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emmabee

emmabee: unsure ...

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emmabee   
emmabee

Hi all.

I've been on antidepressants for most of my life.  I'm in my mid forties and was first prescribed ADs at age 16 for depression and anxiety.  My drug history is tough to remember.  During my teens and 20s, I was prescribed Pamelor, Prozac, Zoloft, Effexor, Effexor combined with Depakote, Cymbalta, Prozac again in combination with Lithium, Lamictal until I got the rash, a brief trial of Neurontin in combination with another SSRI.  I'm sure I've forgotten some.  Some of those worked for a bit but nothing worked for long.  

 

Then in my late twenties I was prescribed MAOIs, first Parnate, then Marplan, which seemed to work but I had to take Dexedrine with it because it lowered my blood pressure so much I was passing out.  After about 4 or 5 years I was not functioning well again, and was tapered off the Marplan and Dexedrine, which was one of the worst experiences of my life.  Now I know it was done way too quickly and I was in severe withdrawal from both meds for about a month.

 

 I went back on Effexor XR, at 450 mg and stayed on that dose for over 10 years.  The first 5 of those years were probably the most functional years of my life, and then things started to slowly creep back toward noticeable depression and anxiety, and increasingly worse socialphobia.  My psychiatrist first tried adding a small dose of Ritalin in attempt to help the Effexor work better, but that didn't seem to make any effect at all, good or bad.  Then she added a low dose of Abilify, and I stayed on that for about a year without any major benefits or side effects.  I think I just got so used to feeling bad that I just didn't bother to change anything for a while, and hid from life rather than dealing with it.  And I was afraid of going through another major med change, so i just kept hiding.  

 

About 8 months ago, a number of life changes led me to living in a new place and being out of a job (by choice, initially). I got stuck in a rut, stayed hidden at home most of the time and kept putting off looking for work, which I had initially planned to do early this spring.  I was feeling worse and worse, and realized that I was putting up with a lot of negative side effects of the high-dose Effexor without any real gain, so my psychiatrist agreed it was time to try something new.

 

 I first tapered off the Abilify in March of this year, and I'm not sure I noticed any withdrawal at the time, because I was feeling pretty depressed to begin with.  The only noticeable issue was some GI disturbance and sleep problems.  Then in April I began to taper off the Effexor, and now i realize it all happened way too quickly.  I went from 450 mg to 300 for about 1 week, then to 150 for another week, then to 75 for another week or 10 days. Throughout all those weeks, I had all the discontinuation symptoms, but I was prepared for them and was able to manage.  I wasn't working and was able to just stay home and suffer through it.  

 

When I stepped down to 37.5, I had a what I think was a serotonin syndrome effect.  One day while I was out walking I suddenly lost all my energy, my body felt like lead and my heart started to pound and my entire body was dripping with sweat.  The entire episode lasted only about 15 minutes, but it was pretty terrifying.  My doctor then suggested a minor reinstatement, and then a continued taper once I felt a little better.  It took me about 3 or 4 more weeks to get off the last 37.5 mg.  So by the beginning of June, I was off all Effexor, and had started taking Lexapro, first at 5mg for about a week, then up to 10 mg, which is what I'm taking currently.  

During most of May and June, aside from the physical withdrawal effects,which were really uncomfortable, I felt better in terms of mood.  I did have mood swings, and periods of almost manic feelings, but these weren't too bad.  Then for the past month or so, the depression and negativity and anxiety have been getting steadily worse.  I've felt suicidal a lot, but it's more an ideation thing, I don't believe I will ever be able to actually kill myself for a lot of reasons.  But I really believe I've mostly given up on life.  

 

I've been in therapy most of my life as well, but I'm starting to realize that aside from taking pills and complaining about how bad I feel, I've never done any real work to get better.  I'm wondering if all the meds have made me worse, and after doing a lot of research and browsing around this forum, I feel like it might be time to stop the meds all together and actually make an active effort to learn some new ways to live.  

