Soup: starting Lexapro taper

[Soup]

@Roserdl do you feel the same everyday ? Or does it change ? I pretty well have the same pattern of symptoms everyday except sometimes I don’t get nightmares 

[Soup]

My daily stats 

wakeup around 6:30 am 

lay in bed doing affirmations over and over ( body temp is fairly stable ) ( heartbeat in head always ) 

8:15 am take my one tablet of Wellbutrin 150 mg XL

Get up get washed and dressed eat yogurt with berries ( cry) 

Spend the day distracting , go for 20 min walk , walk in grass , eggs, fruit , avocado for lunch . Sit on deck distracting . Mediations and affirmations . Usually eat at 5 pm salmon , salad, meat or that combo . Go to bed . Really notice cold patches on skin at this time . Temp dysregulation really starts in the evening . Watch gentle animal shows or other gentle shows . Pat dogs and talk to husband ( usually just cry hysterically ) go to sleep around 9:30 -10:00. Sleep usually for 4-5 hours then wake up sweating and try to just rest sometimes fall back asleep but then wake up with nightmares or vibrating or heart racing . Then start all over again the next day . Been going on for 5.5 months now . Not sure why I am writing this ……I guess just need confirmation that this will settle with time . My brain is always looking for that constantly ……

[Soup]

Just sitting here waiting for the train to arrive but it never does . When symptoms seem to never really change are we still healing? It’s like I am sitting behind a wall of glass I can see what I want but I can’t access it ……sending healing vibes to everyone here 

[Soup]

@RachelSusan when you were holding did your symptoms fall into a regular pattern . Mine are pretty well the same everyday and wondering if that is considered stabilization or do people  wait til they lessen . Just curious of your pattern as I am perplexed that nothing seems to get better but also not worse ????? I appreciate your kind words 

[RachelSusan]

@Soup Hi Susan,

 

These are great questions, and I will try and answer them to the best of my ability. 

 

For the most part I had consistent symptoms, that would be feeling like crap in every way, every day.  Feeling like total sh*t. Same old awful symptoms on repeat. Then I had random symptoms that would be layered on top of these standard symptoms.  These random symptoms would come and go at will. Both the random symptoms and the standard symptoms lasted for months and months.  Slowly I saw a little improvement. 

 

I am not sure if there is a standard stabilization definition on this site. Brassmonkey and the other mods might have a definition.   I had one opinion early in the process and a slightly different one later in the process.  First the early view. In my mind it was waiting for the majority of the symptoms to come way down to a tolerable level. Later in the process I changed my opinion and to me stabilized meant almost no symptoms at all. I refused to taper until all of the symptoms were gone except for maybe one or two random symptoms that would only popup occasionally. I have read that other people on this site are not as strict with their definition as to what stabilized means to them.  They call their stabilization "withdrawal normal".

 

I know this had been going on 5 and half months for you. I know you are desperate to find a way out. We all keep telling you to hold because we believe that to be true, but if you are anything like I was you probably just want to do something, do anything for that matter.  I still believe it is best for you to hold but that is only my opinion. What are your thoughts?  What are you thinking might help?

 

One thing you can do is keep an eye on your Wellbutrin prescription.  Sometimes pharmacies will change brands and there isn't a lot you can do about it.  Not all brands are the same even though they are supposed to be. If you notice a change in brand make sure you do a crossover from one brand to the next. 

 

I know you are practicing a very healthy lifestyle.  Keep it up.  Just get through each day the best you can and know that things will improve for you. People would tell me that but when I was in the thick of it I found it hard to believe.

 

One last question. Is it correct that you had all of your symptoms explored for other possible explanations and you are in otherwise good health?  And no I do not think anything else is going on, at all.  Just making sure.

