Jump to content
Rosetta

Rosetta: CT May 2011 and too fast taper Feb 2017

Recommended Posts

Rosetta

Thank you both @Mimi79 and @FarmGirlWorks

 

I have been through a rough patch this last week.  For many nights I did not sleep well, had many cortisol spikes, and felt terrible in the morning.  I have been in some pain, too, when I wake up after clenching my jaw, but it has not been too bad and did not last for hours.  


One night I had three strong cortisol spikes.  I often wake up with a cortisol spike, then comes a hot flash and afterward I get very, very cold.  I fall back asleep and it happens again.  After the third time, I am quite desperate.

 

The last three nights I have slept more.  I am still having the cortisol spikes.  I wake up in fear.  Immediately after I wake up in a panic I have a memory of a thing I have lost such as pictures of my daughter that had been texted to me, (I lost them when I lost my phone) or pictures that were emailed to me and my email account was corrupted.  I feel terribly sad at these times.


I don’t have SI after a cortisol spike the way I used to, but I do have the thought that life is not worth living.  If I think about that and challenge the thought I can see that life is worth living, but I cannot see that my life will be ever be happy.  After my day begins and I see the sun shining, have breakfast and the anxiety wears off I feel much better.  

 

There are still times in the days when I cannot trust my own mind.  I still get very confused, afraid and fixated on doing something or missing something important.  I get angry, too.  The next day I will be able to see that things were not quite as bad as I thought they were.  I realize at time that what I have been feeling is a lot like the way I felt as a teenager.  The next day I may feel like an adult, but during the time I am so worried I can’t recognize that my brain is betraying me.  I can see this only later.  It’s very, very frustrating.  The things I was worried about are still important to me, but I can understand that they are not as threatened as I thought they were.  It’s all very strange.  
 

I wish I could be the same person — a grown up — most of the time.  My period has a lot to do with these changes and swings. Now that I understand more about dystonia, I realize that injuries to the left side of the brain affect the right side of the body and that dystonia presents in the opposite side of the body from the side of the brain that was I continue to believe that my period is the reason for the rather consistent changes in my symptoms.  I am now aware that the hormones that increase during particular times of the month - estrogen — somehow make dystonia less severe.  Estrogen therapy is a possible treatment for dystonia.  Of course it comes with several risks including the risk of further destabilizing a fragile nervous system experiencing dysautonomia aka withdrawal.
 

I clearly have a frontal lobe issue.  I believe that dystonia interferes with my frontal lobe function, and that dystonia is worse when I have less estrogen available to my system.

 

I have several motor issues as well: dystonia, weakness, strange muscle twitches in my abdomen, and trouble using my eye and hand on the right side.  If I have any seizures they are so mild as to be undetectable to me, a layperson.  However, I have been reading about dystonia recently, and at times an MRI can detect changes that have to do with dystonia.
 

 When I had my MRI for my neck area due to the weakness and numbness in my arm, the technician had to run the MRI three times.  He said that I kept falling asleep.  I was not aware of that, but he seemed to think I was jerking when I fell asleep and this made the MRI useless.  Eventually, he had an image he could use.  The point of the MRI was to look for a nerve that was being compressed in my neck, not for imaging of my brain.  

 

If the dystonia doesn’t improve, I may ask for another MRI to see if there is any detectable brain change in the left side.  I’m not sure it will tell me anything or help me find a solution, but maybe I should think about seeing a neurologist.

 

Menopause is probably interacting with all of this, too.  I don’t have periods very often, but I know when the hormone changes occur because of the dystonia and cognition changes as well as mood changes.  Hot flashes, chills and sleep disturbances also trouble me.

 

I’m tired of this happening over and over again.  I’m so very tired.

 

 

Share this post


Link to post
Erell
15 hours ago, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

Sad to read this, but also so close to you, having the same feelings.

And this loneliness is a really hard part of WD, truly.    

 

Also very tired of this. But I also know that every time I feel a bit better I strongly think : well , life really worth it !

 

We will get there...and happy. ❤️

         

Share this post


Link to post
ShiningLight
On 6/13/2020 at 2:08 PM, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

 

 

 

Really, really relate. Wish I had a solution for it.

Share this post


Link to post
Sheera

@Rosetta on this other side of this wave is a beautiful ray of sunshine. You will see it soon, there is hope. Hugs, my friend. 
 

Sheera

Share this post


Link to post
Rosetta

Thank you @Erell @ShiningLight and @Sheera

 

I’m not doing any better.  I had about 3 nights of better sleep, and I thought I was on the way out of this wave.  I had one good day in between 2 horrible meltdown days.  Yesterday was very hard with intense anxiety all day.  The day before was not quite as bad as yesterday.  Last night I felt bad enough that I took Benadryl before bed.  This morning was so bad that I had SI.
 

