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Rosetta

Rosetta: CT May 2011 and too fast taper Feb 2017

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Rosetta

Hello, everyone.  I'm in a wave with akathisia that is not too bad.  No SI for example.  My teeth hurt, my arms are tight, elbows ache, cheeks, neck, shoulders ache and are tight. I am wound up tight.  I have had several nights of waking up in a panic and a few day mares while I am up in the night awake -- imagining a terrible occurrence and having it feel real.   Yesterday, I had cramps and diarrhea.  

 

It was a hard day.  We tried to go to a palace that is about 45 minutes by train outside the city.  Getting on the train was quite difficult.  It was very hard to figure out which train to take.  Finally, we found it.  It was a nice ride out.  We saw a preserve with many deer in it and even a boar.  It rained.  So, we only ate lunch out there and went home.  My husband was in a terrible mood, and I inhaled a tiny piece of meat into my trachea at lunch.  That was an ordeal.  I have had that happen before when I thought I would die, but this time it was just very hard to get the piece out.  I'm still not sure which way it went.  By the end of lunch we decided the trip to the palace was out of the question.  The good news is that several months ago that experience would have resulted in a horrendous panic attack, but it did not!!  My brain is able to differentiate between life threatening and non- life threatening occurrences .  The physical response is not fight or flight.  I kept my cool even when I initially started to panic, and I coughed for what seemed like for ever until I finally got the piece out.  I didn't feel a surreal, bizarre feeling of derealization after the threat passed either.  It was all very different than it has been for many, many years when my body has reacted to a threat -- real or imagined.  I attribute this to the fact that my brain is not sending out the wrong signals and my body is not producing the same amount of adrenaline at these times.  The hormones that calm me down are there to let my brain operate with more logical, rational thought.  I can't remember the word for that hormone.  I am still having a lot of trouble with recall and learning.

 

I am tired.  Living here is very hard.  I feel I am just existing, but I know I am not.  Having this class to go to 5 days a week is very good for me.  I am struggling with all the different foods, having no clothes dryer, being unable to do anything by myself, and feeling the hostility of the locals here.  Many of them are not just unfriendly but even ugly when we are trying to buy something.  There are some very nice people, too.  It makes me realize how hard it is for people who immigrate to my country.  I knew it was hard, but it was abstract to me.  This is exhausting.  I keep trying to figure out what I can do without to avoid the confrontation.  I know I am going home.  I can't imagine how depressing this would be if I knew I was trapped here.

 

We have had some nice experiences, too   Very kind shopkeepers who want to help and who smile.  People who comment on how cute my daughter is, etc.  I suppose it's harder to remember those times.  

 

I know I am very lucky to be healing.  To not feel under siege at all times is wonderful even when my whole jaw is aching.

 

 

I have been able to go to my daughter's school every morning for over two weeks, and I have made it to class every day for two weeks.  As bad as I feel sometimes, I know that I'm doing ok if I can get up, get out and do these things every day.  

 

I will be so happy when my hormones don't interact with prolonged withdrawal syndrome any longer!!!

 

I think I have had one wave of anxiety since we have been here, and now this wave of muscle tension.  I think the first wave was probably during ovulation and this one is during menses although I am not having a real period this time. Not yet.  The last time I had anything like it was at the end of August.

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Guilietta

Dear Rosetta,

 

Thank you for keeping us in the loops. I am sorry that yesterday was a tough day. Being around people with bad moods adds to the stress and anxiety of so many unknowns (which train to take, etc. ,etc.) - on top of the usual stressors during the week. You did really well though - as you mentioned - you may have had a panic attack months ago and yesterday - you didn't. Look what you ahve learned in the past few months.

 

And on the positive side - you learned what trains to take, etc. the next time to travel to the palace. I don't know how much of a planner you are for expeditions (this could be an expedition for me!) - but I find that planning (as best as I can and withiout going overboard) minimizes anxiety. It helps to visualize this. Another concept is that I should do things with the expectation to learn (so I've been advised in CBT counseling). This way - when things are disappointing - it is not a real downer.

 

You are doing so well. You've stepped into a different culture - everything from food, to laundry, to schooling your daughter, my gosh, what accomplishments!

