neroli: is this benzo withdrawal, or other drugs interacting

[neroli]

14 hours ago, Rosetta said:

I don't know how to help, but I'm thinking of you.  (((Neroli)))

 

 

Thank you, Rosetta.

 

I doubt there is a clear answer - but I just wanted to download and see if there was any logic.

 

Hope you're doing ok - I haven't been over to your thread for a while.

 

Wishing you the very best

 

Neroli 💜

[neroli]

1 hour ago, Rabe said:

I have a list from a it ago and it has diazepam and escitalopram metabolized by same enzymes but not the nortriptyline...?  But sometimes a drug is an inducer or inhibitor of another drug and I cant locate that list right now.

 

Hello dear Rabe

 

Yes, the FDA labels implicate CYP34A and CYP2C19 in the pharmacokinetics of Escitalopram and Diazepam and CYP2D6 as a moderate inhibitor in Escitalopram, with P4502D6 only implicated in Nortriptyline. Now, I don't know how to read this technical stuff as a lay person, so have no idea really what it all means but it is different to enzymes shown in another interaction checker.

 

Thank you for thinking of me, PF, it's been a tough one today - super fatigue and anxiety as well as the legs.

 

I hope you're coping ok - must pop round again some time.

 

Thinking of you, too

 

Neroli 💜

[DMV64]

Popping in to say hello. Having a clearer thinking day (amazing) so just wanted to let you know I am thinking of you. Hope you are having a good day.

❤️

[neroli]

Thank you, @DMV64

 

I'm glad to hear you are having a clearer thinking day - it's so good to get a bit of a break.

 

'm feeling particularly shaky, fatigued and stiff in the legs today.  One of "those" days - bit scared by it, though.

 

So good of you to pop round.

 

Neroli 💜

[Rabe]

Hi Neroli...Im sorry for the symptoms being stronger today...it is all so scary and overwhelming.  I so wish I could wave a wand....please know that  I am thinking about you my dear PF and s hoping things calm down for you again soon!  Love and hugs Neroli!  💜

[neroli]

Hello dear @Rabe

 

Thank you so much.  I wish I had that wand for you, too, and everyone who is going through this mill.

 

I know that you have so much to cope with, so I keep you as an inspiration that these times can be got through.

 

much love you, PF 

 

💜

[Carmie]

On 6/14/2019 at 6:43 AM, neroli said:

Thank you, @DMV64

 

I'm glad to hear you are having a clearer thinking day - it's so good to get a bit of a break.

 

'm feeling particularly shaky, fatigued and stiff in the legs today.  One of "those" days - bit scared by it, though.

 

So good of you to pop round.

 

Neroli 💜

 

Hi Neroli, 

 

Sorry you’ve been having a scary day. This is quite a journey, isn’t it? I’m sorry you’re on so many meds too, the doctors certainly have a lot to answer for. 

 

I’ve been using my usual formula of Distractions! Distractions! Distractions! while going through waves. I’m glad I’ve got forward movement again though with the tapering, this year I’ve managed to get down from 7mg to 6.75mg. My drops are only small as I can only taper by tiny amounts, but I get excited when I see the numbers go down. I’ll probably be staying at this dose for 6 weeks to two months. Slow and steady does it. I’ll do another dance when I get down to 6.50mg💃💃😂

 

I hope you’re finding some joy in life. I’m off to a concert tonight, going to see Billy Ocean. Good old eighties music. Going out for dinner beforehand. Yummy.🎤🎸🎺🎷🎼🍜🍲🥘

 

Hope you have some better days, sending hugs🤗

[neroli]

Hello @Carmie

 

Nice of you to pop in, thank you.

 

I hope your concert is going well - you do love music, eh?  It's one of the things that has disappeared Into the "can't do that" hole for me, same as reading, since all this cr*p started.  I admire you even going out when you feel so drained of energy - good on you.

 

Today was better - at least I felt calm in the afternoon and a friend came round to see me this morning , so it's been a much easier day to deal with.

 

I'm being slack about gratitude lists at the moment but I do agree with you that Netflix is a good distraction.....so, I'm off now to continue watching Bloodline.

 

Wishing you the best, rock'n' roller

 

Neroli 💜

 

[Rabe]

Hi Neroli,

Happy to hear today is a better day for you!  Hope it might continue for you for a bit.  Cr*p is right!!😀👍

Love and hugs to you PF!! 💜

[neroli]

oh, thank you @Rabe

 

it's one of those days again - can barely walk and feeling shaky and woozy.  I'm hoping it eases up a bit during the day.

