☼ RachelSusan: Zoloft - on, off and reinstated

[RachelSusan]

@Soup Hello!!!  It's good to hear from you. Overall I am indeed doing better, but it has been a very slow recovery. It has been 90 days since the crash and I still have some symptoms although they are mild.  However, I have had a very few distinct waves, something I did not have from the Zoloft situation.  I had a 7 day wave that finished two days ago. It was intense with tremors that lasted about 15 hours a day, even waking me up when I was trying to sleep, along with intense insomnia. I went back in my calendar to see if anything happened that could have started this last wave. I saw that I had a pneumonia vaccination the day before the wave started.  Could that vaccination had anything to do with this wave? I don't know. I won't ever know.  For me that is what is so destabilizing about out situation. It is the not knowing.

 

I'm going to go over to your page now and ask you about yourself over there.

[Thorin]

Hi RachelSusan. Just dropping in to see if you’re doing better? I realised that I barely leave my little ‘spot’ on this site and thought I would venture out and see how people were doing. Sounds like things have been up and down with an overall positive trend. Hang in there!

[RachelSusan]

@Thorin Hi.  I am very glad you ventured out and stopped by my page. I had been doing pretty good however right now I am in another wave. It is interesting that I started an antibiotic at the time my wave started.  I can't help but wonder if it started this wave. I have done some searching on this site and I have seen that some people have posted having no effects from antibiotics but some people have experienced problems. I am hanging in there but have been rather low-key on this site since I have not been feeling terrific. I am sure better days are right around the corner.

[Soup]

@RachelSusan so sorry to hear you are in a wave . These antibiotics can definitely cause issues . I hope this passes quickly for you  .

[RachelSusan]

@Soup Thanks for stopping by.  I have been thinking about you during my current wave. I was thinking of you because of the antibiotics.  What a mess we find ourselves in, right?

 

I have been following your thread and I'm very happy that @Go2zero is helping you. It looks like you are in excellent hands. Wow, they are really good and willing to test everything on their end as well. I am impressed.

[Soup]

@RachelSusan so sorry for your recent experience it is awful . Just want to send you a big healing hug  it’s not a nice place to be at all . 
Are you managing sleep ? 
what antibiotic did you take ? Just curious if it was one I took is all . 
Take good care 

[Carmie]

Hi @RachelSusan 

 

I’m very sorry you’re in a wave right now. Like Soup, I’m curious which antibiotic you took too. 
 

Sending hugs your way🤗

[RachelSusan]

@Soup @Carmie

Hello Soup and Carmie,

I took azithromycin this time. I have taken other antibiotics while in withdrawal with no problem whatsoever. I don't know for sure that the azithromycin caused this wave, I do know that the timing was very suspicious.

 

Soup, I know you have a problem with this. What antibiotic did you take? Carmie have you ever had any sort of problem, or were you just never in a withdrawal situation and needing antibiotics at the same time?  If you did have a problem I would like to know what you took.

 

Soup, for the longest period of time I have had sleep issues however during this wave I have had nights where it got really bad and I slept around one hour (my fitbit confirms this bad news in the morning).  The last few days I have been sleeping around 5.5 hours. Not good but better than one hour. What are you averaging?

 

 

 

 

 

 

[Soup]

@RachelSusan I took macrobid first but I think it was the Suprax that threw me off the cliff . 
This last few weeks I am Actually getting  about 7 hours sleep and hardly any nightmares . 
I am sorry you are struggling with the sleep it’s so hard and not really anything can help it . 

[RachelSusan]

@Soup Wow, it's great you are getting sleep. I'm so happy for you.  For me, the lack of sleep is one of the worst parts. 

 

Thank you for the information regarding the macrobid and the Suprax.

[Thorin]

12 hours ago, RachelSusan said:

@Thorin Hi.  I am very glad you ventured out and stopped by my page. I had been doing pretty good however right now I am in another wave. It is interesting that I started an antibiotic at the time my wave started.  I can't help but wonder if it started this wave. I have done some searching on this site and I have seen that some people have posted having no effects from antibiotics but some people have experienced problems. I am hanging in there but have been rather low-key on this site since I have not been feeling terrific. I am sure better days are right around the corner.

