RxforCowbell: Untangling this ball of yarn that is a giant mess ...

[RxforCowbell]

I have a pretty complicated medical history and a somewhat rare genetic disorder that was only diagnosed in 2019 when my health rapidly deteriorated.  I have Ehlers-Danlos syndrome, which is a connective tissue disorder.  I also have autonomic dysfunction (dysautonomia) and POTs (postural orthostatic syndrome) and suspected mast cell activation syndrome (MCAS).  My health went rapidly downhill when I developed cranio-cervical instability (CCI) in 2019, causing a ton of neurological symptoms - basically my neck was compressing my brain stem.  At this point, I was started on Klonipin (clonazepam) and it greatly reduced my neurological symptoms - 0.5mg in the am and 1mg at bedtime.  I went from being bedridden in a dark and quiet room to having a very small semblance of life in a wheelchair (this is from a "healthy," active lifestyle in approximately one year).

 

I have been on Zoloft since 2000 for mild depression - initially 25mg that was raised at some point to 50mg (unsure of year).  Previous attempts to taper caused me to be symptomatic, so the doctors said to stay on it.  We did try one switch to Effexor in 2007 or 2008?, and I had a successful taper off of that for a pregnancy.  Post-partum depression had me back on Zoloft in 2009. 

 

I underwent treatment for my neck instability (CCI) in 2020 and 2021 with significant improvements.  In 2020 I was able to successfully reduce my Klonipin dose to .25mg in the am and .5mg in the pm (half my previous dose).  

 

In 2021, my health continued to improve and I decided (without any doctor discussion) to try and taper off my Zoloft.  I was able to do so with a slow taper and was off Zoloft by June 2021 with no side effects.  My overall health had also improved to the point that the benzodiazpines were too sedating.  So with my doctors' (I have a lot of doctors) guidance and blessing, I started anther slow taper for the benzos.  However, I had a health flare up in the fall of 2021 and they decided it was in my best interests to go back up to my previous benzo dose (I am a horrible note-taker, I don't remember how far down I had tapered by that point).  After that flare was over 3 months later, I started another taper.  Stupidly, I knew I had tapered before successfully so did this taper too fast and had some symptoms (emotional lability, morning nausea).

 

Because of the symptoms - at this point, I thought going off of the Zoloft was maybe a bad idea.  I still do, and please no judgemet (I appreciate this is a place that advocates for no judgement) - with my medical history, my chronic pain profile, and my current symptom set (which I'm getting to), I believe a small dose of Zoloft will be beneficial to my overall medical treatment and chronic condition.

 

However, in December, after I tapered the benzo too fast (I was down to 0.125mg once a day in about a month), I read enough about benzo tapers to realize I messed up, but also that I didn't want to go back up (but hadn't found this site, just a lot of really scary info and angry people out there!) So I decided to try going back on Zoloft.  Not knowing any better, I took my previous full 50mg dose. I believe I had a serotonin syndrome response, but I am unsure about that (more below).  In about 6 hours after that first dose, I was vomiting and so thought I had a stomach bug.  I took 4mg Zofran (a serotonin booster) and 3mg Melatonin (also a serotonin booster) that night. In 36 hours, I had two 50mg doses of Zoloft, three doses of Zofran and the Melatonin.  The nausea and vomiting didn't stop and I eventually realized I had something else going on when I had multiple other symptoms - athkasia, severe agitation, inexplicable bouts of crying, unable to keep any food down and no appetite.  I was in the ER twice due to dehydration exacerbating my POTs - my heart rate and blood pressure were uncontrolled despite my medications for those.  The ER doctors started me on Ativan and in a couple of days my PCP switched me off Ativan and back to my Klonipin but at a higher dosage - 1mg in am and pm (2mg total).  All of my symptoms improved in 2 weeks and I was back to "myself." 