[Rabe]

Oh Neroli Im sorry. 😢 I hope it eases for you as well!  Please let us know.  UGH!💜

[neroli]

Notes: Legs eased up for a short while but have tightened again and are achy.  Had an anxiety bout in the afternoon and have been exhausted all day.  Not the easiest of days.

 

So, I've been slack  on gratitude (because, frankly, I haven't been feeling it, with symptoms seemingly worsening all the time) but here are a few:

 

• My friend took me shopping and I walked round the supermarket instead of sitting in the car while she did it.
• I managed to get all my meals for myself and clear up after myself.
• I did my laundry 
• I had a brief moment of just sitting with the sensations of the anxiety/exhaustion episode, telling myself they were just sensations, not that something was wrong (it helped to calm me down a bit)
• I can rest my legs in bed now and tomorrow may be different
• There was sunshine, so not too cold today
• Had a Skype call with friend

 

Best wishes and love to all - we are doing the best we can.

 

Neroli 💜

 

 

[Rosetta]

Hang in there Neroli.  I hope today was better. -R

[Carmie]

Thinking of you Neroli, 

 

I’m glad you were able to walk around with your friend and also have a Skype visit. I think interacting with friends is so important. I love my friends to bits. 

 

I’m sorry you’ve been having a rough time, I hope today was better for you, sending hugs🤗

[DMV64]

Thinking of you and love love love your ability to stop and find the gratitudes!

xo

DMV

[neroli]

Thank you @DMV64

 

I do my best - there are days when gratitude is pretty thin on the ground and it just about getting through that day.

 

I hope you are doing ok.  I'll pop round to your thread sometime.

 

I appreciate your thoughts.

 

Neroli 💜

[Rabe]

Just wanted you to know I am with you in my heart and spirit Neroli, as always.  Hoping the symptoms have let up even a bit for you!! Love and hugs to you PF! 💜

[neroli]

Hello dear @Rabe

 

Thank you for popping to my place and leaving your message of support.

 

The days vary - the hours can vary, too, as we all know too well.

 

At times I still cannot believe I am in this situation.

 

I hope you are finding some relief at some times, too.

 

I'm sorry I've been a bit lax at getting round to see how you're doing, will catch up with you sometime.

 

much love to you, my PF

 

Neroli 💜

[Carmie]

Hi there Neroli, 

 

I see you’re feeling pretty down at times. Yes, this certainly is a hard journey and sometimes it’s hard to see things we can be grateful for, but they are still there. ☀️☀️☀️

 

You will pick up again and begin the appreciate things around you. We can only take an hour at a time in this journey. I always think it would be great to know when our recovery date is, but that’s not possible. It’s day 16 since my last taper from 7mg to 6.75mg. It feels good when the numbers go down, even if it’s only down by a little bit. 

 

Yes, days and hours certainly vary. We can be feeling not too bad one minute, and then the next minute that big wave hits us again. We must be expert surfers by now.🏄🏻‍♀️🏄🏻‍♀️😄

 

Sending you hugs and hoping you can still find some things to be grateful for in the future 🤗

[neroli]

Hello @Carmie

 

Thank you for your warm wishes.

 

I seem to be getting heavier and achier legs and more anxiety pushing through - my level of activity has gone down quite a bit.

 

It's great that you are seeing your numbers go down - though I know you get the waves to deal with as well as the CFS.  You're a brave mistress of surfing!

 

Hugs back to you

 

Neroli 💜

[Carmie]

10 minutes ago, neroli said:

Hello @Carmie

 

Thank you for your warm wishes.

 

I seem to be getting heavier and achier legs and more anxiety pushing through - my level of activity has gone down quite a bit.

 

It's great that you are seeing your numbers go down - though I know you get the waves to deal with as well as the CFS.  You're a brave mistress of surfing!

 

Hugs back to you

 

Neroli 💜

 

Yes Neroli, 

 

I’ve been doing lots of surfing the waves🏄🏻‍♀️, plus surfing my health. Those waves keep coming🌊🌊. I’ve been in bed the last couple of days, but I’m looking forward to catching up with friends on the weekend. Let’s hope that happens. I did catch up with friends one night this week, but I ended up having to lie down in the end. It’s always encouraging to be with friends. They take me as I come.

