Alice1: Lexapro withdrawal

[Jennings]

Hey Alice,

 

How are yin doing.

 

im praying for you.

[Alice1]

5 hours ago, Jennings said:

Hey Alice,

 

How are yin doing.

 

im praying for you.

Hey J 

I’m hanging in there. Still really rough, especially from 1-5 pm but I see subtle differences. I definitely think it has peaked, plateaued, and is ever so slightly starting to settle.  It has a very long way to go though.  I’m walking everyday now, and I try to do a simple activity like an errand or a chore everyday.  My days and nights are completely jacked.  I fall asleep at 8 am and wake up around 1 pm which is the start of this waves epicenter of the day.  
 

Only 2.5 months out so still a ways to go.  The sex waves are back which blows ( no pun intended ).  I drove my hot rods around yesterday. It was 65 degrees and they needed their legs stretched. Not sure if hot rodding is best for recovery but it was fun and needed to be done. I need to get back to work, so I’m looking forward to this wave settling.  I’m trusting @Altostrata and @brassmonkey opinions about this settling slowly but surely. 

 

I read about your emergency event.  I think you made a wise decision not to take anything powerful, but if your life is on the line you have to take it. I see you did take the necessary meds ( anesthesia, antibiotics, mild pain meds). Don’t worry.  Waves are  temporary. I’m praying for you too buddy.  Thanks for checking in.  
 

Jeff 

[Altostrata]

On 3/10/2021 at 3:44 PM, Alice1 said:

I fall asleep at 8 am and wake up around 1 pm which is the start of this waves epicenter of the day.

 

Do you sleep from 8 a.m. to 1 p.m.? Is this your usual sleep schedule?

 

It may be better for you to have a more typical sleep schedule. See

 

 

What is the sleep cycle?

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

White noise devices for sleep

 

Melatonin for sleep: Many people find it helpful

 

[Alice1]

14 hours ago, Altostrata said:

Do you sleep from 8 a.m. to 1 p.m.? Is this your usual sleep schedule?

 

@Altostrata I do sleep from 8am to 1pm. It’s broken sleep, but there is sleep there.  I think the reason for this schedule is because this wave was severe enough to keep me from working, and after sleeping in till 3-4pm everyday for a month I just can’t get to sleep till 8am the following day.
 

I have recently forced myself out of bed earlier the last two days, and do some light chores and activities, and last night I did get quality sleep on a more normal schedule. Not completely normal but a lot better than before.  
 

Thank you for the links. I’ll start enforcing this from now on.  
 

Jeff 

[Alice1]

@Altostrata 

Just to be completely detailed. I’d fall asleep at 8am and wake at 1pm. The Akathisia starts at 1pm-ish, and I would stay in bed and ride out the worst of the Akathisia till about 4 pm.  Then I would get out of bed.  
 

The Akathisia is the Terror Panic Fear Restlessness type stuff.  Non- pacing. 
 

As I said in the last post I’ve forced myself to get out of bed earlier the last couple days.  It kinda makes that time when Akathisia peaks everyday feel worse, but the depression of “missing the day” so to speak is a lot better.  Makes me feel a little more “part of the normal world”.  
 

Jeff 

[Altostrata]

Please work on a more normal sleep schedule that will match up with your body's own natural cycles.

 

Turning off all lights at 10 p.m. and taking melatonin may help you remodel your sleep schedule.

[Alice1]

@Altostrata

Ok , sounds like a plan.  Thank you for your professional advice. It means a lot to me and my family.  Again, thank you for what you do.   
 

Jeff 

[Altostrata]

You're very welcome for my not-professional advice!

[Alice1]

@Altostrata

What ???   You know more about this situation I’m in than my own doctors.  I totally understand the liability disclaimer, but you should see the looks on their faces when I try to explain things. Your wisdom and your site allowed me to get close to being well after four years. Don’t slack off on me now, especially if I have to do this all over again.   
 

