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#1 kathyms3150

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Posted 31 May 2014 - 01:52 PM

Hi, I'm new to the forum, and terrified. Since my teens I've struggled with depression and anxiety. Tried lots of therapists, none of them helped. Had ETC but it didn't work. Tried just about every med, none helped me much. About 8 years ago I went to a new doctor and he put me on Cymbalta and Wellbutrin. That combination made me feel better than I had in years. About a year ago I felt the meds becoming less effective. In January my doctor had me try to get off Cymbalta so I could try some newer meds. I couldn't do it, the withdrawal was awful so she put me back on Cymbalta. I have to try again so I can have a better quality of life. I've started weaning off it a couple weeks ago. I went from 120 mgs to 90 to 60. Yesterday the withdrawal started getting bad, major anxiety, flu like aches, nausea, dizziness etc. Tomorrow I'm supposed to go down to 30mgs. My doctor wants me to alternate, one day on 30 the next on 60. I've read horror stories here plus I know from last time I tried to get off of it how bad it can be. I told her about taking some beads out but she said not to. She also started me on a low dose of Brintellix, a new med. I take Klonopin for anxiety. I don't want to be on any meds but I have to. I don't know if I can do this, I feel so sick already. Is there any hope of feeling okay again? I've never been so afraid in my life. Sorry this is so long. Thanks..  Kathy


#2 Kat1523

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Posted 31 May 2014 - 02:17 PM

Kathy, I wish I could give you advice, but I know there are plenty of people on this site that can and will give you some words of advice. You are not alone, I know that's not much, but it helps for me to know there are other people that are going through or have gone through the same thing I am. Hang in there and I'm sure the advice will be coming soon.

#3 kathyms3150

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Posted 31 May 2014 - 05:47 PM

Hi Kat. Thanks for replying to my post. I'm glad to know others understand, but sorry that any of us are going through this. I'm so afraid I'll never be able to get off Cymbalta. Are you having a hard time too?


#4 FiveNotions

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Posted 31 May 2014 - 06:23 PM

Kathy, as I've said to others elsewhere here when they say their docs told them to step down huge amounts and/ or alternate days....your doc is a jackass! And a royal one at that for actually telling you not to remove beads.....and feel free to tell her I said so... ;-)

Reinstate at the dose where you can feel comfortable and get stabilized....then use the bead counting method...others here can give you details...I quit cold turkey, and I say from experience....bead count!

Go slowly....very slowly....and you'll get through this just fine!

Stay with us here and keep posting...we'll do everything we can to help you!

#5 fishinghat

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Posted 31 May 2014 - 06:39 PM

FN is absolutely right.

 

I don't know any way to put this but that your dr (any many others) is a complete idiot. Cymbalta has a half life of 12 hours. If you take a 30 mg capsule in the morning then by the nest morning your blood Cymbalta levels have dropped 75%!!  That second morning you take a 60 mg capsule and drive your blood levels way up only to drop 75% by the next morning.  Dumb You are repeating your withdrawals over and over again as you jack up the dose one day and lower it the next. Most drs don't take this withdrawal seriously because when they are trained by the pharm company they are told it is no be deal.


#6 kathyms3150

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Posted 31 May 2014 - 06:45 PM

Five Notions, thanks so much for your reply. I'll call my doc on Monday and ask her about the bead counting, and going down more slowly. I won't tell her she's a jackass..lol.  Anxiety seems to be the worst symptom I'm having and I can't deal with it. My eyes also hurt really bad and I'm so afraid the pain will be permanent.  I want to get this over with as quickly as possible, but I'm afraid it's going to last for months or longer. Thanks for being so supportive.


#7 FiveNotions

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Posted 31 May 2014 - 06:49 PM

Kathy, do not ask your doc. Tell her....you are in charge here.... ;-)

#8 thismoment

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Posted 31 May 2014 - 06:51 PM

kathyms3150

FN is right.

I'm sorry to hear your physician is simply making up that withdrawal regimen- Eli Lilly (the good folks that cook the stuff) do not recommend what your doctor is advising. Eli Lilly says taper off slowly with NO STEPS. They say if you encounter a difficult phase, slow down or even raise the dosage some until you stabilize, then continue tapering off.

