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Glosmom: my daughter's taper

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Glosmom

just want to thank everyone here who posts.  I am managing my daughter's withdrawal.  She doesn't speak much so i have to gauge her withdrawal by her eating and sleeping habits as well as when we 'see her old personality' show up for a few minutes a day.  When she can concentrate on a video or a movie, play Uno, or listen to her spotify.....we know she is feeling better.  THe tapering is so slow and i want her off this med, but watching her body is my only key.  It is an amazing process to see this sweet child who has no idea why this is happening, go through this process. Those of you who can speak and share are my light.  Peace 

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Gridley

Hello, Glosmom, and welcome to survivingantidepressants.com.

 

I have moved your post to the Introductions and Updates forum, where more people will see it.  This is your thread where you can ask question and give updates.

 

I am glad you're being careful and slow with your daughter's taper.  Please be aware that, as slow as you are going, it is a bit faster than SA's recommended tapering speed, which is no more than 10% per month with a four week holding period each month to allow the central nervous system to stabilize.  This approach is a harm-reduction method to minimize withdrawal symptoms.  Some people can taper faster and some have to to taper much slower.  This link explains the 10% per month taper:

 

Why taper by 10% of my dosage?

 

Here are some more links that might be helpful:

 

Dr Joseph Glenmullen's WD Symptoms Checklist

 

Non-drug techniques to cope with emotional symptoms

 

Windows and Waves Pattern of Stabilization

 

Brain Remodelling


Video:  Healing From Antidepressants - Patterns of Recovery

 

How do you talk to a doctor about tapering and withdrawal?


What should I expect from my doctor about withdrawal symptoms?

 

success-stories-recovery-from-withdrawal

 

These are the only two supplements which SA recommends:

 

Magnesium

Omega-3 Fish Oil

Edited by Gridley

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powerback

Hi glosmom ,your daughter is  lucky to have you fighting for her like this ,from someone that has been ripped apart by this process but getting stronger in my soul from the fight  ,good on you and total respect to you .

PB

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nz11

Glosmom how is your daughter going...any update.

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Glosmom

Hi NZ11,

Sorry i missed your post. I don't think i navgate this site very well. Glo is hanging in there. We have held her at 0.65 for almost 5 weeks now because she has been struggling with what we call 'terrors.'  She will have fits of rage and anger that show up for about 5 to 20 minutes at various points of the day.  Glo (before this all happened) was the sweetest girl in the world. never angry always loving....so this behavior is terrifying to watch. It comes and goes and is actually subsiding (less times during the day and shorter periods...now just happening a little before bed) the longer we hold her here. It is probably a result of us tapering too fast in the beginning so we are doing better about watching her symptoms.  The good news is at this lower dose we are seeing more of her sweet personality show up too. She talks about wanting to go on trips, go to camp, see grandma and she will play on her ipad and even do a little writing/coloring and puzzles.   So she is no where near who she was before all this happened but we are encouraged by the lower dose and seeing more of her 'show up' at times.  We are thinking about decreasing her a bit next week if she holds steady so fingers crossed.

 

Thanks for asking NZ and i hope all is well with you!

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Banana121

Hiya, Glosmom. I wanted to ask how you started the taper again when you realised that you were going to fast?

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Glosmom

Hi Banana121,

We see her sort of stabilize in her actions and functions throughout the day.  She lives half time with her dad and half time with me, so fortunately there are 2 of us watching her behavior, sleep schedule, appetite and moods.  We notice that her moods and/or behaviors are more similar from one day to the next (no wide swings of anger, sadness or apathy)  We notice her smiling more, being able to focus more on vidoes, her music, doing puzzles, etc.  So when we start to see consistency we know she is through that withdrawal phase (her worst days are usually over by day 10 after a drop and then she really starts to do well at week 3).  We then let her rest/hold a week or two more with that consistency and then we plan the day to do the next decrease.  So it is a bit of a different approach then someone who is able to verbalize how they feel but we see the pattern each time, so that gives us a bit of comfort.

 

Hope that helps!

