221 replies to this topic

[invalidusername]

The textbook symptoms there Vin as you say... and how I feel for you. It really gets you down when you are held in its grips and nothing it seems will aid you. You know it so well, but it is the concentration that you give it, that makes it worse. I wish there was something I could tell you outside of my own empathy for the situation.

 

I too went through a week of bad anger. I didn't believe that was possible from my incredibly passive persona - but it would seem anything is possible on these meds.

 

Regarding the hyperacusis, the pain would be explained away by the fact that pain thresholds are generally decreased during withdrawal in many people. Tinnitus is also worsened, so one down, all down! Think logically insomuch that it will abate just as it has come on.

 

I am surprised Hat didn't use his magic words here (time and patience), but as you have already been through so much, the point would seem almost moot at this juncture!

 

Hang in there Vin...

[KathyInFL]

Vinpin, you will make it! Just take it easy and if you don't feel like working out, stay in bed! I am staying away from people too, "luckily" I'm unemployed and don't have to deal with work and people there.  I have some anger, but I try to ignore it, it's not easy, especially while driving. I think I was angrier when on the C. I try to count to 10 before saying some things. LOL

 

I am trying all different supplements, I don't know if any are helping. Maybe they are helping Amazon's bottom line? 

[Vinpin]

Hi FH,

 

Thanks for your quick response. I was hoping someone would reach out.

 

My "go to" medicines for are the chewable Dramamine (2 at a time) and my Alprazolam (2 a day instead of my normal one a day) during these times. This time, because the aches & pains are exacerbated by soreness from the extra-hard workout, I added Aleve (2 tablets). That's it - the only other things I've done is not wearing my hearing aids (so that voices/noise is not as sharp, to ease the Hyperacusis), and sleep (just woke up from 3 hour "nap").

 

Is it this bad at the very end quite often? Could it be even worse when I make the step to 2 beads a day, then 1 bead a day, and so on???? How can my body be reacting so drastically to tiny, minute drops - is that typical?

 

-V

[Vinpin]

Thanks IUN & Kathy - your kind words mean a lot too.

 

Yes, I know all about "time and patience" - and that's helped in the past, but not this time. I guess, because I've hit one full year of weaning, that I'm completely fed up that even a full year is not enough time.

 

I've also been very bitter that not just Cymbalta, but all recent SSRIs & SSNI's, have been approved for the market by the FDA before completing Phase IV of a full clinical trial (am I right about this, FH???). The FDA is supposed to protect us from situations like this, and in my eyes, they have failed us miserably.......Additionally, at the very least, Eli Lilly should put some money toward informing us on how to manage the withdrawal process. Instead, we all have to figure it out for ourselves ........ a few choice four-letter words come to mind, just thinking about these occurrences....

 

-Vinpin

[fishinghat]

Very typical VINPIN

Your nerves are already sensitive to the past drops. It takes synapses up to 2 years to fully recover so the further you go the more you suffer.

I would suggest that you consider 100 mg of Suntheanine up to 4 times a day, 500 mg NAC/day and/or 500 mg 2 times a day Lion's Mane Mushroom extract. The Suntheanine would be my first choice if I had to go through it again (God forbid).

I don't know if they finished Phase IV on Cymbalta or not. I know they didn't on Prozac.

[invalidusername]

I knew it wouldn't be long before the Lion's Mane came out!! But it certainly seems to have helped in these cases. Given what we have read about the NAC, I would be inclined to try that first. If Vin is feeling a bit low, then I would be concerned that theanine would exacerbate this - even though I can see it aiding with the anger issues.Tough call.

 

Regarding the drops... 3 beads to 2 is a drop of 33%. No different to 40mg from 60mg. Hence the reason for going slow at the end. Doctors think linearly, which is why we end up with so many problems when withdrawing. 

 

No pharma's are concerned about withdrawal. Once they have done their 2 weeks weening off, that is their commitment taken care of in the eyes of the FDA, NICE etc. There is no money in it, so why should they. It would be like me helping a client look for a new hosting company. Wouldn't happen.

[KathyInFL]

You all will think I'm crazy (crazier??) but I went from 4 beads in November to 2 beads in December and then I stopped. I didn't really feel any different than how I've felt since approximately September. Remember, I did wean for almost 2 years.  