I can’t be a parent when I feel this way.  Sometimes, I lose all feeling for everything (anhedonia).  Mostly, I feel very negative, irritable and worried.  I am just existing, waiting for this wave to pass.

 

I am losing hope that the waves will ever stop coming although I know they have to stop someday.  My cognitive function is very impaired.  I can’t interact with my husband and child without constant misunderstandings.  I’m back to the point that I feel that if I didn’t have a child I would not keep going.

 

All I can do is keep taking walks and avoiding possibilities for conflict.  I have to avoid trying to be a parent because I can’t deal with the normal reactions kids have to being told what to do.  My anxiety is so intense that I have avoid directing my daughter to do things or not to do things.  This is an option because only because my husband can do that, but it’s still less than ideal.

 

I feel very depressed and uncertain.  I can’t trust any of my emotions about anything.   

 

 

Share this post


Link to post
direstraits
On 6/13/2020 at 5:08 PM, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

I'm so sorry, I feel the same way.

I;ve been off these drugs for 6 years and still never feel normal.

It's a horrible situation.

my thoughts are with you..🤗

Share this post


Link to post
Rosetta

Thanks @direstraits

Share this post


Link to post
ShiningLight

Rosetta,

 

Do not be discouraged, warrior. Never forget: as abruptly as this 💩 comes on, so can it dissipate. Do not quit before the miracle!

 

You are even engaging in adaptive, creative coping by taking walks and having your partner interact with your daughter.

 

Courage is getting up and trying, moment after moment. You can be proud that you're doing that, and that's enough for now my friend.

Share this post


Link to post
wantrelief

I am so sorry this wave has persisted.  You've seen much better times so they will come again - keep hanging in there, my friend.  It is so so hard to keep at this but it will be worth it.  Thinking of you, WR. 💖

Share this post


Link to post
Sheera

@Rosetta This is not what I was hoping to hear when I checked in. But here is what I know—you are a warrior and you will get through this battle too. You have come so far and like @ShiningLight said the waves can come as quickly as they go. When this wave is over, your baseline will most likely be higher, an exciting and hopeful thought. Hugs to you, friend. 
 

Sheera

Share this post


Link to post
Mimi79

Hi dear Rosetta,

I totally agree with Sheera,  after very bad waves comes great windows and improvements.  I’ve observed this fact last month, during my worst wave. Until then, you have to hold on with courage, and I’m sure you will.

I hate those waves because they make us lose, in few hours, all our self confidence and hope. All becomes suddenly so dark and hopeless. 


But you are a brave and strong women, this is not the first wave you are facing. You know the beast. You will win over it, one step at a time.

 

You have helped so much people here, including me. You can’t imagine how much you have helped me! When waves hit, I reread the post you wrote on my thread and it brings my hope back.

 

Remember all those good moments you had in the past months. They will come back soon.


Good days are coming...
Take care of you. I send you big hugs! 🤗 

Mimi.

Share this post


Link to post
Rosetta

Thanks again @ShiningLight.  I am so grateful for all of you coming to my thread.  I feel so alone.  Thank you, @Sheera, @Mimi79 @wantrelief 


This is really hard.  My daughter asked me to smile today.  So, I did, and she said she could tell it was forced.  
 

I barely have a relationship with my husband now.  He stays away as much as possible. He still tries to be kind, but he waits until the afternoon.  If we do interact he’s apprehensive and uncomfortable or worse.  
 

I can barely go anywhere.  We have no friends at all.  He and I have no friends in common, not one.  We have old friends that we never see and haven’t seen in months or years.  He can’t even watch tv with me.  We used to have shows that we both liked.  Instead of coming out of a bad time stronger, we argue and yell a lot.  

 

It’s very hard for him to understand what I’m thinking when I’m having severe anxiety or akathisia.  He takes offense.  He feels personally affronted if I feel anxiety over anything he does.  He says that I don’t love him, and that we aren’t even friends.  He says he stays by me because of the person I used to be and because he knows I am not the real me, but he’s tired and angry.  He says he doesn’t understand why, if I can see what my anxiety is doing to him, why can’t I stop asking for things to be the way I need them to be to quell my anxiety.  All I know how to do is to stop existing.  I try to walk away, but I have no where to go.  My anxiety follows me.  
 

It’s impossible for him to approach me with compassion for more than a few minutes.  In fact, if he is not around, it’s easier for me to stay calm.  What he says and does when I’m upset ramps up the fear.  I keep trying to explain this to him, but it makes him so angry that we have a more difficult time.   I can’t ask for what I need from him.  
 

