Rosetta: cold switch May 2011 & too fast taper Feb 2017

[Rosetta]

22 hours ago, Kristine said:

I have a feeling you and your husband will come about the other side of this with a stronger bond and your daughter will be learning the true meaning of "in sickness and in health" within a marriage.  It will happen my friend. You and your family are going to be okay. (((Hugs))) K xo

 

Wouldnt that be a nice silver lining?  Thanks, Kristine.  You are so kind.

[Rosetta]

Whew!  Well, I'm tired of being tired, that's for sure.  I might be coming out of the wave.  We shall see.

 

I woke up feeling today would be very much like yesterday, but I did get out of bed and get my daughter ready for school.  Her father took her.  Then I waited for the anxiety to reduce.  I was able to pick my daughter up which is an improvement over yesterday.  I went to lunch with her and to her music lesson.  Then I went into a store --alone-- to get hair doodles for her.  She sat with daddy in the car.  I'm still not wild about driving.  So, I avoid it when I can.  

 

I have eaten well today -- eggs, organic toast, bacon, a half-caf mocha, soup and salad.  I'm going for a walk now. 

 

Dystonia/muscle tension in the night was somewhat worse than the last few nights.

Woke up with dystonia, but it lessened pretty quickly. Dare I hope it's clearing up slowly but surely?

Cortisol/anxiety in the morning lasting until about 12:00 or 1:00 pm

Exhaustion

Appetite is not very strong

No despair or depression.  Frustrated for sure!!

 

[Kristine]

Oh, Rosetta! I do hope this wave is ending for you...it sure sounds like it   All we can do is focus on the small improvements because if we add up all the "small improvements" over a year, the improvements start to look much bigger!  

 

I bet your daughter was thrilled with her hair doodles  ....I'll have to take a leaf out of your good eating plan! Well done. 

 

I hope you are are able to get a well deserved sleep and rest tonight and tomorrow is a beautiful day. Much Love and ((((Hugs)))) K xo

[Downbutnotout]

1 hour ago, Rosetta said:

Whew!  Well, I'm tired of being tired, that's for sure.  I might be coming out of the wave.  We shall see.

 

I woke up feeling today would be very much like yesterday, but I did get out of bed and get my daughter ready for school.  Her father took her.  Then I waited for the anxiety to reduce.  I was able to pick my daughter up which is an improvement over yesterday.  I went to lunch with her and to her music lesson.  Then I went into a store --alone-- to get hair doodles for her.  She sat with daddy in the car.  I'm still not wild about driving.  So, I avoid it when I can.  

 

I have eaten well today -- eggs, organic toast, bacon, a half-caf mocha, soup and salad.  I'm going for a walk now. 

 

Dystonia/muscle tension in the night was somewhat worse than the last few nights.

Woke up with dystonia, but it lessened pretty quickly. Dare I hope it's clearing up slowly but surely?

Cortisol/anxiety in the morning lasting until about 12:00 or 1:00 pm

Exhaustion

Appetite is not very strong

No despair or depression.  Frustrated for sure!!

 

Wow, no despair or depression. That’s big.  

[BAT]

How is your sleep?  How many hours do you get, is it broken sleep, do you have vivid dreams?

 

I have a question, not related to withdrawal.. Do you eat eggs everyday?   I like to eat eggs for breakfast but I get confused if eating so many a week is bad for you.. I eat them like 4 times a week.  

[FarmGirlWorks]

5 hours ago, Rosetta said:

I have eaten well today -- eggs, organic toast, bacon, a half-caf mocha, soup and salad.

Way to go, Rosetta! When we are feeling anxious, it is so hard to eat. The other day I barely choked down a hard-boiled egg. Today, I have been feeling better and eat as much as I can to make up for the lesser days. So great that you can see the improvements (getting your daughter ready, picking her up, going to a store) -- these are important observations.

[Rosetta]

Journal:

 

 

 

My diet is not good.  Lack of appetite and difficulty buying my own food is a problem I must solve.

 

I was probably overactive yesterday.

 

The last two mornings my daughter has been really energetic.  Her classroom open house and book fair were last night. She was very excited Tuesday afternoon and evening, and yesterday afternoon.  Of course, this was difficult for me.  She's amazingly creative, and she makes me laugh.  I hope my anxiety response to her antics is going to lessen soon.  It's very hard to be natural with her.  I'm sure she can tell I'm trying to control my emotions.  She was upset last night that I couldn't focus well in her classroom.  All I could do is apologize and tell her that I did enjoy seeing her projects.  She's doing well in school.  She's met the reading level for the beginning of next year, and she's always able to do the math homework that is sent home.  As much as I object to the homework it's nice to know she learning well and not falling behind.  

