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

[Colonial]

 

Hi Carmie,

 

I'm doing ok.  I waited it out a few more days and started to improve around the 21st of January

I waited another 2 full months before dropping again 3/24/19. I only dropped 2 small lines this time instead of 5.

So far, so good, but if it hits me again at the 2 week mark I will up dose and not try to tough it out again.

That was a rough 5 weeks altogether and gave me a "triple ear infection"

I need to go update that drop now, I forgot to post it!

[Carmie]

Hi Colonial, 

 

I’m sorry you got an ear infection. What does “triple ear infection” mean?

 

You’ve done really well getting to such a low dose now. I’ve still got many, many years of tapering to go to get off the Seroquel.I’m down to 7.25mg, and I definitely won’t be jumping off until I’m down to 0.0something. My brain has been so sensitised with all the meds I’ve been put on and off. 

 

How are your ears now?

 

Take care, sending hugs💚

[Colonial]

 

Hi Carmie!

 

You have both an inner and an outer ear and either one or both of them can get infected.

In the one ear I just had the outer ear but the other was infected both inner and outer.

Outer ear is generally what is referred to as swimmer ear.

However it being February, I certainly wasn't swimming anywhere, and I always use cotton when I shower...

So to come down with both outer ears and one inner ear infected at the same time was suspicious...

And then I remembered one other time getting a bad ear infection about 6-7 weeks after a drop that gave me a bad wave...

So no more riding a bad wave out if this is going to be what always happens at the end.

 

This is day 13 since this drop, some flu like symptoms and electric head shocks but nothing unusual yet.

Last drop the severe symptoms started on day 14 so we'll just see how it goes...

Hopefully the newer lower drop amount and the fact I waited 3 months will be ok...

This drop represented a decrease of 0.16mg, from 0.80mg down to 0.64mg.

Which is A drop of 2 small lines on the 1 ML syringe twice a day.

10 lines down to 8.

20% but hopefully still small enough to fly me under the radar this time.

If not, I can uptick it the 1 line on the syringe.

 

I had been coasting along at dropping 5 small lines (or 1/10th of a syringe) twice a day up until the last drop.

Which is why my drop rate was steady at 0.4mgs per drop since I was dropping it 0.1 ML TWICE a day...

So I had to multiply by 4 to get the MG total.

As you can see from my signature line, that worked pretty well for the 2 years!

 

 12/3/15 Drop from 8mg to 7.6 (24 days to) 12/27/15 7.2mgs  8/4/16 6.8mgs,  11/1/16 6.4mgs, 2/5/17 6 mgs  4/3/17 5.6mgs, 4/24/17 5.2mg, 6/13/17 4.8mgs, 9/20/17 4.4mgS, 11/23/17 4 mgs, 1/1/18 3.6 mgs, 2/15/18 3.2 mgs. 4/13/18 2.8mgs, 5/11/18 2.4mgs, 6/10/18 2.0 mgs, 8/4/18 1.6mgs,  9/27/18 1.2mgs, 12/24/18 0.8mg, 3/24/19 0.64 mg

 

[Colonial]

 

This is an image of the syringe I'm using, in case anyone is having trouble understanding the:  " 4 smaller lines in between 1 larger line":

So for the 2 years, I was dropping 1 larger deeper line that represented, say, either;  0.7, down to 0.6, etc..., twice a day.

But you can see it does have the 4 smaller lines in between those parameters.

We were fine at that amount per drop until the 12/24/18 drop,  when I dropped from the .3 down to the .2, when I had the episode starting 2 weeks later on 1/06/19.

 

So now I dropped it just 2 of the smaller lines down from the 0.2 marker.

If it gets to the point I need to make smaller drops that 1 line at a time they do make BOTH 0.5 and 0.3 syringes as well....

 

   

[ChessieCat]

4 minutes ago, ChessieCat said:

 

I spoke to my compounding pharmacist today and asked about the dispose after opening date of liquid drugs.  He told me that generally a liquid needs to be disposed of 1 month after opening, unless is it alcohol based.  The disposal after opening date for alcohol based liquid drugs is 6 months.

 

I asked him specifically if the efficacy of the drug reduces and he said yes. 

 

I also asked specifically about brand name Paxil liquid and he said the same thing applies.



 

[Colonial]

 

Hi Chessie! 😉

 

Yeah, I guess your formulations are different than what we have here in the States...

Both brand name or generic..

I do remember the picture on the generic box showing it needed to be disposed of after 30 days of opening...

 

Luckily the way ours is manufactured Here it's still ok long after 30 days...

The only time I have problems is after dosage drops that are too large or too soon...

I'm finishing up a bottle I sat aside and forgot about that I got 18 months ago and it's still fine...

 

Like I had written in the other thread, IF I was no good after 30 days there would be both legal disclaimers like You have on Yours...

BOTH the written warning on the outside of the box that it was only good for 30 days and also in the legal insert to the pharmacy...

The Pharmacy couldn't legally dispense it to me if they had already opened it more than 30 days ago and it was going bad...

 

I wonder what people do with the liquid that they are "throwing out"?

They make a big thing about NOT flushing your meds ( in any form, pill or liquid ), down the toilets here, since it all ends back in the water supply...

 

 

[Colonial]

Bad anxiety the past 21 days...

 

With the bad nightmares and early morning cortisol jolts...

Wondering if it's related to the about "10 month" wall after last dose of a taper...

Just read about that in one of Brassmonkey's 'How long will this last" paragraph's today....

My Wellbutrin...LAST DOSE: 6/11/18:  3 YEARS, 2 MONTHS, 27 DAYS...

So that would be about 11 months...

 

Interesting..

 

 

[Colonial]

 

I find -surmise, with these meds, there's a percentage your body can tolerate per drop, another tolerance level your body can tolerate in any 3 months, 6 months and 1 year period.  Eventually, you just have to slow down and not make any drops for a rest period.  I do it in the Autumn since its the time of year You brain is compromised to begin with.  I make no med changes for 3 months, and that allows everything to settle and keeps my over all numbers, percentage wise, lower towards my yearly total.  I find I make better "progress", in the sense of less symptoms, from March to August of the years.

