markc2008: Long term sufferer

[markc2008]

Hey guys and girls,

 

I just wanted to introduce myself and give my background. I am a 38 year old male, who started on ssri antidepressants probably around the age of 29.

 

I initially had a sick wife who was type 1 diabetic and very brittle. She did not want to take care of her self, and obviously would get very stressed and frustrated.  I know now that was completely normal, however, back then, the doctor thought I should be on something. He put me on sertraline 50mg. I did not seem to feel much different on the sertraline from what I could tell, and the only side effect I had was delayed ejaculation, which as a guy, I honestly liked the extra control. I took it for about two years and then felt like my libido had dipped a bit, so the doctor switched me to Viibryd(vilazadone).

 

I felt pretty good on the viibryd, and again, had no real issues that I noticed. I took the viibryd for roughly five years without any large positives or negatives. I had been remarried and very happy for years and felt like I did not need the medication anymore. I had never been to a psychiatrist as all my medications came from my primary care. My doctor never once told me about the dangers of stopping or tapering, etc., so I did not know it was a big deal to just stop taking it---which I did.

 

At first I did not notice any big change, then suddenly about two weeks after stopping--something clicked and I was different. I had a host of issues, I had a lot of brain fog and memory issues, mainly just staying on task. I had zero appetite, the thought of food made me sick feeling, and I had tingling in hands and legs, along with muscle spasms. I also had a ton of sexual issues, bare with me because it is graphic and detailed, but to be transparent, I would like to share. I could not even think a sexual thought, my beautiful and attractive wife just was there. I had zero arousal, even to nudity. I could not get an erection at all, did not feel pleasure in my genitals anymore and they are even numb,  and they would draw up when flaccid almost like after you jump in a cold pool. I had no spontaneous or nocturnal erections and had zero desire anymore to masterbate or even have sex.  After I was like this for three months, I made the stupid decision to explore other things to try to get better. I went to the doctor and had my testosterone checked-it was 300-which is within "low normal" but also very low for my age.

 

I started doing testosterone injections to see if it helped-and it did some in waves-but not consistently. The doctor also prescribed wellebutrin to try to reverse the negative effects. I took 150mg daily for about three weeks with no real change other then my head felt more "wishy washy" or clouded, so I decided to taper off.

 

Because the wellebutrin is a coated pill that couldnt be cut, I had to taper to every other day, then every two days, etc. When I began tapering, on the days I did not take a dose, I felt 100% better.  When I would take a dose again the positive return would go away. This continued until I tapered completely off and I was 100% normal for about a month after stopping, then I returned to baseline of all the negative effects again.  I stayed off everything for several months after that with no improvement, I was completely impotent unless I took a pill.

 

After several months of no change I decided to try buspirone after reading some studies of it reversing sexual dysfunction. I took it for a couple of months and had a one week long window with a lot of improvement, but again, the positive effects went away and never returned.  After tapering off the buspirone I stayed drug free for almost a year. My brain fog and mood did seem to improve, the ED improved slightly but still not enough to where I did not need assistance, and the ED pills quit working so I had to resort to injections to have an erection which are not fun but work well. The flaccid shrinkage seems to come and go but is not a consistent anymore, and my appetite came back. The tingling seems to have also subsided, yet I still have muscle spasms--predominately in the legs daily. I still struggle every day with this, and if I did not have an awesome wife, one year old son, and another on the way, I may not be here--that is how tough it has been.  So it has been two and a half years since stopping the viibryd and the symptoms I still have are: numb penis, lack of libido-although sometimes it will slightly return only to go away again, ED, still no reaction to sexual stimuli like nudity, off and on shrinkage when flaccid, and now I had recently gone to the urologist for a weak urine stream and found out my urethral sphincter muscle does not relax to let urine pass properly. It is almost like muscles in that area stay cramped and tense, which is obviously the case with my sphincter muscle, and may be the case with my ED as it looks sometimes like my smooth muscle does not relax properly the way it hangs.

 

I have constant pelvic floor spams, so I started going to a pelvic physical therapist which has helped the spams some. She suggested trying 5mg diazepam suppositories occasionally to try to get those muscles to relax. The doctor has prescribed it, but I have been a little scared to try it with everything I have had happen. I can see the logic in it, but I also do not want to make myself worse. If anyone has used the diazepam and has feedback about the risks involved, that would be great to hear. I realize it is super addictive, so I would not take it very often.