Sometimes, I try to discuss it with him when there is no crisis, and we work out a plan for what to do when there is a crisis.  I tell him what he said that escalated my feeling of being trapped and what I meant that he didn’t understand.  I explain to him that I wasn’t accusing him of anything; I was only feeling intense, irrational anxiety.  We talk it out calmly.  It appears his eyes have been opened.  He accepts that I wasn’t being critical of him, but that I was reacting to something inside my own mind.  We seem to come to an understanding, but when the moment comes it all falls apart.  Our plan doesn’t work.  He’s reacting the way he does because his father was someone who was unexpected angry, and everyone had to walk on eggshells around him.  My biological mother and my grandfather were the same way.  So, I think we are both reacting to that old threat instead of thinking clearly.  


What is so hard for me is that he can see the signs that I am anxious when I am completely calm and coping well, and those signs upset him.  I can’t win.  I can’t get any credit for coping, and it was the same way with my mother.  She wanted conflict, so if I was coping she kept pushing and pushing until I couldn’t cope any longer.  He doesn’t do that, but he gets upset when I am showing signs of anxiety.  When I drop things, when I mutter, when I look like I am one accident away from getting angry at inanimate objects, he gets upset, and he’s all ready primed for a crisis even if none occurs.  If one does occur, he finds it very difficult to be calm and see that I don’t blame him for what happened to me.  I can’t even have my own private meltdown alone in the kitchen due to a broken this or spilled that or burned hand without it ramping up the tension in the house.

 

I don’t blame him.  I used to before I understood what was happening to me. I couldn’t understand akathisia, of course.  It felt like he was hurting me when my senses were so raw and the slightest noise or even light caused me pain.  Even when I didn’t blame him it seemed that I did because he was there and I was feeling overwhelming sensations.  I knew it couldn’t be my child hurting me.  I don’t think I even understood that I was feeling pain.  It was something other than physical pain; it was something other than emotional pain.  I can’t describe it, but it was pain simply because that’s the only word I can find for it.  It was anxiety, but more than anxiety and more than anxiety mixed with pain.  From the outside I think it looks like anxiety and fear and anger, but those are simply the reactions to akathisia.  They are not akathisia.  In any event, he perceived my reaction as blaming him for what I was experiencing, and he still does although the “pain” I am feeling is, usually, merely anxiety now.  The stimulation of my senses by his actions and words, the tone of his voice, the pitch of his voice, the volume of his voice, even the fear and anxiety in his voice seem to escalate the intensity of my anxiety.  I think the same happens to him.  We feed it back and forth.  We can’t follow our plan for these moments.  I don’t know how to change that.

 

My daughter is sad and lonely and bored.  We can’t even send her to camp.  She can’t be with friends or with other adults who aren’t in the midst of a medical tragedy.  I try to do things with her.  We have been reading folklore and fairy tales and doing science experiments, but my anxiety makes that difficult.  My husband says she is trying to stay away from me.  She doesn’t want to go for a walk with me.  I have to force her.  She hides in her room.  She’s hiding from me.  It’s killing me.  I wish I had never been born.  I really do.

 

I have been worried about how this would affect her for 4 years now — four very important years for her — to her it’s her whole life.  She doesn’t remember all the fun we had when she was under 5.  How I wish someone could have stopped the pharmaceutical companies in the 1990s.  
 

It’s now been almost 20 years since I was prescribed Celexa.  When I think about the way I felt then and how I hoped Celexa would save my life, how depressed and suicidal I was then, it seemed so intense, but that was absolutely nothing compared to this.  My problems then were tied to real life issues like employment and monthly income and emotional abuse in the workplace.  Now, what is causes depression, anxiety and SI has nothing to do with any of those things.  It’s all in my head, and it’s relentless, and irrational.  I’m not even me.
 

 

Share this post


Link to post
Mimi79

Dear, dear Rosetta!
Be gentle to yourself. I know this dark place where you are, It’s so hard, but remember, during this time, your CNS is healing. 


I don’t know if you’re able to read books in this wave, but I’ve just read the Baylissa Frederick’s book, « Hope in my hart ». She did a diary of her Benzo WD. Her WD last numerous years. This book gave me a lot of hope. In hard times, she kept saying to herself « The usual outcome for WD is recovery ». This is my new mantra.
 

I can relate with the fears you have about your daughter. I’m having the same issue with my two girls (10 and 14). When I’m in a wave, I see in their eyes that they don’t understand why mummy is so changed. So I explain to them that I’m starting a tough journey to free myself from ADs and the reason I’m doing this. They can understand. And don’t forget, whatever you do, your daughter will always love you unconditionally because you are her mother.

 

When I’m feeling bad, I’m happy to let my daughters go outside play with their friends in the neighborhood. I know we are in a pandemic, but I had to choose between my mental health and the mental health of my daughters, and the risk of having Covid19. And I found mental health was more important. I told to my daughters to be careful and keep distance with friends, and until now, no problems and no Covid. It’s good for my daughters to socialize with friends and it gives me some relief. It removes some pressure on my shoulders.
Of course, everyone should go at its own speed. 

