markc2008: Long term sufferer

[ChessieCat]

4 hours ago, markc2008 said:

on the negative maybe an ever so slight worsening of sensitivity in “privates”.

 

Q:  Is this an issue that you have experienced before?

 

Q:  If yes, when did it happen?

 

One possibility is that you may be feeling some anxiety about the reinstatement.

[markc2008]

3 hours ago, ChessieCat said:

 

Q:  Is this an issue that you have experienced before?

 

Q:  If yes, when did it happen?

 

One possibility is that you may be feeling some anxiety about the reinstatement.

It is a symptom I’ve had ever since stopping the viibryd cold turkey so I’ve had it two years and it gradually improved some but I have noticed a little more numbness there since reinstating 

[Altostrata]

Hello, @markc2008, how are you?

[markc2008]

16 minutes ago, Altostrata said:

Hello, @markc2008, how are you?

I am doing ok. I am not noticing too much change either way. Maybe slightly less leg spasms and less brain fog so far. Nothing super negative I’ve noticed. I’m only on that 2.5mg dose and we’re going to Colorado for the holiday tomorrow. My plan is to hold steady on this 2.5mg dose until we get back in town. That would put me at about ten days on that dose. If no real change I’ll go to 5mg I guess?

[markc2008]

But I feel relieved knowing I haven’t had any major issue with it. Although I’d like improvement of course.

[Altostrata]

What happened with the dulled genital sensation symptom?

 

More is not necessarily better. I would not make any changes until next month, depending on how you're doing.

[markc2008]

49 minutes ago, Altostrata said:

What happened with the dulled genital sensation symptom?

 

More is not necessarily better. I would not make any changes until next month, depending on how you're doing.

It’s sort of calmed down some. I’d say it’s still there but not as bad. Fairly close to how it was now

[markc2008]

50 minutes ago, Altostrata said:

What happened with the dulled genital sensation symptom?

 

More is not necessarily better. I would not make any changes until next month, depending on how you're doing.

Ok I’ll hold on this dose for a bit longer then thanks.

[markc2008]

Well on day 10. Was doing petty food but yesterday some of sexual side effects took a turn for the worse. Having for lack of a better word shrinkage or hard flaccid symptoms again which I have had off and on since stopping initially. Those symptoms seemed to have subsided some when I initially reinstated. I’m wandering if I should try a small increase and see if it helps subside it again? Maybe my body adjusted to that small amount where it’s not helping ?

[ChessieCat]

The idea of reinstatement is to reduce withdrawal symptoms so that it brings them to a bearable level.  I understand that sexual issues can be very difficult to live with, however increasing the dose might not help with that and could possibly make that or other things worse.

 

It has only been 10 days since you reinstated.  My suggestion is to leave things alone at this time, especially if you have noticed an improvement in your withdrawal symptoms.  There is no pill, potion, bullet or spell which will magically fix things.  Time and patience and keeping stress to a minimum.  You need to give you brain time to adjust to getting the drug again.

 

It is better to compare how you feel now with how you felt at your worst, not how you felt at your best or how you want to feel.

[markc2008]

1 hour ago, ChessieCat said:

The idea of reinstatement is to reduce withdrawal symptoms so that it brings them to a bearable level.  I understand that sexual issues can be very difficult to live with, however increasing the dose might not help with that and could possibly make that or other things worse.

 

It has only been 10 days since you reinstated.  My suggestion is to leave things alone at this time, especially if you have noticed an improvement in your withdrawal symptoms.  There is no pill, potion, bullet or spell which will magically fix things.  Time and patience and keeping stress to a minimum.  You need to give you brain time to adjust to getting the drug again.

 

It is better to compare how you feel now with how you felt at your worst, not how you felt at your best or how you want to feel.

Thank you. Yeah I’d say it’s not to the point of my worst, it is to the point of some of the negatives I had experienced with some of my lower days that I hadn’t seen in a while. It has helped some muscle twitches. I’m going to sit tight then for longer and see what if anything changes 

[markc2008]

On 12/26/2021 at 5:26 PM, ChessieCat said:

The idea of reinstatement is to reduce withdrawal symptoms so that it brings them to a bearable level.  I understand that sexual issues can be very difficult to live with, however increasing the dose might not help with that and could possibly make that or other things worse.

 

It has only been 10 days since you reinstated.  My suggestion is to leave things alone at this time, especially if you have noticed an improvement in your withdrawal symptoms.  There is no pill, potion, bullet or spell which will magically fix things.  Time and patience and keeping stress to a minimum.  You need to give you brain time to adjust to getting the drug again.

