LostInCanada: Need help and direction to taper off Paroxetine

[Emonda]

Wishing you well, strength and much perseverance, LostInCanada. You will prevail!

[TreeFrog]

Hi, @LostInCanada, just thought I'd say hello. I'm sorry to hear what you are going through.

 

My doctor took me off 60 mg of cymbalta over a year ago, in just 4 weeks, and I suffered liked the damned as well. Then I reinstated citalopram (the SSRI I was on before cymbalta) on my own advice, after much agonizing. I've been on 15 mg citalopram for over a year now, and still experiencing withdrawal symptoms, mostly intense anxiety. Feel like I dug myself a big hole, but it is what it is now.

 

Like you, I want to start a taper but have been holding off, hoping I can stablize more than I have. It's hard because of stress from physical problems and aging parent issues.

 

Wishing us both hope and healing. Sooner or later, we will get off these drugs!

 

Tree Frog

[Emonda]

How are you doing @LostInCanada?

Still in a wave, or are you emerging out the other side?

 

I hope all is well.

[LostInCanada]

@Emonda still in it but the nausea is a bit better... trying to manage the stress and exhaustion of it...sucks when sleep is so broken. How are you?

[LostInCanada]

Shep had wrote this on another thread..... If you reinstated at too high a dose, your nervous system may be hyper-reacting to the drug now. 

Since I know I reinstated too high at 5mg is holding at this dose doing me more harm or good. I am in my sixth month. This wave just makes me question everything...

[Chompoo]

@LostInCanada so sorry you are suffering. Can understand why you're frustrated - six months is a long time. I hope you stabilise soon!

[Emonda]

10 hours ago, LostInCanada said:

nausea is a bit better.

Got to celebrate even the small improvements @LostInCanada! Just keep going 🙏

 

10 hours ago, LostInCanada said:

How are you?

After a rough 4 or 5 weeks, last week was actually quite good. It must be one of those 'windows' I've read about 🙃 

[Go2zero]

So sorry to hear how you are dealing with this. Lots of the members here reinstated too high and sometimes too  often. Just because we did not knew then. Often because we were advised so by doctors. And we believed them... 

 

It happened quite a few times to me as well. I stopped escitalopram after "only" 1 year (in 2008) . I got suicidal ideation (which I never had before). And was advised to start again, which I did. It took an extreme long period to give some stability (at least 1 year).

 

In 2010 I stopped again (tapered over some months). It went well, but after 3 months I started having symptoms like suicidal ideation, heart palpitations and extreme nausea. I was advised to start again. I did, but it took more than 1 year to find some stability again. Lots of symptoms physically and mentally. So the doctors advised me to play around with the dosages, to find the right dosages for me.

 

With the knowledge I have now, all this stopping, starting, changing dosages must have sensitised my nervous system in such a way, which made it even more difficult to taper every time I tried.

 

Then 3 years later, I tapered over a period of 10-12 months. That should be enough I thought. Not knowing the extreme power of these drugs at the most extreme low dosages. So with the knowledge from now, I jumped at a too high dosage (although it seemed like nothing).

 

I did very good for 3 months (the famous 3-5 months...). I never felt so good as then. And after that, I went straight into hell! 

 

I did not want to start the medication again. I still was not aware then of the fact that I was dealing with withdrawal instead of relapse. It was the worst period of my life (this was 2014). I was thinking of going inpatient. But I did everything not to do so. In the end I started the medication again. First only escitalopram. It did not do anything, whereas the first time I took it in 2007, I felt effects (after a few hours). Later I also reinstated Wellbutrin, since I felt no relief at all.

 

Again it took around 1 year to stabilise after reinstating. 

 

Somewhere in 2016 I started to see patterns in what happened to me, after tapering several times. I started to do more research on that. And more and more I came to the conclusion that my heavy symptoms had to do with withdrawal.

 

And even then I made a mistake (in hindsight) by bridging to Prozac in 2019. I went through a full withdrawal of escitalopram and needed to adapt to prozac as well. Again in hell!