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Banana121

Thanks a lot that really helps. Sorry I haven't replied sooner. I have been so busy with my brother and It's made me feel really down from just watching him go through withdrawal, the mood swings, anxiety and pacing. Unfortunately, he has stopped taking his medication while he was on holiday. So I wanted to ask how you reinstated your daughters medication and by how much from when you first tapered her off because I am struggling to know how to go about from here and I am scared of him getting an adverse reaction. I really relate to you, thanks.

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powerback
10 minutes ago, Banana121 said:

Thanks a lot that really helps. Sorry I haven't replied sooner. I have been so busy with my brother and It's made me feel really down from just watching him go through withdrawal, the mood swings, anxiety and pacing. Unfortunately, he has stopped taking his medication while he was on holiday. So I wanted to ask how you reinstated your daughters medication and by how much from when you first tapered her off because I am struggling to know how to go about from here and I am scared of him getting an adverse reaction. I really relate to you, thanks.

Sorry to interject here glossmom,hi Banana ,what you say here is very real ,you need to have a strategy to keep your stress levels down ,there is a real situation  that you can get   yourself into here and  its called compassion fatigue ,I have barely been around my family for months because when I'm bad its too hard on my mam ,shes learned to distinguish between withdrawl and the real me but its been very hard on her .

As I said before your a brilliant sibling but you need to find the line between help and caring and making yourself unwell .

 

I'm similar to you in the fact I've spent countless hours trying to save my brother from what I see coming he's way  because ive been there and done all the mistakes he carry's on doing but I'm stepping back slowly now .

Total respect to you .

Take care  

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Glosmom

Hi Banana121 and powerback,

Interject away! Fine with me....the more minds working on these issues the better :)  I agree with powerback...setting boundaries is very important.  I have a long history in growing and learning how to deal and cope with my daughter. She is mentally handicapped so it took years as a mother to learn to deal with wanting a 'normal' daughter and getting a 'special' one instead. Through that process i ultimately realized i needed to take care of myself first (see friends, visit family, exercise, eat right, enjoy life) if i was going to be able to take care of her.  Through the years she grew into a very sweet girl, l learned to just let her be and still be myself,  and we had a very simple but sweet life.  The set back that occurred with her 2 years ago was FAR WORSE for me to deal with....so that took a little longer for me to get back to the same conclusion....I needed to take care of myself first, in order to be around to take care of her.  I was very mad, sad and depressed in the beginning of her psychosis issue (becase a medicine wiped out my beautiful daughter); but ultimately, thanks to this site and other stories of people finding ways to get back to their 'normal' self or close to it, gave me peace that we just needed to take the time and let her body and mind lead the way.

 

So, my initial dream to 'get her off this med' failed miserably as most of us on here find out.  So after the cold turkey we did in January of 2017 ( i still hadnt found this site) we reinstated her all the way back up to her 1.5mg dose after three weeks of her not getting better.  I do wish i would have known that we could have tried a lower dose (so I am thinking .5 mg) and just held her there until she stabilized.  But we didn't and so be it, can't do anything about it now.  She did settle after 2 months at the 1.5mg and then we tapered again. She did good with the first decrease to 1.25 but we, again, tried too soon and with too big a decrease to 1.0mg.  I found this site and so we finally began the 10% (actually it was more like 7%) tapers throughout 2017.  In 2018, we have done a few larger tapers (15%-20%) Only because she was having withdrawals with every decrease and so I talked it over with her dad and we said, "if she is going to stuggle no matter what the decrease, let's try a little bigger one to see what happens."  We did find that she followed the same pattern....day 1 and 2, she was happier and more alert, day 3 to 4....crash and awful until day 8 or so. Then she started to SING and smile off and on after that and then through week three have waves and windows but get progresively more stable.   As she has gotten lower on her dose (below .65mg) we have really seen more windows of her talking and singing. So we know 'she is in there'   After her last decrease, she did wander around more, have a 3 day stint of increased urinary frequency which we had never seen before.  So we are holding her until after her brothers wedding in June. We know her brain needs to rest after two larger decreases.

