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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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Rabe

Im sorry I missed your last posts, Rosetta.  Hope these 2 months hold some good moments and special moments to tuck in your heart and bring back with you!  Take care of you!  Perhaps you will be able to check in somehow along the way.

In any case will be thinking about you!!  

Juset wanted to say you have been a do continue to heal!  My heavens!  You packed up and went to another country for all this time!  There was a time you could not cook or do laundry or pack a bag or sort things.  Your healing has, to me, been incredible!!  I know it has been slow for you and you would wish it to be here today, but I just know it is really there, especially theses last several months.  I am so happy you like your class and that overall your time there is going ok.  You are there with your daughter and your family and i think this is something she will remember always.  It still is unbelievable to me that you did this!!  You are incredible Rosetta!!  Love and hugs my hear friend!!💜

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Carmie

Hi Rosetta, 

 

I know you’re without internet for a little while, just wanted to let you know I’m thinking of you and this message will be waiting for you when you get back😃🧡

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Rosetta

Hi, everyone.  I’m back at home. Thanks to everyone who checked in.  I have been following your stories when I had a chance to use internet here and there. 

 

This isn’t a very uplifting post, but, objectively, I’m doing fine.  I did heal a lot during the last two months.  I don’t feel the emotion connected with that achievement.  I believe I will eventually.

 

 I had a wave at the end of December-beginning of January.  It was much more mild than previous waves.  I’m currently dealing with the depression I always experience after a wave.

 

Being home is difficult.  The change in routine is hard on me, and I’m lonely.

Being here feels pointless.  I miss having classes and tourist trips.  It’s reality.  I’m watching El Ministerio del Tiempo on Netflix to cope.

 

My cat disappeared while we were gone.  That has been very upsetting.  I feel intense guilt for leaving her with someone else here at the house, I miss her desperately, and this doesn’t feel like home without her.  I’m losing hope that I will find her.  My daughter cries over her loss.  It’s all very painful.  We had hoped she was nearby and would come home when she realized we were back.  It’s been a week.  I’m handing out flyers, checking with shelters, etc.  I’m visiting every neighbor, and now I’m casting the net further afield.

 

All in all WD is much less intense than before.  It’s been quite tolerable for the last 2 months.  I have not had a period in 2 months either.  That helps.  I have had milder waves each month that seemed to coincide with some physical markers of menses - headaches mostly as well as aches in my joints - left and right sides— that feel like inflammation.  The constant  physical issues continue on my right side.  Reading, using the phone to write (such as writing this post), and sleeping cause muscle tension, numbness and mild pain.  Still having intermittent sleep apnea — dystonia related I believe.

 

Added by edit:  Just in the last month I had a number of nights when I would wake in a panic in the night.  Sometimes more than once.  The crushing fear upon waking up for good has gone and has been replaced by a lesser, much more run of the mill anxiety.  Sometimes, I don’t have that anxiety at all.  (So amazing to finally see the light at the end of that tunnel!!) I still wake up in the middle of the night and worry, ruminate, feel neuro-emotions, etc far too often.  That comes and goes, but being awake in the night every night is a constant, and I think that’s a normal sleep pattern for my age.  I wish reading didn’t bother my muscles so much.  It’s so boring to be awake in the night and I tend to ruminate unless I can distract myself.  I don’t watch TV for fear I won’t be able to go back to sleep.

 

Im shocked that I remembered my password.  I guess I’m getting back to normal slowly but surely.  I can leave the house everyday to pick up my daughter.  Facing the clutter has not been fun, but the intense anxiety is almost completely gone.  I had a medium intensity anxiety and a mild akathisia type feeling in my limbs during the last wave.  Now to get through this ensuing depression and start to do household chores again.

 

Please send good vibes for my dear kitty.  I hope she is ok wherever she is.

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Gridley
4 minutes ago, Rosetta said:

I’m doing fine.

Bienvenido, Rosetta.  It's great to hear from you and to read about your improvements.  You really are doing so much better, even if you can't feel it.

 

I'm so sorry about your cat and hope she returns soon.  Good vibes sent, for sure.

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wantrelief

Rosetta!  I have been thinking about you.  I am heartened to read of your improvements.....it sounds like a lot of healing has been happening. 

 

I am really sorry to hear about your kitty and hope you find her.  Sending good vibes.

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Mic323

Hi @wantrelief how long did it usually take you to stabilise? Also did you notice any disturbance when switching to liquid citlopram?
 

I reinstated 7 weeks ago on 5mg Citlopram and stabilised but kept having odd waves for 2 days here and there increased too fast and knocked my CNS the last 4 weeks have been crazy sleep on and off can’t eat a great deal plus anxiety panic attacks. Staying on 5mg to hopefully stabilise but considering going back up to 20mg slowly where it worked well for 5 years but know I will have side effects going up. As not stable just yet.
 

all the best 

 

M

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wantrelief

Hi @Mic323 - I have answered you on your thread so we don't disrupt Rosetta's journal.

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FarmGirlWorks

@Rosetta, I know how stressful it is to have a cat disappear when you are gone...sending good good energy your cat's way and hope the way back presents itself. Welcome back and thanks for the update.

