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Guilietta

Thank you, Rosetta, for this generous and helpful response. It will take me a bit of time to respond to consider, respond and organize my my WD effects to see if perhaps Alto or another expert can share some thoughts.

 

Many need retraining on 'first do no harm' and Hippocrates.

 

I hope your trip to Spain is enjoyable and you are managing being a different environment (stressful in and of itself!).

 

With kindest regards,

 

Guilietta

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manymoretodays

Hi G,

And apologies, for taking so long to give you some input on this well written detailed post back on the 29th. 

I'm not really an "expert" G.  Just got through my own stuff with tapering and WD and found it really helped me, to learn more, or as much as I could.  And I like it, it's actually interesting and fun......the pharmacology stuff.  I'm a novice though on that though. 

I do have some thoughts on your post of the 29th and will share ASAP.  🤓

 

Have you heard back from the compounding pharmacy at all?

 

And as far as questions, to use in interviewing a prospective doctor, to assist with tapering and WD.  I don't think we have a topic on that.  I think you may have seen these?

How to talk to a doctor about tapering and withdrawal and what to expect

Does your doctor know you are tapering?

Withdrawal dialogues and encouragement

^ this one has some cartoon type videos and may be encouraging to you, in designing interview questions

 

None of those have direct interview questions to ask, yet may help you design some.  Feel free to add to any of these topics, as well G.  Or even post right here what you came up with and we can try and add your input to topics already established.

 

Oh, I hope that helps and that today is going well enough.  I'll be back to comment on the other later today.  Just getting caught up a bit now.

 

L, P, H, and G,

mmt

 

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Guilietta

Thank you, mmt. I will post an update of my activities since Friday and through today. It's been an adventure. Mods and veteran contributors on SA may of course know already. But for the record I am documenting. Maybe it will help others. 😉

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Guilietta
On 8/21/2019 at 11:37 AM, manymoretodays said:

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.

 

Here, here!  There's a great business opportunity for an enterprising sort.

I called two compounding pharmacies near me and they will compound the drug in capsules. I did not get pricing - they'd have to compound a different dosage every week or 10 days. I am dropping by about .25 mg a week (or so I thought). But - this is not off the table yet.

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Guilietta

Hello Rosetta -

 

Finally I have information (which I was gathering and researching since Friday) and time to properly respond to your thoughtful email. The dizziness is incapacitating and your explanation helps.

 

I you are enjoying your stay in Spain and feeling fine.

 

I met wtih the prescribing MD this morning. Before I go into that - I'd like to respond to your comment about your vision for what it may be worth. 

  • Is it possible your prescription is wrong if vision between eyes does not seem balanced. This could be the cause of the problem.
  • My left eye has changed significantly in the past few months. This does cause significant eye strain but no muscle tension or headache that I have noticed.
  • Although I read that changes in vision (not just blurriness and floaters) may be caused by changes in ADs I cannot the source. It would fit.

I met with the prescribing MD this morning, told him about my symptoms, the ugly prospect that I may not be absorbing the drug in the dosage I think I am and what to do about it,  and that I am considerign transitioning to pellets and why.   The MD agreed that I am likely not receiving 9 mg and that perhaps we should increase it a bit. I indicated I wanted to give my body/brain a chance to heal.

  • I showed him the prescriber's information and pointed out section 2.2 about 'do not crush - duloxetine is unstable in an acidic environment' . I indicated that the compounding pharmacy had used crushed pellets in their suspension. No real response.
  • There is a duloxetine level blood test, which I will get this week.  He suggested to draw 3 hours after dosing. Depending on the level, he would make dosage change recommendations.
  • I showed him the abstract of 'In vitro stability, potency and dissolultion of duloxetine enteric-coated pellets after exposure to applesauce, apple juice and chocolate pudding," which I reread over the weekend. I asked what "...the mean dissolution profile of the sample exposed to pudding reported near-total release (90%) after 2 hours in 0.1 N HCl during the gastric challenge portion of the dissolution test" means. Does this mean I am getting only 10% of the drug?
  • The compounding pharmacy alleges that my suspension has a pH of 5.5, which is the same as the pudding.  🧐
  • The MD doesn't think I have serotonin syndrome because I am not taking more than one of these meds AND that I don't have 'severe' symptoms.  He did not suggest that I have prolonged withdrawal syndrome.

A chemist (pharma) I know suggested I get a 2nd opinion with a provider who has significant clinical experience with the drug. This is a tall order but one worth pursuing. After ridding myself of this - and stabilizing - I'll need to taper off clonazepam.

 

On 9/5/2019 at 11:10 PM, Rosetta said:

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. 

 

Aside from possible updosing (unless this is recommended) are there any pros to switching to beads? 

 

Since no one (I see why) has experience with liquid - why would one stay with it?

 

I will post medicine schedule and symptoms tomorrow.

 

Thank you so very much,

 

Guilietta

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ChessieCat

Hi Guiletta,

 

When posting with a response to another member and a response to a mod, I suggest that you make two separates posts.  You will need to wait a few minutes before posting the second post otherwise they will be merged into the one (the software does this when two posts are made in close succession).

