RivkaE Life lost? Seeking stories and encouragement

[RivkaE]

I am now in my seventh month of protracted withdrawal syndrome (I had to go cold turkey because of sub-acute serotonin syndrome --mostly parkinsonism and brain fog erupting into a lethal level of high blood pressure and analphylaxis -- new one!).  I am now worse than I was last winter when I was bedridden. 

 

Biggest problems all center around my autonomic nervous system  -- sleeping, eating, blood pressure, neuropathies, as well as a deep depression.  Of course, I have had a lifetime of major depressive disorder -- but I really fought my way through it.  I was fun, funny, and high achieving! I am now for the first time emotionally numb (can't even cry). For the past ten years I was depressed and on increasing doses of meds (why I am here) but got by (and actually excelled at some things, like my teaching) until I became ill.  I am now on disability and can't imagine working again.

 

I had been obsessed with suicide for several months.  Can't do it -- I have a beautiful adult son and a loving husband.  I also have a lovely home I now can barely leave.  So the big question is, how do people experiencing this find hope, strength, things they can do, and and a life to live? 

 

I also feel so shunned -- by friends and even doctors!  Have some great stalwarts by my side, but I really can't do much now.  My life has turned into the couch for the most part

 

I would so appreciate encouraging and kind words!  (Silver lining -- my new appreciation for kind, good people!)

 

 

 

[Adagiooo]

Welcome RivkaE, you're in the right place for information support and encouragement. The staff of this site is very knowledgeable and the people who post here are friendly and empathetic.

 

This may not be the encouragement you are looking for but I would say you are off of the drugs that were making you so sick...that's a big plus. Many of us at SA are still fighting our way off of the poison and some of us are on multiple drugs. So even though you were forced to cold turkey and probably feel like crap (and have for a while) you no longer have to injest that which made you ill. I know it might seem like a small thing but you have no idea how traumatizing it is to HAVE to keep taking this stuff and slowly taper off.

 

I can relate to your suicidal feelings and all the agonizing that goes along with it. Instead of suicide you found your way here...hold on.

 

I wish for you peace and healing and the ability to enjoy what sounds like a lovely family.

[Frustrated]

I feel for you. I was a preschool teacher and I am now on disability. Leaving my house is very hard because of chonic symptoms of withdrawal and pain. I am not sure how to find hope in all this suffering but I can relate to your situation. I could not work now if I was starving and destitute. Way too sick. I hope you find all the support you need here. Welcome.

[bluebalu86]

Hi Rivka

 

I wish you much success with your healing. What are your main symptoms right now?

[manymoretodays]

Welcome.  I pretty much cold turkeyed in Oct. 2014 from Escitalopram.  I honestly haven't had it as bad as yours sounds(oh but I have......I always minimize my own stuff) but mostly mentally stuck and homebound........frustrated and slow.......

 

Yes....symptoms?

And how is your hubby dealing?  It is just usually hard for others to "get" withdrawal from psych meds.

 

I generally still have a cry fest period every day.........

[Faithbarelysurviving]

All the best to you! Blessings

[RivkaE]

Well, I have what I sought!   Okay, it's a virtual community, but really, that is what I am seeking.

 

I should temper the "cold turkey" aspect with this by stating I am still on 1.5 mg of Klonopin as well as Ambien.   I went back on these as my symptoms radically shifted in March.  before then I was very happy to alive, although I was bedridden and could not do much --- even read. To Bluebalu:  current symptoms are primarily a cluster of neurological problems: profound insomnia, neuropathies of hands and feet, excessive thirst, shortness of breath. Still difficult to read: blurred vision, dry eye. Also, just extremely fatigued -- primarily because of lack of sleep.  And yes, the biggest symptom: who am I?   I really feel I have lost my sense of self.

 

Found a new doctor and am going today to check physical symptoms out. Good sign, for I wish now to get through this.  Psychologically, I am still depressed and sort of concurrently emotionally numb.  Got into a small argument with my husband and cried tears -- first in months!    Crying is a breakthrough!  To Frustrated: thank you for telling me about yourself.   I really think my depression began with my appointment to determine disability:  I know I needed it and am so relieved I have this safety-net, yet it is so hard to think of myself this way.  I was flying high professionally for a long time.  It is even difficult for me to watch TV and movies, for all I can think about is how well and competent everyone is compared to how I am (yes, I know they have problems too, but they are not on the couch all day!).

 

Had very kind words from a good friend yesterday, who told me my body is screaming to rest, and I should.  I have this massive overdue book project and I just can't do it now -- and I should stop trying.  The last ten years have just been, I feel, a series of serious blunders.  This is also the time I was over-medicated.  It is so hard to separate my own failings from the fact I was basically drugged.  Yet I also believe my own mind can help heal my body.  The problem is I find it hard to find myself nestled within it -- I gaze at my room in wonder, trying to remember how I had the energy and optimism to decorate it!

