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WiggleIt

WiggleIt: Tardive Dyskinesia from TCAs and benzo rapid tapers

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WiggleIt
On 6/7/2018 at 4:03 PM, Altostrata said:

WiggleIt, how are you? I think of you often. I hope you are still making progress in recovery.


Hello Alto!!

 

Oh, how lovely to see a message from you.  Well, I must be honest that I was better in February than I am now.  March saw the invasion of a new problem into my body, and I have to wonder if my body is still reacting unstably because of my history of psych med damage, or if it's possible that my new problem is unrelated.  Regardless, the new problem is extremely depressing and is affecting my ability to eat.  I'm doing a lot of liquid meals again.  Plus, the new problem is visually embarrassing and gross-looking, so I'm spending the majority of my time isolated.  Ironically, my mobility is good, which makes the new problem even more depressing.  I'd so been looking forward to challenge myself to do more PT this summer.

It seem I can't catch a break.  If my dystonia is mild and my mobility is good, then it just seems that some other thing will pop up to ruin my health.  This new problem is the first time I've been able to say that the problem might not be from psych meds... maybe.  Truly, everything else about my body that's been wrecked is absolutely so obviously the result of psych meds, and my family agrees.

But I still am grateful.  I mean—my God—I wiggled all day, every day, for months.  A year, maybe?  I was in a wheelchair.  Then I was on a walker.  Now, I can make do with just a cane.  I can go out into the sun.  I can listen to music.  I have so much that I didn't used to have, that I thought I'd never have again.  It's not lost on me how bad I was and how much I've improved.  It's also not lost on me that others who developed medication-induced actually took their own lives, but that I have been lucky to live.  None of those things are lost on me.  But I can't say that it's not emotionally and mentally exhausting to always be dealing with One More D*** Thing when it comes to my body.  It's truly never-ending, and when I fret and ask why something is happening to me, sometimes my family are the ones to gently remind me, "Hey, Wiggle, it's because of what the meds did to you, but we pray that you'll get through this the way you've improved from all the past damage."

Alto, I am still awash with gratitude when I come back to this page.  The work you do in the world is absolutely invaluable.  This community is invaluable, and your capacity to keep being a mod here is invaluable.  I haven't done anything like that for this world.  Thank you.

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WiggleIt

My random update that I post every few months!  Let's see... It's July 2018, and my last update was Feb. 2018.  For those who are new to my thread, please know that I came off meds in 2014.  It was a dual CT of benzos and TCAs.

Well, I'm less healthy and more depressed than I was in February.  For those who've followed my story here, you know that I have improved IMMENSELY, but that I've never physically recovered completely.  That assessment still holds true today.

In March 2018, just about a month after my last update, some new problems hit the fan.  I took an amino acid supplement (lysine) and suffered a huge dystonia attack all over my body.  It had been a full year since a dystonia attack had hit me that badly, and this one that hit in March 2018 was BAD.  It was almost as bad as the dystonia attacks (a.k.a. dystonic storms) I used to suffer four years ago.  It was an unpleasant reminder that, although my body has come a long way, it's still not a normal body.  I do still have to treat it so gently.  It's so easy to fool people who only see my on my good days.  They have no idea what it takes for me to leave my house, nor do they know how much I need to recover afterward.  But you know what the good part is?  I CAN LEAVE MY HOUSE AND SOCIALIZE.  Who cares if it's not a "normal" life with "normal" social and professional activities?  It's a life again, whereas four years ago I didn't have any quality of life at all.  I see friends maybe once every two months, but I swear it's enough for me to feel blessed and lucky and joyous.

Also in March, I developed a problem with my lips (that's still happening) called exfoliative cheilitis.  It's absolutely disgusting.  I don't know why it's happening.  I don't know if it got catalyzed by cold sores, or if it got catalyzed because I've always picked at my lips, or if maybe the medication-induced damage left over in my body gave it the chance to take hold.  I just don't know.  But I do know that it's gross, makes my face look deformed, that it's potentially chronic and uncurable, and that it's keeping me isolated.  Then again... God's seen me through a lot of medical hell, and maybe he'll take pity on my again.  Maybe this will go away, and maybe so will my Fordyce spots that are supposedly permanent.

Anyway, despite the bad stuff that always rears its ugly head to remind me that my body's broken, I can honestly say that my heart and mind are no longer broken.  And even though my body's still broken, it's BETTER.  Lots.

Please hang in there, everyone.  It's worth holding on through this fight.  It's worth it.   

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LexAnger

Such a great update wriggleit! You are a true hero!

thanks for sharing your progress! I'm so happy to hear you improved immensely! 

 

I started having generalized dystonia simce 10 months off lex and 3 months off aspartame ( had a severe reaction to it and I truly believe it caused or at the least triggered the dystonia). 

 

I hope your recent dystonia attack is leaving! This is the most disturbing and agitating sxs to me.

 

Lex

 

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manymoretodays

Hi WiggleIt,

 

And oh.......I can hear your frustration.  I remember you from my earlier days, when I first arrived here at surviving.  And believe me you were a help to me at that time.  So many thanks to you.