Eli Lilly has not, however, developed a protocol for safe withdrawal from Cymbalta. Further, while they recommend slow tapering, they advise against opening the capsules- so that's a built-in contradiction: taper slowly with no steps, but DO NOT open the capsules!

Of course you must open the capsules to taper off slowly. Your doctor's withdrawal program is well-known: it's called Cold Turkey.

You have some decisions to ponder going forward. Maybe consider a new physician.

#9 FiveNotions

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Posted 31 May 2014 - 06:51 PM

Also, it might help to have an rx for benzos on hand to help you manage the anxiety.....

#10 kathyms3150

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Posted 31 May 2014 - 06:53 PM

I totally understand what you're saying Fishinghat about alternating the dose, it makes perfect sense. When I told my doc about the bead counting she told me not to read things people post online. But like you said I don't want to keep repeating the withdrawal affects. I'm so afraid that my brain is screwed up from Cymbalta and I won't ever be able to get off it. I don't want to be on any of these drugs but I was hospitalized because of the depression/anxiety before I started taking them. I do believe it's a physical disease. I'm in such a state of panic I don't know what to do. Sorry if I'm not making sense.


#11 kathyms3150

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Posted 31 May 2014 - 06:56 PM

You're right Five Notions. I just don't know if I can do the bead counting because I'm so shaky. I have some Valium and Klonopin and they help a little, not much because the anxiety is that bad.


#12 kathyms3150

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Posted 31 May 2014 - 07:02 PM

Thanks thismoment.  I've come off many meds before with no problems. I don't know what it is about the Cymbalta. Plus back in February my insurance started only paying for the generic and I did feel a difference when I started taking it. I live in a very rural area and there aren't many docs around unfortunately.


#13 FiveNotions

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Posted 31 May 2014 - 07:05 PM

Kathy, you're making perfect sense!

Yes, you will get off this drug!

Right now you feel crappy....that's why we call the poison crapalta.....

Just take it easy....one thing at a time....first, get yourself back to feeling stable on whatever dose of the drug you need....next, give yourself a few days...even a week or two...to settle down ....use that time to continue reading this forum...and to develop your own weaning plan....

Do you have enough crapalta on hand that you can up your dose right away? If so, reinstate .....if not, just hang in there....you'll get through this!

Also, Give your doc this website address.....tell her to venture outside of her tiny little world view....which, by the way, seems to be entirely based on what the drug company reps tell her....let her read some of the posts here....

#14 FiveNotions

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Posted 31 May 2014 - 07:08 PM

Don't mix the Valium and the klonopin....a dangerous combo.....

Yes, you can handle the bead counting....it's a pain in the butt because of the small size of the beads....but yes, you can do it....Fishinghat and others will walk you through it....

Pretty soon you'll be "an old hand" and helping others who are new here!

#15 thismoment

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Posted 31 May 2014 - 07:09 PM

kathy

Get medication for the anxiety. Line up a psychotherapist.

Taper off slowly, with no big steps, by opening the capsules and bead-counting over a period of 90 days. (We can tell you exactly how to do that).

Your brain is not screwed up, and you will recover.

There's no evidence to conclude this is a physical disease, but it certainly is a physical condition.

I know you are confused, frightened, and feeling threatened. Take some time to talk things over with your family. Get a second medical opinion on a withdrawal strategy. I tapered off by counting beads, and in the beginning I was as confused as you are now- but I got through and so will you!

#16 FiveNotions

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Posted 31 May 2014 - 07:11 PM

Ah, the generic....quite a few of us have had problems with it....I had a horrid reaction to it....got switched when I lost my insurance....that's when I stopped cold turkey....also, there are fewer beads to remove...which means it's harder to come down in small small increments....

Any chance you can scrounge up enuf $$ to but a small supply of the brand to use for your weaning process?

#17 kathyms3150

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Posted 31 May 2014 - 07:17 PM

FiveNotions,  I wish I felt as confident as you that I'll get off this. I'm sorry I'm in such a state of panic. I'm not sure if I have enough pills to go back up, and I think in a way I feel like I've made it down to 60 from 120 and I want to get it over with. I don't know what the right thing is to do. I will give her the address of the website, but I can't guarantee that she'll read it.  I've been mixing the Valium and Klonopin because I have so much Valium and I'm supposed to be taking Klonopin and I'm afraid of running out since I sometimes need an extra one.  Are you okay, have you been able to get off Cymbalta with no lingering effects?