 

I wish that you will feel better soon. Nurture yourself, make things that help you relax. Don’t expect the future, you’ll cross the bridge when you’ll arrive to the river.  Don’t put too much pressure on yourself. 


Take care 🤗

Share this post


Link to post
Rosetta

Thank you, @Mimi79  Today was better.  I did very little, but I did take a shower.

Share this post


Link to post
Mimi79

Good to hear! Small steps, it’s ok!

I’m starting a wave me too. How discouraging it is after 5 very good weeks. I will try to ride it as best as I can...

have a nice week-end...

Mimi

Share this post


Link to post
ShiningLight

Rosetta,

 

This sounds extremely painful. Do you go to couples, family, or even parent/child therapy? Maybe that could help the family cohesiveness.

 

It also seems likely that your daughter is aware of hubby's and your interaction problems which is causing her to align with him, and in a child's uncomplicated way see you as the bad guy. In other words it's not all coming from your daughter. She's picking up on and mirroring your husband's feelings about what's going on.

 

I'm single and alone and this way is painful too. Somehow in this life there's always pain.

 

I hope your day is a little brighter today

Share this post


Link to post
Rosetta

I’m still having dystonia if I use my right hand to type or if I read.  I’m still having cortisol spikes in the morning.  They are less intense.  


I’m still anxious, but there have been no meltdowns.  I feel depressed and unmotivated.  I did manage to buy a Father’s Day gift last week.

 

@ShiningLight  No, we don’t go to therapy.  Thanks for the suggestion, but I don’t think that a therapist would understand what’s happening to me.  It would be money down the drain - a lot of money down the drain.  I don’t think it’s the therapists’ fault, but they can’t help people if they don’t know what is wrong, and they can’t believe that the problem is PAWS. 
 

I tried therapy over and over, but it didn’t help, and now I know why: WD prevents me from making any progress.  My brain isn’t rational.  It’s jumping around from one thing to another.  Anxiety comes, anxiety goes.  For years, I could not remember enough to make anything I learned work.  With every change of medication I got worse.  I’m not even the same person from day to day when I’m in a long, hard wave.  I couldn’t see spending that money when we could spend it on sending my daughter to camp in the Summer so that she could have time away from me.  Now we don’t have that option, of course.
 

If I found a therapist who had been through WD maybe therapy would be useful.  My poor husband needs a therapist who understands this syndrome, I know that.  I’m not hopeful we would ever find one.  Maybe I could find a book for him.
 

My daughter doesn’t know what to think.  My husband is affectionate and kind to me even the very afternoon after I have had a bad morning, and we have argued.  She sees that.  She usually gives me a hug soon after everything has calmed down.  It kills me that she sees our dysfunction, but it’s good that she sees we still love each other on the same day.  I think anyone who believes they are hiding it from their children by not even talking to each other is fooling themselves. Not to mention, there’s no way to keep anything from her when it’s just the three of us with no school and zero time alone.  We have tried, and that makes her very upset.  I just have to keep trying to arrange my life in a way that the impact on her is lessened, but this coronavirus has scuttled our options.  She has no camp.
 

My emotions are all over the board.  I go from interested in something to anhedonic in one day, from curious or excited about doing something to incapable of even cooking in one day, from etc., etc., .etc.   Throughout the month my personality changes.  I’m trying to track it, but it isn’t very consistent at least not in a way that allows me to plan for it. The stress is building.  
 

I’m back to having no appetite, feeling anxious about doing laundry, feeling overwhelmed by the clutter, but having moments when I want to create an original LEGO set for my daughter.  I know I won’t be able to follow through.  I bought a bunch of pieces to make something a couple of months ago, but I haven’t been able to get the final few pieces to make it work.  I haven’t been able to focus, and my creativity had been dead.  I think I could find work arounds for the missing pieces if  I could come out of this wave.

 

My house is getting even more out of control.  I keep trying to get up the courage to tackle even one small part.  Fifteen or twenty minutes of sorting exhausts me and makes a meltdown more likely.   That’s the real danger.  So, I don’t even start.  
 

My plan to put everything in bins and then sort through the bins is still there in my head.  I think it could work if I could quell the anxiety long enough to get it all in bins.  When I’m putting it in the bins, I start to panic that certain things will be lost forever if I just dump all sorts of things into one bin. I start to try to sort them between more important and less important, and then the plan goes off the rails.  Often, I simply create a bigger mess.
 

This is my life.  I have to make the best of it.  I used to do that by going somewhere away from all the clutter where my mind felt more clear.  I can still go to the park.  Anywhere that other people have organized (or not) feels better to me.  Even if there is a mess, it’s their mess, not mine.  
 