Hi RachelSusan. Thanks for dropping by. Sorry you’re in a wave but I’m glad you’ve been doing well over all. I’m always happy to hear when people are generally doing ok! I have read of people reacting to antibiotics but haven’t taken any myself since I started tapering all though I do have to have some dental work done that I’ve been putting off which will require antibiotics. I’ve been low key the last few days as have a lot going on in my personal life (as happens on occasion) and I am finding I need to withdraw from the world a little (briefly) until I get through it. Life can be hard work as all of us on here know! I hope your wave passes soon and that you’re thinking about the days where you won’t have to worry about waves anymore. Those days are coming! Hang in there!

[Carmie]

6 hours ago, RachelSusan said:

@Soup @Carmie

Hello Soup and Carmie,

I took azithromycin this time. I have taken other antibiotics while in withdrawal with no problem whatsoever. I don't know for sure that the azithromycin caused this wave, I do know that the timing was very suspicious.

 

Soup, I know you have a problem with this. What antibiotic did you take? Carmie have you ever had any sort of problem, or were you just never in a withdrawal situation and needing antibiotics at the same time?  If you did have a problem I would like to know what you took.

 

Soup, for the longest period of time I have had sleep issues however during this wave I have had nights where it got really bad and I slept around one hour (my fitbit confirms this bad news in the morning).  The last few days I have been sleeping around 5.5 hours. Not good but better than one hour. What are you averaging?

 

 

 

 

 

 

Hi again RachelSusan, 

 

I’ve been tapering for many, many years and I might have taken antibiotics during this time, but can’t remember exactly as I have severe memory problems due to CFS. I don’t remember ever reacting to anything. I’ve had anesthisia too and I didn’t react to that. With our brains so all over the place though I’m sure we might end up reacting to something we didn’t react to before, or vice versa. Our poor little brains don’t seem to know what’s up or down. 

I’m really sorry that you’re having such problems with insomnia. I know there’s no miracle cure to fix that, but do you wear blue light blocking glasses in the evening and go into the sunlight first thing in the morning? I get insomnia at times too, but it’s mainly when I have too much on my mind and can’t switch off, also struggling to breathe makes it hard to get comfortable to fall asleep. I wake up early morning too. 
 

I hope this wave doesn’t last too much longer for you💛

[ShiningLight]

On 2/15/2023 at 7:48 AM, RachelSusan said:

I had been doing pretty good however right now I am in another wave. It is interesting that I started an antibiotic at the time my wave started.  I can't help but wonder if it started this wave.

 

Yes, many serotonin receptors in the gut as you probably know. I hope you feel better soon.

 

That's one of the reasons why c diff gut infection is so awful. Decimates the gut microbiome, then antibiotics to cure the infection. I always get this terror when I get c diff and I think that's why.

[RachelSusan]

@ShiningLight Thank you for the information.  I now recall that I have read what you are telling me on this website but for some reason the information did not register or stick with me. With that said, your information is very valuable to me and I appreciate it. It is one of those "ah ha" moments.

I just read your post on your thread about tremors and Klonopin. For whatever reason, one of my body's main reaction to anti-depressants, gabapentin, steroids, and antibiotics seems to be internal tremors and sometimes external tremors in my hands. The absolute worst.

 

 I know you have been dealing with a lot so I always appreciate when you are able to come back and post. Thank you.

 

[RachelSusan]

I've come today to post about my past elevated heart rate experience, while in withdrawal. 

 

THIS HAPPENED IN THE PAST - File it under heart palpitations.

 

When I was in withdrawal from Zoloft I had a time when I experienced an accelerated heart rate, somewhere above 180 bpm, while at rest. This sustained for several hours before I decided to go to the emergency room. With the drive there and the time I waited to be given medication at the ER the overall time in this situation was perhaps somewhere around 5 hours.  My recollection is not 100% clear given it was about 6 years ago.  This situation caused my doctor to send me to a cardiologist for follow up and no indication of heart disease was found. I had a few more of these types of epsidoes during this period of time. The doctor that was working with me to get me off the Zoloft went on to prescribe a medication I could take at home if needed so I didn't have to keep returning to the ER. Thankfully I only had to use the home medication one time because the episodes either resolved themselves quickly or the accelerated HR never got quite high enough for me to use the medication. 

 

I share this now because I just read on this site about another member that is sadly having medical issues that sound frightening.  Their situation is different with what sounds like a different cause but it gave me the idea that I should post my story because it could possibly help another person that finds themselves in a situation like I was in.

 

I was very fortunate that I was able to get medical care, and at that time I had a doctor that worked with me on the Zoloft taper. I know that right now most people can't find someone to help them or for a variety of different reasons just aren't getting what they need.