 

The reason for suggesting this is that your information may end up being overlooked and it makes it easier for the mods to see your response/questions to them.  Thank you.

 

 

 

I've asked the other mods for their assistance.

 

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manymoretodays

Hi G,

And okay, it looks like you have some more back on your research/studies/inquiries around the duloxetine.  I think Altostrata did weigh in on this a bit, in prior postings:

here and here

Simply put, you've had some nervous system destabilization already, and prior to starting here........which continues now.  Have you found someone outside of your doctor, who you work with as well, on just coping, with all the feelings and worries, and perhaps changes in your own belief, around the care you've received to date.  Is this doctor going to work out for you?  Or you may have not yet decided.

 

I know you mentioned some of the visual difficulties and computer usage difficulties in your post of the 29th, August, as well as in your initial introduction in June.  All I can really offer is just patience, with it all.......this trying to figure it all out.......and get there.......to more healing..........which I think you have been, and you are doing really well, under the circumstances.

 

First off, yes, you are having a lot of nervous system instabilty now.  And I'm sorry that your doctor does not recognize or validate any of this, as even possibly due to some WD.  A lot of us never find validation from our doctors.......so.......well, at least your not alone in that regard.

 

And okay, back to the post of yours here, 29 August.

 

So 40 years of AED's, starting with the clonazepam at age 9?  I was thinking, from one of your other posts, that it was only 20 years, and that you were younger.   And you had some good control of your epilepsy with this I believe.  Or was the clonazepam singularly effective for your epilepsy at one time?

So I'm wondering if some of the additional drugs were then added to treat the CNS depressant effects that benzo's can have.  As well as for addition control of your seizures(might not have been neccessary) and such.    I know it's water under the bridge now, and not to worry, you don't have to answer all my ponderings.  I think we might proceed better, just looking at the here and now situation.  And then how we can help, from time to time.

 

You mentioned the "anxiety" exacerbating the WD symptoms.  I'm just thinking  that it, the "anxiety" feelings could also be related to some of your drug(s), and then even interactions between them too.  So again, and I know you just noted above, that you would be posting, some daily notes or logs again......do so.  Try and get a couple of days of them all in one post.  That should help.  Simple format and sample notes are here.

You did some before, but did not note much about your symptom pattern throughout the day I noticed.  So add those in, briefly, and you can rate things with a 1-10 type scale system too, if you would like.

 

Your drug interactions check post is here  .  This is your basic interactions check and is good to start with.  Have you shared this with any of your doctors?  You might consider doing that too, to gain some support for your efforts.

 

So.....I'm not real hep on having you taper clonazepam after you are done with the duloxetine.  Not if it's still your mainstay for seizure control.  Maybe the gabapentin or lamotrigine next.  When was the last time, to the best of your recollection, when you were doing okay?  I mean what does your withdrawal stable look like? 

Are We There Yet? How Long is Withdrawal going to take? > Stability

This should help ^

And on the therapeutic doses, you mentioned this with your lamotrigine........I think we, here, may differ in our understanding of that, a bit, from what most doctors assume.  And in my own experience too, when I went with it all.  I often found myself struggling ALOT, when on a few medications, that blood levels were measured to check for therapeutic range of those meds.    I was being told I had to get to a certain level in my blood......before I would stabilize.    Sure, I adapted and adjusted a bit,  but much to my own detriment, was not getting better at all.  I just became more unstable from all the changes and drugs given to me, in the way of treatment.  Maybe you can relate.  Much more healing and stability, over time, for me, without the drugs.  It did not happen overnight or in any rapid time period though, unfortunately or fortunately.......as I always say........I am very fortunate, and most of the time,  in acceptance of my journey to date.

 

17 hours ago, Guilietta said:

Aside from possible updosing (unless this is recommended) are there any pros to switching to beads? 

 

Since no one (I see why) has experience with liquid - why would one stay with it?

 

Well, you would most likely be changing your dose, and we have no idea by how much.

Only to not upset the applecart further.

I'm not sure the blood level of the duloxetine will be all that helpful, other than finding out that you are getting some duloxetine now.  If you do switch to beads, and do compounding.......just remember that they should not be crushed(the pellets, the beads).

You might consider, again, just HOLDING on any drug changes for a bit too.  Until you have a bit more clarity on how to proceed, gained from all the input that you are now getting.  Both here and from your doctors.

 

And okay.  I hope I got to most everything.  And yah, we are conferring a bit, and you should hear from another moderator too, fairly soon.

 

Thanks Guilietta(G),

L, P, H, and G,

mmt

 

 

Edited by manymoretodays
proofed and edited! and again!

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Guilietta

Dosing and symptom update.

I have been holding at 9 mg (3 ml - taken as split dose) since cutting from 9.25 mg on August 25. I am following the BrassMonkey method. I was scheduled to make 2  cuts since then but have been holding due to symptoms.