 

To help me remember all the positives - it helps me write them down in my gratitude book at the end of the day. To be honest, I don't always do this for one reason or another - but I do make a mental note during the day. Writing things down lets you look when  you need a reminder.

 

What a great experience. What personal growth.

 

Guilietta

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FarmGirlWorks
On 9/22/2019 at 2:44 AM, Rosetta said:

I will be so happy when my hormones don't interact with prolonged withdrawal syndrome any longer!!!

 

I think I have had one wave of anxiety since we have been here, and now this wave of muscle tension.  I think the first wave was probably during ovulation and this one is during menses although I am not having a real period this time. Not yet.  The last time I had anything like it was at the end of August.

Hi @Rosetta agree with you 101% on hormones no longer exacberating WD. I had a light period last month then two weeks later a regular one. So strange this change.

 

Interesting your observations about immigration and living in another country. I am traveling to Germany/Poland (with my newfound fio-father) in November and *crave* being in a foreign land. I too am having anxiety and just took an Epsom salt bath and powdered magnesium. Haven't done that in at least a couple months. Anyways, enjoyed your post, thanks.

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Guilietta

Hello Rosetta,

 

Just popping by to let you know I am thinking of you and I hope you are doing well. :)

 

Giuilietta

 

 

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Rosetta

I'm just coming out of a long wave.  It was about 2 weeks long.  I'm not sure it's over yet.  I had a real period.  It started about one week ago -- sort of -- but I think the wave was a part of it.  So, two weeks of feeling bad.  I stopped going everyday to my daughter's school last week.  It was too much.  I took her on Monday, and one other day my husband went with me.  

 

I did make it to my class every day.  I had about two nights with bad insomnia, several nights of waking in a panic and then having a deep depression set in.  I had SI a few times.  I had akathisia.  My hormones are still too much for my nervous system to handle.

 

I'm taking a week off school.  I will have three mini lessons this week.  It is very hard to eat here.  I have lost weight despite being in a wave.  I thought I usually gained weight in a wave.  When I have school from 1-5 pm, I can't have full meals.  The restaurants open at 1:00 for lunch and close from about 4-8 pm.  My kitchen isn't useful for me to cook much.  There is an oven, but nothing that can go in it.  We move to a different place in 3 weeks.  Hopefully, it will be better.  Not that I'm very good at cooking.  I had always hoped to be, but it's very hard in a wave.  My muscles do not work well.  I burn myself, drop things, make mistakes.  I usually burn the food.  I can't focus or keep track of what I'm doing.

 

I'm very tired.  It has been almost 2 years 8 months since I quit Zoloft.  There has been a lot of healing.  That is very clear.  I know I will get over this, but I'm so tired.  Of course, prolonged withdrawal has been going on a long, long time.  It started getting bad in 2004, I think.  I had been on Celexa for about 3-4 years by then.  

 

The good news is that meltdowns are few and far between now.  They are much more mild.  I felt one on Tuesday, Oct 1st.  I spilled something on the couch.  My daughter had just left for school and I sat down with my decaf to get through the morning with mild akathisia.  I had to get up and clean the cushion cover, and cried and cried.  Trying to just get through the day is so hard sometimes.  The thought of trying to do anything extra is overwhelming.  I try to remember that some people have much more serious illnesses and I am lucky.  I'm going to get well.

 

 

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Guilietta

Dear Rosetta,

 

I have been thinking of you and wondering how you are doing in Spain.  I printed your post to me and have it on my desk.

 

I am sorry you are tired and the past few days have been so difficult if I understand your post. There is a lot there to comprehend and more than my short term memory can handle. ;)  Nice you are getting a new place to live in 3 weeks perhaps with a better oven! 

 

On 10/6/2019 at 4:51 AM, Rosetta said:

The thought of trying to do anything extra is overwhelming.  I try to remember that some people have much more serious illnesses and I am lucky.  I'm going to get well.

 

I feel the same way about other people having things worse than I do - and that I will get better. You have come a very long way - and remembered it in great detail.

 

The undone things and paperwork staring me in the face is overwhelming and I don't know where to begin. Do you ever feel like that? What helps you? I try to make a running list (so I have a mind-dump and don't worry about forgetting anything)  - and try to get 1 goal a day completed.  It doesn't always work out but I try :)

 

I am still pooping along on my liquid. What I have in my blood (3 hours post-dosing) is 'undetectable' - anywhere from 0 to 5 ng/mL... 🤭

 

Thinking of you and hope your weather is fine. Getting cold here and some nice foliage this year.

