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gdsequoia: Quadriceps cramps and eye accommodation problems [Paroxetine, Abilify]

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gdsequoia

Hi!

 

I will keep this post pretty plain for now, as my WD symptoms (the pains, mainly) make it hard to even use a computer for long.

 

I will also try to make a short "signature" version of my history later today.

 

When I was signing up, I was asked to provide a history of my case. I'm gonna paste it below. So, here goes.

 

----------------------------------------

 

All of the following changes/switches were done in 1-2 weeks each (except where otherwise noted). I.e., very quickly (which is bad).

- Started Amisulpride 600mg and Escitalopram 30mg in 2014 for OCD. 
- In 2017 Amisulpride dose became 500mg. A few months after that, I developed tardive dystonia (cervical).
- In 2018 autumn switched from Amisulpride to Abilify (about 15mg), to combat the dystonia. Indeed the movements stopped, but I was very sleepy (was taking lots of baclofen too). So I moved back to Amisulpride 500mg.
- In 2019 february made another attempt at switching to Abilify (22.5mg). It was successful. But since then, I gradually developed disabling joint pain.
- In 2019 (around July) reduced Abilify to 15mg, and nothing much changed.
- In 2019 September switched from Escitalopram to Paroxetine (40mg) to combat the joint pain. Got a slight improvement in joint pain. Since the first day of Paroxetine, I began having eye problems.
- About 3-4 weeks later I reduced Paroxetine to 20mg and Abilify to 7.5mg. Nothing much changed.
- About a week later, I reduced Paroxetine to 15mg and Abilify to 3.75mg. Finally the joint pain was almost gone.
- Soon, the joint pain reappeared so I started taking 4x3.75mg Abilify and since then, my joint pain is quite minor.
- About 3-4 weeks later I switched (Cold Turkey) back from Paroxetine to Escitalopram (7.5mg) to combat the eye problems. That did not help, and I started getting disabling muscle cramps (in quadriceps). Then I found the "paroxetine withdrawal support" FB group.
- About 4 days later, I switched (Cold Turkey) back from Escitalopram to Paroxetine (15mg), because of the cramps and because of what I learned from the FB group.
- That didn't reduce the cramps. So I increased Paroxetine back to 20mg, which did help somewhat.
- 1-2 weeks later, we're at the present moment (24 Dec 2019).

 

----------------------------------------

 

I'll be happy to communicate with you guys in order to help one another in this journey! :)

In Facebook I'm actually afraid to help other people, because Facebook is too addictive with the "likes" and "loves" etc. Especially for lonely people like me. I hope this forum will be different in this regard! :)

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Gridley

Welcome to SA, gdsequoia.  I'm sorry you're suffering.  

 

We are a site for helping members to taper off psychiatric drugs and and to deal with withdrawal from them.  We'll be happy to help you in any way we can.

 

As you probably already know, you are in withdrawal and your system is very sensitized from the many dose changes and cold switches.  If it is possible, I would strongly urge you to make no further changes at this time in order to allow your system to stabilize.  

 

Joint pain, muscle cramps and eye problems are common withdrawal symptoms.  Joint pain,, muscle pain and visions are also possible side effects of both Paroxetine and Escitalopram, making it difficult to pinpoint the cause(s) of your symptoms.  Side effects go away soon after stopping the drug, but withdrawal symptoms last quite a while.

 

 
 
When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  
 
These explain it really well:

 

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 
When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

 

 

Add in one at a time and at a low dose in case you do experience problems.
 
This link allows you to post your drug signature:
 
 
This is your Introduction topic, where you can ask questions, post updates and connect with other members.  We're glad you found your way here.
 
 
 
 

 

 

 

Edited by Gridley

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gdsequoia

Thank you so much! This website is great! Are you guys paid for this, or are you volunteers? Bravo either way.

Quote

> If it is possible, I would strongly urge you to make no further changes at this time in order to allow your system to stabilize.

Yep, that's what I'm planning as well. Would a month be enough before I go further?


I checked the Dr. Glen Mullen symptoms PDF. Looks a bit advanced for me (other than as a "is it possible that my new problems were caused by my recent dose change" list of symptoms). Not sure it'll tell me anything I didn't already know (if I start filling the table daily).


I did start taking "Doctor's Best chelated magnesium glycinate" yesterday, as I had it laying around the house from before. Other than that, in the past 12 months I have been taking 250mg of a modified-release two-phase Mg Oxide, but when I tried to raise it to 500mg, I got stomach aches (but it was quick in removing the quad cramps, thank God).

Not sure the Mg Glycinate will reduce the cramps. Seems it's not absorbed very quickly: today I had to (again) apply some Voltaren Forte to my thighs, in order to be able to go to the grocery store.

In the magnesium thread, I found this:

Quote

> [...] nerve-damage pain was eased [...]

Does that imply that WD can cause nerve damage? And, relatedly - I do have nerve-damage symptoms (e.g. numbness, tingling); I take 1000mcg vitamin B12 for them. The B12 works wonders for my joint pain too. Wonder if I can drop the B12 in favor of the above-mentioned Mg Glycinate. I have been B12-deficient before (probably due to a 6-month period in which I was a vegan and raw-foodist).

About fish-oil: I'm a bit afraid to take it, because it's an anticoagulant. When taken with antidepressants, it can cause GI bleeding, no? [same question goes for the magnesium]
If it's safe, I plan to start taking it. Well, I plan to get it by eating roasted { salmon, whitefish } and canned tuna instead of a supplement.
Note to self: it can give me clearer vision.

