Mike1972: tapering mirtazapine and gabapentin

[ChessieCat]

Thank you.  If you can't find an easy solution just keep doing it the way you are.  We would prefer you to provide the notes in larger font than not doing them at all. ☺️

[Mike1972]

3 hours ago, ChessieCat said:

Thank you.  If you can't find an easy solution just keep doing it the way you are.  We would prefer you to provide the notes in larger font than not doing them at all. ☺️

Thank you @ChessieCat!! 😊

 

August 14

9am time to get up
9:10 am - muscles sore head to toe.
9:30 am - breakfast 
10:00am - 12noon - office work (medical paperwork) and phone calls. Feel like I barely have the pain endurance/stamina and cognitive energy to do it.
12:00 lunch
2:00 decide to skip Magnesium today, to see if it is having any effect on overnight burning/tingling skin sensations.
3:00-4:00pm - go to doctor’s office for paperwork.
4:30 - quick trip to grocery store
5:00pm - home and beyond exhausted. Super high levels of fatigue and muscle pain.
6:00pm - lie down on couch. Arms aren’t tingling or twitching!
6:30-8 pm NAP! Holy crap. Awesome.
8:15 late dinner. Arms and hand muscles super tired and sore. But good dinner.
9:00 pm - try to relax again.
9:30 pm - head to bed
10:30pm - 1 mg Mirtazipine, 450 mg Valerian, 3mg Melatonin
10:30 lie down to sleep
11:00pm - 4:15am sleep. Arms don’t burn or tingle!
4:15 - 8:30 am - restless / awake / anxious / painful muscles and hands/feet, arms start to tingle/burn when I get anxious.
8:30-9:00am chat with girlfriend in bed
9:00 - time to get up 

[Mike1972]

Hey @ChessieCat, @Altostrata, @Gridley, @composter -

 

Is there any chance of changing the name of this thread of mine? And adding the “Gabapentin” (or “Neurontin”) tag to it (and maybe also “kindled”?)

 

While this thread was started initially to ask for help with my Mirtazipine withdrawal, my latest chapters in this drug saga seem to have been really kicked into high gear by the recent short-course addition of Gabapentin, which I fear I have very possibly been kindled in the process by. 
 

So I’m wondering if the thread might be better named something like “ Then: Mirtazipine WD....Now: possibly Gabapentin kindling?” (Or something to that effect?)

 

Just curious. My story seems like it took an abrupt right-hand turn (symptoms going from simple localized neck/nerve pain to a fully-systemic condition) when I was given this most recent Gabapentin script. I’m quite honestly terrified that I’ve dangerously kindled, what with my history of the initial neurotoxic vitamin-overdose exposure, and then multiple poorly-managed polydrugged on/off medications to address nerve pain.

 

Overnight the body-wide tingling/burning sensations are getting stronger.
 

Really scared, don’t feel like I have many options left. (Been on so many meds already....doctors wouldn’t understand nuance of kindling (or believe in it) and would probably push me into a course of something like Lyrica, which I’m certain with my two-year history now of on/off GABA drugs many times would be devastatingly bad move for me.) My Neurologist tried to convince me to go onto Klonopin only two days after tapering off the Gabapentin. (I declined.) 

 

But what could I even try at this point?

* Mirtazipine I probably tapered down too fast after the initial CT/WD and reinstatement. 
* I already have a tumultuous history with Gabapentin. 
* I was on benzos for about six months, first Ativan and then a transition to Klonopin and then successful taper.

* I was on Lexapro for a while too (all of this in my signature / drug history below I believe)

 

Really don’t know which meds are even left for me to try, fully believe I’ve become hypersensitized somehow to psych meds now and Gabapentin was the last straw. But you know Doctors will want to push more meds as the solution. 

 

Hoping desperately for a window of light / enlightenment.

 

Mike1972

[Altostrata]

I changed the topic title, but ordinarily we don't do this, everybody's topic titles would be continually changing.

 

It seems your symptoms are fluctuating, sometimes clearing up. That's a good sign.

 

Overall, do you feel better, worse, or the same since you went off gabapentin?

 

FYI

 

[Mike1972]

Hi @Altostrata,

 

In some symptoms I feel better than when I was on Gabapentin, and in some I don't.

 

1) Improvements:

1) There's now a good bit less of the strong muscle spasms (strong and visible twitch-twitch-twitch style) than when I was on Gabapentin. 

(Not sure if some of that is due to trying very hard to not overwork my muscles, however? Only time will tell.)

2) Far less brain fog! Unquestionably. I was a forgetful and unfocused mess on Gabapentin.

3) Possibly a *little* less sense of crushing fatigue

4) Too soon to tell if it's an anomaly, but I had a good night's sleep last night (previous week after ending Gabapentin has been progressively terrible however)

 

2) No change (or no very noticeable change):

1) Muscle tightness/soreness/tendency to get cramps after using them - it's still pretty bad. 

2) Feeling of muscle weakness

3) Feeling of pain in joints - probably still about the same (none of these symptoms existed before I started the Gabapentin!)

 

3) Still continuing to get slightly worse:

1) Sensation of warm/tingling burning (all over body....it comes and goes, seemingly depending on time of day, stress levels, amount of exertion)

*Somehow it didn't show up last night, however, and I got a decent night's sleep. First good night of sleep in a week or more, I would say. It's back again this morning, however.

