Frank85: need help/advice

[Frank85]

Thank you @RachelSusan, I appreciate your reply and input, I do feel like this is likely a delayed withdrawal as well.  Thanks for the idea to tag other mods as well.  @Frogieor @Gridley would either of you have any insight for me?  Much appreciated.

[Frank85]

@Altostrata @Gridley @Frogie This morning I did reinstate the Lexapro at .5mg, I had to try something.  I don't know what else to do, I haven't had any windows at all since the 24th and I'm scared this is how I'm stuck now.  I know that's counterproductive, I've been trying CBT techniques and positive thinking, breathing techniques, mediation, all the things I've read on and worked on previously with a therapist but nothing has given any relief.  At least through the taper and after stopping the meds completely up until now I'd at least gotten some moments of "clarity" where the fog is at least somewhat lifted/lessened in intensity, and there's no anxiety and less depression.  Now that's all been gone, still can't get any decent sleep (if I fall asleep I wake up shortly after and then can't fall back asleep) and I don't know what else to do.

 

I'm just hoping with all that's left in me that this reinstatement helps.

[RachelSusan]

@Frank85 I am glad you reached out to the mods.  The website is very active with a lot of people asking questions and so few mods, who are volunteering their time for free, so they don't always respond immediately.

 

In the post of yours that I saw you asked the community for help so I responded. I don't like to insert myself unless asked.  So I hope it is alright with you if I ask a few more questions and make some observations. Did I read your signature correctly,  that in 2022 you were making a 10% cut every two weeks, or did you mean a total of 10% but it was split between two weeks? If you were  doing 10% every two weeks that would be 20% a month.  This combined with you going off at .4% may be what caused all the problems.

 

There are certain suggestions that are made on this website and I disregarded them at the beginning of my taper because I was desperate to get off. I had terrible symptoms that lasted way too long. I really hate to see you do the same thing to yourself, if that is what is happening here. If I misread your signature please forgive me for saying anything.

 

My fingers are crossed for your reinstatement to go smoothly. Please also give it a a good while before you consider doing anything else. I know they say it takes four days for it to enter into your blood stream but I took that to heart and if I didn't get any relief I would start trying to figure out what to next when I really should have done is just give it more time.

 

Please keep posting and let us know how you are doing.

 

Edited October 28, 2022 by RachelSusan
typo

[Frank85]

@RachelSusan I'm absolutely ok with you asking questions and giving input, in fact I appreciate it greatly.  I also understand the mods are all volunteers and busy with many things.

 

I believe you read the signature correctly, I was doing a ~10% of the previous dose cut around every 2 weeks, sometimes a little longer depending.  So not 10% of the total original dose, 10% of the most recent, which yes comes out around 19% of the two dose back reduction per month I think.  Towards the very end the reductions were larger as the doses became hard to measure, I could really only reliably get to the nearest ~.1mg-.2mg. The schedule basically looked like:

 

7/30/21: First cut from 20mg to 18mg

8/14/21: ~16.2mg

9/3/21: ~14.58mg

9/17/21: ~13.122mg

Continued on at that approximate rate until

7/21/22: 1mg

8/6/22: .8mg

8/20/22: .6mg

9/3/22: .4mg

 

After reading more in depth this was probably too fast, and the jump off point too high...there was an email from this website sent out around when I joined referencing this link: 

https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants

 

and I kind of followed the tapering plan they have laid out for Paroxetine, figuring that to be one of the worst withdrawal offenders (and the med I'd been on in the past by far the longest) and thinking I'd be safe doing that.  They also list .6mg as the stopping dose so was also thinking at the time .4mg would be ok.

 

I always planned if I felt any significant withdrawal I could slow down/pause, but really I seemed to feel the same through the entire taper once I started the 10% cuts - I started out feeling lousy at the max dose (Lexapro just never seemed to work for me), and didn't really feel any worse as I went along so continued figuring I just needed to get it out of my system.

 

Even once I dropped from the .4mg to 0 (last dose was actually Sept. 11th now that I'm looking at my spreadsheet, so the 12th was the true dropoff date) I didn't notice any particular change, not until this experience on October 24th.  The only other new symptom issue I experienced over the tapering period was the urinary symptoms I mention/go into detail about in a previous post: those symptoms started on August 17th, I would have been on .8mg at that time.  I don't know whether the Lexapro or the taper has anything to do with that or not, it's still an ongoing issue I've been dealing with urology for.

