neroli: is this benzo withdrawal, or other drugs interacting

[Carmie]

Hi Neroli, 

 

Glad to see that you’re still writing down what you’re grateful for. 

 

Sending hugs🤗

[neroli]

Such a tough day.  Fatigue, legs, anxiety up at max.  Just hanging out waiting for the day to end and hope that tomorrow is a bit better.

 

Grateful that I have people I can talk to about this.

 

If this goes on for a few more days, I'll re-instate the Nortriptyline I dropped last Monday.

 

Just feeling like I'll never get off these drugs or get my legs back.  Maybe reduce a little but not a snowball's chance in hell of getting off them totally.

[bubble]

Sorry to hear that! I was just thinking how you felt better the other day despite the cut.

 

Do you think that this wave is worse from the waves you had before the cut? Somehow I didn't go back in dose if I was a week after a cut thinking my brain has already made some adjustments and looking at symptoms as signs of healing. Give it a few days and see how it goes. If you decide to updose try not to go to the previous dose but somewhere half way.

 

It gets better! Xxxx

[neroli]

Hello Bubble

 

Thank you for your kind response.

 

9 hours ago, bubble said:

Do you think that this wave is worse from the waves you had before the cut?

 

Oh, yes, most definitely, it was mega.  Just about made it through the day and had to get lots of support from people to just hold me together.  I'm still super-fatigued, I've re-instated back to where I was before this - I was on the edge.  I'm going to have to make a water suspension to cut by lower doses than 2.5mg.  Need to recuperate now and then work out where to next.

 

Hope you  are doing ok

 

Thank you for your support

 

Neroli 💜

[bubble]

Now at least we know where we stand... Hope you return to your WD normal soon.

 

I'm doing pretty well! Thanks for asking xXxX will update soon. Great that you have people who can support you and are making the right decisions to take care of yourself. Better days are coming. As hard as it is, we could be in the world of most people who are not aware of the nature of these drugs and continue to be harmed by their clueless doctors. We know what's going on and are in charge of the process...another thing to be grateful for.

[Rosetta]

(((Neroli))). This is really amazingly difficult isn't it?  I continue to be appalled.  I know you will even out.  It's just so hard to live through.

All my love, Rosetta

[neroli]

Hello Bubble

 

24 minutes ago, bubble said:

As hard as it is, we could be in the world of most people who are not aware of the nature of these drugs and continue to be harmed by their clueless doctors.

 

Yes!  It is scary to think about.  And the fact that this forum exists and the support from people like you is a big thing to be grateful for.

 

Many thanks - glad you are doing well.

 

Neroli 💜

[neroli]

Hello Rosetta

 

Thank you for popping in.  It is truly difficult  - it's like being a yo-yo thrown down and up.  I still can't wrap my head around the denial in the "medical" community about what happens - even though I know there are big commercial/political forces at play as well - iit just doesn't seem to add up to the Hippocratic oath for me.

 

I know you have had some difficult moments recently, so I know you understand:

 

18 minutes ago, Rosetta said:

It's just so hard to live through.

 

much love

 

Neroli 💜

 

[Rabe]

On 5/25/2019 at 11:59 PM, neroli said:

Just feeling like I'll never get off these drugs or get my legs back.  Maybe reduce a little but not a snowball's chance in hell of getting off them totally.

 

Oh Neroli...I am so sorry you are still being hit by this wave!  They are so so disabling!  My heart is so with you!!!  Are you sleeping at least?  I hope so!

7 hours ago, neroli said:

support from people like you is a big thing to be grateful for.

I wanted to tell you I have been and continue to be SO grateful for my friend across the pond.  I wish I could be there to give you a hug, Neroli!  I hope tomorrow is better for you!  Take care my dear friend!  Im sorry I have been absent and thank you for stopping by....I just have been so upended reacting to so much I dont want to take meds or food.

Im glad you are feeling a bit better with the update and will now take things slower.  Love and hugs!!💜 

[neroli]

Notes;

 

Heavy fatigue and legs at the start of the day, which lifted somewhat as the day went on.  Took a day off sick to rest and was ok just doing knitting and colouring.   Quite calm.  Such a huge difference from yesterday.

 

I'm wondering if the work on the treadmill threw me for a loop and yesterday was the climax of it.  I won't be doing that much exercise and pushing myself like that again in a hurry - the fallout (if that's what caused it) is too much to bear.

 

Grateful to have had a calm day.