2) Forearm / Calve / Hand pain and fatigue in particular 

3) Frequency of Anxiety (due to relentless physical symptoms, or due to psychochemical/CNS state?)

 

I'm wondering --- is it possible that a good bit of what I'm experiencing is also due to some late-to-arrive Mirtazipine withdrawal? (Or an exacerbation of such, or an inherently still unstable CNS, as "stoked" by Gabapentin?)

My last two drops with Mirtazipine came within two weeks of each other, and percentage-wise they were big. (2.0mg >> 1.5mg, and then 1.5mg >> 1.0mg.).

The last of those two drops was done on June 10th, a good month before beginning Gabapentin (Gabapentin started July 16th.)

Symptoms of muscle tension, joint aches, and eventual burning began around 5 or 6 days into Gabapentin.

 

August 16

 

9 am - time to get up

9 am - noticed that forearms and lower legs are EXTREMELY tight and sore. Deep aching pain into the bones, including the hands and feet.

9:15 - Breakfast

10 am - Since I'm exhausted as heck, plan to spend day doing as little as possible, trying to relax if possible

11 am - Write out list of things I need to accomplish tomorrow (so I won't obsess over them as much today)

12 noon - lunch /snack

1 pm - Lie on couch, arms hurting a LOT. Put socks on them to try to cover up the burning ache. Does not work.

2 pm - 3pm - Anxious, lots of pacing. keep trying to lie still but mind races, feel need to be up and "doing something"

3 pm - 4:30pm - lie down to repeatedly attempt nap. Arms begin to tingle/burn (and want to be "moved") as soon as I start to almost fall asleep. 

5pm - 7pm try again to lie down and relax in living room chairs/couch, but am incredibly restless.

7:30 Dinner

8:30 pm - noticed burning sensation on upper legs.

9 pm - Fret about symptoms quite a bit. Somehow convince myself this isn't withdrawal, but in fact must be me simply having the return of painful neuropathy from my B6 vitamin overdose issues two years ago.

10 pm - 1 mg Mirtazipine, 450mg Valerian, 3mg Melatonin

10-10:30pm read in bed

10:30 lights out

10:45 - 6:45am -- Wow -- I largely slept!!! Minimal burning/tingling overnight, almost none. Hands and feet are sore as heck, however.

6:45 - 8:15am - Rest in bed.

8:25 am - time to get up

 

Mike1972

 

[Altostrata]

Yes, it's likely your symptoms are from mirtazapine withdrawal and sensitization from going on and off drugs and cold turkey prior to mirtazapine taper this last time around.

 

It seems your sleep is improving, which is a sign you are stabilizing.

[Mike1972]

3 hours ago, Altostrata said:

Yes, it's likely your symptoms are from mirtazapine withdrawal and sensitization from going on and off drugs and cold turkey prior to mirtazapine taper this last time around.

 

It seems your sleep is improving, which is a sign you are stabilizing.

 

Ok so I have a curiosity: 

In the instances of individuals who have likely "sensitized" their CNS, how advisable is the addition of a sedative to calm that down?

 

I ask because:
When these symptoms all leapt into existence over the last few weeks, my Neurologist did extensive blood testing for likely/possible neurological/neuromuscular conditions that might be a culprit - these all came back negative. (There are still a number of conditions that there aren't blood tests for which are still hypothetically possible, such as CIPD or MS, but he's discounting those as unlikely for some reason (his professional opinion, not any further testing....) --

 

But -

His assessment was that all of my weakness/muscle pain/nerve pain symptoms are the result of "an anxious individual who has had a unfortunate experience with Gabapentin" - 

AND - 

He wanted me to start immediately on 0.5mg of Klonopin! (This was only *two days* after I had finished tapering off from Gabapentin!)

 

I politely declined. 

But the Neurologist and I speak again tomorrow afternoon (another phone appointment) and I think he will bring it up again.

 

Am I wrong for feeling that Klonopin is a bad idea?

It seems intuitively like a terrible thing to dump a drug in there again right away after another drug (gabapentin) seems to have stirred me up.

Even a sedative.

(And maybe especially bad, a sedative.....and maybe doubly-doubly-bad, a sedative (Klonopin) that I've already been on before, and did a fairly fast (two month) taper off from.

 

I'll be honest, I'd love a quick "fix" for this condition.....

....but I don't feel like there exists such a wise fix in the Benzo cabinet. 

 

[Altostrata]

You've had these drug-related symptoms for less than a month. What we see is they very gradually go away over a number of months.

 

1 hour ago, Mike1972 said:

He wanted me to start immediately on 0.5mg of Klonopin! (This was only *two days* after I had finished tapering off from Gabapentin!)

 

Because your system is sensitized, you may have a paradoxical reaction to even a moderate dose of clonazepam. Taken regularly, physiological dependency on clonazepam can occur within a few weeks. Then you will have a different drug problem to deal with. Eventually, you will have to taper clonazepam, probably with difficulties similar to that you had with tapering gabapentin or worse.

[Mike1972]

1 hour ago, Altostrata said:

You've had these drug-related symptoms for less than a month. What we see is they very gradually go away over a number of months.

 

 

Because your system is sensitized, you may have a paradoxical reaction to even a moderate dose of clonazepam. Taken regularly, physiological dependency on clonazepam can occur within a few weeks. Then you will have a different drug problem to deal with. Eventually, you will have to taper clonazepam, probably with difficulties similar to that you had with tapering gabapentin or worse.

