Victoria94: polydrugged and desperate - don't know what to do

[PortugueseSea]

17 hours ago, Victoria94 said:

Thankyou so much for your kind words. Honestly this feels like the most defining moment of both our lives. 

It is the defining moment in mine too. And I have a supportive family. Though my wife struggles to understand. So if I can I'd like to help and connect with others.

 

17 hours ago, Victoria94 said:

I have been thinking the same about the Mirtazapine. My instinct about taper is Ashton method is viable due to the duration my partner has been on valium vis a vis a 10% reduction duration. It seems a longer amount of time on this could be more damaging than a 1/2 week reduction. I remain cautious.

From what I have read about benzos, as long as you are not on them super long term and taper slowly you will be fine. In Tyler's case because she has you she will certainly be. I think when she is this acute stabilizing is the priority, and preventing further drugs being added into the mix. I say this but I would just like to get completely off yesterday. I have tried to evaluate whether the Mirtazapine is harming me and, as of now, I don't think it is. It is still uncomfortable though and my symptoms are often very bad.

 

17 hours ago, Victoria94 said:

hey have blind faith in "professionals", have no understanding of pharmacology or medicine and I think they see me as dangerous for doing my own research and utilising resources like this.

 

As for resources you can use to negotiate your way with her family, look for David Healy, Cochrane research, Mad in America and that Danish dude who was with Cochrane before and I can't remember his name.

I will be here to see you through your cross as I have mine on my shoulders to bear.

I will pray for Victoria and for you.

Edited September 23, 2022 by Karma
Name update

[Altostrata]

Is @Victoria94 taking 4mg diazepam per day now? I had suggested reducing ONLY the morning dose to 2mg.

 

On 9/20/2022 at 4:18 PM, Victoria94 said:

Also, how would you proceed with taper? Are you basing it off the logs?

 

Yes.

 

@Victoria94 seems to have quite a dramatic personality.

 

Edited September 23, 2022 by Karma
Name update

[Victoria94]

2 hours ago, Altostrata said:

Is @Victoria94 taking 4mg diazepam per day now? I had suggested reducing ONLY the morning dose to 2mg.

 

 

Yes.

 

@Victoria94 seems to have quite a dramatic personality.

 

 

She is dramatic sometimes yes always has been 😂. We can laugh about some of the things during her windows. I'll try to remove any hyperbole.
 

4mg diazepam total is the new dose. I did ask for clarification on Ashton. I thought you were making another typo. 

 

Thanks

[Altostrata]

[Victoria94]

17 hours ago, Altostrata said:

I don't need convincing Alto. They do. "this paper isn't science it is an anecdote" 🤦‍♂️

 

22/09/2022

7:00 restless still cannot stay still
7:30 valium 2mg
9:00 burning sensation in legs not as bad as before, emotionally numb, anxious, depressed
10:00 feel the need to move my legs and body, mental symptoms not as bad
11:00 agitated
12:00 depressed, thought loops, suicidal thoughts
15:00 eat 
16:00 suicidal rumination continues
18:30 feel anger 
19:30 valium 2mg
20:00 still feel really angry not sure why
21:00 eat
22:30 mirtazapine 3.75mg, symptoms calming down as usual
00:00 sleep
01:00 wake up
02:00 restless legs, suicidal thoughts
03:00 continues
05:00 restless legs, stop
05:30 randomly spring out of bed and start pacing
06:00 mental anguish, hit my face partner holding me down, everything everyone ever said to me that's negative playing over and over

 

[Altostrata]

@Victoria94 may or may not have to put up with a bumpy symptom pattern because of the rather large 2mg/day reduction in diazepam. This will take a couple of weeks to smooth out.

 

No need to report daily symptom pattern for the next 2 weeks unless something unusual happens.

 

You will need to urge her to stay as calm as possible and stop dramatizing, she's winding herself up unnecessarily. We can't help with problems people make for themselves.

 

 

[Victoria94]

4 minutes ago, Altostrata said:

@Victoria94 may or may not have to put up with a bumpy symptom pattern because of the rather large 2mg/day reduction in diazepam. This will take a couple of weeks to smooth out.

 

No need to report daily symptom pattern for the next 2 weeks unless something unusual happens.

