10 replies to this topic

[erin bridgid]

Hi,
I am new to the site. I am wondering if there is anyone out there who has suffered any sort of vestubular loss while weaning off Cymbalta? I wanted off of Cymbalta. I was taking 120mg/day. My Dr. took me down to 60mg/day for 7 days and then straight onto Pristique (sp?)
I followed the Dr. instructions. Febuary 13 was my last day taking the 60mg of Cymbalta, Febuary 14 was the first day of the Pristique. By about 10pm on the 14th my whole world was turned upside down. The last thing I remember happingn on that night was dropping off the sitter and starting back home, then everything turned upside down. I do not know how I got myself and my car home, not to mention getting in my house and to the bathroom which is where my husband found me. I had vertigo so badly I could not move without throwing up. In the moringing when I was not any better my husband researched Cymbalta withdrawls, we figured I was just having a really bad time getting off the drug. After 18 hours of vertigo and throwing up non-stop we finally called 911. They took me to the hospital and ended up keeping me for 3 days. With medication they got the throwing up under control, they could not get the vertigo to stop though. On the third day, the vertigo was better. I was still seeing double, could not focus, depth perception was totally off, and could not walk without a walker. The hospital told me I had an inner ear infection and would get better over the next few weeks. They sent me home. I went back to the neurologist after several days, he ordered my 2nd MRI, it came back clean again. He had no idea what to do with me. He was totally useless, told me I should be better. I ended up seeing and ear specialist. After 2 days of testing they discovered I had lost 100% of my balance center on my left side. I have had to learn to walk again. I can not tell you how awful this has been.
The timing on this whole thing is very strange. I can not help but wonder if the rapid weaning had something to do with it. Is there anyone out there who has had anything even close to this. At first they said I had Meniere's, I am not convinced that is what I am up against.
Whle I was in the hospital they put me back onto 60mg/day. I want off this stuff. Over the last 2 weeks I went down to 30mg/day. Today is my 3rd day on 20mg/day. The game plan is to do this dose for 14 days. I am hoping the brain zaps will stop once off this medicine. Not sure if it is the Cymbalta or the Vestibular loss causing them, or a combo of both? Thanks for any input.

erin

[yoursewsweet3]

Hi Erin,
I am so sorry you had to go through that. That is just awful. All the symptoms you have decribed sounds the same but 10 times more. I have alot of the same things but yours are to the extreme. You are probably very sensitive. My mom was like that. All her senses were amplified. You should read through the posts. Alot of us have the same things and some a little different. I think you might just be more sensitive. What makes it more frustrating is that no one even knows whats going on. I feel bad you had to go through that and no one knew what it was. I am just wondering now, how old is Cymbalta anyway. Are alot of our Dr.s not aware of the damage it is causing. People shouldnt have to suffer like this. I feel for you. For the vertigo feelings I take dramamine and bonine. Some people take benedryl for itchy skin and for congestion in their head. I really hope you start feeling better. If you read through the posts you will definetly learn alot. I am on my 11th day off of Cymbalta and feeling alot of what people have described. I learn something new everyday. Oh and Omega 3's have really helped me too. Please take care and its so important for us to read up on all this stuff. The people that are going through it are the ones that know the best. We know what works and dont work. I could go on and on about what to do but I would just be repeating what other people have wrote. If you cant read have someone read it for you.
God Bless and Take care!!
Shana

[Houdi]

Erin:

I am about one year Cymbalta free. But the drug did some damage to me. I lost so much weight that my ENT says my Eustachian tubes collapsed. That did cause me some vertigo and dizziness and my ears felt full and I could hear myself speak in my head like I had internal speakers turned up on loud. Now, can't pin point what did the actual Eustachian tube collapse thing cuz there was a collision of issues that started with profound weight loss (from Cymbalta). Then ears felt full. MD prescribed sudaphed and antibiotics, thought I had some type of infection in sinuses. No real relief of the ears feeling full and started being able to hear my own voice reverb in my ears when I spoke, so she did another round. Still losing weight. Next round didn't help so added steriods. No help. Off to the ENT. He said it could have been the drastic & fast weight loss, the sudaphed or the steroids. He didn't know if it could be the Cymbalta, not his expertise. He offered to put in tubes....yep, me and all the 4 year olds. There was a chance they would get better on their own. So, I waited. They are better, not completely though. But I can tolerate this.

