NoMoreLexapro: short time on Lexapro - still hell being off

[Gridley]

1 hour ago, NoMoreLexapro said:

I finally have a therapist I like (3rd one this year).

That's great, NoMore Lexapro.  Very good to hear this.

[Altostrata]

Often, you need to take 6 fish oil capsules per day to take 3,000-4,000mg EPA + DHA, which is what we recommend.

 

You might be able to take magnesium 3 times a day.

[NoMoreLexapro]

3 minutes ago, Altostrata said:

Often, you need to take 6 fish oil capsules per day to take 3,000-4,000mg EPA + DHA, which is what we recommend.

 

You might be able to take magnesium 3 times a day.

 

Are there any side effects or dangers from taking too much omega 3?

[Altostrata]

Please read the links!

[NoMoreLexapro]

17 hours ago, Gridley said:

That's great, NoMore Lexapro.  Very good to hear this.

She's very understanding, has been through a chronic illness herself, and really distrusts the mainstream medical establishment (as do I, after the hell I've been through).  Having her, plus my bible study group, plus Baylissa and a few ppl I've met through her community who are in WD is helping me.  Before that I was completely alone in going through this and it almost broke me.  I still have really hard moments, and the isolation of not having friends or family to help me through this, especially in my town, is very hard, but I appreciate every small bit of support i can get.

[ChessieCat]

  FLU SHOT follow up:

 

3 hours ago, NoMoreLexapro said:

 

Yesterday was better than Friday (the day I got my shot) and today is back to normal (well, WD normal) so I think all the bad stuff Friday was just a 24 hr, initial thing.

 

[NoMoreLexapro]

Hi All.  An update---

 

On Friday I will have been off lexapro 8 mths, off lithium over 7 mths, and haven't had one ativan since June 1 (took maybe 20 .5 mg ativan pills between Jan and June 1...never regularly).  Sometimes I wonder if I'm actually in the middle of 3 WDs.  I never felt anything on the lithium and the ativans always made me feel better but I don't need a benzo habit and so I use natural techniques for anxiety now (breathing, EFT, affirmations, etc.).  I can usually knock out the anxiety faster w/these techniques than the time it takes for the ativan to kick in anyway.

 

Now, almost 8 mths into WD I would say my WD baseline is about a 5/10.  Back in the summer and late spring, after I first went off the drug totally, I'd say it was a 3-4.  I haven't had to cancel any work appts (zoom) due to illness from WD in about 9 wks and I haven't had to go back to the ER due to sxs in about 10 wks. 

 

When I first heard about windows and waves I thought it described periods where a person felt normal and then felt bad.  With me, the windows/waves thing is a lot more symptom dependent.  For ex., one hour the nausea is better but the DR is worse.  I never really have any moment when I feel "normal"...its just that certain sxs are weaker while others are stronger.

 

That said, of the 70 sxs I've had there's no question some have gotten better (for now, at the present moment, anyway).   The dizziness isn't as bad in general, and neither is the anxiety.  When the DR isn't bad my mind is more stable and can comprehend more than in the acute period.  Some sxs recede for a few weeks only to return with a bad, debilitating attack randomly, which then takes several days-2-3 weeks to subside.  I can never predict anything.  There is nothing linear about this.  I can detect very little cause-and -effect.

 

The main sx problems currently are:

1.  Insomnia:  I still wake up 3-6x each night.  Waking up just 3x and getting back to sleep quickly after I wake up (I get up and use the bathroom when I wake up- if I don't do that I lay in bed awake for a longer pd of time) is a good night.  If I turn in around 930pm and get up in the 6am hr I can still get 5-6 hrs of sleep even w/3 wakeups in the middle.  For now, I'm fine w/that.  Strangely, amount of sleep often has no impact on how the nxt day goes.  I've had horrible nights when I barely slept at all and then had one of my better days after and vice versa.

