Giulietta

[Giulietta]

Perhaps I might have added in the above post (unwitting omission) why I am using compounded liquid as opposed to compounded powder capsules. 

 

After contacting 2 local reputable compounding pharmacies in my state - the best they would do is repackage beads in amounts of 5 mg per capsule. In addition to the lack of flexibility - and in dosages I knew wouldn't work for me - it was prohibitively costly.  Neither would compound from a powder.

 

Finally - I was referred to the currently used compounding pharmacy, whose process for compounding is to suspend the drug in an oil base. I have an extremely sensitive nervous system and the liquid would allow me to make very small changes - but I didn't appreciate/understand that it was immediately released into the blood stream (and hence shorter half-life?).

 

 

 

 

[Giulietta]

Updated dates, dosages and symptoms

 

Summary for 8/10-8/12 - symptoms were pretty much the same and at the same times. Total duloxetine each day was 9.6 mg - split evenly at 6.30 and 1.30/2.

 

6.30 a.m. Awoke and ate breakfast.

6.30 a.m. Took 300 mg gabapentin, 2.5 mg lisinopril, 10 mg crestor, .5 mg clonazepam, 4.8 mg liquid duloxetine (1.6 ml)

12 p.m. Ate lunch

1.00 p.m. Took 300 mg gabapentin

1.30-2ish Took 4.8 mg liquid duloxetine (1.6 ml)

4 p.m. Anxiety, Tinnitis, Jitteriness (1.5 - 3 hours depending on 10th, 11th or 12th).

6 p.m. Ate dinner and took 600 mg lamotrigine XR

10 p.m. Took 400 mg gabapentin & 1.5 mg clonazepam and went to bed

 

Awaken around 3-4 in the morning - and back to sleep without sleep aids

 

August 13 (originally posted last night but copied) - this is the first day of a cut (9.25 down from 9.6 mg)

 

6.30 Ate breakfast

6.30 Took 4.25 mg liquid dulox (1.5 ml), 300 mg gabapentin, 2.5 mg lisinopril, 10 mg crestor, .5 mg clonazepam

12 p.m. lunch
1 p.m. 300 mg gabapentin

1 -1.30 p.m. 5 mg liquid duloxetine -  anxiety (1-2 hours)

1.30 - 4 p.m. mild anxiety

5 pm anxiety, tinnitus and jitters (3.5 hours)
6 p.m. Ate dinner Lamotrigine XR 600 mg.
9 pm 400 mg gabapentin and 1.5 mg clonazepam and bed

 

Awakened at 1 and back to sleep without sleep aids

 

August 14 (today)  - thus far doing well!

 

6.30 Ate breakfast

6.30 Took 4.25 mg liquid dulox (1.5 ml), 300 mg gabapentin, 2.5 mg lisinopril, 10 mg crestor, .5 mg clonazepam

12 p.m. lunch
1 p.m. 300 mg gabapentin and 5 mg liquid duloxetine
6 p.m. Ate dinner Lamotrigine XR 600 mg.
9 pm 400 mg gabapentin and 1.5 mg clonazepam and bed

 

 

 

 

[Giulietta]

1 hour ago, Guilietta said:

August 14 (today)  - thus far doing well!

  

6.30 Ate breakfast

6.30 Took 4.25 mg liquid dulox (1.5 ml), 300 mg gabapentin, 2.5 mg lisinopril, 10 mg crestor, .5 mg clonazepam

 

Edit to the above - Awoke initially around 5.45 with anxiety.

 

[Giulietta]

Hi there.

 

How would I use the BrassMonkey technique with compounded capsules and a decrease of 10% over 4 weeks and minimize the number of capsule sizes needed? 

 

Does one have to have a week's worth of capsules made up at a time (for example, Week 1: 4.6 mg bid, Week 2: 4.5 mg bid, etc.)?

 

Thanks,

 

G.

[brassmonkey]

Hi Guilietta-- Trying to do a Brassmonkey Slide using compounded capsules would be a major pain in the ...... As you surmised above you would have to have the capsules made up in batches of 14 (2bid) for the first three weeks of the taper and then a batch of 42 (2bid) for the last week and the two week hold period. This would be prohibitively expensive, not to mention that your would require a new prescription for each batch.  So you would have to add doctors visits on top of that.

 

The Brassmonkey Slide method is designed as a do-it-yourself sort of thing.  That way you have control over the dosing, the timing, the reduction rate and can maintain some control over the cost.  

 

If you would like to try a Brassmonkey Slide then we will need some more information about your medication.  For a starter:

 

Do the capsules contain beads or powder?

 

What is the listed strength of a capsule as listed on the bottle?

 

Do you own a scale such as the Gemini-20?

 

What is your current dose and how often do you take it?

 

This information will help get us started, but there will be more questions.  I am sitting in a hotel room in the wilds of New Mexico ATM, and will be heading into the outback for the next week or so.  The connectivity can be really poor at times but I will check in as best as I can to help get things going.

 

[Giulietta]

Thank you for the expert input on powder compounding. Your facts support my hunches.

 

11 hours ago, brassmonkey said:

Do the capsules contain beads or powder?

 

What is the listed strength of a capsule as listed on the bottle?

 

Do you own a scale such as the Gemini-20?

 

What is your current dose and how often do you take it?

 

To answer your questions:

 

Duloxetine capsules contain beads.

 

The listed strength on the generic's bottle is 20 mg per capsule. This is the lowest dose capsule.

 

I do not own a scale.

