Schmeg82 Paxil withdrawal and taper after 21 years

[Schmeg82]

Hi there, 

I just discovered this website recently and I have found it helpful, I’d like to tell my own story and ask some questions as well.

 

i have been taking Paxil (generic form) 20mg for 21 years, i started it when i was 20 years old due to GAD and panic disorder.  Over the years i gained a lot of weight but did well on the med (or so I thought) so as I was pretty complacent I just stayed on it over the years.  
 

Within the last few years I started to get debilitating headaches and strange symptoms, after lots of testing I figured it was the Paxil.  My GP told me she hated Paxil and it’s time to come off of it by taking them every other day, then cutting in half and doing the same and so on….Even I thought that was a little fast so I asked the pharmacist and she said yes that would be fine.  I ended up going even slower than that on my taper but apparently that wasn’t even slow enough.  I tapered from 20-5mg over 5 months by cutting my pills in quarters.  All was well until I got to 5mg for a month or so and my vision started getting “shaky” along with nausea.  

The vision scared me, I went to 3 different eye doctors and specialists with perfect vision, which I knew it wasn’t.  My vision also occasionally doubles, looks foggy and I get trailing and after images.  This has been my scariest and most debilitating symptom.  After 2.5 months my vison is still distorted.  I’m loosing hope that it will ever get better.

 

my symptoms started getting worse, I starting having tremors and body jerks, I couldn’t even hold things properly.  Adrenaline was racing through me every morning along with bad twitches.  
 

 After realizing this was part of withdrawal and not an isolated eye issue, I went back to my GP and she told me to reinstate back to 10mg from 5mg.

 

the first week of reinstating I felt worse, if I ate I would get incredibly sick and my chest would pulsate, but if I didn’t eat I’d feel like I was going to pass out.  Those feelings did subside after a week of reinstating, however if I don’t eat every few hours I get racy and feel like my sugar drops fast.  It’s not as bad as it was.  The racy feelings and adrenaline rushes subsided a lot, every now and then I still have them but not as often at all.  
 

right before I reinstated I had horrible exercise intolerance, My heart rate would sky rocket just walking and I would feel sick, this went away shortly after reinstating.  My resting HR is usually in the 60s and it was consistently 90-100s with palpitations.  It is back down to normal again and I was even able to go for a short jog again.  I have been walking daily, some days are better then others, this past week I was very weak and felt sick, I didn’t walk for a few days.  My anxiety comes and goes, I still panic about my symptoms possibly being permanent.
 

I am now almost 5 weeks into my reinstatement of 10mg and I’m hoping and praying I will stabilize here and then begin to taper extremely slow again.  My biggest fear is my eye issues won’t subside, although some other symptoms have subsided and calmed down, my vision issues remain the same.  Is there any hope that my eyes will go back to normal? 
 

this whole journey has been the worst experience of my life and I’m here trying to find some hope.  
 

thanks for listening. 

[Carmie]

Welcome @Schmeg82

 

I’m sorry to hear what you’ve gone through. Unfortunately you tapered a bit too quickly. It’s recommended not to taper any more than 10% of the last dose per month. So the eye doctors said your eyes were fine from their perspective? I have had a few bouts of blurry vision, but they never lasted long. I’ve also had eye twinges.

 

Could you first of all please put in your drug signature. Just go to the top of the Introductions page to the thread entitled: “Please Start A Topic about yourself in this forum.” There’s a link in the first paragraph that will show you how to do the signature. Thanks💛

[Schmeg82]

I believe I changed my signature as you requested, is it correct? 

[Carmie]

Thanks for doing your drug signature @Schmeg82,

 

Feel free to pop over to other people’s threads if you’d like to have a bit of a chat.

 

Quite a number of people on here have found magnesium and fish oil to be of benefit if you’d like to try them. Because we can be hypersensitive to lots of things just start at a low dose of one and work your way up, then do the same with the next.

 

Sending hugs🤗

[LostInCanada]

@Schmeg82 welcome to SA. So glad you found us. 

On 4/6/2024 at 3:08 PM, Schmeg82 said:

My biggest fear is my eye issues won’t subside, although some other symptoms have subsided and calmed down, my vision issues remain the same.