2.  Exhaustion/fatigue:  this has generally improved since I first started this thread and I have had a couple days where I was actually able to take 3-4 brief (5 MIN) walks, but there are often days when one 5- min walk will result in me panting and out of breath.  Exhaustion/fatigue was also present even when I was on the lexapro.  This is a very slow climb.  My physical limits are still low.  Many times I'm also sniffly and just feel run down at the same time- like I'm catching a cold.  I've gotten tested for covid at least 20x this year b/c of these symptoms.

3.  DR/DP/Anhedonia:  again, this comes in waves.  A typical day includes 2 waves, each lasting 30 min-a few hrs.  When this happens often my head feels tight and I can barely read or cognate.  I've found that there are a few things that help bring me out of DR:  taking a walk, lying on my back with my legs up in the air against a wall, being outside, practicing mindfulness, playing my violin for a bit, or standing in grass/anything sensory. 

4.  Intrusive thoughts:  these vary widely depending on day and time  Some days they are barely there.  Other times they are stronger.  Keeping my mind busy and occupied is the thing that helps the most, as is messaging others or just doing mindfulness/breathing exercises. 

 

Every night I rate individual symptoms and my overall condition on a scale of 1-10.  I've never had a day that was an 8, 9, or 10.  The past few wks I've had about 1 day a week that was a 7.  I haven't had anything below a 4 for about a month, which is the first month I've been able to say that. 

 

Many physical symptoms have seemed to have let up for the time being:  body pain has been better since the early acute days, nausea is generally better (though can vary a lot), the dizziness has improved, and sometimes my vision issues aren't as bad.  Again- this could all change tomorrow, but these have been the trends in the last 4-6 wks.

 

Sitting outside on my patio in the sun is a real Godsend and helps my mood.  Other things that help:

1.  Meditation- I have to do this for at least 15 min each morning.  The whole concept of neuroplasticity is one I've dived into a lot.  If there's one thing that WD has taught me it is that there is an immense mind-body connection.  I cant control what sxs will arise, but how my mind reacts to these can make a huge impact.  That leads me to:

2.  Observing/Accepting/Letting Go/Breathing:  Baylissa- "this too shall pass".  The whole idea that I encountered this before and I survived before, so I can survive again.  Distracting my brain onto something funny, positive, or work-related.  Moving my body.  These things help.

3.  Prayer:  more than anything my faith in God and my prayer life has been my lifeline.

4.  Finding a support network:  I didn't have one when this all started and live alone.  I have a therapist I like a lot now (took me 3 tries- just keep at it- it's worth it).  I have a bible study that meets weekly that is great.  A few friends in WD are good supports too.  I wish I had more but I've got more than before and I'm so grateful for that.  WD is absolutely something that cannot be endured alone. WD has really humbled me and taught me about limits and the need of the support of others.

5.  Eating safe foods:  I never had food insensitivities b4 WD.  I have to be very careful, and even if I eat "safe" (e.g. healthy) food I may still get waves of nausea.  But the days of taco bell pig outs, whole pizzas, and spicy spicy spicy are gone.  Needs to be green and bland.  I was losing weight at an alarming rate but finally, a few weeks ago, it went back up and has now stabilized at an acceptable level.  I was really skin and bones (and am still lean) but I'll take the 5 pd improvement and stabilization.

6.  Finding a body balance: I have to listen to my body (absolutely cannot push it) but within limits...I can't let it push me into panic or anxiety or worry. 

7.  Yoga:  I have a gentle instructor who helps me w/simple things 15 3x a week.

8.  Chiropractor:  in WD I have so many more aches, pains, creaks, and pops.  I see a chiro every Thursday am and it helps.

 

 

The one thing that terrifies me more than anything is covid.  I'm still so weak that I'd die if I got it.  I'm able to isolate (live alone) and am working from home but finding the balance between isolation (not as much worry about covid) and mental sanity (can't be too isolated) is hard.  With forecasts for covid to explode these next 4-5 mths I am really praying for help. 

