22 replies to this topic

[TheComposer]

Please can someone help? I'm in week 6. Went from 60 to 30 for 7 days. Then went down one bead at a time till very last one. Completely off for around 2 weeks.


1. Nausea: Daily and inconsistent. Benedryl/Dramamine help sometimes, but not always. Zofran (anti nausea medication used for chemo) completely ineffective.

2. Powerful crying jags: Comes out of nowhere. Worse at night. Accompanied by hopelessness and feelings of no self worth. This may be the worst of my symptoms.

3. Hazy mind: Unable to string thoughts together. Cannot remember events from day before.

4. Apathy/Lethargy: Just want to sit and watch TV. Cannot do work, pay bills etc...

5. Guilt: Married one year ago, Sept 8th. I'm putting my saint of a husband through hell. He doesn't deserve this. Asked him to postpone anniversary celebration.

6. Pain: I have MS and Osteonecrosis in knees. Withdrawal compounds already existing pain.

7. Heartburn: Like chest is on fire.

8. Inconsistency: No day is the same, never know what to expect, no way to prepare in advance.


Does anyone out there feel like me? Will this end? I can live with anything as long as I know there is an end.

If anyone can spare some time, please give me your thoughts or ideas. Even your validation would mean a great deal.

[Bettyrose]

Hang in there Composer, it does get better. Hard to say exactly how long it will take, everyone is different. It took me about a month. THe crying jags and feelings of utter worthlessness I can identify with; also the lethargy & grogginess. Don't worry, you still have a brain and it's just got the brain-flu right about now. And if you start having really gory or crazy nightmares, do not worry too much. That is Cymbalta, not you.

I'm thinking from the name that music is important to you? Maybe grab the iPod or whatever and blast something uptempo and loud ... or calm and peaceable, whatever suits you. It works for me, not always but sometimes. Let us know how you're doing!

[TheComposer]

Dear Bettyrose,

Thank so much for your thoughtful and helpful response. It's so comforting to be able to speak with someone who can understand what you're going through. The various things I deal with are so hard to explain and so difficult for people to understand. As I wrote in my post, it's so hard to be dealing with so many symptoms, and not be available to those around me. And I want so much to have just one day where I am not constantly dealing with one difficulty (physical or emotional) or another. Thank you for taking the time to respond and wishing you the very best as well.

RVW

[tomitsu]

Dear Composer, please look up Bliss Johns' Recovery and Renewal book. It's like my bible and it helps to know you and I and countless many are not alone in this fight. It's not in your head, this withdrawal syndrome is very real. I cannot tell u how many doctors do not get it. It's mind boggling. Please of you can read this book. I promise it will help you.
I was on Cymbalta for about 6 years at 60mg. I had so many symptoms that I had no idea were caused by this med. I started my research and discovered Cymbalta was killing me!! I decided I would wean off and so I did with help of my MD. But he only weaned me down to 30mg for 30 days then zero!! Naturally I was in pure hell! I had all the withdrawal symptoms like nausea, diarrhea, brain zaps, brain fog, anxiety, depression, apathy, crying spells, cold chills, headaches, body aches, body twitches, weight loss, lethargy, suicide ideation. The anxiety and depression have me by the throat right now. Even after 7 months. I realize my body is still healing. I am living day by day. I try and eat as healthy as possible. I don't drink coffee or drink alcohol. I drink lots of water. I take all the Omega 3's,, the Vitamin D3's but I do not take much more. Only bc some supplement can make it things worse...so be careful.
Where do u live?

[tomitsu]

Composer, I know how you feel. My husband is a true saint. He has been there as much as he can. He has held me as I wept. He has held me when I wanted to lay down and die. The fear is so intense some days I cannot function. I had to step away from our business. No easy feat. We have to manage two locations: L.A. And Anchorage...3 months into my withdrawals I had to go up to AK. I did it but I went downhill from there. I was all alone and isolated from the world and going through this while my hubby was out of town. You can do this. Time heals...so they say.