 

I am going to order the other supplements that are mentioned above. Amazon needs more of my money. 

 

I still think Eli Lilly would make a few billion more $$ if they invented a drug that allowed people to get off C easily. Maybe I'm just dreaming.

[invalidusername]

...that would be admitting to the poor unsuspecting public that it is an SOB to withdraw from

[Vinpin]

Thanks all for more great info.

 

I am actually feeling a bit better tonight ..... I need to accept that sleep is my greatest ally, and I should lower my expectations in terms of both my exercise regimen and moving on with the things I want to do (mosaics, app building, etc.). I just need to muster up some more patience, I suppose  .......

 

FH: I think I will try the Suntheanine. Is this a good one to buy???:

 

https://www.amazon.c...way&sr=8-6&th=1

[fishinghat]

Not too impressed. The Suntheanine part is ok but it contains high amounts of sugar which is of course a stimulant, also xylitol, a natural sugar substitute, artificial flavorings which some have their own health concerns. These additives are mostly there for taste because it is chewable.

I would recommend …

https://www.amazon.c...PDKIKX0DER&th=1

and avoid the additives.

IUN, any comments?

[Vinpin]

FH: Thanks so much for your recommendation!

 

Just for reference purposes for "passer-bys" on this thread ..... I do think working out hard and pushing your body to its limits is NOT a good idea during withdrawal. I love my elliptical and stair-master exercises in the gym .... but I'm starting to realize I need to go much easier the first week or so after a bead drop. And of course, I need to go easier when I have even a hint of downturn in my symptoms other times as well.

 

-VinPin

[invalidusername]

Agree with Hat on this one, especially as blood glucose levels will rise to a degree from theanine without the extra sugar. Not sure whether it also might stimulate the digestion process, thus depleting concentrated levels of theanine. Either way, better to avoid.

 

Also agree with Vin - light exercise only!! You will burn yourself out just like I have over last 9 days of car work.

[Vinpin]

Hi again friends --

 

Update on me - started on a very bad spell last night, and continued this morning. Light-headed, dizzy and headache - but more intense than usual. Doesn't make sense to me - haven't changed the medicine amt in three weeks.

 

But - I just picked up something from another post written by FH & IUN that may explain some of the sudden downturn....I think I am using gelatin capsules from my Compounding pharmacy --- not enteric capsules. And, switched over to the gelatin capsules for all doses just this Sunday. If the gelatin capsules are dissolving in my stomach and not getting the medicine all the way to my Intestines .... that might be the answer! It's almost like going cold turkey from my 3 beads a day, right?

 

I'm going to the compounding pharmacy right now!!!!

 

-Vinpin

[fishinghat]

Good catch Vinpin. Actually there are two effects. One the Cymbalta is partly destroyed by the stomach acid and the other a byproduct of that destruction is...

https://dailymed.nlm...f2-c185fbad64ba

"In extremely acidic conditions, CYMBALTA, unprotected by the enteric coating, may undergo hydrolysis to form naphthol."

Which is toxic as well.

[invalidusername]

Wow - great find Hat. Fantastic. That is what we were looking for. Well done that man...

 

But even before this, I would have put good money on Vin's situation being the capsule - exacerbated by the fact that he only has 3 beads. Let us know the upshot of the enteric coated caps Vin.

[Vinpin]

OMG - what a doofus I am!!!!

 

On this thread, I misinterpreted a past response from FH that gelatin capsules were acceptable. But in going back and rereading .... all FH was saying was that it was OK that only gelatin capsules were available in local pharmacies, because enteric-coated, acid resistant capsules are available in Compounding Pharmacies and/or Amazon. What a doofus I am - I need to be more careful!!!

 

I haven't been using the enteric-coated capsules! This explains why I started feeling bad back around 2/17, too - that was probably one week's cumulative effect of switching from 2 beads twice a day (with only one of those daily capsules with two beads being the original, enteric-coated capsule that the medicine came in), to 1 bead 3 times day (with only one of those daily capsules with one bead being the original, enteric-coated capsule that the medicine came in).

