SkyBlue: Paxil taper

[Rachelina]

My bottle of liquid Paxil says discard after one year.  This is on the label printed by the pharmacy, and they always say the same thing no matter what kind of medicine it is. But I feel like if the liquid were unstable after a few months, they would say so. Maybe I'll try calling the manufacturer, because I'm also planning on using the same bottle for a long time. 

 

SkyBlue, I just stopped by your thread because I remembered you'd posted about an online refill service, and I think I'm going to need it since my insurance has started charging me $100 copays for liquid Paxil.  I may PM you for advice. Thank you so much for letting us all know about it!  I hope the rest of your taper goes smoothly! 

[SkyBlue]

6 hours ago, Rachelina said:

My bottle of liquid Paxil says discard after one year.  This is on the label printed by the pharmacy, and they always say the same thing no matter what kind of medicine it is. But I feel like if the liquid were unstable after a few months, they would say so. Maybe I'll try calling the manufacturer, because I'm also planning on using the same bottle for a long time. 

 

SkyBlue, I just stopped by your thread because I remembered you'd posted about an online refill service, and I think I'm going to need it since my insurance has started charging me $100 copays for liquid Paxil.  I may PM you for advice. Thank you so much for letting us all know about it!  I hope the rest of your taper goes smoothly! 

 

Hi Rachelina,

Thanks for stopping by. Yes, those are important things to consider (expirations, etc). Arg!! Thanks for your kind words, and the same to you! 

 

Feel free to ask any questions, either here or via PM, about the online refill service. Just to clarify, CallOnDoc.com is the service where you request a refill, like going to the doctor--they called in my prescription and I still had to pay for it. 

 

I haven't used them, but there is a (fully legal and above-board, it seems) Canadian pharmacy that has liquid Paxil, 150ml for $81.29 plus shipping. There is a few weeks' turnaround time, but so much better than paying $100 like you are. (Oh--actually if you're getting the 250ml for $100, that's actually a better deal, but I'll keep this here in case someone can use it.) https://www.northwestpharmacy.com/howtoorder.aspx

 

 

[Rachelina]

Thank you so much for the clarification and link, SkyBlue! I thought the $29.99 was going to cover the cost of the prescription. But it looks like the Canadian pharmacy will be a better bet,  because I'm only getting 90 mL bottles, so 150 mL for $81.29 is pretty good. Isn't it wonderful that we not only have to take this toxic stuff, but we have to constantly be worrying about where our next bottle of it is coming from. 

 

FYI I found a pretty ancient (10 years old) bottle of liquid Paxil that I haven't thrown out because I'm not sure where to safely do so. It has the manufacturer's label on it, with guidelines about storage temperature and so on, and nothing about discarding it after a certain period. I also checked the online medication guide from the manufacturer, and there was nothing about shelf life. So that's a good sign. I'm pretty sure this stuff lasts a while! 

 

[SkyBlue]

You're very welcome, Rachelina! 

 

Yikes, a 10 year old bottle of Paxil, that stuff is going to be even more toxic than "regular" Paxil! I'm saving some of my prescriptions, old bottles, etc., to make some kind of celebratory art project with eventually. : ) 

 

 

 

[SkyBlue]

Hi friends,

 

I'm still hanging in there!

 

I'm continuing to have intense suicidal ideation on a regular basis. It's usually predictable -- within a ten-day time frame each 25 days--and is absolutely hormone-related. I have many skills to cope with it without bringing others into the reality of how I'm really feeling. If it happens during the day I'm at a much better place to deal with it, reach out, distract, text the 741741 crisis line. In the middle of the night when I wake up wishing for death, it's more difficult. 

 

At this point, 2.5 years out, I am having difficulty believing that it will ever pass. At the super-careful, slow rate I am now tapering, I'm not noticing any NEW symptoms--which I'm grateful for, I really am—

I just really hope that whatever's waiting on the other side of this is worth coming through this.