This is very common. Just as your other issues are improving, this will too though it seems to be one that takes longer. After 1.5 years I still deal with it off and on. Great news your eyes are healthy. At my latest eye appointment the doctor said the issues I have are definitely neurological since my eyes are healthy like yours.

Stabilizing at 10 mg is wise. It can take a few months. 

It may be helpful to find a free online CBT course or check out Claire Weekes book Hope and Help for Your Nerves. Her basic method for dealing with anxiety is Face, Accept, Float and Allow Time. 

You are doing great. ❤️

[Schmeg82]

8 hours ago, LostInCanada said:

@Schmeg82 welcome to SA. So glad you found us. 

This is very common. Just as your other issues are improving, this will too though it seems to be one that takes longer. After 1.5 years I still deal with it off and on. Great news your eyes are healthy. At my latest eye appointment the doctor said the issues I have are definitely neurological since my eyes are healthy like yours.

Stabilizing at 10 mg is wise. It can take a few months. 

It may be helpful to find a free online CBT course or check out Claire Weekes book Hope and Help for Your Nerves. Her basic method for dealing with anxiety is Face, Accept, Float and Allow Time. 

You are doing great. ❤️

Thank you so much, that’s uplifting and helpful advice. I appreciate it a lot!

[Carmie]

Hi @Schmeg82

 

Just popping over to see how you’re doing today. I’m sorry you have problems with your eyesight. These withdrawals can cause a myriad of different symptoms. At one stage I had a burning mouth for ages, I didn’t even relate it to withdrawals, but it was a withdrawal symptom. It eventually disappeared. So many strange things can happen when we are coming off these meds, also when we are on them.

 

Do you have any healthy distractions that can bring you a little joy? I find doing EFT really good for dealing with emotions we go through, I use it a lot as I have serious health issues, unrelated to withdrawals. I shed lots of tears at times. 
 

Journaling can help as well, it feels good putting your thoughts down on paper.

 

Sending hugs🤗

[Schmeg82]

8 hours ago, Carmie said:

Hi @Schmeg82

 

Just popping over to see how you’re doing today. I’m sorry you have problems with your eyesight. These withdrawals can cause a myriad of different symptoms. At one stage I had a burning mouth for ages, I didn’t even relate it to withdrawals, but it was a withdrawal symptom. It eventually disappeared. So many strange things can happen when we are coming off these meds, also when we are on them.

 

Do you have any healthy distractions that can bring you a little joy? I find doing EFT really good for dealing with emotions we go through, I use it a lot as I have serious health issues, unrelated to withdrawals. I shed lots of tears at times. 
 

Journaling can help as well, it feels good putting your thoughts down on paper.

 

Sending hugs🤗

Thank you for checking on me!  I’ve been doing the best I can one day at a time right now, been going through a lot of different feelings and emotions just trying to keep it all together.  
 

my eye sight is worse the last few days but I’ve been very stressed about some life events I have to do like drive my mom to the city for a dentist appointment and I haven’t driven or been out in almost a month which I know isn’t good, I’ve been pretty isolated but I feel I need to push through and do some more things.  
 

I’ve been watching Dr. mark H and Angie peacock on YouTube and their videos have helped me cope and understand this process a lot better lately!  I watch whatever free therapy I can find online as well.  I’m trying to go for walks and stay active and busy so my mind doesn’t solely focus on how I’m feeling.

 

thanks again for checking on me! 

[Schmeg82]

I’m struggling today, I was feeling much better and started to do things that I used to do all the time, I went back to work (I do hair) and started a couple clients a day, I can’t do much more then that I get really sick feeling and have to lay down because my vision is still so out of wack.  Well today was really bad, it got so bad I felt like I couldn’t breathe.  In fact, any activity I do now my chest tightens up and I have no stamina.  I feel like I can’t breathe and I could possibly pass out if I don’t lay down or rest.  I used to be so active, I play softball and ride horses and I can’t do either of those activities anymore.  It’s been over 3 months now since I reinstated and was really hoping I’d make more progress, instead I’m getting hit with new symptoms.  Some symptoms have subsided, the tremors and shakiness have stopped but now I can’t breathe, even sitting in my bed sometimes it feels like I struggle.  I’m assuming this is common symptom of WD.  I’m hoping it passes soon as I’m losing all hope in healing.  

