Kathrine: Respiratory depression (?) and coming off Sertraline, Vyvanse and Seroquel

[Kathrine]

I came off 50 mg Sertraline almost from one day to the next. Then threw away Vyvanse from one day to the next. Now, I am trying to come off Seroquel, but I am struggling. Went to the hospital twice in the last couple of weeks because I have a severe lung infection, but the doctors cannot understand why my body won't take in enough oxygen for my oxygen saturation in the blood to be normal. I suggested that it might have to do with the fact that I JUST came off several kinds of meds that had a severe impact on my breathing (I was hyperventilating all day every day), but they just looked at me funny. But it does make sense to me that I am now "hypo ventilating" because my body is out of balance? Am I totally off here? Right now, I wish I could just find a doctor who could let me know whether it is dangerous to "hypo ventilate". I have to sons, and I don't want to die...

 

[LotusRising]

Hi @Kathrine

 

Welcome to SA,

 

Could you help us out by modifying your signature? We're looking for dates you started/stopped medication. Please see this link How to Create a Signature 

 

These two links will help you to understand withdrawal syndrome:

 

What is Withdrawal Syndrome?

 

Video on Recovery from Psych Drugs

 

2 hours ago, Kathrine said:

Went to the hospital twice in the last couple of weeks because I have a severe lung infection, but the doctors cannot understand why my body won't take in enough oxygen for my oxygen saturation in the blood to be normal.

I'm not sure I follow what's happening. You had a lung infection and this could make your oxygen saturation low. Did the penicillin treat the infection? What is your O2 saturation? I wonder if you could describe what the breathing issues feel like?

 

I've had many breathing issues throughout my WD, but my oxygen saturation was never low. It felt like it would be because my breathing was shallow and it was hard to take a deep breath - some call this air hunger - but tracking my O2 helped alleviate some of the anxiety around this. 

 

If this is a WD-related issue, you won't die. I know breathing difficulties are uncomfortable, but they should ease with time.

 

This thread might have some relatable info:

 

 

Please feel free to post any updates or questions related to your specific situation right here in your thread. It's helpful to keep everything related to your tapering journey in one spot. 

 

Once again, welcome

 

LotusRising

[Kathrine]

Thank you so much for your time @LotusRising and your comments. I have updated my signature. Sorry, I didn't get it the first time around. I'll have a deeper look at the thread and the links. Thanks again. I am so happy this site exists! 

[LotusRising]

On 3/10/2024 at 1:10 PM, Kathrine said:

I am so happy this site exists!

Ditto! It was a lifesaver for me!

[Kathrine]

Hi!
I'm not at native English speaker, so I don't know which terms to search for regarding the following, so I apologize if this topic has been described before.

I am tapering Quetiapine (Seroquel) right now (225 mg), but I find that I get withdraw symptoms (mood swings, crying, feeling like giving up on life etc.) every day around 2 pm and until maybe 8 og 9 pm. (Actually, I realize that I have had this downward spiriling thing every day as the dosis from the night before wears off for as long as I have been on Quetiapine). The half life of Quetiapine is around 6 hours, and I take it at 9 pm, so it makes sense to me that I get a reaction when there very little of the drug left in my blood in the afternoon and night. So, I was wondering if anyone else tried to "push forward" the dose and/or kinda cut the dose into parts so that you take a little bit of the drug around the clock. Does that make sense? 

Anyway, my plan is to try the following:

STEP 1:

I will take the 200 mg. as a pill in the night, and then micro dose the last 25 mg. (in water)

9 pm: I take nothing. I go to sleep (and yes, I can normally do that better than without the drug?! The drug "turns me off", it does not let me fall asleep naturally)
3 am: I set an alarm, and I take 200 mg. 
[half life: 6 h]
9 am: 100 mg. is left in the blood
3 pm: 50 mg. left in the blood

Around 3 pm or later, if I get my acute withdrawal symptoms, I will try and "micro dose" the last 25 mg. slowly to see if that helps with the symptoms. 

STEP 2:

If Step 1 works out, I think I will try and split the dose into 4 doses a day or more (every 6 h cf. half life of the drug), and then reduce all the doses a microscopic bit at the time. 

I can't figure out if this makes sense to anyone else but me, but I hope it does, and if it does: Has anyone tried something like this?


 

[Erimus]

Firstly, please read the topic on Tips for tapering off quetiapine (Seroquel) if you haven't already. Due to the very short half-life of quetiapine IR it is recommended to split your dose, as you have already worked out. Personally I would initially split the dose in to two parts, and slowly shift them until they are 12 hours apart. You can choose to splt into four further down the line if you find symptoms are still challenging.

 

For example, you split your dose of 225mg into two doses of 112.5mg and slowly move one of them by an hour every day or so. E.g. Day 1: 112.5mg 8pm & 112.5mg 9pm; Day 3: 112.5mg 7pm & 112.5mg 9pm; Day 5: 112.5mg 6pm & 112.5mg 9pm; until you reach: 112.5mg 9am & 112.5mg 9pm

 

After stabilising on the new dose regime you can then begin tapering by reducing each dose by small amounts. You can start by reducing both doses by 6.25mg, which can be made by cutting the 25mg tablets into quarters. So you would take: 9am 106.25mg & 9pm 106.25mg.

 

All the answers you are looking for regarding tapering and antidepressant withdrawal are on this site. Please search around and continue to read as much as you can manage. Use the site search function to search for specific words or phrases, such as drugs or symptoms.