 
Thank you for this @Altostrata !

This perspective of yours on the clonazepam just seems to be the only safe one to draw.

And it seems the only logical conclusion to draw, that the risk is quite high, if one is to look simply at my drug/case history.....if only my Neurologist (and most of my other Doctors!) would pay attention to that . )

 

On another, actually-Doctor-affirming note -

I spoke to my Neurosurgeon today (he did my neck surgery two years ago, and saw me through my worst with the Vitamin B6 toxicity, so he knows my history).

I told him about the extreme body-wide neurological / neuromuscular symptoms that had exploded when I started Gabapentin, and to his credit he *immediately* assumed it to be a Gabapentin-related adverse drug reaction, and was very sorry I had to go through it. 

 

I'm not sure how accurate his understanding of a possible healing timeline is, but he stated that it takes around 30 days to "get the Gabapentin properly out of your system" and to figure a good 60-90 days for the CNS to build/repair/re-regulate its receptors. I hope that his projection of healing from this proves to be true/real.

 

He then kidded with me and wanted to know if I had been taking Vitamin B6 again. (arghhhh.....)

 

In the meantime -

To keep myself occupied....since my aching/cramping/weak muscles won't let me do much walking around or picking anything up.....I'm trying to sit and read as much as I can about similarities / differences between Gabapentin and Mirtazipine, in terms of which receptors and brain chemicals they influence/agonize/antagonize. I'm finding lots of threads of overlap in the areas of GABA and Glutamate, but clearly just beginning to peel the onion with this.

 

I keep digging, I suppose hoping to find an "Ah-ha!" connection that indicates why I was potentially "primed" to have an extreme reaction like this.

(And to hopefully reassure myself that it can be healed from.....)

 

Thank you again so much Altostrata. 

(and to the rest of you knowledgeable and seemingly-tireless compassionate people.)

 

[Altostrata]

7 hours ago, Mike1972 said:

he stated that it takes around 30 days to "get the Gabapentin properly out of your system"

 

This has nothing to do with withdrawal.

 

7 hours ago, Mike1972 said:

to figure a good 60-90 days for the CNS to build/repair/re-regulate its receptors.

 

This may be true.

 

We haven't seen any way to understand or predict symptom patterns relative to receptors or brain chemicals. All the psychotropics seem to share many similar symptoms. The ones that appear to relieve pain seem to have a withdrawal-related rebound of increased pain and stiffness. That is part of withdrawal syndrome.

[Mike1972]

Thanks for the thoughts @Altostrata.

 

I was so briefly hopeful yesterday that maybe this body-wide set of pain and neuromuscular symptoms is something that I can recover from, but I find today I’m not so sure. 
 

(I believe that) Gabapentin has been implicated in movement disorders (Tardive Dyskinesia, Akathisia) and I’m very worried about the fact that 9 days after I’ve tapered off this latest and  “relatively short” (22 days)  course of Gabapentin, I’m still very much dealing with night-time hypnic jerks and daytime subtly-felt jerky movements.

 

After a good night’s sleep the night before, last night was abysmal. Kept awake by constant weird muscle tension that would flare up JUST as I would start to relax and drift off to sleep....and muscle jerks in shoulders, hips, arms, legs that would happen just as about to drift off too. I’d had this experience with Gabapentin the first time I took it as well, and was assured by the doctor that “that’s common.”

 

Somehow over time that symptom had gone away while taking Gabapentin the first time around two years ago (and over the subsequent year I was on it), but I was also on three other meds including a Benzo for part of that time, I wonder if those meds didn’t “temper out” that muscle twitching symptom. Those are meds I don’t have in me now. So....you can imagine my concern when these neuromuscular symptoms linger after the Gabapentin is out of the system.

 

But I note that you’re directly and intentionally referring to this as withdrawal. Is that how I ought to realistically be viewing my Gabapentin-related symptoms? Even thought it was a “short” course this time, and the symptoms I’m experiencing are identical to the symptoms that leapt into existence while I was *on* the Gabapentin?
 

I must admit I’ve been hopefully (naively?) viewing this last 9 days, post-Gabapentin, as a window in which I would hopefully see these distressing and painful “adverse reaction effects”’ of Gabapentin start to fall away, versus seeing them stick around.....and having to look at this as a potentially new and expanding adventure in possibly lengthy withdrawal (with these same *adverse reaction symptoms* now being attributed to being in withdrawal.)

 

I guess I’m not sure quite how to view it  Terrified that it’s not withdrawal, but that I’ve simply permanently ruined key elements of my pain and muscle control wiring circuits with this disastrous round of Gabapentin. 
 