 

Hope everyone is doing okay. <3

[SkyBlue]

My current ways I'm taking care of myself are:

 

*simple breathing exercises to calm the nervous system (mainly doing 5-6 breaths per minute as discussed in the book The Healing Power of the Breath... really, calming breathing exercises do NOT need to be complicated and should not be strenuous);

*journaling every day

*yoga (even a few simple poses at home); not-insanely-intense exercise;

*magnesium (Natural Calm), fish oil (doesn't seem to have an effect, but presumably is a good idea),

*mostly whole food without freaking out about it, and within what works for me

*Mindfulness--esp. noticing thoughts, labeling thoughts, separating from thoughts... this takes soooo much practice but is really awesome--I'm in a mindfulness group;

*as part of mindfulness, developing self-compassion (trying to treat yourself as well as you would treat a friend)

*meditation;  meditation with background sounds like "underwater sounds" or "rain at night" or "Long trip in an RV" as well as guided meditation on youtube; 

*gratitude, incl a gratitude app (called Gratitude);

*not looking for validation for WD within the medical model ("There's got to be a doctor that will understand"); 

*not googling hormone imbalances, menstrual problems, (even though I did this last night . see self-compassion, above).

*"mindful distraction" as discussed w/my therapist: doing something to distract on purpose (doesn't mean I won't come back to the issue at hand), watching Midsomer Murders or Corner Gas (Canadian show), doing an easy online jigsaw puzzle (I do this when I have akathisia-- honestly it doesn't help with the akathisia, but it can help distract until the feeling is over)

*I am going to make a weighted blanket or at least weighted lap pad, to start.

 

[ChessieCat]

14 minutes ago, SkyBlue said:

I am going to make a weighted blanket

 

They aren't hard to make but you do need to plan ahead.  I made one for my son-in-law.  First off we tried using a single quilt cover but it was only a cheap one and was slippery.  I then used some calico curtain lining which I had from some old curtains.  I laid it flat folded in half on a 6 foot folding table and ruled lines from the folded edge.  I think we did 5 inch squares.  I then sewed the short row across the middle and then sewed down the long rows.  You then work from the middle towards the top and bottom.  When filling I only filled across 1 short row at a time, pinning each "pocket" and then stitched across.  It was too fiddly trying to do 2.  When doing 1 row the beads will fall to the left of the sewing machine and not get in the way.  I did try to fill 2 rows but accidentally sewed through a bead but thankfully because they are soft it didn't wreck anything.

 

The other thing I found helpful was putting a board beside/underneath the end of the sewing machine to rest the blanket on, so that the board makes an extension to the left of you and keeps the blanket all on one level.  I use my ironing board to sew on and the board extended across the ironing board.

 

You also need to add extra at the top and the bottom so that you can turn it over twice and stitch along to finish off.  So as an example add an extra 2 inches top and bottom and then turn over 1 inch and then turn over another inch and stitch along.

[brassmonkey]

I'm sorry to hear that your struggling so badly with the SI Sky.  That's a tough one, but at least you know the pattern and have a plan that works.  The last little bit can be a total pain in the ........ Most of the old symptoms have settled out, but there is always that one that wants to stick around and cause trouble to the very end.  Hang in there, it does get better the lower you go.

 

((((((((((((((((((((((((((HUGS))))))))))))))))))))

 

Brass

[SkyBlue]

On 3/21/2018 at 10:29 PM, ChessieCat said:

They aren't hard to make but you do need to plan ahead. 

 

Chessie, thanks for the excellent tips. I really appreciate the detailed info from someone who's done it. 

I am going to start with a lap pad (smaller), and I'll post about it here and in the weighted blankets thread. 

Thanks very much! 

[SkyBlue]

On 3/22/2018 at 12:53 AM, brassmonkey said:

I'm sorry to hear that your struggling so badly with the SI Sky.  That's a tough one, but at least you know the pattern and have a plan that works.  The last little bit can be a total pain in the ........ Most of the old symptoms have settled out, but there is always that one that wants to stick around and cause trouble to the very end.  Hang in there, it does get better the lower you go.

 

((((((((((((((((((((((((((HUGS))))))))))))))))))))

 

Hi Brass, 

Thanks so much for your kind words. It's aggravating, but I am having MANY good days now, so I'm definitely seeing that it does get better the lower you get. 

