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

[UnfoldingSky]

Hi Wiggle, I'm sorry to hear about your infection too.

 

I had a thread around of a list of antibiotics that I found online that were generally considered the safest (for anyone, not specifically people in withdrawal.) I don't know how accurate it is (except it did say the fluoroquinolones are a problem.)  I searched and searched and can't find it.  I don't know if anyone else has seen it lately? 

 

May be you've already made a decision....either way, I hope things improve.  I will be thinking of you. 

 

Take care,

 

US

[WiggleIt]

On 4/16/2019 at 6:01 PM, Frogie said:

Hi:

 

 I’m allergic to anything to do with penicillin. Keflex is in the penicillin family.

 

I know people have problems with z-packs, but all through my taper I never had a problem. It’s synthetic erythromycin.

 

Just my input.

 

Hope you are ok.

 

Take care,

 Frogie xx

 

Thanks, Frogie.  This is helpful.  I was Rx-ed azithromycin, but was told not to take it yet because doc wanted me to try topical first, which is what I'm currently using.  She knows about my dystonia and didn't want me to have a reaction.  I had a staph infection last year and used a topical, but now I have another one this year, and it's unclear if last year's infection truly got eradicated with just the topical.  So not really sure if the topical is enough on this current infection, either.

Tomorrow, I go back to doc to check how the staph and topical AB are doing and to determine whether I need to start the oral antibiotic.  I'm dealing with a lot of self-blame; I feel I did something wrong to get such a filthy infection.  I feel I wasn't clean or careful and am quite hating myself and so scared to become one big Wiggle again.   

[WiggleIt]

On 4/17/2019 at 9:02 PM, Gracee said:

WiggelIt,   Please take this staph infection seriously.    Take recommended antibiotics immediately and do what is prescribed to cure it.  

 

 
I am, promise!  Using a topical antibiotic right now and doctor tells me tomorrow if I also need to take oral one.  If I have to, I will of course.  But I also know it means I may lose my life (metaphorically) to severe dystonia again, and I really don't know how I will live like that.

Edited April 19, 2019 by WiggleIt

[WiggleIt]

1 hour ago, UnfoldingSky said:

Hi Wiggle, I'm sorry to hear about your infection too.

 

I had a thread around of a list of antibiotics that I found online that were generally considered the safest (for anyone, not specifically people in withdrawal.) I don't know how accurate it is (except it did say the fluoroquinolones are a problem.)  I searched and searched and can't find it.  I don't know if anyone else has seen it lately? 

 

May be you've already made a decision....either way, I hope things improve.  I will be thinking of you. 

 

Take care,

 

US

 

Thanks, US! I have a similar list, I think.  I'm on topical antibiotic right now and find out tomorrow about adding oral one.

[WiggleIt]

On 4/2/2019 at 6:21 PM, Carmie said:

Hi Wigglelt, 

 

Just popping around to say I’m thinking of you and sending you some hugs🤗

 

Thank you, Carmie.  I'm trying

[WiggleIt]

On 4/17/2019 at 9:05 PM, JackieDecides said:

 

I'm sorry to hear about the infection, I hope you can get whatever you need to take care of it. I don't know what affects it will have on you but I know you can deal with it. wishing you all the best and hope to hear good news soon. 🤗

 Thank you, Jackie <3 

[WiggleIt]

On 4/5/2019 at 12:56 AM, Leo1983 said:

Hi wiggelt.

 

Are your issues mainly physical now?

 

Have you recovered from alot of the mental stuff?

 

Hope your ok.

 

Leo

 

Hello Leo!

I honestly feel I have 100% recovered from the mental stuff.  Yes, my issues now are physical, solely physical.  Of course, being physically bad off does affect me mentally and emotionally, but the reason I say I'm mentally/emotionally recovered now is because I can handle the sadness of the physical stuff.  Sure, I might cry about my physical health, but I'm not afraid of my mind or my heart anymore at all.  If anything, I am grateful to God that He's made my mind and heart strong to help me cope with the physical ailments.  I pray that He has mercy and carries me through what I'm dealing with now.

I hope it's not all soppy for me to invoke God.  I usually don't, because it's not my way to be preachy or public about my beliefs, but since I'm a little battered right now, I'm being a bit more expressive about my belief. 

[UnfoldingSky]

22 minutes ago, WiggleIt said:

 

Thanks, US! I have a similar list, I think.  I'm on topical antibiotic right now and find out tomorrow about adding oral one.