[Sebas]

On 4/7/2024 at 12:08 AM, Schmeg82 said:

Within the last few years I started to get debilitating headaches and strange symptoms, after lots of testing I figured it was the Paxi

The Paxil had probably pooped-out, that means it suddenly looses its effect after longterm use. Then you find yourself in a constant destabilised situation as if you were tapering which you were not.

 

On 4/7/2024 at 12:08 AM, Schmeg82 said:

My GP told me she hated Paxil and it’s time to come off of it by taking them every other day, then cutting in half and doing the same and so on….Even I thought that was a little fast so I asked the pharmacist and she said yes that would be fine

Taking paxil every other day as well as cutting creates volatile druglevels in blood. So bad advice but they just don't have a clue about the powerful halflife of paxil.

 

On 4/7/2024 at 12:08 AM, Schmeg82 said:

The vision scared me, I went to 3 different eye doctors and specialists with perfect vision, which I knew it wasn’t.  My vision also occasionally doubles, looks foggy and I get trailing and after images.  This has been my scariest and most debilitating symptom.  After 2.5 months my vison is still distorted.  I’m loosing hope that it will ever get better

It will eventually get better. My vision in 1 eye has been clear about 25% of the time for the last years. You will know when you become more stabike when your vision improves so use it in your advantage. No further medical investigation needed as @LostInCanada already mentioned.

 

On 4/7/2024 at 12:08 AM, Schmeg82 said:

My heart rate would sky rocket just walking and I would feel sick, this went away shortly after reinstating.  My resting HR is usually in the 60s and it was consistently 90-100s with palpitations.  

Been there, done that. Tons of times. Just saying this for reassurance.

 

On 5/3/2024 at 10:52 PM, Schmeg82 said:

I can’t do much more then that I get really sick feeling and have to lay down because my vision is still so out of wack

Laying down is the best possible way to calme your CNS. Consider informing your colleagues or boss about current circumstances. No details just in general.

 

On 5/3/2024 at 10:52 PM, Schmeg82 said:

It’s been over 3 months now since I reinstated and was really hoping I’d make more progress, instead I’m getting hit with new symptoms

It would normally take up to years from 20 to 10 mgai so 3 months of withdrawal is relatively short. You have been forced to go the short but hard way down (and thankfully up again). Symptoms will fluctuate until CNS settles down after a while, also due to other daily influences (food, stress, chemicals etc.). On this site you can read more about the windows and waves pattern of stabilisation. Hairsprays for example can be a chemical trigger, as well as alcohol, chocolate, caffein, other medicines and others.

 

We're here to help by experience. 

Bye

Sebas

 

[LostInCanada]

 

 

This is a very helpful video explaining the role of waves and windows. ❤️

 

[Schmeg82]

19 hours ago, Sebas said:

The Paxil had probably pooped-out, that means it suddenly looses its effect after longterm use. Then you find yourself in a constant destabilised situation as if you were tapering which you were not.

 

Taking paxil every other day as well as cutting creates volatile druglevels in blood. So bad advice but they just don't have a clue about the powerful halflife of paxil.

 

It will eventually get better. My vision in 1 eye has been clear about 25% of the time for the last years. You will know when you become more stabike when your vision improves so use it in your advantage. No further medical investigation needed as @LostInCanada already mentioned.

 

Been there, done that. Tons of times. Just saying this for reassurance.

 

Laying down is the best possible way to calme your CNS. Consider informing your colleagues or boss about current circumstances. No details just in general.

 

It would normally take up to years from 20 to 10 mgai so 3 months of withdrawal is relatively short. You have been forced to go the short but hard way down (and thankfully up again). Symptoms will fluctuate until CNS settles down after a while, also due to other daily influences (food, stress, chemicals etc.). On this site you can read more about the windows and waves pattern of stabilisation. Hairsprays for example can be a chemical trigger, as well as alcohol, chocolate, caffein, other medicines and others.

 

We're here to help by experience. 

