1636 replies to this topic

[ForLyla]

I wouldn't even be able to do that. 1 bead is the lowest I can go! How on earth will I be able to taper in the future? I cant stay on this medication forever.

Should I go back up the 1 bead or will that kindle me and make it impossible to go back down? Also, the timing of symptoms seems very suspicious with the pantoloc. I think I need to stop it as well.

[fishinghat]

If it were me I would probably consider stopping the pantoloc first and see how it goes for 3 or 4 days. By that time it will completely be out of your system.

I wouldn't consider going back up a bead until then.

Don't worry about how fast to drop in the future. Lets just get through this first and see how you are doing.

[ForLyla]

Ok good plan FH. I'll try that. Thank you.

[ForLyla]

Feeling more shaky today and didnt take pantoloc last night. Do you think if you go down in dosage for 2 weeks and go back up it will make it much harder to taper in the future? Or am I still so sensitive because my nervous system is still wired from withdrawal? Maybe if I give it more time it will be easier to taper in the future.

[fishinghat]

"Or am I still so sensitive because my nervous system is still wired from withdrawal? Maybe if I give it more time it will be easier to taper in the future."

I would agree with this. Nerves take a long time to heal and/or adapt so patience is often required. I would leave things the way they are for right now and see how you do over the next 2 or 3 days.

[Noush]

Hi ForLyla

I have found that with my three failed tapers, it has taken a couple of months each time for things to settle & that is after I have completely reinstated up to my 40mg original dose. I would try to avoid yo-yoing up & down in dose too much, as each time I have done this, I have become more & more sensitive to things such as caffeine, chocolate & alcohol.....all of which I love! Can I ask what your starting dose was, how long you were on it prior to starting your taper & what your current dose is.

By the way, Hat said I'm probably the most sensitive he'd seen, so don't be too disheartened, there's always somebody in a worse position. In this case ME! 😂🤣😂

[ForLyla]

Thanks FH and Noush. I started at 30mg about 3 years ago and tapered down to 22.5mg at a rate of about 10% a month. Went into hellish withdrawal and went back up to 25mg last February. Very slowly but gradually seeing some improvements. However, I tapered 1 bead (about 1.6%) or so a couple weeks ago and I'm feeling it now. Either that or it's because I was taking a new drug (pantoloc) for acid reflux. 

 

I'm feeling even worse today. I think I'm going to go back up the bead today and stay there for a good long while until I feel normal enough to taper again. Also stopped the pantoloc and my acid reflux isn't too bad so far. 

[ForLyla]

Btw if I had to make a guess I'd say it's the pantoloc causing my symptoms as Zantac did as well. Many people on the benzo board had problems with ppi's. Nevertheless, I'm not leaving anything to chance and I need to reinstate that bead before the 3 week window closes. I'm not going to be stuck in hell for several more months. I cant go through that again.

[invalidusername]

Noush is here... NOUSH IS HERE! Hey Noush!!! Great to see you. Hope the study and so forth is going well.

 

Lyla, I think this is wise under the circumstances and I sincerely hope that it brings success. I also share your opinion about the pantoloc....

[Noush]

Hey IVUN! How ya doing? Still having a bit of a rough ride from what I've just read. I thought I'd just swing by & see how everyone was doing. I'm not sure if you remember, but I think from bead counting my capsules to try to keep my bead count exactly the same each day, in July/August I unintentionally upped my dose by 5-6mg possibly more. As I was keeping to 370 beads per day & then one pack's average count went down to about 325 beads. So I was making that up, not realising that the individual beads may have been bigger & therefore the weight the same. Any how, about three weeks ago, I got a new pack (I get 3 months at a tine), and the bead count was back to 365-370. So I just stuck to that & therefore, in theory, may have dropped down by 5-6mg. After a week, I was getting very light headed, blurred vision, headaches, issues concentrating. As that has passed this week, have had quite low mood. No anxiety (thank god), just low mood & today, very tearful. Hopefully, another week & it'll pass. 🤞🤞🤞

[invalidusername]

Yes - I remember this well. It would makes things so much easier of they standardized the amount of beads in each of these damn capsules. The physical symptoms passing and the psychological symptoms starting is usually the way for a drop, so hopefully as you say, it will pass in time - and hopefully not too long, and am sorry to hear that you are having to endure these swings again.

 

I have been better, and my anxiety has come a long way for sure - I am just battling a bit with depression, but even that was going well until last friday when i was discharged from the mental health team. It has left me feeling very alone, scared and resentful of the health system. I am doing my best to keep going and not let it prevent my progress...

[Noush]

I have zero confidence in my GP's regarding my mental health & medication. They are pretty clueless. I would feel safer in the hands of the members of this site, than in the mental health team. You sound like you're doing great! Just keep on the same path old friend.

[invalidusername]

Thanks Noush... and I completely agree with you. The article I have just posted says it all about the state of the UK...

 

https://www.cymbalta...national-press/

 

Take care...

 

p.s. sorry for hi-jacking your thread Lyla!!

[ForLyla]

No worries! So my plan of action is to stay off the Pantoloc and go back up the bead to my last dose of duloxetine. 

 

I went down in dose for about 13 days total. Is this something that can set me back pretty badly? How about the pantoloc? Any timeline as to how long this could set me back? I haven't felt shaky like this in many months. It's a strange feeling and I'm worried I'm going to slide back into a really bad spot like earlier this year. 

 

Thanks

[invalidusername]

You are absolutely right to question this. The 13 days is certainly enough to induce a change in chemistry as blood levels alter within 3-4 days, following which further neurochemical changes will take place, but it is not so much that it cannot be quickly reversed if that is what you are concerned about.

 

Regarding the PPI, I would leave that to Hat to answer as he has more expertise in the area than myself.

[ForLyla]

How long do you suspect this will take to reverse? I'm in a terrible state today and feel like I've been setback considerably. My heart is pounding, I'm shaking and I'm starting to feel like I did 6 months ago. 

[invalidusername]

I'd feel it safer for Hat to direct you regarding this move as he has given the direction over the previous few days. What concerns me is the potential for the PPI to have caused the onset of the symptoms and it not having had sufficient time to remove itself from your system. Granted it has a very short half-life, but as it has the means to reduce the uptake of the Cymbalta, this can act very similarly to a more severe drop. 

 

When did you stop the PPI completely? As Hat has said, this needs a few days to balance out the blood level of the Cymbalta in your system before symptoms can be attributed to one med or the other. A premature decision at this point could cause a longer period of suffering, particularly if the PPI is the culprit here...

[ForLyla]

I stopped the ppi a couple of days ago. I think there must be some way that it does interact with the cymbalta, even if the chemistry doesnt make sense. That being said, you'd think the symptoms would subside pretty quickly when the ppi is completely out of my system and my body is getting the usual dose of cymbalta. I had a pretty bad wave when I took Zantac as well but not nearly as bad. I went back to normal after a few days so im hoping it will be the same with the pantoloc but I'm feeling so insanely agitated right now like I havent felt in months. My heart pounds and I'm shaking inside like I'm back in acute wd. Please god dont tell me I have to go through prolonged hell for a long time again because I took 3 pills of pantoloc!

[invalidusername]

Yes - because of the mechanisms of the PPI, it would be out of your system within the day, and then we need to give the Cymbalta a good three days for the levels to become stable, hence the 4 days that Hat suggested. Therefore a couple of days wouldn't give you the required coverage to establish the true culprit. As bad as things might be, I wouldn't want you to alter doses of the Cymbalta if it is not the issue as you will incur further complications by increasing the dose unnecessarily. 