I posted this link on my own update today, because sometimes I need an outlet myself............ and maybe it will help to do some emotional verbal/typed expression.

Lalochezia! The cursing thread

 

Love, peace, healing, and growth.......hugs as well,

mmt

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WiggleIt

________________________________________

MOD NOTE:  Possibly triggering content.

________________________________________

 

Been doing poorly since March.  Am positive that the antidepressants contributed to the horrible epidermal lip deformity I now suffer called exfoliative cheilitis (EC).  Docs also think maybe it could be erosive oral lichen planus.

Dystonia has been manageable, but life is still ruined.  

My last message was filtered out because of cursing.

I hate the doctor that did this to me.  I hate the meds.  

I am extremely suicidal due to the mouth deformity.  Have found no cured cases of EC online.  Wish I were dead.  This is my life 4 years off meds: still not worth living.  I wish I were dead.  The hell never ends. 

Edited by ChessieCat
note

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WiggleIt

As always, I'm grateful for this forum and for Alto.  

Wishing everyone peace.

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manymoretodays

Hi WiggleIt,

 

It's possible......that..... the AD's contributed to the EC.  Most likely.    And I don't blame you for your anger at all.  Especially as what you have going on.......does effect your appearance.  Add in........that no one seems to take responsibility for the changes incurred and at the very least........offer an apology for.  I get it WiggleIt.  I mean I can't fully relate exactly to what you have experienced post A/D's and other medications.........yet, my own moving on through the aftermath knows.......how........unbearable........it.........can........seem sometimes.

 

I don't think that you are alone in your feelings.  Not here.  And hopefully not on the ground.  I don't know your living situation, and support situation.........I'm hoping that you have some support there though.    I'm sending all the healing thoughts and prayers and hugs that I can through the www web, such as it is. 

For me, always.......what I thought I could not bear in the past.........has become bearable and even manageable.  So I just implore you to hang on now.

 

I often use what is called a "warm line" here.  Here's my post on that:  my warmline post 

I'll send you a PM as well, with a number you can call here in my state.  They do take out of state calls, if you don't have the same in Colorado.

I've also heard that some members have had good experiences with the good Samaritans........just to call and talk. 

Here's the link on that one as well.  For those who are feeling desperate or suicidal 

 

Oh WiggleIt,  I wish you great peace as well........and comfort for your sorrows and pain.

Love, peace, healing, and growth,

mmt

I'm serious too, as to what I said before.........reading some of your posts and interactions here........when I first arrived............when you posted more often..........were helpful to me.

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Survivor1

Hi WiggleIt,

 

I am so sorry you are going through this.  Had to google cheilitis; wow, what a terrible thing to have to endure after all you have been through.  I don't know what to say other than I hope that you find the strength to hold on.  My thoughts are with you.  Best wishes.

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WiggleIt
5 hours ago, manymoretodays said:

Hi WiggleIt,

 

It's possible......that..... the AD's contributed to the EC.  Most likely.    And I don't blame you for your anger at all.  Especially as what you have going on.......does effect your appearance.  Add in........that no one seems to take responsibility for the changes incurred and at the very least........offer an apology for.  I get it WiggleIt.  I mean I can't fully relate exactly to what you have experienced post A/D's and other medications.........yet, my own moving on through the aftermath knows.......how........unbearable........it.........can........seem sometimes.

 

I don't think that you are alone in your feelings.  Not here.  And hopefully not on the ground.  I don't know your living situation, and support situation.........I'm hoping that you have some support there though.    I'm sending all the healing thoughts and prayers and hugs that I can through the www web, such as it is. 

For me, always.......what I thought I could not bear in the past.........has become bearable and even manageable.  So I just implore you to hang on now.

 

I often use what is called a "warm line" here.  Here's my post on that:  my warmline post 

I'll send you a PM as well, with a number you can call here in my state.  They do take out of state calls, if you don't have the same in Colorado.

I've also heard that some members have had good experiences with the good Samaritans........just to call and talk. 

Here's the link on that one as well.  For those who are feeling desperate or suicidal 

 

Oh WiggleIt,  I wish you great peace as well........and comfort for your sorrows and pain.

Love, peace, healing, and growth,

mmt

I'm serious too, as to what I said before.........reading some of your posts and interactions here........when I first arrived............when you posted more often..........were helpful to me.


Really?  My posts were helpful to you?  I'm... I'm speechless.  I would have sworn that my posts were scary and discouraging.  I didn't intend them to me; I just can't bear to lie about the truth of what these medicines do to people.  We do get better, it's true.  But I'm not back to normal.  I'm not who I was, and THAT'S the person I want back.

I had made so much progress.  I'd been looking SO forward to this year.  And now... this horrible deformity on my mouth (exfoliative cheilitis, EC).  It's so difficult, so, so difficult.  It looks gross.  It looks like a disgusting disease, but the horror doesn't stop there.  It interferes with my ability to eat, drink, talk, brush my teeth, wash my face, etc.  I struggled so badly to regain my ability to chew and swallow after the pills, and now I'm back to struggling with food because of these disgusting crusts on my lips.