 

My current dose is 9.25 mg (which I am taking as compounded short-acting liquid since December 2018). I am taking this in a split dose - so roughly 4.6 mg at 7 a.m. and 1.30-2 p.m.

 

This idea is really a stroke of genius. It has made a huge improvement in my QOL.

 

Enjoy your trip throughout NM. It's a gorgeous place I am told by a friend who traveled there twice a year marveled at its beauty.

 

Thanks again,

 

G.

[brassmonkey]

I'll have to look things over, but we should be able to work out a Brassmonkey Slide using the counting beads method.  Using scale and weighing things seems to be the easiest method for most people, but at least in the beginning counting beads should work.

 

In general how sensitive are you when making changes? Do tiny changes cause great affect?  It will be best if there is some wiggle room in dosing if we want to count beads.

 

If splitting doses during the day is a good thing for you, then we will incorporate it into the slide.

[Giulietta]

Hi there!

 

I split the doses with the liquid as my symptoms starting about 3 became anywhere from unpleasant to acutely unpleasant. I did not realize until Alostrata's comments that liquids are short-acting - so the liquid is out of my system for the most part by 1.30-2ish.

 

Perhaps with beads I may not have this issue as they are ER. But I honestly don't know as I am at 50% of the dose with generic cymbalta (12 hour half life as you doubtless know). ChessieCat indicated in one of here posts I believe that the transition from one form to another may need to be taken into consideration.

 

With ER formula I am not sure of the amount of wriggle room - but I'll make a try where you think we have some flexibility. I am in general sensitive to CNS meds. The 2 mg drop (per MD!) in the liquid was intolerable.

 

Thanks again,

 

G.

[manymoretodays]

Hi Guiletta,

When did you start the split doses of duloxetine?  And then, any improvement in the unpleasant symptoms that were hitting around 3 pm yet?

And then I'm wondering, when did you start the compounded liquid?

 

And yes, definitely.......a careful cross-over should be taken into consideration.

 

Thanks.

L, P, H, and G,

mmt

[Giulietta]

Hello mmt,

 

I hope you are doing well.

 

I started the split dose on 2nd August. I take 40-45% of the day's total dose around 7 a.m. and the rest at 1.30/2 pm. It has made a huge difference in the quality of life - I do not have the anxiety, jitteriness and loud tinnitus (and some other symptoms) that I did prior to splitting.

 

I started the compounded liquid in December 2018. A compounded form of the duloxetine was the only way I could see a tapered approach happening given my trouble managing the beads.

 

That being said - as I am now below 10 mg I wonder if I should be on a delayed or extended release formula. The split smaller dosage may mean more WD symptoms in a short acting formula. I don't know. What do you think?

 

Thanks,

 

G.

 

 

 

 

 

 

[manymoretodays]

On 8/18/2019 at 3:48 PM, Guilietta said:

Hello mmt,

 

I hope you are doing well.

 

I started the split dose on 2nd August. I take 40-45% of the day's total dose around 7 a.m. and the rest at 1.30/2 pm. It has made a huge difference in the quality of life - I do not have the anxiety, jitteriness and loud tinnitus (and some other symptoms) that I did prior to splitting.

 

I started the compounded liquid in December 2018. A compounded form of the duloxetine was the only way I could see a tapered approach happening given my trouble managing the beads.

 

That being said - as I am now below 10 mg I wonder if I should be on a delayed or extended release formula. The split smaller dosage may mean more WD symptoms in a short acting formula. I don't know. What do you think?

 

Thanks,

 

G.

 

Hi Guilietta,

 

Yah......doing well here, all told.  A bit of the after vacation- back to reality blues, as well as the big ch cha change in my smart phone.  I lost(or it got stolen) old droid.......I'll call that one Freud droid,  on the 8th of August, while out of town and...........  I'm kind of needing some kind of support group, myself, these last few days for THE BIG CHANGE IN SMART PHONE.  The insurance has been helpful and all, as has my service provider.  And it took awhile to hit me.......this important object loss.  I do try to keep my expectations low, as far as when I shall have the resumed assistance of my droid.  However, I get easily frustrated with this learning curve.....and the amount of time taken to adapt.   Just in the last few days though, since I received my replacement device.

 

Excellent travel, family and friend reune, though.  Oh.......I've got some good people in my life.  So many are so far away though.  And such a wonderful time out in nature too.  The trees and forests, the lakes........especially Lake Superior.  It was grand.

 

Alrighty then.  So......first things first.  With your experiment on the split doses of compounded duloxetine liquid.........how is that going to date?  You've had 18 days.  I'm just going to mention that........with a change like that, and I do think it may be a good one for you, going forward.........despite my previous concern..........you don't wan't to be making other changes in tandem, tapering and such. 

 

I do see your notes above, you last posted the 14th of August.  I'm not seeing any symptoms there though.  You can just add the symptoms to the right of the time.  And then just rate them on a 1-10 scale as well.  Include sleep in there too.  Really helpful 

 

You had gotten that format down and boy howdy, can that be helpful to me/us in answering questions and guiding,  and will be to you as well, as you make decisions.

 

I don't necessarily think that the split smaller dosage of compounded duloxetine liquid will mean more WD symptoms.  I think the opposite. 

And good, good to know that this is the formulation that you have been using now since December 2018.  That's almost 9 months.  We might not want to rock that boat then, and make any changes with the formulation.  Things to factor in, as far as making a change in formulation now for you:  cost, ease, ability, WD symptoms(you know things like cognitive difficulties and confusion, frustration, etc.), and sensitivities around medication/drug changes.  You've already got a lot to manage with your present drugs and schedules too.  Hopefully you've mastered this okay to date.

