Rachelina: in crisis and afraid I'll never get off Paxil

[Songbird]

5 hours ago, bubble said:

Songbird was successful with her switch but I remember more people who were not so lucky.

 

You're right, Bubble, I was lucky.  However I did end up on a full dose of another AD and had to begin tapering all over again.  I really didn't want to do it but was desperate as I was non-functional and unable to eat without attacks of severe akathisia.

 

Rachelina, I think you've done so brilliantly to taper down to such a low dose - honestly, it's just tiny!  I think Bubble has the right idea about holding longer.  Continuing with a taper when under stress or not stable is a recipe for trouble.  A good long hold could allow your system to catch up with changes and then get nice and stable.

[Rachelina]

On 6/7/2019 at 4:34 PM, bubble said:

Hello Rachelina, I hope you don't mind me sharing some insights. What I quoted is a mistake we all frequently make: feel a bit better and then reduce. Planning cuts, however small, according to a calendar instead of by careful observation of symptoms is another thing that gets us into trouble. People who are successful in their tapers hold in times of stress and in general have periods of long holds. It's very likely CBD oil caused a bad reaction and all subsequent cuts were too much for your CNS. I just felt like pointing at other possible causes of your struggle rather than impossibility of tapering Paxil.

 

Songbird was successful with her switch but I remember more people who were not so lucky. Very often it happens that the new drug doesn't cover WD from the first one, sometimes it causes an adverse reaction and we see people ending up on two drugs because they need to reinstate the first one (Flowers comes to my mind). All in all, a very risky and potentially messy situation...

I love this approach. I think it should help you stabilise together with holding (and even with a potential updose).

 

Thank you Bubble. Your warning about the risks of switching is well taken. It would be a last resort only. And I'm encouraged by your view that there's a lot going on here besides the impossibility of getting off Paxil.....that thought was causing me a lot of additional anxiety. 

 

And yes, I will hold! My only issue with holding is that I feel like I'm at a point in my taper where dosage variation from day to day could be causing me problems. I went into some detail about that on the previous page, three years ago, and I never did find a real solution. I wrote that I was afraid that since a drop only comes out of the syringe every five lines, and a drop is equal to .1 mg, then my dose could be varying as much as .1 mg from day to day. So making a .02 mg drop seems unlikely to make a huge difference in how I'm feeling, although of course many such drops over time will make a difference. I don't think my dose is actually varying by quite that much....for that to happen I would have to sometimes take a dose where a drop was about to fall out of the syringe, and other times take it when a drop had just fallen out. But I don't do that; I keep trying until I get it so the liquid is just starting to bulge out of the tip of the syringe. It's impossible to be exact though and I know there's still a lot of variation, which worries me. What if it's really the variation that's causing all this? At higher doses it didn't make much difference but now the variation is a much larger percentage of my dose. It makes me eager to reach a time when I will have zero daily dose variation, because my dose will be zero. Still, I do see that since I am in a crisis a longer hold does make sense right now. 

 

I just came across this great book at the library, called Burnout: The Secret to Unlocking the Stress Cycle, by Emily and Amelia Nagoski. As I read it I'm thinking more and more that a big part of what I'm going through is actually major burnout as a result of prolonged severe stress. It's also making me hopeful that I'm going to be able to find ways to deal with the stress. Definitely recommended for anyone struggling with stress, though it's mostly geared towards women. 

 

And thank you for your encouragement, Songbird! It helps. 

[Rachelina]

9 hours ago, ChessieCat said:

 

According to the manufacture undiluted prescription Paxil brand liquid can be kept until the use by date.  (Seroxat label says 1 month after opening).  See below:

 

 

 

Once it is diluted (ie diluted prescription liquid) 4 days to a week is a reasonable limit for keeping homemade liquids (BrassMonkey's response).

 

If it was me I wouldn't keep it for longer than 4 days because of the growth of bacteria and I'd also be concerned that there might be some degradation of the drug so that the dose amount might change.