I noticed you're taking probiotics. Do you use them for constipation? I'm using Psyllum Husk for the Paroxetine-induced constipation but I'm afraid it can decrease the absorption of my pills.

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Gridley
1 hour ago, gdsequoia said:

, or are you volunteers

We're all volunteers.

 

1 hour ago, gdsequoia said:

Would a month be enough before I go further?

 

You've made a lot of changes.  I would let your system stabilize for at least three months before making any further changes.  What changes are you considering?  If you're considering a taper of the Paroxetine, we recommend tapering no faster that 10% of current dose every four weeks.

 

Why taper by 10% of my dosage?

 

Tips for tapering off Paxil (paroxetine)

1 hour ago, gdsequoia said:

but when I tried to raise it to 500mg, I got stomach aches (but it was quick in removing the quad cramps, thank God).

 

High doses of magnesium can cause stomach problems and diarrhea.

1 hour ago, gdsequoia said:

Does that imply that WD can cause nerve damage? And, relatedly - I do have nerve-damage symptoms (e.g. numbness, tingling);

WD definitely affects the nervous system, but the damage is not permanent.  Tingling and numbness are very common WD symptoms.

 

1 hour ago, gdsequoia said:

About fish-oil: I'm a bit afraid to take it, because it's an anticoagulant. When taken with antidepressants, it can cause GI bleeding, no? [same question goes for the magnesium]

I've not heard of this being a problem, but if you're concerned you can get your fish oil by eating fish, as you said.  Epsom salt baths are a good way to get magnesium.

 

1 hour ago, gdsequoia said:

I noticed you're taking probiotics. Do you use them for constipation?

No, I take them for a non-WD-related condition.

 

1 hour ago, gdsequoia said:

I'm using Psyllum Husk for the Paroxetine-induced constipation but I'm afraid it can decrease the absorption of my pills.

This is a concern.  Psyllium can affect the absorption rate of some drugs.

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gdsequoia

Thanks!

 

What changes are you considering?  If you're considering a taper of the Paroxetine, we recommend tapering no faster that 10% of current dose every four weeks.

 

I was considering a simultaneous taper of Paroxetine and Abilify, at the rate that you described.

 

But I'll do my best to wait 3 months first (as you said).

 

Also, these days I've been (fairly) quickly reducing the following:

- D3

- Benfotiamine [completely stopped]

- B6 [completely stopped]

- B9 [completely stopped]

- B12

- Tolperisone

- Biperiden

- Melatonin [completely stopped]

- Mint+Hawthorn+Valerian [completely stopped]

- Turmeric Golden Paste [completely stopped]

 

Those are not very strong chemicals (I think), so I hope it's ok.

 

> High doses of magnesium can cause stomach problems

 

Do these problems go away when I stop/reduce the Magnesium, or are they more persistent/serious?

 

I'm planning to take 4x100mg of the DrBest chelated magnesium.

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gdsequoia

Update:

- Stopped Doppelherz Aktiv Controlled-release Magnesium Oxide 250mg

- Started Doctor's Best Chelated Magnesium Glycinate/Lysinate 4x100mg

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gdsequoia

Mod note: merged with main introduction, orginally titled Tapering Tolperisone?

 

[Trade names: Biocalm, Muscodol, Mydeton, Mydocalm, Mydoflex, Myolax, Myoxan and Viveo]

 

Tolperisone is a muscle relaxant that's banned in the US. In Europe, it's now only prescribed for some very narrow diagnoses, which do not include tardive dystonia (which is what I'm using it for). Well, it works much better than baclofen for me.

 

I wanna try dropping it. Anyone know how/whether to taper it? 2 doctors told me it has no withdrawal fx, but as we know, this may not be true.

Edited by manymoretodays
see mod note

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Gridley
5 hours ago, gdsequoia said:

 

I was considering a simultaneous taper of Paroxetine and Abilify, at the rate that you described.

We recommend tapering only one drug at a time.  Otherwise, there's a problem, you won't know which drug taper is causing it.  We recommend tapering the activating drugs first (in your case, Paroxetine), leaving the sedating drug (Abilify) to act as a buffer to taper later.

 

Taking multiple psych drugs? Which drug to taper first?

 

6 hours ago, gdsequoia said:

 

> High doses of magnesium can cause stomach problems

 

Do these problems go away when I stop/reduce the Magnesium, or are they more persistent/serious?

 

 

They go away when you stop.

 

I see you've been posting questions in other sections of the site.  If the question is about your personal situation, you should post it here in your Introduction section.  That way, all the information is in one place.

6 hours ago, gdsequoia said:

 

I'm planning to take 4x100mg of the DrBest chelated magnesium.

 

That's a high dose.  I would start lower and work up as you see how your body responds.  Start with 100mg and see how that does.

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gdsequoia

Thanks again.

 

Quote

I see you've been posting questions in other sections of the site.  If the question is about your personal situation, you should post it here in your Introduction section.  That way, all the information is in one place.

Oh, ok. I tried to edit my tolperisone post to remove the personal-situation aspect, but I didn't find an "edit" button.

 

The other one I'll put here in a minute (but I don't know how to delete the original post).

 

-----------

 

In 2016-2017 I was having lower back pain (due to improper, too-intense, self-prescribed exercises, after being sedentary for years). A physiotherapist showed me a simple set of about 10 exercises, and they did fix my pain!