: 

Dystonia all night/anxiety, but low when awakened in night

Cortisol morning

Took my daughter to school

Difficulty concentrating/anxiety

Rode in the car during husband's errands

Anxiety all day -- of a slightly different quality than before

Lack of appetite

Breakfast: an egg, two pieces of organic toast with butter, chai tea

Lunch: Do not remember, diluted orange juice and lemonade, water

Went for a walk at the lake

Picked up my daughter from school

Dinner: organic Mac n cheese

Went to my daughter's classroom open house and book fair

Difficulty concentrating/anxiety continued

Muscle tension in neck/eye all day

 

On March 20, 2018 at 7:36 PM, BAT said:

 

 

Hi, Bat, My sleep is broken.  I go to sleep between 8 and 9 o'clock and get up at 6:45.  In between I wake up at least twice and have trouble getting back to sleep, but I don't get up.  I probably get at least 7 1/2 hours if not 8 hours.

 

I eat organic eggs about 3-4 days a week.  I think they are one of the best foods.  Protein seems to be important to keep my blood sugar up.  

 

@FarmGirlWorks I love it when you encourage me.  So nice to have the positives pointed out when it's difficult for me to focus on them!

 

 

 

 

[DaveB]

1 hour ago, Rosetta said:

Journal:

 

 

 

My diet is not good.  Lack of appetite and difficulty buying my own food is a problem I must solve.

 

I was probably overactive yesterday.

 

The last two mornings my daughter has been really energetic.  Her classroom open house and book fair were last night. She was very excited Tuesday afternoon and evening, and yesterday afternoon.  Of course, this was difficult for me.  She's amazingly creative, and she makes me laugh.  I hope my anxiety response to her antics is going to lessen soon.  It's very hard to be natural with her.  I'm sure she can tell I'm trying to control my emotions.  She was upset last night that I couldn't focus well in her classroom.  All I could do is apologize and tell her that I did enjoy seeing her projects.  She's doing well in school.  She's met the reading level for the beginning of next year, and she's always able to do the math homework that is sent home.  As much as I object to the homework it's nice to know she learning well and not falling behind.  

: 

Dystonia all night/anxiety, but low when awakened in night

Cortisol morning

Took my daughter to school

Difficulty concentrating/anxiety

Rode in the car during husband's errands

Anxiety all day -- of a slightly different quality than before

Lack of appetite

Breakfast: an egg, two pieces of organic toast with butter, chai tea

Lunch: Do not remember, diluted orange juice and lemonade, water

Went for a walk at the lake

Picked up my daughter from school

Dinner: organic Mac n cheese

Went to my daughter's classroom open house and book fair

Difficulty concentrating/anxiety continued

Muscle tension in neck/eye all day

 

 

Hi, Bat, My sleep is broken.  I go to sleep between 8 and 9 o'clock and get up at 6:45.  In between I wake up at least twice and have trouble getting back to sleep, but I don't get up.  I probably get at least 7 1/2 hours if not 8 hours.

 

I eat organic eggs about 3-4 days a week.  I think they are one of the best foods.  Protein seems to be important to keep my blood sugar up.  

 

@FarmGirlWorks I love it when you encourage me.  So nice to have the positives pointed out when it's difficult for me to focus on them!

 

 

 

 

 

Dang it Rosetta, I am so sorry the anxiety seems to be hitting you again. It is just the worst and it is baffling and terrible when it just never lets up. Hoping you get a break again soon! 

[Cheeky]

Hey Rosetta,

I've been  reading through your thread and think your an amazing lady to be so positive with what your going through. I also have a 6 year old and a 15 year old and it is so difficult to look after them and go through withdrawal at the same time. the good thing is your off these terrible drugs and it only up from here, you should be congratulated. Blessing to you and thankyou for your kind words on my thread.

[wantrelief]

Wow, Rosetta...you did a lot despite having a cortisol morning and what sounds like anxiety through the day/evening.  You even went on a walk and to your daughter's open house and book fair......I can imagine that was difficult to get through but you did it!!  You should be very proud of your accomplishments.

[JanCarol]

Hey Rosetta!

 

A few days have passed since I looked in - and now I'm even more behind than before!

You were talking about your dystonia - 

 

On 2/24/2018 at 5:18 AM, Rosetta said:

Lifting weights to use the tense muscles seems to help.  This includes the muscle in my chest. If one looks at a diagram of the neck and shoulder muscles one can see how they connect with the chest muscles and those that operate the jaw and run up to the temples.  They all affect each other.  

 

As I read about your dystonia, I thought about how osteopathic adjustment helps me settle a lot of things down.

 

If you're really brave you could go to a chiropractor.  Many people have gotten relief from those adjustments - I personally find them too invasive and they are hard on my connective tissue, but others seem to do fine with it.

 

Or, if the weights are helping, maybe some specific neck stretches will help?

