extraordinary From love and joy and faith to desperation

[extraordinary]

My story like so many on this site is one of despair and disbelief on so many levels. At 50 I had enjoyed an adventurous extraordinary life and 25 years of happiness with my wonderful partner Michael.

 

I was prescribed Metaclopromide for vomiting after the Covid booster and my whole life changed in 10 days. An awful dystonian reaction caused months of being medicated with multiple drugs including benztropene and multiple benzodiazepines all of which made me pretty much psychotic. I was unable to sit still and was walking 16km a day to try to relieve the desperation and benzodiazepines caused sobbing and suicidal actions like trying to run into traffic and swing off balconies.

 

A neurological assessment diagnosed a functional neurological disorder and all meds were removed in a few days except for temazepam for sleep landing me sobbing in the emergency department and then in a psych ward where I was prescribed mirtazapine, seroquel and diazepam in addition to the temazepam.

 

Passed out on initial dose of mirtazapine but kept on it despite continuing reactions on the basis that 'no-one ever passed out from 15mg mirtazapine' and it would take weeks to feel the drug's benefits.

 

Sent home after 4 days. After nearly six months of anxiety and agitation and episodic fits of rage and despair on top of horrible physical and neurological symptoms my GP referred me to a private psychiatric hospital to be weaned off temazepam as he thought it was not good to be on it for an extended period and I wasn't successfully reducing it myself beyond 15mg per night. I had by now removed ct diazepam and seroquel as both proved to worsen symptoms. The psychiatrist I saw said she thought the mirtazapine was the main culprit for the symptoms and removed me from 15mg in 3 days and started me on lamotragine.

 

Over 4 days I became less caring and numb before having a complete dissociative break. I didn't remember my past with any clarity or emotions I was scared to see Michael who had been my one place of love and joy in the whole nightmare - I sobbed uncontrollably in between completely blank episodes. I didn't love anything I loved before  - I felt overwhelmed with thoughts and feelings of hate for everything but particularly for the things in my life I loved the most - Michael,  nature, walking.  Angry and sad beyond description with my life and the world.  Mean negative thoughts and feelings that broke my heart and brought me physically to my knees and caused vomiting I was so grieved by them. All my memories my life were suddenly regret and shame and falsehood. 

 

I swore at Mike and I never swear and was certain our relationship was over. I was angry with him for no reason and couldn't believe I had become so monstrous. On top of it all Mike was having to undergo chemo for the 3rd time and in the past it was something we had taken on together so amazingly  - he is such a brave beautiful unselfish man - now I was just completely uncaring and had to stop myself running out of the hospital room when he was having an infusion. Actually hid in the bathroom until I could force myself through the dread of going back.

 

I can't explain or express how completely the opposite I was for 25years. I was scared of crazy stuff like seeing him or his toothbrush or clothing  - I loved buying him nice clothing and washing for him was always a joy - now I am scared when I see or hang his clothes on the line.  It devastates me just as much every time as we are such a close happy unified couple. My other great love is Britain where we lived 15 years together so happily. Suddenly the whole time seems pointless and wasteful and I look at photos that used to be my favorite images and am scared or blank. We tried travelling back to Britain in the hope that we could recover memories and feelings but I just sobbed when we arrived in London.

 

I remain disconnected and despairing and angry though I do have windows where I seem to return to something like normality for an hour or half a day.  In between I am convinced I can't trust Mike and that maybe we were never happy and I never did love Britain. Then I have a meltdown and afterwards apologise and think it's all a bit ridiculous but then I end up back in the pit of doom or the next crazy fear.

 

The thing now is I am off everything except 15mg temazepam since December 2022. I tried 1 Zoloft tablet in mid January in desperation and immediately couldn't speak or feel anything.  Was a complete zombie for 24 hours after which I had total anhedonia. Just dead. I have been too scared to take anything since.

 

I noticed some improvement after 2 weeks without a major stress in Glasgow but had to change temazepam brands April and seemed to revert back to the worst of withdrawal since then. Mike collapsed and had to be admitted to hospital in Glasgow for urgent chemo treatments and I was on my own scared to see him and scared to go home and ended up in hospital for 5 days dreading having to leave the room when I would normally have given life and limb to be by his side.

