WiggleIt: Tardive dyskinesia & dystonia from TCAs/nortriptyline/desipramine; rapid taper & benzo trouble, too

[Wildflower0214]

I would undoubtedly screw up the taper. I only passed chemistry cheating off the girl who sat in front of me.

This made me laugh! You will be ok!! there is lots of help here.

[WiggleIt]

I would undoubtedly screw up the taper. I only passed chemistry cheating off the girl who sat in front of me.

 

I cheated off my boyfriend!  And the nuns caught me and TOTALLY embarrassed me in front of the class.  

[WiggleIt]

We will all recover because we are good people unselfishly reaching out to others who are suffering in the midst of our own anguish. God smiles on people like us. I just know it. With all my gastro issues in w/d, I went in last September to have my gallbladder removed. I coded on the table. Doctors revived me. Didn't have NDE darn it. But I know God saved me. As He will ALL of us because He has something else in mind for us. It is just around the corner.

 

I totally believe God saved you and I think your sentiment is true about all of us helping others throughout our suffering…

[Wildflower0214]

 

 

I would undoubtedly screw up the taper. I only passed chemistry cheating off the girl who sat in front of me.

I cheated off my boyfriend! And the nuns caught me and TOTALLY embarrassed me in front of the class.

Nuns!!! I had nuns in HS!!

[Pugknows]

 

 

 

I would undoubtedly screw up the taper. I only passed chemistry cheating off the girl who sat in front of me.

I cheated off my boyfriend! And the nuns caught me and TOTALLY embarrassed me in front of the class.

Nuns!!! I had nuns in HS!!

[Pugknows]

Catholic grammar school and high school. I was born and raised on guilt. The nuns used to tell us that, when we die, all our sins will be put on a big drive-in screen for all the world to see. Wonder how many of those angry nuns were on psyche drugs. ALL OF THEM!

[Pugknows]

Wish my withdrawal agony had been projected on a movie screen for me to see before I took my first pill...

[Pugknows]

Now THAT'S a horror movie and I'm a Supah-Stahhh!

[Pugknows]

How ya doing Wiggle?

[UnfoldingSky]

I get to go to sleep tonight Whenever THAT happens) with this lovely thought in mind! Thank you, Sky!

 

Hey no problem, glad to be of help!

 

WI, don't worry about freaking out, if you could have seen me in real life when I was in the worst of this you wouldn't even think what you were doing was freaking out. I was a right hot mess.

[WiggleIt]

How ya doing Wiggle?

Bad. Really bad. I had a few good hours earlier today, but terrible head tremors began when trying to fall asleep.

 

Also, I am starting to get brain zaps as I fall asleep, and face scrunching as I fall asleep. Face scrunch had settled down a bit, but is now back accompanied with pins and needles feeling on face, so much scarier.

 

Thinking about reinstating and going down slower, but don't want to run risk of making self worse and entering lifetime spiral of psych drug dependence. Also, what if this hell happens again?

 

How you, Pug?

[WiggleIt]

Wish my withdrawal agony had been projected on a movie screen for me to see before I took my first pill...

Truth. Wish it had been projected for my doctors to see before they prescribed it.

 

Also, wish they had known how to make CORRECT diagnoses so they could have spared me this.

[luv2knit]

WI, just stopping by with best wishes for improvement, and at least a peaceful day.

 

Prayers.

[WiggleIt]

Knit,

 

You must be a kindred spirit bc I was just going to head to your thread and check in on you.

[WiggleIt]

Finally getting around to asking some specific Qs about a possible reinstatement after CW and Alto and some other mods and peeps gave me some general tips on the RI thread...

 

Here is the backstory:

 

-I was put on Ativan in 2011 for pelvic pain and bladder urgency and took 1 mg per night

-In May 2012, my doc had me rapid taper off Ativan and put me on nortriptyline.  I did not notice any probs at this time.  Pain seemed better on 20 mg nortrip and I very rarely needed to use 1 mg Ativan, only in emergencies about once a month

-I was on nortriptyline from May 2012 - Dec 2013   

-Doc had me rapid taper off nortrip and quickly updosed me to 60 mg desipramine in January 2014, bc my bladder symptoms were no longer being helped by nortriptyline

-Things (in terms of chronic pain) didn't seem better on desipramine, so I decreased desipramine by 10 mg each month throughout 2014.  Held at 30.

