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neroli: is this benzo withdrawal, or other drugs interacting

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neroli

Thank you for responding DMV,

 

7 hours ago, DMV64 said:

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.

 

I'm sure we're not the only ones but it means a lot that you understand - thank you for that.

 

Hope you're doing ok at the moment - despite infection.

 

Neroli 💜

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Rabe

Hi Neroli...I am so sorry you continue to deal with these symptoms.  I think we talked about electrolytes before as if they are off weakness, really profound weakness and fatigue, and urinary frequency among others.  Just lots and these drugs can contribute to the electrolyte imbalances...I was just reading a study on tricyclic AD and how they among others can affect electrolytes.  I often add water to milk and heat it up or I add coconut water to water....Carmie is right...never just the water alone unless little sips here and there that will be absorbed.  Otherwise the water should have other things in it...even some lime or lemon.   

I have thought often about your electrolytes with the fatigue and weeing...those are standard when mine are off and the thing is then the more you wee the worse things get.  

It is a hard decision to make as etc holding or not.  I think it might be good to hold and see how you feel...rest, take care, and see how you feel.  If things dont seem to improve or seem to worsen then perhaps not hold...but listening to your body is so much of this and it sounds like you are saying yours is pretty overwhelmed right now if I am hearing you right?  Perhaps give the drop time to take hold and see where you are and go from there?  Im sure the mods will be along...but that is what i have done and it has gotten a bit better finally...but took some time to get through all the changes....and then this hot weather.

Perhaps read back on some of your posts prior to dropping and see how you were then?  Would that help as a comparison?  I know that you will make the right decision .... you have time to do so.  In mean time take good care of you!  Love and hugs to you, Neroli my dear PF!💜

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neroli

Thank you, dear @Rabe

 

I read up a bit on natural electrolytes and saw that lemon was one of them, fortunately I have a lemon tree which is producing ripe fruit at the moment, so I have been sipping lemon water (with a little salt in it) and have also changed to rooibos tea as it is not a diuretic like ordinary tea.  It doesn't seem to have made much of a difference to the weeing, still going a lot.  Here's a list of some natural electrolytes I googled - I'm consuming all but 2 & 3:

 

Here are 5 natural electrolyte boosters:
  1. Sea salt. Sodium is one of the electrolytes that we're quickest to lose through sweat. ... 
  2. Coconut water. Packed with nutrients and low in sugar, coconut water is a great way to rehydrate and replenish electrolytes, especially potassium. ... 
  3. Natural Calm. ... (this is a commercial product, some kind of electrolyte powder)
  4. Lemons. ... 
  5. Green vegetables.

 

1 hour ago, Rabe said:

.but that is what i have done and it has gotten a bit better finally

 

Oh that's good to hear that you have held and are getting some relief from your symptoms.  That must be much appreciated after the roller coaster you've been on.  I will listen to my body, the thing that bothers me is that my legs are getting worse - I'm now down to half an hour of slow walking and even that caused me 10++ in the muscle stiffness and aches, so that's why I'm tossing up whether it's best to hold or to take a drop.

 

Thank you for coming by, my PF, I'm really pleased to hear you are getting a bit of relief 

 

much love

 

Neroli 💜

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Rabe

Oh Neroli...Im so sorry your legs continue to be not good!  That must be both a physical and mental challenge to deal with and I so wish they could improve some soon!  

Have you thought at all about breaking up your walks Neroli?  To 2 15 minute or 3 10 minute?  Sometimes that makes a difference for me.  Idont know if it would for you but a half hour is a lot in WD I think.  

Thinking about you so much my dear PF and sending lots of love and many hugs!                                           

Thank you SO much for stopping by my thread...means os very much!!💜

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Rosetta

I used Natural Calm.  It can be a bit strong if you are sensitive.  The Mods recommend that you mix up a glass and sip it throughout the day.  I don't care for the taste.  So, I took it all at once.  It was too much for me, but as often took it right before bed.  Better to take it during the day, I think.  Of course, you can adjust the dose easily as it is a powder.  I may have taken too much even though I was taking 1/2 the dose recommended on the bottle, then 1/4 when that was too much.  I have thought of going back to it.  Sometimes, I have strong cramps in my legs -- a sign of potassium deficiency.  You will know if you take too much as it causes diarrhea.  Overall, I think it is fine in small doses.