 

So as far as your brother goes....and of course i am not a doctor and the moderators on this site know much more than me....consider reinstating at a lower dose than he was on....and then hold for at least 3 months and see where he lands.  If he is still having a lot of symptoms after a week or two at your reinstated dose, maybe up it a little...and just keep holding.  We did eventually end up at her original dose, when she did her first too fast taper/CT, but i think that was before we knew it takes her 3 weeks to settle down after any decrease.  

 

So good luck Banana and be kind to yourself.  You can't fix them.  Who knows why we have to watch the one's we love suffer.  I have no idea. My beautiful daughter certainly doesn't deserve it.  But she seems to mind less about things than i do, so i just have to love her and know i am doing the best i can to take care of her but that doesn't mean i forget to enjoy life myself too.  That is all any of us can do. There is no quick fix in this.....patience is all of our best lesson.

 

Peace, Glo's mom

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Banana121
On 11 May 2018 at 5:16 PM, Glosmom said:

Hi Banana121 and powerback,

Interject away! Fine with me....the more minds working on these issues the better :)  I agree with powerback...setting boundaries is very important.  I have a long history in growing and learning how to deal and cope with my daughter. She is mentally handicapped so it took years as a mother to learn to deal with wanting a 'normal' daughter and getting a 'special' one instead. Through that process i ultimately realized i needed to take care of myself first (see friends, visit family, exercise, eat right, enjoy life) if i was going to be able to take care of her.  Through the years she grew into a very sweet girl, l learned to just let her be and still be myself,  and we had a very simple but sweet life.  The set back that occurred with her 2 years ago was FAR WORSE for me to deal with....so that took a little longer for me to get back to the same conclusion....I needed to take care of myself first, in order to be around to take care of her.  I was very mad, sad and depressed in the beginning of her psychosis issue (becase a medicine wiped out my beautiful daughter); but ultimately, thanks to this site and other stories of people finding ways to get back to their 'normal' self or close to it, gave me peace that we just needed to take the time and let her body and mind lead the way.

 

So, my initial dream to 'get her off this med' failed miserably as most of us on here find out.  So after the cold turkey we did in January of 2017 ( i still hadnt found this site) we reinstated her all the way back up to her 1.5mg dose after three weeks of her not getting better.  I do wish i would have known that we could have tried a lower dose (so I am thinking .5 mg) and just held her there until she stabilized.  But we didn't and so be it, can't do anything about it now.  She did settle after 2 months at the 1.5mg and then we tapered again. She did good with the first decrease to 1.25 but we, again, tried too soon and with too big a decrease to 1.0mg.  I found this site and so we finally began the 10% (actually it was more like 7%) tapers throughout 2017.  In 2018, we have done a few larger tapers (15%-20%) Only because she was having withdrawals with every decrease and so I talked it over with her dad and we said, "if she is going to stuggle no matter what the decrease, let's try a little bigger one to see what happens."  We did find that she followed the same pattern....day 1 and 2, she was happier and more alert, day 3 to 4....crash and awful until day 8 or so. Then she started to SING and smile off and on after that and then through week three have waves and windows but get progresively more stable.   As she has gotten lower on her dose (below .65mg) we have really seen more windows of her talking and singing. So we know 'she is in there'   After her last decrease, she did wander around more, have a 3 day stint of increased urinary frequency which we had never seen before.  So we are holding her until after her brothers wedding in June. We know her brain needs to rest after two larger decreases.

 

So as far as your brother goes....and of course i am not a doctor and the moderators on this site know much more than me....consider reinstating at a lower dose than he was on....and then hold for at least 3 months and see where he lands.  If he is still having a lot of symptoms after a week or two at your reinstated dose, maybe up it a little...and just keep holding.  We did eventually end up at her original dose, when she did her first too fast taper/CT, but i think that was before we knew it takes her 3 weeks to settle down after any decrease.  

 

So good luck Banana and be kind to yourself.  You can't fix them.  Who knows why we have to watch the one's we love suffer.  I have no idea. My beautiful daughter certainly doesn't deserve it.  But she seems to mind less about things than i do, so i just have to love her and know i am doing the best i can to take care of her but that doesn't mean i forget to enjoy life myself too.  That is all any of us can do. There is no quick fix in this.....patience is all of our best lesson.

