PrayingWarrior: nortriptyline fast taper

[PrayingWarrior]

Hi All,

 

I'm a 29 year old female and in September 2015 I became extremely ill. The doctors couldn't figure it out. I was having trouble eating, abdominal pain, nausea, migraines and weight loss. In early 2016, I believe March, I was hospitalized. During that time I was diagnosed with gastroparesis.

 

Over the next couple months I continued to be ill and lose weight so I was referred to a specialist (gastroenterologist) in my state. He diagnosed me with Visceral Hypersensitivity and prescribed amitriptyline 25mg. I took that medicine for about 2-3 months and it made me tremble slightly so I was switched to nortriptyline 25mg. That's when I started to feel better. The nausea stopped, abdominal pain decreased drastically and I was able to function.

 

However, my migraines weren't getting much better so I was referred to a neurologist. He thought it best to add Gabapentin 600mg to help with that. I took half 300mg off and on for maybe a month but didn't like how it made me feel so I stopped. It made me extremely drowsy and unproductive. So the neurologist decided to increase the nortriptyline to 50mg. It did help but then I started getting slight abdominal pains again, nausea, lightheadedness, hot flashes. I know now this was due to the medication. I just didn't know then. I also started getting muscle weakness in my hands with occasional trembling. The neurologist did a few test but wrote it off as nothing.

 

When the abdominal pain started to increase around December 2017 they decided to increase it to 75mg. I was hesitant but trusted the gastroenterologist. I wish I hadn't. Over the next few month I would get extremely moody and cry from time to time. I also started jerking in my sleep, tremors and horrible hot flashes. Ended up in the emergency room a time or two due to the horrible abdominal pain. I kept thinking it was due to my so called abdominal issues returning but then I started reading and realizing that it may be the medication.

 

November 2018 I told the doctors I wanted to stop taking Nortriptyline 75mg because of occasional hand trembling and jerking in my sleep along with some mood swings I felt were due to the medication. He decided to taper me off over the course of 2 weeks. 50mg for a week then 25mg for a week. I took my last does on November 21st 2018.

 

On November 23rd I began experiencing the worst symptoms of my life. Whole body trembling, pacing, insomnia, vomiting, nausea, extreme anxiety, panic attacks, flu like symptoms, negative thoughts, crying uncontrollably, hot flashes, abdominal pain. Emergency room 3 times with no help. This went on for about 3 weeks then it began to lessen. Not stop just lessen. I was able to function and go back to work and school full time until about a week ago when most symptoms returned plus blurred vision and trouble focusing. I did began seeing a therapist once the withdrawal started to help with the anxiety and panic attacks. He has been helping with breathing techniques and how to stay come. 

 

At this point I'm not sure what to do. During my period when things lessened I had windows each day when I felt myself which made me think I would eventually be okay. Now I'm not so sure. I'm trying to keep the faith but I'd be lying if I said I wasn't scared. It's been almost 3 months now and I'm wondering if I should reinstate and taper off the right way. 

 

Thank you all for reading and for your help. 

[WiggleIt]

Dear PrayingWarrior,
 

Welcome to this support group.  Let me start by reassuring you that I've been through awfulness and back with nortriptyline.  That's one of the meds I grappled with.  The muscle weakness and hand tremors you described are very familiar territory for me.  Let me assure you that I improved with time.

I also empathize very directly with the way your doctor slammed you through a rapid taper.  The same thing was done to me by a doctor.  She told me to rapid taper so fast that I later found out it had actually been equivalent to a cold turkey. 

You're going to get better, PrayingWarrior.  I did, and you will.  You've already said you had a phase where your symptoms lessened, and that is evidence that your body knows how to heal, even if takes time and looks unexpected as you go through it.  Healing from psych med withdrawal (WD) is not an uphill line.  It's a squiggly line, with two steps forward and one step back... or two forward and one sideways.  We refer to that as "windows and waves."  A window is good phase or improvement phase, and a wave is when the WD effects hit again.
 

What you are going through when you improved a bit and then worsened again actually is the pattern of healing in WD.  It's just a gross pattern that most doctors don't know how to help with, and that's why this site is here, because we have people living through it and who have lived through it.

In my case, I did not end up reinstating, but we do have information here on SA for people who decide to reinstate.  If people decide to reinstate, the dose would not be the full dose they used to be at, but would be a smaller dose.  Reinstating at the former, full dose can be overstimulating, especially since you've been off for 2-3 months already.