 

I do hope you feel stronger and better soon.  -Rosetta

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neroli

Hello @Rosetta

 

Thank you for telling me about Natural Calm and potassium deficiency.

 

Are your leg cramps related to your WD, or did you have them before anyway?

 

All best wishes to you and hope you are ok after the quake.

 

Neroli 💜

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neroli

Reduced Nortriptyline by 2.5mg (3%) a week ago.

 

Legs have got more stiff and achy - up to level 10++ on a few days

Walking, could only manage to the corner of my street and back (30-ish yards) on Tuesday and that took me 10 minutes

Did manage to walk around the supermarket today.

Fatigue, anxiety flare ups.

Chilbains on fingers and toes worsening.

Hungers and wees.

Friday - extraordinary - no anxiety, no fatigue, no hungers and wees, legs still stiff but manageable.

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bubble

That's an unusual pattern indeed. After a cut I monitor myself very closely to see how WD symptoms play out. Since you were quite symptomatic before the cut it's hard to say what is the usual symptom pattern and what is WD.

 

I hope you can ride it out this time!

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Rabe
8 hours ago, neroli said:

Friday - extraordinary - no anxiety, no fatigue, no hungers and wees, legs still stiff but manageab

 

I am SO happy to read this Neroli!!! YAY!!!!!

 

😃💥🎉🎁💜 

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neroli
10 hours ago, bubble said:

I hope you can ride it out this time!

 

Thank you, Bubble.

 

I hope so too.  It seems clear to me that reducing is not helping with my legs and may be making it worse (possibly WD from the current drugs on top of the protracted WD from the period when I was drug-free).  Just no way to know.  Except try a hold for a while and see if things improve a bit.

 

Hoping you are ok and nearing your extended leave.

 

much love

 

Neroli 💜

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neroli
4 hours ago, Rabe said:

I am SO happy to read this Neroli!!! YAY!!!!!

 

Thank you, dear Rabe.  It was very nice to have such a calm and clear day.  Back in the waves again now, practising treading water!

 

much love

 

Neroli 💜

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Rosetta

I'm happy to see you had a break on Friday.  I guess that was my Thursday, sort of.  You are an incredible person, Neroli.  Thanks for being here. -Rosetta

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Rabe

 Im still so happy that you had any break though I know how hard it is to get one and have it taken away so soon!  Hoping more will be coming soon Neroli.  God knows you so deserve them!!💜

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neroli

Oh, Rosetta, thank you, you have touched me with your comment:

 

7 hours ago, Rosetta said:

You are an incredible person, Neroli.  Thanks for being here

 

As you probably understand, we don't feel too incredible as we go through this process, but we all are so incredible for keeping on towards better health, despite that ups and downs.

 

I thank you for being here, too Rosetta, you welcomed me into the group when I joined last year and that meant a lot to me.  I appreciate being able to read your updates and am especially pleased when I see you have had some relief and improvement.

 

much love

 

Neroli 💜

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neroli

Hello dear Rabe

 

Thank you for your lovely message.

 

2 hours ago, Rabe said:

Hoping more will be coming soon Neroli.  God knows you so deserve them!!

 

And so do you, Rabe.  You have consistently dealt with your situation with strength and resiliency. (I know it doesn't feel like it but you are still here with us, thank goodness, we need you).  Wish we all didn't need to be here, though.

 

much love

 

Neroli 💜

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Rosetta

You are welcome.  It's true.  ((Neroli)). Hang in there!!

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neroli

Hello  @Altostrata

 

I am getting more and more concerned and  wondered if you might have any insight into what could be happening.

 

I made a cut in Diazepam 0f 0.25 mg Diazepam on 12 January 2019, after holding since June 2018.  I made 2.5 mg cuts to the Nortriptyline in October and December 2018 and May and June 2019.

 

Since March my legs have got much more stiff and achy, with some days barely able to walk and I'm feeling more inner trembliness/anxiety and fatigue.

 

I know you have suggested serotonin toxicity could be at play but I'm rather baffled that despite cutting the Nortriptyline, my legs are getting worse.