Jeff. 

[Alice1]

@brassmonkey

Hi Brass, 

You once stated that waves follow a particular pattern of :

Starting suddenly 

Building

Peaking

Then subsiding. 
 

Is the same true for waves within the wave ?  
 

What I mean is I’m in this terrible setback from kidney stone treatments.  I’ve noticed that it followed that same pattern.  Last week I had no choice but to do some strenuous yard work and activities to get ready for spring. I knew it was going to rev me up, but I had to do it. I have noticed that same pattern again , meaning I’m getting worse everyday again.  The original setback seemed to have settled somewhat, not much, but it wasn’t building anymore, but now we’re back to getting worse again, and it hasn’t even been a week since the strenuous activities.   
 

Jeff. 

[brassmonkey]

Hey Jeff-- sorry to hear that things keep compounding. That's a real problem with waves, that they can have sub waves spring up inside them, and we get stuck having to do things that we know will trigger them. Trust in knowing that each wave will sort itself out and settle goes a long ways to helping. Doesn't make them feel much better, but it really can shorten them. Also, while in a wave moderation, if at all possible, is the best course of action. I know there are a lot of things we can't get out of doing, but if we have to then minimal effort and lots of breaks are called for. You mentioned the kidney stone wave was starting to settle, which is excellent.  With any luck the yardwork wave won't last too long. I found that a "little hair of the dog" with caution and moderation sometimes helped sort things out and often helped leave things at a better place when all the waves subsided.

[Alice1]

@brassmonkey

Do those sub waves typically build and peak like the main wave ?  
 

Jeff

[brassmonkey]

Yes.

[bheb]

Hi Jeff/Alice.

 

I just realized your setback was at least partially caused by doxycycline. Currently dealing with this. It’s horrible. Akathisia flare. Need to pace.

 

I took doxy in February with a flare that only lasted for the duration of treatment (such a persistent infection). This one is lasting longer. I’m a bit alarmed. But trying to accept the wisdom here.
 

Hope things are continuing to plateau/improve for you.

[Alice1]

@bheb 
Oh geez.  Yes I believe doxy is my main culprit, but I’m pretty sure the pain meds are contributing as well. I contacted Dr. David Healy and he confirmed it. He also said it should heal, but he couldn’t say when.  I’ve been in Akathisia hell for 4 months straight. It’s not constant pacing but it’s more brutal than my first WD.  It’s not just doxy though.  I have corresponded with 3-4 others who’ve had terrible Akathisia setbacks from antibiotics and none of them were from doxy.  They were just as bad if not worse.  
 

How much doxy did you take ?  

[bheb]

17 hours ago, Alice1 said:

@bheb 
Oh geez.  Yes I believe doxy is my main culprit, but I’m pretty sure the pain meds are contributing as well. I contacted Dr. David Healy and he confirmed it. He also said it should heal, but he couldn’t say when.  I’ve been in Akathisia hell for 4 months straight. It’s not constant pacing but it’s more brutal than my first WD.  It’s not just doxy though.  I have corresponded with 3-4 others who’ve had terrible Akathisia setbacks from antibiotics and none of them were from doxy.  They were just as bad if not worse.  
 

How much doxy did you take ?  

yeah I hunted around for info on doxycycline and akathisia and couldn’t find anything. I found someone in facebook groups who got it just from doxy for a few months. But that was it.

 

And Healy’s website was the only one that mentioned it! Said it acted like SSRI but beyond that I couldn’t find any evidence that it had serotonin reuptake inhibiting properties. So who knows. But all we know is we certainly feel bad after taking it!

 

I had tolerated doxy before so I’m thinking maybe this is a combo of stress + doxy, like with you could be combo of pain meds + doxy.

 

I took 100mg twice a day for a week. I also did this in February and had symptoms but they went away after stopping. 