I'm going to go try to eat, having a hard time with that. I'll probably be back on later. Thanks so much for all your support!


#18 Kat1523

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Posted 31 May 2014 - 07:22 PM

Kathy, I am having a hard time, but am taking one day at a time. I have considerable manic episodes, major hot flashes and I also have started the brain zaps 3 days ago. I wake up with a massive migraine. I am drinking lots of water and trying to go on walks when I feel agitated. It helps to know that people here truly care, and again, one day at a time. Hang in there and breathe, you will make it through!

#19 FiveNotions

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Posted 31 May 2014 - 07:30 PM

Easy does it Kathy....there is hope, there is life after cymbalta, and you can, indeed, get off it.... ,

I was on 60 mg for 7-8 years....as I said above, I quit cold turkey....I didn't have a doctor because I didn't have insurance....and I didn't have any benzos to ease the anxiety....I'm almost 61 yrs old, and was in lousy physical condition to start with....so, I had a pretty rough ride...the first 4 weeks were the hardest...

That said, today marks my 6th month of the poison, and I feel great most of the time....I have some lingering cognitive issues...which may be partly due to age...I don't know...bad concentration and my short term memory is like Swiss cheese .... bit I have my life back! ;-)

I also struggle with anxiety...but, I now have a doc...also a jackass, by the way....but I got him to give me an rx for a benzo....it helps to know I have it "just in case".....all in all, I'm able to manage the anxiety without meds and without going into full blown panic....

Also, I should have mentioned way earlier in this thread...I, like you, am also on wellbutrin....300 mg xl.....I stayed on it during withdrawal...and intend to do so for about a year...then, my plan is to try discontinuing that as well....if I can, wonderful...if not, so be it....

#20 fishinghat

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Posted 31 May 2014 - 07:53 PM

Hey Kathy. Don't feel to bad about your situation. We have all been there and understand the feelings you are having. They will get better. It will take time and patience.

 

Bead counting, is where you open the cymbalta capsule each day and remove a few beads, usually 2 or 3. So the first day you remove 3 beads, the next day 6 beads, the next 9 beads etc. This provides for a slow steady withdrawal. If symptoms get to bad you just hold at that dosage for a while until you stabilize. Then start dropping again. Be aware that for most the last few beads give the worse withdrawal. Be prepared to slow down when you get to the very end. Now this is just an example. Some can only remove 1 bead a day and others 7 or 8 beads a day. You will have to play with it a little bit to find what works for you. This doesn't mean you won't have withdrawal but it will be lighter and you will have some control over it.


#21 kathyms3150

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Posted 31 May 2014 - 09:36 PM

Kathy, I am having a hard time, but am taking one day at a time. I have considerable manic episodes, major hot flashes and I also have started the brain zaps 3 days ago. I wake up with a massive migraine. I am drinking lots of water and trying to go on walks when I feel agitated. It helps to know that people here truly care, and again, one day at a time. Hang in there and breathe, you will make it through!

Kat, I'm sorry that you're having a hard time also. I'm also having the hot flashes then I get cold. I've had a few brain zaps. I'm having a major issue with breathing from the anxiety. I can tell people here really do care. All we can do is take it one day at a time, but it feels like there are so many days of this that we have to get through.


#22 kathyms3150

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Posted 31 May 2014 - 09:41 PM

kathy

Get medication for the anxiety. Line up a psychotherapist.

Taper off slowly, with no big steps, by opening the capsules and bead-counting over a period of 90 days. (We can tell you exactly how to do that).

Your brain is not screwed up, and you will recover.

There's no evidence to conclude this is a physical disease, but it certainly is a physical condition.

I know you are confused, frightened, and feeling threatened. Take some time to talk things over with your family. Get a second medical opinion on a withdrawal strategy. I tapered off by counting beads, and in the beginning I was as confused as you are now- but I got through and so will you!

Thanks this moment.  You're words give me hope, and I'm so glad that you got through this.