I can't help but suspect that the pills played a major part in destabilizing my body and making it vulnerable to this illness/deformity on my mouth.     

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WiggleIt
1 hour ago, Survivor1 said:

Hi WiggleIt,

 

I am so sorry you are going through this.  Had to google cheilitis; wow, what a terrible thing to have to endure after all you have been through.  I don't know what to say other than I hope that you find the strength to hold on.  My thoughts are with you.  Best wishes.


Thank you, Survivor1.

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Rbvdk

Hi Wigglelt, I hope you're doing well. :) I hope it's ok to message you here as I'm struggling so much with PGAD which seemed to have appeared a few days before then got better, then during and now worse after my period. It feels so sensitive to touch my clit and I had a random vaginal orgasm sensation (without the muscle contractions) out of nowhere yesterday as well as a ton of discharge. I'm too scared to leave my bed now and I'm feeling horrible.

 

I'm feeling so alone and I've posted in a few places on this forum but it suddenly seems like no one is here and I feel like I'm left suffering alone. :( I've been on citalopram for almost 4 years (had a 3 month break and also counting the low doses of reinstating and tappering) and it's been 5 months since I got to 0. I feel my PGAD has built up very very slowly in these months and I'm scared because it seems everyone who recovers from PGAD are usually people who developed it just weeks after withdrawing and who haven't been on Antidepressants as long as I have. :(

 

You said you had is several months after withdrawing, if you remember exactly, how many months was it? And do you know how long until it stopped? I'm also scared of that 6 month mark.. I was looking through this thread by the way which was so relatable. I used to be so sympathetic but now I just feel so angry towards people who complain when they don't have physical problems, just cliche ones that they seem to want and choose to have.

 

I haven't really been able to talk to anyone who had or has PGAD and you give me hope and you seem so nice and relatable. So I hope we can message whenever you can! 

Take care ❤️

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WiggleIt
On 10/25/2018 at 3:42 AM, Rbvdk said:

Hi Wigglelt, I hope you're doing well. :) I hope it's ok to message you here as I'm struggling so much with PGAD which seemed to have appeared a few days before then got better, then during and now worse after my period. It feels so sensitive to touch my clit and I had a random vaginal orgasm sensation (without the muscle contractions) out of nowhere yesterday as well as a ton of discharge. I'm too scared to leave my bed now and I'm feeling horrible.

 

I'm feeling so alone and I've posted in a few places on this forum but it suddenly seems like no one is here and I feel like I'm left suffering alone. :( I've been on citalopram for almost 4 years (had a 3 month break and also counting the low doses of reinstating and tappering) and it's been 5 months since I got to 0. I feel my PGAD has built up very very slowly in these months and I'm scared because it seems everyone who recovers from PGAD are usually people who developed it just weeks after withdrawing and who haven't been on Antidepressants as long as I have. :(

 

You said you had is several months after withdrawing, if you remember exactly, how many months was it? And do you know how long until it stopped? I'm also scared of that 6 month mark.. I was looking through this thread by the way which was so relatable. I used to be so sympathetic but now I just feel so angry towards people who complain when they don't have physical problems, just cliche ones that they seem to want and choose to have.

 

I haven't really been able to talk to anyone who had or has PGAD and you give me hope and you seem so nice and relatable. So I hope we can message whenever you can! 

Take care ❤️


Hello Rbvdk!

I am HAPPY chat with you here!  Thank you for saying I seem nice and relatable.  I would never guess that about myself, because I feel like I'm always on here complaining about some new ailment, even though I know I have had lots of improvement in several areas (but never back to normal).

Anyway, I kept detailed notes of my side effects as I went through WD, but I haven't looked at the notes to be able to give you an exact timeframe of when the PGAD started, so I'm going to work from approximate memory here.  I do recall that it had a delayed onset, and I was STUNNED when it appeared.  I want to say that it hit me around 5 or 6 months off meds.  It lasted severely for maybe 3-6 months on and off;  the occurrences were not every day, but they weren't rare, either.  I'd say maybe a few times a week, for hours at a time.  Then for about another year, I would get it around my periods, but not with every period, and always a little less severe each time.  So I think I dealt with it for 1.5 years approximately, but it seemed milder each time it struck.  It was when it first hit that it was horrendous... and humiliating.  My family knew I was bedridden for so many reasons, but it was humiliating the first time I told them I couldn't walk because of electrical PGAD.  I thought they were going to die of grief when I saw my parents' faces and explained to them the new sensation that my body was doing to me.

BUT!  Now the good news: My PGAD is gone now.  I've had maybe 1 or 2 random mini-episodes in the past couple of years, and they lasted only a few seconds, not even minutes.  To give you a better summary, that means I've been off meds four 4 years, and it was 1.5 years of PGAD.

PGAD is wildly awful, both for men and women, but I have not seen a case of permanent PGAD in these support groups.  Yes, I've seen some last for years.  But I really can't recall any permanent cases off the top of my head, so I hope and pray that you will be healed of this—and I have good reason to believe you will.  
 

