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

[WiggleIt]

Hi Y'all!  Wow, I don't even know where to begin....

I've been super reticent on here and very absent from the whole site because, frankly, I've had a terrible past two years.  None of it has been directly WD-related, although I have to acknowledge that the permanent physical side effects of the psych meds have made it more challenging for me to heal from normal things, the way I used to heal normally before psych meds.

The skin disorder is still present on my face.  I've been wearing flu masks for two years to cover it up; ironically, now EVERYONE is wearing face masks because of COVID-19.  The face skin disorder was most likely not an effect of psych meds, but it's possible that the psych meds made me a little more vulnerable to developing it.  Most people in my skin disorder support group do not have psych meds or psych med WD in their history; we all do share a common risk factor, but it's not psych meds.  So... that's that.  My face skins may be stuck this way forever, and that's just that.  Who knows, though?  Maybe I'll get a miracle.  After all, I never thought I'd heal as much as I did from psych meds, but I did.  So... maybe someday I'll have a normal face again.  

I really couldn't sit at a desk to type for the majority of 2019, which is why I was just gone from SA.  My ruptured disk and sciatica were so intense that I could not physically do it.  I never ended up getting the steroid injection into my back, simply due to my intense fear that I might have an adverse reaction.  I think you all know how delicate our bodies remain, even after we recover from WD, and the fear of the unknown with news meds can be very intense.  Because of the lack of injection, my back improvement has taken a solid yea, and it's still not totally 100%.  The sciatica still flares if I'm not careful, but I'm no longer immobile from it.  Nobody in my life could believe that I was just white-knuckling it through that kind of pain, but... I did.  It's been a long road.  Every time I thought my back had turned a corner... BLAM.  I ended up laying on the floor again immobilized.  That hasn't happened in about two months, though, so... here's hoping!  And it's a really good sign that I can sit at my desk without flaring up again within 15 minutes.

Had I been a normal person without WD in my medical background, I'd have just gotten the steroid injection and been done with it.  I do feel I made the right decision for my body by not getting it at that point.  If things ever get worse again, I may have to reconsider—but, for now, I'm going to hope things just get better.  I'm not anti-medicine; I simply now know that I have to be careful about which medicines I take, why, and when—especially as a WD survivor. 

Okay, I'm going to try to answer back some of the individual questions that y'all have asked me.  Hoping to help with some modding again, but I currently can't, as one of my elderly parents is quite ill.  It's my turn to help them the way they helped me in my time of medical need during WD.  Until I can make sure my parent is better, I won't be able to concentrate on much else. 



 

Edited April 21, 2020 by WiggleIt

[WiggleIt]

On 2/4/2020 at 6:28 PM, Melissa5000 said:

Hello Wigglelt how are you?

 

How is your back pain now? 

 

Maybe by now you are allowed to start modest movement or low key exercise?

I can recommend the book Healing back pain by doctor John E Sarno. You can also find him on you tube. He died unfortunatelly. But I learned a lot from his books.

 

I have acne. I treat it with tea tree oil or CBD skin oil. I read it can help with many other skin problems too. Did you try these? 

 

Once in withdrawal I had a bad skin dissease I never had before.Pityriasis lichenoides chronica.  It was a very bad looking one with big  red dots on my belly, butt and upper legs. It shows up in autumn and winter. When I slowed down my taper it did not come back,  only a tiny bit for 2 months in the next winter. This year it was not there anymore in winter. The dermatologist said I would possibly have the dissease for ever as it was a chronic one! But it improved and now it has gone! In withdrawal our immunesytem  does not work at its best. So it is still quite possible your EC infection on your lips will heal when you are further out. Keep the faith! 

 

I wish you lots of healing! You have gone through so many. You are so brave! You are a big inspiration for me! 

Hi Melissa5000,

Thank you for asking!!!  I just wrote an update.  I've had a couple of months without a back flare, so I'm hoping that pattern continues on a good uphill  

Thank you SO much for your inspiring words about your skin <3 I am thrilled you imporoved, and I'll keep you in mind as hope and inspiration.

