Mike1972: tapering mirtazapine and gabapentin

[Altostrata]

Your symptoms sound like they're gabapentin wtihdrawal.

 

You're only off gabapentin for 14 days. If you're seeing gradual improvement, you may not want to mess with more drug changes. I would not try to push recovery along with drugs unless it's absolutely necessary, let recovery proceed without interference.

 

Please reflect: You've already made a fuss about hypnic jerks. Are your symptoms tolerable? Are they fading? Don't try to find a pill to fix yourself immediately.

 

Many people find fish oil and magnesium supplements helpful, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you.

[Mike1972]

Hi and thanks @Altostrata.

 

I fully understand how over-catastrophizing I must appear, since I definitely got myself worked up about the hypnic jerks. Dr. Google can be a serious fear-catalyst for my anxious-mind-in-crisis. But gratefully, with your notes to me (and with more reading on SA since then,) I can see now just how common the way I’ve experienced these hypnic jerks really is. And in that, I am very thankful to you and much relieved. 

 

I also very much understand and respect your sharply sensible and well-grounded call for me to not be looking to push along recovery with more drugs unless it’s absolutely necessary. I feel this way too! The idea of further "drug tampering" scares the living **** out of me, and I'm only considering/still asking about it because of your question of how tolerable my other symptoms are/aren't.

 

And to that question.....

I have to declare (with long, deep contemplation of this) that in the sense that they actually physically are crippling me (not exaggerating), they're really, truly, honestly not tolerable.  

 

I’ve now filed for medical disability with my employer and the State, taking absence from a job that I absolutely love (I work as a creative designer/futurist), a decision that has been incredibly distressing to make, but being unable to use the computer design interface, as my hands/arms became stiffly, weakly painful and clumsy/unresponsive, I did not have much choice.

 

True, I have been stressed and anxious through Psych-med situations before.
For instance, back in October when i went through the original Mirtazipine CT/WD, I was definitely worried/stressed about things......but at the end of the day I felt a tremendous amount of "it's going to be OK" reassurance in that my situation was fairly-well-trodden (and fairly straightforward) for what individuals go through here on SA, and carried no unusual symptoms or timeline of development. (Thank you guys again for getting me through that harrowing event!!!)

 

But this newest situation feels (to me) fundamentally and worryingly different.

Different in that it is saddled with several unique-in-their-extremity symptoms and uncertainties, even for here on SA......(or at least highly rare, I can't find the same description of combined head-to-toe symptoms here...) With the introduction of Gabapentin, I feel to have been launched almost immediately into a very unique, or at the least very rare (for SA) state of full-body neuromuscular weakness/heaviness/painful clumsy disturbance and searing head-to-toe nerve pain. And so I've become pretty overwhelmed with the idea that these symptoms indicated that perhaps I've somehow landed myself into a very unique bin.....one that even the sharpest and kindest and most experienced minds at SA might not have a solid reference for.

 

I apologize for the length of my posts, I really would keep them shorter if I could. And I realize I am asking for answers where there likely are none.

 

Intuitively I feel that up-dosing Gabapentin in any amount would further irritate my CNS, since it pretty quickly indicated this go-round that it did not like having Gabapentin put into it. And similarly up-dosing Mirtazipine appears risky, just because it's been a bit over two months since the last drop in dose. I guess I wondered if small up-dosing of Mirtazipine might possibly exert a more stabilizing, calming influence over the CNS, since it has been well-tolerated continuously, where Gabapentin seems to have been met quickly with CNS disturbance this time (within the first four days of beginning GBP.)

 

Thanks for your kindness and continued efforts to help guide me Alto.

(And any of the other moderators taking the time to consider / comment to my situation.)

 

Mike1972
 

[Altostrata]

No, your symptoms are not unique.

 

Do you have any gabapentin left? You can easily find whether a reinstatement will help by making a liquid and taking perhaps 1mg to see what it does. As usual, your doctor reinstated an an excessive amount before. This topic explains how to make a liquid Tips for tapering off gabapentin (Neurontin)

[ChessieCat]

I suggest you read Post #1 of this topic which might help you to understand why a small dose is suggested:

 

About reinstating and stabilizing to reduce withdrawal symptoms

[Mike1972]

Thanks @Altostrata and @ChessieCat.

 

Appreciate the continued assurance about my symptoms!!! (I wish I could totally believe it.....I’m trying hard though! If I could at least find someone else on SA whose posts read similarly to mine, I think I might finally regain the calm and confidence through this storm that I so badly seek. Still hunting.)
 

And also — thank you for the links to the Gabapentin liquid taper info. I am going to have to look into whether liquid GBP can be had in my area. Otherwise, its nice to learn it’s a pretty shelf-stable solution if you mix your own.

 

Lastly - hey, I am known for beating dead horses senseless, and I have to keep apologizing for that. But just so I can (hopefully) put to rest my still-percolating curiosities about Gabapentin **withdrawal** as being the force at play here, can I ask (briefly) how you are concluding that? I ask (again) because the symptoms appeared immediately *during initial dosing*, long before any taper-down or cessation of Gabapentin.

