Frank85: need help/advice

[Frank85]

First off, my story/background:

 

I was started on 20mg Paxil in 2001 at 16 years old for IBS by GP.  Attempted to taper off in ~2010 over many months due to my personal concerns on SSRI use long-term but failed due to terrible withdrawal (no sleep at all, brain zaps, crying fits, etc.) when reaching a low dose and was put back on Paxil at 30mg by GP which I stayed on until January 2021.

 

Around mid 2019 and through 2020 I started having some depression type feelings and maybe very minor anxiety, but it was fairly benign and not particularly often so I blew it off.  I had an Ischemic Colitis attack in December 2020 and was hospitalized for ~1 week.  At this point Anxiety and significant depression started to occur, and in January 2021 Paxil was cross-tapered to Effexor by GP, reaching a final dose of 150mg Effexor/0mg Paxil after 3 weeks.

 

Effexor did not seem to help me, anxiety actually seemed worsened and I had bad nausea among other side effects so on March 27th, 2021 was direct switched (no taper) to Lexapro 10mg by GP.  Lexapro dosage was then upped to 20mg by GP on April 24th 2021 as 10mg didn't seem to be helping much either (some improvement maybe, but barely noticeable if so).

 

On April 27th 2021 I started seeing a Mental Health NP, who added 150mg Wellbutrin XL daily, as well as Gabapentin 200mg at night.  After a week or two I started feeling improved, not myself for sure, but at least noticeably better.  My Mental Health NP now has me weaning off the Lexapro 5mg down every 5 days starting on May 18th (15mg for 5days, 10mg for 5days, 5mg for 5days, then 0mg)  I am currently down to 10mg Lexapro, so my current medications are as follows: 10mg Lexapro, 150mg Wellbutrin XL, 200mg Gabapentin (at night).

 

I'm super concerned about the fast taper of the Lexapro, even though I wasn't on it for very long I have been on some form of SSRI (obviously the Paxil predominantly) for 20+ years now nonstop.  I've brought this up to my mental health specialist multiple times, and he swears/assures me that Lexapro has a long enough half-life that no taper is necessarily needed, and the 5mg drops every 5 days is conservative and will be fine.  I've been hesitantly following through on his plan, but I already feel like my anxiety is worsening.  The hardest part is the anxiety doesn't seem to be about anything in particular, just random feelings that I can't pinpoint any cause on.

 

On top of all this, I was started on a CPAP machine about 1 week ago after being diagnosed with mild obstructive sleep apnea.  At the time I thought great, maybe this is contributing to my depression/anxiety symptoms but so far my sleep has been just as lousy (multiple awakenings overnight, difficulty getting to sleep) as it was before.  I was also found through blood testing this month to have quite low testosterone for my age, but my GP is hesitant to treat it due to concerns over causing cardiac issues or worsening the sleep apnea.

 

Aside from the mental health (which is obviously terrible at this point) I'm for the most part in good physical health.  The colitis is mostly resolved, I'm a healthy weight and in generally good shape (5ft 7.5in, ~165lbs).

 

I'm not sure what I'm looking for out of all this, I guess mostly advice and reassurance - I'm concerned that being on the Paxil so long and from a young age has done serious damage that maybe I'll never recover from.  I'm scared I'll never feel like myself again, that I won't be there for my wife and kids.  I'm scared I'll be medicated for the rest of my life, my mental health specialist doesn't seem concerned when I bring these things up, he thinks everything will be fine.  Anything anyone can offer is greatly appreciated, and I'll happily answer any questions and offer more information.  Thank you all.

 

 

 

 

Edited May 26, 2021 by Gridley

[Gridley]

Welcome to SA, Frank85.  Thank you for completing your drug signature.  We are a site for tapering off drugs and helping members deal with psychiatric drug withdrawal.  

 

Regarding the Paxil at an early age, it has been our experience on this site that we all heal from these drugs.  We have a number of members who were drugged at an early age and who have recovered and healed.  So that's one worry you needn't trouble yourself with.  To get to matters closer at hand:

 

3 hours ago, Frank85 said:

My Mental Health NP now has me weaning off the Lexapro 5mg down every 5 days starting on May 18th (15mg for 5days, 10mg for 5days, 5mg for 5days, then 0mg)

 

The tapering schedule your NP calls for is much faster than we recommend and puts you at risk of withdrawal symptoms the duration and severity of which are impossible to predict.  Lexapro is the most powerful  SSRI on the market (2 to 4 times more potent than other SSRI's). 

 

We recommend tapering no more than 10% of your current dose every four weeks.  This link explains why:

 

Why taper by 10% of my dosage?

 

The last 10mg should be tapered especially slowly and carefully.  There is a very high rate of receptor occupancy (parts of the brain affected by the drug) at low doses, meaning that even on low doses of the drug, it is still having a major effect on the brain.  Please see this link: 

 

SERT Transporter Occupancy Studies

 

A person is subject to withdrawal symptoms from an antidepressant after one month on the drug.  The vast majority of medical personnel, including psychiatrists, GP's and NP's, know nothing about safe tapering and invariably taper their patients too fast.  They also don't believe in the existence of withdrawal.  The experience of our members has been the opposite, and that is why this site exists.  Your NPs statement that no taper is needed, and the 5mg drops every 5 days is conservative and will be fine is unfortunately typical.  You mention worsening anxiety.  Anxiety is one of the most common signs of withdrawal due to a too-fast taper.  

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

I would recommend you do not taper Lexapro any further and hold where you are at 10mg Lexapro for at least three months (perhaps more) to allow your brain to catch up and become accustomed to the rapid reduction from 20mg to 10mg.  If after this time you feel stable, you can begin a slow, safe 10% taper to zero. This link is specifically about tapering Lexapro, including how to get the non-standard doses needed for a 10% taper.  