 

On follow-up with my PCP, I was again too sedated on that dose of Klonipin so we started a super slow taper.  The first dose decrease (less than 10%!) had no effects.  About 10 days into the second dose decrease (also less than 10%!), I restarted similar symptoms to what I thought was the serotonin syndrome episode, but on a lesser scale - I currently have those symptoms and am miserable and scared.  I am awakening to a huge "surge" of something (anywhwere from 4:30am to 6am) that feels like adrenaline and immediately have to use the restroom (#2).  I usually then also vomit.  I have occasional smaller surges throughout the day, which are usually followed by bouts of crying, panic, or agitation. I woke up at 3am the other morning with a huge panic attack - and I've never had panic attacks prior to any of this.  My appetite is poor until about dinner time.  My heart rate issues (POTs) are not well-controlled (my heart rate is pretty high off and on). I was reading about waves and windows and that sounds totally like me atm - and usually by the end of the day I feel my best.  It has now been three weeks since my last dose decrease, and I am miserable - trying to be a mom to my three kids, good wife to my hubby and help run the family business and I'm barely functioning.  I am hesitant to try a reinstatement due to the amount of ups and downs (kindling) I've had already since last fall.  Also, I am unclear as to if this has anything at all to do with Zoloft since I had a successful taper (like was it really serotonin syndrome or some awful benzo withdrawal?) or a combination of all of the above?  I just found it interesting that I had that horrific experience for two weeks that resolved, and then again 2 months later on a lesser scale - and these current symptoms most recently started with zero SSRI involvement.

 

My end goal: I would like to restart my Zoloft, possibly to my "back in the day" lower dose of 25mg and taper off the benzos.  What I'm not sure of is if I ruined my chances of any SSRIs with what may or may not have been a serotonin syndrome response.  If that WAS a serotonin syndrome response, I am scared to death to try any SSRI again, but in hindsight I am appreciative of what Zoloft did for my overall complicated health condition and would like to be on it again.  I know that is not always the mindset here, but that is where I am today because of the complexity of my chronic condition.  In any case, I need some stability soon and any guidance is appreciated.  Since I occasionally use Tramadol for my pain control, I understand maybe a different med might be in order but obviously I feel comfortable with the "known" medication and have previously used Tramadol while I was on Zoloft with no ill effects.  I'm just not sure if that incident made me extra sensitized now.  Or I'm overthinking it and it was pure coincidence and all from the benzo taper and not anything to do with the Zoloft. 🤒

 

What complicates this as well are all of my health conditions - my symptom set can easily be my health conditions flaring up.  I just finished a pretty extensive endocrine panel and that was all negative, although they have some follow-up endocrine tests to do still.  It could be brainstem compression again, since all of these symptoms can also be categorized as dysautonomia - however those symptoms usually get worse by the end of the day, not better.  I have multiple doctor's appointments lined up to rule out health issues, which is always slow and excruciating amounts of waiting, but necessary to be "sure."  So I suppose my main reason for coming here is with help to tease apart the SSRI and the benzo tapers and what might be safe moving forward.

 

TIA - sorry for the novel!  Also, fwiw, I have a great support system, great kids, and am focusing on the positives as much as I can.  But it has been a hellish three years for me, and these last two months have been the worst. I would take the physical disability over this mental feeling of "losing it" - you all are true warriors in my book!!  I appreciate any help you can give to help me at least get back to "functional" and not "white-knuckling" it every day.

Edited February 17, 2022 by RxforCowbell
Mistyped "Zofran" when I meant "Zoloft"

[Frogie]

@RxforCowbell

 

Welcome to SA. We are a volunteer site that helps member such as with antipsychotic medicattions.

 

This is your introduction page where you will receive information, ask all the questions you need to, and meet members such as yourself. We ask that each member only have one page to keep everything in one place.

 

I see in your signature (thank you by the way for creating this) that you tapered off Zoloft with a relatively fast taper, and you stated you would like to try to reinstate? There is no guarantee that a reinstatement would work, but you could try 1 mg and see how you do. It takes about 4 days for it to be steady in your bloodstream and another few days for the brain to regulate. If the reinstatement would work, you would hold for a good long time and then do a very slow taper. We don't suggest more than a 10% a month taper and many members go slower than that.