I saw my psychiatrist yesterday and explained how I've been feeling, including my thoughts about tapering off all meds.  She was somewhat open to the idea, but didn't actually encourage it.  Somehow during our meeting, I agreed to raise the dose of Lexapro to 15 mg rather than try to taper it.  And now I'm wondering why I did that.  I think in part because I didn't feel strong enough to challenge my doctor.  But I woke up this morning and took the regular dose of 10 mg, and am not sure where to go from here. 

 

I apologize for the lengthy post, but this has been such a long journey.  I'm hoping to hear some thoughts from others about what my next best step might be.  

Edited by scallywag
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scallywag   
scallywag

emmabee -- Welcome to Surviving Antidepressants (SA)!
 
I hope you'll find the information in the SA forums enlightening and helpful for your taper.  I'm sorry that you are in the position that you need the information, but am glad that you found us.
 
Thank you for providing a detailed history.  A request: Would you summarize your history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-18 months particularly? Any drugs prior to that can just be listed with start and stop years. Please put your withdrawal history in signature  
 
Just to provide a quick summary until you can create your posting signature,

you previously took

  • Abilify for one year and discontinued in March 2016
  • Effexor XR 450 mg for 10+ years and fast tapered in April & May, last dose was at the end of May

 You're taking Lexapro which you started in late May/early June 2016 and your current dose is 10 mg.

 
The 15 minute episode when "I suddenly lost all my energy, my body felt like lead and my heart started to pound and my entire body was dripping with sweat." was almost certainly caused by withdrawal from the drops in Effexor XR.
 
Your report that over the last month your symptoms  include

 

...  depression and negativity and anxiety have been getting steadily worse.  

...  suicidal ideation , I don't believe I will ever be able to [act on the thoughts].

...  I've mostly given up on life.

 
I'm inclined to think that your current symptoms are also resulting from Effexor withdrawal. Ten milligrams of Lexapro is not a trivial amount, that may be a factor as well.
 
For future reference: Tips for tapering off Lexapro (escitalopram)
 
Our focus now needs to be getting your CNS (central nervous system) stabilized.  Would you take notes on paper of your symptoms and Lexapro doses for a few days?  Dr. Joseph Glenmullen provided a helpful list of common w/d symptoms in his book The Antidepressant Solution.  You can find and download that checklist in this topic here at SA:
Glenmullen’s withdrawal symptom list
 
Continue to look around the forums. Come back to post your questions here.

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emmabee   
emmabee

Thanks for the reply scalawag.  I think I was working on my signature while you posted.  

 

I've been trying to keep track of my symptoms over the past few months in a journal, and I think the checklists you suggested will be pretty helpful in being more accurate, so I will definitely use them. 

 

I think the thing that prompted me to post today after lurking for a while is that I'm unsure about continuing treatment with my current doctor, because I don't think she believes in the long term withdrawal effects and seems intent on continuing to medicate the symptoms.  

I'm currently considering my options and leaning toward finding a psychiatrist who seems more open to the idea of trying to help me get off meds so I can give my body a chance to stabilize.  

 

I'm really not sure if I believe that going off meds is the right choice, but I know that after almost 30 years on them, I haven't found the answer yet.  

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emmabee   
emmabee

Hi again.

I've been paying attention to what I've been feeling, and reading through my journal, and can say that most of the obvious withdrawal symptoms have abated for about the past month.  The shakiness, the nausea, the rapid mood swings, the extra energy, brain zaps, joint pain, vertigo, feeling almost drunk, feeling flushed, feeling cold, feeling exhausted all day...all of that has subsided.  

 

But since I began my taper in April, I have been sleeping much more soundly and longer than I ever have.  Prior to the taper, I often struggled with insomnia and the worst side effects of the Effexor over the years was terrible night sweats.  In recent years, I also develop incredible tension in my sleep, and a tendency to clench my jaws so tight that I had headaches and jaw pain every morning. Since I stopped the Effexor the night sweats have decreased greatly, and when I do sweat it's only a fraction of how bad it used to be, and the tension in my jaw is still there but also not nearly as bad.  