[Alice1]

@bheb

I questioned Healy about doxy having SSRI properties and he said “nobody knows for sure, but doxy definitely causes Akathisia”.  Those were his words.  There’s somebody on here (SA) that took it and got 10/10 anxiety for 8 months straight plus other symptoms.  Like I said earlier. I’ve read countless stories of all different kinds of antibiotics causing people in WD major CT like setbacks. Not just doxy. 

[bheb]

3 hours ago, Alice1 said:

I’ve read countless stories of all different kinds of antibiotics causing people in WD major CT like setbacks. Not just doxy.

Oh for sure. Especially fluoroquinolones.

[Alice1]

@Rosetta

Hello, I’m reaching out to you because I’ve seen you encourage many people on here and I thought maybe, if you’re willing, you could share your opinion on my situation.  I know nobody’s knows for sure, but the more opinions I get the better I feel at least.  
 

My story is kinda simple.  I was on Lexapro 20mg for 20 months and CT’d.  I suffered Akathisia for 4 years. It was mild to severe at times, but did eventually start to settle out.  At the 4 year mark it was barely noticeable. 
 

4 months ago I had a kidney stone and was given :

1 dose morphine 

1 dose dilaudid 

1 dose toradol 

4 doses of Doxycycline ***aka***
3 doses Motrin. 
3 doses Prilosec 

 

I highlighted the doxy because Healy says it can cause Aka.  All this medication was taken over a 3 day period and stopped.  I was supposed to take doxy for 10 days but stopped at 2 because I could feel that something wasn’t right.  
 

Needless to say my Akathisia is not only back, but it’s  twice as bad and the psychotic terror is something I’ve never experienced before.  I have 20-30 other sxs, but those aren’t as concerning.  This has been going on for 4 months.  I haven’t taken anything to treat it, although I’m very tempted.  
 

I very much want to steer clear from any additional medication.  
 

In your opinion, is this something that will lessen again ?  It seems like it’s only getting worse everyday, but it’s hard to say that because everyday is totally different. One day could be severe agitation, and the next day could be psychotic terror and panic w/ DP.  
 

I just thought I’d ask your opinion.  
 

Jeff 

[Yesyes123]

Hey @Alice1 my thoughts are with you. You are an amazingly strong person who's winning a big fight. I can tell by the way you write and your attitude that you are a winner already.

 

Here's to your Plateau/ improvement

 

[Alice1]

@Yesyes123

Thank you For your kind words and encouragement. 

[Vonnegutjunky]

Fellow aka suffers here. Got barely noticeable, I got Covid and I think it’s making a resurgence. 
 

im sorry your suffering. I know how it feels. And I know the psychotic terror all too well. Hang on that will pass. Sending love your way. 

[Alice1]

51 minutes ago, Vonnegutjunky said:

Fellow aka suffers here. Got barely noticeable, I got Covid and I think it’s making a resurgence. 
 

im sorry your suffering. I know how it feels. And I know the psychotic terror all too well. Hang on that will pass. Sending love your way. 

Thank you so much.  Hey, aren’t you on a couple of YouTube videos ?  
 

I had akathisia beat and those kidney stone treatments brought it back with a vengeance x 10. 
 

I think I saved your 4th year video. You make me feel not alone and you make a lot of sense.  You described Akathisia perfectly. It’s NOT just pacing and restlessness.  
Again, Thank You for your encouragement.  
 

Thank you. 
 

Jeff. 

[Vonnegutjunky]

Yes that’s me. I’m so glad my videos helped. Oh it’s terrible. Yes Covid got my aka ramped up again. But even thought I had to take a break from work (I may end up fired I don’t know yet) I keep telling myself, I’ll make it, and so will you. These horrid feelings won’t hurt us physically. We can survive them. So hang on and know that healing happens. Pm me on here anytime if you like. 

[Alice1]

1 hour ago, Vonnegutjunky said:

Pm me on here anytime if you like. 