 

Giuilietta 🤗

 

 

 

 

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Rosetta

Two Years, Eight Months since rapid taper!!!

 

Still feeling crummy.  Not in pain.  I am awakened 2-3 times a night in a panic and a deep depression after the panic wears off.  Bad morning wake ups.  They are not as bad as a year ago.  There is no electric shock to my heart.  The fear wears off quickly.  Then I feel depleted, and I want to stay home.  I wish I could take naps, but I'm too alert in the day yet I feel so tired.  

 

I went to pick my daughter up from school by myself today.  By about 11:00 am I am functional, and that is a vast improvement over a year ago.  The dystonia continues to get better.  Sometimes I forget I ever had it.  Other times it's very annoying, but rarely painful.  I long for the day I sleep through the night.  At least I continue to improve as to all symptoms.  

 

It's been two years, 8 months since the last zoloft, trazodone, xanax.  Crazy how long this takes, but I'm happy to be so far out and seeing continuing improvement.  I am still amazed that I survived -- truly amazed.

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Guilietta

Hello Rosetta,

 

Sorry about your sleep troubles, awakening in panic, tough mornings and not being able to take naps during the day.

 

3 hours ago, Rosetta said:

I am awakened 2-3 times a night in a panic

 

This is terrible! I am so sorry!  How many nights does this happen? I may wake up with tremors - but (knock on wood) it as become less of an issue.

 

One thing I have found that helps me to relax or fall asleep when I am so restless, anxious, uncomfortable,  hyperalert, etc. is to get under my weighted blanket. It helps tremendously. @Carmie mentioned having one too and how much she loves it. Do you have one? 

 

Getting off the 3 drugs is an accomplishment. It was a very hard thing to do. ;)

 

Hugs to you,

 

Giuilietta

 

 

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neroli

Hello Rosetta

 

Thank you for your kind and supportive message on my thread.

 

I hope you are doing ok - I just haven't had the oomph to keep up with people.

 

Things are getting tougher but I am keeping in mind that they can get better and ultimately healing will happen.  Just getting through the now is enough of a challenge.

 

much love

 

Neroli 💜

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FarmGirlWorks
On 10/11/2019 at 12:56 PM, Rosetta said:

It's been two years, 8 months since the last zoloft, trazodone, xanax.  Crazy how long this takes, but I'm happy to be so far out and seeing continuing improvement.  I am still amazed that I survived -- truly amazed.

Right behind you! Of course, "only" Zoloft (still hating Pfizer hard) but we are so much better than last year. I am so happy that you are marking the changes even if not there yet.

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Rosetta

Yes, FGW, we are still here!!!!!  @FarmGirlWorks Neroli, thank you for expending the energy to stop by. @neroli  @Guilietta Thanks.  Sometimes the hard nights let up.  Right now, I'm still having hard nights, but, in general, the days are much, much better than they used to be.  I feel like I'm in a horror film at night sometimes, and when I wake up in the morning sometimes, too.  Once the morning anxiety wears off I'm quite functional.  If I have several nights in row like that it's really hard.  I don't know of any way to change it.  

 

I am still suffering far too much from this iatrogenic injury.  I still have akathisia at times.  The hormonal fluctuations seem to make this syndrome so much more difficult.  I feel very strongly that ovulation and menstruation are my worst of the month.  Ovulation is easier. Lately, I have been waking up with hot flashes in the night, and afterward I am freezing cold for a while.  I don't have chills.  I'm just very cold. 

 

I feel quite depressed in the night, and I sometimes feel SI.  The hardest part of this phase is waking up afraid and desperately sad.Usually'm at that time, I'm thinking about my cat.  We left her with a housesitter.  She seems to have disappeared on day one.  She never appears on the security camera.  I feel so awful about her.  I feel that she may have felt abandoned.  Something eats her food every day.  I'm still holding out hope, but it makes no sense that she is never on the camera because that spot is where she used to sit in the sun.  The degree of grief I feel in the night when I wake up is very intense.  I think I'm attaching it to the cat's disappearance because it's so strong.  I think I would attach it to something else if she hadn't disappeared.