 

((((HUGS))) right back at you! : ) 

[powerback]

On ‎22‎/‎03‎/‎2018 at 2:57 AM, SkyBlue said:

My current ways I'm taking care of myself are:

 

*simple breathing exercises to calm the nervous system (mainly doing 5-6 breaths per minute as discussed in the book The Healing Power of the Breath... really, calming breathing exercises do NOT need to be complicated and should not be strenuous);

*journaling every day

*yoga (even a few simple poses at home); not-insanely-intense exercise;

*magnesium (Natural Calm), fish oil (doesn't seem to have an effect, but presumably is a good idea),

*mostly whole food without freaking out about it, and within what works for me

*Mindfulness--esp. noticing thoughts, labeling thoughts, separating from thoughts... this takes soooo much practice but is really awesome--I'm in a mindfulness group;

*as part of mindfulness, developing self-compassion (trying to treat yourself as well as you would treat a friend)

*meditation;  meditation with background sounds like "underwater sounds" or "rain at night" or "Long trip in an RV" as well as guided meditation on youtube; 

*gratitude, incl a gratitude app (called Gratitude);

*not looking for validation for WD within the medical model ("There's got to be a doctor that will understand"); 

*not googling hormone imbalances, menstrual problems, (even though I did this last night . see self-compassion, above).

*"mindful distraction" as discussed w/my therapist: doing something to distract on purpose (doesn't mean I won't come back to the issue at hand), watching Midsomer Murders or Corner Gas (Canadian show), doing an easy online jigsaw puzzle (I do this when I have akathisia-- honestly it doesn't help with the akathisia, but it can help distract until the feeling is over)

*I am going to make a weighted blanket or at least weighted lap pad, to start.

 

Hi SB thanks so much for the visit to my thread ,I thought ide come over and say hi ,I will pay you the same respect someday and read your entire  thread ,I like your list here

,I was practicing mindfulness before withdrawl so its helped me a lot in life ,in the grocery store today it helped with bringing awareness to my rising anxiety and self-consciousness and I was starting to panic packing my bags but I just focused on the task and scoffed my dinner when I got home ,I get very hungry very quick due to stress on my adrenals ,I feel like collapsing when hunger comes on ,classic sign of adrenal fatigue  .

Take care 

[SkyBlue]

On 3/29/2018 at 2:03 PM, powerback said:

Hi SB thanks so much for the visit to my thread ,I thought ide come over and say hi ,I will pay you the same respect someday and read your entire  thread ,I like your list here

,I was practicing mindfulness before withdrawl so its helped me a lot in life ,in the grocery store today it helped with bringing awareness to my rising anxiety and self-consciousness and I was starting to panic packing my bags but I just focused on the task and scoffed my dinner when I got home ,I get very hungry very quick due to stress on my adrenals ,I feel like collapsing when hunger comes on ,classic sign of adrenal fatigue  .

Take care 

Hi PB and thanks for coming over. : ) 
I agree, mindfulness can be really great. It takes a while to develop but is so worth it. It's cool you were practicing it in the grocery store!

You take care too. 

[powerback]

I see your a mod Sky. kudos .I wish you well and all the best .

[Frogie]

Hi SkyBlue:

 

I saw you became a mod.

 

Congratulations!

 

Take care,

Frogie xx

[brassmonkey]

Welcome to the Mod Squad SkyBlue.

 

Brass

[SkyBlue]

Thanks, pb! Thanks, Frogie! Thanks, Brass! : ) 

[Frogie]

9 hours ago, SkyBlue said:

Thanks, pb! Thanks, Frogie! Thanks, Brass! : ) 

😊

[SkyBlue]

Hi everyone,

 

Thanks again for the kind words on becoming a moderator. : ) It's great to think of giving back a bit and maybe helping some people through this process.

 

I've been able to continue with the ~2% cuts/Brassmonkey slide. Although I still have the dp/dr and intense SI on a regular (somewhat predictable) basis [usually a ten-day time frame every 25 days], thankfully there are no *new* symptoms, even at this low dose.  I'm taking that as a very good sign.

 

I still find that on the good days, I want to do all the things, get back to life, which makes sense but of course it's important to pace ourselves. 

 

I've noticed some lingering dp/dr with the last cut, so even though I'm loving this momentum, I'm going to hold for a bit. It's about safety and stability, even though I'm SO! excited! to be somewhat-nearing the finish line. 

