SleepPls009: Luvox withdrawal, insomnia and heart problems

[SleepPls009]

SleepPls009 - Luvox Withdrawal, Insomnia, and Heart Problems (Oh my!)

 

Hi All,

 

It’s great to meet you! Though I wish it were under better circumstances. I’m looking for advice around Luvox reinstatement and doctors who deal with withdrawal; more information is at the bottom of the post. I thank you in advance for your help! 

 

I am seven months off of Luvox after having taken it for roughly 20 years. After years of experiencing persistent fatigue, muscle twitches, and some increasing insomnia, I decided to go off Luvox in March to see if that helped my symptoms. Go figure, it made everything ten times worse! 

 

I was on 200mg daily in winter ‘21, went down to 100mg without incident at the end of the year. Then in March ‘22 I began tapering little by little until I hit zero on April 12 (note: I was aware that stopping cold turkey was a bad idea, but I was unfamiliar with the concept of protracted withdrawal). Little by little I kept waking up earlier and earlier until I could barely sleep, and depression symptoms kicked in hard. My PCP started me on Prozac in mid-May to treat what she thought was underlying, emergent depression, and after a week I reacted so badly to it that I went to the hospital (couldn’t sleep for days, got a fever, upset stomach, shaking uncontrollably). 

 

I proceeded to try a number of different meds with my psychiatrist, but every antidepressant would either keep me awake for days, and every sleep med would lose effectiveness fairly quickly. I eventually got the idea that I might still be withdrawing from Luvox, so we decided to do a med washout to see what would happen. I survived on melatonin at the time, which was abnormally effective at low doses, and kept putting off going back on Luvox, somewhat out of stubbornness, since I felt it would be a “waste” to go back on after all that effort if I could make it to the other end of withdrawal. 

 

Eventually (about mid-late August), my brain flipped a switch, and the deep depression spontaneously went away. At the same time, my insomnia problem switched from staying asleep to falling asleep (kind of like what I occasionally had before stopping Luvox but much worse). That’s when medicine reactions became weird. 

 

I’d taken ambien before a number of times (roughly 10, 11 in total?) before August. I tended to avoid it because it made the depression a lot worse. I tried it again when the depression went away, and started having strange heart palpitations. One day after I took ambien, I went to the hospital for chest squeezing, but they found nothing. Thinking I was being paranoid, I tried it again a few weeks later and started to have what felt like a full-on heart attack. After working with a cardiologist for a number of months, it seems that ambien was causing vasospasm, or prinzmetal’s angina. A few other meds started causing this, too: Lunesta (I let a doctor convince me it was chemically different enough from ambien - dumb mistake), Quviviq (totally different mechanism than ambien, so confusing), and even melatonin causes odd heart palpitations now. The vasospasm itself seems to cause some sort of injury, because running (which I could do with ease before) brought on an episode, and after episodes I am weak and have chest pain for weeks.

 

I am now at the point where I’m trying to decide what to do next. If my nervous system is still changing, I’m worried that it could further affect my heart or other systems if I let it continue to go unchecked. 

 

So this is what I’m wondering:  

 

• Bottom line: I would love advice on whether I should reinstate Luvox. While I know this is a doctor’s realm, my current psychiatrist doesn’t understand (or acknowledge) protracted withdrawal. I will either need to take evidence and a concrete plan to him, or find a doctor who better understands these issues. 

As for the arguments for/against reinstating,  I am now sleeping better, though not well (I still go about two nights without sleep a week and average 5-6 on a good night). But the crazy/dangerous reactions to meds give me pause. On one hand, I don’t want to cause more problems, and I’m almost worried that taking Luvox now would trigger another vasospasm. But if my nervous system is still rearranging itself I’m also worried that, left alone, it’s bizarre reactions to things could get worse! I would also like to get rid of the visual snow if at all possible. 

• I’d also love recommendations for doctors who deal with or specialize in this sort of withdrawal and nervous system disregulation. I know they are few and far between, but I’m willing to travel pretty much anywhere at this point to get the help I need. 

 

 

Thank you all for your help, and I look forward to hearing back from you!

 

Edited November 18, 2022 by ChessieCat
added topic title

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  It sounds to me like you are experiencing withdrawal from Luvox, as well as adverse reactions to that, and the other drugs you have taken.  

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses, and jumping on more drugs: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

Now to your main question: should you reinstate Luvox?  Based on the fact that you have been off for 7 months, and your nervous system shows signs that it is stabilizing, (you report better sleep), and have had bad reactions to many of your drugs, I would not suggest a reinstatement.  If it were me, I would stop trying other drugs to fix the problem.  We see this quite a lot here - people trying psychiatric drugs to fix their withdrawal symptoms.  This almost always results in worse problems, rather than helping, because as we keep using different drugs, our nervous systems tend to become more and more sensitized, and then we run the risk of kindling.  

