Mocha: Dealing with cold turkey from Nortriptyline

[Mocha]

I am 73 and had attempted to taper from 150 mg of nortrip which I had been taking for 5 yrs (neuropathic pain).  Over a period of 2 yrs, with rescalation and other problems I was able to reduce to 100 mg/day.  .  5 months ago I quit from 100 mg.  I have more or less survived but am only now realizing what a serious mistake I made.  Currently sx's are totally disruptive.   If I calculate a 10% per month taper it could mean up to another 1.5 yrs, which I would find intolerable.  I was only able to do 5 mg / month when I was doing a slow taper.  I recently attempted to re-start the drug at 10 mg, but in the first week was very symptomatic - all the usual.  

 

Am I correct that the rate of recovery will be just as slow now as it would have been with a slow taper?  In other words, yes indeed, I am looking at about > 1 yr to go.

 

Would it be reasonable to attempt another trial of reinstatement, and hang at it for 2-3 weeks?

 

Gracias

[mammaP]

Hi Mocha, welcome to SA.   

On 7/25/2018 at 9:23 AM, Mocha said:

Am I correct that the rate of recovery will be just as slow now as it would have been with a slow taper?  In other words, yes indeed, I am looking at about > 1 yr to go.

 

Unfortunately we can't say how long it will take, everyone is different, and the drugs are different.  IT is very sad when someone is prescribes a drug for pain then they can't get off it when it is no longer needed!  Can you tell us the symptoms when you reinstated 10mg and how long you took 10mg? 

What are your symptoms now, have they improved at all? 

We often recommend very very small doses for reinstatement,  even as small as 0.5 can sometimes help alleviate the withdrawal symptoms but even that tiny dose has to be slowly tapered to avoid being thrown back into withdrawal. Unbelievable but we see it all the time here. 

 

As you recover you will experience windows and waves, it can be quite scary but when you understand it, it becomes less so and even reassuring because you know it is the brain and nervous system that is healing. 

https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/

 

This has links that explain withdraweal syndrome.

https://www.survivingantidepressants.org/topic/603-what-is-withdrawal-syndrome/

 

About reinstating 

https://www.survivingantidepressants.org/index.php?/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

 

We ask all members to fill in their drug and taper history with all drugs and doses, some drugs can interact with each other and we need to know that to give the best advice. This link takes you to the signature box, fill it in and click save. We don't need symptoms in signature, just the drugs, doses and dates if you can remember.   

 

[Mocha]

Thanks for the response.  I would like to add, a compliment - as you can see in my signature, I am an academic physician still working full time, and have access to a variety of neurologists, psychiatrists, etc.  Sad to say none of them have the slightest idea what the discontinuation syndrome is or what to do.  I am quite impressed on the other hand with the seriousness and quality of the responses provided here by the moderators.  It reflects a high level of knowledge and careful reasoning, all too often missing in the medical profession.

 

That said, in response to your queries:  When I reinstated the 10 mg the main sx was significant pain, as well as headache and brain fog, which were intolerable.  4 days after stopping the 10 mg dose I was back to baseline, daily cramping, headache, despondency, pain (partially reflecting the prior injury to my spinal cord).

 

I may be 10 % better, but I am loath to throw away another 9 mths of my life in this state.  That's a fair chunk of health life remaining . . . 

 

The only way to use a dose less than 10 mg, that I am aware of, is the oral solution, which is not commonly stocked, although I assume I can find it.  I suppose that would be worth a try.  

 

Thanks

[Gridley]

If you can't find the oral solution of nortriptyline, you can make your own liquid as described in this link:

 

Tips for tapering off nortriptyline 

Edited July 26, 2018 by Gridley

[Mocha]

I was out of touch for 4 mths, trying to tough out the sx's, but am now at 8 mths since stopping nortryptiline at a dose of 100 mg/day and have not experienced much improvement.  I realize this is a potentially unanswerable question - is it possible for discontinuance to last that long?  The sx complex is entirely compatible with what is described, although pain and upper airway secretions are quite prominent.  I realize being older, taking a very high dose, and stopping at a high dose complicate matters. Up till now I have found nothing whatsoever that relieves sx's, especially the pain. 

 

thanks.  

[Mocha]

Title added:  Is it possible to start all over again..

 

I have been off nortriptyline for 2 years, and had some decent intervals, but recently feel like I am starting all over again . . .is that possible?

