ScottishLass: hello and some help please

[Rosetta]

So, you have you been taking 1 mg consistently everyday since April 8th? (Hopefully, at the same time each day.)
 

Could you put the updose to 2 mg in your signature with the date, please.

 

Please keep those notes this week.  Just put them on paper if that is all you can do.   It is really important to do that in the week after an updose. 

I would not updose again without posting notes and having a Mod’s input on the matter.  Some people never need to go above 2 mg.  It’s easier to taper from there, and the next updose to 3 mg might hurt you.   I would stay at 2 for quite a while — weeks even.

 

I hope today is better for you.

 

Hi @hayduke Thanks for being here, too.

[ScottishLass]

@Rosetta 

yes and just today I upped it by 1mg to 2mg out of panic. Idknw. I’m not sure if to do it again tomorrow or not? Whether to just continue with 1mg. Current state of things seems it can’t get worse but who fricking knows. I know because I haven’t been putting lists no one can help. Stupid I know but I will work on that now and yes I will add to signature of course. Thanks Rosetta 🙏🏻🌸

[Rosetta]

Ok, Scottish Lass, I’m going to be really blunt, all right?  I understand how brain fog and panic and this chemical anxiety can cause one to make rash decisions based on the panic du jour.  I have made my share of dangerous mistakes.  I made many.   I didn’t know this forum existed when my baby was born.  I trusted doctors.  I didn’t know it existed when I quit Zoloft or took Xanax or took Trazodone.  I thought these drugs were safe.  I thought doctor knew what they were doing. I updosed the Zoloft every time I had a bad wave.  My doctor was clueless.

 

Things can get worse, much, much worse.  You are playing with fire, and that is no exaggeration.  You cannot updose when you have a bad wave.  An increase of 100% from 1 mg to 2 mg is quite an increase.  It might be something your system can handle.  If your body is ready for it, it’s ok.  If it’s not, then it may only increase your symptoms a little or a lot.  We don’t know.  We have no way of knowing how your body is reacting to the 1 mg right now because windows and waves happen regardless.

 

Getofflex is aware of how to look at the notes.  I’m not, but I do know which actions have a high potential for worsening your condition.

 

You said that Tuesday, May 4th was an ok day.  That is very encouraging.  That means you system can be calmer for a few hours.  However, you need more data before you risk an updose.  Gettofflex can’t tell you if it’s time for a re-evaluation without the notes.  You understand this intellectually.  Now you need to be more afraid of what a premature updose will do than what the next wave may bring.  
 

In my opinion, if you are too anxious and your moods are too erratic to post notes, then you are not ready for an updose.  You must not updose and then down dose after the drug gets to steady state over 4 days.  That is playing basketball with your brain.  If I were you, I would go back to 1 mg, and only after you can post enough notes to get advice would I change the dose.
 

I am terribly distressed that this information is not coming from a doctor with a medical degree and experience with your condition.  It is a terrible injustice that doctors can get us hooked on this stuff and then have no idea how to help us when WD sets in.  That is why SA follows a “harm reduction” philosophy.  We are trying to let people know how to deal with their WD dysautonomia in a way that is least likely to intensify the dysautonomia.  It’s the only way we have.  More is not better when a person’s nervous system is dysregulated.  The system pushes back against every drug you give it.  The push back is less intense if the increase in dose is made after the system has calmed somewhat.  It is also less intense when tiny amounts are used.

 

You are a typical SA member in the beginning of your journey.  You are struggling with a condition that affects your brain.  You don’t know if you can trust what we say.  You are desperate to stop the misery of WD.  You are having a very hard time with the fact that improvement is not linear.  This is all normal in people new to SA.  The people who benefit sooner are the people who stop giving in to their impulsive responses to the off-the-charts chemical anxiety caused by withdrawal.

Waiting longer to change your dose will not make your distress last longer in the grand scheme of things.  It’s a bit like the driver who passes you on the shoulder and then comes to the red stoplight 300 feet down the road.  He gained nothing, but he risked being delayed by an hour or more due to an accident  just to be in front of you.  He might have ended up in the hospital.  We might end up in the hospital if we can’t be patient with recovery from ADWD.