 

Tips for tapering off escitalopram (Lexapro)

 

3 hours ago, Frank85 said:

I'm scared I'll be medicated for the rest of my life, my mental health specialist doesn't seem concerned when I bring these things up, he thinks everything will be fine. 

 

Yes, they believe that drugs are the answer.  Drugs are their stock-in-trade.  My psychiatrist told me I would be on Lexapro for the rest of my life.  As you can see from my drug signature, I finished a slow taper to zero off 20mg Lexapro 7 months ago and am doing well.  In the book, Anatomy of an Epidemic by Robert Whitaker, which comes highly recommended on this site, the author found that long term and across the board in all classes of drugs, including antidepressants, people did much better off these drugs than on.

 

Anatomy of an Epidemic

 

Here's a video book trailer by the author, Robert Whitaker:

 

Robert Whitaker, author Anatomy of an Epidemic video (11 minutes)

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited May 26, 2021 by Gridley

[Frank85]

Thank you for the reply, and for all the information Gridley.  I will definitely push back harder on getting the Lexapro prescription extended, if not by the mental health NP then I believe my GP will do it if I bring it up to him.  Would you happen to have any thoughts on the Wellbutrin and Gabapentin?  I guess at this point I don't mind staying on the Wellbutrin until everything else is settled and then worrying about tapering that when it's the only thing I'm on, but the Gabapentin in particular concerns me.  Having been on it for less than a month now (really ~2weeks as it took a few days for the pharmacy to get it in and then pick it up), and at a low dose, would it be advisable to get off of it before dependency sets in?

 

My thought would be continue the Wellbutrin XL at the 150mg, hold at 10mg on Lexapro as you stated and then start the 10% taper in a few months, and stop the Gabapentin now and see how things go.  Does that make sense?

 

Thanks again for taking the time to respond, I really appreciate it!

[Gridley]

10 minutes ago, Frank85 said:

My thought would be continue the Wellbutrin XL at the 150mg, hold at 10mg on Lexapro as you stated and then start the 10% taper in a few months, and stop the Gabapentin now and see how things go.  Does that make sense?

 

If you've only been on the Gabapentin for two weeks, it is very likely that you could simply stop the Gabapentin now.  Your statement quoted above seems to me to be a good plan.

[Heath]

@Frank85 welcome to SA! Glad you found us ! You are in the right place to get off these medications. There is tons of valuable information here. Learn all you can about these drugs and your system. As gridley said hold with dose for several months before tapering. This hold can give you mental stability. Our nervous system cannot handle a lot of changes with this meds in a short period of time. This is only temporary. Slow and steady equals stable. The moderators will guide you and we will support you along the way!  Hang in there! 

[Frank85]

Woke up today feeling pretty awful, around 5am or so awoke with head "pressure" and moments of heart racing type feelings, struggled to fall back asleep at all and am not sure if I even did honestly.  When it came time to get out of bed I couldn't get myself to do it, I finally struggled to drag myself up about an hour late.  I feel exhausted, my concentration/focus is terrible, and I feel generally very foggy almost lightheaded.  I'm finding it very difficult to care, if that makes sense, just very hopeless feeling I guess.  I left a message for my MH-NP as soon as I got up, but haven't heard anything back yet.  

 

Is it possible I'm feeling W/D from the fast Lexapro taper from 20mg to 10mg?  It was less than a month I was at the 20mg when I started the MH-NP's rapid taper advice down to 10mg, so I don't know how likely it is that this would be W/D related vs. something else.  Honestly I'm now questioning if the Wellbutrin is even having any effect at all - it was only 3 days after my Lexapro was upped to 20mg that the Wellbutrin was started so now I'm thinking any "positive" (if you could call it that) that I was feeling was just from the Lexapro increase, especially since the 10mg probably isn't sufficient to match up with the 30mg of Paxil I was on for 20 years.

 

Obviously at this point I'm not going to drop my Lexapro dosage anymore anytime soon, the Wellbutrin XL I've been taking for exactly 29 days at this point (1 pill left in my initial 30 day fill so I know that for sure) so I don't know if it makes sense to just keep taking in case it's doing something?  I don't know, just feeling kinda lost today...

[Frank85]

Still nothing from MH-NP, so guessing I'm not getting a call back today...I think I need to look into a new MH professional, it's just so hard to find anyone that's not completely booked with all the pandemic related stress people are having, let alone finding one that understands withdrawal.  Ugh, I'm just so discouraged and don't know what to do.

[Heath]

@Frank85 sorry you are feeling bad , I know it’s tough try to make yourself go about normally and avoid stress where you can.

 

The answer to your questions would be best answered by gridley. Or a moderator. When you have a question you can put the @ symbol and then their name like this @Gridley. 

 

I would say what you are feeling is medication and dose changes in a short period of time. Convo of withdrawals and adding new medication. With Ssris like lexapro and Paxil etc. it takes time for your body to see the change in dose or med change. I have changed doses before and felt great for a week then sleep 12 hrs a day or have anxiety for a few days or weeks. It’s kinda like you make one change and then wait a month per say. No when you have to deal with more than on drug that complicates things a little. 
 

i understand the discouragement! I do understand that search for a dr to listen and knows the answer I been there done it! I stopped looking for a dr that understand withdrawals or anyone that hasn’t done it  for that matter, I  checked that off my list don’t even worry about that one anymore! I just go to dr and get my script and move on. He thinks I’m trying to get to a low dose with less side effects 🙄. You will start to notice that when you call or go to dr they will have an answer but it will be more drugs. And more is not better if you want to get off the kool aid.  It took me awhile to catch on but I did . I have much more faith in moderators here than a dr. I can assure you gridley and moderators will guide you through!  Slow and steady! 
take care! 