 

For example:

- bridging

- writing the numbers 1-10 with a single (outstretched) leg, then with the other

 

Currently I'm having Quadriceps (inner thigh) cramps (likely caused by WD and/or Tolperisone) and some lower back pain. My recent experience (before this) was that when I do the above two exercises, my cramps get a lot worse, and stay like that for 2-3 days.

 

How do I do such exercises without exacerbating the cramps? Or maybe I should switch to other exercises?

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Gridley
21 minutes ago, gdsequoia said:

I do the above two exercises, my cramps get a lot worse, and stay like that for 2-3 days.

 

How do I do such exercises without exacerbating the cramps? Or maybe I should switch to other exercises?

 

We don't have any particular expertise in exercise.  Strenuous exercise is often activating to those of us in withdrawal.  We recommend a daily gentle 30-minute walk in nature.

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gdsequoia

Mod. note: new topic moved back to introduction from tapering for this new member

Original title of:  Safety of taking pill fragments hours after they've been taken out of the blister pack

 

Let's say I'm taking drug "Foo". A single pill, once a day. Then, to make the plasma concentration curve smoother, I want to split my dose into two parts. So, in the morning, I take a single pill out of the blister pack, and break it into two with a pill cutter. In the process, I touch the pill and the pieces with my bare hands. I drink one piece immediately, and the other - in the evening.

Or I break it into 4 pieces and then take them evenly spaced from morning to evening. Same principle.

I'm aware that a pill cutter is less accurate than water dissolution. I'm also aware that the official SA tapering instructions don't mention my idea. And yes, many meds are officially supposed to be taken only during a certain time of the day (e.g. in the morning, to avoid disturbing your sleep). Other than that, any downsides to the above procedure?

Specifically, I'd like to know:
- whether the pill starts quickly degenerating/oxidizing once it's out of the blister pack and it's been touched by my hands
- whether cutting the pill makes it start degenerating even more quickly

TIA!

Edited by manymoretodays
merged, title added

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manymoretodays

Hi gdsequoia and welcome,

I just moved the above new post of yours from tapering, back here to your introduction.

Did you look up "Foo" drug with it's name to try to answer your own question?  And then, not all drugs are meant to be split throughout the day for other reasons than disintegrating or degenerating.  Half lifes, plasma concentrations, and the like.  Did you just start splitting "Foo" drug into 4 doses through the day?  And why?

 

It might help to know which of your drugs you are referring to.

 

I'm seeing from your signature and initial post, that you have already been making some pretty major drug changes on your own, CT's and cold drug switches.  Some of your drugs we are less familiar with too.  So if you can help us get to know you, that will help us to better see how we might help you.

 

Could you post here, right here on your introduction, a list of types/of sorts, for just one day to start.  On the left, note the time, on the right note all drugs taken, by name, and dose.  Please include any supplements on the right as well, and brief descriptions of symptoms.  I'm really confused as to what you take and when.   And I'm not quite sure what you want help with first.  Perhaps do one post just listing times on the left and drug name and dose on the right.  Then try one, with the drugs plus the other information. 

 

Just for now, as you get familiar with our site and to help us get familiar with you, please just post here, on your introduction page.  And be patient with us as well.

Try and hold real steady too, for awhile now with your drugs.  Making too many changes, too fast could just make symptoms worse.  Help us get a better picture of you and your situation.  I hope that's okay with you.

 

Thank you.

Welcome again.

L, P, H, and G,

mmt

 

Edited by manymoretodays
additional

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gdsequoia

Thanks for the warm welcomes! Despite my own intro being a bit imperfect :)

First off, I had posted in the Tapering subforum, since I thought the question (and its answers) might be interesting to many people. I tried to write it in a non-personal-situation way, hence the "Foo" placeholder name.

I'm used to doing things like that - a habit that comes from the StackExchange family of sites.

Quote

Could you post here, right here on your introduction, a list of types/of sorts, for just one day to start.

Sure!

09:00: propolis tincture (20 droplets), methylcobalamin sublingual (1000mcg), Abilify (3.75mg), magnesium glycinate-lysinate-chelate (100mg)
12:00: tolperisone (150mg), paroxetine (20mg), cholecalciferol (400 IU), magnesium glycinate-lysinate-chelate (100mg)
15:00: propolis tincture (20 droplets), biperiden (1mg), Abilify (3.75mg), magnesium glycinate-lysinate-chelate (100mg)
18:00: biperiden (1mg), Abilify (3.75mg), magnesium glycinate-lysinate-chelate (100mg)
21:00: propolis tincture (20 droplets), Abilify (3.75mg)
Some random time before a meal: 2 teaspoons of psyllium husk

 

And now a description of the reasons I take each drug/supplement:
- propolis tincture: Against my gingivitis
- methylcobalamin sublingual: Against my vitamin-B12 deficiency
- Abilify and paroxetine: Against my OCD
- magnesium glycinate-lysinate-chelate: Against my quadriceps muscle cramps and against my magnesium deficiency
- tolperisone and biperiden: Against my cervical dystonia
- cholecalciferol: Against my vitamin-D deficiency
- psyllium husk: Against my constipation

 

That is all that I take.

Quote

Did you look up "Foo" drug with it's name to try to answer your own question?

Well, I'll confess that I didn't. I didn't expect to find an answer. I'll try looking it up today/tomorrow.

Quote

Try and hold real steady too, for awhile now with your drugs.


I agree to try and hold steady with Paroxetine and Abilify for at least a month, maybe 3 months.
About tolperisone and biperiden - I can agree to hold steady with those two for a week (or two weeks), so you can get to know me in the meantime. (btw, tolperisone can't produce WD problems AFAIK).
I take no other drugs.