[bubble]

2 hours ago, neroli said:

I'm wondering if the work on the treadmill threw me for a loop and yesterday was the climax of it.  

this is something to bear in mind for the future: maybe the worsening of symptoms wasn't due to the cut but when we are hit by symptoms our knee jerk reaction is always to adjust the meds.

In any case, very happy to hear you are feeling better  Hard to tell if the updose would have such a quick effect although I can sometimes feel it almost instantly...

[JackieDecides]

5 hours ago, neroli said:

Took a day off sick to rest and was ok just doing knitting and colouring.   Quite calm.  Such a huge difference from yesterday.

 

I'm so glad you were able to take a sick day and it sounds like it helped. 😍

[neroli]

Oh, I'm having an anxiety attack - like I did when I had the crash in early 2017.  It hasn't been like this since I've been re-drugged - there have been small spikes but not an all-day level 6-7-8 attack.

 

I hope this wears off and it's just a wave from the gym/downdosing and re-updosing of the Nortriptyline.

 

 

[Kristine]

Hi @neroli I’m so sorry you are experiencing anxiety and panic. It is truly a terrifying experience, but it will pass. What helps me is lying down in bed with all the blinds drawn, eye mask on, put some peppermint or rosemary oil in my diffuser, start deep breathing and focus on the sensation of cool air going in and warm air going out in my nose and listen to some soothing music..I find the following very calming ....

 

 

[neroli]

Thank you @Kristine for dropping in and offering support.  So very much appreciated.

 

 

[Rabe]

2 hours ago, neroli said:

Oh, I'm having an anxiety attack - like I did when I had the crash in early 2017.  It hasn't been like this since I've been re-drugged - there have been small spikes but not an all-day level 6-7-8 attack.

 

I hope this wears off and it's just a wave from the gym/downdosing and re-updosing of the Nortriptyline.

 

Oh Neroli I am so sorry you are having them again....they are so hard to deal with.  Mine have returned as well after 30 years not.  My heart is with you!

 

I can say that I gave up on doing the 'y' and weights and treadmill.  I was going that and did notice that eventually it would catch up to me and I would be worse.  And the time span got shorter.  Took longer, then shorter and shorted to feel bad. So I just try my meditation ini the morning if am able to get beyond the agitation, and then just some yoga and maybe light weights that I have.  The other is too much which is hard cause I used to work out everyday and walk miles as well.  

 

I have had a long panicky, high anxiety day today...please know that I am thinking about you Neroli.  I so hope your system settles soon !  Love and hugs to you!💜

[neroli]

Hello dear Rabe 

 

Thank you for dropping in - I really appreciate your support.

 

I had looked at your symptoms list while I was in the anxiety attack and could see that you have sessions of panic and anxiety every day to cope with - so I knew that there was someone else out there who was doing their very best in the face of it all.  I don't like it that you are having this but I have to admire that you are keeping going.

 

I only did two x two minute sessions on the treadmill for the phsyio but I don't think I'll do it again.  If that has caused this, the fatigue and the legs feeling worse (and of course it was at a time when I'd taken a cut in Nortriptyline, so I can't be sure how much that played into it) I am not going there again.  I feel so despairing.

 

55 minutes ago, Rabe said:

I have had a long panicky, high anxiety day today

 

I am so sorry to hear this - it does make for a long day.  I am watching the clock til dinner and then I can go to bed, hopefully sleep better and have a calmer day tomorrow.  

 

I have a new person coming to take me grocery shopping tomorrow - I am paying for her to take me (I don't know her, she's a friend of a friend and she said she would do it for free but I want to pay something so that I don't feel like I'm putting upon anyone).  I'm upset that I haven't been able to do my shopping solo for a month or so - it seems like a deterioration to me.

 

We just have to hang on.

 

love to you, PF, I wish you some calm times

 

Neroli 💜

 

[Rabe]

Oh Neroli....it is so hard to feel the set backs!!  And wonder if they will reset isn't it?  I am so with you in my heart and so sorry you are having to deal with all that you are.  I am grateful you have someone to help you with the shopping and all for now.  I have to get to the store tomorrow too...am hoping to be able to!  IDK.  Today was truly something.

I hope tomorrow is kinder to you Neroli...that there is an ounce of relief with some hope to counter the despair.  I feel too old to be doing this...or wanting to do this/live like this...but on better days that feels some different.  Day at time!  Thank you for sharing and know I am here thinking about you!💜 

[neroli]

1 hour ago, Rabe said:

I feel too old to be doing this...or wanting to do this/live like this...but on better days that feels some different.  Day at time!  Thank you for sharing and know I am here thinking about you!💜 

 

I'm with you on all of this, dear Rabe.

