Colonial: worsening withdrawal symptoms changing from Paxil CR to liquid suspension

[Nomansland]

Hello @Colonial,

 

i made some posts in the liquid tapering topic about accurat weighting the liquid, if it is mostly made of water.

Might be useful for you and increase accuracy in dosing.

 

Greetings

 

Nomansland

[brassmonkey]

First question: how long have you been using the 48 lines med plus 8 full syringes of water method of making your dose? 

 

Second question: has this method been causing an increase in symptoms?

 

It looks like your signature is way out of date, I'm not finding your current tapering schedule.

 

The mixing error will have caused a reduction of about 12% in your dose. How you've been reacting to that decrease will determine how to proceed. Correcting the strength of the liquid will be very easy, but we need to decide what dose would be the best to use with the corrected liquid.

 

Be sure to @ me, I've been losing track of posts lately because my internet is totally hosed. I just had to hide two duplicates of this post.

Edited March 21, 2021 by brassmonkey

[Colonial]

@brassmonkey

 

Thank you, Good news is I haven't started this method yet, I have just been practicing using the dyed distilled water to see, now that I can see it registering, If I'm getting close to the 400 lines- 8 full syringes of distilled water in the mix, since when I was just using water I couldn't see very well if I was at the correct spot at the top of the syringe or how much of the dead space was or wasn't coming out. Some times it doesn't dispense any distilled water from the dead area, some times it does, but I can compensate for that on the last plunger of water out of the syringe if too much extra has come out.

 

As for my current dose , it hasn't changed in a year.   3/1/20 0.24mgs 

 

I've been attempting to take 0.12 mgs two times a day. This is equal to 6 lines on the syringe, 0.06 ml

So I take 3 lines plus half of the dead space that equals  another 3 lines.

This is the part that's out of my control, how much dead space it will dispense, so to stay even, I make sure I take as close to half as I can "guestimate".

 

My horrible crash was April 6th.  I had made 2 drops in 30 days, 2 lines on Feb. 1/2020 and another line 3/1/2020.  This was the effect for dropping 0.36 mgs down to 0.24mgs in 30 days.

 

To be honest, I've never really recovered. I'm assuming it's because it's impossible to get correct dosages by this method.  Been trying since December to get the compound covered by the insurance and with Covid everything is delayed, and I just keep getting worse. I need to move forward. If after almost 13 months I haven't stabilized, I'm not going to. I might as well push forward.

 

Since I am drawing out 8 dosages of med out all at once, 48 lines, the small dead weight extra coming out is negligible, I can adjust for that by drawing out 47 lines so the little extra that comes out is almost even.

 

The issue is once I add the 8 dosages of 50 lines of water to it to make 8 dosages, not all of those 47 lines of med will be in those 8 syringes.  So dropping from 50 lines to 45 would actually be more that 10%, assuming that I'm able to somehow "stir" each dose to an equal distribution in the little dosing cup.

 

That was the math error, forgetting that not all of the 48 lines of med would end up in the 8 syringes. I will need some extra solution that will have to get thrown out, or else  I won't get a good final "draw" on the 8th dose and it will be filled with air bubbles.

 

Instead of dropping from 50 lines to 45, I could start dropping to only 47 so I'm under the 10%, I just don't know what that equals to in current dosage or if you still thought this was the best way to proceed, since I haven't actually started yet.

 

Thank you.

 

 

 

 

Edited March 21, 2021 by Colonial

[brassmonkey]

Oh good, we are talking theory and not what you are actually using. That makes it a little less urgent and reduces the variables.

 

A couple of more questions: Which medication are we working with?

 

What is the concentration of the original liquid as listed on the bottle?

 

I see your point about wanting to have a little extra so drawing up the dose is easier. It is better to waste a small amount then to get the dose incorrect.

 

The way you are talking about, 48 lines medication and 8 full syringes of water will give plenty of extra for drawing up the dose. But it will make the strength of the dose too small. What you are trying for is a 1:8 dilution to maintain the strength of the dose but some extra volume to allow for easier handling.

 

If you used a full syringe of medication and 8 full syringes of water you would get the proper dilution, 1:8. If you added 1 line of medication and 8 lines of water to this you would keep the same dilution but add 9 lines of volume. You could then draw up you normal doses (46 lines?) and end up wasting the 9 lines of solution and maybe a little bit more. Proper strength, proper amount with just a tiny bit left over to toss out.

 

When I get the original concentration I can figure out the actual dose strength, but I'm pretty sure that the little bit left over in the syringe is not going to contain enough medication to make a difference once you've diluted things 1:8.