 

Or is it more, in your view. a combination of 

1) too much GBP right away in this last 25-day round (causing CNS upheaval)

PLUS

2) Followed by subsequent withdrawal ?

 

You mention my doctor “reinstating” me on Gabapentin, but this wasn’t viewed as a reinstatement, it was meant as a short, fresh course of Gabapentin for nerve pain (pinched nerve in neck.) I had successfully and smoothly tapered off from Gabapentin back last September without issue. 

 

I am clearly *still* struggling with the 10,000-foot view on all of this. You guys earn your Angel’s wings with people like me. I hope you know I wish badly to be able to return the favor of kindness and community involvement to your group and efforts someday.

 

Mike1972

[ChessieCat]

22 minutes ago, Mike1972 said:

If I could at least find someone else on SA whose posts read similarly to mine, I think I might finally regain the calm and confidence through this storm that I so badly seek. Still hunting.)

 

I think it would be better to be working on Acceptance than trying to find someone similar to you.  There are so many variables and some of them you would not be aware of.  For example one person may be a person who can cope with uncertainty and the other can't.  One person may be able to self soothe/self talk and the other cannot.  Your home situation may be chaotic whereas another person may be in a very calm household.

[Mike1972]

33 minutes ago, ChessieCat said:

 

I think it would be better to be working on Acceptance than trying to find someone similar to you.  There are so many variables and some of them you would not be aware of.  For example one person may be a person who can cope with uncertainty and the other can't.  One person may be able to self soothe/self talk and the other cannot.  Your home situation may be chaotic whereas another person may be in a very calm household.

Thanks for that @ChessieCat, but my apologies, I think my meaning might have been mis-conveyed...what I meant was I have been hoping to find someone who had something more similar to my **symptoms,** not so much someone whose mindset or ability to cope/accept was similar.

[Altostrata]

You asked the question about reinstating gabapentin, Mike.

 

Before you ask another question, please re-read this topic from the beginning.

[Mike1972]

Okay so now I am really confused.
 

@Altostrata,I’ll do as you’ve requested, and not ask any more questions for now. But I did (just now) as you asked, and read the whole thread again from the beginning.
 

I don’t want to be difficult or to be in any way appearing to quarrel.  But I honestly couldn’t find any post where I initiated the conversation about reinstating Gabapentin....truthfully that had never even remotely occurred to me as an approach to consider until this past Tuesday, when you suggested it In a post as  another option to alleviate withdrawal symptoms (to reinstate Gabapentin at low-dose (1mg).)

 

From there onward, I can’t be sure how my ensuing posts and questions about reinstating Gabapentin have been viewed, but they all stemmed from/originated in my urgent need to understand why it had been suggested to me as a possible move (especially since this brief reintroduction of Gabapentin had been so swiftly disastrous.)

 

And that confusion for me has continued through today, where I’ve been asking how one comes to the conclusion that Gabapentin is the one to reinstate, vs. Mirtazipine. (Or vice versa.)
 

I think that’s the best distillation of my “reinstatement uncertainties” for the last five or six days. I’m very sorry for any misunderstanding, please know that this makes me more than a good bit sad, since I have wanted from the start to have nothing but respectful and clear communication with you. 
 

I do hope this is taken well, I feel somehow that the perceived semantics of my line of queries have gotten a bit sideways. Hoping to find center again (and your good graces) here soon.

Humbly and respectfully, 

Mike1972

[ChessieCat]

This may be what Alto is referring to:

 

 

[Altostrata]

If you want to reinstate gabapentin

 

6 hours ago, Altostrata said:

....

 

Do you have any gabapentin left? You can easily find whether a reinstatement will help by making a liquid and taking perhaps 1mg to see what it does. As usual, your doctor reinstated an an excessive amount before. This topic explains how to make a liquid Tips for tapering off gabapentin (Neurontin)

 

I don't have any more to say about it.

[Mike1972]

Hello @Altostrata, thanks and understood. 

 

My apologies once again.

Really sorry that I appear to have been inconsistent in my focus, and I know I've asked a lot of questions. Trying to learn in my convoluted way (which doesn't seem to work well in a message thread.)

 

It seems that with my current inability to grasp/focus on a logic for considering the smartest possible up-dose strategy, I am best off to monitor symptoms a bit longer and see if they don't settle further without drug changes.

 

In the meantime, I hope you're still ok with me posting here (and that I haven't lost your compassion or interest in the last couple days.) With that hope -- here's a quick bit of symptom updates.

 

Improvements:

* I've had further improvement in sleep -- for the last two nights the "hypnic jerks" have continued to lessen to the point that they don't interrupt attempts to get back to sleep when awakened. Logged between 6 and 7 hours last night of sleep.

* Full-body nerve pain (neuropathy-like) has thankfully reduced somewhat for the last two days as well. Did not experience excessive "burning" sensation when in bed last night either. 