 

I’m sorry your legs seem to be worse. You must have to sit down a lot. I’m always sitting down🛋, and if I get too weak and faint I have to lie down.🛏 When I’m out and about with friends I’m always sitting on the grass or in the gutter, or on the floor. When I’m really weak I can’t sit in a chair, I need to be on a lounge or on the floor. I’m going to the movies tomorrow, they’re pretty comfy chairs, I can lay back. 

 

Take care💚

[Rabe]

1 hour ago, neroli said:

The days vary - the hours can vary, too, as we all know too well.

Yes...it is SO hard to want to even get up because it is so hard to plan anything cause things can change so rapidly one way or another.

 

1 hour ago, neroli said:

At times I still cannot believe I am in this situation.

This is pretty much daily for me...it is SO hard to believe Neroli.  I so hope you feel better soon.

 

1 hour ago, neroli said:

I'm sorry I've been a bit lax at getting round to see how you're doing, will catch up with you sometime.

Do not worry Neroli...we are with each other whether on the sites or not...take good care of you!  Love and hugs again.  Wish I was there to give you a real hug Neroli.  💜

[Rosetta]

(((Neroli))). If only I could fix it for you!!!

[neroli]

2 hours ago, Rosetta said:

If only I could fix it for you!!!

 

Hello Rosetta, how lovely of you.  If you could fix it for me, we could probably fix it for everyone - now wouldn't that be something?

 

I'd like fix it for you, as well.  

 

Thank you for popping, it's nice to hear from you.

 

Hoping you're doing ok - I haven't caught up with you for a while.  Will do at some point.

 

All best wishes

 

Neroli 💜

[bubble]

Sorry to hear your struggle continues. Probably accompanied by a lot of battle fatigue... And fear of present and even more future. To tell you the truth I'm also getting horribly tired of it all. But we just have no choice. My symptoms are mostly mental so I can't really imagine what it would be like to be physically afflicted. 

 

But we see that this type of injury is reversible. Just takes an awful lot of time and patience. That's why being part of the group of these supportive fellow travellers is so important. I love your gratefulness  lists! This is the best we can do under the circumstances. Better times are coming. We just have to endure. Lots of love!

[neroli]

Hello @bubble

 

Thank you. for visiting.  I have been thinking of you and wondering how you are doing - with the fatigue and the pregnancy which must be quite a way along now.

 

I do, of course, hope that this type of injury is reversible but I also have to work out a way that life can have some meaning and ways to cope with it while it is all going on - there are days where I get big waves of anxiety and hopelessness and I can only endure or try to ride them.  Looking into the future at how long this may take is too daunting.

 

My legs have got far worse - I want to reduce off the drugs to see if this helps (I'm not sure whether it will, the weak legs started when I was drug-free just before the breakdown). Enduring the WD effects is frightening to me, I live on my own and I am fearful that I will lose what physical mobility I have and need home care and also whether I have the emotional strength to deal with anxiety bouts that last for hours.   But that is being negative about the future, I know.

 

You are right that it is so good to have this forum for support - I cannot find any other support like this in my area.

 

Thank you for your affirmation of better times coming.

 

I hope you are doing well

 

much love

 

Neroli 💜

[neroli]

Carmie is running away with a marathon of gratitudes, so I feel it is incumbent on me to put some down as I haven't done any for a while:

 

Cup of tea rations

 

Having a calm day (like today, which makes writing gratitudes MUCH easier)

 

Still being able to walk some

 

Getting my dinner ready

 

Finding absorption in colouring

 

Friends - here on SA and in real life

 

Generosity from friends and neighbours - gee people can be really kind

 

Bed

 

Clean sheets

 

Being warm inside on a cold and rainy day

 

Love and best wishes to all, we just keep on keeping on

 

Neroli 💜

[neroli]

I'm copying this onto my thread because I NEED it as a reminder and comforter:

 

On 6/1/2019 at 12:52 PM,  ChessieCat said: 

It's also important to learn not to panic when you get some discomfort.  Whenever I feel discomfort I observe but try not to get involved with it (just thinking ah, that might be a WD symptom) because that adds stress and then the possible WD symptom/s can get mixed up with stress symptoms.  And another thing is to learn to just get through a bad day the best you can.

 

(I added the bold italics to make it stand out)

[wantrelief]

Hello Neroli,

 

I know your quoting CC was for your use but it has been a helpful reminder for me as well.

 

You are doing the part you bolded in getting through the bad days as best you can.  In fact, you inspire me in how you cope through the waves.