 

We will get this all sorted.

[Colonial]

 

@brassmonkey

 

This medication can NOT be refrigerated.

Controlled Room Temperature (68 - 77 degrees F).

 

Paxil Oral Suspension, 10MG / 5ML, 250ML ORAL SUSPENSION (BOTTLE) (apotex.com)

 

"If you used a full syringe of medication and 8 full syringes of water you would get the proper dilution, 1:8. If you added 1 line of medication and 8 lines of water to this you would keep the same dilution but add 9 lines of volume."

 

This makes sense.

We would then just figure how many lines on the syringe of the new solution diluted to 1:8 is equal to my current 0.06ml dose, (6 lines) and then I can make a guestimate of how many lines to drop at each drop.

 

Thank you

[brassmonkey]

Your current dose is 0.12mg

 

According to the bottle the concentration is 10mg/5mL

That would be 2mg/1mL

                         0.2mg / 0.1mL

                         0.02mg/ 0.01mL

0.02mg X 6 = 0.12mg

 

When I get a chance I'll work it through with the 1:8 dilution to make sure it is the same. Then we can calculate the new volume for a reduced dosage.

[Colonial]

@brassmonkey

 

That's correct per dose, I take that 2 times a day for a total of 0.24

 

Each line on the syringe is equal to 0.01ml

 

 0.02mg/ 0.01mL

0.02mg X 6 = 0.12mg per dose.

 

I say correct in theory, because I take 3 lines and about half the dead space,

which in theory would be another 0.03.

 

That looks right up until here, thank you.

[Colonial]

@brassmonkey

 

I can't wait any longer for the State to intervene with the Insurance.

Spring and summer is the only time I can make progress without too much trouble.

I've already put this off a month, I need to make a go of this starting the 11th.

 

 If they ever get around to authorizing it then they can start compounding it at what ever I am at when that time comes for a period to adjust to the change in formulation.

This is what I came up with:

 

"Attempted" current dose: 0.06ml= 0.12mg, 

2 times a day = 0.24mg (6 lines on syringe per dose.)

 

Dilute with 8 parts water = 0.00125ml = 0.0025 mg per line.

(6X8=48) lines on syringe current dose.

 

44 lines= (44 x 0.00125 =  0.055ml) = (44 x 0.0025 = 0.11mg) per dose. 

Equals 0.22 mg day.

 

Attempted 8.33% drop.

 

Since I will still be getting half the dead weight of the syringe (which is equal to about 1.5 lines I will just measure of 43 lines on the syringe, so I will be getting about 44.5 ish lines which is just a tiny bit more than this but close enough to equaling this attempted dose. 

 

What do you think?

Thank you.

[brassmonkey]

Looks good. Try not to stress over the timing, just work with it and let things flow naturally. Best of luck and keep me posted.

[Colonial]

 

@brassmonkey

 

Your requested update...

Dropping today from 0.24mg total to 0.22 daily

Spent 62 days at the 0.24 compound change from liquid to crushed pills since June 28th.

 

Brain zaps started promptly on day 5 for 2 weeks. Had not had them for over a year so it shows how much the brain can still register changes of such types.

 

Started stabilizing from the 14 month autonomic nightmare on day 38, earlier than I thought I would considering I've been on inconsistent dosing for over a year waiting to figure out what my issues were mostly related to. Add waiting for insurance for 7 months in a pandemic added to the nightmare.

 

As I expected, I became worse before stabilizing and on 3 nights straight I thought I was going to die each time, uncontrollable choking, unable in inhale, paralysis, vomiting and falling, tasting colors and smelling numbers in a neurologic-autonomic overload and systemic freeze. Although I know there were also other issues involved in this.

 

And in the end, it is not the insurance who pays for their incompetency, dragging their feet over a mere $45.00 a month but the tax payer who pays the cost for the 2 extra emergency room visits and x-rays and CAT scans and my extended suffering and how it flows out to the community around Me at the doctor, first responder and hospital level.

 

I find it a cruel irony that the very people who's tax dollars are being wasted for my care to be so substandard are then the ones responsible to carry the bag of the fall out each autonomic crash.

 

I surmise while although I am still non functional to any normal standard, I'm at least neurologically stable and able to walk properly and no longer in any immediate danger to death do to falling or seizures of being unable to breath or choking to death.