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

 Tips for tapering off sertraline (Zoloft)

 

Digestive problems:  Nausea, Diarrhoea, Bloating, GERD

 

 

 

 

How much  Klonipin  on your on now? I guess I'm not seeing this. Could you please add that to your signature. It sounds like to me you are tapering off of it much too quickly also and that's why you are having the symptoms you are having. Again, we don't suggest more that a 10% a month taper and some are gong a lot slower tapering off of a benzo because of the side effects you experience. After I know what dosage you are on, we can come up with a more precise plan.

 

Why taper by 10% of my dosage?

 

Keep it Simple, Slow and Stable

 

I hope I've given you enough to get started. Please read the links and reach out with any questions you may have.

 

[RxforCowbell]

Thank you so much for your response and allowing me into this great group!

 

I will hopefully clarify your questions.  The Zoloft taper was not too fast and was uneventful.  I have been off it since June 2021.

 

My fall of 2021 taper of Klonipin was WAY too fast, and was very symptomatic (emotional issues, etc.).  Not knowing what to do I panicked and took a Zoloft.  I thought at the time I got serotonin syndrome from taking the Zoloft, but it could have been the benzo taper. I was very sick - throwing up/runs, elevated HR and BP, horrible dark feelings, panic attacks, crying spells, etc.

 

I thought it was serotonin syndrome.  They put my benzo dose back up to 2mg/day and I was fine for six weeks.  I did not take any more Zoloft.

 

We started a slow taper - 0.125mg in a month.  I did fine with that first decrease, but after the second decrease on Jan 25th, I started getting the above symptoms but on a smaller scale on Feb 2nd.  I'm vomiting each morning, not hungry, but the worst part are the psych symptoms.  I can barely function between the panic, the agitation, or the crying.  I'm contemplating a reinstatement of the Klonipin.

 

As far as the Zoloft, I think it was actually helpful with my complex med history.  I'd like to actually restart it, but I'm nervous as to if what happened previously was serotonin syndrome or tapering off the benzo too fast.

[Frogie]

@RxforCowbell

 

I can completely understand why you would be nervous to reinstate. That is why I think if you started with 1 mg of Zoloft and see if that work. You would do a nice long hold and then slowly taper, no more than 10% a month, probably slower.

 

You could try a small reinstatement of the Clonazepam, maybe the .125 mg again and like the Zoloft, a nice long hold and then slowly taper, and it would be a lot less than 10% a month. 

 

Let me know your thoughts on this and I'd be happy to help. If you have any questions, please let me know.

 

 

[RxforCowbell]

@Frogie Thank you for your super fast replies!

 

I see my doctor this week and I know he isn't sure if my symptoms are the taper or something with my med history flaring up. He wanted to go back up to the full 2mg, hoping that might indicate if it's the taper or something else medical.  I at least appreciate that he is listening.  I like your idea of a smaller increase instead.  And then stabilize for a while (hopefully) and come back here for a game plan to get off.

 

I'm still scared to try the Zoloft but I'm kicking myself for going off it - I know I'm in the minority here but it was helping my medical issues more than I realized.  I like the idea of a super small dose to start.  I might try one med reinstatement at a time, though, so I know if something happens which one worked/didn't work.  I will try the Klonipin first.

 

I don't know how all of you do/have done this.  I feel like I'm living in my own personal hell.  You all are doing amazing work here.

[Frogie]

@RxforCowbell

 

I would try one reinstatement at a time and hold for a good 7-10 days to see if it is going to work. I would start out at 1 mg and see how that goes. You can always go up in dosage if you feel the need, but it's much harder to go down as you know.

 

If you feel the Zoloft is working then I wouldn't add the Clonazepam unless really necessary.

 

Let me know how it goes and what you decide to do.