 

Here are a few of the most useful links:

 

Micro tapering

 

Why taper by 10% of my dosage?

 

Taking multiple psych drugs? Which drug to taper first?

 

How to make a liquid from tablets or capsules

 

Using a scale to weigh and measure doses

 

We only recommend two supplements. Omega 3 Fish Oil and Magnesium. Both should be introduced separately and increased slowly.

 

Regards

Erimus

Edited March 22 by Erimus

[Kathrine]

Dear Erimus,
Thank you so much. I have read the links and used the search function a lot (but missed the part you are describing, sorry). I am so happy to hear that you can validate my experience (and sad that my psychiatrist never told me – I have been struggling for years). I will try to do what you describe as soon as I have the energy to do so. Only thing... am I not gonna feel tired and sleepy after taking it in the morning? 
Regards, 
Kathrine

[Erimus]

18 hours ago, Kathrine said:

Dear Erimus,
Thank you so much. I have read the links and used the search function a lot (but missed the part you are describing, sorry). I am so happy to hear that you can validate my experience (and sad that my psychiatrist never told me – I have been struggling for years). I will try to do what you describe as soon as I have the energy to do so. Only thing... am I not gonna feel tired and sleepy after taking it in the morning? 
Regards, 
Kathrine

You will have to monitor if it makes you sleepy.

[Erimus]

Please don't start multiple threads each time you have questions. Post everything in here.

[Kathrine]

I am so sorry! I don't know what I am doing wrong though. 😕 What should I click to do it correctly? Right now I am going below your answer in the box that says 'submit reply', but that is wrong? 

I will do my best to follow your guidelines! I promise.

I hope it is okay in the meantime to mention that I am going to reinstate 0,5 mg. of Sertraline, because I went almost cold turkey from 50/25 mg. back in January, and I have these waves of suicidal ideation and intense shame and panic that I can hardly counter. (I now realize that I have had this the other times I followed psychiatry's directions and went off Sertraline, and it went on for months). That doesn't seem safe. And yesterday I had to take a benzo to not run off in the middle of the night. It seems absolutely crazy today. I have two kids and a husband that I love SO much, so it is scaring me. Also, I had a strong reaction to altering the time I take my Quetiapine, so for now I am stabilizing that at 200 mg. at 9 pm and 25 mg. in water that I "microdose" during the late afternoon/evening when the crash from Quetiapine appears while I have to do all the dinner and getting kids to bed stuff... (Still can't believe I got an ADHD diagnosis for crashing in "family hours" when it is so obviously a Quetiapine crash 😧 ...) 

[Erimus]

On 3/24/2024 at 9:21 AM, Kathrine said:

I am so sorry! I don't know what I am doing wrong though. 😕 What should I click to do it correctly? Right now I am going below your answer in the box that says 'submit reply', but that is wrong?

That is fine. Just keep posting in the box at the bottom of this thread. Last time you managed to start a new thread in the "Tapering" forums. Don't worry about it.

 

On 3/24/2024 at 9:21 AM, Kathrine said:

Also, I had a strong reaction to altering the time I take my Quetiapine, so for now I am stabilizing that at 200 mg. at 9 pm and 25 mg. in water that I "microdose" during the late afternoon/evening when the crash from Quetiapine appears

Just keep doing what works best for you. Don't try to change the dose of quetiapine if you're reinstating sertraline. One thing at a time.

[Kathrine]

Thank you. I understand. 🙂

Now, I will keep doing what I am doing for a week and evaluate. So, 225 mg. Quetiapine and the I take 1 mg split into two times 0,5 mg. Sertraline - one in the morning, one in the afternoon. I am unfortunately already getting my Sertraline symptoms of serotenergic syndrome (shallow breath, heart beating faster, sweating) and my PGAD (which I absolutely hate!) back. But that has come with other psychopharmacological changes too, so I am hoping it will pass during the next couple of days. I am hoping to stabilize here, and then at some point continue the withdrawal of Quetiapine before I try and get rid of the rest of the Sertraline some time in the future. I have eaten SSRI for 20 years, and Quetiapine for "only" 8 or 10. Also, I figured out that the symptoms I thought were related to tapering Quetiapine is actually probably protracted withdrawal syndrome from a too fast/cold turkey "tapering" back in January. It makes sense, as the other times I have followed psychiatry's guidelines and quit almost cold turkey, I have had severe symptoms for months and months on end until I wounded up in a psychiatric ward and was prescribed ... Sertraline of course. 😞

Anyways, you don't have to respond. I will not change anything for now. I am just happy to put my thoughts down to help myself keep my cool and maybe help others in my situation one day...

By the way, I do have actual asthma now. Got an inhaler etc. I wonder if it was there all along under the antihistaminic effect of the Quetiapine, or if it is yet another withdrawal symptom that will pass. I am hoping for the later, but expecting the first. Also, no menses for months. But I don't expect to be able to figure it all out. I can live with both...

 

[Peter23]

So sorry to hear that you're going through such a rough time Katherine. I can empathise with your situation having been suffering from protracted antidepressant withdrawal for 6 years and now suffering from polypharmacy after several misdiagnosis and 5 months in a psychiatric ward. I'm sure one of the monitors can advise you about tapering. I really do hope things will improve for you. You are truly not alone. With very best wishes Peter 

[Kathrine]

Hi Peter

Thank you so much for taking the time to write me, and I am so sorry to hear that you are going through something similar. It just is not fair. Are you out of the psychiatric ward now? I hope so. ❤️ I hope things will improve for you too. Soon, but slowly. 🙂

The moderators have been great. I feel safe in here. 

