Jump to content

IsThereLight: at the end of the tunnel?


IsThereLight

Recommended Posts

I have been lurking on this site now for about 2 months. I find myself coming here for reassurance in my darkest moments.  Today, I am suffering so badly and I finally have the courage to share my story. I suppose this is my way of saying “I’m desperate”. It is it so hard to admit this – that things have gotten so out of control and I am legitimately afraid. I’ll do my best to recount my story but there is much that I don’t remember, the reason for my poor memory may become clear as I tell my story. Apologies for the length.

 

After the birth of my second child in ’99, I was diagnosed with post partem depression and that was the beginning of the on-again-off-again latest greatest anti-depressant at modest doses over the course of 10 years. I never had classic depression, but had an “imbalance” that led to the blues now and again.  I never noticed any withdrawal symptoms as I moved in and out of SSRI’s and SNRI’s – or at least I didn’t know what it was if I had them.

 

In 2010, I started having a cascade of health problems. I’m sorry I do not recall what anti-depressant I was on at the time but I do know as the many random and disjointed symptoms came and went, the doses to help me cope and the strength and number of drugs increased. I really don’t remember. I spent 4 years trying to figure out what was wrong with me – at some point, I was diagnosed with Lyme disease and began taking all manner of medications to fight that and relieve my symptoms. By the time 2014 rolled around I was taking a basket full of drugs which included a good strong dose of Lamictal and as much Hydrocodone and Benzo as I wanted/needed, which, unfortunately, was a lot.

 

Eventually, I took to my bed and couldn’t function. After months, I finally cried uncle that I couldn’t take it anymore – the pain, the fog, the drug side effects, etc. led me to ask to be treated at John’s Hopkins depression/pain unit. 6 weeks in-patient. I don’t remember most of my time there as they detoxed me, told me that I didn’t have Lyme and labeled me with Major Depression. They convinced everyone around me that I needed ECT to get my life back from “depression” and although it scared me to death, I went along for numerous sessions. My memory will never be the same.

 

I left the hospital in the fall of 2014 feeling better but with prescriptions for Latuda (lurasidone) and Lithium. I believe I took those for 2 years as I hid out in my house in the dark, alone, feeling completely bereft of all emotion, motivation or joy.  So around 2016, I changed psychiatrists to a “famous” Hopkins doctor and he took me off the Lithium and  prescribed 80mg Latuda, 120mg Cymbalta, a low dose of Trazadone (for sleep issues-he never mentioned it was also an anti-depressant) and 50mg Adderall (to keep me awake and able to focus because I was always so fatigued). Still feeling stunted and dulled, lifeless & fatigued, I gradually reduced down to 40mg Latuda, 60mg Cymbalta, the low dose of Trazadone and 25mg Adderall and that is where I was in April 2020.

 

Over the years after my hospital stay, I barely left the house and the couch. I was able to accomplish a few things and contributed to the workings of the family, but I really have had no life for about 10 years now. In January 2020, I began to be very agitated, anxious and fatigued every day- as opposed to the consistent hum of dull. I would get up in the morning, take my Adderall, drink 2 cups of coffee and go back to sleep 2 hours later. I wasn’t able to really function until after 1:00pm and really not function productively until after 4:00pm. Obviously, the meds were not contributing much good to my life.

At that point I began to question everything, I really just needed to know where my baseline was so that I could make medication decisions going forward if I really am majorly depressed.

 

Since 2018, I often discussed going off the meds with my doctor. And we discussed reducing down and going off should not be a problem just to do it one at a time and if I felt uncomfortable it was due to my underlying diagnosis and I should raise back up. So, I followed this advice. In hindsight, I should have clarified what dose to reduce to but I never had the impression it was much of an issue. I first went off the Trazadone “without issue” as I really wasn’t looking for “issues” to arise. Then I stopped Cymbalta at 60 mg. In retrospect this is when my “issues” started, but they were I did not know what the cause of the issues was. I began having ALL of the known side effects of stopping Cymbalta but it was inconsistent and not too intense and thought my Lyme had returned. I broke out in sores/blisters on my face, neck & back, started having stomach issues, tingling sensation in hands and feet, episodes of vertigo, flashes of anxiety and a general overall feeling of dis-ease.

 

During this time, late Spring to Fall, I spoke to my psychiatrist twice and he assured me that my symptoms were not medication reduction related and inquired what doctors I was seeing to help me with my skin issues and my obvious illness. I told him that I was quite emotional and had a bit more anxiety and he told me to go back on the meds because I obviously need them. But I did see doctors. I saw the dermatologist and she could not diagnose my issue with the skin blisters after many tests. I am still having blister break outs to this day as they rotate around my face and neck, last forever, and have left scars up and down my arms. She gave me a steroid and told me not to scratch them.

 

I sought help from a “world renowned” infectious disease doctor from Hopkins who ran all the preliminary blood tests on me and found no issues, referred me to another dermatologist and assured me that I do not have an infectious disease. At this point, in September, still not understanding what was happening to me, I was stable at 10 mg of Latuda and feeling somewhat normal. With the exception of the blisters, I was feeling better and the doctor told me I could stop Latuda at any time.

 

I stopped Latuda completely at 10 mg in mid-September and I have been in the storm ever since and I finally went searching online for answers that doctors couldn’t/wouldn’t give and I found you. It was then that I realized what was going on…maybe beginning of October. The first 6 weeks were like nothing I’ve ever experienced in my life with the nausea, rushing anxiety, suicidal ideation, rapid thoughts, nightmares, horror upon waking and all the rest of the works. Coming and going in an onslaught. I can literally say, I have been toughing it out bravely, watching weekly as I made minimal progress but determined never to eat the poison again.

 

I finally reached a point where the baseline was “livable”, no nausea, lessening anxiety, fewer racing thoughts, and stable enough emotions . I always had good days, followed by bad but the trajectory was improving and I was gaining confidence. Unfortunately over the past two weeks, I’ve felt increasing unease and been feeling progressively worse with fewer and fewer windows.

 

I told myself I was going to tough this out until New Years before I would attempt to reinstate. Over the past week, I spent most of my days listening to solfeggio frequencies and trying to keep my nervous system calm. My breakouts got worse, I started having heart palpitations and really rough reality thoughts with anxiety surges and then all of a sudden, I couldn’t sleep. Until this week, I was sleeping fine, except for the cortisol surge in the morning but now I have to sit and ruminate in my own pity at 3am. So I cried uncle and reinstated Latuda at 1mg. My husband is a chemist, so this was no problem but I’m worried that this 2 days of reinstatement may be causing me to feel worse and symptoms have returned that were gone long ago – like hot flashes, crying spells and feelings of doom. I’ve also developed what some have called “electric anxiety” and my scalp seems to burn whenever I have an emotion, of any kind.

 

So, I know reinstating was a crapshoot because I went off of 3 drugs within a 4 month period and there is no telling which of these poisons is causing my torment but I chose Latuda because, other than the blisters, I seemed to have stabilized for a couple of weeks very well at 10mg and when I went off the hounds of hell were released.