 

It is better to compare how you feel now with how you felt at your worst, not how you felt at your best or how you want to feel.

I do have a couple of things I have noticed and wanted to bounce off of you along with some observations. I wanted to ask your thoughts on the sexual side effects. I did not have any sexual side effects on the medications, only upon stopping, so would that not be withdrawal symptoms as well?Also, so viibryd has a very short half life. What I have noticed is some of my side effects seem worse in the afternoon/evening. Without too much detail or graphic nature, I was having muscle spasms in legs constantly, flaccid shrinkage almost like the well known hard flaccid of you are familiar with the condition, very low sensitivity in genitals and a condition called RSS(red scrotum syndrome). When I first reinstated all of this seemed improved some. Then I noticed some of it return, and then for a couple of days it was better again. Since about day six I’ve noticed all of this being worse again, but what I’m finding is after I take a dose of 2.5mg I seem slightly improved for a portion of the day. Is it possible that with the short half life and such a small dose by late afternoon/evening it’s not in my system and almost causing more of an unsettled nervous system? I can easily see when issues are coming back with my RSS condition especially and I think it’s directly tied to nervous system disruption. It’s just a thought and you know much more than I do about the medications so I thought I’d ask. It’s just odd for several hours after a dose I see things calm down only to find by night I’m having down times again…

[markc2008]

1 minute ago, markc2008 said:

I do have a couple of things I have noticed and wanted to bounce off of you along with some observations. I wanted to ask your thoughts on the sexual side effects. I did not have any sexual side effects on the medications, only upon stopping, so would that not be withdrawal symptoms as well?Also, so viibryd has a very short half life. What I have noticed is some of my side effects seem worse in the afternoon/evening. Without too much detail or graphic nature, I was having muscle spasms in legs constantly, flaccid shrinkage almost like the well known hard flaccid of you are familiar with the condition, very low sensitivity in genitals and a condition called RSS(red scrotum syndrome). When I first reinstated all of this seemed improved some. Then I noticed some of it return, and then for a couple of days it was better again. Since about day six I’ve noticed all of this being worse again, but what I’m finding is after I take a dose of 2.5mg I seem slightly improved for a portion of the day. Is it possible that with the short half life and such a small dose by late afternoon/evening it’s not in my system and almost causing more of an unsettled nervous system? I can easily see when issues are coming back with my RSS condition especially and I think it’s directly tied to nervous system disruption. It’s just a thought and you know much more than I do about the medications so I thought I’d ask. It’s just odd for several hours after a dose I see things calm down only to find by night I’m having down times again…

I also should specify I take it every morning around 8.

[ChessieCat]

Please note that I am just offering some thoughts of possibilities.  Basically brain storming.

 

If there is a regular pattern related to when you take your dose and the worsening/improvement of a symptom then it is possibly caused by interdose withdrawal.  Many psychiatric drugs cover a 24 hour period.  However some people are fast metabolisers.  If you take your dose at 8am then with Viibryd having a half life of about 25 hours, if you were a fast metaboliser I think it would generally be the hours leading up to your next dose when the withdrawal would be most noticeable.

 

Something else to consider is that you take your dose at 8am and you notice the symptoms in the evening, it could possibly be that is the time when the drug has built back up to maximum level in your system again.

 

You need to remember that you have only been back on Viibryd since 16 December, about 2 weeks, and you had been off it for a long time.  You might consider waiting another 2 weeks before you change anything.  During this time, keep notes on paper for yourself to see if there is a pattern.  If after this time you think it might be interdose withdrawal, then you could split your doses, by moving part of the dose by 1 hour each day, whilst continuing to keep notes.

 

Even if it is not interdose withdrawal, then splitting your dose generally would not be an issue.  And if you are taking too high a dose and it is the build up of the drug in the evening causing the issues, then splitting the dose might help to stop or reduce the issue of the full dose peaking in the evening, ie a more level amount overall.

 

And another thought.  Are you taking any supplements at the same time that you take your Viibryd?  If yes, then you might consider taking them apart from the Viibryd.

 

Only make one change at a time and keep notes.

[markc2008]

3 hours ago, ChessieCat said:

Please note that I am just offering some thoughts of possibilities.  Basically brain storming.

 

If there is a regular pattern related to when you take your dose and the worsening/improvement of a symptom then it is possibly caused by interdose withdrawal.  Many psychiatric drugs cover a 24 hour period.  However some people are fast metabolisers.  If you take your dose at 8am then with Viibryd having a half life of about 25 hours, if you were a fast metaboliser I think it would generally be the hours leading up to your next dose when the withdrawal would be most noticeable.