 

[Kathrine]

On another note, I am wondering if my 1 mg. Sertraline will keep improving over the course of six weeks like they say the so-called "real doses" do? 

[Kathrine]

So, I am better, but I think I need to do a 1 mg - 0,5 mg - 1 mg - 0,5 mg taper-like thing, because my PGAD is back, and I am irritated/agitated. Frustrating... Just afraid anxiety will set in big time, if I go down a bit again. Feel kinda stuck here, but I guess I just have to keep trying. 

[Kathrine]

Oh, this is too tough. I went out last night, had a bit of wine and got hardly any sleep last night. Now, I am stuck in anxiety, panic, shame – so much relentless shame rumination in my head – and suicidal ideation. It is too much...

[Erimus]

3 hours ago, Kathrine said:

Oh, this is too tough. I went out last night, had a bit of wine and got hardly any sleep last night. Now, I am stuck in anxiety, panic, shame – so much relentless shame rumination in my head – and suicidal ideation. It is too much...

Avoid alcohol indefinitely. It's a disaster waiting to happen.

Edited April 4 by Erimus

[Kathrine]

Okay, thank you! I will. (I felt fine with just something like 4 spoon full at night during easter, but come to think of it I did feel a bit unstable the following day... I'll avoid it for now. 

[Kathrine]

On another note, I have these 'holes' in my memory – e.g. when I am trying to write down the chronology of my time in psychiatry (for my new psychiatrist that I have an appointment with in February 2025), but also in other areas. It is like my brain just kinda sets out (which feels weird when the rest of the time, my head is over-agitated, over-thinking, over-concerned...), and there's just nothing there, and I cannot remember stuff long enough to put it into words. I wonder, if my memory and ability to focus will come back to me – if it is a WD symptom, something "underlying" my meds, or a new state. I've tried searching the forum and it seems other people mostly experience this when they are ON the drug... Anyways, I am joining an ACA group next week hoping to be able to remember my life's story if I have someone to share my traumas with (current trauma is my years in psychiatry, but the reason I ended up there was trauma brought about by my family of origin, so it is all kinda adding to this experience of coming off of psychotropic drugs). I am hoping!

[Kathrine]

I feel stuck. A couple of months ago, I came off the last 1 mg, because my agitation, uncomfort og the feeling of not being able to be in my own body was too much. As I let go of the last 1 mg (and yes, I should've tapered from there), I felt SOOO good. The best days of my grown up life, I think. But then, after a few weeks of course the withdrawal syndrome kicked in, and I was in panic, suicidal, anxiety and unable to gather my thoughts. Went back on the 1 mg. which felt like it was too much already the first time around after having gone cold turkey. Now, my suicidal thought and hopelessness - the feeling that I did everything wrong in life - and the panic has gone away most of the day (a bit bad at night though, but I try to just sleep or watch television). Now, my brain can function a bit again, but I feel uneasy again, want to run to get agitation out of my body, and don't know what to do with my self when I have a whole weekend with my kids. I am agitated but stuck. I feel stuck between a rock and a hard place... The 1 mg is definitely too much for my system to handle - again! - and I shouldn't just quit. So, what to do? Go down to 0,9 mg? (water solution). I have written my psychiatrist, who is from the branch of "critical psychiatry" (halleluja!) to ask for permission to try 0,5 mg. Lamotrigine in an attempt to get my system to calm down, so I can taper "underneath" it with, but he hasn't written me back yet, and maybe I have to wait until mid July to get a reply. What do I do now? I feel like I have the initial symtomps of starting an SSRI combined with the withdrawal symptoms AND the adverse effect that made me want to quit in the first place all at once (and I guess that is possible, isn't it?). I am gonna try 0,9 mg. tomorrow to see how my body and whole system reacts...

(sorry for the talking-to-myself style of writing, I can't do better right now)

[Ariel]

Hi @Kathrine

Nice to meet you.

I see you joined in March -- maybe it's not too late to say: Welcome to SA. 

Glad you've found us and sorry for what has brought you here. 

 

I've read your recent post in the Lamictal/lamotrigine topic.

I'm re-posting it here in your own thread (see below) because it contains valuable information relevant to your own personal drug/withdrawal journey. 

It's important to keep any information about your own drug/withdrawal history collected in your own topic because it helps members and moderators assist you.

For the same reason, please keep your drug signature up to date as you go. 

 

Furthermore, SA functions as an ongoing research project, gathering longitudinal data about psychiatric drug withdrawal based on the many thousands of case histories represented here.

By sharing our stories we are contributing to vital research that has already made a significant impact in the scientific literature, and in raising awareness about psychopharmacological iatrogenic illness. 

 

1 hour ago, Kathrine said:

Hi all

I've read all the posts on this topic, and just wanted to let you know that my p-doc and I decided to try to see if a very small amount of Lamictal can help me out of the last 1 mg Sertraline, because I am stuck in a kindling respose-thing (lowering the dose causes suicidal ideation, panic and a feeling of having ended up in someone else's life, but going back up the drug causes anger from hell, nerve pain in my teeth, agitation, jitters, and that restless feeling of not being able to sit still/be in your own skin). I feel like I am having the initial bad adverse effect of the drug with the symptoms of getting on the drug (reinstatement for me means getting the "starting symptoms") and withdrawal symptoms all at once – both the physical and the emotional...