I would like to offer this suggestion, don't reduce your Cymbalta dosage until your brain and body has enough time to adjust to the new dosage. Go by how you feel, not a schedule. You've had a really tough time of it. Dah, I didn't have to tell you THAT! Sorry.

Try ginger tea. Not ginger flavor, but real ginger root seeped in hot water for 5 minutes or more. (Scrap off the outside of the ginger root...skin like stuff. Then shred pieces for easy tea seeping. Freeze extra to keep fresh for long time.) Ginger is so good for the nausea and digestion. And it tastes really good.

The brain zaps will not stop when you quit taking the medication. It will take a while. It is from the withdrawal and lowering the dose. Give yourself some time and patience.

Best to you and your hubby. There is a great area on this forum for family members if he feels like posting. -Houdi-

[erin bridgid]

How nice to get some feed back. Thanks to you both! It helps to know there are other people out there who understand what it feels like to come off of this drug. I will get some ginger for sure and brew myself a cup of tea. First I have to find someone to take me to the store. The last time I was able to drive a car was the night this whole "thing" started. I completely understand what you mean when you talk about being able to hear yourself inside your own head! It is awful and so stinking tireing. That aspect has gotten much better. I am glad you did not end up having to get tubes in your ears. The less stuff you have to mess with the better. I will stay on 20mg until I feel more stabilized. I see your point in not trying to "stick" to 14 days. I do not need to make my situation any worse than it is. I so desperately want to feel normal again, whatever that means. My PT thinks she should be able to get me back to about 90%. I have been told it will most likely take at least a year, maybe two. I am not sure if the Cymbalta had anything to do with my situation or if it just happened to accure at the same time as this "virus" either way, I know it did not help the situation. My Dr. took me down way too fast. She had even told me if I wanted to, I could swith from taking the 120mg/day to 60mg/day for 4-5 days and then start the new one. Crazy! And thoughtless in my opinion. Ok, hope you all have a nice weekend. take care and thanks again for all the kind thoughts! :)

~erin

[ElaineB]

Hi, Erin,
So sorry you have been through so much. It's pretty unbelievable what this stuff does, and criminal that most doctors really don't have a clue...
I did the ginger tea and I also have a bag of crystallized ginger with me at all times...very helpful when in a moving vehicle. (Ugh, just thinking about it is making me woozy.) I wouldn't recommend trying to stop while on 20 mg. If you read some of the other message boards, they go into detail about opening the capsules and counting the beads to wean more slowly. I went from 2 weeks on 20 mg to 2 weeks on 10 mg , then about 2 weeks on 7.5 , then another couple of weeks on that dose adding 20 mg of Prozac, then off the Cymbalta and kept taking the Prozac for about 3 more weeks. The Prozac really helped with the transition. I am currently free from everything ...on day 3, actually, and I am feeling fairly well. Still have the waves of dizziness, unbelievably, but so much better.
I began this weaning process back in mid April and it has taken this long. I have read that only about 20% of people who take Cymbalta have experienced this severe withdrawal. Guess we are the lucky ones! Yours is a real horror story and I am wishing you a safe recovery. I am extremely thankful I found these message boards; they were so helpful to me in the beginning (even though at that point I was too sick to post)...now that I am seeing the light at the end of the tunnel, I feel motivated to extend the hope I received here to others.
I did learn a very valuable lesson from all of this. From now on, I am going to be very careful what I put into my body, and not just blindly take medication just because some doctor writes a prescription.