 

Something else to consider is that you take your dose at 8am and you notice the symptoms in the evening, it could possibly be that is the time when the drug has built back up to maximum level in your system again.

 

You need to remember that you have only been back on Viibryd since 16 December, about 2 weeks, and you had been off it for a long time.  You might consider waiting another 2 weeks before you change anything.  During this time, keep notes on paper for yourself to see if there is a pattern.  If after this time you think it might be interdose withdrawal, then you could split your doses, by moving part of the dose by 1 hour each day, whilst continuing to keep notes.

 

Even if it is not interdose withdrawal, then splitting your dose generally would not be an issue.  And if you are taking too high a dose and it is the build up of the drug in the evening causing the issues, then splitting the dose might help to stop or reduce the issue of the full dose peaking in the evening, ie a more level amount overall.

 

And another thought.  Are you taking any supplements at the same time that you take your Viibryd?  If yes, then you might consider taking them apart from the Viibryd.

 

Only make one change at a time and keep notes.

Thank you for all the thought on this. I do take fish oil and tamsulosin for my bladder. Those are the only two other things I take. I’ve been taking both for quite a while. Yeah it’s like the mornings to mid day seem good and by late afternoon my symptoms seem worse. I’ll continue to take notes and observe

[markc2008]

On 12/28/2021 at 3:19 PM, ChessieCat said:

Please note that I am just offering some thoughts of possibilities.  Basically brain storming.

 

If there is a regular pattern related to when you take your dose and the worsening/improvement of a symptom then it is possibly caused by interdose withdrawal.  Many psychiatric drugs cover a 24 hour period.  However some people are fast metabolisers.  If you take your dose at 8am then with Viibryd having a half life of about 25 hours, if you were a fast metaboliser I think it would generally be the hours leading up to your next dose when the withdrawal would be most noticeable.

 

Something else to consider is that you take your dose at 8am and you notice the symptoms in the evening, it could possibly be that is the time when the drug has built back up to maximum level in your system again.

 

You need to remember that you have only been back on Viibryd since 16 December, about 2 weeks, and you had been off it for a long time.  You might consider waiting another 2 weeks before you change anything.  During this time, keep notes on paper for yourself to see if there is a pattern.  If after this time you think it might be interdose withdrawal, then you could split your doses, by moving part of the dose by 1 hour each day, whilst continuing to keep notes.

 

Even if it is not interdose withdrawal, then splitting your dose generally would not be an issue.  And if you are taking too high a dose and it is the build up of the drug in the evening causing the issues, then splitting the dose might help to stop or reduce the issue of the full dose peaking in the evening, ie a more level amount overall.

 

And another thought.  Are you taking any supplements at the same time that you take your Viibryd?  If yes, then you might consider taking them apart from the Viibryd.

 

Only make one change at a time and keep notes.

Another bad day. It’s so weird. I can literally have change hour to hour. One hour I have slight libido, no genital shrinkage which I had a trouble with, to the next hour having a ton more numbness, severe shrinkage and the return of RSS(red scrotum syndrome) which I haven’t had in a year which came about when I first got pssd.  It is definitely creating change I just don’t know that it’s good change. I have had some positives. It’s slightly helped with arousal. I’m going to hold at this small of a dose but the fact that the first six days I had much improvement, I really am wandering if it’s just too low of a dose I adjusted to but I guess time will tell..

[markc2008]

On 12/28/2021 at 3:19 PM, ChessieCat said:

Please note that I am just offering some thoughts of possibilities.  Basically brain storming.

 

If there is a regular pattern related to when you take your dose and the worsening/improvement of a symptom then it is possibly caused by interdose withdrawal.  Many psychiatric drugs cover a 24 hour period.  However some people are fast metabolisers.  If you take your dose at 8am then with Viibryd having a half life of about 25 hours, if you were a fast metaboliser I think it would generally be the hours leading up to your next dose when the withdrawal would be most noticeable.

 

Something else to consider is that you take your dose at 8am and you notice the symptoms in the evening, it could possibly be that is the time when the drug has built back up to maximum level in your system again.

 

You need to remember that you have only been back on Viibryd since 16 December, about 2 weeks, and you had been off it for a long time.  You might consider waiting another 2 weeks before you change anything.  During this time, keep notes on paper for yourself to see if there is a pattern.  If after this time you think it might be interdose withdrawal, then you could split your doses, by moving part of the dose by 1 hour each day, whilst continuing to keep notes.

 

Even if it is not interdose withdrawal, then splitting your dose generally would not be an issue.  And if you are taking too high a dose and it is the build up of the drug in the evening causing the issues, then splitting the dose might help to stop or reduce the issue of the full dose peaking in the evening, ie a more level amount overall.

