UnusualRoom: Luvox withdrawal - writing with tears and desperation

December 21, 2021

Hello all.

I was directed here by another member who shared a unfortunately similar experience.

At this point, I have exhausted many, many attempts to find a psychiatrist or doctor of any kind who understands SSRI withdrawal. (Or doctor at all given the huge waits from Covid, politics, etc.) I can't even find a psychologist at this point despite literally sending out bulk emails. This has been soul-crushing for me because I need help.

I'm desperate and afraid. I have things happening to my body that scare me and make me feel like I'm going to die, or worse, that mental health will get so bad it makes me want to die. I feel like I'm going crazy and would really, really appreciate some guidance and advice because I've taken all the traditional paths and they're not getting me anywhere but frustrated.

I'll post my timeline but this is the short version: In September I started having severe symptoms from the Luvox I had been taking for a few years for OCD. (100mg, but it has wavered in dosages through the years.) It got so bad the ER told me I have seratonin syndrome, which I to this day don't know is true or not. Around this time, I was also being given hormone replacement and taken off, as well as a bad experience with THC from a CBD gummy my friend gave me and assured me I wouldn't have any reaction. I did, and my anxiety went through the roof. Basically all the side effects from my Luvox were coming out stronger and I was feeling worse, so I decided to get off of them. Because I seem to have more of a medication intolerance and side effects from literally every drug I take, my goal is to get off my meds all together, but open to new possibilities in the short-term.

My psychiatrist wanted me to do a 3-4 week taper down from 100mg which...didn't even register because I knew it wasn't going to happen. I had been properly weaned off small doses of benzos last year and did 'ok'-ish-SSRI withdrawal is definitely worse for me.

I'm down to 25 mg of Luvox as of today 12/21/2021. I've been at 25mg for about two weeks because I want to be done and Luvox has been causing me severe migraines. The pain and suffering happens when I'm on it or not, and I think I've kindled myself in the past and gotten really bad results.

But now I'm at a point where i'm miserable. I had constant fear and panic attacks, derealization, depersonalization, painful and limiting muscle tension where it feels like my muscles and nerves are being ripped, temperature fluctuations, bouts of rage and crying, akathisia/adrenaline dumps (this is the worst and makes me want to die). I mentally feel out of it, like my not myself or connected and feel like I'm constantly drugged or drunk when I'm actually getting off meds. I only got brain zaps once or twice, and my withdrawal doesn't seem completely like a lot of others, which makes me wonder if something else is wrong and scares me. It seems like mine manifests more mentally and in my muscles.

I was already struggling and then a few days ago I had trigger point injections where they mixed it with a steroid and it literally spun my life out of control. I felt almost psychotic and sat sobbing in the doctors office, going out of my mind (but still aware of what was going on, talking, etc.) It was one of the worst feelings I've ever had and my enite body was convulsing with the effect of the stimulant and fear. I think this experience, along with the steroid in my system, reset my system to a new "high alert" and the last few dayshave been unbearable and I've wanted to kill myself.

I guess I want to know what I should do. Should I grit my teeth and bear down and know this will fade? Will it fade or will I be like this forever? I really don't want to start another SSRI or another drug, or reinstate because the side effects from these meds are only slightly better than the withdrawal and I don't want to create a kindling effect.

Please help me. I don't want to die, and even more so, I don't want to lose my mind. I've considered committing myself but I really feel that would be a horrible idea given the facilities, how they treat people, and that they don't understand SSRI withdrawal and the complications. I think I would get drugs shoved down my throat and have to start over. (I went to the crisis center/healthcare here when I started, begging for help, and they dismissed me, saying SSRI withdrawal wasn't that bad and would last a week or so.) As of right now, I've been using super low doses of Xanax (0.125mg, broken up tablets) just to get through. I also occasionally take Maxalt for migraines but it sort of makes everything worse so I'm tryin to avoid it. I tried one tiny dose (8 mg) of Lyrica tonight for the akathisia and I felt like I was so drugged I could barely think straight and all my muscles were twitching//moving, which gave me more anxiety, so that's out. I have severe medication intolerance/sensitivity since being on SSRIS and dealing with extreme anxiety. I also had bypass (same as weight lost reduction but I had it for severe acid reflux) and now any medications hit me fast and hard instead of being disbursed evenly. I've made many phone calls to doctors and surgeons about this and no one is of any help.

I just need reassurance and suggestions. Please help me, and thank you. I know this tapering schedule is too fast but I was terrified, told I had serotonin syndrome and no one would help me. I didn't find any resources until later.

