☼ clearday: Off Prozac 12 yrs, off Lexapro 1 yr

[LexAnger]

Very sorry clear day for the bad wave! I'm glad it's just discomfort not pain.

Like you said, it will pass and just a phase of the windows and waves pattern. I appreciate your altitude, faith, and observation as those are what keep me pushing through each day as well.

 

You have been strong, consistent and determined in getting out of the woods also taking best care of yourself as much as possible, and I have faith in you to eventually win the battle and fully recover.

 

I'm doing the same only that I still cutting doses and will continue doing so for many more years.

 

I'm curious if you ever had bad reaction to other medications (such as pain killer, antibiotics etc) before and/or after last dose the lex?

Hope this wave is short and soon you will be in a nice long window!

 

Lex

[clearday]

UPDATE.

 

It is almost 18 months since I cold turkeyed off Lexapro.

 

I had one of my worst waves ever last week, it was intense and lasted for about 7 days. Not long at all, considering my waves usually last a month. The symptoms were intense and beating me up 24/7 during the worst of it. It took its toll, I was getting weary of the fight and nearing despair again.

 

And now I am in one of my best windows so far, lasting about six days now.

 

Symptoms lessening and improving with each window as the months go by. 

 

It is true what they say, "For countless times during recovery, you will be convinced that no improvement is happening, but healing is definitely happening".

 

This is a long, confusing, difficult ordeal. But I am more hopeful now than ever. 

 

The brain fog, apathy, anhedonia, are gone now for a few months. I have no unusual depression or anxiety. Fully functional, enjoying my days.

 

Psychologically, I feel normal. My symptoms for the past couple months have mostly been physical - the head noise.

 

And while that can be horrible - it is like intense paresthesia of the brain, and the body gets affected too - the head noise is definitely improving.

 

When my next wave hits, it will be tough, but I have this window and all my other windows to remind me that I am healing.

 

I want to thank each of you here at SA for providing me with the support and knowledge to help me fight my way out of this ridiculous hell.

[pug]

This is huge for those of us suffering and I can't thank you enough for taking the time to update your thread. I am copying your post and adding it to my file of inspirational messages about recovery.

 

Thank you so much!

[LexAnger]

This is so great! Thank you very much for the inspiring update!

I'm so very happy for you Clearday!

 

I'm looking forward to hearing more of your greater news!

Enjoy the window and live fullest of it!

 

Lex

[clearday]

UPDATE -

 

So, during July I had two difficult week-long waves, with some renewed symptoms that I didn't have for months.

 

But they were followed by some of the best windows so far.

 

The first two weeks of August have been mostly a window. Symptoms reduced and morphing.

 

During this window, I have some symptoms flare up for an hour or so on some days, but then back to the window.

 

During the last eight months, my head noise would always be horrible at bedtime, and if I woke up during the night, the head noise was ALWAYS raging. EVERY night for over eight months.  

 

During the last two weeks, for the first time, I have woken up during the night, and the head noise was much reduced. This has happened now for quite a few nights. So this is very promising.

 

The overall trend over time is that of unmistakable healing and progress. 

 

What those have recovered tell us has turned out to be true for me. That, regardless of a return of bad waves - even "worsening" symptoms - healing is happening, and I have always kept that in mind during difficult waves. I have always reminded myself that "Countless times during recovery, you will be convinced that no improvement is happening, yet healing is happening." That mantra has absolutely allowed me to get through this without despairing upon the return of symptoms. 

 

For me, this recovery from SSRI usage is not a slow, gradual improvement of symptoms; it is windows and waves. My experience so far has shown that a return of bad symptoms does not mean we are not getting better, it just confirms what we have been told by those who have recovered - that healing happens with windows and waves.

[apace41]

Thanks, Clearday.

 

That is reassuring to hear.

 

Best,

 

Andy

[pug]

Thank you beyond words for this message of hope!!! I am going to add it to my journal of positive messages and recovery/success stories.