 

I hope that all makes sense.  I know this is all a lot to take in, it’s very confusing, and it goes against everything you know about recovery from disease.  Drugs fix things; they are safe; more is better; more, faster, sooner will lead to a faster recovery?  Not in this case.  It’s the opposite quite often.

[ScottishLass]

@Rosetta

ok I hear, thank you.  Sorry if I made you angry. I’m just trying to do the best to manage not falling down an even bigger hole, which this ongoing state feels like it will do to me. I don’t know how bad it has to get before a small increase to manage WD and then taper more slowly would be considered the right thing to do to manage and then come off with a slower taper.  

I have to get into a position where I can manage back at work...quick. I just thought 1mg increase was what would be recommended....thought that was the smallest amount to do. I also thought someone said it would be an idea but I’ve read that wrong maybe. I don’t think drugs are safe..at all. They terrify me now and they have ***** my life and head/body up.  I need to do the daily notes. I know. Everything’s starting to click together. I’m just trying to get out the hole which I now seem to be in which is taking me to the edge of not wanting to be here more and more. Terrible consistent thoughts I’ve never had like this. I’m trying to get out of that. (I’m not going to do anything stupid.  Trying to stop that. I see though I’ve misconstrued, not thought through.  

Thanks and sorry for stupidity

sl

[Rosetta]

I’m not angry with you at all.  Please don’t worry about that.  I’m angry at the people who profit from this insanity and ignore the “do no harm” part of their oaths.

This extra 1 mg may not hurt you.  You may be fine.  If you don’t take it for 4 days or more to let it get to steady state we will never know the overall impact of what an updose right now might have done.  
 

We don’t know at this point if it’s safe for you to updose, but I notice that if a person up doses too quick and “gets away with it,” the person tends to try it again in the next bad wave.  The panic can be so great at times.  Eventually, the person will pass that lowest dose for effective amelioration of WD syndrome symptoms.   That can be merely unfortunate (in that the taper will take a bit longer) or it can increase the degree of dysautonomia.  
 

It’s a part of this syndrome to have intrusive thoughts and see everything as catastrophic.  After many intrusive thoughts about “what if I need a higher dose,” “I need this to be over now,” “I have to work,” the temptation is too great.  Only fear of getting worse stopped me from reinstating well past the date it was safe to do so.

[Crochet]

@ScottishLassSending support through the internet.  This experience is terrifying and it takes some time to get your footing.

[ScottishLass]

 

 @Rosetta

Thanks.

And I return the kind thoughts to you @Crochet

[Rosetta]

I’m sorry I sounded so harsh.  At times, it seems like the only way to cut through the anxiety and the noise created by the desperate need that people have to “do something” about their conditions.  That feeling of not wanting to be here — I know it well.  You do want to be here, but you want the pain to stop.  It becomes hard to separate the two when pain is a constant companion.  Anxiety is painful.  A lot of other parts of WD are painful, both physically and otherwise.  There are times when we feel as if there is nothing but pain.

 

During a wave, the brain is telling us this pain is all there is and all there ever will be.  Ths body’s fight or flight response is in overdrive.  “Do something!” “Move, run, hide,” or “fight back.”  The fact that taking a step back and making a calm, calculated assessment of the situation is absolutely necessary does not mesh well with the very condition for which we need that calmness, does it?  
 

At some point, you are going to be capable of being in a wave but still remembering that your last window was real, it existed, and another one will come.  The fight/flight response will have calmed down enough to make this possible.  The number of times you have been in and out of waves will help you to believe another window will come.  Until then you have to hold on for dear life.  Journaling about these windows is a good way to etch then into your memory.  Not only can you look back at the journal, but the act of writing down your positive thoughts and calmer periods will help you to commit them to long term memory.  It will be easier to access these memories when you are in a wave that has you terrified.

 

Oh, I’m so sorry this has happened to you.  You will get through it!