 

Summary of dose changes by date:

  • 6/16-7/10: 10

  • 7/11 – 7/19: 10.2

  • 7/20-7/27: 10 mg

  • 7/28 – 8/4: 9.75 mg

  • 8/5-8/12: 9.6 mg

  • 8/13 – 8/24: 9.25 mg

  • 8/25 – present: 9 mg and holding

8/27 - present.  General comments: frequent mornings of dizziness, very blurry vision (much worse than usual), turns, hypotension, weak legs, imbalance and lack of coordination. These symptoms last all morning. Afternoons have in general not been bad. I would say I have experienced less drive and self discipline, less focus on pursuing goals and sought out sweets

on many days (unusual for me).

 

In addition to daily summaries from the past 3 days - I have provided daily summaries for two days between 8/27 and prior to 9/3 since the problems began on 8/27 and I separated the duloxetine dose in the morning from the rest of my meds on 9/3. Hope this is easy to took at. Thank you.

 

8/27: Looking for sugary foods!  - unusual for me

  • 7 a.m. Awaken and out with dog about 7.15. Start to feel dizzy, weak legs, imbalance. Struggle to walk .
  • 7.45 a.m. Eat breakast and take morning meds: 4.5 mg duloxetine, 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 8.15 Continued dizziness. Sit until 10. Struggle to read the computer screen or print. Hard to concentrate. Headache and weak arms. Trouble typing. Tinnitus, chills.
  • 10 a.m. Stable enough to walk.
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam

8/28: Looking for sugary foods!  unusual for me

  • 6.30 a.m. Awaken with nausea. 
  • 7.15. Out with dog.
  • 7.45 a.m. Eat breakast and take morning meds: 4.5 mg duloxetine, 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 8.30 a.m. Start to feel dizzy, weak legs, imbalance. Struggle to walk.
  • 8.45: Sit down. Hypotensive. Struggle to read the computer screen or print. Hard to concentrate. Headache and weak arms. Trouble typing. Tinnitus.
  • 10.30 a.m. Dizziness abated. Still trouble to think clearly.
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

9/3: Trying something new to alleviate morning dizziness: take morning duloxetine 30 min apart from other morning meds

  • 6.30. Awaken
  • 6.45 a.m. Take 4.5 mg duloxetine
  • 7.15 a.m. Breakfast and morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 8.00 a.m. Dizzy but less than previously - still sit down. Struggle to read the computer screen or print. Hard to concentrate. Headache and weak arms. Trouble typing. Difficult to think clearly.
  • 12 p.m. lunch
  • 1.00 p.m. gabapentin 300 mg
  • 2.00 p.m. duloxetine 4.5 mg
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

9/4: Looking for sugary foods! 

  • 6.30. Awaken
  • 6.45 a.m. Take 4.5 mg duloxetine
  • 7.15 a.m. Breakfast
  • 7.45 p.m.  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 12 p.m. lunch
  • 1.00 p.m. gabapentin 300 mg
  • 2.00 p.m. duloxetine 4.5 mg
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. gabapentin 400 mg, clonazepam 1.5 mg
  • 10 p.m. bed

9/7: Looking for sugary foods! 

  • 3 a.m. Awaken. Toss/turn / chills / awaken at 5.15
  • 6.45 a.m. Get up
  • 7.00 a.m. Duloxetine 4.5 mg
  • 7.30 a.m. Eat breakast and take morning meds:  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.30 a.m. Start to feel dizzy, weak legs, imbalance. Turns. Struggle to walk.
  • 7.45-9.45: Sit down. Struggle to read the computer screen or print. Hard to concentrate. Legs weak. Trouble typing. Tinnitus. Auras.
  • 11.30 a.m: Dizziness abated but still foggy thinking and blurry vision. Generally not feeling nifty.
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 2 p.m. Start to pick up (energy)
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

9/8...2 pieces of cake

  • 6.45 a.m. Get up
  • 7.00 a.m. Duloxetine 4.5 mg
  • 7.30 a.m. Eat breakast and take morning meds: 300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 7.30 a.m. Start to feel dizzy, weak legs, imbalance. Turns. Struggle to walk.
  • 7.45-9.45: Sit down. Struggle to read the computer screen or print. Hard to concentrate. Legs weak. Trouble typing. Tinnitus. Auras.
  • 11.30 a.m: Dizziness abated but still foggy thinking and blurry vision. Generally not feeling nifty.
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 3 p.m.: Auras
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

9/9 - sugar rush - 3 donuts and a piece of cake...

  • 3 a.m. Awaken. Toss/turn / chills / awaken at 5.15
  • 6.30 a.m. Get up. 4.5 mg duloxetine. Tinnitus.
  • 6.45 a.m. Breakfast
  • 7.00 a.m. Take morning meds:  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 4 p.m. Auras
  • 6 p.m. dinner
  • 6 p.m. lamotrigine ER 600 mg
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

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Altostrata

Are you still taking the duloxetine liquid?

 

We seem to have gone down a rabbit hole with the duloxetine compounding. To compound duloxetine, the pharmacy weighs the beads and puts them into custom dosage capsules. You cannot crush duloxetine or make a liquid from it.

 

This is explained in detail in Tips for tapering off Cymbalta (duloxetine). I've already repeated it several times here. Since you've been taking Cymbalta in liquid form, I cannot tell you what the equivalent dosage is in beads or milligrams of active ingredient, I have no idea how much drug you've actually been absorbing. I am not a bit surprised you seem to have an adverse reaction from the liquid each day.

