Soup: starting Lexapro taper

[ChessieCat]

13 minutes ago, Soup said:

Have you heard of other people with skin they can’t feel well ? 

 

Q:  Did you read the labels on the diagram I posted?

 

See the label bottom right of the diagram.

 

I suggest you start doing some regular (throughout the day) relaxation techniques.  It doesn't have to take long.  Just getting up from what you are doing and looking out the of window and taking a few deep breaths can help.  Or if you cannot get up from your desk if you are at work just stop what you are doing and close your eyes and "take a mental break" and think of something pleasant.

[Soup]

@ChessieCati looked at the diagram thank you very much  I do a lot of breathing and quiet looking around during the day as well as meditations . I do not work so have the luxury of being able to do these at my own will . I appreciate Your time 

[Soup]

So have had 3 nights of what I would consider fairly good sleep ( broken but still equal to 6 hours ) most I have gotten in the last 5 months . Is this a sign of things settling maybe from this antibiotic setback ? I know nobody really knows the answer but was hoping for some idea that this could be at least going in the right direction ? Always worried the Wellbutrin is doing something although last year had minimal effects from it ???? I have not introduced anything except for nightly mag footpaths and managing a 20 min walk everyday . Not sure what I am looking for just struggling so much still ….  

[RachelSusan]

@Soup

 

Hi Soup,

 

I saw your post on Mezzer's page, but came over here to answer you as I didn't want take over their page with a conversation between you and I.

 

I am really sorry to read that you are in withdrawal.  It's a terrible place to be. I wanted to offer my support to you.  

 

Just a little about my background so you know who I am. I was in the same place you are in and I was there for a long time. I am now completely off anti-depressants and I am not experiencing any sort of withdrawal. I have no magic answer, it took years.  I have experienced your suffering and I wish you the very best in improvement.

 

By the way, I also found that at one point antibiotics brought about more withdrawal symptoms.  It did pass for me and additionally I no longer have any problem with taking antibiotics.

 

 

[Soup]

@RachelSusan what a balm to my weary soul to see your beautiful words . I am really struggling and would love a person to support me in this ongoing battle . I had such a tough go coming off the other drugs but after about 1.5 years I got back on my feet and was working a plan to get off the Wellbutrin xl . ( very difficult as can’t cut the pill ) pandemic hit so thought I would get healthy put a plan together and then start last year . I got a uti and then antibiotics and now here I sit 5 months later barely making it through the day .I have been told it would be best to wait to get more stable to taper . Did you wait ? Was your taper awful or because it was s slow you were able to function somewhat ? I am quite ok with going slow if I could be somewhat functional . Thank you for your kindness ❤️ By the way my name is Susan 😊

[RachelSusan]

@Soup

 

Hi Susan,

 

Nice to meet you officially.

 

I went off cold turkey and then reinstated.  It was awful at the beginning.  After I reinstated I tried to taper before I was stable, so no I did not wait.  It only got worse from there.  I kept trying to find just the right amount of drug to take thinking if I could find the right amount I would feel better. But for me, there was no right amount, what was right for me was to just hold and do nothing.  It wasn't until I had a long hold, months and months, that I started to feel a little better. Once I started tapering I would be fine for a while and then I would try and go a little faster than what was good for my body and the symptoms would come back. Finally after a few long holds and tiny tapers, like 3% or somewhere around there I was alright. The last year of my taper was fairly easy. So to answer your question, it wasn't awful because I went so slow, it was awful because I didn't go slow enough for me.

 

Every single person on this site is different.  Anything I tell you is based on my experience.  I can only tell you what worked for me and it may not be what works for you.  For me it took months and months to become stable. So based on my experience I would suggest that you hold.  I suspect it's not what you want to hear, and again this is all based on my experience.

 

I offer you my support and I hope you find what works for you. It is an awful position you are in and I totally sympathize with you.

[Soup]

@RachelSusanyes I think a long hold is the only way to go from here ( I can’t imagine getting worse but I am sure it could happen ) it’s so hard because of the unknown of course and yes we are all so very different . But my symptoms are almost exactly the same as last time and it took me about 1.5 year to get on my feet from that so I am praying that maybe it could be a bit shorter this time . I can only take it a day at a time . My son gets married next July and i so want to be present for it so badly . If I got up on my feet from coming off k and lex I must be able to get back up from the antibiotics 🙏🏻 Thanks for your support much appreciated . So happy you are on the other side 

[Roserdl]

On 6/22/2022 at 6:59 PM, Soup said:

Skin issues....

I am stabilizing on a reinstatement and it has been slow improvement not windows or waves.