August 17

8:25am - get up
8:30am - quick snack
8:35-9:00am - phone calls and emails to HR. Tired painful hands/arms and notable burning sensation on skin over much of body.
9:00am - computer work 
9:30am - proper breakfast. Hands and legs weak and painful as heck.
10:00-10:15am - phone calls with my employers HR department 
10:30 - notable uncomfortable sensation of skin burning body and head 
11-12 noon - try to relax. Sense of strong rising anxiety. Breathing is anxious.
12 noon - lunch
1pm - sense of strong anxiousness
2pm - feels noticeably painful to touch things with my fingers, neuropathy-like
3pm - Come across a funny article online that makes me really laugh deeply for the first time in weeks. It feels amazing.
4pm - more phone calls with doctors offices
5 pm - try to relax on couch. Almost nap.
6 pm-7pm - intensely researching things relative to my current condition on internet
7:00pm - sit in recliner and read a book. I’m surprised to find that my mood is good and that I’m actually really truly enjoying the book.
7:30pm - dinner. I really enjoy it.
8:00pm - help with dishes
8:15pm-9pm - watching some reality TV with girlfriend. Anxiety and pain makes it not easy to stay with it, but I’m doing pretty good / laughing a bit with it.
9:30 try to wind down.
10:00-11:00pm - read in bed
11:00pm - 1 mg Mirtazipine, 450mg Valerian toot, 3mg melatonin 
11:10 pm - lights out
11:20 sense of muscle tension in arms/legs. Feels like light quiver in muscles that you think you have relaxed.
11:30 - jolted awake just as I’m falling asleep by “hypnic muscle jerks” in shoulder muscles / arms / hips / legs - occur JUST as you’re about to drift off.
11:45pm - 6am: terrible broken sleep. Can’t drift off properly due to “just as you’re drifting off” muscle jerks. Get very little light sleep, almost zero deep sleep. Constant tossing/turning trying to find position where it won’t happen. 
7am - 8am - restless and wide awake.
8:15 am - time to get up.
 

[Altostrata]

7 hours ago, Mike1972 said:

Kept awake by constant weird muscle tension that would flare up JUST as I would start to relax and drift off to sleep....and muscle jerks in shoulders, hips, arms, legs that would happen just as about to drift off too. I’d had this experience with Gabapentin the first time I took it as well, and was assured by the doctor that “that’s common.”

 

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.

 

Edited August 18, 2020 by ChessieCat
added link

[ChessieCat]

1 hour ago, Altostrata said:

See Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

I added the link for you.

[Mike1972]

Thanks @Altostrata and @ChessieCat,

 

Appreciate very much the advice/tips on how to combat "alerting" when attempting to drift off to sleep.

I'd had some success a week or so ago by listening to *very quiet* classical music on earbuds when trying to drift off to sleep, it worked for the first hour (I drifted off then woke back up again in an hour).....and then I was somehow able to take off the headphones and drift off to sleep without the music. (Symptoms are stronger now, not sure I could do it without the music.)

May try again tonight.

 

But hey --- so I've been reading up (here on SA) about "Alerting".....

.....and what sounds like is a potentially a similar-to-PAWS-type CNS situation for me? 

(that I've created for myself with this latest adverse reaction to Gabapentin (while already destabilized with a Mirtazipine CT/WD/reinstatement and a too-fast taper....)

 

I ask specifically about a PAWS-type recovery for me, after having read the following SA thread on adverse drug reactions:

(Which mentions a PAWS-type recovery for those with immediate adverse reactions to an antidepressant.....)

 

 

And....based on that.....

I have the following question -- Is Lamictal (Iamotrigine) a possible option for me to look into?

 

(This SA thread caught my attention as well today.)

 

 

 

As mentioned previously, my Neurologist is advocating clonazepam (which I am 99.9999% sure and agree with you is a bad idea). I need to have other options, I think, to discuss with him.

And tomorrow I meet with my psychiatrist, to see what he might offer.

 

I was hoping to see if Lamictal was something I might bring up / discuss with the neurologist or psychiatrist if you think that might be applicable in my situation.

 

Thank you again so very much.

Desperate for physical symptom reduction in any amount. 

 

(Ironically....for whatever this situation is that I'm in.......I don't feel the tremendously acute sense of mental anguish/anxiety that I would expect I would feel right now, apart from that which is generated by not being able to sleep (or ever get away from the burning nerve pain / twitching and jerking muscles when I try to relax.) 

 

Mike 1972

[Altostrata]

Since you stabilized on mirtazapine in 2019, you don't have PAWS from that. Your current symptoms are due to nervous system sensitivity from your going on and off drugs repeatedly. Going off gabapentin has caused a flare in symptoms.

 

29 minutes ago, Mike1972 said:

I was hoping to see if Lamictal was something I might bring up / discuss with the neurologist or psychiatrist if you think that might be applicable in my situation.

 

Your recovery from going off gabapentin is proceeding normally for withdrawal. We know it's grueling. That's why we tell people not to make any big changes.

 

We're not much for recommending additional drugs under these circumstances.

 

[Mike1972]

Hi @Altostrata,

 

Thank you for your consistent messaging about what you see my situation as being (Gabapentin withdrawal, vs. PAWS.)

 

To hopefully clarify, I haven’t seen this as PAWS, but as having an adverse reaction component that implies a possible *PAWS-like* recovery arc.

 

So my apologies, but I feel like I need to ask the question, again, though -  how is my situation not viewable (initially) and somehow classifiable as an **adverse reaction** to the Gabapentin? (With a likely/logical component of withdrawal *also* now as well)?
 

I ask this because I rapidly developed all of my current symptoms while I was *on* the Gabapentin (symptoms began and ramped up within 6 days of starting the Gabapentin.) 
 

True, these same symptoms remained throughout the taper off from the Gabapentin, and have (some of them) increased in intensity for in the 9 days since the conclusion of the taper, so I can see how *that* portion of the timeline suggest withdrawal.

But it’s the timing of the *origination* of symptoms (shortly after I began Gabapentin) that seems like this kicked off with an initial adverse reaction. 
 