* Daytime muscle twitch/jerks throughout the body overall still seem to be trending downward in frequency and magnitude for the last four or five days

* Slightly less "burning" sensation in muscles (though still prevalent)

 

 

Still about the same:

* Muscle stiffness / weakness continues. Legs feel like they are full of lead, forearms and wrists/hands feel stiff and fatigued as heck. Exercising them makes them behave even more like they are "dead" and don't want to respond.

* Muscle cramping / tightness in arms/legs continues. Left leg starts to almost move on its own sometimes when resting, its wound up so tight.

* Hands and feet both feel painfully bruised, stiff and clumsy

* Walking continues to feel weakly compromised and unsteady

 

[Altostrata]

Good to hear your sleep is improving. As we've said before, improvement overall is very slow and gradual.

 

Do stretching and gentle exercises for your aches and stiffness. You could try chiropractic, physical therapy, acupuncture.

 

Please pursue psychotherapy or other coaching for your health anxiety. You need to get your mind off your symptoms sometimes. See Health anxiety, hypochondria, and obsession with symptoms

[Mike1972]

Thanks for the reply @Altostrata.

 

Keeping my therapist in the loop. She's been great for my anxiety over the years. Am sure that this current situation will require quite a bit of work with her.

 

Gentle stretches/exercises seem like the order of the day. Will work on that.

 

I have to confess, I still have questions that I hope I could still ask you about my drug situation. 

But I don't want to frustrate you. And yet I am still struggling, still need help in clarifying some of my understanding of how to evaluate *which careful calculated move* (if any) would have the most potential to (possibly) help. I feel caught at a crossroads (much like when I was first in CT/WD from Mirtazipine back in Oct/Nov) that requires a fast understanding of things (and potentially also to act fast), if there's hope of offsetting some of the possible multiple WD forces in effect right now (forces which I am still not quite grasping insofar as "which drug is likely creating which symptoms" at the moment.) As has been said, "It's hard to see the big picture when you're inside the frame."

 

Hope I can somehow present my inquiries to you concisely and not create a sense of repetitive frustration.

 

Thank you so much Alto.

 

Mike1972

[Altostrata]

Our general philosophy is "if it's working, don't fix it". Your recovery seems to be proceeding. We've already told you it will be slow. It's your anxiety that makes you want to take action to push it along.

 

Please discuss this with your therapist.

[Mike1972]

Understood @Altostrata.

Appointment with therapist is tomorrow.

 

In the spirit of "if its working, don't fix it" -

- I'm going to assume that I should also apply that same philosophy to the supplements/sleep aids in the mix (the 450mg of Valerian root and the 3mg of Melatonin), in other words leave them be and make no changes up/down with those, either, for a good long while.

 

This is hard. The instinct, once it's been recognized that damage has been done, is absolutely to want to do *something* to try to help the body and brain out. Something, anything. I suppose that finding inner calm and acceptance IS doing something, however.....and goes a long way towards putting the body and mind in a better place for healing to occur.

 

Thanks again Alto.

[ChessieCat]

5 minutes ago, Mike1972 said:

I suppose that finding inner calm and acceptance IS doing something, however.....and goes a long way towards putting the body and mind in a better place for healing to occur.

 

E.X.A.C.T.L.Y.

[Mike1972]

Updates:

* This is brand-new: Had a major near-panic attack yesterday, it hit out of nowhere. Tunnel-vision, heavy artificial-feeling cloud of doom and terror, racing confused thoughts, deep fear, weakness. Had to go outside and sit on the ground for at least an hour before it was manageable. While in the panic attack, nerve pain magnified intensely. 

 

* Sleep was seemingly getting a slight bit better for a few days, but it has again been collapsing for the last three nights. Not the “I can’t get to sleep” kind of insomnia, this instead is frequent waking up from short, light sleep in a highly-panicked state (and with nerve pain flaring) which takes up to 90 minutes to calm back down from. Deep sleep is not happening.

Yesterday marked 16 days since last dose of Gabapentin. At moment, not able to define if any symptoms are trending towards improving. Hoping the panic attack of yesterday proves to be more of an anomaly, as prior to this I was only experiencing increased anxiety.

[Mike1972]

So Ok this isn't super fun, but for the sake of my current medical providers (and myself), I spent the afternoon today going through all my drug/symptom history journals and notes for the last two years, to try to consolidate them into a single easy-to-read document. Much of the stuff I dug out was from the early traumatizing days in 2018 following neck surgery and subsequent vitamin-toxicity-induced nerve damage (which largely resolved eventually.)

 

In the process, I realized / rediscovered a couple things that I think I should share to my story here. 

 

1) There were a number of meds that I was "on and off" VERY rapidly in late 2018 (doctors trying different things for my nerve pain / sleep) that I didn't account for in my drug signature, and they are not insignificant medications. 

Nortryiptyline, Celexa, Diazepam, Ativan. I will update my drug signature shortly.

 

2) My first "time spent" with Gabapentin, starting in late 2018 and running through September of 2019, was initially incredibly chaotic and not even remotely well-managed.

The medication was Rx'd (for nerve pain) by no less than four separate doctors at different/overlapping times, who each recommended different dosages. Neurologist, Neurosurgeon, and two different Pain Management Doctors.

