☼ Reagan: 19 - first time manic - need advice - diagnosis Bipolar 1 - having doubts

[Reagan]

This is Reagan's mom. Reagan is manic right now and can't post. We're in the process of going to our 3rd facility tomorrow so are trying to be better advocates for her success.  Reagan is a sophomore in college and a server at a restaurant. She has always been high functioning (was the drum major at her HS and on the dean's list in college) with no history of anxiety, depression or drug use. In 2020, she said she would take 1/4th of an edible with her roommates about 1x a month when they were partying, then when she and her boyfriend broke up in December, that changed to 1x a week.  She would sometimes drink with her roommates but was very busy and did not have a lot of time to party.  Only 1x did she consume "most" of a bottle of wine in one setting. We did a drug test and are a close family and I'm pretty sure this is all accurate. 

 

In January, she went to her OBGYN who prescribed her Lexipro (5mg) for anxiety. Reagan said it made her feel depressed so her school psychiatrist prescribed her 50 mg of Zoloft in Feb. and told her to discontinue the lexipro. When Reagan started the Zoloft, she immediately could not sleep and did not sleep for 7 days. We admitted her to an ER Feb. 15th (due to a snowstorm everything else was closed.) She was demonstrating racing thoughts and not making sense. 

 

The first hospital held her for 16 days (Green Oaks - Medical City - Dallas) . She was only released because we were not seeing improvement and wanted to take her for a gene test and to a neurologist. Her diagnosis was bipolar 1.

 

The first hospital prescribed her: 

150 MG Trazadone (bedtime as needed)

20 MG Propranolol 2x a day, as needed for heart

80 MG Latuda 1x day/dinner

300 MG Lithium 3x/day

 

Once home, we quickly realized she was not near ready to come home so we admitted her into a facility closer to home. We went to Mesa Springs in Fort Worth, TX. 

 

Lorazepam - 1 MG 3x day
Quetiapine - 50 MG 2x day
Quetiapine - 300 mg - bedtime
Divalproex 250 mg - 1 - morning and 500 mg/night
Mirtazapine 15 MG/bedtime

 

She was released after 10 days to start outpatient care. The first couple days she did ok but has been deteriorating and having racing thoughts again. She doesn't make sense. The LIFT driver that took her home from outpatient today dropped her off away from the house because Reagan didn't want them to know our address. She's obsessed with brushing her teeth (20x a day) and drinking filtered water (she talks about her water consistently.) She is making a lot of lists and post it notes and worrying about everyone in the world all the time. 

 

Outpatient called today and recommended other places because she requires more care than they can provide. 

 

We also saw a neurologist today who was concerned and ordered an MRI and something where she doesn't sleep for 14 hours and they monitor her brain activity. 

 

I'm at a point where I'm not convinced this is bipolar at all and am tempted to stop the meds cold turkey.  We see another psychiatrist on Thursday and are going to order the genetic test to see if that helps.  

 

Her brain is not making sense of things. She will have a thought and then try to connect it to sentences. Sometimes she thinks she is a doctor or a nurse. Then sometimes she is completely fine.  Any advice you have is appreciated.  

 

 

 

 

[Altostrata]

Welcome, mother of @Reagan

 

On 3/30/2021 at 12:07 AM, Reagan said:

Reagan said it made her feel depressed so her school psychiatrist prescribed her 50 mg of Zoloft in Feb. and told her to discontinue the lexipro. When Reagan started the Zoloft, she immediately could not sleep and did not sleep for 7 days. We admitted her to an ER Feb. 15th (due to a snowstorm everything else was closed.) She was demonstrating racing thoughts and not making sense. 

 

We're not doctors here, but it's fairly well known that antidepressants often cause sleeplessness and can make some people hypomanic or manic. Young people are particularly at risk. It is highly likely that all these experts have misidentified and mismedicated your daughter. 

 

Please do not stop the drugs cold turkey. If they're taken longer than a month, risk of withdrawal increases. 

 

Quote

Lorazepam - 1 MG 3x day
Quetiapine - 50 MG 2x day
Quetiapine - 300 mg - bedtime
Divalproex 250 mg - 1 - morning and 500 mg/night
Mirtazapine 15 MG/bedtime

 

She's not sleeping? What is her daily drug schedule?