-I was really sick throughout all 2014.  Muscle twitching, tremors, lethargy, nausea, dehydration, diarrhea, right leg dragging and started needing a cane at all times, shoulders constantly pinched upward, left shoulder blade cripplingly rigid, trouble swallowing, constantly choking on food, trouble breathing

-I was using occasional Ativan from Dec 2013 - October 2014, but had paradoxical reactions to all benzos after going off of desipramine

 

Here are the questions:

 

-How do I know if I was withdrawing from nortriptyline while I was on desipramine?

-Or was I withdrawing from desipramine for all of 2014 because I was going down by those 10 mg jumps?

-Or was I having adverse reactions to desipramine while I was on it?

-Or were the adverse reactions to desipramine simply an illusion bc I was actually withdrawing from nortriptyline, as opposed to reacting badly to the desipramine?

-I am off TCAs as of October 29, 2014.  Off benzos as of Nov 2, 2014

-I am getting close to the 3 month mark off TCAs.  Is it too late to RI?

-If not, which TCA would I RI?  The first one I was on, or the last one I was on?  I ask that because of the confusion with the switch the doctor made me do

 

Also, I found an article written by a team of military psychiatrists about discontinuation syndrome and it talks specifically about what happens when docs cold switch people from one AD to another.  It was published in American Family Physician:

 

"Antidepressant discontinuation syndrome has been reported when switching from one antidepressant agent to another. When the new agent has different pharmacologic mechanism reactions than the first agent, antidepressant discontinuation syndrome may be misinterpreted as intolerable side effects from the new medication."

 

Unfortunately, the article perpetuates the myth that withdrawal (a.k.a. syndrome) only last 1-2 weeks, but it did have other useful info about meds, half-lives, and symptoms.

 

Here is a link to the whole thing:

http://www.aafp.org/afp/2006/0801/p449.html

 

Any help with my questions above would be great!

[WiggleIt]

Also, I had brain zaps start two days ago.  I was so grateful because I thought I wasn't coming down with those, but now they've started.

 

Also, if RI goes poorly, I've read here on this site that once you make a choice, you HAVE to stick with it in order to allow your nervous system to stabilize. So if I RI, I am stuck there.

 

Basically, the point of any choice is to stabilize.  Well, if RI doesn't help, then I'm stuck with the chemicals in my body, right, and I'd have to slow taper off the RI?  And if I RI, how long do I have stay on again before I start the slow taper?  

 

I don't want to do anything that will cause me to ping-pong around my already messed up nervous system and, so far, the ONLY thing I have in my favor is the fact that I have managed to avoid a slew of going on and off meds.  I am concerned that RI could open a door to beginning the ping-ponging.

 

Of course, I don't want to flop around every day or have a seizure, and I'm afraid that these new brain zaps could be the open door to eventually having a seizure.

 

CW and Alto have suggested reinstating btwn 1-3 mgs.  I cannot get into a new doctor for another week, and I have no idea if this person will be amenable to helping me, or have any kind of knowledge base.

 

I'm truly terrified to reinstate and terrified not to.  I know that it has to be my choice and y'all can only give me your best advice.  You've already given me a lot. Now that I've added more details, maybe it can help some of you guys to help me.

[Altostrata]

Finally getting around to asking some specific Qs about a possible reinstatement after CW and Alto and some other mods and peeps gave me some general tips on the RI thread...

 

Here is the backstory:

 

-I was put on Ativan in 2011 for pelvic pain and bladder urgency and took 1 mg per night

-In May 2012, my doc had me rapid taper off Ativan and put me on nortriptyline.  I did not notice any probs at this time.  Pain seemed better on 20 mg nortrip and I very rarely needed to use 1 mg Ativan, only in emergencies about once a month

-I was on nortriptyline from May 2012 - Dec 2013   

-Doc had me rapid taper off nortrip and quickly updosed me to 60 mg desipramine in January 2014, bc my bladder symptoms were no longer being helped by nortriptyline

-Things (in terms of chronic pain) didn't seem better on desipramine, so I decreased desipramine by 10 mg each month throughout 2014.  Held at 30.