 

Some very brief moments of some days my mind almost feels back to normal.  I hold onto those moments.  I was actually able, for the first time in ages, to drive my car for a brief 4 min drive around my apartment parking lot.  I was a bit nauseated after but the feeling of joy and self-accomplishment that I got from that was off the charts and was an incredible boost to my self esteem. 

 

I'd feel a lot better about the future if there wasn't covid going on concurrently but all I can do is take things 1 min at a time and keep trusting God.  Someone once said that WD is like filling a bathtub up with water 1 drop at a time.  That is so true.  A friend I met on here who had almost the same lexapro experience is now 13 mths off and feels about 70% healed.  If I can go from being a 5/10 to a 7/10 in the next 4-5 mths I'll be very grateful...then the concept of seeing an end to this, seeing the end of the journey will be possible.   For now, I'm grateful for the small improvements that have happened and I keep at it, bit by bit.

 

 

[NoMoreLexapro]

36 weeks off lexapro...

 

November has been worse than October.  Hit a bad wave two weeks ago- the DR/DP/dizziness/confusion has been awful and there are periods of the day when cold/flu symptoms flare (feel hot, even though my temp stays at 98 or below), sometimes sniffly, tired, cough, nausea, fatigue. 

 

 

[ChessieCat]

Q:  Are then any symptoms which have improved?

[NoMoreLexapro]

Many, at least since the horrible acute period this summer.  For 4-5 mths it was absolutely awful- just barely holding on.  October was noticeably better--- my avg was prob 5/10, vs 3/10 this summer.  About a mth ago my best friend, my kitty Tommy, died.  That was a horrible blow.  I had him for 11 yrs and he was my soul mate.  I got a kitten a few days after he died.  That has been good (my intrusive thoughts are vastly reduced b/c the kitten is on my mind now) but also bad (requires a lot of energy and he tends to wail and cry a lot so that grates on me)...so there's some more stress w/that, plus covid is out of control where I'm at so that always lurks in the background.  I am terrified that if I got it I'd die or be gravely ill b/c my WD symptoms have weakened me so much. 

 

Plus, it is winter now so the decreased sunlight, colder temps...all of that too. 

[NoMoreLexapro]

An update:

 

Today I've been off lexapro for 40 weeks.  November had been hard but miraculously, towards the end, I had a run of about 10-11 days of 6s and 7s (out of 10- I've never had above a 7 since this all began) and I had my first ever two consecutive days of 7s!  I was so elated.  I actually began thinking, "is this what it feels like to come out of WD?".  But no- December has been awful.  The past 2 weeks I've had one of my worst waves yet...and it has been the longest I've gone without a 6 or 7.  I even had my first 3 in months.  The symptoms are all cold/flu in nature: awful fatigue, body pain, congestion, tiredness, feeling too hot or cold, bad insomnia, low energy, waves of bad DR, constantly thirsty, waves of nausea, waves of dizziness.  Have had 2 covid tests- both negative. 

 

I'm so tired of being sick.  It's really wearing on me.  I'm so tired of suffering like this. 

 

 

[NoMoreLexapro]

I think I remember reading somewhere at some point that it is common to have a bad wave at the 8-10 month mark.  Or maybe I was wrong and I'm making that up?  I can't remember...

[Gridley]

15 minutes ago, NoMoreLexapro said:

I think I remember reading somewhere at some point that it is common to have a bad wave at the 8-10 month mark.  Or maybe I was wrong and I'm making that up?  I can't remember...

An earlier version of Brassmonkey's essay, "It doesn't end at zero," spoke about a bad wave around the 10-month mark.  The current version is less specific and talks about a bad wave occurring "some months after going off."

[NoMoreLexapro]

Ok so I wasn't just imagining it.  Thanks for the clarification.

 

This wave is brutal.  I just want it to be over so badly...