Love,
Wiggle

[WiggleIt]

On 10/27/2019 at 2:26 AM, composter said:

Hey WiggleIt, just came across your thread. Your support for others is very palpable, and I hope you have been treating yourself with the same kindness and patience. Totally fine to step away from the site to focu on your on well-being.

 

The pain sounds awful. And for the staph infection on the lips, I’m sure you’ve tried so many things at this point. If I could gently suggest something: ff the top of my head, I wonder if you’ve tried Manuka honey? Manuka honey in particular has very potent antibacterial activity, and has been proven  in some clinical trials to treat skin infections just as well, if not better than ABs (I believe staph included). It’s a thought, if you wanted to look into it and consider trying it. You can usually find it at Whole Foods and sometimes Trader Joe’s.

Hi composter,

Thank you so much for the Manuka tip!  I love the stuff and do use it internally and externally.  Sadly, it has made no difference on the skin disorder, but it's so nourishing overall that I do use it as a consistent part of my inner and outer nutrition.  Thank you <3 

[WiggleIt]

On 4/1/2020 at 12:09 PM, Leo1983 said:

@WiggleIt

 

Hi,

I see in 2018 you state your Anhedonia eventually healed. How long did that take?

 

Keep Safe

 

Regards

 

Leo

 

Hi Leo1983,

Okay, I will be honest that I don't totally remember, but it was looooong.  I actually kept very detailed symptom diaries, but I am unable to look that info up at exactly this moment.  Goodness, for it to heal 100% took well more than a year for NO remnants of anhedonia to ever come back.  My mental/emotional side effects took years to heal completely.  Years.  It was windows and waves... and then... all windows in my heart and mind again eventually.

I am so sorry that I do not have my notes handy right now to look up the exact timeline for you, but please do know that it got better and better and better... and then I was me again.  Just WOW!  Good "wow," I mean

[Altostrata]

So good to see you again, WiggleIt. As ever, your fortitude is extraordinary.

 

Are you doing exercise for your back? I've had to do them for years to avoid sciatica.

[WiggleIt]

5 hours ago, Altostrata said:

So good to see you again, WiggleIt. As ever, your fortitude is extraordinary.

 

Are you doing exercise for your back? I've had to do them for years to avoid sciatica.

 
Hi Alto!  Yes, I am able to do exercises for my back!  I was in such severe shape that I was not able to start the PT for my sciatica until late into 2019; I tried earlier, but the therapist told me I was in too bad of shape to even tackle the basics.  After waiting a long while, I was finally able to re-engage with PT

Yeesh on everything, right?  LOL.

[Altostrata]

Yeeesh is right! Glad you're doing better.

[JackieDecides]

On 4/21/2020 at 4:42 PM, WiggleIt said:

After waiting a long while, I was finally able to re-engage with PT

 

I'm so glad! nice to see you, WiggleIt! 

[JackieDecides]

On 4/21/2020 at 4:36 AM, WiggleIt said:

Hoping to help with some modding again, but I currently can't, as one of my elderly parents is quite ill.  It's my turn to help them the way they helped me in my time of medical need during WD.  Until I can make sure my parent is better, I won't be able to concentrate on much else. 

 

everyone understands that, I'm sure. big hugs to you! 

 

🤗

[Melissa5000]

Hello Wigglelt! Good to hear from you again! 

 

Nice that you help your parents now. 

 

I am happy for you that your back is improving! 

[WiggleIt]

My PT offices are currently closed, but I had a good session today at home by myself.  My back had a mini-flare two nights ago, but nowhere near the immobilization that it used to cause!  I rested it yesterday and did gentle PT today.

My parent is still fighting their infection, but is slowly improving.  Fingers crossed they keep getting better and better!  There is a 20% relapse rate in elderly folks for this particular infection, but I'm praying my parent does not relapse at all.

I hope you're all doing well!  Thank you for all your support <3 Looking so forward to better times ahead soon and to help out again.  