Even my own yard feels uncomfortable.  There is always something that needs to be taken care of.  I have projects all over the place half done.  When I was on high doses of Zoloft, I had a lot of creativity.  I still remember the projects, and I have some of the materials.  There are many things I could do this Summer if I could get through this wave and another would not come along, but I know another will come.  
 

Share this post


Link to post
ShiningLight

I understand your disinterest in seeing a therapist. I found that therapy was not very helpful to me when I tried it when my symptoms were acute and severe. For the same reasons that you state--the therapist didn't understand and kept trying to "help" me process things deeply, when what I needed was here and now support. It was NOT helpful! In fact it was approaching harmful, since I had to keep educating her on what was going on with me and what I needed. I ended up firing her and I don't regret it.   

 

I was thinking that what a therapist may be able to help with in your situation is addressing communication, adjustment, and compensation for the impact of your symptoms on the family system. I don't think the therapist has to understand or agree with the cause of the symptoms in order to do that. However, it would take an exceptionally skilled family or couples therapist, probably someone with expertise in helping families adjust to the changing impact of medical conditions/brain injuries.  I totally understand if that doesn't feel worthwhile to pursue.  

 

I have found support, fellowship, and understanding in a local support group for people recovering from brain injury, because of course that's what this is. They have separate programs for people with mild and moderate injuries. I'm the only person there with iatrogenic brain injury, but they accept me. Maybe looking for some local supports for people with brain injury would be helpful. 

 

I hope it isn't bothering you that I am offering some ideas. You describe the pain so articulately. I wish that I could offer something that would help lessen it. I keep feeling that support of some kind might help, and I believe that you deserve more of it. I see it as an injustice that you don't have it.

Share this post


Link to post
Sheera

@Rosetta We have had the same exact situations within our family dynamic as well, Rosetta and it is terrible. The up and down mood swings from hour to hour and the intense emotions and lack of them is so difficult. I don’t know if this is helpful but I just recently started to feel motivated again. I got about halfway through a project and then entered a wave. I pushed through to completion but it made me angry to not be able to enjoy the whole thing. It was a creative project that felt like such a chore at the end. This is hard work. I know you will make it to the next window. Your brain is healing and the next one will be the best yet. Also, Covid is just making all of this worse and even though it feels like it will last forever, it won’t. You will be healed and free. ❤️ Hugs to you, friend.  

Share this post


Link to post
Rosetta

@ShiningLight It’s very kind of you to offer suggestions.  I really appreciate it.  Yes, if there were a couples’ therapist who could help with communication that would be nice.  I never thought about a support group for brain injuries.  Good idea.  Thanks for trying to help.  It is always good to see that someone else cares.  That alone is sometimes enough to push through.
 

@Sheera  I’m sorry you are dealing with the same issue.  It’s so demoralizing.  Good for you getting the project done.  I’m glad you could.  Thanks for your support.  It makes me feel less lonely and sad.  It really does.  

 

Share this post


Link to post
FarmGirlWorks
On 6/21/2020 at 9:49 AM, Rosetta said:

My house is getting even more out of control.  I keep trying to get up the courage to tackle even one small part.  Fifteen or twenty minutes of sorting exhausts me and makes a meltdown more likely.   That’s the real danger.  So, I don’t even start.

So hear you on this, @Rosetta. My place was much, much cleaner and organized when I was on Zoloft (and smoking pot). Ironic. I did a lot of cleaning last Wednesday and wore myself out to the point that I could barely move for two days. Then I went into a wave. It's less intense though and I pray that it ends soon.

 

And I hear you on therapy. I have one now for a specific situation unrelated to WD but the two therapists I tried last year were useless. It's chemical and one needs a bit of stability to be able to make use of it. And yeah: it is a pricey venture so we want it to "work." I think you're making all the right choices here. Maybe there is a brain injury support group online?

 

👊❤️👊

Share this post


Link to post
Rosetta

Thanks for stopping by @wantrelief  That’s kind of you.  Yes, perhaps there is one.

 

I’m feeling better.  I really need to be off this roller coaster.  I feel that I have no control.  Even when I feel better I know it won’t last.  I’m trying to enjoy this time anyway.

Share this post


Link to post
Erell

Dear Rosetta, 

 

don't know how but I missed your post on  my thread !
So funny that you dream in French ! I thought I would dream in English after spending months on SA, but didn't happen :)

Wow, you did travel in many French region !
 

I'm glad to read you're feeling better ❤️ 

And understand being tired of this rollercoaster ! It really feels like it will never end.