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Elyssa143

@Rosetta

I have been thinking about you lately! I came often to see your thread for updates but you were still out of town! I am glad to see so many improvements, how encouraging that is for you and all of us who follow you! I know its still hard to struggle as im 22 months and i still struggle but definitely improving just very slowly! I am very sorry to hear about your cat. :( that is heartbreaking I understand completely! But dont give up hope I had one cat go missing for a few months and randomly show back up. Sometimes someone will take them in and they cant get back out and then one day escape! Im putting out good vibes that he comes home and is safe. You said you still struggle with the depression is it as bad? Is it more situational or still chemical?  Do you still have the suicidal ideations? You said that it is much better and less intense? That is fantastic although i understand the discouragement when were more functional yet mentally we still struggle pretty bad. Looking forward to hearing back. Love and light your way. 

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Rosetta

Hi, Elyssa,

Thanks for visiting me.  I always get depressed after a wave.  It’s a part of the re-wiring for me.  I try to take it in stride as best I can.  I don’t think it’s situational, no.  Objectively, my life is fine if boring and pointless.  

 

Fortunately, the SI has been fairly mild lately and infrequent.  I can appreciate that it’s just my brain struggling with the changes.  It’s sad and upsetting when it’s happening, but I’m in no danger.  I know when my brain is lying to me.  How different this is than in the past!  I’m not just holding on thinking of my family and hoping the nightmare will end someday.  The nightmare has ended, and now I’m quite traumatized, but I’m still here.  

 

The fact that the cat isn’t here is very, very difficult for me.  I can barely stand it.  I had never been able to get her to use a litter box.  That was a constant concern, but she was always on the roof or the balcony.  I thought she was safe after 7 1/2 years of being indoor/outdoor.  Maybe I was wrong.  I feel horrible guilty, and I’m also missing her terribly.  Maybe she still out there, and she will come back.  I hope so.

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Elyssa143

@Rosetta that is wonderful to hear that the nightmare has passed now your just traumatized, although the being traumatized is awful in itself and i understand this 100%. I also understand that the depression is not situational, maybe i worded it wrong when i said it i think i ment is it more so because of the chemical feelings or being discouraged that you are not feeling better persay. Also the fact that the si has been so infrequent and you feel as though your not holding on anymore is such a wonderful thing. I have a hard time knowing what people mean when they say si? So i get this feeling of "wanting to die" or not wanting to do this anymore and then i have awful horrinle intrusive thoughts where my brain says life isnt worth it you should just kill yourself but if course this is nothing new and i know its chemical. When you say the nightmare has ended do you feel your through the worst of it now and your confident in your healing? I am definitely healing but it still so slow, scary and painful. Like i said i often have that feeling of not wanting to do this anymore, the uncomfortableness in my stomach that makes me feel like i want to die, the depression and hopelessness and awful intrusive thoughts and then the internal restlessness  "Akathisia". I do hope these will go sometime soon or atleast this year will bring more healing i look forward to being in a place where i no longer worry i wont make it or that im more confident in my healing. I still struggle and go up and down daily but i guess im still early. It breaks my heart that your so upset about your cat. I understand i love my dogs :(. Also the guilt that you feel especially since you werent in town. But its not your fault at all. Cats are funny and love to wander and get into stuff. I do pray she comes home!!! I am glad your back home as well💗🙏

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Rosetta

@Elyssa143 Yes, I think I’m through the worst part.  That is true.  We will see what happens when I have another period.  I would like to believe that “I’m out of the woods,” and to think that is possible is a wonderful feeling.  

 

It’s quite hard to believe I might have turned a corner.  Sometimes, I have a very strange sense that in some parallel universe I “didn’t make it.”  It’s really that unbelievable that I could have survived aka this ia.  (My phone doesn’t like that word; it refuses to let me use it.  I kid you not.  That why it is broken up that way.).  I am completely confident that I am healing and that I can handle anything that is coming up in this journey.  That said, I am afraid if another big wave, of course.

 

I understand your distinction — depression that is situational for a normal person vs. situational for a person in WD.  No, I’m not depressed because I’m discouraged that I have not healed enough at this point.  It’s “chemical” to a great extent mixed with some difficulty adjusting to being home.  There are some neuro-emotions, too, especially when I wake up in the night.  I’m not exercising, and I need to correct that pronto.

 

The fact that you know that SI is “chemical” is very, very fortunate, Elyssa.  If not for SA I would never have known.  I don’t think I would be here right now.  I like to hope that I would have survived somehow, but I simply could not have known that there was any hope that what I was feeling was not real.  Aka this ia was a concept completely unknown to me prior to finding SA.  I did not even conceive of it as a condition that would stop.  I thought what I was feeling was an integral part of the world; that I was experiencing reality and being terrified was justified.  I was furious that my husband did not see what I could see about the danger lurking everywhere.