 

The walking was difficult during the change over, since when I would put my right leg out, I perceived it as my left leg moving and vice versa. Also perceiving my hands reversed made simple tasks like picking up and item difficult and I would often have to grasp something with both hands to be sure.  This seems to have settled for now as well. The dyslexia came back as well as letters on the screen flipping upside down throughout longer words.

 

All for changing formulation while already unstable.

We shall see what this 8.33% reduction brings...

 

Edited August 29, 2021 by Colonial

[Cheeky]

Hi @Colonial, 

Ive just read your thread, you are such a strong lady to endure this and still proceed. Unfortunately I’m unable to give you advice , your always giving that to me but I just wanted to come and support you. You have done such an amazing job in your tapering. You help people when your not feeling good yourself. If there is anything I can do for you , let me know . Hang in there my friend, your one inspiration 🌈

[Colonial]

5 minutes ago, Cheeky said:

I just wanted to come and support you.

 

Thank you so much, I appreciate the thoughts and the time spent to send them, knowing your own state.

Hope your feeling better soon as well!

[Cheeky]

2 minutes ago, Colonial said:

 

Thank you so much, I appreciate the thoughts and the time spent to send them, knowing your own state.

Hope your feeling better soon as well!

You just focus on yourself for now . Huggs

[brassmonkey]

And I thought my walking into door frames was bad. LOL

 

Sounds like it was a rough change over but is starting to level out. So glad you are "functional" at least. I found it necessary to concentrate on every little move for a while there. Had to think through the steps of picking up a pencil, positioning it in my hand and the act or writing. Took a while but it did fade and things got a lot better.

 

The onset of the brain zaps would indicate that there was a mismatch between the strength of the two doses. Have they settled out completely?

[Colonial]

2 minutes ago, brassmonkey said:

The onset of the brain zaps would indicate that there was a mismatch between the strength of the two doses. Have they settled out completely?

 

Door frames..Lol...

 

I thought the brain zaps had by the end of the 3rd week but then they came back a bit last week in the 7th week, so I'm glad I stayed on the change over for a full 2 months. Unfortunately I was already committed to the new dose by then so hopefully the wave, as you say, was a result of a larger reduction than anticipated.  I had attempted to change over to the exact strength I was attempting to take, but that was the problem, what was I actually taking? I didn't want to change both formulation and dose together.

 

So, I guess we'll see what next week brings. 

Thanks

 

 

[Rosetta]

Sending my support, also.  I hope you feel more settled very soon. -Rosetta

[Colonial]

5 hours ago, Rosetta said:

Sending my support, also.  I hope you feel more settled very soon. -Rosetta

 

Thanks so much, very appreciated...

 

[BfromNJ]

 

 I hope you feel better soon and settle more.  It sure is a rough road.  

[Colonial]

29 minutes ago, BfromNJ said:

 

 I hope you feel better soon and settle more.  It sure is a rough road.  

Thanks.

Up all night on 4 hours sleep, it happens with change overs and takes a few weeks to settle

[BfromNJ]

6 minutes ago, Colonial said:

Thanks.

Up all night on 4 hours sleep, it happens with change overs and takes a few weeks to settle

Yeah sleep is so important too.   

[Cheeky]

Hi @Colonial, 

Just want to say Hi and I hope everything settles for you soon. Your a pro at this, hang in there xx

[Colonial]

2 hours ago, Cheeky said:

Your a pro at this, hang in there

 

Oh...

I'm something..

Exactly what the jury is still out but thanks for believing in Me! 😊

[Colonial]

When I changed to the compound I got worse before better.

Took 38 days to stabilize on the 0.24mgs.

 

Dropped after 62 total days to 0.22mgs on 8/29

Symptoms restarted on day 8, Sunday the 5th.

 

Brain zaps and neurological: smelling burnt steak, tasting the number 8 (Which is orange FYI).

Perceiving the wrong leg moving when I try to walk again, numbness below the knees.

 

Tonight difficulty swallowing again and some brain fog.

 

I either didn't wait long enough to stabilize at the change over dose, or

The drop of 8.33% was too large, or a combo of both.

 

Or I've been kindled and sick for so long from April 2021 until June,

With inconsistent liquid dosages and now almost 7 years of nonsense come January.

That I'm just going to be symptomatic each drop of 0.02mg every 2 months.

 

 

[BfromNJ]

9 hours ago, Colonial said:

When I changed to the compound I got worse before better.

Took 38 days to stabilize on the 0.24mgs.

 

Dropped after 62 total days to 0.22mgs on 8/29

Symptoms restarted on day 8, Sunday the 5th.