 

The problem is, I'm not sleeping well again.  I've had a few nights of restful sleep, but at least half the nights in the past week or so I've had insomnia due to what I call my negative thought cycles.  It was such a relief to be sleeping well after years of struggling, and I'm frustrated that now I'm struggling again.  Another withdrawal symptom I've struggled with is diarrhea daily since the beginning of my taper, and that, too has started to normalize in the past week or so.  I'm not necessarily upset about that part though.  I mention this because I know that something is changing again over the last 7-10 days.

 

As far as my mood goes, I have a really hard time knowing what I'm feeling.  Some days are better than others, but I think I've felt bad for so long that I'm used to it, and it's hard to distinguish what I'm feeling from one day to another.  Having Dr Glenmullen's chart will help with that, I think, so I appreciate the link.  

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scallywag   
scallywag

Keep posting about how things are going for you. :)

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emmabee   
emmabee

For the past 2 days, I was totally paralyzed.  I was just crippled with fear and unable to move from the couch.  Today is better.  I still feel anxious and my usual inability to get out and do anything, but the absolute stuck-ness and feelings of hopelessness have gone for the most part.  I've been able to handle a few phone calls that I've been putting off and made a trip out to a farmer's market.  Not much, but for me, it's a big deal, especially after the last few days.  

While I was driving to and from town (I live in a rural area) I noticed feeling sort of disembodied.  Like I'm there, but not completely.  It's almost dissociative, I'm not quite sure how else to describe it.  Such a strange feeling.  

Not sure what else to say at the moment.  This is really hard and I have difficulty keeping track of my feelings because they seem to change quickly and drastically.  

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emmabee   
emmabee

Can't sleep again so I figured I'd add an update...

 

I woke up today and was incredibly anxious.  Like nauseatingly so.  I wasn't shaky or tremulous, but felt my stomach roiling with anxiety.  I had an appointment with my therapist, and it's an hour's drive away from where I'm living now, and the drive was torturous but I made it.  (I would have found someone new to work with when I moved last winter, but I can't imagine trying to create the relationship I have with my current therapist with someone new, so I make the trip every week.)  I had lots of dissociative feelings again while driving today, but not at all to the point where I felt unsafe behind the wheel.  Just constantly lost in thought and worried.  And again, nauseous.  

 

Anyway, despite my therapist and my pDoc wanting me to raise my dose of Lexapro recently (and/or add other stuff), after lots more discussion today I think my therapist is finally on board and completely understanding how I feel about eventually going off all meds.  She has been doing more research at my request, and admitted to finding lots more info about venlafaxine withdrawal than she was previously aware of, though she did still seem a little skeptical of the long term wd effects of most other ADs.  But she is looking into it, so that's something.  

 

We came up with a plan and I agreed to stay where I'm at, currently on 10 mg Lexapro, with no changes for the next 2 months, just so that I can stabilize and then at that point she will support me if I still want to start tapering.  She works closely with pDoc, and has assured me that they will work in concert to support me through this.  I have some doubts about pDoc being on board with the 10% taper when the time comes, but we'll see.  For now, this feels like a huge relief....to finally feel understood and validated in my desire to eventually get off all this stuff.   

 

Tonight I'm still very anxious, and when I try to fall asleep I keep getting bombarded with worries and negative thoughts.  Earlier I had a few quick mood swings...toward irritability and then sadness, but neither lasted long.  I think the CBT stuff I've been trying to focus on has been helping.  

 

I just keep getting scared, especially when the worries and negative thoughts hit, that I'lll never get through this.  Part of me wants to believe that this is all WD and will eventually get easier, but it's honestly hard to hang on to that sometimes, after years of believing that I will always need a pill (or 5) to feel better.  

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emmabee   
emmabee

@scallywag  Thank you for these links.  Without looking for long, I found my way to Beyond Meds, where I plan to spend a lot of time reading today.  

I understand that many people do well without meds, and I sincerely hope to be one of them, and I believe that eventually I can be.  I just bought into the belief that I needed them for so long, and am coming to terms with the anger I feel about so much of my life being lost to the fog, and/or not being able to heal what really needs fixing due to temporary relief brought about by ADs making me think I was OK for a while.    