 

I know I am probably asking/trying to work out the impossible as to what is contributing to this but I don't know whether I am experiencing an extended WD from the Diazepam taper and holding might improve this, or that the potential serotonin toxicity is increasing over time and reducing the serotonergic drugs further may help despite this worsening of leg condition and other symptoms. 

 

At the end of the day, I know it is my responsibility to make any decisions - I'm just asking in case you have knowledge of this sort of occurrence.  I have searched the Muscle pain and muscle weakness topics fora but could not find anything relevant to what is happening to me.

 

Thank you for your consideration.

 

Neroli 

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Altostrata

You're still taking 80mg nortriptyline with 10mg escilatopram? Those are still substantial doses of both drugs.

 

On 5/11/2019 at 2:13 PM, Altostrata said:

neroli, how much of each drug are you taking now, at what times of day?

 

Here is your drug interactions report

 

Do you see where it says escilatopram and nortriptyline can cause "muscle spasm or stiffness, tremor, incoordination"? Does that sound like your symptoms?

 

 

Have you discussed your potential MAJOR drug-drug reaction with doctors?

 

Not sure what I can tell you but to point out that you may be having an adverse reaction to this combination. Increasing any of the drugs doesn't seem like a good idea and I don't know of any drug you can add that will make your cocktail more comfortable for you.

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neroli

Thank you @Altostrata

 

I have mentioned serotonin toxicity slightly to my Dr. (I think she may have referred to it in passing as well) - but no in depth discussion.  She said to keep on with the Nortriptyline reduction as I had mentioned that reducing the Escitalopram had seemed to have a major WD effect.

 

No, I don't want to increase any of the drugs or add anything.

 

33 minutes ago, Altostrata said:

Not sure what I can tell you but to point out that you may be having an adverse reaction to this combination

 

Thank you for your response - I did think it was something that could be unfathomable.  I appreciate you coming back to me, just that I wanted to check as it is, of course, a concern that I appear to be losing my leg capability.

 

Neroli 

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Altostrata

I'm sorry, it appears your drug combination is still a major problem for you.

 

Diazepam may also cause muscle weakness, see https://www.drugs.com/sfx/valium-side-effects.html

 

Quote

 

Check with your doctor immediately if any of the following side effects occur while taking diazepam:

More Common

  • Shakiness and unsteady walk
  • unsteadiness, trembling, or other problems with muscle control or coordination

 

Maybe you want to take up tapering diazepam again.

 

I am appalled that your doctor has not addressed your adverse drug effects.

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neroli

Thank you Altostrata

 

To be honest I find deciding what to reduce a bit of a conundrum but I thank you for your input.  I know I'd like to decrease the Escitalopram but have experienced seemingly huge fatigue and depression from a 1% reduction in the past - but I may try a smaller cut.  I'd thought If I could get that underway fairly successfully, I would alternate then between Esci. and Diazepam.

 

1 hour ago, Altostrata said:

I am appalled that your doctor has not addressed your adverse drug effects.

 

I am appalled that the psychiatrist who put me on these drugs (well, in reality he virtually left the choice to me re. the ADs and after having PRNd lorazepam for a quite while and getting inter-dose WD and rebound anxiety, I asked to be tapered across to diazepam regular dosing) didn't address the AD adverse effects and when I booked to talk to him about specific drug questions and interactions he told me he didn't want to discuss my drugs and that as far as he was concerned he had advised "steady as she goes" ie. not making any changes. I don't go to see him anymore - better off without him as he dismissed my clearly documented account of damage from previous druggings when I first had the physical breakdown and 24/7 "chemical" anxiety and entered the mental "health" system.

 

The Dr. is the one who has got the closest to addressing any adverse combinations of ADs.  I have to say, though, that I approach her with cautious candour, I've always got on well with her but it's taken some fairly strong words to get her close to admitting drug damage and now I need to protect my relationship with her so that I am not ripped off the Benzos (this is just a concern in case she gets wobbly about prescribing Benzos, as some Drs. are edgy about this and a potential Benzo audit - not sure of the probability of an audit).

 

I am trying to hang on to the job I've got and they've been ok about me working from home, part-time, so far (which is great) but I'm taking more sick days of late, just not able to cope with it, so somewhat desperately trying to work out which drug reduction will make things quickly better for me (!!!!! I know, that's not the nature of this beast).