[TheComposer]

Thank you so much Tomitsu. Your letter touched my heart and validated all of my fears and feelings. I cannot believe that that there are so many out there (yourself included) who know how I feel and who experience the same difficulties. The worst part is that I never know how I'm going to feel at any given moment. Yesterday, I dealt with nausea and migraine-like headaches all day. Today, aside from full body joint pain, I am riddled with fear. I feel scared/frightened; like I want to hide under the bed. This is a new one. I haven't felt this way yet. I guess it's just another symptom to add to the list.

I travel back and forth between Pennsylvania (where my husband's work is and where we have a home) to stay at my parents house in the NYC area (where I am originally from) so that I can continue to see my medical team. I once had a wonderful job here in the tri-state area but took a leave of absence last September when illness took over my life. I was a pediatric Speech therapist and Audiologist. I loved my job, my adorable young patients and my co-workers and now I feel as though I have nothing to offer the world. All I do each day is try to be comfortable moment by moment. This is not the contribution I intended to make to my husband or to society.

I am attempting to assemble an unofficial support group in the NYC area. Perhaps a group of us can meet face to face and help each other through this nightmare.
I also see a wonderful healer (her background is in Chiropractic medicine but she is also a master of Tai Chi-Chia and has an arsenal of holistic products that have helped with my ever changing symptoms). Since no medical doctor seems to have any integrity in this phenomenon and are not brave or honest enough to admit what being on Cymbalta and weaning off of Cymbalta does to the human body, I feel so blessed that I found a medical practitioner (effective, competent and humble) who successfully helps me manage my daily pain , discomfort and emotional turmoil. If I am able to assemble a group I will see if she would be willing to come and speak to us and offer her methods and products of healing. If you live in the area, I hope you would be able to join.

Either way, thank you for taking the time to respond and I wish you success in your journey. May it end for all of us soon!!!

[DonMH]

Hi
My heart goes out to you.My wife has just been admitted to Emergency with Serotonin uptake syndrome - she is having hallucinations and delusions and even small noises seem earth shattering to her.Do not use anti-nausea medications as they are contra-indicated with Cimbalta.Try natural products eg.fish oils but 3x the normal dose on the bottle ie.up to 9 capsules per day.Try dried ginger for the nausea or inhaling rubbing alcohol.Find a health food shop and find Lutein and L-Theanine. The L-Theanine will help relax you and help you to sleep. Do not take 5-HTP in case it triggers a reaction similar to my wife's. This syndrome can prove fatal on occasions.
Has anyone thought of using Skype and forming an on-line self help group?
My thoughts and prayers are with you.
DonMH

[Bettyrose]

Let your wife know we are all rooting for her, Don! Here's hoping she starts feeling more like herself soon, and can start on the road to recovery.

Do the people taking care of her in the hospital understand what's going on with her? (In particular, that these are drug induced symptoms?) Luckily she's got you at her side advocating for her, and you know what's going on ... I have met a couple of people who were not so lucky, when the doctors & other Emergency personnel decided they must be psychotic.

As for support groups ... Skype is one option I guess, or maybe we could start a "meetup" list where people in the same city or region can get together. I'd be glad to talk with anyone from Chicago

[neyney8870]

hi i stopped taking it 3 days ago i am very irritable i have really bad pain near my ear i had bellspalsy 3 yrs ago now the nerve near my ear is hurting really bad my doctor is going to give me free samples of cymbalta the reason i stopped taking it is the cost so when i get the samples i am going to try to wean of the pill my boss took the capsel and opened it up and counted the crystals inside and took so many a day she counted them then she took less and less-+

[DonMH]

If you have coverage try and get a small dose of Prozac and Lorazepam or clonazepam. This will help limit the effects of the Cymbalta. Hang in there kid; you can do it. Try some natural products as well : lecithin,Gingseng, fish oills,active acidophilus for the tummy problems. Don't hesitate to email me at any time. There is a quote i used to use in England ; "Noli Carborundum Illigitimi" which means "Don't let the bastards grind you down"!!!