 

A lot of what I'm working on with my therapist is embodied trauma, and I now believe that this work will only really be beneficial once I'm off all the meds and can feel what I'm going through completely.  

 

I want to start tapering the Lexapro right away, and wonder if my therapist's suggestion to stay put for 2 months is warranted.  From all that I've been reading here, it seems it may make sense, but does 2 months seem excessive?  I'm not sure.  

 

Side note...I don't feel like I'm quite able to express what I want to say again today...can't keep my thoughts straight and keep veering off in different directions, as well as forgetting words.  I get that this is another symptom...a very frustrating one.  

 

Anyway, thanks for the response.  

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scallywag   
scallywag

The change from thinking of yourself as "someone who needs drugs" to "someone who ____ [fill in the blank]" is a giant leap.  I'm glad you have support as you go through that.

 

Engaging in therapy to deal with trauma may be a challenge while tapering a psych drug.  It's a good question to consider.

 

You had a fast taper from 450 mg of Effexor in April & May and experienced symptoms toward the end of that. You refer to those withdrawal symptoms as a "serotonin syndrome episode" in your signature. If I were you, I'd delay tapering.

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emmabee   
emmabee

Hi all.

I signed up and introduced myself on this site about a year ago, but I found that as my withdrawal got more intense, searching for information and trying to engage on this forum made me feel worse...information overload, I think.  But now I'm almost 7 months free of meds and I really need some help.  This has definitely been the worst year of my life, but I'm determined and there have been many improvements.  The worst of the emotional symptoms have gotten better, but physically I'm a wreck.  Throughout it all, I've avoided doctors.  I had a basic check up in June just to make sure that there was nothing obviously wrong, but since then things have gotten worse and I'm afraid to go back to the doctor for many reasons, mostly because I don't have faith in medicine at this point.   

 

Starting in about April or May, I had increased fatigue, leg aches, and strange pains in my upper back and ribs that felt like a hot electric current running through my muscles. In the past month or two, I've developed intense joint pain.  It started with pain in my hands and wrists, and now has spread to my knees and hips, sometimes so bad I can barely walk.  I have windows of feeling better, then a few days of pain so intense I can't function.  On those days I also have increased vision problems and confusion.  The hand and wrist pain is most intense in the morning, and that is the one symptom that is there every day.  I suspect a circulation problem is causing this because my hands and forearms fall asleep when I do...I wake up with them numb and tingly every day and then the pain sets in.  

 

I've radically changed my diet, following basically a paleo plan, and I'm 3 weeks into it (following the Kelly Brogan protocol).  I'm guessing that my body is detoxing and perhaps that's making everything feel more intense?  Also, since January, I've been doing yoga every day and have been taking long walks every day since Spring.  Some days I can do a lot, some days I have to be very gentle with myself.  I'm doing everything I can to help myself through this naturally.  

 

What I'm constantly afraid of is that there is something more going on that I'm ignoring because I assume it's all related to withdrawal.  I worry about things like Lyme's disease due to where I live, because even though I don't recall having any ticks on me in the last year, it's possible.  I tested negative in June, but I know that the tests for Lyme's are not at all reliable. I'm afraid that if I tell my doctor all my symptoms, she will urge me to take massive doses of antibiotics, which terrifies me because who knows what kind of havoc that could wreak on my already struggling body.  

 

I'm not even sure exactly what I'm asking for here...  Am I being irrational avoiding doctors, or am I making the right choice?  If anyone has any advice on how to deal with doctors to get through this, or alternative ways to deal with my symptoms, I'll take anything I can get.  

 

And sorry this is so long.  