I only asked about a PAWS-type recovery, since I am concerned that since my symptoms unfolded at the *inception* of my Gabapentin course, I’ve been viewing this as being first, an adverse reaction of some sort. And the SA thread on recovery timelines for adverse reactions indicates a PAWS-type lengthy recovery.

My most humble apologies if I’m still somehow not grasping the proper perspective on this.....hopefully you can see why I am still pursuing clarification of “adverse reaction” vs “withdrawal” (based on the timeline of when symptoms began.)

 

Thank you so much Alto for taking the time to help me frame and navigate this situation. (And my deepest apologies if I seem to be beating a dead horse over semantics, it just that there’s an enormous difference between the recovery implications of 1) withdrawal and an 2) an adverse reaction.

 

Thank you again so much. 
Mike1972

[Altostrata]

Your key adverse event was cold turkey off mirtazepine in 2019 against a backdrop of prior drug changes that didn't seem to cause any problems but may have sensitized your nervous system somewhat. You then had an adverse reaction to gabapentin. The symptoms you have now appear to be from nervous system upset from taking gabapentin, plus sleep disruption, a withdrawal symptom almost universal among psychotropics.

 

Putting a label to it really doesn't matter. Your nervous system needs to settle down from drug changes. This will be very slow and gradual.

[Mike1972]

9 minutes ago, Altostrata said:

Your key adverse event was cold turkey off mirtazepine in 2019 against a backdrop of prior drug changes that didn't seem to cause any problems but may have sensitized your nervous system somewhat. You then had an adverse reaction to gabapentin. The symptoms you have now appear to be from nervous system upset from taking gabapentin, plus sleep disruption, a withdrawal symptom almost universal among psychotropics.

 

Putting a label to it really doesn't matter. Your nervous system needs to settle down from drug changes. This will be very slow and gradual.

 

Thank you so much Alto.

Your explanation here really distills everything for me......my deepest gratitude for helping me understand all of this.

 

And, truly respectfully --- you mention that putting a label to it doesn't matter......but doesn't it in fact matter (at least a bit)?

From what I've read in the SA thread as such -- for adverse reactions, one ought to realistically not expect a typical withdrawal-type recovery.

(i.e., unpredictable and possibly much longer....?) Perhaps I've misunderstood that.

 

Despite having been through the rough Mirtazipine CT/WD before....and it was rough.....this latest development (with intensely neuromuscular compromise and deep nerve pain).....this feels unbelievably difficult to fathom as a condition to live with for an unpredictably long time. 

 

But if I can somehow believe that recovery is indeed eventually possible......then I can do this.

I will try not to heavily besiege this forum with my fears and struggles for a while.

(I will try!)

[Altostrata]

No, it doesn't matter what you call it. Recovery is gradual, slow, and individual.

[Mike1972]

Managed to hack some good sleep (for the first 2/3 of the night) last night. Playing the quiet music seemed to tamp down some of the hypnic sleep-jerk activity. 
 

August 18

8:15am - get up
8:20 am - muscles super weak and sore/stiff. Hands feel like they are puffy and broken. (They look normal of course.)
8:30 am - breakfast
9:00 am - anxiety
10:00 am - back in bed to try to calm down, unsuccessful 
11:00 am - try to ride exercise bike for a minute or two. Legs are just *not* working properly, they feel weak, disconnected and full of lead.
12:30 lunch 
1:00 - 3:00 efforts to talk to employer and medical providers
3:00 anxiety of course
4:00-6:00 reading lots of SA 
7:30 dinner
8:30 - have idea for sleep - decide to try wearing stretch leggings and stretch long-sleeve athletic shirt as “sleep outfit” (to try to minimize amount of friction on sensitive burning arms/legs)
8:45 - lie down to take “trial nap” - I fall asleep several times
9:30 - chatting with girlfriend quietly on couch
10:00pm - 1 mg Mirtazipine, 450mg Valerian, 3 mg Melatonin
10:15pm - lights out. have classical music playing quietly to try to help keep brain from alerting/jerking so much in sleep
10:15pm - 5:00am - uninterrupted sleep!
5:15-7:30 am - unsuccessful attempts to sleep
7:30 - 9am - partially successful attempts to get short bursts of sleep

[Hanna72]

Hi @Mike1972

50 minutes ago, Mike1972 said:

Managed to hack some good sleep

That’s progress in the right direction. In my own  recovering journey I try to focus on every single positive improvements, even though sometimes I wish for more. I like how much you try to find different coping skills to help with your symptoms, well done👍
Calming music is so good to listen to isn’t it!

You are doing a great job and you will be so thankful in the end when your symptoms settle, that you kept on pushing through.

You deserve to live your best life, with clear mind and a body that functions with out drugs.

Believe you can

and you are half way there💪

Patience and time Mike, and you will reach your destination.

 

Take care🙏

[Mike1972]

So....another terrible night of not sleeping. Nerve and pain symptoms are still getting worse. I feel like I should itemize them here, for the sake of quick up-to-date/at-a-glance reference. **Also because** — my Psychiatrist and Neurologist are both encouraging me to raise my dose of Mirtazipine back up somewhat, to (in their minds) hopefully offset some of these symptoms (that all leapt into place once I was put on Gabapentin a month ago, before swiftly tapering back off again.)