 

I’m sorry this could not be a short story. It is SO difficult to write. To realize what I’ve done to myself and to look in the mirror at my blistered face and sunken eyes with the overwhelming disappointment of having failed myself and everyone around me. And I cannot find a hopeful timeline anywhere to get out of this torture chamber. I’ve gleaned a lot of great info from my fellow travelers on this site, but it seems ultimately the answer is that there is no definitive answer but that eventually I will heal. I’m trying to come to terms with that. In the meantime, if someone could please tell me what to do about this reinstatement process. After two days, I’m feeling worse, not better, but I was in a bad place when I decided to go for it so I don’t know what to do now. Obviously, my biggest fear is making things worse and extending this even longer. I feel a strong degree of responsibility to preserve what is left of my brain and nervous system after all of this.

 

My humble thanks to this site and

Merry Christmas everyone,

K

Edited by Altostrata
added line breaks

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
2 hours ago, IsThereLight said:

I have been lurking on this site now for about 2 months. I find myself coming here for reassurance in my darkest moments.  Today, I am suffering so badly and I finally have the courage to share my story. I suppose this is my way of saying “I’m desperate”. It is it so hard to admit this – that things have gotten so out of control and I am legitimately afraid. I’ll do my best to recount my story but there is much that I don’t remember, the reason for my poor memory may become clear as I tell my story. Apologies for the length.

After the birth of my second child in ’99, I was diagnosed with post partem depression and that was the beginning of the on-again-off-again latest greatest anti-depressant at modest doses over the course of 10 years. I never had classic depression, but had an “imbalance” that led to the blues now and again.  I never noticed any withdrawal symptoms as I moved in and out of SSRI’s and SNRI’s – or at least I didn’t know what it was if I had them.

In 2010, I started having a cascade of health problems. I’m sorry I do not recall what anti-depressant I was on at the time but I do know as the many random and disjointed symptoms came and went, the doses to help me cope and the strength and number of drugs increased. I really don’t remember. I spent 4 years trying to figure out what was wrong with me – at some point, I was diagnosed with Lyme disease and began taking all manner of medications to fight that and relieve my symptoms. By the time 2014 rolled around I was taking a basket full of drugs which included a good strong dose of Lamictal and as much Hydrocodone and Benzo as I wanted/needed, which, unfortunately, was a lot.

Eventually, I took to my bed and couldn’t function. After months, I finally cried uncle that I couldn’t take it anymore – the pain, the fog, the drug side effects, etc. led me to ask to be treated at John’s Hopkins depression/pain unit. 6 weeks in-patient. I don’t remember most of my time there as they detoxed me, told me that I didn’t have Lyme and labeled me with Major Depression. They convinced everyone around me that I needed ECT to get my life back from “depression” and although it scared me to death, I went along for numerous sessions. My memory will never be the same.

I left the hospital in the fall of 2014 feeling better but with prescriptions for Latuda (lurasidone) and Lithium. I believe I took those for 2 years as I hid out in my house in the dark, alone, feeling completely bereft of all emotion, motivation or joy.  So around 2016, I changed psychiatrists to a “famous” Hopkins doctor and he took me off the Lithium and  prescribed 80mg Latuda, 120mg Cymbalta, a low dose of Trazadone (for sleep issues-he never mentioned it was also an anti-depressant) and 50mg Adderall (to keep me awake and able to focus because I was always so fatigued). Still feeling stunted and dulled, lifeless & fatigued, I gradually reduced down to 40mg Latuda, 60mg Cymbalta, the low dose of Trazadone and 25mg Adderall and that is where I was in April 2020.

Over the years after my hospital stay, I barely left the house and the couch. I was able to accomplish a few things and contributed to the workings of the family, but I really have had no life for about 10 years now. In January 2020, I began to be very agitated, anxious and fatigued every day- as opposed to the consistent hum of dull. I would get up in the morning, take my Adderall, drink 2 cups of coffee and go back to sleep 2 hours later. I wasn’t able to really function until after 1:00pm and really not function productively until after 4:00pm. Obviously, the meds were not contributing much good to my life.

At that point I began to question everything, I really just needed to know where my baseline was so that I could make medication decisions going forward if I really am majorly depressed.

Since 2018, I often discussed going off the meds with my doctor. And we discussed reducing down and going off should not be a problem just to do it one at a time and if I felt uncomfortable it was due to my underlying diagnosis and I should raise back up. So, I followed this advice. In hindsight, I should have clarified what dose to reduce to but I never had the impression it was much of an issue. I first went off the Trazadone “without issue” as I really wasn’t looking for “issues” to arise. Then I stopped Cymbalta at 60 mg. In retrospect this is when my “issues” started, but they were I did not know what the cause of the issues was. I began having ALL of the known side effects of stopping Cymbalta but it was inconsistent and not too intense and thought my Lyme had returned. I broke out in sores/blisters on my face, neck & back, started having stomach issues, tingling sensation in hands and feet, episodes of vertigo, flashes of anxiety and a general overall feeling of dis-ease.

During this time, late Spring to Fall, I spoke to my psychiatrist twice and he assured me that my symptoms were not medication reduction related and inquired what doctors I was seeing to help me with my skin issues and my obvious illness. I told him that I was quite emotional and had a bit more anxiety and he told me to go back on the meds because I obviously need them. But I did see doctors. I saw the dermatologist and she could not diagnose my issue with the skin blisters after many tests. I am still having blister break outs to this day as they rotate around my face and neck, last forever, and have left scars up and down my arms. She gave me a steroid and told me not to scratch them.

I sought help from a “world renowned” infectious disease doctor from Hopkins who ran all the preliminary blood tests on me and found no issues, referred me to another dermatologist and assured me that I do not have an infectious disease. At this point, in September, still not understanding what was happening to me, I was stable at 10 mg of Latuda and feeling somewhat normal. With the exception of the blisters, I was feeling better and the doctor told me I could stop Latuda at any time.

I stopped Latuda completely at 10 mg in mid-September and I have been in the storm ever since and I finally went searching online for answers that doctors couldn’t/wouldn’t give and I found you. It was then that I realized what was going on…maybe beginning of October. The first 6 weeks were like nothing I’ve ever experienced in my life with the nausea, rushing anxiety, suicidal ideation, rapid thoughts, nightmares, horror upon waking and all the rest of the works. Coming and going in an onslaught. I can literally say, I have been toughing it out bravely, watching weekly as I made minimal progress but determined never to eat the poison again.

I finally reached a point where the baseline was “livable”, no nausea, lessening anxiety, fewer racing thoughts, and stable enough emotions . I always had good days, followed by bad but the trajectory was improving and I was gaining confidence. Unfortunately over the past two weeks, I’ve felt increasing unease and been feeling progressively worse with fewer and fewer windows.

I told myself I was going to tough this out until New Years before I would attempt to reinstate. Over the past week, I spent most of my days listening to solfeggio frequencies and trying to keep my nervous system calm. My breakouts got worse, I started having heart palpitations and really rough reality thoughts with anxiety surges and then all of a sudden, I couldn’t sleep. Until this week, I was sleeping fine, except for the cortisol surge in the morning but now I have to sit and ruminate in my own pity at 3am. So I cried uncle and reinstated Latuda at 1mg. My husband is a chemist, so this was no problem but I’m worried that this 2 days of reinstatement may be causing me to feel worse and symptoms have returned that were gone long ago – like hot flashes, crying spells and feelings of doom. I’ve also developed what some have called “electric anxiety” and my scalp seems to burn whenever I have an emotion, of any kind.

So, I know reinstating was a crapshoot because I went off of 3 drugs within a 4 month period and there is no telling which of these poisons is causing my torment but I chose Latuda because, other than the blisters, I seemed to have stabilized for a couple of weeks very well at 10mg and when I went off the hounds of hell were released.

