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Tapering Guidance Needed, Not Sure What To Do Or Expect


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#1 sk8rmama24

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Posted 06 March 2018 - 11:28 PM

When I made the decision to start coming off some of my medications, I was taking 72mg methylphenidate, 120mg duloxetine, 30mg citalopram, 80mg latuda.  I weaned off the latuda within 4 weeks, and did not have any major withdrawal symptoms.  The only time I ever experienced very unpleasant withdrawal symptoms was when I missed 2 doses of methylphenidate, and when I quit taking zoloft after 3 days due to the adverse side effects.  Quitting zoloft caused brain zaps, and panic attacks for about a week, even though I only took 3 pills.

Next I decided to tackle duloxetine, because I never felt like it had much benefit for me, but of everything else I had tried, the side effects were a bit more tolerable (the only troublesome effect was the occasional tachycardia), so I left it in my cocktail.

I have gone from 120mg to 90mg, in a month, no problems.  I went from 90mg to 60mg in a month, and continued the 60mg for a total of 2 months.  Here is a summary of what has occurred.

 

90mg to 60mg duloxetine: 2 months

  • insomnia, unable to sleep most nights until I eventually flickered out by the end of the week.  lasted 1.5 months before able to fall asleep before 4am.
  • dizziness, occurs randomly
  • confusion, occurs randomly
  • increased frequency of headaches
  • daytime drowsiness, even after insomnia subsided.  need 1 to 2 naps per day, drowsiness is severe enough that I have fallen asleep waiting in public places.  just an intense need to 'rest my eyes'

These withdrawal symptoms seemed manageable enough, so I dropped from 60mg to 30mg on Feb 28, 2018.  This seems to be too much for me to handle, it hasn't been a week yet, and I have:

  • numbness/tingling/pain in my arms and hands.
  • daytime drowsiness, need 2 naps or a rest period throughout the day.
  • muscle stiffness in my back, along the spine and across shoulder blades.  neck seems stiff too.

I am not sure how to proceed, what the options are, but there seem to be 2 main choices.

  1. Do I stay on the 30mg and tough out the symptoms until they stabilize?  How long does that typically take?  The numbness/tingling/pain in my arms and hands is what is bothering me the most.  It is difficult to hold things, like pencils, so writing is difficult, sometimes it makes sleeping difficult because I cannot get comfortable, I drop things because my grip and perception are out of whack.
  2. Do I return to the 60mg dose until my symptoms subside? How long does that typically take? Once I am stabilized, what is the recommended dose reduction on the 60mg capsule?  I don't know how much to reduce the dose by, or how long to take the reduced dose.  Is there a recommended dose schedule?

I do trust my doctor and he is very good at discussing options with me and letting me call most of the shots, but I feel he is lacking the experience in this area.  When I brought up the taper plan before and asked how a 10% reduction would work, he indicated it would be extremely difficult to do, but probably not necessary at the higher doses and since I am on other antidepressant medications the withdrawal shouldn't be so noticeable, so the 120 to 90 to 60 was the starting point.

 

I am currently taking 72mg methylphenidate and 30mg citalopram with the duloxetine.  I would really appreciate some input and insight on which method I should consider to continue my tapering.  I have looked up some previous posts on this forum, but hadn't found much beyond reducing doses by 10%, but not clear as to how long this is done, and how to taper from a 60mg to a 30mg capsule, and then how to further taper off the 30mg capsule.  I do have both dosage forms at my disposal for bead counting presently.  I usually kept all medicines I was prescribed, even if the dose was changed quickly or I was tried on a different medication.  I feel like I have tried most everything for my depression.  I have not tried the MAOIs, but my doctor and I both agree it isn't worth the trouble and is not recommended to go that route due to the restrictions, and I have not yet tried the tricyclics, but I would need to come off my current meds to do that anyway.  So it is undecided if I will try them down the road or not.


#2 fishinghat

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Posted 07 March 2018 - 10:10 AM

"2.Do I return to the 60mg dose until my symptoms subside? How long does that typically take? Once I am stabilized, what is the recommended dose reduction on the 60mg capsule? I don't know how much to reduce the dose by, or how long to take the reduced dose. Is there a recommended dose schedule?"

I would recommend this option. Maybe go back up to 40 or 45 mg to stabilize. After that I would strongly suggest bead counting. Open one of your capsules and count the number of beads inside. Usually aroiund 300 but it can vary greatly. Once stable then remove no more than 1% of the beads per day. So 3 beads one day, 6 the next, etc. This provides for a slow more manageable withdrawal. At the first sign of symptoms pause your dose until you stabilize then begin at a slower pace. Some can tolerate 7 beads a day but we have had others who can only do 1 bead every other day. By the way this is the way the FDA recommends.