 

The hospital reduced my temazepam dose from 15 to 10mg as they thought an adverse reaction to the new med seemed obvious but were not keen to reduce further in case it was withdrawal and not adverse effects. Now am just confused  - recognise that this is a process and it's awful and this site has been a life saver.

 

I am walking and trying to find motivation to clean my teeth and eat and help Mike but just devastated.  I don't have this precious time to waste when he is fighting for his life.  I feel like I have abandoned him at the worst time and know he would die before abandoning me. His support has been extraordinary.  Just looking to express how monumental this whole thing feels and how hard it is to remind myself this isn't me and isn't true!! Exhausted and needing advice and encouragement. So grateful for your site. 

God Bless always xx 

Edited July 4, 2023 by Altostrata
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[Onmyway]

Dear @extraordinary, 

I am so sorry that you are going through this. 

This is not unusual in withdrawal or as a side effect of these drugs. What you need to do now is hang in there. Similar things have happened to me and the good news is that this change in personality/preferences does go away slowly. If you don't think this is due to the temazepam, then your best bet is to not change anything and simply endure - float through this as if you would float in water to avoid drowning. 

 

Remember, this is going to get better!!! 

 

Could you pls fill in your drug signature? It will help us help you better. Here are the instructions.

 

[extraordinary]

Thank you so much for this kind encouraging reply Onmyway. I have completed my drug signature  - hopefully it's ok? I appreciate the links and info too. I have been reading a lot of advice on the site about how to deal with emotional symptoms which for me have been so much more destructive and devastating than the physical- not thatthey aren't awful too. Not knowing who you are or why you made decisions about your life you were previously joyful and grateful for- thinking and saying things you have never thought or said and having mean and critical thoughts about everything but particularly my husband who I haven't thought a negative thing about for 25 years  - we never argue and are just do happy to be together all the time.  Ibwas happier after 25 years than ever - suddenly to not even feel like I care or even like him - to suspect him of tricking me into the relationship and feel scared and cry when we are together as I am afraid I will think something mean or not want to see him. Gosh - it's beyond heartbreaking for me - how do I not even care that he is sick.

 

So completely not who I am or thought I was and it seems so real. I've literally run out of the house a few times and just felt desperation to get away  - I don't even know where I am going.  Then I come back sobbing because I don't want to believe I want to leave and then I seem to return to a place where it all seems like that isn't true and it's such a relief that my whole life isn't  lost or wasn't in fact a lie but then it seems just as real again the next time.

 

It's just been so awful because not only do I love him he is my best friend and greatest comfort and now it's just hard to feel comfortable anywhere- except with my sister and brother but actually I wasn't normally that close to them and suddenly I have wanted to go and live with them when we have lived away from family in Britain and overseas for the best part of 20 years.

 

I'm aware I have to float through the lies and fears and compulsions and try to forgive myself for thoughts that aren't like me as they are symptoms not the real me as I am constantly fearing. But this is just beyond belief to me. I am determined that it won't steal my life! Amen.

 

Re drugs it's hard to know if the temazepam isn't helping at present- I didn't think it was problematic until I had to take the Teva brand in the UK. I felt like I had taken double the dose - withdrawal symptoms got much worse again. But the change happened when Mike collapsed and ended up in hospital and I had to travel to Glasgow on my own and lots of stresses occurred.  I also crashed out and ended up in hospital and they reduced the dose from 15 to 10 and I felt less drugged but not sure I didn't get much worse about 2 weeks after with emotional paranoid outbursts. I am back to 15 and think more stable past few days 🙏

Edited July 4, 2023 by Altostrata
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[Altostrata]

Hello, @extraordinary 

 

Please put paragraph breaks in your posts, large blocks of text are difficult to follow on the Web.

 

When did you increase from 10mg to 15mg temazepam? Are you taking any other drugs?

 

What times o'clock do you take your drugs, with their dosages?

 

As I understand it, you didn't feel any different on 10mg temazepam, why did you increase it again?

 

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. We need to know how you feel before and after each dose. This can show if your symptoms are adverse effects from one of your drugs.

[extraordinary]

Noted re paragraph breaks and  apologies for this delayed reply. 