 

 

On 2/25/2018 at 6:31 AM, Rosetta said:

Today, I woke up without cortisol, I did not have much dystonia in the night, I woke up without much dystonia, and

and I could have slept in if I did not have a 6 year old.  This is a very unusual occurrence.

 

You are having windows, and I know it's hard to remember this when you are in the difficult spots!  

 

The best way to build up your windows into a toolbox is:

1.  Gratitude!  (I think you are already doing this)

2.  Write about it (you're doing pretty good at this one, too)

and

3.  READ what you wrote, when you are in a distressed state, a wave, so that you can remind yourself:  this is temporary, this will pass, it's only symptoms, the windows are happening more often, and the waves are getting shorter.  Reading your positive experiences is hard when in a wave, because all you want to do in a wave is explode into whatever symptoms you are having - but - reading your positive experiences when in a wave is the best way to remind yourself that the wave is not forever.

 

On 2/27/2018 at 7:38 AM, Kristine said:

You have a unique ability delve into the heart of each feeling/experience and make sense  try to untangle and make sense of it.  Thank you, it helps me make sense of my own experiences. I'm sure it helps many many more people.  

 

Truly, this is a gift you have Rosetta.  Kristine is not the only one to notice it - nor is she the only one to appreciate it!

 

When you wrestle with your feelings, and wrangle them out onto the page - it may be a challenge for you - but you are bringing to light things that so many of us have felt, but that we haven't been able to make the words express it.  You have a special talent for expressing these things, and it will serve you well.  It's already serving the community, and I thank you, too!

 

On 3/1/2018 at 7:47 AM, Rosetta said:

 Do the Mods have a sense of the usual cessation time of this symptom?

 

Some of the anxiety is native, and needs to be addressed by techniques, like Claire Weekes and Baylissa Frederick.

 

This anxiety is amplified by the drug withdrawal, which can continue for years.  It continues longer if you are unable to find mindfulness or other practices which give you tools to turn to when the panic hits.

When I look at CT timeframes, I look at:

1.  How long a person was on the drug(s)  (16 years in your case)

2.  How old they were when they went on the drugs (people who take the drugs from childhood have a harder time, as they never got the chance to establish an adult persona)

3.  How many times the drugs were switched (3-4 times)

4.  How long would a slow taper to 0 have taken?  (5 years, if you only count the Zoloft)
(credit to Rhi and Petunia, as this is stuff they wrote out, that I have adopted)

 

If you had slow tapered, you would start to feel better by about halfway through your taper, or 2.5 years.  You are approaching the 2.5 year mark, and you are starting to have windows.  It is my belief (and I have no proof) that CT healing is the same as taper healing - just less gentle.  So you are having windows, and that is a very good sign.

 

Then there are the factors which are harder to measure:  communication skills, insight, curiosity, the ability to "ride" extreme states, outside stressors, and willingness to build and use a toolkit.  You've got a lot of this going for you - but you've got a lot of stressors, too.

 

I'd like to hear that your toolkit is broader and deeper, and that you have a regular practice of some sort to fall back on when times get rough.  It's a key piece to surviving drug free.  The toolkit will also help you ride those extreme states a lot better, too.

 

When you are in a panic is not the time to develop the practice or tool.  It's when you feel good (and you feel like you don't need it) that it's time to buckle down and get to work.  I'm not particular about what your practice looks like - it might be meditation or prayer, yoga or walking, balancing spoons on your nose, telling jokes (there is one mod who performs stand-up comedy as a challenge and healing tool!), toastmasters, singing, dancing, colouring books, painting, writing, journalling   - your practice is as individual as you are.  But a practice must be done regularly.  Daily, if possible, carve out that time and space for you - and then - when the fit hits the shan, you've got something to fall back on.   I realise that it's hard to carve out "me time" with a young daughter, but perhaps - like a yoga practice - you can include her, and share your toolkit with her, too - offering her resilience for the stress she will inevitably face as a teen and adult.

But all in all, it looks like you are well on the way to healing, and I can't say what it will look like in a year, two years time, but I can venture to say it will look much better than it does now.

I hope you see the sun today! (walking in the sun for 10 minutes a day was all I could do regularly for about 3 years!  It was only one tool, but it was a reliable one.)

[musk]

First, I want to send hugs to Rosetta.

 

Secondly, I want to ask Jancarol, about the so-called windows. I have read here that the windows tend to be gradually clearer and longer. But in my case, although I have had some tiny windows the last 2 months, it has not been each longer than the previous one. Does this also happen? I'm really scared. Should it be evaluated in the longer term, maybe? Can I send you a private message to ask you more about my specific case, to respect Rosetta's thread?

[AliG]

Yes Musk  ~ that would be better. Please do it on your own thread. Windows and waves are normal, to be expected and different for everyone.

 

Hi Rosetta ~ Just saying hi , and I know how hard it is but hang in there and " mucho hugs ". I think you're doing great but you may need to get that blood sugar problem under control.