 

Hi Wiggle, I hope it all goes okay.  I was on a topical one as well recently, and might have had a staph issue too (long story).  I'm sorry to read you are feeling pretty battered too as you mentioned elsewhere..don't worry about invoking God I'm sure many people understand here. 

 

 

[WiggleIt]

14 minutes ago, UnfoldingSky said:

 

 (long story). 

 

Aren't those the only kind we have?  Ha ha ha!!!

[Leo1983]

Hi Wigglett

 

Did you have all of the psychological stuff? Anxiety, morning cortisol, Anhedonia, emotional numbing, head pressure etc etc?

 

If so did it all go away on its own??

 

Thanks for your time.

 

Leo

[WiggleIt]

Just now, Leo1983 said:

Hi Wigglett

 

Did you have all of the psychological stuff? Anxiety, morning cortisol, Anhedonia, emotional numbing, head pressure etc etc?

 

If so did it all go away on its own??

 

Thanks for your time.

 

Leo

Oh goodness, I had all that and MORE, and now I feel so mentally stable and capable

It went away with time and rest and light-hearted distractions (by which I mean mostly Netflix).  

[UnfoldingSky]

22 minutes ago, WiggleIt said:

Aren't those the only kind we have?  Ha ha ha!!!

 

Yeah really, I have a few essays...😄

 

I can remember more than a few doctors trying to interrupt me at minute forty five to get a word in...little did they know I was just getting started ha ha

[JackieDecides]

6 hours ago, WiggleIt said:

I hope it's not all soppy for me to invoke God.  I usually don't, because it's not my way to be preachy or public about my beliefs, but since I'm a little battered right now, I'm being a bit more expressive about my belief. 

you invoke anyone you like! 

in the depths of despair, I often do and I feel nothing and nobody there. but I believe anyway, and feel the "nothingness" is a lack in my own brain that is hopefully temporary. in other words, I hope to eventually be able to believe better just like I hope to think and imagine better. 

bless us all in whatever way makes sense! ❤️

[Frogie]

18 hours ago, WiggleIt said:

 

Thanks, Frogie.  This is helpful.  I was Rx-ed azithromycin, but was told not to take it yet because doc wanted me to try topical first, which is what I'm currently using.  She knows about my dystonia and didn't want me to have a reaction.  I had a staph infection last year and used a topical, but now I have another one this year, and it's unclear if last year's infection truly got eradicated with just the topical.  So not really sure if the topical is enough on this current infection, either.

Tomorrow, I go back to doc to check how the staph and topical AB are doing and to determine whether I need to start the oral antibiotic.  I'm dealing with a lot of self-blame; I feel I did something wrong to get such a filthy infection.  I feel I wasn't clean or careful and am quite hating myself and so scared to become one big Wiggle again.   

You did nothing to deserve this infection at all!

 

I hope the topical AB works. Sounds like it would be a lot easier on the system.

 

Good luck with the dr tomorrow. Let me know what you find out.

 

Take care,

 Frogie xx

[JackieDecides]

yes, I meant to say that, too. you did nothing to deserve or get this infection! it's just something that happens. 

 

hoping to hear good news from your doctor's appointment. 🤗

[puthappinessfirst]

Hi Wiggle,

 

Just wanted to say my first Hello to you ❤️ 

And offer some support. Especially in regards to your EC. 

 

When I was a kid I had horribly sensitive skin. ESPECIALLY my face/lips. 

I'd go out in the sun, swim, do whatever kids do, and my lips would dry and crack and become so red and inflamed. 

Sometimes I looked like a duck with lipstick. 

The doctors said it was eczema, but it was so, so severe and painful. 

 

I could hardly open my mouth for the dentist at some times, they'd have to slather on the vasoline every 5 mins to help my skin be more flexible. 

I would get cracks at the corners of my mouth too. 

 

So you're not alone. I haven't had these issues in a very long time, but I know how sad, painful, and embarrassing these issues can be. 

All my love.

[WiggleIt]

On 4/26/2019 at 5:00 PM, puthappinessfirst said:

Hi Wiggle,

 

Just wanted to say my first Hello to you ❤️ 

And offer some support. Especially in regards to your EC. 

 

When I was a kid I had horribly sensitive skin. ESPECIALLY my face/lips. 

I'd go out in the sun, swim, do whatever kids do, and my lips would dry and crack and become so red and inflamed. 

Sometimes I looked like a duck with lipstick. 

