emmabee: unsure ...

[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 August 4, 2016 by scallywag
added paragraphs and tags

[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.

[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.  

[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.  

[scallywag]

Keep posting about how things are going for you.

[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.  

[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.  

[scallywag]

emmabee -- Most people who take antidepressants don't need them and can liberate themselves from them by slowly tapering the dose.
 
Have you read these topics:

Non-drug techniques to cope with emotional symptoms

Fear, anxiety and panic

[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.  

[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.

[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.  

 

 

 

 

[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!

[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.

[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.

 

 

[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.  

 

 

[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. 

[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.  

 

 

 

[emmabee]

For the past few days my pain has been better.  But also, my emotional stuff has been worse.  

Last Winter and Spring, I had this constant sense of dread and negativity and fear.  Intense depression and hopelessness.  Late in the spring it started to ease up a little.  It comes and goes, like everything else, but it's back in full swing now.  

I keep trying to tell myself that this is another wave and it will pass.  I mostly believe it, but my negative mind keeps trying to convince me that this is just the way I am and it will never get better.

 

God, this is hard. 

 

 

[emmabee]

Jut got a call from my doctor.  Seems my labs were abnormal and I have to see a rheumatologist.  She said it looks like something autoimmune.  

Yay.

More doctors.

And more research...

 

[Chicago77]

Hope your doctor appointment goes well emmabee! 

[emmabee]

6 hours ago, Chicago77 said:

Hope your doctor appointment goes well emmabee! 

Thank you Chicago 77.

 

I went today, actually.  The doctor was pretty good, in that he listened to me and seemed respectful of my thoughts. I didn't talk too much about withdrawal, as I was fearful of being blown off.  I gave a basic history and left it at that.  He made a comment about SSRI withdrawal being brutal, but that it shouldn't effect me this far out.  I didn't argue with him, and just focused on what he had to say about my current symptoms.

He said that my high ANA lab results would normally point to lupus, but that my symptoms don't quite correspond.  He mentioned rheumatoid arthritis, but said it's unclear at this point.  He drew a bunch more blood and did a series of X-rays.  I follow up in a month, but he said he'll call if these tests give any more clarity on what's going on.  

 

He was really respectful of my desire to not take meds at this point, and was supportive of the dietary changes I've made.  He recommended I increase my turmeric/curcumin (I drink turmeric tea at least one a day, usually twice, but I can't tell if it's helping), and he told me to start a magnesium supplement.  

 

I bought the one he recommended, megnesium malate, and only took 1/3 of the recommended  dose tonight with dinner.  Now tonight I can't sleep and I'm afraid it's from the mag.  I've been  pretty calm all day, despite all the anxiety provoking activity.  And I'm exhausted, as usual.  But I just can't sleep and feel that anxious, ruminating thing happening, which was a big problem for a long time, but not lately.  

 

I've read through a lot of the thread on magnesium supplements, and maybe I need to try something different.  Or at least cut down the dose.  Will try it again tomorrow and see what happens.  

 

The deep dip in my mood that happened for a few days seemed to lift a little yesterday and today, now tonight I can't turn off my mind.  

Really want this rollercoaster to stop.  

 

[Chicago77]

I'm glad things seem to be okay health wise and they didn't find anything serious. That usually seems to be the case with people going through WD. We all feel like crap and think we are dying, but when we get everything checked we are usually okay. I had so many blood tests ran and I've had 2 MRI's since I got off Lexapro. WD mimics symptoms of a lot of other diseases. I'm exhausted all the time too, so I know how you feel. It's one of my worst symptoms. Maybe try the mag for a few more days and see if it helps. If not, then you always stop. I'm trying it again myself actually. I'm on day 4 and haven't noticed much of anything. What are your current symptoms? 

[emmabee]

Current symptoms:  

Emotionally, lots of ups and downs in terms of mood, days of deep depression or high anxiety, sometimes both, anhedonia, and inability to leave the house most days unless I have to.  Not functioning very well in terms of work (part time and low stress, but it's still a struggle) and I have no social life.  But...this is all better than it was.  I have lots more better days than I used to and the lows aren't as low as they were. 

 

Physically, total body exhaustion, weakness, and pain.  Always pain in my hands and wrists, and the rest comes and goes, including bad joint pain and stiffness and hot tingly pain in my back muscles and ribs.  Occasional mild headaches, which are rare for me and new.  I never get headaches.  And there's a weird tightness in my throat, doc said maybe thyroid related, it feels like there's something lumpy in there that makes it hard to swallow sometimes.  