I'm putting some links below so you can read about the windows and waves of recovery, and also so you can read about reinstatement if you decide to do that.

Also, distracting yourself during WD is a huge key to getting through it.  I don't care how much people criticize internet TV, it was another thing that helped save my life in addition to this website.  I certainly couldn't read books in WD or even have intelligent conversations.  I clung desperately to Netflix and am not ashamed about that in the least.  I needed to turn off my brain, and Netflix made that happen.  !Viva la tecnologia!  Distraction and rest are really key for WD.  If you need to binge every TV series online ever made in order to distract yourself, you do it!

About reinstatement:
https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/?tab=comments#comment-33809  

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

 

 

Edited February 13, 2019 by WiggleIt

[WiggleIt]

Oh, one more thing!  Can I ask you to set up a signature that will appear every time you post?  We have your story in detail in your post, but it's also really helpful to see your medication history at a glance in your signature.  Here's how to do that:

a.) Look at the top right of the page where your name appears
b.) Click on your name and you'll see a pull-down menu appear
c.) Under that menu, click on Account Settings
d.) You'll get taken to a new page.  Look at the left side of that page
e.) Click on Signature
f.) Fill out a short list of your medication history and dates you took the meds in the box that pops up.  (For example, you can write Sertraline 60 mgs from July 2016 to Sept 2018.)  
g.) Click Save and then you can go back to the rest of the site and keep chatting

Thanks!

[shawny]

Hi Guys , 

 

I am also a sufferer of Amitriptyline 10 mg for 1 month ( can u believe that ) , i took it for a month ( 10mg ->0 mg ) i guess that CT but i took it for month not sure 

 

Withdrawal ( once the drug left my body , actually happened 2 weeks once i stopped it , let's say dec 1st week ) , ended up with 

 

1. floaters

2. anxiety

3. Grainy vision 

4. Tinnitus 

 

it's been 2 months now , i m healing i feel im healing but not there , but compared to what i what i was may be 5 % better .

 

@WiggleIt : u had grainy vision and tinnitus ? i started having afterimages also

 

[WiggleIt]

12 hours ago, shawny said:

Hi Guys , 

 

I am also a sufferer of Amitriptyline 10 mg for 1 month ( can u believe that ) , i took it for a month ( 10mg ->0 mg ) i guess that CT but i took it for month not sure 

 

Withdrawal ( once the drug left my body , actually happened 2 weeks once i stopped it , let's say dec 1st week ) , ended up with 

 

1. floaters

2. anxiety

3. Grainy vision 

4. Tinnitus 

 

it's been 2 months now , i m healing i feel im healing but not there , but compared to what i what i was may be 5 % better .

 

@WiggleIt : u had grainy vision and tinnitus ? i started having afterimages also

 

Dear @shawny,

Is it okay if I answer these questions on your intro thread, since they are about your symptoms?  I'm heading to your thread now. 

[PrayingWarrior]

@WiggleIt thank you so much for responding and for your encouraging words. I keep telling myself that this will all get better but it's easier during the windows verses the waves. I had about 2 okay days this week but then it all came rushing back hard. I had to leave work early the last couple of days because I was so unwell. I keep debating if I should reinstate but I'm honestly so scared. If I were to reinstate how do I know which dose would be appropriate at the stage? 

This has all been quite overwhelming (especially the anxiety and negative thoughts when I such a positive person) but I'm very thankful to have found this site. I'm still reading through the site trying to take everything in.

@WiggleIt when did you symptoms of muscle weakness and hand tremors improve? And did tapering off your other meds help alleviate some of the WD symptoms? 

 

Also thanks for the Netflix suggestions. I will definitely try it whenever I have time. Unfortunately right now I work night shift while going to school in the morning. 

 

@shawny I'm sorry you are having to go through this as well but I really hope things start improving for you soon. I also experience these symptoms. They seem to come and go. How are you feeling today? Any improvement? 

[shawny]

@PrayingWarrior I don’t know how to put it 

 

so I stopped Amitriptyline on 

 

1. Nov 10 2018 , until then no issues jus anxiety I was able to ride it , I had muscle pain neck pain amevery body pain 

2. Nov 24 to be precise , when drug left my body I got tinnitus ( withdrawal started)

3. The tinnitus was there only when I went to sleep very minimal n also grainy vision which I see on the walls n like shimmers o gas.