[Heath]

@Frank85 I just noticed you and we’re on Paxil 20 about the same time. 1 mg of lexapro equals 1.9 mgs of Paxil. You are on 10 mgs of lexapro which is equal to 19 mgs of Paxil. Just to give you an idea of the difference since you were used to Paxil.

[Gridley]

6 hours ago, Frank85 said:

I was feeling was just from the Lexapro increase, especially since the 10mg probably isn't sufficient to match up with the 30mg of Paxil I was on for 20 years.

It's impossible to tell what's causing your symptoms, given all the drug and dose changes.

 

The important thing here isn't to determine causes, since, as you say, you're not going to drop Lexapro now (and I wouldn't up it either).  My recommendation remains the same as the plan you arrived at earlier: hold at 10mg Lexapro for several months, continue with the Wellbutrin, and stop the Gabapentin.

 

Regarding the Wellbutrin, at 29 days you're right at the borderline in terms of whether or not you're at risk of withdrawal if you stop it.      There's no way to know.  However, we recommend making only one change at a time; otherwise, you won't know what's causing what.  It may not being doing you any good, but that's not the main consideration here.  The main consideration is stability and avoiding or minimizing withdrawal.  You've made a lot of changes and I would make as few as possible at this point.  

 

It makes sense to stop the Gabapentin since you've only been on it for 2 weeks.  That's one change.    I would't make any others.  I would get stabilized on the Lexapro for several months, as I recommended earlier, then taper off it.  Then you can tackle the Wellbutrin.  Wellbutrin can generally be tapered more quickly than other antidepressants, but that a determination for the future.

 

 

 

Edited May 27, 2021 by Gridley

[Frank85]

Thank you Heath and Gridley, I appreciate all the information and reassurance.  @Gridley I'm glad you mentioned you wouldn't up the Lexapro either, since that was a thought that crossed my mind if I started feeling worse, but I'll tough it out. 

 

My focus now will be getting the Lexapro script refilled since I'm on my last 20 or so pills with no refills remaining.  I wish the MH-NP had called back so I could have asked, otherwise I'll know to have to schedule an appointment with my GP and hope he'll do it, of course after he said he'd defer to MH going forward at my last appointment.  I think GP would be understanding of withdrawal concerns though and be willing to rewrite the script, hopefully.

[Gridley]

14 hours ago, Frank85 said:

 

My focus now will be getting the Lexapro script refilled   I wish the MH-NP had called back so I could have asked,

I wouldn't expect much from your NP based on his actions in the past.

 

14 hours ago, Frank85 said:

I'll know to have to schedule an appointment with my GP and hope he'll do it, of course after he said he'd defer to MH going forward at my last appointment. 

You're right, the focus now is getting a refillable prescription for the Lexapro.  Given your GP's (unwarranted) deference to your NP, here are a few tips on dealing with your GP.  First, it's important that you remain calm and reasonable during your appointment.

Otherwise, he'll think you have a "mental illness" (as opposed to the reality that your problems are due to withdrawal).  As I wrote earlier, doctors don't believe in the existence of withdrawal, relying on the information the pharmaceutical companies unsurprisingly disseminate about their profitable product.  The U.K. is a bit ahead of the U.S., and Royal College of Psychiatrists, their official national psychiatric association, in 2019 updated their recommendations to admit for the first time the existence of severe antidepressant withdrawal.  You might want to print out the pertinent information from the following link for your appointment with your G.P.  Use your discretion on how much to show your G.P. and, as I said, present the information very calmly and reasonably.

 

Stopping antidepressants

 

And here's an article with leaders in the RCP explaining why they wrote what they did. 

 

Psychiatry’s Top Experts Acknowledge Lasting Harms of Antidepressant Withdrawal

 

You may find this thread helpful, from the Journals section:

 

Papers about prolonged antidepressant withdrawal syndrome

 

The following regarding the 10% taper is more for your information than for sharing with your G.P. (it's an understatement to say that doctors don't tend to like being educated by their patients and they have little regard for information from the Internet, but your G.P. may be an exception).  Again, use your discretion. The 10%-per-month reduction method is recommended by

 

• Peter Breggin in Your Drug May Be Your Problem (1999, 2007)
• The Icarus Project Harm Reduction Guide To Coming Off Psychiatric Drugs
• MIND-UK's Coping With Coming Off Psych Drugs Guide
• Gianna Kali's Withdrawal 101 on BeyondMeds.com
• and many peer support groups -- people who know what withdrawal symptoms are like

14 hours ago, Frank85 said:

I'm glad you mentioned you wouldn't up the Lexapro either

 

Not until you've stopped the Gabapentin (only one change at a time) and assured yourself of a reliable supply of Lexapro.  Once those are accomplished, updosing Lexapro a very small amount is a definite possibility for helping alleviate withdrawal symptoms. For your appointment with your G.P., here are some aspects to consider regarding your prescription for an updose. First, the updose would, to start, be very small, likely 1mg.  So you'd need to have enough of the drug in terms of prescriptions to accomplish this for quite a while (several months).  Second, a prescription liquid is an easy and accurate way to updose.  However, some people don't do well with the liquid and if you switch to a liquid, you'll need to cross over to it, which can take 2 to 4 weeks, and would require prescriptions for both tablets and liquid.  Another possibility is to updose with combination of a 10mg tablet and a small dosage of liquid.   Given your G.P.'s possible reluctance to prescribe Lexapro to you, asking for a liquid may be pushing it.  Again, use your discretion.  If you can't get a prescription for liquid, a small updose can done with powder from a tablet, and we can help you with that.  But first things first: stop the Gabapentin and get your Lexapro supply in whatever form you can.  