Edited February 20, 2023 by RachelSusan

[Soup]

@RachelSusan I am sorry to read you are having another wave . It’s all so awful . I just wanted to say that my father in law had a pneumonia shot last fall and it caused him to not feel well for a bit and he has not been on the drugs we have been and of course as you know the antibiotics are what set me back so badly . So I would think that maybe those two together hit your system a bit hard and it will just  take a bit to get back . I hope your system settles very quickly and sending you a big hug . 

[RachelSusan]

@Soup Thanks for stopping by.  Seeing your name always brings a smile to my face. I'm very symptomatic these days. Nausea everyday, internal tremors, headaches, insomnia. The works. How are you feeling?  I hope you are feeling better than I am.

 

I have seen the video that Go2zero made. It is fantastic. I think it will help a lot of people. I'm very impressed with the quality of the video.

[j1290]

Always nice to get an update on you, RS, even if things are in a wave.  Hope they switch to a window, stat!  Sending you good vibes and wishes from SoCal!

[RachelSusan]

@j1290Hi, always good to hear from you.

 

You mentioned on your page taking Blood Pressure medication to help with symptoms.  My baseline BP is usually 120/80, or below. The last few weeks it has shot up and then comes down and just bounces up and down during the course of a day. When it goes up my symptoms are at their worst. I don't know if the symptoms and pain cause the high BP or if the high BP is causing symptoms and is nothing to do with withdrawal.

 

Have you had problems with high BP as a result of your tapering?  I wonder how many others here on the site have suddenly had to deal with high BP even though never having a problem before. 

 

[Soup]

@RachelSusan I unfortunately am the same not worse not better just the same symptoms everyday . It’s awful . I think it must be from the Wellbutrin ? But I am not sure 

I so want to taper but was hoping to start at least from a stronger place I no longer believe that I will be able to . I admit I am frightened and a bit hopeless right now 

[RachelSusan]

@SoupI can relate. I understand wanting to start from a stronger place.  My Zoloft taper was very hard at the beginning but later on it did get easier. I was also symptomatic when I started the Zoloft taper. One always wishes for stability at the start of a taper.

 

I am now dealing with something completely different. Possibility a combination of prednisone and Gabapentin? I don't really know. I didn't see this one coming.

[Gertie]

Hi Rachel Susan.  Gosh, I'm so sorry to hear about your current wave.  Your story has been so helpful to me in helping my daughter with her withdrawals and tapers, and I periodically check in to see how you continue to do as a barometer for what we might expect.  I have enjoyed continuing to hear about your success.  This must feel so disappointing.

 

I wanted to share some possibly helpful information.  When I was new to the website, it was pretty overwhelming, and so I printed a lot of the information.  When I looked at the timing of your wave, it reminded me of something that BrassMonkey wrote about, the 10-month wave.  I found it under an introduction section called "Are We There Yet?"  I notice that now on the site the information has been modified and no longer mentions the 10-month wave.  But I'm going to type here what I have printed from BrassMonkey from 2019:

 

"It doesn't end at "0":

The completion of a taper is in some ways just the beginning, now the real healing can start without the interference of the drugs.  The last traces of the drug will be cleared from your system in a matter of weeks.  This leaves the body in a position that it can make the necessary changes without having to fight against the drug's influence.  One of the big disappointments of reaching "0" is finding out that all those symptoms don't just magically stop.  If the taper has been done correctly the symptoms should be at a minimum but there is still a good chance that a person will experience the wave and window patterns for a while longer.  

The big question is how much longer? That we can't tell because as I've said before, "every person's experience is different."  It's also hard to know because members of these forums tend to reach "0", make the jump and disappear.  There is very little in the way of journal entries to guide us.  What we have seen is that most people will still be symptomatic for the first year or so after jumping off.  These symptoms will follow the typical windows and waves pattern with the bonus that the windows will be better and last longer and in general the waves will decrease in severity and length.

There is one big exception to this pattern.  The is referred to as the "ten-month wave" because it typically hits during month ten.  In reality it can hit any time between seven and twelve months, but ten months is the most common.  A contributing factor to this wave pattern is that this is about the time people are feeling comfortable with their recovery.  This can cause them to get careless in their actions.  Drinking alcohol is a major factor in excellent recoveries getting derailed, and this is when it typically happens.  The ten-month wave will typically hit hard and very fast, flaring up unexpectedly overnight. It is common for this wave to be severe for two to five weeks before it ends.  Sometimes it ends as quickly as it started, while in other cases it tapers off over several days.  

