Comfyquilt: Hello - issues with Benzos and new med

[Comfyquilt]

@Frogiei am sure hoping he does!!! He will allow me to go as slow as I need but will want me to start soon. Even if I could take a little off he will want that. I am going to try and ask about how long he’s willing to let me taper. Last time we went down by 0.5’mgs every 2-4 weeks or 0.25 if I wasn’t feeling well. This method did work. But he did prescribe the 0.25mgs I was on for 18months. I guess I also have this idea that to get better I need off ASAP. I am going to have to work on that. 

[Frogie]

@Comfyquilt

 

0.5 mg every two weeks is A LOT! 

 

I'm just afraid you will end up in bad shape with wd and your CNS.

 

We don't promote more than 10% and month and with a benzo it could be less.

 

Please try to explain the situation you are in and you don't want to get any worse.

[Comfyquilt]

@Frogie - he follows Ashton! I’m not sure what to do!! Will see if can go slower. Maybe going so fast last time made me unable to jump, who knows! But yes last time he had me reduce 0.5mgs every 2 weeks!!! I did sometimes only reduce 0.25mgs 

[Frogie]

@Comfyquilt

 

I would just explain to him that you ended up in this mess because you tapered off Valium way too fast last time and you would like his blessing to taper at your own pace that you can not go through that again.

 

Like I said, dr.'s don't understand what this does to you and you have to be your own advocate.

 

[Comfyquilt]

@Frogieyes I am going to explain this. Is there a tapering plan I can bring him? He does follow Ashton which is why I need to bring in something to show him. 

[Comfyquilt]

@Frogie - good news he called randomly to check in on me. We spoke about tapering. He said “you can take as long as you need, I don’t care if it’s a milligram a year” - direct quote!!  So need to worry about that. He said he can prescribe liquid compound as well. Phew!!!! I see him in person on the 22nd. I will ask about liquid then as my scale isn’t reliable. I might do half tablets half liquid and slowly start reducing the liquid in another month or so! 

[Frogie]

@Comfyquilt

 

That is great news! If you do decide to switch to the liquid let me know because you can't switch straight over to liquid. You have to transition from tablets to liquid. Make sure you have a supply of tablets so you can make the switch over easier.

 

But that's great news!

[Comfyquilt]

@Frogie yes one less thing to worry about. He also said to wait until it’s been a month off mirt before reducing at all. So that gives me another few weeks here to stabilize. He said sometimes the Wd from mirt shows up in week 3 so to just be aware of that as well. He mentioned the morning shakes were the left over mirt coming out of my CNS and possibly the Lyrica too. So once I am stable in March (fingers crossed) I shall begin my Valium taper again, this time slowly and safely with holds should I need them.  

[Frogie]

@Comfyquilt

 

That sounds great. Just let me know when you are ready and I'll be happy to help.

[Comfyquilt]

@Frogiereally bad night tonight - it feels like benzo wd. I took my 2.5 mg dose at 1:00pm and it felt like nothing (usually get a little relief). All afternoon it just felt like withdraw. Bad anxiety, pulling feeling in the back of the head, rumination, crying etc etc. YIKES. I am not sure what is going on!! A barrage of new symptoms.‘I’m not sure if it’s the Valium or what!? 

[Frogie]

@Comfyquilt

 

I think it is the Mirtazapine wd. You've only been off of it a few days compared to how long you were on it.

 

It's just going to take time to feel better.

 

You might keep notes for a few days so we know exactly what is going on.

 

Keep Notes on Paper

 

Hang in there, I think you are on the mend.

[Comfyquilt]

@Frogie yes I will keep track here for a few days

[Comfyquilt]

Hi @Frogie I have kept detailed notes for 3 days for you. Please see below.

 

2022-02-25 

4:30am - wake feeling WD sweaty 

4:30-7 am - toss and turn, feel awful 

7am - out of bed peppermint tea, anxious shaky, stomach upset, vomited 

8:30am - walk kids to school, anxious and shaky 

8:45-9:30am - walk, bad anxiety lots of crying 

10am - breakfast 

12pm - therapy 

1-2pm - walk home from therapy 

2pm - lunch and 2.5 mgs Valium 

2:30 - walk to school pick up (feeling bad and teary, want myself back so badly) 

2:30-3:30 - walk home do not like feeling of Valium it’s too strong 

4:30 - very weepy don’t feel well mentally 

6:00pm - dinner, very shaky 

7:00 pm - epsom salt bath 

8:00-10:00pm - reading, sore legs, restless 

10pm - 12.5mgs Valium bed 

 

2022-02-16 

3:30am wake up anxious 

3:30am -7:00am - in and out of sleep 

7:00am - Tea 

7:30 - start work anxious, so worried about taper, CNS, shaky internally 

9:30 am - very weepy 

10:30 - breakfast, mentally a little better 

12 - lunch, legs ache crying weepy 

1:00pm - internal shakiness, anxious 

2:00pm - 2.5 mgs Valium 

2:30 - shower - weepy filled with shame 

2:30-4:30 - work 

4:30-6 - very sleepy and cold 

6:00pm - dinner WD like feelings 

7:00pm - bath and reading 

8:00-10 - reading 

10pm - 12.5 mgs bed 

 

