JoeG: Lyrica / pregabalin withdrawal

[JoeG]

I am 70 y.o. But have had severe Restless Legs Syndrome since I was in my 20’s. I’d been on dopamine agonists all my life and switched from one to the next as each seemed to fail. In 2011 my wife arranged for me to be seen at John’s Hopkins by the lead researcher and he found that I had augmentation with each of my old drugs,  that is, I would get better initially and then the drug would actually make me worse until I was on huge doses and then I would switch to the next one.  The alternative to this class of drugs are the long acting slow release opiates like methadone,suboxone, and fentanyl.  I became depressed and then had my first panic attack on methadone ( after a few years) and on suboxone I vacillated between sleep apnea on higher doses and panic attacks on lower doses.  I tried several other drugs such as Mg, gabapentin, talwin, morphine, etc before starting fentanyl at 12.5 mcg every 48 hours and eventually settling in at 50 mcg every 48 hours.  My RLS is under good control and according to the research, RLS patients don’t ever become addicted and almost never require higher doses over time.  But, I was started on Lyrica at the same time as the fentanyl patches because I worried that there were no more medicines to try and I thought I would have to commit suicide.  When I am not on a drug or it isn’t working, I have to walk constantly until 4:30-5 a.m. and then I get maybe an hours sleep before it starts again.  The Lyrica made me terrifically dizzy and nauseous and lethargic.  I asked to stop after 3-4 months and because the common wisdom was a one to two week taper, I did that with disastrous results.  Finally I tapered off at very low doses over months and have been off now for 10 months.  At first it was day after week after month with perhaps 2-3 hours of normalcy in a week’s time.  Now I have longer windows of a few hours to several days with waves that are similar...a few hours sometimes but I just finished yesterday a wave of 6 days.  
My waves begin with fear on awakening followed by excessive sneezing then loose stools and dry heaves.  I feel “sick” and exhausted and sleep almost continuously until it passes.  When it is over it occurs suddenly like someone flipped a light switch and I know for certain that it has gone.  Still, even in my windows, I start each day with dread.  If it is unremitting,I take either 2.5 mg or 5 mg of Valium, but I always try to avoid that.  
That is my story.

[Gridley]

Welcome to SA, Joe G.  It's a very encouraging sign of healing that your windows are longer.  Congratulations on being 10 months off Lyrica.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.  A list format is best.  You'll need to use a computer rather than a phone.

 

Account Settings – Create or Edit a signature.

 

Here is some information about withdrawal and the healing process.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

The Windows and Waves Pattern of Stabilization

 

When we take psychiatric medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

It's very good you're being very cautious with the valium.

 

This is your Introduction topic, where you can complete your drug signature, questions and connect with other members.  We're glad you found your way here.