4. In December all these symptoms aggrevated plus brain zaps , I would be able to sleep as I would wake up see flashes of light . 

5. New year eve worse Eva same brain zaps , close eye visuals , like sparks red spots, weird visions I can’t explain on this . 

6. Whole o jan this happened n I lived with it thanks to this site I clung on spoke to people came to know it’s normal 

7, feb I’m ridin this still , waking up with grainy vision , afterimages, floaters n tinnitus ( it’s more on the right now , in jan it was on the left ) 

8. Anxiety not there in feb but it s there when I get my period.

 

trust me on this throught jan , 

 

there were times ones I found improvement, there were days   They call it windows 

 

1. I didn’t have grainy vision may be 3 days In jan I enjoyed it I know my

body is healing

2. My tinnitus is slow some days

3. Floaters have become lil transparent 

4. N my night vision has improved I felt I had dimmed vision one day I felt everything bright tat time I knew my vision had been dimmed n I improved 

5. In dark I used to not see pitch black when I was on the med n during withdrawal but now I see pitch black .

 

 

what I did :

 

nothing, wait patiently for the days to go over , cut down on sugar n tea m not sure if it’s working but it’s a mental block as u don’t know if ur symptoms have come cause of this .

 

have my symptoms flared up even though I stopped this ? , yes some days are bad for no reason n some days are good .

 

 

there are tons o people here u have healed , I have spoken to them on messages n they say time n nature .

 

i might take a year o more for jus 1 month of tablet but it’s worth it .

 

remember each day u survive u win each day n each day ur body is working to come to homeostasis.

 

ask urself ? 

Does it bother u where u can’t function? 

If not go on with ur work n take ur time into something else .

 

trust me may be I’m 5 percent better but I know I will n we all will .

 

mean time don’t play with any meds for immediate relief it can back fire n it might take more time for recovery .

 

@WiggleIt hope I write this as ur a moderator jus check if I can mention all this 

[WiggleIt]

7 hours ago, PrayingWarrior said:

thank you so much for responding and for your encouraging words. I keep telling myself that this will all get better but it's easier during the windows verses the waves. I had about 2 okay days this week but then it all came rushing back hard. I had to leave work early the last couple of days because I was so unwell. I keep debating if I should reinstate but I'm honestly so scared. If I were to reinstate how do I know which dose would be appropriate at the stage? 

This has all been quite overwhelming (especially the anxiety and negative thoughts when I such a positive person) but I'm very thankful to have found this site. I'm still reading through the site trying to take everything in.

@WiggleIt when did you symptoms of muscle weakness and hand tremors improve? And did tapering off your other meds help alleviate some of the WD symptoms? 

 

Also thanks for the Netflix suggestions. I will definitely try it whenever I have time. Unfortunately right now I work night shift while going to school in the morning. 

Dear @PrayingWarrior,

Oh, it is understandably much easier to feel encouraged in windows than in waves!  Your reactions are absolutely normal to what you are experiencing.  It's so hopeful and inspirational to set goals during windows, but then to think during waves that there's no point to having any goals again.  Luckily, it's the windows that tell the truth, it really is.  

I will have to tag another mod to help us figure out what might be appropriate if you reinstate.  Because I did not reinstate, I wouldn't want to hazard telling you an inappropriate amount, but the general consensus on SA is, I think, smaller doses for reinstatement.

As far as your question about whether or not tapering my other meds helped... well, I was cold turkeyed off of my meds.  I was never given the chance to hold one med while tapering another.  My doctors didn't guide me safely, and I didn't discover SA until after CT-ing a TCA and a benzo simultaneously.  Maybe if I had been given the chance to taper slowly, or to taper one at a time, then things would have gone better.

To answer your questions about muscle weakness and tremors: I suspect you are already far more healed than I was during your same timeframe, which is why I'm so confident you're going to get better and better.  For me, it took years for my mobility to improve, as I actually ended up in a wheelchair and on a walker because my damage was so extensive from the psych meds.  When I hear of people having tremors, but they are still able to walk, I honestly become tear-y with relief and feel like a weight is being lifted off my chest, because I cannot stand the thought of anybody going through what I went through.  I spent several years in specialized neuro physical therapy (of the type used for Parkinson's patients, etc.) in order to regain my mobility and to slowly abate the tremors/movements.