 

That being said, I don't know if I accidentally screwed myself with too big a % drop in a short period, or if I'm now dealing with Perimenopausal symptoms exacerbating and-or bringing back withdrawal symptoms, like what happens to women who, even if not currently making cuts, can have their symptoms come back during PMS or, for some of us like Me, about 5 days AFTER the beginning after the cycle....

 

Suffice it to say, I think Menopausal- Hormonal fluxes are a HUGE " undiagnosed -under  investigated- thought about-" concern in determining what symptoms are from what issue, and how that should affect a taper......

 

So let's recap and think this through...

 

My last post was the bad anxiety and jolts of cortisol waking me up early started beginning of May..

I had been on 0.8 mg from 12/24/18 for 3 months until 3/24/19, when I dropped to 0.64...

Now I suppose in theory, that even after a full 3 months at 0.8 that would be a high enough percentage drop of 20%  to kick me off with the cortisol...

Especially since I had the other bad event in January after dropping... 33%...

But other than that not much else...

So, taking that into consideration that maybe 20% was still too large, I  then  started making smaller cuts, only 1 line on the syringe equaling 0.08 mgs.  That worked out to be:

4/22/19  down to 0.56 mg, 12.5%

5/24/19  down to 0.48 mg, 14.3 %

7/7/19    down to 0.40 mg, 16.7 %

8/4/19    down to 0.32 mg,  20%

 

I noticed somewhere around July the anxiety getting much worse in the afternoons, but It was coinciding with what I "think" are Peri menopausal symptoms, constantly cold all the time, and then some hot flashes ( more on that to come).

So, it's been since 8/4 since I has a drop, and the anxiety has been bad and aggravated in the afternoon by caffeine and eating carbs.  Again, I've been better, but I've also been worse.

 

Fast forward to Sunday afternoon, feeling very anxious and shaky, teeth shattering cold, numb, etc...

Went to bed, slept 3.5 hours, woke up in a jolt of panic, took one .25mg xanax, fell back to sleep about 90 minutes later...

Slept about 3 more hours and Woke up about 9:45 am in the worst dissociative panic attack I've had in quite sometime...

 

It was so bad I was vomiting in the toilet and I'm looking at my 2 hands, and it looked like they were switched, that my right hand was on my left arm and vice versa...

And then... I started smelling colors and tasting numbers again... And I realized this was no "Normal" panic attack, it's the kind I never had "Until" I started the drug withdrawals...

Yes, I remember now, every "Neurological Autumn" the past 3 years (August to October)- the colors and numbers bit for me, and smelling things that aren't there... thank you Wellbutrin and Glaxo Smith Kline...)

So...We are obviously off to the doctor...

But before we get to the doctors visit, let Me fill in about the Menopause- issues- connection.

 

End Part 1

 

Part 2: Peri Menopause Muddies the water

 

Now, up until then, I thought a lot of it had to do with the normal Peri menapause symptoms I've been having since about December...

 

And in retrospect, how much of my withdrawal was "complicated" by being peri menopausal now since October of 2016, who's to guess?

I suppose that's why we keep these logs to go back after the fact and piece things together.

My last normal cycle was age 47 early Sept 2016, then had one in December 2016, March 2017, April 2017 June 2017, July 2017,. So that was 6 in 12 months from Sept of 2016 to August 2017.

 

From Sept 2017 until November of 2018,  (age 48-49), I had 5 cycles in those 15 months:

Oct of 2017, and Jan, May August and November of 2018.

And that was the last, 9 months ago, November 25th. Age 49.  I turned 50 in the late Winter of this year.

 

Now I really can't say anything definitive during that time pops out at Me as Hormonal related, except the problem is MANY symptoms are identical to withdrawal:

Difficulty concentrating and thinking,  insomnia, INCREASED ANXIETY, for instance, all menopausal symptoms, so who's to say when I hit a bump in the road what was what, or if I only had that bump because BOTH Were present?

 

Looking back, I can say I started having what I would define as Menopause induced issues in December 2018, right after my last cycle:

I have had the "chills" most of the past 9 months, and that is extremely unusual for Me, never been a usual withdrawal symptom. I remember asking myself why am I so cold this winter?

I have hardly had the air conditioner on this summer, normally if it hits 72 I have it on....

(As I type, it's 76 degrees in this bedroom in August at 2:11 pm, and I'm under a blanket...So something is up, for about 9 months straight, so...)

 

It was also about that time I started having skin issues, strange rashes on and of, which, not a usual symptom, can happen.

The Insomnia anxiety uptick started in tandem in May, 5 months AFTER the temperature deregulation issue began in December.

In July we added the difficulty thinking and making complex decisions, like following complex instructions to put something together, and more chronic fatigue, 2 more symptoms that could be under either camp.

BUT, I do have to say, that there is just something a bit DIFFERENT on how the anxiety, difficulty thinking and fatigue has "Manifested" itself in the past few months as it's presented itself after the temperature deregulation started.

While I have had them before in withdrawal, their just, NOT quite the same as they were when they were definitively withdrawal related. 

 

My theory is, if they are hormonal induced, they manifest in a slightly different manner than if they were withdrawal induced.

And if your Withdrawing at the same time?  Who knows how they will manifest.

In the beginning of this month, I also started with the "Hot flashes".   Again, not ever a symptom for Me before, and classic Menopause symptom of temperature deregulation.

In the past week before yesterdays "Episode", I was going from hot to cold and back again, sometimes withing a mere FIVE MINUTES...

End Part 2...

 

Part 3: Off to the Doctor...

 

(Let's start off by saying it's now only 2:33pm, a mere 22 minutes since I typed I was freezing to death under the blanket, and now I'm sweating to death looking for the air remote... (NOT a withdrawal symptom..)

 

Now, I know sticking up for the Doctors is NOT popular around here...

I know we have an entire thread dedicated to "The Stupidest thing a Doctor has ever said", and I surmise what He said yesterday is probably going to be "cut and pasted" by someone and end up on it...

But I would just like to remind everyone who ends up at the doctors for a med induced psych crisis, that your doctor, at that point...

NEITHER a trained Emergency room doctor OR A Psychologist, is now, presented with what looks like a "psych emergency" out of no where...

He is now in JUST AS MUCH CRISIS AS YOU ARE...