Timeline (to the best of my ability, there's been so much of it):

1. 100mg Luvox started in 2015.

2. Put on Xanax 1mg as needed in 2018.

3. Put on Pristiq (Began and ended within 3 weeks in 2018)

3. Put on Gabapentin in 2018

4. Put on Lyrica in 2018.

5. Between 2019-2020 I weaned off all meds. I dont recall dates but my benzo reduction took place over a course of 6 months with various other benzos used like valium. This is all a blur.

6. Psychiatrist kept changing my dosage of Luvox, where in 2020 we went up to 300mg and then down to 200, 150, and stayed at 100mg for about a year.

7. 2021, psych had me trying different levels of Luvox 125-150 around my period for PMDD. Didn't go well.

8. Had severe reaction to Luvox and/or withdrawal from going back down. Then started having a severe reaction to Luvox in general so had to wean off. The psychiatrist had me scheduled to be off in 4 weeks due to fear of Serotonin Syndrome but couldn't do that. I still went fairly fast and at different levels for a couple of weeks because I didn't know what I was doing.

9. Up and down dosages the last few weeks in September due to ignorance and lack of doctor availability, and then the rapidness due to trying to figure it out on my own despite my doctor wanting me to go faster.

10. October 3-8: 75mg (played with various doses through the day, splitting them up, etc. No guidance and I know this wasn't good).

11. October 9-18: 50mg

12. October 20-29: 37.5mg

13: October 30-Nov 1: 25mg

14. November 2-November 19: Back to 37.5mg

15. November 20-December 4: 31.25mg

16. December 4-December 21: 25mg

What do I do to make this better?

Edited December 21, 2021 by ChessieCat
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December 23, 2021

Hello, and welcome to SA. We are a volunteer-run community of people who have been or are getting off of psychiatric drugs. I'm very sorry that your doctors have put your through this. Unfortunately, the vast majority of doctors know little to nothing about how to taper people off of psychiatric drugs. It sounds to me like you have symptoms due to adverse effects of the drug, as well as withdrawal. From what you describe, it sounds as though you have made many changes in your dosage in the recent past, and this can confuse and sensitive your nervous system, and cause symptoms.

If you could copy and paste the drug history above, and take out everything but the drug names, dates, and dosages, and do this for each change in dosage, that would be very helpful. Put the details of your drugs in a concise vertical list (no symptoms or descriptions), only drug names, specific dates (as best you can say for example early March if you don't recall the day) and dosages of each medication decrease or increase. Use this format:

Drug name: date, dose, date, dose, date, dose…

Etcetera

Please read the link below for instructions. This will allow us to give you the best guidance.

How to List Drug History in Signature

Here is some 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:

How Psychiatric Drugs Remodel Your Brain

This helps you understand what withdrawal syndrome is:

Video on Recovery from Psych Drugs

What is Happening in Your Brain

Windows and Waves Pattern of Stabilization

Tapering is best done extremely slowly, and we generally taper by 10% of the current dose no more than once every 4 weeks, so that the taper becomes exponentially smaller.

Why Taper by 10% of my Dosage

Tips for Tapering Luvox

Also, as we are recovering, we suggest keeping things slow, simple, and stable.

Keep it Simple, Slow, and Stable

Considerations About Stability - Stop Jumping Around

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

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

We can give you suggestions about what to do when we know more details about your drug history. In the meantime, I don't suggest that you change your dose. I've given you a lot of information. It will help you understand what is going on, and what to do. Please be reassured that you can recover from this, but it will take plenty of time, and patience.

December 23, 2021

This amount of information is incredibly overwhelming given the circumstances I'm in, and I don't remember years worth of dates, but here goes:

Med History

Luvox (2015, 100mg)

Xanax (2018, 1mg as needed)

Pristiq (2018 for 3 weeks then ended CT)

Gabapentin (2018)

Lyrica (2018)

**Weaned off all drugs except Luvox between 2019-2020**

Luvox (2020 increased to 300mg)

Luvox (2021 decreased to various levels between 200-125; 2021 100-150 around my period for PMDD; Late September 2021: Start weaning off 100mg)

Luvox (September ?-Oct 3 Various dosages between 100 and 75 recommended by doctor)

Luvox (October 3-8: 75mg (various doses through the day for w/d.; October 9-18: 50mg; October 20-29: 37.5mg; October 30-Nov 1: 25mg)

Luvox (November 2-November 19: Back to 37.5mg; November 20-December 4: 31.25mg; December 4-December 21: 25mg)

Luvox (December 21-December 23: up-dosed to 31.25mg doing 6.25 in the morning and 25mg at night)

December 23, 2021

4 minutes ago, UnusualRoom said:

This amount of information is incredibly overwhelming given the circumstances I'm in

I understand. Take your time to go through it. I felt the same way when I first joined this forum, but eventually, when I read through a lot of it, it really helped me.