#23 kathyms3150

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Posted 31 May 2014 - 09:47 PM

Ah, the generic....quite a few of us have had problems with it....I had a horrid reaction to it....got switched when I lost my insurance....that's when I stopped cold turkey....also, there are fewer beads to remove...which means it's harder to come down in small small increments....

Any chance you can scrounge up enuf $$ to but a small supply of the brand to use for your weaning process?

I can't believe how many people are having a hard time with the generic. I think I can come up with the money of the brand for the weaning process. My doctor sent something to my insurance company to approve the brand for me but I ended up getting the generic anyway. Not sure what's going on with that.


#24 kathyms3150

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Posted 31 May 2014 - 10:12 PM

Easy does it Kathy....there is hope, there is life after cymbalta, and you can, indeed, get off it.... ,

I was on 60 mg for 7-8 years....as I said above, I quit cold turkey....I didn't have a doctor because I didn't have insurance....and I didn't have any benzos to ease the anxiety....I'm almost 61 yrs old, and was in lousy physical condition to start with....so, I had a pretty rough ride...the first 4 weeks were the hardest...

That said, today marks my 6th month of the poison, and I feel great most of the time....I have some lingering cognitive issues...which may be partly due to age...I don't know...bad concentration and my short term memory is like Swiss cheese .... bit I have my life back! ;-)

I also struggle with anxiety...but, I now have a doc...also a jackass, by the way....but I got him to give me an rx for a benzo....it helps to know I have it "just in case".....all in all, I'm able to manage the anxiety without meds and without going into full blown panic....

Also, I should have mentioned way earlier in this thread...I, like you, am also on wellbutrin....300 mg xl.....I stayed on it during withdrawal...and intend to do so for about a year...then, my plan is to try discontinuing that as well....if I can, wonderful...if not, so be it....

Congrats FiveNotions on being off Cymbalta for 6 months!  That's great and I give you a lot of credit for doing it cold turkey. Having a little problem with memory and concentration isn't too bad, I have that myself. Glad that you have a doc now and have some benzodiazepines just in case. I hope you'll eventually be able to get off the Wellbutrin, but if you can't that's okay. I'm feeling a little more hopeful (at least for the moment).  I hope you don't mind me telling you that's me and my only child Kate in the picture. It was taken almost 6 years ago, I was feeling good on the Cymbalta. Anyway, about 6 months later I lost her in a terrible car accident. Needless to say that doesn't help my mood. I often wonder if living with the grief for over 5 years slowly caused the med to stop working. I tried grief therapy but nothing can take the pain of losing a child away.


#25 kathyms3150

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Posted 31 May 2014 - 10:22 PM

Hey Kathy. Don't feel to bad about your situation. We have all been there and understand the feelings you are having. They will get better. It will take time and patience.

 

Bead counting, is where you open the cymbalta capsule each day and remove a few beads, usually 2 or 3. So the first day you remove 3 beads, the next day 6 beads, the next 9 beads etc. This provides for a slow steady withdrawal. If symptoms get to bad you just hold at that dosage for a while until you stabilize. Then start dropping again. Be aware that for most the last few beads give the worse withdrawal. Be prepared to slow down when you get to the very end. Now this is just an example. Some can only remove 1 bead a day and others 7 or 8 beads a day. You will have to play with it a little bit to find what works for you. This doesn't mean you won't have withdrawal but it will be lighter and you will have some control over it.

Fishinghat, it means a lot to know you and the others understand, and I'm not losing it. Thanks for explaining how to do the bead counting. It just sounds so overwhelming right now. Like I said above, I've come off other meds and never had problems like this. I wish there were a faster way to do this.


#26 FiveNotions

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Posted 31 May 2014 - 10:49 PM

Oh Kathy, I am so deeply sorry about your daughter....another one of us also went through this, ended up on cymbalta and is now recovering and healing from the drug...and her intimate loss....I won't name names....she'll post about it when she's ready....I like it that you've used a picture of you and Kate as your avatar.....her smile radiates joy.....living with grief changes a lot of things....but, for me, it was the cymbalta that changed things....at first, it helped...then, it began to numb my emotions completely.....now that I'm off it I'm living the emotions associated with events forms years ago....sadness, anger, joy....the full range of human emotions that I didn't have for the 7-8 years I was on the poison.....