I’m sorry this could not be a short story. It is SO difficult to write. To realize what I’ve done to myself and to look in the mirror at my blistered face and sunken eyes with the overwhelming disappointment of having failed myself and everyone around me. And I cannot find a hopeful timeline anywhere to get out of this torture chamber. I’ve gleaned a lot of great info from my fellow travelers on this site, but it seems ultimately the answer is that there is no definitive answer but that eventually I will heal. I’m trying to come to terms with that. In the meantime, if someone could please tell me what to do about this reinstatement process. After two days, I’m feeling worse, not better, but I was in a bad place when I decided to go for it so I don’t know what to do now. Obviously, my biggest fear is making things worse and extending this even longer. I feel a strong degree of responsibility to preserve what is left of my brain and nervous system after all of this.

My humble thanks to this site and

Merry Christmas everyone,

K

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Edited by manymoretodays
none, was going to remove large quote, but not sure if it's a duplicate yet of first post

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Administrator

Welcome, IsThereLight.

 

I am sorry you're going through this. For background information, please put your earlier drug cocktail (Latuda, Cymbalta, Trazadone, Adderall) in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results or a link to them in this topic.

 

You have reinstated 1mg Latuda and your skin reaction got worse, correct? You've taken only a few doses? If I were you, I'd stop taking it. It sounds like you're sensitive to something in it. People can be allergic to a psychiatric drug.

 

How did you go off Cymbalta? When did your skin issues start?

 

To relieve some of your misery, I suggest you forgive yourself for any mistakes you made. You might have to say, "I forgive myself" many times a day. Do it as often as you need to.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
1 hour ago, IsThereLight said:

I have been lurking on this site now for about 2 months. I find myself coming here for reassurance in my darkest moments.  Today, I am suffering so badly and I finally have the courage to share my story. I suppose this is my way of saying “I’m desperate”. It is it so hard to admit this – that things have gotten so out of control and I am legitimately afraid. I’ll do my best to recount my story but there is much that I don’t remember, the reason for my poor memory may become clear as I tell my story. Apologies for the length.

After the birth of my second child in ’99, I was diagnosed with post partem depression and that was the beginning of the on-again-off-again latest greatest anti-depressant at modest doses over the course of 10 years. I never had classic depression, but had an “imbalance” that led to the blues now and again.  I never noticed any withdrawal symptoms as I moved in and out of SSRI’s and SNRI’s – or at least I didn’t know what it was if I had them.

In 2010, I started having a cascade of health problems. I’m sorry I do not recall what anti-depressant I was on at the time but I do know as the many random and disjointed symptoms came and went, the doses to help me cope and the strength and number of drugs increased. I really don’t remember. I spent 4 years trying to figure out what was wrong with me – at some point, I was diagnosed with Lyme disease and began taking all manner of medications to fight that and relieve my symptoms. By the time 2014 rolled around I was taking a basket full of drugs which included a good strong dose of Lamictal and as much Hydrocodone and Benzo as I wanted/needed, which, unfortunately, was a lot.

Eventually, I took to my bed and couldn’t function. After months, I finally cried uncle that I couldn’t take it anymore – the pain, the fog, the drug side effects, etc. led me to ask to be treated at John’s Hopkins depression/pain unit. 6 weeks in-patient. I don’t remember most of my time there as they detoxed me, told me that I didn’t have Lyme and labeled me with Major Depression. They convinced everyone around me that I needed ECT to get my life back from “depression” and although it scared me to death, I went along for numerous sessions. My memory will never be the same.

I left the hospital in the fall of 2014 feeling better but with prescriptions for Latuda (lurasidone) and Lithium. I believe I took those for 2 years as I hid out in my house in the dark, alone, feeling completely bereft of all emotion, motivation or joy.  So around 2016, I changed psychiatrists to a “famous” Hopkins doctor and he took me off the Lithium and  prescribed 80mg Latuda, 120mg Cymbalta, a low dose of Trazadone (for sleep issues-he never mentioned it was also an anti-depressant) and 50mg Adderall (to keep me awake and able to focus because I was always so fatigued). Still feeling stunted and dulled, lifeless & fatigued, I gradually reduced down to 40mg Latuda, 60mg Cymbalta, the low dose of Trazadone and 25mg Adderall and that is where I was in April 2020.

Over the years after my hospital stay, I barely left the house and the couch. I was able to accomplish a few things and contributed to the workings of the family, but I really have had no life for about 10 years now. In January 2020, I began to be very agitated, anxious and fatigued every day- as opposed to the consistent hum of dull. I would get up in the morning, take my Adderall, drink 2 cups of coffee and go back to sleep 2 hours later. I wasn’t able to really function until after 1:00pm and really not function productively until after 4:00pm. Obviously, the meds were not contributing much good to my life.

At that point I began to question everything, I really just needed to know where my baseline was so that I could make medication decisions going forward if I really am majorly depressed.

Since 2018, I often discussed going off the meds with my doctor. And we discussed reducing down and going off should not be a problem just to do it one at a time and if I felt uncomfortable it was due to my underlying diagnosis and I should raise back up. So, I followed this advice. In hindsight, I should have clarified what dose to reduce to but I never had the impression it was much of an issue. I first went off the Trazadone “without issue” as I really wasn’t looking for “issues” to arise. Then I stopped Cymbalta at 60 mg. In retrospect this is when my “issues” started, but they were I did not know what the cause of the issues was. I began having ALL of the known side effects of stopping Cymbalta but it was inconsistent and not too intense and thought my Lyme had returned. I broke out in sores/blisters on my face, neck & back, started having stomach issues, tingling sensation in hands and feet, episodes of vertigo, flashes of anxiety and a general overall feeling of dis-ease.

During this time, late Spring to Fall, I spoke to my psychiatrist twice and he assured me that my symptoms were not medication reduction related and inquired what doctors I was seeing to help me with my skin issues and my obvious illness. I told him that I was quite emotional and had a bit more anxiety and he told me to go back on the meds because I obviously need them. But I did see doctors. I saw the dermatologist and she could not diagnose my issue with the skin blisters after many tests. I am still having blister break outs to this day as they rotate around my face and neck, last forever, and have left scars up and down my arms. She gave me a steroid and told me not to scratch them.

I sought help from a “world renowned” infectious disease doctor from Hopkins who ran all the preliminary blood tests on me and found no issues, referred me to another dermatologist and assured me that I do not have an infectious disease. At this point, in September, still not understanding what was happening to me, I was stable at 10 mg of Latuda and feeling somewhat normal. With the exception of the blisters, I was feeling better and the doctor told me I could stop Latuda at any time.

I stopped Latuda completely at 10 mg in mid-September and I have been in the storm ever since and I finally went searching online for answers that doctors couldn’t/wouldn’t give and I found you. It was then that I realized what was going on…maybe beginning of October. The first 6 weeks were like nothing I’ve ever experienced in my life with the nausea, rushing anxiety, suicidal ideation, rapid thoughts, nightmares, horror upon waking and all the rest of the works. Coming and going in an onslaught. I can literally say, I have been toughing it out bravely, watching weekly as I made minimal progress but determined never to eat the poison again.