-I was really sick throughout all 2014.  Muscle twitching, tremors, lethargy, nausea, dehydration, diarrhea, right leg dragging and started needing a cane at all times, shoulders constantly pinched upward, left shoulder blade cripplingly rigid, trouble swallowing, constantly choking on food, trouble breathing

-I was using occasional Ativan from Dec 2013 - October 2014, but had paradoxical reactions to all benzos after going off of desipramine

 

Here are the questions:

 

-How do I know if I was withdrawing from nortriptyline while I was on desipramine?

-Or was I withdrawing from desipramine for all of 2014 because I was going down by those 10 mg jumps?

-Or was I having adverse reactions to desipramine while I was on it?

-Or were the adverse reactions to desipramine simply an illusion bc I was actually withdrawing from nortriptyline, as opposed to reacting badly to the desipramine?

-I am off TCAs as of October 29, 2014.  Off benzos as of Nov 2, 2014

-I am getting close to the 3 month mark off TCAs.  Is it too late to RI?

-If not, which TCA would I RI?  The first one I was on, or the last one I was on?  I ask that because of the confusion with the switch the doctor made me do

 

Also, I found an article written by a team of military psychiatrists about discontinuation syndrome and it talks specifically about what happens when docs cold switch people from one AD to another.  It was published in American Family Physician:

 

"Antidepressant discontinuation syndrome has been reported when switching from one antidepressant agent to another. When the new agent has different pharmacologic mechanism reactions than the first agent, antidepressant discontinuation syndrome may be misinterpreted as intolerable side effects from the new medication."

 

Unfortunately, the article perpetuates the myth that withdrawal (a.k.a. syndrome) only last 1-2 weeks, but it did have other useful info about meds, half-lives, and symptoms.

 

Here is a link to the whole thing:

http://www.aafp.org/afp/2006/0801/p449.html

 

Any help with my questions above would be great!

 

WiggleIt, I would put the question of reinstatement aside. My impression is your nervous system is so sensitive, this would not be a good idea.

 

You mentioned a neurologist specializing in movement disorders. Is there any way you can see this doctor faster? Perhaps ask to be put on the waiting list in case of cancellations?

 

You might discuss a nervous system-calming drug such as lamotrigine at a very low dose. Read these topics

One theory of antidepressant withdrawal syndrome

dysautonomia

 

Yes, your problems may date from when you switched from nortriptyline to desipramine. Whether they were withdrawal symptoms from nortriptyline or adverse reactions to desipramine, I don't believe you can tell.

 

Please try to stay calm. Anxiety can make your symptoms worse.

 

Yes, people do recover from very severe symptom patterns, including tardive dyskinesia.

[UnfoldingSky]

Hi WI, just checking in to see what is going on.  I wish the movement disorder doctor would get you in sooner.  It bugs me you have been left in limbo like this unsure as to what is happening. Regardless I will be thinking of you and praying for your healing. 

[WiggleIt]

Sky and Alto,

 

Thank you. My parents are helping me stay on top of the doctors to try and get in sooner.

 

I will look into that new medication and see if it is something I am comfortable with. If it's another beast that crossesy blood brain barrier. Sick now must go.

[Wildflower0214]

Hey there. I hope the dr helps you. I'm sorry I've been too busy lamenting my own situation and being a manic basket-case to reply to your thread lately.

 

Praying for you and hope you get some answers.

[Skylarblue75]

Wigglelt, thank you for stopping by my post, my heart breaks for you. I thank god that you have your parents to care for you and support you. Time is all our enemies.

[WiggleIt]

Been very light and sound sensitive past few days, so not able to stop by as many of my friends' threads as usual and have only been able to leave fairly short messages, but please know that I am always thinking of all of you.

[WiggleIt]

I feel like I had my best window last week, but then it was followed by my worst wave.  Is this a normal pattern?  I keep hearing that things are supposed to get better little by little, so I was shocked by this worsening wave.

[cymbaltawithdrawal5600]

WI, this is something that just happens. I tell people not to get attached to either windows OR waves because they will flip flop often. Just do what you can to take care of yourself and let us know how your doctor's appt goes next week.