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WiggleIt

Dear SA pals at large,

Well, I am still suffering from the severe, deforming exfoliative cheilitis on my mouth, and have also battled cold sores and a staph infeticon on my lips that have contributed to the deformity.  It will be no surprise to any of you that I blame the meds for this, despite being 4 years off.  The fact is that my physical health has never returned to normal.  The fact is that nobody else in my family has these strange ailments, so there are little to no other potential causative factors in my life or genes to explain my ill adulthood health.  The meds are the only explanation.

I now cover my face to leave the house, so that people don't stare at my deformed, crusted lips.  I RARELY leave the house anymore.  Only for EXTREME necessities.  It's devastating to have something wrong with your face, and I'd rather be alone and remain unseen, except by family.

Strangely, I've become accustomed to this forced isolation.  I'm actually proud of how I've eventually learned to handle it throughout the year.

Am I fully healed from psych meds?  No.  Will I ever be?  In my case, there is very little reason to think I will ever fully heal.  But what I do have right now is strength to keep going.  Please, you all keep going, too.  And lift up Monica's words every day: It gets better.    

Thank you as always to Alto.  This space here is everything to me.

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Rbvdk
1 hour ago, WiggleIt said:


Hello Rbvdk!

I am HAPPY chat with you here!  Thank you for saying I seem nice and relatable.  I would never guess that about myself, because I feel like I'm always on here complaining about some new ailment, even though I know I have had lots of improvement in several areas (but never back to normal).

Anyway, I kept detailed notes of my side effects as I went through WD, but I haven't looked at the notes to be able to give you an exact timeframe of when the PGAD started, so I'm going to work from approximate memory here.  I do recall that it had a delayed onset, and I was STUNNED when it appeared.  I want to say that it hit me around 5 or 6 months off meds.  It lasted severely for maybe 3-6 months on and off;  the occurrences were not every day, but they weren't rare, either.  I'd say maybe a few times a week, for hours at a time.  Then for about another year, I would get it around my periods, but not with every period, and always a little less severe each time.  So I think I dealt with it for 1.5 years approximately, but it seemed milder each time it struck.  It was when it first hit that it was horrendous... and humiliating.  My family knew I was bedridden for so many reasons, but it was humiliating the first time I told them I couldn't walk because of electrical PGAD.  I thought they were going to die of grief when I saw my parents' faces and explained to them the new sensation that my body was doing to me.

BUT!  Now the good news: My PGAD is gone now.  I've had maybe 1 or 2 random mini-episodes in the past couple of years, and they lasted only a few seconds, not even minutes.  To give you a better summary, that means I've been off meds four 4 years, and it was 1.5 years of PGAD.

PGAD is wildly awful, both for men and women, but I have not seen a case of permanent PGAD in these support groups.  Yes, I've seen some last for years.  But I really can't recall any permanent cases off the top of my head, so I hope and pray that you will be healed of this—and I have good reason to believe you will.  
 

 

Wigglelt thank you so much for replying to me! What you had sounds like the very mild PGAD I had at the 6 or 7 month mark of withdrawing but mine was so rare I didn't even realise it was PGAD until now (which is funny how slow I was to realise that when I was terrified of it that whole time lol). The annoying thing is I can't be 100% sure which part of my withdrawals caused it. I CT'd 30mg in August, went back on and CT'd again in September. Then I went back on them in December and the PGAD started in March.. Maybe it was just a mix of all those things that caused it? My first one was the worst and lasted maybe 3 hours, it came in slow intense waves. The second was 3 months later, it was as bad but only 1 hour long. Then I've had about maybe 5 much milder and very short ones since and they were also months apart. My last one was the most mild but lasted about an hour or more and I'm putting that down to the fact I hit 0mg again (cos I've withdrawn again) just a month before. What I'm getting feels very different and I'm wondering if it's actually just stress and tension-caused rather than the withdrawals. I'm almost at the 6 month mark though and dreading it massively lol. I'm hoping my withdrawal PGAD will continue to be mild and short (or completely gone!) And not be distrubed by my new withdrawals.. Sorry I'm going on now lol 

 

Thank you so much everything you've said has given me so much reassurance. Also I am so sorry about your mouth, I really hope you heal very soon. You're doing amazing, you've already gotten through the absolute worse and you can get through this too, you're strong and a huge inspiration to us all! ❤️

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WiggleIt

Dear Rbvdk,

When more than one med is involved—as is the case for most of us—it's nearly impossible to say which pill caused what, but we know for sure that the pills did this to us.  In my opinion, stress and tension wouldn't cause PGAD; or, if stress and tension could cause PGAD, those cases would be extremely rare.  Much more rare than PGAD from psych pills.  If you didn't have PGAD in your life before meds, then, in my opinion, it's a clear sign that the meds caused the PGAD.  

In my view, the fact that your PGAD is episodic seems like a good sign.  A physical therapist once told me, "If you have moments where you're pain-free, then it means you CAN be pain-free all the time.  It's just a matter of figuring out how."  I'm confident that your PGAD will completely disappear as your body heals more and more, and please know that you can ask me anything anytime!