 

I am so happy for you!

[LexAnger]

Thanks so much for the very encouraging and reassuring update!

Very happy for you.

[When91]

what these drugs cause the body is incredible. I'm one year away and completely unstructured life. a light race for me today is impossible, with only 24 years old.

[pug]

Clearday how are you doing?

[Freeby60]

Hello Clearday~ thought I would stop by and see how you are doing. It is incredibly helpful to read everyone's story! I have just started tapering PPI and until I am done with those I will not start tapering ADs.

 

I hope you are doing well and that the head ringing is going away.

 

Thank you, again, for stopping by my introduction and giving me a warm welcome!

[DLB]

Great update Clear! Nice to see you healing ,especially from a CT. I've been in a wave for at least a month, have you ever had such a long wave? Thanks for the inspiration!

[clearday]

I've been in a wave for at least a month, have you ever had such a long wave? 

 

Yes, June was a month-long wave for me. Thought it would never end.

 

But it did end, and July was a better month, with two windows seven days each. Although I had two pretty bad week-long waves in July.

 

August is turning out to be overall a good month.

 

Seems that lately, during August, each day has its own windows and waves.

 

Hard to figure out this stuff. It just does what it wants.

 

I have to remind myself that nobody knows what exactly is damaged, and what exactly is healing, and how it is all happening.

 

So no one, especially not our doctors, can tell us what to expect and when to expect it. 

 

All we can do is read other stories of protracted withdrawal, see where they are similar to ours, and see how they are different. Then in the end, each of our stories is unique, with its own timetable of windows, waves, and healing.

 

I made this calendar showing how 2015 has been for me so far - waves of symptoms, with windows shown in blue; click on it to enlarge:

[AliG]

 Clearday, 

 

 I'm 15 months off, and I feel like I'm cycling through "windows & waves" more frequently.   Is that how you are  experiencing symptoms, at the moment?  It sounded like it .  You seem very much improved. I look forward to hearing  more of your recovery / healing.     Ali.  

[pug]

Clearday how is the rest of August treating you?

[clearday]

UPDATE.

 

The second half of August and first week of September has been a difficult wave.

 

Symptoms have morphed. The "brain shuddering/bubbling" at night from six months ago has returned. It happens briefly while drifting off to sleep, but it is alarming.

 

Also, "wavy brain" and slight dizziness, slight nausea upon waking, nausea from the dizziness I suppose. That's new. It's as if I was on a rollercoaster while sleeping, I wake up feeling that way. 

 

Increased head pressure over the entire brain and ears. During day also.

 

Head noise usually present. Feeling a little beat-up upon waking. Sleeping pretty good overall.

 

During worst times I get SI due to loss of hope and just tiring of this long-term torture.

 

But I do get brief windows during this wave that get me mentally back on track. It's all part of this confusing, counter-intuitive healing process.

 

I had a great window a few days ago for the afternoon. All symptoms gone, felt 100% like my old self. It was like a dream, but it was real, and I experienced my old self, buried under this long term torture. I knew it was a tease, but I realized I will feel more like that a year or so from now, after more healing. Right? 

 

Sometimes I forget that I healed from three years of protracted Prozac withdrawal, ten years ago. Those symptoms were disabling - daily severe fatigue, sensitivity to light - and they are all gone. But this Lexapro withdrawal, with this head noise, is more of a torture. I suppose since I healed from the Prozac, I will heal from the Lexapro. (I didn't know back then that Prozac caused the symptoms; thought I had CFS or something else. I would have never gone back on an SSRI if my doctor was smart enough to spot a clear case of protracted SSRI WD).

 

Looking forward to my next lengthy window, it will come.

 

Seems that the morphing of symptoms is due to the brain healing different neural networks during each wave.

 

The different neural networks are linked to different systems. So my waves over the last year and a half have included one insomnia wave, brain fog waves, chest tightness waves, brain shuddering waves, depending on which nerves are being repaired. That is just my guess as to what is going on. Seems that nighttime is always the worst. That is the time that much body repair work is done anyway, so the organism can function best during daytime to survive. Daytime I am always much better than during the night. Leave most of the repair work for night. It just seems that way.