 

Manymoretodays:  Hubby is cracking a bit.  He could not sleep last night, and as I wrote, we argued.  He is now in the living room meditating.  I introduced him to this recently and he is much better than I am with it now.

 

I will end with a nice dream I had last night (for I sleep so badly it is very rare I have them).  I dreamed I was in California (my son is moving there next week) and a huge, old 1970's car pulled up.  I yelled to the driver -- I had one like that (a massive 1970's Bonneville I drove in the '80's).  The door swung open and they asked me in -- was like a van with many passengers.  Some knew me and were glad to see me.  A very garishly dressed tranvestite in the front seat said, "oh "Rivka" is my favorite client,"  "Client?" I said, in what way.  And then I remembered a series of good things done for me (none bearing resemblence to my actual life).   But I was the old me -- so happy for this person and the welcome I received.   Perhaps like coming onto this site.

 

Thank you all for writing me.  

[Petunia]

Welcome Rivka,

I'm glad you found us and feel our little virtual community is what you need. My life has also shrunk down to being lived from mainly one room of my house and I don't know how I would have survived without the support and understanding I've received here.

 

I particularly relate to what you wrote about the loss of a sense of self, in fact much of what you wrote, I could say about myself and are things I've experienced while trying to adjust to these circumstances. I've even had those same thoughts while trying to watch TV, its so difficult to lose control of our ability to maintain our own image of who we are in a world full of people who still have that ability.

 

There are some topics in the  Finding meaning  forum related to this.

 

Thank you for sharing your dream, its nice when we can find some meaning or inner guidance through our dreams, I think if we pay attention, our dreams have a lot more to tell us about ourselves than we could imagine.

 

It would be great if you would clarify your most recent drug history. What drug/s did your CT from 7 months ago?

 

Petunia.

 

[RivkaE]

Hi Petunia,

 

You have such a calm, rational voice -- a pleasure to hear from you.

 

In November I was on Paxil, Effexor, Trazadone, propanalol (beta blocker), Ambien and Klonopin.  For 14 months prior to this I had parkinsonism, blurry vision, increasing depression and therefore, increasing medication.  Went on sick leave in September 2013.  Also had out-of-control high blood pressure, but no one saw relationship to meds. 

 

Side note is that I told my boss about depression and he began harassing me.  Simply impossible work situation, that plunged me deeper into depression, meds, etc. etc.

 

Because I had throat-swelling when I tried to take meds, I had to go CT from all.  I was bedridden, could not read (blurred vision) but recovering nicely until March.  Then much energy returned and vision cleared. I began work on my (long overdue) book again, joined a gym as well as a Bhuddist Temple and began meditating.  NO drugs.  I did have some major issues with what I now know to call "disutonomia" - such as the high blood pressure (controlled) and severe reflux (never had it before), ever-present fatigue -- but I could make it out of bed for hours and my emotional outlook was good.

 

Then, major big-time plunge into depression in April - when I had to be "certified" for disability: for my sick leave ran out, and I was in no shape to return.  Then a multitude of symptoms.  Severe anxiety, insomnia, neuropathies of extremities, shortness of breath -- leading to a diagnosis of disautonomia.   I am stuggling with the notion I brought this on myself - OR  this is another phase of protracted withdrawal?   I am really unsure about this mind/body thing.  Of course, I blamed myself for everything - spiraling into a depression that was more intense than anything I had experienced since the years before 1992,

 

I am now on 1.5 mg of Klonopin and Ambien to sleep.  Helps, but I still never get more than 3-5 hours, and feel horrible next day.   I also started 7.5 mg of Mirtazipine (Remeron), which had helped in the past, but stopped four days ago as neuropathies got worse.   Good news is that depression is ebbing, don't know if this is a result of Mirtazipine, but I am going to try to ride this phase out without it.

 

I'l watch my depression.   I am coming to terms with the fact that even if my latest symptoms were very influenced by my mind -- they are very real, and I just have to ride them out.  I am also concerned about the depressive effects of Klonopin.

 

Right now, I am going to be nice to myself and listen to my body.  Do what I can do that is positive.  Try to temper the thoughts I brought this ALL on myself!

 

Thank you so much for writing.

[Petunia]

Hi Rivka,

After reading through your posts again, I'm concerned that you may be making your situation worse than it needs to be.

 

I'm still not completely understanding your recent drug history, specifically the dates when you started and stopped. But it sounds like you have been on these kinds of medications for a long time and now you are off them all, apart from the benzos.