 

Anyways, so I have been stuck like this for over two years and while there has been some slight improvement in a few areas, I still really struggle with this. I even have kicked around the idea of reinstating the viibryd at a very low dose, but I do not know how much of a risk or helpful it would be after this long. I hope to gain a lot more knowledge being a part of this forum, so that I make more calculated decisions and hopefully make a full recovery one day. I am terrified at 38 I will be stuck like this forever and lose my whole life. I function so horribly sexually, I have even explored an implant. I just never thought my health and life would go this way. Thanks for reading my story.

 

 

Edited October 27, 2021 by ChessieCat
added spacing for easier reading

[Kiasofia]

Welcome @markc2008

I'm very sorry for all you've gone through and that your still having problems. Are you taking any drugs or supplements at the moment?

 

Sexual problems after taking these drugs is called PSSD and you can read more about it here:

https://www.survivingantidepressants.org/topic/15319-pssd-post-ssri-sexual-dysfunction/?tab=comments#comment-60

 

To advise you further we ask all members to create a drug history in their signature by following these instructions:

https://www.survivingantidepressants.org/topic/24613-how-to-summarize-your-drug-history-in-your-signature/

 

When we have a few more details, we will be in a better position to offer support and suggestions.

 

This is your Introductory topic, where you can ask questions and connect with other members.  We're glad you found your way here!

[markc2008]

Thank you. I currently take fish oil, tamsulosin(for bladder), and I am on trt/hcg for my low testosterone. I do not currently take any type of antidepressant. Again, I have been prescribed 5mg diazepam suppositories to help relax the pelvic floor muscles in hope of some improvement, however, I did not want to just take it though without talking here and being calculated with it. Thanks again for the reply. It has definitely been challenging with everything. I am familiar with pssd, and I do believe that is what I am experiencing, however, like some here and the reason I am here, I believe pssd is a form of persistent withdrawal. 

[Kiasofia]

Since the purpose of this site is to help people taper off drugs, not start them, we will not be recommending you start another drug. That will have to be your decision. Be aware that "drug shopping" or recommending drugs is not allowed on the site. There are other support sites for this, such as http://DepressionForums.org or http://PatientsLikeMe.com.

 

From what I have read PSSD can take a long time to heal, but it does get gradually better with time. I hope you are able to connect with others here on the forum with similar experiences and learn some good non-drug coping methods.

 

We’re here to support you!

 

 

Edited October 27, 2021 by Kiasofia

[street129]

Pssd is form of persistent WD

That is not something I would not want.

 

I'm in WD came on suddenly, I've been stable 10 months

I had my vaccine in early august by early september one day i got WD, but it went away, but returned middle of september

any links for the vaccine...

 

Get better @markc2008

[markc2008]

Yes I do believe it is a form of withdrawal and it is obviously long term since I’m two and a half years in with no huge improvements. I’ve considered reinstating at a very low dose then tapering that. I just do not know what the best answer is… but I’m also getting concerned it could be permanent. 

[ChessieCat]

1 hour ago, markc2008 said:

I’ve considered reinstating at a very low dose then tapering that

 

If you do ever decide to reinstate, and please note that I am not suggesting reinstatement, my suggestion would be to start with a very tiny tester dose to see how you react.  If that didn't cause any issues then you could then make small increases, keeping in mind that it takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.

 

And if it ever happened that you decided to start a new drug my suggestion would be the same as the above.

 

It is better to start with a low dose and increase gradually than to risk taking too much.

[markc2008]

On 10/28/2021 at 10:53 PM, ChessieCat said:

 

If you do ever decide to reinstate, and please note that I am not suggesting reinstatement, my suggestion would be to start with a very tiny tester dose to see how you react.  If that didn't cause any issues then you could then make small increases, keeping in mind that it takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.

 

And if it ever happened that you decided to start a new drug my suggestion would be the same as the above.

 

It is better to start with a low dose and increase gradually than to risk taking too much.

How would I start with a low dose consistently if so? Would I cut it or try to get some sort of liquid form? 

[markc2008]

I have decided to talk to my doctor and try to get a liquid script of viibryd or find out the best way to take a really low dose and reinstate it. I’ve read through all the posts and understand after being off over two years it’s more of a risk. At this point though with as numb as I am in certain regions, the zero libido, memory issues, and lack of some emotions, i feel like if it improves at all it’s a win. If anyone else has suggestions or any input I’d greatly appreciate it

[ChessieCat]

From Post #1 of the Tips for Tapering Viibryd topic:

 

  

On 5/16/2013 at 3:40 AM, Altostrata said:

 

Make your own liquid

Like other non-timed-release drugs, one might make a Viibryd liquid out of tablets and water for more precise titration. See How to make a liquid from tablets or capsules

 

 

[markc2008]

