Giulietta

[brassmonkey]

When you transferred to the "compounded liquid" was the liquid made by a local pharmacy using powder that was removed from capsules? or was it made by diluting the commercially available liquid?  Did your WD symptoms start immediately after switching or did they take several weeks/months to show up? 

[Giulietta]

10 hours ago, brassmonkey said:

When you transferred to the "compounded liquid" was the liquid made by a local pharmacy using powder that was removed from capsules?

 

The liquid compound was made by a local pharmacy.  They opened the duloxetine capsules, removed the pellets and crushed them - so that is how they got the powder. They then put in an oil-based suspension (almond oil).

 

My symptoms began two days after transitioning to the liquid.

• The 2nd day I had anxiety and couldn't get to sleep -
• The 3rd  day - a recurrent pattern of tinnitus started, shakiness, anxiety and panickyness, tremors and insomnia started. Amidst the misery I did have days where I 'felt overall better but still tinnitus.' 

I documented my symptoms from the day of the drop on 12/15/2018.

 

Thank you.

[Giulietta]

Update:

Yesterday afternoon and evening were highly unpleasant. Starting around 3 pm I experienced  jitteryiness/tremors that I wondered if I forgot to take my meds. Checked and I had not.  Anxiety, feeling normal happy self, and feelings of despair and what feels like elevated heartrate and breathing alternated from 3 through bedtime. Awoke this morning and yesterday morning with anxiety.  

 

This afternoon perhaps also stressful around reinstating (?) and how much (?). Anything to do with meds (starting, stopping, changing doses, etc.) always wigs me out.  I don't want to make symptoms worse but I would like to feel better.  I don't want to relapse either. Yeesh.

 

I am thankful BrassMonkey is advising me.

 

[Rhiannon]

That happens to me too sometimes, getting hit with what feels like "I didn't take my meds" when I actually did.

 

 

[Giulietta]

@Rhiannon

 

It really is unnnerving, isn't it and disappointing when you've found you didn't forget your meds and are just going to feel lousy. 😎

[brassmonkey]

That's what I needed to know.  I need to talk this over with the other mods as there are several other drugs involved. I'll get back to you.

[Giulietta]

Thank you 😉

 

[ShiningLight]

Oh Guilietta, I am sorry to hear that you've been feeling poorly! The jitters and tremors are really tough. Those are some of my most dreaded symptoms. However, I do realize that I say that about pretty much every symptom when it's bad!

 

Hang in there. Does anything in particular help you cope with them? Glad you have the assistance of Brass Monkey!

[Giulietta]

Hello @ShiningLight

 

 

The jitters and tremors are one of my most unpleasant symptoms as well. They can last for hours - coming and going in waves. Is this 'panic' or something else? Sometimes my heart seemed to thumping too and breathing more shallow.

 

As far as coping? Tricky question.

• At night - it was  about 8 - I got into  bed and doubled by 15# weighted blanket and crawled under it while listening to something distracting and sort or relaxing on TV. It subsided after about 30 minutes or so when I started to doze. Whether the blanket helped or it ran its course - I don't know.  I will try that again at my next opportunity and report back!
• During the day it is more problematic - I try to distract myself and I think I get up and move around.

 

What (if anything) works for you?

 

Here's to a good day and thanks for the kind thoughts,

 

Guilietta

[ShiningLight]

Time is the only thing I know for that. It's probably neurological.

[Giulietta]

I just came across this re: self-improvement - on getting this done...it has 18K likes - but I haven't watched it

 

https://www.youtube.com/watch?v=aHDvEfiSipo

 

 

[Giulietta]

33 minutes ago, ShiningLight said:

Time is the only thing I know for that. It's probably neurological.

 

Could be right. Maybe somethign to look into.

[Erell]

Hi Guilietta

 

I wanted To come here To thank you for your support. 

 

How are you Today?

 

Wish my best!

[Giulietta]

Hello Erell,

 

Thank you for stopping by!

 

I am doing OK -  my symptoms are not bad thus far - tingling/burning  sensations  in my arms and hands and  fatigue (maybe because 4 hours sleep last night!) - but no real complaints.   Tonight I will tonight try to relax more, have positive thoughts only and not be on the computer!  Even though I have blue light blocking glasses which I wear at night when watching TV or on the computer - being on the computer beyond 7 pm isn't such a hot idea for me.