2022-02-17 

3:50am wake up, toss and turn feelings awful 

4:00am - 7:00am - in and out of sleep 

7am - Tea

7-8am - anxious, upset, feel off. Make kids lunches 

8-9 am - walk to school, shaky 

9-10 - walk to get groceries and walk home 

11am - therapy 

12pm - lunch 

1-2 - house cleaning feeling more normal 

2pm - 2.5 mgs Valium 

2-4pm - cleaning 

4pm - sleepy, bad feelings coming back 

5pm - dinner, shaky, cold, off feeling comes back 

7-8 bath and reading 

8-10 reading not feeling so awful 

10pm - 12.5 mgs Valium and bed 

 

I have now been on the 15mgs of Valium for one month.

 

thnak you 

[Frogie]

@Comfyquilt

 

Some of this could still be the Mirtazapine wd. Unfortunately, it doesn't stop suddenly.

 

I thought you were going to start moving the 2.5 mg by one hour each day until you get it to your 10 pm dose. Then you would be taking it all at night.

 

Can you try moving it by one hour and see how you feel?

 

Keep posting the notes and we can go from there.

 

Hang in there. We will get it figured out.

[Comfyquilt]

@Frogie yes I will keep pushing it back. More notes to come  

[Frogie]

@Comfyquilt

 

That sounds like a great plan😊

[Comfyquilt]

Hi @Frogie - readily bad morning. Ok when I took my V dose. I am wondering here about splitting this into 3 doses so I don’t have these peaks and valleys? Once I take the V I am more rational and feel like I can do a taper etc etc. I think I metabolize it quickly, as I feel it right after I take it. I am now seeing I do need a mid day dose as I don’t think I can’t do a full day without it (ahhh dependency) - could I split this into 3 doses? 2.5 am, 2.5 mid day and 10 at night? I am wondering if my dosing is erratic and that’s what’s causing the issues, as well as fast metabolization. Thank you! 

[Frogie]

@Comfyquilt

 

You could do that. Just move 2.5 mg of your night dose one hour up each day until you get them equally apart from each other.

 

So if you take your nightly dose at 10 pm, then move the morning dose up until you are taking it at 10 am and then move the 2.5 mg from your nightly dose one hour up each day until you get it to 4 pm.

 

Does that make sense?

[Comfyquilt]

@Frogieyes that makes perfect sense. I think I am realizing that I metabolize this quickly. I think I see this in my 4 am wake up. I remember this from my last taper as well, I don’t get the long half life benefit. I will start the movement of doses tomorrow. Thanks 

[Frogie]

@Comfyquilt

 

That sounds great!

 

Let me know how you’re doing.😊

[LotusRising]

@Comfyquilt

 

Hello fellow Canadian!

 

I’m glad you find my story inspiring - it has definitely not, and is still not an easy one, but my husband assures me I am getting better all the time. I am definitely having good moments, so that is a positive for sure. Having to speed up my taper due to adverse reactions is not ideal - I’m glad to see you are responding well to diazepam. Hopefully that means your taper will go smoothly when you feel the time is right  

 

What part of Canada are you in? How old are your kids? Mine are 9 and 11, so can definitely see me struggling. It pains me that they have to see me like this, but they are very empathetic and do seem to understand that I have good days and bad days. 

[Comfyquilt]

Hi @MedRN they are 6 and 13! I am in BC on the furthest tip of the coast. I have loads of mental symptoms but nothing too physical. It’s all so different for everyone!! I am hoping this taper goes nice and smooth!  

[Comfyquilt]

@Frogiei fell asleep naturally last night (was just reading on the couch) and didn’t take my bedtime dose. Had about the best sleep I’ve ever had in months and felt sooooo much better this morning. Woke up happy and went to the garden store. Mood was so improved etc etc. I am seeing here that taking Valium is not happy for my body and I need a plan to get off. I had no shakes when waking and have felt so so much better today. Any advice? 

[Comfyquilt]

Hi @Frogie more notes for you:

 

2022-02-18

4:30 am wake up - toss and turn 

4;30-7:30- toss and turn 

7:30 - tea and start work 

11am - breakfast

12pm - shower - feeling bad crying, worried 

12:30 Lunch 

1-2pm - work, feeling off not myself 

2 pm - 2.5 mgs V 

2-4 pm - work still feel off 

4:30 - grocery shopping 

5:30 - dinner 

5:30-7:30 - reading - low mood 

7-8 - magnesium bath 

8-9 - reading 

9:30 - fell asleep naturally on couch - slept though the night (missed night dose) 

 