 

I also lost body sensation with greatly diminished skin sensations but this has steadily improved but not 100%

 

I'm so sorry your struggling so hard.  Hope you find improvement soon

[Soup]

@Roserdl thank you for sharing your experience . I actually got some decent sleep last night so hoping that is a sign of my system settling down 🙏🏻 I hope you continue to feel better 

[Soup]

Woke up today completely despondent crying hysterically feeling so trapped and wanting off this horrid Merry go round . Confused why everything just kind of stays the same everyday like I am frozen in time …… this setback is brutal and so long lasting ) to me anyway ) I feel Like a frozen rabbit not knowing what to do or where to go ….. sorry needed to vent today feeling very sorry for myself 

[wantrelief]

 

6 minutes ago, Soup said:

Woke up today completely despondent crying hysterically feeling so trapped and wanting off this horrid Merry go round

I am so sorry you are feeling this way.  I completely relate if it is of any comfort. We just have to keep going day by day and something will change, as hard as it is to believe.  You had it happen before so it will again but it is SO hard to do this in the meantime.  After three years of tapering, I finally felt myself again last year but then had a setback due to stress so I am also reeling from being right back to feeling everything I had been when I started this latest taper.  So I really really understand how you are feeling, Soup.  It is just awful.  We will get there again though.  Hang in there Soup.....you are not alone.

[Soup]

@wantrelief thank you for your kind words. Just really feeling sorry for myself in this horrid mess  . Always thinking the Wellbutrin is stopping healing but then if that was the case why was I fine for the last 3 years ???   Till the antibiotic …… so sorry for your setback . Praying for us all 

[wantrelief]

@Soup:  It is hard not to feel sorry for ourselves at times.....that is okay.  Our lives have been upended so it is only natural to feel sad about that.  I am not an expert by any  means but I don't think the Wellbutrin is stopping healing.  I think you are right that you were fine until the antibiotic so it makes sense that is the cause of this recent setback.  Plus there have been others who have experienced the same problem with antibiotic use. I am thinking of you and really hope you get some relief soon.

[Soup]

Writing this symptom chart for my own record

DR/DP 10/10

brain fog 10/10

skin numbness 9.5/10

constipation 10/10

heart beat in head 10/10

rushing noise in ears 9.5/10

no appetite 10/10

temp dysregulation 9.5/10

crying 9/10

andehonia 10/10

monophobia 10/10

cold patches 8/10

dry wretching 0/10

nausea 0/10

burning 0/10

night sweats 4/10

abilty to sleep 5/10

anger 3/10

Despair 10/10 

praying for these numbers to keep coming down 

[Soup]

@Colonial I see you came off Wellbutrin Xl . I wanted to ask if you cut the xl to taper down ? Congrats on being off . I want to line up how to get off this once I get more stable from my setback . Thank you for your time and knowledge .

[Roserdl]

Hey Soup

 

I think wantrelief is right.  You healed before on it and there are lots of stories here with eople stabilizing on multiple drugs or reinstatement.  I think it's the disequilibrium from antibiotic too.  I am so sorry you are hurting like this and you had a tough blow with this setback.  I think it's just time so don't torture yourself over wellbutrin and pm anytime if you need a vent.  I'll add you to my prayers.  Hold on and try to distract if you can

[RachelSusan]

@Soup Hi Soup,

 

I just read your symptom list. I am sorry that you are going through this. I mentioned to you before that antibiotics set me back at one point as well. It just takes so darn long for us to recover, but we can recover.

[Soup]

@RachelSusanthank you for your kind words . I have so many symptoms although I am sure it could be a lot worse . I at least do get some sleep and I can eat so grateful for that but of course I would rather feel like I did last year . Praying to get back to that kind of stability again . I hope you have a good day ❤️

[Soup]

@RachelSusan when you had your antibiotic setback did you just wait it out ? Did it really bring back symptoms? Did they settle after awhile? 

[Soup]

Just venting as I know this cannot be changed . But I am so weary and looking for those teeny tiny signs of healing .I still cannot believe I am sitting here dealing with this again . If anyone has positives about antibiotic setbacks /recovery would love to hear them . Healing for all ❤️

[RachelSusan]

@Soup Hi Soup,

 

Yes, antibiotics really did bring back all my symptoms. Or at least I believe it did because it happened right after I started taking them.  But as we all know withdrawal is a puzzling situation so we never know anything for sure.  And yes, when the symptoms came back I just waited it out.  I waited because I learned that for me it was best to do nothing.  I believe that any change in my medications would only make it worse. During that period of time anything I did would make my symptoms worse. Too much exercise, drinking iced tea with caffeine, and getting emotionally stressed are all good examples. Also, I don't have an issue now with antibiotics. It was just during that time period. 

 

Soup, I can only share my situation. I do believe that the best thing for you to do is to do nothing, to wait it out, but my suggestion is predicated on my experience. It's all I know.  What you can do, and what I did, is get a lot of opinions, and some of them will be diametrically opposed, think about them, and decide which feels right for you. Of course I gave more weight to an opinion expressed by a moderator here on this site vs my great Aunt Agnes.