[ScottishLass]

@Rosetta

its absolutely ok and Thankyou 🙏🏻 for your messages. Sorry, if I appeared oversensitive 🙄(...irony). You are right and I needed to hear it.  I’m fighting against myself to try and FIX things and not be a victim and desperately be ‘normal’ and in that fight inadvertently making things much harder for myself. It’s just such a MASSIVE acceptance and shift in my head I have to make about where I am and the unpredictability of it all. That’s whats killing me. BUT, ive just sat and cried, tried to take the panic out of the cry, the feelings of dread...   and I feel a tiny bit of relief. I can maybe do this. X 🙏🏻

[ScottishLass]

[hayduke]

Yep apologies @ScottishLass and @Rosetta - I missed that you'd already reinstated.  

 

Rosetta's got you - once you're steady, even though it sucks, you can work out which amount to shoot for next.  Minimising changes, especially big changes, is what our bodies respond better to.

 

 

[hayduke]

Also gonna share the wonderful Claire Weekes' work for you @ScottishLass

 

A long time fave here for navigating the anxiety we all know way too well

 

Cheers

[Rosetta]

You’re welcome.  I can’t tell you what exactly to do about reinstating, but the Mods can.  You are going to be fine.  I can’t say it will be fun, but you are going to be fine.  It takes a while to accept that this is happening.  There is a process of grieving.  Also, some people get better so much faster than others.  No one can account for all the reasons that might be.

[ScottishLass]

@hayduke thank you your suggestions are v welcome and I will look up Claire Weekes. Try and get on top of this ****.

@Rosetta thats so true about fear that the last window wasn’t real....when you’re in a wave. Seeing that written down makes me understand and rationalise  my panic a bit more.  In the meantime I need to manage that anxiety (as @hayduke also highlights).  Attempt to control what I can, not what I can’t. You guys are good! 

 

(And just for my own release....I ******* HATE THIS SITUATION. I AM ANGRY AND SCARED AND SAD TO MY SOUL WITH LOSS. Last night (its 5am here) was mostly sleepless, with waves of absolute fear (of what in the moment I don’t know....and this fricking awful restless body and leg thing). This morning is more tears, dread, pity that I can’t keep doing this.  How can you. Exhausting.  But one part of me believes, has a slither of hope. I’ll hang on to that I guess.  Not much else I can do). 

 

JHC...is all this actually real. 

 

SL 

ps sorry for moaning.  I just have to release it  somewhere and there is nowhere to do that in rl.   Acutely aware of the immense good people are doing on here for others and my inability to return that. 

X

[Altostrata]

Much as the staff would like to help, we have to see those daily notes before advising on a change in dosage. Otherwise, it's anyone's guess.

 

Ups and downs in mood are not what we're looking for in your daily notes. What we want is the times of day (o'clock) you take your drugs, their dosages, and any unusual symptoms in between, 24 hours at a time.

[ScottishLass]

Yes I’m doing that now.

I’m aware that my feelings are not of anyone’s concern and believe me I feel no pride at sharing them. I was just trying to keep myself going, afloat. I thought that given it was a peer support site I would not need to hide my emotions and moods like I’m having to try to do in rl . However, if what I’m writing is not welcome here or judged I can stop.

 

[Rosetta]

SL,

 

You can share your feelings in other posts besides your daily notes and get support.  Members other than the mods are those who will support you on an emotional level.   It’s what I do when I feel well enough to do it.  Some mods can help in that way and others can’t.
 

The daily notes need to be cleaner.

It is necessary that the daily notes are free of long discussions of emotional symptoms.  There’s a thread here about how to write the notes.  It’s the position of the symptom on the timeline in relation to the time you take your dose that matters.  Or, if your notes show no concerns you might be ready for an updose.
 

You can use initials or abbreviations.  DP and DR are examples of psychological symptoms that are infrequent for some and common for others — derealization and depersonalization.  SI can be noted with the initials, too.  Initials help the notes stay easy to read.  If your anxiety level goes way, way up, note that.  Put down your symptoms by their names, for example: sadness, fear, terror, afraid to go outside, anxiety, sleepiness, afraid to see people, light sensitivity.  Then, if there is a pattern, the mod will see it after a few days.  It’s possible that the mod will ask questions about anything that is of concern, and you can elaborate in your answer.