I will copy and paste your drug history to your signature box.

December 23, 2021

I summed it up the best I could. I've actually read most of this but I'm in a bad position with having already quickly tapered both A) due to bad medical advise and B ) having severe reactions to Luvox suddenly. I guess I'm looking for advice on what to do next. I up-dosed from 25mg back to 31.25mg because it's only been 2 weeks. I'm not sure if this was the right move or not. I had genetic testing done that basically showed my body does not metabolize Luvox well and because of this, puts me at risk for serotonin syndrome. But I don't want w/d either. I'm already at a point of no return and feel like I'm dying or going crazy.

December 23, 2021

I wanted to add this:

Last summer 2021 I had gastric bypass surgery for severe acid reflux. Afterward, medications were a real pain in the butt and I had a SEVERE issue with pain when taking Luvox, which is when I started weaning off the 300mg. My point in adding this is that bypass alters the way your body metabolizes medications, so I feel like this is yet another factor making this difficult because I don't know what it's doing anymore.

I have contacted *countless* surgeons and doctors about this, even pharmacists, to no avail. There is a severe lack of body metabolism after bypass and I got no help. From what I can tell, it seems like it's getting digested fast and hitting hard without it being "spread out" like it's supposed to. I do weigh less by default so I think the weight change caused the usual dosage to be "too much".

The faster I get off this drug, the better.

December 23, 2021

One last thing, as my Mom reminded me and I've been so overwhelmed: I got trigger points injections last Friday (12/17/21) and had a SEVERE reaction to what I think was the corticosteroid they mixed in. I had a severe panic episode where I felt almost psychotic, depersonalization, anxiety, and my entire body started shaking and convulsing. I also got really dizzy and couldn't see well so the nurse sat in the room and spoke with me until it passed, about 1.5 hours later. It was horrific, and I personally believe that it re-jacked my already hyper nervous system up to a more intolerable level, as things have been worse since then.

December 24, 2021

Your drug signature shows you were taking varying doses of Luvox earlier in the year. This is probably a significant source of your trouble. The nervous system really likes stability, and varying the dose tends to confuse and destabilize the nervous system. It is important to take the same exact dose each and every day at the same time of day. Not only that, but I see frequent dose changes, up and down. This, too, is pretty hard on your system. I suggest that you stick with one dose for several months, and give you system a chance to find some stability. Don't jump around on your dose! You recently changed your dose to 31.25 mg. As long as you don't feel significantly worse after you did this, please stay with this for at least a couple of months. I know you had an adverse reaction, but usually people with adverse reactions can tolerate a lower dose of the drug.

Please read the links I posted above about stability.

20 hours ago, UnusualRoom said:

My point in adding this is that bypass alters the way your body metabolizes medications, so I feel like this is yet another factor making this difficult because I don't know what it's doing anymore.

I don't know if this is true, or not, because I'm not a medical professional. However, I think the factors above are probably playing a major role in your difficulties, and if you become consistent in your drug dosing, there is a good chance that you will feel better, although that may take some weeks or months.

20 hours ago, UnusualRoom said:

The faster I get off this drug, the better.

We do not suggest a fast taper except in extreme circumstances, such as liver abnormalities, and allergies. Please see

Fast Tapers and CT's

15 hours ago, UnusualRoom said:

I got trigger points injections last Friday (12/17/21) and had a SEVERE reaction to what I think was the corticosteroid they mixed in. I had a severe panic episode where I felt almost psychotic, depersonalization, anxiety, and my entire body started shaking and convulsing.

Why are you having these? Yes, steroids can be an issue in withdrawal. If it were me, I would carefully weight the pros and cons of these injections, and choose the lesser of the 2 evils. Is it possible to stop having these injections for a while, to help your nervous system to heal? Discuss this with your mom. Please realize, that doctors are not God, and not everything they recommend is correct. Your body is yours, and you have every right to say "no" to what a medical person wants to do to you.

Please rest assured that this miserable situation is not permanent, as long as you deal with this properly, and take care of yourself. My. heart goes out to you. I'm praying for you and thinking about you.

Edited December 24, 2021 by getofflex

December 24, 2021

Hi there-thanks for the response. (For the record, I'm a self-reliant 34 female, my Mom only got brought up because I was discussing it it with her, but she doesn't make medical decisions for me. lol.)