 

If I were you, I'd have a good talk with the entire psychiatry department and find a doctor who is up-to-date on adverse effects of antidepressants in youth.

 

See 

 

Amitai, M., Chen, A., Weizman, A. et al. SSRI-Induced Activation Syndrome in Children and Adolescents—What Is Next?. Curr Treat Options Psych 2, 28–37 (2015). https://doi.org/10.1007/s40501-015-0034-9 https://link.springer.com/article/10.1007/s40501-015-0034-9

 

Offidani E, Fava G, A, Tomba E, Baldessarini R, J: Excessive Mood Elevation and Behavioral Activation with Antidepressant Treatment of Juvenile Depressive and Anxiety Disorders: A Systematic Review. Psychother Psychosom 2013;82:132-141. doi: 10.1159/000345316 https://www.karger.com/article/FullText/345316#

 

Aggarwal, A., Sharma, D. D., Sharma, R. C., & Kumar, R. (2011). Hypomania as a genuine side effect of fluoxetine. The Journal of Neuropsychiatry and Clinical Neurosciences, 23(3), E23-24. https://doi.org/10.1176/jnp.23.3.jnpe23

 

Preda, A., MacLean, R. W., Mazure, C. M., & Bowers, M. B. (2001). Antidepressant-associated mania and psychosis resulting in psychiatric admissions. The Journal of Clinical Psychiatry, 62(1), 30–33. https://doi.org/10.4088/jcp.v62n0107

 

https://www.psychiatryadvisor.com/home/depression-advisor/antidepressant-associated-hypomania-navigating-clinical-challenges/

 

https://www.psychiatrictimes.com/view/when-children-get-worse-antidepressants-activation-or-bipolar

[Reagan]

We finally stopped the behavior program at Mesa Springs and decided to work directly w/a psychiatrist. He believes she was misdiagnosed and on 4-1 he reduced her medications by 1/2.  She is showing signs of improvement; although know it may take weeks to taper her off the medicines completely. 

[Altostrata]

Good to hear she is doing better on less drug. While a first cut of 50% in dosage might be fine, given potential over-saturation of each dosage, strongly recommend much smaller reductions from here. She may be physiologically dependent on any drug taken more than a month. 

 

In particular, I would taper lorazepam last, and no faster than 10% exponential per month (10% dosage calculated on the last dose -- decreases keep getting smaller), to avoid the risk of benzodiazepine withdrawal syndrome. The lorazepam may help her cope with symptoms of withdrawal from the other drugs, especially insomnia, which is a very common withdrawal symptom.

[Reagan]

@Altostrata Thank you so much for the feedback. 

[Reagan]

Topic title:  Current Behaviors and Symptoms - Is this a side effect of meds??

 

Reagan began tapering off her meds on 4-1 and is showing improvement. Here are some examples of her behaviors in the last week.  Do these sound normal for the meds she is currently on? 

 

April 1st, 2021^, – current - Lorazepam (Ativan)- 1 MG 3x day
April 1st, 2021^,, – current – Quetiapine (Seroquil) - 300 mg - bedtime
April 1st, 2021^,, – current - Divalproex (Depacote) 250 mg - 1 - morning and 500 mg/night

 

1.       Overall, she is making more sense (she used to be obsessed with drinking filtered water and/or even wearing a mask inside the house.) Those types of behaviors have stopped.

2.       She is working very, very hard to get organized at home but gets sidetracked, confused, etc. (misplacing things) or starting new piles all the time.

3.       She does not have a filter. May tell a random stranger about being in a mental hospital, etc.

4.       She seems to get agitated and makes less send after we’ve been out in public. I’m wondering if this is because she has to work harder to make sense. She talked to my mom on the phone for an hour and my mom said that she made perfect sense. Last Saturday, we went to her sister’s drumline competition and she became very agitated toward the end doing some things that didn’t make sense such as suddenly standing up in the middle of the performance to say she needed to get a snack.

5.       She seems worried about the world, her sisters, etc. We were getting our covid shots yesterday and while sitting for 15 minutes (she was next to a stranger) she asked the stranger, “Are you ok? Are you in danger?’

6.       She feels that people are talking about her when they are having random conversations in restaurants, etc. The other day while in her room she felt she heard a neighbor making a comment that she had covid (auditory hallucinations?)