Thanks. I have quite a bit of it still but it’s expired. I’ve heard it loses some effectiveness after it expires. I wander If I should toss what I have and get a new script 

[markc2008]

I’m really scared after all these years to reintroduce it. But being 38, having bladder issues and intimacy issues because of this along with dull emotions is the worst. I’m thinking it’s worth the risk at this point

[ChessieCat]

9 hours ago, markc2008 said:

Thanks. I have quite a bit of it still but it’s expired. I’ve heard it loses some effectiveness after it expires. I wander If I should toss what I have and get a new script 

 

Yes.  Because there is no way of knowing whether the drug has full efficacy, it is not helpful to take it.  It can add anxiety from the not knowing.  And if you start taking an expired drug and then get a fresh batch, you won't know if you have done a small increase in dose.

 

Better to start the way you will continue instead of adding in an unknown.

 

8 hours ago, markc2008 said:

I’m really scared after all these years to reintroduce it.

 

That is why I make the suggestion to try a very small tester dose.  This dose isn't to help with the withdrawals, but to find out how you react to the drug.  Just like when you are tasting a new food, you only try a small amount, you don't shove the whole lot into your mouth. That is what people generally do.  Unless you've been drinking too much - just joking but thought that was funny, because I can imagine drunk people doing that. 🤣  I have this image of them trying super hot chilies! and then of course they would probably wash it down with more beer (when actually they should be drinking milk to counteract it - it works!).  Sorry off on a tangent.

 

If you did have a negative reaction it is more likely to be a minor reaction than a major one, and the recovery from the negative reaction is likely to take less time.

[Alice1]

I've seen many in your position brighten up after 4-6 years ..  I just want you to know .. Good luck .

[markc2008]

Thank you for the encouraging words. I know, it’s tough to decide whether to wait it out and hope I improve naturally or try to reinstate a low dose and see if I can stabilize on that.. I just want to return to a remotely normal state. 

[markc2008]

2 hours ago, Alice1 said:

I've seen many in your position brighten up after 4-6 years ..  I just want you to know .. Good luck .

 

5 hours ago, ChessieCat said:

 

Yes.  Because there is no way of knowing whether the drug has full efficacy, it is not helpful to take it.  It can add anxiety from the not knowing.  And if you start taking an expired drug and then get a fresh batch, you won't know if you have done a small increase in dose.

 

Better to start the way you will continue instead of adding in an unknown.

 

 

That is why I make the suggestion to try a very small tester dose.  This dose isn't to help with the withdrawals, but to find out how you react to the drug.  Just like when you are tasting a new food, you only try a small amount, you don't shove the whole lot into your mouth. That is what people generally do.  Unless you've been drinking too much - just joking but thought that was funny, because I can imagine drunk people doing that. 🤣  I have this image of them trying super hot chilies! and then of course they would probably wash it down with more beer (when actually they should be drinking milk to counteract it - it works!).  Sorry off on a tangent.

 

If you did have a negative reaction it is more likely to be a minor reaction than a major one, and the recovery from the negative reaction is likely to take less time.

Thank you for the input. I’ll talk to my doctor beginning of the week and see if I can get a new prescription of it. I’ll start with a really small dose— like 1mg—- for a week or two and then increase if there are no issues. Hopefully it clicks something back. And I probably have had alcohol and shoveled food in my mouth hahaha

[Altostrata]

Hello, @markc2008

 

As I understand it, you did not have the absence of erections until after you went off Viibryd, is that correct? Is PSSD your major symptom?

 

It's a good sign PSSD has improved over 2 years. It probably will very gradually improve, as other withdrawal symptoms do. 

 

If I were you, I'd stop the strenuous drug treatments for your sexual functioning. They may be making your neurological upset worse. Your overwhelming anxiety over PSSD is also evident. You might seek counseling to deal with that. You need to let your body return to normal.

 

You had delayed orgasm on Viibryd, correct? I cannot see how reinstating Viibryd will restore your sexual functioning, it interfered with it. I can't tell the future, but I am dubious about this course of action.

[markc2008]

On 11/26/2021 at 7:13 PM, Altostrata said:

Hello, @markc2008

 

As I understand it, you did not have the absence of erections until after you went off Viibryd, is that correct? Is PSSD your major symptom?

 

It's a good sign PSSD has improved over 2 years. It probably will very gradually improve, as other withdrawal symptoms do. 

 

If I were you, I'd stop the strenuous drug treatments for your sexual functioning. They may be making your neurological upset worse. Your overwhelming anxiety over PSSD is also evident. You might seek counseling to deal with that. You need to let your body return to normal.