Edited April 30, 2020 by WiggleIt

[Emma7855]

Hi @WiggleIt -- Out of curiosity, did you hair/eyelashes/eyebrows ever grow back? Thanks

[JackieDecides]

@WiggleIt I came to see how you are doing and you having posted for awhile. Thinking about you and hope things are OK. ❤️

[WiggleIt]

On 6/18/2020 at 6:47 PM, Emma7855 said:

Hi @WiggleIt -- Out of curiosity, did you hair/eyelashes/eyebrows ever grow back? Thanks

 

Hi Emma7855,

 

Yes, they did! My hairline is a little thinner than in my youth and so are my lashes, but they DID come back after WD, which I had lost hope about for a long time. It was terrifying to watch chunks of eyelashes and eyebrows fall out, but it eventually stabilized. I believe it got better because of a couple of simple dietary changes. I had been trying to follow those very strict autoimmune protocol diets that tell you to chop out dairy, chop out dairy, and chop out soy. Based on what I observed in my own body, that was absolutely the wrong thing for me to do.
 

I bolstered my iron intake by adding organic, unsulfured blackstrap molasses to my diet. I also re-incorporated whole milk and re-incorporated soy milk. I tried to get as much sunshine as I could. Those things seemed to make a big difference for me to get my hair back! Also, I used castor oil on my brows. Like I said, my hairline is maybe a tiny bit thinner than when I was in my 20s, but I’m middle-age now, and I can tell you for sure that my hair and browse and lashes are way better than during withdrawal. I haven’t seen an actual chunk fall out in years.

 

I completely believe that auto immune protocol diets help people. There are simply too many stories out there for everybody to be lying. But I also have come to believe that people have to listen to their own individual bodies. For me, cutting out soy and cutting out dairy made my hair loss worse, so I just did my best to think back on when my hair was great and thick and healthy, and that’s what led me to decide to add back soy and whole milk. Plus, I knew from blood test that I was a little bit low on iron, and I knew from withdrawal sensitivity that I didn’t do well with iron supplements. That’s why I ended up using Blackstrap Molasses, a natural source of iron. 
 

I decided to use castor oil because I’d read so many good things about it, but it was just way too thick to use near my eyes. It was also so sick that it seemed to break the hair on my head off at the hairline, so that’s why I just stuck to using it on my eyebrows.

 

oh, and I also used Rosemary oil mixed with ha ha but oil on my scalp about once a week! I found some medical journal articles that said that rosemary oil can stimulate follicles and tiny blood vessels in the scalp, which can promote hair growth. It was a natural, so I figured I’d give it a shot. 40 drops of jojoba oil to 10 drops of rosemary oil mixed in a jar. Massage it into my roots and scalp, left it on for 45 minutes, then Cham puRosemary oil mixed with ha ha but oil on my scalp about once a week! I found some medical journal articles that said that rosemary oil can stimulate follicles and tiny blood vessels in the scalp, which can promote hair growth. It was a natural, so I figured I’d give it a shot. 40 drops of jojoba oil to 10 drops of rosemary oil mixed in a jar. Massaged it into my roots and scalp, left it on for 45 minutes, then shampooed it out.

 

The oils I was using helped with regrowth, but hair would still fall out until I reincorporated soy, whole milk, and added Blackstrap Molasses. It seems that regrowth was stimulated by oils, but the internal stability that prevented hair from falling out again was where the small dietary adjustments were key.
 

listen to your body, always. It often tells you where you need to go. If I had kept on following the auto immune protocol diet without dairy or soy, then who knows how much worse my withdrawal-triggered hair loss would have gotten. I’m so happy that diet works for other people; it just didn’t happen to be the ticket for me.

Edited January 30, 2021 by WiggleIt

[Kristinhopes]

If you don’t mind, if it does not cause ptsd.. can you tell me what your tongue twitches were like? Small hot spots? Frequency? Did your tongue feel strange? What was the twitch like? I am having issues with tongue twitching since doing a poorly thought out prozac bridge even though I am at a low dose. I want off it for many reasons but mostly this reason, but also feel I need to taper extremely slowly due to already feeling withdrawal and severe depression after a less than ten percent decrease.  I too have pelvic and bladder issues which I feel got slightly worse since starting the prizac 6 months ago. You can post it in my thread so

i don’t hijack yours. I am so happy you for you to have gotten better. I still have a long road of tapering and then healing. And I can’t stabilize in the stupid Prozac . It’s not the med that gave me withdrawal , it’s the one I switched to to fix the withdrawal which has not helped and now giving me td type symptoms. But another med change is scary and risky too as well as a fast taper so feel stuck. 