 

Treatment resistant depression is a bear. There is a thread called "and the answer to your question is..." on the medical support section. In that thread is a bunch of information on treatment resistant depression. Just do a search on that thread and the information should pop up. If you have difficulties finding the info just let me know.

 

If there is anything we can do to help let us know. We are here for you.


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#3 sk8rmama24

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Posted 07 March 2018 - 02:24 PM

Thank you for the recommendation.  I actually had to take one of my 60mg capsules today, to see if it would ease the neuropathy.  It got pretty bad this morning, two of my fingers were literally on fire with the burn.  I have a pretty high tolerance and threshold for pain (my doctors always comment on it) and usually opt to ride out the storm, but even this was more than I could bear.  So I will increase the dose until I stabilize and the neuropathy subsides.

 

I opened one of my 60mg capsules and counted the beads.  Was 367 beads in there, so I did some crude math and figured out each bead is about 0.17mg of the death agent.  Hoping this is good enough for government work.  I made a list, doing a 10% reduction all the way down to 29mg from a 60mg capsule, and got rough estimates for how many beads per capsule.  I will do the same with a 30mg capsule, to see the relative concentration per bead, but it seems I have a little time to get there, plus I need the feeling in my hands back.  Took me quite awhile to get one capsule done, I had to take a lot of breaks.  I just wasn't sure about how long I needed to take a particular dose, I assumed I would need at least 1-2 weeks (maybe even a month) if I planned to go the 10% route, but I honestly hadn't thought about doing a daily reduction at a lower percentage, which would most likely be even better at keeping the symptoms at bay.  Thank you for telling me about the daily reduction method.  It gives me much hope.  I will be putting together a list of resources and reduction plan, and have it ready to discuss with my doctor and figure out how the prescribing part and number of times I have appointments with him.

 

My mom saw me counting beads and asked me what I was up to.  I told her about the problems I was having with coming down on duloxetine and that I needed to get more creative with the process.  She is also on it, takes 30mg, prescribed for pain.  She had tried to stop it a couple times, and had problems doing so, and is still on it, but I have a feeling that she may want to come off it and I will be the one prepping her capsules.  I just wish I had better utensils to do the work.  Ironically, my background is drug development and pharmaceutical testing, bioanalysis, pharmacokinetics and toxicokinetics.  I used to prep dose forms of drug products from the APIs, which were usually in powdered form.  But I had access to analytical balances and lab-ware to measure and transfer the materials.  Needless to say, counting and transferring the beads using a flat bristled paint brush was more difficult, but the best option I had available to me.

 

I will check out the forum for the treatment resistant depression information.  I've tried a lot over the years, medications, ECT, naturopathy, diet modification, just lots of things, and nothing really worked for me.  TMS isn't covered by my insurance, but seeing as ECT didn't work, I doubt TMS would.  I keep on the look out for any clinical study opportunities to see what is new on the horizon, or see if I can try ketamine infusion, but there hasn't been anything local that is currently in progress.  I just feel like I have exhausted every method to treat it, so now I have changed my approach to learning how to live with it and manage symptoms where possible.  I've experienced catatonic depression, while taking antidepressant medications.  So it seems pretty likely that no matter what medication I try, I still am at risk for serious relapse.

 

 

"2.Do I return to the 60mg dose until my symptoms subside? How long does that typically take? Once I am stabilized, what is the recommended dose reduction on the 60mg capsule? I don't know how much to reduce the dose by, or how long to take the reduced dose. Is there a recommended dose schedule?"

I would recommend this option. Maybe go back up to 40 or 45 mg to stabilize. After that I would strongly suggest bead counting. Open one of your capsules and count the number of beads inside. Usually aroiund 300 but it can vary greatly. Once stable then remove no more than 1% of the beads per day. So 3 beads one day, 6 the next, etc. This provides for a slow more manageable withdrawal. At the first sign of symptoms pause your dose until you stabilize then begin at a slower pace. Some can tolerate 7 beads a day but we have had others who can only do 1 bead every other day. By the way this is the way the FDA recommends.

 

Treatment resistant depression is a bear. There is a thread called "and the answer to your question is..." on the medical support section. In that thread is a bunch of information on treatment resistant depression. Just do a search on that thread and the information should pop up. If you have difficulties finding the info just let me know.

 

If there is anything we can do to help let us know. We are here for you.


#4 fishinghat

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Posted 07 March 2018 - 02:56 PM

That sounds like you are headed in the right direction. We would also welcome your mom if she decided to join the forum.