 

Something I love about Success stories : people who went through WD and healed often say that they didn't think they would heal either. While going through intense windows and waves, they were convinced they would never heal. And guess what ? Years later, they are writing a success story ! ❤️

It seems that everydoby does heal.

 

Hang on, our reward is coming !

 

 

Share this post


Link to post
Elyssa143

@Rosetta

just a quick pop in I was thinking of u as I was researching my deficiencies. Come to find out I’m pretty deficient in COq10 plus many others. Come to find out it’s one of the things that are severely depleted due to meds and our poopy lifestyle not something drs test. I paid a lot of money for the spectracell test. But I’m telling you because you struggle with dystonia and that’s listed as one of the number one deficiency symptoms. Who knows maybe it could help? I’m just throwing it out there. I hope your doing better. I was doing better before this last wave and as always scared about the suicidal intrusive thoughts, feelings and Akathisia. I’m 28 months into this and 2 years completely off all meds even over the counter. Really hoping that stuff lets up here soon. Slowly working on some of my deficiencies hoping that helps too. Hugs to you

Share this post


Link to post
Rosetta

I’m all right.  Not great, but all right.  I’m still having cortisol awakenings around 2:30 am.  I was up until 5:30 this morning. I’ve been awake since 7:50 because my phone rang.  
 

I feel pretty down.  We spent a week at my MILs, and I felt better there.  Now we are home again.  I’m surrounded by clutter.  It’s difficult.  Maybe I can take some baby steps to fix it, but I’m very busy with my daughter when I have any energy to do anything.

Share this post


Link to post
Rosetta

@Elyssa143 @Erell @FarmGirlWorks

 

Thank you for stopping by.  It’s so nice to get a little comment.  It’s like getting mail.

 

Two nights ago I had very bad dystonia that was painful in my right temple and jaw.  I used a heating pad to fall asleep.  That hasn’t happened in a while. Two nights prior to that I had slept until 5:00 am for two nights in a row!  (Instead of waking around 2:30 or 3 and being up until 5 or 5:30.) That was nice.  Then I had a night of waking around 3 and being up until 5.  The next night I woke around 3:00, and I didn’t sleep again until the next night.  Tonight is another night of waking at 3:30.  It’s now 4:15 am.  
 

I have had clumsiness and flashes of anger recently, too.  Otherwise, I’m not doing too poorly most of the time.  I have moments of deep sadness that pass and moments of anxiety that pass.

 

I’m trying to walk and exercise to improve my sleep.  I’m trying to eat better.  During the last wave I wasn’t walking much or eating well.  I was just holding on.  I had a lot of anxiety during that wave, poor sleep, hot flashes and sweating at night, flashes of anger, meltdowns, and lethargy.  


Right now, I’m doing better.  I just wish it could last.  I wish this could be over.  My life is sad due to the knowledge that another wave will come, and I’ll have anxiety again that affects my daughter and husband.  It’s hard to enjoy this calm time when I know my brain will hijack my life again.  I’m trying though, and I’m very grateful for this time.

 

 

Share this post


Link to post
Elyssa143

@Rosetta

good to hear from you. I’m glad you are better. Have certain things improved for you? I understand the fear of when the other shoe will drop I understand feeling like it’ll never end and it’s awful :( I have easier times and times where I’m definitely more positive and I function better. But I still suffer with the suicidal stuff. Intrusive thoughts, depression and the aka inner and the dread feeling of life not being worth it and feeling of wanting to die. I get scared this is permanent and none of it will leave. I am trying to work on my deficiencies and hope that helps even a little. I’m 28 months out now. I just really wish the really bad stuff would go. Does your baseline Atleast improve? I sure hope so. How’s it going as far as school for your daughter? Are you sending her back? Is your suicidal and akasthia better? Hugs to you!

Share this post


Link to post
Rosetta

Thanks, Elyssa.  I wrote something similar to this on your thread:

 

I’m at 41 months - 3 years, 5 months.  

 

Please don’t lose hope.  The timeline is completely different for everyone.  It’s very possible you will recover faster than I have.  


Life without aka is so different.  I have it during a wave, but it isn’t constant.  It manifests as a mental anxiety issue in the morning and as restless legs at the end of the day, and it’s generally pretty mild compared to before.  
 

I had a bad wave recently, and everything intensified, but I had only one or two days with brief periods of SI.  It wasn’t there all day, and it was mild except for about 1-2 hours on one day.  When it was gone, the wave started to improve.  Mental aka was the worst part of that wave.  Intrusive thoughts less so.
 

Now, I feel I’m living pretty well.  I would say that I’m having the same problems as people without WD have except that there is a fair amount of emotional scarring from the ordeal.  I’m aware that another wave will come, too.  I have a lot of things I have not maintained - friendships, my house, my physical health.  I think much of my unhappiness stems from those issues rather than active, mental WD symptoms themselves.

