Alana: Difficulty getting of Cymbalta, extended withdrawal symptoms

[Alana]

Hello, just over a year ago my psychiatrist lowered my Cymbalta dose from 60mg to 40mg. 2 days later, I was in severe withdrawals. She put me up to 50mg, but I didn't stabilize. Besides the physical symptoms (eye pain, dizziness, muscle pain and joint pain all over my body, and many more), I had the worst fear of my life. It was like everything around me looked like a nightmare. I also had insomnia and a high heart rate. I began having suicidal thoughts. In the hospital, they raised me back to my original dose of 60 mg and said I would stabilize in about a month's time...but that didn't happen.

 

I switched psychiatrists, and the new one wanted to increase my dose to 90mg; she thought that was the only way I could get past this. At first I felt better...for maybe 10 days or so. Then the anxiety went through the roof. I couldn't sleep, when I finally could fall asleep late into the night, myoclonic jerks kept waking me up. I had muscle spasms/twitching/shuddering all through the day, too, all over my body. My heart rate was dangerously high. I was hospitalized again. They put me on Seroquel for sleep, and Neurontin to bring down the anxiety symptoms.

 

It took me 3 months to come down off the Cymbalta, 1 mg per day, by opening the capsules and counting the beads. When I got down to about 10mg or so, I started getting brain zaps, very strong ones that would sometimes go through my whole body and out my fingers & toes. Most of the brain zaps branched forward into my cheeks. I had a lot of pain behind my ears, behind my jawbone. My depression and anxiety got bad. I had crying spells and deep sadness. The insomnia and myoclonic jerks got worse. The longer I was off the Cymbalta, the worse I was getting. About a month off, I was hospitalized once more. They increased my Seroquel and Neurontin, and put me on Lexapro.

 

2-3 weeks after starting Lexapro, I started getting tinnitus. First, some pings in one ear when I woke up one day. Then I developed loud hissing/ringing in both ears, and ear pain and pressure. About 6 weeks later, a low, rumbly hum in one ear like a truck idling in the distance. Then about 6 weeks later, beeping tones in a morse code pattern in both ears. About 10 days later, this became louder, and I got several high pitched tones in my left ear. The "morse code" tones happened in response to white noise. As time went on, I began to hear this even when there was no white noise in the background. It turned into a kind of jangly, metallic morse code, worse in my right ear. Then about a month later, I got a high-pitched feedback typed sound in my left ear, like when you get a microphone too close to its stand. Through this all, I've had intermittent ear pain, and times of pressure in there. Sometimes I get popping open of my ear, and it hurts. If I press on my ear from the outside there is burning pain deep inside. I have been seen by 2 doctors at our family practice, an urgent care doctor, an ENT, and an allergist. 4 of them said "Eustachian tube dysfunction due to allergies", but the allergist tested me and all allergy tests came back negative. I've never had my ears in this state before, though.

 

I am now 6 months off Cymbalta. I don't know if the evolving tinnitus is due to extended Cymbalta withdrawal or due to the Lexapro. I am not sure if I should try coming off the Lexapro...will be talking to my doctor about this, but I'm nervous as I don't really know what direction to go in...all choices come with risk.

 

I still get myoclonic jerks, but much less. I still get some muscle twitching during the day, but less. I am on the Seroquel and Neurontin for sleep and for the anxiety symptoms.

Edited July 21, 2016 by scallywag
tags added

[Alana]

I am in extended Cymbalta withdrawals. My nervous system has been so cranked up for the last year. I know it could be a long time before my nervous system settles down.

 

I was prescribed Lexapro not long after getting off of Cymbalta. I am wondering if the delicate state of my nervous system could affect how the Lexapro is received...in other words, could I be having side effects from Lexapro I wouldn't otherwise be having?

 

I was on Celexa for 11 years with no side effects at all. I came off of it twice, with no withdrawal symptoms. I was prescribed Lexapro now because of its similarity to Celexa; they thought it would be a good choice for me.

 

But, I have been experiencing evolving, worsening tinnitus since starting the Lexapro. I just wonder if the sensitivity of my nervous system is causing the Lexapro to do this. Does this ever happen?