7.       She is feeling more guilt and frustration with the events that happened the last couple months so that tells me that her mind is less clouded from the medications.

 

Thanks in advance for your feedback. 

Mom

 

Edited April 8, 2021 by ChessieCat
added topic title before merging into Intro topic

[ChessieCat]

I've merged the new topic you created with the Introduction topic which is the best place to ask questions about Reagan's situation and to journal her progress.  That way her history will all be in one place and you will not have to repeat her story.

 

Also, Altostrata is following the Introduction topic.  Posts made elsewhere might not be seen by her.

[Altostrata]

Reagan is still taking an amount of psychiatric drugs that might cause anyone to be confused and aimless.

 

If she is feeling guilty about getting into this predicament, you might remind her to forgive herself by saying "I forgive myself" every time one of these bad feelings comes up. She should not be tormented by something she couldn't help while she's trying to recover from drug-induced symptoms, they're bad enough on their own.

[Reagan]

Thanks to both of you for answering so quickly and helping me navigate through this more streamlined  

[Yesyes123]

Hello @Reagan

 

I'm 21 and went manic because of Lexapro last year.

It's been almost 7 months and I am extremely better.

 

Please be calm, and follow the advice of the people here as they really know what they are doing, they quite literally saved my life.

 

You should be reading "Anatomy of an Epidemic" by Robert Whitaker to understand this subject better.

 

 

[Reagan]

I've listened to the audio and watched the videos recommended. It makes me frustrated at myself for not knowing better or handling it better.  We were out of town when she became manic. We cut the vacation short and drove home in a snowstorm to go to an emergency meeting w/her psychiatrist to see what was happening (her reaction to zoloft.) But due to the storm the meeting was cancelled and my only option (I felt) was going to the ER. It was them who insisted she go to an outpatient facility where this mess of many, many drugs started.  What should I have done differently.  Ugh! This is so frustrating. I pray that she becomes her old self with time. 

[Yesyes123]

@Reagan

Your daughter will be fine in time.

 

That is the biggest agent here - time. If you are able to let this storm pass, time will heal.

 

Don't beat yourself over thinking about what you could have done differently. You did the best you could with the knowledge you had at the time.

 

Unfortunately the pharmaceutical companies have put profits over human rights, and that is ultimately what caused all of us to be in this situation and the primary reason why this website even exists and has so many members.

 

Your daughter is really young and if you do some research you will see young people seem to be the ones with the best chances and fastest recoveries. 

 

Again, please follow the advice you get from the moderators here. At first I was suspicious because so much of it differs from what my psychiatrist said, but after studying extensively I have found that the truth is right here and psychiatrists are severely misinformed, as insane as that sounds.

 

Peace and healing

[Reagan]

Thank you. ; ) 

[Reagan]

Friends....Reagan has been off Ativan for 4 days now. The psychiatrist increased her dose of Seroquil by 100 mg (he said the dose they gave her wasn't a dose to be effective) and is also weaning her off the Depacote. She is all over the place emotionally. She is worried about the world. She saw a random young man (15) while walking yesterday and asked him if he was all right and if he needed a ride somewhere. She will make sense sometimes and then the next minute say something that doesn't make sense. The good news is.....she hasn't felt like people are talking to her/about her (auditory hallucinations) for about a week so that seems like progress.  I guess I'm still looking for reassurance that this is normal for now and trying to see what else I can do to support her while she is going through this.  Thanks. 

[Yesyes123]

Doctors will many times say that a small dose isn't "enough to have an effect" and that is simply false (you can confirm this with the moderators here).

 

In fact, a dose of 12.5mg of Quetiapine (Seroquel), which is half a 25mg pill, will have an insanely strong sedative effect. 

 

We have to confirm this with the mods (I am not a moderator) but it doesn't seem like a good idea to increase the dosage of Seroquel right now.

 

I once took a 12.5mg dose of Seroquel when I was desperate before I found this website. 

 

It absolutely sedated me and I slept for 14 hours and woke up with my mouth and throat feeling absolutely dry for that entire day. I knew I couldn't keep taking that.

 

Peace and healing

[Rosetta]

(EDITED 2x)

 

@Reagan

Is this correct?  Regan took 3 mg a day of Lorazapam (Ativan) spaced out 1mg 3x a day for 4 weeks?  From March 4 to April 8th?
 