 

I increased to 15mg about 4 weeks ago because I was suddenly much worse - basically out of control some of the time - about 3 or 4 weeks after the hospital dropped my dose from 15 to 10. I did immediately feel less drugged and fatigued on reduction but many other symptoms slowly emerged at the 3 - 4 week point and I wondered if increasing again might help stabilise. It seemed to improve things over a week or so and I had even a 2 day window.

 

Obviously hard to tell with hospital stays for my husband and constantly stressed and moving multiple times in the UK whether waves and windows were happening due to stress or ongoing problems due to too fast taper of mirtazapine and adverse reaction to lamotragine and Zoloft. Just guessing my way through trying to cope really. 

 

I take 15mg temazepam at 8.30 - 9 at night - I am  not taking any other meds. Usually sleep well except around menstrual cycle when I often experience nightmares and wake multiple times in terror or sweating. 

 

First waking tend to be scared and disconnected and more prone to  being convinced of fearful thoughts or ideas previously foreign to my personality or history, though sometimes mornings are ok if I can calm myself through this time of fear. 

 

Usually afternoon is the worst time with intrusive thoughts and despair and anger and agitation increasing as the day goes on. Lately struggling with fear of going anywhere or overwhelmed by just deciding to dress or what to wear.

 

I often but not always find evening is a time of relief and go to sleep ok. 

 

Things are worse overall since arriving back from the UK 3 days ago. I had a good window just before leaving. Also a good window yesterday evening and night. 

 

This morning major neuro emotions and fears and overwhelmed again by getting up or doing anything. 

 

Exhausted by the rollercoaster. 

 

 

 

 

 

[extraordinary]

I will begin notation of symptoms and times as requested 

 Thank you 

[extraordinary]

7 a.m. Woke feeling disconnected and thinking my husband and I should take a break 

7.30am drank coffee 

8am made myself eat breakfast- didn't want to 
10 a.m head and eye pressure low angry mood set expression and intrusive negative thoughts but belief that we needed a break went and I had some very brief windows of feeling 

11.00 took husband to physio appointment  - scared of feeling disconnected but actually wasn't feeling so bad

12.30 went grocery shopping intrusive negative thoughts back a bit 
1.00 Ate lunch
3.00 went for a walk about 1hr
Afternoon evening lots of fearful thoughts and feelings 
6 p.m. Ate dinner
8pm went to bed - took 15mg temazepam - deep emotional pain and unsettled 
9pm Fell asleep
4:30 a.m. Woke but got back to sleep

7am woke feeling disconnected 

[Onmyway]

It's not clear from your notes if the emotional pain preceded the temazepam or came after. 

Have you considered seeing a therapist to discuss these doubts/feelings? I think the IFS modality may be helpful here - it deals with different parts wanting different things - i.e. one part of you wants to take a break and another feels distraught by that thought. 

 

[extraordinary]

Emotional pain was before temazepam. 

Yes I have but am aware that I felt completely the opposite of ever wanting a break before the lamotragine and Zoloft and fast taper off mertazapine and seems linked to horrible negative thoughts and feelings that emerged about my whole life and my husband after so thought best to just try to ignore as they are symptoms not my real feelings.  These thoughts and doubts are causing me so much distress and misery.  I don't know how I can think or feel this way  - I loved my life. It's really breaking me.

[Onmyway]

Therapy can help you manage these feelings even if they are not caused by underlying issues. You seem to be very scared of them and not facing them makes them scarier so it becomes a self perpetuating vicious circle. 

[extraordinary]

Yes that's exactly what is happening. I am questioning everything - my life choices my personality who I am whether I have ever been kind like I have been pretending and suddenly lost connection with and confidence in all the things I love it have enjoyed and doubts are causing me so much distress I think because it happened in a moment on the lamotragine-in a moment my whole life that I loved and my personality and feelings  seemed to implode and I have been floundering and angry and mean and devastated and lonely ever since  - except in a few brief windows where it all seems like that isn't true at all

[Altostrata]

How long have you been taking temazepam on this schedule? Do you feel better after taking temazepam in the evening?

[extraordinary]

I've been taking temazepam between 10 and 20mg for about 2 years and on current 15mg dose since early June 2023.

 

I noticed what seemed an adverse reaction to temazepam only when I changed brands of necessity in the UK in late March this year. The wd and adverse reaction symptoms I got after abrupt removal of mirtazapine and doses of lamotragine, diazepam and Zoloft in December 2022 seemed to become much worse again on changing brands of temazepam though I recognise that the change coincided with my husband's collapse and admission to hospital for cancer treatment so could have been a wave brought on by stress. Still  - the stress was already present to some extent and symptoms did appear extreme with the brand change. 