Sorry I keep using the phrase "in my opinion" so repetitively!  I don't want to act like a huge expert over other people's bodies, even though I do feel expertise talking about my own body :)

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JackieDecides
On 11/3/2018 at 3:54 AM, WiggleIt said:

I am still suffering from the severe, deforming exfoliative cheilitis on my mouth, and have also battled cold sores and a staph infeticon on my lips that have contributed to the deformity.  It will be no surprise to any of you that I blame the meds for this, despite being 4 years off.

 

I am so sorry to hear you are still having such major problems and that you are not comfortable leaving home. despite your report that you are  doing well at it - and using your time for posting here and helping others! - it's heartbreaking to think of you not going anywhere for fun. do you at least have a yard, so as to be outside? 

 

I so appreciate your comments on my thread. 😍

 

Jackie

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JackieDecides
On 9/22/2018 at 1:50 AM, WiggleIt said:

I am extremely suicidal due to the mouth deformity.  Have found no cured cases of EC online.  Wish I were dead.  This is my life 4 years off meds: still not worth living.  I wish I were dead.  The hell never ends. 

☹️

 

I hope you are feeling better now? or at least not constantly feeling this bad? 

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WiggleIt
11 hours ago, JackieDecides said:

☹️

 

I hope you are feeling better now? or at least not constantly feeling this bad? 


Thank you so much for asking!  No, I am no longer feeling suicidal due to the mouth deformity.  I pushed past that feeling.  I am severely depressed about the mouth/skin deformity on my lips, dysfunctionally depressed, but I will not take my life over it.  Thank you again <3

I do have a yard, and I spent a lot of time in the sun in my backyard over the summer.  It's cold now, so I'm indoors, but I spend a lot of time with my family, so it's okay.  Today, I broke down crying in the middle of the day because of my mouth, and my parents just hugged me until I was all cried out.  It's not an ideal life, but it's full of blessings that a lot of other people don't have, so I just try to be as happy as I can in my little cave. 

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JackieDecides

sometimes all we can do is be glad it isn't worse: I'm glad you have your family and a yard, besides, WiggleIt.  I need to go to work so I'll be back later. 😇

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Altostrata

WiggleIt, you are so brave. I am sorry you are still suffering so.

 

Some of these conditions are aggravated by sunlight, -- check with your dermatologist, you may want to put a good, strong hypoallergenic sunscreen on your lips. I have sensitive skin and I use Vanicream products, or you might be able to use good old zinc oxide ointment (it's white -- for the backyard).

 

Was this diagnosed with biopsy, swab of cells, or blood test? It sounds like your immune system may be a little wacky, have you seen an immunologist?

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WiggleIt
On 11/9/2018 at 1:32 PM, Altostrata said:

WiggleIt, you are so brave. I am sorry you are still suffering so.

 

Some of these conditions are aggravated by sunlight, -- check with your dermatologist, you may want to put a good, strong hypoallergenic sunscreen on your lips. I have sensitive skin and I use Vanicream products, or you might be able to use good old zinc oxide ointment (it's white -- for the backyard).

 

Was this diagnosed with biopsy, swab of cells, or blood test? It sounds like your immune system may be a little wacky, have you seen an immunologist?


Alto, it's so good to hear from you!  And thank you.  Yes, I am still suffering, but I have also made great improvements.  I don't wiggle all day long anymore, I can drive to places close to my house, and I can use a cane for most occasions instead of my walker.  I can chew and swallow solid foods (not as smoothly as before meds, but definite improvement in my throat muscles nonetheless).  I rarely, rarely ever feel vibrations inside my body anymore.  So although I am still suffering, I do feel it's appropriate for me to encourage others here because I have survived and improved from a lot of the symptoms they are having.

Yet I don't write a recovery story because the fact is that I'm still quite disabled.  

The exfoliative cheilitis on my mouth prohibits me from eating normally, meaning that even though my throat muscles improved over the years, I now need to go back to liquids frequently because the crusting on my lips prevents me from opening my mouth normally.  I've also been unable to visit a dentist because they can't work around my crusted lips.

I always cover my face to go in the sunshine, but I do not put sunblock on my lips.  That's actually not advised for this type of lip crusting.  Milder moisturizers are advised.  Lots of moisture is advised, but stuff with the least complicated ingredients possible, and sunblocks tend to be quite ingredient-laden.  Hats are best for this.

Also, the psych-med-induced alopecia is flared up VERY badly right now.  I'm missing well over half of the lashes on one eye and chunks out of one eyebrow.  The hair loss I experience is all relegated to the same side of my body that developed weaker muscles from the tardive dystonia.  My body is still split into hemispheric problems if that makes sense.  My right side is where my leg still drags and shoulder droops, as well as having less sensation on the right side of my body and face than on the left.  It can't possibly be mere coincidence that my hair, brows, and lashes are falling out on the weakened right side of my body.  I'm practicing with false eyelashes, though.  Everyone else wears them, anyway, so I might as well.  But I'd rather have my eyelashes back, of course.