 

* head-to-toe strong painful burning and tingling of skin (increasing dramatically)

* muscle weakness/muscle pain/muscle cramping/muscle twitching/increasing clumsiness of hands
* painful joints

* “alerting” symptoms:  insomnia, and also muscles tense up / random parts of body will jerk when I try to go to sleep

Despite the two professional “experts” (P-doc and Neurologist) telling me to consider raising the Mirtazipine dose back up somewhat....what kind of hell might that be possibly unleashing if I were to do that? (Neurologist also wanted me to consider Klonopin.....but backed off on that one when he heard that the Psychiatrist thought that was a bad idea.)

 

Is there any chance in hell of a slightly-raised Mirtazipine dose being of ANY benefit? 

 

Thanks, I feel so lost. It feels like, on one hand, that these physical symptoms are too inhumane to suffer any further (it really feels like I’ve had my hands and feet broken and then bathed in fire 24/7, and sleep does not happen...) but at least my mind is still reasonably clear, if at wits end with how things have snowballed. And on the other hand....I feel like I desperately need to do (or add, or change) *something*, just so that I can survive this insidious torture chamber, that doesn’t show any indication of slowing its rapid pace of building pain upon pain and crippling muscle symptom upon symptom.  

 

I fear that tampering with Mirtazipine would potentially cause a big upset to the cognitive/emotional end of things. Is there any *remote* possibility that slightly up-dosing Mirt would bring any benefit in the wake of what has happened with Gabapentin?

Currently at 1mg.

Originally at 15mg, CT/WD’d in October, reinstated at 3.75mg two weeks later and stabilized (insofar as how I felt) completely within three weeks. Held for four months or so @3.75mg, then began to taper (at what was by SA standards too fast a taper.)

 

Sorry if I appear to be needing talking off a ledge, it’s tough when you’re in such real physical pain and your doctors “line up” to push you to do something with your medication.

 

Mike1972

[Altostrata]

Sure, you could increase mirtazapine slightly, see if it helps. I wouldn't increase by any more than 1mg because of the risk of kindling -- your sensitized system reacting adversely to more drug.

 

Please let us know how you're doing.

[Mike1972]

@Altostrata,

Thanks for that insight/possible up-dose reference point. I keep getting warned about possible kindling from a multitude of sources (although certainly not by doctors.)

 

I keep coming across the strong caution that I don’t want to be doing anything / adding anything that might increase GABA, but I admit I don’t understand that specific warning. I thought GABA was the nervous system’s “brake pedal” and that in an alerting situation, a CNS likely has too much Glutamate “accelerator pedal” activity (and that’s why the CNS is so excitable/hypersensitized....?)
 

That being the case, wouldn’t more GABA be beneficial? To calm the CNS back down? Or are the GABA receptors in an alerted CNS simply too compromised to be able to properly work with/handle more GABA? (And thus an influx of more GABA would cause more instability/imbalance?)

Of note:

Currently I take 450mg of Valerian root at bedtime. (I have for the last six months.) From what I’ve read, Valerian apparently binds to GABA receptors in a fashion similar to a Benzo. ***And so (this is a key point)*** —- I’ve been warned by individuals in a FB group not to take any *more* than that, for concern of “increasing GABA.” And similarly to avoid any other medications of course (like benzos) that influence GABA. Do both of these recommendations ring true (or make sense) to you?

 

It would seem (on the broad unexamined face of it) that increasing GABA would be a good thing. And yet it’s being hammered into me to make sure not to do that.

 

Working diligently to get up to speed on grasping all of this as fast as I can. In meantime, hard not to feel like walking blindfolded through a field of land mines. (What would be possibly helpful? What wouldn’t be possibly helpful? And what would almost certainly blow up in your face? )

The instinctive reaction In this situation is to freeze and do nothing.. But the continued ramp-up of pain and symptoms makes it Increasingly hard to do that. So it feels the smartest thing is to learn as much as I can, before getting to a “breaking point” where I feel compelled to try *something.*

 

Mike1972

[Altostrata]

Trying to address, manipulate or "balance" neurotransmitters makes no sense when the nervous system is in an uproar. Use of any substance would be trial and error. Valerian may work for you or it may not. This cannot be predicted by theories about GABA or anything else.

[Mike1972]

Thanks for that @Altostrata.....that’s a very grounding reality check. Enough said. 

Oh, how the brain in crisis roves and seeks definitive answers, especially when there are none. 

 

To that end -

Getting past my fixation on how long it might take to stabilize, and how I can find a means of “surviving (the grueling effects of these) antidepressants”....... I find that I am most dismayed with the idea that I’ll be possibly left with some permanent physical vestiges of this experience, namely the pronounced muscle tightness and hyperreflexia....body/leg/arm/head jerks are occasionally tripped off (subtly) lately while I’m fully awake, not just as I’m drifting off to sleep. 

 

Oh poor addled and besieged brain....please stop looking for reassurances. 

[Mike1972]

So....it’s clearly mini-seizures / brain zaps.

 

I think that’s the best definition of what’s happening to me. They occur every night (or even anytime during the day OR night) when I try to sleep or nap, just before I would otherwise drift off to sleep. Somewhere, randomly, an arm, a foot, my shoulder, my torso, will do a sharp, jerky cycled motion. And it promptly brings me back to wide-awake and prevents sleep from happening. 
 

Originally I thought I was getting  what would be described as fairly-benign hypnic jerks (my girlfriend gets those in her arms when she is drifting off to sleep), but I’ve realized mine are more serious and involve my entire body. (Including my head and face/jaw/mouth.) 

 

Also there’s a frequent “brain zap” feeling that could be best described as feeling like a camera flash-bulb briefly went off in your brain.

