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icerose87

MOD NOTE:  This is Gemma92's topic.  Before Gemma joined SA her sister icerose posted requesting assistance.  I've merged the two topics so that all of Gemma's history is in one place.

_________________________________

 

Hello. I am new here,  and I’m posting on behalf of my 26 year old sister who has been in a psychiatric unit for a week.

 

My sister has a history of mild depression and functionable anxiety. She had occasional bouts of anger, periods of intense fatigue, and nightly hallucinations usually during sleep paralysis. She started having occasional  panic attacks a few years ago. (The only psychiatric medication she had been on prior was Prozac during her childhood.) Despite her struggles , she was generally happy and enjoyed life.

 

In August 2017, she had her right thyroid removed due to the growth of a large, benign nodule. Her anxiety slowly seemed to increase over the months and she experienced a panic attack after taking Benadryl (something that never happened before when taking Benadryl.)

 

To help combat her anxiety, she started taking 10 mg of Lexapro in May 2018. Not knowing the danger of taking it intermittently, she took it whenever she remembered. Her doctor increased her dose to 20 mg which she took daily for 2 weeks. In early July, she developed strep symptoms, but tested negative for strep throat. Her doctor diagnosed her with laryngitis.

 

Her throat hurt so bad, that she cold turkeyed off Lexapro because it hurt to swallow the pills. She continued to show symptoms of strep throat and was finally diagnosed on July 4, 2018.

 

After 2 doses of Penicillin (and a couple days off Lexapro) she experienced an episode lasting a couple hours where her moods alternated between intense fear (needing to hold Mom’s hand, impending doom, confusion, depersonalization, terror from Hell) and fits of giddiness (giggling, silly talk). She hallucinated once during this episode (shadow in kitchen.) She stopped taking the Penicillin because she thought it caused the episode. Her doctor told her the strep would probably go away on its own.

 

A week later, she noticed swollen lymph nodes on her neck (near collar bone.) She started another antibiotic which she finished. She started noticing increasing anxiety in the morning that would subside at night. She took Effexor for 5 days, but cold turkeyed because she thought it was worsening her anxiety. She lost her appetite around this time and had to quit her job.

 

At the end of August 2018, she admitted herself into a psychiatric unit for 5 days. On one of the days, she had a fever and sore throat. It was not addressed. They put her back on Lexapro at 5 mg which she took daily for 1 month. During this time, she also took 0.5 mg of Lorazepam as needed. (10 pills over the course of a month) She cold turkeyed again off the Lexapro and Lorazepam because of bad heartburn and no help with anxiety. 

 

After this, she developed physical symptoms such as bad night vision, light sensitivity, ear ringing (stopped as of now), cold sweats (stopped as of now), bone chilling cold, dizziness, nausea, poor appetite, extreme weakness, chest pain (went to ER twice because she thought it was a heart attack), and mucus in her stool which was ongoing since before Lexapro.

 

Her mental symptoms increased as well. Her anxiety became “anxiety from Hell” that resided in the pit of her stomach. She experienced impending doom (worse upon waking up), crushing depression, hopelessness, and inconsolable crying spells where she appeared to be very agitated. She obsessed over her health and started doing research. She self diagnosed herself with Lexapro withdrawals, adverse reactions, kindling, neurotoxicity, and brain damage. 

 

After seeing a psychiatrist on October 23, 2018, she started 15 mg of Mirtazapine. It dulled the massive anxiety, but brought out rage, verbal aggression, and threats directed at her family. She cold turkeyed the Mirtazapine after 6 days (last day was 7.5 mg). Her rage went down and her anxiety went back up. 

 

A few days later, she had a few hours a day where she felt like herself. (Was it the Mirtazapine starting to work?)

 

A couple days before Thanksgiving, she went to the ER after a day of inconsolable crying, anxiety, and impending doom. They sent her home saying “there are too many questions marks in this case so follow up with your psychiatrist.”  She had another intense crying/anxiety episode the following day where she was begging for help and immediate relief. She had stopped eating and drinking as was planning her suicide by starvation or going out to the woods to die.

 

She went back to the ER via ambulance and was admitted into the psychiatric unit. After almost a week of refusing meds, she agreed to try 7.5 mg of Mirtazapine. It’s been 3 days since then and she is experiencing numbness in her head and discomfort on the ride side of her body. They are suggesting an antipsychotic (Zyprexa) or electroshock therapy.

 

Since this nightmare began, she never stabilized on any medication and cold turkeyed off everything.

 

She keeps calling me and begging me for advice. I don’t know what to do because I don’t know what’s wrong. No one has an answer. I thought maybe she had Lyme but her test came back negative. I thought maybe she had PANDAS because of the strep. Or maybe it is the fact she never stabilized on medication and kindled her brain.