 

I'm not sure how much of the information on this site you've read, but I will post some links I think may be helpful.

 

See: 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable. What is withdrawal syndrome?

 

I am now on 1.5 mg of Klonopin and Ambien to sleep.  Helps, but I still never get more than 3-5 hours, and feel horrible next day.   I also started 7.5 mg of Mirtazipine (Remeron), which had helped in the past, but stopped four days ago as neuropathies got worse. 

 

See: Sleep problems - that awful withdrawal insomnia - Surviving ...

 

You will recover, but it can take a while. Recovery will be supported best by stability and keeping the nervous system as free from stress and changes as possible. This means not stopping and starting drugs, like you may have been able to do previously. 

 

Now that your NS is sensitized by withdrawal, you may find that you are experiencing some rebound, interdose withdrawal from taking the Klonopin and Ambien at night. If you think this may be happening, You could start a topic for yourself in our benzo section where you will get some help with this.  Members-only benzo forum  Please would you add the Klonopin and Ambien to your signature. If you want to taper off the Klonopin, you will also get help with that there.

 

 

Right now, I am going to be nice to myself and listen to my body.  Do what I can do that is positive.  Try to temper the thoughts I brought this ALL on myself!

 

You most certainly didn't cause this, like all of us here, you did what you thought was best for your health, you trusted the advice from doctors and other professionals, believing you were doing the right thing. For a while, perhaps the medications were helpful. But these drugs haven't been studied long term and its only now the truth is starting to emerge that long term use of these kinds of medications leads to worse outcomes and that withdrawal can be a very real and serious concern.

 

I'd highly recommend reading Anatomy of an Epidemic by Robert Whitaker.

 

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover.  Especially read the topics pinned at the top.

 

Many people find  fish oil and magnesium helpful, see King of Supplements: Omega 3 Fatty Acids (Fish Oil) and Magnesium, Nature's Calcium Channel Blocker

 

I've posted links to a lot of information, so take your time reading through it all. When you have a better understanding of withdrawal and how to manage it, you will be able to make better choices to support recovery.

 

Petunia.

[RivkaE]

Dear Petunia,

 

You are so helpful and knowledgable!   I have read Whitaker -- excellent book which helps me to self-absolve my "sins."  I also do not fully understand "rebound, interdose withdrawal."    Do you mean that although the Klonopin helps in the very short term, iis it ultimately worsening the insomnia?  This is my guess and my therapist's belief. I also think the Ambien may be useless, but I am just so frantic at night.   I really have to start tapering the Klonopin, but I feel so fragile now.

 

This week I have been  officially diagnosed with dysautonomia (big surprise there!) and I think the anxiety -  which really sets in at @6pm might be a manifestation of the disruption in my sleep/wake cycle. I am also so afraid of the insomnia: it appeared just six weeks ago along with excessive thirst (was not aware of this until I read about dysautonomia -- just found myself for the first time in my life stocking the refridgerator with water bottles!), profound dry eye, and neuropathies of extremities. (I really think my going on disability in March triggered a major relapse of depression -- that's when my new symptoms began as well).

 

I stopped Mirtazipine four days ago.   Neuropathies immediately improved, but sadly, the glimmers of an undepressed me also faded.  Thirst and dry eye remain, and today I am very dizzy.

 

My biggest source of anxiety is a long-overdue book I was funded to write, and it is clear I will not be able to finish it.  (I have to go over these sentences repeatedly to correct all my errors, and I am just incapable of research now).   Basically I have lost my career and am dealing with this.

 

But good news:   I went to a "Zen Yoga" class yesterday and met a really nice guy who is newly disabled with arthritis and who also just went on disability.    We quite a bit about having chronic illness and exchanged numbers to talk more.    With the "disautonomia" diagnosis, I feel I can sidestep the whole "toxic reaction to antidepressants" thing, which I have found stigmatizing with new people.  Can wait now to tell whole story.  Also loved the yoga class!

 

Thank you so much for all the explanations and advice!   Hope this is helpful to others too.

[manymoretodays]

Very helpful thanks.

And that sounds refreshing........your answer to my question about your husband and how he is doing........that he went off to meditate(something you had enlightened him to).  And nice that you have all those years of marriage behind you for security now.......that even if he get's frustrated and doesn't get this part of your journey......that you have that additional security/support.

Condolences on your Parkinson's disease.......that can't be easy at all.

I am still working on the perfect "short form" description of what's wrong with me now.......for those days ahead when I try harder to get on out and do more connecting with people.  Nervous system health issues?  Maybe.......and the long story version.......maybe never or after a great deal of time.  All I know for now is I have to get "doing".......not so much thinking and taking it easy......tooo easy on myself.  Get a sense of pride back as to the basics......my home, myself including more consistent self care.  I mean it's been nice getting comfortable with far less maintenance......but........IDK........glad you are here to learn from as we go.......