 

You will need to urge her to stay as calm as possible and stop dramatizing, she's winding herself up unnecessarily. We can't help with problems people make for themselves.

 

 

@Altostrata  Her symptoms have ramped up significantly coinciding with the 1mg drop in dose starting to kick in. The pacing is new to me. And especially what I called the bouts of "x" before. 

 

Can you please give me an example so I can just tell her? She doesn't understand.
 

[Altostrata]

From what I can see, yesterday's symptom pattern shows a reduction in intensity of symptoms. Which symptoms got worse? Did they get truly worse, or is @Victoria94 resistant to reducing Valium?

 

She did not reduce by 1mg per day, she reduced by 2mg per day. I had suggested reducing only the morning dose:

 

On 9/18/2022 at 5:13 PM, Altostrata said:

....

I suggest @Victoria94 reduce the 12:30 p.m. dose to 2mg Valium.

....

 

[Victoria94]

32 minutes ago, Altostrata said:

From what I can see, yesterday's symptom pattern shows a reduction in intensity of symptoms. Which symptoms got worse? Did they get truly worse, or is @Victoria94 resistant to reducing Valium?

 

She did not reduce by 1mg per day, she reduced by 2mg per day. I had suggested reducing only the morning dose:

 

 

 

She reduced from 5mg to 4mg per day. She has gone from 2.5mg at 7:30am/7:30pm for a TOTAL of 5mg. To 7:30am and 2mg 7:30pm for a TOTAL of 4mg. Please check the notes I'm very confused. What 12:30pm dose?

Todays notes will be alot different (23/09/22), there is a lag between when I'm posting.

Today (23/09/22) she reported visual disturbances around 2pm that lasted 10 mins. Lights in her vision.

My main concern was the bouts of "x" were far more exaggerated in intensity and duration and pinning her down was alot more difficult. They peaked and valleyed all morning from 5am to 10. Came back around midday went at 01pm. And started again this evening for around 2 hours. She's also not remembering the bouts properly. Again, the pacing is new to me and so is her springing up out of the chair. She is in alot of mental/physical discomfort.

No she wants to get off all the drugs asap. She wants to taper faster than you're suggesting which I am urging against. Please state whatever it is you're thinking clearly to me so I can clear up any misconceptions you have. 

[Altostrata]

Signature says 

Quote

August 29th - Mirtazapine 3.75mg, 6mg valium

 

At what point did @Victoria94 reduce to 5mg?

[Victoria94]

September 1st - Mirtazapine 3.75mg, 5mg valium 

[Altostrata]

Overall, is she feeling better or worse on 4mg per day as compared to 5mg per day?

[Victoria94]

Worse.

[Victoria94]

Are we overlooking the mirtazapine? 

[Altostrata]

In what ways is she worse?

 

I can't tell a damn thing without daily notes.

[Victoria94]

1 hour ago, Altostrata said:

In what ways is she worse?

 

I can't tell a damn thing without daily notes.

 

There is a 24 hour lag when I'm posting.
Yesterdays:
23/09/2022

07:00 bout of "x", shaking all over body, mental anguish, terror, feel suicidal, partner holds me down
07:30 2mg Valium
08:00 still really shakey
09:00 bout of "x" pacing around flat from restlessness, "want to get out of my head and skin", get pinned down but trashing around from mental and physical discomfort, begging partner to end my life to make it stop
10:00 restlessness, crying, mental anguish
10:20 bout of "x" occurs, mental anguish, can't stop moving
11:20 "x" continues, thrashing, trying to get up randomly, partner pins me down trying to scratch my skin, screaming, telling partner I want to die
12:00 bout of "x" calming down, restless legs
12:25 calmer, burning sensation in legs and arms, when I close my eyes I can see warped faces
12:45 popping sensation in my head
13:30 restless legs, thought loops, rumination
14:30 restless legs, thought loops, rumination
15:00 visual disturbance - lights in my vision
15:05 passes

16:00 eat a meal
18:00 very mentally distressed, agitated, anxious
19:00 continues
19:30 2mg Valium
20:00 crying, suicidal thoughts
22:30 3.75 mirtazapine
23:00 feel blank
00:00 continues
01:00 go to bed, sleep

02:30 wake up, shaking
03:00 restless legs, suicidal thoughts, thought loops
06:00 restless legs, suicidal thoughts, thought loops

 

Today (24/09/2022) she is alot better. The "activation" seems much less intense and she had a window of 3 hours. Correlates with the drop in dose on the 19th? I can post the notes tomorrow if you'd like. Or give you what looks like a much needed break and just check in if anything unusual happens. However long you'd like.
 