 

It is hard to tell the friends I feel more comfortable with (2 so far besides 2 family members since August 2018) what I am going through - and that I need reassurance. Since they don't understand - even though they may be supportive - that makes it challenging. I try to tell them that millions of people are and have gone through this and why.

 

I did what was apparently a cold-taper off duloxetine (cymbalta) in December 2018 and now trying to decide if I should take a little more or stay where I am.  The moderators here will give me their opinions and the MD has given me his. It's really stressful for me.  😉

 

You have a lot of friends on here whom you haven't even met yet!

 

Guilietta

 

[Erell]

Hi Guilietta 

Oh I understand so Well how it is difficult for you To explain your situation To your friends ! ( just for example, my mom thinks it is just because I'm not really wanting to feel good 🤔).

However I have the feeling we may have a role To play in this sanitary scandal : by trying To explain others, even if they don't understand, we might be doing some sort of prevention...

 

Hope you Will soon have some advices from mods!

 

Good idea To relax tonight: I don't know if it can help you,  but I've noticed that positive thoughts are stronger for me when I write them, or tell them outloud...

 

All my best wishes!

[brassmonkey]

For the reinstating, it's all coming down to how bad you feel.  If your symptoms are intolerable, as in you can't function at all, then a very small reinstatement might help.  I would start at 1mgai and see how things go.  Because of the way they formulated and made the compounded liquid you've basically not been getting any medication since you started using it. I think the 5mgai that the doctor is recommending is going to be a shock to your system and could cause more problems.  To reintroduce it now that your body is getting use to not having it could make things worse.  If at all possible I would ride it out as is. All I can do is give information and make suggestions the final decision will be up to you.

[Erell]

Hi Guilietta!

 

Sorry, I've been quite silent here Today!

How are you doing? 

Did you take a decision about reinstatement?

 

I send you my warmest wishes, and really hope you Will Feel some improvments soon! 

 

I know it's still afternoon for you,  have a sweet day 😙

 

[Giulietta]

Hello Erell,

 

How are you today? Feeling better? I hope you got to the seaside.

 

I have not yet decided about taking 1 mg or .5 or what yet. Since BrassMonkey's response - I haven't decided waht to do - other than to ask the MD his rationale and expected outcome of giving me 5mg.  This will be tricky because I don't waant to burn bridges. This afternoon I'll have to write him an email. This is a new model of medical care for a lot of MDs and big hospitals here - communicate via a patient portal or have an e-appointment.

 

It's a lovely sunny day here today so I am looking for to a short walk.

 

Giuilietta

[Erell]

Hi Guilietta!

No, I did'nt go To the seaside : staying outside my flat is still complicated for me, as driving my car.

But hope I Will soon!

 

Really, virtual appointments ? Sounds crazy To me. But maybe it Will also be like this in France in the future. 

 

Keep us in touch about what you decide, and how you're doing!

 

Have a good sunny walk

[Giulietta]

Hello @brassmonkey

 

Thank you for your information.

 

It has taken me a while to 'process' next steps and think things through. 

 

Your response makes sense to me but I may not have grasped the big picture.

 

I have not been incapacitated by WD symptoms in about 10 days and I am managing.  I was limited over 2 weeks in August - and also over 2 utterly horrific weeks in June.  I thought I was losing my mind in June and dont' remember in my life feeling so bad.

 

Do you think - I realize this not medical advice from you or SA -

• What is the likelihood that the worst of my WD systems be behind me, do you think? (Dec 2018 CT) 
• What is the likelihood that the bad days  be ameliorated by 1 mg. I would like to hang where I am but a few decent days give you the strength to say that.

At what point do you think is it too late to add .5 or 1 mg if symptoms become worse ? Is it a now or never thing?

 

You guys do a great job. There are so many combinations of people on different drugs, different tapering, CT situations, and unique responses. Thank you.

 

 

Guilietta

 

 

 

 

 

 

 

 

[Giulietta]

Hello @Erell

 

Good to stay in doors then while you stabilize and feel a bit better.  The seaside (and your car) are waiting for you. Are you watching youtube videos on make-up tutorials or something else you enjoy?

 

 I am looking forward to a little walk with my dog, who is 14. He doesn't walk very far but likes to be out on a stroll. He gets excited when he sees me reach for his leash 😎. He is  now dozing in the sun.