[gdsequoia]

Hi @WiggleIt,

Altostrata has said (in the dystonia thread) the following:

Quote

WiggleIt recovered from dystonia.

Did you fully recover? And how?

 

TIA!

[WiggleIt]

On 5/26/2021 at 12:07 AM, gdsequoia said:

Hi @WiggleIt,

Altostrata has said (in the dystonia thread) the following:

Did you fully recover? And how?

 

TIA!

Hi! No, I did not fully recover from dystonia, but it is MUCH, MUCH better than it was. Most of the time, I look normal to others and I know how to take care of myself to keep things from flaring up. I would say that the amount I've recovered is miraculous, even though it's not total recovery. You would seriously not believe what I looked like 6 or 7 years ago versus how I look now! There is every reason for medication-induced dystonia sufferers to keep up hope <3  

[Rosetta]

Wiggle It,  

 

I’m very curious how to keep dystonia at bay?  Do tell?  What part of your body dies it affect?

 

Rosetta

 

[WiggleIt]

I feel so guilty that I take such long absences from SA. As usual after a long absence, I'll do my best with an update:

My medication-induced dystonia continues to be present, YET it is SERIOUSLY SO MUCH LESS than it was when it first hit me. I still consider my recovery to be miraculous, even though it has not been complete recovery. The fact is that I have remained physically disabled by the WD damage, but I learn to live with it every day, and the recovery I have had is far more than I ever thought would be possible—especially considering how profoundly physically damaged I was by the off-label psych meds. My new life is a good one, but it is NOT as an able-bodied person anymore. I do note suffer from any mental or emotional effects of WD at all anymore. My head and heart recovered totally from WD; my body did not.

Speaking frankly, I was doing better several years ago than I am now. Please don't panic when you read that sentence. No, I have NOT had a recurrence of WD, so don't get scared about that. No, my dystonia has NOT worsened again, so don't get scared about that, either. Physically, I can now "shuffle" (not quite normal walking) one or two blocks in my neighborhood with my cane, and I can lift 2-pound weights with my arms. That may not sound like much, but it is truly miraculous considered how bad my generalized (a.k.a. whole body) dystonia used to be. Because I can now "walk" and "lift weights," it means I do that 3 times a week in an attempt to emulate my workout pattern before psych meds. Before psych meds, I ran, lifted weights, biked, swam, and danced several times a week. Obviously, I can't do that level of activity anymore, but I have worked so hard over the years to increase my physical activity after WD, so I am extremely proud of the 2 or 3 times a week that I manage to shuffle up and down the block, and manage to lift tiny weights. It makes me feel like part of my personality is back!

But it does tire me out quickly, which is part of why I don't come onto SA too much anymore. I'm not out there living a super-normal life again, but I have learned to live a new life, and it is a LUCKY one.

I did a little bit of volunteer work for a while, which was also lovely and helped me feel kinda like "me" again, but I still too have too much constant pain and fatigue (another lingering effect of the psych meds and WD) to meet the demands of a real job. I've tried it a few times and failed, which has left me with mixed emotions: some pride at giving it a try, but lots of humiliation at not having the physical stamina to succeed. 

What has really broken me over the past years, though, is the skin condition I developed on my mouth (exfoliative cheilitis, a.k.a. EC). It has not proven to be curable. It has had very little improvement. What it HAS done is plumb me into depths of depression that basically broke the camel's back. I worked SO, SO hard to come back from WD, and anyone here will tell you—and I'll tell you—how awesome and humbling and blessed my improvements were. I thought I was on the precipice of even greater improvement, then EC struck. And it has decimated much of my joy. It is insult to injury. It is salt in the wound. Seeing my monstrous face every day in the mirror causes indescribable anguish, and I fight every day to push through that anguish. I fight every day to remind myself to be grateful for all my other improvements. I fight every day to distract myself from the sadness of how disgusting my face looks, and has looked, for three years (and counting). That's the real story of why I've disappeared from SA: because I'm still fighting and still pushing forward.