And is just as prone with His adrenaline up to say something that in retrospect, sounds a bit off or stupid....

It's the nature of what it means for ANY of us to be in crisis at a moments notice, and Doctors aren't exempt..

 

Now, that is NOT an excuse for them to not know more about these drugs and their effects and the entire withdrawal "MYTHOLOGY" as it's presented to them....

Many of then understand it IS med related and not in your head, they just honestly have NO IDEA any more than the janitor what to do about it....

And now He's gone from a normal day...

To a woman crying, (wrapped up under a blanket in a 75 degree office in August) not sleeping, panic attacks, disassociating body parts, smelling colors and tasting numbers...

 

YOU HAVE TO UNDERSTAND that at SOME POINT in the next 30 minutes, now that His "Emergency Protocol Checklist" is going off in His head...

And His adrenaline is now up in a crisis, with all the things He has to decipher, like:

"Is She safe to walk out of this office?  If I change Her meds and let Her walk out will either she commit suicide or kill somebody else?  Ect..

YOU HAVE TO EXPECT that at some point in the next adrenaline charged 30 minutes, He's PROBABLY going to say...SOMETHING....

That in retrospect, might seem like the Stupidest Idea a man with a medical licensee could think of...

 

But You have to realize like anyone else, at this point, He's going to be doing what any of us do in a crisis:

"We think out loud" before we actually "reflect" on whether what we're thinking is actually a smart thing to say"...

But because He's the Doctor, He's the one more liable to get slammed down for it than us...

 

Now, to some extent, YES... You as the doctor really do have to watch what you say before you think it out loud....

But to me?  That's a sign that the medical establishment is not properly TRAINING general physicians in how to act in a moments notice in what "appears" to be a med induced psych crisis"...

In the art of being careful of thinking about what you actually "say" before it comes out of Your mouth...

 

But I digress...

(My God, it's 2:59 pm and its FREEZING in here! Who in God's name has the air conditioning on?  Was what Me?  Where is my blanket?)...

That's literally how fast I go from hot to cold.... 20-30 minutes...again... never a withdrawal symptom that I remember...

 

Ok, so, fast forward through I tell Him a condensed version of all this...

He says, "is it possible your anxiety is getting worse because your coming off the Paxil? I keep telling you I think this is related".

Now, that is a very plausible thing to say, because Paxil IS used for General Anxiety Disorder, and a very real question is:  "is this withdrawal, or the Original condition coming back"?

 

So, in My semi delirious state, I THINK I mentioned that I don't think it's from coming OFF the Paxil, since anything I've ever read about Paxil indicates you need AT LEAST 10 mgs to do any good for anxiety...

So, let's say, for arguments sake, that "maybe" it still did "some" good at 6 mgs a day, I haven't been on 6 mgs since APRIL OF 2017.... A FULL 2 YEARS AND 4 MONTHS AGO....

And if it was an "original condition" re emerging... I think it would have happened long before now that I'm in the 3rd year of peri Menopause...

 

So... I let that sink in... And it was the next question out of His mouth... that's going to end Him up on that "Stupidest quote" page...

He's says...(God Love Him...)

" WELL WHAT DO YOU THINK ABOUT JUST STOPPING IT COLD TURKEY ALL TOGETHER?"

 

And it just... It literally just took my breath away....

You know that moment you must be sure your on Candid Camera or something?

And I looked at Him, and I did NOT say anything, but all I could think was:

 "Are you the same man who has seem me suffer at almost EVER MED DROP" for the past 5 years and knows what that can do to drop too much too soon"?

And not knowing at this point of crisis whether to laugh, cry, or smack Him, I calmly replied:

 "I don't see in what potential universe that could possibly be considered a wise decision.  Would You like to explain your Logic?"

 

Now, as He did, I can see where He was going. He was viewing, considering, conjecturing, that the Paxil was a possible "Poison" in my system that I was "reacting to", and the sooner it's out of my system the better.!

WELL, LADIES AND GENTLEMEN, NOW WE'RE GETTING SOMEWHERE!

 

Only taken Me almost 6 FEW YEARS of withdrawal misery to get Him to ADMIT....

THAT PAXIL......... IS A POISON!

(Glory Hallelujah! Baby steps, people... Baby steps...)

 

Ok, so, all is forgiven at this point, because now at least  I can see what he's "conjecturing",...

Is it better just to stop it cold turkey and deal with whatever happens and at least get the TOXIN out of my system completely... or continue on with this seemingly endless cycle of med cuts.?

Now, granted, He should have "explained" this before just going off and saying something so ridiculous and disheartening... but...

Considering everything I said above about the stress they are under at a moments notice, I at least understand how it happened...

 

(My God, it's 3;24 PM, It's hot as hell in here!  Who turned the air off?  Was that Me? At 2:59pm?  My God, where is that remote...I'm gonna pass out from the heat... one moment...)

 

Ok, so... I respond, and I think quite logically, that "If" this was some sort of allergic reaction to the 'POISON OF PAXIL" (HIS WORDS not mine...),

That I think I would have manifested in the 25 years I was on it... Not during the withdrawal phase which is known to be notorious.

And a shout out to Our own "BrassMonkey" Here, as I told Him that one of the "Paxil Withdrawal Experts" on the website who has hundreds if not thousands of hours at this point dealing with Paxil withdrawal cases...

Has remarked He has seen an increase in nasty symptoms BELOW (I think) the 1.5 mg mark...

If my 1.5 is wrong please someone correct Me, but I explained to Him that this isn't uncommon, and the last few milligrams can be the "hardest" to ween out of the brain, symptom wise...

 

So, long story short, we temporarily increased the xanax and lowered the muscle relaxant, to kind of offset not having too many system depressants in the system at once, and stick with which is more necessary at this moment..

I did eventually fall asleep last night for 3 hours, than jolted up again, took a "double" xanax (.5mg) and fell back to sleep about an hour later...

Only to be woken up about 2.5 hours later by the dog upstairs barking at the skateboarder...

This is my main problem, I can't fall asleep early enough, so that after I'm jolted up for 2 hours before I can get back to sleep, I'm able to sleep as long as my body "would" let me if I wasn't being jolted awake in a panic from neighborhood noise.