 

I came here for hope though because I’ve been lurking for a month and I know many of you have recovered from many years of psychiatric drugs and withdrawals. She wasn’t even regularly on anything for more than a month or two at a time.

 

So we need to get her stabilized and we can begin to treat underlying issues. My question is how do we do that?

 

Edited by ChessieCat
added note after merging topics

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Songbird

Hello icerose, welcome to SA.  I'm so sorry your sister had to go through all of that, but pleased you have found us. 

 

It's possible that the thyroidectomy may have contributed to her anxiety, I believe strep throat can cause all kinds of complications, and I also believe it's possible that the penicillin may have triggered her mood swings and psychotic episode.

 

With all of this going on, starting and stopping several psych meds has confused the situation even further.  Unfortunately, we don't have any magic recipes for instant relief.  I agree that the aim should be to stabilise, but it may be that some ongoing symptoms can't be immediately fixed.  I think it's very likely that all the changes have caused a lot of confusion in her brain.  She currently has numbness in her head and discomfort on the right side of her body - any other symptoms?  Is she still taking the mirtazapine?  Did mirtazapine help for the anxiety, doom, and so on? 

 

Here are some topics with information you may find useful:

What is withdrawal syndrome

the rule of 3KIS - keep it simple keep it slow keep it stable

 

It can be difficult to help someone through a third party - do you think your sister would be willing and able to join SA as a member herself? 

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Songbird

On rereading your post, I'm wondering - is your sister still in the psychiatric hospital or has she come home?

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icerose87

My sister is still in the psychiatric ward and she will not have access to the internet when she returns. She scares herself with all the horror stories and medication side effects which leads her to stop her medication cold turkey, hurting herself more. So I will have to be her advocate. 

 

She is currently experiencing aches and pains, a common side effect of Mirtazapine. It helped the intense anxiety in the pit of her stomach, but she’s still experiencing impending doom. She started 2.5 mg of Zyprexa 2 days ago and her appetite has returned. (It was either Zyprexa or electro shock...kind of a double edged sword.)

 

Our goal is again, to stabilize her and then try to figure out what happened. She had a hair mineral analysis done which shows all kinds of issues. Her calcium and magnesium are too high - especially calcium. She is very low in many minerals. 

 

As as far as this being a Lexapro withdrawal, she never had brain zaps or insomnia which I believe are very common withdrawals symptoms. This leads me to believe this is more of a kindling situation in need of stabilization. 

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icerose87

Can You Heal While on Medicine?

 

Hi. This is my second post regarding my sister, Stacie. (She is not allowed internet use because it makes her worse.)

 

To briefly summarize her situation, she has a history of anger, night hallucinations, mild anxiety, fatigue, and panic attacks. She started Lexapro (10 mg) in May 2018. She went up to 20 mg for 2 weeks in late June and (2 weeks later) in July, she caught strep throat, cold turkeyed her Lexapro and struggled to finish 3 antibiotics because of increasing anxiety. The anxiety followed a wave/window pattern. She felt normal at night and riddled with anxiety during the morning/day. Doctors blew her off.

 

After 6 weeks and a psych unit stay, she went back on Lexapro at 5 mg and Lorazepam at 0.5 mg. (The Lorazepam was as needed. I think she took it for 15 days.) After a month, she cold turkeyed Lexapro and Lorazepam. 

 

Then she got really bad. Her windows closed and she started experiencing physical symptoms such as dizziness, light sensitivity, and chills. The anxiety grew to an extreme level and was mixed with impending doom. She lost her appetite.

 

She tried Mirtazapine (15 mg) for 6 days in October, but stopped and was admitted into the psychiatric unit again in November. They put her back on Mirtazapine and Zyprexa. The sedative effects seemed to work the first week and then she was back to her terrible state.

 

After a third stay in the psychiatric unit in December, she came home with no improvement. She is currently taking 30 mg of Mirtazapine and 2.5 mg of Zyprexa.

 

She’s been on these medications for one month and has not stabilized although her appetite has improved. Her “chemical anxiety” is gone and the knot in her stomach is gone. She is still struggling though and needs 24/7 supervision because she’s very suicidal. 

 

She wants to cold turkey her meds yet again because she doesn’t believe she can heal while on meds. Is this true? My theory is that she can still heal the parts of her brain that were kindled by Lexapro because she’s not on an SSRI now.

 

Please help with any advice. We still don’t know what the heck happened. She wasn’t even on these meds for a long time!

 

 

Edited by ChessieCat
added topic title to post before merging with existing intro

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icerose87

Thank you for the link. Can she stabilize on a medication she’s not withdrawing from? Can she heal from her withdrawal from Lexapro/lorazepam while trying to stabilize on Mirtazapine and Zyprexa?