 

Doc didn't actually say it's nothing serious...he said it looks like rheumatoid arthritis but isn't sure.  I guess some of my labs were pretty high.  I wish he didn't tell me that because thinking that it was "just withdrawal" was easier to deal with, because I could tell myself that as much as it sucks it will eventually pass.  But now I'm worried about a "chronic" autoimmune illness.  The one good thing is that I've read a ton about more and more people dealing with such problems through diet and exercise, and I've already made a pretty drastic change in my diet that doc said was in the right direction.  So I'm not freaking out about what he said as much as I could be. 

 

For now I'm just waiting and doing my best to take care of myself.   I took some mag with lunch today and no bad effects yet.  Last night was probably just due to added stress.  ???

 

Hope the mag helps you some, Chicago.  And thanks for the reply.  It helps.  

 

 

[emmabee]

I've been thinking about all of this doctor stuff lately, and about Chicago77's reply about being glad nothing serious was found.  I realize that you may be right, Chicago.  At this point, I don't know what's going on and the doctor didn't' say anything definitive, but my mind just jumped to "Oh my god, I've got a terrible illness" when he mentioned what he thought it might be.  High lab numbers don't mean there is a terrible disease taking over that will be there forever.  It could very well be all the stress of withdrawal creating havoc in my body.

 

It's just funny to me, that for a long time, I've avoided doctors because the whole experience of listening to whatever they told me all my life led me to where I am now, but as soon as I hear someone in a while coat tell me there might be a problem, I still believe what they say.  But they don't know, so why do I believe it?  Catastrophising, I guess.  

 

Maybe there is something there that will require further treatment, but maybe this is just where I'm at at the moment and it will get better.  

 

I guess I'm trying really hard these days to shift my perspective away from always negative...so I'm glad I caught myself in this situation.  

[emmabee]

Little update and another question...

 

for the the past week my pain has been better, but my fatigue and weakness seems worse.   Trying to take it in stride though. 

 

Have been taking 800 mg magnesium daily. Can't tell if it's helping, but doesn't seem to be hurting. 

 

Im wondering, in regards to exercise, if I should be pushing myself when I'm so tired. I'm not doing anything too strenuous, just taking a walk in the morning when I have the most energy, and trying to do yoga every day. Some days the walk wipes me out and I'm done for the day, some days I can push a little. 

 

But i can't  tell if pushing, walking more and doing yoga,  makes the fatigue worse or not.  Some days it seems so, other days it doesn't.  Anyone have any experience with this?  

[emmabee]

I think I'm finally realizing that most of the time when I have a question the answers are already posted somewhere on this forum if I search hard enough.  Just read a thread on exercise intolerance. and got some clues.  I guess I'll just keep doing what I can and remember to be gentle with myself even when I have more energy.

 

It's so hard for me to spend any amount of time reading anything though.  I want to engage more on this forum but I find I can only focus for brief periods and then my brain turns off.  I'm trying to browse around a little every morning and take in what I can.

 

I really wish I had learned more before starting this whole process.  I wish I had been more patient and gone slower.  I wish the doctors I trusted all my life had a clue...  LOL.  I guess all I can do now is keep learning and keep trying.  

 

 

 

[emmabee]

I had dental work on Friday and have been having increased problems since.  I was hoping that it wasn't really an issue, just pain from the procedure that would go away, but it's getting worse and my mind is all over the place worrying about it now.

 

I had two teeth ground down and temporary crowns placed.  First two days it hurt a lot after the numbing wore off and I started to get headaches.  Kept telling myself it was tender and would heal soon.  

Then I noticed everything else feeling worse too.  Body pain, fatigue, weakness, and mood stuff.  Increased negativity and anxiety.  There have been moments, and even hours, where it all lets up a little, but every day since it's gotten progressively worse.  I went back to dentist Monday and he ground down the crows a little, thinking that the bite was off and maybe that was the cause of the pain.  Then last night it was worse than ever and I had a wave of intense joint pain.  