And the new psychiatrist told you to stop the Ativan cold turkey?  Did he say why?  I would defer to the Mods, of course, but I would think that you need a second opinion immediately.  That course of action will throw her system into benzo withdrawal.  Benzo withdrawal must be corrected within a very, very short period of time (less than two weeks) or the patient is running the risk of being ill for a very, very long time with protracted benzo withdrawal.
 

If the doctor said this action was to avoid dependency, it is all ready too late.  In that case, you need a new doctor.  If it was something else, like an adverse reaction, I would still get a second opinion immediately.  
 

This is very serious.  Benzo dependency is very, very well known and has been for many years.  Cold turkey off of benzos can cause a syndrome that can last for years.  It’s also dangerous in the short term.  People can die from that alone.
 

Once a person is in “protracted” benzo withdrawal, there is very little that can be done except giving the person time and babysitting her through it.  It can take years.  At the bottom of this reply is a link for the Benzodiazapine Information Coalition’s list of doctors who will help with a slow taper.  Please look for a doctor in your state.

 

What does it mean that she was taking propranol for her “heart?” Do you know?

 

When did you stop mirtazapine?

 

https://www.benzoinfo.com/doctors/

 

Here is the story of a doctor who suffered through benzo withdrawal, but it was corrected quickly enough.  She is in Texas:

 

https://www.benzoinfo.com/christy-huff/

This is what your daughter should have been told when she was prescribed Ativan (although it was an emergency circumstance and I doubt she would have understood).  Please read this now to understand the danger.

 

https://www.benzoinfo.com/2018/10/16/informed-consent/

You might Print it out take this informed consent form to your daughter’s doctor and ask about it.  Maybe he will continue to prescribe Ativan but change a different drug that is sedating.  This is a short term fix.  You need a benzo withdrawal wise doctor, if you ask me.
 

My heart goes out to you,

Rosetta

 

 

[Yesyes123]

2 hours ago, Rosetta said:

You need a benzo withdrawal wise doctor

 

Hey, this is just my personal opinion and experience.

 

But scary as it is, I have never found a doctor who was knowledgeable in the slighest about these things.

 

(I have never taken benzos though - I talk about AD withdrawal)

 

It's counter intuitive, but following the advice of the moderators on this website instead of what any doctor I've seen says is what saved my life.

[Reagan]

Thank you. I've reached out to the dr and will get this worked out. I appreciate you all so much. 

[Rosetta]

@Yesyes123  It’s sadly true what you say about the lack of knowledgable doctors.  I would, definitely, ask SA’s Mods before taking action on a doctor’s advice, but having a doctor who is willing to prescribe the benzo long enough for a slow taper is absolutely crucial.

[Reagan]

Thanks everyone. I called the psychiatrist and we've instead cut it in half.  Jen

[Reagan]

Friends - I'm struggling trying to compare Reagan's symptoms with others. She just came downstairs with a hamburger toy on her head and she was completely serious Her MRI is tomorrow. I went to YouTube to try to see how other people act during withdrawal and I can't find anything. We did put her back on the Ativan after the support group here gave me feedback so thank you for looking out for us. This has been really stressful but I'm grateful for each of you. 

 

[Rosetta]

Sigh.  In general, a reduction of no more than 10 percent per month is safe for benzos (or for any of these drugs.)  For some people, that’s too much.  For a person who is as destabilized as your daughter, I would not want to try to reduce a benzo at all, right now, if the circumstances were ideal and she were not on any other sedatives.
 

However, the doctor may be worried because of the number of drugs she is on that have a sedative effect.  Is this the same doctor who put her on the 3 mg of benzo with all those other drugs?  Did he give you a reason for his decisions regarding the benzo CT or the 50 % cut?

 

Quetiapine is sedating. Divalproex can be sedating.  Benzos are sedating.   Maybe the doctor is having second thoughts.  The lesser evil sort of thing.    
 

Nonetheless, I would want a second opinion — or third as it appears it would be.  I have a very, very bad feeling about this.
 

It’s possible there is no “good” decision here, but I do hope you reach out right away to one of the doctors recommended on the BIC site that I posted.  There may be other groups that could help you find a doctor if BIC can’t.  Time is not on your side.  Benzo reinstatements must be done within 2 weeks, but the sooner they are done the less damage, in general.  She has just gone 4-5 days without the drug.