Thanks Alto. 

 

 

 

 

[PortugueseSea]

6 hours ago, Victoria94 said:

Today (24/09/2022) she is alot better. The "activation" seems much less intense and she had a window of 3 hours.

Windows are absolute gold, remind her of them whenever she's desperate. That's what I do to myself. I scrupulously note any times without activation/agitation/akathisia so I can look back and find comfort when things are bad.

 

Praying for you guys;

 

[Victoria94]

3 hours ago, PortugueseSea said:

Windows are absolute gold, remind her of them whenever she's desperate. That's what I do to myself. I scrupulously note any times without activation/agitation/akathisia so I can look back and find comfort when things are bad.

 

Praying for you guys;

 

My partner said thank you so much. Shes had a bad morning and this really helped distract her for a minute

[Victoria94]

24/09/2022

06:00 depressed, suicidal rumination
07:00 restless, thought loops
07:30 valium 2mg
10:00 minor bout of "x", passes quickly
11:20 intense bout of "x", thrashing, trying to get up, trying to scratch my skin, partner pins me down
12:00 bout of "x" calming down, restless legs
12:25 calmer, burning sensation in legs and arms, when I close my I get flashes eyes I can see warped faces
12:45 popping sensation in my head
13:30 restless legs
15:00 bout of "x, thrashing, mental anguish, 
15:30 calmed down, restless
16:00 eat a sandwich 
19:00 negative thought loops slowing down
19:30 valium 2mg
20:30: window, thought loops, suicidal rumination are gone
22:00 window continues, suicidal rumination there but its quiet
22:30 3.75mg mirtazapine
23:00 slightly restless legs
00:00 able to concentrate on a book
01:00 sleep
05:00 wake up, depressed, suicidal rumination 
06:00 continues

[Altostrata]

18 hours ago, Victoria94 said:

Correlates with the drop in dose on the 19th?

 

Possibly. If this is so, her adverse symptoms will continue to get milder.

 

Please continue to post daily notes.

[PortugueseSea]

9 hours ago, Victoria94 said:

able to concentrate on a book

Might seem minor but I think it’s huge; it’s a sign of stabilization. Hopefully, we will see more of this.

 

Sleep isn’t too broken either, 4 hours is a start…

 

I love reading but books are still a bridge too far for me.

 

 

[Victoria94]

25/09/2022

06:15 depressed, suicidal rumination

06:30 wired
06:50 bout of "x", intense, thrashing around  restless legs
07:15 bout of "x" involuntary thrashing, strong compulsion to kill myself to end the mental anguish partner pins me down, feels like head will explode, trying to catch my breathe
07:45 take Valium 2mg
08:00 still in and out of "x",
09:35 bout of "x" increases in intensity -trembling all over followed by thrashing, excruciating pain in my head, horrible images when i close my eyes, beg partner to let me end my life
09:00 "x" continues on and off
11:00 "x" stops, feel blank
12:00 "x" starts again, involuntary thrashing, want to tear of skin, excruciating pain in head, want to die, off and on for 3 hours
15:35 "x" turns into headache, exhausted
16:00 headache continues
17:07 depressed, suicidal rumination
19:30 Valium 2mg headache continues 
20:00 depressed, suicidal rumination, headache stops
21:00 eat
22:30 mirtazapine 3.75mg
23:00 no restless legs this time, just depression, exhausted from being stuck in and out of bouts of "x" all morning
01:00 bed

03:00 suicidal thoughts, rumination

04:00 sleep

04:30 wake up, restless, suicidal thoughts, rumination

06:00 increasingly restless, agitated

 

Alto, I managed to catch her thoughts this morning (26/09/2022) before the akathisia like symptoms took over. When her restless legs would start I would ask which thought is bothering her. We would talk it through, the restless legs would calm down. I left the room at another point, and she was highly agitated when I returned, kicking her legs. I asked which thought is bothering her - she said six thoughts really fast. I told her she was safe, asked her to focus on her breath which calmed her down, and asked which thought was bothering her. She then named one thought, and we talked it through - the kicking legs became restless legs and calmed down again. @PortugueseSea I don't know if this technique may help you.