The hope is that I can taper a little bit "underneath" the lamictal, but it IS AN EXPERIMENT. I get that you are supposed to be OUT of the drugs before adding Lamictal to counter WD/PAWS. I am fully aware. So, I am just writing to ask if I should post here about any results I might have? 

(I am 200 mg. of Seroquel as well, and can't taper that before I am done with my SSRI taper because I cannot fall asleep on SSRI's). 

My doctor said I could start out at 5 mg., but I am starting at 0,5 for 4-7 days to see how it goes. My system is definitely hyper reactive to any changes - really, really small changes in the daily intake of the SSRI, to caffeine, sugar, nicotine gum, hunger, being too full. 

I did take a small standard dose of Lamotrigine for a short while earlier on in life, and that is what makes me "allow myself" to try it, as I remember it well and had no trouble quitting that (it was after a short while though, and this time, I will taper slowly).

So, let me know if I should post my possible resultats or setbacks here?
 

 

In response to your question, for the reasons mentioned above, I suggest you post about your experiences with lamotrigine here in your own topic first and foremost. 

It would be great to read your updates about possible results, setbacks, discoveries, etc., so please do come back and share. 

 

Another thing -- it sounds like you are working with a well-informed, qualified psychiatrist who acknowledges the existence of psych drug withdrawal syndrome and is open to (or perhaps even experienced with?) providing medical assistance based on what you actually need. Sounds like they listen to you and take you seriously, and how cool that they have a critical psychiatry perspective. In other words, it sounds like you've found a good doctor! 

 

Would you please consider adding your doctor's/psychiatrist's name to this topic? That way other SA members will be able to find your recommendation.  

It can make such a difference having someone on one's side out in the real world. 

 

Thank you for your posts and please do keep us updated on your lamotrigine experiment. 

Good luck, healing vibes <3

Ariel

 

 

 

[Kathrine]

5 hours ago, Ariel said:

Hi @Kathrine

Nice to meet you.

I see you joined in March -- maybe it's not too late to say: Welcome to SA. 

Glad you've found us and sorry for what has brought you here. 

 

I've read your recent post in the Lamictal/lamotrigine topic.

I'm re-posting it here in your own thread (see below) because it contains valuable information relevant to your own personal drug/withdrawal journey. 

It's important to keep any information about your own drug/withdrawal history collected in your own topic because it helps members and moderators assist you.

For the same reason, please keep your drug signature up to date as you go. 

 

Furthermore, SA functions as an ongoing research project, gathering longitudinal data about psychiatric drug withdrawal based on the many thousands of case histories represented here.

By sharing our stories we are contributing to vital research that has already made a significant impact in the scientific literature, and in raising awareness about psychopharmacological iatrogenic illness. 

 

 

In response to your question, for the reasons mentioned above, I suggest you post about your experiences with lamotrigine here in your own topic first and foremost. 

It would be great to read your updates about possible results, setbacks, discoveries, etc., so please do come back and share. 

 

Another thing -- it sounds like you are working with a well-informed, qualified psychiatrist who acknowledges the existence of psych drug withdrawal syndrome and is open to (or perhaps even experienced with?) providing medical assistance based on what you actually need. Sounds like they listen to you and take you seriously, and how cool that they have a critical psychiatry perspective. In other words, it sounds like you've found a good doctor! 

 

Would you please consider adding your doctor's/psychiatrist's name to this topic? That way other SA members will be able to find your recommendation.  

It can make such a difference having someone on one's side out in the real world. 

 

Thank you for your posts and please do keep us updated on your lamotrigine experiment. 

Good luck, healing vibes ❤️

Ariel

 

 

 

Thank you! For now: How do I update my signature? I can't add any more lines...
I tried to add:

2024: Back on 1 mg. Sertraline. (Still on 200 mg Quetiapine). Got bad reaction to going back on. Went off. Got worse. Back on 0,9 mg. Trying to go back on fish oil and magnesium too, and trying to quit coffee, sugar and occasional nicotine gum. 

[Ariel]

Hi @Kathrine

 

42 minutes ago, Kathrine said:

Thank you! For now: How do I update my signature? I can't add any more lines...
I tried to add:

2024: Back on 1 mg. Sertraline. (Still on 200 mg Quetiapine). Got bad reaction to going back on. Went off. Got worse. Back on 0,9 mg. Trying to go back on fish oil and magnesium too, and trying to quit coffee, sugar and occasional nicotine gum. 

 

You could edit your signature by condensing the first few lines. The most recent years are the most important. 

 

For example, you could replace the first 5 lines with something like:

Approx. 2000-2015: on and off varying doses of citalopram, seroquel, sertraline, lamotrigine; several CTs. 

 

That will give you more room to update with what's current. 

[Kathrine]

@Ariel, now I have time for at proper reply...
Thank you for taking the time to write. 

I've updated my signature and mentioned two psychiatrists in the section you send me a link to. They are both outspoken about their thoughts on psychiatry, and I choose my psychiatrist because of his public outspokenness. 🙂 I finally have agency. And yes, it makes all the difference in the world! I am treated like a grown up with a functioning brain and an ability to use it for my own good. Also, so far he cannot see there's anything wrong with me besides the side effects of the first drug I got from psychiatry many years ago, which aligns with my own thoughts. It makes me happy, but sad that I believed all the diagnoses that followed.