 

As I've said before, to order custom dosage capsules, you'll have to guess at your current Cymbalta dose for the compounding pharmacy. It's better to start low and adjust. It could take a while -- like months -- before you find a dosage upon which you can stabilize. There is not point in planning a taper from Cymbalta without stabilizing on a dosage first.

 

That said, I am out of patience discussing the Cymbalta tapering problem.

 

I'm not even sure what we're doing here. Aside from the drugs you're taking for epilepsy -- I assume you see a neurologist for that -- you don't need to take ANY of the other drugs. As we discussed, their effects are duplicative at best and adverse in interaction at worst. Any or all of them can cause "dizzy, weak legs, imbalance" and yet you take them in handfuls several times a day.

 

Now, you decided you want to go off Cymbalta first, you initiated a taper with a cockamamie liquid, it seems to me you have to get the Cymbalta dosing settled BEFORE YOU PLAN ANY FURTHER TAPERING. Until this happens, I don't want to be involved in any tapering discussions, hypothetical or otherwise.

 

In the meantime, you'll have to cope with the adverse effects of the other 6 drugs you're taking, including Crestor, which can interact with the psychotropics. You might mention these issues to the numbskull doctors who put you on this dumb cocktail.

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Guilietta
On 9/9/2019 at 9:08 PM, ChessieCat said:

When posting with a response to another member and a response to a mod, I suggest that you make two separates posts. 

 

Hello ChessieCat,

 

Would you very kindly tell me where I should post my comments in the 2nd location? Before I post again to all - I would like to make sure I do this properly.

 

I thank you. Sorry for the dumb question. 😕

 

Guilietta

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ChessieCat

If a member has posted in your topic and you are responding to it, post here in your topic.

 

If you have posted to another member in their topic, and they respond to you, and want to respond then you respond to that post in their topic.

 

Make a post of your daily symptoms in your own topic.

 

Make a post responding to a member in your own topic as a different post (from the symptoms) here in your topic.

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Guilietta

Hello ChessieCat

Thank you for your response. I have made a note separately in an effort to remember this process.

 

To everyone -

 

Summary for last few days of my activities:

  • I finally reached a scientist at Lilly yesterday who confirmed I had essentially gone off CT in December - which is what Alto, mmt, you, and Rosetta have been telling I me. From SA I understood that tapering is so important (though not quite why - and no concept about do not crush cymbalta beads until after my taper began). The researcher also confirmed that the If  an MD at the #1 psychology dept in the country condoned that the proposal of a compounding pharmacy was dead wrong - how on earth did I know any better. I was compelled to contact Lilly even though experts and veterans on AD indicated this because I needed the clarity and had some hope that some drug might get through.

I really have been on the verge of tears since learning this from him yesterday - and for him to admit that this drug is essentially hell to get off of.  I am trying to stay positive - especially after all the time invsested in this - about 200 hours in total since last November. I have been filled intermittenly with hope about waves and windows - that I am healing - and now this direct admission from a researcher at Lilly.

 

I thank you everyone.

 

Kind regards,

Guilietta

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manymoretodays

((((((((Guilietta))))))))

Yes, stay positive.  Don't, however, neglect your feelings that are not so positive.  Give them their due.  It's always okay to let the tears flow around here too.

If you are still not sure on the why of tapering: 

Why taper by 10% of my dosage

more links to additional articles in the first post there

 

......and soon G., if not already, you'll have some beautiful fall weather and colors to enjoy!

You might enjoy some some of the posts and entries at Everything Matters: Beyond Meds. 

I'll include this one that should link you there:  About reframing: embrace your experience

 

Best, L, P, H, and G,

mmt

 

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Guilietta

Dear mmt,

 

Thank you for the kind and soothing words. You are a gem. Apple picking is around the corner (and hot apple pie!). :) Nights are chilly and acorns are all over the ground. What is special about this time of the year where you are?

 

As a follow-up to my comments on my call with Lilly, etc.,  to ChessieCat this morning - I spoke with my neurology RN to update her on my 'taper' in some detail  - that it is likely a CT and summarized my WD symptoms, including the brain zaps, tingling on my scalp, etc. yesterday afternoon/evening. She, the neuro, et al. knew I am tapering. I see the neurologist next Tuesday.  ;)

 

Can you advise on my next steps re: meds what do you think? I have read some of this on the site - but am not sure of what may be best for me and why.

  • To mitigate WD symptoms, promote healing and potential relapse - what are thoughts about how I may be best served?
    • Would I reinstate a low dose of cymbalta, and if so, how much.
      • Note that I did one CT of duloxetine in April/May 2018 and likely another in December 2018 (so two in about 6-8 months). Does this mean a small reinstatement would be a bad idea?
    • Would I start another AD instead of trying cymbalta? If so, is one better off with a long half-life SSRI?
    • Would I do nothing?
    • What are the ramifications for seizure management. What are these zaps and tingling on the scalp?

Duloxetine labwork (I don't know what value it is either) is not back yet. It takes 7-10 days to process.  I am continuing to take the liquid duloxetine twice daily. Until I split the dose a few weeks ago you may remember I had awful WD symptoms starting mid-afternoon consistently.