 

 

 

 

[Soup]

@RachelSusan I had a full physical exam at the beginning of January and nothing out of the ordinary was found  .I want to hold but that niggling thought is about the Wellbutrin causing this . I have a very good pharmacy that only gives me the name brand ( I requested that years ago ) they no how much I have struggled over the years .I always have taken it at 8:15 am . The only things I Ingest are water and Whole Foods . I walk everyday and keep pretty well the same routine . 

So at some point you just waited till all the symptoms were gone?Did you have to wait like a year or so ?  That’s what I want to do but so tired of the same thing everyday  the only thing that seems to fluctuate is the blurry vision but everything else is pretty well like clockwork. You are very kind to talk to me it really is appreciated . You seem so far away but close at the same time . I guess when you have been in the same war it builds a comradarie even on the internet ❤️

[RachelSusan]

@Soup Hi Susan,

 

I am very pleased to correspond with you.  I had lovely, wonderful, patient people that helped me on this site.  If I can help even one person it makes me feel better.  I truly wish I had a magic wand and could wave all of this pain and agony away for you. The suffering that everyone on this site goes through is just staggering. Yes, it is indeed like being in a war.

 

It sounds as if you are doing everything in your power to help yourself.  Good for you.

 

In answer to your question, I needed to wait a year or so but I did not. I waited about 9 months and during that 9 months I up-dosed and made what were for me unfortunate choices (yes I tried some too early in the process tapers).  I only made it worse for myself.  I had brutal ups and downs. I eventually learned to listen to my body. If I was in agony I did nothing. If I felt better I tried a little taper. It feels like counterintuitive advice. We are geared to think if we are in pain we do something and then the pain stops.  Here on this site we are usually advised to do hold, except when reinstating is in order.  Hardest thing in the world is to do nothing.  OMG, it is hard.  But for me, it was the best advice I ever received.

 

 

[Soup]

@RachelSusan thank you for your opinion much appreciated . I will try not to rely too much on your kind words but will probably continue to ask for them any way . Nobody else here really talks to me too much so it nice to have at least one person who I can converse with . I hope you have a beautiful day full of love ❤️

[Roserdl]

On 7/5/2022 at 12:31 PM, Soup said:

@Roserdl do you feel the same everyday ? Or does it change ? I pretty well have the same pattern of symptoms everyday except sometimes I don’t get nightmares 

My symptoms are pretty much same with some relief in evenings of the super acute depression.  Are you addressing your gut biome?

[Soup]

@Roserdlyes been taking care of that with prebiotic and probitioc foods . Sorry you are suffering as well . Just wish something would get a bit better . hugs 

[Roserdl]

2 hours ago, Soup said:

@Roserdlyes been taking care of that with prebiotic and probitioc foods . Sorry you are suffering as well . Just wish something would get a bit better . hugs 

Very good.  Sauerkraut and keifer are excellent as well.  I'm sorry for all of us here.  I'm slowly tapering with another 2.5 mg off.  You WILL stabilize

[Soup]

@Roserdlgood for you continuing with your taper you should be extremely proud of yourself . I am losing hope of stabilizing 😢 do you feel you have stabilized or going to just push through ?

[Roserdl]

I'm not sure.  I might just hold and stabilize as I've talked to numerous people who stabilized on reinstatement but took 1 to 2 years.  The stories really are all over the map.  Some reinstate and feel much better and do slow tapers.  I didn't quite realize it could take that long for a reinstatement to work but according to the people I talked to who went this path, they said my symptom improvement rate was going really well.  I'm also not windows and waving.  Just slow improvements.  My vision is massively improved after dropping back from 65 but the depression got worse.  On was really interesting.  She went into withdrawal twice one reinstating and once staying off.  She said recovery was the same duration both times.  She went into withdrawal again after second taper and recovered.  I'm meditating on it.  

How are you doing?  Any glimmers at all.