 

I have had much healing. The body and scalp numbness is long gone and has not come back. Bruit in ears has not come back. Head noise overall reduced somewhat. Brain fog gone for a few months. No anxiety or depression present. 

 

But always the head noise as background, increasing during waves. Lessening during windows. Sometimes the head noise is gone for brief periods up to fifteen minutes. 

 

The morphing of symptoms - when new ones arrive this far into recovery - is always alarming. Just when you think things will only get better from here, something new shows up and it seems like "things are getting worse". But those who have recovered tell stories of morphing and worsenings during this time. They have recovered. So I also should recover.  

 

I ran three miles today and felt great. Today wasn't so bad.

 

Good luck to all of you. We are the ones going through our own personal hell. With no doctors to help us, or even just to validate our plight. How ridiculous, to be put in such a position in this modern day.

[melanie]

Hello Clearday,

 

You give me so much hope. I know I will never arrive at the point where you are now. My disease won't allow me. But still, there is light at the end of the tunnel. And your post is that light.

 

Hugs, Melanie

[DLB]

Good job clear. Three miles? Wow you are stronger than me that's for sure, this battle sucked the life from me physically and I can't wait to get my strength back, I used to lift every day and now I have trouble picking my kids up! They wonder why I could pick em up and toss em around so easily 2 years ago and now I have trouble just lifting them and I am no small guy 6' 205 lbs and I feel like a weakling. So glad you can do physical things like that. It's odd that night is your worst, for me it is mid to late morning and I look forward to evening/ night when I can rest( although my sleep is still pretty shot). Keep healing Clear...

[AliG]

 Clearday,

 

Thankyou  for  your words of encouragement, on my thread .

 

 

 

I , so agree. "how ridiculous, to be put in such a position in this modern day ."

 

People will look back on this in  " however many years" & it will be the equivalent of "bloodletting", as used in medicine, years ago.

 

I can see you've had much healing , but you have a little way to go.  I have no doubt that you will make it.

 

Stay positive. I know you are.

 

Ali.

[clearday]

UPDATE.

 

The past two weeks have been a difficult wave of new symptoms, at night having wavy dizziness in the brain, head pressure, and waking up with headache, as if hungover from whatever was going on in the brain at night. Feeling beat up with head noise in the day too. 

 

But today I am having the best window so far in months. I feel 100% normal all day. Hard to believe I can feel so good, after all I have been through.

 

I am reintroduced to my old self, all intact under months of horrible symptoms. Will I actually heal from this? Today, the answer seems like a "yes".

 

During recent waves, it seems I will never get better, and that I am stuck with these symptoms for years. I despair. 

 

Yet today everything is just great. I store up strength and hope to get me through the waves to come.

 

It's so easy to lose hope during waves. Even this far out, 19 months since last dose of Lexapro.

 

I'm becoming convinced that during the bad waves, it is major healing that is happening. The worse the wave, the better the window that follows. 

 

My brain has suffered severe damage due to exposure to Lexapro, of that there is no doubt. How much recovery I achieve is an open question. Will there be lingering, long term damage, and to what extent? At this point, It is unknown. But if today is an indicator of how I will feel after this is over, then I will be in good shape. Still much healing to do.

 

So very strange, this process of recovery.

 

We all need to go from point A (beginning of WD) to point B (recovery).

 

The only thing between A and B is Time and Suffering.

 

The question is, do we have the strength to go from A to B. Is it humanly possible to get through the suffering?  

 

Can we overcome the loss of hope during this Time. Can we keep our eye on the light at the end of the tunnel, during our darkest times?

 

Today I see that light. It is very beautiful. I am filled with renewed hope. I see people going about their day, kids riding by on bicycles, screaming with joy, and for once I am not jealous of their normalcy, I am one of them again, for today.