 

Also, remember that any M.D. can prescribe Lexapro.

 

 

 

 

 

 

[Frank85]

It's been a bit since my last post, but here's the current update:  

 

I ended up going back to the full 20mg of Lexapro even though I really didn't want to.  I first up-dosed from the 10mg I was at to 12.5mg for a few days, then 15mg, then back to the full 20mg before I felt the W/D effects were clearing enough to function.  I had a DNA test done through Genomind that showed I have a MTHFR gene mutation, which lead to me being started on Deplin 15mg and switching my B12 supplement to a Methyl-B12 version.  Honestly, I felt pretty decent (definitely not "normal" but at least functional) a few days after starting that and continuing with the other meds, but these last few days have been rough.  I've been experiencing terrible "brain fog" where I basically feel like I'm stuck in a 24/7 hangover: Slowed comprehension/thinking, spaced-out lightheaded feeling, slight headache/head pressure mostly in front of head and "inside" my head if that makes sense, trouble handling day-to-day work and home stuff that would normally be easy, forgetfulness, etc.

 

@Gridley@Heath Have either of you every had an experience like this while on Lexapro?  I really don't know if this could be medication related, or something else entirely.  I've tried microcurrent neurofeedback, and even have an appt scheduled now for a hyperbaric chamber because at this point I'll try anything to "clear" my head - it's taken me almost an hour just to write this post ugh.  If there's a chance this could be from the Lexapro (or even the Deplin, although I don't think that would possibly cause anything like this) I'd want to start a taper asap because I can't keep on like this.  I called my primary even asking for a neurologist referral, but he wants to see me in person to consult first and can't get me in until August 5th.

 

Any thoughts/advice at this point would be greatly appreciated, thank you to anyone reading this.

[Frank85]

Sorry to post again so soon, just feel like I need to get this down somewhere.  The brain fog has been so debilitating today, I'm actually scared of going home from work and having to take care of the kids alone, especially when I feel I can barely take care of myself.  I'm just so "spaced out" I feel like I can't even go through the right routine/steps - has anyone been there before and made it through?  I just want to be myself again - smart, quick-witted, confident, enjoying all of life - and I don't know that I ever will.  I'm so angry I was ever put on any of this poison, especially for such a damn benign reason when I never had mental health issues just a bad stomach.  What is even the point of all these meds and supplements if I feel so terrible, how can I even tell what causes what anymore? 

 

I was always so careful with my body growing up, or at least I thought I was.  Exercised regularly, Never smoked, barely ever drank, never even tried pot and certainly not any hard drugs.  Little did I know as a 16 year old the "medicine" my doctor gave me for "gastrointestinal spasming" as he put it was probably worse than any of the stuff my peers were doing.  Now 20 years later and I feel like my brain is shot, everything that made me "me" fried.  How do I push through this?  Do I just keep going and hope to reach some sort of stable?  Do I start to taper because, f it, how could it be any worse?  I don't know, I'm just lost.

[Artistic1]

@Frank85

Sorry you are going through so much! First, some reassurance....all the symptoms you describe are very common. I had them all, and still have some of them occasionally.

 

Mia1 and Hanna72 have posted some great information about being in the "Now," rather than trying to get out of where you are now and into a better place. Yes, we all want that better place, but sometimes there's not much you can do to get there. It has to arrive in its own time. 

 

You say, "I just want to be myself again - smart, quick-witted, confident, enjoying all of life..." That is wishing for the past, which you cannot live anymore, except in your head as an unhelpful thought. You are who you are TODAY. 

 

Then you ask, "Do I just keep going and hope to reach some sort of stable?" That is wishing for the future, which you also cannot live today. You are where you are TODAY.

Once I discovered this insight, my problems started to go away. Not quickly, because it took me years to get into the mess I was in, so I accepted it could take years to change and get out. It's been a journey, but today, I am better than I was in the past, and I don't worry about the future. This is a 180 degree turnaround for me.

 

If you can accept where you are right now...whether it's good or bad....that is the first step. Feeling crappy today? OK - you're feeling crappy. Don't wish it away. Don't wonder why you are that way or struggle to fix it. Changing your mind and thoughts about working WITH it, not against it, will create gradual change in all aspects of your life. When you say, "I'm actually scared of going home from work and having to take care of the kids alone, especially when I feel I can barely take care of myself," you are already setting yourself up with your thoughts to experience anxiety and a bad time with the kids. How do you change that thought and others like them to make your experience of NOW a better one? 

 

There are lots of resources out there that you can take advantage of to help with living "the now" TODAY, and to change your thoughts about life and how to deal with it. If you use some of these, it doesn't mean your life will be wonderful every day, but it does mean that you will be able to handle each day much better....and hopefully better than you ever did before. 

 

Here are some of the resources that helped me:

CBT therapy. I found a great therapist that I really connected with and saw regularly for more than two years. It was a life-changer, because I applied everything I learned in these sessions, and they worked. Not right away, but gradually, and now the practices are just part of my life. We used the book, "Mind Over Mood," by Greenberger and Padesky. Available on Amazon. You can actually use it yourself if you don't have a therapist to help you with it.

 

Eckhart Tolle. His book, "The Power of Now," is great. He also has lots of free videos on YouTube and a website that you can subscribe to for about $20 per month. It took me months of reading, re-reading, viewing and re-viewing the videos, but his philosophy rang true with me, and if you apply what he's saying, it can really help.

 

Dr. Amy Johnson. Her book, "Little Book of Big Change." She also has free videos on YouTube. She does a free weekly podcast. You can subscribe and get them sent to your email once a week. She is my guru!!! Her insights are sooooo helpful. She also has an online school, The Little School of Big Change.