Quote

And I'm not quite sure what you want help with first.


Well, we could start with:
- How to take Abilify split into 4 doses (without breaking the bank)

Quote

Just for now, as you get familiar with our site and to help us get familiar with you, please just post here, on your introduction page.  And be patient with us as well.


Sure! Thanks again.

Quote

Did you just start splitting "Foo" drug into 4 doses through the day?  And why?

Foo is Abilify.

Long story short: I believed that would let me live without joint pain. And it did :)

Now the full story:

I didn't know about SA.org, nor about the 10% nonlinear tapering recommendation.

I was doing a rather quick downtapering of Abilify. I was doing it without consulting with anyone. The reason was that the joint pain was completely disabling. I couldn't even walk 50 meters to the grocery store.

I had gone from 15mg to 3.75mg in the space of 1 month. That made the joint pain disappear for around 5 days. This told me that my joint pain had been an Abilify dose-dependant side-effect. Then the joint pain reappeared, which I interpreted as a sign that I had gone too low in my Abilify tapering and that I was having WD symptoms (Abilify does have a joint-pain WD effect, according to the net). I could then have reinstated a 7.5mg (once-a-day) dose, but I didn't want to: my experimentation had shown that "7.5mg once-a-day" gives me joint pain. So I tried taking taking 3.75mg at morning and 3.75mg at noon. Result: I had no joint pain in the first half of each day. But in the evenings, the joint pain came back. So I added an early-evening 3.75mg dose, and finally had to add a late-evening 3.75mg dose. That way, I've been joint-pain-free for the last month or two, and very happy :)

On request, I can give you a mathematical explanation of why this works for me.

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manymoretodays

Hi gds,

 

And no.....on any mathematical explanations right now.....that would be a bit too confusing for me, at the present.  Thanks for the offer though.

And  thanks for ID ing "Foo" drug.  And I agree with you, it may be a great idea to do some form of taper with the Tolperisone.  I honestly haven't had time to look it up yet.  Doctors and drug manufacturers often don't know, on WD .  And sometimes we do need to look out for ourselves quite a bit, when it comes to drugs.

 

I just wanted to leave you this link today  Tips for tapering off Abilify(aripiprazole)

You may have already found that.  It's a good place to find out more about what we have, general information, already on Abilify.  I've just never heard of it being used for joint pain, or being used in split doses, like you are.  Interesting.....

 

All for today.

Almost into the year 2020!  Seems wild.

 

L, P, H, and G,

mmt

 

 

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gdsequoia

Thanks for keeping up with my topic, even around the holidays! :)

 

Quote

Doctors and drug manufacturers often don't know, on WD

 

Yep. Absolutely true.

 

I researched tolperisone (for WD stuff) pretty thoroughly; in all the places/search terms that I could think of, and found nothing on the topic. So I'm pretty confident in the quick tolperisone taper that I've been doing.

 

As I said though, I can stay at the above-mentioned tolperisone dose (150mg once a day) for 1-2 weeks, since you asked me to :)

 

Thanks for the link.

 

Quote

I've just never heard of it being used for joint pain, or being used in split doses, like you are.

Sure. When I was having that debilitating joint pain, I had to improvise fast, in order to "survive" so to speak. And that's when my math-and-programming education came in handy.

 

Please let me know when you need more info from my side! :)

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gdsequoia

I rewrote my sig. Made it much clearer (I hope) :)

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manymoretodays

Okay.  Good job.  Don't ask me why I am still up.....U.S. mountain time late!  Or early.

 

I want you to try to access this site:  Drugs.com- Drug Interactions

Plug in your drugs/meds and then, if possible do a copy and paste right here.  On your introduction.

 

At the top, of the page at that link......you'll also see where you can just do a general search, on just about any medication/drug.  Handy reference to have. 

Let's check your drug interactions now.

 

and Zzzzzzz.

L, P, H, and G,

mmt

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gdsequoia

Drugs.com doesn't know about tolperisone (which makes sense, as that drug is not approved in the US). Also magnesium lysinate and propolis are absent there.

You can see the results here (I think this link should be nicer for you than copy-pasting)

-----------------

Here's a list of the things that may apply to me:

- cholecalciferol + magnesium glycinate:

    -> "may increase the risk of hypermagnesemia"
- PARoxetine + ARIPiprazole:
    -> "PARoxetine may increase the blood levels and effects of ARIPiprazole."

 

And a list of the things that do apply to me:

- biperiden + ARIPiprazole:

    -> "blurred vision"
- PARoxetine + ARIPiprazole:
    -> "muscle spasm"
    -> "increased pulse"

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manymoretodays

Good morning gds,

I  found a similar compound to tolperisone, called Losartan/hydrochlorothiazide(this is the one that was recalled in the U.S., due to cancer causing contaminants found in it)So.......take a look here (not sure anymore if there is any relation between tolperisone and Losartan, as far as how they work, etc.  I might have gotten mislead in my searching. mmt)

 

12 hours ago, gdsequoia said:

cholecalciferol + magnesium glycinate:

    -> "may increase the risk of hypermagnesemia"
- PARoxetine + ARIPiprazole:
    -> "PARoxetine may increase the blood levels and effects of ARIPiprazole."

 

And oooh, it may well be a CytochromeP450(CYP450), liver enzyme system metabolism conflict, interaction then with the paroxitine and aripiprazole.  Resulting in higher levels of aripiprazole.  Significant stuff with polypharmacy. 