 

With minimal and inconsistent communication between the multiple doctors, without clear unified direction, and running scared with maximum "body on fire" nerve pain, I tapered on/off abruptly, changed dose, stopped/started, and basically dosed according to random, shifting schedules for one month up/down. The results were not pretty, and involved two separate ER room visits in the span of a month.

 

* As a result of being dosed too heavily at the beginning, I ended up in the ER with shallow breathing after only three days on Gabapentin.

* At one point I awoke on the couch to a genuine clonic seizure event, with my right arm flailing around violently on its own (such that it wouldn't stop for about half a minute.)

 

In hindsight, the fact that I had such a strong reaction when Gabapentin was re-introduced to me this most recent time, just a little over six weeks ago, it should have been no surprise, and I should clearly have never taken it this second time...especially while tapering another medication. But it seems these lessons almost always come the hard way. Despite all the dosing chaos in late 2018, the fact that I eventually stabilized on a long-running (5 months) dose of 1200mg/day and then tapered off from it easily (while still taking Mirtazipine) lulled me into believing that my previous relationship with Gabapentin was fairly benign. 

 

Not sure if any of this tumultuous early dosing history has any bearing on / changes any of your perceptions of my situation, but I felt it was important to the record and to the conversation.

 

Thanks for any of your thoughts, and my wishes for recovery to everyone.

 

[Mike1972]

AUGUST 28

Had a meeting with my anxiety therapist two days ago. Spent time discussing the reality that going forward, we need to stay open to the truth that none of our stories are written yet. Also that angry self-blame (for this situation) needs to be addressed and allowed to lift, and in its place allow in acceptance and forgiveness/self-compassion.

 

Been trying everything I can think of to stay occupied, to relax, and not focus on this condition, so far with very little success. My girlfriend took away my phone for a half an hour this morning to see if I could just sit still and "be" for a while. 

 

But my mind still wrestles and fights against this current state of being vigorously....I end up jumping up and inventing things to do, walking around the house pretty regularly, as if, in my mind, "I can somehow walk away from this pain." This sounds like akathisia, but it feels more like situational distress/restlessness. (Is there a difference?)

 

Positive / Improvement:

* Hypnic jerks at bedtime remain, but continue to diminish in intensity/frequency

* Muscle twitches and original "prickly tingle" paresthesia throughout body getting less

No Change:

* Muscle weakness / cramping / pain / stiffness remains about the same

* Clumsiness in hands is about the same

* Heightened anxiety levels

Negative / Worsening:

* Burning skin sensations over entire body have been slowly getting stronger, more constant during day/night

* Hands and feet still feel "puffy" and stiff, sting and ache when they touch things.

* Areas of allyodynia (extreme sensitivity to any amount of touch or pressure) seem to be spreading around body, including hands/fingertips.

* Sleep is erratic, but mostly getting worse. Last night probably worst night yet, almost zero sleep. (WD Insomnia, plus nerve pain and mouth has now gone dry)

 

[ChessieCat]

1 hour ago, Mike1972 said:

This sounds like akathisia, but it feels more like situational distress/restlessness. (Is there a difference?)

 

akathisia-vs-restlessness-anxiety-agitation

 

[Mike1972]

Hey guys, I really need some help and advice on the current situation.

 

Have been *off* from Gabapentin for nearly three weeks. Alarmingly, over the last two or three days I have acquired increasingly shallow, nearly-fully-depressed/stopped breathing when attempting to sleep. This increasingly-shallow breathing kicks in when I start to drift off towards sleep, and progressively slows/spirals downward until the breaths are almost nonexistent in draw. At this point, my body panics and wales me back up again, gasping. The effect is to wake up having been nearly smothered. 
 

My girlfriend stayed awake and watched me try to sleep, and said it was freaky to watch. As my body relaxed, and I started to drift off, she said she watched as the breaths got shallower and shallower and eventually she couldn’t see any movement of my chest at all, until suddenly I was bolt awake gasping. We looked at the SpO2 oxygen variation tracking for my night of “sleep” and it has had huge spikes into “high variation” over the last three nights, which has never happened in sleep for me before. 

 

i know Gabapentin is implicated (And warned about by the FDA)  in shallow breathing while people are *taking it*, but has anyone got any insight into how it could be a follow-on effect in the CNS, to be unleashed several weeks after **stopping** use? I’m scared as heck and don’t know how to act on it or who to approach medically about it.

I’ve been taking one capsule of Valerian root consistently every night for the last 6 or 7 months, which I know also acts on the GABA receptors, kind of like a “benzo lite,” wondering of that is part of the picture here or if I’m just seriously experiencing some uncharted Gabapentin adverse effects. Really don’t know what to do. Can’t sleep because every time my head hits the pillow and I somehow relax, my breathing almost stops.

 

Hoping @Altostrata and the mod team and/or community has some insight into this. Thank you so much.

 

(btw, thanks @ChessieCat for the akathisia link. Good read, the distinction isn’t very clear it seems depending whom you talk to.)

[Altostrata]

You can easily see if the valerian is causing this by reducing it or stopping it.

