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LexLuthor

LexLuthor: Lexapro - Fatigue / Slight Dizziness still; Months after final dose

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LexLuthor

Hello all!
I found your forum and figured I should ask for thoughts regarding my Lexapro withdrawal experience. I’ll post a brief overview paragraph, but if you have time or want to know more, I tried to be as detailed as possible describing my symptoms to see if they sound familiar to anyone here. 

 

Short explanation:

I took Lexapro for around 2 years, maybe a bit longer. The dose was 10mg, but it’s possible it was a little higher for a short while. I lowered the dose to 5mg at some point in 2014 and was on that dose for a year. I then spent the bulk of a year tapering from 5mg to 0mg. The last dose I took was so small that it was a tiny piece of powder on my finger, which is what I had gotten it down to over time. 

I am on here because I have been off of the medicine completely for almost four months and still have some odd slight-dizzy/floating feelings sometimes, which typically aren’t very strong or long lasting, but I also have fatigue most days. I sleep very well and get 7-8 hours a night, but feel the need to lay down for a few minutes several times a day. I never had these issues until I started messing with my Lexapro doses. 

Thats the short story, but I can get more in-depth. 

 

Fatigue details:

The fatigue used to be so bad a few months ago that I could easily fall asleep within 3 minutes; I would often take a few minute break at work and immediately fall asleep in my car and set a short 6 minute timer and wake up and feel a lot better. I would do that a few times a day especially after work. Now days I don’t instantly fall asleep, but resting my eyes for a few minutes helps. I take a 20 min nap at lunch and a 20 min nap after work and for both of these I fall asleep and jolt awake when the alarm goes off, but feel a lot better.

When it happens, I can often feel the tiredness growing in a short period of time, often within an hour or even 15 minutes. The tiredness is usually just to the level of being annoying, but sometimes it becomes so strong that I literally just have to close my eyes at my office desk for awhile. When it’s really bad I notice I even close my eyes for a couple seconds when I am walking or doing simple things. This isn’t like when a driver starts closing their eyes without noticing it; I very purposefully close my eyes just for a second or two to get a vague feeling of minor relief. Usually I feel like my mind is actually still working and I am wanting to stay productive, but my eyes and head just get tired even though the rest of me seems to have energy. Its almost like a synthetic tiredness, as if my water was spiked several times a day without me knowing; it’s very different from a normal tiredness. Often if I am at home I will feel it kick in and just have to drop what I’m doing, lay down and set my timer for 5-15 minutes just to recharge and then get back up and continue what I was doing. Then it might kick in two or three hours later and I’ll have to do the nap/timer session again. Before I go out and do anything, such as meet a friend or go to a movie, I preemptively take a short nap to prepare my body.

Also, when I wake up in the morning after a full 7 or 8 hours sleep, I am typically a bit groggy for awhile inevitably. Before I started changing my meds I would often wake up and have energy and used to love my morning time during the weekends. Now mornings aren’t horrible, but they aren’t really much to look forward to. On weekends I often take one of my quick naps within an hour or two after waking up because I get so groggy I just have to lay down. 

 

Dizziness details:

My dizziness from time to time gets bad enough to become an issue that really bothers me. These periods where it is bad usually only last for a few days, but more often the dizziness is a very minor symptom and just makes me feel a bit “off” for a half hour or so. It’s hard to explain and there are actually several different feelings of dizziness I experience. “Dizziness” isn’t even always the best word, but its the only one that I can think of that fits. Often it is just a vague sense of feeling disconnected and unbalanced. Sometimes when I am showering I do literally feel slightly unbalanced, but it is a very minor feeling and I never *actually* feel like I am loosing my balance. Another feeling is almost like the whole room is spinning, but at such a very, very slow rate that it is just enough to make me feel slightly uncomfortable. Sometimes another feeling happens where I feel slightly cloudy headed and if I turn my head quickly, it takes a second for my brain to readjust. This usually doesn’t last very long, and in fact, most of these dizzy feelings come and go within a half hour and don’t interfere with my life very badly. Oh, and another one is a vague “floating” sense that I sometimes feel when I walk down a hallway, for example. Again, pretty minor, but just enough to make me feel a little off. I should also mention that sometimes the dizziness transitions into tiredness; the dizziness evaporates and I am left feeling like I need to lay down from sudden fatigue.