There is frequently a similar but less severe wave that hits again at twelve months, and in some cases another in the eighteen-month range.  The later two tend to be less severe in each case.  

These waves, particularly the ten-month wave, are important milestones if they occur.  In most cases they are a marker of great improvements and are followed by a large rise in the Recovery Normal baseline that a person experiences.  (Recovery Normal being the post "0" equivalent of WDNormal which is the baseline during the tapering phase).  The Recovery Normal baseline will continue to improve over the next several years until some semblance of full normality is achieved."

 

 

RS, it looks like this wave hit you in month 11 after finishing your Zoloft taper.  So I'm wondering if the timing of changing up your meds (steroid and antibiotic) coincided with the 10-month wave timing and threw you right into it?  And then you just rolled right into the 12-month wave?

 

If so, it appears that good news might be right around the corner.

[RachelSusan]

@Gertie Thank you for your very thoughtful and informative post. I never even factored a 12 month wave into this situation. You might be onto something. What I am currently experiencing is far worse than anything I went through with tapering Zoloft, however if I factor it into a Gabapentin cut and a change in prednisone it might explain it.  I know that I am (probably like a lot of people here) always trying to figure out what is going on with me and my body. While I may never know for fact it always helps to consider what might be happening. I have been in withdrawal for four months with the last month getting far worse.  I do hope that I will experience improvement soon.

 

How is your daughter doing now?

 

Gertie, thank you for taking the time to think about me, my situation, and retrieving the information from BrassMoney. It is really kind of you and I appreciate it.

 

I posted a lot when I was going through the Zoloft withdrawal, this time around not so much. I have a better understanding now of what is going on and just try and roll with it. When there is a change in my situation I will of course post here. I do like the idea of leaving information behind that others can use for when they are in distress. I have been looking at @ShiningLight a lot lately because Shining went through a Gabapentin withdrawal. I've also been reading the thread "Bad reaction to steroid?" here on this website which has been informative and gave me things to think about. This site is an amazing repository of information.  I hope that my posts will help other people as well.

 

[Believer]

Hi @RachelSusan,

I have been following your story for some time, fellow Zoloft taperer here. I’m sorry to read that you have been having a rough time of late. And I truly understand the desire to understand what happened when things go south. I know that happened to me with Covid vaccines. It took me over a year of researching and hearing of others harmed by the vaccine to put it together. Haven’t been the same since.
 

You’ve had a couple of recent changes during your gabapentin taper - steroids and a flu vaccine.

 

I had a bad/different reaction to my last flu shot three years ago when I was around 4mg; (a few years into my taper, when things were getting a little more dicey at the lower doses).  I haven’t had one since, but working in healthcare I got them every year for many years. Maybe having a sensitive CNS might impact how we respond to vaccines? And as Gertie pointed out, the weird ten month wave. 

I really hope things settle soon for you. Thanks for sharing your story, hang in there.

 

Believer

 

[RachelSusan]

@Believer It's nice of you to stop by and offer your encouragement. It means a lot to me. I appreciate your thoughts on the pneumonia vaccination. I think both you and @Gertie are on to something. It's sounding to me more and more like these severe symptoms might possibly be an unusual combination of events that produced this extremely bad result.

 

I'm truly amazed by how this community has rallied around me. I have often wondered if the words of encouragement I give others really help all that much. Now that I'm at the receiving end of this type of support I realize how powerful it is. It means the world to me. Thank you.

[Carmie]

Hi @RachelSusan

 

Just wanted to let you know I’m thinking of you and I’m sending hugs your way🤗

[RachelSusan]

@Carmie Hi and thank you for stopping by. I will gladly accept the hugs you are sending my way.  I hope you are doing alright.

 

Warm wishes.

[Soup]

@RachelSusan just wanted to stop by and say hi and hoping things have settled a little more for you . Hugs 

[RachelSusan]

@Soup Hi.  It's great to hear from you.  Things are starting to settle.  I still have symptoms but most days they are bearable.  The tremors are worse at night though. The get more intense after I have slept a few hours. Around 3 a.m. they start and they wake me up off and the rest of the night. 

 

I don't know if you are feeling any better yet.  I will go to your page now and see what's been happening with you.

 

 

[littlebird]

On 3/18/2023 at 11:18 AM, RachelSusan said:

Things are starting to settle.  I still have symptoms but most days they are bearable.

 

Glad you're starting to get some relief! Hope you're able to sleep more, being awakened by tremors sounds really tough.