 

Twenty-two months is a long time.  Don’t let arbitrary time milestones mess with your mind.  You won’t feel healed at the magic 24 month point.  Put that idea away.  However, it is very true that the third year brings a LOT of healing.  I had read that prior to my 2 year anniversary and, at the time, I could not IMAGINE being sick that long, but I was, and I made it through.  You will, too.  You won’t realize it when you cross the threshold.  You will realize it later.  A couple of months later.  I can look back and see that in just the last two months a weight has lifted.  I expect another wave, maybe even a bad one, but the constant, daily, anxiety has gone, more or less.  I’m not sure when it stopped being a daily burden and became a burden that I carried only during a wave.  Sometime in August or maybe July?  

 

(I’ll put that on your thread so that you can read it later if you need it.)

 

During September and October, the nightly misery of repetitive cortisol spikes coexisted with some fewer hours of daytime anxiety for a while.   Then, the torture of nighttime cortisol spikes took the place of daytime anxiety that lasted for hours, and the morning anxiety wore off enough to let me function after I got out of bed.  For a while I was relatively anxiety free after about 8:00 am, but I was so tired and traumatized by waking up in fear over and over again that I didn’t want to do much during the day.  I was still dreading bedtime because of the nighttime anxiety in November.  The last time I had a period was in October.  The nighttime cortisol spikes and menses seem to be linked.

 

For September and the first two weeks of October I had classes in the afternoon beginning at 1:00 pm.  Beginning about October 15 my classes began at 9 am and I walked to class which took about 15 minutes.  In November, my walk to class was 30 minutes because I had moved.  Then, I hyperextended my big toe when I slipped in the shower.  I think that was around Nov 15 maybe.  I couldn’t walk very well for about a week or two.  So, I used taxis.   After my toe healed enough, because I had moved, my walk to class was 45 minutes. I couldn’t use my toe and I had to walk in the side of my foot.  I think it’s possible that getting out to walk early in the morning everyday from mid-October helped in some way.   I saw a lot of healing in November and December, but the lack of a period could have been a big part of it, too.

 

I think you know you are going to be ok Elyssa.  Hang in there!  

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Elyssa143

Hey Rosetta,

Thank you so much for such a lengthy and wonderful reply I truly appreciate it. Along with your words of encouragement! I am so glad you are doing alot better this is so good to see! Im glad you can relate to the akasthsia (well not that you are suffering) but that someone understands the feeling.  My Akathisia has been pretty constant here lately im almost wondering if some layers are coming off and this is more prevalent now? It is soooo uncomfortable and then of course my brain automatically goes to suicide of course i dont want to die. Did yours last this far out too? And did your brain automatically go straight to that? This feeling scares me. I already have the awful intrusive si and thoughts about life not being worth it. I also get scared that im this far out and still feel like this, i get scared it means i wont make it or something.  My biggest fear is getting worse or not being able to handle it and giving up. Looking forward to hearing back. I sure hope your doing well today! Thank you!

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Rosetta

@Elyssa143 You are going to make it.  The same way you have made it this far — by holding on and taking it day by day.  Aka this ia lasted a long time for me — definitely I still had it pretty bad at 19 months off all medications.  SI, too.  It gets better gradually just like all the rest.  Someday it will be tolerable, but will still be scary because of the memory of when it was bad.

 

You are not going to get worse - you will feel that you have gotten worse when a wave comes, but when you come out of the wave the baseline will be better - even if you can’t feel that.  We only see improvement over several months.  Rarely can we see it in real time.  You will look back and say, Oh that’s when my baseline improved!  I don’t know why it appears this way to us.  Maybe it is the tricks our minds are playing.  I had to rely on my husbands observations and trust him that he could see improvements I couldn’t see.  When a particularly bad wave comes it feels like you have lost all ground and gone backwards.  The people around you may get discouraged, too, but this is the nature of the trajectory.  Everyone who has healed - even partially — can attest to that.

 

Yes, my brain creates SI when I have aka - over and over.  Exactly.  I didn’t want to die, but I had the SI anyway.  It’s very strange indeed isn’t it?

 

I understand completely that at 19 months you feel that it’s been too long and you won’t heal.  It is a ridiculous amount of time!  But you will heal.  Some people heal from CT much earlier than others.  I have had a long recovery, and it’s still going on, but I think mine has been a bit longer than average.

 

I know this is horrible, but you will get through it!

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Elyssa143

@Rosetta

Thank you so much for your kind words and awesome support. Your writing is quite amazing. So thorough and detailed. Your right I will make it, its just the fear my brain is and has been feeding me for almost two years. That has been my biggest fear. My brain constantly tells me ill get worse and will give up. Or itll play out some awful scenario. It really is awful, but maybe im getting a tad better at not allowing them to scare me as much? Hopefully anyway.  It is nice to have someone else who understands although i dont wish this on anyone. I m greatful for your constant support. I do wish there was some magic number where we got better. I also get this awful feeling of not wanting to do this anymore that really scares me too. Then my brain randomly freaks out about being in withdrawl and how much longer this will take. But honestly even though its still hell it is way less. I think i just get really discouraged it is still happening and i dont feel ok or mentally stable. But I am working on beign a bit more greatful. How are you today?

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