I will. Thank you 😊 

[Rosetta]

Alice,

 

Yes, of course, it will go.  I think that if I got it again to any great extent, and it lasted long than I felt I could handle, I would take something for it.  Alto or one of the Mods might tell you what you could ask your doctor to prescribe. Edit:  There is a risk that taking something will make it worse.  They may decline to suggest anything.  I have not read your whole thread, and I don’t understand all the ins and outs of what the Mods do or why. 
 

I’m sorry this is happening to you. I can’t write anything inspiring here because the dystonia is back, and typing increases it’s severity.  Know that it will go away.  The body always returns to homeostasis.

 

🧚🏻‍♀️Rosetta

Edited April 25, 2021 by Rosetta
Added underlined

[Alice1]

I’m having trouble figuring out whether or not I’m exacerbating this setback with my daily activities. Everyday is different, but I could swear things are getting worse. I can’t remember how bad it was a month ago which adds to the confusion.  
 

Everyday I go for a 15-20 minute walk, 30 minute drive in the country, go to my daughters 3 hour long track meets, and I usually try to find an activity of some kind. Whether it be a chore or shopping etc.  
 

Ive read on Akathisia sites that these things promote healing, but then Baylissa says I shouldn’t be doing stuff like this everyday if I’m in an acute state.  
 

ive always had a problem with doing nothing and staying at home.  
 

Any thoughts from fellow Aka sufferers ?  

[Rosetta]

Yes, if you ask me, that is too much everyday.  Is the country driving in order to go somewhere or only for the enjoyment?  Driving is very hard on the nervous system.  You are asking it to do multiple things at once.  Can you stop driving somehow?

Every day your daughter has a 3 hour practice? Or once a week? I’m not sure how you avoid that, but that is too much, in my opinion. You need to be resting at home.  Can someone else take her?  I’m sure you want to be there, but if you get well faster then you can be there later.  I would go once a week or once every 2 weeks if I had that option.  Again, the driving — it’s very hard on you.
 

Twenty minutes of walking a day is all I would do if I had no responsibilities to take a child to practice or school.  If you do have to drive your daughter, then you should spend the rest of your time only walking - gently.  I would not drive any more than absolutely necessary.

[Vonnegutjunky]

I agree don’t over exert your cns. A lot of aka is connected to inflammation. 

[Alice1]

Yeah, I know I shouldn’t be doing much.  I mean there are some things I absolutely have to do. The track meets are only once a week and there’s only 4 left. The drives ?  I do remember Jen Leigh having a setback from driving, well at least that was a component.  The walking everyday is just a reason to feel like I’m trying to facilitate the healing.  I remember when Aka left the first time.  I wasn’t walking at all. However, I was working, and I can’t even do that right now.  
 

I feel like I have to do something in order to heal again.  I know time is the answer but I’m running out of money. This is where shipko says to reinstate, but I just can’t risk that.  If I get worse from reinstating I’ll really be up the creek.  
 

Thank you for responding to my post @Rosetta  @Vonnegutjunky I guess I’m going to have to balance things better.   
 

Jeff. 

[bheb]

3 hours ago, Alice1 said:

 

Ive read on Akathisia sites that these things promote healing, but then Baylissa says I shouldn’t be doing stuff like this everyday if I’m in an acute state.  
 

ive always had a problem with doing nothing and staying at home.  
 

Any thoughts from fellow Aka sufferers ?  

 

I think everyone is different.

 

I run everyday. (I actually only stopped during my third antibiotic round and have just picked it back up again.) I started to run right when aka was getting better and it might be one thing that helped me to continue to get better. There might be a neurogenesis vs inflammation (As VJ highlights) tradeoff. I continued to do it through the worst of mental terror and think it helped that as well.

 

All you can do is trial and error. Try taking off from everything, keep track of symptoms. Then try exerting yourself maybe, record symptoms, etc. 