Hope and healing to everyone <3

[wantrelief]

Hey SkyBlue,

 

Congratulations on both becoming a moderator as well as being almost done with your Paxil taper!  You must be so happy to have successfully come down so far on the Paxil. I was hoping you could clarify your taper - are you doing 2% cuts every week per the Brassmonkey slide or a 2% cut once a month?  Is this the method you used for most of your taper?

[SkyBlue]

2 hours ago, wantrelief said:

Hey SkyBlue,

 

Congratulations on both becoming a moderator as well as being almost done with your Paxil taper!  You must be so happy to have successfully come down so far on the Paxil. I was hoping you could clarify your taper - are you doing 2% cuts every week per the Brassmonkey slide or a 2% cut once a month?  Is this the method you used for most of your taper?

 

Thanks, wantrelief!

 

Yes, currently I'm doing 2% cuts per week (with some holds), per the Brassmonkey slide.

(I've been doing this for about two years with the final 1mg of Paxil -- this is after my doctor-recommended cold-turkey from 20 to 5 and subsequent impairment.

So, it was: 

On Paxil for 18 years, 60 mg for most of that time (started at 20mg and worked up)

 

I started reducing on my own:

60mg to 50 to 40 to 30 on my own, over 3 months, with minimal problems. (This shows how badly over-medicated I was)

30mg to 20 I became suicidal for the first time in my life, and it immediately went away after updosing to 25 mg. I held here for a year.

In 2015, I thought I would seek "expert help" for the rest of the taper, so I went to a new psychiatrist. 

He took me from 25 to 20 to 10 to 5mg in four weeks. It was absolutely horrible and I demanded he give me liquid Paxil.

Over the next 6 months, I "tapered" myself at 20-25% per month or more, to 1.2 mg. I was getting worse and worse but thought it was my "original condition," and I was given Zoloft for that. 
In 2016, I found this site, held for three months, and ever since then have been doing the Brassmonkey slide.

 

Although I still have SI, dp/dr, rage and other severe issues, I believe these are from the original "cold turkey," and not from the Brassmonkey slide. I believe that the proof is that other than waves (which in my case are 100% hormone-related), I am doing better and better.

 

It can be done! ! ! ! ! 

Edited April 19, 2018 by SkyBlue
clarity

[wantrelief]

Thanks for the information, SkyBlue!

[SkyBlue]

You're very welcome, and thanks for stopping by! 

[Rosetta]

That's interesting that you think your waves are 100% hormone related.  I'm trying to figure out if mine are more related to hormones than they are random.

[SkyBlue]

16 hours ago, Rosetta said:

That's interesting that you think your waves are 100% hormone related.  I'm trying to figure out if mine are more related to hormones than they are random.

Rosetta,yes, they are 100% (or at least 90%!) hormone related, at least at this point. Early on in WD, I was in a wave pretty much all the time.

It was my very wise acupuncturist who noticed the hormonal component, when I told her I was feeling awful (not wanting to go on) again, and she asked where I was in my cycle. She said in her notes, I was feeling the exact way at the same point in my previous cycle! She's a genius.

 

I also know it is WD because I never had most of these symptoms before WD. That's usually the key. From being here on SA, it seems to be extremely common for symptoms to have a hormonal element. I'm concerned about the number of women who are diagnosed with bipolar disorder or other things when it is actually withdrawal.

Let me know if you figure out anything! I'm happy to share info/links (for example, April Crowell is an acupuncturist with a great blog that talks about "Blood Building," which is a relevant topic  http://aprilcrowell.com/asian-medicine/building-blood/ ). <3

[Rosetta]

Thank you, Sky.  I'll check that out.  I need to find a way to deal with the hormones -- diet maybe?  I don't knowc.  I haven't tried acupuncture yet.

[FarmGirlWorks]

I will pipe in here that acupuncture has been extremely helpful for me. As you know, my trip back East was extremely stressful and triggered me badly. I've missed a cycle which has been so regular due to the stress. And was thinking SI constantly. I thought perhaps reinstatement or HRT would take the edge off. And, TBH, the last two days I have taken 1/2 a benadryl to do that. But on Monday, went to the acupuncturist and she did an anxiety/withdrawal ear "protocol" and it truly helped improve the severity. I am going back today for a short session to do the ear protocol again. Four days later, I am still recovering from being so triggered and cannot be too stimulated without getting overwhelmed, but the anxiety has reduced to a non-suicidal level. Anxiety is connected to WD and my cycle/hormones for sure. I recommend it as long as you make it clear that you are in WD.