 

You will find some peace when you get to the point that you have longer periods between waves.  You will start to believe in recovery in a way you didn’t think possible.  Hang in there.  It is so worth it to keep going!

 

Each wave will get less intense over time.  You will have a few here and there that are more intense.  That is very demoralizing, but you have to remember that the next should be much less intense.  Some people call these the 1 year, 18 month, 2 year, or 3 year wave.  I think I just had a 3 1/2 year wave although it came early.  

Share this post


Link to post
Erell

Rosetta,

 

I'm so glad to read that you have some relief...

And I thank you for this post full of hope ❤

Share this post


Link to post
wantrelief

Hi Rosetta - Thank you so much for your message on my thread and for thinking of me...it means a lot to me.  I've been thinking of you too so we must have been thinking of each other around the same time.....I like when that happens.  I am heartened to read that you've had improvements....you so deserve some peace.  💖

Share this post


Link to post
Gridley

@Rosetta

 

I'm very happy you're doing so much better.

Share this post


Link to post
Dejavu

Great post, Rosetta. It's nice to know you're seeing such improvement. Hugs!!

Share this post


Link to post
Rosetta

I wrote this to someone, and I’m placing it here, too:

 

SI is very infrequent for me now.  Do not lose hope that it will stop.  It will.  Someone asked me to describe SI.  That is hard when I’m not experiencing it.  It’s a feeling of deep despair, and the thought that nothing will ever be ok again is a big part.  Constant terror was a large part of SI for me.  I no longer feel terror.  That is gone.  I sometimes feel afraid, but it’s not terror, and it passes quickly.  I’m not afraid to be alone; I’m not afraid to go out either.  I still have anticipatory anxiety if I have something to do.  Not all the time, but, to some degree or another, most of the times I have a commitments.
 

SI was so perplexing — maddeningly so.  I knew I didn’t want to die.  I was afraid I would die in various ways, but I was also afraid of being the cause of my own death.  This was so hard to understand, because I didn’t want to die. The fear that I would do that to myself was something I had never, ever thought possible.  Anytime I had depression before there was never outright fear of doing something I did not want to do!  I did not want to die, but the thought that I wanted to die was a very frequent intrusive thought.  
 

There were a few times I wanted to die when I had a particularly difficult day that my husband could not handle well, but most of the time what I wanted was for the emotional pain to end, and I saw no other way for that to happen.   If you think about it, you will realize that is also true for you. There is another way!  You must believe me.    You cannot go around.  Going through is the only way, and it’s hard and awful and miserable, but you must see it as a viable way.  


You must believe me when I say I am glad that I went through instead of around, because going around means there will never be any future.  I am living in that future, and it is not yet a full life, but I do feel pleasure now; I do feel joy; I do live. I just have periodic timeouts the timing of which I have no control.  I promise you, I am grateful for this life however disappointing it may be at times.  This morning I made muffins.  I can cook sometimes; I can enjoy a walk; I can enjoy my child.  

 

I think SI is caused by a combination of the brain being in an unnatural state AND the fact that one is “just surviving” while not experiencing any pleasure or enjoyment (anhedonia or worse).  This is happening because the brain is not operating properly in the wake of the drug.  The same is true of aka.  In fact, my belief is that aka causes suicidal thoughts independently of it causing restlessness or pacing or a vibrating feeling in the limbs.  This is based on having experienced it over and over and over for many years now.

 

You must never cut yourself off from your future, because your future is bright.  Do not let your brain tell you otherwise!  Our brains are constantly talking to us even when we don’t realize it.  I used to think this was something odd about me, but it’s a normal human occurrence.  What the brain says to us is what can help or hurt.  When we are in WD the brain says a lot of negative things.  The key is to distract yourself from your negative thoughts.  If you can turn your negative thoughts into less drastically negative thoughts that, too, will help.  Banish “always” and “never.“  All or nothing thinking is a huge part of depression and a huge part of WD.  Nothing is always or never true.  You know that.  Don’t let your malfunctioning brain tell you otherwise.  Talk back to it!
 

It’s maddening that this syndrome can’t be fixed by simply providing the drug again, but it’s true.  The “chemical” feeling comes from the fact that you can’t make sense of your thoughts and emotions, I would say, but there may be something more to it such as depersonalization.  It’s so bizarre.

 

What you are feeling and experiencing is “normal.”  It IS normal for this state of PAWS (or dysautonomia) which we call withdrawal or prolonged withdrawal syndrome.  You aren’t an outlier, but it is never going to FEEL normal to you.  
 