 

Your physical symptoms after you take your doses may show a pattern that is important: restless legs, no appetite, tinnitus, heartburn, low blood sugar, dizziness, muscle tension, blurry vision, headaches, the list goes on and on.  

 

The mods are stretched thin most of the time, and yet they have to read every post to moderate the forum.  It’s hard for them to see suffering and have no way to help.  They are often people who are struggling through long tapers and difficult emotional ups and downs themselves.  If your reinstatement dose is not providing any relief, but the information isn’t there to suggest that it may be safe to raise the dose, that’s hard for you and for the mod assigned to monitor your thread.  The last thing anyone wants is to suggest an updose and then see the person get worse.  So, the senior mods encourage the members who are reinstating or changing doses to post their notes.

 

 

Hang in there.  The thread about neuroemotions made me feel less alone.  I had a terrible time with those.    I still have them sometimes, but they are easier to dismiss.  Feeling intense emotions — usually negatives ones — is one of the most challenging parts of WD for most of us.

 

 

[ScottishLass]

Sorry, I didn’t mean to make things difficult re daily notes or for outburst. 

[Rosetta]

It’s ok.  You remind me so much of myself.  I didn’t record all of the hell I went through here.  I was afraid of how people would react.  It was bad.  Really, really bad.  I would have been so frustrating to the mods, I know. Sometimes, I record memories in my thread of that time.  They are scattered throughout my thread.  My poor husband was so frustrated.

 

I don’t want you to feel guilty.  We are here for people just like you.  I was hoping that if you could see the logic and reasoning behind the request that you could have some sort of realization that the effort could be worth it.  
 

Are you afraid that you can’t do it properly? Do you have anxiety when you think about trying to write it all down?  Or is it fatigue that makes it so hard. Or both?  I’m a perfectionist.  WD made that worse — so much worse.  It took me hours to do simple things back then.  The fatigue on top of that made it worse.  I’m not sure I could have done notes unless I felt that it was the only way I could get out of the misery.  It would have been the only way if reinstatement was a possibility for me.

 

I didn’t have the option to reinstate.  I was too far out.  So, it didn’t really matter.  The mods couldn’t help me.  I want you to have that chance to feel better, and I hope you can do the notes.  There was a time that I could not have done it.  There were a lot of things I couldn’t do to take care of myself.  I was a mess.  
 

Is there anyone who can help you in any way?  Are you eating?  Is someone making food for you?

[Altostrata]

8 hours ago, ScottishLass said:

Yes I’m doing that now.

I’m aware that my feelings are not of anyone’s concern and believe me I feel no pride at sharing them. I was just trying to keep myself going, afloat. I thought that given it was a peer support site I would not need to hide my emotions and moods like I’m having to try to do in rl . However, if what I’m writing is not welcome here or judged I can stop.

 

 

Everyone is concerned about your feelings but it's the other symptoms that will help us figure out where you want to go with your drug dosage, a question you ask repeatedly. 

 

If you want concrete, practical advice about your DRUGS, we will need to see daily symptom notes.

[ScottishLass]

Sat 8th May 2021

9.30am - Get up. Take 1mg Duloxetine and Omega, Mag Supplements

10.30 - Spontaneous crying.

10.45 - Diarrhoea. Stomach ache. 

11.am Anxiety over future

Explosive/irritable +++ with partner. 

1200 Eat 

1300  Fearful. Struggling to leave home. Stay in. Paint.

1315 DP

1400 to 1700 Fatigue ++

v stiff muscles. 

1800 Eat 

2230 Go to bed - awake

2330 RLS, and restlessness in body

Midnight- Burning sensation increases in hands

0100- RLS/ body continues and rumination

0200 Anxiety++/fear. SI

0300 RLS/body restlessess subsides a little

0400 tears

0500 sleep/nightmare at some point

0945 Get up. Take Duloxetine 1mg. 

 

SL

Is this documentation ok..can I continue like this if able? 