Good luck and God bless

DonMH

[DonMH]

Hi Betty Rose

Thank you so much for your kind words. The nurses do not have a friggin clue. The consultant is in total denial - I faxed her a copy of the UK protocol for coming off Cymbalta, so she must realise she is up the "Proverbial creek". I am lucky to know the Senior Manager of Mental Health for the region. She is fully appraised of the situation and she is working on getting a replacement consultant as soon as possible. I was a Senior Clinical Biochemist in the UK for 31 years and the ineptitude of some medics frightens me. Self help groups may be a good idea. Cymbalta has been used for so many conditions - the medics have been handing it out like candy. I wonder if they have been getting a backhander from Eli Lilly?

My wife was really grim yesterday -I had to help her to have a shower, as her balance is terrible and she feels so groggy. I have lots of people praying for her and for the phsicians taking care of her. Luckily I had phoned my GP prior to having Sue admitted and he had phoned through to Emergency to explain what was happening. Otherwise they would have thought "Here comes another nutter"!!!

Bless you

DonMH

Let your wife know we are all rooting for her, Don! Here's hoping she starts feeling more like herself soon, and can start on the road to recovery.

Do the people taking care of her in the hospital understand what's going on with her? (In particular, that these are drug induced symptoms?) Luckily she's got you at her side advocating for her, and you know what's going on ... I have met a couple of people who were not so lucky, when the doctors & other Emergency personnel decided they must be psychotic.

As for support groups ... Skype is one option I guess, or maybe we could start a "meetup" list where people in the same city or region can get together. I'd be glad to talk with anyone from Chicago

[smeagol]

I have been off Cymbalta for 32 days. However, the withdrawal is getting worse from about one week ago. I have:

1) Headache
2) Premature Heart Beats
3) Tremor/Internal Shaking
4) Muscle tightness and pain at the left chest
5) Cramping in stomach and bloating belly
6) Rage

I am crazy now! I just don't understand why I am getting worse?!

I am in Toronto, Canada. There is a GNC store in a shopping mall just one block to my house. If I can drive tomorrow, I will go to GNC to buy some supplements to ease my anxiety and symptoms.

Here I have questions:

I saw someone mentioned L-Theanine and L-Tyrosine. I heard L-Tyrosine can help the withdrawal, however, I heard L-Tyrosine will worsen the headache/migraine. I never had migraine before but since 5 years ago the fxxking doctors put me onto Effexor (Cymbalta later), I started to have insane headaches!!! So shall I avoid the L-Tyrosine?

So L-Theanine is safe right? Will it ease my anxiety?

How about the Gemma Oryzanol? I heard Oryzanol will help the nerve system. But the side effect is hair loss and weight gain.

I want to make sure I get the right supplements to help me.

The doctor told me that what I am experiencing now is not withdrawal, it is the anxiety, it came back because I stopped Cymbalta. I feel angry and desperate!

[HollyDucky]

Hello all!

I began taking Cymbalta about 9-12 months ago for nerve pain and neuropathy in my outer thighs and for chronic lower back pain. I was then instructed to ween off of it per my doctor's instructions and am now on week 3 without having any Cymbalta in my system. Since I began to ween off I have become a complete and total "pod person". Below is a list of all the withdrawal side effects I have experienced that no one warned me about.