This may occur for you, and unexpectedly....and if fresh grieving for your daughter may arise, you might want to have a therapist to talk to.....it would help a great deal.....

You are also welcome to always, at any time, post your feelings, vent, rant, cry...right here....we give excellent "group hugs"!

#27 TryinginFL

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Posted 31 May 2014 - 11:13 PM

Welcome, Kathy!

 

I see you are already conversing with 3 of our most knowledgeable members and believe me, they know what they are talking about!  I, like FN, am a cold turkey survivor - almost 5 months now, but the experience of the trip to hell was one of the worst of my life, except...    I lost my daughter almost 5 yrs ago during open heart surgery and that is when I was put on Cymbalta - this was just 6 months after I lost my mother.  I was willing to take anything and did not even think about doing any research on the drug as I was looking for a "quick fix" to the depression and anxiety . I know that you have been here and I am so sorry for your loss.

 

I have fibro and arthritis so I had Alprazolam and Hydrocodone and did not hesitate to use them!  I still do, but no where near the amount I was taking when going through the worst part of the withdrawal.  Please do everything you can to make yourself comfortable and you MUST be kind to yourself....  try to relax, don't overdo and get as much rest as you can - I know I slept a lot and it was a great escape as well!

 

The short-term memory seems to be a constant with the majority of us - mine is improving, but maybe it will never be back totally - then again, age may have something to do with it, but I noticed it deteriorating while I was on the poison.

 

I hope that you have family near that will lend their support - I only have 2 sons - both on the west coast and they never truly understood any of this - but if I could do it, so can you!  You WILL make it through this!  We will help in every way possible.

 

I see a psychologist (now only once a month) and don't know what I would have done without him.  We all need someone to talk with and he was my life saver! 

 

Please keep us posted and I wish you much support on this hideous journey :)

 

Liz


#28 ZappAlta

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Posted 01 June 2014 - 04:39 AM

Many on this great forum had doubts we would ever conquer getting off this medication .I sure did and yet got  through the torture now 8 months later. I did c/t and would never have had I found this site advising slow tapering . All of what you mentally and physically feel is W/D - Some will slowly decrease kinda weekly and keeping a daily little summary of how each day and hours you feel so helpless and discouraged will actually challenge you to keep going forward and repeating over and over to yourself 'this is only temporary' For me hiding out in my garden doing chores and short walks -listening to books on tapes etc really took my mind off .Keep posting here too !!!


#29 Wagtail

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Posted 01 June 2014 - 05:22 AM

Many on this great forum had doubts we would ever conquer getting off this medication .I sure did and yet got  through the torture now 8 months later. I did c/t and would never have had I found this site advising slow tapering . All of what you mentally and physically feel is W/D - Some will slowly decrease kinda weekly and keeping a daily little summary of how each day and hours you feel so helpless and discouraged will actually challenge you to keep going forward and repeating over and over to yourself 'this is only temporary' For me hiding out in my garden doing chores and short walks -listening to books on tapes etc really took my mind off .Keep posting here too !!!



ZappAlta , good to hear from you ...8 months now WOW , do you mind me asking how you're feeling & if you are still suffering any s/e's ?. I ask because I'm 61/2 months off now & although I feel a great deal better I still have some lingering uncomfortable s/e's .
:-)

#30 kathyms3150

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Posted 01 June 2014 - 10:25 AM

Thank you so much FiveNotions for your condolences. Kate was the joy of my life and thank you for saying that about her smile. Grief sure does change your life, you think about life differently. Yes, the Cymbalta does numb your emotions, I think most anti-depressants do. I noticed that when I tried to get off it a few months ago my grief increased and I'm starting to feel that way again.

Talking to a therapist is something I may want to do, but right now I'm feeling too sick to go out. I wouldn't want to drive with the dizziness.

So far I've noticed the anxiety to be with worst symptom of withdrawal, how did you deal with that?  The benzo's are barely touching it. I feel like I want to give up already and go back on Cymbalta, but I have to get through this.

Thanks for being so sweet and supportive.





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