 

And it might be a good idea to go easy with that chelated magnesium then......see if you can get a good relax effect with less.  And be sure you space your usage throughout the day.  Of your mag glycinate.  Meaning you could do split doses, for a total daily intake of 400mg.  You are doing okay, as far as any GI(gastrointenstinal) woes with it ,thus far?

Here's that link again:  https://www.survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

We don't recommend Calcium and Magnesium be given together, as they compete for absorption.  And I thought, I may be wrong......that the Calcium decreased the absorption of Magnesium.  Hmmm.  Some of the links in the first post are not redirecting to the specific posts in that 14 page topic.  I'm certain, the Ca and magnesium interaction is stated better, somewhere in there.  Doh!  I think I might have said that backwards.   Sorry about that, I'm editing here. 

Or....... if I were you, I might  just take Vitamin D3 instead of the cholecalciferol?  I take some gtts(drops), which are relatively inexpensive, when the daylight/daytimes are short.  I think that tablet forms and perhaps even sublingual forms are available.

https://www.survivingantidepressants.org/topic/39-vitamin-d3-cholecalciferol-or-calcitriol/

And okay.....solly, while I work through all of this.....cholecalciferol IS D3!!!!!  And you are not taking any Calcium supplements.  I think you are just fine.

 

I'll try and get creative with a copy and past and then editing it all down, when I get a chance, or maybe you might feel inclined to do so.  It makes it nice, to have a nice post of it all, with some color coding right here in your introduction.  And then I'll ask for some further input for you too.  We do have a stellar team of mods and administrators here, if I do say so meself.  Varying gifts.  I like to pharmaco nerd myself on occasion(not a pharmacologist or psychopharmacologist, or doctor though).  Maybe like your math interest.  Nerd is a U.S. term.......hopefully it translates kindly.  I do like to go all creative too alot.......write, paint, practice music, tell jokes and all too.  Sometimes hard to balance my dual sides.  .......anyway blah, blah, blah......a bit chatty, aren't I?  And no excuse, I got a solid 6 hours and am looking at some lovely snow this morning.

 

And since the tolperisone(lorsartan or hydrochlorothiazide) is a Na(sodium) channel blocker......I wonder if rapid taper could result in seizures??  I'm going have to do further pharmoco sleuthing on this.  How fast have you been tapering? The tolperisone.  And have you been going on a % decrease of some kind from each previous dose?  Keeping notes and all?  Notes help you to see patterns with tapering drops and know what to expect.

I was able to do 2 week interval tapers of 10% with my Trileptal/oxcarbazapine, well tolerated, I knew my symptoms and when, and got off of it safely without further harm.

 

Okay.....be safe, go slow, gather information.  No need to rush to any finish lines here.

 

L, P, H, and G,

mmt

 

 

Edited by manymoretodays
doh, clarity..... :-) strikeout edit at top!!

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gdsequoia

Morning! (well, evening here :):) )

Thanks for the chemistry sleuthwork!

Quote

> I  found a similar compound to tolperisone, called Losartan/hydrochlorothiazide

Could you please expain the similarity you found (in layman terms)?

(slightly irrelevant note: My grandma's been taking that L/h compound for years now, for hypertension)

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> Resulting in higher levels of aripiprazole.

Yep, pretty sure this does happen for me.

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> And it might be a good idea to go easy with that chelated magnesium then......see if you can get a good relax effect with less.

Yeah, some days I go with just 3x100mg - depends on whether, in the evening, the quad cramps occur or not.

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> And be sure you space your usage throughout the day.

Definitely. I'm taking 100mg, 3-4 times, spread throughout the day.

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> You are doing okay, as far as any GI(gastrointenstinal) woes with it ,thus far?

Yep - when I take the magnesium after a meal, I'm fine. And that's what I do.

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> cholecalciferol IS D3!!!!!

Ah, yes. I was thinking that cholecalciferol is a *subtype* of D3, but you're right, here (I just looked it up).

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> I'll try and get creative with a copy and past and then editing it all down, when I get a chance, or maybe you might feel inclined to do so.

Definitely, I would do that. Just still not sure that the L/h compound is relevant here (as I wrote above).

"Nerd" is a well-known term in my circles... I used to like to call myself a geek and amateur pianist. Now I tend to self-identify as a JC follower primarily... well, in life, we go where the wind blows us to :)

Well, I did, by necessity, learn the ABCs of pharmacy in the past year... which is a nice thing to know about.

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> I'm going have to do further pharmoco sleuthing on this.

I appreciate the work you're doing!

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> How fast have you been tapering? The tolperisone.  And have you been going on a % decrease of some kind from each previous dose?  Keeping notes and all?  Notes help you to see patterns with tapering drops and know what to expect.

I've been tapering tolperisone very fast (and linearly). In the space of about 2 weeks, I went from 3x150mg to 2x150mg to 1x150mg. Haven't felt any WD effect due to that. As I wrote in an earlier post, I've researched tolperisone tapering/WD pretty thoroughly (though I don't claim to be qualified to do that).

I do keep very brief notes - mainly, on which day I reduced/increased which med, from what dose to what dose. I rarely write down symptoms-related info. I write down too much stuff anyway :)

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manymoretodays
9 hours ago, manymoretodays said:

I  found a similar compound to tolperisone, called Losartan/hydrochlorothiazide(this is the one that was recalled in the U.S., due to cancer causing contaminants found in it)

 

7 hours ago, gdsequoia said:

Could you please expain the similarity you found (in layman terms)?

