Kristine: not alone

[neroli]

5 hours ago, Kristine said:

Only disappointed and frustrated with myself for not being able to respond sooner.

 

No. please don't be - I know how impossible it is to do anything at times.

 

You're one hell of a woman, Kristine.  

 

The song you posted is so poignant and relevant - tears streaming down my face.  Thank you for that.

 

Love is coming you way across the ditch.

 

Neroli 💜

[neroli]

Thank you, Kristine, for introducing me to Sara Bareilles - phenomenal voice and talent.

 

Neroli 💜

[Kristine]

On 6/25/2020 at 12:33 AM, wantrelief said:

Hang in there, Kristine....better days are ahead.

 

Much much love to you. 

Thank you my dear friend, and much love to you as well. I think of you often. I’ve been feeling very disconnected, like I’ve shut down. And as a result haven’t been able to communicate much. 💜 K xo

[Kristine]

On 6/28/2020 at 4:53 PM, neroli said:

No. please don't be - I know how impossible it is to do anything at times.

 

You're one hell of a woman, Kristine.  

 

The song you posted is so poignant and relevant - tears streaming down my face.  Thank you for that.

 

Love is coming you way across the ditch.

Thank you dear Neroli, this song could have been written about WD and the institution of psychiatry (I believe it was written about refugees). It makes me Cry as well. Love to you dear one. K xo

[Kristine]

On 6/28/2020 at 1:43 PM, Altostrata said:

Kristine, what drugs are you taking now?

Hi Alto, I’m taking 7.5mg of fluoxetine. The last drug. I commenced tapering the fluoxetine after a 6 month break of all tapering. The previous taper was the diazepam last year which rendered me bed bound. The PAWS has taken its toll and out of frustration I halved the fluoxetine from 20mg to 10mg then slow tapered from there (see sig). The past two months has been particularly horrific. The chronic insomnia has disabled me. I did go to my GP and she gave me zolpidem 10mg (I only took 7 tablets over 8 weeks) spread out. She also prescribed melatonin ‘Circadin’ 2mg. Took for one month. Not effective, but I think it made me worse. Last tablet about 2 weeks ago. The past two days have been a little better. 2-4 hours sleep instead of 0-1 hour sleep. I am holding the 7.5 mg dose as of the 27th May. K xo.

[wantrelief]

1 hour ago, Kristine said:

I’ve been feeling very disconnected, like I’ve shut down. And as a result haven’t been able to communicate much.

Oh I am really sorry you are feeling this way and that this is such a difficult time in general.  I understand your not communicating much.  I just want you to know that you are always in my thoughts. I am so heartened to hear that your sleep has been a little better recently.  You are so very brave, my lovely friend. 💖WR

[DataGuy]

Hi @Kristine,

 

Sorry you are suffering so much. What symptoms did you have that made you think you were suffering from serotonin toxicity? Can you let us know what your sleep and symptoms were like around the time when you cut the fluoxetine in half and how the symptoms have progressed since then with each cut? 

 

I think you are doing the right thing by holding right now. It can take a long time to recover from a benzo taper, which is why they are often left until the end. It can easily take 1 or more years for some people. It is possible to react badly to melatonin if your nervous system is sensitized from withdrawal. 

[Altostrata]

Good to hear you're hanging in, Kristine. You're only on one drug now, a real achievement. You can give yourself a break from tapering, let your sleep come back, there's no rush.

[Kristine]

On 7/5/2020 at 12:27 PM, wantrelief said:

Oh I am really sorry you are feeling this way and that this is such a difficult time in general.  I understand your not communicating much.  I just want you to know that you are always in my thoughts. I am so heartened to hear that your sleep has been a little better recently.  You are so very brave, my lovely friend. 💖WR

Thank you dearest WR, it is so challenging. Sick of living in survival mode year after year 😕 yesterday I went to my GP for a new script etc...explained to her my WD symptoms and how I’ll be switching to a micro taper. Met with a puzzled look. No empathy. Then she said “it is unfortunate”, I said “No, it is not unfortunate. It was avoidable. It was unnecessary and therefore it is unethical “ ...think I need a new GP. Sigh 😔. Much love to you, K xo

[Altostrata]

Kristine, if this last drug is not causing adverse effects, strongly recommend you take a break from tapering for a bit.