 

Now that I've reinstated I do plan to give it time.  If I have to make a liquid and get small syringes in the future to be more accurate I'll do that.  One of the reasons I targeted .5mg for now was figuring with my error margin I should just shoot for between the final doses I was on.

 

Thank you again for taking the time to read and reply to me, I really do appreciate it.

 

[RachelSusan]

@Frank85 So it looks like the mystery is solved. 

 

I know I tapered off a different medication than you are currently tapering off of, and of course we are two different people, so my results may not be identical to you, but the following is what I found for me.  I found the amount I tapered was cumulative. So what I mean is that even though I might have had good results from a decrease over 10% and then another decrease over 10%, or any percent for that matter, it added up until it all came crashing down and I had a results much like you just experienced.

 

The good thing about me is that I did everything wrong. Yeah, I know that might sound funny and not definitely not good for me but good for other people on this site. I say good for others because I can relate to almost anything that anybody might do that would end with pain and suffering. I can definitely relate to why a person would want to do a quicker taper.

 

I think you have a good plan of action and I have my fingers crossed that this resolves quickly for you.  I am following you and I look forward to hopefully reading good news as to how you are feeling.

 

I'm going to go now and read the link you provided. 

 

Warm wishes.

 

 

Edited October 28, 2022 by RachelSusan
typo - I can't spell.

[Heath]

@Frank85 Hello! I’ve been reading your signature some. I’m glad you are seeing some relief! I think you made the right decision. I’ve had to reinstate a few times myself. I does get better! It does usually take me around 3 months to really start feeling better and 6 months back to myself. I would definitely hold where you are for about that same time frame. Get good and stable for next taper. 
 

Rachelsusan is definitely correct the tapers build up after a while , you don’t notice it the symptoms are so minimal and then crash comes. This happened to me this summer after tapering slowly for about a year. So I plan to hold for 6 months. I have found some 1 ml syringes that have 0.01 increments on Amazon that I use with brass monkey slide. 
attached below is a tapering calculator that I find very easy to use. 
Hang on 💪
 

http://www.taperoff.co/

[Frank85]

@Heath Thank you for the encouragement!  Do you happen to have a link to the syringes you use?  I definitely want to look into ordering some.

[Heath]

Amazon 

 

BSTEAN 1ml 1cc Syringe with Luer Slip Tip, No Needle, Non-Sterile (Pack of 25) https://a.co/d/fyYInsF

[Heath]

May need a standing magnifying glass to see .01 lines clearly I know I do 😀

[ChessieCat]

Depending on what liquid you are using, you can dilute it which would mean you need to take a larger amount of liquid to get your dose.  It makes it much easier and more accurate.

[Altostrata]

On 10/27/2022 at 4:42 AM, Frank85 said:

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. 

 

These withdrawal symptoms are very familiar to us, as is the worsening of withdrawal symptoms that you have experienced. This is not delayed withdrawal, this is withdrawal symptoms that got worse, as they will do sometimes.

 

On 10/27/2022 at 8:59 AM, Frank85 said:

If I do reinstate at the .5mg, how long do I give it to see if there's positive change?

 

You'll probably feel slightly better immediately. We cannot predict how long it will take for you to stabilize on a reinstatement. You'll have to let us know how you're doing.

 

See 

 

What is withdrawal syndrome? 
 
About reinstating and stabilizing to reduce withdrawal symptoms 
 
The Windows and Waves Pattern of Stabilization 

 

[RachelSusan]

@Frank85 How are you feeling?

Warm wishes.

[Frank85]

@RachelSusan Honestly not great, but hanging in there.  The anxiety does seem down a bit since reinstating so that's good, and I've been able to sleep a bit better at least.  The brain fog/fatigue is still just so severe, it's like my body and brain are in quicksand and it makes it so hard to accomplish anything.

 

Hoping to get at least somewhat of a window soon where I feel some mental clarity, I'm sure it will come once things stabilize some more.

 

Appreciate you checking in and hope you are well!

[RachelSusan]

@Frank85 Sounds difficult.  Don't loose hope, it sounds like you are on the right track. You say the anxiety is down a little bit and sleep is improving, which is a very good sign. It took me a while to recover after reinstatement. The waiting part was difficult for me but relief did come.  The hard part now is not to make any changes.