 

Being in the hands of someone who has made it a speciality or is well versed in the effects of benzos and benzo withdrawal would make me much more comfortable were she my daughter.  They do exist.  The benzodiazepine epidemic has been in the news.

 

I am trying to make this clear for the Mods (please correct any mistakes I may make in a post of your own): The doctor had told you to stop the quetiapine from 100 mg a day (in two 50 mg doses) to zero on April 1st, correct?  (at the same time as CTing the 15 mg of mirtazapine).  Then, he increased the quetiapine from zero to 300 mg in one dose at bedtime (at some point after April 1st?). On April 8th, he told you to CT the 3 mg of benzo.  It seems as if he is giving an antipsychotic (Q) in place of a benzo, that has been in her system for 4 weeks, as a sedating drug.  Then, when you asked about the benzo CT, he changed his mind and said to give her 1.5 mg spaced out over three doses, a 50% reduction, and increased the quetiapine from 300 mg to 400 mg at bedtime.

 

Regan’s mom, I’m extremely worried.  I’m not a doctor; I would never tell you what to give your daughter, but I feel very, very strongly that you need to get another opinion.  Why?

 

I CT’d a benzo, Xanax, over 4 years ago.  I am still struggling.  I have not progessed in my recovery of health the way people who only CT’d the ADs have.  I was suicidal for over three years.  Only in the past 2 years have I been functional.  I always thought I had been very careful with the benzo until I found out that my understanding of the way the body processes Xanax was all wrong.  My extreme symptoms, including suicidal akathisia, made much more sense after I came to that realization.  I would not be here if I had not had a little 6 year old girl who needed her mother when I was at the worst point in withdrawal.
 

As to the increase in Q and vast decrease in benzo, I’m not inclined to think that the doctor’s decision is solely about sedation effects.  It seems as if he is treating your daughter as having a manic disorder instead of recognizing that she has suffered an adverse reaction to a drug.  He may be treating the side effect of mania as if it were natural mania instead of an adverse reaction.  So many doctors do that, and they severely injure their patients in doing so.
 

In short, a reduction of 50 percent of a benzo is going to be a problem.  That concession for 50% instead of CT is not likely to prevent benzo withdrawal.  
 

I hope you can find a doctor who is aware of the dangers of benzo WD.

 

Rosetta

[Yesyes123]

@Reagan 

Please believe what @Rosetta is saying. You don't need to let despair take over, you just need to know the truth and focus on the proper actions now.

 

You and your daughter will make it out of this eventually.

 

Peace and healing

[ChessieCat]

Hi Reagan's mum,

 

I can image how difficult this all is for you.  But I wanted to let you know that we have had another mum whose daughter was in a similar situation to yours and that her daughter recovered.  However, as part of the healing process, once the daughter recovered she requested that all the posts made by her and her mother be removed so I am not able to provide any evidence of this.

 

One of our moderators has recovered from many years of poly drugging as has another member:

 

Shep - Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

GiaK - withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug

[ChessieCat]

And here is another recovery (click on the little arrow top right of quote box to go to her Introduction topic):

 

  

On 11/2/2020 at 2:29 AM, Tiggy said:

Dear Survivors

Four years later I seem to have recovered from my late-onset "bipolar" episode and finally got off all the drugs 2 months ago. I am so grateful to all of you for your advice and support, without which I would have remained in a terrifying, expensive limbo forever. My partner Dr Mussy found your site, read everything he could lay his hands on, and with your help guided me through this so that I knew what to do. 
My life has changed dramatically... Dr Mussy and I moved to a tiny country town here in South Africa where there is clean air and water, and barely any traffic. Here I was able to slowly come out of my seizure of fear. I have been going for bike rides in the country, growing vegetables, and finding life slowly growing on me again bit by bit. I am so grateful to you for giving me this time to be "back" and find joy. 

Yours, Tiggy

 

[Reagan]

Here are some of Reagan's current symptoms.  

1. Confusion. She wanted to leave a "thank you" note for one of her best friends. We drove over there and she went to the wrong house. She also was confused while we were driving home telling me that I was on the wrong road (I was on the toll road instead of the slower expressway.) 

2. Highly emotional. We're having a lot of crying right now. She misses her friends and it's difficult for her to not blame herself for something that was completely out of her control. 