 

The symptoms were so bad I was admitted to hospital in early May where the dose was reduced to 10mg from 15mg. As previously stated I felt less drugged but extreme neuro emotions and fears and overwhelm continued. I experienced a few episodes of mania and screaming explosions and crying about 3 weeks after the reduction so increased to 15mg early June in which appeared to stabilise symptoms.

 

I had some good windows early July but since returning to Australia of necessity for my husband's treatment and changing brands of temazepam again I believe I am getting a similar up tick in symptoms, though I again recognise the change of medication brand coincides with additional stress. 

 

So - short answer been on 15mg temazepam since early June but have been on temazepam between 10mg and 20mg for about 8 months prior to being given Metaclopromide in April 2022 when the mental instability first kicked off and through to and since the main crisis in the psych hospital in December 2022.

 

 

 

 

 

[Shep]

@extraordinary Please keep posting your daily notes like you did in this post here. The mods will be looking for any patterns that may emerge, so it can take a few days of notes to really assess where you're at and what to do going forward. 

[extraordinary]

Will do and thank you.  Currently in the hospital on a mattress as Michael was admitted today with an infection but will try to post regularly over the next week. Thank you again 

[mstimc]

On 7/19/2023 at 4:21 AM, Onmyway said:

Therapy can help you manage these feelings even if they are not caused by underlying issues. You seem to be very scared of them and not facing them makes them scarier so it becomes a self perpetuating vicious circle. 

 

On 7/11/2023 at 3:48 PM, extraordinary said:

Usually afternoon is the worst time with intrusive thoughts and despair and anger and agitation increasing as the day goes on. Lately struggling with fear of going anywhere or overwhelmed by just deciding to dress or what to wear.

 

Hi extraordinary.  From the description of your thoughts and feelings, its sounds like you're dealing with obsessive/compulsive issues, probably driven by your WD.  The intrusive thoughts, self-doubt, and inability to make decisions, as well as heightened sensitivity at certain times of day are signs of anxiety-driven obsessive-compulsive thinking.  There are a lot of ways you can help yourself manage your thoughts and get back some perspective, like CBT-ERP practices.  What's great is they're a lot more effective in the long term than medications as long as you put the work in to practice them and make them part of your coping toolbox.  I had terrible anxiety/OCD in withdrawal and what I learned really helped me get through it. 

 

Prayers to you and Michael!

 

 

Edited July 23, 2023 by mstimc

[extraordinary]

Thank you mstimc - this helps and I think you are right. I was really confident and happy- I am now constantly fearful of thoughts and feelings thatcarexso negative and mean and the opposite of who I was.  I'm  scared nothing was everreal or true  - scared to go out or stay home. The lows of moods are not something I have ever experienced  - learning that the moods produce the thoughts and feelings not the other way around. Though they obviously feed each other. It's exhausting  - I just want to focus on the important things like Mike's health and our time together. Such a waste feeling like I don't care and am scared or blank. 

[mstimc]

You also need to learn to be kind to yourself. You're not choosing to have these thoughts and feelings--they're being caused by withdrawal from toxic drugs you were told would help.   You are still you, and your true self will be restored as you move toward recovery.  Part of anxiety and OCD-like behavior is judging yourself way too harshly, and blowing every little perceived mistake way out of proportion.  That just traps you in the cycle of fear and indecision.  Nobody expects you to be perfect.  You are doing the best you can under the circumstances, and that's all you should expect from yourself.

[extraordinary]

Thank you again mstimc and for your prayers. I have to keep reminding myself that the thoughts and feelings aren't mine - the fear that they are is what fuels the anxiety. I think I have neuro fears and other emotions- afraid of Mike in case I see him and don't feel anything or worse think something negative which I find heartbreaking.  I fuel the fear then whenever we are together as I am so aware of wanting to feel positive and safe like I always did. 