 

Discussing medications with your MD using an online portal is not how I like to practice medicine, either. It may be more convenient for the MDs. It is a  crazy way to dispense patient care, I agree. E-visits - maybe this is through  skype - are another option at this hospital- seem better because you can see their expressions and immediate response to questions. You can better tell what they think about an idea. 

 

Giuilietta

 

 

 

[Erell]

Hi sweet Guilietta!

 

I watched a lot vidéos Today..no make up, but silly things that make me laugh..Feel the need to laugh, even if it means spending time watching bad gags

 

Oh so great you have a dog ! What is his name? Dogs really are incredible companions! 

 

Yes, our occidental medical model is sick..! At least in France we have a very good system of healthcare insurance, but it is in danger. And french doctors or psy are meds dealer too. 

 

That is why a forum like this is so inspiring and important! As you wrote, Mods are making an incredible work here! 

Thank you either for all the kind words you have for many of us !

 

No more sun in Europe, night begin

wish you a sweet afternoon !

[Giulietta]

Hello Erell,

 

My little dog is a good boy - all white and a 20 pound bundle of love (most of the time). I just brushed him, which he does not like. 😉 If he doesn't like it, then I don't. His name is Angus. He is a good little companion.

 

Comedies really cheer me up - even a smile or laughter releases hormones that make us happier.  I think this is why people like situation comedies so much.

 

Medical care and Insurance here is expensive too and a lot of Americans (including me) pay for it.  Many prescription medications are very expensive (including the poison I'm trying to get off of). The goverment is supposed to be woreking on bringing the cost of them down.  One of my meds will not longer be covered on January 1 2020.    🤬

44 minutes ago, Erell said:

And french doctors or psy are meds dealer too. 

 

What do you mean? I didn't understand

 

I am grateful for the forum, the mods and everyone on it - since we can empathize and also shine hope for each other.

 

Have a pleasant night,

 

Giuilietta

 

 

[Giulietta]

Hello Erell,

 

People who have not personally experienced withdrawal from one of these 'SSRIs, SNRIs, benzos, tricyclic...' ADs - have no idea how horrible the physical effects are - and that we may get symptoms we didn't have before we started the 'medication.' 🤪 My father has seen me suffer through this - and he understands. I feel sad that he has to watch me go through this WD process because it's hard for parents to see their children hurt.

 

I think we talked about isolation earlier when we 'met.' and I have a few thoughts that may make you feel less alone. In addition to all of us on SA - People - who are not going through WD feel isolated and alone too. They may just feel that way or have some other issues they feel they must hide . Sometmes I feel I am the only one wtih this problem and I need to hide it from others so they will accept me. I sometimes feel that I am not as good as these other people. And this is plain wrong.

 

It is 7 pm here - so time for me to turn off the computer, start relaxing and having only positive thoughts. I write down what I am grateful for too and try to do this every night. Another skill to help with quieting your mind and getting ready to sleep is to 'just be.' For 20 minutes - focus on an image, a sound,  a feeling, a memory. Don't think. When you notice yourself thinking (for example, should I take more medication tomorrow? will I see my mother tomorrow?) - just let the thought go away and bring yourself back to the image, sound, or memory. The thoughts will still be there.

 

Giuilietta

 

[Erell]

Hi Guilietta!

 

Yes,  you're right : a lot of people Feel lonely. And we are as good others. How do we met then? Maybe there a times when it is too difficult To be around people, And we also have To accept this.

 

I like your 'just be' exercice  : there are times when I can practice it. And I agree, it can be a strong tool! There also are times when it is impossible To practice, I think, don't know  if I'm right.

 

I read you on other topics and find your words very true  : thank you for your presence here! There's also peace in your interventions, you seem To have a very positive mind! This is great ! And a good sign

[Giulietta]

33 minutes ago, Erell said:

How do we met then? Maybe there a times when it is too difficult To be around people, And we also have To accept this.

Fine question - which applies to anyone - as does your realization that there are times when we don't feel like being around other people or even talking on the phone. I admit to being introverted - so I don't like being around a lot of people and making small talk, etc. It takees a lot of e nergy and I much rather be doing something else.

 

One thing I have done is let people know that I am thinking of them - and ask them maybe something they may be excited about (for example, how is your grandkid or new apt?) I send a text message. I do want to let people / friends and famly I love/appreciate Know that I am thinking of them - as I am. 

 

I am glad dyou find my comments helpful. YOur bright personality adds a lot to our online community.