I finally reached a point where the baseline was “livable”, no nausea, lessening anxiety, fewer racing thoughts, and stable enough emotions . I always had good days, followed by bad but the trajectory was improving and I was gaining confidence. Unfortunately over the past two weeks, I’ve felt increasing unease and been feeling progressively worse with fewer and fewer windows.

I told myself I was going to tough this out until New Years before I would attempt to reinstate. Over the past week, I spent most of my days listening to solfeggio frequencies and trying to keep my nervous system calm. My breakouts got worse, I started having heart palpitations and really rough reality thoughts with anxiety surges and then all of a sudden, I couldn’t sleep. Until this week, I was sleeping fine, except for the cortisol surge in the morning but now I have to sit and ruminate in my own pity at 3am. So I cried uncle and reinstated Latuda at 1mg. My husband is a chemist, so this was no problem but I’m worried that this 2 days of reinstatement may be causing me to feel worse and symptoms have returned that were gone long ago – like hot flashes, crying spells and feelings of doom. I’ve also developed what some have called “electric anxiety” and my scalp seems to burn whenever I have an emotion, of any kind.

So, I know reinstating was a crapshoot because I went off of 3 drugs within a 4 month period and there is no telling which of these poisons is causing my torment but I chose Latuda because, other than the blisters, I seemed to have stabilized for a couple of weeks very well at 10mg and when I went off the hounds of hell were released.

I’m sorry this could not be a short story. It is SO difficult to write. To realize what I’ve done to myself and to look in the mirror at my blistered face and sunken eyes with the overwhelming disappointment of having failed myself and everyone around me. And I cannot find a hopeful timeline anywhere to get out of this torture chamber. I’ve gleaned a lot of great info from my fellow travelers on this site, but it seems ultimately the answer is that there is no definitive answer but that eventually I will heal. I’m trying to come to terms with that. In the meantime, if someone could please tell me what to do about this reinstatement process. After two days, I’m feeling worse, not better, but I was in a bad place when I decided to go for it so I don’t know what to do now. Obviously, my biggest fear is making things worse and extending this even longer. I feel a strong degree of responsibility to preserve what is left of my brain and nervous system after all of this.

My humble thanks to this site and

Merry Christmas everyone,

K

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

 

https://www.drugs.com/interactions-check.php?drug_list=3278-14870,949-2273,2228-0,190-1645

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post

Hi Alto,

 

Wow! Unbelievable. Well, maybe not. These are major drug interraction issues and I was on these meds for four years. I don't want to be hyperbolic but isn't this malpractice? Was he just making a judgement call that it would be OK to mix these meds? Maybe I wasn't on high enough doses for him to consider it dangerous. I would be shocked and indignant but at this point this is the least of my concern with my "famous" doctor and his medical advice.

 

yes, I discontinued Cymbalta at 60mg in May and immediately began getting blisters on my neck. I don't know how I was not "in tune" with the relationship between the two but, as I mentioned, I thought Lyme disease was back along with all of the other symptoms I was having. The extreme fatigue was the tip off to a Lyme diagnosis. But who can blame me with all the major interractions of drugs going on in my head! SMH

 

These blisters are really the bane of my existence at this point. They are relentless, crop up in groups, stay for at least a month, migrate,  sometimes ooze. Nothing seems to work on them.....Retin A, steroid cream, neosporin, vitamin E oil, tea tree oil, high quality moisturizer, AcZone, etc. I've actually got some "non-active" sores on my arms from this summer that just wont heal, many deep scars. Even when the dermatologist "drained" one of the blisters and cleaned it out, it didn't heal fully for 2 months. This is not acne. Blisters/sores filled with clear fluid, they seem to fill and sometimes pulse at different times during the day. I've searched everywhere for answers to this. A relationship between a damaged nervous system and blisters. I cannot find anything useful.

 

I'm trying to forgive myself. I really am but I am watching what this is doing to my husband and now waking up to the fact that I have been non-present in our relationship for so long and he's been through this with me before with my Lyme disease (if it was even that). Watching me suffer. Helpless. In many ways, he is really shutting down in response to my suffering. He keeps up a great front with me, supportive and caring but I can feel his pain and sadness no matter how he tries to smile and be normal. This isn't normal and he can't get away. And I have no where to go to save him from this. My kids are home from college right now and spending as much time as possible in their rooms. I don't blame them. I'm a **** show. Who wants to hang out with the woman with blisters all over her face curled up on the sofa listening to soothing frequencies to keep the ugliness away?

 

I went into reinstatement during an overwhelming "wave". Very heightened emotional state, tightening in my chest with my anxiety, surge of the blisters - more intense than it has been for over a month. After taking two days @ 1mg reinstatement, I've experienced sleep sweats (haven't had that for 2 months) upon waking again, insomnia and a strange sensation on my scalp when I have "feelings/emotions". Burns? but not painful. And I've had a couple surges of anxiety that gave me the feeling of electricity...never felt that before.

 

I've read so much of your helpful advice. I truly respect your opinion and am deeply appreciative of what you do here.

 

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Moderator
manymoretodays

Hi IsThereLight and welcome,

And yes, there is.  Light.

 

And hey, I just went ahead and put your dates and medications into a signature for you.

For further edits/updates just go to Accounts/signature

 

It looks like you nailed it, with what we like to see in a signature.  This is the portion you'll see below other members posts too.  And helps us see your situation, at a glance, wherever you post.

Here's the main link about doing signatures too:  Please summarize your withdrawal history in your signature

 

Welcome aboard,

L, P, H, and G,

mmt

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

Link to post

I have conversations with God everyday about forgiveness. I'm really working on it. There is just so much to come to terms with.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post

Thank you, Many. I was a little confused about how to do that. I appreciate the help.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post

Just for clarification. Was I just given a warning for this?

 

- Aggressively advocating religious practices
 

because I mentioned God?

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Moderator
manymoretodays

No, of course not.  I "liked" your post. 

That's not aggressively advocating, that's what you practice.  I do that too. ❤️

And check out the Finding Meaning forum, when you get a chance.  You'll like it, I think.

 

(there are little hearts in the lower right hand corners, where you can "like" posts, or sometimes I use them to acknowledge a post that doesn't need a reply as well)

Edited by manymoretodays

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

Link to post

Thank you for the clarification. I could not figure out why I was assigned a number so went searching in the rules/guidelines and it mentioned that you get a certain number of warnings for certain things. I didn't think I stepped out of line but I wanted to clarify the rules before I continued to engage.

 

I'm glad you liked my post. I now know that I can do the same for others and I will definitely seek out the Finding Meaning forum as faith has been part of my daily ritual to ground me and get through this. Any loving support is welcome.

 

Thanks again.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • 2 weeks later...
  • Administrator
Altostrata

Hello, @IsThereLight, how are you doing?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
IsThereLight

Hi Alto,

 

Hope you were able to take some time to yourself/family to enjoy the holidays. Seems like you are always at the ready on this site - I'm hoping you had a chance for a reprieve.

 

I reinstated at 1mg Latuda the day after Christmas and started feeling better after about 6 days. Most of the most horrific emotional/physical problems have abated and I've just been trying to keep things low stress and not overdo it. My mood is remarkably better, cortisol rush horror show in the morning is gone, sleep is better and anxiety has abated. But I'm worried about the wave that comes every time I feel better that knocks me down again so I'm trying not to get too excited.