 

I brace myself for what is to come. I have absolutely no idea what the next days will bring. I am at the whims of this mysterious, ruthlessly brutal recovery process.

 

My brain cares not how I suffer. It follows ancient patterns of healing that it has evolved to follow over millions of years. Our brains have evolved to heal from all sorts of environmental toxins and injury over the millennia.   

 

The brain knows what it must do to get back to normal. It's up to me to have faith in the process, buckle the seatbelt, and hold on for dear life.

[Horns85]

Great to hear, Clearday!

[Pugknows]

Wonderful update, Clearday. I am overjoyed and cheering for you.

 

Pug

[OffEFFexor]

Clearday, I am 18 months out, and I have been experiencing some similar patterns of symptom waves and windows as you have described in your last two posts.  There are some recent parallel segments of our two paths.  Much of what you say about healing, about waves being periods of repair, about time + pain are ideas which I strongly share. 

 

I had a day like that about a week and a half ago.  I felt perfect. I am sure those days will become more frequent.   I am so glad you are having such a clear window today, and I hope you have many more, soon.

[clearday]

Thank you for stopping by, Horns, Pugknows, and OffEffexor -

 

Best wishes to each of you for continued recovery -

[melanie]

Hold on Clearday, your brain is healing, I know it.

 

Such a beautiful description of your window on that day when you could enjoy all the life going on around you. I haven't felt that for a long long time. I am also jealous of ppl enjoying life. I so much relate to this feeling of envy, of longing for normalcy. Maybe one day we will too enjoy life...

 

Am currently on 1,25 mg Lexapro, as suggested by pdoc. Gosh it's so tough. Wave after wave...

 

Just to enjoy the present moment and to accept the suffering life brings. To believe that healing is taking place. That is all I want.

 

Hugs,

Mel

[clearday]

Update.

 

The last month saw roughly two weeks of a wave followed by about two weeks of relief.

 

The wave had constant head noise and daily fatigue, some brain fog. I have not had much fatigue during my protracted WD, so this was a surprise.

 

Luckily the fatigue has gone away. The past couple weeks have been tolerable with some enjoyment.

 

It has been 20 months since my last dose of Lexapro. I had gone on Lexapro for dysthymia (mild daily depression) six years ago, and Lexapro was effective at making the dysthymia go away. 

 

I have not had any depression or anxiety to speak of for the last 20 months of WD. But lately, for a few weeks, the dysthymia has crept back in.

 

In a way, it is good to know that my old self is returning, intact, dysthymia and all. So now I have gone full circle, too bad I have to deal with this bad protracted Lexapro WD on top of my dysthymia.

 

And now, for the first time in my life, it looks like I have mild shingles. It is two small red lesions on my chest, near a rib. The rib hurts from the back near my spine all the way around to the lesion in the front. Very mild as far as shingles goes, if that's what it is.  The doctor who looked at it said, "Hmm...shingles?" but since it was only two small lesions, didn't push the diagnosis.

 

I've read on other blogs and here that people get shingles during WD. I'm surprised it's waited this long to surface, given the severe stress I've been enduring due to WD symptoms for so many months now.

 

I had two WD waves of chest tightness during the last year. So it makes sense that shingles could be triggered in the chest due to all that's been going on during WD.

 

The "shingles" is subsiding for now.

 

Overall, I am continuing to heal, ever so slowly.

[LexAnger]

Hi Clear,

 

I'm so happy you are healing even with random new symptoms faring up here and there!

I'm very sorry about the shingles. Even its subsiding, I suggest you to try some supplement to boast your immune. I have been taking OPC 3 ( you can find it on amazon and all info online) all these time tapering. My white blood count is below normal range for the past 2 year ever since I started taper. OPC 3 helped a lot though.