 

Are you studying your breathing as you go to sleep? Do you think your overattention to this might be causing you to panic a little bit?

 

Are you working with a therapist?

[Mike1972]

Hi @Altostrata, 
Honestly, I know how obsessive this all sounds. But up until now I haven't been studying my breathing. Have been waking up breathless a lot of times the last three or four days, but have viewed that as simply anxiety. Had never occurred to me that the breathing itself might be "off" somehow. Yesterday I failed repeatedly to fall asleep mid-afternoon, and can see now that the "slowed/stopped breathing" thing was happening then, but at that point I didn't grasp it. It wasn't until last night after I had started to drift off, (totally OK with the occasional twitch), and after two or three failed attempts to reach sleep, that it finally "hit me" what was going on. 

 

Absolutely working with a therapist. And she's been great with my self-driven anxiety, we're working on it. Believe me, I would love (more than anyone) for this latest breathing issue to all be the result of anxious psychosomatic obsession. 

 

Valerian -- can that be stopped after lengthy use? Or is that best tapered as well? 

Would that be akin (to the destabilized CNS) to halting a benzo?

 

[Altostrata]

I don't know much about valerian. You could taper off it by quartering the tablets.

 

Have you ever suspected sleep apnea?

 

You've been off gabapentin for 20 days. Very possible whatever problems you have from going off will resolve in weeks. Please stop pushing the red button.

[Mike1972]

Checking in/September 1st

A small positive:

* Had a bit more luck getting slightly more sleep to happen last night. (Though the strangely slowed/shallow/nearly-nonexistent breathing while drifting off makes “breaking through to sleep” a bizarre exercise in trusting your body to keep breathing. Neurologist is concerned with this, he’s ordered a sleep study to investigate since there were no sleep apnea issues prior to the Gabapentin reaction/WD.)

 

Not-so-great:

* Have observed the pattern in the last week of an increasing steady-state of “anxious near-panic” starting immediately when I wake up, and persisting throughout the mornings and afternoons. Frequent “Air Hunger” breathing has set in, and lots of pacing the house. Evenings seem to calm this down (but still leave it at pretty high levels.) It’s not until shortly before bedtime that this anxiety drops to a point that I almost feel like “the actual me” for perhaps an hour, able to breathe normally and laugh/kid a bit about things. But apart from that one hour, the rest of the day is brutal, trapped in the discomfort of a frantically-amped racing brain and body. Starting to feel fearfully claustrophobic indoors if windows aren’t opened up for fresh air. Nothing seems to help to calm down, other than perhaps focusing on an intellectual “task” of some sort for several minutes. “Get in the frontal lobe, get out of the body.”

 

* Other physical symptoms largely unchanged (overstimulated/hyper-sensitized burning nerves and cramped/painful/unresponsive muscles)

[Mike1972]

So this is more for the record/continued account than than anything else, but this update is worthwhile I think.....

 

Main bullet point:

The neurologically-damaging effects of the bizarre adverse reaction to the Gabapentin have continued to hit harder and in progressively stranger ways. 

 

I hurriedly met with a Sleep Doctor this week, and we did a sleep study to begin to understand the bizarre “completely lost automatic breathing” that happens immediately upon relaxing, and that also happens right before (and usually prevents) sleep. Prior to the visit, I had recorded a set of data of my blood-oxygen levels for my night of sleep, and when the Doctor saw the plummeting oxygen graphs (desaturating to the low 70’s) and staggeringly poor efforts of the body to regain breath, he immediately pronounced it with high certainty to be classic Central Sleep Hypoventilation - which means that the central brain has now, for some reason, suddenly lost the ability to perform automatic breathing correctly. Indicative of a sudden breakdown in neurotransmitter signaling and deep-brain function. This has further manifested in the inability of the body to perform “automatic breathing” when I am awake as well....such that I have to continually do “manual breathing” to maintain respiration.
 

Due to the “halted automatic breathing” issue, I have had two instances in this past week where sleep became completely impossible (automatic breathing spins down and stops when you relax, and you begin to suffocate before you can drop off to sleep), and I was forced to stay awake for nearly two days (40 hours) in order to finally become dead tired enough that I would collapse into sleep immediately for 4 or 5 hours, only to be unable to sleep again the next night. Rinse and repeat.
 

Muscle groups in parts of my body have become progressively partially and completely paralyzed, including development of drop-foot on right side. All skin on my body, head-to-toe, is now hypersensitized and averse to touch of any kind, including head, ears, tongue, and genitalia. Skin burns and is pressure-sensitive to touch, many parts of body feel heavily bruised inside. Mouth has gone completely dry, parts of body are not sweating any more, autonomic issues. Major muscle clumsiness and weakness continue to spread. Entire nerve network has seemingly destabilized at a core basic functional level.

Anecdotally, have spent a lot of time on the Facebook Gabapentin/Lyrica groups now, and am finding that essentially all of the symptoms I’m experiencing (including sudden lost ability to breathe automatically, as well as diminished lung performance in general) have been reported by many others, both on the med and in withdrawal. The damage implied by some of these symptoms is considerable and sobering.

