Albert: preparing to get off Paxil / paroxetine for good

[Albert]

TY, I am really hoping I can get the pain under control w/out having to go to the ER.   I have that multi level cervical fusion that I am worried about.  Hopefully with some rest, I will get able to get settled back down.   One last question:   I would assume no muscle relaxers either?  The prescribed those but I would guess they will cause disruption as well?  If I go to the ER they would probably give me an IV and then it would all be over.   I would go spiraling down hill.  I just have to stay away from the ER and get my back under control. 

[Albert]

9 hours ago, Sebas said:

That confirms you were in WD. During WD the CNS is extra sensitive for triggers. Try to plan in advance; don't combine tapering periods with pain relief.

 

 

No. New changes will only destabilise CNS even more.

 

 

That's impossible to predict. Let these waves settle out for a couple of days to weeks, then there will probably be windows again. Keeping daily notes will help recognize healing process. 

 

 

That would be a better choise indeed. Avoid anti inflammatory meds. But for now first let CNS settle down.

 

Bye Sebas

So for now, I have been able to just use ICE.  If I do have to resort to some sort of pain medicine, Tylenol would be the best.  Is that correct?  

[Albert]

19 hours ago, Sebas said:

That confirms you were in WD. During WD the CNS is extra sensitive for triggers. Try to plan in advance; don't combine tapering periods with pain relief.

 

 

No. New changes will only destabilise CNS even more.

 

 

That's impossible to predict. Let these waves settle out for a couple of days to weeks, then there will probably be windows again. Keeping daily notes will help recognize healing process. 

 

 

That would be a better choise indeed. Avoid anti inflammatory meds. But for now first let CNS settle down.

 

Bye Sebas

Something that is always going through my mind is me continuing to split my dose of Paroxetine.  I started that back when I was in a really dark place and it did seem to ever so slowly  start me in the right direction.  However, as time has went on and I developed a balance, should I have went back to taking it once per day?  Currently, I am filing down and measuring two different doses and trying to remember to take them at the exact same time twice daily.  I almost wonder if it is keeping me from really stabilizing.  What is yiur experience with this Selena’s.  I think it was Colonial who suggested splitting the dose, but if I can recall, Alto didn’t seem to think it would really make a difference.  I have had a GENE test and I am a moderate metabolizer of Parexotine.  Basically average

[Albert]

Something that is always going through my mind is me continuing to split my dose of Paroxetine.  I started that back when I was in a really dark place and it did seem to ever so slowly  start me in the right direction. However, as time has went on and I developed a balance, should I have went back to taking it once per day?  Currently, I am filing down and measuring two different doses and trying to remember to take them at the exact same time twice daily.  I almost wonder if it is keeping me from really stabilizing.  What is yiur experience with this Selena’s.  I think it was Colonialwho suggested splitting the dose, but if I can recall, Alto didn’t seem to think it would really make a difference.  I have had a GENE test and I am amoderate metabolizer of Parexotine.  Basically average

[Sebas]

On 6/14/2023 at 7:41 PM, Albert said:

I would assume no muscle relaxers either?  The prescribed those but I would guess they will cause disruption as well? 

Yes thats very likely. Always check prescription or Google for yourself. You'll find lots of clues and red flags.

https://www.healthcentral.com/condition/back-pain/back-pain-drug-interactions-what-you-need-to-know

 

[Albert]

Is there any information out there around how cervical epidural cortisone injections will react in our system while tapering?  I advised my Dr, no more oral steroids, or any other medications.  She is very understanding around my position and she knows that I am tapering.  Not sure she really understands the significance of that.  She advised that with the injection, they usually do not see the same side effects as they do with the oral steroids as the medication is not passing through the liver, kidneys, and other organs and it is goes to work directly on the effected area inside of the spinal column to reduce the inflammation.   Do you think this would be OK or better?  I scheduled it for 2 weeks out, but I can cancel it if needed.  What are your thoughts? 