 

What has not improved, and, in fact has worsened is my skin issue. I'm literally "bubbling up" with small blister clusters all over my face, neck, and chest and now I'm getting crusty, hard and painful sores on my scalp. I feel like I've tried everything, including prescriptions, (see prior posts) and cannot get any relief. I think I've read every post on your site regarding skin and haven't heard anyone who has had this problem for this long (since Spring) and it keeps "evolving"- so to speak. Could this be due to really damaging my nervous system? I haven't been able to find any literature in my web searches to confirm this either. 

 

Your thoughts are always welcome. 

Thank you,

K

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Moderator Emeritus
ChessieCat

If something disappears when something is eliminated and then returns upon reintroduction then there is a possibility that the thing reintroduced is the cause.  If it has happened on more than one occasion then it is even more likely to be the culprit.

 

I did an internet search and found these:

 

https://acneresearch.org/does-latuda-lurasidone-cause-or-cure-acne-latuda-reviews/

 

Quote

If you have used Latuda (lurasidone) and experienced an increase or decrease in acne, please tell us about it here.

 

There are 15 comments on the above page.  I quickly skimmed the responses and most of them appear to be reporting an increase in skin issues.

 

AND:

 

https://www.drugs.com/sfx/latuda-side-effects.html

 

 

Quote

 

Dermatologic

Common (1% to 10%): Rash, pruritus

Uncommon (0.1% to 1%): Hyperhidrosis

Frequency not reported: , Stevens-Johnson syndrome, urticaria

Postmarketing reports: Bullous dermatitis, maculopapular rash, pustular rash, severe cutaneous reactions, skin eruption, skin exfoliation

 

 

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Link to post
  • Administrator
Altostrata

Good Googling, @ChessieCat!

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
IsThereLight

 

@Altostrata

Thank you for your help @ChessieCat

 

 

I have read the sites that you suggested in my own research and unfortunately not found them helpful to my problem.

 

Just a couple of things to note:

  • What I am experiencing is not "acne". It is blistering which turn to sores - a bit more like chicken pox. I am literally bubbling up all over more akin to a rash, although not red,(bumps filled with clear liquid) than acne.
  • The sores seem to "fill up" or become more "active" at certain times of day
  • The blistering/sores and all skin problems began when I went off of Cymbalta (60mg cold turkey) last Spring.
  • I was on Latuda for 4 years and never had any significant skin problems- so they did not "disappear" and come back as you suggested. I went off of it in September and only reinstated @ 1mg at Christmas. REMOVAL of Latuda MAY have exacerbated the issue but if that is the case then (as I was hoping) reinstatement should be helping and it does not seem to be.
  • The sores/blisters/crusting on my scalp is new in the past weeks, but as I can tell from my digging on the issue it is more akin to seborrheic dermatitis - which they do claim there can be some link to nervous system disorder. There are numerous ways suggested to treat this OTC and home remedy but none seem to be helpful in making it stop.
  • Dermatologist was clueless

I assure you that I am "researching" this daily and have read hundreds of sites and all the comment sections for each drug- and for drug reactions in general. I am working hard to try to help myself I was just hoping by asking here if anyone has experienced, gotten a diagnosis or found ways to mitigate this issue. It is beginning to feel like my problem is not that common which is even more troubling.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Moderator Emeritus
ChessieCat
16 hours ago, ChessieCat said:

Postmarketing reports: Bullous dermatitis, maculopapular rash, pustular rash, severe cutaneous reactions, skin eruption, skin exfoliation

 

From the quote in my last post there have been various descriptions of skin issues.

 

People may be using the terms "acne" and "pimples" as a general description.

 

Throughout my life (even whilst at school and not on medications) I have got small blisters on different parts of my hands when I've been under a lot of stress.  I always called them "stress pimples".  One of my daughters has recently started getting them after suffering from anxiety for the last few years.  Mine start as a small area (no more than 1/2 inch) of tiny raised spots full of liquid and can sometimes get itchy and I would break them.  Once broken sometimes the area becomes dry and cracked.

 

So Latuda may not be the (direct) cause.  It might just be a simple case of your body/nervous system being stressed, which could be from external stress (2020 = covid, riots, US election) and/or stress caused by drug changes.  Continuing to worry about it will probably only make it worse.

 

 https://www.mayoclinic.org/diseases-conditions/dyshidrosis/symptoms-causes/syc-20352342

 

Quote

 

Risk factors for dyshidrosis include:

  • Stress. Dyshidrosis appears to be more common during times of emotional or physical stress.

 

 

 

https://en.wikipedia.org/wiki/Dyshidrosis

 

Finger Pompholyx 1.tif


 

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Link to post
  • Moderator Emeritus
ChessieCat

And yes the scalp issues might also be caused by stress.  I did a search using the words:  scalp issues skin stress

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Link to post
IsThereLight

@ChessieCat

I think you may be on to something with the stress pimple thing. I've just never had this kind of reaction to stress - and believe me, I've had my share.

 

I definitely have stress that is exacerbated by my fragile nervous system - recently I feel it physically, waves of emotion, tingling in my scalp, chest pressure, which is not "normal" over my lifetime. But who knows, I've been numbed to the world for 10 years with a chemical lobotamy, maybe I'm just not well equipped to handle much anymore.

 

Other than reducing stress, which I am constantly trying to do, do you have any thought on how to topically treat it? Or food/supplements that might help?

 

I do appreciate the time you are spending to talk this through with me. 

Thank you

K

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
IsThereLight

I'm sorry for asking for treatment thoughts. It is right there in the link you sent. I'm seeing a new dermatologist that is more focused on pathology on Monday. Hopefully they will have more thoughts on the issue- ie. something stronger.

 

 

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Moderator Emeritus
ChessieCat

You might consider setting a reminder for several times during the day and do some relaxation and/or mindfulness.  This can help you to keep the stress at a lower level instead of it building up.  Do it every day, even if you don't feel like you are stressed, and it ends up becoming a habit and you can get to the stage that you don't need to set a reminder but you can end up more in tune with yourself and then it is easier to notice when things start affecting you and the response is more automatic.

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from 17 Apr 2021:  Pristiq 0.2665mg  now holding each dose for 3 weeks

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

Link to post
  • Administrator
Altostrata

Hello, how are you?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
IsThereLight

Hi Alto,

On Saturday, I would have said I was doing great but I must have gone from a window to a wave as I started feeling anxious yesterday and had terrible nightmares last night.

 

Although the wave is less severe than it was last time, presumably because I reinstated a bit, I was pretty emotional this morning and then physically uncomfortable after an event today. Someone yelled aggressively at me, very angry/frustrated with my condition and issues....rightly so to be frustrated, it is tough to deal with all of this. But my body physically reacted in a way I've never experienced (I'm not yelled at much). My whole body was tingling, I had a knot in my chest, ringing in my ears and I was "freezing" (temperature regulation) for hours. The sores on my face/scalp swelled. I also fell asleep for 4 hours in the middle of the afternoon. 

 

I'm feeling better this evening, as usual. Any thoughts on this?

 

Also, went to a "better" dermatologist about skin issues today. She could not give me a diagnosis and asked me to come back next week so she could doresearch on protracted withdrawal, nervous system issues & skin/breakouts and why I'm having this issue. She's more into the pathology end of dermatology and she truly had no clue what was going on. No prescription, no insight but willing to put in the time to do some research - I suppose that is the best I can ask for.

 

Thanks for asking, hope you are doing well.