 

Your links will help me to prepare for my meeting on Tuesday (thanks again). It's a squeeze-in appointment. I'll bring some articles as well and memory-aids and list of interactions. Good idea. :) 

 

Thanks again for everything.

 

To good health, healing and happiness,

Guilietta

 

responses to your message a couple of days ago - at your leisure.

___________________________________________________________

 

To reply to your really good points and questions from Tuesday - fyi's.

  • I spoke to the compounding pharmacy and they have no more information to give me about the compound. I can provide if you want.
  • Current psych MD may change. I'm starting to look around and have asked people in my area if they can recommend someone.  The woman in Newton (Tsafir?) is about $625/hour and doesn't take insurance.
  • You inquired about my years on AEDs and ADs and clonazepam:
    • AEDs started at age 10 (rounded up from 9) - so I have been on for 47 years.
    • The clonazepam started about 15 or 17 years ago, not at age 9, and was prescribed for anxiety. SSRIs started about then too.
  • Anxiety could be related to my AEDs - you are quite right - especially at the dosages
    • After this mess with cymbalta is resolved I will again try to reduce AEDs. I need to stabilize first as you  said. I don't know how long this will take.
    • Anxiety may also be related to my epilepsy, not just the AEDs. Many patients with epilepsy are prone to anxiety and derpession.
  • Anxiety could be related to my AEDs - you are quite right - especially at the dosages
On 9/10/2019 at 1:29 PM, manymoretodays said:

when on a few medications, that blood levels were measured to check for therapeutic range of those meds.    I was being told I had to get to a certain level in my blood......before I would stabilize.

 

My experience as well! When the time is right (not now for sure) checking into ranges for dual therapy for gabapentin/lamotrigine is something I will do. I am curious.


 

 

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Guilietta
On 9/10/2019 at 1:29 PM, manymoretodays said:

Try and get a couple of days of them all in one post.  That should help.  Simple format and sample notes are here.

You did some before, but did not note much about your symptom pattern throughout the day I noticed.  So add those in, briefly, and you can rate things with a 1-10 type scale system too, if you would like.

 

Hi again - what did you think of my symptom posts - I made several days' worth. They look a lot like the sample ones. When I post again - I will do my best to rate them. Thanks. :)

 

I am going to start to have positive thoughts and relax so I sleep better tonight. I hope.

 

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Guilietta

Symptoms diary 9/11 - 9/13 - note did my best to rate symptoms this time. Higher values indicate higher severity. Please note brain zaps and scalp tingling on 9/12. The last time I had these brain zaps - which in June.

 

I have done a small amount of reading on this site and wikipedia about the disquieting brain zaps. As a person with epilepsy these are extremely disturbing. I am seeing my neurologist on Tuesday and I will ask her about these. I wish (substitute word) that I had known about this when starting this drug. God almighty! I take lamotrigine ER 600 mg and gabapentin 1000 mg - very high doses to manage my seizures and that hasn't helped.

 

Unlike the other report I read - these do not occur just when I am using the computer - but often outside, at the grocery store, etc.

 

9/11 - overall a decent day

  • 3 a.m. Awaken. Toss/turn / chills - chills 3
  • 6.30 a.m. Get up. Tinnitus - 3-4.
  • 6.45 a.m. Breakfast. Dulox 4.5 mg.
  • 7.30 a.m. Take morning meds:  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 12 p.m. Lunch
  • 1 p.m. 300 mg gabapentin
  • 3 p.m. 4.5 mg duloxetine
  • 4 p.m. Auras
  • 6 p.m. dinner and a lot of fatigue 7
  • 6 p.m. lamotrigine ER 600 mg
  • 6 p.m. - 8 auras and fatigue - 7
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

9/12 - really bad afternoon - 8-9 overall rating for afternoon

  • 3 a.m. Awaken. Toss/turn /anxiety - 4
  • 5.15 a.m. Awaken. Anxiety - 6
  • 6.30 Get up. Tinnitus - 4.
  • 6.45 a.m. Breakfast. Dulox 4.5 mg.
  • 7.15 - 9.45 a.m. Dizziness/imbalance -7
  • 7.45 a.m. Take morning meds:  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 8.00 a.m. Extremely blurry vision, trouble focusing, reading, typing - 7
  • 10.30 a.m. Call with Lilly
  • 12 p.m. Lunch. Fatigued. Auras. Lack of ambition and interest in anything. - 7
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. 4.5 mg duloxetine
  • 3 p.m. - 7 Brain zaps (start on left size of head - temporal lobe area and move to right side). Tingling and burning on scalp. Tingling in L hand - 8/9 (I can imagine these could be worse)
  • 4.30-5.30 p.m. Auras 7
  • 6 p.m. dinner and a lot of fatigue 7
  • 6 p.m. lamotrigine ER 600 mg
  • 6 p.m. - 8 auras and fatigue - 7
  • 8-10 p.m. Tinnitus. Very anxious. Cannot quiet mind or relax. Can't fall asleep.
  • 8.30 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 10 p.m. bed