 

I know a lot of members bought tweezers, special bowls, etc on Amazon to better deal with the little Mexican Jumping beans.  lol


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#5 sk8rmama24

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Posted 07 March 2018 - 11:58 PM

LOL, yes, the little beans do jump.  I did look around on Amazon to see what sorts of goodies I could obtain, I don't know how anyone would successfully use tweezers though.  I found a dual sided stainless-steel lab scoop/spatula and glass funnel that were less than $6 each, I also splurged on a capsule holder, weighing boats and extra gelatin capsules since I will have extra little beads to use.  All in all, I dropped about $30 for my pharmaceutical dose preparation items, but I also use couponcabin and they have a 20% cash back deal going on with Amazon purchases this month, so I will get $6 credited back on my spendings.  And since I have selected to have my cash back earnings added to Amazon gift cards, couponcabin gives me an extra 10% on top of my earnings.  So I will get almost $10 back in the form of an Amazon gift card.  CouponCabin is definitely the way to go when it comes to saving some $$$.  That and Honey, Honey finds the best prices and deals.  Couponing has never been so easy.

That sounds like you are headed in the right direction. We would also welcome your mom if she decided to join the forum.

 

I know a lot of members bought tweezers, special bowls, etc on Amazon to better deal with the little Mexican Jumping beans.  lol


#6 fishinghat

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Posted 08 March 2018 - 09:32 AM

You know I sort of hate to mention it but I had an unusual method of removing beads. I would open a capsule and place my finger tip over the end of the capsule. Shake the capsule once and a few beads would stick to the end of my finger. I would put those in my container to be saved and repeat the process until I have removed enough beads. Feel free to laugh at that method. You won't be the first one.  lol


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#7 sparkybird

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Posted 14 March 2018 - 02:39 PM

When counting your beads I found it helpful to buy #2 size capsules to put your beads in. I also used a black cloth as the little devils like to jump around.

It’s also helpful especially when the brain is out of wack from withdrawal.

Good luck.

I’m having trouble with headaches right now and am trying to fine help with that. If you or anyone reading this has a suggestion I’d appreciate it.

#8 gail

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Posted 15 March 2018 - 07:45 AM

Hi Sparkybird,

I feel stupid here, Tylenol doesn't work? Hot baths can help relieve the tension. You think that is due to withdrawal? I so rarely have them, besides Tylenol and hot baths, I wouldn't know what to do if that didn't work. I know a lot about anxiety though!lol!

Fishinghat, anything else on the market for headaches?

#9 fishinghat

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Posted 15 March 2018 - 09:49 AM

You know Gail I did a summary of all the members comments on headaches and of course most try excedrin, advil, aspirin, etc. etc.

Unluckily none of them were consistent performers. Basically choose one and you have a 50/50 chance.


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#10 gail

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Posted 16 March 2018 - 07:18 AM

Merci Fishinghat, I'm surprised at this.

#11 fishinghat

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Posted 16 March 2018 - 09:04 AM

So was I Gail. There was no clear cut solution. I wonder how Sparkybird came out with her 'sugar test'.

#12 sk8rmama24

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Posted 17 March 2018 - 11:02 PM

:lol:  I can't picture being able to control the beads that well using a finger.  They just don't stick well to my finger.  I finally opened one of my 30mg capsules to count beads and figure out the dose per bead.  Luckily it is actually the same as the 60mg beads, 0.17mg per bead.  There were about half the amount of beads in the 30mg, so I don't have to worry about mixing the beads from the different capsules.

You know I sort of hate to mention it but I had an unusual method of removing beads. I would open a capsule and place my finger tip over the end of the capsule. Shake the capsule once and a few beads would stick to the end of my finger. I would put those in my container to be saved and repeat the process until I have removed enough beads. Feel free to laugh at that method. You won't be the first one.  lol


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#13 sk8rmama24

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Posted 17 March 2018 - 11:09 PM

Yeah, I have tried Tylenol and Ibuprofen, still having headaches for most days.  Nothing seems to really work well for it.

 

As for my neuropathy in the arms and hands, the symptoms did subside a little when I went back to the 60mg dose to stabilize, however they are not completely gone, just less severe.  I still have numbness and tingling in my hands most days, it comes and goes throughout the day, but is still present every day.  Occasionally I had pain in my forearm.  I lose sensation in my hands when I am using them still, which makes it difficult to do things, I need to take a lot of breaks.  This really sucks because I make jewelry as a hobby, and manual dexterity is pretty much required when working with small objects and pliers.

 

I have no idea how long this neuropathy typically lasts before stabilizing on a dose.  It's been about 2 weeks I think, and I would like to continue tapering down, but shouldn't I stabilize first and have no neuropathy before I try to reduce the dose again?