[Kristine]

Hi @DataGuy, 

On 7/5/2020 at 11:02 PM, DataGuy said:

What symptoms did you have that made you think you were suffering from serotonin toxicity?

This is a post from Feb 2018...

“I know that many of the symptoms of w/d overlap with serotonin toxicy.  Not to mention various other conditions.  However, my coordination/muscle spasms/muscle rigidity/gait/hypereflexia have progressively been worsening and are now much longer in duration..I don't think I explained it well on my thread.  I'll try my best.....

• best time is when I first wake in the morning.  As the day progresses my movements get worse
• muscles will seize up...for example. My neck muscles seize/spasm and then my head will jolt backwards. My hands will shake and lock in a 90 degree angle to my wrist. It is all painful.
• My shoulders jolt up and down.  Same with my arms. Jerking motions. Horrible.
• I walk with jolting movements.  If I get a fright/shock...eg loud noise....every muscle in my body goes in to spasm.  I have to use all my mental energy to will my muscles to walk to bed.  Then it's the usual tremors, shaking and muscle convulsions.  My head will violent jolt backwards...over and over again.  This usually leads to muscle rigidity. It is like my whole body is frozen....the pain in my muscles is extreme. 
• I am often in pools of sweat. Sweat literally drips off my hands and feet.
• coordinating and dexterity is also bad....if I am drinking from a glass the tremor is so bad I will often spill the drink”

More importantly, when I halved the fluoxetine and rapid tapered the dexamphetamine,  the jolting, locking muscle symptoms disappeared. 
 

On 7/5/2020 at 11:02 PM, DataGuy said:

Can you let us know what your sleep and symptoms were like around the time when you cut the fluoxetine in half and how the symptoms have progressed since then with each cut? 

I didn’t keep a journal this time round. I’ll do my best. After the initial cut, I had a few days of feeling better, almost a euphoric feeling. I’ve heard that can happen. Then insomnia set in and got worse and worse (insomnia has been an ongoing issue). If I did sleep at all I’d be tormented by horrific nightmares. Bad akathisia set in about a month later but I wasn’t pacing this time. Screaming on the inside, agitated, irritable, hostile, feeling of rage, skin crawling, sandpaper eroding my insides, nerves and skin on fire, suicidal. I just wanted to die. Pure terror. The head pressure and pain got worse. It has eased a little now but I’m left with what I can only describe as a bruised, raw, inflamed brain. Thankfully the nausea or vertigo has not returned at this stage. 
 

 

On 7/5/2020 at 11:02 PM, DataGuy said:

I think you are doing the right thing by holding right now. It can take a long time to recover from a benzo taper, which is why they are often left until the end. It can easily take 1 or more years for some people. It is possible to react badly to melatonin if your nervous system is sensitized from withdrawal. 

Thank you, The benzo taper last year was brutal. I know I’m kindled And suffering PAWS from the multitude of drugs I’ve come off. K 🌸🙏

[Kristine]

6 minutes ago, Altostrata said:

Kristine, if this last drug is not causing adverse effects, strongly recommend you take a break from tapering for a bit.

Thank you dear Alto, yes, I’m taking a break from tapering. I pushed myself too hard. Much love K xo

[Rosetta]

Kristine,

 

So glad to see you are able to post.  I think of you often.   Yes.  It was unethical to put it very mildly.
 

I’m doing ok.  It’s not over, but I’m ok.
 

All my love and best wishes,

 

Rosetta

[DataGuy]

On 7/8/2020 at 6:51 PM, Kristine said:

Hi @DataGuy, 

This is a post from Feb 2018...