 

End Part 3

 

Part 4: DES Babies and Wrap up...

 

So today has not been as bad as yesterday...(hold on one moment I need my blanket, It's freezing in here...)

Still, obviously, and, a bit humorously, (hopefully) dealing with major temp deregulation and flu like symptoms, difficulty thinking, but the anxiety isn't so bad today, that's a little mercy...

Now, looking over my chart today, i did notice that while I did decrease the AMOUNT of drop, I did increase how often I was dropping, to the extent that the "cumulative total" was....

Accidentally, but probably excessive

I think I dropped 50% of my "current dose" in, what?  Only 4 months and 11 days?...

3/24/19 0.64 mg,    4/22/19 0.56 mg,     5/24/19 0.48 mg,    7/7/19 0.40 mgs,   8/4/19 0.32mgs,

 

In retrospect, that was probably insane...

But not having symptoms after the 20% drop, I thought the smaller drops of 12.5% and 14.30% were ok....

And they probably WOULD have been... If I had still been leaving 2 months in between drops like I had been instead of only 1...

 

This is how I came up with the original quote today at the beginning of this thesis....

I really think there's a cumulative amount Your body can drop at any stage along the way, per drop, 3 months, 6 months, one year...

And regardless what You may be able to tolerate in any one drop, or any one 3 month period...eventually, you need to slow down to a "year End" percentage bench mark...

 

I think if You look at all those who have finally finished major tapers of these harder drugs...

That no matter how fast or furious they started out of the gate...

At the end...

I wouldn't be surprised if they all fall within the 5 to 6 year mark...

 

So how much of this latest episode is withdrawal on its own or how much did the Menopause symptoms contribute to yesterday morning's festivities?

I have no idea...

But I also have to add that I was a DES Baby, which accounts for my infertility and my Stage 4 Thyroid Cancer at such an early age...

How much the DES debacle does or doesn't affect menopause issues per say seems to be a hard thing to find out about...

And what effect that might also play into withdrawal, having been subjected to large amounts of hormones "In Utero", who can say?

 

With DES now a memory, I'm sure most of the Medical world might not consider it worth looking into....

And while I'm sure the percentage of female DES Babies who are in "active" withdrawal during peri menopause and menopause proper may seem small to the over all percentage of cases here...

We do have to remember that the MALE DES Babies are also an entirely large and usually forgotten percentage of Our population who end up on these psych drugs...

And eventually, in withdrawal...

 

And in reality, whether male or female, even if your NOT in peri menopause having the hormonal flux exacerbate things, as a female trying to withdraw...

What damage did being subjected to these hormones do in utero to our forming brains and what links to withdrawal complications are there, at any age?

Over all, I think it's a discussion worth having...

 

Ok, I need to go, It's freezing in here..

And I need to go find a better blanket...

 

 

 

 

[Colonial]

 

Copied from the: "When to "jump off" thread:

 

Posted 4 hours ago

 

From Brass Monkey's Paper, Part 2:

 

"...Part of why it takes so long is simple mathematics. When you add it up a 10% taper every 6 weeks starting at 40mg and ending at the currently accepted jumping off point of 0.016mgai will take about five and a half years...."

 

2 quick questions, does anyone know:

 

1.Is this 0.016mgai jumping off point for Paxil?  And:

 

2. How do I convert what the "mgai" is equal to ml in the liquid solution?

 

I "think" He was on Powder at that point, and I'm trying to figure out how to convert what that would equal to in mgs.

 

I'm currently 3 weeks into a decrease that has me at 0.16 mgs, or 0.08 mill...

I am using a 0.5 ml syringe, and that still constitutes the bottom 4 lines on the syringe...

But it's difficult to get an exact dosage with this syringe, as it's the same color as the liquid,orange.  (Not helpful)

Just trying to get an understanding where that dose is in relation to 0.016mgai.

Would it be half of what I'm taking right now?

 

Thank You!

 

 

[Cocopuffz17]

Hello, how has the last little bit been ? You have gone the long route and I went the psychiatrist route, which was very challenging for me. You are a strong individual to go through this! 

[Colonial]

Cocoa Puffs, good to see you! 😎

 

It's been a rough time since last May, hard to know if it's the last 2 mgs of Paxil, or Menopause, or 5 continuous years now of 2 drug withdrawals, or...what...

So, I just go by comparing where I was this time last year, whenever that was.  Mid Feb last year I was at 0.8mg,, and now I'm down to 0.16.  That's down about 85%.

Just keep plugging along.  In truth?  My over all health has been shattered by the withdrawals.  Yes, I'm 5 years older, but I'm pretty much bedridden 14-16 hours a day.

Sure, I'm withdrawing, but would I do it again knowing what it's cost Me?  Probably not, but... Too late now to turn back time.  Just trying to figure out what the "jump off" line could-should be.

Although it won't be the happy date I thought it would be.  It's all just cost me too much and ruined whatever "quality" of live I had before the WD....

 

How are you doing?  Good to see you hopping around. 💝

 

 

 

[Colonial]

 

Just Posting Brass Monkey's reply from the other thread here, so all My info is in one spot...

 

Posted 20 hours ago

0.016 mgai is a generic jumping off point that is the target for most tapers.  Because of the number of drugs and the variety of relative strengths we work with it is practically impossible to work out an exact jump point for each one. It makes it so that some people come off at a slightly stronger dose than someone on a different drug, but by the time a dose gets that small, if the taper has been managed properly, the jump point is really a non event. For most people it is the smallest amount that is practical for them to work with.

 

Yes, I used powder for my entire taper and actually went to a smaller dose then this.  But I have plenty of practice working with the equipment and the small amounts necessary. For people using liquids, by working with the dilution ratio they can refine their dose to an incredibly tiny amount.

 

You are already converting mgai into mL. Mgai stands for Milligrams Active Ingredient.  This is the strength of the dose. Above you noted that your dose is  "0.16 mgs, or 0.08 mill. "  The 0.16mgs being the strength of the dose and the 0.08mL being the volume.  When working with weights we like to refer to the strength of the dose as mgai.  This differentiates fit from the weight of the dose which is referred to as mgpw, Milligrams Pill Weight.