 

Withdrawal in the sense of emotional/cognitive effects is present in the form of heightened panic and anxiety, but I believe now that most of that (at this point) is attributable to the collection of physical symptoms that continue to unfold.

[Altostrata]

7 hours ago, Mike1972 said:

Withdrawal in the sense of emotional/cognitive effects is present in the form of heightened panic and anxiety, but I believe now that most of that (at this point) is attributable to the collection of physical symptoms that continue to unfold.

 

On 8/21/2020 at 4:14 PM, Altostrata said:

You may want to work with a psychotherapist to learn ways to manage the health anxiety. Health anxiety, hypochondria, and obsession with symptoms

 

Please consider whether you are adding to the distress with your own habit of health anxiety, overanalyzing, and perceiving the situation as the worst possible. Whatever emotional reaction you have to this situation is not a withdrawal symptom and is under your control.

 

What effect do you feel from the mirtazapine? Valerian root? Melatonin?

 

Was pursuing better sleep your original reason for taking psychiatric drugs?

 

On 8/18/2020 at 2:04 PM, Altostrata said:

 

What's going on is that your sensitized nervous system wants you on alert and is shaking you awake when you're dropping off. This kind of alerting is common in withdrawal. When you got it from gabapentin, it was a paradoxical reaction. This is not a movement disorder.

 

What you might do is play soft music while you're sleeping. Hearing this signals to your nervous system that you haven't gone unconscious and no reason to push the panic button. See Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

Another option to relieve withdrawal symptoms is to reinstate perhaps 1mg liquid gabapentin, stabilize, and taper off by tiny amounts later. These very low dose reinstatements can be effective without triggering adverse reactions.

 

 

Have you pursued any low-tech remedies, such as playing soft music while you're sleeping? How much daily exercise do you get?

 

Have you considered the simple remedy of reinstating a little gabapentin, or are you dedicated to researching and pursuing more complicated diagnoses and treatments?

 

[Mike1972]

Hi Alto,

I really do appreciate your reply. Thinking I should have perhaps not posted the above update in my early-morning distressed state, it (at minimum) invited a measured dissection as you’ve given. 

 

I’ve tried many of the non-alerting efforts that you’d suggested. Played low-volume ambient music for a while, and then actually found that what worked well for me (for a time) was to play a foreign-language audiobook (in a language I am not fluent in) so that my brain heard only the sound of human voices, but assigned no meaning to them. That technique worked to diminishing the hypnic jerks considerably. Daily exercise was pretty solid for me up until about a week ago, when several isolated muscles in my calves locked up (and one went numb.) Up until that point I was making a point of bike riding and walks, as well as lots of stretching. Somehow now the body isn’t cooperating however, ankles stiff and dramatically losing muscular range of motion. Very frustrating as “get out there and run!” exercise has always been my go-to outlet for stress reduction.

 

I was put on psychiatric drugs two years ago when I was in the midst of a traumatizing head-to-toe toxic and painful nerve-damage medical situation, that also created immense brain-chemistry-altered anxiety and insomnia. I resisted the medications, on principle, to the last, but the reality was that I was rendered nearly fully nonfunctional with doom-stricken panic, and I finally consented to Lexapro, which then had Mirtazipine added to it “to boost its effectiveness” as the Psychiatrist said. The Gabapentin (first course, back in 2018) was administered for the neuropathic pain. I was transitioned to Clonazepam by the psychiatrist, to get me off the Ativan that my GP had ham-fistedly prescribed to help me sleep. 
 

Valerian and Melatonin were used to help reestablish sleeping patterns after I had cold-turkey withdrawn/WD’d and then reinstated Mirtazipine back in October, and I continued to take them as I made my taper going forward. I had them found the Valerian made sleep deeper and more rich/full, and the Melatonin made sleep have more consistent length of time. Nowadays I have no concept of any measure of sleep of course, as it is nearly impossible to reach it.

 

I do agree that I am absolutely an OCD analyst of most things (engineer/product designer, it works well great for that endeavor) and for my anxiety I totally do need to lessen my obsession with many of my own health concerns. But sometimes...a perceived issue ends up to be an actual issue, right?
 

Side note:

This has been a new learning experience for me to learn that psychiatric/psychoactive drug withdrawal (or adverse effects) can have major physical nerve/muscle impact, not just cognitive/emotional. I’m showing my green horns.
 

But whatever is the ultimate physical reality of my current state, you are right that my regular instinctive acts of overanalysis do not help with anxiety. Finding balance in dwelling on symptoms vs acknowledging them is an art my mind hasn’t mastered yet. I find that in the moment of distress about a symptom, I am sometimes calmed (temporarily) by digging into it, DEEPLY, as a research project, such that I can “distance myself” from my own current physical reality....and instead view it all as an abstract conceptual puzzle to be solved. (Which of course often can’t be solved....)