[Soup]

@Roserdl just the same thing here for me I do not feel any improvements at all. Basically the same thing everyday . Don’t get worse don’t get better kind of stuck in limbo . Had a massive cry this afternoon in the yard . I have been a big gardener my whole life and thought I would go out In the garden and do some weeding but everything looks so weird I just started bawling my head off . Husband had to come and get me and try to console me which of course made me feel even worse . I sure hope this gets better having a hard time seeing the light . Again I was doing just fine last year so I do not know what Is in those antibiotics but they really destabilized me Bad . I pray every minute for this to

Pass . Stabilization seems to be what everybody here says work and I will admit after my crash in 2017 things finally did get better in 2019 ( was able to participate in my daughters wedding and go on a trip ) just feeling sorry for myself and all of

us here 

[Carmie]

Dear @Soup

 

Yes, this can be such a hard journey, shedding tears certainly comes with the territory, I’ve done a lot of that myself and my heart goes out to you.

 

I hope you will be able to enjoy your gardening again. I’m not a gardener, but I do have plants on my windowsill as it’s nice to see greenery, I’ve managed to keep most of them alive😁. I have a few artificial plants that look real too in my unit, they’re easy to take care of, just wipe them over every now and again to get rid of the dust. 
 

Sending hugs your way🤗

[Roserdl]

50 minutes ago, Soup said:

@Roserdl just the same thing here for me I do not feel any improvements at all. Basically the same thing everyday . Don’t get worse don’t get better kind of stuck in limbo . Had a massive cry this afternoon in the yard . I have been a big gardener my whole life and thought I would go out In the garden and do some weeding but everything looks so weird I just started bawling my head off . Husband had to come and get me and try to console me which of course made me feel even worse . I sure hope this gets better having a hard time seeing the light . Again I was doing just fine last year so I do not know what Is in those antibiotics but they really destabilized me Bad . I pray every minute for this to

Pass . Stabilization seems to be what everybody here says work and I will admit after my crash in 2017 things finally did get better in 2019 ( was able to participate in my daughters wedding and go on a trip ) just feeling sorry for myself and all of

us here 

You are in a very challenging situation which requires endless endurance and faith.  You are not feeling sorry for yourself, you are expressing deep pain.  I'm a Gardner too and the most I could do was plop some plants in.  Don't even water but there has been enough rain.  Love to you

[Soup]

@Carmie thank you for your heartfelt words means a lot . Yes I miss that FEELING I had gardening so much . I just cannot seem to get back to where I was last year . I hope as time goes on I can get back there . Hugs to you ❤️

[Carmie]

26 minutes ago, Soup said:

@Carmie thank you for your heartfelt words means a lot . Yes I miss that FEELING I had gardening so much . I just cannot seem to get back to where I was last year . I hope as time goes on I can get back there . Hugs to you ❤️

Well, I really, really hope you get the pleasure of gardening back again soon Soup, it’s awful how these meds can make us so anhedonic. Some days I just go through the motions of doing things anyway, just for some distraction. I can feel some joy here and there though, but a lot of the time is just trying to get through the day the best one can. 

When I was staying at my sister’s place down the Coast one day a while back I hopped on a tram and went to have a little look around. I remember that day as being one of the worst days of having anhedonia, I literally couldn’t feel any pleasure. I was well and truly so numb. I’m used to everything around me being surreal, due to CFS brain fog, but that day I was completely numb on top of that, I barely felt I was there. 
 

I really hope you get back to where you were last year soon, this journey takes such a long time. Every bump in the road takes forever to stabilise from, I’ve had many of those and even when they took ages I always ended up stabilising again. It’s not a matter of will we stabilise but when. 
 

Take care🧡

[Soup]

@Carmie I am so sorry you have had so many bumps in your journey of healing . I hope that things are a bit better now . I appreciate your kind words and really hope I can get back to where I was 

[Soup]

So tired of the feeling of wanting to run into traffic ( I won’t just so tired ) I wish it would settle . I try to ignore and distract my best but just fed up is all . Will it ever quiet down ?????? 

[Roserdl]

3 hours ago, Soup said:

So tired of the feeling of wanting to run into traffic ( I won’t just so tired ) I wish it would settle . I try to ignore and distract my best but just fed up is all . Will it ever quiet down ?????? 