 

Many thanks for your responses.

 

Neroli

 

 

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Altostrata

It is a conundrum and I'm sorry, I cannot solve it, either. You can stay on your current dosages of drugs, you can increase the dosages, or you can decrease them. No other options if you rule out cold turkey.

 

You can rotate your taper among your drugs, tapering one at a time is safest.

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neroli
1 hour ago, Altostrata said:

t is a conundrum and I'm sorry, I cannot solve it, either. You can stay on your current dosages of drugs, you can increase the dosages, or you can decrease them. No other options if you rule out cold turkey.

 

You can rotate your taper among your drugs, tapering one at a time is safest.

 

Thank you, Altostrata.

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Rosetta

Thanks for writing on my thread.  It's so kind of you to be there for me considering all you are going through.  Just reading my thread must be difficult.  I really appreciate your kind words.  I'm not doing well this week at all.  Back to the bottom.  I can't believe it.  Your sweet note helped a little bit.  Thank you, Neroli.

 

I'm sorry you are struggling with your legs.  I still have a lack of coordination, stiffness and joint aches.  It's a surprise when stairs are not a problem for me.  It comes and goes and yours seems to be more constant.  I wish there were an easy way off these drugs.  That there is not is good reason for them to be banned.  Fat chance of that happening.

 

We must soldier on.  There must be an end to this at some point, but it's hard to imagine.  I know you'll get there.  You can't see it right now, but you will.

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Rabe

Neroli I am sorry you continue to struggle with your legs and how and what to taper.

I read here once of someone who tapered both meds at once...or alternated?  Im trying to remember.

I sound really dumb even mentioning it...just so wishing there was some way to make this better for you Neroli.

Thinking of you always my dear PF! 💜

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Carmie

Hi Neroli, 

 

How are you coping? I’m sorry you’re in such a predicament with so many options, and not knowing which one to take. As Alto said you’re the only one who can decide as we don’t know what affect any of the decisions will have. 

 

These drugs have us in a kind of prison, the pharmaceutical companies and the doctors certainly have us as prisoners. If only we knew beforehand what we were getting ourselves into. Can’t wait until we all are out of our captivity, I really want to break open the bars.

 

Hope you manage to cope with the day okay. 

 

Sending you hugs🤗

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neroli

Hello @Carmie

 

Thank you for dropping in - I really appreciate it as I know you have been taking time out for your self-care.

 

Today is a bit of a struggle - fatigue and heavier legs, with anxiety humming around.

 

I took a 5mg cut in Nortriptyline on Sunday, so am waiting to see what, if any, effects it has.  So far, I don't think I've discerned anything out of the usual symptoms I've been having in the past months.  These darn legs don't seem to get any better with any reductions I make.

 

I'm on leave from work for a week, so am able to rest but it's not a comfortable rest- some days I feel like I am just hanging on waiting to go back to bed again at night.  Those are the tough ones.

 

Yesterday was much better and I was even able to get out in the car and take a drive round - felt almost normal.

 

I'm still trying to make as informed a decision as I can on which drug to taper but I've given up the search for the scientific/specific information to help with that decision.  It is a puzzle.

 

Am hoping you are doing better.  I think I saw you had come round from the last drop and had made a further reduction, so all the best with that.

 

I'm grateful for your company and good wishes

 

Neroli 💜

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neroli

And yes, it feels like a prison.

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bubble
8 hours ago, neroli said:

 So far, I don't think I've discerned anything out of the usual symptoms I've been having in the past months.  These darn legs don't seem to get any better with any reductions I make.

 

The first part actually is good news. Your previous reductions resulted in WD symptoms you couldn't tolerate so this is definitely an improvement. You are finally moving and I hope this lessens the battle fatigue. 

 

I think it might be too early for reductions to reflect on the legs situation so  it doesn't mean that it won't. It all takes time. So God give us patience (but do it quickly :)

 

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Carmie

Hi again Neroli, 

 

We dropped on the same day. I jumped from 6.75mg to 6.50mg.  I tapered on day forty after my last drop. I was in a window for a week or so before the drop Sunday. Let’s see how we both go with this drop. 