 

 

You know Gail I did a summary of all the members comments on headaches and of course most try excedrin, advil, aspirin, etc. etc.

Unluckily none of them were consistent performers. Basically choose one and you have a 50/50 chance.


#14 fishinghat

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Posted 18 March 2018 - 08:41 AM

"I have no idea how long this neuropathy typically lasts before stabilizing on a dose. It's been about 2 weeks I think, and I would like to continue tapering down, but shouldn't I stabilize first and have no neuropathy before I try to reduce the dose again?"

2 weeks is long enough to stabilize. I think you have just been left with some sensitive nerves. If the neuropathy is tolerable and the other symptoms have eased you might try tapering slowly. Also, if you are taking vitamin B-6 supplements please stop as they can increase peripheral polyneuropathy. The timeing is a hard choice to make. Waiting to drop never hurts I guess.


#15 sk8rmama24

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Posted 18 March 2018 - 11:56 AM

Well that stinks, if I am left with sensitive nerves.  My hobby is making jewelry, which will be near impossible if I keep losing feeling and have weakness in my hands.  I am pretty good making jewelry too, even won Best of Show in my county fair.  I also have a webstore and do craft shows with my mom.

 

I am going to reduce my dose more slowly now, and begin taking some supplements that are supposed to help with neuropathy.  I don't take any B6 at the moment, I am not on any supplements or vitamins at the moment.  But if that can make neuropathy worse, I think I will leave it off my list of things to look into.  It did come up as a recommendation for withdrawal and neuropathy.

 

 

"I have no idea how long this neuropathy typically lasts before stabilizing on a dose. It's been about 2 weeks I think, and I would like to continue tapering down, but shouldn't I stabilize first and have no neuropathy before I try to reduce the dose again?"

2 weeks is long enough to stabilize. I think you have just been left with some sensitive nerves. If the neuropathy is tolerable and the other symptoms have eased you might try tapering slowly. Also, if you are taking vitamin B-6 supplements please stop as they can increase peripheral polyneuropathy. The timeing is a hard choice to make. Waiting to drop never hurts I guess.


#16 Wagtail

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Posted 26 April 2018 - 06:42 PM

Hello everyone, new & old members .
I’m a long time member & I come & go regularly.
Long story short .... I cold turkied from cymbalta approx 4/5 yrs ago .
I’ve never fully recovered but existing ok .
This group saved my life literally, especially a few special members & they know who they are , led by the very knowledgeable fishing hat .....
I was hospitalized after hanging on & suffering for 8 horrific months of the withdrawal side effects that you would all be familiar with .
I was reinstated on a tricyclic called Deptram. ( Australian name ) I am still suffering & have been informed that my cold turkey withdrawal from ( I think ) 60 mgs taken for 10 yrs to zero in one week ,has permanently damaged the nuerones in my brain.
I am seeing a great integrative GP & he has helped me a great deal .
We have decided to withdraw 😱 me off the deptram as it appears that it’s not working any longer .
I need reassurance that his method of withdrawal is ok .
Hell .....I am naturally terrified given what I suffered for 4 yrs previously.

His programme is..

Drop from 70mgs daily to 60 msg daily .... ( that is 10mgs a day .... 70mgs a week )
Hold for 2 months .

Drop to 50mgs & hold for 2 months

Drop to 45 mgs & hold for 2 months

Drop to 40mgs & hold for 2 months

Drop to 40 mgs & hold for 2 months

Drop to 35mgs & hold for 2 months

Drop to 30 mgs & hold for 2 months

Drop to 25 mgs & hold for 2 months

Drop to 20 mgs & hold for 2 months

Then he will review !.

We all know that the last few mgs are the hardest & where it will pack a punch ...

How does this sound to you experienced members ?.
By the way dear Fishinghat I haven’t withdrawn from my Valium yet . I’m still on 5mgs x 3 daily .

I have printed out the program you suggested for me & will withdraw from the antidepressant first .

Wishing each & ever one of you success on your journeys.

Kindest Regards
Wagtail .🙏🏼🙏🏼🙏🏼
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#17 sk8rmama24

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Posted 26 April 2018 - 06:55 PM

I am actually at a point where I need to hold my dose at 30mg until further notice until it can be determined what is causing my transient hypertensive episodes that cropped up in the last couple weeks.  My blood pressure makes pretty significant jumps in a short amount of time, and it is not related to my activity level at that moment.  I have gone from 117/67 to 145/95 and back within a 2 hour window.  It has caused nosebleeds at times.  It took me about 2-3 months to go from 60mg to 30mg by reducing the dose by 10% every 10 days.  I have actually gotten some of the feeling back in my hands and arms, but then my blood pressure, physical strength and breathing took a nosedive.