 

It's all about keeping insulin low with high natural fats ( which doesn't raise insulin) and very low sugar.

 

Anyway, take care .   Ali

[Rosetta]

Thanks @JanCarol @AliG @musk @wantrelief @Cheeky @Downbutnotout @DaveB It's so nice to feel cared for by all of you!

 

It's almost Spring Break.  My daughter is home sick on the last day of school.  She'll be home until April 2.  Ten days.  We are going to find some activities for her when she gets well.  I'm going to have to use all my techniques to endure the reduction in rest I will get.  So, thank you, JanCarol, for your post.  So nice to "see" AliG, too.  Thanks for the encouragement.

 

Yesterday was hard until evening.  It was anxious and uncomfortable.  The day had the same difference in quality that I described about the day before.  I felt crummy.  It's hard to do anything and hard to not do anything.  Reading caused my neck and eye to tense up and twitch (as is happening now).  Thank you, JanCarol, for neck stretches!!!

 

Yesterday:

Awakened in night several times with mild anxiety; no depression

Dystonia in night

No cortisol awakening, but quite anxious in morning.

Anxious all day - with a similarly different quality to the anxiety as happen yesterday; it's hard to explain -- is it less, is it more, is it simply different? -- very uncomfortable (did it have something to do with the barometric pressure changing?)

I took my daughter to school ready to volunteer, but there was no need.  So, I went home, but my mind was very active.  I read all day and felt a lot of muscle tension in my neck and twitches in my eye.

Picked my daughter up from school

Went to gymnastics; on errands with my family afterward

Went for a short walk in the park after returning home

 

Breakfast: yogurt and non-organic cereal, chai tea

Lunch: salami sandwich, apple, water

Dinner: chicken soup, water

 

A bedtime I felt good and relaxed.  It was amazing.  Then my daughter's ear started to hurt.  Every cry when she woke up in pain activated my glutamate system.   I can't even begin to describe how horribly disappointed, frustrated and demoralized I felt. The barometric pressure changed and it started to rain.  That explained the earache.  She must have an infection that causes her ear to be sensitive to the pressure.  This morning her ear is no longer painful but she's low energy and congested.

 

(Horrible anxiety at bedtime - awakened after falling asleep by sick child)

Today:

Very slight dystonia in night (almost none at times when I woke up!)

Awakened with only slight anxiety in night; no depression

No dystonia upon awakening

No cortisol awakening

No anxiety before breakfast

Child did not go to school; I tried to sleep in, but couldn't very long

Breakfast: eggs, organic toast with butter, chai tea

Anxiety increased after breakfast (9:30); decided daughter is staying home

 

[AliG]

Hey Rosetta, all good except for that sandwich. Did you know that 1 slice of wholegrain bread has the equivalent effect in the body ~ (raising insulin) of about 3 teaspoons of sugar. Crazy, isn't it? Cereal is not really healthy either, as it's full of gluten and GMO wheat and also raises insulin. Go figure.

 

I can see a positive change in some of your symptoms, and that's great ! Your positivity is helping, for sure. I know you're struggling right now but this gets better and easier. It won't always be this hard. Right now you are in the trenches, doing it hard but this all lightens up ... and then gets hard ... and then lightens up again ...  ...etc. etc It's all " windows And waves" but the graph is always ultimately heading upwards.

Ali

[Rosetta]

Thank you, Ali. @AliG. I love to hear that -- that you see positive changes in my symptoms.  I think so, too, but I'll look back to this when I hit the trough of a wave!

[Rosetta]

On March 23, 2018 at 11:40 AM, Rosetta said:

Today:

Very slight dystonia in night (almost none at times when I woke up!)

Awakened with only slight anxiety in night; no depression

No dystonia upon awakening

No cortisol awakening

No anxiety before breakfast

Child did not go to school; I tried to sleep in, but couldn't very long

Breakfast: eggs, organic toast with butter, chai tea

Anxiety increased after breakfast (9:30); decided daughter is staying home

 

The rest of the day was spent distracting myself as much as possible.  

 

Lunch: Do not remember -- apples for snack

Dinner: Polenta, spinach and carrots

 

Anxiety eased in the evening

Bedtime was ok 

 

Slept well

Very little dystonia in the night

Anxiety slight in the night

 

Awakened by a dream -- I was at my grandfather's house, and he had just passed away.  I put my daughter to bed in his room and went to the kitchen.  My husband hadn't followed me yet.  I stood behind my grandfather's chair at the table, and it hit me that he wasn't going to be there to have dinner ever again.  I felt grief in a way I haven't since he passed in late July of 2011 - 3 months after Celexa was cold switched to Zoloft.  In reality, my baby was 3 months old when he died, but in the dream she was her current age.  