 

I still haven't heard back from the rheumatologist about all the test I had done 2 weeks ago, and I'm wondering if I should call and ask if whatever is going on could have something to do with slow healing and pain from the dental stuff.  I feel like I should ask that stuff before I go back to the dentist.  I mentioned the body pain stuff to the dentist before the procedure and he kind of blew it off, saying it shouldn't affect anything.  I didn't mention the AD withdrawal because I just didn't want to deal with another professional not believing me.  

 

Don't know what to do...the past 2 days have been unbearable.  

 

[emmabee]

Little update...

My tooth pain has gradually gotten better.  I still can't chew on that side, but the constant pain is gone.  Supposed to get permanent crowns placed in 2 days and am nervous...I don't know if I was sensitive to the numbing agent used or if it was just a coincidence, but I had a pretty strong wave for about 2 weeks after the procedure.  Mood was more negative and the fatigue and weakness was worse.  Joint pain seemed to intensify for a few days, but has been receding.  It's still there, but it's definitely better.   Seeing the rheumatologist at the end of the week too.  At this point I'm pretty sure I'm not going to get any answers and am a bit hopeful that this will all recede with time.  

 

For the past 4 Sundays, I've been going to a nearby Buddhist temple for a combined lecture and meditation exercise thing they do every week.  This is a huge deal for me...just getting out somewhere that I don't have to go is a big step.  I've been trying really hard to make meditation a regular practice...trying for months with poor results.  I struggle so much with negative thought patterns, and it's still feels impossible much of the time.  But going to the classes and getting some tips may be helping a little.  I'm finding myself able to let go for longer and longer, even if it's still a struggle.  Practice makes perfect though...so I'm going to keep practicing.  

Maybe one of these days I'll actually interact with the other people there.  Baby steps...

 

 

[DaveWales]

Hi emma, did you get results about autoimmune tests? How are you feeling? Regards dave 

[emmabee]

1 hour ago, DaveWales said:

Hi emma, did you get results about autoimmune tests? How are you feeling? Regards dave 

Hi Dave

 

Thanks for checking in. I didn't realize how long it's been since I've posted.  

 

All the tests I've had came back inconclusive.  Rheumatologist said he was concerned about the high ANA tests but nothing else was abnormal, and he said if he had to diagnose me he would call it fibromyalgia, which, as I understand it, is simply what doctors call pain that they don't know the cause of.  And even when I did more research on Fibro, it doesn't fit, because I don't have some of the classic symptoms, like tender spots on the neck and back.  

Anyway, Dr. wanted me to take Elavil, but I said no thank you, at which point he basically said that I can just deal with it and see him again in 6 months.  

 

Basically, I'm now thoroughly convinced that this is all neurological stuff due to WD.  And even though it still sucks, I think it's getting better, though slowly.  My hands and wrists don't hurt constantly anymore, and the knee and hip and shoulder stuff is not as intense or frequent.  My energy is still pretty low most of the time though.  I have to fight to get through the most basic stuff. Some days it's overwhelming, some days not.

I'm still forcing myself to do yoga every day.  Haven't been able to do what I used to...I'm weak and my balance is terrible.  But I'm doing it.  And I'm still sticking fastidiously to my paleo diet, though some days i doubt it's doing anything to help and I just want a pizza.  But i'm not giving up yet.  

 

And since i'm unable to fall asleep tonight, I might as well continue my update.

I think for a few weeks I was doing better emotionally, but for the past two or three weeks have been in a bad wave.  I am not quite as anxious, or maybe I am but in different ways (like freaking out over phantom smells).  But the depression...the negativity, the pessimism, the hopelessness, the dread....all so much worse.  I'm stuck in constant rumination and what I call my shame cycle.  

I have been in the process of getting crowns on my teeth.  Finally had no more pain so had the permanent cementing done yesterday.  Dentist insisted on numbing me and I think that made things worse, though I'm not sure.  I've been bad for about a week, but the misery has been overwhelming since yesterday.  

I know that the onset of winter hasn't helped.  I haven't been for a walk in almost two weeks because I can't deal with the cold.  I  can't make myself leave the house unless I have a firm commitment to be somewhere important or run out of food.  

I could go on and on...but basically right now things suck.  Constantly trying to remind myself that this will get better but it's so hard once the deep negativity sets in.  I keep sinking into the belief that I've ruined myself completely and there's no hope.  

 

Finally, I just want to say how grateful I am that this place exists...I don't post much but I keep coming back to remind myself that this may, some day, get better.  