“I know that many of the symptoms of w/d overlap with serotonin toxicy.  Not to mention various other conditions.  However, my coordination/muscle spasms/muscle rigidity/gait/hypereflexia have progressively been worsening and are now much longer in duration..I don't think I explained it well on my thread.  I'll try my best.....

• best time is when I first wake in the morning.  As the day progresses my movements get worse
• muscles will seize up...for example. My neck muscles seize/spasm and then my head will jolt backwards. My hands will shake and lock in a 90 degree angle to my wrist. It is all painful.
• My shoulders jolt up and down.  Same with my arms. Jerking motions. Horrible.
• I walk with jolting movements.  If I get a fright/shock...eg loud noise....every muscle in my body goes in to spasm.  I have to use all my mental energy to will my muscles to walk to bed.  Then it's the usual tremors, shaking and muscle convulsions.  My head will violent jolt backwards...over and over again.  This usually leads to muscle rigidity. It is like my whole body is frozen....the pain in my muscles is extreme. 
• I am often in pools of sweat. Sweat literally drips off my hands and feet.
• coordinating and dexterity is also bad....if I am drinking from a glass the tremor is so bad I will often spill the drink”

More importantly, when I halved the fluoxetine and rapid tapered the dexamphetamine,  the jolting, locking muscle symptoms disappeared. 
 

I didn’t keep a journal this time round. I’ll do my best. After the initial cut, I had a few days of feeling better, almost a euphoric feeling. I’ve heard that can happen. Then insomnia set in and got worse and worse (insomnia has been an ongoing issue). If I did sleep at all I’d be tormented by horrific nightmares. Bad akathisia set in about a month later but I wasn’t pacing this time. Screaming on the inside, agitated, irritable, hostile, feeling of rage, skin crawling, sandpaper eroding my insides, nerves and skin on fire, suicidal. I just wanted to die. Pure terror. The head pressure and pain got worse. It has eased a little now but I’m left with what I can only describe as a bruised, raw, inflamed brain. Thankfully the nausea or vertigo has not returned at this stage. 
 

 

Thank you, The benzo taper last year was brutal. I know I’m kindled And suffering PAWS from the multitude of drugs I’ve come off. K 🌸🙏

 

 

Hi Kristine, 

 

Sorry you've gone through such hell. Sometimes when people come off a benzo, they tend to have an increased rate of adverse reactions to other drugs, since the brake on their nervous system is gone. It may be that the jettisoning of the benzo resulted in the adverse reaction to fluoxetine and the serotonin syndrome-like symptoms. When I tapered, I got rid of the benzo first because I had somehow come to the conclusion that it was the biggest problem. I hadn't planned on getting rid of the other drugs right away, but I soon began having an adverse reaction to one, which I had to rapid taper, then the other (which I stupidly cold-turkeyed). Which left me in my current PAWS mess, although I've improved significantly. I didn't know much of anything.

 

I'm glad you are taking a break from tapering, you deserve it after getting down to one drug. I would just keep an eye on the Fluoxetine. I wouldn't expect any adverse reaction to it or anything, but it is a possibility. Any odd oscillations in your condition will hopefully just be transient, normal PAWS developments, and not anything inherently wrong with the current dose of Prozac. If something does happen, hopefully we can avoid the massive drop you had after the first adverse reaction. In the meantime, be kind to yourself and do the best you can with the coping techniques, and then we can start to think about getting you over the finish line after you have become much more stable. Congrats on escaping your polypharmacy : )

Edited July 18, 2020 by DataGuy

[FarmGirlWorks]

On 7/8/2020 at 3:12 PM, Kristine said:

yesterday I went to my GP for a new script etc...explained to her my WD symptoms and how I’ll be switching to a micro taper. Met with a puzzled look. No empathy. Then she said “it is unfortunate”, I said “No, it is not unfortunate. It was avoidable. It was unnecessary and therefore it is unethical “ ...think I need a new GP. Sigh 😔

You are amazing, @Kristine. To be that succinct, honest, and straight-up  “ballsy” to a doctor is an inspiration and testament to your inner power and life force. I really do hope to meet you after all this crap is done. I like your spirit so much. 
 