Anyways, my goal for now it to get out of the 1 mg. a bit faster than the 40 weeks I had planed, as the 1 mg. is not really giving me relief - just a different set of symptoms, and some that are the same as the ones that appear on 0 mg. Sertraline. 

The plan is, now, to withdraw from coffee, because I went back to my old pattern (that I had when I had to 'come up' everyday from a lot of Seroquel) of just getting through the day on liters of coffee, sugar and the occasional nicotine gum. I listed to the Life on Less Meds podcast, and the host talked about his own constant coming down from psychoactive stimuli (caffein and nicotine) during the day, and that really hit me. I tried to quit coffee cold turkey, and of course that did not go well. I should've know that about all cold turkeys now. 😕 So, I am tapering coffee, going way back on sugar and will be trying to keep up with my fish oil, magnesium and as low carb a diet as I can practically manage with two kids and all. So far less coffee seems to relieve the anxiety and depressive thoughts in the morning that I thought were WD-provoked.

(Also, I have to find podcasts and shows with loads of episodes that do not set my system off in any respect.) 

And then when I've come down from coffee and sugar, I'll try to do 0,5 mg. of Lamotrigine, as I said. The theory is that the GABA will make it possible to camouflage the withdrawal symptoms a bit going out of the last 1 mg. Sertraline, and I am doing it because I think I kindled my system, so the going back on 1 mg. from 0 mg. makes me ill, but going out makes me ill too (and suicidal, so even though the amount of symptoms are fewer going out than the symptoms from going back on the 1 mg, the one symptom I do get from going out is worse – and possibly dangerous of course).

And as said, I know going on one drug to get out of another is a gamble, but I will try, and report back - for research and peer-support. 😉


 

[Kathrine]

Okay, I have to add one last note - if only just for myself to remember later...: 

Really, I am ready to do anything at this point to be able to give my kids a "regular mom". They are okay, but I have not given them the opportunities I should have during all those years on the meds where everything has been a struggle. Now, I feel I am closer to being able to have company over, to help my son with his relations (playdates!) and being more spontaneous from day to day, but I can't get there having (it seems) "kindled" myself. And they are growing, and they can't just wait. And I want nothing more in life than to be a good mom - a hell of a better parent than I had. I simply have to - and I have to be a better mom NOW, not somewhere in the future where it might be too late. Should it cost me more years of my life or having to taper for more years with more drugs (thinking about the lamotrigine on top of the two others), then that's the way it's gonna be. I just can't keep putting off being the mom I need to be because of choices I made in the past. It's not fair to them. 

[Ariel]

@Kathrine

 

On 6/19/2024 at 2:21 PM, Kathrine said:

I've updated my signature and mentioned two psychiatrists in the section you send me a link to. They are both outspoken about their thoughts on psychiatry, and I choose my psychiatrist because of his public outspokenness. 🙂 I finally have agency. And yes, it makes all the difference in the world! I am treated like a grown up with a functioning brain and an ability to use it for my own good. Also, so far he cannot see there's anything wrong with me besides the side effects of the first drug I got from psychiatry many years ago, which aligns with my own thoughts. It makes me happy, but sad that I believed all the diagnoses that followed.

 

Thank you for updating your signature and adding the relevant names of psychiatrists here. 

This will be helpful for members and staff alike.

 

20 hours ago, Kathrine said:

Really, I am ready to do anything at this point to be able to give my kids a "regular mom". They are okay, but I have not given them the opportunities I should have during all those years on the meds where everything has been a struggle. Now, I feel I am closer to being able to have company over, to help my son with his relations (playdates!) and being more spontaneous from day to day, but I can't get there having (it seems) "kindled" myself. And they are growing, and they can't just wait. And I want nothing more in life than to be a good mom - a hell of a better parent than I had. I simply have to - and I have to be a better mom NOW, not somewhere in the future where it might be too late. Should it cost me more years of my life or having to taper for more years with more drugs (thinking about the lamotrigine on top of the two others), then that's the way it's gonna be. I just can't keep putting off being the mom I need to be because of choices I made in the past. It's not fair to them. 

 

I hear you.

 

And I'd like to offer the following:

 

a) You are probably doing a much better job than you think. We tend to be really hard on ourselves, especially in relationships and situations that matter the most. Give yourself grace <3

 

b) Remember that you are currently experiencing withdrawal (WD) from CTs of two powerful drugs, as well as from a fast taper decreasing dosage of a third potent drug. In addition, you may be experiencing adverse effects of the drug you are still on. As you know, in addition to a wide variety of physical symptoms, WD causes many emotional and mental symptoms, for example what we call neuro-emotions and ruminating thoughts. Under the influence of WD, we can have increased cognitive distortions, negative thinking and uncomfortable/unpleasant feelings. All this to say, whatever lens you are currently evaluating yourself through, that lens may be fogged by not only any pre-existing self-criticism but also WD-related negative bias. Give yourself grace <3

 

c) Nobody has a "regular mom". At least, I've never met anyone with a "regular mom," and I've never met an actual "regular mom" either! (I don't even know what that means.) Of course, I think I know what you're getting at, and I'm not diminishing your highly relatable and commendable wish to be the best parent you can be for your children. (In fact, it seems like a very "regular" desire!)  I'm just saying, there's a lot of BS in culture/society (and consumer capitalism seeding and feeding off of our insecurities to make us buy more products) about what a "perfect childhood" looks like and "perfect parenting", etc. and a lot of unfair expectations are heaped on mothers especially. It's easy to internalize the pressure and then turn it against ourselves. There is so much noise out there and it can be hard not to be affected, all the more so when we are feeling vulnerable. Give yourself grace <3