[Sebas]

2 hours ago, Albert said:

Not sure she really understands the significance of that

I'm sure she doesn't. No big deal just take control. 

 

2 hours ago, Albert said:

She advised that with the injection, they usually do not see the same side effects as they do with the oral steroids as the medication is not passing through the liver, kidneys, and other organs and it is goes to work directly on the effected area inside of the spinal column to reduce the inflammation. 

If you would have to choose between oral and intraarticular injections then the latter would be preferred. Hard for anyone to predict the side effects during tapering. It's trial and error. They sometimes combine the anti inflammatory agent with anesthesia.

 

Another general issue is that these  cortisone/corticosteroïd injections are well known for disrupting ("eating") joints, ligaments etc. if used more often then 1 or 2 times. They may cause more problems than they were to solve in the 1st place. 

 

[Albert]

Thank You Sebas, I am starting to balance out from that nasty round of oral steroids.  I am still dealing with pain in that joint.  I may try one injection there in that area to see if I can get comfortable again.  I have already elected NO anesthesia for the injection.   

 

Also, so you think it will allow me to get more stable if I were to change my current taper from taking the medication twice per day to once daily?  If so, how would you recommend that I do that?  Thanks AJ  

[Sebas]

On 6/30/2023 at 1:17 PM, Albert said:

Also, so you think it will allow me to get more stable if I were to change my current taper from taking the medication twice per day to once daily?  If so, how would you recommend that I do that?  Thanks AJ

In fact I have no experience with this. In general we want as few changes as possible to not upset our CNS (which has adapted to this). Were you stable before when you took it twice daily? 

 

Dont perform to many changes in the same time frame. Keep it steady. 

[Albert]

When I took the medicine for 20+ years, I took it as prescribed ( once daily in the AM ) and I was very stable the entire time.  ( unless I tried to decrease dose to fast )   Once I went through the horribly failed bridge and all of those medication changes and had to re-instate.  I had a long / difficult time stabilizing because I think I kindled.  After several months of trying to stabilize, I was only making very minor improvements when Colonial suggested I split the dose in 1/2 and take 12hrs apart as she claimed that helped her stabilize at one point.  That was also at a time when I was tapering an opioid and she thought that between all of the meds I was tapering, this would keep the CNS more stable.  However, the opioid is now long gone, along with all of the other medications and I just wonder if now, going back to taking the medication just once daily, as prescribed ( usually once at 8:00 am in the morning ) would allow me to further stabilize so that I could continue my taper more comfortably.   Would any of the other mods have experience with this ?  Kind of like you mentioned, I hate to make any changes w/out some direction or your opinion.   While I am in a far better place than I was ( FOR SURE ), I still feel like I am on edge and the weighing of two different tablets and trying to remember to take exactly 12 hrs apart, may be keeping me on edge.  

[LostInCanada]

@Albert @Altostrata @ChessieCat it looks like ChessieCat was your moderator but hasn't been on for sometime and the reason you haven't been getting answers. I noticed you wish to stop splitting your paxil dose, as previously suggested, and just take it once daily. This is out of my league. Alto is in the best position to help with that and maybe could assign a new moderator? I am curious to know the answer as well. Thanks Alto 

[Altostrata]

I can't say. Albert wore me out. Maybe one of the other moderators will take an interest.

 

I can't even follow what Albert wants to do. He just took steroids? This is one of the drug changes that upset the apple cart. Make more drug changes on top of that? Yes, this is a familiar pattern.