 

And then things got significantly worse last night and today, because the last enteric-coated capsule dosage I took was Sunday (2/24) AM. (Its been all clear gel caps since) My worsened symptoms are likely explained by the fact that no Duloxetine has made it all the way to my intestines for absorption since Sunday AM. It must almost be like going cold turkey ..... except I was only going cold turkey from three beads - not from higher doses like 20, 10 or 5 mg like many of my forum friends ......

 

Knowing this, I feel confident that I am going to start feeling better soon! I just took 2 beads in an enteric coated capsule now (5pm EST), and will take one more bead in an enteric coated capsule at bed time. Then, the remainder of the week, just to recover, I'm going back up to 2 beads twice a day - all in enteric coated capsules. I think that will do the trick.

 

My Local Compounding Pharmacy didn't have enteric-coated, acid resistant capsules. In fact, they looked at me like I had two heads(!!!). They weren't even aware of the difference between the two capsule types, couldn't even order enteric-coated capsules for me, and even discouraged me from opening the capsules of the original Duloxetine to begin with .....

 

Luckily.... I seem to have found them on Amazon, and have already ordered:

 

https://www.amazon.c...0?ie=UTF8&psc=1

 

FH (or IUN or others) .... please let me know if you approve the enteric capsules I selected and purchased on Amazon.

 

Thx all!!!

 

-VinPin

[fishinghat]

Yep look good to me.

[invalidusername]

Gets my vote.. all 500 of them! Would have been cheaper to send you some of my spares

 

I was also told that "the capsules are not meant to be opened" - said like a teacher would speak to a naughty school-boy. I don't do well being spoken to like that. Along with other things the p-doc said - including "not believing me" about a research paper that I had printed and bought into his office - landed him an official complaint through the NHS.

[Vinpin]

Thank you both.

 

Yea, IUN - who needs 500? Oh well - at least there will be no need to re-order .....

 

I agree, too -- I had to deal with my Compounding Pharmacy pharmacist looking at me in utter disbelief with the questions I was asking. Not sure why I caught him so flat-footed; I would think this is part of their job - knowing the details of drug components and answer questions about the components, etc. I guess not. Even my Walgreens pharmacist (who I like better) had a sort of condescending look and an attitude of "shouldn't be doing that".

 

IMO .... I am the sole decision-maker of what's best for my body, and my doctors provide advice and guidance. I depend on the doctors greatly .... but I don't take what they say as 100% gospel "rule of law". After all .... neither of my two PCPs, nor a P-Doc that I was seeing, advised that I even consider coming off Cymbalta/Duloxetine at some point in time. 12 years of taking it almost mindlessly, as if there were no other options, and also as if I would never form a chemical dependency for it. No doctor ever questioned it. Why? Probably because they are "joined at the hip" with big Pharma and their reps that corruptly wheel in the samples to doc offices at least weekly....

 

At some point, would like to discuss whether we should all be contacting the FDA (their Medwatch portal???) about our nasty experiences with the withdrawal. I think the FDA, together with pharma lobbyists, may be the biggest part of this entire problem. The FDA's drug approval process needs to be more stringent .... and important phases of clinical trials should not be glossed over for the sake of getting a drug into the market. (I know -- I am preaching to the choir!). I may start a separate thread on this topic; if one already exists, please let me know....

 

Thx, -VinPin

-Vinpin

[fishinghat]

"IMO .... I am the sole decision-maker of what's best for my body, and my doctors provide advice and guidance. I depend on the doctors greatly .... but I don't take what they say as 100% gospel "rule of law". "

Amen

"At some point, would like to discuss whether we should all be contacting the FDA (their Medwatch portal???) about our nasty experiences with the withdrawal."

The FDA has been part of numerous lawsuits concerning Cymbalta side effects as well as withdrawal. The courts in 2009 (?) ordered a black box warning be placed on the drug insert for Cymbalta. That was great but there was no order to retrain the drs about this occurrence. In addition, FDA and the courts issue warnings around 5 or 6 times per week and the drs simply can not keep up with these as well as reading the approximate 300 medical research papers that are issued each week. The day a dr graduates from medical school he/she is a dinosaur as the amount of new information will leave them in the dust.

"The FDA's drug approval process needs to be more stringent .... and important phases of clinical trials should not be glossed over for the sake of getting a drug into the market. (I know -- I am preaching to the choir!)"