 

 

 

 

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Chicago77   
Chicago77

Hi Emmabee, 

 

I have bad muscle and joint pain too. Although it lasts awhile, I do think it's part of withdrawal. I never had this before and the intensity of my pain has lessened. I thought the same thing as you. That I had some terrible disease, but now that more time has passed I don't believe that anymore. I was very bad at 7 months. That's great that you are doing yoga! I'm sure that will help. Some other things that help me our epsom salt baths and heating pads. I try to stretch a lot too because my body is so stiff and tight. Hang in there! It will get better! :)

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DLB   
DLB

Wow, same here. I had intense muscle and tendon pain for about two years during which time I got diagnosed with a autoimmune condition which affects my muscles and tendons. I always had terrible pain when coming off or starting this crap. You might want to make sure you were never given A fluoroquinolone antibiotic like I was. It devastates certain peoples muscles and tendons. I was a victim of that poison too. At a little over 2 years out I started to be a lot less stiff and my wrist and thumb pain is gone. Still have weird legs but not as painful. I feel it is a very slow physical recovery and am not sure if it is also my withdraw induced autoimmune disease or just simply withdrawal. I do feel a lot better now though but still pain all day...

 

I suggest you see a rhumatologist to check you out for any autoimmune condition. I tested negative for rheumatoid arthritis but have psoriatic arthritis without ever having psoriasis! And they say it was weird I got it with no relative ever having psoriasis and at 45 years old. I don't know where you are in NY but there is several good ones in Westchster and Putnam  counties.

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emmabee   
emmabee

Thanks for the responses.  I'm at a point where I question everything.  Life was not so great while on meds, which is what led me to finally question why I continued to take them.  I'm still sort of glad I stopped, because I have some hope that this will eventually get better, but it's so hard to hang in there.  When I hear how long it can take to start feeling well, I start to lose that hope.  

 

I'm going to see my GP next week.  Worried that she will find something wrong, and worried that she won't.

 

Will write more at another time...I have questions but I'm pretty foggy tonight so not sure where to start.

 

 

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emmabee   
emmabee

So I've had a few days of decreased pain.  It comes and goes, but has been milder this week.  

I'm seeing my doctor in a few days, so have tried to put off worrying about it until I see her, which has been easier since it hasn't been as bad.

 

But I have so many other questions.

One of the things that led to my decision to stop taking meds was that over the course of several years, I started to notice that I had lost interest in everything.  After doing a lot of research and learning about the demotivating effects of SSRIs, I was sure that that was the cause and one of the may reasons I decided to withdraw.  But I also know that a lot of the stuff I struggle with has to do with unhealthy coping skills I developed along the way.  Like rejecting things rather than allowing myself to be rejected, as an example. 

 

I know that the emotional and social stuff I struggle with has been there my whole life, has definitely not been caused by my withdrawal, but it has gotten so much worse. I've barely been able to leave my house...except for things that are absolutely necessary.  If it's not something I HAVE to do, I don't do it.  And I'm angry at everything!  It's like an existential crisis...the world doesn't make sense so I avoid it.  

 

I guess I'm wondering if this stuff will truly get easier as my brain and body gradually adjust to a new normal.  The things that are obvious withdrawal effects...the mood swings, increased anxiety, physical symptoms, etc...I can wrap my head around all of that...but my total rejection of life in general is something that scares me.  

 

 

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Chicago77   
Chicago77

I can totally relate! I have no motivation to do anything which isn't me at all!! I have no interest in things anymore and everything feels like a chore. I can see it's not me, so that's why I'm more forgiving. I was always a go go go kindof person who had lots of hobbies and interests. Right now I have zero interest and it's even really hard to get myself to do normal things like laundry, grocery shop, etc. 

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emmabee   
emmabee

Went to the doctor today.  It was a letdown.  

She's a new doc to me, and when I first met her last Spring I had high hopes.  At the time, I told her the very basics of my history and that I had come off all my meds, and she was really supportive and seemed understanding.  Of course, I didn't tell her everything, and maybe made myself seem better than I actually was at the time.

 

Today she still seemed understanding of my situation, but not totally there in listening to my concerns.  She actually suggested that low dose antidepressants could help with pain.  I told her that I am not at all open to taking any psychoactive meds, period.  And that I wasn't there looking for symptom relief...I just wanted to make sure there was nothing major wrong.  

 

She seemed skeptical but okay with it.  She took a ton of blood to test for things like rheumatoid arthritis and lupus, and something else that I can't remember.  So now I wait.

 

This is all very frustrating.  Like most of us, I just wish there were more doctors out there who understood what we are going through.  

 

 

 

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