[LostInCanada]

@Alberthow are you making out? Have you figured out how to bring your doses together? Do you remember if you did a gradual separation? A suggestion might be to bring your evening dose one hour closer to your morning dose for 3 days, and so on till you are taking it at the same time. Hope it works out for you.👍

[Albert]

Thank you for reply, I have cleaned up eating and I feel like I have fully recovered from the round of steroids.  I Have just been focused on drinking lots of water, trying to eat clean, walking my two miles in the morning and then two miles in the evening.  I have not dropped dose any further, but I plan on doing so, here shortly.  The steroid thing caught me off guard.  It was only a short cycle and I struggle pretty regularly with back pain.  I have had 4 surgeries.  While Alto still seems frustrated with me and my situation, this site has helped me work off Xanax, Amitriptyline, Cymbalta, muscle relaxers, pain killers, and gabapentin.  I am down to this one final medication ( Paroxetine ) While, I can tall that Alto is not fond of me, I am still grateful for her and this site for helping me get my life back to a place where I can function and manage a taper.  I have come from a deep dark place of desperation and I am sure that there were times that I could have been a better listener.   My personal goal is to get down to 10mg once per day and stay there for a 6 months or a year and then continue on my taper.  As I continue to drop dose I will shorten the distance apart by an hour.  Main reason I was reaching out is at one point, I think one of the moderators recommended keeping the distance apart in 12 hr increments only as they advised that taking the medication in a shorter distance ( 4,6,8 hrs apart ) could result in CNS destabilization again.  Hopefully if I go slow enough, my brain will adjust.  Thanks again and I will try to be a better listener moving forward.   

>> However, if you or Alto thinks I should give it more time and stay consistent and splitting the dose every 12 hours, for a little longer, then I can sure do that. Thx again. 

 

Edited August 14, 2023 by Albert
I can stay at 12 hrs if recommended

[LostInCanada]

@Albert so glad to get an update and see all you have come through. Seriously good for you. I think you have a good idea of what you need to do. It's great having a plan. When we are in the middle of this crazy it is not easy. Slow and steady and be kind to yourself. Look how far you have come. 

 

[Albert]

Thank you very much.  I just dropped another 1percent and I am going to stay here for just a wee bit to see how I can manage. If I could dial in my eating, I would be a lot better off.  Thanks 

[LostInCanada]

That's great... I just dropped a bit and have been in a wave so holding as well. Slow and steady is good.💯

[Albert]

As I continue to cut/taper, I wanted to get an opinion around weighing the tablets.   My tablet has a coating and it can weight between .146g and .140g with about 70percent of those landing in the .143-.144 area.   Because of this gap, when I make my cut, I weigh every tablet 1st and then take same percentage from that tablet every time.  This way I am taking the same amount off of the tablet ( per the weight) every time.  Has there been any evidence that supports this being more accurate?  Or should I go with an average?  

[LostInCanada]

@Albert don't base your daily dose on each individual pill. Take 10 pills, add the weights and then divide by 10. Use that weight moving forward as your standard. It probably will be .144. So for example, if that is a 10 mg pill and your dose was now 5 mg, your pill would always need to be cut and shaved to .072. Is that a 10 mg pill?

I got my pharmacy to call the company to verify drug per weight and the average I got was what each pill should be. (the government regulations allow for a small variance). I use a generic paroxetine from Apotex. I've been doing this since April and I felt it helped me stabilize.

Are you also aware that changing drug companies can cause issues so you can request the same manufacturer and have that put on your file? I also have some extra in case there is a drug shortage.

[Albert]

Yes, it is a 10mg pill.  It has a coating on it that I really wish it did not have, but I have been on this same brand ( Solco ) for about 10 years.   Yes, I did know that changing manufactures can cause issues.  I have had it happen to me.  So you are also tapering Paroxetine?  What have you found is a good pace.   I will start by using the average of 10 pills when weighing the medication.  Maybe that will be more accurate.  Thanks for the advice.  !!! 

 

[LostInCanada]

@Albert you are very welcome. Yes Inam tapering Paxil as well. Mine has a coating too. I don’t really worry about it though. I have jus recently stabilized from being thrown into a cold turkey situation from the psychiatrist. So my system is very sensitive and I haven’t found a rhythm. I am trying to do 1-1.25% a week for 3-4 weeks and the a 2 week hold coming up. We will see how that works. 

[Albert]

That is kid of what happened to me as well.  What really sent me south was a failed bridge attempt from a psyc and then I had to re-instate about 2 month later.  It was brutal.  Took me about 2 years to stabilize. 