 

Peace, Glo's mom

Thank you oh so much! Your advice is really helpful. The support here on this website is amazing. My brothers reduction patterns are similiar, he does better after 10 or so days. Im thinking of doing a really really low dose at first to test the waters as I have read so many horror stories on adverse reactions on reinstatement. 

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SkyBlue

Hi Glosmom, 

 

I'm glad your daughter has you and her father for support, and that you're now going by 10% per month.

 

I just wanted to make sure, are you and he both on the same page as far as taper rate, desire to taper, etc.? 

 

It is quite a challenging situation and I wish for strength for you all. < 3

 

 

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Glosmom

Hi SkyBlue, Yes we are on the same page.  Even though we are divorced both of us have always worked well together where our 3 children our concerned, especially Glo since she is unable to live independently.  So it is actually very comforting to have someone else have eyes on the situation and be able to bounce ideas and thoughts off of. He is not reading stuff out there on the internet so he can sometimes be a good voice of reason when i start to ruminate to much about what we should or should not be doing. :)

Thanks again for checking in with me!

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SkyBlue

I'm so glad. And you're very welcome!

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NicoBicko

Hey glosmom, how is your daughter? Your remind me on my mother :) you strategies to cope with the situation are great, especially that you take care of yourself. The worst thing for my mother was, when she totally isolated herself because of my disease and stopped meeting her friends. But she realised quickly, after the situation became more and more tense between us, that she need time for herself to recharge energy. I feel strong symphaties for you because I was in an similar age to your daughter when I got ill. I wish you and your family all the best for the future :)

 

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Glosmom

Hi NicoBicko, thanks for checking in on Glo and for your very kind and supportive words!!  She is hanging in there. Last drop in dose has been tough on her but we are holding steady and waiting for her to stabilize.  I have to constantly remind myself that this all takes time and she can't be healed over night.  I do fear i will never get my sweet daughter back, so am trying to accept my 'new' daughter and not compare her to who she used to be.  We do have happy things going on in our family (her brother is getting married in June) so we are trying to expose her to as much as we can without making her stressed out and i am trying to let go that happy things are going on even though she doesnt really want/or cant participate.  In the end, i am choosing to be grateful for whatever we have and that makes me able to laugh and find joy throughout the day.

 

Thank you again for your support and i hope that you are doing okay too!

Peace,

Glosmom

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Glosmom

I feel very compelled to share this painful lesson in an attempt to potentially help others. There is somewhat of a happy ending so bear with me if you are interested.

 

 Glo is my special needs daughter and she lives with me and also her dad.  She goes back and forth between our houses each week. We are committed (even though we are both now married to other people) to help Glo get off this poison med (risperdal).  She became psychotic after taking prednisone for hives (4 days on it only...never got better so started risperdal in oct 2016) and so it has been a rough journey for the last 2 years.  We typically communicate well on when we administer Glo's dose and for what amount.  We were on a 'stabilization' period (or so we thought) for the last 7 weeks as we wanted her to be as good as she could be for her brother's wedding (which is in 2 days)  We also wanted her to be good for when she went to camp back on June 3rd...but she wasn't able to go because she was not doing well. We agreed back on April 26th when we 'dropped' her to .41mg to stay there until after the wedding.

 

Glo has been struggling with pacing, confusion, urinary frequency and insomnia and many other things.  It was worse in the beginning but she did get a little better over the weeks but i have been disappointed with how many symptoms she has continued to have over the last several weeks and have not seen any stabilization....  Insomnia being the worst and anger spells and confusion.  I kept reading how 'holds' made people feel better and so we just kept saying, we will just 'hold' her longer.  He and i both discussed how she just might not ever return to her normal sweet happy beautiful self.

 

He came to pick her up from my house yesterday and so i took the syringe out to him so we could talk about 'what dose are we going to next' and when we were going to go there after the wedding.  As we were both looking at the syringe he said, "i am not giving her that dose (.41mg)...I am giving her this dose (.46mg)"  This is approximately a 10% difference in dose, fyi.