 

I’m sorry you feel like you’re just hanging on waiting to go to bed. I spent most of the last few days in bed, but the other week I had lots of fun adventures out and about inbetween spending time in bed. I nearly collapsed a few times though as I don’t have much strength and I did quite a bit of walking at the Zoo🐯🦘and also from the bus stop 🚍to one of my friend’s places. Had to sit down a lot. I’m used to it, it’s been part of my life for 25 years. I don’t know any different now, I just take each day as it comes. 

 

So glad you got to go for a little drive.🚗 It’s so nice to get out and about when you’ve been stuck at home a lot. Hope you manage to have a little fun on your week off work. I’ve got  lots of happy memories of animals, mountains, gardens, friends etc etc from last week, and off course, a million photos📸🤓

 

Wishing you all the best with this latest drop.💚

 

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neroli
9 hours ago, Carmie said:

Had to sit down a lot. I’m used to it, it’s been part of my life for 25 years.

 

I'm sorry this is how it's been for you for so long - whilst you say you have got used to it now, I guess it has taken quite a bit of  "acceptance" to be able to take it as it is.

 

It is relatively new for me (2 and half years) and while I have got used to it in some ways, it still unnerves me if the condition gets worse.  I have no in-house support, so there's only me to rely on for feeding and taking care of myself.

 

Yes, let's see how we both go on this drop.  I'm glad you have some good times and memories to savour.

 

Neroli 💜

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neroli
11 hours ago, bubble said:

I think it might be too early for reductions to reflect on the legs situation so  it doesn't mean that it won't.

Hi Bubble

 

It seems that the reduction makes my legs worse - they have been even heavier over the past couple of days.  The legs started when I had a physical breakdown in early 2017 - and then, because I couldn't take the 24/7 anxiety over many weeks, I ended up on three new drugs.  I'm wondering if the legs were a crescendo in protracted WD/damage and that now I am having WD leg symptoms on top of the initial drug damage collapse.  Just a thought.

 

Thank you for popping in - and all the best for the coming weeks for you.

 

Neroli 💜

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neroli

While I'm feeling somewhat reasonable, I'll do a list of gratitudes:

 

  • Support from people in this group and from others
  • A calm afternoon, able to enjoy colouring and knitting
  • A lovely cup of tea this afternoon
  • Catching sight of the blue sky and being able to feel a fleeting appreciation of it
  • Neighbours and friends who are so very kind
  • Slight easing off of my legs this afternoon
  • Baylissa Frederick, a wonderful tonic
  • Having time off from work
  • Cinerarias coming in to bud (I'm sure they're too early)
  • Half a dozen lemons harvested off my tree  - using them squeezed onto my dinner and in hot water with salt (supposedly a natural electrolyte). It's great that I love lemon.
  • People who are campaigning for recognition/change with regard to AD/Benzo withdrawal and its difficulties
  • Hungers and wees have lessened

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Rabe
On 7/15/2019 at 8:03 PM, neroli said:

some days I feel like I am just hanging on waiting to go back to bed again at night.  Those are the tough ones.

I understand this Neroli...always so grateful to get to end of a day.  Im sorry this is how it has been for you.

 

On 7/15/2019 at 8:03 PM, neroli said:

esterday was much better and I was even able to get out in the car and take a drive round - felt almost normal.

But was so happy to then read this!

Hoping you are still feeling ok today Neroli!  Love and hugs my PF! 💜

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Rabe

How are you doing Neroli?  You haven't been here for a while and Im hoping that means you are feeling better? In an case I just wanted you to know that you remain in my heart and prayers and thoughts always my dear PF!💜

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neroli

Hello dear @Rabe

 

Thank you for dropping in and your lovely wishes of support.  I haven't been around much in the forum as I've had some difficult days and Im just too exhausted at night, which is when I do my catching up with messages, or posting.  I'm also in a "I'm so fed up with all this" mode, as the legs have got worse and fatigue and anxiety have been having more of a presence.

 

I do try to get round to other people's threads during the week to see how they are doing.

 

I hope you are coping with your food/med reactions reasonable ok - so difficult for you, you are a super-trooper (no reference to Abba :) )

 

You are in my thoughts and wishes, dear PF, we are in this together.

 

love to you

 

Neroli 💜

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