 

Guilietta,  if you don't mind saying.......what is your neurological health condition?  You mentioned that in your introduction post and then being put on clonazepam at age 9, for it.

And then......how many years of benzo's for you now?

 

So......I'm okay with the split on duloxetine compounded liquid.  I just want to see, via notes how that is going right now.  And meantime, would encourage you to just sit tight before doing your next taper.  The rule of 3KIS: keep it simple, slow, and stable

 

Okie doke.

L, P, H, and G,

mmt

 

Edited August 20, 2019 by manymoretodays

[Giulietta]

Hello mmt,

 

I am glad you had an enjoyable vacation. Sorry about the inconvenience with the exception of an unwanted change in phones. The learning curve (and the $$$) of new devices and technology is a huge inconvenience for most of us I think.

 

To the taper...

 

Split dosage has been going OK since starting. Generally:

• Afternoon / evening symptoms are better (but not gone).
• I may experience fatigue 1.5 - 2 hours after each dose.

This afternoon I am having more anxiety and other symptoms - as the liquid vs beads issue is causing me a fair amount of grief. 
 

6 hours ago, manymoretodays said:

I don't necessarily think that the split smaller dosage of compounded duloxetine liquid will mean more WD symptoms.  I think the opposite.

 

Why do you think the split doses (short acting compounded formula) are better than a single dose (developed as an extended release formula)?

 

I wonder if a short-half life extended release formula may be materially better than two doses of a short-acting formula. It may have a smoother and more even distribution in the blood. With the liquid I may be getting two quick peaks 7 hours apart (and I don't know how quickly they taper or drop and leave the blood).

 

Clonazepam was prescribed to treat anxiety about 15 years ago. I am treated for a seizure disorder since age 9. 

 

 

Thanks,

 

G.

[manymoretodays]

15 hours ago, Guilietta said:

This afternoon I am having more anxiety and other symptoms - as the liquid vs beads issue is causing me a fair amount of grief. 
 

23 hours ago, manymoretodays said:

I don't necessarily think that the split smaller dosage of compounded duloxetine liquid will mean more WD symptoms.  I think the opposite.

 

Why do you think the split doses (short acting compounded formula) are better than a single dose (developed as an extended release formula)?

 

I wonder if a short-half life extended release formula may be materially better than two doses of a short-acting formula. It may have a smoother and more even distribution in the blood. With the liquid I may be getting two quick peaks 7 hours apart (and I don't know how quickly they taper or drop and leave the blood).

 

Clonazepam was prescribed to treat anxiety about 15 years ago. I am treated for a seizure disorder since age 9. 

 

 

I know, I know.  It's perplexing.  Did you notice any significant changes with symptoms when you first started with the compounded liquid?  Or shortly after?  That was back in December of 2018.  And then what had you been on, prior to that?  What form of duloxetine

 

Cymbalta is tricky to taper. It does not come in liquid form and cannot be compounded into a liquid. To protect the drug, each bead inside the gelatin capsule has an enteric coating to protect the drug from stomach acid, which would destroy the drug. (It is absorbed further down in the digestive tract.) The pellets cannot be dissolved in any liquid without destroying the active ingredient.

You cannot crush the pellets (see http://survivingantidepressants.org/index.php?/topic/275-do-not-crush-list/page__view__findpost__p__3021 ) or dissolve them in a solution -- the drug would never get into your system, it would be destroyed in your stomach and you would have immediate cold-turkey withdrawal.

 

^ Taken from the topic:  Tips for tapering off Cymbalta(duloxetine)

 

 

On the split doses, I mean assuming you are getting some of the active ingredient still............you may be effectively covering for the lack of extended release that way. 

If only we could get you a personal bead counter person or something........that would be great.  I don't know that anyone can develop a compounded single dose extended release formula.  I mean, reading further into the topic........that's my take.  And then, in light of that it's already been 8 months of this present formula.........well, I don't know what to think.  I did ask for some further input, as to the other moderators thoughts so........we can patiently await that too.

 

I hope that addressed everything for now.

 

L, P, H, and G,

mmt

 

 

[Giulietta]

Hi there mmt.

 

Thank you for your helpful email. I really appreciate it and thoughts and advice of your fellow moderators.

 

I read the link you sent me about 2 months into my liquid taper (Feb or Mar). I don't know how much duloxetine I actually get with the liquid. See the bottom of the email for more about why I didn't make a change.*

 

When I picked up my script at the pharmacy this morning - I learned more disquieting information:

• Basic process: The pharmacy crushes the beads and they instill the powder into the liquid.
• I asked how the product survives the stomach acid. They indicated that not all of the drug makes it into the duodenum - a somewhat reluctant admission.
• The pharmacy could not tell me how much drug product is being absorbed (or even make a guestimate). Is there some kind of equation to get a rough idea?
• So - it would seem I have not received any of my full doses and I don't know how much I am getting.
• My symptoms on a split dose are helped but not satisfactorily.

It seems likely that my taper may have been beyond the recommended 10% a month.

 

What dosage do we think I may actually be getting? 50%? 40% 0%? (for example 5 mg not the 9.25 mg)? 

 

Even though I am holding at 9.25 mg (since past 10 days I think) - I understand I need to go slower at the end of the taper.

 

I've spent hundreds of hours researching this, calculating, etc. And look what's come of it. I'm so frustrated.

