Freeby60: this month is the 24th anniversary of getting on ADs - 24 years!

[Freeby60]

1/3/22

7 am - wake, no symptoms, good mood

9:15 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

 

Today I went back to work. I work from home as a writer. It was a good day. I didn't shred my mouth while on the computer and did not get a headache. I got up hourly away from the screen. 

 

5:30 pm- omegas, magnesium chloride 1000 mgs

7:45pm - soft palate spasm 

9:30 pm - Quetiapine fumarate 21 mgs

11 pm - sleep 8.5 hrs uninterrupted 

[Freeby60]

11/4 Tues

7:30 am - woke with no symptoms 

 

I noticed a slight blemish on my cheek yesterday thinking nothing about it. Today it is redder and I realized it jas been a really long time since I've had a blemish. Could be dry skin, which could also explain my itchy skin on my arm yesterday, but I thought I'd document it here JIC. 

 

8:00 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

 

Mood good. Slightly unfocused while writing which isn't unusual once in a while. 

 

5:30 pm- omegas, magnesium chloride 1000 mgs

6:45pm - soft palate spasm while singing

9:30 pm - Quetiapine fumarate 21 mgs

11 pm - slept nine hours.  Actually remembered snippets of a dream or waking during a dream for the first time ages!

[Altostrata]

28 minutes ago, Freeby60 said:

6:45pm - soft palate spasm while singing

 

Do you get this spasm at about the same time each day?

[Freeby60]

55 minutes ago, Altostrata said:

Do you get this spasm at about the same time each day?

Maybe. I have had them during mornings also. But recently more in the evening. 

[Altostrata]

Please note whenever you get this type of spasm. Do you recall when it first happened?

[Freeby60]

1 hour ago, Altostrata said:

 

Please note whenever you get this type of spasm. Do you recall when it first happened?

 

I will! It started the day before I made me first Quetiapine cut. 

[Freeby60]

1/7 Friday 

7:30 am - wake no anxiety W/ good mood

7:45 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

8:45 am soft palate spasm x2

10 am - working at desk on computer 

11:15 am - soft palate spasm

2:30 pm - soft palate spasm

6 pm - soft palate spasm

 

This is an increase in the number of spasms I get daily. I think it's safe to say they happen throughout the day. Perhaps I'm noticing them more now?

 

7 pm- omegas, magnesium 

chloride 1000 mgs

Another quiet evening symptom-wise. 

7:45 pm - soft palate spasm.

9:30 pm - Quetiapine fumarate 21 mgs

10:30 pm - sleep 9 uninterrupted hours

 

 

[Altostrata]

I think you probably are noticing them more. When do you want to make your next quetiapine reduction?

[Freeby60]

1 hour ago, Altostrata said:

When do you want to make your next quetiapine reduction?

I'm ready to make another cut anytime. 

[Altostrata]

It's been a week, how about another 1mg reduction?

[Freeby60]

1 hour ago, Altostrata said:

It's been a week, how about another 1mg reduction?

Sounds good. That means down to 20 mg. 

[Freeby60]

1/8 Saturday

7:30 am - wake no anxiety W/ good mood

7:45 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

8:45 am soft palate spasm x2

10 am - working at desk on computer 

10 am - soft palate spasm

2:30 pm - soft palate spasm x2

6 pm - soft palate spasm 

6:40 pm - soft palate spasm***

7 pm- omegas, magnesium 

chloride 1000 mgs

10 pm - Quetiapine fumarate 20 mgs

11 pm - Sleep and Mild anxiety with an edge. Listen to a guided meditation and sleep 9 uninterrupted hours

*** I think it's hard for me to focus on more than one symptom at a time. I notice I'm not showing much in tongue or jaw symptoms. Or the tongue jaw symptoms have reduced?

 

---------------

Personal narrative for my records and your benefit

 

Amazing to me that this isn't affecting my sleep. I assume it can at anytime. In my before life I could fall asleep on stimulants as if it were any other night. Easy peasy. I now understand that ability to be a life-saving defense mechanism I developed to survive my childhood. 

 

Also, I don't underestimate the effect my chemically altered brain is having on my sleep patterns. My guess is my overmedicated brain is “helping” me to sleep. So, I've been an “amazing” sleeper all my life. Depersonalizing or disassociating also come to mind. 

[Altostrata]

5 hours ago, Freeby60 said:

Or the tongue jaw symptoms have reduced?

 

Please try to assess this. It's important.

 

It's possible you never needed Seroquel to sleep, or that much less would have the same effect.

[Freeby60]

6 minutes ago, Altostrata said:

 

Please try to assess this. It's important.

 

It's possible you never needed Seroquel to sleep, or that much less would have the same effect.

Yes, I realize it's important!!

[Freeby60]

1/9 Sunday

10 wake - wake no anxiety W/ good mood

10:15 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10:40 am -Soft palate spasm 

10:50 am -Soft palate spasm

1 pm - got into bed to take nap and

 slept 3 hours. 