 

Baylissa Frederick. Her book "Recovery and Renewal." This will give you so much reassurance about your symptoms and dealing with withdrawal symptoms should you have them if you decide to taper off the meds.

 

Once last comment. If you feel you're ready to start a taper, you should follow the directions on this site for the 10% taper schedule that Brass Monkey has published. It looks like the taper you attempted with Lexapro was too much, too fast. Once I started a slow taper, (I reduce by 11% every 8 weeks), I've been able to reduce my Zoloft with very few withdrawal symptoms. I feel so much better and my health and sleep patterns have really improved. I did the taper, because like you, how could I be any worse? I was miserable on the medication. I figured if I'm going to feel bad, I'd rather feel bad OFF the medication. That had to be better for my body. I just needed to work on my mind to deal with any fallout, which is where the resources above really helped.

 

I hope some of this will help you. And I wish you the best of luck. Any questions, feel free to ask.

[Frank85]

Sorry I didn't say it sooner, but thank you very much for all the information @Artistic1 it was definitely helpful.  Just to update/keep a record here, I did start the 10% taper method on July 30th, so I am currently at 18mg Lexapro and will assess dropping to 16.2mg after 4 weeks if all seems well enough.  Currently, I'm using a pill splitter and cutting up tablets while using a small .001g scale - not the most accurate thing in the world, but I figure it's good enough for these initial couple drops since they are larger in total mg size that it should be pretty close at least.  A 20mg pill seems to weigh around 260mg give or take with all the filler, so I've been cutting them to ~234mg and hopefully removing a close to equal amount at least of filler/active ingredient.  @Gridley, does this seem reasonable to you for the time being?  I do have an appointment in a couple days scheduled, so I'm hoping to be able to get the liquid Lexapro prescribed so I can be more accurate going forward.

 

At this point my worst system by far is still the "brain fog" but it seems no different (up to this point at least) since starting the taper.  Thanks again to anyone reading and as always appreciate any comments/advice!

 

Edited to add: I also do still plan to ask my primary about a Neurologist referral just to rule out any other cause of the brain fog, especially since it has been so persistent.  I'm hoping it's just medication effects that will pass over time, but figure it's worthwhile to dig a little deeper.

Edited August 4, 2021 by Frank85
Additonal Information

[Gridley]

4 hours ago, Frank85 said:

A 20mg pill seems to weigh around 260mg give or take with all the filler, so I've been cutting them to ~234mg and hopefully removing a close to equal amount at least of filler/active ingredient. 

That seems reasonable to me.  If you're using the SmartWeigh Gemini 20 scale, it's accurate enough for tapering purposes. Just remove a bit and weigh until your dose is 234mg.  

 

If you switch to liquid, we recommend a gradual crossover from tablet to liquid so your system can get used to the liquid.  Don't taper during this crossover period (only one change at a time).  The crossover we recommend is:

 

3/4 dose tablet, 1/4 dose liquid for 3 to 7 days

1/2, 1/2 for 3 to 7 days.

1/4 dose tablet, 3/4 dose liquid for 3 to 7 days

all liquid thereafter.

 

 

[Heath]

@Frank85 sorry for the late reply! Yes what you are experiencing is most likely side effects from updose. Same thing happened to me. 
After starting lexapro develop dry eyes, dry sinuses, dry mouth ears popping. About 4 months after starting lexapro I was on 15 mg. And brain fog, spacey, tired, hangover feeling started in April 2019. One time in July I almost passed out in the heat. I was doing allergy immunization also which made it worse. What you described is what I felt. The last dizzy feeling I felt was in April of this year. I was on 9 mg. It happens every year in the spring. So for me it has happened to me 3 spring/summer seasons so far. And last a few months. It is not constant day in and day out. There is a lot that may never be understood about this. But the fact I know is it’s related to lexapro, allergies- pollen, sinuses and heat. And the lower the dose it is getting better every year. 
and yes thought process can’t think good, very forgetful, can’t get words from brain to mouth sometimes. This is worse in morning after I take lexapro and when I taper. 

the first experience I had was not really dizziness but foggy feeling. then I had a dental implant start bleeding. Went to dr . It was bad infected. So surgery and removed implant in September 2019. Right in the front too 🙄.  Brain fog got a little better.  Hence cooler weather 👍Until next spring it hit me again. So I started compiling my information for csi investigation 😆.  So my front dental implant became infected and was removed because lexapro side effects. Dry mouth and I thought it was causing brain fog. Do the drs know this happened because of lexapro no they haven’t a clue!  And yes I wished I would have just let things calm down and research before I went to dr for that but history not looking back. 
 

I have been on these meds as long as you and also have crashed try to come off as you have. And during this time I have chased medical problems that were caused by ssris either side effects or withdrawals. I have been to drs for severe sinus infection a year after starting Paxil in 2001. And what did the drs and me do? Sinus surgery. Yep! And did it stop sinus infection? Nope! I have learned to accept it is the lexapro and to just close the book per say. 
acknowledge - the facts it is what it is.

accept - that it is what it is. 
float -  let the thoughts and feelings float on by. Kinda like listening to a radio while you work. You hear but you are not listening. 
another thing that happens when we go to drs for these health issues which may or may not be caused by lexapro it ramps up anxiety that compounds withdrawals. 
 

by no means am I saying not go get checked when you need to! I’m just saying be careful, stay calm , do your research before you make a big decision. 
 

the only way to be able to taper with minimal side effects is to get our nervous system stable. And to get from unstable to stable is same dose same time every day for long time ( 3 to 6 months) . I’ve been unstable a few times and it always takes me around 3 months to start feeling better and 6 months to be good and stable. So somehow if you could hold you dose for a good time I think  it would really help your taper plan. 
 