I was traveling to visit bio-father until yesterday so just saw this now. Air travel in the time of Covid is no joke, stressful and tense; one guy was wearing a dry cleaner bag and had wrapped his hands in plastic. I am fatigued but — knock on wood — okay WD-wise. Tend to go down after a trip but so far, so good.

 

The song is beautiful and I teared up: thanks for introducing her. Yeah, a safe place to land definitely applies to WD. I know you’ll make it even though it is horridly terrible now. I see you, someday in the future, swimming in the ocean, cool water sliding by, and you smiling because the hell you endured is so far away in the past.

 

NTMF

Edited July 11, 2020 by FarmGirlWorks

[neroli]

Hello Kristine

 

I hope things have settled a bit by now.  Just wanted to say hello and am thinking of you.

 

I play Sara Bareilles every night now. You have given me a song of strength, so thank you.  You are strong.

 

Neroli 💜

[neroli]

Hello Kristine

 

Just here to send you some 💜.  Hope things are easing a bit.

 

Neroli

[wantrelief]

I am thinking of you too, dear Kristine.  Sending you much love, WR.💖

[Rosetta]

Kristine, I wanted to say hi.  I hope you are ok. -Rosetta

[neroli]

Hello Kristine

 

Must be time to send a bit more 💜💜💜 over the ditch.  Thinking of you and hoping there is some respite at times.

 

Neroli

[Rabe]

Kristine I wanted you to know I am thinking about you and hoping that holding on your taper has made a difference for you and that you are feeling better somehow.  You are so so strong, so special and such a tender soul.   A true gift!!!  Miss you!  Take care!!💜

[Carmie]

Hi Kristine, 

 

Thinking of you and sending hugs🤗🤗

[neroli]

Hello Kristine

 

Just played Sara Bareilles again - so I thought of you.

 

Wishing you the best.

 

💜

[Rosetta]

Thinking of you, Kristine. 💜

[manymoretodays]

((((((Kristine)))))))  Me too.  I was reading through some of the early posts in your Introduction today.

I miss you!

 

L, P, H, and G,

mmt, and a nice cuppa chamomile lavender tea, on the finest china today!  ❤️

[neroli]

Thinking of you Kristine

 

💜

[wantrelief]

Me too, dear friend.....you are in my thoughts and heart.  Much love, WR 💖

[neroli]

💜

[Rosetta]

Oh, Kristine.  I hope you are all right.  We miss you, and we are concerned, of course.  I hope you will be able to update soon.

 

All my love, Rosetta

[wantrelief]

Hi Kristine ~ I think about all of the time.  I hope you are doing ok.  

 

Much love,

WR

[Marmot]

Hey Kristine, Still thinking about you. 💗

[Rosetta]

Me, too.  I hope we hear from you soon.  Take care, R

[wantrelief]

Me three.  Much much love to you,  WR. 💗

[Carmie]

Hi Kristine, 

 

Was just wondering how you’ve been doing💛

[Kristine]

Dearest @wantrelief , @neroli @FarmGirlWorks, @Rosetta , @Marmot , @Carmie and anyone else I have forgotten. I have lost count of the number of times I have returned here to update. I get overwhelmed and then am unable to write. There is so much to write. I’m still tapering the fluoxetine (see sig) I anticipate another 12 months tapering.  I’m on the homeward stretch but it is oh so tough. I’m exhausted but my health is slowly improving. I just wanted to touch base and let everyone know I’m still ticking. The update is on the horizon.  Just know you are all very dear to me. Love always, Kristine 💜💜💜💜💜

[wantrelief]

Kristine!  So good to hear from you and to hear that your health is slowly improving - that is wonderful! news!  I think of you often.  Much much love, WR