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ChessieCat

Additional information quoted from other topics:

 

2 hours ago, icerose87 said:

Can you stabilize on Mirtazapine when you’re withdrawing from Lexapro (and possibly Lorazepam)? My sister cold turkeyed Lexapro twice before even knowing about withdrawal and has been in Hell for 6 months. She’s been trying to stabilize on Mirtazapine and Zyprexa for one month. Her appetite is back and it took the edge off the anxiety but she’s still very suicidal. What do we do now?? Can the Mirtazapine kick in later on?

 

4 hours ago, icerose87 said:

But can you stabilize on a drug you’re not withdrawing from? It’s too late for my sister to reinstate Lexapro (cold turkeyed twice) and lorazepam. She’s been trying to stabilize on Mirtazapine and Zyprexa. 

 

Also, can she heal from her Lexapro/Lorazepam withdrawal while trying to stabilize on Mirtazapine and Zyprexa? She literally had no choice. She was starving to death her withdrawal was so bad and she wasn’t even on these meds for more than 2 months!

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Altostrata

Hello, icerose.

 

I am sorry your sister is in this situation. I can understand why she's very distressed.

 

It seems possible to me that her initial anxiety after getting a thyroidectomy was too high a dosage of thyroid hormone. This can cause anxiety and sleeplessness. The fix is to reduce thyroid hormone. Some people need a custom compounded dose, the usual tablet dosages are not quite right.

 

See https://health.clevelandclinic.org/underactive-thyroid-is-yours-being-overtreated/

 

This may be the underlying cause for many of her symptoms. If it is, psychiatric drugs might not compensate.

 

After that, I agree with @Songbird  , she's had a series of adverse psychiatric drug reactions that have destabilized her nervous system.

 

On 12/31/2018 at 10:10 AM, icerose87 said:

After 6 weeks and a psych unit stay, she went back on Lexapro at 5 mg and Lorazepam at 0.5 mg. (The Lorazepam was as needed. I think she took it for 15 days.) After a month, she cold turkeyed Lexapro and Lorazepam. 

 

Then she got really bad. Her windows closed and she started experiencing physical symptoms such as dizziness, light sensitivity, and chills. The anxiety grew to an extreme level and was mixed with impending doom. She lost her appetite.

 

She tried Mirtazapine (15 mg) for 6 days in October, but stopped and was admitted into the psychiatric unit again in November. They put her back on Mirtazapine and Zyprexa. The sedative effects seemed to work the first week and then she was back to her terrible state.

 

After a third stay in the psychiatric unit in December, she came home with no improvement. She is currently taking 30 mg of Mirtazapine and 2.5 mg of Zyprexa.

 

Did 15mg mirtazapine help her sleep? Does 30mg mirtazapine help? What effect does 2.5mg Zyprexa have now?

 

What date did she start 30mg mirtazapine and 2.5mg Zyprexa?

 

What times of day does she take her drugs, and their dosages? What are her symptoms before and after she takes her drugs? Is she capable of keeping daily notes on paper about her symptoms, when she takes her drugs, and their dosages?

 

We would like to see a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

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icerose87

She was never on medication after her thyroid surgery. Apparently the other half is still working fine according to tests. She’s also never had insomnia throughout this whole ordeal. Her sleeping has always been fine which I find odd as insomnia is a very common withdrawal symptom. (She says it’s because of her previous chronic fatigue problem.)

 

The 30 mg of Mirtaxapine and 2.5 mg Zyprexa combo has taken away her impending doom and the knot in the pit of her stomach. (She started those doses about 1.5-2 weeks ago.) But it has left her with extreme suicidal thoughts to the point where she cannot be left alone. She lives with my parents. She’s already been in the psych ward 3 times and they do absolutely nothing and treat her like a criminal. My dad is literally to the point of saying, “Just let her die” it’s so bad. She just called me in suicidal hysterics saying she can’t do this anymore. 

 

She takes her meds between 8:30-9 pm and seems quiet afterwards and then goes to sleep. She’s a wreck from the time she wakes up until late afternoon where she’s in less of a Hell and then the Hell picks up a little before she takes her meds.

 

 

Ive been trying so hard to figure out what happened. I’ve been down the chronic Lyme route, PANDAS, thyroid problems, kindling, a legit mental illness...BUT even mentally ill people aren’t in Hell 24/7!!! At this rate, she’s probably going to kill herself. My family is a mess!!!

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Altostrata

Is it possible she's become hyperthyroid? It seems this drug merry-go-round started after the thyroidectomy. Perhaps she had an adverse reaction to something she was prescribed then, aside from Benadryl?

 

28 minutes ago, icerose87 said:

But it has left her with extreme suicidal thoughts to the point where she cannot be left alone.