The doctors said it was eczema, but it was so, so severe and painful. 

 

I could hardly open my mouth for the dentist at some times, they'd have to slather on the vasoline every 5 mins to help my skin be more flexible. 

I would get cracks at the corners of my mouth too. 

 

So you're not alone. I haven't had these issues in a very long time, but I know how sad, painful, and embarrassing these issues can be. 

All my love.

Thank you.  I'm in lousy shape.

Did you get, like, huge crusts that would build up?

[WiggleIt]

I''m sorry to all for my absence.  Not well.  I so enjoy helping others, and just am unable to currently, but look forward to when I can again.  Stay strong, everyone.

[Gridley]

@WiggleIt Sorry you're not feeling well, WiggleIt.  Take care of yourself.

[Frogie]

1 hour ago, WiggleIt said:

I''m sorry to all for my absence.  Not well.  I so enjoy helping others, and just am unable to currently, but look forward to when I can again.  Stay strong, everyone.

Get to feeling better. Take care of yourself 1st. I’m sorry you are in a bad way. 

 

Take care,

 Frogie xx

[JackieDecides]

4 hours ago, WiggleIt said:

I'm in lousy shape.

Did you get, like, huge crusts that would build up?

 

4 hours ago, WiggleIt said:

Not well.

 

 

I'm so sorry to hear things aren't going well, WiggleIt, and I wish there was something we could do to help.  at the very least, you should know many of us - including me - have been helped tremulously by your words and we wish you all the best. 🤗

[puthappinessfirst]

On 5/20/2019 at 4:45 AM, WiggleIt said:

Thank you.  I'm in lousy shape.

Did you get, like, huge crusts that would build up?

 

I didn't get thick crusts, but I did have some of that at the corners of my mouth. For me, I had bright red, raw skin that radiated about an inch out from my lips to my face. It was incredibly embarrassing and painful. 

[WiggleIt]

Hello All,

It's been a lousy spring and summer.  In addition to EC and recurring staph on my lips since 2018, I also re-herniated a disk in my back and am suffering such excruciating sciatic pain that I can't get into an non-painful position to type and haven't been able to for months.  Unfortunately, my phone is old and lousy, so accessing this site on my phone is not an efficient option.  That's why I have not been around.

I need a steroid injection into my back, but I fear re-flaring the dystonia that I've been so lucky has improved so much over the years.

Also, topical ABs are no longer cutting it for my recurring staph infections, so I'll probably need to take oral ABs if I get another infection.  Same problem: ABs  could bring back my dystonia and/or my WD symptoms.

I have no idea what will happen to all my years of dystonia recovery and psych med recovery if I get a back injection and if I go on ABs.  This is a problem we will all face sometime after WD.  Life goes on, and things happen.  At some point, we'll have to engage in the medical system again, and we'll have to see how it goes.  Whatever treatment(s) I get, I'll let you all know how my body reacts, because I'm sure the info will be useful here.

I will post updates as I'm able, and will be back to mod when my pain allows me to regularly type again.  At this point, it hurts to stand, lay, or sit.

Sorry to have gone radio silent, especially as I care about everyone here and want to help!

Ugh, my sciatic pain is shooting up, so I must log off.

Edited July 8, 2019 by WiggleIt

[Leo1983]

Hi

 

Just wondering about your post.

 

What i read is you recovered from wd however, did not look after your body?

 

in what way? 

 

Regards

 

L

[ChessieCat]

58 minutes ago, Leo1983 said:

Hi

 

Just wondering about your post.

 

What i read is you recovered from wd however, did not look after your body?

 

in what way? 

 

Regards

 

L

 

Please go back and read through WiggleIt's posts.  It's obvious from what she has posted that she's currently not in any condition to be responding to your questions.

[manymoretodays]

Miss you WiggleIt.  And hugs.  And yes, please keep us updated.

 

Love, peace, healing, and growth,

mmt

[Gridley]

20 hours ago, WiggleIt said:

Ugh, my sciatic pain is shooting up, so I must log off.

 

My heart and love and prayers go out to you, Wigglelt.  You are a beautiful soul.  No need to reply..

[wantrelief]

I was very sad to read about everything you are going through, WiggleIt.  You are such an amazingly strong woman. I am really hoping you get some relief very soon.

[JackieDecides]

so sorry to hear about all the pain and, as Gridley says, no need to reply. ❤️

[WiggleIt]

Hello All...