While my mobility overall is so much better than it was years ago—and my cognition has improved—I can't lie and say that the superficial problems with my skin and hair and deformed lips don't depress me.  It's like my armor to face the world has been stripped away, and that's very vulnerable after the type of damage we've been through.

Luckily, I'm pretty good with hair and makeup tricks, so I'll always find some way to face the world on the days I HAVE to leave the house, but I no longer leave the house for fun.  There was a brief period of time when I would drive myself to the grocery store and walk around for physical therapy, but now the problems on my face keep me inside my house.  Again, I must stress that my skin and hair were 100% normal before psych meds, so I've no doubts that these problems are rooted in the AD damage.

I've been to dermatologists, and I've had my immune system tested.  Things always come back normal, but the fact is that my body does nothing but behave abnormally ever since it got riddled by psych meds and mutilated by withdrawal.  Normal test results are nice, but they are not analogous to a normal body anymore.  

It seems there's always a trade.  Now I walk better than I did four years ago, but my face looks disgusting.

This is what my lips look like.  This photo isn't MY mouth, but it is exactly what my lips look like.  I'm too embarrassed and depressed to post a photo of my actual lips.  I'm sure you can see from this photo why I am again having trouble eating and why I would rather hide my face than go out in the world.

I'm still so happy when I see other people recover, though, and I do know recovery is possible for many, because I've seen it happen to my friends in these groups over the years.  And even I've recovered a lot.  It's a miracle how much better I am, even if I'm not the way I was before.

The fact is we do get better.  Even cases like mine get better, and being alive to know that I'm lucky is a pretty good thing.          

EC Screen Shot 2018-11-17 at 6.14.28 AM.png

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Altostrata

Well, WiggleIt, the recovery game is only in middle innings.

 

It sounds like you have some hyper-reactivity symptoms. Have you investigated perhaps omitting certain foods? These can trigger what are called non-IGE reactions. Doctors in the US understand these poorly because they're not the usual allergic IGE reactions and often don't respond to the usual drugs. European doctors are somewhat more advanced.

 

See Treatment of Atopic Dermatitis with a Low-histamine Diet

 

Histamine Intolerance - Dermatologic Sequels

 

https://www.histamine-sensitivity.com/histamine_joneja.html

 

https://www.amymyersmd.com/2016/04/treat-eczema-inside/

 

Histamine Intolerance: Could it be causing your symptoms?

 

https://www.aha.ch/swiss-allergy-centre/info-on-allergies/-allergies-intolerances/food-intolerance/histamine-intolerance/?oid=1472&amp;lang=en

 

Histamine food intolerance

 

Elimination or exclusion diets for reactions to food (food intolerance)

 

We do have some members who seem to have developed histamine intolerance in connection with adverse drug reactions. It's possible these alter gut function in such a way that production of the enzyme that breaks down histamine in foods, DAO, is disrupted. This initiates a cycle where causes gut irritation interferes with DAO, then histamine intolerance causes more gut irritation. A low-histamine diet, or removal of the specific foods causing a reaction, can break this cycle, the gut eventually heals.

 

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JackieDecides
9 hours ago, WiggleIt said:

This is what my lips look like.  This photo isn't MY mouth, but it is exactly what my lips look like.  I'm too embarrassed and depressed to post a photo of my actual lips.

 

I'm sad to hear the sores keep you from eating normally and getting dental work done.  it sure feels like there  ought to be some help for it. 

 

I'm glad your movement has improved and you are able to drive.

 

I think, like Alto does, that you are a work in progress. 

 

 

 

 

 

 

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Survivor1
On 11/17/2018 at 7:26 AM, WiggleIt said:

The fact is we do get better.  Even cases like mine get better, and being alive to know that I'm lucky is a pretty good thing.   

 

I am so inspired by your ability to be positive despite your numerous setbacks.  I truly wish you are able to overcome this in time.  

 

All the best.

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WiggleIt
4 hours ago, Survivor1 said:

 

I am so inspired by your ability to be positive despite your numerous setbacks.  I truly wish you are able to overcome this in time.  

 

All the best.

 

Dear Survivor1,

Thank you for your kindness!  I hope the same for you.  I just caught up on your thread and am heartbroken for all the skin issues, the SJS, and the adverse steroid reaction—and so sad about all the suffering in general!  I will go over to your thread and respond more completely <3

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WiggleIt
On 11/17/2018 at 2:46 PM, Altostrata said:

We do have some members who seem to have developed histamine intolerance in connection with adverse drug reactions. It's possible these alter gut function in such a way that production of the enzyme that breaks down histamine in foods, DAO, is disrupted. This initiates a cycle where causes gut irritation interferes with DAO, then histamine intolerance causes more gut irritation. A low-histamine diet, or removal of the specific foods causing a reaction, can break this cycle, the gut eventually heals.

 


Hi Alto!