[ForLyla]

I already changed the dose back to where I was. Remember that it's just one bead. Literally a 1% fluctuation. There's no way that's the culprit but it doesnt help so I went back up. I really dont think that will cause me problems. I took pantoloc and felt like hell the very next morning so that's definitely the cause of this. I took it for a couple extra days because I wasnt sure and it was the only thing that helped with my reflux. I'm so freaked out. Will I go back to normal shortly? I was improving so much. I'm so scared that's been erased now.

[invalidusername]

OK - so forgive my ignorance, but what is the purpose of reinstating that bead if the culprit is the pantoloc - have I missed something here?

[ForLyla]

Because I'm scared of making any changes. I just want to go back to how I was and I'm scared out of my mind that I've ruined any progress I've made by taking the pantoloc. I cant go back to how I was. I cant take the prolonged acute symptoms anymore.

[invalidusername]

I understand. Prolonged symptoms will have this effect on people and I in no way blame you for wanting to do this. 

 

I would therefore estimate the prior status quo of the previous bead count to be 5-7 days given the time on the lower dose. As I said, once levels have been balanced, the appropriate changes in the brain chemistry still need to initiate. This is the case whether it is one bead or one hundred beads. 

[Noush]

Lyla - each time I have had a set back due to a night out (drinking alcohol), too much caffeine, a very small drop in dose, it has taken 7 - 9 days (usually 9) for me to start to feel normal again. And just for the record, that 1 bead drop can make a difference in my experience. Please STOP thinking that this will throw you back into a prolonged withdrawal, it won't, but you will have a crappy week of withdrawal like symptoms. My advice to help ride the wave is DISTRACTION, DISTRACTION, DISTRACTION. Keep busy, but doing something that requires your mind to keep focused. Otherwise you will spend the day focused on how you are feeling & feed the vicious cycle, which can result in anxiety. This WILL pass, just ride it out, eat clean, stay hydrated & get out doors when you can.

[Noush]

Also Lyla, when starting a new pack of capsules, are you recounting out the beads from 3 capsuales, to work out the average bead count of that pack? This is something that I wasn't aware of & subsequently, when I thought I was dropping only 1 bead, I was dropping several & then possibly going up several with the next pack if the average count or bead size was different.

[ForLyla]

Hey Noush. I use a compound pharmacy that's quite accurate and I weigh each dose. Should I be counting the beads as well?

[ForLyla]

Thank you for the encouragement IUN and Noush. It really means a lot to me.

[fishinghat]

The compound pharmacy should be able to provide a stab le dose without you counting beads.

The guys/girls have given you good info.

I still wonder about the pantoloc. I found this...

"Common side effects (of pantoloc) include headache, diarrhea, vomiting, abdominal pain, and joint pain.[2] More serious side effects may include severe allergic reactions, a type of chronic inflammation known as atrophic gastritis, Clostridium difficile colitis, low magnesium, and vitamin B12 deficiency.[2]"
Pantoprazole Sodium Monograph for Professionals - Drugs.com". Drugs.com. American Society of Health-System Pharmacists. Retrieved 28 October 2018.

Obviously many of these would irritate the linings of the digestive tract and that could effect absorption of the Cymbalta. It has also been shown that those who take high doses of ppis may raise the stomach acid in the stomach to the point of the enteric coating breaking down in the stomach and not the intestines which would greatly effect absorption. This usually only occurs with significant overdosing, especially with antacids.

I think the updose to where you were is a good choice. Give yourself a couple weeks to settle down and then try a one bead drop again with out the pantoloc.

I hope I addressed all ypur concerns but at my age it is a different world everyday I gey up. lol If I missed something let me know.

[ForLyla]

Haha thanks FH. I'm just really hoping this is a short-lived setback. I was making fairly good progress the last little while. It's daunting to think that I could have setback my progress significantly. I'm convinced now that somehow Pantoloc and all acid reducing drugs affect psychotropic drugs. I'd rather deal with the acid reflux than this. I'm surpised how shaky I am - literally feels like I did last winter. 

[Noush]

What symptoms are you having Lyla? Just the shaking and nothing else?