 

 

[Frank85]

Been a while, and having a really bad day so just felt like I should post.  Honestly the last month or so has been probably the worst of my life, it's getting harder and harder to keep the will to go on.

 

Haven't made any changes recently med wise, but my cognitive function is in the toilet.  I'm on my 5th or 6th crying fit of the day.  I try to do some simple task I've done forever with no problem and struggle badly with it, feel a sense of dread and just start crying.  Looking at numbers and minor problem solving just feels painful.  Just typing this post and going through and fixing all the errors is so upsetting.

 

My one Dr wants to start me on TRT, my testosterone has been low since the first time they checked it in the middle of 2021 and every time since, most recent measurement was the lowest yet at 185 ng/dl total and 6.5pg/ml free (ref range 264-916 and 8.7-25.1)

 

Everything I've read in the past in studies says I should be on the high end of the range at my age.  I've also read some not so great stories on here relating to trying TRT, but at this point I'm probably going to try it.  I feel like there's nothing to lose and potential for improvement, and if I try to just keep going like i am I'm going to do something stupid eventually or end up admitted and pumped full of god knows what anyway.

 

Just needed to put this all out there I guess, i hope everyone else reading is doing well in their recoveries, and i hope to get there myself as well.

[Frank85]

Didn't sleep at all last night, not even like my mind was racing or anything just a constant pressure in my head and physically could not sleep.  

 

I'd do anything for even just a fleeting moment of clarity at this point, being trapped in this fog is hell.

[RachelSusan]

@Frank85

 

I have been where you are currently. Even surviving minute to minute was difficult for me. The constant pressure, the insomnia, racing thoughts and the brain fog are all things I have experienced.  And I am sure you are experiencing other symptoms as well, as did I.  I wish I could make it better.  All I can say is that it does get better.  I feel I am fully recovered from my Anti-Depressant withdrawal. I have been experiencing other symptoms from another drug situation but that is not germane to this situation. I went cold turkey from the anti-depressant, reinstated and started on a too fast taper.  The entire situation was h@ll but I survived and felt great after first stabilizing and then eventually getting off.  Just hang in there my friend.  It is indeed a hideous situation but your will recover.

 

I don't have the knowledge or education to comment on TRT or what role that it plays in your withdrawal.  Could lack of testosterone be adding other symptoms into the mix?  I hope that once you start taking it you will let us know what your experience is.  I hope it helps alleviate some of the symptoms.

 

[mstimc]

8 hours ago, Frank85 said:

Didn't sleep at all last night, not even like my mind was racing or anything just a constant pressure in my head and physically could not sleep.  

 

I'd do anything for even just a fleeting moment of clarity at this point, being trapped in this fog is hell.

Hi Frank

 

I've been where you are,  In fact, just the night before last my body decided to kick into high gear in the middle of the night and my head felt "full".  I got very little sleep and yesterday I felt like 10 miles of bad Georgia road.  I used to cast about for causes and cures, but I've found the best way to handle it and minimize the trapped feeling is to accept it to a degree--that its a feeling and its here, but its another way my anxious mind and body are trying to control me.  I had it bad--for many months, on my way to work I'd pray to make it through the day, and on my way home I'd pray because I was dreading the next day.  Once I started practicing acceptance and coping skills, I found it gradually decreased.  I still have to occasional bad day when my mind and body decide to play tricks for me, but I tell myself one bad day doesn't mean the next one has to be bad, too.  If I could recover, you can too.  It will come with time. 

[Frank85]

Been a few weeks since my last post.  I finally had my first bout with Covid (tested positive January 22) after managing to avoid it all this time - one of my kids picked it up at school and then it ran through the household.  My wife and I did both take Paxlovid which seemed to help a lot with shortening the duration, my first couple days were really bad before starting it and symptoms improved pretty quickly after.

 

Now I'm just dealing with the lingering post-covid effects: it seems to have taken the brain fog, fatigue, and other symptoms I've been experiencing forever and exacerbated them even further.  My cognition feels like it's completely in the toilet, and I'm thinking I'm going to need to take a medical leave from work as I simply can't function at the level I need to be able to work safely and effectively.