[LostInCanada]

It is brutal.... it's been 13 months since this insanity started for me...and 9 months reinstatement. I just figure slow is good. I am trying to really listen to my body and not worry about the calendar. I am doing the cuts but eventually will make my own liquid since it is not available in Canada. We will get there. 👍

[Albert]

Yea, once I get down where the tablet is to small, I will change over to making my own liquid with the tablet.  I think that would be best for me since I have not done good with the manufacture change.  As I start to change the way that I am weighing and cutting.  You mentioned that you would weigh 10 tablets, take the average, and then cut them all the same.   Do you do that for every 10 tablets you weigh?  Or just the 1st time ?  Basically, you take the average of 10 tablets and then use that as your starting point from there on?  Or do you take the average of 10 tablets, cut and weigh all of those and then do it all over again with the next 10?   Thanks 

[LostInCanada]

You only do it once. In a perfect world the manufacturer should have a consistent weight but as you discovered it varies. Fortunately we can close that gap by using the same weight every time. So my 5 mg weighs 59.2 mg. As long as I use this manufacturer that is my standard I work with. So today I am dropping my dose to 54.2 mg pill weight, which is 4.58 mg actual ingredient.  The great thing is you can cut in advance and any you cut too small you can use for lower doses coming up. Also my doctor still prescribed me 10 mg, he said the pharmacy doesn't need to know. This lets me have a good extra supply if there is a shortage or I make mistakes. I don't know if you have a good doctor or not. It may be wise if they aren't understanding just to keep the prescription the same and not tell them what you are doing. 👍

[Albert]

Yes, I do have a good Dr. and I have been saving the remainder of the pill just in case there is ever a problem or they discontinue my brand.  I have already started weighing out the dose as you have indicated and I made a 1 percent drop on October 1st.   I am going to try this for a month and then I am hoping to get just a little more aggressive and try the 2.5 percent every 4 weeks.   That is what I would really like to be able to do.   I have not changed back to just one dose per day just yet.   I thought I would get used to this new way of cutting and weighing the tablet before I make that change.  Hope u are doing well and thanks for keeping in touch.  

[LostInCanada]

I think that is great and a good plan. Better slow and steady than going fast and crashing. Are you taking a percentage off each dose? I think you will want to keep the drug as level as possible in your blood.

[Albert]

I am no longer taking a percentage off of each dose.  At about the beginning of October, I started cutting and measuring each tablet the exact same.   However, I am still taking two doses per day but instead of taking it 12 hrs apart = 7am and 7pm, I moved my evening dose to 5 pm.   On November 1st I am scheduled to drop another 2% and I was going to move it another 2 hrs closer.   I did pretty well overall with the drop last month.  I did have some symptoms, but nothing that I could not manage.    Are you still doing the 2.5 percent drop per month?  Have you been able to settle into a rhythm at that rate?  Or do you feel like that is to fast?    Thanks AJ 

[LostInCanada]

Nice update. I have not been able to do more than 1.25% a month. I still seem very sensitized from going cold turkey. But I am glad to be able to make any reduction since it leads to getting off. I am at 4.5 mg of drug. Just hoping I get more and more stable. I find at present it takes a solid month to recover from a small drop. 

Glad you are doing well. 👍

[SwedishDespair]

@Albert Wow. Your thread contains alot. We have the Paxil/Paroxetine in common, but I cannot taper or quit. Chances are your symptoms from the starting post, "the pills stops working",

is what has happened to me now. I'm almost 24 years on them. Did a slow taper like 10 years ago but had a horrendous crash.

 

Paxil is a crime against humanity.

[Albert]

1 hour ago, SwedishDespair said:

@Albert Wow. Your thread contains alot. We have the Paxil/Paroxetine in common, but I cannot taper or quit. Chances are your symptoms from the starting post, "the pills stops working",

is what has happened to me now. I'm almost 24 years on them. Did a slow taper like 10 years ago but had a horrendous crash.