[ElaineB]

I just reread my post after posting it...I mistakenly wrote that I took the Prozac for 3 weeeks after ending the Cymbalta. It was for 2 weeks, not 3. :-)

[mundyam]

I can't believe all the postings I have been reading and saw yours and thought I'd comment to it. I have been taking 60 mg of cymbalta for about 2 years to aid with fibromyalgia related pain as a long term side affect from chemo therapy. My pain had been coming back so my Dr. decided to change my medications and told me to take 30 mg for 3 days and then stop. I have been sick ever since. The vertigo has been unbelievable and the nausea, head ache, brain lapses, tiredness, ear ringings, the list goes on. I have been off for 9 days now and the vertigo symstoms have remained. I have talked with my Dr. 3 seperate times and I don't think she realizes what is going on. I to was told I had a viral thing going on, was prescribed antivert 25 mg to help with the vertigo and nothing has touched it. My only hope is in reading other posts and seeing that with time this should go away. I hate that you have had to learn to walk again. If I even move my eyes back and forth with any sense of speed I get thrown into a vertigo episode and I have to use a computer for work. It has been horrific. I compare this to some of the days I felt following chemo therapy and never thought I would experience such. I feel better having found this site so I can see that what I'm dealing with is not my imagination. I hope you get through it and it anyone has any suggestions, please let me know.

[millwright]

Treat this situation as it is- A terrible withdrawal from a horrific drug. You will go through terrible effects, but they will all stop. Stay in bed for the first while if you have to. If you cant operate normally, then don't. Do not give in to its stranglehold, only look forward, it is all temporary. You are not alone, it is not going to kill you. Trust me I have been where you are now, and you will be where I am shortly. I will stick around, if you need help, here I am.

[cmw128]

How aweful!!!! I haven't had it that bad, but I am so there. My ears are tingleing, everything sounds too loud. Moving my eyes alone can cause the dizzy feeling. Today is day 7 for me cymbalta free. I did it the stupid way...cold turkey off of 60mg. You are doing it the right way!!!!! Take your time, gradually wean yourself off. The brain buzzing does NOT go away once you are off completely, and I think is worse, but again...I went cold turkey. My hands and my head seem especially sensitive. This is the first day I haven't had diharria. My stomach feels great! I think because of the pro-biotic I'm taking.

I went to accupuncture yesterday...it was nice because it was quiet and relaxing. It seemed to take away the dizzy spells for a few hours too.

My ears keep poping, I am constantly tired, my eyes feel heavy and it is hard to focus.

I wonder what V.S Ramachandran's take on all of this would be. I just finnished reading his book on phantom limbs.

[ElaineB]

I can come on here today and report that things do get better over time. I have been off Cymbalta since May 31st...My symptoms are slight now and I hope to give hope to some of you out there who may be in the midst of the worst of it.

I continue to suffer fatigue, but I try to give in to it and rest, because if I fight it, it just gets worse. That's when the vertigo symptoms return. I try to limit my stress because if I am overstressed the symtoms return. But things are just SO much better than they were a month ago.

My boyfriend and I just broke up after a 2 year relationship; I think everything that I have been going through with this Cymbalta withdrawal was a contributing factor. It's hard not to be angry and bitter. Even in the midst of the sadness, though, I am handling life well without Cymbalta. I am feeling things deeply and although it is painful, I almost welcome being able to feel again. I know I will survive and be stronger as a result of all of this.

If I can be of any help to anyone out there, I will check the boards from time to time. Hang in there...it does get better.
EB

[BeverlyB]

Erin: So sorry for what you (and we all) have been through I'm on Day 9 and honestly- 3 days ago, if I didn't know better I would have thought I'd had a stroke. I had the exact same symptoms my husband (who is not yet 40!) had when he lost half of his cerebellum.

Even though I am still going through withdrawal, I truly believe it will not go on forever. I have my moments when that thought terrifies me, but it WILL get better!