#18 fishinghat

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Posted 27 April 2018 - 09:12 AM

Hi Sk8mama

"My blood pressure makes pretty significant jumps in a short amount of time, and it is not related to my activity level at that moment. I have gone from 117/67 to 145/95 and back within a 2 hour window. It has caused nosebleeds at times."


Here is a copy from an earlier post of mine you might want to read.


"FH - Just wanted to pass along a growing trend in a new way drs can get accurate feedback on your anxiety levels and how to adjust your medicine.

As we have discussed many times on this site most antidepressants and especially antianxiety drugs will lower you blood pressure to some degree. Ever wonder why a dr will start you out on a low dose of a medicine first and then slowly increase it as needed? Well part of the reason is to be sure you do not take any more meds then necessary. The other part is to make sure your body has a chance to adjust to any changes in blood pressure. Any dr who puts you on a full dose to begin with is doing you no favors unless you are just desperate for help. By ramping up slowly you can see if you will develop any significant side effects before they overwhelm you; you can see if you have a reaction to a medicine before you get carried away with a full dose and to give your body a chance to adjust to any changes in BP.

What drs are doing now (and we can do this as well) is to monitor the systolic part of our blood pressure. The systolic is the top large number of our blood pressure. So if your bp is 120/80 then the 120 is the systolic number. The general guidelines are that if the systolic is over 120 then the anxiety levels are to high and an increase in meds may be necessary. If the systolic drops to near 90 (say 90/50) then this indicates that there is more medicine in your system than you need and the dr may cut back on a dose.


Now drs are using this method along with the information on how you feel to determine if any changes are needed. Of course you don't always carry a dr around in your back pocket so it is important to realize that you can use this method as well."

Sk8mama, I was thinking, if your blood pressure is that sensative to drops in the Cymbalta you may want to change the timing of your doses. Lets say you take Cymbalta at 8 Am every day and you are currently taking 212 beads ( I am assuming yoiu are bead counting). You may try taking half the dose (106 beads) twice a day, (8 AM and 8 PM), in order to provide a more stable blood level of Cymbalta. Have you noticed these spikes just before or just after taking your Cymbalta? Any pattern to them?


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#19 sk8rmama24

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Posted 27 April 2018 - 07:40 PM

Hi FH.  I started tracking my BP towards the end of March when the neuropathy/parasthesia was at it's worst, so I actually had that data to show my doctor where my BP was at when I was taking around 44mg duloxetine, through to being at 30mg duloxetine presently.  I have a cuff for monitoring, but the batteries died last week and I ended up missing some days until I got new batteries.  I have not been able to determine a pattern to the spikes, nothing is consistent at all which is why I can't pinpoint if it is due to a medication I am taking, was taking or discontinuing, and my BP is not altered by focused relaxation or breathing.  Even all of my recent symptomatic problems aren't specific to a particular body system, like cardiovascular, neurological or musculoskeletal.  I had an appointment with my primary doctor today and told her I wouldn't even begin to know what type of specialist I would need to see right now.  She referred me to a cardiologist first, because it is the most important to determine if I have an cardiac issues or damage, but if the cardiologist doesn't pin-point a cause, then I move to the next step which would be an endocrinologist.

Sometimes my systolic spikes but the diastolic is normal, or the diastolic spikes and the systolic is normal, or sometimes it is both.  There are so many variables, some that can be tested medically and others that are changing a medication or pattern and waiting to see what happens.  It could be duloxetine discontinuation syndrome, it could be that when I took diclofenac daily I experienced a more pronounced side effect due to sensitivity.  It could be hormonal imbalance.  It could be an endocrine tumor.  It could be a cardiac rhythm problem (good God I hope I don't need a pacemaker).  It could be anything.  I told my doctor my concerns about taking any further medications until we can at least narrow down the possibilities because I don't want to shock my metabolism into failure and end up like my mom.  My mom was put on a blood pressure medication even though she had variable BP like I am having.  She ended up having an anaphylactic episode, was on life support for 3 days, and became deathly allergic to every medicine she had been taking at that time.  They had to take her off all meds completely, and when they tried to introduce them again she was allergic to almost anything they gave her, even insulin.  She can't take Novolog for her diabetes and that is what her insurance wants to pay for, so she has to fight every year to get Humalog covered.  She is allergic to the dyes used for medical imaging, so they have to pre-treat her before imaging and monitor her after.  My doctor is on-board with the use of medication for my BP only if I am in absolute red-zone danger consistently and gave me a number to watch for.