 

21 minutes ago, Alice1 said:

I feel like I have to do something in order to heal again.  I know time is the answer but I’m running out of money. This is where shipko says to reinstate, but I just can’t risk that.  If I get worse from reinstating I’ll really be up the creek.

 

Yeah, this is impatience talking. This is how I feel too. But it's how I "feel," not necessarily true -- you feel so horrible that surely you must counteract it with something right? Should be an epipen for this torture. Anyway, I am an adverse reaction case so reinstating would do nothing for me. 

 

This doesn't mean I won't get desperate and try some supplement. I might. But the truth is this stuff is way more complicated than anyone knows so there's not really a clean antidote to be found. But you know this of course. It's hard. I have to type this out to remind myself as well. 

[Alice1]

Setback Update: 4.5 months. 
As of two weeks ago I am back at work full time.  This isn’t because I’m feeling better ( even though I had a great 5 day window in April ), it’s because staying at home in bed or on the couch is doing me more harm than good. I read that if possible one needs to stay active despite the suffering in order to facilitate healing. I believe this is what got me through a CT in 3.5 years the first time. I have every reason to believe it will help this time. 
 

This setback has been brutal. The symptoms are so much more dark and painful. I have read everything I can and realize that this could be a “round 2” as far as duration goes. It could also go quicker. I have some friends who are going through this as well and everything they’re going through is what I’m going through.  Which validates everything, but they’re months and months into it.  
 

I do get glimmers of healing.  Throughout the day I get brief (and I mean brief) periods of calm. Like literally 2-5 minutes worth, then back to chaos. This happens 20 times a day. I sleep like a baby throughout the night but when morning comes, BAM!!!!!  Definitely looking forward to that subsiding.  
 

That’s another reason for returning to work. I absolutely have to get moving even though it doesn’t really make it better. Plus, my sleep cycle was soooo jacked.  I was waking at 5 pm and going to bed at 7 am or later.  When I arose the world was winding down, and that was BS, for me at least.  
 

So, I am only at 4.5 months and still very very acutely symptomatic, but I feel this is my path to healing as it was before.  Healing to everyone.  

[Yesyes123]

You're awesome @Alice1.

 

One day this will all be just old memories.

[Rosetta]

Good God.  I just read your thread.  You are living through what happened to me the first time.  The “psychotic aka.”  So, now that I understand what’s going on, I think you are right to avoid any and all drugs, etc.  It’s too risky, and not worth it.  
 

Have you tried hot and cold?  Hot showers, hot baths, cold showers, ice packs, anything like that — just to get a break.  A weighted blanket might be useful.  The weight is based on your own body weight — 7-10 percent of that, I think.  
 

I didn’t realize you had aka once before.  Of course, it will end, but how to spend your time until it does, that’s the question.  Acupuncture?  Is that an option where you live?  The person would have to understand that you can’t be activated.
 

I’ll be thinking of you.  — Rosetta

[Alice1]

@Rosetta

Hey, 

Yes I had Aka beat. I was about 75-80% healed. I only had a little spell that was tolerable 2-3 times a day and it only lasted 5 minutes.  Then I had this kidney stone and the treatments re-ignited it to levels I’ve never experienced before.  
 

Yes, I’m not going to take anything, not even the Covid vaccine. You’re absolutely right about passing the time. That’s why I chose to go back to work.  My work is not that strenuous at all, and I have a lot of time to just try and relax.  I cannot stay home.  I will not be able to cope with the uncertainties of when this will fade. 
 

I am getting the little glimmers of relief here and there.  Two weeks ago the whole thing subsided about 65% for 5 days , but now I’m back in a wave.  It’s so weird how when you’re in a window you feel confident that you’ll recover and when in the wave you’re not so confident.  I hate that feeling.  I have a daughter who’s my life and I cannot let her down.  I must beat this again.  
 

Jeff. 

[Alice1]

@Yesyes123

Thank you Brotha !!