 

 

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • Administrator
Altostrata

We see that people's nervous systems often become sensitized by going on and off drugs, withdrawal syndrome, and adverse reactions to drugs.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
  • 1 month later...
IsThereLight

Hi @ Alto and All,

 

It has been over a month since I last posted and I thought it would be good to bring this thread up to speed on my recovery. Although my case does not seem to have sparked much interest from the group (outside the moderators), I am sure that is due to the fact that most of my issues presumably stem from my withdrawal from Latuda which is not an "anti-depressant" but rather an "anti-psychotic" - in my case prescribed for depression. I haven't come here today looking for help, only to give follow-up information for anyone who may be looking for information about Latuda or my weird skin issues in the future. My post will also confirm what is commonly noted: that it is a slow and bumpy process but THERE IS LIGHT at the end of the tunnel and where I once wondered if I would ever see signs of it, I now am very hopeful for recovery.

 

When I last posted, I had just seen a Dermatologist who specializes in pathology (rather than mostly cosmetic) and I was hopeful that she would be able to help me. She had a wonderful bedside manner, was fascinated by my circumstances and offered to go do research on my skin issues (as outlined in past posts) to see if she could help. Unfortunately, she was not able to nail down the root of the problem or how to fix it. She consulted with other research Derms a couple of whom recommended acytl Cyctine as a supplement but when I asked if it would stimulate my nervous system in any way, she confirmed that it would so we agreed that would not be an ideal situation. She also offered "light therapy" suggesting that sometimes skin issues get started and will keep occurring until something prompts it to stop. It would require 3 times per week at her office and would only be on my face and neck. This is an option, but I am also breaking out on my chest and back, though to a lesser extent. I also live 45 minutes from her office. In the end, we decided to put that idea aside for now and begin using ACZONE (Dapsone) in a twice daily effort to slow the spread and lessen the healing time of the breakouts. I used this product early on last fall as a spot treatment (because it is very expensive) and it did not do much to help, but I agree to try again as an all over treatment. (this has been about 2 weeks now).

 

The ACZONE may be helping as my skin issues continue to improve overall. It is certainly not a quick fix; and my gut tells me it is not the acne med that is making a difference as I am only using it on face and neck but I am seeing improvement all over. I think that I am finally "plateauing" in an overall sense since my reinstatement and I think the gradual improvement of the skin issues is due to that. My "windows" and "waves" process is happening as predicted by many others and I haven't had a VIOLENT wave since I last posted (mid-Jan) which took me into a very deep despair, emotional overload & physical responses (chest pain) that I hadn't had in that degree of intensity since I first went off of Latuda in the fall. Since this wave, I have been gradually feeling better than I have in years on some days. I have at least a 3 day wave of feeling generally unwell each week, but it is followed-up by feeling like my old self again. The windows are getting longer gradually and I'm finally feeling hopeful.

 

After reinstatement, I am holding at 2 mg of Latuda. I was having such trouble working with accuracy of a small dose that I took my prescription to a Compounding Pharmacy and they turned an 80mg tablet of Latuda into a suspension liquid so that I will have an easier time measuring and dosing down over time. This has been really great as the smallest dose of Latuda comes in at 20mg tabs - and is astronomically expensive. I have plenty to work with over the next year or so.

 

I finally made it out of the house for a dinner out with my husband and friends a couple times. I can't make it too late/long but it is a step. I'll be thrilled when I do not wake up with ramped-up anxiety in the mornings, but that too is a vast improvement over the literal terror I experienced for months. Right now, the wake up, skin issues, scalp burning sensation, small anxiety rushes during the day, tiredness in the afternoon(which is new) and shortness of breath are my main issues. This is a VAST improvement for which I am incredibly grateful.

 

Hope all are improving too. I often think about this community and many others out there who are suffering through something that is largely not understood and for which only time really will heal. I am sending continuous "good vibes", prayers, and well wished for all those that need it. 

 

As always, thanks for listening

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
  • 1 month later...
sanderella57

IsThereLight, I'm reading your post and it sure reminded me of something I just read yesterday in the drug insert for Lamical (it's the longest drug insert I've come across yet. 70 pages) I'm just sharing information. 'What is the most important information I should know about LAMICTAL?
1. LAMICTAL may cause a serious skin rash that may cause you to be hospitalized or even cause death'. On page 65. [https://www.accessdata.fda.gov/drugsatfda_docs/label/2021/020241s064,020764s057,022251s028lbl.pdf#page=65] 

 

IsThereLight, yes, there is light at the end of the tunnel. I was heavily drugged for 35 years w/ECT's to treat the drug-induced severe depressions, followed by ALL cold-turkey withdrawals at the end of those 35 years (Effexor, Trazodone, Lithium, Klonopin), and I don't need to tell anyone what a horror show that is. I've been drug Free 6+ years, doing great aside from permanent cognitive impairment that I work with, instead of against now. But all I've done since barely surviving my c/t withdrawals is research psychiatric drugs and share information with others, because I too was denied help from my Medical & mental healthcare workers that left me to die at home, alone. Never believing a word I said as I descended into the world of pure HELL, that many others tragically have too. 

 

Your ongoing suffering sounds utterly horrible and reading comments left by others always leaves me in tears. Please hang in there, arm yourself with knowledge, and never give up. Our true healing begins when others hear us, believe us, and understand our suffering and this is something I was denied from my Mental Health workers for 35 years, but thanks to angels like Alto, and so many other dedicated websites we get help there.

 

I'm sending you all the love in my heart today, hope it adds to your healing. 

 

 

 

 

1998 - 2013 - Klonopin June 6,2013 cold-turkey withdrawal

1979 -2013 - 50+ drugs, Dec 2013 Effexor, Trazodone, Lithium cold-turkey withdrawals

2014 Forced psychiatric drugs inside Forrest View Psychiatric Hospital & withdrew quickly. 

2014 Completely drug free 

Link to post
sanderella57

IsThereLight, I understand your feelings of shame & guilt for the condition you're in having family members around. But we've been shamed by the entire Medical field enough, don't own it. Let it go. Chin up, and carry on my dear. 

1998 - 2013 - Klonopin June 6,2013 cold-turkey withdrawal

1979 -2013 - 50+ drugs, Dec 2013 Effexor, Trazodone, Lithium cold-turkey withdrawals

2014 Forced psychiatric drugs inside Forrest View Psychiatric Hospital & withdrew quickly. 

2014 Completely drug free 

Link to post
  • Administrator
Altostrata

Yes, it is possible you have an allergy or sensitivity to Latuda.

 

How much are you taking now? How are you feeling? Have your symptoms continued to improve?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post
Ebee12058
On 2/18/2021 at 2:09 PM, IsThereLight said:

Hi @ Alto and All,

 

It has been over a month since I last posted and I thought it would be good to bring this thread up to speed on my recovery. Although my case does not seem to have sparked much interest from the group (outside the moderators), I am sure that is due to the fact that most of my issues presumably stem from my withdrawal from Latuda which is not an "anti-depressant" but rather an "anti-psychotic" - in my case prescribed for depression. I haven't come here today looking for help, only to give follow-up information for anyone who may be looking for information about Latuda or my weird skin issues in the future. My post will also confirm what is commonly noted: that it is a slow and bumpy process but THERE IS LIGHT at the end of the tunnel and where I once wondered if I would ever see signs of it, I now am very hopeful for recovery.