Thanks

(Sorry for previous outburst). 

 

 

 

 

[Rosetta]

Hi Scottish Lass,

 

Over 4 hours of sleep?  That’s good.  I can see you had a hard night.  I’m sorry to see that.  I remember those so well.  Sleeping until 9:30 good, too. It could mean your system is calming down or that you are worn out, but either way that a good amount of sleep for WD at this point.  I’m sure it feels as if it’s horrendously inadequate.

 

Your notes look good.  Great job taking the D in time.

 

((Scottish Lass)).  Thanks for your note on my thread.  I’ve had the headaches come back, and I have a head cold.  So, reading hurts, but I wanted to provide a little encouragement to you.  I may not be as active, but I’ll keep checking on you.  Hang in there, dear!
 

💜Rosetta

[ScottishLass]

Thanks, it wasn't solid sleep from 5...maybe should have been more detailed...up fortoilet  couple times and lay thinking from 8am. Och well. 

 

Sunday 9th May 2021

09.45 - Take Duloxetine 1mg, mood low, verge of tears 

10.00 Diarrhoea, stomach ache

11.30 - irritable ++++ explosive outburst

1300 Eat lunch

1400 muscles aches and stiff ++

1500 isolated self but ok period until eve

1800 Eat tea, muscles sore and stiff

2300 Bed - Awake

0200 - 0400  RLs and body agitation.

0400  coughing, and

panic feelings++, 

0500  sleep (up to loo once)

0700 wake but doze till 0800

0800 up but pretty disconnected 

1000am  take Duloxetine 1mg 

 

SL

 

 

 

 

 

 

 

 

 

 

[Rosetta]

Taking your AD at the same time everyday is hard to do, I know, but very important.  I don’t know if the 15 minutes differences over the last few days are a problem or not. Maybe you could set and alarm for 10?
 

I’m sorry your sleep is so broken.  
 

Mornings are going to be hard.  Having explosive outbursts was very common for me.  The tension would build after I woke up, and eventually something happened to make me feel that I couldn’t contained it.  It could be a very small thing that happened or a thought.  
 

I struggled with low blood sugar.  It was very important that I ate breakfast and had protein with every meal.  I would eat cheese or salami when I woke up in the night to try to keep my blood sugar even.  Having cheese and cold cuts on hand at all times was important.  I would try to eat 6 small meals, but lack of appetite and fatigue got in the way, at times.

Sugar and caffeine were not good for me.  Having food with tea is good because the caffeine is released into the body more slowly.  To stop drinking coffee suddenly did not seem like a good idea either.  You could get some decaf tea and slow switch over by mixing decaf and regular.  Slowly dropping the amount of sugar could help, too.  I was never able to quit having sugar, but I think it would have been very beneficial.

 

The worst for me was not eating a good breakfast with protein.  I had more meltdowns, and they were more intense.  If I forced down breakfast, I wasn’t hungry for lunch.  All these things that used to be optional or have minor consequences became important at a time when I was so compromised.

[ScottishLass]

@Altostrataand anyone with advice. 

Last year I had to take oral corticosteroids, prednisolone(4mths) and an antibiotic for a skin condition (which was supposedly long term-ish use) but things got better and I stopped the AB) and managed the rashes with creams. I know this is not a medical site but I have seen bits and pieces on here about AB use and difficulties with WD. My skin has flared massively over last weeks and the option to manage it is AB for a few months.  I am terrified to take anything that could make WD worse. Can anyone shine a light on what the issues are with LT AB use and AD withdrawal ??? What are the dangers/concerns ?

Thanks in advance

SL

[Nomansland]

Hello @ScottishLass,

 

i found this post from ChessieCat very helpful, regarding antibiotics. She also pointed to a thread about this type of medicine.

 

 

Greetings

 

Nomansland

 

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2021 IMPORTANT WITHDRAWAL SURVEY, PLEASE PARTICIPATE: https://uelpsych.eu.qualtrics.com/jfe/form/SV_0AR9IsQ61jsiXBk

[Altostrata]

Sometimes people whose nervous systems are sensitized by withdrawal have bad reactions to antibiotics.

