7 replies to this topic

[jes52]

To Fishinghat and other long term suffers of Cymbalta,

I’ve read thousands of these entries for the past ten months.  I have not read any story quite like mine.  I used Cymbalta for 10 years.  I started Cymbalta in January of 2007.   December 21, 2016 was the last time I took it.  I have been off Cymbalta for 10 months now and have experienced the usual withdrawal symptoms.  I am the most physically fit right now than I have been in several years.  However since June 2017 I have suffered from unbearable anxiety.  Two weeks ago I started to take Hydroxyzine.  That has allowed me to sleep a little better.  Here is my story:

Cymbalta made me bed ridden anywhere from 4 to 10 days a month for 10 years.  I experienced the following symptoms: nausea, exhausting fatigue, headache, dizziness, extreme constipation (over 7 days), stomach ache, and general malaise or flu-like symptoms.  
 
The symptoms would happen just like clockwork. It started with a headache.  My ears would hurt and I would get a runny nose.  I would get the urge to have a bowel movement (which is strange because of my constipation).  All sounds were unbearable.  I would drop things, get the shakes and lose my coordination.  I couldn't function on the most basic level.  I would become nauseated, dizzy, and experience stomach pains like cramping.  I would lose my appetite.  I would become extremely fatigued and sleep all day.  I would remain in bed for 4 or 5 days at a time only to get up to use the restroom.

I've had a battery of blood test over the years: blood counts, liver enzymes, immunologies, metabolic panels, antibodies, Complements, ferritin, B12, hepatitus...   Procedures such as Gastric endoscopy, Helicobacter pylori biopsy, Polysomnography, Brain MRI, Brain and Neck MRA, and Sinus CT scans.  I had only one positive test result.  The Polysomnography (sleep test) showed limb movements observed during REM sleep.  One’s body should be paralyzed during REM sleep.
My wife has since noticed the movement and twitching during sleep have all but subsided since discontinuance of Cymbalta.

My family doctor was very cooperative in helping me to find out why I was sick all the time.  In one of my visits he asked if my antidepressant was working.  I told him I wasn’t sure.  In May 2016 he increased my Cymbalta dosage from 60mg to 90mg.  My symptoms became more frequent and more severe.  Inadvertantly my doctor led me to a discovery.  I never suspected prescription drug use was causing these problems.  As I had more and more tests with negative results, my doctor suggested I see a psychiatrist to see if Cymbalta was still needed or if I needed a different anti-depressant.

I decided to slowly lower my Cymbalta 10mg a week before I saw the psychiatrist .  After about 6 weeks I saw my new psychiatrist.  He started me on Trintella (Brintella) at 5 mg.  At the time I was also taking 40 mg of Cymbalta.  Eventually I lowered to 20 mg of Cymbalta and 10 mg Trintella.  The idea was to discontinue Cymbalta and increase Trintella to 20 mg.  I was taking Trintella on a trial basis.  I went to get a prescription for Trintella but found out my insurance would not cover it.  So..... I decided to completely get off of Cymbala 5mg at a time.  

 As I was lowering my dosage I noticed I was feeling better.  I became more regular and had a movement every day or every other day.  I had less headaches and felt more energy.   I could get up from a lying or seated position without getting dizzy.  I stopped urinating 4 and 5 times at night.  My urine flow was considerably more vigorous.  My nauseousness disappeared.  I discontinued most of my prescription and OTC drugs.

A  nuerologist and sleep specialist who had been working with me for several months over my symptoms helped me conclude that it was Cymbalta causing my symptoms.  She diagnosed me with Serotonin Syndrome.  She said my brain had probably received toxic doses of Cymbalta.  I didn’t know you could have Serotonin Syndrome for 10 years!

Ok, here’s the deal.  This Friday I am to see a psychiatric nurse practioner recommended by my family physician.  I want to be rid of this anxiety and get help for mild depression.  I am terrified of taking anything that affects serotonin.  I am not opposed to therapy or medication but what are my options?
 

[fishinghat]

Welcome Jes
 
Interesting story. I am so glad you shared it with us as it can serve as a reminder that the warnings of Serotonin Syndrome are real and can be very dangerous.. It sounds like you have a good dr but I am a little disappointed he/she didn't figure this out sooner given that many people have this type of reaction to Cymbalta, especially at higher doses.
 
You are very justified in your concern in taking anything that regulates serotonin. As you had this reaction at a reasonable dose of Cymbalta (60 mg I assume) it is reasonable that you would have a similar reaction to other ssri and snri compounds.
 