 

It's like a cog that is already spinning too fast. The thoughts being another cog driving it. The faster they both spin, the more pain that is experienced. 

 

 I am honestly blown away by how painful it is for people to go through this when it's reaches overdrive. 

Should be easier to gauge the activation now. (26/09/2022) notes to follow tomorrow.

 

Thanks, Alto. 

[Victoria94]

@Altostrata

 

My partners parents have consulted a gp who has said my partners activation symptoms are purely psychosomatic as the valium dose is too low. They also did not accept the valium is causing activation. They have taken control of her taper and are dropping her down today to 

 

1 week of 4mg/2mg/4mg/2mg

1 week of 2mg 

And then to stop

 

They are not happy that I have been consulting you and think it has inflammed the psychosomatic symptoms. Is she at risk of protracted withdrawal? Can I please relay a message to them from you? 

 

 

[Victoria94]

@Altostrata

 

My partners parents have consulted a gp who has said my partners activation symptoms are purely psychosomatic as the valium dose is too low. They have taken control of her taper and are dropping her down today to 

 

1 week of 4mg/2mg/4mg/2mg

1 week of 2mg 

And then to stop

 

They are not happy that I have been consulting you and think it has exacerbated the psychosomatic symptoms. Can I please relay a message to them from you?

[Victoria94]

@Altostrata the other thing is that according to them the logs are inflamming the psychosomatic symptoms. I'll let you know if I cannot continue posting 

 

 

26/10/22

05:00am wake up, depression, suicidal ideation
06:00 very wired, restless legs
07:00 agitated, suicidal ideation, legs kicking, ground technique stopped it getting out of control
07:30 valium 2mg
08:30 still asking same questions over, might be from amnesia combined with agitated
10:30 eat eggs on toast
14:00 anxious, manage to go for a walk and get on the underground to get a train to parents
15:13 see really disturbing images when I close my eyes
16:00 depressed, memory is really bad, anxious
18:10 manage laughter, Amnesia
18:40 agitation, restless
19:30 valium 2mg
20:00 restless
20:36 tinnitus
21:25 headache
20:30 mirtazapine 3.75mg
23:00 angry agitated
03:00 wake up, ruminating, depressed
06:00 get up, anxious, depressed

[Victoria94]

4 hours ago, Victoria94 said:

@Altostrata the other thing is that according to them the logs are inflamming the psychosomatic symptoms. I'll let you know if I cannot continue posting 

 

 

26/10/22

05:00am wake up, depression, suicidal ideation
06:00 very wired, restless legs
07:00 agitated, suicidal ideation, legs kicking, ground technique stopped it getting out of control
07:30 valium 2mg
08:30 still asking same questions over, might be from amnesia combined with agitated
10:30 eat eggs on toast
14:00 anxious, manage to go for a walk and get on the underground to get a train to parents
15:13 see really disturbing images when I close my eyes
16:00 depressed, memory is really bad, anxious
18:10 manage laughter, Amnesia
18:40 agitation, restless
19:30 valium 2mg
20:00 restless
20:36 tinnitus
21:25 headache
20:30 mirtazapine 3.75mg
23:00 angry agitated
03:00 wake up, ruminating, depressed
06:00 get up, anxious, depressed

Mirtazapine was at 22:30 

 

Sorry I wasn't able to take the notes myself

[PortugueseSea]

They think it's psychosomatic based on what? Certainly not on meeting the patient and doing a careful history.
Alternating doses is NOT recommended in any circumstances. The same for large reductions like that. 

Also, even if it was true this was all or mostly psychosomatic I can't see how a rapid reduction of benzodiazepine dosage can make things better in any way whatsoever. 

I hope Alto can provide you with the resources you need. That rapid drop seems reckless and likely to lead to polypharmacy and/or additional diagnoses when she subsequently gets worse.

She ought to stabilize given time, though I doubt her rx will remain only mirtazapine if her symptoms skyrocket.

Praying for you guys.

[Altostrata]

I'm not able to tell a GP what to do. Is @Victoria94 a minor? Why are her parents determining her medical care? If she's an adult, she can refuse the GP's instructions if she wishes. It appears she has chosen to follow the doctor's advice, we can't do anything about that, either.