 

I see ChessieCat has answered you about this.  ChessieCat also gave me some guidance during my most difficult times. The advice I received from Chessie was right on for me so I have a tremendous  amount of confidence in her.  Again, nothing wrong with asking others as well, I did it too, but Chessie is a powerful resource and I think it would be wise to put her thoughts into the mix.

 

I mentioned I have read your symptom list.  They are indeed painful and debilitating. I've had a some of them and a few others of my own which is why I feel so much compassion for what you are living through. I know you are going through hell. 

 

So sorry you are living this nightmare.  It will  improve. It just takes a lot longer than we think possible.

[Soup]

@RachelSusanthank you for your kind words as always so needed these days for me . I know holding is the right thing to do for sure but so incredibly difficult especially since I am over 5 months now since the antibiotic . It is comforting to hear others have had these kind of setbacks and got better thusly why I  ask for others experiences . I appreciate you sharing yours . Did your setback happen while you were tapering ? 

[RachelSusan]

@Soup I can't remember if I was tapering or if I was holding while waiting to stabilize.  I made a lot of unknowable decisions early on in this process so I really messed myself up.  I had symptoms for a few years, both during long holds and during tapers.  The good news is it gradually got less and less.  Sometimes though I would think I would be doing real good and it was all behind me when suddenly a symptom would just start up and be with me for weeks. Sometimes I had symptoms that would hit me everyday at the same time and then go away in a half hour. It was a true roller-coaster.

[Soup]

I am so scared 😭

[RachelSusan]

@Soup Soup, I know you are scared.  I was too. I was frightened beyond belief. I had the pain of the withdrawal and the fear of being stuck in that situation and never recovering.  Can you articulate if your fear is similar to what mine was, or if not what you are fearful of? If it would it be worse to do discuss your fear then please do not feel pressure to do so. Just know that those of us on this site do know what you are experiencing right now in terms of withdrawal pain and agony and we have a lot of compassion for you.

[Soup]

 

@RachelSusan I am so scared that this setback will not get better . That if I don’t get off the Wellbutrin I will never get up from this antibiotic setback . I was doing so well last year and now I am a quivering frozen rabbit full of fear and so many symptoms . I feel trapped and don’t know which way to turn . I want to hold because logically I know my system  needs that but when I see no improvement it gets so hard to think I am Missing something or not doing what I should to help myself . Having a hard time seeing this getting better . I have tons of support at home live in a very stable home ( except for me) with people who understand and are kind . I eat well and exercise everyday but I feel so stuck and terrified 

[Roserdl]

Soup

 

You stabilized on Wellbutrin before.  It wasn't the cause of this episode.  Time should do it although I know how waiting is the worst answer when we want relief last week.  Much love to you

[Soup]

@Roserdl thank you for your kind words . It would just be nice to see some shift or change . It feels so permanent . Just went for a walk and the world feels and looks so wrong . I hope you are having a better day ❤️

[Roserdl]

Good for you for walking.  Most I could do was sit on steps for a few minutes.  I'm fighting not giving up, I am right here with yeah.  Sending love and encouragement

[wantrelief]

2 hours ago, Soup said:

It feels so permanent . Just went for a walk and the world feels and looks so wrong

Ugh, I know exactly how you are feeling.....you describe it well.  I am really sorry you are having to go through this.  It does feel permanent but it isn't as you've experienced before, it eventually shifts.  I know the waiting is maddening though.  Hang in there, Soup.  

[Soup]

@wantrelief you would think knowing that I got better last time it would help but it doesn’t …. How odd isn’t it ? My brain just tells me that it is so much worse this time …. I use to love my brain right now I am not loving it in anyway . Hoping for better days for all of us ❤️

[wantrelief]

11 minutes ago, Soup said:

you would think knowing that I got better last time it would help but it doesn’t …. How odd isn’t it ?

I know what you mean. I had a nice window for a year but now am back to feeling awful again. I also can't imagine feeling better again, it is as if that time period didn't happen.....so it doesn't sound odd to me at all.  But we must try to hold on to the fact that we did so will again. 

 

11 minutes ago, Soup said:

I use to love my brain right now I am not loving it in anyway

Aw, I get this feeling too. I was just thinking earlier how i miss my brain. We are still here though underneath the rubble.  I am trying to love my brain even if it isn't at its best at the moment. 

[RachelSusan]

@Soup You will stabilize again. I know it is awful and frightening. You will feel better again.

[Soup]

@RachelSusan I pray for it everyday such an awful place to be not really knowing what to do and feeling so awful . Thank you for your kind words 

[Soup]

Can’t even get relief in sleep wicked horrifying nightmares I feel so doomed yet want so badly to be better 😭

[Roserdl]

You are not doomed.

 

You are healing

 

You are transitioning