 

Lex

[starburst]

Hi Clearday. It is interesting to me that your withdrawal didn't start till months after ceasing Lexapro. I am learning that everyone is different and not all have the same symptoms. I am glad to hear that you have had some good windows. I like your thought that a bad wave is followed by a better window. I really can't think clearly at the moment as to whether or not I have had any protracted withdrawal symptoms during my seven years on lexapro. I made some pretty big cuts along the way. For me it seems to have become more difficult since I cut from 10mg to 5mg. I sometimes feel when I read people's stories that I am standing on top of a high cliff waiting to do a bungee jump but not really wanting to do it! I know I will have to jump off eventually but I'm terrified of the WD. 

I wish you all the best as you soldier on in your journey x

[clearday]

Hi Clearday. It is interesting to me that your withdrawal didn't start till months after ceasing Lexapro. I am learning that everyone is different and not all have the same symptoms. 

 

Thank you for your post.

 

Yes, everyone suffers their own version of protracted withdrawal with symptoms picked from the "Wheel of Misfortune".

 

Yet overall, the more stories you read, a common pattern emerges, clearly showing an overall typical pattern of symptoms associated with SSRI WD.

 

Many people have side effects while on the medication, and then get bad withdrawal effects in the immediate weeks and months following discontinuance.

 

Others, like me, suffer minimal side effects while on the drug, only to be hit months later "out of the blue" with severe symptoms. They use terms like "out of nowhere, all hell broke loose". I read a few stories of people coming off Lexapro like me, who had their WD symptoms hit around 6 - 8 months off. One person off Effexor was hit very hard 13 months off, entire body pins and needles with terrible akathisia.

 

Years ago, I had a similar delayed onset of SSRI WD after I stopped Prozac. I was fine for four months after cold turkey. Then one night, all hell broke loose, and I was sick for a few years. So I guess my particular neurochemistry is prone to delayed withdrawal. The problem with delayed withdrawal is that cause and effect is lost; it seems the symptoms come out of nowhere, and doctors assume it is "anxiety returning". So they push more drugs. Very tragic. 

[clearday]

UPDATE.

 

I had about a month of reduced symptoms during October/early November.

 

It was good to have that kind of relief, for a few weeks.

 

As usual, during these extended windows, it seems that the worst is over, and things will only get better.

 

But also as usual, a wave crept up on me last week, and now I am still in this wave.

 

This wave is characterized by constant head ringing, but higher in pitch, and an unusual type of anxious feeling. Some akathisia (RLS) during bedtime.

 

The ringing is due to the typical, widely reported Lexapro damage to the nerves/tissues in and around my scalp and base of the skull. I will often get tightness, slight pain, and itching in those tissues. 

 

What they say, that symptoms "morph", and that no wave is ever the same, is true for me. So that means healing is happening.

 

It is just counter-intuitive, since waves return, and it seems like it this protracted WD will never end. 

 

But of course, many people telling us that they got better after 3 -4 years, and the only thing we must do is "hang in there, it gets better".

 

Easier said than done, for sure.

 

I am 21 months since last dose.

 

Still hanging in there, which is all we can do. Still have reasonable hope for continued healing, and looking forward to more progress and more lengthy windows.

[DaddyCee]

Great update. I too have recently suffered a 3 day wave where my anxiety was through the roof and I had severe unhelpful thoughts.

 

I had a massage just before the wave struck and the lady used a new "Citrus" based wax, so I'm not sure if that had any effect. Or may be it was just coincidence. Time will tell no doubt.

 

Keep your chin up and know that you will definitely heal in time.

 

Namaste. DC.

[clearday]

UPDATE.

 

Wow, another month goes by in protracted Lexapro WD. Time flies when you're having fun  .

 

The past month was a nasty wave, loud head noise 24/7, sometimes four sounds at once: ringing, buzzing, static, humming, bumping. Both ears at once, back and forth from ear to ear, all sorts of chaos. Laying down for bed was often quite horrific. Sleep becoming lighter and more broken, waking up in the middle of the night and in the morning to the same loud noises very fun indeed. Amazed that I haven't cracked. The human mind is impressive to be able to withstand this prolonged torture and still be largely intact.