 

How scared should I be of this? It’s doing a damn good job of keeping sleep from happening, and it’s got me worried as heck that with this most recent three weeks of Gabapentin I’ve stoked a permanent seizure condition.
 

(When I’d been first put on Gabapentin two years ago, there were soon thereafter two separate episodes where I woke up to find my right arm flailing around on its own (is that called myoclonus?) It took a good half-minute for it to stop doing it. This stopped happening very soon after, but I was on several other meds at the time (Ativan, Lexapro, possibly had started Mirtazipine by this point) so it’s hard to know exactly what “calmed” things down, or if it simply settled on its own.)

 

While all of the other neuromuscular and nerve pain symptoms are considerable and alarming, this seizure-like activity has me the most concerned.

I’ve tried the various tips to keep the brain from “alerting” when I lie down to sleep (playing music), but this seems to be not so much simple alerting as it is low-level seizure-type activity occurring. And it seems to be getting possibly stringer.

 

Truly scared....what options even exist to deal with something like this, a possible drug-WD-induced seizure activity? Do these types of things ever resolve? This element alone is currently fast eroding my belief in likely recovery.

[Mike1972]

Sorry, just wanted to clarify,
In the post above (from an hour or so ago,) when I mentioned “this last three weeks of Gabapentin,”— I meant this *most recent three-week course of Gabapentin* (which concluded 12 days ago. 
 

Q: In the event of someone having an *adverse reaction* to a medication (Gabapentin) and then being hurriedly tapered off, do the usual rules of partial reinstatement for WD symptoms not apply? (As in, reinstating a drug that one had an adverse reaction to...seems like it would bring its own new assortment of unpredictable and undesirable issues back to the table...)

Trying not to catastrophize. But this increase in seizure-ish jerking is frightening the heck out of me, especially since it seems there’s possibly no clear remedy.

[Altostrata]

It sounds like you are having hypnic jerks, not brain zaps. We have already discussed ways to distract your nervous system from alerting when you're trying to sleep.

 

If this is your worst post-discontinuation symptom, your situation is not bad. Keep working on calming your nervous system and this will slowly get better.

 

Don't overthink it.

[Mike1972]

Thanks @Altostrata,

 

I’ve hope you know I have been trying really hard not to overthink it, I really have. But for anyone in sharp WD that’s not the easiest.

 

I lie awake and wonder where the line gets drawn between hypnic jerks and seizures, for instance. And the brain-zaps really do feel like a sharp “zap!” when they happen, like a white light (and zap of electricity) has flashed in the brain.
 

The jerking isn’t necessarily the worst symptom (the skin burning head-to-toe and locked-up/weak and painful muscles and hands really are), but the jerking is preventing sleep even more than the general pain and insomnia is....so it’s making everything else seem far worse. 
 

I know from extensive reading on SA that this is all par for the course for your basic “acute withdrawal laundry list” of symptoms....I guess the fact that Gabapentin is part of the equation (and has been associated in WD with leaving seizures in previously healthy people) has me fretting an extraordinary amount.

Afraid of ending up presenting and needing seizure medication at some point during WD, that’s what’s got me spiraling.

 

Sorry to come to you so distraught.

[Altostrata]

Please Google hypnic jerks.

 

Are you prone to health anxiety?

[Mike1972]

2 hours ago, Altostrata said:

Please Google hypnic jerks.

 

Are you prone to health anxiety?

 

Hi @Altostrata.
 

Ha! Yes, I’m sure I am. I would bet that any psychiatrist (or layperson) would pretty readily and easily diagnose me as prone to health anxiety. At least lately I am. 
 

So to your request, I went and googled “hypnic jerks” quite a few times now. And....my apologies, I have to admit that indeed they do fit the description of my nighttime symptoms I’ve given you pretty completely. So I have to concur that those nighttime symptoms are not extraordinary for WD.

 

I guess in hindsight, I’ve simultaneously made myself “worry even more” about the night-time hypnic jerks, because of what is being experienced with the body during the daytime - where it’s having seemingly involuntary “micro jerks” in joints. Muscles are all tensed and apparently “ready to fire” involuntarily at any moment, such that I can’t get them to relax and sit still very well. Perhaps now I should look at that as better fitting under the heading of “hyperreflexia,”’ though. (I’m sorry, I learned that word just in the last week). And hopefully that’s just what muscles do when the body is hyper-tensed and alert.

 

Yeah Alto, I’m a health-anxiety ball of wax right now. I’ll do my best to get that together and present a bit more collectedly. Very much want to converse in the appropriate tone with you all.

[Altostrata]

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

[ChessieCat]

A member recently posted this:

 

On 8/2/2020 at 6:49 AM, mstimc said:

 

And one last piece of wisdom from my wife.  She told me that living my life afraid of being sick is just as bad as having a real disease.  That stuck with me.

 

 

This is a site with some excellent self help resources.  Scroll down to see the list:

 

https://www.getselfhelp.co.uk/selfhelp.htm

 

This one in particular may be helpful:

 

https://www.getselfhelp.co.uk/healthanxiety.htm

 

or this one:

 

https://www.cci.health.wa.gov.au/Resources/Looking-After-Yourself/Health-Anxiety

 

You might also find this useful (female and male voices):

 

https://www.getselfhelp.co.uk/music/FirstAidPanicF.mp3

 

https://www.getselfhelp.co.uk/music/FirstAidPanicM.mp3

 

 

[Mike1972]

26 minutes ago, 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

I fully agree with you Alto! I do.