 

d) So much of parenting (and leadership and relationships and social interactions in general) is modeling behavior. Think of what a phenomenal role model you are and will continue to be to your children! With every step of the way you are modeling courage, strength, resilience, determination, patience, perseverance, the capacity and willingness to do hard things and overcome adversity (just to name a few). Having a mother who demonstrates these qualities is invaluable. So much of this type of learning happens through osmosis and representation, and you are embodying powerful traits that are truly transformative to absorb. (Not to mention the fact that, given everything you've been through and are going through, you will probably never drug your own children, which will protect and save them from a world of pain.) Give yourself grace <3

 

It's so important to practice meeting ourselves with unconditional love, acceptance, compassion -- just as we do our beloved children -- and care for ourselves wholeheartedly. Self-care is family care is community care. If we want to show up for the people we love, if we want to be present in relationship and connection, caring for ourselves is not optional. It is a prerequisite. Loving ourselves is a fundamental, ongoing, daily practice that allows us to love others.  

 

From my perspective it looks like you're doing so many things right. You are taking charge of your health by doing the slow, painstaking, deliberate work of coming off of harmful/risky drugs. This is a process, and it takes time. You are setting yourself up for success by seeking out qualified support, for example via contact with a knowledgeable, "enlightened" psychiatrist as well as an online peer support forum. You are reflecting on your values, clarifying your priorities, and focusing on what you want for yourself and your family. These are all crucial steps on the healing path, and you are moving forward, one foot in front of the other! Again: self-care is family care is community care. Every single action you take to fill your own cup will spill over to benefit those around you. 

 

How is your support system, beyond the good doctor and SA? Do the adults in your family know what you are going through and support you in your journey to get off these drugs? Do you have adequate child care? Do you have a stable financial situation? The more "social scaffolding" you have around you, the better you'll be able to navigate WD in a way that allows you to be there for your kids as you go. Most likely you already know this; you sound lucid, aware and grounded. You write so beautifully, "I finally have agency." That empowerment is going to help you all the way through and across the finish line! You are capable and competent, and I'm sure you got this. And even the strongest, most resourced among us rely on support, and I want to support you in finding the support you require. It can be very heavy to shoulder it all alone. 

 

On another note -- 

 

On 3/8/2024 at 12:46 PM, Kathrine said:

the doctors cannot understand why my body won't take in enough oxygen for my oxygen saturation in the blood to be normal. I suggested that it might have to do with the fact that I JUST came off several kinds of meds that had a severe impact on my breathing (I was hyperventilating all day every day), but they just looked at me funny. But it does make sense to me that I am now "hypo ventilating" because my body is out of balance? Am I totally off here?

 

I'm not a doctor, and obviously I cannot know what is going on with your particular medical situation. It's good to test for and eliminate any non-WD illnesses wherever possible. 

What I can share is that I had this same exact symptom -- measurably low blood oxygen levels -- for an extended period of time. It has resolved. In my case there was no underlying medical/pathological cause, which led me to conclude that it was WD-related (part of the complex, diverse symptom profile of WD dysautonomia). I didn't bother wasting time or energy trying to get a physician to understand or acknowledge this. I accepted it for what it was, practiced AAF (Acknowledge - Accept - Float), and waited it out. Sure enough, it passed. 

 

WD is temporary. This too shall pass. 

It gets better, I promise. 

You have already come so far, learned so much, gained so much clarity. And you are moving forward with clear goals and your eye on the prize, as well as an excellent, constructive attitude. 

Congratulations on all your hard work to date, everything you've been through and endured. Did I mention -- ? Give yourself grace <3  ;-) You are amazing!

You're going to win this thing, you're already winning. 

Healing is happening <3

 

In solidarity and support,

Ariel

 

 

 

[Kathrine]

Thank you so much for all your very caring words @Ariel!!! ❤️ It's really nice of you to take the time. I read it three times, and I'll try, try, try with grace! 

[Kathrine]

To anyone who might me interested, and for the sake of my own documentation: 

I did a 0,5 mg. dose of lamotrigine (pill in water plus a bit of salt) today because I could not wait till monday which was my plan (ground kept disappearing beneath my feet, parkinsonism kept on 24/7, I got that WD sleeplessness you guys are talking about, and my cortisol mornings have gotten so much worse this week. Constant "fight flight" stress and panic from the alerting system. And I have people totally dependent on me, so I just can't right now. It is not an option. 

I don't know if my surge in WD is due to the fact that I went almost cold turkey in January, due to the fact that I went back on at 1 mg. and then tried to get back out due to a bad reaction, or due to the fact that I went back om 1 mg again, or due to the fact that I tapered coffee and sugar too fast which definitely was a trigger. I DO know, that I will not ever go up more than 1 mg Sertraline because the symptoms of going back on the drug (adverse, symptoms of starting a drug and just all the reasons I had to go out fast - especially my heart pounding hard non stop, trouble catching my breath 24/7 and PGAD and more) are just as bad as going out of the drug. But still, it is not an option going out the last 1 mg. because the one really persistent symptom of that is suicidal ideation or "simply" the very convincing idea of getting up, walk off and just leaving my life and my loved ones behind. And that is NOT me, that is NOT how I ever felt before, and it makes absolutely NO sense. But it is hardcore when it is there. 