 

Ironically, my primary doctor is the Medical Director for the health system.  I don't know if you read my rant about the nurse practitioner that tried to kill me due to ignorance, but I filed a complaint with the health system and they initiated a Service Recovery Report, which is sent to the Medical Director to address.  Probably the luckiest thing that has happened for me lately, because since she is my primary doctor and has been for over 10 years, she is familiar with my health history and knows I am not a difficult patient to deal with.  I never considered splitting my dose of duloxetine to spread it out over a day, but it might not hurt to try splitting it in half, take 15mg in the morning as usual, and 15mg at bedtime about 12 hours apart.  The half life is about 12 hours (ranges 8-17 hours according to the literature) and steady-state is achieved in about 3 days which actually makes sense as my discontinuation symptoms appear 2-4 days after I start the lower dose.  If I am really sensitive to the change in concentration in my blood plasma, I might need to consider taking the dose every 12 hours and taper each dose equally to maintain a relatively stable concentration in my system until I reach 0.  It is going to be complicated as hell, but at least I have relevant education and work background in pharmaceuticals that I can do it without too much brain-strain.  I feel really bad though when I think about those that end up going through this and don't understand what is happening and their doctor may not even acknowledge discontinuation syndrome is real and educate them in how to make it through without dying (I mean figuratively really, but there are times when I truly think this could literally kill me).


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#20 sk8rmama24

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Posted 27 April 2018 - 08:17 PM

I don't know if this is somewhere else in the forum, but I am going to add it here anyway.  PAWS- post-acute withdrawal syndrome

It's not specific to just duloxetine or antidepressants, more of an all-encompassing condition that includes illicit drugs, alcohol, opiates, etc.

What stands out to me is the way the symptoms of PAWS can come and go without a concrete cause, and that the symptoms will intensify with physical or psychological triggers, including compounding severity due the PAWS itself.  My stress level would have increased in close proximity to mid-April since that puts me 1 month from graduating from my college program.  Autonomic disturbances seems very plausible, since my symptoms do not appear to respond to treatment or caused by anything external.

 

Common symptoms of post-acute withdrawal syndrome are:

Symptoms occur intermittently, but are not always present. They are made worse by stress or other triggers and may arise at unexpected times and for no apparent reason. They may last for a short while or longer. Any of the following may trigger a temporary return or worsening of the symptoms of post-acute withdrawal syndrome:

  • Stressful and/or frustrating situations
  • Multitasking
  • Feelings of anxietyfearfulness or anger
  • Social conflicts
  • Unrealistic expectations of oneself

#21 fishinghat

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Posted 28 April 2018 - 04:53 PM

It sounds like your heart situation may be genetic but it certainly is time for a specialist.

The PAWS information had been posted a long time ago but this is worth a new post for those who haven't seen it before.
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#22 sk8rmama24

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Posted 28 April 2018 - 05:22 PM

I wish there was more out there about PAWS that occurs when discontinuing a prescribed medication.  Even from a medical billing and coding perspective, the syndrome is not medically recognized, there is no approved diagnosis code for it which means if you needed any medical treatment for it, it would be very difficult to have it covered.

 

I wouldn't be surprised if my cardiac issues were genetic.  I seem to have a few genetic related issues with a strong family pattern (as in every female is affected).  What really stinks now is that I have to delay my ankle surgery even more because now I will require a cardiac clearance, and I still haven't been evaluated yet.  Now I am unsure about whether or not to temporarily stop my job search until I have answers about my cardiovascular issues and am completely done with ankle surgeries.  My SSDI claim is still being considered, and I just got notice from my attorney to fill out some updated information to send to SSA for examination.  If SSA approves my claim with this new medical data, I won't need a hearing.  If they don't approve it, a hearing will be scheduled.  I don't really want to be on disability, I'd rather work, but I have a lot of limitations right now and haven't been able to work since 2014 and finding an employer that would accommodate is proving impossible.

 

I swear I have more specialists than friends.  The upside is that I already had a term life insurance policy in place before my health took a nosedive.  Now I only wish I had sprung for a term longer than 20 years though when my premium would have been locked and affordable.

It sounds like your heart situation may be genetic but it certainly is time for a specialist.

The PAWS information had been posted a long time ago but this is worth a new post for those who haven't seen it before.