5 pm - aware of mild tongue movement

6 pm- omegas, magnesium 

chloride 1000 mgs

9:15 pm - soft palate spasm, tongue movement 

9:30 pm - Quetiapine fumarate 20 mgs

10 pm - tongue pushing against teeth

10:30 pm - sleep, 10 hours

 

---------------

There are certain times when I can count on seeing my tongue dancing in my mouth- during flossing is one. I don't floss daily (tsk tsk) but tonight I did and there was no tongue dancing. I plan on flossing regularly, to monitor this! Scrubbing to clean pots with repetitive hand movements also is a trigger. Guess I'll hand wash those dirty dishes. My tongue continues to prefer to rest poking outside my teeth. I think I will also ask people who know about my TD and see tongue movement when I talk to keep an eye out, also.

 

I definitely needed more sleep after this cut. Although 10 hours at night happens occasionally if I'm not setting an alarm. I continue to notice soft palate spasms. When I get out of bed I enjoy a cup of decaf on the couch with hubby and fur baby (old man Dallas). This is when I experience a fair amount of spasms. I also notice them at night. While working, not so much. I'm going to keep a pad on my desk just for that. Try to confirm that it is mostly mornings and evenings.

 

 

Have a great day!!

 

 

[Freeby60]

1/10 Monday 

9:30 am - wake, no issues

10:15 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10:30 am - soft palate spasm

11 am - 4 pm - Difficulty concentrating for work today. 

3:00 pm - soft palate spasm

3:50 pm - soft palate spasm

5:00 pm - soft palate spasm

5 - 5:30 pm - working on untangling Christmas lights my tongue was as busy as my hands.

6:30 pm - Did some dishes and experienced mild tongue activity. It is usually more than that, but doesn't always happen, so hard to pin down.

6:30 pm - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

8 pm- aware of tongue movement 

9:30 pm - Quetiapine fumarate 20 mgs

 

--------------

The earliest TD symptom I had was the following-

 

The first time I became aware of tongue movement I was scrubbing my kitchen sink and it felt like my tongue was pushing against the back of my teeth rhythmically. If I sped up my scrubbing my tongue would also speed up. I can't say it happened every time I scrubbed stuff, either. I don't think it was, or is now, that predictable.

 

Some time later I had occasion to put on some lipstick and I saw with my own eyes for the first time my tongue wiggling back and forth speedily inside my mouth. My heart sunk. I realised it had to be Tardive Dyskinesia. My Pdoc denied it was possible, “I don't know what to tell you, kiddo.” 

 

The next time I was confronted with my TD was when my sisters and husband all confirmed they saw my tongue wiggling when I spoke, plus one very rude coworker who brought it to my attention and everyone else in the room. When pharma came out with it's first TD med my doc happily offered it to me. I tried it for a day or two and finally came to my senses. I would not take it. 

 

So these two main symptoms; subtle tongue movements I am unaware of; and fast repetitive movements associated with repetitive hand movements were my original symptoms. 

 

On top of these symptoms I have acquired jaw issues in the last year and as recent as a few months ago I began to suck on my tongue and lips, chew on my tongue, and my tongue rests outside my teeth.

[Freeby60]

On 1/9/2022 at 5:16 PM, Altostrata said:

 

On 1/9/2022 at 11:33 AM, Freeby60 said:

Or the tongue jaw symptoms have reduced?

 

Please try to assess this. It's important.

 

It's possible you never needed Seroquel to sleep, or that much less would have the same effect.

 

 

This morning my husband told me he sees my tongue move every day whenever I talk. But not recently!!!! Since I am blessedly unaware of the tongue activity when I talk, I have recruited him to tell me if he sees it. 

 

I was given the Seroquel in hospital for a panic attack I had one night. I surely didn't need it to sleep. I slept fine; I was awakened by panic. They gave it every night, and when I was released my pdoc told me to keep taking which I did, stupified by it all.

 

We’ll keep watching!!

 

 

[Freeby60]

9 hours ago, Freeby60 said:

6:30 pm - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

This is a mistake. It should read 

6:30 pm- omegas, magnesium 

chloride 1000 mgs

[Altostrata]

Not to worry, Freeby. You're doing very well with your daily notes. 

 

We want to minimize that Seroquel!

[Freeby60]

Yes, I agree! Admittedly, I feel urgency, but also caution. I'm relieved that my husband says, of late, he hasn't seen my tongue movement while I talk. He has previously described it as ever-present. It is also a symptom that has been around for a good 5 or more years.

[Altostrata]

You should be proud of the way you're taking charge of your health, Freeby.

[Freeby60]

1/11 Tuesday

9 am - wake with no symptoms and a good mood

9:30 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10-11:30 am - No tongue movements visible to hubby when we are talking. Yay!!

12 pm - I am aware of small movements in my tongue

2:40 pm - soft palate spasm

3:00 pm - soft palate spasm

4 pm - aware of mild tongue movements

6 pm- omegas, magnesium 

chloride 1000 mgs

6:08 pm - soft palate spasm, aware of tongue movement 

6:20 pm - soft palate spasm

8:30 pm - tenderness in jaw

9:45 pm - Quetiapine fumarate 20 mgs

10 pm - soft palate spasm

10:30 pm - sleep 9 uninterrupted hours

[Freeby60]

1/12 Wednesday 

7:30 am - wake, mild anxiety that passes

8:15 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

9:25 am - soft palate spasm

11- 4 pm worked. Was not aware of much tongue movement or soft palate spasms. I was tired and napped for an hour.