2022-02- 19

7:30am - wake up no shaking!!! 
7:45 - tea and feeling quite normal 

8:30 - breakfast 

9-12 - errands - feeling good! 
12:30 - lunch 

1pm - 2.5 mgs V 

1-4 - low mood, feeling bad, reading on couch 

5:30 - dinner, feeling off 

7-8 - magnesium bath 

9pm - 2.5 mgs V 

10 - 10 mgs V bed 

 

2022-02-20 

7:30 am - wake up pretty good sleep 

7:45 - tea and very shaky legs 

8:30 - breakfast 

9-12 - cleaning house and laundry, feeling off unlike myself, foggy head 

12 pm - 2.5 mgs V 

12:15 - lunch 

1:00pm - sleepy reading on couch 

2:00pm - more laundry feeling low 

3-5 - very weepy depressed 

5:30 - dinner 

7:00 - bathe kids - feeling weird and off still 

8:00pm - 2.5 mgs V 

8:00-9:30 - bath and reading - feeling more normal 

10pm - 10 mgs of Valium - bed 

 

 

I really would like to begin tapering Valium as I am not feeling well on it. My body is begging me, I remember this from the last taper. I just had to bite the bullet and begin, and it just got better and better. I feel like with every dose my body is screaming NO. 

[Frogie]

@Comfyquilt

 

I'm just a little nervous about you tapering Valium after just coming off Mirtzapine. 

 

If you really feel like you would like to try, maybe try a 2% taper off the 2.5 mg dose and hold for a while as Valium has a 1/2 life of up to 200 hours, so you won't feel it right away.

 

We can go from there then. But I would keep moving that dose until you get it all at once.

 

Sound reasonable to you?

[Comfyquilt]

@Frogie reasonable yes. I don’t feel much different coming off the mirt. It’s been 22 days now. If anything the upset stomach has passed and I’m eating a little more!! 
 

How would I remove the 2%? I have 5mg tablets but can ask the doctor for 2mg tabs as well.

 

I was trying to get the doses spread out I thought? 10am, 4pm and then 10pm. Just as I metabolize quickly. 
 

which dose should I take the 2% off of? 
 

thank you. 

[Frogie]

@Comfyquilt

 

Do you have a scale?

[Comfyquilt]

@Frogie I do! 

[Frogie]

@Comfyquilt

 

You could crush and weight them, put them in capsules and take it that way.

 

You would weigh 10 of the 5 mg tablets to get an average and then take 2% off that weight.

[Comfyquilt]

@Frogie- thanks! I see my psych tomorrow so am gonna just hold off till then. I want to discuss everything with him. Thank you for the info. 

[Frogie]

@Comfyquilt

 

Just don't let them try and tell you how to taper off because they will take you off way too fast.

 

Just an example: I was on 40 mg Valium and my psychiatrist took me off in 8 weeks!

[Comfyquilt]

@Frogieomg!!! That’s insanity. How you are still standing is a miracle. I would have probably not made it. Last time when I was on 5mgs it took 9 months to taper and he was fine with that time line. That was his taper plan too. He had me

cut 0.5 when I could or 0.25 if it got rocky. I did well with that method. I want to see what he says about this time, as last time it did work it was just my lack of jumping that was an issue as well as my CNS getting rocked from my Covid vaccine (I got pericarditis) - I feel a little stronger today. 
 

I will update after I see him tomorrow! 

[Comfyquilt]

Hi @Frogie - I will begin my Valium taper March 1 (one month since coming off the Mirtazapine) - doctor said it was good to give a month between.

 

he has prescribed compounded liquid which I used with my first taper (with good success). He would like to remove 0.5 mgs in one month. This was the starting spot, he said we can slow down if needed but that 0.5 over the course of a month shouldn’t be too bad. Could you please let me know how to switch over it liquid as I will get it later this week, it is 1mg/1ml. I am also curious about removing the 0.5 - I was going to remove 0.25 every two weeks but maybe this is wrong? I could perhaps do a DLMT? Let me know your thoughts. Thank you 

[Frogie]

@Comfyquilt

 

You want to take 3/4 dose tablet and 1/4 dose liquid for a week

1/2 dose tablet and 1/2 dose liquid for a week

1/4 dose tablet and 3/4 liquid for a week

Then full liquid.

 

I hope .5 mg is not too much. That is a really fast taper. I would try a smaller taper to start out and see how you do.

[Comfyquilt]

@Frogie ohhh I thought that was on slower side when looking at the Ashton Manual? That was his starting spot - which said I could do a full mg in two weeks!!! Yikes 

 

I talked him down from the full 1mg per two weeks as he does use Ashton. Maybe I could do a DLMT? If I have liquid I would be open to that too. I don’t know if that gets weird with Valium due to the long half life? Maybe it builds up. Please let me know your thoughts. I just know I’ve gotta start as I’m getting more shaky everyday and my body is telling me to being this journey (again - I hate even saying that) 

[Frogie]

@Comfyquilt

 

Once you change over to the liquid we can figure out a plan. But we don't suggest more than 10% a month.