 

If these started after she increased mirtazapine to 30mg, she's taking too much mirtazapine. If she's only been on 30mg for 2 weeks, she can probably go back to 15mg by reducing by a quarter of a tablet every few days.

 

If they started after she initiated Zyprexa, the drug might be causing them.

 

Or, she could be feeling miserable because she feels miserable, and she needs to manage her thoughts to get through this. See

 

Non-drug techniques to cope with emotional symptoms 

 

Deep emotional pain and crying spells, spontaneous weeping

 

Health anxiety, hypochondria, and obsession with symptoms

 

Dealing With Emotional Spirals

 

36 minutes ago, icerose87 said:

She takes her meds between 8:30-9 pm and seems quiet afterwards and then goes to sleep. She’s a wreck from the time she wakes up until late afternoon where she’s in less of a Hell and then the Hell picks up a little before she takes her meds.

 

We would need more detail about her daily symptom pattern. She could be having drug hangover until the afternoon.

 

Please be aware this is a site for going off psychiatric drugs, not dealing with adverse drug reactions per se. We don't address situations where people are having side effects from drug combinations but otherwise don't intend to go off drugs. It's up to your sister's doctors to manage her drugs.

 

It's unfortunate, but doctors are not knowledgeable about drug adverse effects of any kind.

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ChessieCat
1 hour ago, Altostrata said:

What times of day does she take her drugs, and their dosages? What are her symptoms before and after she takes her drugs? Is she capable of keeping daily notes on paper about her symptoms, when she takes her drugs, and their dosages?

 

We would like to see a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

Example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

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ChessieCat
1 hour ago, icerose87 said:

My dad is literally to the point of saying, “Just let her die” it’s so bad.

 

He is only saying this because he feels so helpless.  He is finding the situation very difficult.  When there is a problem men want/try to fix it.  They feel that they should be able to take care of things/people and when they can't they feel useless.  It's not that your dad doesn't care,  he is just dealing with this situation differently to how you are.

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icerose87

My sister has just been diagnosed with autoimmune encephalitis (PANDAS) and I believe she has it on top of withdrawal. She saw one of the best neurologists in the country who said SSRIs make people with PANDAS worse. 

 

She took Lexapro (10 mg) for less than 2 months and the last 2 weeks were 20 mg. She cold turkeyed the Lexapro at the same time she got a massive case of strep throat. She presented with rapid onset OCD that felt like bad anxiety that came in waves. 6 weeks later, she tried Effexor for 5 days which closed her windows. She went back on Lexapro (5 mg) and Ativan (0.5-1mg). She felt worse and cold turkeyed after a month. She was left with a bunch of physical symptoms and hellish mental symptoms.

 

She tried 15 mg Mirtazapine for 6 days a month later and then stopped because she was afraid it would make her worse. After several hospital stays, she went back on Mirtazapine and started Zyprexa as well.

 

This all happened in a 7 month period. She is currently on 22.5 mg of Mirtazapine and 2.5 mg of Zyprexa. All her physical symptoms are gone. Her mental symptoms are intrusive suicidal thoughts, impending doom, rage, and anxiety from Hell. 

 

She recently had 2 IV steroid and antibiotic treatments. A couple days after it, she had half a day without suicidal thoughts, but they are back with a vengeance. We are in the process of getting more labs and bloodwork regarding the PANDAS. 

 

In the meantime, she NEEDS relief. We are days away from a suicide or hospital commital. We’re going to have to break some rules about the “we don’t recommend supplement” stuff because she is a psychotic, suicidal wreck screaming at everyone, threatening suicide, and having agitated crying episodes on the floor. Help please!!

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Shep
11 hours ago, icerose87 said:

She recently had 2 IV steroid and antibiotic treatments.

 

Please list:

  • The date she had these treatments. 
  • The names of the drugs.

Steroids can cause many problems for people in withdrawal and some antibiotics are very, very dangerous, especially the Fluoroquinolone class of antibiotics. 

 

8 hours ago, DrugfreeProf said:

Love, safety, nutrition, a calm environment, gentle boundaries, and total acceptance of the situation are all elements in the formula.

 

 

Very wise words, DrugfreeP. 

 

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icerose87

My sister is in need of some success stories. She believes she is the worst case scenario and will never heal because she kindled her brain (failed reinstatements during withdrawal.) She asked me to find recovery stories of people who kindled during withdrawal and healed. She is now tapering during her kindled withdrawal and is extremely suicidal. She is a rare case, having only been on Lexapro for 2 months when she cold turkeyed, went into minor withdrawal, reinstated not knowing what was happening, the reinstatement didn’t work and she kept getting worse. (She has autoimmune encephalitis and SSRIs make her worse.) Please help me give her hope. She is a beautiful soul with so much to offer and the world will lose her incredible talents if she gives up and ends her life. Thank you.