3. Irritable - she gets very sassy. Not violent but definitely mean. When I told her she was not ready to drive yesterday it upset her very much. 

4. She is almost kid-like. She came down the stairs yesterday with her socks pulled 1/2 way up her legs. The day before she was wearing a hamburger prop (that I use for teaching) on her head when she came down the stairs. 

5. She's best when she wakes up and as she gets tired it seems like these symptoms happen more frequently. 

 

The good news...

1. She is eating healthy. 

2. She loves to exercise.

3. She is sleeping at night. THANK GOD. : O) 

 

Thanks, 
Jen

[Altostrata]

Hi, Jen. How is @Reagan doing now?

 

Have you asked her why she's doing these funny things?

[Reagan]

Those were part of her medications. Most of those behaviors have stopped. She is almost completely tapered off and will be 100% in a couple days. Right now the only visible symptom is shaking some and being irritable. 

[Reagan]

Hi Everyone. This will be my last post. Reagan completely stopped her medications a few weeks ago and is doing fine. I believe that she was prescribed too large a dose of Zoloft which that, combined with Zoloft was on her genetic test as not being a match for her, sent her into medical toxicity.  The hospital, instead of helping her to get sleep, misdiagnosed her as bipolar and put her on several medications that causes severe symptoms. Then, the next hospital prescribed 4 different medications to treat symptoms from the previous hospitals unnecessary medications.  The whole thing sickens me but I'm grateful for this group and for you guidance and patience.  

 

Good luck to all of you. This is a hard thing to go through. Jen

[Altostrata]

Thank you, Jen for @Reagan

 

Good to hear Reagan is doing so much better. Please do consider writing up a Success Story when she's clearly out of the woods, these are very important to the community. Someone else whose child has been misdiagnosed and drugged may see it and be encouraged.

[Reagan]

Success Story - Reagan- 19 - Misdiagnosed Bipolar

 

Team - I'm posting our success story as Reagan has been back to normal for 5 months.  All the details are below, but our 19-yr-old daughter went to her school psychiatrist to reduce "covid stress" and had a bad reaction to it (Zoloft.) After not sleeping for about a week, and this was during that snow storm in TX when everything was shut down, our only option was to take her to a hospital because her psychiatrist could not be reached after many attempts. 

 

The hospital recommended a behavior facility when I told them I felt like all she needed was sleep.  I wish I would have followed my intuition but was out of my knowledge base and went w/the dr's recommendation.  It went all downhill from there. 

 

Our family has no history of bipolar or anything disorder related. That was one thing that kept showing up. Once she got to the behavior hospital and they put her on so many medications her symptoms completely changed. That was another red flag.  I really was shocked when Mesa Springs said they didn't have enough support for the symptoms their medications created in their outpatient program and recommended us moving her. 

 

We finally went w/our gut and gave up on the behavior facilities that in my opinion did NOTHING took her to a private psychiatrist.  As soon as all the meds were out of her system she was completely back to normal. 

 

She went w/a traveling performance band all summer (one of her dreams) and is working again (while enrolled in UTA.

 

This group saved my sanity and I want to thank every person that took the time to read my posts and/or offered guidance and support

 

Please reach out to me if you have any questions. 

 

Jen

 

***********************************

Our daughter went on Lexipro in Jan 2020 (5mg.) She said it made her feel depressed so went to her school (UTA) psychiatrist who put her on 50g of Zoloft early February.  

 

When Reagan started the Zoloft, she immediately could not sleep and did not sleep for 7 days. We admitted her to an ER Feb. 15th (due to a snowstorm everything else was closed.) She was demonstrating racing thoughts and not making sense. 

 

The first hospital held her for 16 days (Green Oaks - Medical City - Dallas) . She was only released because we were not seeing improvement and wanted to take her for a gene test and to a neurologist (which the hospital did not provide.) Her diagnosis was bipolar 1.

 

The first hospital prescribed her: 

 

February 17, 2021-   March 4, 2021  - 150 MG Trazadone (bedtime as needed)

February 17, 2021-   March 4, 2021  - 20 MG Propranolol 2x a day, as needed for heart

February 17, 2021-   March 4, 2021  - 80 MG Latuda 1x day/dinner

February 17, 2021-   March 4, 2021  - 300 MG Lithium 3x/day

 

2nd Hospital

 

Once home, we quickly realized she was not near ready to come home so we admitted her into a facility closer to home. We went to Mesa Springs in Fort Worth, TX. 