And I’m actually scheduled to talk this evening with my therapist. Very much trying to work all of these facets

through the appropriate professionals and not lay that on you guys.

 

And @ChessieCat, those are great words and look like great resources, I will gratefully dive into them.

 

(Perhaps unnecessary.....but to briefly and better quantify some of the origins of a good deal of this specific health anxiety -

 

Just two years ago (at the advice of doctors) I took an excess of Vitamin B6 following a routine neck surgery (to supposedly “help pinched nerves heal faster”) and as a result, the ensuing accumulated vitamin toxicity created....guess what.....head-to-toe burning neuropathy and muscle weakness/clumsiness/pain that took a good 5 months of enduring hellish pain to ultimately resolve.

 

So a good deal of my health anxiety originates in the return (via psychiatric drug effects) of almost a carbon-copy of those very symptoms. And at only about 18 months ago, it’s all still pretty vivid and traumatizing:
 

So having now done “double damage” to my nerves,  I guess it’s just still extra-hard for me to embrace that guiding light that everyone in WD ultimately needs to, that “this has just as good a chance to resolve well for me as it would for anyone else.”

 

I do need to get past that.

[Mike1972]

Hello again,

So I actually have some good news! (and a question to ask today.)

 

So first the good news! (At least for one night) -

The "hypnic jerks" at bedtime were significantly reduced in their intensity last night, and I was able to sleep a fair amount. 

Even when everything else is in such bad shape, it's encouraging to have a small "win." Hope for this to be a trend!

 

Secondly - I have a significant question to ask: 

In considering (very very carefully) the question of possibly trying a small up-dose:

I'm very much hoping to see what moderator insight might be relative to "which drug to up-dose?" since both Mirtazipine and Gabapentin are part of the mix here.

 

Asking because:

While I had made some steep (%age) drops in Mirtazipine in the months of May and June, I hadn't noticed any physical or mental/emotional/cognitive WD effects.

It wasn't until Gabapentin was added to the mix (in mid-July) that things rapidly began to deteriorate, and get quite bad within 12 days....such that the decision was made to immediately taper/cease the Gabapentin.

 

So in this case.....in very carefully considering the approach of slight up-dosing.....how would one make any kind of determination as to which drug to do so with?

I am also being infinitely cautious-minded about all of this, since the possibility of "kindling" with an up-dose that has been impressed upon me by Alto and other knowledgeable/concerned individuals. Hoping for someone's perspectives as to which med would be the one to even consider doing this with.

 

Drug timelines:

Mirtazipine

October 16 - CT

October 24 - WD hits

November 2 - reinstated at 3.75mg. Largely stabilized and feel pretty good again within three weeks. 

January 24 - drop to 3.00mg (two weeks later, a few nights of insomnia come and go.)

Feb. 24 - drop to 2.50mg

Feb. 28 - drop to 2.00mg

May 24 - drop to 1.50mg

June 10 - drop to 1.00mg (*still holding as of August 23)

 

Gabapentin

July 16th - 100mg

July 17th - 200mg

July 18th  - 300mg (3 doses per day of 100mg)

July 22nd - raise dose to 600mg/day (3 doses per day of 200mg) *notice anxious breathing, sense of being "wired"....that night, both arms cramp up badly*

July 23rd - Body aches appear - fingers, palms, starting in toes

July 27th - Perceived weakness in left ankle. Right forearm beginning to have muscle pain.

July 28th - Full-body "reaction" suddenly evident. Electrical tingling and burning over entire body.

July 29th - Doctor says to drop dose to 400mg/day (2 doses of 200mg). Electrical tingling seems to go away.

July 30th - Hands suddenly feeling stiff

July 31st - Decision made with doctor to taper off medication. Legs now feeling exhausted/fatigued.

Aug. 1st- drop dose to 300mg/day (3 doses of 100mg)

Aug. 4th - drop dose to 200mg/day  (2 doses of 100mg). Powerful leg twitches begin.

Aug. 7th - drop dose to 100mg/day Extreme fatigue in arms/legs. Feel like full of cement.

Aug 8th - split 100mg/day dose into 2 doses of 50mg

Aug. 9th - last day of Gabapentin (2 doses of 50mg) Body is completely sore and weak everywhere now.

Aug. 10th - no Gabapentin 

 

Aug. 11th - Aug. 23rd (today):

Continued progression/increase of symptoms.

Worsening full-body burning skin sensation, allodynia (any pressure on skin feels like painful force)

Hands/Feet/fore-arms/shins feel the pain inside like they are "broken", and are also clumsy to respond/stiffly painful

Continuing twitching and "jumpy" jerky response to all muscles throughout body

Increasing sense of anxiety (cognitive "panicky" feeling as well as physical symptoms "air hunger", increased pulse, sweating, feeling hot)

 

So I'm at a big loss at the moment, totally confused as to which drug would be the most logical one to consider up-dosing with.

 

Thanks again for your time and level-headed insights. 
For what it's worth....I very much hope to make it through this and be able to give back to this community in some very meaningful way.

 

At this moment in time, I'm sure something to this extent has been said on these forums before.....but I would in a heartbeat trade all my physical belongings, money, and job if I could have my mind and body somehow find their way back from this. 

 

Deeply appreciatively,

Mike1972