 

Thinking about you and hoping for a non-wavey day for you. ❤️WR

 

[Rabe]

Just thinking about you Neroli and hoping you have had some relief form your symptoms...especially the legs.  💜

[neroli]

13 minutes ago, Rabe said:

especially the legs

 

Hello dear Rabe

 

Thank you for thinking of me.

 

I have just noted in my symptom diary that my legs, right up to my glutei, are at 10+.  They have been very heavy and stiff and achy today. And I've had increased anxiety, fatigue and a couple of meltdowns (sobbing).  What I am considering this could be spiked by is having the heat pump on all day yesterday - I have since read that they are very dehydrating and given we are probably quite dehydrated from tapering and from the drugs (I know they dry me out, my skin flakes and I've got dry fingertip ends and dry mouth), it could be an additional burden to the body.  So I have to pile on extra clothes and socks in these winter months and avoid the heat pump.  I'm getting chilblains on my toes and fingers (bloody drugs, I never got this before).  Someone got me an electric throw blanket which I was going to use to wrap round me - but I also read that these are dehydrating too.

 

I've managed to do some work, though, and am now in bed resting up the legs and hoping tomorrow is a better day.

 

I hope you're doing ok and thank you for your lovely, kind wishes.

 

lots of love to you

 

Neroli 💜

[Rabe]

Oh Neroli...Im sorry about your legs!!!  Ugh!!  Yes...the drugs and heat and all are not our friend with the electrolytes.  They can cause all you describe when off.  Take care my dear PF!!!  Much love and many hugs!!💜

[Carmie]

Hi Neroli, 

 

I’m glad to see that you made another gratitude list.👍

 

You said you might be dehydrated, I learnt something really interesting about water this week. We are told to drink lots and lots of water, but even when people do this they can become highly dehydrated. I’ve found that myself. Dr Berg gives a great explanation on YouTube. If you drink too much tap, distilled or even filtered water you get rid of the electrolytes and you end up even more dehydrated. We need to drink spring water when we can and not overdo the tap water. The eight to ten glasses of water a day is a myth. We should drink when we are thirsty. 

 

This makes so much sense. Whenever I’ve decided in the past that I should drink so and so many litres of water a day, I actually was thirstier than ever. The more I drank the thirstier I became. My body was dehydrated because I was flushing out the electrolytes.

 

I just read what you said about your legs. Did you have the leg problems before you were meds? 

 

Take care, sending hugs🤗

 

[neroli]

Hello @Carmie

 

That's interesting information about dehydration, thank you so much.

 

No, I didn't have the "legs" before drugs, they came with the breakdown I had early 2017 after being drug-free for a few years (with a short attempt at re-instatement in 2016).

 

I don't think the drugs I'm on now are helping but who can tell?

 

Glad to see you are managing through your waves and keeping up the distractions and some activity.

 

Neroli 💜

[neroli]

Today I read through the thread on stabilising between, or before, tapering (in Symptoms and Self-care).  I have been experiencing more fatigue, hopelessness, anxiety and stiffer, heavier legs in the past couple of months and it doesn't seem to be letting up.

 

I wanted to try to find out if I should hold a little longer since my last Nortriptyline change one month ago, to try to even out the bouts of anxiety, hopelesness, apathy and big tears, the utter fatigue at times (which is when I get incredibly desperate as I know if I take a doze when I am that fatigued I will wake up with awful thoughts and terrible lethargy which takes a couple of hours to settle down). I certainly don't want to ramp up these symptoms.

 

Or whether I should cut some more of the Nortriptyline to see if that helps with the stiff muscles and walking issues (potential serotonin overload?).

 

It did seem that the general gist was to hold until there were almost no WD symptoms - but then there were discussions about everyone being different and maybe sometimes the drugs make things worse etc. and I came out, yet again, with the "I don't know" feeling.  There just isn't a clear case with these drugs and the damage already done.

 

And then I thought of the people whose experiences I read in this website and I realise many of you are dealing with horrible symptoms whether holding or tapering - so that blows the "feeling normal" WD stability out of the water.

 

Not easy to decide which way to swing.

 

 

 

 

 

[DMV64]

On 6/28/2019 at 3:43 AM, neroli said:

There just isn't a clear case with these drugs and the damage already done.

Oh my gosh I feel exactly like this! I just don't know which way to go sometimes. I try to do all the right things but I feel like I am unsure. I identify.

XO

DMV