In terms of trigger points-this was most certainly a huge doctor "mess" up. I have on my charts that they're not supposed to give me steroids. I haven't gotten trigger point injections (for pain) in years, but last time I received them, they did them without steroids just fine. This was a new person who disregarded the info, didn't tell me, included the steroid and there we have my issue. I've already cancelled my upcoming appointments because it absolutely is not worth it.

I'm going to stick with the 31.5mg for at least a few months. Is it ok to do the 6.25 in the afternoon and 25mg at night, or should I I take it all at once? I guess I'm trying to mitigate the short half-life side effects.

Additionally, I was given Xanax to help with my SSRI taper because my anxiety was so bad I was suicidal. I've been taking super low doses (I totally forgot to put this in my signature, I'll update) and I have to admit that it's the only thing that got me through some of this. However, I'm now worried about dealing with that taper afterwards. I don't take consistent dosages-literally will break off tiny pieces (0.0625-0.125) here and there through the day, usually never exceeding .25 on rare occasions. For the sake of consistency, should I start taking them scheduled, like say, 0.0625 once in the am and once in the pm? And then deal with that after the SSRI withdrawal is done? Do them simultaneously?

Any help would be great, and thank you for your kind words and thoughts .

December 24, 2021

9 minutes ago, UnusualRoom said:

I've already cancelled my upcoming appointments because it absolutely is not worth it.

Oh dear. Medical people should be more careful. I agree, I would do that if it were me.

10 minutes ago, UnusualRoom said:

I'm going to stick with the 31.5mg for at least a few months. Is it ok to do the 6.25 in the afternoon and 25mg at night, or should I I take it all at once?

I'm glad to hear this. How is your sleep? If your sleep is good, I wouldn't mess with it. If you do decide to change your dosing schedule, please do it gradually, not all at once. For example, 5.25 and 26 for a few days, 4.25 and 27 for a few days, etc.

13 minutes ago, UnusualRoom said:

Additionally, I was given Xanax to help with my SSRI taper because my anxiety was so bad I was suicidal. I've been taking super low doses (I totally forgot to put this in my signature, I'll update) and I have to admit that it's the only thing that got me through some of this. However, I'm now worried about dealing with that taper afterwards.

This is OK. Please try not to worry about a future Xanax taper. We will cross that bridge when we get to it. Let's take things one day at a time. I don't know if you should take it consistently every day. Please tag Frogie, she is the benzo expert. To tag someone, type "@" followed by the name, then select it from the list.

December 24, 2021

I'll definitely do that.

Actually my sleep has been pretty bad. I went down to 25mg and felt ok for the first week or so, then got hit with a poop-storm of symptoms. It was odd because normally my w/d shows up sooner but this seemed to have a delayed response. Lately I've been waking up between 5-7AM and feel TERRIFIED, scared, start shaking. I usually start crying out of frustration and have to take a small dose of Xanax but it's already ruined my day. I'm not sure if this is half-life related, cortisol, or something else. The "something else" scares me because I don't know what's going on.

Is it safe to do split up dosages like that? If so, I'm going to stick with this for at least a few months and then re-evaluate.

@Frogie Hi there. I was told you could maybe give some insight on my Xanax situation in this post? any help would be appreciated. (I seem to have a hypersensitive body to medication, and get the same reaction from a 0.0625mg that someone else would need 1-2mg for.) Thank you!

December 24, 2021

@UnusualRoom

I see in your signature that you took xanax in 2018? Have you been taking it since then, or did you stop at one time? The reason I ask, is a benzo (xanax) is addictive after 2 weeks. Taking it "here and there" is also not a good idea as it puts your body in a mode that it "craves" it and you end up taking it more and more and then you do become dependent on it.

If it is helping, even at that low dose, I would start taking it consistently. At the same dose/same time everyday. You can always taper off of it after everything is over with. We can always split the dosage so it stays consistent in your system. Probably twice a day and we could always go to 3 times a day. Xanax stays in your system 6-8 hours.

If it doesn't help, and you haven't taken it consistently and only a few times then I would stop it now before your body has time to become dependent on it.

Please let me know what you think and I'd be happy to help.

December 24, 2021

1 minute ago, Frogie said:

@UnusualRoom

I see in your signature that you took xanax in 2018? Have you been taking it since then, or did you stop at one time? The reason I ask, is a benzo (xanax) is addictive after 2 weeks. Taking it "here and there" is also not a good idea as it puts your body in a mode that it "craves" it and you end up taking it more and more and then you do become dependent on it.

Hi Frogie,

Thank you responding so quickly. I was on Xanax in higher dosages in 2018 and I was able to find a knowledgable doctor to help me wean off using other benzos and eventually liquid methods. I was actually off of them at the end of summer in 2020. I started taking them again because of the severe panic and anxiety I was getting from SSRI withdrawal. I don't know if I regret this because it got...pretty bad. So now I just sort of take them whenever I feel bad in small doses, but lately, I feel like I don't like the way it makes me feel. Even in small doses, I've just been feeling drugged up, tired, out-of-it, depersonalized, and I've been getting muscle twitches and some weakness. I'm sure in some part this is due to the SSRI withdrawal but it does seem worse when I take a benzo, which seems odd to me.

I feel quite scared by all of this and not knowing "what's causing what" or if I'm just going crazy. I'm afraid I'm not going to make it out of this alive because I can't identify the exact cause of anything and I'm scared in knowing what to do moving forward. I'm trying to find a psych to help me but it's pretty tapped out due to covid, or they aren't familiar/ignorant to ssri withdrawal and tapering.

Right now, I'll just take all the advice I can get. I want to be safe.

December 24, 2021

@UnusualRoom

First, you are going to make it out of this alive. You just have to take everything in stride, no matter how hard it it. As they say, slow and steady wins the race. And you have great people on here helping you, @getofflex is wonderful!

If you have tapered off of xanax in the past and it sounds like you did relatively well, and you've only taken it a very short time here and there I would stop it before it becomes a problem and you have to stay on it.

It doesn't seem to be helping you much and causing some side effects that aren't pleasant.

If you do decide to stop taking it, keep notes on how you feel after you stop. All of these medications have different side effects and xanax could very well be causing a lot of them because you recognize them after you taking it.

December 24, 2021

I appreciate the reassurance.

The only reason I would keep taking them is because I get those insane anxiety attacks throughout the day, which I assume is because of a combination of my normal and anxiety and a severely heightened state of anxiety/panic due to SSRI withdrawal.

They have helped with panic attacks, but I occasionally get the crappy, crummy benzos feeling.

So I feel kind of stuck. If I've been taking them for about 3-4 months, would it be safe to stop taking them cold turkey? Or should I start decreasing the dosage and maybe doing it once in the morning, one in the evening when the anxiety is at it's worst?

December 24, 2021

@UnusualRoom

No it wouldn't be safe to cold turkey off of them because you've been taking them too long now.

You could try to cut your dose in 1/2 and take it twice a day. That might keep the anxiety at bay and lessen the side effects.

It would probably be a good idea to keep notes and post them so we all know how you are doing.

Keep Notes on Paper

I'm sorry you are feeling stuck, but it will get better. It just takes time.

Please tag me so I know you need assistance 🙂

Edited December 24, 2021 by Frogie
added text

December 24, 2021

@Frogie Thank you, I'm going to do this. I'm sick being stuck in a brain fog all the time.

I appreciate both your and @getofflex's help. I shed a few tears having some guidance instead of feeling completely left in the dark on what to do.

December 24, 2021

1 hour ago, UnusualRoom said:

Actually my sleep has been pretty bad

In this case, I would shift my Luvox to earlier in the day. It is possible that this is activating your nervous system, and keeping you up at night. It's an SSRI, and SSRI's tend to be activating. How do you feel after you take the Luvox? Do you feel more alert, anxious, agitated, racing thoughts, etc?

It has a short half life (12-13 hours), so I would still take it twice a day. However, it looks as if you are taking a larger dose at night. If it were me, this what I would do. I would gradually shift the dose to taking more in the AM and less in the PM, until the doses are about equal.

Days 1,2,3,4 : AM 7.25 mg, PM 24 mg

Days 5,6,7,8 : AM 8.25 mg, PM 23 mg

Days 9,10,11,12: AM 9.25 mg, PM 22 mg

.... and so, on, until you are taking equal amounts in the morning and evening. See if this helps you with sleep. Getting better sleep will help with your other symptoms too. Did the doctor tell you to take a bigger dose in the evening, and if so, what was his/her reason? After you complete this process, then perhaps you could gradually move both doses to earlier in the day.

1 hour ago, UnusualRoom said:

Lately I've been waking up between 5-7AM and feel TERRIFIED, scared, start shaking.

I believe this is cortisol related. All people have a cortisol spike in the early morning, but for those of us in withdrawal, this is exaggerated, and can cause just what you are describing. I know it is scary, and miserable, but again, this will decrease and go away in time. Here is a thread about that:

Managing the Morning Cortisol Spike

Edited December 24, 2021 by getofflex

December 24, 2021

@getofflex Thanks for your response, I'm going to try doing this the way you suggested. I didn't realize they were stimulating; I actually thought they conked people out! So going to give this a try.

My doctor...totally worthless. She's the one who kept kindling my doses and then told me to get off the SSRI and it should take two weeks with no side effects. now whenever I try to broach the topic, she keeps saying SSRIs dont have withdrawal associated and I'm just anxious. It's maddening but due to Corona and such, I'm severely struggling to find a new psychiatrist. So I haven't gotten any advice on this at all.

December 24, 2021

3 hours ago, UnusualRoom said:

So I haven't gotten any advice on this at all.

This is why SA exists. Stick with us, this forum is your best bet for getting off of psych meds.

December 24, 2021

1 minute ago, getofflex said:

This is why SA exists. Stick with us, this forum is your best bet for getting off of psych meds.

Completely agree. I'm having a whirlwind of a day, full of tears, anger, etc. I'm carrying a great deal of anger towards the medical community, have for years.

I'm already in a beyond fragile state and today my boyfriend and I broke up. It literally pushed me to a state of such severe...everything, that it felt like my mind emptied out and I couldn't think. I was actually afraid my brain was stopping or I was dying-wondering how I was functioning when my brain was an empty void. I'm not sure if that's depersonalization or just extreme overwhelmness. Or both.

Is central sensitization normal with w/d? In the last couple weeks, EVERYTHING I do causes my nervous system to jack up (internal tremors, fear, blood pressure raises, thumping in head, vision issue, etc.) I will literally feel like I'm having a panic attack and dying from eating or taking a bath-basically anything that makes my body move or do anything at all.

I'm lost.

December 24, 2021

I literally just found the best threads on this-thanks again to the community.

December 24, 2021

I have moved your new topic to the existing topic about recommended doctors.

There are many existing topics on SA and SA likes to keep similar information in one place so it is easier for members to find and discuss. Please do a search to see if a topic exists before creating a new one. You can use the site search function or use an internet search engine and add site:survivingantidepressants.org to the search term.

recommended-doctors-therapists-and-clinics

You might also post your question in the relevant location topic:

check-in-topics-survivingantidepressantorg-members-near-you

December 24, 2021

1 minute ago, ChessieCat said:

I have moved your new topic to the existing topic about recommended doctors.

There are many existing topics on SA and SA likes to keep similar information in one place so it is easier for members to find and discuss. Please do a search to see if a topic exists before creating a new one. You can use the site search function or use an internet search engine and add site:survivingantidepressants.org to the search term.

recommended-doctors-therapists-and-clinics

You might also post your question in the relevant location topic:

check-in-topics-survivingantidepressantorg-members-near-you

I did and I didn't see any from Wisconsin. Was hoping to maybe get some new info that perhaps someone hadn't posted. I'll search again, though.

December 24, 2021

Hello, @UnusualRoom I have questions....

7 hours ago, UnusualRoom said:

I've been taking super low doses (I totally forgot to put this in my signature, I'll update)

Are you taking Xanax every day? How long have you taken it every day? Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

What are the main symptoms you associate with Luvox withdrawal? Why are you getting trigger point injections? We have seen people who are sensitized by withdrawal often have outsized bad reactions to steroids.

When you started Luvox in 2015, did you have any adverse effects from it? Why was Xanax prescribed in 2018? When you weaned off everything but Luvox in 2020, how did you feel?

How did you change to Pristiq, or were you taking Luvox and Pristiq together? How did you feel during the time you were taking Pristiq?

Did you ever skip doses of Luvox?

What were your ongoing adverse effects from Luvox before you started tapering it?

December 25, 2021

19 hours ago, Altostrata said:

Hello, @UnusualRoom I have questions....

Are you taking Xanax every day? How long have you taken it every day? Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

I do take Xanax everyday, but it hasn't been steady. Right now I take about 0.025mg-0.25mg a day. Trying to schedule them so I can get off when needed. I was on Xanax for about two years 2018-2019 and had a proper taper. Got off them in 2020. Was solidly off them for about 8 months and them I started having a lot of pain and would occasionally (one every 3-4 weeks) take the 0.5mg extended release xanax I had to deal with my anxiety and pain. Those ran out (only had like 5), had some mild withdrawal but got through it. Then was prescribed Xanax in September for panic (When I started tapering off SSRI) , switched to Klonopin for a month, then back to Xanax because the Klonopin wasn't working for my extreme, agoraphobic anxiety levels. I want to throw this in as well-September was awful for me.

Even on Luvox 100mg, (but had been bounced around from 150-125 for PMDD without a schedule by doctor) I was having a lot of severe, weird body symptoms that over the years I've been to the doctors for. Part of me is scared this isn't withdrawal and something worse, but I don't know anymore. In September, I was having horrific headaches, and using small bits of hydrocodone to deal with it which wasn't working (I forgot about this and will put in my bio) so my friend gave me a CBD oil chocolate bar. I tried to for my headaches and woke up in sheer terror in the middle of the night with my heart racing, absolutely terrified, and shaking/convulsing with twitching, jerking muscles and restlessness (akathisia). I also get a rocking sensation when I take it, and my dizziness and head related balance and headaches are worse lying down, which weirds me out. (BPPV ruled out, tested for IIH and such. Nothing huge. I had borderline high intracranial pressure, which most drs said wasn't a problem, but tried Diamox anyway. It helped a little to begin with because I think it dried out my ears, but overall didn't help, so I dont think by experience this is whats causing my issues.Ive also lost more weight since then). I found out what she gave me had THC and I'm hypersensitive to weed (and don't use it at all since having one horrible experience) and ended up in the ER. They gave me a type of benzo and I went home. Around the same time, my OBGYN had been trying hormone replacement on me and it wasn't going well, so they took me off that. I had been having some adverse reactions to my luvox for awhile, especially high blood pressure, head pressure, headaches and other weird stuff, but after all this, my reactions became severe to Luvox and I started to wean off of it because my body wasn't handling it anymore. I think my losing almost 100 lbs at this point also made a difference because the dosage was possibly too high, and the bypass caused me to metabolize it differently (I think faster and stronger). Surgeon and his team were no help.

So basically in September, I:

-Had a horrible reaction to THC and ended up in the ER

-Was taken off hormone replacement

-Stopped taking hydrocodone (was never given a schedule, just told to take it when I was in pain, and would usually take 1/2-18 of a 10mg tablet)

-Stopped taking Maxalt for migraines because was told I might have had Serotonin syndrome. (Have taken it since for migraine, but doesn't help much so I rarely take it. )

-Stopped taking Xanax for a few weeks then had to be put on klonopin

-Started a way too fast taper off Luvox directed by my psychiatrist

19 hours ago, Altostrata said:

What are the main symptoms you associate with Luvox withdrawal? Why are you getting trigger point injections? We have seen people who are sensitized by withdrawal often have outsized bad reactions to steroids.

-Severe anxiety, depersonalization/derealization, cognitive issues, fear/panic, feeling like I'm going crazy, brain fog, brain feels like it's "pausing" or stopping which trigger panic, body pain, muscles aches, severe muscle stiffness and tension. muscle fatigue, akathisia, muscle twitches, internal tremors, visual issues (can't focus eyes, light sensitivity, things just look weird and i can't explain it), hypersensitivity to any kind of medication/supplement, hypersensitivity to food, hypersensitive to temperature, headaches, head pressure, nerve pain, amplified pain, occasional burning feelings, restless legs, blood pressure sensitivity, blood sugar sensitivity, sleep issues, waking up at night or in morning with severe fear. (I started having some of this years ago when all this started for me and I'm wondering now if it was the Luvox the whole time, combined with possibility innate anxiety.) I'm terrified I don't even have withdrawal and I'm just going insane or dying.

-I was getting trigger point injections for muscle pain/tension/stiffness. It wasn't worth it, it just hurts worse now, and I'm not going again. I've been significantly worse since the injections and am just starting to come back around to my prior "normal" issues yesterday-ish.

19 hours ago, Altostrata said:

When you started Luvox in 2015, did you have any adverse effects from it? Why was Xanax prescribed in 2018? When you weaned off everything but Luvox in 2020, how did you feel?

-No adverse affects that I noticed. There was a couple times where I'd have weird moments where I felt like I couldn't breathe, was going to pass out, and it got severe in 2018 which triggered a plethora of doctors visits. To this day, I don't know if it was some delayed adverse affects from Luvox buildup, anxiety, or something medically wrong. I guess I still don't. I geneticist ran a genome test a month ago and Luvox came back with not favorable metabolism, I'll include a photo. Tested for pretty much everything, including POTS (at Mayo), thyroid, etc etc. No one could find anything but I started getting put on meds to deal with the fear I was feeling and it muddled everything. I started having a pretty bad reaction to Luvox after my bypass surgery and then in September it was almost unbearable-I could feel it within the hour of taking it, like I was stoned or drunk, my BP would rise, head pressure, headache, etc. It felt like I smoked a joint or took a bunch of opioids and I hadn't. I hated the brain cognitive issues. And then I started having akathisia from taking it in September with inner and outer turmoil/restlessness. So it seemed urgent to get off it but I'm paying for it.