I have investigated a low histamine diet, researched a book that seemed like a good guide to try, but then I scrapped the idea for two reasons:

1.) I moved away from the histamine theory in my own case after investigating the connection between lip immune reactions and cold sores and staph infections, both of which I had on my lips in rapid succession right before the crusting began.  Even after the cold sores and staph infection healed, the crusting remained.  I suspected it was an autoimmune reaction, and then a specialist confirmed that suspicion.  I assume that my assume system has been altered by psych meds and also assumed (maybe incorrectly?) that histamine would not be involved in my particular lips' case, although I do know that psych meds wreak havoc on histamine reactions.  

2.) The second reason I never pulled the trigger on getting the low histamine book was... just being plain overwhelmed.  What with keeping on physical therapy (I need two kinds), resting, experimenting with various lip moisturizers and routines, and the current dietary guide I try to follow (Wahl's Protocol), I just plain old got too overwhelmed to add something else. 

Question: Even with the potential role of herpes, staph, and a whacked-out immune reaction, do you still think histamine could be playing a role?  I can definitely still try the low histamine approach, but it will be a slow start due to the overwhelmed factor I mentioned.

Also... do you have any ideas at all why my hair loss/alopecia is only relegated to one side, the weak side, of my body?  Do you think that might have to do with histamine, or do you think there could be something to my hypothesis that the weak side of my body lost some kind of signal?  I've read that there is a specific muscle (the something pili muscle) that attaches to the base of hair follicles, and if that muscles loses follicle contact, it's one reason for hair loss.  Of course, I can't help but wonder if that tiny muscle is affected by the neuromuscular weakness on the right side of my body and if that's why I suffer alopecia on that side only.  But if histamine might also be a factor, then I'm happy to give it a go for my lips and hair, and just see what happens.  Maybe it seems shallow, but I'd freaking implode from joy if my lips healed and my eyelashes grew back.

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WiggleIt

Just a happy little tidbit for anyone who follows my thread:

Despite my physical side effects remaining, I talk a lot about my improvement and happiness, so I just wanted to post a tiny example from today: I enjoyed my weekly ritual of watching The Walking Dead with my family.  In fact, many times over the course of WD, that show was the only thing I had to look forward to every week, so it has a special place in my heart.  Now, I do have other things to look forward to, but it's still my family ritual to watch TWD every Sunday with my folks.  I bet they never thought they'd get hooked on a zombie apocalypse show as senior citizens, but here we are!  

It's this kind of small thing that I've learned to look at with fresh eyes.  It's such a simple joy, and I'm so unashamed that a TV show brings me such an escape.  So I don't galavant around other countries—so what?  It turns out that I don't need a lot of complex things to have a happy life, and that's not a bad takeaway from this whole WD experience.

May we all indulge any simple joys we need to keep going!

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Carmie

Hi Wigglelt,

 

I just read some of your thread n I’m so sorry to hear all you’ve been going through, you really have had a rough time. 

 

I just checked out the wahls diet you mentioned, I see it’s an autoimmune diet. I used to follow the autoimmune diet in the The Paleo Approach Book. I was on it for years n I was strict on it. I still pretty much eat Paleo most of the time, though I make some exceptions here n there. What do you mainly eat? 

 

Do you stick to it one hundred percent because of the problem with your lips? That must be such a hard trial for you, my heart goes out to you. Do the natural therapists say there is anything else you can do as well as the autoimmune diet? In withdrawals we can’t really take many natural things either as we are sensitive to a lot of them too.

 

I hope that your lips continue to heal. That was good to hear that many people have healed, that gives one hope.

 

Take care, sending hugs🤗

 

 

 

 

 

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Altostrata

Histamine intolerance is an autoimmune reaction related to mast cell activation syndrome. Very few physicians in the US are aware of this.

 

Yes, you could have both histamine intolerance and infections.

 

Trial of an exclusion diet is easy, low-risk, and inexpensive. You might find, for example, that you react to dairy or nightshades, it's fairly simple to avoid these.

 

I have no more idea why you get certain skin manifestations than the doctors you've been seeing. There are a lot of gaps in medicine's understanding of autoimmune conditions.

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Carmie

Hi again Wigglet, 

 

According to Alto it looks like histamine intolerance is an autoimmune reaction. I know everything seems overwhelming but it might be worth a go to try the low histamine diet for a month or two and see how you go. It can’t hurt, and if it does help wouldn’t that be great? I started eating more low histamine foods recently because I kept getting severe breakouts n itchiness on my face.  Since I’ve lowered the amount of histamine it’s much better. I was looking like a teenager with acne before and I’m in my 50’s😁

 

You could just start limiting the particular foods that you eat regularly that are high in histamine if you feel too overwhelmed to start the full on low histamine diet. 

 

I used to drink a lot of lemon water n I always put bananas in my smoothies so I was pretty much having high histamine foods all day and my face n head were always itchy, and the breakouts were so severe. No more bananas in my smoothies and bye bye lemon water. 🍋🍌

 

Sending hugs🤗

 

 

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JackieDecides
On 11/19/2018 at 9:32 AM, Altostrata said:

Yes, you could have both histamine intolerance and infections.

 

Trial of an exclusion diet is easy, low-risk, and inexpensive.

 

I don't see any downside to trying it.

 

@WiggleIt   thinking of you 🤗

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WiggleIt

Hi All!

Okay, I have found a low histamine book that I'd like try out and have taken tiny steps to reducing histamine liberating foods, but have not yet gone full-blown.  I am going to keep going with this and let you all know if there's any progress.  Sometimes, I'm just like a snail in trying to adapt to a new routine, but I agree that this dietary change is very low-risk and might have some good rewards.  It certainly won't hurt anything.

 

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JackieDecides
On 12/9/2018 at 7:06 PM, WiggleIt said:

Hi All!

Okay, I have found a low histamine book that I'd like try out and have taken tiny steps to reducing histamine liberating foods, but have not yet gone full-blown.  I am going to keep going with this and let you all know if there's any progress.  Sometimes, I'm just like a snail in trying to adapt to a new routine, but I agree that this dietary change is very low-risk and might have some good rewards.  It certainly won't hurt anything.

 

 

 

how are things going, WiggleIt?

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Rbvdk
On 11/6/2018 at 11:21 AM, WiggleIt said:

Dear Rbvdk,

When more than one med is involved—as is the case for most of us—it's nearly impossible to say which pill caused what, but we know for sure that the pills did this to us.  In my opinion, stress and tension wouldn't cause PGAD; or, if stress and tension could cause PGAD, those cases would be extremely rare.  Much more rare than PGAD from psych pills.  If you didn't have PGAD in your life before meds, then, in my opinion, it's a clear sign that the meds caused the PGAD.  

In my view, the fact that your PGAD is episodic seems like a good sign.  A physical therapist once told me, "If you have moments where you're pain-free, then it means you CAN be pain-free all the time.  It's just a matter of figuring out how."  I'm confident that your PGAD will completely disappear as your body heals more and more, and please know that you can ask me anything anytime!

Sorry I keep using the phrase "in my opinion" so repetitively!  I don't want to act like a huge expert over other people's bodies, even though I do feel expertise talking about my own body :)

 

Sorry for the super late reply I forgot to turn email notifications on oops! Ah I actually know quite a few people who had stress/anxiety-induced PGAD and it's a lot more common than I thought. They're better now too after going through some mind-body stuff or reassurance. I also had psychsomatic PGAD a few times (mostly while still on Citalopram) and they were very clearly 100% psychsomatic and went away once I was reassured by that. This time is different though, I can tell this is real there's no doubt, especially comparing it with my past psychosomatic PGAD. It's either caused by citalopram or some past physical injury I had (Like I'm wondering if citalopram is powerful enough to mask nerve damage-induced PGAD?) 

And that's a nice quote! Definitely makes me feel better thanks for sharing that with me! 🙂 Its because of these episodes of 0 symptoms that make me think/hope it's caused by the meds and not by pernemant physical injury. My doctor said if it was a physical cause then you'd feel it 24/7 so that made me feel better. It's just waiting for when or if this pgad will ever go away. But reading this has reassured me that it will go away so thank you so much. 🙂 Did your PGAD ever feel like it got worse before it got better by the way? I think mine was very very low-key since August but has flared massively these past 3-2 months.

 

thanks so much again you're awesome and I hope you're doing well! Stay strong!

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Carmie
On 12/10/2018 at 1:06 PM, WiggleIt said:

Hi All!

Okay, I have found a low histamine book that I'd like try out and have taken tiny steps to reducing histamine liberating foods, but have not yet gone full-blown.  I am going to keep going with this and let you all know if there's any progress.  Sometimes, I'm just like a snail in trying to adapt to a new routine, but I agree that this dietary change is very low-risk and might have some good rewards.  It certainly won't hurt anything.

 

 

Hi Wigglelt,

 

So glad you got yourself a low histamine book. Tiny steps is the way to go, just incorporate things slowly because that way you won’t feel so overwhelmed. Slow and steady does it. 

 

I know when I eat lots of high histamine foods my face n head get really itchy n I break out in lots of pimples, including those big under the skin cyst like ones. When I stick to mainly low histamine foods it’s not a problem.

 

I hope it helps a bit. It may take a while to take effect. 

 

Sending hugs🤗

 

 

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Wishes19

Hi Wiggleit,

 

I’m sure you and your doctors have thought of this already — and maybe you’ve looked into this — but when I hear about skin and hair stuff together, vitamin deficiencies come to mind. B7 (Biotin) deficiency can cause cheilitis and alopecia together, and I believe that zinc, B2, B3, and iron deficiencies can as well.

 

Since you mentioned having difficulty eating prior to the cheilitis, I wonder if dietary changes you had to undergo could have led to a micronutrient deficiency....stranger things have happened!

 

I’ve followed your progress along for a few years. I am struck by the positivity and humor that come out in your writings, despite all you’ve been through. You are such a bada**.  I am sorry you’ve been through these ordeals. I hope 2019 brings a good butt-whippin’ to all this stuff.

 

 

 

 

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