 

Brain zaps and neurological: smelling burnt steak, tasting the number 8 (Which is orange FYI).

Perceiving the wrong leg moving when I try to walk again, numbness below the knees.

 

Tonight difficulty swallowing again and some brain fog.

 

I either didn't wait long enough to stabilize at the change over dose, or

The drop of 8.33% was too large, or a combo of both.

 

Or I've been kindled and sick for so long from April 2021 until June,

With inconsistent liquid dosages and now almost 7 years of nonsense come January.

That I'm just going to be symptomatic each drop of 0.02mg every 2 months.

 

 

Sorry to hear this!  Can you hold longer than every two months?  

[Colonial]

1 hour ago, BfromNJ said:

Sorry to hear this!  Can you hold longer than every two months?  

 

In theory, for now, yes.

I just have to see how long it takes to stabilize to decide which of the 4 issues it may have been.

 

I'm prepared to accept there may be some symptoms for a week every time I drop regardless how long I wait in-between drops and how much I drop. But it depends how long this wave goes on for me to guesstimate once it's over which of the scenarios it most likely was and plan accordingly.

 

I find when I'm in a wave the best plan is just to take symptoms notes and nothing else until it passes.  No "should I have this, not that", etc.  Doing that IN the wave will make it worse.  Once it's done, then I take the notes and look back and since the wave is over its easy to see patterns and the big picture more clearly, and your less likely to make a mistake in logic if you question each and every symptom as they pop up. 

 

It's easier and less emotionally taxing to just wait until stabilization and then look over the entire2-4 weeks worth of data and extrapolate.  Asking questions every other day about a symptom not only wastes your own time but many times things aren't answerable until enough time goes by and you view patterns.

 

Hope you feel better soon from the accidental Vistiril-Luvox overdose interaction.

Those happened 2 days in a row, it's no wonder you had an uptick, hopefully it will settle in a week or 2.

 

 

 

 

[BfromNJ]

1 hour ago, Colonial said:

 

In theory, for now, yes.

I just have to see how long it takes to stabilize to decide which of the 4 issues it may have been.

 

I'm prepared to accept there may be some symptoms for a week every time I drop regardless how long I wait in-between drops and how much I drop. But it depends how long this wave goes on for me to guesstimate once it's over which of the scenarios it most likely was and plan accordingly.

 

I find when I'm in a wave the best plan is just to take symptoms notes and nothing else until it passes.  No "should I have this, not that", etc.  Doing that IN the wave will make it worse.  Once it's done, then I take the notes and look back and since the wave is over its easy to see patterns and the big picture more clearly, and your less likely to make a mistake in logic if you question each and every symptom as they pop up. 

 

It's easier and less emotionally taxing to just wait until stabilization and then look over the entire2-4 weeks worth of data and extrapolate.  Asking questions every other day about a symptom not only wastes your own time but many times things aren't answerable until enough time goes by and you view patterns.

 

Hope you feel better soon from the accidental Vistiril-Luvox overdose interaction.

Those happened 2 days in a row, it's no wonder you had an uptick, hopefully it will settle in a week or 2.

 

 

 

 

Yes I see what you mean.  My therapist says I cannot do that old should have done this, should not have done that.   Doesn't help.   I'm getting into CBT therapy and will be doing some IOP for a while.   I hope it helps.  I do find it triggering to even note symptoms I feel I obsess.  But I know its necessary.    I wish you the best.   Hope you feel better and get to a window.   

[Cheeky]

@Colonial I really hope you come into a beautiful window. Your so close to the end and you have amazing strength. Hang in there my friend 🌈

[Colonial]

3 hours ago, Cheeky said:

@Colonial I really hope you come into a beautiful window. Your so close to the end and you have amazing strength. Hang in there my friend 🌈

 

That's so much, and for You as well!

 

[Colonial]

 

6 Years ago this month I was pathologically thirsty and drinking water to an incredible degree due to a massive drop in Wellbutrin.

 

After a few weeks and during this time I had learned about WD raising your cortisol and told my doctor I wanted to run one of the 24 hour urine tests. He humored Me since He didn't know what He was dealing with.

 

I was drinking so much that in 24 hours I was actually into a 3rd container.

The normal range was 3-40.

I was 117.

 

 

Later in the month when the thirst had stopped He wanted to run it again.

This was only 10 days later on the draw date.

I had only half as much urine and the number was still elevated but down to 58.

 

It's no wonder we have some of the issues we do.

 

 

 

 

 

Edited October 7, 2021 by Colonial

[Cheeky]

These drugs play havoc on all our body. 
How have you been going since you your last drop? Have you stabilised yet?