 

But after a long stabilisation (around 10-12 months) things slowly got better again.

 

I often had my doubts. And I still have them now and then (just sometimes, and less and less). Because it is so difficult to believe that these drugs can do so much harm to us. Doctors and family most often do not believe us. Which make it more difficult to believe ourselves. When in withdrawal we are often extra vulnerable for negative thoughts form ourselves and ideas from others.

 

Therefor I am so grateful I found this forum.  I found lots of people here who suffer the same symptoms. Who are having the same experiences. It became clear to me that I am one of many! It is so good to share our experiences so that we can help others and ourselves.

 

The messages I want to give you with this long story is:

 

- That it can take very long to stabilise (in my case at least 1 year). 

- Doubting is common and it happens to lots of us.

- We have to be extremely careful with dosage changes or bridging to another drug

- Believe in your self and in your own chosen strategy for dealing with your tapering.

- You will stabilise. Time is the best healer! Be patient and love yourself!

 

You are having the right mindset! That is clear from all your messages to the members here! You know how to do it. 

Edited May 13, 2023 by Go2zero

[LostInCanada]

@Go2zerothank you for that perfect message. Just what I needed.👍

[Emonda]

How are things progressing @LostInCanada. I hope you are soldiering on ok.

[LostInCanada]

@Emonda thx for the message...I am coping. Trying to keep my stressors in perspective. Lots of deep breathing. How are you doing?

[Emonda]

Coping is good @LostInCanada! I appreciated what you mean by keeping stressors in perspective. I have this amazing ability to blow things out of proportion very quickly!

 

I, too, have been doing some breathing exercises...I found some on Spotify. They seem helpful. My wife says, "What are you doing". I respond, "Practising my breathing". She laughs 🙃

 

Me? I plan to make a 2% drop next week. It'll be the first drop in 7 weeks...I'm a little apprehensive, but I will keep reading about the experiences of others, which are reassuring. 

 

Every day is a day closer to long-term improvement.

[Blackbird17]

@LostInCanada did you ever get an answer as to whether you reinstated too high and are having a hyper-reaction to the drug? I am wondering about this question in my situation too given the awful symptoms I am experiencing and I don't know how to assess this

[LostInCanada]

@Blackbird17 just further up on this page go2zero commented

https://www.survivingantidepressants.org/topic/28498-lostincanada-need-help-and-direction-to-taper-off-paroxetine/?do=findComment&comment=644316

[LostInCanada]

@Blackbird17 my take away from it is even if I did, my body will have to work through it at this point. Stabilizing is my main need to set myself up for a successful taper.  I just hate that the drugs side effects are so magnified at times. 6 months consistent reinstatement at this point but still seeing improvement. We all deserve healing.🙏

[LostInCanada]

Just a shoutout to all the mentors and moderators who work hard to help us all keep it together. You have so much going on in your lives and still hold our hands so thank you. @Altostrata @Go2zero @RachelSusan @Carmie @getofflex @Onmyway @Gridley @brassmonkey @manymoretodays @Addax @Shepand more ❤️

[Carmie]

Dear @LostInCanada  You are such a sweetheart, thank you for all your amazing and encouraging posts on this site too. 
 

I hope you find some joy in your day☀️

[Soup]

It’s an amazing group of people here even in their own suffering they reach out a hand of hope and help

@LostInCanada you are very right and your words of comfort help to 

[Altostrata]

Thanks so much for your contributions to our community!

[Go2zero]

Dear @LostInCanada you have such a good heart. Thank you for all you help in this site. It is highly valued! 🙏 ❤️

[Emonda]

Hey @LostInCanada,

I am so happy to hear you are in a window...your longest one yet! That's such good news 🎉

 

I still remember the 1st window I experienced; it was like a sense of clarity of mind and calmness for a few hours one afternoon. Those windows encourage you to keep pushing when things are tough.

 

Keep up the good work...you will succeed, and I look forward to reading your success story one day down the track.