 

Forgive me Alto, but at four weeks now off from Gabapentin (to which there was a strong and immediate adverse reaction), I have been continuing to “not tamper” with any of the medications. I had gotten the sense in our most recent communications that it was perhaps best to not change anything, see if possiblly-WD symptoms didn’t resolve in a few more weeks, and to not continue “to push the big red button,” hehe.

And overall I’ve quite honestly been too fearfully paralyzed to tinker with anything, mostly grasping the takeaway that it’s best to keep things simple and let healing continue.
 

But with continued symptom expansion, I would please welcome any perspective now, as to whether low-dose GBP reinstatement at this point (one month out) is wise to now give some consideration to. I am honestly still naive as hell about “when to reevaluate current strategy,” and will own up readily to the fact that I had assumed I was well past the point of being able to possibly do a low dose GBP reinstatement.
 

Of course prefer that as a possible “course corrector” vs any distressing diagnoses / complicated medical treatments, any day. 
 

Thanks for the candid talk Alto.

[Altostrata]

If reinstating gabapentin makes you too anxious, don't do it. You'll have to learn to be patient and let your body re-regulate without.

 

2 hours ago, Mike1972 said:

Played low-volume ambient music for a while, and then actually found that what worked well for me (for a time) was to play a foreign-language audiobook (in a language I am not fluent in) so that my brain heard only the sound of human voices, but assigned no meaning to them. That technique worked to diminishing the hypnic jerks considerably. Daily exercise was pretty solid for me up until about a week ago, when several isolated muscles in my calves locked up (and one went numb.) Up until that point I was making a point of bike riding and walks, as well as lots of stretching. Somehow now the body isn’t cooperating however, ankles stiff and dramatically losing muscular range of motion. Very frustrating as “get out there and run!” exercise has always been my go-to outlet for stress reduction.

 

It would make sense for you to continue what's working and stop worrying about hurrying your recovery along. When we say it's slow, we mean it's slow.

 

It seems you saw improvement until a week ago. Perhaps you over-exerted and would benefit from milder exercise.

 

Please pause and apply common sense when you hit a rough spot. We see thousands of people here with withdrawal syndrome. You will have ups and downs. If your legs cramp from exercise, do less, or do more stretching. If the language tape stops working, try music.

[Mike1972]

Hi again Alto,

Appreciate the comment about reinstatement possibly making m me anxious. At this point, doing anything (or doing nothing) both make me stress, so I’m still open to trying it.

 

Given that Gabapentin has a short half-life and is usually dosed three times a day to avoid interdose withdrawals.....when one is suggested to try 1mg to reinstate, would that be actually a total of 3mg/day (3 separate doses of 1mg during the day)? 
 

Or would one truly want to stick to a total of 1mg for the day. Low dose as possible. 1/3mg given three times a day...?

 

I’ll re-read the Gabapentin titration posts.

[ChessieCat]

2 hours ago, Mike1972 said:

a total of 1mg for the day. Low dose as possible. 1/3mg given three times a day

 

Yes, 1mg per day total.

[Mike1972]

Update.

So I decided *not* to attempt reinstating the Gabapentin, for better or for worse. Largely because physical symptoms were unfolding so fast and so strong, it seemed like a good chance of ending up in the hospital. (Where there would be zero ability to maintain the 3x/day dose schedule of the titrated Gabapentin reinstatement.)

 

Anxiety, panic, depression, and sense of “joylessness” are the new norm. It’s awful. Lots of dark places that the mind goes to now, I long for another pill to “fix” this mess but can’t imagine there is one. And yet my family and friends push me to go see another psychiatrist and “see what they can do for you.”

 

The physical symptoms/effects triggered by this on/off round of Gabapentin are still nearly impossible to grasp. Already mentioned previously the sudden appearance (and twice-tested-now diagnosis) of a Central Sleep Apnea, which has doctors entirely flummoxed to see (in someone who hasn’t had a stroke or other neuromuscular disorder,) and now muscular Lung inhale/exhale muscle strength has declined hugely (nearly 50%) in tests done by Pulmonology last week. I’m constantly short of breath, but not in the classic “air hunger” anxiety type of breathless....in my case, it’s as if the lungs don’t have the strength to expand. Tried to go for a bike ride and couldn’t go for even half a minute of casually pedaling before had to stop and furiously try to catch my breath. I’m losing my breath just drinking a glass of water, or eating, or talking. It feels 100% like I’ve been drowned and can’t get the lungs to expand, let alone draw in the air it feels like I need.
 

Lower legs have actually gone entirely numb in large areas. Top of left foot has gone dead numb. Joints are all stiff and hugely painful. And still muscles all behave stiffly/sluggishly and seemingly pulled tight and “out of alignment” with what they should be doing, if that makes any sense. I’ve read about Dyskinesia/Dystonia, it’s not either of those but adjacent muscles seem to just be “fighting each other” when I go to move,

as if they’re stupidly not fully aware of each other and can’t coordinate smoothly.

 

Nerve pain off the charts throughout the body, and has modified to feel like its likely now become a central pain sensitization. I know how crazy this all sounds, but my skin from head to toe just feels....weird and not good. Diminished sense of touch and lots of electrical/hot burning. When my skin is wet in the shower it’s at its worst, where rubbing the skin to wash feels like painfully rubbing your hands on a rubber chalkboard. Both feet and ankles feel like they are made of iron inside, hugely painful to touch them to each other.
 