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Altostrata
20 hours ago, icerose87 said:

She is currently on 22.5 mg of Mirtazapine and 2.5 mg of Zyprexa. All her physical symptoms are gone. Her mental symptoms are intrusive suicidal thoughts, impending doom, rage, and anxiety from Hell.  

 

She recently had 2 IV steroid and antibiotic treatments. A couple days after it, she had half a day without suicidal thoughts, but they are back with a vengeance. We are in the process of getting more labs and bloodwork regarding the PANDAS. 

 

In the meantime, she NEEDS relief. We are days away from a suicide or hospital commital. We’re going to have to break some rules about the “we don’t recommend supplement” stuff because she is a psychotic, suicidal wreck screaming at everyone, threatening suicide, and having agitated crying episodes on the floor. Help please!!

 

What do you mean, she is "psychotic"? Can she listen to common sense? Can you tell her she's having a drug reaction that will gradually go away?

 

First of all, it's a good sign her physical symptoms are gone. How is she sleeping?

 

What time of day does she take her drugs, do they have any side effects that you can tell? If she's taking Zyprexa and mirtazapine at the same time, why?

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icerose87
19 minutes ago, Altostrata said:

 

What do you mean, she is "psychotic"? Can she listen to common sense? Can you tell her she's having a drug reaction that will gradually go away?

 

First of all, it's a good sign her physical symptoms are gone. How is she sleeping?

 

What time of day does she take her drugs, do they have any side effects that you can tell? If she's taking Zyprexa and mirtazapine at the same time, why?

No, she cannot reason or use common sense. She believes she is permanently damaged no matter how much we try to convince her otherwise. She believes her only choice is death. My parents have agreed to stay out of her way and let her die. She’s planning to die by dehydration in a couple weeks. It’s that bad.

 

She can sleep, but it’s filled with impending doom and head pressure.

 

She takes her drugs at 8:30 pm (at the same time because they’re supposed to make you drowsy.) She can’t tell if there are side effects. 

 

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Shep
15 hours ago, icerose87 said:

No, she cannot reason or use common sense. She believes she is permanently damaged no matter how much we try to convince her otherwise. She believes her only choice is death.

 

Icerose, this is far beyond what an online forum can help with.

 

This is what we require from members who wish to taper. 

 

On 8/21/2016 at 10:16 PM, scallywag said:

What do you mean by self-manage?

 

Dealing with this challenge requires a lot from you, the "taperer". You need to be able to

  • take responsibility for your decisions
     
  • exercise extreme patience
     
  • tolerate discomfort and uncertainty
     
  • communicate truthfully and responsibly about what is going on with you
     
  • identify when you require local, in-person support and then take real-life action to obtain it

 

Please carefully consider your ability to meet the challenges of tapering in the context of both your current wellness and life situation.

 

From what you've written, your sister is not able to meet these standards and participate in her own withdrawal and recovery. She needs on-the-ground help, not an online forum. 

 

You may want to look into finding your sister a doctor that understands this drugs. This is a directory from the Mad in America website which lists doctors that have experience helping people withdrawal from psych drugs: 

 

Mad in America - Provider Directory

 

And a list here on SA:

 

Recommended doctors, therapists, and clinics

 

On 2/10/2019 at 7:16 PM, icerose87 said:

My sister has just been diagnosed with autoimmune encephalitis (PANDAS) and I believe she has it on top of withdrawal.

 

Since the symptoms of autoimmune encephalitis (PANDAS) are some of the same as withdrawal, she needs to work closely with her doctor who is treating her for this condition. If you can get her an appointment with a psychiatrist or therapist who is aware of psychiatric drug withdrawal and have them work together, that will be your sister's best option. 

 

 

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Shep
21 hours ago, icerose87 said:

My sister is in need of some success stories. She believes she is the worst case scenario and will never heal because she kindled her brain (failed reinstatements during withdrawal.) She asked me to find recovery stories of people who kindled during withdrawal and healed. She is now tapering during her kindled withdrawal and is extremely suicidal. She is a rare case, having only been on Lexapro for 2 months when she cold turkeyed, went into minor withdrawal, reinstated not knowing what was happening, the reinstatement didn’t work and she kept getting worse. (She has autoimmune encephalitis and SSRIs make her worse.) Please help me give her hope. She is a beautiful soul with so much to offer and the world will lose her incredible talents if she gives up and ends her life. Thank you.

 

I moved this off the Success Stories forum and placed it here in your thread since this is dealing with your sister's taper. 

 

Also, your continuing reference to your sister's suicidal state can be triggering for our sensitive members. Please limit this use. 