I tried cutting pills for a while and tried the 10% cut a month didn’t work for me. I use liquid lexapro with a syringe and do the brass monkey slide. Which is 2.5 mg cut each week and hold for 2 weeks. And even with me doing brass monkey slide I still feel withdrawals but very minimal. But we are all different so do what suits you. 
 

i need stability for job, family and kids. I know it’s tough! The liquid suits me for stressful life and it is much easier if your dr will prescribe it. I explained to my dr about dry mouth and eyes and I wanted a lower dose and only way to get there was very slow with liquid. and like gridley said do a gradual transfer to liquid if you go that route. 
try and kept calm and slow you thoughts. Make calculated decisions. Keep everything simple where you can. These are only my experiences and thoughts. Sorry so long and sorry I didn’t reply sooner. 
slow steady stable wins this race 👍.  Hang in there! 

 

[Frank85]

Been about a month and a half since my last post, so updating again to keep a record, plus I always welcome any feedback.  I've been continuing to taper the Lexapro, 10% cuts at different intervals depending on how I feel (the exact schedule is in my updated signature.)  Overall, it's basically waves and windows - I never quite feel like my "old self" but I at least get some periods of decent to good that at least I can live with.  The brain fog continues to be the most debilitating symptom, occasionally it's so bad I'd swear I'm developing dementia or something, but I've been working hard on having more positive thinking and shaking these negative thoughts off; telling myself "STOP" in my head when these thoughts creep in.  Insomnia has also been rough lately, seem to get to sleep fine but waking up anywhere from 1am-4am and once that happens it's basically impossible to get back to sleep for whatever reason.  I've tried soothing music, binaural beats, etc. but it seems like once I wake it just is what it is and that's the amount of sleep I'm getting for the night.  Not sure if the insomnia is a side effect of the Wellbutrin (I've seen a lot of people saying they have that issue with Wellbutrin use) or the Lexapro, but at this point I'm just hoping if it is the Wellbutrin that eventually I'll acclimate to it, as I would really much rather continue the Lexapro taper and get that done rather than having to pause that indefinitely to do anything about the Wellbutrin - I guess only time will tell.

 

It gets really tough sometimes, especially when I want to enjoy things but just can't get there at the particular time depending on my state - it's especially true when it comes to my kids and wife, I love them more than anything and even with doing my best to live in the moment sometimes it's just impossible to be able to be playful/have fun with them.  I do my best though, and that's all I can do - fake it until you make it, the last thing I want is my children worrying about their dad's mental state, and hey, sometimes in the good windows I am truly able to enjoy things with them so I'll call that progress.

 

Anyway, I think I've rambled on enough for today.  A big thanks as always to anyone reading this.

[Frank85]

Almost a year since I've posted on here...I honestly think I'm ready to give up, I can't do it anymore.  It was hard enough getting through with all the brain fog, anhedonia, just lack of caring and motivation, fatigue, weakness, etc. hoping there would be a light at the end eventually.

 

Now about a month ago I started having terrible urinary symptoms, constant burnig/pain that increases substantially everytime I finish urinating, constant feeling of having to go and so going to the bathroom every 30min-1hr and barely getting anything out.  I had an in person sleep study scheduled to see more in depth about whether sleep apnea contributes to my terrible fatigue but they canceled saying no point in doing it if I'm getting up constantly to go to the bathroom every night, as this all started days before the appt.

 

Doctors have done urine cultures, PSA level, and haven't found anything in particular.  They put me on two different antibiotics "just in case" originally claiming the thought was epididymitis or prostatitis, neither helped at all.  Followed up with urology and they were no help at all, didn't even do an exam or check anything, just prescribed tamsulosin which also did nothing for my symptoms just made me even more light headed/dizzy, stopped it after a few days.  I ask about further diagnostic tests, GP says nothing else for them to do, has to be taken care of by a urologist.  Urologist doesn't seem to want to do anything diagnostic, follow up in 6 weeks and see if it's improved they said.  It's been about 1 week since that, I won't make it another 5.

 

I don't even know what I'm looking for posting here again...I guess just ranting that I've lost all faith in the medical community, nobody seems to care.  I don't think I want to die...but sure seems like I'd be better off, and I wouldn't be a waste of space to my family anymore.  

 

I'm 100% certain I already wouldn't be here anymore if not for my wife and kids, but what am I even doing for them at this point?  I just create more stress for my wife, I'm basically useless at helping accomplish things.  My daughter I can tell just gets upset to see her dad in the state I am, I don't want to do this to them anymore.

 

I don't know if anyone will even read this, but at least I got it down in writing...I had to stop a minute and sob trying to type the sentence about my family, but I don't see how they aren't better off in the long run without me.

 

I really wanted to be a success story, I'm sorry I failed.

 

[Altostrata]

I'm sorry to hear you're having these problems. Are you still taking Lexapro?

 

Did you have a kidney function panel? Did they look into interstitial cystitis?

 

Also see https://rxisk.org/bladder-and-bowel-problems-after-antidepressants/

[Frank85]

Hi Altostrata, sorry for the dark talk first off, texted with a crisis line that got me to settle down a bit.

 

Dr did do a Basic Metabolic Panel and CBC after all the urine cultures, etc. we're negative.  Everything was in normal limits on those, I'm not sure how intricately that looks at kidney function beyond Gfr and Bun/Creat ratio, but those were normal.