It's so stupid, really. I used to eat mush because my dystonia was so bad that I couldn't chew or swallow. I used to be bedridden from all-over body wiggling. I should be JUMPING for joy, right? But it is devastating to have a facial disfigurement... not to mention that it DOES impede my eating and drinking functions—again, as if I hadn't already dealt with enough of that.

Despite all this, I still advise everyone to hope and to hang on. Why? Because I'd rather be here than not be here. Because there are enough happy things, even if I have to scratch and claw and fight to see them—they're there. So I make myself find the joy, and when I can't find the joy, I can at least find a distraction.

My other HUGE worry right now (but I've burned myself out on typing) is COVID and the COVID vaccine. I WANT the vaccine, but I don't know if it will re-flare my dystonia. And since my dystonia never got 100% cured in the first place, I don't feel the COVID vaccine is a risk I should take. Then again, I sure as hell don't want to risk getting COVID, either. In my state in the US, masks are no longer required, so a bunch of idiots who might be unvaccinated are running around, and I'm so angry at them. People like us, with prior medication damage, may not be able to get the vaccine. I can't protect myself from this deadly illness, even thought I want to, but people who ARE eligible for the vaccine just poo-poo it. The whole thing angers me all over again at the doctor who coerced me to go on off-label psych meds. If it weren't for her and if it weren't for this Godforsaken medication-induced dystonia, I'd be safely vaccinated against COVID already.

I'm really sorry this isn't a happier update. I'm doing my best, and I'm still proud of that, and I still think you all should keep trying, too. Why not, ya know?
  

[WiggleIt]

1 minute ago, Rosetta said:

Wiggle It,  

 

I’m very curious how to keep dystonia at bay?  Do tell?  What part of your body dies it affect?

 

Rosetta

 

Unfortunately, my dystonia came on generalized, which means all over my body. But, luckily, most of my body has gone into remission. For example, I no longer have dystonia in my face or arms or tongue. But I do still get hand twitches, and there's uneven rigidity vs flaccidity in some muscles in my body. The hand twitches feel big, but they actually look so small to the naked eye that a casual onlooker would think I was just moving my hand real quick and wouldn't think it looked medical. And the muscle rigidness isn't visible to the naked eye; it's something I feel and that a physical therapist can feel when they touch me. What IS visible is my dragging leg, but I assume people don't go, "Oh, that's dystonia" when they see me. They probably just think I have a limp, and there are a gajillion people with limps, so I can't imagine that onlookers think too much of it when they see me with my cane.

When I physically overexert myself, my dystonia flares back up, which means that, for me, keeping it at bay requires being very restful. If I "walk" (a.k.a. limp/amble/shuffle) too far or for too long, the D (dystonia) will flare. If I do too many reps with my small weights, the D will flare. If I have a cold or flu, the D will flare. If I take supplements or over-the-counter meds (like Ibuprofen), the D will flare. I try maintain a balance of being lightly active so I can feel happy (and try to be healthy, even if I can't be truly athletic anymore), and I weigh that carefully with rest to avoid messing up my already dystonic muscles. I also have constant pain all over my muscles, and that pain flares up when I overdo things. I assume the muscle pain is from the D.
 

[WiggleIt]

On 10/4/2020 at 7:26 AM, JackieDecides said:

@WiggleIt I came to see how you are doing and you having posted for awhile. Thinking about you and hope things are OK. ❤️

 

Oh, my goodness!  Looks like I owe you a "hello" from October 2020!

[WiggleIt]

On 2/23/2021 at 9:55 AM, Kristinhopes said:

If you don’t mind, if it does not cause ptsd.. can you tell me what your tongue twitches were like? Small hot spots? Frequency? Did your tongue feel strange? What was the twitch like? I am having issues with tongue twitching since doing a poorly thought out prozac bridge even though I am at a low dose. I want off it for many reasons but mostly this reason, but also feel I need to taper extremely slowly due to already feeling withdrawal and severe depression after a less than ten percent decrease.  I too have pelvic and bladder issues which I feel got slightly worse since starting the prizac 6 months ago. You can post it in my thread so

i don’t hijack yours. I am so happy you for you to have gotten better. I still have a long road of tapering and then healing. And I can’t stabilize in the stupid Prozac . It’s not the med that gave me withdrawal , it’s the one I switched to to fix the withdrawal which has not helped and now giving me td type symptoms. But another med change is scary and risky too as well as a fast taper so feel stuck. 