[Fightingawar]

On 4/19/2018 at 4:46 PM, FarmGirlWorks said:

I will pipe in here that acupuncture has been extremely helpful for me. As you know, my trip back East was extremely stressful and triggered me badly. I've missed a cycle which has been so regular due to the stress. And was thinking SI constantly. I thought perhaps reinstatement or HRT would take the edge off. And, TBH, the last two days I have taken 1/2 a benadryl to do that. But on Monday, went to the acupuncturist and she did an anxiety/withdrawal ear "protocol" and it truly helped improve the severity. I am going back today for a short session to do the ear protocol again. Four days later, I am still recovering from being so triggered and cannot be too stimulated without getting overwhelmed, but the anxiety has reduced to a non-suicidal level. Anxiety is connected to WD and my cycle/hormones for sure. I recommend it as long as you make it clear that you are in WD.

What is the ear protocol thing? Does Benadryl help your withdrawals? I’m still trying to figure out how to read somebody’s story so sorry if you have already said this stuff before 

 

[FarmGirlWorks]

@Fightingawar

The "ear protocol" is when the acupuncturist just sticks needles in your ears. I have no idea what meridians it activates. And the Benadryl does help in a pinch (SSRIs are anti-histamines too) but I use it only when I am absolutely jumping out of my skin as one doesn't want to become dependent on it or it having a paradoxical effect which it does for some ppl here. It doesn't for me so when I am on the literal edge, I pop one. But only when I absolutely am desperate. All of this feels desperate but there are always degrees...

[SkyBlue]

18 hours ago, FarmGirlWorks said:

 

 

On 4/19/2018 at 3:46 PM, FarmGirlWorks said:

I will pipe in here that acupuncture has been extremely helpful for me.  

 

 Anxiety is connected to WD and my cycle/hormones for sure. 

 

 

Hi FarmGirl, 

Same here--my WD symptoms are absolutely tied to my cycle and hormones. A thousand percent. 

 

I love acupuncture! I read that the ear acupuncture is also known as battlefield acupuncture because it's so portable it can be done anywhere. 

 

I'm so glad you mentioned to tell the acupuncturist if you're in withdrawal. Even if they don't totally understand SRRi withdrawal, they need to know to do only a relaxing, restorative treatment, nothing like "detoxification" or anything stimulating. I remember early on in WD I asked the acupuncturist to help me "detoxify" from Paxil **shudder**  It's amazing that our bodies put up with us and still keep us going. Thank you, body!!!!!!!

 

And a reminder to everybody to check out "community acupuncture." Patients are treated in a group setting, fully clothed. It is much more affordable.

[FarmGirlWorks]

Yes! I do community acupuncture too as it is all my budget can handle at present!

[SkyBlue]

It was this weekend three years ago that I followed my then-doctor’s recommendation to cut Paxil from 20 mg to 10 mg to 5 mg. 

 

I celebrate the very wise and strong voice inside me at that time, seeing me go through hell on earth and saying, this is not right, and stopping at 5 mg.  If the last three years have been hell (windows, yes, but debilitating waves including persistent, recurrent suicidality, where my whole world stops and I have to keep myself safe—this happens every menstrual cycle), I don’t want to think what it would have been like if I jumped off completely at 5mg. I’m lucky to be alive. I’m glad I am. 

I’ve spent the last 2+ years sllllooooowwwwwwllllly tapering off the last milligram of Paxil. I’m down to 0.33. 

 

Since I’ve last posted, I’ve had a few days/windows where things are totally clear — the proverbial veil is lifted (cliche but true!!!!). I wrote in my journal: "Is this how people feel???" Clear-headed. No dread. No despondency. No hopelessness. No severe agitation and rage. All I have to say is, if that’s what it feels like *not* to be in withdrawal or severe “poop-out,” then SIGN ME UP.

 

How much time one saves when actually feeling good! I truly can’t overemphasize how much easier life is when this is the case! 