 

Thank you so much for your help, Chessie Cat!  But I'm disturbed you found a label that says the use by date is one month after opening. My liquid comes with a pharmacy label that says to discard one year from the day they filled the prescription. Every single medication says the same thing. But surely if Paxil really did go bad sooner they would know this and make the "discard after" date reflect this?? Also I don't even know what "after opening" means because I get the liquid in pharmacy bottles that I assume they're filling out of a big jug or something, and who knows how long that has been opened. I guess I can call the pharmacy to clarify all this. And 4 days sounds about right to me too. Thanks again. 

 

Thank you too ktp, that gives me a basic idea of how to get started. 

[ChessieCat]

This is the link where DeterminedAnna posted a photo of her prescription box showing that Seroxat is to be discarded one month after opening.

 

The information about the Paxil oral liquid was directly from the manufacturer in response to my email enquiring about the disposal after opening date.

[Boris]

Wow when I tapered for a couple of years with the liquid Seroxat I kept it for months and months after opening. Didn't know this.

[Rachelina]

On 9/1/2019 at 4:10 AM, Boris said:

Wow when I tapered for a couple of years with the liquid Seroxat I kept it for months and months after opening. Didn't know this.

 

Me too Boris. Do you think it caused you any problems? I've been tapering with liquid since 2015 and most of that time I've been OK. I do keep it refrigerated  which might help it last longer. 

[Boris]

I'm not sure, I was on 5mg for ages then took 2 years with the liquid to get off. I still had 4 month of bad withdrawals after that and other stuff. I wasn't very strict though with my taper, liquid seemed fine but the chemist told me to just keep it out of the sun in a cool cupboard.

[ChessieCat]

  Rachelina posted this elsewhere:

 

Diluting concentrated Paxil liquid:

 

7 hours ago, Rachelina said:

I just realized it's been about a year since I started diluting my liquid Paxil, so I thought I'd give a quick update. It's going great. The solution that I make is ten times less concentrated than the original liquid, which means my measurement is ten times more accurate. That is huge. Liquid Paxil is so concentrated that any tiny variation in the amount taken, which is impossible to avoid with syringes, makes a big difference in the dose you are getting. This makes consistent daily dosing almost impossible, and I think that was a factor in how badly I was doing last year before starting to dilute. The other advantage of diluting is that I get to make drops as small as I want them, whereas before the smallest drop I could make was .02 mg.

 

I knew for years that I was not getting accurate doses due to the high concentration of the liquid, but postponed diluting because I was afraid to change anything, afraid I wouldn't be able to figure out how to actually do it, afraid I would get the math wrong. Someone in this thread kindly got me started, and actually, it's totally easy. It's hardly any more work than before.  So I just wanted to recommend dilution to anyone tapering a highly concentrated liquid medication. It will be vastly more accurate, which becomes more and more important the lower you get in dose.

 

 

[ChessieCat]

@Rachelina

 

Could you please provide an update on how you are now?  Thank you.

 

On 11/7/2020 at 8:23 AM, Altostrata said:

This is such a vital community because members help each other. It wouldn't be what it is without that mutual kindness and attention.

 

One of the things that's very important to each person here is knowing that healing is possible. Please don't just go away when you feel better! "Pay it forward" by updating your Intro topic with your progress and come back to post your success story when you are finally clear of all those awful symptoms.

 

Nothing is more valuable to the community than seeing how recovery happens. You have lots of people hoping you'll get better. Please let them know when you do.

 

 

[Rachelina]

I was a little confused but I see you have moved my post from the liquid tapering topic to my own topic. Sorry, I just thought it would be mainly of interest to people tapering with liquid. But thank you for encouraging me to post an update! That is a great quote from Altostrata; I totally agree. It's not really time for my big positive update though; I'm still really struggling but I do think it is mainly stress more than withdrawal. I've posted before that my family life is stressful, and since the start of the pandemic it's become about ten times worse, yet I'm still doing better than last year. And I attribute that in part to the consistent daily dosing that I now get as a result of diluting my liquid Paxil, as I described above.