9/13 - another bad day with zaps and tingling and buring sensations

  • 5.15 a.m. Awaken. Anxiety - 6
  • 6.30 Get up. Tinnitus - 4.
  • 6.45 a.m. Breakfast. Dulox 4.5 mg.
  • 7.15 a.m. Take morning meds:  300 mg gabapentin, .5 mg clonazepam, 10 mg crestor, vitamin D, calcium, omega 3, CoQ10
  • 8.00-11  a.m. Brain zaps & Tingling and burning on scalp. 7/8 Tingling in L hand and forearm - 6/7
  • 10 a.m.: Call with neurology RN. Got appointment for early this week with neurologist. Grateful.
  • 12 p.m. Lunch. Fatigued. Auras. Lack of ambition and interest in anything. - 7
  • 1 p.m. 300 mg gabapentin
  • 2 p.m. Duloxetine 4.5 mg
  • 3 p.m. - 7 Intermitten Brain zaps. Tingling and burning on scalp - mostly left side. Tingling in L hand - 7/8
  • 4.30-5.30 p.m. Auras 7
  • 6 p.m. dinner and a lot of fatigue 7
  • 6 p.m. lamotrigine ER 600 mg
  • 6 p.m. - 9 auras and exhaustion - 7
  • 8.00 p.m. 400 mg gabapentin, 1.5 mg clonazepam
  • 9 p.m. bed exhausted

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Rosetta

I'm so sorry you are feeling so bad.  I hope tomorrow is better.  I don't know if I ever brain zaps.  It seems unlikely that I never had one.  I had no idea that I was suffering protracted withdrawal for many years.  I have had heart zaps -- terrible heart zaps while sleeping.  That went on a long time after I quit Zoloft.  I'm trying to say that I understand part of what you are suffering  (((Guilietta)))

 

Feel better,

Rosetta

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Guilietta

Thank you, dear Rosetta, for your encouragement and empathy.

 

My gosh,  heart zaps? You poor thing. Did an MD or NP give you anything to relieve these symptoms? 

 

With my epilepsy this particularly has me unglued even though I am trying not to be unglued. It's hard for me  to describe - but they feel like sharp electrical pulses that in my case may start in one place in my brain and move around my head. Some times they are less strong. Another symptom is the tingling and burning on my scalp. Eke. I think that is the best I can describe. I see my neurologist on Tuesday, thank goodness, and hopefully she will advise.

 

We have a lovely sunny day here.

 

thanks for your kind support,

 

Guilietta

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Guilietta

Hello everyone,

 

By way of a quick update - I am doing OK - grateful to have zaps have been less intense  and less tingling and prickling today - and mostly on arms not scalp. Fewer auras as well. I am seeing my neurologist tomorrow morning. I am walking into the appointment with a postive outlook that she will understand and work with me to help me through this. I will also need to tell her that I am not pleased with the psych MD (whom she knows) and am looking for one who knows about cymbalta discontinuation syndrome and PAWs.

 

The videos are great and I love the cartoons.

 

Guilietta

 

 

 

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Guilietta

Hello all -

I would appreciate some advice, please.

 

I am meeting with my neurolist today. One topic will be next steps. Do I transition to another drug to taper - if so - which one will be easiest to taper off of - celexa (which I see may provide heart beat issues) - andhas fewest side effects (wouldn't we all like that answer) - or an updose with duloxetine beads? I have no idea about where to start on that. After doing a lot of reading on SA - I really don't kow which will put my nervous system through less grief.

 

Thanks, Guiilietta

 

 

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Baxter

Sending good vibes!

 

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Guilietta

Hi Baxter!

 

Thanks for the well wishes.

 

Epileptologist (neurologist specializings in epilepsy and mind also works with MDs on mood management)  could tell me that the brain zaps were not seizure related and would not cause seizures. I think she may have been surprised by the information (I printed out 50 double sided pages of documents, which I offered to leave with her) I had - and may have been new to her.

 

She suggested that I let the psych know I didn't feel confident with his care. He put in my note that he I would call Lilly and I would  contact compound pharmacies about dosing (I may have them count/re-encapsulate beads). She did give me information for a place in Dedham - where one of her patients goees for medication and counseling management. She did not recommend them per se but i ndicated another patient was happy with them.

 

Dedham is a hike for me - but I will call them about experience with cymbalta withdrawal and tapering.

 

Even though you are putting things on hold for a bit - here's the info:

 

Bridgewell's

The Sorner Center

125 Liberty Street

Danvers, MA 01923

 

I appreciate your thinking of me. :) I hope you are doing well and (mostly) stable now.

 

Thanks,

 

Guilietta

 

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Guilietta

 

Thank you Baxter and Rosetta for the kind words of support. For some reason I didn't see them until now. 😕

 

A few things  are bothering me and I wonder if you or anyone can advise - and how have you coped -

  • Coping and improving with anhedonia an lack of motivation (overwhelming laziness?) in usual activities and habits  as well as things I really want to do.  
  • These feelings and lack of interest in usual things that bring me some enjoyment lead me to fear falling into a state of depression - and that is frightening.
  • I wonder if the inadvertent (and likely) CT has put me at risk for depression and how I can overcome it.

Thanks,

Guilietta

 

 

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Guilietta

Hello all - I hope you can advise me.