So, conventional wisdom in here would be go up in dosis of the drug you get WD from, or go out. I can't do either right now, as both leaves me in a state where I cannot take care of others which I have to (and want to very much!). So (and I know I am repeating my self, but I have brain fog, so I just can't do better. My words get lost all the time, and my thought seem to just disappear into nowhere), that is why I am trying 0,5 mg. of Lamotrigine on top of 1 mg. Sertraline and 200 mg. Seroquel/Quetiapine hoping Lamotrigine's effect on GABA might relieve some WD symptoms. And so, back to the fact that I took it today:

I took it in the morning, not the evening, partly because I just couldn't be in my own skin and constant stress response anymore, partly because I figured that if it would give me a sense of calm then the morning (and during the day right now) is when I need it. And yes, it made me a bit tired within a few hours, but in a good way, a calm way. In a nice way! So far, it is the first day this week where I can actually breath and I am not in a (constant) panic. It might be placebo of course (and yes, most of those stupid pdocs would laugh, I know, and I can hardly fathom it my self if 0,5 mg would make a difference...), but I am gonna continue for 4 days to see if this state repeats itself.

I'll report back hoping it might make a difference for someone some day. 

[Kathrine]

4 hours ago, Kathrine said:

To anyone who might me interested, and for the sake of my own documentation: 

I did a 0,5 mg. dose of lamotrigine (pill in water plus a bit of salt) today because I could not wait till monday which was my plan (ground kept disappearing beneath my feet, parkinsonism kept on 24/7, I got that WD sleeplessness you guys are talking about, and my cortisol mornings have gotten so much worse this week. Constant "fight flight" stress and panic from the alerting system. And I have people totally dependent on me, so I just can't right now. It is not an option. 

I don't know if my surge in WD is due to the fact that I went almost cold turkey in January, due to the fact that I went back on at 1 mg. and then tried to get back out due to a bad reaction, or due to the fact that I went back om 1 mg again, or due to the fact that I tapered coffee and sugar too fast which definitely was a trigger. I DO know, that I will not ever go up more than 1 mg Sertraline because the symptoms of going back on the drug (adverse, symptoms of starting a drug and just all the reasons I had to go out fast - especially my heart pounding hard non stop, trouble catching my breath 24/7 and PGAD and more) are just as bad as going out of the drug. But still, it is not an option going out the last 1 mg. because the one really persistent symptom of that is suicidal ideation or "simply" the very convincing idea of getting up, walk off and just leaving my life and my loved ones behind. And that is NOT me, that is NOT how I ever felt before, and it makes absolutely NO sense. But it is hardcore when it is there. 

So, conventional wisdom in here would be go up in dosis of the drug you get WD from, or go out. I can't do either right now, as both leaves me in a state where I cannot take care of others which I have to (and want to very much!). So (and I know I am repeating my self, but I have brain fog, so I just can't do better. My words get lost all the time, and my thought seem to just disappear into nowhere), that is why I am trying 0,5 mg. of Lamotrigine on top of 1 mg. Sertraline and 200 mg. Seroquel/Quetiapine hoping Lamotrigine's effect on GABA might relieve some WD symptoms. And so, back to the fact that I took it today:

I took it in the morning, not the evening, partly because I just couldn't be in my own skin and constant stress response anymore, partly because I figured that if it would give me a sense of calm then the morning (and during the day right now) is when I need it. And yes, it made me a bit tired within a few hours, but in a good way, a calm way. In a nice way! So far, it is the first day this week where I can actually breath and I am not in a (constant) panic. It might be placebo of course (and yes, most of those stupid pdocs would laugh, I know, and I can hardly fathom it my self if 0,5 mg would make a difference...), but I am gonna continue for 4 days to see if this state repeats itself.

I'll report back hoping it might make a difference for someone some day. 

Just talking to my self here, maybe, but just wanted to register that only side effect I registered to (possibly) Lamotrigine today is more muscle stiffness than usual.

[Kathrine]

Just checking in...

I feel really good! 

I took 0,5 mg. lamotrigine for 6 days, and it seemed to break the stress cycle. Could be a coincidence, or it could be an effect, I don't know. But I got some sleep, and I feel good, not just tolerable, now, approx. a week later. I haven't taken Lamotrigine the last two days, and so far that seems fine. 

I am really (!!!!) tired though. But my guess is that is my body's happy response to me not having caffein in my diet anymore (and no occasional nicotine gum, and only small amounts of sugar compared to before), and also maybe my body saying "Okay, we are almost through this... I need restitution, I am tired". I hope so. My panic-stress-stat is gone for now, and I can think!!!!!!!!! I can read a text, and think!!!!!!!! 

Hoping it will last, but it might be a window, I know... 

[Ariel]

Hi @Kathrine

Thanks for the update. 

 

On 6/30/2024 at 8:48 PM, Kathrine said:

I took 0,5 mg. lamotrigine for 6 days, and it seemed to break the stress cycle. Could be a coincidence, or it could be an effect, I don't know. But I got some sleep, and I feel good, not just tolerable, now, approx. a week later. I haven't taken Lamotrigine the last two days, and so far that seems fine. 

 

Interesting.