 

Thanks,

 

G.

 

*It seemed logical but I couldn't reconcile it with the MD's RX for liquid formulation to an accredited compounding pharmacy without challenging a liquid formulation.  Maybe tapering off this drug actually feels this bad. He told me to expect symptoms. An MD at a top ranked hospital would I think do better. I also had failed in my attempts to count beads so I thought this was my best (only) option.

[Giulietta]

3 hours ago, manymoretodays said:

To protect the drug, each bead inside the gelatin capsule has an enteric coating to protect the drug from stomach acid, which would destroy the drug. (It is absorbed further down in the digestive tract.) The pellets cannot be dissolved in any liquid without destroying the active ingredient.

 

I just reread this (again).

 

Is this the same as CT?

 

[Altostrata]

Guilietta, I'm not sure if we can help you with the liquid Cymbala. Making a liquid from it is not something we recommend or have any experience with.

 

Because the drug itself deteriorates as it's going down your digestive tract, it's impossible to tell how much active ingredient is getting into you each day. If you wanted to convert to bead-counting, we cannot tell what dosage to take.

 

You also seem to be taking all your drugs on an inconsistent schedule. Taking them in batches as you do increases the chance of drug-drug interactions. So we cannot tell what symptoms you have are from withdrawal or adverse drug interactions.

 

Also, you are taking a bunch of neuroactive drugs, yet you say some are for medical conditions. Which are for medical conditions, and what are the conditions?

 

So I really do not know what to say about making your tapering off Cymbalta go smoother.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

[Giulietta]

Hello Alostrata.

 

Thank you for your message and consideration.

 

I understand more fully now that you are not able to make any kind of estimation of how much duloxetine I may be absorbing and also why liquid is not recommended.

 

It seems converting to beads may be the path forward / advisable since liquid is not recommended and there is no experience with it. Am I understanding you correctly? My goal is a smooth and successful taper.

 

On 8/22/2019 at 1:40 PM, Altostrata said:

Because the drug itself deteriorates as it's going down your digestive tract, it's impossibleto tell how much active ingredient is getting into you each day. If you wanted to convert to bead-counting, we cannot tell what dosage to take. 

 

Hypothetically, if I were to convert to a dosage in beads from  my current dose (which may be between 1 and 9.25)  - would one simply choose a dose that seems reasonable and adjust up or down - depending on how I am feeling?

 

And based on how that goes - would SA would be able to guide me on my taper?

 

On 8/22/2019 at 1:40 PM, Altostrata said:

You also seem to be taking all your drugs on an inconsistent schedule. Taking them in batches as you do increases the chance of drug-drug interactions. So we cannot tell what symptoms you have are from withdrawal or adverse drug interactions.

 

What do you mean by inconsistent schedule?

 

Interesting point about batches. Any thoughts you have about dosing to minimize effects would be welcomed. I have looked at my cocktail of neurology/psych meds and didn't think I had options to those presented to me.

 

I have epilepsy and take lamotrigine ER (6 pm with a full meal) and gabapentin (7.00 a.m., 1-2 p.m. and 8-9 p.m.) to manage it. Monotherapy hasn't proved itself to be therapeutic. I am familiar with the side effects of these meds. They are different from the withdrawal symptoms.

 

A note that the lorazepam is one-two tablets as needed and hasn't been needed since February 2019.

 

On 8/22/2019 at 1:40 PM, Altostrata said:

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this. 

 

I will review/update/clarify this tomorrow.

 

I hope I have provided you with useful information. I am grateful for your help.

 

Thanks.

[Giulietta]

Here is my medication schedule -

 

7 a.m.: Gapabentin 300 mg, clonazepam .5 mg, lisinpril, crestor, duloxetine liquid 4.6 mg (split as it is short-acting)

1 p.m.: Gapabentin 300 mg

2 p.m.: Duloxetine liquid - remainder of day's dose as it is short-acting 4.6 mg

6 p.m. Lamotrigine ER 600 mg

9 p.m. Gapapentin 400 mg, Clonazepam 1.5 mg

[Altostrata]

Hypothetically, you'd have to guess how many beads might be equivalent to the amount of duloxetine is actually getting into you. It would be better to start lower than higher. You can always increase. It will take at least 4 days for the drug to get to steady-state in your bloodstream.

 

While you're doing these experiments, please keep daily notes about when you take your drugs, their dosages, and your symptoms throughout the day. Post at least 24 hours of notes at a time in this topic.

 

What is the clonazepam for?

[Giulietta]

This morning I experienced symptoms which I have also experienced on previous mornings and which limit ordinary activities. Any comments regarding them, why they occur and what I can do to alleviate them, would be appreciated. 

 

7 a.m. - get up and feeling fine

7.15-7.20ish - walk around a bit (take out dog, etc.) and was abruptly affected by imbalance,  trouble walking and weakness in the leg muscles (particularly thigh) - and thighs perhaps stiff/sore?

7.30 - breakfast

7.45 - medications,including my morning dose of duloxetine (4.5 mg - or less depending on % of liquid absorbed). I had to sit down.

7.45 - 10 am - I sat/worked at my desk. Symptoms gradually dissipated and by 10 I was able to get up and walk on the treadmill for 30 minutes. While there were othe

10 a.m. to present - usual day with no major symptoms

 

Feeling worse this afternoon in general - the day has not been productive (like yesterday) and I have spent a lot of time investigating duloxetine, calculating dosages, etc. - since late last week. I feel like I don't do anything else.