Some weird seemingly-autonomic stuff related to moisture has happened too, my mouth has suddenly gone completely dry in the last couple weeks (I used to drool all over my pillow at night and now the mouth is totally the Sahara only two minutes after I take a drink of water. Sweat functions throughout my body seem to have become largely nonexistent in many areas like arms. And my eyes have dried out! Truly weird. As a result my vision has gotten blurry and my eyeglass prescription suddenly doesn’t work for me anymore. 

Unbearable. All around.

Tons of medical tests, no results of any kind of course, except for the crazy Central Apnea and daytime breathing issues. (Deep Brain involvement on both, the Md’s say.)

 

With one exception, none of my Doctors can believe that this was unleashed by a Gabapentin reaction. And none of them versed in how to proceed with a nervous system in free-fall....most suggest more meds but it seems even they recognize that this is a case where it needs to be very carefully handled.
 

And still new symptoms pile up each day.

Its as if my body has been thoroughly reprogrammed top-to-bottom to tear itself apart. Do people recover meaningfully from such levels of CNS disarray?

[normalhuman]

On 9/25/2020 at 7:18 PM, Mike1972 said:

Update.

So I decided *not* to attempt reinstating the Gabapentin, for better or for worse. Largely because physical symptoms were unfolding so fast and so strong, it seemed like a good chance of ending up in the hospital. (Where there would be zero ability to maintain the 3x/day dose schedule of the titrated Gabapentin reinstatement.)

 

Anxiety, panic, depression, and sense of “joylessness” are the new norm. It’s awful. Lots of dark places that the mind goes to now, I long for another pill to “fix” this mess but can’t imagine there is one. And yet my family and friends push me to go see another psychiatrist and “see what they can do for you.”

 

The physical symptoms/effects triggered by this on/off round of Gabapentin are still nearly impossible to grasp. Already mentioned previously the sudden appearance (and twice-tested-now diagnosis) of a Central Sleep Apnea, which has doctors entirely flummoxed to see (in someone who hasn’t had a stroke or other neuromuscular disorder,) and now muscular Lung inhale/exhale muscle strength has declined hugely (nearly 50%) in tests done by Pulmonology last week. I’m constantly short of breath, but not in the classic “air hunger” anxiety type of breathless....in my case, it’s as if the lungs don’t have the strength to expand. Tried to go for a bike ride and couldn’t go for even half a minute of casually pedaling before had to stop and furiously try to catch my breath. I’m losing my breath just drinking a glass of water, or eating, or talking. It feels 100% like I’ve been drowned and can’t get the lungs to expand, let alone draw in the air it feels like I need.
 

Lower legs have actually gone entirely numb in large areas. Top of left foot has gone dead numb. Joints are all stiff and hugely painful. And still muscles all behave stiffly/sluggishly and seemingly pulled tight and “out of alignment” with what they should be doing, if that makes any sense. I’ve read about Dyskinesia/Dystonia, it’s not either of those but adjacent muscles seem to just be “fighting each other” when I go to move,

as if they’re stupidly not fully aware of each other and can’t coordinate smoothly.

 

Nerve pain off the charts throughout the body, and has modified to feel like its likely now become a central pain sensitization. I know how crazy this all sounds, but my skin from head to toe just feels....weird and not good. Diminished sense of touch and lots of electrical/hot burning. When my skin is wet in the shower it’s at its worst, where rubbing the skin to wash feels like painfully rubbing your hands on a rubber chalkboard. Both feet and ankles feel like they are made of iron inside, hugely painful to touch them to each other.
 

Some weird seemingly-autonomic stuff related to moisture has happened too, my mouth has suddenly gone completely dry in the last couple weeks (I used to drool all over my pillow at night and now the mouth is totally the Sahara only two minutes after I take a drink of water. Sweat functions throughout my body seem to have become largely nonexistent in many areas like arms. And my eyes have dried out! Truly weird. As a result my vision has gotten blurry and my eyeglass prescription suddenly doesn’t work for me anymore. 

Unbearable. All around.

Tons of medical tests, no results of any kind of course, except for the crazy Central Apnea and daytime breathing issues. (Deep Brain involvement on both, the Md’s say.)

 

With one exception, none of my Doctors can believe that this was unleashed by a Gabapentin reaction. And none of them versed in how to proceed with a nervous system in free-fall....most suggest more meds but it seems even they recognize that this is a case where it needs to be very carefully handled.
 

And still new symptoms pile up each day.

Its as if my body has been thoroughly reprogrammed top-to-bottom to tear itself apart. Do people recover meaningfully from such levels of CNS disarray?

Hi Mike,

I'm a new member so I will soon update my signature information but I was curious since it's now Feb 2021 how you're doing.  I have similar withdrawal pain, parasthesia/ dysesthesia after a 9 month taper of Prozac. Thank you!

[MrMiyagi]

Hello Mike how are you ?