[RxforCowbell]

@Frogie - just curious - have you guys seen symptoms six months after tapering a drug? I've heard of protracted withdrawal symptoms but don't know much about it, so am just asking. That's why I was thinking of reinstating the clonazepam first - I was off Zoloft in June and had no symptoms until December - yet I started the benzo taper in October.  So I'm wondering if the Clonazepam is causing these symptoms and not necessarily the Zoloft? Or is it too hard to know? Sorry to be so back-and-forth...just feeling horrible and trying to figure out what is causing it. I guess just getting stabilized is my priority vs. which drug is helping more...thank you so much for your help.

[RxforCowbell]

@Frogie

 

So I decided to start with the reinstatement of clonazepam because when we messed with that medication is when I started having symptoms.  On days 2-3 after reinstatement, I could feel a very slight improvement, days 5-7 were awful again and then the last few days I can see improvements again.  I still have adrenaline surges when I wake and nausea in the morning, but not throughout the day. I still have severe fatigue and am still unable to work.  I was curious as to what the goal is for reinstatement - do we try to get to a more functional level in general? Because I'm still doing pretty poorly and have lost 10lbs in a month. You mentioned doing a second dose up and I'm curious what your thoughts are on that - yes, even knowing it makes it harder later...I'd like to at least be able to function while doing a long hold before starting a more structured taper.

 

Of course, my doctors are still trying to figure out if my symptoms are a result of the taper OR my neurological issues that the benzos have been treating (and thus tapering down flares the neuro symptoms).  I know you all are volunteers and I SOOO appreciate the work you do!!  And that this medical component is out of most people's scope but I want to be transparent. I have a lot of moving parts in this special medical complex body of mine, lol, and I know my case is different in some ways.  There is also talk of another procedure to help with my neurological issues which complicates things a bit, but also makes me want to achieve a slightly more functional level of living to get through that procedure.

 

Also, I'm holding off on the Zoloft for now.  I tapered it well and was not symptomatic - I am going to talk to my cardiologist to see if there are alternatives that might help with my heart/neurology/pain condition. 

 

Thank you for your help!!

[RxforCowbell]

Bump - can we bump on this forum? Does it work? 🥰

[ChessieCat]

@Frogie Are able to assist here please?  Thanks.

[Frogie]

@RxforCowbell

 

How much clonazepam did you reinstate with? And are you taking it just once a day? 

 

I'm going to give you some links to read and hopefully it will help you understand more about reinstating.

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Withdrawal Normal Description

 

It could be that you need to take it twice a day so your body can keep the same amount in your bloodstream. Clonazepam stays in your system 18-50 hours.

 

Could you please add this to your signature. The date, name and mg that you reinstate with. Thanks.

 

Please let me know if you have any other questions.

 

 

[RxforCowbell]

@Frogie

 

Thanks for the links, I just read the reinstatement link - my question is in my second paragraph.  Yes I am taking it twice a day - now I am now taking 0.6125mg of clonazepam in the morning and 1mg in the evening.  I will add it to my signature.  I was on 0.5 in the morning and reinstated with 0.125mg in the morning on Feb 21st.  As I said above, on days 2-3 after reinstatement, I could feel a very slight improvement, days 5-7 were awful again, and then I saw some further slight improvements.  I'm still very symptomatic, however.  

 

I guess my main question is at what point do you decide to increase and do another small reinstatement? Since it has been over two weeks now, and I'm still feeling awful but did see improvement with the first increase, do I do another or wait a bit longer?  I've definitely plateued on improvements from the reinstatement. I don't want to wait too much longer to miss the window, but also don't want to trigger kindling. I am still barely functioning.  I see Aostrata's comment that reinstating does not mean getting to a perfect state of mind, but I guess I need help deciding if I should try one more microdose up or not. Thank you (off to update my signature)!

[Frogie]

@RxforCowbell

 

I would go ahead and updose your morning dose 0.175 mg and see how you do. That’s a really small increase but it just might work for you.

 

It will take a good 7-10 days to really know for sure.

 

Let me know what you think.

 

Take care