 

There are many success stories of people who have kindled because most people come to this site destabilized. That is not unusual. Your sister case is not "a rare case", but rather, a complicated case, as she's dealing with another illness (PANDAS) that also has a lot of psychiatric-type symptoms (hallucinations, paranoid thoughts, memory loss, agitation, etc). 

 

There are many great success stories that you sister might find reassuring. Here are a couple to start: 

 

Tao of the Brassmonkey

 

pug Your miracle is coming, hang on!

 

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popsicletoes

Icerose, my heart goes out to you.  You and your family are living a nightmare right now. It is an impossibly horrific experience to watch someone you love devolve into someone unrecognizable with no rational explanation. 

 

I am on this forum because I am a mother helping her teenage son taper off his psychotropic medication.  I did read your thread with some interest because I believe my son has had PANS (similar to PANDAS but not necessarily caused by strep) episodes, however, he is complicated because he has also had cancer with brain radiation and chemo directly to his brain and he has been diagnosed with narcolepsy (which is, like PANS, an autoimmune disease) and he has been on and off a number of psychotropic medications for over a decade.  I have come to realize that whatever medical conditions he has, the psychotropic drugs, especially the doctor directed fast tapers off and on, have caused a lot of life-altering issues.

 

Your sister also sounds extremely complicated.  Here is an article that discusses a case with some similarities to your sister.  Perhaps you could contact the doctor from the story?

 

A Medical Mystery

 

    

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Altostrata

icerose, she may be taking too much Zyprexa, which is causing her doomy mood. Please discuss a slight reduction with her doctors.

 

Is she also taking a benzodiazepine such as lorazepam or clonazepam? That can cause a side effect of depression, too.

 

It is understandable that she feels she's lost control of her life, she's ill and in a psychiatric ward. As long as she talks about suicide, they will want to keep her drugged. In the psychiatric unit, she's lucky she's on only Zyprexa and mirtazapine. They're usually a lot more aggressive in getting people to shut up about suicide.

 

If she's sleeping, that's good vis a vis withdrawal syndrome. Her medical condition is so complex, we can't resolve all her symptoms with what we know on this site, we don't treat PANDAS.

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Gemma92
Posted (edited)

Hello. I am severely kindled. I have quite a long story so please bare with me. 

 

I started on Lexapro 10mg in May 2018 for anxiety. I was never really stabalized on the 10mg and just told my doctor that it wasn't helping. She bumped it up to 20mg after a few weeks. She never told me to not just stop taking the drug apruptly. I thought it was like an asprin and I could just stop. Well now it's too late.

 

So after about 2 months on this drug, I came down with strep throat. I was so sick and decided to just stop the Lexapro so I could work on getting myself better. 4 days later, I was put on Penicilln. After about 2 pills, I got extreme DR/DP and started acting all goofy. Then intense fear rushed over me and then about an hour later I was goofy again. I thought it was the Penicilln so I stopped taking it. Over the next few days I felt very weak and had extreme anxiety in the wave and window pattern. I told my doctor about this and she put me on Z-pack instead. Then same thing happened. I had extreme anxiety that was not a normal human emotion. It was drug induced but again I thought it was the antibiotic. After 4 pills, I decided to wait and see if the strep throat would clear on its own. It did but the anxiety continued to come in the wave and window pattern but I could still function somewhat.

 

1 month later my glands were getting swollen. I had thought that the infection from the strep was still around so my doctor put me on a third antibiotic. I forget the name but it was not a cipro class one. Again, the anxiety worsened and I could not take it anymore. After a week, I finished the antibiotic and told my doctor something wasn't right. The anxiety was so intense. She put me on a low dose of Effexor for 5 days. All my windows closed and I when I was at work I got a panic attack. The anxiety was so bad that I admitted myself to the pysch ward for the first time in my life. There they put me back on the Lexapro at 5mg, hydroxyzine and 1mg of Ativan. When I got home I kept thinking I was having a heart attack on these drugs because of the side effects and drug interactions but my doctor told me to keep taking the Lexapro for at least a month. I stopped the Ativan cold turkey after 2 weeks and also stopped the hydroxyzine. After a month, my anxiety was so bad and I was really struggling. 