 

How are you taking 1mg fluoxetine? Do you always get a stomach upset afterward?

[ScottishLass]

@Nomansland thank u 🙏🏻

@Altostrata it’s Duloxetine I’m taking. I do get stomach/diarrhoea issues lately but can’t work out if that is Duloxetine, anxiety etc etc...I did stop Magnesium as I thought it was that but it continued. I am allergic to a couple of AB’s.  I was more concerned when I was reading bits and pieces if it would make  the emotional AD WD symptoms worse.  I would rather have sore skin and rashes than make that worse. Sorry, I couldn’t work out if that what was being said. 

Thanks 🙏🏻 

 

[ScottishLass]

@Rosetta

thanks 🙏🏻

Yes, I think whilst I am managing to eat some lunch and dinner it’s a good shout to consider breakfast, diet etc. I rarely have an appetite first thing so am not eating breakfast but may try some porridge oats or something. In the past in general when I have made a concerted effort to eat breakfast I have felt more energised. Thinking about the gap I have - i.e no food between 6pm and usually 1pm ish following day, that’s a good 16 hrs with nothing!!! Maybe not so good.

I don’t drink much coffee at all. I do drink tea but do add  de-caffeinated into the mix. 

Yes, my sleep is still really terrible. Not too sure what I do with that.  

Had a bit of a melt down today and think I am going to move out  and manage this  WD myself, too stressful with my partner.  

I hope your headaches are better Rosetta! 

SL 

 

[Altostrata]

How are you measuring 1mg duloxetine? (My browser changes this to fluoxetine.)

[ScottishLass]

@Altostrata

By decanting 6 beads from a 60mg tablet and taking in gelatin capsule as advised here. Why?

SL

[Altostrata]

Because I'm trying to figure out if it's upsetting your gut.

[ScottishLass]

Monday 10th May

10am Take 1mg Duloxetine

11ish Diarrhoea, stomach ache.

Mid morning anger/ ruminations about WD 

Drive partner to Covid Vacc. 

1300 lunch 

1400 fatigue

1500 stiff sore muscles and joints. 

1600 online meeting and then Meltdown - triggered by external noise. Hypersensitive to noise a lot +++ at moment. Problem.

1800 Dinner

1900 Exhaustion. SI thoughts

2000 stiff, sore muscles and joints

2300 Go to bed. Awake. 

0100 still awake. RLS and body agitation

0200 get up and make tea. 

0245 back to bed.  Upset, tears at situation. Worry. 

0400 Sleep, up for toilet 

0700 Awake, low mood, tears.

Lay in bed

1100 Get up, take Duloxetine 1 mg 

SL

 

 

 

 

 

 

 

 

[ScottishLass]

Tuesday 11th May

11am Take 1 mg Duloxetine

1300 Lunch 

1330 Diarrhoea 

1700 Zoom call

1900 Emotional meltdown

2000 Go up to bedroom. Distract with netflix

2100 RLS ++ inner body agitation. 

2200 burning sensation in hands

22.30 Panic at general situation 

0400 Sleep

up to toilet twice 

0800 wake

0900 RLS

SL

[Altostrata]

It appears duloxetine is causing gut upset. Can you take it with food and see if this helps?

 

11 hours ago, ScottishLass said:

Emotional meltdown

 

What do you get an emotional meltdown about?

 

11 hours ago, ScottishLass said:

Panic at general situation 

 

Going through this drug-induced rough patches causes most people to be upset. Getting frustrated, angry, or anxious over it adds to the drug-induced symptoms, making them worse. You have control over your reactions. Try to stay calm and remind yourself you will get through this.

[ScottishLass]

Thank you

Yes I will do that.

I am sorry but I do not feel I have full control anymore over my reactions when waves of terror ascend like I have never, ever experienced.  I do keep trying to remind myself I will get through it. Every minute of everyday I am trying to do that.  Over and over. I’m not sure I believe it anymore at all. It’s too much for too long. 

Please is someone able to advise re Updose of reinstatement yet. I can’t live like this. 

SL