 

I’m glad I’ve enjoyed recent windows instead of “getting things done.” Unfortunately you all know what those Groundhog Day mornings are like—back to withdrawal waves. I recently wrote in my journal, “I wish I could wake up where I left off last night!!” 

 

During the wonderful, full windows, my worry about “wasting time” in WD dissipates, because because I have the perspective of how much this is bringing my life back to me. 

 

WDnormal baseline has improved incrementally from last year. Clearer thinking on the whole. Baseline of frequent confusion has improved and I can now regularly understand things and also explain things. I don’t think many people can truly appreciate what a miracle it is to understand basic communication.

 

I still get enough dp/dr, confusion, and other wd symptoms that I’m not able to show up in life consistently. 

 

Very thankful for windows. Very eager for waves to heal. Change of month and change of season (and things like this being Fourth of July weekend, a landmark in my withdrawal and recovery) are difficult because it reminds me how long this is taking. I try not to think about timelines. I try not to blame myself. (I wouldn’t blame anyone else for their withdrawal. I just sometimes—infrequently—wonder, am I unknowingly doing something to make this worse?, or am I somehow making this up in my head? I know I’m not.) I always stay safe — I have a great therapist, and at least one family member who truly, truly believes this is withdrawal. I can’t imagine how hard this is on her.

 

As an illustration of how very neurologically- (versus cognitively) based this is, I recently had a day where I woke up and felt okay-ish, then throughout the day began feeling really clear and happy to be alive!!!!... then later that night extremely, extremely despondent and hopeless. Nothing bad happened or anything. Sooo unnerving to say the least. (When the extreme despondency hits, it affects cognition, too--making it hard to engage with the various notes and quotes I've left myself for this purpose--to hang on, just hang on, it is absolutely withdrawal and it will absolutely get better. But look, I always make it through.)

 

Thanks for reading. At some point I will do more frequent, less-novel-like updates!!!! I’m still in some cognitive fog and am hoping to spend a few days away from the computer, so if you don’t hear from me, that is why. (I'm nervous with my cog fog that I'll miss someone's reply--if that happens, I promise it is nothing personal.)

 

Take care, everyone. ❤️

[Rabe]

SkyBlue that is SO lovely to read....that you are seeing a light in the tunnel...spreads hope!!!💜

[brassmonkey]

Such a wonderful update SkyBlue.  It's so clear that you've come such a long way and have improved greatly since you arrived.  It's not long now just a few more cuts and you'll be to a point where you can make the jump in a safe manner.  Keep up the good work and you'll be there before you know it.

 

((((((((((((((HUGS))))))))))))

 

Brass

[Gridley]

Great update, SkyBlue.  You are an inspiration.

[SkyBlue]

A long overdue "thank you" to Rabe, Brass, and Gridley! : ) 

[SkyBlue]

A mixed bag this week: 

 

1. Celebrating that I am now on 0.3 mg Paxil! ! ! ! ! 

 

2. I can confirm 100% that, as many have said--Brassmonkey comes to mind, but others have stated this-- dp/dr is absolutely the brain healing and "protecting us" from the work and repair it's doing. Last Thurs I had a wave of strong dp/dr, and the next day I was clearer than I have been in a long time. This clarity was worth more to me than precious gemstones. 

 

I was truly hoping this would be my "forever window," lining up nicely with three years from my initial (almost) cold-turkey. 

Wouldn't that have been nice? But -- 

 

3. Got slammed starting yesterday w/a wave of meaninglessness, what's the point of going on, needle/bee-sting sensations, super on edge, cognitive fog, and severely and urgently not caring about anything. I know I'm lucky to improve as much as I have, I know that. I'm so lucky to have had this recent window (even thinking it was the Forever Window). I know it will get better. In the midst of all of that, though, I do just want to tantrum/shout that this it is beyond frustrating to fall out of my lifeboat again. Can I get an "amen" from the crowd????? 

 

I'm going to hold at 0.3 for a while. It's working well to use the microliter syringe to continue to reduce at approx 2% per time, as little as 0.005mg change: 

 

June 30... 0.33mg

July 7... 0.325mg

July 11... 0.32

July 20... 0.315

July 24... 0.31 mg

July 28... 0.305

July 31... 0.3!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Thanks for listening to my rant. : )  Hope you're all doing well or at least okay.