 

Hypersensitivity and Kindling

 

Please be aware that if you go to a doctor for advice they are quite likely to prescribe you more drugs.  Unfortunately, our healthcare system is set up and mostly run by the pharmaceutical companies, who profit from selling these drugs.  Is your goal to get off of the drugs?  That is the purpose of this site, to help people get off of psychiatric drugs. 

[Najla]

I noticed that the site has become empty and no one is responding to our stories. I suffer now, five months after the complete cessation of 0 amitriptyline, with a continuous decrease in pressure + pain in the heart and fluttering throughout my body. Have you experienced that?

[SleepPls009]

On 11/27/2022 at 10:20 AM, Najla said:

I noticed that the site has become empty and no one is responding to our stories. I suffer now, five months after the complete cessation of 0 amitriptyline, with a continuous decrease in pressure + pain in the heart and fluttering throughout my body. Have you experienced that?

 

Hi Najla. I haven't experienced anything of that sort. I think my own heart problems existed before I went off of the antidepressants, and my experience with insomnia just brought them out more. Have you had any other symptoms? I imagine that you have already, but I would definitely speak to a cardiologist if I were you. Mine was finally able to sort out my issue after about 3 months of me constantly hounding him!!

[SleepPls009]

On 11/25/2022 at 10:19 AM, getofflex said:

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  It sounds to me like you are experiencing withdrawal from Luvox, as well as adverse reactions to that, and the other drugs you have taken.  

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses, and jumping on more drugs: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

Now to your main question: should you reinstate Luvox?  Based on the fact that you have been off for 7 months, and your nervous system shows signs that it is stabilizing, (you report better sleep), and have had bad reactions to many of your drugs, I would not suggest a reinstatement.  If it were me, I would stop trying other drugs to fix the problem.  We see this quite a lot here - people trying psychiatric drugs to fix their withdrawal symptoms.  This almost always results in worse problems, rather than helping, because as we keep using different drugs, our nervous systems tend to become more and more sensitized, and then we run the risk of kindling.  

 

Hypersensitivity and Kindling

 

Please be aware that if you go to a doctor for advice they are quite likely to prescribe you more drugs.  Unfortunately, our healthcare system is set up and mostly run by the pharmaceutical companies, who profit from selling these drugs.  Is your goal to get off of the drugs?  That is the purpose of this site, to help people get off of psychiatric drugs. 

 

Thank you so much!! I really appreciate the advice. Did you ever manage to find a doctor who could help guide you through withdrawal by the way? Or were they all unfamiliar with the process itself? My goal is certainly to be rid of anything my body and mind don't clearly need to function. 

[getofflex]

No i tapered off with the help of this site.  The tapering advice of my doctors was wrong.  It was way too fast.  

[Najla]

2 hours ago, SleepPls009 said:

 

مرحبا نجلاء. لم أختبر أي شيء من هذا القبيل. أعتقد أن مشاكل قلبي كانت موجودة قبل أن أتوقف عن تناول مضادات الاكتئاب ، وتجربتي مع الأرق أخرجتهم أكثر. هل عانيت من أي أعراض أخرى؟ أتخيل أنك قمت بذلك بالفعل ، لكنني بالتأكيد سأتحدث إلى طبيب قلب إذا كنت مكانك. تمكنت أخيرًا من حل مشكلتي بعد حوالي 3 أشهر من مطاردته باستمرار !!

Hello, I did not have heart problems except in the last period, and during withdrawal, there is a palpitation associated with the days of the menstrual cycle and the days of ovulation. The doctor did the necessary work, did x-rays for reassurance, and ultrasound imaging, and everything was fine, and I did not suffer from severe hypotension, but two weeks ago I contracted Corona and went to the emergency In order to reduce the constant pressure that I still suffer from, and they asked me to go to the endocrinologist, today is my appointment with him. I hope to find an answer for him, and I hope that there will be no more treatments.

[SleepPls009]

On 11/28/2022 at 4:31 PM, Najla said:

Hello, I did not have heart problems except in the last period, and during withdrawal, there is a palpitation associated with the days of the menstrual cycle and the days of ovulation. The doctor did the necessary work, did x-rays for reassurance, and ultrasound imaging, and everything was fine, and I did not suffer from severe hypotension, but two weeks ago I contracted Corona and went to the emergency In order to reduce the constant pressure that I still suffer from, and they asked me to go to the endocrinologist, today is my appointment with him. I hope to find an answer for him, and I hope that there will be no more treatments.

Sorry for the delayed follow up. I hope that the appointment with the endocrinologist went well! If you are still having heart palpitations afterwards, and your cardiologist hasn't suggested this yet, you can always ask for a ~2 week heart monitor. I wore one a few months ago to track heart episodes. It was a surprisingly easy process.