 

They have not looked into interstitial cystitis at all, they were focusing in it seemed on anything bacterial or prostate related.  When GP said I needed to see a urologist, they did say they'd expect them to do a cystoscopy or imaging of some sort, so I was kinda shocked when the urologist blew all that off when I mentioned it and just sent me on my way with the tamsulosin.  I am trying to get a 2nd opinion, but no other urologist can see me until October 12th at the earliest - the original urology group my GP referred me to can't get me in until November.

 

I've debated going to the ER and whether they would actually do anything, or just tell me I need to f/u with urology and it would just be a waste of a day and more mental stress unnecessarily.  Also debated trying to get back in with the urologist I already saw sooner, but they were so flippant and unhelpful idk whether that would go anywhere.

 

I am still taking Lexapro, I know my signature is way out of date.  I've continued doing the cuts every ~2weeks, sometimes a bit longer.  Im currently at about .6mg

 

Mental health NP that I see every 1-2 months has tried throwing other meds at me (Duloxetine, Modafinil) but I've declined up to this point.

 

I'll check out that link you shared, ty for the response.

[KenA]

3 hours ago, Frank85 said:

I don't even know what I'm looking for posting here again...I guess just ranting that I've lost all faith in the medical community, nobody seems to care.  I don't think I want to die...but sure seems like I'd be better off, and I wouldn't be a waste of space to my family anymore.  

 

I'm 100% certain I already wouldn't be here anymore if not for my wife and kids, but what am I even doing for them at this point?  I just create more stress for my wife, I'm basically useless at helping accomplish things.  My daughter I can tell just gets upset to see her dad in the state I am, I don't want to do this to them anymore.

@Frank85 Sorry to hear that you are having a rough one right now. It truly is frustrating when we feel bad and can't seem to get any help from the medical community. I truly do hope that you get some answers soon and get some relief!! 

 

Please please don't feel like you are ever a waste of space to your family!! They would be devastated without you I can assure you!! No matter what stress you think you cause them, I promise they still need you!! Just keep hanging in there no matter what!! It is worth it!! Your family needs you!! 

 

3 hours ago, Frank85 said:

I really wanted to be a success story, I'm sorry I failed.

You have not failed!! You just have to keep giving it more time!! It will not always be like this! Life is full of ups and downs. You just have to hang on through the downs until you get back to the ups again!! You've got this!! You have come so far so keep on going and going until you get there!! 

 

 

[Ninabird]

@Frank85

1 hour ago, Frank85 said:

sorry for the dark talk first off, texted with a crisis line that got me to settle down a bit.

You owe NOBODY an apology for expressing the dark period you are going through. Every single person on this site has gone through hell in one way or another. Your feelings are valid. This is incredibly HARD! 

I am deep in a wave myself and just came across your thread. Your family needs you, period. You also need them. When you come through the other side (and you WILL) you will all be stronger and closer than you could ever imagine. 

Sometimes we need to take this journey one minute, one day, one breath at a time. Keep looking up. You are NOT alone. 

Much love and support to you.

Ninabird

[Frank85]

Thank you so much for the kind words @KenA and @Ninabird just the encouragement honestly helps a lot with coping when everything seems so hard.  I'm wishing you all the best in coming through your wave soon as well Ninabird, which I know you will with the great positive attitude you have. 

 

Much love and thanks to both of you.

[jonah2001]

@KenA

Hey Ken, i am very confused. I had a window, what lasted more or less 13-14 days where i felt quite okay. Not completely terrible, but also not perfect. And out of nowhere a wave hit me. I feel very bad out of nowhere. Did you also had such strong waves out of nowhere?

It broke my heart! Because i was doing so "good".

And did you felt completely normal in your windows at 14 month out? Because my windows are more like i feel okay and can imagine how it must feel to be completely normal. 

My windows feel like the groundhog phase that you describe. Not really bad but also not my old me full off excitement and energy. Somedays i feel realy good, but it's more like not good but also not bad..

 

Where your windows the groundhog phase or did you felt not bad but also not good in your waves? 

[jonah2001]

Ohh, sorry wrong topic. I wanted to post that under Kens topic...

[Frank85]

Spent all day in the ER yesterday, couldn't deal with the urethra/pelvic pain anymore and went in, it's also just been making every w/d symptom that much worse.  My brain fog and anhedonia is at an all time high lately, I don't want to do anything (and I struggle it seems figuring out how to even do basic things lately) but lay still and waste away, I guess the constant bathroom trips stop me from doing that at least.

 

Nothing conclusive from ER visit, Renal/bladder ultrasounds and scrotal ultrasounds looked normal.  I brought up Interstitial Cystitis like you mentioned @Altostrata, was told incredibly unlikely by ER doc as it rarely happens to men, but he left it at "nothings impossible I guess."  He denied any possible connection between the symptoms and long term antidepressant use/withdrawal which was not surprising, no doctor I've ever spoken to will even hint that AD use/withdrawal could cause any issues, aside from the all encompassing "flu-like symptoms" they'll admit are possible.

 

Final verdict I was sent home after ~12hrs with no definitive diagnosis, a Hydrocodone prescription (that I likely won't even pick up, can only imagine how much worse that could make my mental state), and a statement to follow-up with a urologist as they'd be better equipped to do any further diagnostic testing (appt. made for Tuesday)

 

Just more discouragement to add to the supply I guess.  Been holding the Lexapro dosage at that .6mg number longer than my usual drop schedule, I figure now would be a bad time to try to cut anymore.  I also did start a Methylfolate supplement this morning that got delivered while I was in the ER; I feel like maybe the Deplin I'd taken middle of last year was possibly helpful (but not affordable to continue) so I'm hoping this MethylLife company product (seemed legit after some research) will offer some sort of benefit, I ordered one that's lower overall dosage than the Deplin I'd taken, but wanted to start there and figured I could always up to multiple pills if I don't notice anything after a bit of use.