Edited February 18, 2020 by manymoretodays
merged 2nd intro topic with 1st, title added

[manymoretodays]

Hi Mocha, @Mocha

And welcome back.  One introduction topic per member here.  So I have just merged your recent post in Introductions back here.  Keeps all your pertinent information in one place.

 

1 hour ago, Mocha said:

I have been off nortriptyline for 2 years, and had some decent intervals, but recently feel like I am starting all over again . . .is that possible?

 

And yes, it is possible.  To have later waves of symptoms, or:  PAWS,(protracted acute withdrawal syndrome), how long does it last?

The Windows and Waves pattern of stabilization
It doesn't end at "0"

Do withdrawal symptoms always show up right away? Delayed onset.

What is withdrawal syndrome?

 

What kind of symptoms have popped up again?

Dr. Joseph Glenmullen's withdrawal symptom checklist

Are you still experiencing alot of pain?

 

And do tell us about your "decent intervals" too!

 

Good to see you back, and thank you for updating.

 

L, P, H, and G,

mmt

Edited February 18, 2020 by manymoretodays

[Mocha]

Thanks.  Will try to book  - but almost certainly too late now.

 

I was on it for neuropathic pain from a spinal cord injury, and tapered ~ half way, then went CT in April 2018.  I did alright for the first 3-4 months, then had a terrible 3 months in the Fall, and then had another long window in Dec.  With again a terrible Spring, then a decent 3 months in the summer.  In fact, by end of summer was able to resume full activity.  My problem is I was also put on a benzo - in  part for the hyperesthesia - , and it seems every time I try to reduce the benzo the w/d syn re-ignites.  So end of last summer I tried to reduce benzo - very slowly - and had a 2.5 month relapse. 

 

By late Nov I was doing better, and in early Jan tried to cut benzo again, and have been back in severe w/d for the last 6 weeks.  My predominant sx's are burning pain, cramping, malaise, , excess pharyngeal secretions, fatigue and sleep disruption.  I have a night time "burning skin" syn, but worst pain in feet and legs, where the original neuropathy was . .  and still is to some extent. 

 

 I was improving last week, and - coincidently, no relation (?)  - had a new prescription for the benzo filled, and took a huge crash for the last 4 days.   

 

I am very rigid in my benzo dose schedule - 4 mg AM, 3.5 mid day and 4mg 10 PM - and rarely drink - or if at all 1 /2  or 1 glass of wine a week . .  . 

 

I also have a very definite pattern across the day with trouble first getting up, that wane, then severe sx's starting around 10 - 11 AM, lasting 1-3 hours, improving, and returning around 5-6 PM for another 2-3 hours.  That has been consistent since I first began to taper - 5 yrs ago.  

 

Makes no sense . . . makes perfect sense . . . Have tried clonidine, anti-histamines, cannabis, CBD, all without benefit.  Use Mg tab's 

 

I just expected "some" improvement at around 2 years . . .

[manymoretodays]

6 hours ago, Mocha said:

My problem is I was also put on a benzo - in  part for the hyperesthesia - , and it seems every time I try to reduce the benzo the w/d syn re-ignites.  So end of last summer I tried to reduce benzo - very slowly - and had a 2.5 month relapse. 

 

By late Nov I was doing better, and in early Jan tried to cut benzo again, and have been back in severe w/d for the last 6 weeks.  My predominant sx's are burning pain, cramping, malaise, , excess pharyngeal secretions, fatigue and sleep disruption.  I have a night time "burning skin" syn, but worst pain in feet and legs, where the original neuropathy was . .  and still is to some extent. 

 

 I was improving last week, and - coincidently, no relation (?)  - had a new prescription for the benzo filled, and took a huge crash for the last 4 days.   

 

I am very rigid in my benzo dose schedule - 4 mg AM, 3.5 mid day and 4mg 10 PM - and rarely drink - or if at all 1 /2  or 1 glass of wine a week . .  . 

 

I also have a very definite pattern across the day with trouble first getting up, that wane, then severe sx's starting around 10 - 11 AM, lasting 1-3 hours, improving, and returning around 5-6 PM for another 2-3 hours.  That has been consistent since I first began to taper - 5 yrs ago.  

 

Hi again Mocha!

And oh.  You may in part be going through some benzo WD then, in addition to the nortriptyline WD.