 

Additional issues:

When I first got off Lex completely, I had really sore muscles in my back and shoulder blades within a few days. One of those curved self massage sticks really helped with that. I used to also have a really bad pressure in my head during the tapering process (but went away after a few weeks of stopping lex) and the massage stick also relieved a lot of that head pressure that I used to get. I no longer have the tension in my back, but my shoulders themselves often feel like they get tense, like there is a “grip” on them. Sometimes this is combined with a slight feeling of dizziness. When I am around my father to give my shoulders a quick massage it relieves a lot of the dizziness as well as the tension. I have read that anxiety can cause tension like this, but I have had anxiety my whole life and never have felt this shoulder “grip” before. But it may be an indirect, subconscious  anxiety causing this tension, as opposed to a direct result of lexapro withdrawal. Typically a short period of laying down helps with this also. 

 

Waves/Windows:

I have read different parts of this forum and found them helpful. I feel that the “waves/windows” idea is in line with what I have been going through. I feel that I am getting better, and then all of a sudden I will feel way worse for several days or a week, then I will start feeling better again for a week or so. However, looking back on the whole process, overall I think I am improving in the big picture scheme of things.

I went to the doctor yesterday and of course he told me it couldn’t have anything to do with Lexapro because I have been off of it for a few months. I also am having blood work done just in case it is anything else.

 

I guess my big question is do these things sound familiar to others and will these symptoms go away over time?

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brassmonkey

Hi Lex-- welcome to the group.  It sounds like things are going really well.  The symptoms you describe are with in keeping with being four months off.  On paper your taper sounds a little abrupt at the beginning and then a little fast, but that is comparing it with our usual recommendations.  It seems to have worked for you, which is great. You will probably experience various symptoms for a while as your body continues to sort things out, but they should decrease as time passes.

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KarenB

Hello Lexluthor,

 

I like your way of organising your intro - very easy to understand.  You might like to look in the Symptoms and Self-Care forum for ideas to smooth things a little.  Sounds like it's not too bad though - you made a good effort at a slow taper and that's paid off.  Many people find fish oil and magnesium useful.

 

You can also read in that forum about how some supplements can be too activating for you CNS and therefore cause you to feel worse.  You may have noticed gentle exercise is better than a big work-out, for the same reasons.  Coffee and alcohol can also cause worse symptoms.  

 

Have a good read around, and feel free to come back here to ask any questions.  It's good to have you here.

 

Best wishes,

KarenB 

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Lexy

The fatigue, sleepiness and dizziness you describe is exactly what I'm going through and I've been tapering soooo long and soooo slowly. You have described my physical symptoms to a t.

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Happy2Heal

hi Lex, thanks so much for your detailed description of what you are going thru, I myself am unable to find the words to describe what my withdrawal off of taking 40mgs of lexapro for approx 10yrs, and then 30mgs for the past couple of years, with a few attempts to go off the stuff completely thrown in over the years, that i did not keep track of, but which ended so badly I went back on the full dose, not knowing any better.

 

The dizziness you talk about, yup, I've been doing thru that since last spring and had no idea it was a WD symptom.

my fatigue has been overwhelming, I was sleeping up to 20 hrs a day (still no clue it was withdrawal, I "assumed" I was depressed, but knew that I didn't have any depressed thinking and did not feel sad, hopeless, worthless, etc)

 

I would sleep for 10hrs and be up for 2hrs and have to lay down, the tiredness would come on so strong and fast, and I'd be out like a light and wake up 4 or more hours later.

 

I didn't know anything about the proper way to taper, had no guidance from my doc who tried to switch me from lexapro to cymbalta, I think it was, by having me decrease my 40mg dose to 20mgs to 10 mgs to being off it completely, in a matter of DAYS, and then staring the cymbalta. I don't recall exactly how bad that was, but it was bad, and I went back on the lexapro, terrified of ever going off it again. This was about 3 yrs ago.

so when I went to taper off this time, I went a lot slower than that, and thought I was safe, only to now find out it was still way too fast.

I *think* I have been tapering off since late June but because my memory is almost non existent, I'm not sure. I could not tell my doc so I pushed it out of my mind so I wouldn't accidentally say something about it.