Bye

Sebas

 

Thank you for all your helpful advice, I’ve really been struggling this last couple weeks as I’m in a terrible wave.  My chest and throat have been very tight, I can’t do much more then walk right now without feeling sick and worn out, feels like I have asthma and can’t breathe.  I’m just hopeless right now.  I know this is all part of healing but it’s so hard to watch your regular life pass by every day.  My vision is still bad, if not worse, I don’t know how much longer I can go on being strong like this.  I truly thought after reinstating that after 3 months I would feel better but like you said,  I was on this 21 years so I’m sure I need a lot more time.   I’m just having a very bad day.  Thanks again for all your advice.

[Schmeg82]

2 minutes ago, Schmeg82 said:

Thank you for all your helpful advice, I’ve really been struggling this last couple weeks as I’m in a terrible wave.  My chest and throat have been very tight, I can’t do much more then walk right now without feeling sick and worn out, feels like I have asthma and can’t breathe.  I’m just hopeless right now.  I know this is all part of healing but it’s so hard to watch your regular life pass by every day.  My vision is still bad, if not worse, I don’t know how much longer I can go on being strong like this.  I truly thought after reinstating that after 3 months I would feel better but like you said,  I was on this 21 years so I’m sure I need a lot more time.   I’m just having a very bad day.  Thanks again for all your advice.

Actually I reinstated March 5th so it’s been 2 months on 10mg.   

[Schmeg82]

18 hours ago, LostInCanada said:

thank you for that!  I definitely don’t feel like I’m “healing” but I know I am, this is just the hardest experience of my life but I’m trying so hard to stay positive.  

[LostInCanada]

@Schmeg82 try to concentrate on what you can do and not what you can't do. Find things that bring some joy and build on that. For me it is a daily walk, cooking and reading. Definitely a lot more low-key than life before cold turkey but I am trying to stay grateful with my simple routine. ♥️

[Schmeg82]

2 hours ago, LostInCanada said:

@Schmeg82 try to concentrate on what you can do and not what you can't do. Find things that bring some joy and build on that. For me it is a daily walk, cooking and reading. Definitely a lot more low-key than life before cold turkey but I am trying to stay grateful with my simple routine. ♥️

I agree, I have to try and stay positive.  I have a barn full of horses I have to take care of every night and I’m finally able to do that on my own, I have walked the dogs as much as my body lets me in the evenings.  I do enjoy reading and just this month I started reading again.  Thank you 

[LostInCanada]

13 minutes ago, Schmeg82 said:

horses

 

15 minutes ago, Schmeg82 said:

dogs

I live in the city in an apartment that doesn't allow pets so I am super jealous. As a kid I rode alot at a neighbour's. And in Calgary Alberta we had sled dogs.

Thankfully I am a block from the ocean so I have seals, whales and other creatures but you can't cuddle with them. 🐳🦀🦑🦦

18 minutes ago, Schmeg82 said:

Thank you 

You are very welcome 

 

18 minutes ago, Schmeg82 said:

started reading again.  

It's been a great distraction for me. I keep it light and fun. 

[Schmeg82]

15 minutes ago, LostInCanada said:

 

I live in the city in an apartment that doesn't allow pets so I am super jealous. As a kid I rode alot at a neighbour's. And in Calgary Alberta we had sled dogs.

Thankfully I am a block from the ocean so I have seals, whales and other creatures but you can't cuddle with them. 🐳🦀🦑🦦

You are very welcome 

I was barrel racing before all of this started, my last barrel race was February 2nd until my symptoms got to bad.  Now I can at least go out and enjoy my horses, I have hopped on bareback and just walked one of mine around when I’m in feeling really good and that makes me feel on top of the world.  But still much I enjoy petting and cuddling with them lol.  I bet it’s a beautiful ocean up there, we don’t have many big whales but here in Florida lots of sharks and dolphins.  
I love watching the Calgary stampede online and the rodeos over there look like so much fun! 
 

as far as reading I like fantasy books, they really take my imagination far away.  