 

Recovery from any psychoactive med is not linear, it's just not.

[Brandy]

I feel like I had my best window last week, but then it was followed by my worst wave.  Is this a normal pattern?  I keep hearing that things are supposed to get better little by little, so I was shocked by this worsening wave.

 

It doesn't always happen like this, but the pattern you describe is extremely common. Distressing til you realize it's quite a normal part of the overall healing pattern, but it's nothing to be alarmed about. It was my pattern for a long time once I started getting waves and windows. Apparently it's part of the body rebalancing itself as it does the complex and amazing job of healing and normalizing. Someone named Jen on another group long ago described it as a "Rubik's cube," which many of us found very apt.

 

When I started having this pattern (for too long my withdrawal was just one long worsening wave, which was very discouraging), my feeling was that I had gone back to square one. I later learned that although that's what the brain thinks at first, it is absolutely NOT the case.

 

The best way fior me to deal with those waves following windows once I realized how the process works, was to realize and then keep reminding myself that any improvement was proof that I could indeed feel better and wasn't going to remain in withdrawal. That knowledge is huge! But the recovery is notoriously a non-linear process. And in time, you will get more and better windows, and more frequently, with the waves diminishing. The key is giving the body time to do all the intricate maneuvering involved in the healing process.

[Brandy]

CW posted while I was typing. We are so familiar with the non-linear nature of withdrawal here!

[UnfoldingSky]

Ah yes, the famed Rubik's cube analogy, I always loved that one!  So apt.

 

WI, I am sorry things have slid for you.  It's definitely not unusual for this to happen though.  Try not to get discouraged.  Thanks for stopping by my thread even though you aren't feeling well.  I appreciate it, the article you posted was quite helpful.

 

I am sorry you have the sensitivities going on too.  They were bad for me.  If you haven't done this already, try turning down the brightness of your computer screen. It will help a bit.  

 

Also there's a thread around about blue blocking glasses (special kind of glasses with yellow lenses) that others have said were helpful.  If things are really bad you might look into getting a pair. 

 

I had to wear sunglasses sometimes, even indoors.  The sensitivites do go away.

 

Thinking of you,

 

US

[luv2knit]

WI, sorry I have not been by as often as I would like. I've been in a pretty bad way lately--and now finally figuring out I actually am dealing with some sort of bug, on top of withdrawal.

 

I hope you are able to make a definite decision regarding reinstatement. Glad Alto got back with you on this, since she seems to be very knowledgeable. Also hope you are able to see the doctor you are wanting to see soon. My thoughts and prayers are with you.

[WiggleIt]

I'm doing awful.  Bladder pain bad.  Right side of body, the side that got weakened by the TCAs, is increasing in tremors and is also colder than the left side of my body.

 

Has this happened to anybody else?  Does it go away?  Is my body forgetting how to circulate its own blood?

[WiggleIt]

Increasing tremors on right side of body.  Don't want to lose use of right arm.  Increasing tremors in feet.  Bladder pain worse than I remember it being pre-meds.

[WiggleIt]

I feel I am doing a bad job stopping by others' threads bc I am so mired in my own illness, which makes me think I will not receive the karmic blessing of others coming to my thread.

[UnfoldingSky]

WI, don't worry about it, do whatever you can.  We're all at different stages in this and some are able to do more than others, don't burden yourself unduly.

 

We're still here.

[UnfoldingSky]

Also about your questions I am not sure of the answers.  Hopefully others will pop in here, seems to be a bit of a slow day around here or maybe that's just me. 

[WiggleIt]

Sky, you have no idea how much I love you. Sometimes I feel like you are an angel here just to comfort me. Your kindness is always ready when I most desolate. I hope I am well enough someday to comfort you if you need it.

[Wildflower0214]

Yes! I have the coldness in one side of my body, especially when symptoms ramp up. My main symptom now appears something like hypomania. It's awful!!!! But if I get cold quickly, I know it's coming and lately it's on my left side. It's just CNS wonky and it will correct in time.

[luv2knit]

Having a bad night myself, Wiggle, but my thoughts and prayers are with you.