I was afraid telling her would not go over too well, and I was right, I just finally did tell her and she threatened to kick me out of the practice, not just with her but with the ENTIRE network of doctors, literally hundreds of doctors, that are affiliated thru one of the 2 main hospitals in my area. Talk about terrifying! she accused me of lying to her, I said, I didn't tell you because I knew you would not support this, and guess what? you don't! she is a primary care doc, not a psychiatrist and she herself has been wanting me to see a psychiatrist because she does not want to Rx my AD any more

 

so, yeh, wow.

sorry to go so in depth with my story, I probably should copy this to my thread so I have a few more pcs to the puzzle of my recent past (does anyone else have severe memory problems, is that part of WD? or should I be concerned about dementia or something more serious??)

 

I can't tell you how long this will last, and I can't tell you if the symptoms you describe will go away, I wish I knew

But I wanted to thank you for sharing your story as it is helping me to sort out mine, and helping to confirm, and reaffirm that what I am going thru is actually withdrawal and that I am not losing my mind, as it sometimes feels

 

I wish you all the best and I think there will be others with more helpful info for you, but thank  you for sharing what you did.

 

and now I feel like I repeating myself so I shall go......

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LexLuthor

I don't know how the waves and Windows works exactly but my experience since stopping as been that my symptoms themselves change. For example my tiredness used to be short bursts and now it seems longer and drawn out and I don't fall asleep as immediate when I nap. The different varieties of dizziness or cloudyness seem to fluctuate and last for differing amounts of time. Today I have been very tired all morning and the other day I was tired all day but a couple days ago I was almost normal through the day. I feel like the long lasting tiredness isn't an *improvement* even in the big picture. Some of the days lately have been some of the worst in terms of tiredness, worse than even the beginning when head pressure and cloudyness were the main issues. I guess when I AM feeling pretty good (aside from having to nap to reenergize a few times a day), those stretches can last for quite a few days and those are much better in general than most days at the beginning. So overall I think things are getting better over time. But the way I've seen the waves drawn out on this website , the later dips don't drop as low as the early ones, but for me my dips lately have dropped pretty low, and are in a bit of a different form than they may have been in my earlier symptoms.

Also I don't usually see it mentioned that the actual symptoms change over time in how they affect people, but that's what I've noticed. In fact it's hard to take any kind of supplement because I'll think "oh I wasn't getting this kind of dizziness until I took this probiotic"... But in reality all my symptoms are shuffling around and evolving randomly, often enough that these changes happen all the time when I am not adding any supplements.

 

Also I was wondering, just like everyone else, how long it may take to overcome these issues? I was only on lexapro at a normal dose for two years so I am hoping it won't be a several year process....

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KarenB

Change and randomness is what you can expect in w/d ;).  Each person it is different but after a while you can start to notice your personal patterns.  It helps if you keep daily symptom notes.  I do that, and every so often I turn them into a graph.  It amazed me how a pattern emerged out of what I'd felt were just random symptoms.  Over a month, 3 months, 6 months etc, and at different times in my cycle, there were definite patterns. 

 

But also, the actual symptoms can change over time.  One symptom that you've always had will fade away and another will emerge, and so on as the healing continues.  I used to get a twitching left eye, but now I don't.  I never used to get ringing years, but now I do.  I imagine that as different areas of our brains heal, we get different symptoms in affecting different parts of our bodies. 

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LexLuthor

I am wondering how long I should expect my symptoms to last.  I was on lexapro for about two years and tapered for one more year. I feel like perhaps it will be a shorter period than most people that have been on it for many years?

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LexLuthor

  It amazed me how a pattern emerged out of what I'd felt were just random symptoms.  Over a month, 3 months, 6 months etc, and at different times in my cycle, there were definite patterns. 

 

 

Karen, what patterns did you notice? And how detailed were your notes

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KarenB

The first pattern to emerge was that external stress in my life causes a big spike in symptoms for 3-4 days afterwards.  Then they settle down again.  Both PMS and getting my period also cause regular spikes in my symptoms.

 

Daily, I fit into the pattern of more symptoms in the morning and less in the evening (which is cortisol related).  

 

Now that I make smaller cuts, not all of the symptoms even show up anymore, eg eye-twitching, funny nose feeling, extreme anxiety.  And the ones that do show up are much more minimal, and the spike is 1-2 days after a cut (with my bigger cuts it would show up about 4 days after a cut). 

 

I need to wait for more of these tiny cuts and see what shows up on my graph then.  I like to be fairly detailed with my notes, because I find it reassuring to see the cause and effect. 