 

I went online and found out it was the drugs doing this so I stopped the Lexapro 5mg cold turkey. I became bedbound. SEVERE anxiety, dizziness, ear ringing, flu symptoms, no appetite, sound senstivity, vision problems and so much more I can't list. I tried explaining what was happening to me to both my family and the doctors but nobody believed I was in withdrawal from such a short term use. I suffered horrendously and became suicidal. My family forced me to take another drug. Mirtazapine 15mg. I took it for 6 days and said that it was making too angry so I stopped. I continued to get worse. I only had a few windows where I felt myself. I could not do anything. I could not watch TV or even brush my hair. I was pretty much dying of starvation. I had dozens of ER visits and finally after 2 months, my family forced me into the pysch ward where the doctors put me back on Mirtazpine 7.5mg, and then 15mg after a week. They also put me on Zyprexa 2.5mg. The sedative effect helped enough to get me out of there and I could eat again. But once home and once the sedative effects wore off, I got worse. I developed anger and paranoia and psychotic like feelings. I was more suicidal than ever. And for the next 3 months my family kept sending me back into the psych ward where brands were changed and they upped my Mirtazapine to 30mg and Zyprexa to 5mg then back down to 2.5mg. I was dead. I was like a deer in headlights and suffering the worst mental torment one can't ever imagine. I had to lie to get out of the pysch ward and when I tried to kill myself again, the police handcuffed me and put me back in the pysch ward. This was about 3 months after they put me on the Mirt and Zyprexa. They cold turkeyed me off the Zyprexa 2.5mg and lowered the Mirtazapine to 15mg. And they gave me 1 Prozac pill and 3 Trazadone pills plus I was put on hydroxyzine many times too. I even tried pain killers for relief. Everything kept making me worse and worse. And of course I had a bladder infection so they put me on antibiotcs again. And I was even put on sterioids! So many drugs! All in an 8 month time period. So here I am on 13.5mg of Mirtazapine. It's been almost 6 months now and I haven't made any changes other than going from 15mg to 13.5mg. I have no windows. My symptoms are horrendous. 

1. Severe anxiety

2. Terror/horror

3. Paranoia

4. Heavy cying spells

5. Burning brain/head pressure

6. Psychotic feelings

7. Anger

8. Suicidal thoughts and urges

9. Minor muscle twitches

And more I am sure. But those are the most severe. I feel disabled and like a person with a severe TBI. 

I am holding on the 13.5mg of Mirtazapine for now. My sister helps me with making the the liquid. I am bedbound and suffering probably more than most people going through this. I lay on the floor and scream and cry for HOURS. And this all happened just from an undiagnosed Lexapro withdrawal after just 2 months.

 

I would just like to know if even severely kindled people can heal and I would like an opinion about my taper. Please and thank you.

 

-Gemma

 

Drug history:

Prozac (as a child) 

Right Thyroid Removed August 2017
Lexapro (10-20 mg) May 2018 - July 2018 (CT after 2 months)


Penicillin July 2018 (3 pills)


Z-pac July 2018(A few pills)

 

Third antibitoc 2018 (1 week)


Effexor July 2018 (5days)


Lexapro (5 mg) September 2018 (1 month CT)


Lorazepam (1mg-0.5 mg) September 2018 (2 weeks)


Mirtazapine (15 mg) end of October 2018 (6 days)


Mirtazapine (7.5-30mg) November 2018 (FT and currently at 13.5mg)

 

Zyprexa (2.5mg-5mg) November 2018. (CT after 3 months) 

Edited by Gemma92
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Sassenach

Hello Gemma

Welcome to surviving antidepressants.

I am very sorry to hear that you are having such a tough time.

So many drug changes in a short space of time are going to cause problems for your central nervous system.

I realise you are feeling really bad at the moment but please do not change any medications at the moment.

As you have had several visits to the psychiatric ward, we need to know how old you are.

 

Sassenach

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Gemma92
39 minutes ago, Sassenach said:

Hello Gemma

Welcome to surviving antidepressants.

I am very sorry to hear that you are having such a tough time.

So many drug changes in a short space of time are going to cause problems for your central nervous system.

I realise you are feeling really bad at the moment but please do not change any medications at the moment.

As you have had several visits to the psychiatric ward, we need to know how old you are.

 

Sassenach

Thanks! I can't believe I left that detail out! I am 27 years old. 

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Altostrata

I'm so sorry you're going through this, Gemma. 

 

Does the mirtazapine help you sleep? Do any of your doctors acknowledge you might be suffering adverse effects from drugs?

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Gemma92
10 minutes ago, Altostrata said:

I'm so sorry you're going through this, Gemma. 

 

Does the mirtazapine help you sleep? Do any of your doctors acknowledge you might be suffering adverse effects from drugs?

Yes, surprisingly throughout this whole mess I am able to sleep a good 8-10 hours. The Mirtazapine helps with it. Sometimes I wake up in the middle of the night though. 

 

Not one Psychiatrist or neurologist believes any of this withdrawal stuff or so they say. The only ones who believe me are the Homeopathic doctors, Chiropractors and accupunturists. 

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Dejavu

Gemma, hello and welcome from me as well. You've got the best of the best helping you here. Your swift responses to all the information requested by the mods is greatly appreciated. It will help us to help you.