 

Thinking of you, too and hoping tomorrow will be one of those better days.

 

Neroli 💜

[neroli]

That's soothing music @Kristine.  I use similar ones in the morning when I wake up very early and can't go back to sleep - I can sometimes doze a bit to them.

 

Please will you bottle some of your tenacity and courage and send it over the Tasman to me?  I've just about had it with all this sh*tty nonsense - you seem to deal with it better.

 

Neroli 💜

[neroli]

Barely able to walk again today.  Legs stiff and aching. Anxiety attack in the afternoon.  Super-fatigue (but not one that I can doze away).  Just hanging in.

 

Grateful?:

 

People who say we can get through this.

Support from friends and companions on this site.

[neroli]

Grateful list:

 

Calmer day - no heavy anxiety

Friend took me grocery shopping

Managed to pass the day knitting and colouring without too much loneliness

Fed myself well

Can still shower myself

Had an après-lunch doze and didn't feel like a bulldozer had hit me when I woke

I'm warm and dry in bed, while a heavy storm carries on outside

[Carmie]

Hi Neroli, 

 

I’m sorry you’ve been struggling so much, but I’m happy to hear you had a calmer day. Glad to hear too that you’ve still got your distractions in place. I used to do heaps of colouring in until I got into diamond paintings. I’ve still got a couple of colouring books a friend gave. Distractions! Distractions! Distractions!😁

 

Keep up your gratitude list. You’ve inspired me to write one every time I interact on my thread. 

 

Take care💚

[JackieDecides]

24 minutes ago, Carmie said:

Keep up your gratitude list. You’ve inspired me to write one every time I interact on my thread. 

 

 

me, too, Neroli sets such a great example ❤️

[neroli]

Awww, thanks @Carmie and @JackieDecides I'm glad you are finding the gratitude lists useful.  For me, it's a way of looking at the things that are still ok in my life, rather than focusing on the losses.  It helps me a wee bit.   "You don't know what you've got til it's gone" - so this is one way I can be aware of what I have got.

 

I hope you are both doing ok - both of you are dealing with extra stressors aside from WD - you are so strong to cope with it all.

 

Neroli 💜

 

 

[neroli]

Notes:

 

Had a better day today - calm and not so fatigued.  There really does seem to be a bad day/good day pattern happening.  On the bad days I feel pretty desperate, so am learning how to cope with those.  

 

On the Acceptance front, I realise that I've been trying to sew "Acceptance" up into a nice tiny little bundle, have got it licked and be able to ride all the storms with a smile of acceptance on my face.  Over the past couple of days or so I've realised that life is fluid, it changes all the time, in drug damage it changes quite markedly - so at one moment I can have accepted that my legs are stiff and weak-feeling, then the next they feel as though they will buckle, so that is a whole other area of acceptance to practice.  

 

There is no perfect acceptance, it is a moving feast, and it is challenging practice. I don't have to hold myself up to a perfect image of acceptance (and it will probably harm me emotionally if I do).

 

So, while I'm feeling reasonably good (stiff achy legs aside), things to be grateful for:

1) Warm sun coming in and warming the room on a cold day

2) Useful and interesting YouTubes to watch

3) Finding calm in knitting

4) Able to work from home and no anxiety today

5) Posting one of my colouring cards to my neighbour and saying thank you for all the support she gives me.

6) Someone to take me grocery shopping tomorrow

7) Low hungers and wees

8 ) Netflix

[Rosetta]

I'm very happy to hear you have been having an easier time. -R

[Rabe]

Thats one of the things I am grateful for...is when I go to the friends I have here and am able to read that they are having a good day or part of a day.  Im so happy to read you are having a better day, Neroli.  Warms my heart!  