 

I sold the house a year or two ago.  Now, I can't even remember when.  Two and half years maybe?  One year?  I don't know.  In my dream I had a normal grief response -- very distraught, but completely normal for the circumstance.  I woke up with tears in my eyes, but no longer feeling the grief.  It seemed to be cut off upon my awakening.  

 

I hope this is evidence that normal emotions are coming back.  I've been having dreams for many weeks in which I felt normal cognitive functioning, but I'm not sure I've had dreams about having normal emotions.  

 

I spoke with my mother, and she was very hurtful.  I'm handling it well.  I'm trying to change my mindset about her place in my life.  She's been more of an ugly, mean sister, and I have to think of her that way.  Dealing with her when she isn't getting what she wants is like dealing with a bully, mean girl in high school or junior high.  It's tough.  I have to re-direct my thoughts, change the channel and try to remember that I'm no longer at her mercy.  

[DaveB]

11 minutes ago, Rosetta said:

 

The rest of the day was spent distracting myself as much as possible.  

 

Lunch: Do not remember -- apples for snack

Dinner: Polenta, spinach and carrots

 

Anxiety eased in the evening

Bedtime was ok 

 

Slept well

Very little dystonia in the night

Anxiety slight in the night

 

Awakened by a dream -- I was at my grandfather's house, and he had just passed away.  I put my daughter to bed in his room and went to the kitchen.  My husband hadn't followed me yet.  I stood behind my grandfather's chair at the table, and it hit me that he wasn't going to be there to have dinner ever again.  I felt grief in a way I haven't since he passed in late July of 2011 - 3 months after Celexa was cold switched to Zoloft.  In reality, my baby was 3 months old when he died, but in the dream she was her current age.  

 

I sold the house a year or two ago.  Now, I can't even remember when.  Two and half years maybe?  One year?  I don't know.  In my dream I had a normal grief response -- very distraught, but completely normal for the circumstance.  I woke up with tears in my eyes, but no longer feeling the grief.  It seemed to be cut off upon my awakening.  

 

I hope this is evidence that normal emotions are coming back.  I've been having dreams for many weeks in which I felt normal cognitive functioning, but I'm not sure I've had dreams about having normal emotions.  

 

I spoke with my mother, and she was very hurtful.  I'm handling it well.  I'm trying to change my mindset about her place in my life.  She's been more of an ugly, mean sister, and I have to think of her that way.  Dealing with her when she isn't getting what she wants is like dealing with a bully, mean girl in high school or junior high.  It's tough.  I have to re-direct my thoughts, change the channel and try to remember that I'm no longer at her mercy.  

 

 

 

 

Sorry that was your relationship with you Mom, you are doing better though, well on your way to complete healing!

[Rosetta]

Slept well

Very little dystonia in the night - almost none

very little anxiety in the night 

(dream as recounted in previous post)

Breakfast: egg, toast with cream cheese, decaf coffee

Went to an Easter egg hunt with daughter at the park across the street

Very little anxiety today

No lunch

Lack of appetite

(Phone call with someone - upsetting as recount in previous post -  didn't cause much anxiety

Almost no dystonia all day despite reading

 

This is a window.

 

I guess I feel kind of numb (or normal? The way a person who had healed from her past would feel?) Or resigned?  I don't know.  I feel that I want to fix my life and that I can fix my life, but I have the knowledge that this feeling will go away tomorrow, and it's very demoralizing.  I want to get on with "it" the way I used to be able to when an episode of depression lifted.  I know it will happen someday, just not tomorrow.

 

 

[Rosetta]

The window continued through today

 

Slept poorly - daughter woke me up a lot

Felt some anxiety in the evening before bed -- mostly having to do with my mother

We stayed at my mother in law's as she is out of town

Some dystonia in the night

No cortisol awakening

Slept late

Some anxiety today prior to a late breakfast out

No dystonia except while reading 

Went to a park for many hours 3-4

Ver tired afterward -- could have napped if I didn't have my daughter keeping me awake

Calm afternoon/early evening, but still feel some anxiety returning

 

Im feeling a lot of anger and fear about my mother and the future.  Trying to ignore it

 

 

 

[DaveB]

12 hours ago, Rosetta said:

The window continued through today

 

Slept poorly - daughter woke me up a lot

Felt some anxiety in the evening before bed -- mostly having to do with my mother

We stayed at my mother in law's as she is out of town

Some dystonia in the night

No cortisol awakening

Slept late

Some anxiety today prior to a late breakfast out

No dystonia except while reading 

Went to a park for many hours 3-4

Ver tired afterward -- could have napped if I didn't have my daughter keeping me awake

Calm afternoon/early evening, but still feel some anxiety returning

 

Im feeling a lot of anger and fear about my mother and the future.  Trying to ignore it

 

 

 

 

Hooray for an extended window! I am so happy for you and your recovery, try to enjoy it and not let thoughts on you Mother bring you down. You are so strong and above her, she can't mess with you now unless you allow her to! 