[Go2zero]

That is great news @LostInCanada to read your are having a longer window. That is a real sign of healing. Your trust and persistence will help you further in your healing process.

[LostInCanada]

@Go2zero how are you doing? Any break from that wave yet?

[Go2zero]

1 hour ago, LostInCanada said:

how are you doing? Any break from that wave yet?

Hi @LostInCanada, I am very slowly improving. The wave seems to get lower bit by bit, but extremely slow.  I see and feel the (slow) improvement. Today suddenly an "attack" of eye migraine. I had this a couple of times in the last 4 years. I know now what it is, so it is not frightening anymore. And I know it stops by it self after some time.

 

I started to read a great book of Dr. Claire Weekes about anxiety and sensitised nerve systems. And how these two go hand in hand.

 

I wrote more about my ideas about this book in my own thread. You can find it here when interested:

 

https://www.survivingantidepressants.org/topic/23288-go2zero-getting-off-wellbutrin-and-prozac/?do=findComment&comment=646304

 

I find the book more than helpful in dealing with my withdrawal and anxiety.

 

[LostInCanada]

3 minutes ago, Go2zero said:

 

I started to read a great book of Dr. Claire Weekes about anxiety and sensitised nerve systems. And how these two go hand in hand.

I bought the book a few weeks ago. Some good points in there. Definitely will read your thread.

Glad the wave is lessening. Soon. 👍

[getofflex]

Lost in Canada, thanks for the shout out!  You are a big asset to this community.  

[Carmie]

Dear @LostInCanada, thinking of you and sending big hugs your way🤗💛

[LostInCanada]

Just an update. Since Friday been back to having the shakes in the early morning, anywhere from 2am-6am. When this happens I have increased bathroom trips. I assume it is cortisol. I have blackout curtains, get off devices by 8pm, have a yogurt, take melatonin, read hardcopy books for an hour, go to bed. I wake on average every 90 minutes. Sometimes get a 3 hour stretch. Can usually fall back to sleep unless dealing with the shakes. Before CT and withdrawal I couldn't fall asleep till after 3am and I would wake by 11am but would wake numerous times during that stretch. It's just been exhausting for so many years. 

Been dealing with added stress so that hasn't helped.

I do feel improvement with burning feet and crying, still struggling with conversation...it takes too much energy, and anhedonia has gotten better but is still very much here.

Patience and acceptance need to be my best friends.

 

[Emonda]

Good to hear from you @LostInCanada, although I wish you were still in that window.

 

9 hours ago, LostInCanada said:

increased bathroom trips

 

I've often wondered about this. Do I wake up multiple times to go to the toilet because of WD/anxiety, or could it be because I am a male approaching 50 🧐 Who knows?  I do know that broken sleep is unhelpful during the recovery phase, so I hope that it improves for you in time. I find very quiet, calming background music helps me when awake at 2am.

 

9 hours ago, LostInCanada said:

I do feel improvement with burning feet and crying

 

9 hours ago, LostInCanada said:

anhedonia has gotten better

 

You've got to celebrate the small improvements LostInCanada!

 

As you said, patience and acceptance need to be our friends. Keep up the good work. You have a great attitude, and despite your own WD, I notice you often encourage others in their posts...so thank you!

[Chompoo]

@LostInCanada praying for better days ahead 🙏

[LostInCanada]

@Chompoo thank you. Better days for us all.❤️

[Carmie]

On 6/7/2023 at 2:25 AM, LostInCanada said:

Just an update. Since Friday been back to having the shakes in the early morning, anywhere from 2am-6am. When this happens I have increased bathroom trips. I assume it is cortisol. I have blackout curtains, get off devices by 8pm, have a yogurt, take melatonin, read hardcopy books for an hour, go to bed. I wake on average every 90 minutes. Sometimes get a 3 hour stretch. Can usually fall back to sleep unless dealing with the shakes. Before CT and withdrawal I couldn't fall asleep till after 3am and I would wake by 11am but would wake numerous times during that stretch. It's just been exhausting for so many years. 