[mstimc]

Frank, don't judge yourself too harshly.  A lot of the condemnation you're feeling is being driven by your anxious mind telling you that you've failed or are no good to your family.  Those are lies created by your anxious brain to keep you in its grip.  It sounds like that may also be affecting your request urination.  When I'm stressed, I find myself going to the bathroom much more often. (I'm an an age where prostate issues can be a problem). Quite often, we try to search for a cause of our anxiety, and want to think if only we can find the root ailment--the "something" that's causing it-- we can improve.  Its a natural, instinctive desire and its not bad to have things checked.  But when more than one doctor tells you there's nothing physically wrong, try to accept the diagnoses and move toward positive steps to manage the negative thought cycle. You can and will heal, but there's no timeline 

[Frogie]

@Frank85

 

You might talk with @Moonpie. She is dealing with some issues herself similar to yours right now.

 

Just thought maybe she might have some insight for you😊

[Frank85]

40 minutes ago, Frogie said:

@Frank85

 

You might talk with @Moonpie. She is dealing with some issues herself similar to yours right now.

 

Just thought maybe she might have some insight for you😊

Thank you for that recommendation @Frogie, I will def check out her thread.

 

Appreciate you as well @mstimc, I definitely think you're correct on a lot of what you said, and I definitely know stress/negative thought can manifest physically.  Some of the urinary symptoms are just so apparent I guess I find it hard to fully accept it could possibly all be manifested stress.  If it was just urgency/frequency I'd probably accept that, but the substantial burning/pain along with other apparent symptoms (having passed blood being the most obvious), I don't know, I guess there can be benign causes, as the doctors have said, but it just seems too coincidental they'd occur in tandem.  I do think I need to try and have a more positive mindset/outlook, you are spot on with that and I definitely struggle with it.  Trying to overcome the pessimistic mindset is something I've worked on before, and I need to continue.

[Altostrata]

Strongly recommend you read the article at this link, and the journal articles about interstitial cystitis in men, which is often overlooked because of the incorrect assumption it is "incredibly rare".

 

Quote

Did they look into interstitial cystitis?

 

 

We're about psychiatric drug withdrawal here, so cannot help you much with a medical problem such as interstitial cystitis. I urge you to take charge of your medical treatment and seek specialist attention for this. You may have to kiss a lot of frogs.

[mstimc]

16 hours ago, Frank85 said:

Trying to overcome the pessimistic mindset is something I've worked on before, and I need to continue.

Hi Frank

 

What kind of work have you done to help manage the negative thought cycles?  There are a lot of very effective tools out there!

[Frank85]

Could really use some help/advice from the community.  The urinary issues continue, been working that with urology, but that's nothing to what I've been dealing with the last few days.

 

I stopped the Lexapro on Sept 11th, going from .4mg to 0, felt like I had to try coming off.  I don't know if this was too soon to jump off, but I'm starting to think so.  Since then I'd felt about the same as I had for the past year plus: brain fog, anhedonic, disinterested in life, depressed but mostly manageable. 

 

Then this past Monday, October 24th (so about a month and a half since stopping Lexapro) I became incredibly lightheaded at work, felt an overwhelming sense of dread and felt like I was going to pass out, vision tunneling, actually thought I may be dying.  I got to my car and sat a moment, heart racing began having chest pain, sweats, shortness of breath and continued light-headedness.

 

Ended up calling 911 and an ambulance took me to the hospital.  Spent overnight in the ER before being discharged, but nothing came back abnormal.  I don't know if this was a severe panic attack, but I'd never experienced anything like it and it was terrifying.  Since then anxiety has been nonstop, I can barely sleep and trying to function throughout the day is near impossible.

 

I think I want to try reinstating the Lexapro at a low dose (.5mg?) and see if this is a postponed withdrawal I'm going through, but that's where I want to get advice from everyone's experience here on if that is a good plan and if that dosage makes sense.  @Altostrata or anyone else with experience on this does that seem reasonable?

 

When I had Paxil withdrawal over 10years ago, I never experienced anything to this level, I did have severe insomnia and frequent brain zaps back then.  With this current Lexapro taper I haven't had brain zaps at any point, which led me to think I wasn't having any bad withdrawals but maybe I was wrong on that and the symptoms just differ.  Again, any input is extremely appreciated.  Thank you all.

[Frank85]

As a follow-up to my previous questions:  Does it seem likely this is delayed withdrawal, or something else entirely?  If I do reinstate at the .5mg, how long do I give it to see if there's positive change?  If it doesn't help after some amount of time do I increase the dose more, just stop completely again, taper off from there?

 

Sorry to ask so many questions, just in a really bad way right now.  Another symptom I forgot to mention: constant shaking/shivering, like if I were cold but I'm not.  This is all just so surreal, I don't know how to go forward.

[RachelSusan]

@Frank85 Hi Frank, I see you tagged Altostrata but in case she doesn't get back to you quickly you might want to look through your thread and tag other moderators that have answered you in the past.

 

Sounds like withdrawal to me. I am not a moderator but just from what I learned from this site I would not advise going back on at .5mg since you came off at .4mg. They have always suggested to us that we don't go back on higher. A mod could tell you if going back on at .4mg would be advisable or if they would suggest slightly lower. What I would do for myself would be to hold after I reinstated. I would hold until I felt better. For me, since I was a slow healer, that would sometimes be weeks to a month.

 

I know your pain, I have had many of the same symptoms you describe and I had a few emergency hospital runs because I didn't know what was going on and had to rule out other possibilities. I have a lot of empathy for you. You will figure it out though and you will get back on track.

 

Warm wishes.

Edited October 27, 2022 by RachelSusan
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