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. 

[SleepPls009]

Hi all!

 

Like many of you, I suffer from pretty bad sleep issues due to the effects of my withdrawal. My big problem right now is sleep length; with perfect sleep hygiene, I can get about six hours in a row, but it’s never enough, and I wake up after that. I’ve trained myself to get back to sleep, but any sleep I have after my first awakening seems to be low quality/fairly useless. On the rare occasions that I do sleep past six hours (which I cannot seem to replicate) I feel amazing. 
 

Of all the sleep aids/supplements we’ve discussed on this site, are any particularly useful for increasing sleep length/maintaining sleep/keeping you asleep? Let me know what has worked for you, and what you’d recommend!

[Onmyway]

@SleepPls009

Please do not start new threads in the Symptoms forum on topics that already exist.  Pls do a search and post in the existing topics. 

 

Thanks

[SleepPls009]

Hi All!

 

I need advice; I made a pretty severe mistake and now I’m going through acute withdrawal again. I allowed myself to be convinced to trial a low dose antidepressant called nefazodone for sleep; I was desperate enough to fix my issues that I was willing to give it a try. I took a SINGLE dose of 25 mg (half of the lowest dose they actually prescribe) and I had a bad reaction. 
 

I did not take another dose and was ok for the first few days off of it, but then symptoms started to appear. I’ve been crying on and off for days, then about three days ago near total insomnia set in. I struggle to fall asleep at all, and if I do it’s at 5am and then I sleep for like 3 hours. I also seek to have Gastro issues now, and small amounts of food will cause mood swings.

 

Im not really sure what to do. It’s been ~10 days since I took the med and things are pretty bad. I’m not sure if they’ll pass or if I should try reinstating.
 

Also, I’m not sure if I’ve now been sensitized to other meds I’m on; I take a low dose beta blocker for some of the mild cardiac symptoms I developed during my original withdrawal, and a statin to help. Last time I went through something like this it was other substances I’d been sensitized to that were keeping me awake. Should I try going off of these and seeing what I can handle? I also take melatonin but now that might be causing an issue…I’m not sure. 
 

Any advice is appreciated!

[Onmyway]

Hi @SleepPls009

this was clearly an adverse reaction and reinstating would be counterproductive. I think your only option is to wait it out - anything else can make things worse. You seem to be sensitive to medicines. Propranolol can make you slow and depressed but shouldn't make you sleepless. 

Insomnia is a part and parcel of withdrawal. It gets better. No obsessing with it (which is hard to do, I understand) is helpful. 

OMW

[SleepPls009]

Hi All, 

 

I realize that I went for quite awhile without posting an update, and that a lot has happened since I started this thread that I should probably fill everyone in on. So here is a retrospective of some important developments over the past year that should explain how I got to where I am currently, plus some questions that have emerged over the past few months. Thanks all in advance for any help/assistance you can offer! 

 

To recap, I went off of my SSRI of 20+ years, Luvox, in March of last year. After doing so, I experienced protracted withdrawal with heavy insomnia/mood swings for about 5 months, then entered a more drawn out period of less acute symptoms (depression and mood swings went away, insomnia changed to sleep initiation insomnia but remained). 

 

Fall '22 - heart problems emerge - I'd had some suspect mild chest pains for years (part of the reason I was exploring going off of luvox, since a doctor suggested that luvox might contribute), but these became much more pronounced after the "switch" from my acute withdrawal to the longer withdrawal period. I took ambien one night and had a massive heart palpitation, then spent the week after feeling intermittent, mild pains in my chest. After going for a run about a week later, I experienced shooting pains throughout my chest and arm, and experienced on/off squeezing pain in my chest for the rest of the day. I went to the ER, where the cardiac workup they performed came back normal. This led to a period of extensive testing which culminated in my first heart cath in Nov '22, which led to a diagnosis of coronary microvascular dysfunction. I was told that the small vessels supplying my heart with blood weren't dilating properly, leading to chest pain, and that I needed to be on a beta blocker. 

 

I spent the first half of '22 trying a variety of beta blockers, all which caused challenging side effects at low doses (most exacerbated my insomnia). Eventually I settled on a calcium channel blocker, amlodipine. Still not making much progress on the cardic front, I went to Cleveland Clinic to get a second opinion, and the doctor there expressed skepticism about my initial diagnosis, and requested a second heart cath. I did the cath, and he found no microvascular dysfunction the second time around. Still experiencing chest pains, we proceeded to run a cardiac MRI, which, oddly enough, showed something that looked similar to focal microvascular dysfunction, but still the doctor was skeptical. He is still reviewing the results, but I'm increasingly wondering if my chest pains might actually be the result of autonomic issues caused by my antidepressant usage, rather than a genuine issue originating in the heart. The key element here is that I can perform most normal functions just fine, as long as I don't experience any physical stress. Small amounts of physical stress seem to bring on chest pains, and I'm unable to run for this reason (running yields squeezing chest pains afterwards). Working at a computer seems to bring on similar issues, as I get very easily agitated when navigating digital UIs. I'm wondering if this is some sort of adrenergic dysfunction caused by my nervous system distress, especially since it now appears that taking Ambien may have played a role in causing the issues. 