 

By way of a quick update - information on dulox in oil-suspension absorption comparison to beads is pending. I'd feel more comfortable with this information before approximating beads.

[Gridley]

16 minutes ago, Guilietta said:

abruptly affected by imbalance,  trouble walking and weakness in the leg muscles (particularly thigh) -

If you will Google "SurvivingAntidepressants vestibular" you will find several SA threads on dizziness, which is a common WD symptom.  Google "SurvivingAntidepressants weak legs" for threads on weakness and fatigue in the legs.

[Giulietta]

Thanks, Gridley. Will do a search on vestibular. Hope you are well.

[Giulietta]

Hi Gridley.

 

The vestibular convernsation was illuminating. I experienced the same symptoms this morning.

 

Do the different withdrawal symptoms cluster during different times? For example, the tinnitus has been much less of a problem than it has been in earlier months. However, the vestibular problems seem to have worsened.

 

Why is this?

Also - I am not working now - but don't know what I'd do between the vision, foggy thinking and vestibular issues (for example). It would be good to have some income (duh) and also focus on something else. Computers feature so prominently in today's work place. Do you have any comments/thoughts on this?

 

As always - THANK YOU.

 

I hope I can provide you with some support as you are so helpful to me and others.

 

G.

 

 

[Gridley]

10 minutes ago, Guilietta said:

Do the different withdrawal symptoms cluster during different times? For example, the tinnitus has been much less of a problem than it has been in earlier months. However, the vestibular problems seem to have worsened.

 

 

The symptoms come and go really without any rhyme or reason.  As you taper, you're healing all the time but also things are getting shifted around in your central nervous system, producing symptoms.  I have symptoms appear, disappear and reappear all the time.  This analogy explains it well:

 

   On 12/3/2015 at 10:41 AM,  apace41 said: 

Basically- you have a building where the MAJOR steel structures are trying to be rebuilt at different times - ALL while people are coming and going in the building and attempting to work.

It would be like if the World Trade Center Towers hadn't completely fallen - but had crumbled inside in different places.. Imagine if you were trying to rebuild the tower - WHILE people were coming and going and trying to work in the building!  You'd have to set up a temporary elevator - but when you needed to fix part of that area, you'd have to tear down that elevator and set up a temporary elevator somewhere else. And so on. You'd have to build, work around, then tear down, then build again, then work around, then build... ALL while people are coming and going, ALL while the furniture is being replaced, ALL while the walls are getting repainted... ALL while life is going on INSIDE the building. No doubt it would be chaotic. That is EXACTLY what is happening with windows and waves.  The windows are where the body has "got it right" for a day or so - but then the building shifts and the brain works on something else - and it's chaos again while another temporary pathway is set up to reroute function until repairs are made.  

Regarding work, I don't really have ny suggestions except it would be good to have it be low stress, especially given your symptoms.  Petsitting?  Babysitting?  Computers are a vast mystery to me, so I don't have a clue how to make money money online.

[Giulietta]

Hi again -

 

Thanks for the insight. I reread the post comparing the repair work to the World Trade Center catastrophe.

 

I will read more about about windows and waves.

 

This is utterly the worst drug I have / am tapering off. It is truly unbelievable.  When the MD want me to reduce lamotrigine ER (previous attempt) they wanted to reduce my 600 mg dose to 550 mg dose at once. Holy cow....these people can't be trusted.

 

Hope you are having a good day. Computers aren't my thing either, which is why I have so much trouble navigating the system. So I'm particularly grateful for you and others posting links and advising me exactly the item to search for.

 

Thanks again.

[manymoretodays]

Hi Guilietta,

So hard to know which are WD, and which are adverse reactions/side effects from your drugs.  I just scanned Lamictal/lamotrigine, looked it up for side effects and found the visual, as well as symptoms that could be related to the vestibular dys-function.   And......I recall my own unfortunate incidence of taking a higher dose of Lamictal, and suffering/struggling with so many side effects.  I could barely walk, had double vision, and great nauseau.  All of which remedied after a few days of getting back to a lower dosage.   My prescribing doctor at that time, actually did consider lamotrigine to have some antidepressant qualities, of course, different from the SSRI, SSNRI's, and poorly understood, if understood at all.  I imagine you must have titrated slowly up to that dose, back when you started it. 

And just saying......as, not right now, yet perhaps soon, you might consider getting the dose reduced, on the lamotrigine......again, carefully and cautiously of course.

So possibly, at present, some of your symptoms could be yes WD, but also side effects/adverse reactions to lamotrigine. 

What does your doctor think of all your medications?  At all supportive about tapering off some and minimizing dosages of others?

And then, at present, is your epilepsy well controlled?  I hope so Guilietta.  Do you have a neurologist, for your doctor now?  That would be great.

 

20 hours ago, Guilietta said:

 

By way of a quick update - information on dulox in oil-suspension absorption comparison to beads is pending. I'd feel more comfortable with this information before approximating beads.

Thank you for trying to get this information.  And then when you do get any information......please share with us, along with where the information came from.  We tend to be a bit more rigorous here, in requiring a sound basis for opinions, than many sites I suppose.  I'm thinking that you may be having the compounding agency looking into this.  Which will be good.  Anyway......yes, keep us posted on this.

 

And okay, all from me for now,

Hoping to Labor Laboriously through the holiday weekend.....mostly.......still so far behind in things, since vacation.  So much to do.  Not enough time in each day.  Yet, it's good......my life and life in general, for me.