[LostInCanada]

15 minutes ago, Schmeg82 said:

hopped on bareback

Nothing like it... it's the little moments that can make such a difference.♥️

[Schmeg82]

8 minutes ago, LostInCanada said:

Nothing like it... it's the little moments that can make such a difference.♥️

I’ve been reading your journey on your thread, I see it’s been about a year now? Did you stabilize on the 5mg before you started to taper again? I’m at 10mg (reinstated) it’s been two months today.  

[LostInCanada]

2 minutes ago, Schmeg82 said:

Did you stabilize on the 5mg before you started to taper again?

Yes and it took about 6-7 months. My CNS is really sensitive so I am tapering as slow as a snail but hopefully with time my CNS will settle. We both have been on this drug a long time so being patient is our only choice.

[Schmeg82]

11 minutes ago, LostInCanada said:

Yes and it took about 6-7 months. My CNS is really sensitive so I am tapering as slow as a snail but hopefully with time my CNS will settle. We both have been on this drug a long time so being patient is our only choice.

yes, 21 years!! Eeekkk.  My biggest issue is my vision, it’s not letting up at all, it’s very bothersome to me but I’m trying to live with and accept it.  I know I’m very early in this process at only 2 months of reinstating.  I also do hair and have had to go back to work 2-3 days a week which has been extremely hard, but I don’t want to loose my horses.  My husband has been paying for majority of everything else, I know I’m stressing my nervous system by working so I hope that’s not delaying my healing.  Physically it’s been very hard to work more than a few hours so I don’t push myself.  Anytime I have down time I lay down and read or play games on my phone, that relaxes me.  I’m SO glad to hear you found stability after reinstating and are starting to taper again.  I’m not messing with my dose at all for a very long time.  I do hope I haven’t “kindled” as I’ve read, I don’t think so though, as I’ve seen improvements after being on more again.

[LostInCanada]

42 minutes ago, Schmeg82 said:

My biggest issue is my vision

Honestly since I did the optometrist and tests and then more tests at the opthalmologist, my issues have increased. That at least shows the neurological component but it is so annoying. I wish I hadn't went. Hindsight....

 

45 minutes ago, Schmeg82 said:

hope that’s not delaying my healing

It's a hard balance. 

46 minutes ago, Schmeg82 said:

do hope I haven’t “kindled” as I’ve read

It doesn't sound like it thankfully 👍

[Schmeg82]

1 hour ago, LostInCanada said:

Honestly since I did the optometrist and tests and then more tests at the opthalmologist, my issues have increased. That at least shows the neurological component but it is so annoying. I wish I hadn't went. Hindsight....

 

It's a hard balance. 

It doesn't sound like it thankfully 👍

Ugh I’m sorry, I hope mine doesn’t increase anymore, it has already and I hate it.  I believe it is what makes me so nauseous and sick, my body is constantly trying to keep up with my eyes.  I’m not messing with mine or anything anymore for a while.  

[Schmeg82]

Today is by far one of my worst days, I’m in a terrible wave.  I have zero energy, I feel like I can sleep all day and all night.  I can’t concentrate well, I’m shaking a bit again also.  My vision is worse and my eyes are playing tricks on me.  I had enough energy to make some eggs and toast and sit down for breakfast then went right back to bed, I feel so awful.  I’ve been like this a few days and getting worse, I hope it passes soon.

[LostInCanada]

@Schmeg82 just remember the video of waves and windows. It's your body recalibrating like the Rubik's cube. Be gentle with yourself. It's okay to do nothing. ♥️

[Schmeg82]

38 minutes ago, LostInCanada said:

@Schmeg82 just remember the video of waves and windows. It's your body recalibrating like the Rubik's cube. Be gentle with yourself. It's okay to do nothing. ♥️

Thank you.  I’m just glad I can still focus on reading, I’ve spent the whole day in bed today.  