 

Just want you to know that I inadvertently kindled myself by going on and off sertraline a couple of times in the span of a few months. Then when withdrawal hit, I reinstated at too high a dose. Then I adjusted that dose up and down a few times to try and "fix" myself. I ended up a brain-fried mess with many of the same symptoms you now suffer. But by staying steady on one dose for several months, I have improved dramatically. I still have a way to go, and some days are not terribly pleasant, but the terror/depression/anxiety has abated and many other symptoms have lessened. So, yes, kindled people do heal. It will take some time and patience, but it is doable. Keep your chin up and listen to the experienced and knowledgeable voices here. You'll get through.

 

Sending you healing energy tonight!

 

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Gemma92
2 minutes ago, Dejavu said:

Gemma, hello and welcome from me as well. You've got the best of the best helping you here. Your swift responses to all the information requested by the mods is greatly appreciated. It will help us to help you.

 

Just want you to know that I inadvertently kindled myself by going on and off sertraline a couple of times in the span of a few months. Then when withdrawal hit, I reinstated at too high a dose. Then I adjusted that dose up and down a few times to try and "fix" myself. I ended up a brain-fried mess with many of the same symptoms you now suffer. But by staying steady on one dose for several months, I have improved dramatically. I still have a way to go, and some days are not terribly pleasant, but the terror/depression/anxiety has abated and many other symptoms have lessened. So, yes, kindled people do heal. It will take some time and patience, but it is doable. Keep your chin up and listen to the experienced and knowledgeable voices here. You'll get through.

 

Sending you healing energy tonight!

 

Thank you so much for the hope and thank you for taking the time and sharing your story with me! I am so happy that you are doing much better! I will definitely hold on my 13.5mg of Mirtazapine for now. I am sure the Zyprexa CT is going to take some time to settle down for me... as well as all the other drug changes. I won't let this beast beat me! 

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Glosmom

Hi Gemma,

Wow...what a story you have there.  I am so sorry for your suffering but the fact that you are able to type well, express rational thought and recount your past timeline of events is a testament that there is a lot of good going on in your brain.   Not nearly the same but some similarities occur in my daughter's story.  She is now 23 and she is recovering from the onslaught of iatrogenic medication events.   She had many of the symptoms you listed above (she has tapered off risperidone another antipsychotic) and is improving over time. If you are so inclined there are others on this website that are healing or have healed from being on antipsychotics (even after a short time of use).  So be patient with yourself and stay strong. You will get better!!  Sending many good thoughts your way. Glosmom

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Gemma92
8 hours ago, Glosmom said:

Hi Gemma,

Wow...what a story you have there.  I am so sorry for your suffering but the fact that you are able to type well, express rational thought and recount your past timeline of events is a testament that there is a lot of good going on in your brain.   Not nearly the same but some similarities occur in my daughter's story.  She is now 23 and she is recovering from the onslaught of iatrogenic medication events.   She had many of the symptoms you listed above (she has tapered off risperidone another antipsychotic) and is improving over time. If you are so inclined there are others on this website that are healing or have healed from being on antipsychotics (even after a short time of use).  So be patient with yourself and stay strong. You will get better!!  Sending many good thoughts your way. Glosmom

Thank you. I am glad your daughter is improving! She is very lucky to have you because not many people have someone to help them through this. Nobody believed me when this first happened. But now I have my sister who is helping me through it. Without her, I'd be dead. I'll try to stay strong and fight through this and will be patient while waiting for that first window to open up! 

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Gemma92

Can Zyprexa or Mirtazapine permanently slow down the metabolism? Or can this heal within time too? I gained 40Ibs on the two drugs combined. I was very skinny and needed to gain weight but now I am 15Ibs over my normal weight. When I evetually taper off the Mirtazapine, will it be easier to lose weight? I know this should be one of my least concerns at the moment but I still worry. 

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Dejavu

These drugs, especially mirtazepine, are notorious for causing weight gain. Once off the drugs, although it can be stubborn, generally the excess weight comes off. Of course, it will require effort and discipline on your part, as it would with any weight loss endeavor.

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ShiningLight

Welcome home! You have endured some real horrors. You are obviously very resilient! So glad you have the support of your sister and now this community. Hang in there--it gets better.

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Gemma92
3 hours ago, ShiningLight said:

Welcome home! You have endured some real horrors. You are obviously very resilient! So glad you have the support of your sister and now this community. Hang in there--it gets better.

Thank you, I am very glad to be here! I really do hope it gets better! 

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Gemma92

Current symptoms:

-Anhedonia 

-Terror/fear

-Paranoia

-Brain feels like it's on fire

-Head pressure 

-Intrusive thoughts

 

I tried to force myself to watch Youtube but I can't connect with anything I watch. It's like I am a Zombie with no joy or happiness. 

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