 

I hoep you are having a good day

 

[Erell]

I don't think I add anything To the community Today: I'm having an awfull day, full of terror and despair. 

 

I don't wanna use your topic To complain, so I hope I Will soon  be able To come here To Simply chat with you

 

Take care!

[Giulietta]

It's not complaining. We all have a lot of days when we feel down and worried and afraid.  Sometimes friends just listen when the other needs to 'vent' frustration, worry and anxiety. I know I have times when I don't feel well - and don't want to write anything on my thread. But this is one of the reasons we have the form - to support each other when we are down.

 

Hugs,

Giuilietta

[Erell]

I wish I could be a bit more like you : when I don't Feel Well, I overwrite things on my thread

 

You're so kind Guilietta, hope i'll be able soon To pay you back! 

 

Take care!

[Rhiannon]

On 9/24/2019 at 9:21 AM, Guilietta said:

@Rhiannon

 

It really is unnnerving, isn't it and disappointing when you've found you didn't forget your meds and are just going to feel lousy. 😎

Yes it is...sigh...

 

Just want to say hello. I enjoy your comments on my thread and Erell's and here. You have a gentle positive way about you that is all the more impressive given the suffering that you have been through and you are going through. I am inspired by your gentle strength. I also like the way you have of giving simple, gentle suggestions that are good and helpful and don't feel overwhelming. 🙂  Thank you!

 

 

[Giulietta]

Thank you for the many kind words. It is high praise indeed.  

 

4 hours ago, Rhiannon said:

I also like the way you have of giving simple, gentle suggestions that are good and helpful and don't feel overwhelming

 

That is really nice to hear.  The WD from duloxetine (and these other terrible drugs) is overwhelming. Understanding what is happening and why has helped me to cope. I keep reminding myself (when I remember!) that I am in the process of healing even when symptoms come for an unwanted visit.

 

I think we are all  grateful for your wisdom, guidance and clear explanations. 😊 

 

 

[Giulietta]

Thought I would update you on my observations about my current situation - i.e., how I am doing.

 

Everyone's 2 cents matters!

 

I reviewed my WD symptom and 'dose' tracker back to 8/27 and I am disappointed (or despondent?).  To be honest, I can't claim to have come very far over one month. There was incapacitating dizziness and acute vision trouble  8/27-9/12. That seemed to dominate. So, I forgot about the other issues: brain zaps, anxiety, neuro-emotions, tingling on scalp and limbs (limbs OK but scalp less so ), jitteriness, chills, and the everpresent tinnitus, which is much worse tonight.  In addition - my response to unpleasant situations (lack of progress on tasks for example) has caused anxiety.  Lack of motivation and self-discipline also causes anxiety given the lack of forward movement on things that are important.

 

Prior to starting to decrement doses of my liquid duloxetine on 9/25 I had all of the aforementioned symptoms. I understand this is PWD but 8 months in there is rarely a day free from them.

 

Mystery around  how much drug (whether it is 0, .2 or .8 mg) I am absorbing I continue to be unhappy with.  I really dislike uncertainty, indecision and lack of clarity particularly around medical issues. Because these toxins (marketed as medicines) are so potent that decreasing even my lame liquid by too much is something I do not want to do. From .8 to .4, etc. has implications I think and particularly on a sensitized nervous system. However, if I am at 0 - I could cease taking the orange liquid altogether.

 

I do not want to updose where there is a likelihood to exacerbate WD symptoms. Even taking .25 mg capsules (4 beads?) may be more than I am getting.

 

Am I over-thinking or catastrophizing this? 

 

Time to call it a day.

 

Be well everyone. ShiningLight, I hope your dystonia is better. Rhi, thank you for the kind words. Erell, I  hope tomorrow is easier for you.

 

Guilietta

 

[Erell]

Hi Guilietta!

Yes, I agree, what a strong woman is Rhi!

 

And so are you  : you have been, and are going through a lot and still have so much gentle and inspiring words for us!

 

I have To say I'm really not worried about you getting To manage your benzo WD  : you sound like you have thé exact way of thinking, and seems To have developped  a lot of tools! You're going To beat this:)

 

Lot of hugs!

[Bigbird]

12 hours ago, Guilietta said:

Thought I would update you on my observations about my current situation - i.e., how I am doing.

 

Everyone's 2 cents matters!