 

I am afraid I don't know who I am or that need to get away to feel safe but I never felt like that - he was always my safe and happy place and now I don't have that I am lost and doubts myself  - afraid of his toothbrush and other possessions- afraid of my license photo and my email address which I have had for 25years.  Detached from all our travel memories and experiences that brought joy. I seem to hate walking and cooking which were my two favorite things- if I could take a walk with Mike it was a good day! Now I cry when I walk or am so sad and angry I don't want to do it.

 

Trying to care for Mike in the hospital now and don't want to leave in case I don't want to come back.  This morning I felt like I didn't care he was sick. I am so guilty and lonely all the time and just miss my best friend in the world. So sad and scared. Keep having terrible heart stopping fears that I need to face the truth about myself that I never faced- but when I try face it I am just more confused and scared looking for it. Keep trying to remember I am only this way since the dissociative episode in December  - everything changed in a moment. But I have a terrible fear that I was awoken to my real self who never loved anything or anyone and doesn't want to  - the moments when I feel happy or laugh feel like pretence.  I tell myself it's not true but then I have these crazy moments of fear in response to random triggers or thoughts and I am right back in the pit of doom. 

 

I have read the coping with emotional symptoms info on the site and it works sometimes but other times the feelings are so strong I don't believe myself when I tell myself it's not true. Sometimes I am at my best when I look at Mike and really see him in the moment. I feel God spoke to me about this - said keep living in reality and reality will then start to live in you. But then I start sobbing in front of a bowl of cereal I just can't face eating or in a shower that feels just too difficult and wonder how I will ever find my way back. 

 

Thank God Mike understands the medicinal and spiritual battle I am in. He is so amazing even in his sick bed and that tends to make me feel even more like a self absorbed undeserving monster impatient and mean and trying not to be and blaming meds for my problems.

 

Thank you again for your replies- I am booked to see a psychologist but am a bit scared to unearth some truth I don't want to face  - so am not keen to talk what weren't problems at all before the adverse reaction and wd into existence. I don't really think I am depressed and when I get windows it all seems like none of it is even a problem at all. So reluctant to talk about problems that maybe I need to just reframe and diffuse. 

 

God Bless 🙏

[Onmyway]

@extraordinary what you are experiencing is called relationship OCD or ROCD - it is a known thing, a type of OCD. The one thing that will help you is to face that fear - that you may indeed not love your partner. You will see that once you allow yourself to feel that things are going to be OK. The avoidance/suppression of the fear is what keeps it coming back. Please read Martin Seif's work. You need to help yourself. 

 

The fear is understandable but if you don't do anything about it, it is not going to change. You need to work at it. You need to accept that part of you that may have conflicting feelings about your partner - it is not the end of the world. 

 

OMW

[mstimc]

12 minutes ago, Onmyway said:

@extraordinary what you are experiencing is called relationship OCD or ROCD - it is a known thing, a type of OCD. The one thing that will help you is to face that fear - that you may indeed not love your partner. You will see that once you allow yourself to feel that things are going to be OK. The avoidance/suppression of the fear is what keeps it coming back. Please read Martin Seif's work. You need to help yourself. 

 

The fear is understandable but if you don't do anything about it, it is not going to change. You need to work at it. You need to accept that part of you that may have conflicting feelings about your partner - it is not the end of the world. 

 

OMW

@extraordinary, OnMyWay is so right!  ERP, or Exposure Reaction Prevention, is a great coping tool for what you're feeling.  You need to use rational thinking practices to help you deal with irrational thoughts. One tool is Doing What You Came Here to Do.  When you start thinking you'll never go back to the hospital to help Mike, or won't be able to help him, remind yourself what you intend to do--what your rational mind wants to do, which is to be there for him and help him. Create some affirmations, like "I cam here to sit with Mike and help with his recovery, and that's what I'll do. All the negative thoughts won't stop me." Just keep saying your affirmations n your head until the negative thoughts start to fade.  Its not instantaneous; as OnMyWay said, it takes practice, but you can do it. 

[extraordinary]

Thank you- yes I realise it's ocd and intrusive thoughts but it seems about my whole existence - my personality and all the things I love.  Completely unhappy doing anything that used to make me happy.  I am focused on Michael though because he matters most.  Truly never questioned what I chose or loved in my life before the adverse reaction to lamotragine. I think the source of grief is loss of self. I appreciate though that the rocd is now becoming the focus of my fears  - maybe because I am most distressed about feeling nothing in my relationship compared to feeling nothing about anything else that mattered - reading,  faith,  nature,  exercise,  hygiene, clothing, fashion, travel, adventure the UK and my career and life all of which I was so happy and grateful for though admittedly I was happiest and most grateful about Mike and I am and the life we created and chose.