-sudden crying outbursts
-waves of nausea
-headaches
-brain zaps/pinches
-violent mood swings ranging from manic to deep depression
-loss of appetite
-increase in sensitivity to touch
-pins and needles feeling in fingers
-extreme numbness in hands/arm (have lost complete feeling in left hand for a few hours to the point of not being able to use it)
-random feelings of anger for no real reason
-sudden burst of energy followed by complete exhaustion (sleeping for 20-24 hrs)
-self seclusion followed by over indulgent in social interaction
-dizzy/lightheaded
-weak, no stamina or strength

Now, except for having some of my sensitivity to touch return in my thighs, I was not expecting any of this. Thank goodness my boyfriend has been so understanding and has not carted me off the the looney bin! I am so thankful to have found a forum like this! Obliviously, if there is something set up like this I cannot be the only one having a hard time! I have almost lost it so many times, just gotten so frustrated at nothing, my dog tripping me in the kitchen so I end up throwing a towel and plastic cup at him and scaring him so much he refused to come back into the kitchen to eat his dinner, crying random for no reason while fixing dinner, sleeping for 14 hours but ready to go back to bed after only being awake for 5.

Does anyone have an idea as to how long this effects last and have any of you experienced similar effects as me?

[Jon]

I have been off Cymbalta for 32 days. However, the withdrawal is getting worse from about one week ago. I have:

1) Headache
2) Premature Heart Beats
3) Tremor/Internal Shaking
4) Muscle tightness and pain at the left chest
5) Cramping in stomach and bloating belly
6) Rage

I am crazy now! I just don't understand why I am getting worse?!

I am in Toronto, Canada. There is a GNC store in a shopping mall just one block to my house. If I can drive tomorrow, I will go to GNC to buy some supplements to ease my anxiety and symptoms.

Here I have questions:

I saw someone mentioned L-Theanine and L-Tyrosine. I heard L-Tyrosine can help the withdrawal, however, I heard L-Tyrosine will worsen the headache/migraine. I never had migraine before but since 5 years ago the fxxking doctors put me onto Effexor (Cymbalta later), I started to have insane headaches!!! So shall I avoid the L-Tyrosine?

So L-Theanine is safe right? Will it ease my anxiety?

How about the Gemma Oryzanol? I heard Oryzanol will help the nerve system. But the side effect is hair loss and weight gain.

I want to make sure I get the right supplements to help me.

The doctor told me that what I am experiencing now is not withdrawal, it is the anxiety, it came back because I stopped Cymbalta. I feel angry and desperate!

Don't believe your Dr!!! I have been fighting this hell for over a year now. I had anxiety before Cymbalta, but it was a lot worse for a few months after quitting.

[smeagol]

Don't believe your Dr!!! I have been fighting this hell for over a year now. I had anxiety before Cymbalta, but it was a lot worse for a few months after quitting.

Hi Jon,

I have been suffering from the post-Cymbalta anxiety for 7 weeks. The GAD (Generic Anxiety Disorder and Panic Attack was the original reason the doctors put me onto Effexor, and then switched to Cymbalta) I've been taking Effexor for 4 years and Cymbalta 60 mg for 5 months. The Cymbalta is definitely a poison so with the doctor's permit I took 4+ months to wean it off. I completely came off Cymbalta by Aug 30th. Now 7 weeks passed, there is no sign the anxiety will fade away. I am taking 0.5mg Clonazepam at bed time. But during the daytime, when I really can't cope with the anxiety associated symptoms like tremor, muscle pain, headache and cramping stomach and bloating belly, I have to take either a 0.5mg Ativan or Clonazepam to get a relief. But I am really scared to updose these Benzo stuff (Ativan, Clonazepam, Xanax, whatever) and get addicted to it. I am so struggling.

We all know to be Cymbalta free is our goal. However, seems like the cost for me is: not coping after stop it. I am so sorry to see you have been fighting against it for over a year. How are you feeling now? Is your anxiety getting better? How long it will last as you mentioned it got a lot worse for a few months? How did you get it through?

My best wishes for you!

Stewart

[tomitsu]

I am 10 months free of Cymbalta and I am still in pure hell. I have windows which allow me to see the sunlight. But the bad days outweigh the good days. I cannot leave my bed most of the time. i can no longer drive. i have lost all sense of self. I cry and I scream out loud. It is horrifying. I have no hope that I will get better but my husband helps me to see this hope. I hope I make it. I am tested daily on whether I shoukd just end my life. Put everyone out of this misery. It's a hard road to travel. I feel so alone because no one understands. Doctors don't get it. I'm simply wasting away in my bed too scared to live. I have lost confidence in myself and my will to live is slipping.....I used to be a hard working person with energy and desire to live. Used To live to help others; others less fortunate than I. I used to volunteer to help wildlife....all this is gone. I cannot even earn a living.