Believe it or not you are on one of the best antianxiety drugs right now and that is hydroxyzine. Its max dose is 100 mg 4 times per day. I would suggest you talk to your dr about going using it every 6 hours in order to help control the anxiety.. It does not regulate serotonin. It regulates histamine instead. It is non-addictive and no withdrawal. I would also consider using clonidine, which is highly recommended for anxiety. Usually given at up to 0.1 mg twice a day. It regulates adrenaline. It also is not addictive and had no withdrawal. I take both meds and my dr prescribes so that I have enough for an occasional prn use if I am having a bad day. They have worked wonders for me. Both are good in helping with Cymbalta withdrawal as well.
 
Another thing to consider is Wellbutrin which is an antidepressant but it regulates dopamine and can be very effective for depression and moderately effective for anxiety. (dopamine is converted by the body into adrenaline so it does help somewhat fror anxiety).
 
I would not recommend a benzo like Ativan, valium, Xanax. etc as they are very addictive, poop out fast for most, and have a tough withdrawal.
 
Therapy is a must. I was blessed with a dr who was adept at cognitive behavioral therapy (mindfulness therapy is also good). She taught me how to fo breathing exercises, reduce heart rate, refocus my thinking from obsessive thoughts, and many more coping mechanism. It has proved very beneficial.
 
Well, I have given you a lot to think about so let me know if you have any questions. I will be glad to help as much as I can.

[jes52]

I feel my anxiety coming on like a rush.  I can feel it in my chest and throat.  It tastes like a chemical.  I must be feeling the effects of adrenaline.  Clonidine sounds good.  I read it might not be an option for individuals who have heart issues.  I have hypertension and take metoprolol (12.5mg) and amlodipine (2.5mg).  Two years ago I  had a stent placed in my left anterior descending artery.  However I’ve never felt any chest pain before or after the procedure and it does not limit my activities.  

I have been doing Kundalini Yoga since the 1st of October.  The breathing techniques and meditation have been very helpful.  I am so calm after the exercises.  I wish it would last more than a few hours.  Unfortunately I can’t exercise 24 hours a day.

I will keep you posted on my Friday visit.
 
Fishinghat, I can’t believe you have answered thousands of questions on this site.  You have impacted a lot of lives!

[fishinghat]

Jes, clonidine would be a replacement for metoprolol (Which I think is a beta=blocker). It should be a good fit.

I remember how so many others helped me on this site when I had my withdrawal. I figured the least I could do is pass it on to others.

[jes52]

Do you take Hydroxyzine and Clonidine concurrently every day and are they taken multiple times i.e. 3 x's each /day?

[fishinghat]

Yes, I take 25 mg of hydroxyzine at 8AM and 3PM and 50 mg at 8PM. I also take 0,o05 mg of Clonidine at 8AM, 2PM and 8 PM.

[jes52]

I saw the psychiatric nurse today.  We are going to do a diagnostic test (CYPA450) to try to determine what antidepressant will work best.  This will tell me how my body metabolizes a drug.  She is thinking about putting me on Mirtazipine for the following reasons: help with sleep, work on anxiety and help with the mild/mod depression.  The side effects are possible weight gain, drowsiness during the day and strange dreams.  One good thing, apparently Mirtazipine is an antagonist for what causes serotonin syndrome.  We will await the test results before I try Mirtazipine.   

In the short term she wants me to take 100mg of gabapentin for sleep only.  She wasn’t to hip on the clonidine but she was going to talk to my primary care physician and cardiologist about it.  

This is the first therapist I seen in over 10 years.  All of my antidepressants (AD) were prescribed by primary care physicians.  I can’t believe I let this happen to me.  My AD’s were just not managed during that time.  I should have been seeing a mental health professional periodically.
I just took my AD’s like drinking a glass of water.  I never thought about it.  Never again!

[fishinghat]

Hey Jes, glad to see things are progressing for you. Many of the drs are beginning to progress away from the CYP450 test in favor of genetic testing. It tells which genes you have for handling stress and from that they can determine which antidepressant to use. The problem is that most insurances don't cover it and it runs around $1200 for a complete gene sequencing. Good luck with the test and I hope it helps.

 

By the way most drs here have steered away from the Gabapentin several years ago when it was linked to an increase risk of pancreatic cancer. This risk is mentioned in the full drug insert for gabapentin.  Just thought I should mention it.