 

Gadzooks gds, and Yikes.

I'm trying to back track on my previous searches, now, and may well be in error here.  When I typed in FDA recalls tolperisone, for some reason losartan comes up.  I thought it did somewhere else too, and now not so sure.  I am finding plenty on tolperisone, how it works, etc. and it's maybe I'm just getting led to alternatives to tolperisone, instead of anything even remotely like it.

 

So......we are probably fine just leaving it out of the interactions check(not a lot of significant potential for interactions anyway).  It's been around since 1960.  I was trying to sleuth out why it was not available or used in the US anymore.  The 2 may be totally different......the lorsartan and tolperisone.  So much for late night searches.

 

Anyway.....good old Wikipedia has the scoop on safety concerns with it, scroll down to contraindications and cautions here:  https://en.wikipedia.org/wiki/Tolperisone

Also mentions the Na and Ca ion modulation.  The Na ion stuff was what kind of worried me, on if you go too fast with it.

 

So.......scrap Lorsartan for now.

 

So anyway, I'll go back and try my best to simplify again, to share the information you've given so far....... and ask for more input.  gdsequoia, do you want our input....... into what seems to be a predetermined plan of tapering???

 

  I'll check on back, for your answer, ASAP.   I mean I can kind of get how you would want to get off tolperisone, as it has a bunch of safety concerns and all.  But then you are changing the apiprazole dosing at the same time, or at least that's my take........maybe you did most of these changes before you even got here?   It just kind of goes against some of harm reduction protocols and practices.

 

Anyway.....I'll return ASAP, and ask for more input.......I just want to be able to organize some of your stuff more, before I do that.  And I've gone a bit squirrely brained tonight.  So back to it, soon as I can.  Okay? Thanks for getting the lists done with your times and drugs and supplements and doing the interaction check.  Super!

 

I think, you might be getting a little gung ho, and making to many medication changes, and too quickly, and with two many at once.  You have promised to just HOLD though, for now.  Thank you.  Meantime, I've gone gung ho on searches that I can't replicate.  So we are square!  B)

 

Love, peace, healing, and growth,

mmt

 

 

Edited by manymoretodays

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gdsequoia

I'm learning all kinds of new English slang here, hehe :)

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> gdsequoia, do you want our input....... into what seems to be a predetermined plan of tapering???

I do want your input on several specific questions! :)

Currently, my questions are:

1. When it's time to take my 3.75mg of Abilify (I do this 4 times every day), I break the pill into four pieces, I swallow one, and throw the other three into the garbage. This is kinda expensive to do. Can I store the 3 pieces for later in the day, and, thus, spend a lot less money?
2. Can too-fast tolperisone reduction cause WD symptoms? I noticed you said something about Na ions - could you elaborate on that, please?

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> But then you are changing the apiprazole dosing at the same time, or at least that's my take........ maybe you did most of these changes before you even got here?


 

I downtapered aripiprazole from 15mg to 3.75mg (14-23 Nov 2019).
Then I saw I had made a mistake, and uptapered from 3.75mg back to 15mg (approx. 7-12 Dec 2019), except this time, I take it as 4 separate doses.

My last change of aripiprazole dosing was on 12 Dec 2019.
I started my tolperisone-taper on 18 Dec 2019.
I found SA.org on 24 Dec 2019.

So, as you see, currently I'm tapering *only* the tolperisone. :)

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> I think, you might be getting a little gung ho, and making to many medication changes, and too quickly, and with two many at once.

I have been doing that, as I didn't have much choice. I was in such a bad condition, my father had to take care of me (and I'm in my twenties). I was under pressure to get better, fast. And I can happily say that I did! :) Thank God.

My other excuse is that, when I was making these changes, I hadn't heard of SA or the 10%-rule.

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> You have promised to just HOLD though, for now.

Yep!

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manymoretodays

Apologies gds, with a smile though,

Happy to continue American English slang education, mmt style.  I'm pretty topsy turvy, oh no, there's another one, this holiday season.......in a positive, good enough way though.  Messing up my words a bit sometimes too.  Like I said today......"I need to get the flashlight in the batteries".  B)  I got a turn signal blinker fixed and now the dashboard lights have gone out.  Positive intentions to my car and the mechanics when I get it back in the shop on Thursday please!

 

I'm going to be brief tonight, just put you in for some consultation. 

Meantime, I'll hold on addressing some of your questions above.  I'll be back.

 

L, P, H, and growth,

mmt

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gdsequoia

Thanks!

 

Here's an interesting pdf I found:

 

http://www.japi.org/february_2010/Article_17.pdf

 

It speaks in terms that I think you will understand; at the same time it's pretty brief.

 

An interesting quote:

Quote

Tolperisone differs from other myotonolytic agents in its pharmacological properties, which mediate muscle relaxation without concomitant sedation1 or withdrawal phenomena

 

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manymoretodays

So why have you chosen to taper off the tolperisone first, gds?  It could be a good buffer, of sorts, while you begin to get off the paroxetine or aripiprazole.  It sure sounds like the dystonia and joint pain was a result of the neuroleptics/AP's(amisulpride and aripiprazole) adverse reactions, either that or the WD phase of them, or both.

Did you find out why the U.S. pulled it?  I was searching for that, without success.  Anaphylaxis is not a great side effect, nor were some of the others mentioned.  All the psychotropics have ugly s.e.'s though, and long term usage concerns to boot.  (man, I use a lot of slang)

 

Thanks for the article.  I liked it.  I do like trying to pull together some of the more complex stuff too.  Just not great at confidence.  Yet.