Well needless to say I wanted to vomit and then i wanted to hit him.  I did neither but spent the evening after he left being mad and sad. I cried a little and was just sick to my stomach with how my poor Glo has been struggling because we have been giving her two different doses.

 

Once i got up this morning, i went back over my journal that i keep of her sypmtoms, doses and days between her dad and i.  The pattern showed up very clearly.   She would do better at his house and get worse at my house.  Back and forth, back and forth...her dose would bounce between .46 and .41 whenever we switched houses (which was at least once every week)

 

This poor baby has been in central nervous system hell for the past 6 1/2 weeks INSTEAD of in the stabiliaztion period we thought we were in..............oh my god........ how awful, huh?

 

Well the good news is, i didn't hit him or yell at him. :)  I found the pattern, we talked it over and landed on a plan to give her the SAME dose (.44) until she stabilizes. Glo is going to feel better soon!!!!.... now that we know we have been jacking her brain around.  She will one day finally get off this drug.  I have hope that she may one day return to a happier and more stable  self.

 

VERY IMPORTANT LESSONS:  Although we knew consistent dosing was key...we weren't giving her a consistent dose.  This up and down caused major symptoms.  Always take the same dose at the same time every day.   10% is a big difference in how someone feels and functions.  The reason she was not doing well and felt bad was because she wasn't in a hold pattern. Some of you may be struggling....it could be because your doses are not consistent.  It could be because you haven't held long enough.   Don't give up.....Don't get mad.....Get determined....Have Hope...... I am postive i will report back that Glo is doing better in a week or so.

 

Thanks for listening.......Glosmom

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Altostrata

Brilliant, Glosmom!

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Carmie

Great post Glosmom💚

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Glosmom

Update:  We settled on the .44 as a compromise to the yo-yo dosing that occurred (described in my June 14th post) between glo's dad and i.  Glo still struggled at this dose with pacing and anger fits. So after 9 days I concluded that it must have been too high of a compromised dose (probably then it was an 'updose' from where she had been for the last 45 days (me gving her .41mg, her dad giving her .46)) So we dropped her to .41mg to see if it would help with her symptoms (symptoms that which were actually worse at .44 than when with the yo-yoing dosing) 

 

She seemed a bit better at the .41mg dose, but again, i just felt like she was not doing well.  It wasn't her typical withdrawal pattern i was seeing. It was agitation, pacing, and awful insomnia (she was up 6 nights in a row pacing, anxious with just a few hours of broken sleep...I know because i was up with her the entire time..so no sleep for me either)......thus i concluded she had caught a case of the dreaded 'akathisia'.  She had never in the entire time of being on risperdal had that many nights of insomnia in a row. 

 

However, I was seeing, at the same time, less fear with her leaving her room, coming down the stairs and wanting to 'go do something'  Glo hasn't wanted to 'go do something' since we put her on this damn drug in October of 2016.  I was also seeing her say more words/sentences, be more independent with her shower, getting dressed, and remembering how to operate lights, cell phone and TV. So those were GOOD things....a clearer brain, but a more anxious brain.  Since Wednesday July 4th, I have taken her to the pool, get ice cream twice, shopping, out to dinner twice, to a bridal shower and other random road trips.  All at her request...these were short trips that ended quickly with 'i want to go home.'  But none the less, more trips in the past 4 days than she has taken in the last 2 years.  Her brain is changing.....

 

So i started reading every thread on here i could find related to updosing, akithisia, reinstatement, tapering stories i hadn't read before and rereading the ones i had read.  My instinct was telling me we needed to do another decrease to 'relieve the pressure.'  Let me explain..... we had her brain bouncing around with two different doses for 50 days, we settled at too high of a compromise dose when we put her at .44 mg (she was on that dose for 9 days), the then the .41mg dose was still in the range where she had been for the last 70 days. In my parental opinion, we needed to get her lower than where she was so her brain could start working in a different way (i.e..the withdrawal pattern of a decreased dose) to help with our current, and unfortunate situation.