Thank you for stopping and for your thoughts...I am grateful for them and for you!!  Love and hugs my friend!💜

[neroli]

Mods, or anyone whose had a similar experience:

 

My legs just seem to be getting worse (in fact all through 2017/18 I think I felt them getting worse, since they first gave way at the beginning of 2017) - they are more stiff and achy and tire very easily with feelings like they are going to give out at times.  I'm now unable to go to the office, have to have someone take me shopping and I've cut back on my walks to once a week if I go, they are getting shorter and slower (half an hour tops) or I just don't feel as though I can do it.  Even walking round my house is getting more difficult and preparing meals is about all I can do. (Even if I could get to the office, the fatigue I'm experiencing would mean I could only probably manage a couple of hours there as I have an hour and a half commute each way)

 

Serotonin toxicity's been mentioned as a possible contributer to this, if I have read everything correctly on my thread - especially as I get inner shakes/tremors as well.  But it has also been suggested that the three drugs I'm on are causing a "jam" in my liver for enzymes - and that reducing Nortriptyline, which seemed to be taking up the most of the enzymes, would free up some of the log jam.  From this I inferred that it could make the metabolisation of diazepam faster through my system (and from what I'd read on another thread, possibly having the effect of a reduction in Diazepam even while on the same dose).

 

I cut 0.25mg Diazepam in January and my legs started to get worse from then on, with March being the start of not getting into the office. Since May, I've cut 2.5mg Nortriptyline.  

 

I just don't know which way to turn next.  If I cut Nortriptyline, does that mean that I could be experiencing the stiffness and aches from the diazepam being cleared from my system and causing a virtual benzo reduction/WD effect? So should I hold for a while and see if my system settles a bit?  

 

Or should I try a cut in the Escitalopram again?  The last time I did this I tried a 0.1mg cut which I'm sure made me so very fatigued and depressed.  So if I make a cut it would be lower than that - maybe half or smaller, which seems so small as to mean that  it would take a long time to see any potential positive effect (meanwhile remaining on the same doses of Diaz and Nortrip).

 

 Is my logic making sense, or is there really no sense in this tapering process?  

[Kostas]

Hi Neroli, 

I can't advise on te the drug subject, but I have to tell you that I have also faced weakness in my feet and hands, when reducing my seropram and for some time after stopping it. 

 

At the beginning I was terrified that I would not be able to walk a few hundred meters, and hesitate to go for a longer walk. 

 

However in due time, I realized that if I tried, I was able to walk a couple of km, and feeling in the end less weakness! 

 

Gradually my confidence was restored, I started not to worry too much, and  finally 1-2 years after being off the drug, I was able to go for skiing and swimming, without any weakness feeling! 

 

Now still 4 years after I am fine. 

Hope for the best for you as well.

[Rabe]

Hi Neroli.  

When I first started the Viibryd in treatment I could tell it was affecting the CLonazepam and I said something but no ears listening there.  I also had tender breasts and thought that odd.  Researching things since the Premarin is also metabolized by the same enzyme as the other meds so I suspect there was something going on with the Premarin as well when the V was started.

I have found that when I reduce the Viibryd I feel as if I get a double punch...the V reduction and the feeling that the Clonazepam is affected as well.  With the enzyme action I believe that to be true and probably the extent varies.  

I also personally feel that these drugs affect electrolytes a lot as the GABA and other receptors are also the ion channels through which electrolytes pass.  When I am tapering my electrolytes get worse as well causing more weakness etc of all muscles in my body which affects pretty much everything.  So if taper one drug that then affects others I feel it could make the symptoms you are talking about more severe.

But that just has been my experience....and why it would be nice to be only tapering one instead of multiple.  I so empathize and am sending hugs and love your way, wishing they could offer some relief and healing.  It is such a hard place to be!  The only thing can do is go very slowly I guess.  Holding has helped me though things get stirred up with other life events and procedures etc.  💜  

 

[Rabe]

I wanted to say that even now, after I take the Viibryd..bout hour to 2 hours later I dont feel well...more nervous, dizzy, etc.  I do think it continues to throw things off.  

[neroli]

Thank you @Kostas - it is encouraging that you have managed to get your strength back and great for you that you can ski and swim now.  I'm having a different effect, I was walking quite long walks but they have got shorter and I don't have the energy or strength now to make them longer.

 

But it is good to hear that things have improved for you.

 

Thank you for your best wishes.

[neroli]

Thank you @Rabe yes, it is a confounding and difficult process.  Also,  to make things more confusing, I've since checked the FDA labels for all three drugs and they show a different enzyme profile.

 

It's all a bit of a crap shoot.

 

All the best to you, PF

 

Neroli 💜

[Rosetta]

Hi Neroli,

 

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

[Rabe]

Hi Neroli...that's crazy huh?  Not even the FDA knows what metabolizes what.  THATS comforting!  

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.  And caffeine can interact, and other foods etc.  So it all is interesting if your not the one in the midst of the mess!  

I just wanted you to know i was thinking about you my PF and hoping today was better for you!!💜