 

L, P, H, and G,

mmt

Edited by manymoretodays

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gdsequoia

Glad you asked :)

This autumn, I've really been tapering everything simultaneously - aripiprazole (15->3.75mg), paroxetine (40->15mg), tolperisone (450->150mg), biperiden (4mg->2mg) and even the supplements.

This, you can see in my sig.

The aripiprazole PAWD made my joint pain reappear, and the paroxetine AWD caused my current muscle cramps. So, I had to partially reinstate the old aripiprazole&paroxetine doses. (also in my sig). 

Tolperisone and biperiden turned out to be the only drugs that did not give me WD symptoms, so that's why they're at their current low doses. I also do not have any significant dystonia relapse currently, despite their low doses.

Note: I know that I should be tapering just one thing at a time. When I was doing the "everything-taper", I didn't have that info, since I hadn't found SA yet.

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It sure sounds like the dystonia and joint pain was a result of the neuroleptics/AP's(amisulpride and aripiprazole) adverse reactions, either that or the WD phase of them.

Yep. Definitely. When I was reducing the tolperisone, my motivation was coming from the tolperisone leaflet, which mentions "muscle pain" and "limb pain". Also, because I hoped that maybe "less meds" will mean "less interactions" which will mean "less problems".

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gdsequoia
On 12/25/2019 at 4:45 PM, Gridley said:

We recommend a daily gentle 30-minute walk in nature.

Hi again Gridley,

Could you point me to a thread about this?

I'm doing those 30min walks, but I'm gradually increasing the duration, and I wonder if anyone here ever got problems from long walks.

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gdsequoia

Thanks! Activating in the sense of "activating WD symptoms", I suppose? (like how the cramps appeared, in my case)

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Altostrata

Hello, gd.

 

Your recent drug history contains a dizzying number of drug changes in pursuit of one symptom or another. Some of your drug adverse effects have been quite serious.
 

On 12/30/2019 at 1:18 AM, gdsequoia said:

1. When it's time to take my 3.75mg of Abilify (I do this 4 times every day), I break the pill into four pieces, I swallow one, and throw the other three into the garbage. This is kinda expensive to do. Can I store the 3 pieces for later in the day, and, thus, spend a lot less money?
2. Can too-fast tolperisone reduction cause WD symptoms? I noticed you said something about Na ions - could you elaborate on that, please?

 

Yes, you can store the Abilify tablet pieces in a clean, airtight container and use them later.

 

Yes, too-fast reduction of any psychotropic drug can cause withdrawal symptoms. Typically, withdrawal involves some kind of uncomfortable activation.

 

Like @manymoretodays, I am wondering why you're fiddling with the drugs that seem to be working for your dystonia. See Taking multiple psych drugs? Which drug to taper first?

 

Our general approach is 1) establish a daily drug schedule and baseline symptom pattern; 2) make a plan to minimize drugs; 3) systematically change one drug at a time to observe effects of the change; 4) change strategy if observations warrant.

 

Your approach is to change several things at once and see what happens, then make guesses about what drug will correct adverse effects. I do not think the two approaches are compatible. I am at a loss as to what we might do for you.

 

I would ask for your daily drug schedule and symptom pattern, but you seem to be set on your own drug experiments, so carry on.

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gdsequoia

Hello, @Altostrata. Thanks for taking the time to read through my complicated story! And for the thoughtful reply.

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> Yes, too-fast reduction of any psychotropic drug can cause withdrawal symptoms.

Please note that tolperisone is not a psychotropic drug. (dystonia is not a mental disorder - it's a neurological one).

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> Like @manymoretodays, I am wondering why you're fiddling with the drugs that seem to be working for your dystonia.

I began fiddling with them out of desperation - so to speak. At present, I'm in a much more palatable situation, so I will stop tapering the biperiden for now (it has WD symptoms written out in the leaflet).

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> Taking multiple psych drugs? Which drug to taper first?
> > "Sometimes it's clear one drug is causing problems. You might consider tapering that drug first."

Thanks for the link. As @manymoretodays said (and I agree with her), my joint pain is almost certainly coming from the antipsychotic (and/or its withdrawal).

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> I am at a loss as to what we might do for you.

You've already done a lot!

- I started eating fish everyday
- I changed up my magnesium supplement, and this has had an amazing effect
- You recommended to me to stabilize for at least 3 months before making further changes. And I plan to abide by that. Just not sure about the tolperisone yet. (see above)
- You answered my Abilify-splitting question

... and so on.

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> I would ask for your daily drug schedule and symptom pattern, but you seem to be set on your own drug experiments, so carry on.

I'm definitely not set on this. I'd like to stop my own drug experiments. Just not sure I can get my father to agree to this. I need him "on-board", so to speak (I depend on him for many things, since I'm disabled). I've been putting off the discussion with him - but he's already really happy about the changes he's seen since I joined SA.

I went ahead and wrote up my daily drug schedule. (I had previously posted one but now I made it more accurate, and easier to read).

09:00: aripiprazole 3.75mg, magnesium 100mg, vitamin B12 1000mcg
12:00: aripiprazole 3.75mg, magnesium 100mg, tolperisone 150mg, paroxetine 20mg, vitamin D3 400IU
16:00: biperiden 1mg
17:00: aripiprazole 3.75mg, magnesium 100mg
18:00: aripiprazole 3.75mg, magnesium 100mg, biperiden 1mg
Before one or two of my meals: psyllium husk 2tsp
30-60 minutes before every meal: propolis tincture 20 drops

 

I can provide my symptom pattern on request.