[degen12]

On 1/27/2018 at 1:21 PM, Rosetta said:

 

Yes, it's horrendous isn't it?  I'm glad I'm still here after that.

 

Thank you for the compliment.  

 

I hope you are doing well.  You have been through a lot. I'm sorry that you have been treated with these drugs.  It's been an eye opening experience for me to have this condition and read about the different experiences of the people on this site.  

 

 

I've seen a few people separate their symptoms into mental and physical, and I think your concept is very useful in this situation. I think when people believe they have "mental" symptoms it's actually mental akathisia with a physical basis. I've been doing a lot of literature searches on akathisia and reading as many full-texts as I can get my hands on and it's completely recognized that there is a state of akathisia where there are symptoms like profound dysphoria, anxiety, and suicidality. All before physical symptoms manifest.

 

I'm going to pretend I'm a scientist and do a review on akathisia some time in the future. I really think akathisia is the no. 1 withdrawal symptom and the great imitator. I'm very biased though as akathisia was and is about 100x worse than every other withdrawal symptom I've had, and I know how to recognize it.

[Rosetta]

12 hours ago, degen12 said:

I've seen a few people separate their symptoms into mental and physical, and I think your concept is very useful in this situation. I think when people believe they have "mental" symptoms it's actually mental akathisia with a physical basis. 

 

Thanks for stopping by, Degen.   I wish there were a name for "mental akathisia."  Maybe there is, but I gave up looking at that topic.  It did seem that my mind was pacing back and forth inside my head.  That description is woefully inadequate to portray the suffering.  I don't like to think about that experience, quite honestly, but I can't avoid having it pop into my mind.  

 

I suspect that some people in WD do not have that experience.  There is a great deal of difference in the intensity of symptoms that different people experience with this syndrome.  I believe some people feel anxiety, but not what I call mental akathisia.  It shocks me to find that some people don't have much anxiety at all!!  I'm grateful that I don't have the insomnia you describe on your thread.  We each seem to have 1 or 2 persistent symptoms.

 

You are doing so well!  And you have little children!!  I'm very pleased that you are healing.  I hope you never experience anything as difficult as this again! -- Rosetta

[Rosetta]

Journal:

 

The nights and waking up in the morning are the worst parts of life right now.  The short period of insomnia is fraught with negative thoughts, fears, and worries.  I don't want to get out of bed or turn on the light as I'm afraid I will be up too long and miss out on sleep.   I'm grateful that I can go back to sleep.

 

Sleeping in the same bed with my daughter is difficult, but it gives her a sense of security.  I do not want to change her routine or withdraw from her any more than I have to.  She seems to be okay with the fact that she wakes up alone if it is light when she wakes.  This arrangement isn't ideal for me, but I'm trying to lower the impact of this illness on her.

 

For me, waking up in the morning is not pleasant at all.  I think I feel relatively normal while I'm sleeping.  I'm waking up to this nightmare that is WD everyday.  So, I'm trying to change my mindset on that and think of all the good things about my life when I wake up.  I'll be glad when I can get to a point that I can do more and keep things in order better.  That day is coming.  I can see it in my progress.  Someday I will wake up happy about the day ahead.

 

Monday, March 26:

 

Stayed at MIL's cottage another night

Cortisol in the night - after daughter had a bad dream, a very bad one, switched beds

Anxiety in night

Cortisol awakening 

Very anxious through morning

Breakfast at the cottage - eggs, avocado toast (organic bread), 1/2 cup coffee

Stayed in all day trying to distract

No lunch (mistake)

Anxious until 2:00 or 3:00

Packed up & drove (actually driving) 45 minutes home

Went to gymnastics near home 

Had dinner out - tofu, orange chicken & rice, water

At bedtime anxious (went to bed late)

 

Today:

Cortisol awakenings in the night - switched beds so daughter could not kick me

Anxiety in night

Slept in -- many wake ups, but I fell back asleep 3-4 times

No cortisol awakening

Breakfast: eggs, avocado toast (organic bread), raspberries, black tea

Feeling pretty calm - nothing in particular to do today -- waiting for some anxiety to lift

Feeling normal more or less  -

I think the consequences of being out of commission so long is the hardest part atm -- the house is a wreck

 

 

 

[Dalalea]

2 hours ago, Rosetta said:

mental akathisia

Hi Rosetta,

Would that be the same as racing thoughts? I sometimes experience anxiety and worry but I wouldn't say my thoughts race. They just stay around and make me feel depressed!

Hang in there!

Dalalea

[Rosetta]

@Dalalea Could be.  I'd rather not think about it enough to describe it.  I would like to forget about it.  I'll drop by your thread to see how you are.  Thanks for stopping by!

