word for it) was a success and I am some weeks into my pregnancy (early days of course) without going back on Carbamazepine. 
 

I can’t say I have endured any discernible withdrawal effects from the rapid taper 🤞🏽(last dose 15/02/2023, during WC 20/02/2023 the withdrawal effects of some pain in my head, back, neck, some brain zap sensations, anxiety - this was mostly likely situational induced due to planning around the upcoming holiday the week after - began settling out by that weekend).

 

After the weekend, on holiday I didn’t sleep for days, I was also dehydrated and needed electrolytes. I do not know for sure if some of this was due to coming off carbamazepine or the jet leg, not to mention the horrible mosquitoes bites I suffered (which finally seem to be at the end of their healing). 
 

Since then, with the pregnancy of course, I have been having lots of symptoms which again could be early pregnancy symptoms or withdrawal. 
 

At this moment in time I believe my symptoms of holiday were due to jet lag, and current ones are related to pregnancy.

 

I don’t know if I will begin to taper from fluoxetine any time soon, but it is something I have wondered again. To be honest, resuming my taper of it at some point is never too far from my mind any way.
 

Peace and Love to everyone. I hope your own journeys are going as well as can be expected.

 

WeLiveInHope 💚
 

 

[Altostrata]

Good to hear you're doing well, congratulations on your pregnancy. What drugs are you taking now, at what times o'clock and dosages?

[WeLiveInHope]

3 hours ago, Altostrata said:

Good to hear you're doing well, congratulations on your pregnancy. What drugs are you taking now, at what times o'clock and dosages?

Thank you.

 

At the moment I take Fluoxetine 10mg at 8am each day. 
 

I still take Omega 3 at approx 1000mg EPA and DHA 2/3 times a day. One dose in morning around 10am and another in the afternoon at 2pm. Also, Vitamin D at 4000iu at 10am.
 

Also Folic Acid 5mg at 8am, and a prenatal vitamin once a day at no fixed time. 

[Altostrata]

Best wishes for your pregnancy and delivery.

[WeLiveInHope]

Many thanks. The past few weeks have been incredibly surreal. 

[Altostrata]

Hello, @WeLiveInHope, how are you doing?

[WeLiveInHope]

On 5/31/2023 at 11:56 AM, Altostrata said:

Hello, @WeLiveInHope, how are you doing?

Hello there, 

 

Thank you for thinking of me. I too have been thinking of all of us that live with such awful inflictions and histories. Quite a bit actually. Alas, my health has been on a yet another rollercoaster and I have been distracted from updating. Only this week have I had the strength to, and it was a nice coincidence to find that somewhere across the pond/up in the ether someone was thinking of me too - remarkably even without ever meeting. Thank you! This made me smile.

 

In the interest of anyone that could be helped by my journey, I shall try my best to share recent events without too much reflection hopefully(bear with me). 

 

As mentioned one of the above posts:

 

“Since then, with the pregnancy of course, I have been having lots of symptoms which again could be early pregnancy symptoms or withdrawal. 
 

At this moment in time I believe my symptoms of holiday were due to jet lag, and current ones are related to pregnancy”. 

 

On the same week of conception (FYI - no IVF, just my crazily sensitive body being good at letting me know these things) I was incredibly fatigued with lots of day sleeping, so much I struggled to stay awake at any time of the day. As the weeks progressed I began having horrible cramping not just in my abdominal area, but all over. Other pains included severe joint pain, worsening of skin issues, worsening of cold intolerance, far too many to recall now as they were so varied, sometimes quick flaring and fluctuating. None that gave me reading to believe that they were due to my recent carbamazepine withdrawal. Of course, the midwife assured me it was normal and noted in my record that I was having ‘anxiety’ (I have lived with anxiety for such a long time, and an incredibly excessive amount over the last few years with no describable trigger until I soon developed precipitators anxiety as a result anyway) and suggested I have private reassurance scan. 

 

By week 4 (by conception not the plus 2 week universal system for pregnancy dates) I was feeling lightheaded and called the GP instead of midwife. They took a series of blood tests (TSH, T4 then later for antibodies which were raised) and it was revealed that I was Hypothyroid and I have begun my journey with healing my thyroid with a high starting dose of Levothyroxine (apparently it is usually started on a low dose before titrating up or down according to blood tests and symptoms. I assumed the high starting dose was suggested due to risks to the pregnancy). I had 2 previous TSH tests across 6 months ish prior to pregnancy. 1 was raised over range, while the other was raised but still within range, but on reflection too high for preconception. (For anyone wishing to know more about thyroid and ranges see some basics on https://www.btf-thyroid.org/thyroid-function-tests and know that the ranges to achieve for pregnancy are different to the general population and are also trimester specific).

 

By week 5 (again based on conception) I was bleeding at my booking appointment. The less said about the midwife and my experiences of so called maternity care, the better, as I was left with no choice but to have ‘natural management’ and lots of private reassurance scanning with my pregnancy loss. The same week we had a holiday booked in the countryside with a hut tub outdoors. It is my no means a small thing to state that it was the hot tub that let me pass my loss with very little pain, and of course the support of my husband (who’s birthday it was that same week). 

 

One of the first things I did was search on here for people’s experience with their thyroid. I noticed there had been some comments including by you. But, I required more focussed discussion so I also joined another patient peer-to-peer led site on thyroid (patients make the best doctors don’t they? ☺️) to guide me. I brought my next blood test forward as the insomnia and other symptoms were no longer sustainable. I am glad I did as the blood test showed I was ‘thyrotoxicosis’ by being over medicated. By then it was around 6 weeks of being on the large starting dose.

 

Thankfully the GP agreed with my plan on how to address it and we will be keeping a closer eye on it going forward and I am now on a reduced dose of the Levothyroxine. The aim is to bring my TSH to around 1 preconception and I also organised an a referral to preconception endocrinology.

 

The main thing I have to share is that that initially I felt quite well with the Levothyroxine. My excessive anxiety vanished. I was shocked. I still have very little to nil anxiety now. My joint pain and fatigue soon followed. 

 

Do I think I may have always had hypothyroidism (as it transpire it runs in my family) and I was misdiagnosed with mental health diagnosis instead? Or, that years of psychotropic use or withdrawal caused me to become hypothyroid? 

 

I haven’t had a single headache in months. With my anxiety disappearing and I am inclined to believe this may have been the source of my difficulties (of course confounded with iatrogenic harm) all along.

 

My next step is to begin tapering from the fluoxetine. I am trying to decided on my approach for this as I have part motivated by recent events and the fact that my particular brand of fluoxetine is consistently having issues with supply. I fear if I don’t try and manage a control taper now, an uncontrolled one will be decided for me when I ran out stock and the pharmacy can’t get anymore. 
 

I hope you are well? And wishing everyone well on their journeys ❤️‍🩹

[Altostrata]

15 hours ago, WeLiveInHope said:

Do I think I may have always had hypothyroidism (as it transpire it runs in my family) and I was misdiagnosed with mental health diagnosis instead?

 

This is possible. Good that you got your thyroid dosage sorted out.

[WeLiveInHope]

35 minutes ago, Altostrata said:

 

This is possible. Good that you got your thyroid dosage sorted out.

Thank you. Not quite on the optimum treatment yet, alas time will tell.

[WeLiveInHope]

Psychotropic Drug Deprescribing Clinic in North East London NHS Foundation Trust

 

Does anyone know how one can get a referral, or what even is the contact details for the above clinic led by Dr Mark Horowitz I believe? 

Edited June 26, 2023 by Shep
added title after moving from another forum

[Shep]

@WeLiveInHope Please note I moved your last post from the Tapering forum and placed it here in your intro/update thread. Please continue to ask questions here.

 

This is Dr. Mark Horowitz's website with a contact form:

 

markhorowitz.org/contact/

 

If you have a link for that clinic you mentioned, you may want to see if there's a contact form on their website (I didn't have time to do a search this morning). 

[WeLiveInHope]

7 hours ago, Shep said:

@WeLiveInHope Please note I moved your last post from the Tapering forum and placed it here in your intro/update thread. Please continue to ask questions here.

 

This is Dr. Mark Horowitz's website with a contact form:

 

markhorowitz.org/contact/

 

If you have a link for that clinic you mentioned, you may want to see if there's a contact form on their website (I didn't have time to do a search this morning). 

Thank you.

 

Also, I found the name of the clinic on SA itself and my google search has been of little use. I did eventually find a contact for Mark regarding the clinic (after I posted) but I have not heard anything back. I do not suppose I will. 

[WeLiveInHope]

Well, today is the first day of my taper from Fluoxetine (10 mg Prozep Oral Solution) using the 10% of the original dose. So, 9mg as of this morning.
 

I have been propelled to come off my 5 year hold from tapering from ADs (recap: I have been using fluoxetine at 10mg to manage withdrawal symptoms from coming off Paroxetine. Orginal dose of Paroxetine was 20mg and had a slow gradual taper from it , but withdrawal symptoms became unmanageable at 10mg, and that’s when I swapped to 10mg fluoxetine. Main withdrawal symptom at that time was as severe headaches) due to:

 

1. consistent problems with supply of the drug and my fear is that a withdrawal and the risks that come with it will be forced upon due to this is I don’t attempt to manage my withdrawal now while I have some stock. 

 

2. wanting to have a baby in a the near future and not wanting that child development (or my own parenting) to be impacted by by either use or withdrawal of ADs as far as possible. 
 

3. my recent diagnosis of hypothyroidism makes me feel I do not want my body to be poisoned by this drug any longer as there seems to be enough to suggest that it’s possible the fluoxetine caused the hypothyroidism based on the constellation symptoms that I originally put down to just withdrawal. I can’t no for sure, but I am willing  to take the risk and find out for the sake of my health. (yes, I have wondered if it is completely mad of me to tinker with my fluoxetine use now when my treatment for hypothyroidism has not yet been optimised. However, the fact that withdrawal and indeed many other things such as quoting smoking destabilise hypothyroidism, as such it’s treatment. it also makes sense me to reach an optimised dose for it with these things in tow).

 

 

It surely would have been nice to have much more focused support during this time, alas we are on our own with this more often than not. I have informed my GP about my plan (normally, I just tell them when necessary since they are not of much use, but how refreshing is it to talk to a GP now that they can’t deny complicated withdrawal symptoms?!). 
 

I am hoping I’ll be OK, and my husband and I can manage this. Grateful that I am currently not working to have fuller capacity to do this. 
 

 

[Catina7]

I wish you all the best with your taper!  Having the support of your spouse and not having to work right now will aid in your healing.  YOU'VE GOT THIS!  💪

[WeLiveInHope]

2 hours ago, Catina7 said:

I wish you all the best with your taper!  Having the support of your spouse and not having to work right now will aid in your healing.  YOU'VE GOT THIS!  💪

Thank you so very much! This means a great deal to me right now. 

[WeLiveInHope]

It looks like NICE have finally accepted the likes of me may suffer psychosis as a result of sleeping pills withdrawal https://www.nice.org.uk/news/article/decision-aid-to-guide-healthcare-professional-patient-discussions-on-sleeping-pill-prescriptions-published 

[Altostrata]

Dr. Horowitz can accept only patients from his catchment, which I believe is North East London NHS Foundation Trust

[WeLiveInHope]

What’s going on? 3rd day of taper from fluoxetine 10mg to 9mg. Already feeling withdrawal headache (thankfully mild enough yet to be managed by CBD etc.). Can this truly be expected with fluoxetine’s long half life. Very bizarre my brain has picked up in an absence this soon. 

Any insights gratefully received.

 

[Shep]

You may want to updose, @WeLiveInHope It's likely 10% is still too much for you or it's too soon to taper. 

 

Here is information on a micro-taper, which is gentler on the nervous system.

 

Micro-taper instead of 10% or 5% decreases

 

You may want to do the Brassmonkey Slide, which involves small weekly reductions, as opposed to one larger monthly reduction.

 

The Brassmonkey Slide Method of Micro-tapering

 

In your signature you have: "2023 (March to present) very infrequent use of sleeping tablets and benzodiazepines"

 

How often are you using sleeping tablets and benzos? Please list the dates you've used them in the past month, if you have that information. If not, do you know if it's more than 2 or 3 times a week? 

[WeLiveInHope]

3 hours ago, Shep said:

You may want to updose, @WeLiveInHope It's likely 10% is still too much for you or it's too soon to taper. 

 

Here is information on a micro-taper, which is gentler on the nervous system.

 

Micro-taper instead of 10% or 5% decreases

 

You may want to do the Brassmonkey Slide, which involves small weekly reductions, as opposed to one larger monthly reduction.

 

The Brassmonkey Slide Method of Micro-tapering

 

In your signature you have: "2023 (March to present) very infrequent use of sleeping tablets and benzodiazepines"

 

How often are you using sleeping tablets and benzos? Please list the dates you've used them in the past month, if you have that information. If not, do you know if it's more than 2 or 3 times a week? 

Hi Shep, thank you for this. 
 

Z drugs and Benzodiazepines definitely not more than 2/3 times a week. By infrequent use, it’s usually a dose of 2 every few weeks. These are not drugs are take regularly but are part of my regime when required. For reference, by last dose of diazepam was in March, and my last dose of Zopliclone was 1 month ago. These are only taken when absolutely all else has failed. 
 

I shall have a look at Brass Monkey scale. 

[Altostrata]

19 hours ago, WeLiveInHope said:

Very bizarre my brain has picked up in an absence this soon. 

 

A one-off symptom is not very meaningful. Please let us know if headache persists. It may be your withdrawal pattern and last only a few days.