 

My lab work results finally returned and are <5.0 ng/mL of a reference range 60-120 ng/mL.*  Blood specimen was collected 3.5 hours post a 4.5 mg dose (note this is liquid and crushed beads!). 

 

What do you recommend for next steps? Put another way - hypothetically - if you were in this situation (victim of idiot MD, pharmacy, etc. and that you didn't know that you don't know that beads can't be crushed) - what would you do next?

  • Should I reinstate? If so how much (1-2 mg? .5 mg? Other?)?
  • Should I taper down from wherever I am and try and cope with the WD effects?
  • What relieves the WD effects - partial reinstatement only?

I have been off duloxetine 20 mg (just about CT) since December 2018.

I am experiencing the physical WD effects from soup to nuts as well as anxiety and anhedonia. I have a seizure disorder and take a lot of medications for that.

 

I have read the recent posts on Amie's thread as well as the link below:

https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

I have not heard from the MD about this who has a poor batting average and the only person I have now.

Thank you very much,

Guilietta

*Note: "This test was developed and its performance characteristics determined by Mayo Clinic in a manner consistent with CLIA requirements. This test has not been cleared or approved by the U.S. Food and Drug Administration." (this same crooked outfit that approves these drugs)

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brassmonkey

We really need to know what medication you're talking about here.  There a several different ones mentioned in recent posts and the one that your signature says you are tapering your post says you CTed last year.

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ShiningLight
13 hours ago, Guilietta said:

A few things  are bothering me and I wonder if you or anyone can advise - and how have you coped -

  • Coping and improving with anhedonia an lack of motivation (overwhelming laziness?) in usual activities and habits  as well as things I really want to do.  

 

 

I struggle with this a lot. I'm not doing very well with it right now, but what does help when I can do it is trying to get some momentum going. Sometimes I set a goal, like 'this month I will do 2 social activities on the weekend,' and then work towards incremental progress. The only real solution is to do things anyway. I often do find it rewarding or pleasant when I do things, which leads me to do more positive things, etc. You grow motivation by taking action [and experiencing the rewards from those actions]. It's a self-perpetuating cycle, in both directions ie improvement leads to more improvement, and worsening leads to more worsening.

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Guilietta
13 hours ago, brassmonkey said:

We really need to know what medication you're talking about here.  There a several different ones mentioned in recent posts and the one that your signature says you are tapering your post says you CTed last year.

 

Hello BrassMonkey,

 

Thank you for getting back to me and sorry about the confusion on my duloxetine if that is what I need to clarify. Because I thought I was tapering I had listed my dates and dosages to keep for the record. 

 

Here's an udpated recent history.

 

 

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Guilietta

Hello BrassMonkey - I accidentally pressed send before completing the message...

 

2 minutes ago, Guilietta said:

Thank you for getting back to me and sorry about the confusion on my duloxetine if that is what I need to clarify. Because I thought I was tapering I had listed my dates and dosages to keep for the record. 

 

Here are my current meds:

 

12/18/2018 - Duloxetine 20 mg quit CT; 9/20/2018 reinstated duloxetine 20 mg following CT duloxetine 20 mg ~June 2018

2000   Clonazepam 2 mg – continued to the present

2000   Gabapentin 1000 mg – continued to present

2015   Lamogrigine 600 mg ER – continued to present

2019     Crestor 10 mg (statin)

2014      Lisinopril 2.5 mg – continued to present (hypertension)

 

Many thanks,

 

Guilietta

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Guilietta

Hello ShiningLight,

 

Setting goals for social activities makes great sense - going to social events alone takes a big push (think traveling into the city to hear the symphony - I love classical music) .I had not thought of social goals in the same way I had thought of setting a work goal.

 

For some reason it much easier to get out in the morning than in the afternoon (let alone evenings) and I have no idea why this is. I know that we have more will power in the morning than in the afternoon (an executive function thing) - maybe that is it?

 

11 hours ago, ShiningLight said:

It's a self-perpetuating cycle, in both directions ie improvement leads to more improvement, and worsening leads to more worsening.

 

I am working on positivity now - so that when I take these incremental steps - remembering to document them may be a good idea. 

 

Particularly since the WD in December - I am less inclined to push myself to go out because I don't know when symptoms (and what they will be!) will rear their ugly little faces. Being on your own makes everything more challenging so it is an even bigger accomplishment.  As you said incremental progress is a huge win!

 

I hope you enjoy your weekend - girl's night out I think? Awesome.

 

Thank you for your support and helpful suggestions! 😀

 

Guilietta

 

 

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Carmie
On 9/19/2019 at 11:25 PM, Guilietta said:

 

Thank you Baxter and Rosetta for the kind words of support. For some reason I didn't see them until now. 😕

 

A few things  are bothering me and I wonder if you or anyone can advise - and how have you coped -

  • Coping and improving with anhedonia an lack of motivation (overwhelming laziness?) in usual activities and habits  as well as things I really want to do.  
  • These feelings and lack of interest in usual things that bring me some enjoyment lead me to fear falling into a state of depression - and that is frightening.
  • I wonder if the inadvertent (and likely) CT has put me at risk for depression and how I can overcome it.