It is absolutely logical to deduce that because you are not seeing improvement this must be permanent for you.  Because our experiences with every other illness or injury have shown us that healing happens within 20 months, we can’t wrap our minds around this syndrome.  I had all the same doubts as you do.  Those doubts sneak in during a bad wave, too.  Will I go back and forth between feeling normal and periodically declining into madness for the rest of my life?  I know the answer is “No,” but it’s still hard to remember that in a bad wave.  In a milder wave, I can remember it.
 

I have seen people write the opposite of “mental issues go away first” many times.  Instead, a lot of people say that they go last.  I think the truth is in between.  People focus most acutely on things that disturb them most, of course.  Some people have aka and some don’t or at least it’s a very mild aka. When aka goes, the most terrible emotional states will go.


I have seen no evidence that the longer the symptom lasts the more likely it is to be permanent.  All of us will heal.  ****I think that what causes very long periods of WD is re-injury.  This is my focus: avoiding re-injury.****


I decided long ago that being “re-injured” is the main way that people suffer WD that lasts a long time.  I combed through thread after thread on SA of all the people stating that they were having years of WD.  Almost every single one had either tried to reinstate the drug, tried a new drug or had made some unfortunate mistake by taking a drug or drinking alcohol.  Re-injury can happen with the use of over the counter drugs, alcohol, and of course, prescription drugs.  Steroids, adrenaline based numbing agents at the dentist, and alcohol seem to be the most common substances to prolong WD, in my opinion.  
 

Dysautonomia can be slight and easily correctable by our bodies or very deep.  It can take a long time to correct, but almost always the key is letting the body heal itself.  Once someone is in WD and outside the safe time period for reinstatement, I feel that avoiding re-injury is the best plan, and I believe it works 99% of the time.  This is what SA means by a harm reduction approach — for those who are tapering small reductions are advised and for everyone — on or off the AD — being very careful with what we put in our bodies is imperative.  (Reinstatement has a place for some people soon after quitting or reducing a drug.  That’s not a subject I’m addressing here.)
 

I made a lot of mistakes before I found SA.  I missed doses, I increased the AD too much, of course, and I took Zanax here and there, also on the advice of the doctor.    I thought that by being careful to avoid addiction to Xanax I would avoid it’s harm.  Wrong!  My state of dysautonomia meant that Xanax injured me every time I used it.  The same is true for when I drank wine.  
 

Eventually, I quit 150 mg of Zoloft over a very short period of time — about six weeks perhaps.  I did this because I was experiencing dysautonomia.  I felt so bad that I thought that the drug was causing me to feel bad. I didn’t know about SA.  So,  my nervous system was all ready severely compromised before I was prescribed Trazodone afterward.  Taking a new prescription caused further destabilization of my nervous system, and every time I too Xanax, my system became further destabilized.  Finally, I quit all prescriptions at once.  I had no idea it could get worse - so much worse!

 

Since I found SA, I have improved my health a lot by avoiding new prescriptions and alcohol, making sure the dentist gives me a non-Adrenalin numbing agent, and walking.  Walking is very important for everyone, and it seems to help unless I’m in a deep wave.  Maybe it helps then, but it seems as if it doesn’t.

 

You will heal.  I am living proof.

Share this post


Link to post
wantrelief

Thank you for sharing this, Rosetta....much of it resonates with me as I experience some similar things, especially around SI, negative thoughts and doubt/fear.  I also feel like I am just surviving everyday which does not help any of the aforementioned.  You have a way of describing things that I can't find the words for and I appreciate your putting words to my own experience.  Most important is your message that you are healing, that we will all heal.  It is so very hard to feel this when this is one's constant state as it is mine.  I want to survive this as you have so bravely.  Thank you for being here, Rosetta. You are such an important voice on this forum.  💖

Share this post


Link to post
Rosetta

Today wasn’t so good.  I felt very down around 7:00 pm - overwhelmed, frustrated, lonely.  I had gone for a walk around 5:00.  I had been up in the night for several hours and then slept from about 6:00 to 9:00 am.  Being without any social life is hard. Living in all this clutter is hard.  
 

Realizing I may be teaching my daughter indefinitely is very demoralizing.  It’s very hard.  I am unhappy with our progress many days, and it brings my mood down so low.  

Share this post


Link to post
Erell
16 minutes ago, Rosetta said:

Today wasn’t so good.  I felt very down around 7:00 pm - overwhelmed, frustrated, lonely.  I had gone for a walk around 5:00.  I had been up in the night for several hours and then slept from about 6:00 to 9:00 am.  Being without any social life is hard. Living in all this clutter is hard.  
 

Realizing I may be teaching my daughter indefinitely is very demoralizing.  It’s very hard.  I am unhappy with our progress many days, and it brings my mood down so low.  

 

One thing I learned with WD is that everything is temporary ☺

Hang on dear ☀️

Share this post


Link to post

Please sign in to comment

You will be able to leave a comment after signing in



Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy