MoveIt Nortriptyline Adverse Reaction?

[MoveIt]

Hi all! New here, but I have been lurking this forum for a few weeks. I will share my story...

 

I will first note that don't really have a medical history of anything except for lots of physical stuff - sprained ankles, torn muscles, broken bones, herniated discs, etc as I WAS an athlete (now I'm mostly house and bed bound). No history of chronic illness, auto-immune, mental illness except some anxiety and bouts of insomnia here and there. I don't think I've ever even had a panic attack. 30F.

 

August 2022: I got LASIK.

Sept - Oct 2022: Moved cross country and LASIK outcome (had residual prescription) made me really stressed, so I wasn't sleeping well. I took one Xanax pill 0.25mg (smallest dose) before bed on and off for a few weeks. It wasn't really helping my sleep and made me feel really fatigued during the day so I stopped. Developed light sensitivity along the way.

Nov 2022: I was (mis) diagnosed with cornea neuralgia, and given Nortripyline for eye pain. I now realize my pain was caused by an ointment I was instructed to use, not nerve damage. Light sensitivity might have been caused by Xanax, unsure about that one.

 

Two days before taking my first dose of Nortrip, I took 0.25mg of Xanax to help me sleep again. That was the last time I ever took Xanax. Then for the Nortrip, I was instructed to take 10mg every three days, titrating up to 50mg. I took 10mg for four days, and was relatively fine. Looking back, I had some side effects like POTS, constipation, and inability to feel my bladder was full. On the fifth and sixth day, I went up to 20mg. My feet started tingling. I was instructed to bump back down by my doctor. Went back to 10mg. Tingling went away. Thought I was supposed to go back up, so I did. Back to 20mg for two tdays and then tingling came back along with crazy limb jerking. Like, both my legs flew up a foot in the air while I was in bed. I messaged my doctors, wasn't given clear instructions, so I quickly tapered down to 10mg and then 0mg out of fear.

 

I thought I'd be fine because I was on the medication for 11 days. Did an intense workout, which triggered all the symptoms I had on the medication the next day. Kept working out because I wasn't sure what was going on and doctor said it was ~AnXiEty~. Since then, all went downhill and I have developed a laundry list of 40+ symptoms, including tardive dyskinesia (I was inspired by moderator's WiggleIt's story, hence named myself MoveIt). The TD started when I took a Zrytec. I immediately had an adverse reaction to it with stabbing pains all over my legs, got a big brain zap, and then my legs started moving by themselves. Over a few weeks it progressed into full body flails and vocal spasms. A week or so later, I took a melatonin and made it worse, my hands started opening and closing. Now I seem to be acquiring new "movements" every 1-2 weeks. I have involuntary full body flails, tongue sticks out of my mouth, eye blinks, hands open and close, feet tap, ,face scrunch, lips purse. My other symptoms have been getting worse as well and my threshold to triggering them is getting smaller. I am finding I can't even walk fast without triggering a "wave" and then feeling like I have the flu + hungover + extra noise sensitive the next day, similar to CFS I guess. Almost all my symptoms are physical (for now...). Now I realize my nervous system is super fragile and am careful with medications and supplementation.

 

In case helpful, here's the list of my symptoms as of today. I am sure I am missing some...

 

• Insomnia

• Flickering lights when eyes open, like I’m blinking  

• Hypnogogic Hallucinations

• Flashes of light before sleeping

• Arc flashes in peripheral of eyes (checked with retina doc twice, nothing wrong)

• Strobe light effect in dark

• Light / Noise sensitivity

• Tinnitus

• Random ear noises, such as car crashing or fluttering

• Ear pain

• Brain zaps 

• Randomly feeling bouts of terror when falling asleep

• Stop breathing while sleeping

• Chest tightness/pain

• Cortisol rushes

• Heart palpitations

• Can hear heart pounding 

• Tingling

• Pins and needles everywhere (including in mouth and tongue)

• Burning patches 

• Stabbing nerve throughout body / face 

• Muscle pain? Or dull nerve pain, unsure

• Tremors

• Hypnic jerks 

• Dizziness 

• Jaw jerks

• Constipation

• Inability to feel full bladder

• Missed every menstrual cycle

• Exercise intolerance

• Headache

• Fatigue

 

I haven't really seen anyone on here with similar dosage or reactions like me. I see patterns if I combine stories like WiggleIt's, those with ADR, and those with exercise intolerance. I can't even say I can 100% relate to windows and waves. I will have a random cluster of symptoms anyday, nothing seems constant except for the tingling and the progression of symptoms. I'm also not even so sure I had an adverse reaction because I am now learning the side effects I had were actually normal on the medication, and that a lot of people "push through" and it eventually subsided. I am also unsure if being on Xanax so shortly before had some adverse effect. Also did I "kindle" myself with the Xanax by taking it on and off before the Nortrip?

 

 

 

[Gridley]

Welcome to SA, overt.  I'm sorry you're going through this.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements.  No symptoms.  A brief list format is best.  Please include supplements with dosages.

 

Account Settings – Create or Edit a signature.

 

It sounds as if you've had an adverse reaction to the Nortrip.  It doesn't fit the usual pattern of ADR, but as you wrote, it could have been the intense exercise or the Xanax or it could have been dosage related.   What's clear is that your system is extremely sensitive right now and that, as you've said, you need to be very careful abut how you take care of yourself, what exercise if any you do, and what medications and supplements you take.  What supplements are you taking?    

 

In our experience with adverse reactions, the symptoms parallel withdrawal symptoms, and as with withdrawal, they fade with time.  Unfortunately there's no way to predict how long it will take. 

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium (glycinate is a good form) and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Given your symptoms, i wold be very careful with these.

 

This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community.  I hope you’ll find the information in the SA forums helpful for your situation.  I'm sorry that you are in the position that you need the information, but I am glad that you found us.

 

 

 

 

 

 

 

 

 

 

 

[MoveIt]

Hi there - thank you for your response!

 

I am currently taking vitamin d3 (bumped down from 5000 IU to 1000 IU this week), probiotics, and omega 3. 

 

I pushed myself too hard yesterday by walking a lot (go figure) and last night I had a "wave." Insomnia, acquired new TD movements (head nodding), night sweats, dreaming while awake, and possibly restless leg syndrome?

 

I have an appointment with a neurologist on March 2, but I doubt they will be able to help much. Trip to doctors will probably trigger a crash if anything, but best to get everything documented. 

 

I'm assuming I probably wouldn't benefit from any reinstatement due to my short time on the Nortrip and the fact that I'm three months from my last dose? Thoughts? 

 

Most of my symptoms happen at night, when I'm in a relaxed state, or when I'm half awake (that's when most of the TD movements emerge). Is this common? A good thing?

 

Thanks!

MoveIT

 

 

 

[Gridley]

32 minutes ago, MoveIt said:

 

I'm assuming I probably wouldn't benefit from any reinstatement due to my short time on the Nortrip and the fact that I'm three months from my last dose? Thoughts? 

From what you've written, it seems to me very probable that the symptoms you listed resulted in large part  from an adverse reaction to Nortriptyline, which would strongly argue against reinstating it.  When I look at your list, a large number of your symptoms leap out as almost textbook withdrawal/adverse reaction symptoms.  

 

They're not from withdrawal (you were only on the drug 11 days and generally it takes a month to put someone at risk of withdrawal) but they are consistent with an adverse reaction.  So I wouldn't recommend repeating the process.  Your system has been destabilized by the drug and likely the stress of the exercise.  What it needs now is rest to allow healing.

 

 

Edited February 19, 2023 by Gridley

[Tranquilpeace]

@MoveIt

 

Hello, I'm no expert but every single one of your symptoms I experienced with nortriptyline!!! I suffered an adverse reaction and I was on it for about 6-8 weeks.

 

 

As a matter a fact the form of hallucinations you're having I am still suffering with four months later. I actually had no idea that it had a specific name or that it was hallucinations. Even the pictures online are accurate freaked me out a bit. Those type of hallucinations mixed with intrusive thoughts has driven me nuts during my healing experience.

 

I was on nortrip for migraines. And it has led me down a rough recovery path have even developed fears of being bipolar or schizophrenic. Because it has  caused me to have anxiety depression etc. Things which I NEVER suffered before the medication.

 

But anyways rest assured I am 99.9999% sure you're symptoms are from the nortriptyline including the difficulty working out cause I was a bit of gym fanatic before my reaction and withdrawal.

 

The good news is I don't believe you were on a heavy enough dose or for long enough to suffer withdrawal syndrome! But then again nothing surprises me after my experience with this medication cause I am still recovering and still having windows and waves. But it gets better just have to ride those damn waves 

 

 

 

[MoveIt]

Hey Tranquilpeace! Yes, I have seen your posts.  Have you made improvements since your last dose?

 

Yeah, I keep getting told that I wasn't on it for very long or that the dosage wasn't very high...but here we are three months out and only getting worse, sigh. Seems like every time I get my heart rate up at all (that includes laughing too much!) a few new symptoms pop up the next day.

 

The hallucinations don't bother me as much anymore. They were my one of my first symptoms. They aren't great, but I've learned to have a positive relationship with some of my symptoms, otherwise, I won't fall asleep! i.e. yay, brain zaps are here, means I'm falling asleep! sounds weird but it's the only way I can cope lol

 

Edited June 9, 2023 by Karma
Name update

[Tranquilpeace]

That's a very positive way of taking the symptoms! I wish I had thought like that at the peak of my WD

 

My symptoms are better easier to handle. Even had a good few weeks of almost being me again!!! Buuut lately have been back in a wave with the intrusive thoughts portion and been suffering from depression. Which is hard cause it's flat out from the medication and I know it cause I have never had depression even the slightest. It sucks and gets old fast especially intrusive thoughts.

 

But I know it will pass, patience is the hardest part.

[Iman]

Hey there guys,

 

@Tranquilpeace @MoveIt @Gridley

 

Dear Moveit, I've been dealing with all the symptoms you've been experiencing for almost 6 years now. You've listed 40 but mine exceed 60. Good thing you're in a positive relationship with your symptoms. This is the ultimate solution to mitigating the bitterness of the whole experience. I look upon them as friends and have accepted them as a part of my life. Once this true acceptance occurs, the symptoms gradually lose their grip and fade away, believe it or not acceptance and positive attitude are the keys to overcoming withdrawal in the end.

 

I believe I suffered an adverse reaction but was forced by my doctor to persist and even increase the dose to 100 mg for merely a vestibular vertigo which could have been treated with non-drug techniques and maneuvers. After I realized the whole bundle of bizarre symptoms (which I never had in my life pre-Nortrip) were caused altogether by the Nori poison, I began my taper which not surprisingly brought about withdrawal symptoms, actually adding insult to injury (the initial adverse reaction).

 

So, as you can see I had to deal with 3 monsters: 1. The drug direct side effects 2. The adverse reaction 3. Withdrawal symptoms. After almost 6 years of taking the poison and about 4.5 years of tapering, I'm now on 2.4 mg of the drug. I'm doing good and most my symptoms have either faded away altogether or lost intensity and severity. Some symptoms are still there but I have grown totally indifferent to them and merely observe them from above when they occur(meta-coginition),  quite like ignoring the constant nagging of a baby.

 

This whole Nori experience was a hell on earth for me but has taught me a lot and made me a stronger more resilient person. I'm happy I had to endure and go through this experience as I can now fully value and cherish the existence of light in my life. You ll get through this, your experience is nothing new and will pass soon enough, your test will be a whole lot easier than mine, rest assured. I'd be more than happy to help if there's anything I can help you with. Keep it up and take it easy . 👍🫡🙂⚘️🌷

Edited June 9, 2023 by Karma
Name update

[Tranquilpeace]

@MoveIt 

 

I also wanted to mention that I hope you seeing the posts I have made helped you!! After realizing I was going to be okay that became one of my biggest reasons for posting, and I check here often for that reason now vs. for my own recovery anymore. I want to document everything I have gone through and go through, the healing process the waves the windows the things that helped and didn't help etc.

 

At the time I went through my WD ADWarrior and Iman were the only guys I could find with information, experience, solutions, and help and they very much helped save me from the horrors is the nortriptyline poison.

 

If you have time and a chance to drive into @Iman @ADWarrior

Posts and advise l, to include the long thread the three of us shared please do it. Iman is an amazing source of calm and reassurance and the information they both shared with me was so incredible and they are amazing people with so much experience in handling this beast that I literally thank God for them everyday

 

[Iman]

@Tranquilpeace

 

It's a huge pleasure for me to hear such nice words from you about myself. You're actually being too kind to me dear Tranquilpeace. You're an enormous source of inspiration and morale for all of us, so passionate and filled with positive energy and enthusiasm. 

 

I believe once you're in withdrawal and get into it long and far enough, you begin to see things differently. The rules withdrawal and the side effects of the poison itself dictate to us, reveal a whole new side of life; one which sounds horrendous and looks like a hideous and relentless monster but as time goes by downgrades to a constantly-nagging child. This wholly new and unfamiliar face of life comes with its own unique virtues.

 

In simple terms, once your new YOU gathers enough RESILENCE and TOLERANCE to grow accustomed to the presence of the monster and take the bull by the horns, no monster in the world could possibly bring this new YOU down. The new YOU's emergence is inevitable given enough patience and effort is invested. Now, once the horrible heydays of withdrawal, adverse effects and ill effects of the drug begin to draw to a close, your previous YOU which was previously bound in chains gradually frees itself and begins to surface.

 

The NEW YOU which is an invariable product of the tough days of drug and its withdrawal battlefield is now hand in hand with your pre-withdrawal YOU (the one you're now longing for). I'm not there yet but there're very brief moments of this two MEs' coemergence I experience some days and there's nothing sweeter and more pleasant in the whole world than this unique experience that only WE withdrawal sufferers get the chance to experience and live with.

 

The whole ordeal is worth it. We're living through bitter days only to live the unique upcoming better days. I hope I haven't been too complicated and unintelligible with this. 😅😅 BTW, I just came out of a week-long wave with almost all the symptoms emerging  in one pack a few days ago. Befriend the waves as once they happen, they signal there's a new patch of recovery is on its way and as soon as they're over you get to see the new benefits and recovery signs. You're on the right track dudes. Dear @MoveIt let us know how you're doing and never forget that we're always there for you. 🙏🌷👍

[WiggleIt]

Hello @MoveIt. Just catching up and sending love.