 

Your liquid has an AIC Active Ingredient Concentration of 2/1 meaning you get 2mgai for every 1mL of liquid. It's a simple ratio that can be used to calculate the strength for any given volume of that liquid. Following through with the calculation if the dose has a strength of 0.016mgai then it would have a volume of 0.008mL.  Which would be one maybe two drops...."

 

[Colonial]

 

So the lowest dose I could conceivably measure on this 0.5 syringe would be 1 line. 

Since I am currently at 4, which represents 0.16 mgs...

1 line would then equal: 0.04 mgs of mgai of Paxil.

 

They do have 0.3 ml syringes available...

So 1 line of liquid of that would be 60% of the 0.5 ml syringe...

Making 1 line of the 0.3 syringe equal to 0.024mgs.

 

I hope I don't have to go that far along.  The 4 lines of the 0.5 ml I'm currently using barely represents 2 drops of liquid as it is...

Each line is only what I would consider half a drop.

It's crazy how concentrated this stuff is.

 

I was going to wait 2 full months and drop to 0.08 mgs on April Fools day, ( 2 lines)...

And jump off from there June 1st...

But if I'm trying to get as close to 0.016 mgai as possible...

I suppose I could drop it 1 line to 0.04 for 6 weeks until mid July...

I just don't want to be waiting too close to Autumn to "Jump", I don't do well with Autumn cuts.

I suppose instead of waiting 2 full months in between drops I could do 7 weeks and then add that 3rd dosage of 0.04 in...

 

 

[Colonial]

It's Neurological spring for Me, the time of year I make the best progress with my WD...

Usually I notice feeling better around March 10th, but I noticed "feeling" better yesterday.

 

I think, though, I will cut my dose change in half of what I was cutting, and see if I can make more dose changes than every 2 to 3 months.

My drop on 11/4/19 was 25% of my dose and I was ok and held for 3 months.

My drop on 2/1/20 was the same 0.08 mgs but that was now 33% of my dose.

I think I will try only dropping 0.04 mgs tomorrow, which is the smallest dose change I can make on this 0.5ml syringe and see how I do...

And thus how long I need to hold before dropping another 0.04mgs.

 

[Cocopuffz17]

1 hour ago, Colonial said:

It's Neurological spring for Me, the time of year I make the best progress with my WD...

Usually I notice feeling better around March 10th, but I noticed "feeling" better yesterday

 

 

 

I am curious if you get more sun exposure where you live at this time after winter. Thanks. 

[Colonial]

 

@Cocopuffz17Oh, I was just looking for you! Lol 😎

You finished a Paxil taper, correct?  If so, what dose did you "jump off" from?

 

This is the earliest I've "experienced" my neurological system charting to change in the "Spring", it usually happens around 3/10.

In the "Autumn" it usually starts again mid august.

 

Meaning its the 6 weeks about that I have petit mal seizures, tasting colors and smelling numbers, issues like that.

It "hits" Me earlier that "feeling better" in spring or "worse" in autumn hits other people, because now my brain is coming "out" of hybernation from the winter...

And then starts to go back into hybernation, to start, end of august.

 

I suspect all of Our brains start around this time, so that the reason a person all of a sudden feels "better" in the end of april-beginning of May...

Is because their brains have been making tiny changes weeks and months prior to when they actually "feel" better.

I think the same is true in autumn, all of Our brains begin to hybernate months before people notice S.A.D.

 

But, generally NO, I dont get more sun.

 

 

[Cocopuffz17]

@Colonial I jumped off at 2.5 mg. My taper was disaster guided by a psychiatrist. It whooped my butt. I still get PAWS, but it is soooo much better than it used to be. 
 

I personally feel way better with sun exposure. Vitamin D is key in healing the gut. 

[Colonial]

@Armorall  I tried to answer you by message, but it says your not "allowed" to receive them so i will paste it here.

I don't feel comfortable "hijacking" other peoples threads with questions that don't really relate to their issue.

 

 

 @Colonial thanks for the explanation. I thought that the reason for caution against CT was the result of a longer withdrawal with more extreme symptoms- not from "damage" but as a reaction to sudden discontinuation. ( See the plant and trellis analogy- trellis is gone but plant is not damaged, just needs a longer time to franticallyrebuild ) but whatever. Maybe the difference in interpretation is pointless...."

 

It may just be an issue of language, but injury, damage, which ever word You use, all are what cause the symptoms.

But the damage is done by "taking" the drugs. That remodels your brain. 

The WD is just when the realization of the damage to Your brain "manifests" in Your central nervous system, since once You stop taking the med, the damage done to Your brain is now what brings the symptoms out through the nervous system.

But the CT does do more damage to the CNS, Which is damaged by not allowing enough time for the damage to the brain to heal by giving the brain enough time to fix itself.

So, the brain damage leads to the damage to Your CNS, if you don't taper properly.

 

That was my point that being "symptom free" doesn't mean healing per se, if a "Non WD event" like antibiotics, alcohol or a period of stress can put you in a relapse.

If something can put You in a relapse, then Your CNS still wasn't fully "healed", regardless of whether You A-Symptomatic or not.

 

Here are some quotes,   Hope that helps.

 

Alto: Posted 4 hours ago

Your nervous system is not made of rubber. If you injure your knee, it will take some time to heal up. If you injure it over and over, it will take longer to heal. Same with your nervous system, except it takes much longer to heal than a knee, it's more complicated.

 

Cold turkey is a much more serious injury to your nervous system than a bruise is to your knee.

Reinstatement is a way to "do over" the part of your taper you didn't do the first time around. It can relieve the withdrawal symptoms, sometimes completely.

 

Otherwise, we don't know how long you will have withdrawal syndrome. It could be for a very long time. Would you rather have severe symptoms for a long time or tolerable symptoms? Your choice.

 

On 8/30/2011 at 3:28 PM, Rhiannon said:

 

I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

[Armorall]

@Colonial thanks, I've read those quotes from Alto and Rhiannon before and again, all this occurs to me a different way/interpretation, but I think pointless to deliberate. Cheers  and happy healing!