I was a grad student, too, once upon a time, so I can quite deeply imagine how much you don't want to lose out on your job or your academic work.  What's happening to you is unfair and frightening, but I was honestly relieved when I read some more of your details.

There is no way to predict how long it will take for you to get better, but I'm confident you will.  You can ask me anything you'd like.  My only hope is that my story doesn't scare people, because, for me and my family, my story is wildly hopeful.  The fact that I am where I am now has got to be encouraging for others!



 

[Altostrata]

Welcome, PW.

 

Are you still taking gabapentin? What dosages, at what times of day?

 

On 2/12/2019 at 4:55 AM, PrayingWarrior said:

I took that medicine for about 2-3 months and it made me tremble slightly so I was switched to nortriptyline 25mg. That's when I started to feel better. The nausea stopped, abdominal pain decreased drastically and I was able to function.

 

I really wish your doctors had left well enough alone and not increased the nortriptyline. It was perfectly obvious you had a tendency to an adverse reaction -- trembling -- to a related TCA. That was a dumb neurologist.

 

It looks like you have withdrawal syndrome from going off 75mg nortriptyline too fast. What we see is that going on and off psychiatric drugs and having adverse reactions to them causes the nervous system to be hypersensitive to drugs and sometimes supplements and even foods.

 

Nervous system hypersensitivity causes a little to go a long way. If I were you, I might try 1mg nortriptyline to start. This is a tiny amount to limit potential adverse reaction. Depending on how it affects you, if you can tolerate that, you might increase a bit.

 

I don't know if this will do anything for migraines. I hope it will reduce the gastro discomfort. Have you tried Elimination or exclusion diets for reactions to food (food intolerance)  ?

 

Using an oral solution is the best way to titrate nortriptyline. It comes in a prescription liquid or you can make your own, see

 

Any doctor, such as your GP, can prescribe liquid nortriptyline. Please let us know how you're doing.

[WiggleIt]

@PrayingWarrior, I really dig @Altostrata's advice to only try a 1 mg reinstatement of nortriptyline.  I'm not surprised you were prescribed nortriptlyine in the first place by your gastro.  GE docs do prescribe it often, although they're not great at recognizing when it's giving bad side effects.  

Because you also have gastroparesis, I have to ask what else your GE doc is currently advising, if anything, to manage that condition.  Is it safe to assume you've been told to eat small meals and pureed foods as part of your approach to the gastroparesis?  (I'm related to a GE doc, by the way, so I'm not just spouting off blindly here.)    

[PrayingWarrior]

Thank you @WiggleIt for you kind words. And I'm so sorry to read of all you had to go through because of these medications. It seriously made me cry. But I'm so happy that you are doing so much better. You are truly a success story if I've ever read one! 

As far as the gastroparesis goes, yes I stick to small meals mostly smoothies and soups to get through the day. I was actually doing pretty well. I had managed to get my weight up from 95lbs to a healthy 130lb (5'4). It took a lot of hard work but these WD symptoms (and I guess hypersensitivity) are doing the opposite. Down 15lbs and beginning to worry. Not able to eat some of my regular meals. I'm hoping things will get better soon especially when it comes to work and my academics. I can't continue to keep missing days due to this. But I'm trusting God for strength to continue to help me push through.

 

Hi @Altostrata I am no longer on Gabapentin. I don't know the actually time frame but it was for no more than 1-2months. The dosage was suppose to be 600mg BID but because of the side effects I only did 300mg HS when I got bad migraines. 

Thank you for the information on tapering Nortriptyline. I'm trying my best to handle the symptoms without going back on the medication due to the adverse effect. But if things don't improve soon (especially the horrible anxiety) I will go with the 1mg dose as recommended. I'm just worried about further weakness in my hands by going back on it. I go to my gastroenterologist on tomorrow so I will discuss this with him. Thank you. And I agree with you on the Neurologist. I am currently looking for a new one. 

 

@shawny I replied to your message 😊

[shawny]

@PrayingWarrior : u sent me a message ? 

I didn’t get it  

 

b strong , we ll get thru this  

[Altostrata]

On 2/19/2019 at 9:44 AM, PrayingWarrior said:

Thank you for the information on tapering Nortriptyline. I'm trying my best to handle the symptoms without going back on the medication due to the adverse effect. But if things don't improve soon (especially the horrible anxiety) I will go with the 1mg dose as recommended. I'm just worried about further weakness in my hands by going back on it.