Thank you so much for your patience with my disappearance.  I've spent months practically immobile and needing a lot of help in the home with basic tasks.  I herniated a disk in my back and, in addition to being immobilized from pain, I've also been grappling with a lot of self-loathing and fear.  The self-loathing came because I blamed myself for the disk hernia.  I thought I'd pushed my drug-damaged body too hard, that I'd been too careless with my dystonia, etc.  I thought it was my fault that I was bedridden again.  But... it wasn't, and it isn't.  If anything, it was brave of me that I felt better and wanted to do more.  Besides, otherwise healthy people herniate their backs ALL THE TIME.  But I blamed myself because I know my body has limits, yet I pushed past them.  However, I HAVE to consider that it might have been a good thing that, after all these years of drug damage, I finally felt strong enough to push myself much farther.  I mean, turns out I shouldn't do that again, LOL, but... whatever.  Now I know.  

The fear I've been dealing with is because I was too scared to get a steroid injection into my back, which is the standard treatment for hernias as bad and painful as mine.  I just couldn't pull the trigger.  I was so scared of having an adverse reaction, of God-knows-what happening. And so, I've just been white-knuckling it through a bad hernia and immobilizing sciatic pain for months.  I couldn't sit at my computer, couldn't sit at all.  Couldn't sleep in a bed.  Couldn't turn my head or neck.  The pain's been so bad I've almost vomited on myself several times.

I honestly don't think that a healthy person could have survived the pain.  But I think that people who have been through WD... well, we're tougher than normal people.  

Also, I don't have a job or anything that I have to go to, so I didn't have to force myself to get the injection and snap back to a routine.  I had the "luxury" (if you call being disabled a luxury) to be at home for months waiting to improve.      

I'm easing back into physical activity and easing back into typing, sitting, etc.  Technically, this was a re-herniation of a smaller hernia that I had years ago, and yes, the muscle weakness of my dystonia did make me a bit more susceptible.  My doc thinks the weakness/dystonia was only a small factor.  I think it was a big factor, because I lived with the original, small hernia unproblematically for several years before psych meds ruined my muscles.

In the end, what matters is that I'm getting better and, hopefully, I'll never have to get the steroid injection.

The horrible EC (exfoliative cheilitis) on my lips is still there.  I've no hope for that healing ever, but you play the hand you're dealt.  I've been dealt a sh***y hand.  So I just pile on more eye makeup these days and slap a flu mask on my face.  Let it look like Halloween year-round.  Not much else I can do.  (Really, though, I hope God has mercy and cures it.  I'm pretty weak-spirited and not dealing well with a skin deformity on my face.  My family is convinced this is bc of the meds, too, but I'm not sure they're right.)

I'm sad, but not sad, if that makes sense.  I was better two years ago, but I can't keep dwelling on that.

I hope I didn't freak anyone out.  Like I said, I was in lots of pain and blaming myself for it.  Now that I'm improving, I hope I can help people again.

[JackieDecides]

I'm sorry you've been having such a horrible time and glad it's improving. Coming here to help others is hopefully helping you, as well, and I've read your wise words enough in the past to know your posts are worth reading. 

 

I hope you keep improving! 🤗

[ShiningLight]

💜 WiggleIt 💜

 

I found your thread while searching this site on dystonia. I cry reading your story because you have suffered so unfairly. These are also tears of admiration, for your courage is so inspiring. You have an indomitable spirit.

 

I had chorea from acute gabapentin withdrawal, and I have dystonia, originally from zoloft. The dystonia appears to be slowly worsening either with time or with continuing gabapentin withdrawal. Regarding movement disorders, there is stigma and I do believe often a social *assumption* of cognitive problems for those of us with movement disorders, ie people assume we are stupid.

 

I hear you re fear of antibiotics and medical treatment in general. I had c diff infection twice which already had me terrified of antibiotics, and now in withdrawal, I am even more afraid of antibiotics than I was in the past--if that's even possible. Every flu season except one in my life, I get a sinus infection complication and end up on antibiotics. This year I will be wearing a mask all flu season. I am not looking forward to the social repercussions of that, but I do think it's more awkward feeling for the wearer than it is for those around them.

 

The invisible withdrawal symptoms and the visible impairments each have their own unique problems and impact.  

[Carmie]

How are you doing Wigglelt?💚

[composter]

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.

[Melissa5000]

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! 

[Leo1983]

@WiggleIt

 

Hi,

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

 

Keep Safe

 

Regards

 

Leo