 

When I last posted, I had just seen a Dermatologist who specializes in pathology (rather than mostly cosmetic) and I was hopeful that she would be able to help me. She had a wonderful bedside manner, was fascinated by my circumstances and offered to go do research on my skin issues (as outlined in past posts) to see if she could help. Unfortunately, she was not able to nail down the root of the problem or how to fix it. She consulted with other research Derms a couple of whom recommended acytl Cyctine as a supplement but when I asked if it would stimulate my nervous system in any way, she confirmed that it would so we agreed that would not be an ideal situation. She also offered "light therapy" suggesting that sometimes skin issues get started and will keep occurring until something prompts it to stop. It would require 3 times per week at her office and would only be on my face and neck. This is an option, but I am also breaking out on my chest and back, though to a lesser extent. I also live 45 minutes from her office. In the end, we decided to put that idea aside for now and begin using ACZONE (Dapsone) in a twice daily effort to slow the spread and lessen the healing time of the breakouts. I used this product early on last fall as a spot treatment (because it is very expensive) and it did not do much to help, but I agree to try again as an all over treatment. (this has been about 2 weeks now).

 

The ACZONE may be helping as my skin issues continue to improve overall. It is certainly not a quick fix; and my gut tells me it is not the acne med that is making a difference as I am only using it on face and neck but I am seeing improvement all over. I think that I am finally "plateauing" in an overall sense since my reinstatement and I think the gradual improvement of the skin issues is due to that. My "windows" and "waves" process is happening as predicted by many others and I haven't had a VIOLENT wave since I last posted (mid-Jan) which took me into a very deep despair, emotional overload & physical responses (chest pain) that I hadn't had in that degree of intensity since I first went off of Latuda in the fall. Since this wave, I have been gradually feeling better than I have in years on some days. I have at least a 3 day wave of feeling generally unwell each week, but it is followed-up by feeling like my old self again. The windows are getting longer gradually and I'm finally feeling hopeful.

 

After reinstatement, I am holding at 2 mg of Latuda. I was having such trouble working with accuracy of a small dose that I took my prescription to a Compounding Pharmacy and they turned an 80mg tablet of Latuda into a suspension liquid so that I will have an easier time measuring and dosing down over time. This has been really great as the smallest dose of Latuda comes in at 20mg tabs - and is astronomically expensive. I have plenty to work with over the next year or so.

 

I finally made it out of the house for a dinner out with my husband and friends a couple times. I can't make it too late/long but it is a step. I'll be thrilled when I do not wake up with ramped-up anxiety in the mornings, but that too is a vast improvement over the literal terror I experienced for months. Right now, the wake up, skin issues, scalp burning sensation, small anxiety rushes during the day, tiredness in the afternoon(which is new) and shortness of breath are my main issues. This is a VAST improvement for which I am incredibly grateful.

 

Hope all are improving too. I often think about this community and many others out there who are suffering through something that is largely not understood and for which only time really will heal. I am sending continuous "good vibes", prayers, and well wished for all those that need it. 

 

As always, thanks for listening

Hi IsThereLight, I'm so glad you are doing better. ❤ Can you tell me how long you were off Latuda before you reinstated? It's been almost 8 weeks since my last dose, & I'm debating reinstatement bc life feels not liveable like this.

2004-2012 Lexipro 15 mg (CT'd 4 times during this period. Not sure exact dates).

Dec 2014-June 2017 Lexipro 15 mg CT WD agitation, Anhedonia from kindling while taking Feb 2018-Oct 2019 Lexipro 15mg, more severe Anhedonia while taking, CT WD depression May 2020- Sept 2020 Wellbutrin 300mg, OCD, anxiety, while taking, CT, WD anxiety, depression Dec 2020 Wellbutrin 150mg 3 days stop CT WD anxiety, depression, suicidal durations (seemed to stop once drug out system)

Dec 2020 Buspirone 10mg 2.5 weeks, extreme severe Anhedonia while taking, Anhedonia stopped once stopped buspirone, WD cycling anxiety, depression, suicidal ideations Jan 2021 Reinstated Buspirone 5mg 1 month, tapered from 5mg to 1.25mg, experienced severe Anhedonia while taking, WD anxiety, depression, hyperarousal, photophobia, headaches, hyperacusis, early waking.

 

 

 

 

 

 

Link to post
IsThereLight

@sanderella57@altostrata

 

Dearest Sandy and Alto,

 

Thank you so  much for your kind words and hopeful insight. It is still shocking to me how many people have been "injured" by Big Pharma. It's becoming harder and harder to believe that it is not on purpose. Once hooked, hooked for life or sheer hell to get out. What a lovely business model. My heart hurts for you and what you have been through. Thank you so much for reaching out to me......

 

Yes, Lamictal has warnings against deadly skin rash but I was on the drug for 4 years without any skin issues. It was only upon the removal of Celexa & Lamictal (I'm not sure which one caused the skin problems as it started after the Celexa cold turkey and during the ramp down of Lamictal. 

 

This "reaction" is the craziest thing I've ever experienced but it is getting better VERY SLOWLY. It started off as very deep sores that lasted months and oozed clear liquid. I am now at surface bumps filled with liquid that break open and slowly emit fluid that crusts over (not like a scab) on my face, chest, shoulders back, neck and scalp. The dermatologists have no solution and really no clue what is happening. It is very clear to me that it is related to my cycles of "waves & windows" as I produce more "fluid" and sores right before I go into a 4-7 day downward spiral. Albeit, the waves are "better" and the windows have gotten so good that I'm energized enough for Spring cleaning (Oh, joy!) The emotional roller coaster is tough to bear, though, as windows provide such hope for the future and waves put me back on my knees.

 

My college student "children" have gone back to school so they are not around all the time....however, I think everyone's defense mechanisms have kicked in and Mom/Wife suffering is just a routine thing. I've found that people have a limited supply of empathy once they've reached out with love and kindness and realized that they cannot "help" the matter and their lives just go on. In many ways, it is just easier to accept (ignore) and keep moving on with life. I see this with everyone. That is not to say that I want ANYONE to be wrapped into my cycle of "healing" but it is an amazing experience watching those around me "cope" with their "loss" of me. But I digress. The suffering is the "new normal" and everybody needs to just keep on keeping on.

 

I am taking a suspension liquid and I am now down to 7ml/day. I tried to go to 6 and I was hit with a wave. I don't know for sure if the reduction caused the wave, as the waves keep coming, but I went back to 7 to try to help any way I could.

 

Thank you, again, for your thoughtfulness.

 

Light

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
IsThereLight

@Ebee12058

 

Hi,

I went off mid-September and was determined to make it to New Years as a goal. I made it to Christmas before I reinstated. Looking back, I wish I had done it sooner. I just kept hoping that the whole thing would get better the longer I stayed off. I think two months is probably a good indicator whether or not you are going to walk away from the med without prolonged physical/psychological "torture". At this point, you probably could use a reprieve and a low dose reinstatement really did wonders for me. IT DID NOT SOLVE EVERYTHING...obviously, as I am now in a cycle of "windows and waves" instead of constant issues, but it sure notched down the intensity. 