[sunnysideup69]

Hi @Cocopuffz17, just dropping by to say hi, I think I read you were doing better. Thanks for giving us all hope and encouragement so consistently

 

[Colonial]

Really bad night last night. Slept from 2 am to 5 am, woke, at least consciously into another Cortisol induced Sleep Paralysis Neurological nightmare.

 I couldn't move for about 5 minutes even though I was conscious. My mouth was filled with what tasted like a metallic fire...

The center of my chest was swirling in a hot green that smelled like different numbers... And I was smelling the color red and tasting the number 5...

I was shaking and I was shivering cold even though my head was hot and I was sweating...

 

Then I was finally able to break through the paralysis and I was able to move to the bathroom to vomit..Then my stomach started cramping and I was doubled over for 10 minutes.Tasting and smelling different colors and numbers the whole time.The metallic let up but then I was smelling smoke that wasn't there. Everything in the bathroom had a "assignment" to it. The sink was the number 9 and female but the shower smelled purple and it was Male. I'm not sure if I passed out but I'm missing time.It lasted about half an hour before I could get back to bed. Took some anxiety meds and I fell asleep again about 8 am and slept till about 10 am.

 

Scared ****less to go back to sleep tonight.

 

 

[Rozon1]

Hey @Colonial just checking in on you . Hope you’re well. Did you get back to sleep?

 

yoi mentioned earlier in your first post I think about tapering. Do you recommend liquid tapering with suspension or just liquid tapering? 

[Colonial]

@Rozon1Thanks buddy, I did ok last night, still got jolted up in a Cortisol spike panic after only about 4 hours but I was able to fall back for another 2 in about half an hour.

 

I personally would recommend whatever tapering does NOT include you having to make solution up yourself, if possible, but something compounded at a pharmacy, or getting a manufactured liquid at a pharmacy and using a syringe.  

 

I'm unsure what "liquid tapering WITH SUSPENSION" means as per just liquid tapering.

I did NOT Cut up pills and put them in water, etc. 

My Doctor would NOT allow something like that because if you don't know what your doing, only who knows what your getting per dose.

He was fine with letting me cut the immediate release Wellbutrin pills in 1/2 and in 1/4th but once we got at levels lower than that, it was unrealistic to know what dose your actually getting so, I had them compounded at the pharmacy.  Otherwise your just not right on the dose and even being off 10% each day if your already struggling is not good. And I agree because when you have a compound pharmacy within 15 minutes, AND you have to get your insurance doctors approval to do it before the insurance will pay for it, that's TWO DOCTORS at the insurance also saying, yes, do that.  So it's like, a legal back up covering my doctor.

 

I can't conceive of ANY doctor or medical group in the MEDICAL LAWSUIT CRAZY CAPITAL state of the union that is New Jersey agreeing to say "sure make up your own liquid, have at it, good luck to you."  And if Your continuing to do things AGAINST medical advice, they are allowed to drop you, and then you have no doctor, so you have to work with each other.

 

With the paxil, they were 2 extended release pills, so they could not be tampered with, so instead of changing me over to the liquid version all at once, which is a HUGE change to your system, HOW your getting the med, we stayed with taking one pill, and then just added the manufacture liquid paxil solution to get me up to the dosage.  Considering the trouble and symptoms I had changing only HALF of my paxil dose to the manufactured liquid, it was a really smart call on His part as a doctor.

 

Also, the liquid was immediate release, stays only about 19 hours in your system, so when i took the whole dose in the morning, I had wicked symptoms from about 3 am to 9am.  When I switched taking it at night, the symptoms switched to late afternoon, so again, He was the one who thought to take half the dose at 12 hour intervals, and withing 4 days the symptoms were greatly reduced.

 

So for a Doctor who was brand new to the world of drug withdrawals, that was 2 calls he made that, kudos to him, were smart, not changing BOTH of my paxil extended tabs over to liquid all at once, but keeping me on at least 1 pill, thus allowing my body to only have to deal with trying to compensate to "learn" how to absorb the 50% in the new form, and then him also figuring out that the symptom manifestation would be helped by splitting the liquid INTO 2 Doses over about 12 hours so the med level wasn't spiking so high all at once and then nothing in my system come 19 hours later.

 

I am concerned, though, that this episode might have been related to the fact that now that I'm, down to the last few lines on the 0.5 ml syringe, each of my drops are now representing 25 to 33% of what's still my daily dose.  if it gets too bad and i have to make further smaller reductions that 0.04 at a time IDK How I could do that but.  But it could be seasonal related.

 

Hopefully its just a bump in my neurological world because it's getting to be spring and my brain is "waking up" from hibernation, along with the med drop I just did 8 days ago. Or I suppose we could get the Liquid compounded at NOT so strong a strength, so each line drop would NOT represent so much of a Percentage med decrease.  

 

But, eventually at some point you have to just bite the bullet and jump off. It was the same call with the Wellbutrin, if you look at that dose decrease on my signature line. eventually the compound had to be bigger cuts than 10% as well. 

 

Since March 1st,  I'm at 12/100th of 1mg, thats pretty damn good if you ask me, and that is 3 lines on the syringe.

So, I can get down to 4/100th of one with this small syringe so.

 

But that's a decision MONTHS FROM NOW, So, I'll deal with it then with Brassmonkey when the time comes, if He thinks thats a safe dose to jump from depending on how my symptoms have gone and how long in between drops, etc.  But I won't "jump off" until I have been on my "final dose" for a good 2 months, that just seems like a prudent step for anyone.

[Terry]

On 3/8/2020 at 10:10 AM, Colonial said:

I'm, down to the last few lines on the 0.5 ml syringe, each of my drops are now representing 25 to 33% of what's still my daily dose. 

Do you measure your liquid AD as it comes from the bottle?  Diluting your Paxil would enable you to make smaller cuts and might make your tapering go smoother.  I dilute my liquid sertraline and am able to use a 1 ml syringe to measure my dose.  When I get to lower doses I will need to change the dilution amount so that I can measure very small quantities. 

 

Take care,

Terry

[Colonial]

2 hours ago, Terry said:

Do you measure your liquid AD as it comes from the bottle?  Diluting your Paxil would enable you to make smaller cuts and might make your tapering go smoother.  I dilute my liquid sertraline and am able to use a 1 ml syringe to measure my dose.  When I get to lower doses I will need to change the dilution amount so that I can measure very small quantities. 