 

Guess we should say........Happy 4th or Independence Day from psycho meds(almost)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[RivkaE]

Manymoretodays -

 

Thank you for your sympathetic post.  I think we share a lot of ideas about how to better cope --including more activity, for my couch is now getting uncomfortable from the constant weight of my body day and night!

 

  I want to clarify I do not have Parkinson's Disease -- but I did have "Parkinsonism:"  meaning full body-tremors (including eyes and head!), assymetrical hand tremors, loss of balance, brain fog, difficulty urinating, etc. etc.  Was being worked up for this and a brain tumor when I went into the acute phase of withdrawal brought on by cold turkey stoppage because of contact allergies in mouth and throat to meds.   Most of the symptoms I listed disappeared once I went off: clearly dopamine flow impeded by all the drugs (this also happened in 2009 with Wellbutrin).

 

As noted, my symptoms are much more centered on my autonomic nervous system.   I also think my profound anxiety and insomnia also center on my inability to complete a 10-year research project.   Of course, this is the ten years I was over-medicated, yet I am experiencing profound feelings of failure.  I could have done more during this time.   Yet I do have so many symptoms that are not explained by deep regrets -- ie vision still blurred,  severe GERD, neuropathies, difficulty urinating.  So hard to sort out.  I err on the side of blaming myself incessantly -- which is also part of the depression.   Interesting, for I tried going on Mirtazipine for sleep etc. and I actually felt some of my old confidence for a few days!   Yet had to go off because of worsening neurological symptoms.  Can't live with meds, not sure how to live without them!  

 

My husband and very close friends think I need to let go and move on from the project -- husband said today I am far more than it -- yes, I made some blunders I need not have (both in terms of how I set up the project and how I spent my time), but I was also coping with rolling episodes of major depression.  

[HopeNeeded]

Hi Rivka - I am sorry to hear about your struggles, but am inspired by the clear period you wrote about in your initial post. Do you mind elaborating on how you got to that place? How are you now? I have just became very aware of my weight gain over the past several months of going through all of this - I too am putting a lot of ware on my couch... I am too weak/dizzy/confused/foggy to exercise though... Have you experienced that at all?

 

One of the other major things we seem to have in common is the vision issues. Mine are horrible and unabating throughout this process... Feel free to pop over and see my into post to see if you can relate to any of my other symptoms. 

 

Hope you feel well!
 

xo

[RivkaE]

Hi Jaclyn,

 

Do you mean the 13 years (1992-2005) when I did not have depression?    I look back on it on wonder too!    Prior to that, my depression could be profound but episodic, and althoght I tried meds before 1992 (pre SSRI's), I could not tolerate them.   I think I was just an emotionally stronger person and I made it through episodes with counseling and youthful determination!  Interestingly, given the rest of your post, I had a good psychiatrist who told me to exercise with my first, classic  episode in 1975.   I began swimming regularly soon after this.  I began to swim in earnest witth my divorce in 1984 and did so until I began yoga in 2005.

 

I became very accomplished at yoga beginning in 2005 and continued until the Parkinsonism in spring 2014.  In fact, one of my first symptoms was falling for no good reason and losing many elements of my practice.

 

Once I had another very bad episode in 2005, the medical community had changed, and I was a firm believer in meds (for I was apparently "cured" by zoloft from 1989-1992 -- wonder drug, no problems stopping it).   Then the whole thing changed, with zoloft failing to work after only about 6 months, the addition of seroquel, (horrible side effects to that) and then the merry-go-round of drugs until I was on 6 different ones.   I had Parkinsonism in 2009 with Wellbutrin, but went off and did not take it as a warning.

 

As for excercise now -- I do try very hard to do it.  Not at the pace of before, for I am so full of neurologoical symptoms, it is hard.  I do swim when I can (maybe 2-3 times a month) and walk at least several times a week.   I went to a great Zen yoga class last week -- far more about relaxing than exercise, but I would like to try gentle yoga again.   I think it is imperative to excercise, but like you, I am in this couch mode!  New week begins today.  So my advice is to just get out and do even a little walk, even if it means turning back after five minutes (did that last week).  Baby steps.

 

I got a grand 5 hours sleep last night!  I have to take the train to my therapists, so I will walk today.  I love in NYC and now find the subways maddening, but I count them as excersise!  I will try and go to the gym afterwards too, if only to stationary bike for a bit.

 

Let me know what happens when you try to go out!

 

--Rivka