 

Best of luck to you... there is light at the end of the tunnel. I have to believe this.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
Ebee12058
3 hours ago, IsThereLight said:

@Ebee12058

 

Hi,

I went off mid-September and was determined to make it to New Years as a goal. I made it to Christmas before I reinstated. Looking back, I wish I had done it sooner. I just kept hoping that the whole thing would get better the longer I stayed off. I think two months is probably a good indicator whether or not you are going to walk away from the med without prolonged physical/psychological "torture". At this point, you probably could use a reprieve and a low dose reinstatement really did wonders for me. IT DID NOT SOLVE EVERYTHING...obviously, as I am now in a cycle of "windows and waves" instead of constant issues, but it sure notched down the intensity. 

 

Best of luck to you... there is light at the end of the tunnel. I have to believe this.

@IsThereLight I've been debating reinstatement. Today is exactly 2 months since my last dose. But I experience debilitating Anhedonia while on antidepressants, which is why I did the quick taper. I'm experiencing terrible wd, but I don't think I could live with the Anhedonia for a long taper. And it gets more severe every time I stop & restart the antidepressant. I just have to pick my poison, I guess.

2004-2012 Lexipro 15 mg (CT'd 4 times during this period. Not sure exact dates).

Dec 2014-June 2017 Lexipro 15 mg CT WD agitation, Anhedonia from kindling while taking Feb 2018-Oct 2019 Lexipro 15mg, more severe Anhedonia while taking, CT WD depression May 2020- Sept 2020 Wellbutrin 300mg, OCD, anxiety, while taking, CT, WD anxiety, depression Dec 2020 Wellbutrin 150mg 3 days stop CT WD anxiety, depression, suicidal durations (seemed to stop once drug out system)

Dec 2020 Buspirone 10mg 2.5 weeks, extreme severe Anhedonia while taking, Anhedonia stopped once stopped buspirone, WD cycling anxiety, depression, suicidal ideations Jan 2021 Reinstated Buspirone 5mg 1 month, tapered from 5mg to 1.25mg, experienced severe Anhedonia while taking, WD anxiety, depression, hyperarousal, photophobia, headaches, hyperacusis, early waking.

 

 

 

 

 

 

Link to post
JustBella

@Altostrata

your response Jan 11:
We see that people's nervous systems often
 become sensitized by going on and off drugs, withdrawal syndrome, and adverse reactions to drugs.

 

My question:

Does the sensitized nervous system heal after these experiences?  

 

 

Mid and late 1990s various antidepressants including Prozac, Pamelor, Zoloft, Trazadone for brief periods of time  Usually one month or less with no taper.

1998 to August 2020   .5 mg lorazepam, first PRN then daily. CTed Jan 2015 RI March 2015 (6 wks): CTed October 2016 RI Nov 2016 (3 wks (October 2016). 10 month taper begin Oct 2019 finished Aug 10, 2020. 2000 to Sept 2015 periodic use Escitalopram 10 mg.  Brief periods, 3-6 months, with rapid tapers or cold turkeys.Oct 2016 Cymbalta and Remeron for a period of about 2 weeks. Stopped cold turkey.Nov 2016 to October 2017 10 mg escitalopram.  One month taper

Last 2 ½ years:

Ongoing daily .5 lorazepam originally began in 1998 PRN, then daily 2008.  March 2019 to August 2019 10 mg escitalopram; rapid taper about 3 weeks. Sept 2019 to Sept 2019 Pristiq 25mg, taken 2 weeks then a every other day taper for one week.  25 mg trazadone for one week, no taper.  Zoloft 25 mg for 5 days, no taper. October 2019 -August 2020 10 month taper from .5 lorazepam.

Currently taking Valsartan 40 mg daily and Preservision AREDS2 one capsule daily.

Link to post
IsThereLight

@Ebee12058

 

Pleasure? Joy? LOL - I haven't known those concepts for over 10 years, maybe 15, maybe 20...but it never occurred to me (except the sexual side effects) that it was a antidepressant side effect and there was a name for it. Anhedonia. 

I used to tell my husband that I just didn't know what had happened to me. I used to be so fun-loving and adventurous and found so much joy in life but it all seemed to just go away- maybe that is why I thought I had depression! I thought maybe it was from the stresses of life and just being worn down. This is a crushing revelation, actually.

 

Thank you. I'm sorry you have had to experience Anhedonia in ever increasing amounts and it, too, is unbearable. I guess, as you say, you have to pick your poison. I'm sending my thoughts and prayers your way tonight. Press on! You will get through this.

2014 Lamictal

2014-2016 Latuda, Lithium

2016-2020 Latuda, Cymbalta, Trazadone, Adderall

April 2020 - Stopped Trazadone

May 2020 - Stopped Cymbalta 60mg

July 2020 - Reduced Latuda 40mg - 20mg

Aug 2020 - Reduced Latuda 20mg - 10mg, stabilized

Sept 2020- Stopped Latuda @ 10mg

Link to post
Ebee12058
10 minutes ago, IsThereLight said:

@Ebee12058

 

Pleasure? Joy? LOL - I haven't known those concepts for over 10 years, maybe 15, maybe 20...but it never occurred to me (except the sexual side effects) that it was a antidepressant side effect and there was a name for it. Anhedonia. 

I used to tell my husband that I just didn't know what had happened to me. I used to be so fun-loving and adventurous and found so much joy in life but it all seemed to just go away- maybe that is why I thought I had depression! I thought maybe it was from the stresses of life and just being worn down. This is a crushing revelation, actually.

 

Thank you. I'm sorry you have had to experience Anhedonia in ever increasing amounts and it, too, is unbearable. I guess, as you say, you have to pick your poison. I'm sending my thoughts and prayers your way tonight. Press on! You will get through this.

@IsThereLightI'm so sorry these drugs have also stolen the "you" from you: your joy, your quirks, the life inside of you. I didn't realize it was the drugs until a little over a year ago- & I've been on & off these drugs for 18 years. But bc of kindling from stopping & restarting lexipro, my Anhedonia became extremely pronounced. (Rather like wd anxiety & depression feel "chemical" or outside yourself bc of their severity). But I believe strongly, & the Lord has told me, that I will heal, Anhedonia & all. And I believe this for you too.

2004-2012 Lexipro 15 mg (CT'd 4 times during this period. Not sure exact dates).

Dec 2014-June 2017 Lexipro 15 mg CT WD agitation, Anhedonia from kindling while taking Feb 2018-Oct 2019 Lexipro 15mg, more severe Anhedonia while taking, CT WD depression May 2020- Sept 2020 Wellbutrin 300mg, OCD, anxiety, while taking, CT, WD anxiety, depression Dec 2020 Wellbutrin 150mg 3 days stop CT WD anxiety, depression, suicidal durations (seemed to stop once drug out system)

Dec 2020 Buspirone 10mg 2.5 weeks, extreme severe Anhedonia while taking, Anhedonia stopped once stopped buspirone, WD cycling anxiety, depression, suicidal ideations Jan 2021 Reinstated Buspirone 5mg 1 month, tapered from 5mg to 1.25mg, experienced severe Anhedonia while taking, WD anxiety, depression, hyperarousal, photophobia, headaches, hyperacusis, early waking.

 

 

 

 

 

 

Link to post
  • Administrator
Altostrata
On 4/7/2021 at 1:13 PM, JustBella said:

@Altostrata

your response Jan 11:
We see that people's nervous systems often
 become sensitized by going on and off drugs, withdrawal syndrome, and adverse reactions to drugs.

 

My question:

Does the sensitized nervous system heal after these experiences?  

 

 

 

Yes, the nervous system is continually adjusting. Positive changes may be so gradual, you don't feel them.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy