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2 Failed Tapers. Very Sensitive To Drops. Advice Please.


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#301 fishinghat

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Posted 13 August 2019 - 01:13 PM

"Sorry Hat, I'm not following. Are you saying that in your opinion the capsule with 325 beads in & the capsule with 375 beads in, will both still equate to 40mg? "

Yes, I don't know about the laws in other countries but here in the USA a 40 mg capsule must contain 40 mg +/- 10%.

#302 fishinghat

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Posted 13 August 2019 - 01:15 PM

I hope you read that thread by Vin that IUN posted. I think it will give you a better perspective of the variables involved.

Boy, sometimes this site just %$^*() my posts. Sorry, just had to say that.

#303 Noush

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Posted 13 August 2019 - 01:55 PM

I have read Vin' s post yes. However, I don't think that he is half as sensitive as I am (fortunately for him!).

So Hat, if I was to start weaning again, as back last year I started with bad withdrawal 18 weeks in & 18 beads down, would you recommend that I drop a bead a week for 16 weeks, hold at that for a few weeks & then start to drop a bead a week again?

Then when I get a new pack I count the average of 3 capsules & deduct the same amount of beads as I was deducting from the previous pack.

And if I'm reading your reply correctly, every time I receive a new pack I could be dropping or going back up 10% of the dose anyway without even know?

#304 fishinghat

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Posted 13 August 2019 - 02:22 PM

You understand correctly. Even from one capsule to another there can be a 10% difference. However, it has been my experience with other members of the forum that usually the number of beads per capsule is fairly consistent (+/- 1 or 2%?) within one refill. I think the idea one bead drop per week sounds good. You can always stop before the 16 weeks if necessary as well.

#305 Noush

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Posted 13 August 2019 - 02:53 PM

Oh for God's sake! So as I have been adding 50 beads to the 325 bead capsuals, to make the bead count up to the previous packs 375 bead capsuals, I have subsequently upped my dose by 8mg and am now taking 48mg a day! At a bead a week, that's a years extra weaning!!!

#306 invalidusername

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Posted 13 August 2019 - 03:41 PM

Well here I am, wide awake after only 3 hours sleep, with my heart pounding again, unable to sleep, even though I am exhausted! My sister kindly counted the number of beads in a capsule out of my current pack for me which was 354 beads. Before I reinstated, I had dropped down to 358 beads!!! My capsules at the time had between 370 & 380 beads in. Therefore, it seems that I've probably done a 5% drop in beads pretty much over night! Bingo! Looks like I have found the reason for the racing heart & insomnia again. Yo-yoing up & down in beads. So I'm going to bead count my capsules to 375 to see if that resolves matters.

 

Right - just to clear matter up, the beads which you added to the "new pack" to supplement a reduction in the beads, as you rightly state, amounts to 5%... which is within the criteria of the error margin set by the FDA. Therefore, given the inconsistency of these packs, your dose could well have been the same in both packs even after adding these extra beads. 

15 beads is one thing.. however 50 BEADS is something else and should have been questioned at that time. It is plausible that there can be 10-5 beads difference between packs, but 50 is not - furthermore, it is well outside the 10% tolerance and thus should have been flagged up.

Meaning.. if a tolerance of 10% is permitted, and you added 5%, there could still be another 17-odd beads before reaching this limit. Whether you updosed, downdosed or stayed the same.. no-one knows. This is the bottom line. Had I have been faced with the situation back in December where the beads were 10/15 difference, I state my case in saying that I would have made up the difference, but having counted a significantly less amount in another pack would have not proceeded in the same way. Had this have been bought to the attention of Hat or myself, we would have said the same thing.

I truly have every bit of empathy for you Noush as to what may have set you back, but the errors and inconsistencies lie with the Pharma, and it is because of all these issues that there are sites like this and people like Hat and myself doing our damnedest to get people better!!


#307 fishinghat

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Posted 13 August 2019 - 05:36 PM

This is the first time I have seen such a large variation in bead count with the same manufacturer but what concerns me is how often does this happen? Is it just a matter that one batch comes from one facility and the next batch comes from a different facility OR does the number of beads differ from one day to the next. When I talked to Eli Lilly a couple of years ago they said they fill the capsules by weight. That is fine BUT we know some beads in the capsule will be slightly smaller than others. Larger beads will have more medicine per mg of bead because size of the bead is geometric in relation to weight. So a bead that is twice the diameter of another bead will contain 2 times as much mass. And then you add in the other +/- 10% they are allowed to vary it becomes a nightmare. So now what?

We need to weight the beads (that is only accurate if they are the same size)
Count the beads (that varies from order to order, manufacturer to manufacturer as well as by 10%)
Sieve the beads to get an even size. Vin has already proved that is a nightmare as well as being potentially expensive.

I am thinking stay with one brand only and count the beads each time you get a new refill is about the best we can do. What a nightmare.

#308 invalidusername

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Posted 13 August 2019 - 05:57 PM

"I am thinking stay with one brand only and count the beads each time you get a new refill is about the best we can do."

 

Just to clarify what Hat is saying... count the beads relative to your respective dose.

 

So if you are taking 40mg and the capsules supplied are 40mg, then leave them as they are.

 

When it comes to bead counting, for example to 30mg, you would take out 25% of the beads from the 40mg regardless of how many beads there are in the current pack relative to previous packs.

 

This way you can be sure that you are within the 10% margins which is the best we can hope for.

 

Am I there with you, Hat?


#309 Noush

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Posted 14 August 2019 - 02:49 AM

So guys, are we saying once I have had a couple of weeks stable. A good plan would be....

From the pack that I have now, which has about 2 weeks left, deduct 1 bead per week.

Then when I get a new pack, count the total amount of beads & then deduct 1 bead per week from that. Pausing at 15 or 16 weeks to let my extremely sensitive Brain catch up?

Hope this makes sense. I do have scales as well. So going to take the weight of a capsule from this pack & then one from my next pack just for my curiosity.

#310 fishinghat

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Posted 14 August 2019 - 08:17 AM

"So guys, are we saying once I have had a couple of weeks stable. A good plan would be....

From the pack that I have now, which has about 2 weeks left, deduct 1 bead per week."

No problem with that approach.

"Then when I get a new pack, count the total amount of beads & then deduct 1 bead per week from that. Pausing at 15 or 16 weeks to let my extremely sensitive Brain catch up?"

You will have to address your dose after counting the beads in the new pack. So if you were doing 325 beads and got down to 322 beads before starting the new pack that is a 1% drop. And for this example lets say the new pack has 360 beads. You will need to drop that 1% (around 4 beads) to equal where you were at with the last pack.

The thing you have to remember is that whether an unopened 40 mg capsule has 400 beads or 200 beads or a hundred beads it still contains 40 mg. If you read the Eli Lilly patent it allows for a range of bead sizes during manufacturer. That is why they fill the capsules by weight. A certain amount of weight is a certain amount of Cymbalta regardless of bead size.

If this is confusing (which it is) then you might be better off using your scales. If you are dosing at 120 mg of beads (just an example) then each time you get a new pack 120 mg would still be the same dose +/- 10% that they are allowed to vary.

#311 Noush

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Posted 14 August 2019 - 12:04 PM

No Hat, no confusing at all. That makes perfect sense!

What I don't understand is, prior to January, I was getting headaches, foggy head some days, jaw clenching & this was when I was just taking the capsules as they are without opening them. Then I had a week of what seemed like withdrawal symptoms, so decided to open the capsules & count the beads every day, to ensure my dose stayed exactly the same, keeping the bead count the same even when getting a new pack. Since starting this in January, I have felt the best I have in 6 years. No side effects, tiredness, headaches, nothing. But in theory, if what you are saying is correct Hat, I will have been bouncing up & down with my dose more than ever before. So, I can't get my head around this.

#312 fishinghat

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Posted 14 August 2019 - 12:33 PM

I understand. Even with taking capsules as is, or removing the same number of beads each time or weighting the beads that 10% variation they are allowed in making the med is enough to cause variations in how you feel. Why you kept feeling so well for 6 months by taking the same number of beads each day...Unusual. Maybe God was giving you a break. lol

I just don't know but after 6 years of being on this site and reading ALL the posts I am never surprised by the way things fluctuate up and down no matter how you approach it.

#313 Noush

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Posted 14 August 2019 - 01:05 PM

😂🤣😂🤣 I bet you have seen it all. I think what you do on this site Hat is amazing. You will have help & be helping more people than you ever know.

So,going forward for me. Seen as though I seem to have bad withdrawal whenever I get to the 5% drop point, what would you recommend? I don't know if you remember, but my GP said she didn't think that bead counting would work for me if I have failed at it 3 times. So she wanted me to bite the bullet & come off quickly over a month & just right off a month of my life. She said it'll be like pulling off a plaster & although wouldn't cross taper me to something else, would prescribe propanolol & anxiety meds to ease the withdrawal symptoms.

#314 fishinghat

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Posted 14 August 2019 - 04:09 PM

I just lost my post so I guess I repeat.

First of all, just for your information Cymbalta is stored in fat tissue. So gaining or loosing weight has a significant impact on withdrawal.

Second, as far as your dr's suggestion, there was one dr who had a patient that had a very difficult time with withdrawal. The dr had the patient come off the Cymbalta completely and told the patient to take some extra beads when the symptoms got bad. The patient found that with time they needed less and less beads to get relief. Now other members have tried taking extra beads when their withdrawal got bad. Most saw relief in 1 o 3 days BUT a few saw relief but developed dizziness and brain fog. I am not suggesting this but it is an option. What do you think?

#315 Noush

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Posted 14 August 2019 - 04:25 PM

Do you mean come off 40mg over a month, dropping in 10mg increment & taking extra beads when withrawl is really bad?

#316 Noush

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Posted 14 August 2019 - 04:28 PM

I can handle dizziness, feeling sick, aching, brain for, even headaches. For me, the worst withdrawal symptoms are Anxiety, depression & Insomnia. Thoughs I really struggle with.

#317 fishinghat

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Posted 14 August 2019 - 05:03 PM

The patient in that case was only on 10 mg so they simply went cold turkey. You are on 40 mg so to go cold turkey from there would be tough. I think the 10 mg drop would be a good beginning and see if you can handle it, taking some extra beads when necessary. This is unchartered territory so your guess would be as good as mine.

#318 Noush

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Posted 15 August 2019 - 12:57 AM

I can't even handle 5% drops, so 10mg drops sounds crazy to me. But my Dr's thinking is if I'm going to go through withrawl on & off over years dropping 1 bead a week, I may as well have a really bad month & get it over & done with. Now if it was only 1 month, I could face it I think. My worry is, coming off that quickly, will cause months & months of withdrawal symptoms, Insomnia, anxiety & depression.

So alternatively, how would you approach the slow process of bead counting to try to avoid withdrawal?

#319 fishinghat

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Posted 15 August 2019 - 08:38 AM

"So alternatively, how would you approach the slow process of bead counting to try to avoid withdrawal?"

The only thing I can think of is to do a slow drop, say 1 bead a week to start (or 1% a week if you weight them) with and learn on other prescription drugs or supplements to help.

Prescriptions like clonidine, hydroxyzine or benzos. Supplements like L-theanine, Lion's Mane mushroom, cbd oil, and others.

All these options we have been discussing the last few days may not work but given your sensitivity and the variables associated with bead counting, weighting, etc there may not be a good solution.

The only other option is to cross over to one of the ssri like Zoloft, Prozac or Lexapro but there is no guarantees there either.

#320 Noush

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Posted 15 August 2019 - 12:52 PM

My GP won't cross taper me from an SNRI to a SSRI. And in her word "Duloxetine is a dirty drug, with lots of interactions with other drugs & supplements", so we wouldn't know if I was having bad withdrawal Or a reaction to the SSRI. She did get the opinion of a psychiatrist, who suggested the 'quick 4 week taper. So she has kind of left the ball in my court & just said while I'm ok on the drug, take my time to think & plan & just go back when I'm ready.

#321 fishinghat

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Posted 15 August 2019 - 01:24 PM

"... so we wouldn't know if I was having bad withdrawal Or a reaction to the SSRI."

I agree

No clear cut approach is there?

#322 Noush

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Posted 15 August 2019 - 03:23 PM

Doesn't seem like it. As I've only been on the additional 50 beads (8mg) for around 6 weeks, do you think I could drop that much quicker? Or will my body have got used to that dose now?

#323 fishinghat

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Posted 15 August 2019 - 04:03 PM

Your body should have got use to the dose by now. I feel for you. Tough decision on how to proceed.

#324 Noush

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Posted 15 August 2019 - 04:25 PM

Thank you Hat. I'm going to stay at the dose I'm currently at & ponder on it for a week or sk.

#325 Noush

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Posted 16 August 2019 - 10:32 AM

Now all if this has got me thinking. If I have been keeping my beads at the same amount for 6 months, but the weight & bead size has been changing, I wonder if at some point I could have dropped more than 5% at some point without realising 🤔🤔🤔

#326 fishinghat

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Posted 16 August 2019 - 11:40 AM

Possible. hard to say what effect it had. You could have went up 1%, down 3%, up 2% etc.


#327 Noush

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Posted 16 August 2019 - 01:07 PM

Hat, do you think that going up approx 40/50 beads or 7mg/8mg could have caused the recent slight vertigo & week of anxiety/low mood that I had last week? Which has now completely settled.

#328 fishinghat

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Posted 16 August 2019 - 01:37 PM

Definitely yes on the vertigo. The anxiety does appear for a few when they up dose but not for most. I am at least glad they have stabilized.


#329 Noush

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Posted 16 August 2019 - 03:01 PM

Mmm that's what I thought. I didn't think that upping the dose would bring on the anxiety. When I first went on C, I was on 30mg for a month & then 60mg for 6 months or so before dropping to 40mg & when I went from 30mg to 60mg, I had no issue's apart from tiredness. Who know' s 🤔



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