 

March 4– April 1st  - Lorazepam - 1 MG 3x day

March 4– April 1st  - Quetiapine - 50 MG 2x day

March 4– April 1st  - Quetiapine - 300 mg - bedtime

March 4– April 1st  - Divalproex 250 mg - 1 - morning and 500 mg/night

March 4– April 1st  - Mirtazapine 15 MG/bedtime

 

She was released after 10 days to start outpatient care. The first couple days she did ok but has been deteriorating and having racing thoughts again. She doesn't make sense. The LIFT driver that took her home from outpatient today dropped her off away from the house because Reagan didn't want them to know our address. She's obsessed with brushing her teeth (20x a day) and drinking filtered water (she talks about her water consistently.) She is making a lot of lists and post it notes and worrying about everyone in the world all the time. 

 

Outpatient called today and recommended other places because she requires more care than they can provide. 

We also saw a neurologist today who was concerned and ordered an MRI and something where she doesn't sleep for 14 hours and they monitor her brain activity. 

 

I'm at a point where I'm not convinced this is bipolar at all and am tempted to stop the meds cold turkey.  We see another psychiatrist on Thursday and are going to order the genetic test to see if that helps.  

 

Her brain is not making sense of things. She will have a thought and then try to connect it to sentences. Sometimes she thinks she is a doctor or a nurse. Then sometimes she is completely fine.  Any advice you have is appreciated.  

 

April 1st Update

 

We finally stopped the behavior program at Mesa Springs and decided to work directly w/a psychiatrist. He believes she was misdiagnosed and on 4-1 he reduced her medications by 1/2.  She is showing signs of improvement; although know it may take weeks to taper her off the medicines completely.  Her gene test confirmed she is not compatible w/Zoloft which is likely what started all this.

 

 

Tapering Off Updates- April 1

 

Reagan began tapering off her meds on 4-1 and is showing improvement. Here are some examples of her behaviors in the last week.  

 

April 1st, 2021, – current - Lorazepam (Ativan)- 1 MG 3x day

April 1st, 2021,, – current – Quetiapine (Seroquil) - 300 mg - bedtime

April 1st, 2021,, – current - Divalproex (Depacote) 250 mg - 1 - morning and 500 mg/night

 

1.       Overall, she is making more sense (she used to be obsessed with drinking filtered water and/or even wearing a mask inside the house.) Those types of behaviors have stopped.

2.       She is working very, very hard to get organized at home but gets sidetracked, confused, etc. (misplacing things) or starting new piles all the time.

3.       She does not have a filter. May tell a random stranger about being in a mental hospital, etc.

4.       She seems to get agitated and makes less send after we’ve been out in public. I’m wondering if this is because she has to work harder to make sense. She talked to my mom on the phone for an hour and my mom said that she made perfect sense. Last Saturday, we went to her sister’s drumline competition and she became very agitated toward the end doing some things that didn’t make sense such as suddenly standing up in the middle of the performance to say she needed to get a snack.

5.       She seems worried about the world, her sisters, etc. We were getting our covid shots yesterday and while sitting for 15 minutes (she was next to a stranger) she asked the stranger, “Are you ok? Are you in danger?’

6.       She feels that people are talking about her when they are having random conversations in restaurants, etc. The other day while in her room she felt she heard a neighbor making a comment that she had covid (auditory hallucinations?)

7.       She is feeling more guilt and frustration with the events that happened the last couple months so that tells me that her mind is less clouded from the medications.

 

 

April 11th

 

Friends....Reagan has been off Ativan for 4 days now. The psychiatrist increased her dose of Seroquil by 100 mg (he said the dose they gave her wasn't a dose to be effective) and is also weaning her off the Depacote. She is all over the place emotionally. She is worried about the world. She saw a random young man (15) while walking yesterday and asked him if he was all right and if he needed a ride somewhere. She will make sense sometimes and then the next minute say something that doesn't make sense. The good news is.....she hasn't felt like people are talking to her/about her (auditory hallucinations) for about a week so that seems like progress. 