 

I had a really bad night yesterday, I was feeling so run down and out of it that I went to bed early.  I was woken up around 10:45pm by my heart racing, became short of breath with chest pain and really bad nausea.  I woke my wife in a panic, she helped me settle in a bit once my heart rate finally slowed, but it was an awful ~30min of all those symptoms along with shaking uncontrollably.  I feel like it was likely a panic attack of some sort, but it was so bizarre the way I just woke up right into it, no warning/lead up or anything just right awake as it wws happening.  I wear a fitbit and looking at the data this morning it showed my HR spiking immediately to almost 150bpm right before/as I awoke.  I don't know if anyone else has experienced anything like this, the only similar I have was the episode leaving work back in October of last year, but that was more of a light-headedness along with chest discomfort and sweating, whereas this was way more elevated heart rate, pain, nausea and shakes.  Maybe the it's just another thing being made worse by the Covid recovery.

 

Doing my best to hang in there otherwise, it just gets so hard not being able to function and feeling like I'm just wasting space and not actually doing anything if that makes sense.  I try, but my body/mind just don't let me most of the time no matter how hard I try.

 

@mstimc and @RachelSusan I do greatly appreciate both of your previous posts and sharing your experiences, it gives me hope this can still resolve at some point.

 

On the testosterone front, unfortunately I had to cancel the appt to start the injections due to Covid, but that's currently rescheduled for next week so I can update after that's taken place.  I am a little concerned about the dosage/dosing interval the urologist has planned, as it's very low compared to anything I've seen in research I've done, but I'm hoping if it is too low and causes problems they'll be amenable to increasing the dosage or at the least the frequency after follow-up bloodwork.

 

Thank you to anyone reading, and hope everyone is staying strong and hanging in there.

 

 

 

 

[RachelSusan]

11 hours ago, Frank85 said:

I wear a fitbit and looking at the data this morning it showed my HR spiking immediately to almost 150bpm right before/as I awoke.

@Frank85  Hi Frank85.  This has happened to me quite a few times when I was in withdrawal. It was accompanied by the shakes. I could actually watch the heart rate come down once awake but I would have the feeling of being on high alert afterwards, sort of an excess adrenaline thing. It was most uncomfortable and distressing for me.  The occurrences of these episodes slowly diminished with time. For me it took about a year for it to go away completely. I really hated it, and it interfered with my sleep.

 

So sorry to hear about the Covid. I am sure it has made everything that much worse.

 

Good luck with the TRT. Yes, please keep us posted.

[Frank85]

3 hours ago, RachelSusan said:

@Frank85  Hi Frank85.  This has happened to me quite a few times when I was in withdrawal. It was accompanied by the shakes. I could actually watch the heart rate come down once awake but I would have the feeling of being on high alert afterwards, sort of an excess adrenaline thing. It was most uncomfortable and distressing for me.  The occurrences of these episodes slowly diminished with time. For me it took about a year for it to go away completely. I really hated it, and it interfered with my sleep.

 

@RachelSusan I'm so sorry you've had to experience this as well, thank you for letting me know though - at least I feel a little less alone knowing it's something others have gone through, though I definitely wish nobody would ever have to suffer like that.

 

I will definitely update after the first TRT shot and as the treatment continues with how things are going.  Appreciate you very much as always.

 

 

[Heath]

On 1/12/2023 at 6:04 PM, mstimc said:

used to cast about for causes and cures, but I've found the best way to handle it and minimize the trapped feeling is to accept it to a degree--that its a feeling and its here, but its another way my anxious mind and body are trying to control me. 

 

4 hours ago, RachelSusan said:

The occurrences of these episodes slowly diminished with time. For me it took about a year for it to go away completely. I really hated it, and it interfered with my sleep.

 

1 hour ago, Frank85 said:

at least I feel a little less alone knowing it's something others have gone through, though I definitely wish nobody would ever have to suffer like that.

frank85 My wife and me tested positive Covid on Jan 24. Morning Nervousness started about 2 or 3 days later . Then had a major panic at 2 am a week later. It was dark/bad. Don’t know why it happened Covid or NyQuil. It’s in my intro. Been struggling heavy. keep telling myself it will pass. 

mstmic and rachelsusan thank you !! Your words encourages and reassures me that I will make it. It comforts me knowing y’all made it through. 

 

remind ourselves searching for cause and cure makes it worse 👍

 

hang on we will make it through 💪