I completely understand.  I'm so sorry.  Pm anytime

[Carmie]

7 hours ago, Soup said:

So tired of the feeling of wanting to run into traffic ( I won’t just so tired ) I wish it would settle . I try to ignore and distract my best but just fed up is all . Will it ever quiet down ?????? 

Dear Soup, 

 

Yes, this journey can certainly feel like it’s all too much, I’m really sorry you’re struggling. Most of us on this site are pretty much tired of what we are going through, it’s certainly no picnic. 

That’s awful that antibiotics and your UTI triggered the intense waves. It’s amazing how destabilised our brains can still be for quite some time, even after being off the meds. Don’t give up hope, your poor little brain is putting up a mighty fight every day to regain equilibrium. You will eventually stabilise again, the only thing is the amount of time it will take. If we knew exactly when, it would be easier to bear, wouldn’t it?
 

All we can do some days is take a minute at a time, I’m  sending hugs your way. Feel free to keep journaling your thoughts on here, as everyone here is in the same boat and can understand the pain you’re going through, even though our situations are all a little different🤗🤗

[Soup]

@Carmie thank you for your kind words ❤️

[Roserdl]

Good morning soup. Sending light your way.

[RachelSusan]

@Soup Hi Susan,

Just checking on you. I see that yesterday wasn't so good for you. How is today looking?

[Soup]

@RachelSusan how kind of you to check in on me. Everyday is just the same horror show . I feel no changes at all. Right now I am sitting on my deck crying . I still am shocked everyday that almost 6 months have gone by and I am the same . 

[Soup]

@Roserdl sending you peace and light and healing . Better days are coming 🙏🏻

[Soup]

Wow the vibrating /shaking last night was so brutal . I wonder why that happens ? It’s like my body is struggling to get me to wake up …..absolutely horrifying . Have others experienced this? Sending healing vibes to all here and for better days to come . 

[Roserdl]

Hey there

 

I had a on off full body tremor the first couple months.  It got really bad lying down.  When they transferred me from the  hospital in the ambulance to a psych ward, I shook so hard the entire gurney shook.  It's completely gone now, it does go away. I had it half the day.   I'm so beyond sorry you are going through this...

[Soup]

@Roserdl I am so incredibly sorry you had to go to the hospital like that . What a terrible experience for you . You are so incredibly strong absolutely amazing . I have had this for awhile some nights worse than others last night it just went on and on . Just tired of it all just like you sweets . Hoping for days of lessening symptoms for us both . Hugs ❤️

[Soup]

I don’t know why I am sharing this but I talk to a nervous system therapist a couple times a week . She’s not like any other therapist as we mostly just talk about my physiology and how it is reacting . It doesn’t make me better but she does give me a barometer as to how I am progressing better than myself as I am so deep in it but she sees me weekly and can see small signs of progress to share with me to keep me going forward. It does help in a small way . She helped me before after my taper and I believe she gives me enough feedback to keep me going this time ( she does not fix me ) 

[RachelSusan]

@Soup Hi Susan,

 

Yes it is the worst. I hated it.  It eventually goes away.  Hang in there my friend.

[Soup]

@RachelSusan did it settle even when you were on the drug ? Like when holding ? 

[RachelSusan]

Vibrating/Shaking started when I went cold turkey. It continued after I reinstated for a few months and then slowly, very slowly,  started to calm down and then eventually went away.

[Soup]

@RachelSusan thank you for sharing . I guess the antibiotics caused a similar reaction as a cold turkey 😭 I sincerely hope what I am doing is helping my system to find calm . I continue to take each day quietly with good food  , light walking  and mediations and affirmations . Oh and I throw the odd shout out to the universe for healing . Thank you for your kindness ❤️

[Soup]

Got 6 hours of sleep last night with no nightmares . Still woke up vibrating and everything’s else is the same but grateful for the sleep .