 

You had delayed orgasm on Viibryd, correct? I cannot see how reinstating Viibryd will restore your sexual functioning, it interfered with it. I can't tell the future, but I am dubious about this course of action.

Thanks for the response. Yes I functioned completely normal while on the viibryd. It’s more than just a lack of erection coming off. It’s pure no form of arousal, connection, romance, libido, confidence, desire. Numb genitals, yes pssd is my main issue, but I have memory issues, bladder emptying issues and constant muscle spasms since stopping. While I respect your opinion on stopping sexual treatments, I’ve been like this two and a half years and not having intimacy in my marriage for years is not an option. I’m just trying to do the most logical thing to try to resolve this. I don’t know if that means give it more time or reinstate?

[markc2008]

I wish there were some others on here that reinstated that could share their experiences, especially those that had sexual side effects.

[markc2008]

I am still having issues over two years after stopping Viibryd(vilazadone) and trying to weigh the risks and decide on whether to reinstate this far along. I still have muscle spasms, trouble off and on swallowing food, but my main issues are sexual side effects and weak urine stream due to my urethral sphincter muscle not involuntarily relaxing when going to the bathroom. I think they are all nervous system issues, and trying to see if its smart to reinstate a low dose of what caused all this to see if it calms everything down and hopefully returns me to normal. I didnt seem to have many noticeable issues on the medication, only a  few weeks after abruptly stopping. Is there anyone--especially someone who had sexual side effects after stopping--reinstate and successfully fix all of this?

[Altostrata]

I'm sorry, it can take longer than a couple of years to recover from withdrawal syndrome, including PSSD.

 

We do not have any recipes for quick recovery of either.

 

You might want to post your questions in pssdforum.org or in 

 

[markc2008]

I’m just really not sure if it’s worth the risk or not. I feel like after two and a half years it’s obviously more risky, but I also feel like this is permanent for me.. would I not be improving by now If I was going to get any better? I feel like reinstatement might be my only chance left..

[ChessieCat]

  

On 12/2/2021 at 10:36 AM, Altostrata said:

I'm sorry, it can take longer than a couple of years to recover from withdrawal syndrome, including PSSD.

 

We do not have any recipes for quick recovery of either.

 

[Altostrata]

@markc2008 many of our members have reinstated after quite a while off the drugs. This paper discusses a sample of them 

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

However, each case is different. We cannot predict if reinstatement will reverse your symptoms. It may, or it may not. We always recommend trying a very little bit first as as low-risk reinstatement, and expect very subtle improvement, if any -- not that your condition will be instantly reversed. Your nervous system still needs time to recover. Reinstatement provides only a crutch.

[markc2008]

14 minutes ago, Altostrata said:

@markc2008 many of our members have reinstated after quite a while off the drugs. This paper discusses a sample of them 

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

However, each case is different. We cannot predict if reinstatement will reverse your symptoms. It may, or it may not. We always recommend trying a very little bit first as as low-risk reinstatement, and expect very subtle improvement, if any -- not that your condition will be instantly reversed. Your nervous system still needs time to recover. Reinstatement provides only a crutch.

Thank you. I would say it is a hard decision but I mean I will always wander if I don’t try it if this doesn’t resolve. I have memory issues and muscle spasms but my main side effects are sexual. I hope reinstating helps.. even it if helps a little it’s worth it

[Altostrata]

As I believe I explained before, my impression is that reinstatement is a very long shot for sexual symptoms. It is more likely to resolve other symptoms.

[markc2008]

51 minutes ago, Altostrata said:

As I believe I explained before, my impression is that reinstatement is a very long shot for sexual symptoms. It is more likely to resolve other symptoms.

Well I don’t know what else to do. I do have muscle spasms and memory issues but yes my main symptoms are numbness in body parts and arousal issues. Wellebutrin fixed some of it temporarily but it stopped helping. It’s my only real option other than just wait another several years and hope it goes away 

[markc2008]

Just now, markc2008 said:

Well I don’t know what else to do. I do have muscle spasms and memory issues but yes my main symptoms are numbness in body parts and arousal issues. Wellebutrin fixed some of it temporarily but it stopped helping. It’s my only real option other than just wait another several years and hope it goes away 

Either that or get an implant and try to move past this horrible experience. Only two options.

[markc2008]

23 minutes ago, Heath said:

I came off Paxil too fast in 2006 reinstated and again tapered too fast  in 2013 reinstated. I tapered Zoloft too fast in 2017 reinstated. And I updosed once while tapering lexapro. Every time it took me about 3 or 4 months to feel better and about 6 months back to my normal self after the reinstatement or up dose. Each reinstatement was within a month or so of onset of withdrawal symptoms. 