 

Despite it all I'm very grateful that my days are more or less normal.  Once in a while I feel pretty bad in the day, but it goes away.  Knowing it will go away is a comfort.  That gets me through.  In the past I didn't have that knowledge.  I felt it would never end.  I still feel depressed that it will come back, but I try to put that out of my mind.  Akathisi is the hardest thing I have to endure in the day, but it's mild compared to before.  I

 

It's very rare that I have tinnitus, cry uncontrollably, feel SI, yell, etc.  My hair still falls out, but less is falling out than before.  Sometimes I'm very hungry, but that's rare.  It's more common that I have no appetite, but even that is fading.  Dystonia is rare, but muscle tension still happens on my right side in my neck and in my leg mostly.  It's very rare that I have numbness or pins and needles.  I used to have that on my nose and all across my face, ear, eye, neck, chest and even down my arm and my fingers.  Now it's more localized around the neck and ear.

 

It gets better for sure.  Better and better.  

 

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wantrelief

Hi Rosetta - I am so happy you have noticed how much better things are getting.  Even symptoms you struggle with sound much less intense than they were before.  I have been thinking about you and am so pleased for the improvements you are experiencing!  💗WR.

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neroli

Hello Rosetta

 

Thank you for visiting my thread and again leaving a kind message.

 

It is good to hear that you are seeing improvements in your symptoms - you have come through such a lot.

 

You will see the day when you are free of these effects from the iatrogenic injury and will be whole and healthy.

 

I still think it is amazing that you have managed, and are coping with, the transition to Spain.  Strong woman.

 

Go you!

 

Neroli 💜

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Rabe

How long will you be there Rosetta?  I didnt know you were staying beyond September.  

Im so happy to read that you have some improvements amidst the symptoms.  I think about you so much!  Love and hugs my dear friend!!💜

Becky

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BB1979

Hey!   Just wanted to check in and see how things were? Still feeling ugh every dang day over here.  How are things now compared to a year ago?  At what percentage do you think you’re healed mentally? Physically?  I think I’m exactly a year behind you.  This is the hardest thing I’ve ever had to endure.  

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Guilietta

Dear Rosetta,

 

Glad your days sound like they may be overall better - although you may feel more depressed at night. I am more the opposite. LIke you said it goes away. ;)

 

When will you be coming back to the states?

 

Ovulation and days prior to menses are the worst - and even though they are past for me - they drove exacerbation in seizure activity. Fluctuations in hormones cause all sorts of complications. Did you hear if the expression that 'Women are God's joke on the universe'? A friend mentioned that to me years ago during a bad time and I still chuckle about it.

 

Your hair will come back. Mine has since after starting cymbalta. Funny - I asked every MD (including prescriber!) when it fell out in gobs in 2015 after starting cymbalta that they denied it. Of course all labs were within normal limitis.

 

I have been thinking of you - first chance to pop by. Remembering your support of me. 

 

Big hugs,

 

Giuilietta

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Rosetta

@Rabe  Yes, we are here for several months.  The good thing is that I have Spanish classes, and that gives me something to do besides worry.  Some days are too much for me.  Today was one.  I stayed home, and I needed to be alone, but I couldn't be.  I only had about an hour and a half completely alone.  Sometimes weekends are hard, but now I have 4 hours of class every weekday.  So I feel I never get a day that has enough alone time.  This has been hard for my daughter.  She needs a lot of extra support.  At least she has no homework here!  I'm tired though.

 

@Guilietta  Thank you for dropping by.  I left you a note on your thread.

 

@wantrelief So nice to see your note.  Thanks.

 

@BB1979 Hi.  Good to hear from you.  I have no idea about percentages.  That concept doesn't lend itself to this nightmare in my opinion.  I'm much better, and I'm still deeply unhappy with how many problems I still have, how much I have lost to these drugs, etc.  I was so very, very sick, like you, and while I'm grateful to be so much better, my life is still very difficult.  I have a lot of pain sometimes, and I have aches most of the time.  The deep depression in the night is very hard.  I just had SI a couple of times this week in the night.  That's how deep it is.  Today I had a very, very anxious experience in the shower.  It was all from exhaustion and having a big mess that I felt completely overwhelmed.  I'm so tired.  I don't try to figure out how much I have healed or any of that because it upsets me.  I try to just take it day by day and week by week.  So, I can't think in terms of percentages.  