[Heartfeathers]

I am 10 months free of Cymbalta and I am still in pure hell. I have windows which allow me to see the sunlight. But the bad days outweigh the good days. I cannot leave my bed most of the time. i can no longer drive. i have lost all sense of self. I cry and I scream out loud. It is horrifying. I have no hope that I will get better but my husband helps me to see this hope. I hope I make it. I am tested daily on whether I shoukd just end my life. Put everyone out of this misery. It's a hard road to travel. I feel so alone because no one understands. Doctors don't get it. I'm simply wasting away in my bed too scared to live. I have lost confidence in myself and my will to live is slipping.....I used to be a hard working person with energy and desire to live. Used To live to help others; others less fortunate than I. I used to volunteer to help wildlife....all this is gone. I cannot even earn a living.

Oh honey, I am right there with you!!   I am 9 months "free".    ( Free my ass!! This shit doesnt let you go!)   My life is gone.  I wake up in the mornings, turn to my husband and say "Shit, I'm still alive".   Not any way to live.... 

[laststraw]

My husband has been "bead counting," to go off Cymbalta for the last four weeks.  It has nearly torn our relationship apart, may still.  The jury is still out.  I am sitting here at 4:00 a.m. reading these posts about Cymbalta and the effects it has on a person while taking it and while trying to stop taking it.  I was shocked.  My husband has experienced all these side effects and then some while he was on it and now that he is trying to get off of it.  When he takes the drug, he seriously has been known to stay in bed for 16 hours straight at least three days out of the week.  We go no where, do nothing.  He has no joy left in things we used to enjoy together, i.e., a nice meal, a glass of wine.  Simple things like going to the grocery store always cause an argument, and forget about driving anywhere together.  His driving has become erratic, and he won't listen to anyone about anything.  Last night, we were discussing him leaving until either he is completely weaned off this drug and/or find some other resolution.  We really can't live this way any longer.  After reading these posts, no matter what happens, I intend to be more understanding about what he has been going through.  We are talking about a guy who never even took aspirin.  He was prescribed the Cymbalta for chonic pain, but we had no idea it was going to play with his mind and personality.  This has seriously been the most awful roller coaster ride, and we've been riding it for four years.

[lady2882Nancy]

I really wonder why anyone (drug companies and doctors) would think that giving a patient this med internally is a good idea when:

if it gets in your eye, it is corrosive;

if you accidently inhale it, it can cause longterm respiratory problems;

and if you get it on your skin, it can cause a severe rash

And if I had known all of this before, I would have refused to take it.

But noooooo, my dr was concerned because I was taking 5 or 6 extra-strength (400mg each) Ibuprofen every day so wanted me on this crap for my chronic pain.

I'm so glad I have somewhere to vent

Thank you all for putting up with me in withdrawals

[fishinghat]

Not only that lady2882 but nearly half the people who are put on cymalta for pain never get any benefit from it and then have to turn around and go through withdrawal to get back off it. I don't appreciate the withdrawal that I am going through but at least I did get some releif when I was using the medicine.

[lady2882Nancy]

yes at 30mg I had some relief but that went away at 60mg and the nausea and pain were so bad that with no appetite and the diarhea it caused (I have IBS) I lost 10 pounds in 11 days

Unfortunately the nausea with the withdrawals in the last half hour is worse now than ever

[FibroGal]

Ughh...all this talk makes me feel like a lab rat! that's not why I pay for medical insurance. OR maybe it is and they just didn't tell me (because I do read the fine print).

[lady2882Nancy]

Does anyone know if laststraw's hubbie came on here or how they are doing?