 

Take care,

Terry

 

Thank you so much for thinking of me! 🙂

It's funny you should mention it, because that is a route that I don't want to go, but I did go purchase 2 gallons of distilled water, while it's still on the shelves in this hysteria, just in case that is the route My Doctor and I choose to go. To be honest, I think He would just tell Me "Let's just compound it", which is fine with Me per se,  I'm sure the compound pharmacy could make a liquid diluted instead of changing me over to pills. Each med is different, I'd have to know how long a liquid formula was still "potent" for once I started diluting it and any other info like that.

 

Thanks again! ❤️

 

[Colonial]

 

I wish I never started this Nightmare path  5 years, 2 months and 10 days ago...

 

[Cocopuffz17]

23 minutes ago, Colonial said:

 

I wish I never started this Nightmare path  5 years, 2 months and 10 days ago...

 

I know it’s tough. You cannot go through all this pain to give up. You got this! You are so strong and disciplined to make it this far. I know you can make it through! Getting your true body back will be the best thing ever! 
 

Remember everyday that passes is one day closer to being healed. 

[Colonial]

6 minutes ago, Cocopuffz17 said:

I know it’s tough. You cannot go through all this pain to give up. You got this! You are so strongly and disciplined to make it this far. I know you can make it through! Getting your true body back will be the best thing ever! 
 

Remember everyday that passes is one day closer to being healed. 

 

Thank You...  💔

[Altostrata]

Hello, Colonial, how are you doing?

[Colonial]

 

Thanks for checking in on Me!

I was getting around to making this post for You and @brassmonkey to eventually have to read, so here it goes.

 

It's been 6 months on this dose and I'm still not recovered fully from whatever seemed like it was going to kill in in April- May.

As you can see from my signature line, I was down to the last 6 lines of the 0.3 mg syringe 2 times a day over last winter: 11/4/19 0.24mgs, 2/1/20 0.16mgs, 3/1/20 0.12mgs.

I was stable 3 months at that dose, then dropped 1/3rd down to 4 ticks on the syringe Feb, 1st, than dropped 1 more March 1st. Total of 0.12mgs drop.

Then the pandemic hit and I figures to leave it be at that dose for awhile.  April 6th woke up with diarrhea, by end of the 7th I couldn't breath.

 

I never had cough or fever which back then were the only 2 Covid symptoms they were telling us, but them I started having allergic reaction type issues, difficulty swallowing, face going numb, etc.  Was in the Emergency room a few times in April which was our peak infection time since it didn't strike me as Paxil related, even though many of the symptoms I did have before, I just hadn't been that sick since July of 2015, and I wasn't sure if 0.12mgs could provoke that severe of a reaction, since I didn't remember anaphylaxis type issues being an issue for me in WD. Also, while at the hospital they told me about the then developing info on the: cytokine storm syndrome.  So because of that, we were all under the impression the reaction I was having was Covid.

Eventually, I was having trouble urinating as well, and they almost did a spinal tap since the migraine and sensitivity to light and sore neck was so severe.

by Mid May my symptom notes included:

 

 

5/12 5:30pm:  muscle spasms in face, (chin and each side of nose), hands arthritic, tight sore muscle knots down, both 

8:30pm:  weak legs, almost fell going up steps/

During that week, instead of going numb from the waist down, I went completely numb down the ENTIRE right side of my body at 2am.

So now I had to decide if I was having a Covid related stroke, etc.

 

The problem is, nothing was coming back on the test results, the first 2 times at the hosptial and if You just keep presenting yourself at the E.R.In a pandemic with strange phantom symptoms you know as well as I do that eventually you get written off as anxiety related psycho- somatic, so I just ignored it and it resolved itself by morning, but pretty scary, the entire and just the rght side of my body.

 

The symptoms, like WD, would revolve and come and go, and I had many things on the: https://www.neurosymptoms.org/  page.

So was it Covid or the Paxil drop or both?  Couldn't tell, as even my anti body test came back negative.

I asked the doctor is they "could" be related, would someone who's body isn't able to produce enough of a response to test positive for the virus while it's active in your system also be the same reason why they wouldn't produce enough of a response to show anti bodies and He did suspect so.

 

We then had to have the discussion of why I was having allergic reaction type issues chronically since that time, and we talked about the system being in chronic senseless overdrive due to stress, drugs, infections, etc.

 

As you can imagine, He doesn't think the Paxil drop of 0.12mgs could have possibly anything to do with it, even though I pointed out to him that it technically was a 50% drop of my current dose in only 30 days.  Now, if it wasn't Covid, it very well may have been that if I had just dropped it 1 line instead of 2 in February and stayed there 3 months, repeat, I would have been ok.  Or it could have been Covid which set off a "kindling" response reaction regardless of if I had made a drop or not, or both.  There is a report now of a person testing positive to a different strain of Covid and He's much sicker for it the second time.

 

At this point, most of the symptoms have resolved themselves but this week I had some difficulty swallowing and facial numbness like I had been stung by a bee.

Since June I have been taking Azelastine HCI nasal spray, and it made a big difference in helping me to breath and solve the allergic symptoms.  I don't do well with benedryl and I'm allergic to steroids and anti inflammatories, so I'm faily constrained as to what options I have.  I have been blessed that I have not had any anaphylaxis issues to foods or been stung by a bee, etc. since the WD episodes began, and I thought for the most part I had grown out of them.

 

I had a heart attack when I was 19 from going into shock after eating 1 slice of pizza and a Chinese egg roll at college.  I had no discernable heart beat or blood pressure when I arrived at the E.R..  I remember them telling me the only sign of life I had was that I was screaming.  Lol.