 

And another thought.  Are you taking any supplements at the same time that you take your Viibryd?  If yes, then you might consider taking them apart from the Viibryd.

 

Only make one change at a time and keep notes.

So does the ssri antidepressant half lives not mean for example at 25 hrs or you have half the dose in your system? I’m just wandering if since first six days I was improved if my body adjusted to that small of a dose and now by later in the day since I’m only taking 2.5mg if it’s too low in my system so I’m having instability making my symptoms worse now ? Or does it work differently where once it’s in your system consistently the blood levels of it don’t drop? I’m still having worsening compared to baseline. Oddly enough after first day of reinstating I had improvement. I know it’s been two weeks today. I just want to be sure I’m on the right amount? 

[ChessieCat]

When you start taking a drug you are starting for nothing.  The drug has to gradually build up in your system which for many drugs it takes about 4 days to reach the full/peak level in the blood.  However it takes longer for it to register in the brain.

 

I am trying to find some information that will explain it.  I sort of understand it but cannot put it into words.

[ChessieCat]

I found this topic which discusses it:

 

long-half-life-short-half-life-metabolites-washout-what-does-it-all-mean

 

[ChessieCat]

This diagram gives a good visual of what happens.

 

The highest part of the curve is the maximum peak concentration and the lowest part of the curve is the minimum peak concentration.  Once the drug is at steady state then the max and min are at a higher concentration than during the first four days of starting the drug.

 

 

[markc2008]

1 hour ago, ChessieCat said:

This diagram gives a good visual of what happens.

 

The highest part of the curve is the maximum peak concentration and the lowest part of the curve is the minimum peak concentration.  Once the drug is at steady state then the max and min are at a higher concentration than during the first four days of starting the drug.

 

 

Very helpful. So regardless of dosage early on there are more peaks and valleys and then after roughly four days it still dips but more consistent and a pretty steady concentration. I was trying to figure out if I could be on too low of a dose to where maybe I was almost running out by end of day but doesn’t seem to be the case. It sounds maybe like just what you said, as it reached a higher buildup maybe that’s what has caused my problems. Maybe my body will adjust. Thanks for all the effort put into this. I am really struggling with all of it. It still feels like it was my best option. I’ll keep you posted on any change

[markc2008]

It was roughly day six when I started having issues so would make sense

[markc2008]

Day 16- some of the “flare ups” I was having seemed to calm some. Still have real low sensitivity—almost numbness in that region and libido is low but some of the other stuff died down. If no worsening but also no improvement at week three I’ll gradually increase the dose slightly. I don’t want to get to a full therapeutic dose, but I do want to get to a dosage that could have potential to relieve everything, not sure if 2.5mg is enough to do that or if that is more of a trial to see how I react. I’ve definitely noticed the dose so I’m glad I didn’t start higher. 

[ChessieCat]

Pharma and medical professionals think in terms of "therapeutic dose".  SA thinks in terms  of "lowest effective dose".

 

Please be very careful regarding increasing.  Some members have tried to find the "perfect" dose and made things worse.  Some of them that have had this happened have never been able to fully stabilise after this has happened.  And some have ended up changing or adding a drug.  And doing those things can cause a whole lot of issues.

[Daisygirlsk]

On 1/1/2022 at 3:19 PM, ChessieCat said:

Pharma and medical professionals think in terms of "therapeutic dose".  SA thinks in terms  of "lowest effective dose".

 

Please be very careful regarding increasing.  Some members have tried to find the "perfect" dose and made things worse.  Some of them that have had this happened have never been able to fully stabilise after this has happened.  And some have ended up changing or adding a drug.  And doing those things can cause a whole lot of issues.

that's what happened to me I kept increasing and never stabilized just developed akathisia.

[markc2008]

On 1/1/2022 at 3:19 PM, ChessieCat said:

Pharma and medical professionals think in terms of "therapeutic dose".  SA thinks in terms  of "lowest effective dose".

 

Please be very careful regarding increasing.  Some members have tried to find the "perfect" dose and made things worse.  Some of them that have had this happened have never been able to fully stabilise after this has happened.  And some have ended up changing or adding a drug.  And doing those things can cause a whole lot of issues.