#23 sk8rmama24

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Posted 29 April 2018 - 03:06 PM

Now I can add sporadic changes in blood sugar levels to the list.  I could understand if my blood sugar went up and my blood pressure went up, because those are interrelated.  But my blood pressure went up, and my blood sugar went down, so now my insulin must be wonky?  But everything seems to be jumping around, and I am clueless.  If all of this is actually due to the stress I am under, then how would I even treat it?  Progressive relaxation and deep breathing don't have an effect on reducing my heart rate or blood pressure when it jumps.  Now I am wondering if it is a hormonal issue that is causing the cardiac issue.  But all my systems are messed up.


#24 fishinghat

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Posted 29 April 2018 - 04:16 PM

Cymbalta, both during use and withdrawal, is famous for causing swings in blood sugar. This usually fades away around month 4 or 5 off the C. There has been some speculation that it may effect insulin levels but what I have read in the medical journals on deal with when you are on it and not with withdrawal. What I read was inconclusive in my way of thinking anyway.
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#25 sk8rmama24

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Posted 29 April 2018 - 08:49 PM

I am starting to wonder if I had problems with blood sugar and insulin before I ever took medications at all.  Diabetes type 2 runs in my family, and I have been symptomatic going back to childhood, but my blood tests always come back within range. If anything, I would get symptoms of hypoglycemia, especially if I was sick, but I never tested my blood sugar levels to see if they were low.  There was a short period of time I had elevated cholesterol as a child, but it resolved and I never had high cholesterol until my last physical in 2017.  I got checked after 6 months, and my cholesterol was still high but dropping.  I hadn't really changed my diet.

Now that I think about my pregnancy in 2006, I experienced symptoms of hypoglycemia in the first 8 weeks.  My weight gain was odd though.  It started level, and then my one appointment before Thanksgiving, I had gained 7 pounds in a month.  The nurse admonished me for overeating, which I wasn't because I got morning sickness during the second trimester instead of the first.  My check-up the following month, I had lost 2 pounds, which then caused the doctor to worry I wasn't eating because losing weight as the pregnancy progresses isn't good.  Then the weight gain leveled off again until the last month, in which it increased again.  My glucose-tolerance test was normal though, so I was never diagnosed with gestational diabetes.  When my daughter was born, she was symptomatic for being born of a diabetic mother.  She was large in size and had hypoglycemia and was in the NICU for 3 days until it stabilized.  My doctor ordered an A1C to see if I developed diabetes after the GTT, but the A1C was within limits, I was not diabetic.

I just stumbled on a condition where someone is resistant to insulin and they have high insulin levels in their blood pretty constant.  Blood sugar levels tend to be irregular (though hypoglycemia tends to occur around 10am, 2pm and 3-4pm) as the body tries to regulate itself and eventually the pancreas can't keep up with the insulin secretion and then the person is typically diagnosed as diabetic because the blood sugar is now chronically elevated, but would only be caught by chance during a single fasting test, so hyperinsulinemia is not always diagnosed until it effects other body systems as well, ironically in the third to fourth decade of life (which is where I am at).  I also read that adrenal function impacts insulin production as well, but most physicians do not correlate adrenal fatigue or insufficiency because they are testing blood sugar levels, not insulin levels and aren't familiar with the role of adrenal hormones in glucose regulation.  So if I already had high insulin levels before taking duloxetine, I am sure the medication isn't helping my cause any and could be exacerbating the problem if I secrete too much insulin.  I also had been having pain in my upper left abdomen recently, usually after eating.  I wrote it off as indigestion but the pain is sharp and to the side of my stomach and didn't feel like the gastric pain I had years ago when I had an eroded area in my stomach after taking Naproxen.  That could actually be caused by pancreatic inflammation and I just didn't think about it.

I have an appointment with a cardiologist scheduled, but I bet I will end up with a referral to an endocrinologist before this is all over.

Cymbalta, both during use and withdrawal, is famous for causing swings in blood sugar. This usually fades away around month 4 or 5 off the C. There has been some speculation that it may effect insulin levels but what I have read in the medical journals on deal with when you are on it and not with withdrawal. What I read was inconclusive in my way of thinking anyway.


#26 fishinghat

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Posted 30 April 2018 - 08:06 AM

You know sk8mama. you are very knowledgeable. I really can't add anything to your discussion. I have been really lucky to have a great endocrinologist for over 30 years. (I am way past my 4th decade of life, lol.)  He just recently retired. If you are in a vulnerable place when it comes to diabetes I am sure you have the knowledge to keep it under control with no need for medication. Good luck with the cardiologist and be sure and let us know how it turns out. Will post a little Cymbalta/cardiac info for your entertainment. :lol:

 

God bless.