 

L, P, H, and G,

mmt

Edited August 29, 2019 by manymoretodays
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[Giulietta]

Hello mmt,

 

Great to hear from you. Hope everything is well. You made excellent points. I will of course share what I know and what I learn. Here is some feedback and there is a lot of it. Please follow-up with what I don't cover:

 

9 minutes ago, manymoretodays said:

So hard to know which are WD, and which are adverse reactions/side effects from your drugs.  I just scanned Lamictal/lamotrigine, looked it up for side effects and found the visual, as well as symptoms that could be related to the vestibular dys-function.   And......I recall my own unfortunate incidence of taking a higher dose of Lamictal, and suffering/struggling with so many side effects.  I could barely walk, had double vision, and great nauseau. 

 

AEDs (anti-epilepsy drugs) are also a picnic. I have been on one or another of them (but not all) for about 40 years. I am grateful that after catamenial epilepsy resolved -  I had a relatively good 20 years - my epilepsy has been well controlled.  Anxiety makes it worse.  The AEDs do have side effects, of which I am very familiar and which are common and usual for me. I take this into consideration with observing my WD symptoms of the duloxetine taper - and that the tapering process may (is likely) to be exacerbating some of these symptoms and is responsible for many I do not otherwise experience. The exception is when I have accidentally double-dosed on lamotrigine and/or gabapentin I suffer with the same side effects you mentioned. I cannot walk (imagine crawling to the bathroom), headache, vertigo, am nauseated, head spinning and can only lie down and be as still as can be to sleep it off. Anxiety. Otherwise I don't experience these side effects. I don't recall the side effects of getting used to lamotrigne or working up to it. I had to abruptly transiition from trileptal due to hyponatremia which put me the hospital a couple of times for saline IVs. They put me on lorazepam four times a day to manage any breakthrough seizures. It took me months to adjust and my anxiety was high. I was on lorazepam for months  - and was successfully tapered off (4 times a day).  The other instance of these side effects was getting on gabapentin.   It took 4 months! I dreaded each of my three a day doses because I knew each would be followed by the same symptoms as the double-dose of lamotrigine or any of my other seizure meds for 2+ hours. Fortunately I don't do that very often. The MD was aware of this and kept telling me to hang in there. One day I called and said that was it - I couldn't tolerate it any more. Then the following day - my body accepted the drug.

 

19 minutes ago, manymoretodays said:

My prescribing doctor at that time, actually did consider lamotrigine to have some antidepressant qualities, of course, different from the SSRI, SSNRI's, and poorly understood, if understood at all. 

 

The MD who initially prescribed the lamotrigine and the gabapentin indicated both would have some mood elevating effects. She also indicated the side effects - which are common to many/most AEDs. Fortunately - unless the dose is too high - I am spared most of them. They do affect my short-term memory and cause me to have 'foggy thinking' as well - but I do know the level at which they affect me and the taper is exacerbating them (as well as typing!)  is much higher (and more limiting in my daily life) than usual. I hope that makes sense. So this is why I am confident about distinguishing my WD symptoms from usual drug side effects in most but not all cases. 

 

Lamotrigine was a new type of seizures med and yes, it worked differently, and I don't know how. I have tried to reduce twice. Lamotrigine experience: note about this - MD wanted to reduce me from 600 to 550 (I think by alternating 300 and 250 tablets from one day to two days - and I don't know. I think I tried this for a week. Since the SA website - I did the math and noted that  300 to 250 is -8.33% A big drop over a short time I think. So, I didn't feel (more auras) and went back up to 600. What are your thoughts about this rate? Note that my level at this time was in the therapeutic range.

 

Re: getting on lamotrigine: I honestly don't think I tapered up.I started on regular lamotrigine and had incomplete coverage (a lot of auras). So they tried the ER (extended release) and that worked better. Unfortunately the ER is not covered by all medical insurance! It costs about $2100 per 90 days.

 

Gabapentin experience the reduction was too quick so I will try this again at a slower rate. Separately of course.

 

Other things I have recently learned about lamotrigine: one prospective new neurologist indicated that lamotrigine can anxiety if the level is too high (mine is therapeutic level). Lamotrigine can cause insomnia and blurry vision - and likewise - blurry vision particularly has been worse since the taper. I have been to 5 opthalmologists for full exams including retinal  - and things are normal. Reading a computer screen on some days (and part of the day) is near impossible - particularly spreadsheets.  have read that lamotrigine can have depressive effects! I am with some reluctance trying a new neurologist and she also proposed reducing lamotrigine to 550 as it may help reduce anxiety.  I indicated that unless medically necessary I would not entertain changes to lamotrigine given my current taper.

 

About dosage level reductions - I would like to eliminate clonazepam and reduce lamotrigine and gabapentin if possible.

 

Although I think discussion on this is premature -  your expert opinions are most welcome - my thoughts are to reduce lamotrogine first as clonazepam is a bit sedating, then reduce/eliminate clonazepam and hold for a while at a lower rate, give my body a chance to adjust, then try and reduce gapabentin by 300 mg.  The lowest I was able to manage gabapentin was 700 mg day but wasn't too comfortable at that level. Drop could have been more than 10% a month -not good for someone with epilepsy in particular.

 

Good question about what the MDs think about all my meds:

1. Psych MD thinks I need an SSRI/SNRI (this was the first appointment with him after sharing my medical history). He wants to taper me off clonazepam (wanted to do first - but I indicated that I'd been on it for years, and didn't want to mess with it. It wasn't the thing causing the most troublesom side effects.