[Rosetta]

This is a definitely a wave.  It's less intense than those I've had recently.  It's been hard to see the time it started as it became gradually more intense.  My daughter is home on Spring Break, and I'm enjoying little moments with her.  We went for a walk in the park.  It's more relaxing when I go by myself, but we went to the playground.  I have more focus and patience in this wave.  I can interact with her more easily.  This break from school is better than the last break that lasted 4 days in Jan or Feb.

 

I stayed up too late last night (9:15), and I felt sleepy before going to bed.  That's a feeling I haven't had very often since WD hit.  I have noticed that I yawn now, and I feel the urge to stretch sometimes when I wake up.  That has been happening over the last month or so.  It's strange that WD would prevent that, but I think it does.  It's some kind of muscle signal issue.  I have had a lot of muscle tension all over.  Perhaps that is continuing to resolve.

 

Yesterday:

Lunch yesterday: black bean patty; spicy tofu patty

Dinner: broccoli cheese soup

Spent most of the day inside yesterday trying to calm anxiety

I took a bath yesterday

Took my daughter to the park at about 5:00

 

Today:

Slight dystonia in the night

Slight anxiety in the night

No cortisol awakening

Slept late (8:00)

Anxious before getting out of bed -- the longer I stayed in bed the worse it became

Late Breakfast: eggs, organic toast 

[DaveB]

36 minutes ago, Rosetta said:

This is a definitely a wave.  It's less intense than those I've had recently.  It's been hard to see the time it started as it became gradually more intense.  My daughter is home on Spring Break, and I'm enjoying little moments with her.  We went for a walk in the park.  It's more relaxing when I go by myself, but we went to the playground.  I have more focus and patience in this wave.  I can interact with her more easily.  This break from school is better than the last break that lasted 4 days in Jan or Feb.

 

I stayed up too late last night (9:15), and I felt sleepy before going to bed.  That's a feeling I haven't had very often since WD hit.  I have noticed that I yawn now, and I feel the urge to stretch sometimes when I wake up.  That has been happening over the last month or so.  It's strange that WD would prevent that, but I think it does.  It's some kind of muscle signal issue.  I have had a lot of muscle tension all over.  Perhaps that is continuing to resolve.

 

Yesterday:

Lunch yesterday: black bean patty; spicy tofu patty

Dinner: broccoli cheese soup

Spent most of the day inside yesterday trying to calm anxiety

I took a bath yesterday

Took my daughter to the park at about 5:00

 

Today:

Slight dystonia in the night

Slight anxiety in the night

No cortisol awakening

Slept late (8:00)

Anxious before getting out of bed -- the longer I stayed in bed the worse it became

Late Breakfast: eggs, organic toast 

Honestly, it sounds like even in a wave you are managing pretty well. Looks like you are eating healthy as well, that can only make things better I would think. 

[Kristine]

Biggest of (((hugs))) my friend, thinking of you as always  K xo

[FarmGirlWorks]

Big hugs to you, @Rosetta. Great to hear that you have been able to spend QT with your daughter. It is so disheartening to (still) have waves. I was in one the last week or so (I do not keep records, just SA posts, which is all I can manage). The last two days are not exactly a window but at least not thinking "death-is-the-only-option." What @JanCarol posted on your thread about timelines was really helpful. I am a few days out from 12 months and realize this process is going to be longer than that :-(

 

My bf gave me a TENS unit to possibly help my "dead" nerves on my right side that resulted from the brain tumor. Am hoping that -- maybe just maybe -- it will also help with WD. Hope springs eternal in this mess.

[Rosetta]

9 hours ago, DaveB said:

Honestly, it sounds like even in a wave you are managing pretty well. Looks like you are eating healthy as well, that can only make things better I would think. 

 

The day got worse, but I made it through ok.  I wanted to take my daughter to the park, and the effort to leave the house was so anxiety producing that I was crying.  That hasn't happened in at least a week.

The anxiety got worse in the afternoon, but I did take my daughter to the park for about an hour and a 1/2.  It was very hard to enjoy the trip, but if we were walking it was easier.  The time I spent sitting while she played was not pleasant.  I felt the Akathisia was back to a small degree.  I managed do my normal length walk broken into stages rather than all at once.  It was better than not going for a walk, I'm sure.

I Forgot to add that I had 1/2 cup of caffeinated coffee with breakfast

Lunch: Peanut butter on organic toast.

Dinner: steak, bell peppers, onions, guacamole (fajitas), organic corn chips

 

Having RLS -- restless leg syndrome this evening.  It feels just like mild Akathisia, and it's very hard to tamp down the anxiety it produces.  I have stayed up to almost 10 while my daughter fell asleep on the couch.  My legs finally feel calm enough to go to bed.