 

 

   

 

 

 

[emmabee]

Today makes one year since I last took any medication.  I wish I was able to write something upbeat and full of hope to mark the day, but I can’t really do that yet.  There are some things that are better, but overall, I’m still struggling a great deal and don’t have any semblance of what I think a ‘normal’ life should look like.  

 

Before I went off meds I was depressed and withdrawing from the world gradually, with almost constant suicidal ideation.  When I was fast tapered from high dose Effexor and Abilify by my doctor and switched to Lexapro for about 4 months, the SI became more intense, and I had so many physical symptoms that felt more acute and changed frequently…nausea, dizziness, feeling drunk, fatigued, pain, GI problems, insomnia, cognitive difficulties, memory issues, vision disturbances…it was a whirlwind of discomfort.  I was miserable, and my moods were volatile.  I feel like I never stabilized after the rapid taper from Effexor and maybe because of that I tapered off the Lexapro faster than I should have.  I tried to go slowly, but I never felt any relief from symptoms, nor did they really seem to get worse, just different throughout the 6 months of tapering, and I just wanted the stuff out of my system. 
 
A few months after my last pill I started to experience some windows.  There were days that felt easier than others, my moods started to calm down and feel less intense.  There were a few times that I was able to go out to family functions and feel almost normal.  I went to my part- time, non-demanding job and was able to interact with my boss with a smile on my face sometimes.  I was still mostly homebound though, only leaving to go to the office or the grocery store or bimonthly appointments with my therapist.  

 

Then late in the Spring I started to have increased physical symptoms…joint and muscle pain and fatigue that got more and more intense over the course of a few months.  I finally went to a doctor and had some abnormal blood tests, but ultimately they couldn’t pinpoint what was wrong.  The rheumatologist says it’s fibromyalgia, my GP calls it chronic fatigue.  I put very little faith in either of those terms and finally came to believe that it is indeed withdrawal and will heal with time. 

 

I am strictly following a nutrient dense diet, cut out sugar and gluten and most grains, unhealthy oils, very limited dairy, no alcohol (which was never really something I cared about).  I cut out caffeine for a few months but have since gone back to one cup of coffee a day.  I take magnesium supplements and drink turmeric tea.  I am doing yoga every day, trying to meditate.  In the warmer months I took long walks every morning. 

 

I know that winter is hardest for me, always has been.  Since mid December I’ve only gone out for a walk maybe 4 or 5 times, because I just can’t stand the cold.  This year, the cold feels so brutal that it’s actually painful.  I’m also not working much because the winter is slow and my bosses don’t need my help at the moment, which is both a relief and a problem.  Being at work often feels like torture, mostly due to physical discomfort, but at least It was getting me out of the house.  I don’t like the job, it barely pays any money, and it feels sort of shameful because even if I wasn’t happy in my old career, I used to be self sufficient and functioning, and now I’m earning less than I did straight out of college.  But I know that having someplace to go for a few hours a day was important.   Horrible weather, not getting out regularly, and not walking have probably made me feel worse over the past 2 months.  I’m extremely isolated, have no friends, and rely on my husband for everything.  I could expand on that last sentence for pages, but it’s too much to go into here.  

 

There is some positive…the body pain is very gradually getting better.   I still have days when it flares up to the point of excruciating, but these days are fewer and farther between, and in general the pain is less severe than it was.  The exhaustion I feel almost every day may be starting to ease up a little, but not as much as I would like.  It seems like I have a point of tolerance for physical activity and any time I go past that point my body rebels and wants to shut down. 

 

Emotionally, I’m a wreck.  But I suppose better than I was a year ago.  I’m more in control of my anger, feel less volatile.  My sleep is good most of the time.  The intense waves of fear over little things, the phantom smells, the reactivity to tiny stressors, are all getting better.  Suicidal fantasies are there occasionally, but it is by no means a daily thing like it used to be.  

 

The worst thing I am trying desperately to get a handle on is the almost constant rumination.  Looking back on all the things in my life that I did wrong and getting caught up in regret and shame.  The feelings of hopelessness surge up frequently, but I guess they’re not as intense as they used to be.  And the agoraphobia, if that’s what this is, is pretty crippling.  I have a few places that i can make myself go when it is crucial, like grocery shopping or appointments, but even that is tough for me now.  Just getting in the shower every day feels like too much sometimes…but I continue to manage getting the bare minimum done.  