[Meimeiquest]

The short answer is yes

[SquirrellyGirl]

Alana, since you said you you came off Cymbalta twice with no withdrawal symptoms.  However, you went back on each time.  How long were you off each time you came off of Cymbalta, and what was your method of coming off - how fast?

 

Each time you come off and then go back on, your nervous system is thrown around trying to remodel in response to life with the drug and life without the drug.  Each stop/start sensitizes the nervous system for the future.  Many people come off a drug too fast, suffer withdrawal and then start a new drug, and have paradoxical reactions or severe side effects, probably in part because there is still WD going on from the first drug that the new one can't cover, and in part because the dose of the new drug is too high for the condition of the nervous system, so side effects are severe.

 

People become sensitized to all kinds of things when they are in withdrawal or have stopped/started/changed dosages/changed drugs.  Caffeine, sugar, gluten, milk, supplements, other drugs can all become intolerable.

 

SG

[Fresh]

Hi Alana , welcome to the site.

 

This is a wonderful resource for information on all the drugs involved.

You can read different viewpoints then make informed decisions. It sounds like you have a good

understanding of some of the issues involved with going on and off these drugs.

 

Please put ALL the drugs you take into the interaction checker at www.drugs.com and post any significant

interactions here.

 

If you click FOLLOW at the top right , you'll receive an email each time someone posts here.

 

Best wishes , Fresh

[Alana]

Symptoms: Intermittent ear pain and pressure, tinnitus that evolves (new sound adds on every 5-7 weeks), sometimes popping of ears, burning pain in ears, "cr-crunch" sound in left ear after hearing sharp sounds, and I can feel the muscle move once. (Suspect this is the tensor tympani muscle.) (Normal ear exams at doctor and ENT appointments.)

 

These began 2 months after getting off Cymbalta, but this was also 2-3 weeks after beginning Lexapro.

 

Also had much worse allergy symptoms over the winter (affecting eyes, nose, larynx, increasing asthma...), facial flushing after eating dinner or later in day, nose running every time I eat anything (even if it's bland), even if I swallow cold water.

 

To confuse things even more, I just saw an allergist and they did the allergy blood test, and the whole panel came back negative.

 

My biggest issue is the tinnitus. If it could be the Lexapro that's causing it I don't want to continue on it. I just don't know if there's any way to make a good decision as to whether it's Cymbalta withdrawals or the Lexapro.

 

It started with 2 pings in my right ear one morning. Then I got loud hissing in both ears. Then I got a low rumbling sound in my right ear, like a truck idling. Then I got morse code beeping tones in both ears, which reacted to white noise. (White noise made the morse code tones happen.) Then I got several high tones in my left ear, and kind of metallic jangly sounds in each ear that come and go. Most recently, a high pitched feedback sound in my left ear, like when you get a microphone too close to its stand.

 

Could the Cymbalta withdrawals cause this adding on of sounds every so often? Or could the Lexapro cause that? Any insight into this would be greatly appreciated!

[ChessieCat]

Hi Alana,

 

I suffer from tinnitus too and it varies in intensity.  I've just done a bit of searching around SA and found this (which I agree with):

 

Post # 37 within the Tinnitus - What does all that noise mean? topic  Please see the quote of moodyblues' post.

[Fresh]

Please see the thread on tinnitus that Chessiecat suggested http://survivingantidepressants.org/index.php?/topic/1736-tinnitus-what-does-all-that-noise-mean/?view=findpost&p=113593&hl=%2Bhead+%2Bnoises

You might also look at the thread "Head Noise and other symptoms in the Head" here http://survivingantidepressants.org/index.php?/topic/1388-head-noise-and-other-symptoms-in-the-head/?view=findpost&p=124254&hl=%2Bhead+%2Bnoises

 

Please follow this topic so you see responses.

[Alana]

No, I was only on Cymbalta once. That's what I've been in withdrawals from.

 

I was on Celexa twice. (I had a break from it while I was pregnant, and went back on afterwards. Later, I went off it went I went to Zoloft. So both times coming off Celexa I had no problem.)