 

 

[RachelSusan]

Update:

 

I am on day 129 after a crash.  The symptoms have gradually decreased but with definite windows and waves after about the first 60 days. The first 60 days the symptoms were with me all the time. The symptoms have also morphed. Some of my original symptoms remain but new ones come and go. I am still symptomatic but functional. During this healing process I feel asleep once without taking my nighttime dose of Gabapentin, so I went 15 hours without a dose. I dosed early the next morning. The intense symptoms came back with a vengeance somewhere around the 15 hour mark but luckily started to decrease by the end of the day and went back to withdrawal normal by the next day or the day after. I can't really recall the exact time frame.

 

My medical doctor is pushing me to decrease my prednisone. I have done so very slowly and with a lot of fear since I still don't know where my original problem came from and could possibly be a combination of changes with both the prednisone and the gabapentin.

 

Gabapentin for me is far worse than anything I went through with the Zoloft, but I have also been on it a lot longer. Same with the prednisone. I've been on it a long time. I approach all medications with a lot of caution now.

 

I also worry that even though today I have low symptoms I could get hit with a wave at any moment. I just try and move on and roll with any symptoms that come my way. I don't make long term plans right now because I never know where I will be at day to day let alone week to week. But still I remain grateful that I am showing any type of recovery. I know there are people that have had symptoms and problems a lot longer than my 129 days. By the way, I track the days both for myself and for others that are curious as to how long things take. I always say don't think in terms of days but think in terms of months when it comes to recovery.

 

 

Edited March 20, 2023 by RachelSusan

[Soup]

@RachelSusan great to hear your update . Glad things are slightly better . I hope you can get better stabilized and then start your slow taper . 
I am still sitting here hoping things would get a bit better but sadly nothing has at all . It’s been 14 months exactly today and to say I am heartbroken about it is an understatement . I really thought if I just held tight didn’t introduce anything at all things would get better . 
I think I am in tolerance of this drug now 

[RachelSusan]

@Soup It's always good to hear from you but it's not good to hear that you are still in a bad situation. Do you have a mod you are working with?  Do they have any idea if it's withdrawal or possibly a side effect, or tolerance? At one point you considered going from xl to sr. Are you still considering it? You have been suffering so much, I wish there was something I could suggest.

[Soup]

No mods help me anymore . Not their fault but I am not tapering so really what would they be able to say . I believe the drug itself turned on me as my symptoms are very much the same everyday . Never get worse never get bettter . I have the immediate release compounded capsules now to take 3 times a day but terrified for the Akathasia to come back if I make a change . Everybody says the immediate release can be stimulating which Means Akathasia . Of course if I don’t make a change I will probably be like this the rest of my life . Bad place to be stuck . I know getting off is the only answer but taking that first step off the cliff is scary .Thanks for responding always so nice to hear from you . 
 

[RachelSusan]

2 minutes ago, Soup said:

Bad place to be stuck . I know getting off is the only answer but taking that first step off the cliff is scary .

At one point with the Zoloft I felt like I was stuck too. I was afraid to continue the taper but I knew I couldn't stay on the Zoloft. It was a terrible place to be.

 

When I think about tapering the Gabapentin I get scared as well.  I am not making any changes yet but even thinking about it frightens me. What a terrible place to be for both of us.

 

I'm glad you got the IR compounded, you will know when you are ready.

[littlebird]

10 hours ago, RachelSusan said:

Gabapentin for me is far worse than anything I went through with the Zoloft

 

I'm shocked at how affecting a Gabapentin taper is! Just with a 2.5% drop, I'm feeling it. The day I tried a 10% drop I about lost it with chronic pain and irrational fears.

 

No wonder I temporarily lost my dang mind with anxiety when my GP halved my dose last year. I needed to cut it, Gabs was hurting my stomach something awful, but I wish I'd been advised to do a slower taper. 

 

2 hours ago, Soup said:

I know getting off is the only answer but taking that first step off the cliff is scary

 

Isn't it? I'm feeling a lot of fear about the next cut, and keep putting it off. 

 

2 hours ago, RachelSusan said:

I was afraid to continue the taper but I knew I couldn't stay on the Zoloft. It was a terrible place to be.

 

When I think about tapering the Gabapentin I get scared as well.  I am not making any changes yet but even thinking about it frightens me.

 

Between a rock and a hard place, it's no fun at all. I find myself thinking, "Damned if I do, damned if I don't" with each step of this process. Let's build ourselves up a lot, we're doing really hard stuff and we're super brave.