Ok thank you. Yeah I don’t plan on going to full doses of it. If I go any higher it wouldn’t be over 5mg. A regular dose is 20mg. I just hope I get better. Don’t feel much positive after 17 days. Not much worse but not really better in any sense overall 

[markc2008]

Day 21. No real improvement or drastic negative. Increased to 5mg and will stay on it for a month I guess.. hope to have improvement eventually 

[markc2008]

Ok so it will be a month Thursday. I’m on 5mg currently and seem to be somewhat better. At the least my mood is better, and I’ve noticed the shrinkage seems to be going away I was having issues with. I was still hoping my libido and sexual function would return. I have noticed that I improve with an increase of the medication. When I first reinstated the first couple of days seemed good then it got worse, once I upped to 5mg it seemed to get better and now it’s leveled out but I wouldn’t say worse. Not sure what dosage I should be considering and what type of time frames either? When I took it before my regular dosage was 20mg.

[ChessieCat]

That is good that you have noticed improvement.

 

Just because you took 20mg before does not mean that you will be able to take that high a dose again.  The effect of stopping/starting psychiatric drugs has a cumulative effect especially after experiencing withdrawal symptoms which are caused because the brain/nervous system "isn't happy".  What "worked" before may not work in the future.

[markc2008]

15 minutes ago, ChessieCat said:

That is good that you have noticed improvement.

 

Just because you took 20mg before does not mean that you will be able to take that high a dose again.  The effect of stopping/starting psychiatric drugs has a cumulative effect especially after experiencing withdrawal symptoms which are caused because the brain/nervous system "isn't happy".  What "worked" before may not work in the future.

Thank you and I completely agree with that. Just not sure what my overall approach should be if I have noticed a little improvement that has correlated it seems with reintroduction and then small increase? Should I stay on 5 mg long term even if I stay at this minimal improvement and no worse? Should I try to increase slightly after a while ? Just not sure

[ChessieCat]

11 minutes ago, markc2008 said:

Should I stay on 5 mg long term even if I stay at this minimal improvement and no worse? Should I try to increase slightly after a while ? Just not sure

 

These are decisions that only you can make.  I will say that you will need to stabilise for at least 3 months possibly longer before you consider tapering.  And when you do decide to taper I suggest that you make a test reduction first, perhaps only a 1% reduction, just to see whether it is okay to start the taper.  IF you do ever decide to increase I strongly suggest you do it in very small amounts and wait, like you did this time.

 

Also I realise that some of your symptoms are physical, but for other symptoms it is important to learn and use non drug coping techniques and not try to "fix" the issues with drugs/supplements.

 

Non-drug techniques to cope

[markc2008]

On 1/11/2022 at 6:42 PM, ChessieCat said:

 

These are decisions that only you can make.  I will say that you will need to stabilise for at least 3 months possibly longer before you consider tapering.  And when you do decide to taper I suggest that you make a test reduction first, perhaps only a 1% reduction, just to see whether it is okay to start the taper.  IF you do ever decide to increase I strongly suggest you do it in very small amounts and wait, like you did this time.

 

Also I realise that some of your symptoms are physical, but for other symptoms it is important to learn and use non drug coping techniques and not try to "fix" the issues with drugs/supplements.

 

Non-drug techniques to cope

Well I plan to slowly work to 10mg over the next two months and hold there regardless. That’s half what I used to take. I’m not comfortable going any higher than that. I was doing ok and then came down with Covid Monday. So now I’m having severe issues with everything I was trying to resolve. My theory though is it is due to Covid and not reinstatement, atleast I hope. It makes sense if I’m trying to stabilize my nervous system then introducing Covid that disrupts the nervous system that it could aggravate everything. It’s day 5 with Covid and it’s bad.

[markc2008]

On 1/11/2022 at 6:42 PM, ChessieCat said:

 

These are decisions that only you can make.  I will say that you will need to stabilise for at least 3 months possibly longer before you consider tapering.  And when you do decide to taper I suggest that you make a test reduction first, perhaps only a 1% reduction, just to see whether it is okay to start the taper.  IF you do ever decide to increase I strongly suggest you do it in very small amounts and wait, like you did this time.

 

Also I realise that some of your symptoms are physical, but for other symptoms it is important to learn and use non drug coping techniques and not try to "fix" the issues with drugs/supplements.

 

Non-drug techniques to cope

So I have had worsening. I’m on 7.5mg and was having problems prior to the increase. When I was on 5mg I noticed some negatives. Every other time a slight increase in dosage helped. This time it did not. Should I decrease back down to 5mg and see what happens or will that make me worse without stabilizing at 7.5? 

[markc2008]

I have been on 7.5mg for a week

[markc2008]

I should have stayed where I was at. The numbness is really bad now. I’m guessing I should go back to the 5mg dose today but worried that could cause even more disruption cutting the dose now?

[markc2008]

Went back to 5mg. I think I’m more irritated sliding the dosage back but I think I’m the long run it’s probably for the better since 7.5 was making things a lot worse