 

 

Alana, since you said you you came off Cymbalta twice with no withdrawal symptoms.  However, you went back on each time.  How long were you off each time you came off of Cymbalta, and what was your method of coming off - how fast?

 

Each time you come off and then go back on, your nervous system is thrown around trying to remodel in response to life with the drug and life without the drug.  Each stop/start sensitizes the nervous system for the future.  Many people come off a drug too fast, suffer withdrawal and then start a new drug, and have paradoxical reactions or severe side effects, probably in part because there is still WD going on from the first drug that the new one can't cover, and in part because the dose of the new drug is too high for the condition of the nervous system, so side effects are severe.

 

People become sensitized to all kinds of things when they are in withdrawal or have stopped/started/changed dosages/changed drugs.  Caffeine, sugar, gluten, milk, supplements, other drugs can all become intolerable.

 

SG

[SquirrellyGirl]

My error, meant Celexa.

 

SG

[Alana]

The Celexa, I went off that in 2002 when I got pregnant. Got back on in 2003. Stayed on until 2011 until I was switched to Zoloft. Was on Zoloft for about 1.5 years, it didn't help my depression after a while. Then was switched to Cymbalta. Never had issues with withdrawal symptoms until Cymbalta. That one knocked the wind out of me.

 

Anyway, my psychiatrist said I could lower my dose of Lexapro to see if that changes the tinnitus at all.

 

I am still uncertain as to whether the tinnitus was brought on by the Cymbalta withdrawal, or by going on Lexapro (or both of these things...) I know no one can say for sure.

 

I was told in the hospital that it could take 2-3 years for my nervous system to settle back down from the Cymbalta withdrawal. I've been off for 6 months. I've begun to see some improvements, but my nervous system is still jacked up. I'm supposed to be having as little stress as possible, but the tinnitus has been keeping me very anxious, especially since it has kept increasing (in the number of sounds I have).

[SquirrellyGirl]

I am suspecting that your system has been getting sensitized from the ons and offs over the years since 2202.  Though you said you had no withdrawal, when people end up going back on the antidepressant within a year of coming off, it is most often due to protracted withdrawal that isn't recognized as such, deemed a "relapse" by doctor and patient.  Many people don't experience up front withdrawal, and only after many months do the symptoms well up in force.  That happened to me.  I went for six or so months before I had anxiety, depression and insomnia like never before in my life.  Didn't put two and two together since it was so long after coming off.

 

At any rate, I'm surprised that you got some acknowledgement from the hospital that you could experience protracted withdrawal from Cymbalta.  As Fresh mentioned, the Symptoms & Self Care forum has lots of threads that discuss tinnitus and head sounds.  I think doing some emotional work such as meditation/mindfulness, self-help CBT and the like are worth looking into to help with and prevent the secondary fear/anxiety that are coming up around the tinnitus/head noises.  Our fretting gives them more power to cause disruption.  Again, lots of tips on such techniques in the Symptoms & Self Care forum.  I would think that EFT tapping would be a good technique to try for those sensations.

 

http://survivingantidepressants.org/index.php?/topic/841-eft-emotional-freedom-techniques/

 

EFT can be used for anything, physical or emotional

 

SG

[Alana]

Thank you for the suggestions. I am already doing some of those, but I should try the other things as well.

 

Yes, I think many doctors don't understand that protracted withdrawal happens. In fact the psychiatrist I had when first coming off Cymbalta did not understand that. She didn't even think that my severe withdrawal symptoms were due to withdrawal at all! -- Until she did some research and then said, "Oh...Cymbalta withdrawal really does exist." I stopped going to that psychiatrist; she wanted me to come completely off Cymbalta in 1 month's time, even though I was already in bad shape from her lowering me 60mg to 40mg! I switched doctors but the new one raised my dose too high (90mg) and I had an overdose/intolerance with more terrible symptoms. Then I came down 1mg per day over 3 months.