[Victoria94]

@Altostrata

 

I'm not asking you to tell anyone what to do. As I told you my partner isn't always capable of understanding this is drug induced. She's 30 years old. And was NOT like this before. Since the serotonin syndrome they've been telling her its in her head. Because they encouraged the drugs in the first place and told her to stick itnout. I just want a paragraph on what you think is happening. And a rebuttal to the gps argument.

 

Please Alto I'm so scared for her. She's so close to getting off these drugs. They will have her back on. I'm so close to getting her off.

[Altostrata]

You're able to intercede with her GP? It's very difficult to convince them they're wrong about adverse drug effects, they don't know what they're doing. It's much more effective for Victoria94 to use her rights as a patient and say "no thank you" to both the GP and her parents. 

 

Her extreme theatricality probably convinced her parents they had to do something. One way to keep parents out of your business is not to complain to them so they feel they need to take charge.

 

See 

 

[Victoria94]

Amazing. Thanks, Alto.

[PortugueseSea]

Any updates?

 

Your silence is making me worry; praying for healing.

[Victoria94]

Hi @Altostrata

Just an update followed by some questions. 

Sadly my partner went through with the 1mg per week taper. She approaches 4 weeks off everything tomorrow. I have seen no signs of improvement.

 

Since then she has had a host of symptoms that seem typical to withdrawal for me. Numbness in skin, suicidal ideation, popping sensations in head, agitation, emotional blunting, 1-2 hours of sleep. But the most concerning is the paranoia. 

I have noticed it comes in waves. Or can be triggered by stressful interactions. But when it peaks it can manifest itself quite scarily.  To the point where she is convinced that her friends and I have turned against her and will not talk to anybody. Deleting old conversations incase anyone finds them. And will ask me to show her there isn't anyone in the room when I speak to her via video call. Is this normal? 

 

I also learned that she had been given a street benzodiazepine in the form of a pill press at the beginning when adjusting to the sertraline at 50mg. What affect may this have had? 

At the moment. It's hard for her to self soothe. Because her family think she is faking alot of her symptoms or that they are psychosomatic. They don't believe her psychiatrist told her she had serotonin syndrome either. Essentially they have convinced her this is not a reaction from the drugs. When we were tapering her, for the most part she still believed it was the drugs that caused this. 

 

They have spoken to numerous GP's since. She has declined quetiapine despite them persuading to so far. Which I think is a good sign?

 

Any clarification would be appreciated. Thanks.



 

[Altostrata]

It's very hard for us to provide peer support for a second party. Your partner is an adult and has accepted whatever it is she's taking. I have no idea what she was taking as a "street benzodiazpine" and cannot comment on what effect it might have.

 

As you describe it, it sounds like she might not have control over her thoughts and actions. She is also strongly controlled by her family. As Internet peer support, we cannot intercede with her family or medical provider.

[PortugueseSea]

I think it is very noble of you to keep battling for her. 

As for the "fast tapers" aka CTs, what is done is done. It is good she is staying of Serokill as it would probably just compound her misery. 4 weeks off it is early days to see any improvement given she has just been stripped off multiple drugs.

Consider it a win for her not to be getting worse given the circumstances, let us hope that her body gets used to being off meds sooner rather than later. After that, you will hopefully start seeing improvements.

Praying for you guys,

 

[Victoria94]

21 hours ago, PortugueseSea said:

I think it is very noble of you to keep battling for her. 

As for the "fast tapers" aka CTs, what is done is done. It is good she is staying of Serokill as it would probably just compound her misery. 4 weeks off it is early days to see any improvement given she has just been stripped off multiple drugs.

Consider it a win for her not to be getting worse given the circumstances, let us hope that her body gets used to being off meds sooner rather than later. After that, you will hopefully start seeing improvements.

Praying for you guys,

 

 

Thanks for your input and kind words @PortugueseSea it's very much appreciated during these dark times.

I spoke to her yesterday, she seems to be coming out of the wave. She is aware she is paranoid, so her rational mind is still there. I suppose all I can do is hope and pray.

I've made another appointment with Baylissa for her. Hopefully her family let her attend.

I hope your symptoms have been abating somewhat since we last spoke. Praying for you also.