Thank you for the reading material  - I know we all have to find our own way through through this. I am normally very proactive and creative and did a lot of work previously with visualisation and neroplasticity- felt like I could always work through things. The sadness and anger and anhedonia is just crushing at present. Learning all the time and doing better some days. 

[extraordinary]

Thank you so much again mstimc.  I will apply that tool! I recognise being fearful is never a fruitful place or a true one. I am normally so much more positive. Again  - thank you for your kindness and support 🙏

[extraordinary]

9pm 12.5 temazepam

5am woke feeling flat took 2.5 temazepam to make up normal dose

8am Woke aware thinking angry grudging thoughts and irritable with intrusive thoughts 

8.30am drank coffee ate breakfast
10 a.m head and eye pressure low impatient uncaring mood and intrusive negative thoughts. 

Morning- same low mood scared to decide whether to go home from the hospital and get some things. Felt if I left I didn't care and if I didn't I was pathetic 

1.00 Ate lunch

afternoon- low mood reluctant to be caring

4pm - went for ct scan with Mike- he was in terrible pain I experienced deep anhedonia followed by neuro fear and overwhelm
5pm went for a walk about 20 minutes 
6 p.m. Ate dinner

6.30 tremors and shaking for about an hour  - moments of deep emotional pain feeling - both resolved by mid evening and mood settled and lifted a bit 
9pm took 12.5 temazepam and paracetamol wen- felt shivery
11pm took 2.5 temazepam fell asleep woke up twice in the night but basically slept well 

[Altostrata]

I am confused. What is your temazepam dosing schedule?

 

Please continue to post daily notes.

[extraordinary]

I am taking 15mg about 9pm most nights  - usually I take 12.5 first and if still awake in an hour or more take final 2.5. Sometimes if I sleep on lesser dose I take the 2.5 in the night if I wake or early morning or not at all. I think I noticed taking the reduced dose gave a worse day but when I took the full dose I seemed to still be as bad so wondering if just stress causing a wave and not the drug but confused if either are to blame.

 

8am woke feeling ok

8.30 coffee and breakfast felt ok through to 10 - 10.30
10.30 drove home a bit fearful but ok

11am went for a walk 30min

11.30 low mood and overwhelmed- scared I couldn't shower had difficulty deciding what to wear felt close to a meltdown and then scared about going back to the hospital

12.30 overwhelmed on arrival at the hospital 

1.00 detached and angry felt like could not cope with the sadness and agitation and pressure of feeling so unhappy and irritable - felt I couldn't speak or look at anyone extreme eye tiredness and fatigue

1.30 felt calmer just tired thoughts settled more easily communicative and animated 

2.00 had a coffee with Mike and talked 

3.00 low again crying because I missed Mike so much and scared I don't care or won't be able to cope with all the stress

4.00 calmer but sad felt better after looking at photos of happier times on our travels  - reminder of who I am 
6 p.m. made myself eat dinner
9pm 12.5 temazepam and paracetamol Fell asleep
 

[extraordinary]

Also diahrea through day and reflux late afternoon along with anxiety symptoms 

[Shep]

4 hours ago, extraordinary said:

I am taking 15mg about 9pm most nights  - usually I take 12.5 first and if still awake in an hour or more take final 2.5. Sometimes if I sleep on lesser dose I take the 2.5 in the night if I wake or early morning or not at all. I think I noticed taking the reduced dose gave a worse day but when I took the full dose I seemed to still be as bad so wondering if just stress causing a wave and not the drug but confused if either are to blame.

 

It's best to take all your drugs at the same scheduled time every day. Erratic dosing makes it impossible to know if a symptom is stress, a wave that would have occurred anyway, or the fluctuations  in dose of a drug that's being taken erratically.

 

I would pick a set time or times of the day to take the temazepam and only take it then. See if that helps over the coming days / weeks to get your nervous system to stabilize. 

 

With so much other stuff going on, having your drugs set at a specific time can help with your overall stability no matter what other stressors are occurring. 