 

So, I'm here dealing with questions about moving forward.  Was my issue a reaction to a Covid induced issue on a system already so worn down my 5 years of "kindling"?  The docotr is like: " I know you do all this math and stuff with the percentages and stuff, but I just don't see what 10 percent of 1 mg could possibly be doing".  And I understand.  I remember when I first came to this site, reading about someone who said that if they open the cymbalta capsule and count out 20, they could only drop it to 18, since when they dropped it to 16 they were too sick".  And I said the same thing to myself as what I know the doctors are thinking.  I said to myself: "Well, I'm obviosuly going to have to take what I read on this site with a grain of salt, since some of these people have to be psycho somatic if they think dropping from 20 beads t0 16 an be that problematic".  Until it happened to Me, now I know.  So I understand why the doctors don't get it, it's extremely hard to believe that such small drops could be so problematic.  Except I had the severe reaction only 2 years ago when I rushed from 3.6 down to 2.0 in five months:

 

, 1/1/18 3.6 mgs, 2/15/18 3.2 mgs. 4/13/18 2.8mgs, 5/11/18 2.4mgs, 6/10/18 2.0 mgs, 

 

I remember it being August, it being over 90 degrees and being freezing wrapped up in a blanket in the doctors office and Him have to raise my xanax to get me stabilized because I made the mistake of too many drops every month for 5 months straight, something my body, I've come to realize, just can't handle.  I'm one of those people who can't keep changing my med level so often, regardless of how small a percentage it seems to be.  I'm one of those who "needs" 2-3 months between drops regardless of the amount.  I can get away with it for 2 months, but past that was a disaster always waiting to catch up with me. 

 

So it's been 6 months since the 2nd drop, 5 months since I was so sick I thought I was literally dying 3 times, and the symptoms still rotate from time to time.

And Autumn is generally a bad time for me to make med drop BEFORE November.  Ever since the Wellbutrin WD I have alot of neurological issues from the end of August until I can super cold air in my lungs end of Sept-Oct.  It's uncanny, within a week of near freezing temps, the brain rights itself and the issues abate until about March 10th,when the brain attempts to come out of hibernation and starts refiring neurons and we start all over again.

 

I've been smelling colors and tasting numbers again this week, trouble reading, letters upside down in words or not being able to recognize them, trouble reading, sleep paralysis, and missing time.  Like I found myself at the top of the hill with the dog the other day and don't know how long I was there, didn't remember getting off the couch to go walk the dog.  So I've learned not to add to the "neurological autumn" symptoms that come every year now by adding a drop in september but try to wait it out until October when things settle down.

 

So October 1st will be about 6 months since I started getting sick, but a drop then would be 1/3rd of my remaining dose from 0.12 to 0.08.  But perhaps if I then hold until Feb or March and only drop 1 line and not drop 3 lines in 30 days it will be ok.  Sorry about the spelling, it's hard to think this tie of year. 

 

So do "we" have reports of WD inducing allergic reaction type responses in people after prolonged attempts of WD from so much kindling over time?  Thanks.

 

Edited September 6, 2020 by ChessieCat
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[brassmonkey]

That's been quit an ordeal. We have gotten a number of reports of allergic type reactions from our members. There is not index of them so you would have to do a site search to find any.

 

Are you using a commercially made liquid paxil?

 

For your upcoming reduction, is the reason for it being so large because that is what the marking on the syringe are?  If you were to mix the commercial liquid half and half with water you would have to take a dose that is twice the volume to get the same amount of medication. In that way if you reduced by one line you wound reduce the dose by 1/6 instead of 1/3. By working with the dilution ration you could do even smaller reductions in needed.

[Colonial]

@brassmonkey

 

Yes, I am on the manufacturer produced liquid.

 

My concern has always been would I be able to make a reasonably equal dose if I diluted the days liquid in half to make that 1/6th drop for 2-3 months until I could go back to the full strength when I eventually dropped again to the 2nd line.  Again, I don't know if it was just dropping 3 lines so fast, in 30 days but when all the Covid tests, even the anti body came back negative, I had to face the possibility that it was the 2 Paxil drops that equaled 50% in only 30 days, even though up until then they had Me believing it was Covid that just wasn't registering on the tests.  I suppose the optimum situation would be to see if the manufacturer could produce a batch at a less concentrated rate. It's normally manufactured at 2-1:  2 mgs per ml. If I could get it reversed, at 5 or 10 ml per mg, I could go back to making smaller % drops.

 

Thank you for the info on the others having allergic type reactions. I could very well have had been dealing with both, and just not have made enough of an immune response to register on the test, albeit if I'm having enough of an immune response to be dealing with anaphylactic type issues, I don't know how that could be.  However, I could have had Covid, and that doesn't necessarily have to be why I had the issues I did. Whatever it was, my entire body just went into a free for all like it was attacking itself without knowing why, which is why they assumed Covid.  Without knowing one way or another, I'm loath to move forward

 

Thanks so much.

Edited September 6, 2020 by Colonial

[Hanna72]

Hi @Colonial

Just read your post, and that is a lot you have been going through. Sorry to hear that you had to endure all that.

Your topic on allergies caught my eye. I have been doing some research on it, wondering if me stopping Paxil has been the main cause of my extreme allergies that have flared up. I have come to the conclusion that it is possible. The immune system has a direct connection to the nervous system, and as my nervous system heals and is super sensitive, therefore interferes with the immune system. So there just might be a connection. 

Wishing you the best and hoping better days are coming your way.

 

Take care🙏

 

 

[Colonial]

@Hanna72

20 minutes ago, Hanna72 said:

The immune system has a direct connection to the nervous system, and as my nervous system heals and is super sensitive, therefore interferes with the immune system. So there just might be a connection. 

 

Hi Hanna!  Thank you for your post, it makes alot of sense. It very well may be a direct connection indeed.  The issue of the Cytokine Storms and the inflammatory response with Covid is very interesting as well. Have a great week ahead!

[brassmonkey]

With all the tests coming back negative it really supports the idea that making a 50% reduction in 30 days was too fast. even doing a 1/6th reduction is going to be too much. Especially at the lower end of a taper it is very important not to make reductions larger than 10%. It is also important to not pay attention to the calendar. It's all about balancing how you react to each reduction to how fast and how large you go. Slow and small is always better. Going back to the full strength liquid at 2 marks would be self defeating.

[Colonial]

Thank you!  And sorry if I explained that incorrectly.

 

Getting down to the 2 marks is where I would be by the 2nd drop if I dropped from the 3 I am at now down to 2.5 marks by making a suspension on my own for a few months.

Then when I dropped again, it would be equal to 2 lines on the syringe, but that is still large percentage wise, I understand Your point.

 

Thanks again!