Thanks,

Guilietta

 

 

 

Hi Guilietta, 

 

Yes, anhedonia is certainly something that affects most of us on here. I try and make myself still do the things I would normally enjoy even if I can’t feel the joy behind them. I love taking photos, so I take lots of photos when I’m out and about. That in itself gives me something to do when I’m stuck at home, as I can edit them. Having things in my calendar to look forward to is a coping strategy that helps me heaps. I don’t make it to everything, but just knowing that there are future events boosts my spirits. 

 

Anhedonia doesn’t stop me from going out and doing things. What stops me most of the time is my illness ( I have CFS), I spend lots of time in bed. Actually, I can barely stand up this morning, so it looks like a morning, or day, in bed for me. 

 

I hope you manage to see a symphony. I went to the ballet a few weeks back to see Romeo and Juliet, the ballet was great and the classical music accompanying it was beautiful. I can’t enjoy things thoroughly though, I’ve lived with bad brain fog for 25 years from my illness. Everything feels surreal, it’s like I’m looking through molasses. I guess I’ve just learnt to accept it. Withdrawals on top of it now just bring it up a notch even more. 

 

Sending you hugs🤗

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Guilietta

Dear Carmie,

 

Thank you for your thoughtful message and telling me about yourself and your coping strategies. What a tough time you have of it - and have passion for photography (when you can get outside) and edit (when you are inside).  am sure you are very proficient! If you post them online - then we could take a look at your artwork. But to me homest - I can see that creating a webpage would be a lot of work, figuring out what to do, how to do it, organzing,etc. I don't think I'd want to go down that road.;)

 

I have trouble remembering things - unless it is long-term when I have committed things to memory - not easy with short and working memory limits (epilepsy, medication and related issues) - when I go to a movie or something with a feew people - they will be talking about pieces of it - and I nod because I don't remember the big picture well. I am better in the moment. Scrolling up and down the pages and navigating the site is hard for me - so I probably ressate things!

 

Romeo and Juliet is lovely - I hope you didn't have a long travel to see the ballet - which I also love. I watch ballet on youtube as it doesn't cost. And the seats are great! I can't afford to see everything....I travel to Boston - and the parking is atrocious. If you find a decent garage -on a Sunday afternoon (I only go to matinees) - it's $15 to park for 2-3 hours.

 

I understand Australia is an absolutely gorgeous place. How nice you live there. Are you a native? I am a native of New England but have lived in northern Virginia and Southern California (the last two before I started my rollercoaster of treatment on ADs).

 

Feel better. 🤗

 

Big hug,

 

Guilietta

 

 

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ShiningLight
2 hours ago, Guilietta said:

I have trouble remembering things - unless it is long-term when I have committed things to memory - not easy with short and working memory limits (epilepsy, medication and related issues) - when I go to a movie or something with a feew people - they will be talking about pieces of it - and I nod because I don't remember the big picture well. I am better in the moment.

 

 

I have this too

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Guilietta

Hello @brassmonkey

 

I hope you are well.

 

On 9/19/2019 at 8:10 PM, brassmonkey said:

We really need to know what medication you're talking about here.  There a several different ones mentioned in recent posts and the one that your signature says you are tapering your post says you CTed last year.

 

Is my information clear?

 

On 9/20/2019 at 10:19 AM, Guilietta said:

Here are my current meds:

 

12/18/2018 - Duloxetine 20 mg quit CT; 9/20/2018 reinstated duloxetine 20 mg following CT duloxetine 20 mg ~June 2018

2000   Clonazepam 2 mg – continued to the present

2000   Gabapentin 1000 mg – continued to present

2015   Lamogrigine 600 mg ER – continued to present

2019     Crestor 10 mg (statin)

2014      Lisinopril 2.5 mg – continued to present (hypertension)

 

Thanks so much,

 

Guilietta

 

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brassmonkey

Hi Guilietta-- been having a very busy weekend what with house guests and all.  Yes, that really helps to show what you are currently taking.  But it doesn't clarify which drug you were having the blood concentration tests for and had the questions about.

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Guilietta

Hi BrassMonkey. Sorry about the lack of clarity. 😕  I  really appreciate any guidance you can give and know you help many others. Thank you.

 

The drug I need help with is duloxetine/cymbalta (compounded liquid).   It looks like I may have CT'd from 20 mg capsules when I transitioned to a compounded liquid in December 2018. 😭 The drug was compounded so I could taper wtihout counting beads.

 

Labwork indicates I have undetectable level of duloxetine in my bloodstream (<0-5 ng/mL. Therapeutic range is 60-120).  I am taking 9 mg/3 ml a day so most of the dulox compound isn't being absorbed.

 

Also  - I did a CT from dulox 20 mg capsules in May/June 2018 (per previous MD). I reinstated in September following panic, agoraphobia, etc., etc.

 

I continue to have a lot of symptoms (which I can provide).  I want to minimize further stress on my nervous system and facilitate healing.

 

The MD proposes putting me on 5 mg (I haven't asked why - other than he wants to get some in my system). I haven't responded to his email.  I don't know if reinstating is wise and if so how much.

 

Thanks,

Guilietta

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