[extraordinary]

Ok - thank you.  I rather naively thought a quarter dose wouldn't matter. Do you think dropping to 12.5 and staying there consistently would be bad at present?

[Shep]

Just now, extraordinary said:

Ok - thank you.  I rather naively thought a quarter dose wouldn't matter. Do you think dropping to 12.5 and staying there consistently would be bad at present?

 

Did you happen to write down how much temazepam you've taken every day for the past 2 weeks or so? The reason I'm asking is to see if you can tell what dose would be best. If you've consistently been taking more than 12.5 mg in total most days over the past couple of weeks, it's possible you've developed a dependency on a higher dose, so some of your symptoms on the days you take less may in fact be withdrawal symptoms or paradoxical reactions (meaning your nervous system starts "alerting" instead of "calming" the way sedatives are intended to work). 

 

If you don't know the doses you've taken over the past couple of weeks, it's okay. Just pick what you think will be the easiest for you to manage your symptoms and get enough sleep. Even if you need a bit more than the 12.5 mg, that's okay. The important thing is to pick a set dose and time and stay there long enough to develop a strong baseline. Think in terms of weeks or months, not days. 

 

Trying to get sleep while keeping your husband company in a hospital is very stressful, so it's understandable that your sleep will suffer. So now isn't the time to think about tapering, but rather, stability and becoming consistent and working toward that solid baseline. 

 

Are you able to listen to guided sleep meditations on YouTube on your phone while you're staying overnight at the hospital? That may help instead of taking additional temazepam. 

 

 

[extraordinary]

Thank you so much again Shep. Every day except one (2 days ago when I took 12.5 and seemed to get a bad day) for the past 2 weeks I have taken 15mg though usually as I say it's 8-9pm 12.5 and then the 2.5 about an hour later. I can not do that if it's problematic.

 

I will maybe just stick to 15 for now - i did stick with 15 for a month in Scotland in June and felt I was getting a couple of windows but I have been worse again despite being on the same dose since the return to Australia the change of brands of temazepam and Mike starting treatment. I think maybe the brand change was the main culprit but just guessing based on very similar symptoms as when I had to change brands in the UK in late March.

 

All just to say that holding the same dose hasn't helped for various reasons since beginning of this month. I want to get off the temazepam as I am always wondering if it's still causing some adverse reaction but don't want to rock the boat if symptoms aren't related

 

Yes I have tried sleep meditations but find sermons on unrelated topics or hallmark movies just as effective.  

 

Thank you again 

 

 

 

[Shep]

On 7/25/2023 at 6:59 PM, extraordinary said:

9pm took 12.5 temazepam and paracetamol wen- felt shivery
11pm took 2.5 temazepam fell asleep woke up twice in the night but basically slept well 

 

On 7/26/2023 at 2:03 AM, extraordinary said:

8am woke feeling ok

 

On 7/26/2023 at 2:03 AM, extraordinary said:

9pm 12.5 temazepam and paracetamol Fell asleep

 

Please note the above quotes from the two posts with drug and symptom notes you've posted so far. 

 

21 hours ago, extraordinary said:

I want to get off the temazepam as I am always wondering if it's still causing some adverse reaction but don't want to rock the boat if symptoms aren't related

 

After reading your notes, I don't see an adverse reaction. You wrote after one awakening and taking more of this drug, you "basically slept well."  And you wrote you woke up "feeling ok."

 

And last night (7/26/2023), you took the drug and fell asleep. 

 

It's possible you may be getting interdose withdrawal, as your symptoms get worse later in the day. Part of that may be catastrophic thinking as you deal with your husband's illness and the stress of being a caretaker. So it will be good to see more notes. Please don't make any changes right now. It's really important that we get a few days notes in a row with you taking the same dose at the same time of the day.

 

Questions: How do you feel right before you take the evening temazepam?

                        How do you feel 30 minutes later? 

[extraordinary]

Thank you so much again Shep. I  won't change anything dose wise and will post daily symptoms again tomorrow.

In answer to your question I mostly feel symptoms calm in the evening leading up to my dose. There have been some days when I feel fearful or agitated going to bed but that is not usual and has often been connected to a change of medication brand or my menstrual cycle. I usually feel similar but a bit relaxed after dose and fall asleep within an hour or so.