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LexLuthor

I had really bad head pressure for the whole time coming off of Lexapro, that was scary and it went away a month or so after my final dose. However, a couple more months and I began developing much worse fatigue


I think I noticed the fatigue was getting pretty bad late October or early November. Since then it has only gotten worse. I get 7.5 to 8 hours of sleep a night and feel groggy in the morning. On my lunch break I take a 20min nap and feel a bit better for awhile, but soon get tired again. When I get off work at 530pm I do a few things around the house and then take another 20 min nap. Then a couple hours later I get tired again and sometimes have to take a 5 minute nap. Basically any energy I have is in windows that are getting smaller and smaller. 


This has all gotten progressively worse over the last few months. I no longer feel like I am “slowly getting better”, I feel that these times are some of the hardest I’ve had to deal with because I have no energy.


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clearday

I don't know how the waves and Windows works exactly but my experience since stopping as been that my symptoms themselves change. 

Also I don't usually see it mentioned that the actual symptoms change over time in how they affect people, but that's what I've noticed. In fact it's hard to take any kind of supplement because I'll think "oh I wasn't getting this kind of dizziness until I took this probiotic"... But in reality all my symptoms are shuffling around and evolving randomly, often enough that these changes happen all the time when I am not adding any supplements.

 

Also I was wondering, just like everyone else, how long it may take to overcome these issues? I was only on lexapro at a normal dose for two years so I am hoping it won't be a several year process....

 

Hi,

 

It is typical for symptoms to change over time during the healing process. It is known as "morphing" of symptoms -

 

Sometimes, the "morphing" of symptoms feels like a "worsening" of symptoms.

 

I am 24 months since my last dose of Lexapro.

 

I have found that the windows and waves pattern, and the morphing of symptoms, is largely independent of anything that I do.  

 

For me, supplements haven't helped. This Lexapro recovery does what it wants, when it wants. It's a real beast, for sure.

 

For me, during these past two years, symptoms have come and gone out of nowhere. It's totally out of my control, and I don't know what to expect next.

 

I have done a lot of healing, but still have a ways to go.

 

I have had some very good windows lasting up to three weeks, and some pretty bad waves lasting up to a month. 

 

I had the terrible fatigue years ago during Prozac WD, it took a few years for that to go away, but it went away.

 

With this Lexapro WD, if I get six hours of sleep, I usually wake up tired and will feel lousy most of the day - especially during waves.

 

If I get that extra hour of real good sleep, at the end, then I am much better, plenty of energy, even during waves. 

 

I am physically active, I go running three miles a few times per week. I am very healthy overall.

 

Lexapro WD usually disrupts our sleep patterns, so the sleep we do get is not usually good enough to restore our energy. 

 

The WD symptoms and healing process also saps our energy. Lots of resources being spent to try to get our bodies back to normal.

 

I don't know how long it will take your body to heal from this. It will heal, but at its own pace. 

 

Your body will cycle through the windows and waves, the morphing of symptoms, doing what it needs to do to head back to normalcy.

 

I had left side body numbness, scalp numbness, head/ear pressure, chest tightness, insomnia, fatigue, unusual anxiety, minor shingles, sensitivity to substances.

 

Most of that all went away. I still have some chest tightness, and occasional sleep problems. But my biggest curse from this is tinnitus/head noise, 24/7.

 

This is a good video:

 

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LexLuthor

So it sounds like you took it for 5 years and then it took about a year and a half to two years to get pretty close to normal in most things aside from a head ringing?

 

I'm wondering if my process will go quicker as I was only on Lexapro a couple years and then a year long taper.

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LexLuthor

**deleted duplicate post, the forum was not displaying my post and I posted it again, but then it doubled**

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clearday

So it sounds like you took it for 5 years and then it took about a year and a half to two years to get pretty close to normal in most things aside from a head ringing?

 

I'm wondering if my process will go quicker as I was only on Lexapro a couple years and then a year long taper.

 

Certainly it's better for you that you were on Lexapro only three years rather than 5 years.

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LexLuthor

I was doing much better in the first months after my final dose. From everything I read here, the common idea is that even though withdrawal is bad, it slowly gets better over time. Mine got worse and caused very frustrating fatigue. Then it just stayed like that for a few months, then it got worse, then it went back to bad, but never "better." I've felt worse again in the last few days, with dizziness coming back a bit, floaters, and even more fatigue than normal... which is what prompted me to post. Anyways, I haven't experienced that "better over time" thing since coming off and I don't know what to make of the situation. 

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