[Altostrata]

Oh, I am so sorry, @Colonial Going off Paxil is so very difficult. Hang in there.

[Colonial]

On 10/7/2021 at 4:02 PM, Cheeky said:

How have you been going since you your last drop?

 

I had a bad week last week, mostly due to other physical issues.

But my last drop was end of August, about 5 weeks earlier, so it may have made it worse.

 

When I changed over to the compound from the liquid end of June, July was truly horrid.

I'm pretty sure I almost died 3 nights straight, unable to inhale, exhale, swallow, paralysis, etc.

 

But this second cycle on the compound wasnt as bad as the first, so hopefully dropping 0..02 every 60 days will work out.

 

@Altostrata  Thanks.

 

[Carmie]

20 hours ago, Colonial said:

 

I had a bad week last week, mostly due to other physical issues.

But my last drop was end of August, about 5 weeks earlier, so it may have made it worse.

 

When I changed over to the compound from the liquid end of June, July was truly horrid.

I'm pretty sure I almost died 3 nights straight, unable to inhale, exhale, swallow, paralysis, etc.

 

But this second cycle on the compound wasnt as bad as the first, so hopefully dropping 0..02 every 60 days will work out.

 

@Altostrata  Thanks.

 

Hi there Colonial, 

 

I hope this week is better for you. 
 

I had problems too when I changed to compounding, so I went back again to crushing my tablet after three months or so going through waves. I water titrate my meds. I didn’t know anything about crossovers at the time and just went straight to water titrating the tablets to water titrating the compounded formula. 
 

The reason I went to the compounded formula is that I could get it made in smaller doses. I can do that anyway with crushing my 25mg tablet, I just add more water. Brassmonkey told me that compounded formulas aren’t always as accurate as the original tablet and it’s usually best to stay with the original tablet, so that is what I did. Now I don’t have to worry if every compounded formula is a little different to the last. That being said, there are many that have done okay on compounded formulas. 
 

Anyway, when I went back from the compounding formula to my original tablet I did a crossover, and that worked so well. I didn’t end up with months of severe waves. 
 

Hope you have a happy day☀️☀️

[Colonial]

19 minutes ago, Carmie said:

. Brassmonkey told me that compounded formulas aren’t always as accurate as the original tablet and it’s usually best to stay with the original tablet, so that is what I did. Now I don’t have to worry if every compounded formula is a little different to the last. That being said, there are many that have done okay on compounded formulas. 

 

Oh, good... More reason for Me to worry.😐

 

Unfortunately I didn't have an option for pills.

My only option was either diluting my own liquid or changing over to the compound.

 

I think the reason I did so poorly to begin was the shock of the formulary change, as I had that as well years ago changing from the controlled release pills to generic immediate release liquid.

 

That and that we were "guess-timating" what dose I was getting everyday with the liquid to begin with.

This round was not nearly as bad, so hopefully I will smooth out.

 

I have to assume their compound has to be closer than me diluting liquid, or atleast not any worse.

Best I can hope for at this point.

Edited October 14, 2021 by Colonial

[Carmie]

Yes, the formula change could definitely have affected you Colonial, 

 

Did you do a crossover or did you just swap straight to the next formula? I did that before I knew about doing crossovers.

 

I went from the same amount of mgs that I was taking with my water titrating to the compounded tablets and went through waves for months. I had to stay at that dose until my brain settled again. It could have been the formula change and/or the compounding tablets being not one hundred percent the same dosage. 

 

As I mentioned, after that I went back to water titrating my original tablet, and because I was doing the crossover it went fairly well. So, the one thing I’ve really learnt the hard way is that if one is going to change to another formula one must do a crossover.

 

Why did you have to “ guess-timate “ what dosage you were getting with the liquid? I think you made up a new word😂 I like it!!  I’m guessing your dosage is too small and you would have had to add a lot more water. 

 

Take care🤗

[Colonial]

On 10/14/2021 at 2:50 AM, Carmie said:

Did you do a crossover or did you just swap straight to the next formula? I did that before I knew about doing crossovers.

 

My apologies, I just saw your reply now.

 

I had to switch straight from the liquid to the compound since they were being compounded at the "guesstimate" amount I was trying to take, 0.12mgs each. However since the "dead space" area of the syringe would dispense differing amounts from dose to dose even though it was not supposed to, it was never the same as the dead space equaled 3 lines in the syringe, hence the difficulty of determining the dosage received.