 

Fall '23 - Nefazodone error - I'd posted about this above, but I did make a pretty big error earlier this month by testing out the medicine nefazodone for sleep. After a year and a half of pretty bad sleep issues, I felt like I'd hit a wall, and sought out advice from a renown sleep psychiatrist at Cleveland Clinic. I explained my issues and we ran a sleep study, and he said that based on the results my chief goal should be to defragment my sleep. He suggested a low dose of nefazodone for this purpose. In my past experiments with antidepressants post-luvox, when I had adverse reactions, they typically only entailed losing a night or two of sleep, or so I thought. I tried half the lowest dose and still it was too much for me, and I experienced renewed withdrawal symptoms (including increased food hypersensitivities, sleep issues, mood swings, muscle twitches, etc.) after. I'm still in that period, but things seem to be evening out a bit (at least temporarily). Unfortunately, I think I was a little desperate to believe that there was an easy fix to my sleep issues, and that perhaps there was another explanation for my problems other than protracted antidepressant withdrawal. Safe to say I won't be making that mistake again...just hoping that this period of nefazodone fallout passes sooner rather than later! 

 

That’s all for now. Thank you all again for your continued help and support!

 

 

 

 

[SleepPls009]

Hi All

 

Are there any success stories for people who developed multiple chemical sensitivity syndrome (I.e. widespread intolerance to household chemicals, fabrics, foods, etc) after withdrawal or after an adverse reaction? 
 

I unfortunately experienced an adverse med reaction that rapidly sensitized me to a wide variety of chemicals, though I’d had smaller versions of these sensitivities building over the years (I think my psych med issues and withdrawal might also stem from prior sensitization). I’m not sure if anyone experienced anything similar and recovered, but would love to hear it if so! Looking for encouragement and hope!

[getofflex]

2 hours ago, SleepPls009 said:

Are there any success stories for people who developed multiple chemical sensitivity syndrome (I.e. widespread intolerance to household chemicals, fabrics, foods, etc) after withdrawal or after an adverse reaction? 

Please use the site search feature for questions like these.  This link will teach you how to do that.  Thank you. 

 

https://www.survivingantidepressants.org/forums/topic/25981-how-to-do-a-site-search-on-surviving-antidepressants/#comment-561534

 

[Chompoo]

@SleepPls009 I went through the same thing at one point. Delayed onset of sleep. Senstivity to everything - soaps, food, all medication etc. Your body is overloaded with toxins and your immune system has kicked in by over reacting to everything.

My suggestions to you:
- Take psyllium husk twice a day, every day. Once when you wake up (no food after that for 1.5 hours), and once before you go to sleep (no food before that for 1.5 hours). This will absorb toxins in your body.
- Take foods that will aid you in detoxification - high sulfur food (chicken breast, broccoli, cabbage and other cruciferous vegetables) and high silica food (cucumber, green beans)
- Work on your liver health. Take 2-3 spoonsful of Extra Virgin Olive Oil (it must be extra virgin or it will be useless; please make sure you are buying the real thing as there are many fakes out there), lean meat (including red meat such as beef), fatty fish (e.g. salmon), cruciferous vegetables and blueberries.
- Avoid inflammatory foods like deep fried food, trans fat oil, sugar (including fruits), carbohdyrates (all grains, including whole grain ones), bread, diary (including cheese), vinegar (many bottled sauces contain this), alcohol, and all fermented stuff made with yeast (including most Asian sauces like soy sauce and oyster sauce). Keep to a meat, fish and vegetables diet.
- Avoid all vitamins and supplements. Get whatever you need from food. And avoid large doses of herbs to season your food. Sea salt, white pepper, ginger powder, sesame oil, a small amount of Italian herbs are ok.

The improvements will not be immediate and will take at least 4-5 months. Good luck!

[LotusRising]

On 1/14/2024 at 3:58 AM, SleepPls009 said:

Are there any success stories for people who developed multiple chemical sensitivity syndrome (I.e. widespread intolerance to household chemicals, fabrics, foods, etc) after withdrawal or after an adverse reaction? 

 

Per your PM, it looks as though your post was moved here to your personal thread, due to an already related pre-existing topic. 

 

[manymoretodays]

Hey there.

And gosh you are still waiting for a review over a year later.......

On 10/25/2023 at 4:12 PM, SleepPls009 said:

I went to Cleveland Clinic to get a second opinion, and the doctor there expressed skepticism about my initial diagnosis, and requested a second heart cath. I did the cath, and he found no microvascular dysfunction the second time around. Still experiencing chest pains, we proceeded to run a cardiac MRI, which, oddly enough, showed something that looked similar to focal microvascular dysfunction, but still the doctor was skeptical. He is still reviewing the results,

That's frustrating.  You haven't heard from the second doctor, or called in to see what his further review revealed?  I'd sure want to know, if it's continued to cause fear and limit your activities.  And I don't know if it's related to withdrawal.  Are you still having chest pains?  I'd sure want to follow through with this.

 

And then seems the MCS/hypersensitivity to everything  came on after the Nefazodone, alias Serzone?  Is that accurate?

 

Helpful to have you update your medication trials in your signature- please do so, as I had to read back a bit to figure out adverse reaction, and to what.

AccountSettings/signature  Hit Save at the bottom when it is updated.

 

Gosh, sounds awful.  I like Chompoos non-drug coping and just some dietary things to try.  Easy does it.

 

Are you carrying on okay and functioning?   Anyone you can talk to that helps you break the chains of worry?  I sure hope so. 

 

Unfortunately, sometimes time and simple measures are the best one can do.   And stay away from further pharmaceuticals.  I think you'll heal.  And never had the exact same experiences you are having.  I'm glad Chompoo could relate.

 

May this all be a distant memory soon!

L, P, H, and G,

mmt