4:30 - 5:30 pm napped 

Soft palate spasms, tongue movement, jaw all remain unremarkable. 

5:45 pm - mild tongue movement,  omegas, magnesium 

chloride 1000 mgs

6:15 pm - soft palate spasm

Soft palate spasms, tongue movement, jaw all continue to remain unremarkable in the evening for 2nd night

10:15 - sleep uninterrupted 10 hours

[Altostrata]

How much quetiapine did you take?

[Freeby60]

15 minutes ago, Altostrata said:

How much quetiapine did you take?

I took at 9:30 pm 20 mg. I am ready to make another cut. Do you think I can go to 10% or continue by mg (which we did during the holidays). My first cut was 10%.

[Altostrata]

Yes, you can decrease quetiapine by 1mg again.

[Freeby60]

1/13 Thursday 

8 am - wake, no ax and good mood

8:30 am- Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

9:20 am - soft palate spasm

9:23 am - super mild anxiety passes almost immediately 

10:04 am - spasm 

Feeling good a nice relief again so far in symptoms, husband still doesn't see my tongue moving when I talk which is fantastic. 

6:30 pm - soft palate spasm

6:30 pm - mild tongue movement,  omegas, magnesium 

7 pm - soft palate spasm

 

I still notice my tongue prefers to rest outside my teeth against my lips. 

It also sometimes pushes rhythmically but slowly against my inner lips. 

 

9:30 pm - Quetiapine fumarate 19 mgs

10:15 pm - slept 10 hours

[Freeby60]

1/14 Friday

8:30 am - wake, no issues

9:15 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10:30 am - sp spasms x2

11 am - Emotional 😭 

4 pm - sp spasm, need Nap 

5:30 pm - mild tongue movements

6 pm - omegas, magnesium 

chloride 1000 mgs

8 pm - sp spasm

9:20 pm - tongue movements 

10:30 pm Quetiapine fumarate 19 mgs

11:00 pm sleep uninterrupted 

[Freeby60]

9:30 am - Woke with headache which did not resolve.

9:45 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

11:00 mg - Sps x2 

11:30 am - Nap very tired headache

2:30 pm - Lower left side in back painful (from exercise?)

2:30 pm - Nap - headache 

6 pm - omegas, magnesium 

chloride 1000 mgs

7:30 pm headache milder

7:50 pm - tongue movements 

9:30 pm - Quetiapine fumarate 19 mg

10 pm - sleep uninterrupted 

[Altostrata]

8 hours ago, Freeby60 said:

9:30 am - Woke with headache which did not resolve.

 

Does this happen often?

[Freeby60]

1 hour ago, Altostrata said:

 

Does this happen often?

No, it is not usual.

[Freeby60]

1 minute ago, Freeby60 said:

No, it is not usual.

I will add that I do experience headaches or jaw aches from the TD. But this felt more like it was part of being tired. I took my temp because headaches and malaise were my main symptoms along with low grade fever when I was Dx with DILE. No temp. I chalked it up to possible WD.

[Altostrata]

Yes, let's see if it shows up again.

[Freeby60]

1/17 Monday

8:00 am - wake, no anxiety, 1 soft palate spasm 

8:30 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10:45 am - mild anxiety in waves then passes 

11-4 pm - work, aware of some tongue activity.

5:30 pm - bit my tongue when eating 

6 pm - omegas, magnesium 

chloride 1000 mg

7 pm -aware of tongue movements 

8:00 pm - sp spasm

8:30 pm - sp spasm 

9:30 pm - 9:30 pm- Quetiapine fumarate 20 mg** I accidentally updosed

10 pm - sleep uninterrupted

[Freeby60]

1/18 Tuesday

8:15 am - brief anxiety 

8:30 am - Duloxetine 60 mgs, Clonazepam 0.5, Escitalopram .13 ml/13 mgs, Probiotic

10:30 am - washing dishes triggers tongue movements- not rapid.

10:45 am - husband saw tongue movements not as rapid or forward in my mouth as usual.

11:00 am - walking on treadmill triggers anxiety and spike in heart rate. Deep breathing helps manage it. I don’t usually get anxiety on treadmill. 

12-4pm -I worked at my desk for most of the day. I noticed my tongue pushing against my teeth and lips a fair amount.

5:30 pm - tongue moves during washing dishes less vigorous or faster than usual

6 pm - omegas, magnesium 

chloride 1000 mg

7-9:30 pm - mild intermittent tongue movements 

9:30 pm - Quetiapine fumarate 19 mg

10:00 pm sleep uninterrupted 

[Freeby60]

23 hours ago, Freeby60 said:

- 9:30 pm- Quetiapine fumarate 20 mg** I accidentally updosed

I think this caused my tongue to “updose.”  My tongue was spotted poking in and out my mouth ( poking out rather than rapidly moving side to side is completely new ) rapidly 3 pokes just now while talking to my husband and yesterday I felt a lot of movement throughout the day.