[NoMoreLexapro]

At a little over 40 weeks off lexapro, I decided to take stock of where my side effects are at this point.  Compared to the worst/acute, I've put them into 6 categories:

 

Completely gone/barely there:

1.  suicidal ideation

2.  homicidal ideation

3.  panic attacks

4.  feeling like sand is moving in my head when I turn it

5.  racy brain with fast jumbled thoughts

6.  feeling like top of head is on fire/sizzly

7.  shooting front chest pain

8.  stomach pain

9.  intestinal pain

10.  bladder pain

11.  genitalia pain

12.  night sweats

13.  trembling

14.  hot/swollen hands and feet, w/color changes

15.  bloody stools

16.  red eyes

17.  bloody eyes

18.  vertigo attacks

19.  head shocks/brain zaps

20.  dysphagia

21.  jelly-like legs/arms/body

 

Much improved:

1.  anxiety spikes

2.  mood swings

3.  agoraphobia

4.  irritability/anger/impatience

5.  weight loss

6.  headaches

7.  shivering chills

8.  constant urination

9.  ataxia

10.  heavy limbs

11.  lack of coordination

12.  muscle tremor

13.  muscle shocks/kicks

14.  tinnitus

15.  head/brain tightness/pressure

16.  dyspepsia

17.  lightheadedness

18.  coughing up blood

 

Slightly improved:

1.  brain fog/confusion

2.  DR

3.  DP

4.  short-term memory loss

5.  speaking problems

6.  obsessive music in mind

7.  anhedonia

8.  loss of libido

9.  depression

10.  breathing problems

11.  dizziness

12.  hands/arms falling sleep/tingling

13.  food insensitivities

14.  ability to exercise

 

No change:

1.  exhaustion

2.  change in appetite

3.  POTs-like heart rate changes when changing body position

4.  upper back pain

5.  lower back pain

6.  vision problems

7.  nausea

 

Slightly worse in general:

1.  chest suction/pain sensation

2.  mid back pain

 

As bad as it ever was or worse than acute:

1.  congestion

2.  insomnia

3.  dehydration/constantly thirsty

4.  body temperature disregulation (feeling too hot or too cold)

5.  runny nose

6.  creaking joints

[NoMoreLexapro]

December has been a very rough month but I recently started doing DNRS (dynamic neural retraining system).  It isn't specifically for WD but after only a few days I feel like it is helping.  I'm excited to see where it takes me...

[Lostinwonderland]

Hey nomorelexapro I sent you a PM

[NoMoreLexapro]

Sorry it took me a little longer to respond but sent you a message

[NoMoreLexapro]

Update:

 

Today marks 1 year off lexapro, after 66 days of hell on it.  I never could have guessed then what I would go through in the past year.  It is without question the hardest thing I've ever endured.

 

One year later I'm much improved.  I rate my sxs each night and on my best days I'm an 8/10.  There have only been about 4 of those, and they all have happened in the past 60 days or so.  I'd say my average is a 6-7/10.  As recently as late December my avg was 5/10.  Starting DNRS (retrainingthebrain.com) the last week in December was a game changer for me.  Since then things have really improved and I've seen many, many sxs either leave or be reduced significantly.  Many things that would have been unimaginable even 4 mths ago are now possible:  I'm driving a bit again, my energy/physical strength has gone way up (can now do 30 min walks and have 30 min workouts via zoom w/a yoga instructor 3x a wk), and my emotional state is much more positive.

 

There are some sxs that remain.  I still struggle with dizziness, anxiety spikes, vision issues, brain fog, DR, and some occasional physical things, though the physical things are more fleeting now.  Sleep remains an issue:  I still wake up 2-3x throughout the night, but cumulatively I'm getting about 5.5-7 hrs of sleep, which is better than things were for most of 2020.  I miss deep, REM-filled, uninterrupted sleep the most.

 

My food sensitivities are gone now, thanks to DNRS, and I'm back to eating pretty much anything I want, though I temper than with more healthy food now than I ever did in the past.  That's just smart in general.

 

I wondered in 2020 which would recover first: the physical issues or the mental/neurological.  While all have improved, I feel physically stronger/better recovered than the other.  But I now at least sense an end to all of this at some point...a light at the end of the tunnel.