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#27 fishinghat

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Posted 30 April 2018 - 08:08 AM

Cymbalta and the Heart

https://www.ncbi.nlm...pubmed/27130441
Differential inhibition of cardiac and neuronal Na(+) channels by the selective serotonin-norepinephrine reuptake inhibitors duloxetine and venlafaxine.

https://www.ncbi.nlm...pubmed/23666493
"Whereas inhibitory effects of duloxetine seem negligible under therapeutically relevant concentrations, hERG block should be considered in cases of duloxetine overdose and when administering duloxetine to patients susceptible to drug-induced QT prolongation."

https://www.ncbi.nlm...pubmed/23422380
"In conclusion, in healthy adults exposed to DLX (Cymbalta) or ESC, no clinically significant effects on HRV (heart rate variability) were observed."

https://www.ncbi.nlm...pubmed/22163139
Abstract
Takotsubo cardiomyopathy is characterized by transient multisegmental left ventricular dysfunction, dynamic electrocardiographic changes that mimic acute myocardial infarction, and the absence of obstructive coronary disease. Takotsubo cardiomyopathy has been solidly associated with antecedent emotional and physical stressors that trigger catecholamine surges, which lead to coronary vasospasm or direct myocardial injury. Some medications can also cause catecholamine surges, although this phenomenon is not as well described. Duloxetine is a combined serotonin and norepinephrine reuptake inhibitor (SNRI). The basic goal of SNRIs is to increase catecholamine levels in neuronal tissue. However, the increased catecholamine levels may also affect the cardiovascular system.Herein, we report the case of a 59-year-old woman whose takotsubo cardiomyopathy was temporally associated with the titration of duloxetine. The duloxetine therapy was subsequently discontinued, and the patient's left ventricular function recovered completely 1 month after the index event. The purpose of this report is to alert clinicians to a possible association between SNRI medications and takotsubo cardiomyopathy.

https://www.ncbi.nlm...pubmed/18728105
Duloxetine-associated tachycardia
"Clinicians should be aware of the possibility of clinically significant tachycardia in patients receiving duloxetine, even in low doses."

https://www.ncbi.nlm...pubmed/18445706
Heart failure worsening and exacerbation after venlafaxine and duloxetine therapy.
"Use of drugs that increase serum norepinephrine levels, such as the SNRIs, may be potentially deleterious in individuals with unstable or advanced HF. These medications should be avoided or used with caution and monitored regularly in this patient population."

https://dailymed.nlm...f2-c185fbad64ba
"Cardiac Disorders — Frequent: palpitations; Infrequent: myocardial infarction and tachycardia. "
Post Marketing reports - supraventricular arrhythmia,

http://www.cymbaltaw...tion#entry70794
Information on Heart conditions and Cymbalta


#28 sk8rmama24

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Posted 01 May 2018 - 07:32 PM

Thank you for the Cymbalta/cardiac info.  If I didn't feel like I was having a heart attack every other day, I might be more entertained.  I was in the ER yesterday, and admitted overnight for observation, for what essentially presented as a textbook heart attack.  Multiple EKGs, CT scan, X-ray, blood tests, and I was discharged feeling worse than when I went in initially, but no obvious cardiac damage until further testing.  But this will be the second time since April 10th I have landed in the ER with heart rate and blood pressure abnormalities.  I was kicked out with a prescribed beta-blocker and still following-up with the cardiologist.

 

I had a panic attack in 2010, when I stopped taking Zoloft after 3 days due to an adverse reaction.  But that was pretty much the only one, and it felt different than what is happening recently, and I didn't think a panic attack would cause swelling, or sweating, or fainting.  But I guess it is possible I have developed a severe panic disorder because the symptoms last beyond what is typical for a panic attack, and would be occurring more frequently.  Since I am already on an antidepressant, another medication would be needed if it was a panic disorder.  But my blood pressure and heart rate jumped from hypotensive to hypertensive, 120 BPM to 60 BPM to 120 BPM again within 10 minutes, and my highest pulse rate was 154 BPM.  My heart rate remained high for about 7 hours after the initial jumps.

 

But this will be good info to bring to my increasing number of specialty doctors.

You know sk8mama. you are very knowledgeable. I really can't add anything to your discussion. I have been really lucky to have a great endocrinologist for over 30 years. (I am way past my 4th decade of life, lol.)  He just recently retired. If you are in a vulnerable place when it comes to diabetes I am sure you have the knowledge to keep it under control with no need for medication. Good luck with the cardiologist and be sure and let us know how it turns out. Will post a little Cymbalta/cardiac info for your entertainment. :lol:

 

God bless.


#29 fishinghat

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Posted 02 May 2018 - 07:01 AM

Sorry for the problems. Periods of tachycardia can occur during use and in withdrawal but bI have never seen such up and down yoyo effect. I wish I could help.



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