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gdsequoia

@manymoretodays

 

Just saw some of your questions that I had missed.

 

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Did you find out why the U.S. pulled it?

 

It seems it wasn't pulled; just not available.

 

https://www.prnewswire.com/news-releases/neurana-pharmaceuticals-receives-notice-of-allowance-of-patents-for-tolperisone-a-novel-skeletal-muscle-relaxant-300464196.html

 

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" Tolperisone has New Chemical Entity status in the US and is ready for Phase 2 clinical studies"

 

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Altostrata
09:00: aripiprazole 3.75mg, magnesium 100mg, vitamin B12 1000mcg
12:00: aripiprazole 3.75mg, magnesium 100mg, tolperisone 150mg, paroxetine 20mg, vitamin D3 400IU
16:00: biperiden 1mg
17:00: aripiprazole 3.75mg, magnesium 100mg
18:00: aripiprazole 3.75mg, magnesium 100mg, biperiden 1mg
Before one or two of my meals: psyllium husk 2tsp
30-60 minutes before every meal: propolis tincture 20 drops

Thanks, your records are in admirable order.

 

How do you feel after taking vitamin B12 each day?

 

Tolperisone is neurologically active, you should assume reducing it may cause withdrawal symptoms. It apparently is processed by the liver enzymes identified by "cytochrome P450 (CYP) isozymes CYP2D6 and CYP2C19", which means it may conflict with other drugs you're taking that are metabolized or inhibit the same enzymes.

 

What you need to do is create a table showing the P450 liver enzymes that are required (substrate) or inhibited by each of your drugs, and see which are using the same enzymes. Those are the most likely candidates for drug-drug interactions. Traffic jams in a liver enzyme cause the plasma level of one drug or the other to stay artificially high, as the drugs get "backed up" in the liver. This can also cause liver damage.

 

When did you start tolperisone? Biperiden? Please update your signature. What has been the effect of each drug?

 

Why did you decide you would go off tolperisone? Have you gotten any rashes or other signs of allergy?

 

If you're looking to reduce your drug burden, I would think you'd work on the aripiprazole, after you get stable. You'd probably want to reduce it very cautiously. See Tips for tapering off aripiprazole (Abilify)

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gdsequoia
44 minutes ago, Altostrata said:

How do you feel after taking vitamin B12 each day?

I take it first-thing in the morning, as it removes the joint pain in just about a minute. It's pretty amazing how that happens.

Only then do I take the aripiprazole, which "staves off" the aripiprazole-WD-induced joint pain until 12:00 (when I take the next aripiprazole dose).

 

(originally I was taking B12 because I was deficient. Only later did I discover it has analgesic properties in high doses)

 

50 minutes ago, Altostrata said:

Tolperisone is neurologically active, you should assume reducing it may cause withdrawal symptoms.

Good to know, thanks.

 

50 minutes ago, Altostrata said:

What you need to do is create a table showing the P450 liver enzymes that are required (substrate) or inhibited by each of your drugs, and see which are using the same enzymes.

Ok, I'll try to do that tomorrow.

 

1 hour ago, Altostrata said:

Please update your signature.

Done! I can also dig up more details on the biperiden history, if needed.

 

1 hour ago, Altostrata said:

What has been the effect of each drug?

I first started biperiden for nighttime drooling caused by a neuroleptic. It did work well. But it gives me a sort of mouth discomfort / hypogeusia / gum inflammation. When I was at peak dose, it was giving me some vision blurring as well.

 

Currently using biperiden for my tardive cervical dystonia.

 

Tolperisone helped a lot for my dystonia too. It worked as well as baclofen did, minus the sedative effects. I don't think I've gotten any side effects from it, apart from it possibly worsening my limb pain (this side effect is listed in the leaflet, too).

 

1 hour ago, Altostrata said:

Why did you decide you would go off tolperisone?

Several reasons.

1. I felt my dystonia was much reduced and no longer needed my high tolperisone dose, so I thought: "The less chemicals, the better." (also because I wanted to reduce any possible interactions)

2. I read it can cause muscle pain and/or limb pain (in the leaflet). Back then, I didn't know my muscle pain was termed "cramps" (cramps are not listed in the leaflet as a side effect)

3. I was under pressure to start doing basic housekeeping tasks, and so I desperately lowered all my meds and supplements in the course of a month or two. Thank God, I'm now in a much better condition.

4. Currently, my main reason is that I believed that tolperisone is the only one of my 4 meds that can't cause WD symptoms. That was before your latest response.

2 hours ago, Altostrata said:

Have you gotten any rashes or other signs of allergy?

Now that you ask, I looked at that link and yes, I've been having a fast heartbeat (tachycardia) in the last weeks/months.

 

None of the other allergy symptoms listed, though.

2 hours ago, Altostrata said:

If you're looking to reduce your drug burden, I would think you'd work on the aripiprazole, after you get stable.

Thanks for the suggestion. What would you say is a reasonable time to wait, in order to get stable? Gridley's recommendation was: at least 3 months.

 

About the tolperisone: I'm prepared to stop tapering it and stay at the current low dose. Would you suggest that I reinstate a previous dose?

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gdsequoia
13 hours ago, Altostrata said:

What you need to do is create a table showing the P450 liver enzymes [...]

Should I only consider CYP2D6 and CYP2C19? Or all the possible P450 liver enzymes that are used by the human body?

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