Been dealing with added stress so that hasn't helped.

I do feel improvement with burning feet and crying, still struggling with conversation...it takes too much energy, and anhedonia has gotten better but is still very much here.

Patience and acceptance need to be my best friends.

 

Dear LostinCanada, thanks for your update. I’m sorry about your early morning shakes. Mornings can sometimes be scary. I’ve had the early morning shakes in the past too. Good ol’ cortisol. This morning was really scary for me, not due to withdrawals, but due to my breathing, so claustrophobic. I try and allow myself to feel the scary feelings and then try and distract myself. I distracted myself by reading something upbuilding first thing this morning. 
 

That must be so frustrating waking up every few hours or so, I’m so sorry. I know yours is from your withdrawals, but for me I’ve found that not drinking anything many hours before bed helps me not to wake up as much. Many times I wake up pretty early too though and can’t go back to sleep. I slept until 6.30am today though, which was pretty good. 
 

You’re doing so amazing with putting in all the self care. Good for you! Do you wear blue light blocking glasses in the evening too, I put mine on around 7pm each night. 
 

Sending you hugs🤗

[AmitV]

On 6/6/2023 at 10:25 AM, LostInCanada said:

Just an update. Since Friday been back to having the shakes in the early morning, anywhere from 2am-6am. When this happens I have increased bathroom trips. I assume it is cortisol. I have blackout curtains, get off devices by 8pm, have a yogurt, take melatonin, read hardcopy books for an hour, go to bed. I wake on average every 90 minutes. Sometimes get a 3 hour stretch. Can usually fall back to sleep unless dealing with the shakes. Before CT and withdrawal I couldn't fall asleep till after 3am and I would wake by 11am but would wake numerous times during that stretch. It's just been exhausting for so many years. 

Been dealing with added stress so that hasn't helped.

I do feel improvement with burning feet and crying, still struggling with conversation...it takes too much energy, and anhedonia has gotten better but is still very much here.

Patience and acceptance need to be my best friends.

 

There are some meditation apps that can help you get back to sleep when you wake up. Mindfulness and meditation can be very helpful during this time. 

[LostInCanada]

@Carmie I been lax clipping on my blue light blocking glasses. Probably should get on that again. The shakes have settled the last couple nights..I think it was part of a little wave because I was overly emotional again. I think I am figuring out withdrawal normal and should be ready to start tapering soon. Just going to get some blood work done this week...vit d, vit b panel, cholesterol, sugars, calcium, mag. I want a baseline before I start the taper. Idk why...maybe peace of mind. CT was so bad with SI, dp/dr ...I understand when some say they have PTSD from CT. I pray I can navigate symptoms coming my way from tapering. 

You are such a sweetheart. I wish this was easier on you. ♥️

[LostInCanada]

@AmitV the weird thing is I can usually fall back to sleep quickly it is just the constant waking. I never get deep into rem...just wherever 90 minutes takes me. I had tried oxazepam years ago not knowing it was a benzo and zopiclone 7.5 mg and it didn't help at all. This sleeping crazy all started when the pharmacy gave me sertaline instead of paroxetine and I never noticed in 2016. I only realized this going through medical receipts this year.

[Carmie]

I’m glad to hear that the shakes have settled @LostInCanada, they can be scary when you wake up with them. I’m sorry you’ve been struggling so much emotionally. I give way to tears myself, but sometimes I’m too numb to do so. 
 

I hope that your blood tests are good. I’ve had so many blood tests done over the years that they sometimes have trouble trying to get blood out of my veins. They did the last few times. I used to have such good veins. 
 

Yes, I’m sure a lot of us have PTSD from what we’ve gone through with these meds. I know I do. I also know if I taper too quickly I can get Akathisia again, and because of that, SI. We have really been out through the ringer with these meds. It really is frightening. 
 

I wish you all the best when you taper again. Go extremely slow and see how you do. I can only taper by 1.5% at the moment, any quicker and the withdrawals get too severe. 
 

I hope you find a little something that makes you smile today💛