2. Neurologists:

One neuro acknowledged I take a lot of meds. She would like to reduce the lamotrigine if possible. See my comments above on that. She thinks I may be on clonazepam forever. When I mentioned my experience with the taper - she suggested that it was 'about quality of life' and that there are a lot of people with epilepsy on these meds (of course - psych MDs want to prescribe to people in a population with a higher propensity to depression and anxiety). She didn't think it was worth it trying to get off. Neurologists are as bad as psych MDs.

Long term neuro: see above on lamotrigine and gabapentin. I can't recall her comments about clonazepam. She seems somewhat supportive of the taper. Her nurse also gets the reason for the slow taper and that the closer I get to zero - the more slowly I must go. Kudos for her.

Lipid specialist: acknowledged I take a lot of meds and gets my reluctance to start the statin (which can also cause muscle pain/weakness) - I started this med in March as I am at risk for cardiovascular disease (even after losing 25 pounds and daily exercise).

 

Again -

Thanks for everything. Sorry this is so long! Let me know if I can provide more information.

 

I had a bad morning - and while feeling OK k- I need to toodle off to the grocery store as the cupboards are bare.

 

Separate note on dulox update. Will do this later. 

1 hour ago, manymoretodays said:

Hoping to Labor Laboriously through the holiday weekend.....mostly.......still so far behind in things, since vacation.  So much to do.  Not enough time in each day.  Yet, it's good......my life and life in general, for me

 

I so know this. So much to do and can't work fast enough to catch up! Paperwork is my nemesis and I'm surrounded by it. I (wasted?) $5 on a magnet, "Do More Of What Makes You Happy" I keep it next to my computer.  😁

 

Also want to put out a question on what people are doing for work. Is there a forum on that? I could use some guidance....

 

Take care.

 

G

 

 

 

 

[manymoretodays]

19 minutes ago, Guilietta said:

Also want to put out a question on what people are doing for work. Is there a forum on that? I could use some guidance....

 

Working(as in getting a paycheck ) through withdrawal

^ I found this one in Symptoms and Self Care

I generally do searches for topics either in the box at the top of the forum where I think I might find it, or by just doing a google search, in my main browser, with the topic or subject of interest.....and then add in survivingantidepressants.org

 

And you may find that you have commented on a topic, that has not had many comments recently.  So just be patient.  Sometimes too, there's a lot to be found in the previous comments too.

 

No, you're fine.  I elaborate a lot too sometimes.  I'll have to give your response a better read through, ASAP.  Off to the races.....for me.....for today......no races, just determined to get to some things offline.  Boring cleaning and more fun outside stuff is all really. 

Best,

mmt

Edited August 29, 2019 by manymoretodays
spelling, punctuation

[Giulietta]

On 8/28/2019 at 4:02 PM, Gridley said:

If you will Google "SurvivingAntidepressants vestibular" you will find several SA threads on dizziness, which is a common WD symptom.

 

Hi Gridley,

 

I found a wealth of information on dizziness (including the vestibular search suggestion) on SA.

 

Could you comment on my dizziness (accompanied by very blurry vision - I can barely read) which I have in the mornings? It starts around  7-7.30  a.m. and lasts for about 3 hours. This has been going on since 8/28.

 

I dropped to 9 mg on 8/25 and on the BrassMonkey method I was expecting to decrease to 8.75 mg. Given the dizziness and blurry vision - I am holding at 9 and dealing with the symptoms.

 

Does this seem reasonable or should I nudge things back up to 9.25? At what point would I decide to do this?

 

Thanks,

Guilietta

 

 

 

 

 

[Gridley]

53 minutes ago, Guilietta said:

I am holding at 9 and dealing with the symptoms.

 

My suggestion would be to hold at 9mg until your symptoms lessen. That is to say, I would opt for consistency, letting your CNS settle in at that dose,   I wouldn't risk an updose. 

[Giulietta]

Thanks, Gridley. Will do. This is the first morning I am less dizzy and fewer 'vertigo' when turning my head.

 

I have been working diligently and as often as permitted to evaluate what % of duloxetine I may be getting through powder in the liquid formula. I am concerned that I may have done the equivalent of a cold turkey or the equivalent thereof based on additional research and closer reading of some hopeful documents. This has been a downer.

 

I really don't want to transition unless I have a  good idea of where I may be at. I don't want to make WD symptoms worse (which I will post hopefully today).

 

Yesterday I learned that my beloved 14 year old dog has some serious health problems  led by heart and early stage of kidney failure.  I am so sorry about the loss of your little one. I learned of your trauma after reading more posts. They are children in fur coats.

 

I also missed my appointment with my epilepsy MD yesterday - and I had so wanted (and needed) to talk with her about the med problems.

 

Had a tough few days. 😢 Hope you are doing OK with your benzo generic transition.

 

 

[Gridley]

29 minutes ago, Guilietta said:

Yesterday I learned that my beloved 14 year old dog has some serious health problems  led by heart and early stage of kidney failure. 

I'm sorry about your little one.  I have had many elderly dogs in the same condition, and the good news is, you can keep them going for quite a while.  If it's congestive heart failure (or its predecessor mitral valve prolapse), there's  great drug called Pimobendan that you can ask your vet about.  When my beloved dog Grandpa had valve prolapse and early stage kidney failure, I found him a good dog acupuncturist to treat the kidney issues and though it wasn't a cure, we had a long happy time together after diagnosis.  The other thing that a wise person advised me was to give your dog something to look forward to every day--a walk, a ride, whatever.  