 

 

April 13 

 

Friends - I'm struggling trying to compare Reagan's symptoms with others. She just came downstairs with a hamburger toy on her head and she was completely serious Her MRI is tomorrow. I went to YouTube to try to see how other people act during withdrawal and I can't find anything. We did put her back on the Ativan after the support group here gave me feedback so thank you for looking out for us. This has been really stressful but I'm grateful for each of you. 

 

 

 April 14 

 

Here are some of Reagan's current symptoms.  

 

1. Confusion. She wanted to leave a "thank you" note for one of her best friends. We drove over there and she went to the wrong house. She also was confused while we were driving home telling me that I was on the wrong road (I was on the toll road instead of the slower expressway.) 

2. Highly emotional. We're having a lot of crying right now. She misses her friends and it's difficult for her to not blame herself for something that was completely out of her control. 

3. Irritable - she gets very sassy. Not violent but definitely mean. When I told her she was not ready to drive yesterday it upset her very much. 

4. She is almost kid-like. She came down the stairs yesterday with her socks pulled 1/2 way up her legs. The day before she was wearing a hamburger prop (that I use for teaching) on her head when she came down the stairs. 

5. She's best when she wakes up and as she gets tired it seems like these symptoms happen more frequently. 

 

The good news...

1. She is eating healthy. 

2. She loves to exercise.

3. She is sleeping at night. THANK GOD. : O) 

 

 

 

May 3  (Medical Tapering HIstory)

 

 

February 17, 2021-   March 4, 2021 - 150 MG Trazadone (bedtime as needed)

February 17, 2021  - March 4, 202 - 120 MG Propranolol 2x a day, as needed for heart

February 17, 2021  - March 4, 2021 - 80 MG Latuda 1x day/dinner

February 17, 2021  - March 4, 2021 - 300 MG Lithium 3x/day

 

NEW HOSPITAL

March 4– April 1st - Lorazepam - 1 MG 3x day, April 12th, 2021 – current - Lorazepam (Ativan)- .5 MG 3x day

March 4– April 1st  - Quetiapine - 300 mg - bedtime, April 12th, 2021 – current

March 4– April 1st - Divalproex 250 mg - 1 - morning and 500 mg/night, April 12th, 2021 – current - decreased to 500 mg bedtime

March 4– April 1st  - Mirtazapine 15 MG/bedtime STOPPED April 8th

March 4– April 1st - Quetiapine - 50 MG 2x day, STOPPED April 8th

 

 May 17 

 

Hi Everyone. This will be my last post. Reagan completely stopped her medications a few weeks ago and is doing fine. I believe that she was prescribed too large a dose of Zoloft which that, combined with Zoloft was on her genetic test as not being a match for her, sent her into medical toxicity.  The hospital, instead of helping her to get sleep, misdiagnosed her as bipolar and put her on several medications that causes severe symptoms. Then, the next hospital prescribed 4 different medications to treat symptoms from the previous hospitals unnecessary medications.  The whole thing sickens me but I'm grateful for this group and for you guidance and patience.  

 

Good luck to all of you. This is a hard thing to go through. Jen

 

 

Edited October 8, 2021 by ChessieCat
added topic title before merging with intro topic

[ChessieCat]

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

[Reagan]

@CheshireCat darn. I thought I just did add it as a success story. Can you adjust it for me or should I repost? 

[lithiumnomore]

Thank you for sharing this. I had a manic episode due to Zoloft at 18 but unfortunately accepted the bipolar diagnosis and spent the next 20 years trying to figure out the "right combo" of meds when it turns out the meds were causing the symptoms. It's wonderful that you were able to identify the cause of her issues and get her off meds. You saved her life.

[Reagan]

Thanks so much for your feedback. I'm so sorry you had to go through that. It's hard not to be resentful to the medical community and her school.  It was a perfect storm of bad weather and an overcrowded ER that I think led them to make assumptions and push her out the door to a behavior facility.  I guess if I learned anything it is that life just isn't fair all the time and even though it completely sucked...if I can share the experience and keep one person from making the mistakes I did - or give them confidence that the diagnosis could be incorrect - I would do it. Thanks again and godbless. 

 

Jen

[Ariel]

@Reagan

Hi Reagan and Reagan's mom, 

I am moved by your story. Thank you for sharing.

How is Reagan doing today? 

If you feel like stopping by to write an update it would be great to hear how Reagan is doing. 

I wish you and your family all the best,

A.