 

Just an additional question - I saw my GP today and she is wondering if my symptoms are being exacerbated by hormones given I am 51. She prescribed an estrogen gel. I am honestly afraid to try anything given I seem to react so negatively to any medication. I have avoided supplements as even vitamin c and d and magnesium seemed to have a negative result. Do you know if estrogen supplements have caused problems for people in wd or with severe adverse reactions. 

Many thanks 

[Shep]

41 minutes ago, extraordinary said:

In answer to your question I mostly feel symptoms calm in the evening leading up to my dose. There have been some days when I feel fearful or agitated going to bed but that is not usual and has often been connected to a change of medication brand or my menstrual cycle. I usually feel similar but a bit relaxed after dose and fall asleep within an hour or so.

 

Thanks for this description of your symptoms before and after you take your dose. It doesn't sound like you have interdose withdrawal. And it's good you're able to connect it to the change of medication brand and your cycle.

 

I would keep the dose the same and keep posting notes. Hopefully things will even out soon. 

 

42 minutes ago, extraordinary said:

Just an additional question - I saw my GP today and she is wondering if my symptoms are being exacerbated by hormones given I am 51. She prescribed an estrogen gel. I am honestly afraid to try anything given I seem to react so negatively to any medication. I have avoided supplements as even vitamin c and d and magnesium seemed to have a negative result. Do you know if estrogen supplements have caused problems for people in wd or with severe adverse reactions. 

 

Women have mixed results with this, along with mixed thoughts on even trying to add in hormones during their tapers.  You may want to read this thread:

 

PMS, PMDD, and menstrual cycle issues during withdrawal and after

 

Many psych drugs are hormonal disruptors, so they can cause all sorts of problems. I went through menopause over the past year and found the Keto and Paleo diets, along with exercise, to be the most helpful for navigating through it; however, I'm 8 years off these drugs and well into the recovery phase, so my journey is different. You may want to seek out a medical professional who's holistic in their treatments to see if there are ways to avoid adding in hormones if that's not something you feel comfortable doing. I wish more doctors understood psychiatric drug withdrawal and there was more research into this, but western medical is really lacking, especially in women's health. 

 

Also, if your diet isn't good, you may be deficient in vitamins, such as B12, and if you're not able to get out in the sun every day, you may be deficient in D3. So it's important to make sure you (and your doctor) are not conflating symptoms of vitamin deficiencies with hormone deficiency and when you're getting checked out by a doctor, also include testing for these. Please don't add in a bunch of supplements at once, though, as that can also cause problems. Here is some guidance on that:

 

Important topics about tests, supplements, treatments, diet

 

As you have time and energy, you may want to scroll through that thread and research any vitamins you think may be helpful or harmful. Please don't add in anything just yet, though, because we're still trying to sort out your current set of drug and symptoms notes. 

 

You mentioned avoiding supplements, which is completely understandable. We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

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

 

Magnesium, nature's calcium channel blocker

 

You mention having problems with magnesium, but if you feel that your dose was too high, you may want to try a much lower dose and space it out throughout the day. Or you could try a small amount of Epsom Salts in a bath, which is a milder way of getting magnesium absorbed through the skin. 

 

While you're holding everything steady and posting your drug and symptoms journal over the coming days, you may want to read over these links for things you may wish to add in later. And here is one more link, which provides guidance in how to add in supplements or make drug changes, doing so mindfully and intentionally, one change at a time:

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

[extraordinary]

Thank you for such a thoughtful reply Shep and for your time and understanding. I have read a bit on the site about PMS and menopausal symptoms but it seems such an individual thing re results. 

 

My friend suffered with some mood issues and recommended Femular supplements which she says are natural and helped a lot along with vitamin d and magnesium. I have had My bloods checked and the only lows were iron and vitamin d. I have had an iron infusion and was taking a vitamin d supplement until the adverse reaction to lamotragine and Zoloft and 3 day withdrawal from mirtazapine in December but haven't been able to tolerate anything since. 

 

I think I will keep things the same for now as you suggest - still thinking that while symptoms aren't necessarily helped or aren't exacerbated by the temazepam doses they are basically due to the total meltdown in December - only 6 months ago so not surprising it's still not going well. 

 

I'll post daily notes at end day. 

Thank you again 

[extraordinary]

Should say are exacerbated by the temazepam doses