I lack any positive feelings for anything, though I try to grasp onto any little thing that my brain registers as good.  I am at odds with the world.  I don’t feel love for anyone.  I suspect that this has always been there, and a number of negative experiences, during the period when my meds were pooping out, cemented the deal and I pretty much gave up.  

I often struggle with “Is this withdrawal or is this just what’s always been there making life harder for me?’  I know that since I began this process everything has intensified, and I remind myself daily that it will improve. It’s just so hard to wait it out.  

 

Overall, despite everything, I’m hopeful.  I fight against that deep, childish voice in my mind that tells me to give up every day, and keep coming back here to remind myself that this is real, and that healing is possible.  

 

[scallywag]

Good for you, emmabee, for maintaining optimism regardless of the thoughts that cross your mind!  Actually, much better than good -- FANTASTIC!

[emmabee]

Thanks for that, Scallywag.  And thanks for coming back and reading through that post.  

 

It's hard for me to grapple with all the struggle and negativity, and though all of what I wrote above is true, it's also true that the glimpses of optimism are increasing.  One of the most confusing things about this process is that depending on my mood, or the depth of the wave I'm in, whatever I'm feeling at the time feels so real and all-consuming....but the windows feel just as real.  I reread my above post a day after I wrote it, and I was feeling more hopeful that day, and I wanted to come back and edit my post...to show that there is more positive than I may have expressed.  

 

Basically, it is forever changing, but there is forward momentum happening.  It may not be happening as fast as I want it to, but it's real.  

 

 

[emmabee]

It’s been a long time since I’ve posted. 
I’m still struggling, and don’t feel up to writing an in depth update right now. I’ll work on that soon. 
 

What I’m wondering is if anyone on the forum has gone back on meds after several years off. Are there any posts or threads written about this topic?  
 

I don’t know if I really want to go back on meds again, but things have gotten really bad and I don’t know how long I can go on this way, so the thought crosses my mind a lot. 

 

Any info would be helpful. 
 

 

[Leila]

On 12/7/2020 at 10:11 PM, emmabee said:

Are there any posts or threads written about this topic?  

Dear @emmabee, I'm sorry you are still struggling after years... When I read some stories, I found people who ask your same question but you had to know that it's a site that help people to quit drugs so it's very difficult to suggest the better thing to do for you. I think if you could explain the reasons or situations that dragged you down, you could help moderators to get a more complete picture...

 

[emmabee]

Thank you for replying @Leila.

 

I've had a rough week and haven't been able to sit still long enough to respond.

I'll try to make this concise...

 

For the past few years, not much had changed.  I've had periods of feeling worse both physically and emotionally, then periods of improvement.  I've seen 2 different therapists trying to get some help with my anxiety and depression, but nothing seemed to really help.  I saw several doctors trying to find some answers to the physical side of all of this, including extreme fatigue, pain, weakness, GI problems, etc.  I've tried extreme diets, many supplements, saw an energy worker, and made a pretty solid effort with a neural retraining program (DNRS).  

Nothing made any real difference and I just sort of settled in to how I felt, going with the ups and downs.  

 

Last Spring, things just sort of magically got a little better in terms of physical symptoms.  I had a good stretch from May until September, then started to feel worse again.

 

Then about a month or so ago, I had a problem with a tooth, and ended up getting a nasty infection and needing oral surgery.  It took about 3 weeks to get the infection down with amoxicillin (first time I've taken and antibiotic in about 20 years).  I had surgery to remove an impacted wisdom tooth about 10 days ago.  Then a few days ago I started having pain in my ear and throat.  Went to the doctor and he found a lump near my thyroid, and I'm scheduled for an ultrasound in 2 days.  

 

Maybe it's the stress of all these recent problems, on top of the resurgence of this crazy pandemic and the start of winter, which I always struggle with.   Maybe it's due in part to the antibiotics, and maybe it's been ramped up by the novocaine given during my tooth extraction...but I have never felt anxiety and panic like I have in the past few weeks, and most specifically in the past week or so.  

 

I'm having full blown panic attacks in the morning, almost every morning, and then a lighter version of the full blown panic that can last hours at a time. When I'm in the midst of these attacks, my body clenches up and my brain convinces me that there is something terribly wrong in my body.  I feel like two different people...it's so extreme.  

 

If there is anything anyone can suggest that might help me get through this I'd be really grateful.