 

So although life is extremely hard right now I feel more optimistic than ever about my ability to get off Paxil. I've had so many failed tapers and updoses and I feel like this time I'm actually going all the way to zero. For the first time I actually feel confident that that's possible. So I'm just going slow and steady, and holding whenever I need to. Are any badges given out for the longest taper? If I can finish my taper within two years as I'm hoping, that will have been 15 years. I know Ladybug and Songbird have been at it at least that long. What a crazy journey it's been. I really appreciate all the support available at this forum and look forward to posting more positive updates.

[LostInCanada]

I think you are amazing sticking with it. Any suggestions for me. Trying to get stable after CT. Dealing with waves and my most hated symptom nausea. Keep up the good work.♥️

[Rachelina]

Hi Lost in Canada, I wish I had some great suggestions for you, but all I have is empathy. I'm sorry you're struggling. These damn drugs. 

 

I can't believe this but I'm actually coming to the end of my taper, after 16 years of trying to get off Paxil. I'm on .01 mg, which I had always thought would be my last dose, but there are 4 more tiny lines on the syringe so I think I'm going to make those last 4 drops, down to .002 mg. I am so nervous about making that final drop to 0! Anyone have any words of wisdom on how to manage the end of a very slow taper? I was looking through some old posts here and noticed that Brassmonkey (one of my tapering heroes!) jumped off at .016 mg. That was encouraging to see. I wonder if it was because when you get this low, the dose variation from day to day gets to be huge and it's better to just stop. 

[LostInCanada]

@RachelinaI am so happy for you. I wish I was even stable so I could taper. I don't know what stable would even look like. I think if you are confident going even lower it will only help but maybe @brassmonkeywould know better. ♥️

 

[LostInCanada]

@RachelinaI am so happy for you. I wish I was even stable so I could taper. I don't know what stable would even look like. I think if you are confident going even lower it will only help but maybe @brassmonkeywould know better. ♥️

 

[brassmonkey]

@Rachelina  Looks like you are doing great at your taper, good work. My calculated target Exit Dose for Paxil is 0.01mg. So, you could make the jump at any time. If you can and want to taper further is a good idea. Just listen to your body, it will tell you when.

 

I tapered using the dry cut method, so making up those tiny doses was a real pain. At the time the prevailing logic was to jump at 1mg, but everyone I saw doing that had real trouble post "0". I wanted to go as low as possible, but my body finally said, "enough of this already just make the jump". I was surprised that at even that small dose there were symptoms that appeared after the jump. Quite manageable, but they did appear.

 

Best of luck.

[Rachelina]

Thank you Brassmonkey. I'm very excited to hear that I am at your targeted exit dose! I will hold here for a bit, and then I think it would be in keeping with the Brassmonkey slide version I've been doing, to make those last tiny drops relatively quickly and then a nice long hold on the whole number - which in this case is 0. 

 

LostInCanada, I think stable is a relative term. My mental and physical health is far from perfect, and my "stable" might not look like anyone else's, but it's stable enough for me. I have a good sense of when I'm getting off balance and then I pause my taper until I'm back to my version of stable. Hope you can find your version soon!

[Rachelina]

Hello all, updating to report that I took my final dose of Paxil on Sunday 9/3. I didn't know at the time it would be my last dose. I was on a four-night camping trip, and the last morning, yesterday, I forgot to take my dose. Later when I was swimming in a gorgeous lake, I felt so joyous and free and thought, today is my Freedom Day. And decided not to take the dose. So Labor Day will always be Freedom Day to me now. 

 

I admit I'm nervous that I'll have some terrible crash. But I was only taking less than one drop of highly diluted liquid Paxil, really just the tiniest bit of moisture. Mostly I think I will be OK. 

 

I could not have done it without the support on Surviving Antidepressants - both the moral support and community, and the technical advice about diluting, which was the only way I ever could have gotten off.  I made a small donation to SA in celebration and thanks. Thanks so much to all of you! 

 

[LostInCanada]

@RachelinaI am so proud of you and it gives me so much hope. Tysm❤️