 

In the hospital (psych unit) they knew about withdrawals. I had a doctor tell me that yes, as I had read, it could be 2-3 years for restabilization, but that it would go in waves back and forth. First big waves and over time, smaller and smaller ones.

[Alana]

Hello again, are there any instances of people reporting hearing their eyeballs move while in withdrawals? I found mentions of this on some qQ&A sites online, that this bizarre thing can occur in w/ds. I have tinnitus which has been changing over time (new sounds joining in), and just recently I realized I can hear my left eye move if I move it up to the left and then back down again. I also have had inflammation issues in w/d...what seems like allergies (or non-allergic inflammation) in my respiratory organs.

[mammaP]

Hi Alana, yes I heard my eyeballs move in withdrawal, it is a common withdrawal symptom! I heard a whooshing sound that really freaked me out   I found magnesium and fish oil helped that and brain zaps. 

 

It is another part of the healing process and will pass as yet another symptom takes it's place. How are the other symptoms now, and did you change your drugs or doses since you were last here? I hope things are improving for you. 

[Alana]

I heard my eyes move in acute withdrawals, but I am now 8 months off, and a new sound has come up. It isn't like when I had brain zaps. When I had brain zaps I could hear a swoosh.

This is a different sound, sort of a muted, low sound. Not sure why this is showing up now. Not sure if it's related to withdrawals. I only hear it on the left side.

(I am still having many withdrawal symptoms, by the way.)

[Alana]

Another question - Can antidepressant withdrawal cause respiratory hypersensitivity? After getting off Cymbalta, I was hit with really sensitive airways, like my allergies got much worse. Any inhaled particles really bother me. It's like the tissue in my airways has a super sensitive reaction to anything I breathe in, be it dust, cat dander, outdoor allergens, even just being outside on a windy day (at the end of winter, before there was any pollen or anything.) I have had a severe reaction to Cymbalta withdrawal and high anxiety (manifesting in many physical symptoms.) Could this be due to the withdrawal as well?

[SquirrellyGirl]

I would say so, yes.  Many experience flu-like symptoms and allergies. Some of these meds block the histamine receptors, would have to check on whether Cymbalta is one of them.  For the drugs that do, people get horrible histamine reactions, itching, dry eye, reactions to histamine in foods, and the like.  I know I have been sensitive to particles in the air and get tickles in my throat that cause coughing fits.  I have had such extreme reactions when exercising out in dry grasses, where I begin to cough and hack to the point of vomiting! Always a dry scratch feeling, to where people notice that I cough a lot.  I never put it together with being on Effexor or dropping the dosage (which I did, not purposely trying to come off the med but just wanting to reduce the dose, usually by too-large amounts).  I had terribly chronic dry eye for quite some time, but it has ceased now!

 

SG

[Alana]

Thank you!

[Alana]

Could being on Lexapro cause tinnitus that keeps worsening over time (new sounds keep appearing)? I have not been able to find any information anywhere about this.

[SquirrellyGirl]

Here's a link regarding tinnitus:  http://survivingantidepressants.org/index.php?/topic/1736-tinnitus-what-does-all-that-noise-mean/

 

SG

[apace41]

Alana,

 

At the risk of grossly oversimplifying, if you have been checked out by primary care and are generally otherwise in good health, it is safe to assume that any of the crazy, impossible to explain symptoms that you get (noisy eyeball, varying forms of sound in the ears, etc., etc.) are all a function of the dysautonomia brought on by SSRI withdrawal.  Of course, if you have any new symptom or any symptom that seems life threatening, nobody would tell you not to get it checked out, but these boards are littered with people who had test after test only to confirm there was nothing wrong from a physiologic standpoint.  The nervous system runs throughout the body with sensors from head to toe.  When it is thrown into complete disarray by the removal of an artificial aid to its operation, one that caused its architecture to be remodeled, it is axiomatic that you will have strange symptoms from disparate body parts.

 

It is incredibly disconcerting but, with time, patience and self-care, it will get better.  You will not always believe it and the mental aspect of this is at least as difficult as the physical, but if you stick to it and let this play out, over some period of time (and nobody can tell you how long) you will heal.

 

Best,

 

Andy