 

I reviewed my WD symptom and 'dose' tracker back to 8/27 and I am disappointed (or despondent?).  To be honest, I can't claim to have come very far over one month. There was incapacitating dizziness and acute vision trouble  8/27-9/12. That seemed to dominate. So, I forgot about the other issues: brain zaps, anxiety, neuro-emotions, tingling on scalp and limbs (limbs OK but scalp less so ), jitteriness, chills, and the everpresent tinnitus, which is much worse tonight.  In addition - my response to unpleasant situations (lack of progress on tasks for example) has caused anxiety.  Lack of motivation and self-discipline also causes anxiety given the lack of forward movement on things that are important.

 

Prior to starting to decrement doses of my liquid duloxetine on 9/25 I had all of the aforementioned symptoms. I understand this is PWD but 8 months in there is rarely a day free from them.

 

Mystery around  how much drug (whether it is 0, .2 or .8 mg) I am absorbing I continue to be unhappy with.  I really dislike uncertainty, indecision and lack of clarity particularly around medical issues. Because these toxins (marketed as medicines) are so potent that decreasing even my lame liquid by too much is something I do not want to do. From .8 to .4, etc. has implications I think and particularly on a sensitized nervous system. However, if I am at 0 - I could cease taking the orange liquid altogether.

 

I do not want to updose where there is a likelihood to exacerbate WD symptoms. Even taking .25 mg capsules (4 beads?) may be more than I am getting.

 

Am I over-thinking or catastrophizing this? 

 

Time to call it a day.

 

Be well everyone. ShiningLight, I hope your dystonia is better. Rhi, thank you for the kind words. Erell, I  hope tomorrow is easier for you.

 

Guilietta

 

Hey Guilietta, I have tinnitus also, it stinks. It started about two years ago when I tried to taper off  paroxetine again. It’s a little louder now that I'm in withdrawal from the paroxetine again. I also have the anxiety and stupid insomnia. You’ll get through this , just like we all will, I wish I could make time fly , but it seems so slow  when you want it to go by quickly. It’s tough getting  through this period in our lives, but we can do, especially supporting one another.  

[Rhiannon]

G, I'm confused between your sig line and your posts. It looks like you CT duloxetine last December is that right? And you are still taking a statin and gabapentin and clonazepam and lisinopril? What is the drug that you are concerned about whether you are getting 0.2 or 0.8 mg of and why are you not sure what you are getting? and is that the same one you mention 4 beads of?

 

"Am I over-thinking or catastrophizing this? "

Probably. 🙂

I'm not really certain what your history is since I'm confused about the sig line. However I do know a little about WD, and overthinking and catastrophizing is something we do a lot of in that state.

 

It can take a long time to get settled down and healed. Most people do get better though, especially if they focus on all the non-drug stuff and take gentle good care of themselves. It can take a few years though. I don't know your situation well enough to speculate if you might be an exception, but I bet you are not.

[Giulietta]

Hi Rhi,

 

Thank you for the thoughtful reply. 

 

5 hours ago, Rhiannon said:

What is the drug that you are concerned about whether you are getting 0.2 or 0.8 mg of and why are you not sure what you are getting?

 

The drug I am concerned about is duloxetine.   I don't know how much I am getting because it was compounded  as a liquid and it should never have been. I didn't really understand it until a month  ago (I admit to not gtting the message all the time).  ☹️ 

 

I had a level done and the result came back as <0-5 ng/mL (ref is 60-120).   I was told the level is 'undetectable.' (I thought I was taking 9 mg!).   Do you know what  undetectable means exactly?  Does it mean 0? or .5-4.9?

 

6 hours ago, Rhiannon said:

I'm confused between your sig line and your posts. It looks like you CT duloxetine last December is that right?

 

I thought I was tapering since December - but because of the lame liquid - it looks like it was a CT - maybe I got very little drug product.  I don't have any way of knowing the dose.  So this is why I said CT....  I didn't see Alto's post on tapering cymbalta until long after December😕 

 

7 hours ago, Rhiannon said:

However I do know a little about WD, and overthinking and catastrophizing is something we do a lot of in that state.

 

Yes - I think so.  I would anticipate that many people in WD (including me) may also be anxious because they do not want to make their lives worse if they can avoid it. Any changes to medication - unless medically necessary - are daunting (applies to me).

 

Here I advise people to get away from their computers at 7 pm and have positive thoughts - and it is 10.30 and I am sitting behind mine. 😳

 

A pleasant night to you, Rhi.

 

G.