 

Very little dystonia today

Muscle tension everywhere

Anxiety -- high

Lack of appetite

Frustrated with the state of my house

Difficulty focusing

 

@FarmGirlWorks @Kristine Thanks for stopping by. All in all even this day shows improvement.  I didn't have SI.  Normally I do on a day like this.  I know it will get better. That's a knowledge I have very deep down, and it is something that keeps me strong enough.  I'm working on accepting that I can't live the life I want to right now.  I can't be sure I will be able to avoid cancelling plans.  I can't fix the clutter in my house or do any deep cleaning.  I can't have certainty about anything.  It's a very different existence then I would like to have, but it's ok . . . Mostly.

 

I'm going to have cut out bread as @AliG recommends, at least during waves, and see if it helps.  I hoped that having organic bread without the pesticides would be enough.  My husband has to shop and cook, and so I hate to be "picky."  This is especially true when he's sick with a bad cold.  I read through AliG's thread just now.  She CT'd in 2014.  Her story is inspiring.  I'm hoping she will write a success story in June.  She did biannual updates on her thread, and they are worth a read for those of us who need a little extra hope. She's been very strong, and guess we have to be, too.  She took some cold medicine this past Winter that affected her, and she believes she could have avoided a recent wave if she had not.  She's recovered from that glitch, too.  

[Kristine]

7 hours ago, Rosetta said:

All in all even this day shows improvement.  I didn't have SI.  Normally I do on a day like this.  I know it will get better. That's a knowledge I have very deep down, and it is something that keeps me strong enough.  I'm working on accepting that I can't live the life I want to right now.  I can't be sure I will be able to avoid cancelling plans.  I can't fix the clutter in my house or do any deep cleaning.  I can't have certainty about anything.  It's a very different existence then I would like to have, but it's ok . . . Mostly.

The biggest of hugs my friend. I wish I could wrap you up and protect you from anymore symptoms. I admire you so much Rosetta...just to get out to the park with your daughter is a huge achievement  acceptance is the absolute key to this...experience (I think we need to name it something more appropriate) The other stuff can wait...clutter, deep cleaning, social responsibilities, hair cuts, gardening...it can all wait.  It's just not important.  

 

I'll tell you something kinda funny..at least I hope it will help you smile...my house renovation should be finished in 4 weeks. I've had very little to do with it lately. Anyway, the time came to choose the colour of the render for the outside of the house. My husband presented me and my non functioning , non creative brain with a massive colour palette  uuummm....no can do. I've given him the choice. I said "as long as it's not purple!" Thankfully I had chosen many of the interior colours last year   In the scheme of things and what is important...the colour of the render just "doesn't matter" it's not on my important list!  K xo

[Rosetta]

Kristine,  Thanks for your note.  It's a hard day today.  There are a lot of positives, but the physical anxiety is high.  It's in my legs, arms and jaw.  The dystonia is very slight.  Everyone is sick -- coughs, chest congestion, cabin fever.  Spring Break continues!  My husband is in bed.  My daughter is bored.  I need to get her out to play, but I want to hide and distract myself.  I'm thinking I should go for a walk alone and see if that helps.

 

Poor sleep due to daughter's coughing

Very slight dystonia; sometimes seems to be gone

Anxiety when awake

No cortisol awakening

Awoke with anxiety

Could not sleep in, but tried to relax and meditate on breath

Anxiety is in my arms, legs and jaw -- feels like slight Akathisia 

Egg for breakfast -- late

It's now 12:40 pm

 

To give everyone some hope see what AliG (who CT'd in May of 2014) wrote in October of 2016.  

[Rosetta]

The day got better after I took my daughter and her friend to the park.  Being out in the sunshine helped ease the anxiety some.  Having a little friend for my daughter took a lot of pressure off.  I read a book while they played.

 

Lunch: egg, piece of cheese

Dinner: Lentil soup

 

Dystonia in neck very slight

Muscle tension in jaw, arms and legs eased off by 3:00 or so

RLS tonight

[wantrelief]

Reading a book in the sun sounds lovely.  I am so glad the sunshine helped ease your anxiety.

[Rosetta]

Thank you @wantrelief.  I hope you are doing ok!

 

The idea of histamine intolerance being linked with AD WD is very intriguing given that ADs were derived from anti-histamines a and have an anti-histamine effect.  The links below were posted by freespirit.  Many of the symptoms of ADWD are symptoms of histamine intolerance?

 

General information about HI and the symptoms: https://www.marioninstitute.org/histamine-intolerance-syndrome/

 

Information about cystitis and HI: https://www.foodsmatter.com/allergy_intolerance/histamine/articles/histamine-estrogen-and-interstitial-cystitis-the link-01-16.html

 

Histamine and chronic bladder inflammation: https://healinghistamine.com/histamines-role-in-chronic-urinary-tract-infections-or-intersitial-cystitis/

 

The connection between HI and hormonal changes in menopause and peri-menopause https://healinghistamine.com/the-menopause-histamine-connection/