Yeah I’m definitely way behind the time frame to do it. If you don’t mind me asking what we’re your symptoms? And they all went away?

[Heath]

1 minute ago, markc2008 said:

Yeah I’m definitely way behind the time frame to do it. If you don’t mind me asking what we’re your symptoms? And they all went away?

 the major ones were ocd, high anxiety, crying, weeping, fear, no sleep, no eating, muscles tensing and releasing, major pain in neck and back and muscle twitches. Yes those withdrawals went away once I reinstated. 

 

[Determined002]

Hi Markc2008,

in sorry about what you are going through, I know how hard to feel that way.

I'm feeling almost the same as you do.

Have been on tricyclic antidepressant called anafranil for 17 years, while using it I was having some side effects like too much sleep.

I quit that medication for 19 months now, while some symptoms disappeared such as irritability, anger lack of energy, but I still having the anhedonia and the sexual dysfunction. 

When I was on meds I had minor sexual dysfunction but was not annoying. 

Now as you described i feel like 70 years old man sexually. 

I thought with time things will improve but still nothing. 

Especially that I'm divorced since 2 years and still can't start a serious relationship cause ive lost my self-esteem cause of the sexual issues.

I know its good to wait to heal naturally but time is against me as I'm 46 now and can't live like this longer. 

So that I'm thinking about reinstating the meds and see if that would help 

If that works I'll then try to taper in a better way as I learnt a lot from this website. 

Please let me know if you managed to reinstate and how did it go. 

Wishing healing for everyone. 

[markc2008]

On 12/4/2021 at 6:30 PM, Altostrata said:

@markc2008 many of our members have reinstated after quite a while off the drugs. This paper discusses a sample of them 

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

However, each case is different. We cannot predict if reinstatement will reverse your symptoms. It may, or it may not. We always recommend trying a very little bit first as as low-risk reinstatement, and expect very subtle improvement, if any -- not that your condition will be instantly reversed. Your nervous system still needs time to recover. Reinstatement provides only a crutch.

I reinstated 2.5mg of the viibryd today(this morning).  I haven’t noticed anything negative so far, in fact, it could be a bit placebo but I feel a little more clear headed and some of my pelvic floor tightness I’ve had for quite some time has eased up some today. I hope this is a good sign of maybe all my symptoms from the past two years resolving but we will see. I am trying to cut these pills as accurately as possible. The doctor prescribed me the lowest dose which is 10mg and I am cutting them into quarters with a pill cutter. My question though, is any input on how long you would stay at this low 2.5mg dose before possibly increasing? If I don’t see anything much negative should I increase after a week or two? Thanks for the help.

[ChessieCat]

Moved multiple posts from the "Did antidepressant reinstatement work for you?" to markc2008's Introduction topic to keep history in one place.

 

@markc2008

 

When updating please here post in your Introduction topic.  Thank you.

[markc2008]

Second day and still nothing negative. Not a whole lot better yet either. Trying to decide whether to hold this dosage for a week or two or slowly increase the dose after a week?

[ChessieCat]

It generally takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.  It's good that you have not had any bad reaction to the reinstatement.

 

My suggestion for reinstatement/updosing is to wait for 1 week.  If after 1 week there has been some improvement, then wait for another week.  If, however, there is no improvement (and no worsening) then after the first week you might increase by a small amount.

 

Please update your drug signature with drug name, dose and date for that dose.  SA staff need to be able to see your drug history at a glance and not have to spend time searching back through your posts (and possibly miss information) to find it.  So whenever you make a change, please remember to update it.

 

Account Settings – Create or Edit a signature

[markc2008]

19 hours ago, ChessieCat said:

It generally takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.  It's good that you have not had any bad reaction to the reinstatement.

 

My suggestion for reinstatement/updosing is to wait for 1 week.  If after 1 week there has been some improvement, then wait for another week.  If, however, there is no improvement (and no worsening) then after the first week you might increase by a small amount.

 

Please update your drug signature with drug name, dose and date for that dose.  SA staff need to be able to see your drug history at a glance and not have to spend time searching back through your posts (and possibly miss information) to find it.  So whenever you make a change, please remember to update it.

 

Account Settings – Create or Edit a signature

Thank you so much. I haven’t seen much change. Maybe a little less brain fog, and on the negative maybe an ever so slight worsening of sensitivity in “privates”. Nothing significant enough to panic either way I think, so I’ll continue this route for a week and increase 2.5 mg after that If no change. Thank you for the input