 

Side effects are usually dosage-related. A small dosage should cause fewer side effects. You may be able to get the benefit of a bit of nortriptyline without the adverse reaction.

[PrayingWarrior]

On 2/20/2019 at 2:18 PM, Altostrata said:

 

Side effects are usually dosage-related. A small dosage should cause fewer side effects. You may be able to get the benefit of a bit of nortriptyline without the adverse reaction.

@Altostrata my doctor didn't think I was still going through withdrawals which is very frustrating. So he wouldn't prescribe the liquid form.  I'm not sure what to do. I'm able to manage most of my symptoms just fine, thank God. But the anxiety and irritability is starting to really get to me. I can't control it. The excessive worrying over anything is nothing I could have ever imagined. I'm doing therapy and meditation so I'm trying to give it time. But I'm so exhausted. Any recommendations or advice on what I should do? 

 

@WiggleItAny coping mechanisms for dealing with this anxiety? 

[Altostrata]

Few doctors know anything about withdrawal syndrome.

 

Can you ask your doctor for a nortriptyline prescription? You can make your own liquid. See

 

If you find this doctor unhelpful, any doctor can write the prescription for the liquid or tablets.

[PrayingWarrior]

I had a window of okay days over the last 2 weeks. I wasn't symptom free but they were manageable. However, the last couple days have been brutal. The agitation, irritability, anxiety and insomnia has been overwhelming. My therapist also said rebound depression as well. What puzzles me is I never had depression to begin with. Anyway, I really hope this wave ceases soon and brings more okay days. I keep telling myself I'm not as bad as I was in Nov 2018 to push through. 

 

My GP nor neurologist would prescribe the nortriptyline so I just keep trying to overcome this one day at a time. My faith is what's giving me strength. 

[shawny]

Hi praying warrior  

 

im May be 50 percent better , 

i jus read ur previous post  I’m sorry u goin thru a lot . 

 

Even i have never had depression o anxiety in my life ever it’s due to drugs sorry it’s jus a phase ! 

Dont worry ul get thru it  I had anxiety non stop for 4 months n now also it it’s there fr a min o so before it used to be nice for hours soo moddy etc . 

 

We we need to giv it time I was the drug fr 1 month only n this way it did to me .

 

 

my symptoms as o now are 

tinnitus 

floaters 

afterimages 

these are the only ones tat are still lingering tinnitus is due to wax for me from Wat I understand so I’m Gona get it removed n IL update u post tat 

 

afterimages are strong now n floaters are gettin transparent 

 

withdrawal is weird cause when ever a symptom flare s up for me I know it’s Gona. Die soon n I did 

 

my anxiety was worse in jan n feb it disappeared n grainy vision was worse in feb it disappeared in March 

 

tinnitus and afterimages is worse now so I’m hoping praying it’s reached it’s peak n it will die soon .

 

dont lose hope ul get better soon 

[jr0104]

Hi PW,

 

Any update on how you’ve been feeling? We have walked similar paths with Nortrip. I’ve been off for two weeks now and have had increased dizziness and weakness. Hoping your recovery can give me some hope!

[PrayingWarrior]

On 6/10/2019 at 9:34 PM, jr0104 said:

Hi PW,

 

Any update on how you’ve been feeling? We have walked similar paths with Nortrip. I’ve been off for two weeks now and have had increased dizziness and weakness. Hoping your recovery can give me some hope!

Hey @jr0104! How are you feeling today?... This journey has been a rollercoaster. Truthfully, it's been extremely hard, but I do see progress. I still occasionally get muscle weakness, but it only last a couple of days at a time. So does the dizziness. Right now I'm experiencing the chest discomfort, shortness of breath, neuro-emotions and not being able to really focus. My worst part is the anxiety. But this is after having about a week long window of okay days. It's annoying/depressing at times, but I've learned that if I just relax and try my best to accept the sh*tty days, it will eventually subside. And it always does 😊. This journey has taught me patience. The waves of bad days will continue to come, unfortunately. And sometimes they will be so unbearable that you will want to give up(I still have those days). But you have to push through. What's the alternative? Continuing to subject your body to those toxin or fight through it? I choose the latter.