 

So we dropped her to .39 mg on Friday evening and.............. good things have shown up...yesterday her pacing although still there, was less.  She actually was laying on her bed, and every bed in the house for many minutes at a time during the day.....she was finally getting just plain ole' tired....and she was able to just be still for awhile.  She did continue being anxious at times too and still wanted to 'go' but in a less severe pattern.  One of our trips yesterday at her request was to go to the mall. So off we went....and she actually walked around and looked at the clothes and wanted to try something on!  She talked to me during this trip.  This was HUGE progress...as she was able to control her agitation and pacing..AND HUGE progress in that she hasn't been able to 'shop' like this since she started on risperdal! Who would of thought a super short trip to the mall could be so wonderful!

 

Also Glo fell asleep last night (Saturday) at 9pm......and is still asleep now :)  

 

I anticipate we will continue to see a better week. I will check back and let those of you who stop by and read about her taper know how she is doing. But I am feeling pretty good (not to mention, i got to sleep last night too :) ) about having made another decrease to .39 mg  (btw..we had her on the recent .41 mg decrease for 12 days before we dropped her to .39 mg So yoyo dosing- 50 days, .44 mg -9 days, .41- 11 days = 70 days ) 

 

So yay! that we are in the '.3's" and yay! that glo slept and yay! that glo shopped and yay!!....that we are moving in the right direction again...down to ZERO one day :)

 

Peace....glosmom

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Glosmom

For anyone interested in 'my take' on what is going on with Glo

GTFOTP.docx

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Altostrata

That doesn't seem to be a valid attachment. Can you convert to a pdf and attach that?

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Glosmom

Thanks, Alto. I do have a pdf but it is 550...and the site only allows 490 :(  so i didn't attach

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Altostrata

Can you put it in Google Drive and post a link?

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Glosmom

ok...tried that....

 

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Altostrata

Interesting conceptualization.

 

The two stacks of boxes -- I think you're showing potential deterioration, depending on prior stability? That's a little unclear. But probably a good model for what's going on.

 

How far a person can push a reduction is highly individual. We regard "slightly unstable" as a sign not to take chances and generally recommend a hold on tapering until stability reasserts.

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Glosmom

The intent with the stacks of boxes and the arrow in between was to represent a 'decreased dose.' So the second box would be the state of your brain on the new / lower dose.  Maintaining a 'stable' brain is the ideal, but with so many confounding factors maintaining a 'stable brain' becomes more difficult as so many of us (rightly or wrongly) continue on with tapering in the less than ideal state.  It most definitely is a learning process!  Thanks for your assistance in helping me to find a way to get it posted.  Stuff keeps me up at night and so it was one of those things that i wanted to do.  Thanks again!

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Altostrata

You're welcome. How is Glo doing?

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Glosmom

She is hanging in there.  She is sleeping better and her pacing is not as bad as it was.  She gets dressed on her own and is almost able to bathe on her own. So we are seeing improvements from the crazy yo-yo period. Still not our normal 'Glo' but we continue to believe she will return when she gets off this med. Thank you for asking about her :) and i hope life is good for you!

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Altostrata

Good to hear. Take it slow.....

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Glosmom

Update: Glo is 8 days post decrease to .36mg and is doing well.  She has slept 7 days in a row and is no longer pacing.  Still having issues with concentration, memory and focusing on TV or videos, but she IS listening to her music. The period of time where she suffered with urinary frequency (?PGAD) has completely resolved as well. I would say that period of time lasted about 6- 7 weeks. She finally seems to be in a place of calm.  So after an unfortunate period of yo-yo dosing, and trying to find the right dose post that incident to land on to let everything settle....i think we  finally found it.

 

Just wanted to offer encouragement to those that are in a rough spot that times can get better.

 

Looking forward to giving her brain a 'real' rest period/hold before we continue her journey to zero.

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Altostrata

That is very good news, Glosmom. What does Glo think about what she's been through?