[LostInCanada]

9 minutes ago, Schmeg82 said:

glad I can still focus on reading

It truly is a gift despite the after images and blurring and floaters...lol

I have been reading all morning as well. 👍

[Schmeg82]

Yes and sometimes the words look wavy or like they’re moving, so frustrating.  I hope that goes away one day 

[LostInCanada]

@Schmeg82 stopping by to see how you and the horses are doing? I hope you are getting back into a comfortable pace since adding some work to your schedule. Time is in your favor. Continue to be kind to yourself. ♥️

[Schmeg82]

35 minutes ago, LostInCanada said:

@Schmeg82 stopping by to see how you and the horses are doing? I hope you are getting back into a comfortable pace since adding some work to your schedule. Time is in your favor. Continue to be kind to yourself. ♥️

Thank you for checking on me!!! Life’s been rough as you know but I’ve been pushing through, a lot of my symptoms are better (my tremors, shakiness, anxiety) but my eyes are still bothering me bad, still have the flashing:shaking vision and light sensitivity.  I had another eye exam yesterday and all was well so we know it’s still withdrawal or the medication causing it - im guessing withdrawal since that’s when it started.  I have been driving myself to work every day again which is liberating to have that back!  I do get nauseous and dizzy at times from my vision but like I said im pushing through!  The horses are doing well, it’s getting very hot down here though so no riding recently!  Hope all is well with you - thanks for checking in!

[LostInCanada]

On 5/30/2024 at 11:12 AM, Schmeg82 said:

been pushing through,

Good for you

On 5/30/2024 at 11:12 AM, Schmeg82 said:

.  I had another eye exam yesterday and all was well

At least you know it isn’t any physical issue. Just so frustrating to deal with.

On 5/30/2024 at 11:12 AM, Schmeg82 said:

been driving myself to work every day again

That is fantastic. I haven’t driven since my cold turkey, over 1.5 years. That is great progress. 

 

On 5/30/2024 at 11:12 AM, Schmeg82 said:

Hope all is well with you

Did a dose drop with some increased symptoms but have pretty much levelled out. The dizziness seems to be hanging on. Way better than I was even 6 months ago. Every little step is a win for us both. 👍❤️🙏

[Schmeg82]

Hi there, I’d like to check in and let you all know what’s been happening lately.  
 

it’s been 3.5 months since I reinstated to 10mg and my symptoms have been getting progressively worse.  (This is  5 months total since WD symptoms started in January).  
 

my vision is much worse, everything makes me dizzy/nauseous feeling, especially patterns, low lighting, pretty much anything at this point.  The vision is shaking worse then normal too, and I’ve been getting flashes of light and flashes in lower lighting more often within the last 3 weeks this started.  This is very discouraging and depressing for me.  
 

I did have a traumatic event where my dog died unexpectedly and put me under a lot of stress, and then stress from symptoms getting worse as well.  My question now is do I keep holding at the 10mg I’m at or do I start to taper again in hopes that it will fix my vision?  Or will this make it even worse.  I’m afraid I have kindled my system since it’s been this long with no improvements.  
 

I'm noticing when I get my cycle symptoms are much worse as well - is this normal?  
 

please let me know how to proceed from here!

[ShantyO7]

On 4/6/2024 at 5:08 PM, Schmeg82 said:

however if I don’t eat every few hours I get racy and feel like my sugar drops fast.

I am the same way. I have to eat several small meals a day and even eat throughout the night to not feel "weird".

[ShantyO7]

On 5/5/2024 at 12:26 PM, Schmeg82 said:

I know this is all part of healing but it’s so hard to watch your regular life pass by every day.

I am really struggling with this as well. My WD started in Feb so we missed Valentine's Day, Easter, my birthday, my son's birthday, my other son graduated college, Mother's Day and now today, Father's Day. It's just really hard for me having all these "important" days just vanish with no celebration of any of them. And then feeling like you're watching everyone carry on with their lives, even your own family, while you feel stuck in hell and have no idea when things will get any better. 

[Schmeg82]

Just now, ShantyO7 said:

I am really struggling with this as well. My WD started in Feb so we missed Valentine's Day, Easter, my birthday, my son's birthday, my other son graduated college, Mother's Day and now today, Father's Day. It's just really hard for me having all these "important" days just vanish with no celebration of any of them. And then feeling like you're watching everyone carry on with their lives, even your own family, while you feel stuck in hell and have no idea when things will get any better. 

Yes I’ve missed all of these holidays as well, mine started in January.  My husbands birthday is this month and I’m so stressed about what to do for it, I can’t do places without feeling sick so I feel like I’m ruining his birthday as well.