 

I'm hoping that everything completely resolves in the next 6 mths.  I could see a scenario in which that could happen, but I learned long ago not to pine away for such things and just let nature do its job.

 

Again, DNRS has been the biggest godsend to me and I can't thank my therapist enough for telling me about it.  I take a daily multivitamin, omega 3, magnesium, zinc, vitamin d, vitamin c, and glutathione every day.  I also credit EFT tapping, my church small groups, my therapist, and the insight timer app/mindfulness/meditation/CBT techniques as being helpful.  Playing music 30 min a day is really good for my brain too- it has a way of resetting things and giving my mind clarity and focus like nothing else I do.

 

There's no way in hell I'll ever go near a psychotropic drug ever again.  I still have a ways to go in my recovery...I'm far from saying I'm healed...but I've also come very far from the days last year when I was going to the ER constantly and I could barely move.  The body's ability to self-heal is amazing to me.

 

One final comment:  I can't recommend strongly enough Norman Doidge's books on neuroplasticity.  They've been fascinating reads and inspire me every day.

 

I'll continue to post occasional updates to this thread.  I hope to be able to say someday, ideally in this calendar year, that I'm fully healed and give a testimonial that speaks to that.  For now, I'm grateful for what has improved and appreciate that I can now basically meet all of my work commitments (albeit remotely from home), am now fully vaccinated for covid, and can say I'm a lot better. 

 

This journey is all about celebrating the small wins.  To all of you on it with me...look for and hold onto those wins.  They keep us going.

[Crochet]

Thanks for providing the update. I'm happy for you that you are making progress and I'm so sorry for what you've been through!

[NoMoreLexapro]

@Crochetthanks so much!!!

[BooBoo19]

Hello @NoMoreLexapro

 

That is inspiring, I am similar to you although have been on other medication prior but was on lexapro for a short period if time and was told to 'ride through the hump' of extreme side effects. I did as I was told but things got worse and I then stopped taking them almost CT.  That was 6 weeks ago, my anxiety is still very high and debilitating at times,  have insomnia (never had that before) low appetite and no joy in most things.  My Gp and nurse has stated that I must have. strong character as everybody else goes back on the drugs as they cannot cope with the side effects, I totally understand that.  My body is in constant fight or flight mode but you have given me inspiration.  Well done and keep posting for people like me to know id will and does get better.

[NoMoreLexapro]

@BooBoo19I hear you. When things were unbearable last year I desperately needed to hear stories of improvement and healing to give me hope that things would get better.  For awhile I didn’t know if I would survive.  

[DinaDina]

@NoMoreLexaproHi! I just want to know how you are doing now.

[NoMoreLexapro]

@DinaDina So nice of you to reach out!  I'm much better...probably about 80% healed!  retrainingthebrain.com is what helped bring me out of WD.  It truly has been a lifesaver... Hope you are doing well.

[Greatful]

@NoMoreLexapro  I  am encouraged by your story.  It gives hope to us that are starting out on our journey.  I hope to have as much courage and strength as you.  

Can you tell me a little more about DNRS.

 

[NoMoreLexapro]

39 minutes ago, Greatful said:

@NoMoreLexapro  I  am encouraged by your story.  It gives hope to us that are starting out on our journey.  I hope to have as much courage and strength as you.  

Can you tell me a little more about DNRS.

 

@GreatfulIt was originally suggested to me by my therapist back in December.  She credits it for helping her recover from debilitating Lyme disease.  Originally I was skeptical but she said, "if it only helps you 25%, will it have been worth it?".  I had to admit that yes was my answer.  Well, I took the plunge and it has been a lifesaver.  The best part is that there are no possible negative side effects, which is far more than I could say for some of the other things I tried in WD (acupuncture, supplements, etc.).  There's actually a facebook group of ppl who are in WD who are doing the DNRS program right now:  https://www.facebook.com/groups/559451355225776/

is the link to it.  The title is "DNRS SUPPORT AND ENCOURAGEMENT".  I have several friends who are doing DNRS right now who've been in protracted WD for years and are starting to see some positive shifts.  I'm elated for them. 