I thought lamotrigine was supposed to be taken every day. Is the plan to take it ad hoc, as opposed to regularly?

 

I'm curious because lamotrigine is a drug that requires tapering off of. 

Please be careful <3

[Kathrine]

22 hours ago, Ariel said:

Hi @Kathrine

Thanks for the update. 

 

 

Interesting.

I thought lamotrigine was supposed to be taken every day. Is the plan to take it ad hoc, as opposed to regularly?

 

I'm curious because lamotrigine is a drug that requires tapering off of. 

Please be careful ❤️

Hi @Ariel. Thank you, I know. I have had no bad effect of just stopping after the 6 x 0,5 doses. I am aware that I am experimenting here. I am NOT writing it here to recommend to others, I am only registering it here so that others can see my "tapering journey" (and we don't know what people might find out 10 years down the line, and then it might suddenly be relevant, is my thought...). I am keeping the Lamotrigine in my cupboard for now in case of similar reactions to the one I had prior to taking it, but I won't be taking it now. And again, should others read this: This is not advice on my part. This is me registering an experiment. Hope that makes sense...

[Kathrine]

Oh, and @Ariel, please note, I have a p-doc involved that is apt for tapering processes... 🙂 And: Thank you for caring! ❤️ 

[Ariel]

Hi @Kathrine

 

21 minutes ago, Kathrine said:

Hi @Ariel. Thank you, I know. I have had no bad effect of just stopping after the 6 x 0,5 doses. I am aware that I am experimenting here. I am NOT writing it here to recommend to others, I am only registering it here so that others can see my "tapering journey" (and we don't know what people might find out 10 years down the line, and then it might suddenly be relevant, is my thought...). I am keeping the Lamotrigine in my cupboard for now in case of similar reactions to the one I had prior to taking it, but I won't be taking it now. And again, should others read this: This is not advice on my part. This is me registering an experiment. Hope that makes sense...

 

Yes, and I'm glad you're registering your experiment. Thank you for sharing.

I know you're not endorsing or recommending it to others. 

 

22 hours ago, Ariel said:

Interesting.

I thought lamotrigine was supposed to be taken every day. Is the plan to take it ad hoc, as opposed to regularly?

 

 

This question comes from genuine curiosity on my part. No judgment, no criticism whatsoever.

 

I am wondering whether, as part of your lamotrigine experiment, the plan is to take it ad hoc?

And if you plan to administer lamotrigine topically/occasionally (as opposed to taking it every day), what is the reasoning behind this? 

Are there any papers, studies, anecdotal evidence that you and your doctor are basing this on? And if so, what are they?

 

Do you know that SA's founder Altostrata used lamotrigine to help manage PAWS? 

 

On 6/30/2024 at 8:48 PM, Kathrine said:

I took 0,5 mg. lamotrigine for 6 days, and it seemed to break the stress cycle. Could be a coincidence, or it could be an effect, I don't know. But I got some sleep, and I feel good, not just tolerable, now, approx. a week later. I haven't taken Lamotrigine the last two days, and so far that seems fine.

 

I'm also curious as to, if the lamotrigine seemed to be helping for 6 days, why you decided to stop taking it? 

What made you decide not to take it regularly, given that you noticed a positive effect? 

 

You've just recently cut back on caffeine and sugar, if I remember correctly. 

Are you spacing the changes you're making so that they don't overlap?

If you make too many changes at once, how will you know what's what? 

What tracking methods are you using, if any? Do you keep a daily symptoms journal or a checklist of some sort?

I'm curious about your methodology. 

 

Again, I'm asking because I'd like to learn and follow along in your experiment. I love science and any mention of an experiment really gets me going! 

That's the thing about sharing -- one risks other people paying attention ;-)

 

Of course it's up to you what you choose to divulge. No judgment, no pressure. 

You don't owe me anything. 

I wish you the best of luck regardless, and I trust you are healing and will heal no matter what. 

 

In solidarity and support,

Ariel

[Kathrine]

Hi @Ariel and who ever might stop by...

Sorry for my late reply. I've had happy windows and heavy waves. 

I skipped the Lamotrigine experiment for now. I figured out quitting coffee wasn't right for me for now. Going way down was a good idea 'cause I drank coffee by the liters, and 0,5-1,5 liter of coke on top and chocolate (80% cocoa, 40 grams per day), and then sugar on top from late morning til late evening - a habit I developed to counter the effect of Quetiapine/Seroquel as I mentioned earlier. So, quitting coffee etc. completely threw me off course, and left me depressed and extremely tired 24/7. I tried for weeks with not even the slightest improvement in that condition, and there was no clear pattern of improvement in sleep.

I am sure, quitting coffee will be the right thing for me long term, and going way down to two very small cups a day is so much better than before when I felt high all day. But I am still on Seroquel/Quetiapine, which lowers dopamine, and as far as I know long term coffee use - and "abuse" - increases the number of dopamine receptors in the brain, so...

Regarding your questions about my Lamotrigine experiment: 

1) It was an attempt at having an alternative to taking 1/4 of a benzo from time to time even though I have never had trouble with occasional benzos. It was only based on the theory of it regulating GABA and on altostratas experience.

2) I stopped due to no certain effect and chickening out. I might try it again for 7 consecutive days if my WD symptoms worsens. 

Right now I am back in a hole of sorrow and anger and despair due to what psychiatry has done to me and us. How can life just go on after that? I don't get it.