Hi! It does not cause me PTSD to talk about the dystonia, but I do thank you so much for your sensitivity in asking. 

Honestly, I had big AND small tongue twitches. Sometimes, my tongue would protrude completely out of my mouth, totally involuntarily. Other times, it was tiny twitches that actually made it dangerous to eat because my tongue would twitch food into the back of my throat before it was ready to be swallowed. And I had HORRIBLE zaps and needles in my tongue! I'd say it's all 98-99% resolved

[JackieDecides]

On 6/24/2021 at 9:44 PM, WiggleIt said:

it is devastating to have a facial disfigurement... not to mention that it DOES impede my eating and drinking functions—again, as if I hadn't already dealt with enough of that.

 

I am so sorry this is happening, after all your work and progress. 😟

 

On 6/24/2021 at 9:44 PM, WiggleIt said:

I WANT the vaccine, but I don't know if it will re-flare my dystonia. And since my dystonia never got 100% cured in the first place, I don't feel the COVID vaccine is a risk I should take. Then again, I sure as hell don't want to risk getting COVID, either.

 

I can't blame you. I don't know what the answer is. are you on any forums specific to dystonia where people might talk about this? 

 

I'm glad you are able to come back here and hope you never feel bad about not being able to keep up. I can't, and I'm pretty functional. I don't have a smidge of your health problems! 

 

🤗

 

 

 

 

[Altostrata]

WiggleIt, we all love you so much. Thank you for letting us know how you're doing.

[WiggleIt]

On 6/26/2021 at 3:11 PM, JackieDecides said:

are you on any forums specific to dystonia where people might talk about this? 

🤗

 

 

 

 

Such a great question! Yes, I am on several dystonia-specific forums where the COVID vaccine is discussed. From what I have observed on those forums, patients with genetic dystonia have received the COVID vax with no problems or flares, but there is no info from people with medication-induced dystonia. 

[IgotMyselfIntoMess]

@WiggleIt You are a true inspiration. You say you don't consider yourself a success story but I think you are a true success story. I've spent my all day, reading about your story from start to finish. And you are a real warrior, and an example of how resilience can eventually bring healing. I believe that your brain is still healing itself and I hope that you will even get much better in time.

 

I have been also struggling with some movement disorders and muscle rigidity these two antidepressants gave me. They started in the 5th day after I was put on these medications. But since I've never read the medication pamphlet I never understood what was going on with me. And no matter how many times I reported the side-effects I've been having to my psychiatrist, she always brushed them off as a symptom of anxiety.

 

Now for the past 5.5 months, I've been having very rigid muscles. So rigid that it prevents me from doing mimics and even smiling at ease. I always have to force myself. I just wanted to ask you, since you've also experienced medication induced muscle rigidity, have you ever had any experience like this? And over 7 years, how much percentage do you think the rigidity of your muscles improved?

[Elaine5]

Hi @WiggleIt, I am happy to hear you are doing a lot better and still frustrated that you experienced this at all. 
 

in reading your post you mentioned that you healed from the emotional/cognitive isssues caused by withdrawl and I would love to hear more about that. I believe you also explained that most people do heal from those in time. 
 

that is reassuring to me, as some moments the lack of connection to anything and feeling so out of it can be overwhelmingly disorienting and scary. Did you also struggle with anhedonia, emotional anesthesia, depersonalization, etc.? 
 

You are really inspirational and i hope that things continue to get better and better. You definitely made a difference to many on here in sharing your experience as we can see that there were times that you really truly seemed like giving up, but didn’t, and now are doing better- and I’m so happy you are. 

And I’d also like to add, about the disfiguring skin condition, your experiences here and strength and just overall bada^^ nature, mean you are an incredibly beautiful person, no doubt about it. A really beautiful, strong, inspiring, valuable human being. 

 

 

thanks. Xo