Back in the early 80's (yes I am that old) the FDA was a lot more stringent on the investigation process on new drugs. Most took 8 to 12 years to complete the studies BUT the suffering public raised an uproar with their politicians and pressured them into streamlining the approval process. The public said 'We are suffering and can't wait.' Of course the pharmaceutical companies jumped on that band wagon as well. Companies regularly get fined 10's of millions of dollars for withholding some of their testing results from the FDA BUT there profits are so high it just isn't a deterrent. There has been an effort in recent years to pursue criminal charges against upper management for knowingly withholding that info. This seems to be helping some as research scientists are acting as whistleblowers and reporting these events to the FDA.

[invalidusername]

Good grief that was an interesting read. I would say that I am shocked, but on reflection of what I have learnt over the last few weeks, I can't honestly say that I am.

 

Reminds me of what I read about the emergence of Prozac....

 

When first manufactured, reps went all over trying to push it, but at the time (also 80's), tryptophan was used in abundance to treat mental health issues with a relatively good level of success. This didn't bode well for the Prozac pushers, and strangely enough, a contaminated batch of l-tryptophan came into the US and caused 11 fatalities. This led to the recall of all products pending investigation. It was traced back to a Japanese manufacturer and their batch. Prozac came back and had its hay day.

 

By the time the truth was uncovered that the Japanese laced the batch with intent, and that tryptophan is perfectly safe, the SSRI age had dawned and reversing the trend would put too many people out of work and pharma plants shut down - so there it stayed. 

 

What is interesting is that the big coverage by Newsweek with Prozac on the front cover was in the pipeline days before the tryptophan issues occurred. 

 

And who is the company behind all this...? The manufacturers of Prozac?

 

Eli Lilly - the people who brought you Cymbalta.

 

I am not citing this as it is all over the Internet, and whilst covered up, is now accepted as fact.

[fishinghat]

Well said.

[invalidusername]

I thought you might have been aware of this Hat, but just to get coverage as this forum comes quite high on Google...

[Vinpin]

Hi FH & IUN,

 

Thanks for the added color to my layman's take on the situation. Gosh IUN, I have to find that Prozac story online and read the details.......

 

FH: Very surprised to hear about the 5-6 warnings per week issued by FDAs and courts; it would be naive to assume any doctors would be able to keep up with that sort of flow. FH, are some warnings prioritized in some fashion, such that those of utmost importance (and of course, much less frequent) do grab the attention of the doctors, especially if they care to keep abreast of such "top tier" warnings?

 

Despite this undoubted fact about a flood of warnings ..... there are other things the FDA can do. It looks like the pamphlet for Duloxetine is still making the vague/bogus  "1% or greater" statement about discontinuation syndrome symptoms - why hasn't the FDA mandated that Eli Lilly be more exact about withdrawal symptom prevalence in the pamphlet? The vagueness of the statement is well documented -- but yet the FDA allows it to remain?

 

Also - what about some stab at guidelines for weaning off based on the study results? Having the biostat background I have ..... I think the FDA should minimally require Eli Lilly to not only create weaning guidelines, but have different guideline sets for different lengths of time on the medicine (e.g <1 year, 1-5 years, >5 years). I was on Cymbalta/Duloxetine for 12 years .... obviously, my regimen for weaning off would be much different than someone on for just a month or two.  I am hypothesizing, of course .... but something needs to be done.

 

The FDA's oversight is important .... and obviously, it is falling short. I wish someone would wake up and realize that Big Pharma doesn't need to be bankrupted, or even fined .... it just needs to be forced to be more prudent with drug roll outs and followup long-term usage research.

 

-VinPin 

[fishinghat]

"FH, are some warnings prioritized in some fashion, such that those of utmost importance (and of course, much less frequent) do grab the attention of the doctors, especially if they care to keep abreast of such "top tier" warnings?"

No priorities but it is important to note that the FDA only issues a black box warning if there is a substantial risk to human health or life.

"It looks like the pamphlet for Duloxetine is still making the vague/bogus "1% or greater" statement about discontinuation syndrome symptoms - why hasn't the FDA mandated that Eli Lilly be more exact about withdrawal symptom prevalence in the pamphlet?"

That is due to a court order which allowed this comment to continue to this date.


"Also - what about some stab at guidelines for weaning off based on the study results?"

That is a very good question. The FDA did publish a guideline for withdrawal many years back but it has since been deleted from their archives. It is interesting to note that those guidelines were arrived at from several websites, including this one. In my conversations with Eli Lilley they stated that a warning is all that they are required to do and there is no requirements to establish a withdrawal method. I can tell you that this is true for opioid pain killers, the old TCA antidepressant and others.

[Vinpin]

Thanks FH.

 

Its all so ridiculous. This is all not in the best interest of patients who are suffering on w/d.

 

From the way you are describing this (very clearly, I may add....), it sounds like many parties are at fault: Eli Lilly, the FDA, the courts, doctors, and even patients - although the patients are more victims than anything else. It's like so much in life .... when several, distinct parties are responsible for a particular objective, things inevitably fall through the cracks - whether intent to reach the objective is true or just "for show". This is true in U.S. politics - between the executive, legislative and judicial branches at the federal level, along with state and local governments. In both scenarios, the blame game is played in full force, and patients (or constituents) are frequently the losers.

 

However .... we must make the best of things. Your work, and this site, helps tremendously in filling the gaps. Thanks so much!!!!...................(-;

 

FH - do you think submitting comments via the FDA's Medwatch site is worthwhile? Is it one of those things that, if enough people do it, the FDA would be more motivated to take further action to remedy our struggles?

 

Thanks again,

 

-VinPin 

[fishinghat]

"FH - do you think submitting comments via the FDA's Medwatch site is worthwhile? Is it one of those things that, if enough people do it, the FDA would be more motivated to take further action to remedy our struggles?"

In general I do think this is a good idea. It often prompts the FDA to do or issue orders for the manufacturer to do further studies. Law suits are generally the best source of making changes however the patients who suffer see little of the benefits. Specifically, in the case of Cymbalta, the FDA currently is under orders to do the warning only and unless the court order is set aside in another court case there is little they can do. In the case of Cymbalta there has been a large number of court cases over the years with the normal plaintiff getting from $100 to $1,000 in damages. Further lawsuits at this time would be considered untimely by most courts IF you could even find a lawyer to represent you.

Reporting side suspect side effects to FDA can do a lot of good. Not only do drs have access to this information but so do patients. The FDA statistics are posted on the ehealthme website and are an excellent source of info for patients who are researching a new medicine the dr has recommended or in determining if some new symptom you are experiencing is a possible side effect for the medication you are taking. I have used these FDA statistics several times in talking to my drs. If a dr choices to belittle FDA info or will not review anything from the internet, especially medical journal articles or FDA recommendations then I fire that dr and find another one. I don't ask they believe everything I bring them but that they only give it fair consideration.

[Vinpin]

Hi again everyone,

 

Surprised this morning that I am not feeling better than I am.

 

Not as bad as Tuesday evening ... but I expected three days of resumption of 2 beads twice a day to put me back on a decent track. Instead, I'm going through the same symptom set I experience when I do a drop - bad headache, very light-headed and dizzy/disoriented, and lethargic. I'm so over these symptoms - its been almost continuous for 14 months now!!!

 

FH (& others): Could this be attributed to my brain and body going through a rollercoaster of dosage changes? With gelcap fiasco I put myself into .... I wonder if my body was trying to handle a drop to what effectively amounted to 0-2 to beads worth of Duloxetine into my system. When I switched over to enteric-coated capsules, and two beads twice daily, that could effectively have been a relatively big increase. Maybe my brain/body weren't ready for that kind of uptick???

 

Thx, -VinPin

[fishinghat]

Vinpin

Good question. I am not sure there is an answer other than speculation. Three days is enough to stabilize your Cymbalta blood levels. At least you are not worse.

"I'm so over these symptoms - its been almost continuous for 14 months now!!!"

true but you have also decreased down to 4 beads a day during that time. How long you been at 2 beads twice a day?

[Vinpin]

Hi FH,

 

At 2 beads twice a day since Tuesday evening - first 2 bead dose was Tuesday 7pm.

 

Will likely just keep it at 2 beads twice a day until I am fully stabilized for at least one week, maybe longer.

 

Gosh, this is hard ......

 

-VinPin