[Giulietta]

Thank you for sharing your experience with caring for your dogs and making their lives happier. When Angus is up to it I take him for 5 minute walk up and down the street. He likes a massage. He will have an ultrasound soon to evaluate the cause of the heart disease (whether valve or other). He has irregular and slow heartbeat and weak peripheral pulse. Muscle strands are stretched more than is normal for his breed and size.

 

I have been fortunate to have 2 dogs in the past - one made it to 14 the other to 10. We are so lucky to have them in our lives and give them loving homes.

 

Kindly,

 

Guilietta

[Giulietta]

Hello

 

Would like to provide an update -

 

Not feeling dizzy (thank goodness) but I am continuing to have vision problems (as indicated previously - these are much worse than the usual).  Can barely read computer or paper. I am having immense trouble typing - and am a fast an accurate one. Continued brain fog. Holding at 9 mg for about 10 days.

 

I am continuing to plug away on what dosage I may be absorbing and it is quite interesting. Won't waste anyone's time here on that until I have some findings. Going to contact two psych MDs who may be willing to intelligently help me off this med. Names are posted on SA. Hope they are still practicing and will see a new patient.

 

 

[Giulietta]

Are there recommended guidelines/questions to include in a phone coversation/interview with a prospective MD re: tapering and mood management without meds?

 

I have searched unsuccessfully (including using google including SA in the search terms) for interviewing/ asking an MD or psychiatrist before deciding to meet.

 

Thanks

[Rosetta]

Hi Guilietta,

 

You asked a question on my thread about dizziness.  The issue I had recently turned out to be because of astigmatism.  I needed special contact lenses (toric) instead of regular lenses.  When I wore contacts 2 years ago the regular ones were fine.  Now that I have the right lenses all is well except that I need prescription reading glasses.  The power for one eye is too different than the other it seems.  Reading without proper power exacerbates the muscle tension in my right side all the way down to my toes!!  There might be a nerve being pinched by the muscle tension.  I can't figure it out.  

 

Dizziness is a very common for people with protracted withdrawal from ADs.  POTS  is also very common.  That is a dramatic drop in blood pressure after standing up.  I had that for many months after I quit Zoloft.  I would lose all vision -- complete blackness -- and nearly fall down.  I could lower myself to the ground or lean against a wall.  Eventually, my vision and balance returned.  That does not happen to me any longer.  A less dramatic lack of blood flow to the head can cause dizziness, too, of course, and it may last much longer.  My personal opinion is that low or inconsistent blood pressure is a complication of the dysautonomia (aka protracted withdrawal syndrome) that is caused by reduction or cessation of ADs and benzos.  Inconsistent and low blood pressure seems, to me, to affect vision, but additionally, muscle issues affect vision.  The eyes use muscles to focus.  Wobbly and weak legs indicate that your muscles may have been affected by the reduction in dulox.  Why not the muscles in the eyes as well?  This will clear up with time.  Consistent dosing on a strict schedule is the key.  

 

Continue to post your symptom logs and be sure to include the doses and time of ingestion.  I think that Alto is concerned that you take many different drugs all at once in the morning.  After you post enough logs she might make a suggestion that you move one of the drugs to a different time, but she never recommends such changes without seeing enough logs.  This is because consistency over time is very important.  If one sacrifices consistency without good evidence the increased symptoms may cause a person to switch back too quickly thus making yet another change that increases symptoms again.  Every change in time of ingestion requires a period of holding to let symptoms settle out.  No reduction can be made for at least a week or two.  So, the taper lasts longer.

 

My two cents on the liquid vs bea d counting issue: hold the course unless your symptom log causes a Mod to tell you otherwise.  It sound like you suffered protracted WD from the switch from capsule to liquid back in 2018.  Maybe you are nearly done with duloxitine?!  I cannot imagine you could determine how many beads equal what your current dose might be.  Any change to beads might mean an updose, and if an up dose isn't needed it might destabilize your system.  It would make your taper longer, too.  Perhaps the safest course is to continue to taper with the liquid Until you are off?  I understand you are hoping for an improvement in your symptoms, and I don't mean to discount the distress you feel everyday twice a day.  That's awful -- I know quite well.  It's been my observation over the past two years that people who hope for improvement often create further destabilization and increased symptoms or new symptoms.  The levels of Hell in protracted WD are limitless!  Any change -- dose, time of ingestion, type of drug, addition of drugs, etc-- all risk further descent into that Hell. That is why Alto won't recommend changes without many days of logs. She knows it's better to do nothing than to make an unwarranted change. 

 

None of this is meant to invalidate your justified feelings of frustration, anger, and fear over what is happening to you.  It's outrageous that you were prescribed so many different drugs that interact and all have various side effects.  It's malpractice and it should be considered criminally reckless.  Your need for Anti seizure meds is one thing, but to add the others!! I seriously doubt that any of your drugs has ever been tested in conjunction with the others.  How they work together is unknown.  The prescription for a liquid? Goodgrief!  Yes, that was a CT, but you can recover!  I am. It's been horrible. It's worth It to wait It out without trying new drugs!!!!

 

It sounds as if you are on a tiny dose of dul ox and the liquid is giving you the chance to taper to miniscule amounts. That might be a blessing as your "jumping off" dose will be so tiny.  After zero many people continue to experience issues even after a long and careful taper.  If you do have issues afterward it does not mean you need the drug or that you failed.  It's just further adjustment of your brain to the healing process.  It can take a very long time, but the symptoms become bearable annoyances.

 

Rosetta