 

Paxil is a crime against humanity.

So even doing a snails pace, you were not able to get off?  At what point did you crash?  Did you re-instate to a full dose?  Were you able to stabilize back on the original dose ?   Is it common for some not to be able to get off?  I was hoping to make it down to a low dose ( 10mg ) and then close the gap to one time per day and stay there for an extended time = Maybe 1-2 years and see if I could stabilize and have fewer symptoms.  However, I am not really willing to go through HE__. to get there either.  I am currently functional but not symptom free.  It is not ideal, but much better than where I was at when I crashed due to a failed bridge.  That took about 2 years to recover from.  THX 

[Albert]

21 hours ago, LostInCanada said:

Nice update. I have not been able to do more than 1.25% a month. I still seem very sensitized from going cold turkey. But I am glad to be able to make any reduction since it leads to getting off. I am at 4.5 mg of drug. Just hoping I get more and more stable. I find at present it takes a solid month to recover from a small drop. 

Glad you are doing well. 👍

4.5 is getting down there pretty low.  Where were you at when you tried to go cold turkey?  What did you re-instate at?  My biggest problem is that I am the bread winner of the family and while I really want to get off and go faster, I have to stay working and functioning to some degree.   Do you think my moving to a 2% drop is to much?  My last drop seemed to go OK, but I did have some symptoms.  Thanks AJ 

[LostInCanada]

@Albert from your drug signature, you went from 19 mg to 18 mg. That is. 5.3% drop. Correct me if I have it wrong . So 10% off 18 mg is 1.8mg. 5% is .9mg and 2.5% is .45mg.  Listen to your body, I think being functional is so important.

I was on 30 mg when the psych had me go to zero in 4 weeks. I reinstated at 5 mg after 3 months of h*ll. The symptoms increased and intensified and I found this site. I could barely read with understanding at that point but found something on reinstatement. The site was not accepting members ( last year December) so I guessed at a 5 mg reinstatement. I honestly think I could have waited longer to stabilize. 

[SwedishDespair]

On 10/31/2023 at 2:46 PM, Albert said:

So even doing a snails pace, you were not able to get off?  At what point did you crash?  Did you re-instate to a full dose?  Were you able to stabilize back on the original dose ?   Is it common for some not to be able to get off?  I was hoping to make it down to a low dose ( 10mg ) and then close the gap to one time per day and stay there for an extended time = Maybe 1-2 years and see if I could stabilize and have fewer symptoms.  However, I am not really willing to go through HE__. to get there either.  I am currently functional but not symptom free.  It is not ideal, but much better than where I was at when I crashed due to a failed bridge.  That took about 2 years to recover from.  THX 

Unfortunately yes. I took things extremely slow, but still had a bunch of tough (but manageable) withdrawal symptoms. Muscles acting up all over, mostly legs, and shoulders. 'Brain-zaps' (but mine did not have the 'electric' effect many talk about, mine were more like 'instant brain reboots', or like a 'millionth of a second vertigo'), emotional overflow, horrific nightmares and many more.

I was totally alone, despite my psychiatrist had said it was OK that I tried to taper, they did not offer any support, and openly said they did not support my claims about Paroxetine.

 

I reached 25% of my original dose (10mg/day, original dose was 40mg/day for 14 years) when it became overwhelming, tried re-instating former dose for another 6 weeks, but my reality crashed.

I was continously struck with prolonged panic attacks, an anxietylevel off the scale, very tough self-harm thoughts, 'unmentionable' thoughts overall.

Despite of the horrendeous withdrawal I just mentioned, it was my emotional turmoil that got me. The turmoil included regaining memories, or let's call it 're-gaining the emotion of the memory',

I kind of re-lived 14 years of Paroxetine, but now I had to deal with the emotions the pill had hidden.

 

So then I was supposed to re-live the trauma, alone, without ever have the prospect of acknowledgement.

Essentially I had the emotions I had had as a young person, which proved to myself that I was, as I always knew, a very emotional young man.