 

Yes, it's the hardest thing I have ever done.  Physically, I'm much more mobile and my legs work, they aren't full of lead, for example, but my joints ache, especially my elbows.  My knees hurt less than before.  So, I'm hopeful for my elbows.  My headaches are less intense.  I'm so happy about that.  The dystonia is less intense, too.  It's worst during my period.  It's almost non existent if I'm not on my period or ovulating, but it's still bad sometimes.  

 

I hope you are doing ok. BB.  I'll your thread soon.

 

Notes:  Did not sleep until about 2 am one night this week.  Can't sleep .past about 7:00 except that today I did sleep until 8:00.  I was able to take my daughter to a playdate yesterday after school.  I'm making it to class every day.  Still having problems with my digestion and bowels.  Very frustrated with that.  Always constipated!  Once in a while I have to have caffeinated tea.  I have up caffeinated coffee long ago.  Had a bad headache this week, but ibuprofen helped.  Very depressed at night usually.  That last couple of nights were better.  Today was very frustrating.  Had some anxiety that was worse than usual.  My appetite was good this week.  I've been somewhat irritable.  It's probably time for my period again!  

 

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Rabe

Hi Rosetta,

I didnt know you were going to be staying that long!  Can I ask why you are there for that amount of time?

Im sorry it has been hard, though I can understand it well.  I dont do well it totally new places...I just dont..and it takes me quite bit of time to adjust so I sure understand that and empathize with you.

Im glad you are keeping busy but it sounds as if it is a blessing somedays and not others which makes sense given the unpredictability of your symptoms.

Thinking about you lots, my dear friend, and hoping you have had some ok moments and parts of days.  Please take are of you!!!  Love and hugs to you Rosetta!💜 I have to say your strength is incredible!  I would not have been able to do what you are doing!  I know it is a challenge, but I hope you will give yourself a TON of credit for doing this!  You just continue to amaze me over and over!!  💜

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Rosetta

We are moving tomorrow, and we won't have internet at home for 2 months.  So, I won't be posting.  

 

I'm doing ok at the moment.  It's still very up and down, but the bad nights are not 'horrible' right now.  I am having hot flashes and night sweats every night -- sometimes 3 per nights.  The days are very manageable.  The nights are emotionally miserable.  I don't know what to change.  It gets better then worse better the worse.  S I is occasional.  It's so bizarre.  My mood is fine in the day if irritable some days.  I go to sleep at night and wake up at about 2:00 in Mental agony.  If my physical aches and pains are worse my mental state is better.  I have to keep hoping my nights will be normal someday.  Im lucky the days are so good.

 

Tomorrow we are having a little party for my daughter's friends.  I'm grateful I can function during the day.  Very grateful.  This is Despite lack of sleep some nights.  

 

Onward.

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Rosetta

@Rabe  Hi.  We are here because my husband has flexibility with his work and so my daughter can spend a whole semester at one school instead of switching mid stream.  She needed to learn Spanish.  So, here we are.  It's better for me than being at home - mostly.  It's hard, but anywhere is hard for me right now.  This has proved that to me.  My own brain is torturing me for a least an hour every night for about 2 weeks per month.  It's truly bizarre, but at least here I go to class everyday.  It's a wonderful distraction. I don't enjoy much of anything else unfortunately.  Sometimes I feel neutral.  That's nice.  Every so often I feel joy.  I never know when it will happen.  I feel the loss of enjoyment of being with my daughter even while she is right there in front of me, but today we laughed together.  So unexpected.  

 

 Hopefully, I will keep healing.  It's slow.  Akathi si  a is rare.  That's a huge relief.

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Guilietta

Hello @Rosetta

 

I will miss you over the next two months while you are without internet access. I think the latter can be a blessing. Your support means a lot to me and I know many, many others. I am thinking of you and sending positive thoughts as you continue to heal.  It's nice that the akathisi is rare.

 

You do get a ton of credit as @Rabe said for living abroad - setting up a household,  taking care of your family and taking classes - all while continuing to cope with WD symptoms.

 

Hugs,

 

Giuilietta

 

 

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