What benzo are you taking?

Would you add in some dates of the benzo to your signature?  Note dates, the name of the drug, and then total daily doses and tapering dose changes made.

Just go to AccountSettings/signature and you should be able to add it to your present signature.  Make sure and hit the SAVE button after editing there.

 

I think I'll ask @Shep to have a look too.  Maybe Shep can offer some suggestions and/or further information to you around the benzo now.

 

Thanks for the nice inclusion of all your information too, Mocha.  And ugh, sorry it's been so rough.  Sounds like WD.

Are you using any OTC stuff or supplements now?

 

L, P, H, and G,

mmt

[Mocha]

Thanks.  I added that info.  I was on 15 mg of diazepam, and tapered to 11.5.  The first 2.5 mg reduction was not that hard but then I seem to have gotten stuck because any reduction sets off nortriptyline w/d sx's.  

 

Over the last 5 days, the day I refilled the diazepam script, I have started to have severe w/d which starts about 2-3 hours after the diazepam dose, and is relieved, at least partially, by the next dose.  I entertained the idea that this "batch" did not have the same bioavailability, but that is not plausible.  I did take one "rescue dose" 5 days ago when this started, but have stayed on a rigid schedule since.  With continuous pain, no sleep, etc.   The sx's are really more like severe nortriptyline w/d, but it is hard to distinguish, and it is relieved by the following dose of diazepam.  I am not willing to go up on the diazepam dose either, it was such a struggle get down to here.  I seem to be extremely sensitive to variation in diazepam.  Perhaps one or doses was not well absorbed . .  . 

 

Any advice appreciated.  

[Shep]

1 hour ago, Mocha said:

Thanks.  I added that info.  I was on 15 mg of diazepam, and tapered to 11.5.  The first 2.5 mg reduction was not that hard but then I seem to have gotten stuck because any reduction sets off nortriptyline w/d sx's.  

 

Mocha, this isn't showing in your signature. Please include the date did you started diazepam and the dose and when did you make each reduction. 

 

Account Settings - Create or Update Your Signature

 

Don't forget to click on the Save button. 

 

1 hour ago, Mocha said:

Over the last 5 days, the day I refilled the diazepam script, I have started to have severe w/d which starts about 2-3 hours after the diazepam dose, and is relieved, at least partially, by the next dose.  I entertained the idea that this "batch" did not have the same bioavailability, but that is not plausible.

 

If there was a change in manufacturer, that may explain the upticks in symptoms. Some people do have problems switching manufacturers. Please see:

 

It Ain’t Necessarily So: Common Misconceptions About Brand Name and Generic Drugs

 

Do you have any of your older diazepam pills left? If not, check to see if there was a manufacturer change and if so, contact your pharmacist to see if you can get any of this previous manufacturer's pills. 

 

If you aren't able to switch back, you may have to allow yourself to adjust to the new formula. Because you are feeling better when you take the next dose, my hunch is it may be less potent. So you might try increasing the dose by a small amount (maybe 5% to start) to see if that helps. Don't look at it as a set back because it's possible there was a slight variation in the active ingredient, so the updose of the new pill would bring it up to what the old pill was. 

 

19 hours ago, Mocha said:

I am very rigid in my benzo dose schedule - 4 mg AM, 3.5 mid day and 4mg 10 PM - and rarely drink - or if at all 1 /2  or 1 glass of wine a week . .  . 

 

When was the last time you had wine (or any kind of alcohol)? Was it within the past 5 days, since you refilled your diazepam script? If so, it could be the alcohol. Some people become sensitive to alcohol during withdrawal.

 

Also, please note that alcohol affects the same GABA receptors as benzos, so we recommend avoiding alcohol while you're on the drug and during your taper. Some people report setbacks for a long time after coming off these drugs, so it may be something you'll want to avoid until you're 100% healed, just to be safe. 

 

 

[Mocha]

Thanks - it is the same manufacturer - Teva - and I combined the few I had left over.  I was concerned about quality of pill, but prob unlikely, and thought about up-dosing - couldn't answer the question of how much.  I think I need to tough it out a bit longer.  

 

I have 1/2 or 1 glass of wine a week.  Against the background variation it is hard tell any effect, but agree it should be avoided.

 

Will fix signature.

[Altostrata]

Hello, Mocha.

 

We need an overview of your drug and symptom pattern. Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.