But this time, after being without emotions for so long, I couldn't bare it.

 

I knew this would haunt me to the point that I couldn't cope, especially when no one stands by you.

 

So I made I weighed my options, raise the dose and be 'emotionally numbed', but able to function and be alive.

About 3 years after starting the taper, I could level off at 20mg/day. It worked until this summer.

I'm as clueless as ever. No one knows if I must raise the dose, or if it will just stop working.

So I joined this site.

[Albert]

On 11/5/2023 at 12:48 PM, SwedishDespair said:

Unfortunately yes. I took things extremely slow, but still had a bunch of tough (but manageable) withdrawal symptoms. Muscles acting up all over, mostly legs, and shoulders. 'Brain-zaps' (but mine did not have the 'electric' effect many talk about, mine were more like 'instant brain reboots', or like a 'millionth of a second vertigo'), emotional overflow, horrific nightmares and many more.

I was totally alone, despite my psychiatrist had said it was OK that I tried to taper, they did not offer any support, and openly said they did not support my claims about Paroxetine.

 

I reached 25% of my original dose (10mg/day, original dose was 40mg/day for 14 years) when it became overwhelming, tried re-instating former dose for another 6 weeks, but my reality crashed.

I was continously struck with prolonged panic attacks, an anxietylevel off the scale, very tough self-harm thoughts, 'unmentionable' thoughts overall.

Despite of the horrendeous withdrawal I just mentioned, it was my emotional turmoil that got me. The turmoil included regaining memories, or let's call it 're-gaining the emotion of the memory',

I kind of re-lived 14 years of Paroxetine, but now I had to deal with the emotions the pill had hidden.

 

So then I was supposed to re-live the trauma, alone, without ever have the prospect of acknowledgement.

Essentially I had the emotions I had had as a young person, which proved to myself that I was, as I always knew, a very emotional young man.

But this time, after being without emotions for so long, I couldn't bare it.

 

I knew this would haunt me to the point that I couldn't cope, especially when no one stands by you.

 

So I made I weighed my options, raise the dose and be 'emotionally numbed', but able to function and be alive.

About 3 years after starting the taper, I could level off at 20mg/day. It worked until this summer.

I'm as clueless as ever. No one knows if I must raise the dose, or if it will just stop working.

So I joined this site.

So you settled back in at 30mg per day?  Sounds like you have really been through it.  I assume that when you had symptoms spike you tried to hold and wait it out.  I am currently still numbed as I taper.  I am down to 17.2 mg Paroxetine.  I am still having symptoms, but I am functioning and trying to deal with them as they rotate through my body.  I am having all of those same symptoms that you have explained. Have you decided to stop attempting to taper?  Or are you going to try to just go even slower?  How slow were you going?  Very sorry to hear that you had so much trouble.  

 

[Albert]

On 10/31/2023 at 10:57 AM, LostInCanada said:

@Albert from your drug signature, you went from 19 mg to 18 mg. That is. 5.3% drop. Correct me if I have it wrong . So 10% off 18 mg is 1.8mg. 5% is .9mg and 2.5% is .45mg.  Listen to your body, I think being functional is so important.

I was on 30 mg when the psych had me go to zero in 4 weeks. I reinstated at 5 mg after 3 months of h*ll. The symptoms increased and intensified and I found this site. I could barely read with understanding at that point but found something on reinstatement. The site was not accepting members ( last year December) so I guessed at a 5 mg reinstatement. I honestly think I could have waited longer to stabilize. 

I need to adjust my signature.  Initially, after 2+ years, I finally stabilized at 20mg.  Then I started to attempt 5% drop and quickly noted that I could not handle that. I have settled in at 1 percent taper every 30 days.  That is similar to your 1.25% taper per month.  How do you seem to be doing with your 1.25%?  I bought a professional scale and it seems to really be helping me measure an accurate dose.  I am hoping that I do not crash at some point?  Do you see that most can handle this small of a drop ?  Do you see some that can get off of this medication?  Thanks