 

The worst days, perhaps five or six days per month, I have lots of SI. It's just a natural byproduct of seemingly nonstop suffering. The SI is more of just a nuisance thought pattern brought about by suffering. I'm never even close to acting on it. The rest of the days, as long as it is tolerable, no SI at all. I also am tempted to go back to drinking alcohol during the bad stretches. But I know that would probably send my nervous system and my life into a tailspin. I haven't had a drink in over seven years. I want to recover from this SSRI damage, and for me, alcohol is most likely a bad choice for the short and long term. 

 

It is just the tissues in and around my ear canals, the back of my head, rear of my neck, and scalp that are causing this head noise disturbance. It is some type of paresthesia and muscle tension in these tissues that initiate the noises. All due to withdrawal of Lexapro. Probably some type of dystonia. Mechanism probably similar to another person going through this SSRI WD who had their tongue contract in their mouth, finding it painful and hard to swallow. 

 

This muscle tension and tightness also radiates down my upper chest and rib cage. It used to cause significant tightness in my chest and difficulty catching a breath. That went away. It occasionally triggers mild shingles in the chest area as my nerves there struggle to heal.

 

Finally in a window now for a few days. The affected tissues around my head and upper body get itchy, tight, and achy as they heal. Very similar to a sunburn healing when it gets itchy.

 

The noise over time often becoming higher in pitch. I see this as progress. Morphing of symptoms continue. Some symptoms I had long ago resurface for short time but then quickly fade away (ex. dysthymia; also certain sounds like bumping and "crickets" used to be prevalent, but rare now). 

 

I eat well, run three miles two or three times per week, plenty of energy to do that. I have no depression or anxiety overall. I function as best I can on my good days. I have many good days, but the bad days are a real struggle. Especially when I didn't sleep well the night before. Some days the noise wears me down. But I can function very well socially and intellectually overall. 

 

Very hopeful for recovery. I see and feel progress; you just know it is happening. Very glad I never reinstated despite moments of despair and desperation. (I discovered I was in WD seven months after last dose, so it was already too late for me to reinstate).  I accept that this process will continue at least another year. This recovery has the characteristic of often seeming to get worse before it gets better. SSRI recovery is often described as slow and painful, that applies to me also. 

[LexAnger]

Oh my god, I'm so terribly sorry. It all sounds horrible and scary! What these poison especially lexapro dose to human body makes me speechless and very angry!

 

I'm glad you are now in a window! You are so strong clear, I admire your strong soul enduring all these in silence. you deserve a long nice window. Hope these episodes of waves get lower and shorter and over soon.

 

Hugs,

Lex

[clearday]

UPDATE -

 

This past month was much better than the prior month, regarding my withdrawal symptoms from Lexapro.

 

It's almost two years since last dose.

 

This past month, I had no nasty "worsenings" like I had most months during the last half of 2015.

 

The head noise/head tightness has lessened in intensity overall, and that makes life a lot more tolerable.

 

I still have it 24/7, and it is still very annoying, but whenever it shows signs of weakening, that's encouraging.

 

There is still an overall slight tightness in the soft tissues of my head and upper thorax, typical of Lexapro WD.

 

My sleep had been very good for an entire year up until December, but recently my sleep is a little broken during the night -

 

So I am in an "insomnia" wave of sorts.

 

I'm prepared for any "worsenings" that may come my way in the coming year. That is part of how healing takes place.

 

But right now, things are looking up. I'm very happy to be almost two years away from Lexapro. 

[AmyK]

Good to hear! I am so sorry that you have to endure all this suffering. It's so unfair. Sending lots of healing thoughts and well wishes for this new year.

[AliG]

Clearday.  You never complain !     I do admire your spirit.  Re:  your sleep . What does " broken" entail?   You do have a very positive attitude. Where does that come from ?  You are healing. That is obvious. Inspiring.

Wishing you continued recovery.

Ali