 

The website, retrainingthebrain.com, is really thorough so checking it out is probably going to give you more info at a glance than what I can type out here, but I encourage you to join the fb group and/or check our Annie Hopper's book "Wired for Healing".  Annie founded the DNRS program.  I read the book before starting the system- you may find that to be of benefit too. 

 

If I hadn't started DNRS I have no doubt I would've gone into protracted WD.   As it stands, DNRS saved my career, my life, and my future.  As recently as December I couldn't prepare my own food, couldn't drive, and couldn't walk more than 5 minutes or so.  Now I can drive again, go to work, cook (and eat anything I want again), and I work out at the gym and take 30-35 min brisk walks every day.  It was truly a Godsend.

[Fromthenetherlands]

Hi @NoMoreLexapro,

Could you please inform me about the recovery of your cognitive problems? How long did it last? How did it get better?

[NoMoreLexapro]

6 hours ago, Fromthenetherlands said:

Hi @NoMoreLexapro,

Could you please inform me about the recovery of your cognitive problems? How long did it last? How did it get better?

My cognitive problems were very severe and were very present all the way from ending lexapro to the beginning of my journey starting retrainingthebrain.com.  retrainingthebrain.com was the one thing that has helped me the most with these and I'm very, very grateful for that.

 

I still have a few moments each day when I feel like I've lost 10-15 IQ points and have some memory issues and sometimes mild brain fog/concentration issues but they are vastly improved due to retrainingthebrain.com

[Greatful]

@NoMoreLexapro  Thanks for getting back to me so quickly.  Did you take a program for your DNRS?   I googled it and I found a program that offers dvd's or a online class  The Dynamic Neural Retraining Systems.  They did recommend you get the book by Annie Hopper

 

[NoMoreLexapro]

12 minutes ago, Greatful said:

@NoMoreLexapro  Thanks for getting back to me so quickly.  Did you take a program for your DNRS?   I googled it and I found a program that offers dvd's or a online class  The Dynamic Neural Retraining Systems.  They did recommend you get the book by Annie Hopper

 

I ordered the DVDs and workbook and transcript.  I did read Annie's book prior to starting DNRS but that's not necessary.  The content of Annie's book is largely covered in some of the DVDs so you can avoid that step if you just want to dive in...

[Greatful]

@NoMoreLexapro  So you went through this program?  There is a lot of DVD's.  Were they hard to follow when in WD?  Sometimes I have hard time keeping up with conversations and processing what people are saying.  Then of course to being  patience to sit that long.  Did you take your time? Do you work on things as you go along.  Sorry so many questions.   I am one who is worried that I will not be able to understand or do the lessons right.  Low confidence😰

[NoMoreLexapro]

@Greatfulyes- when I started the program my DR/DP/brain fog and anhedonia were so bad, not to mention my fatigue, that I did have a hard time following.  I had to do a lot of note taking and re-reading of material to get it and some of the more technical stuff went totally over my head (and probably still would).  That said, it didn't prevent me from being able to implement the program and I'm really glad that I did.   It took me about a week to get through all of the DVDs.

[Greatful]

@NoMoreLexapro  Thanks so much😊

[DinaDina]

On 7/18/2021 at 3:23 AM, NoMoreLexapro said:

So nice of you to reach out!  I'm much better...probably about 80% healed!  retrainingthebrain.com is what helped bring me out of WD.  It truly has been a lifesaver... Hope you are doing well.

 

@NoMoreLexaprothank you for your reply! Your story makes me hopeful. I have many bladder issues now. I read you had them too. Could you describe how they was going away in your case?

[NoMoreLexapro]

@DinaDina My bladder issues (and all of my side effects/symptoms) got much better after I started the DNRS system in late December.  retrainingthebrain.com is the link.  It frankly saved my life.  Hope that helps!