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Glosmom

Hi Alto,

Glo isn't able to articulate well. Even before the prednisone induced psychosis event, she had developmental delay and speech issues.  So articulating feelings beyond happy sad good and bad or understanding abstract thoughts were not in her wheel house.  Her language skills have been markedly decreased the last 2 1/2 years. So she is able to say when she has pain or doesn't feel well and she talks about wanting to take trips and go places on occasion.  But when we talk about what is going on with her we say things like 'we are waiting until 'your brain is better'  She seems to under stand that......  When she is in withdrawals she doesn't talk at all and just stares.  When she feels better she turns on her music and will work on her calendar or color or play cards.

 

She is verbalizing more about wanting to go places but then when we take her there, she wants to leave after 5 minutes.  This is not how Glo used to be as she loved to travel to many places (car, bike, air) so we know there is work to be done. It is hard to say whether it was the original prednisone event that caused this or the antipsychotic side effects that she is under.  Reading about others and how they "dont feel themselves", "don't have motivation",etc... is what i imagine she is going through.  But compared to the original event (when she was unable to speak, go to the bathroom, take showers, feed herself, barely move) she has come along way from there. But still has a long way to go to getting back to her normal self.  So I think glo knows 'her brain' is 'not right' and she knows when she feels well and feels bad, but beyond that it is really hard to know what she really knows.  Most of it is parental intinct and other family input on seeing her improvements when they see her after some time has passed.

 

Hope that makes sense. We are happy to see her more at ease for sure!

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Glosmom

Update - Glo's taper is continuing to progress.  Happy to report our strategy of continuing to decrease her doses (microtapering) over the summer resulted in the continued easing of her pacing/akathisia and urinary frequency that resulted from our "April snafu."  Her insomnia alsoalmost entirely abated and she was sleeping about 5 out of 7 days. 

 

We decided at the beginning of October to do a larger decrease.  Since we are now on the 1 mL syringe we can decrease by .1 mg decrements. We wanted see if she could tolerate a drop from .4 mg to .3 mg as she was pretty much at her 'withdraw baseline' (and since she had withdrawal symptoms even with the microtapering but always felt better in 10 days). So wanted to see if her withdrawal symptoms would be worse/better/same.  I am happy to report that after 2 weeks from her decrease she is managing ok.  Day 1 and 2 she had increased energy, increased talking and aletness. Day 3 through 10 she had her standard nausea, increased insomnia and anxiety.  However, she did not have any increased pacing or urinary frequency.  When she speaks her voice is more clear.  After day 10 her sleep returned, she watched The Voice two evenings in a row :) and she is now singing more. She actually went to her brother's apartment to hang out with him while my husband and i went to an event.  She was able to tell her brother when she was ready to go and he reported that when he spoke to her, she responded in one or two word responses. That was NOT the case for most of the past 2 years.

 

We believe the lower dose is equating to a clearer mind for Glo. We will continue to monitor for withdrawal symptoms and plan to hold her at this dose into November and then will reassess at that time. We are hopeful that we are actually going to have her off this med in January. Glo is still not her normal self by a long shot, but we see quite a few bright spots since this last decrease (smiling alot more too).

 

I continue to be grateful for the folks that come back and report on how they are doing, especially those tapering antipsychotics. I have read and reread most of the tapering schemes for the antipsychotic tapers and have studied their percentage drops near the end.  There seems to be a pattern for some that are able to tolerate larger than 10% decreases as long as they HOLD for longer than 4 weeks.  I believe Glo may be able to join the group. We have been caring for her and watching her closely the whole way.  She is now verbalizing that she doesn't want her medication any more. So we are helping her understand that we have just a bit more to go before we can stop.

 

Some things that we believe have and are helping Glo are: 1)  listeing to her favorite music without head phones, 2) using LaurnaT's right ear listening with head phones to high frequency (violins/classical) music between one to 2 hours a day (we see that it calms her especially when we take care rides), 3) eating one raw garlic clove a day (also seems to have had a minor calming affect) and 4) using epsom salts in her baths. 

 

Wishing good health and success to all on this journey. Peace, Glosmom

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sunnylou

Hi Glos mum, I've been reading your posts four some time, and keep meaning to say hi. I really admire how you are helping your daughter off this drug as slowly and steadily as you can whilst having feelers out to get all the knowledge you can acquire to achieve this. 

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