19 hours ago, Altostrata said:

How did you change to Pristiq, or were you taking Luvox and Pristiq together? How did you feel during the time you were taking Pristiq?

-Per the doctor, stopped Luvox and took Pristiq. I don't remember the dose, but they weren't taken together. Another doctor took me off Pristiq after about 3 weeks because of the Serotonin syndrome risk.

-I didn't feel any better or worse. Felt unaffected by Pristiq. Was only on for like 3 weeks.

19 hours ago, Altostrata said:

Did you ever skip doses of Luvox?

What were your ongoing adverse effects from Luvox before you started tapering it?

-Never skipped doses during my time on Luvox.

-Ongoing adverse affects were headaches, head pressure, severe cognitive issues (head would feel muddled, full and scary, like I was stoned). Would get tinnitus in ears within an hour of taking it and pain, I think from my BP going up and being hypersensitive to it. Once I had the whole ER visit/THC scare, I started having stimulation affects from Luvox like akathisia, twitching, fear, etc.

December 25, 2021

Attached is my genetic testing I got last month. I really don't know what all this means and the geneticist is asking for another $500 to tell me. So yeah, don't have that. Not cool.

December 25, 2021

Quick edit:

1. In regards to prior Luvox symptoms, I was trying to remember anything at all because I wasn't as aware. What I do remember is starting to wake up with that panicky, scared feeling where your heart beats fast. This started about 4-5 years ago and I had always attributed it to just anxiety. Not sure if it's related, but it's definitely worse now, whatever the reason may be.

2. I seriously can't tell if I'm also having some sort of serotonin syndrome from having a hypersensitive system. If I am, I feel lost as to how to avoid withdrawal but not have serotonin syndrome either.

December 25, 2021

23 hours ago, UnusualRoom said:

Is central sensitization normal with w/d? In the last couple weeks, EVERYTHING I do causes my nervous system to jack up (internal tremors, fear, blood pressure raises, thumping in head, vision issue, etc.) I will literally feel like I'm having a panic attack and dying from eating or taking a bath-basically anything that makes my body move or do anything at all.

Yes, this is common for early withdrawal. It is because your nervous system is activated by being in WD. This will decrease in time, and eventually go away. I'm sorry you are dealing with this - I know it is very unpleasant. In the meantime, be very very gentle on yourself, and avoid unnecessary stress and activities.

December 26, 2021

I have my daily journal at my house but I had an absolutely horrible night. I’m terrified, and feeling hopeless. At this point I just want to end my life because I don’t know what’s going on and I’m scared. I’m at my parents house as I realized I needed to be in a safe place. The local crisis center refused to help me because they said “you shouldn’t be getting withdrawal from SSRIS” and then told me just to stop taking them cold-turkey. The worst place ever.

Yesterday in a fog, I accidentally took my 25mg Luvox at 10 am instead of 10pm. So, I just took my 6.25 mg at night-switched them. Truthfully, this panic and weirdness has been going on for awhile so I don’t think this played a huge part.

I felt out of it all day and finally settled down around 5 and felt a little better. Normally, between 3-7 pm is when I get the worst akathisia/muscle tension/fear/adrenaline in muscles feeling but didn’t today. I got into a couple hour long text fight with my recent ex and around 9 started feeling dizzy and disoriented, and had one huge heart palpitations that seemed to hit a nerve and i felt it everywhere in my body and got dizzy for a second. It felt like someone crashed a symbol in my chest. I have severe health anxiety from having ocd so I took several EKGs on my phone, BP, oxygen, etc. all good. The issue I was having about an hour earlier is I went through a reactive hypoglycemic episode that caused me anxiety and made my head feel weird, as low blood sugar does.

I felt very odd going to bed, like something was wrong with my body and my chest was tight, hurt and I was afraid of the palpitations. I felt very spacey and out of it and was scared I did something to prevent blow flow to my head. I fell a sleep and woke up at 1 am with my heart racing and high blood pressure. I was so dizzy it terrified me so I called an ambulance who checked me out. Normal ekg and everything. Did not go to ER but took part of a Xanax and my mom came and got me at 2 am.

The rest of the night was a nightmare. I woke up at 3 am and felt like someone had injected pure fear from a syringe into my body. My muscles tensed up, hurt, felt like they were revved up but not going anywhere. This happened almost every hour in the hour until 8am or so when it settled down and I could sleep. I also experienced something horrifying for the first time: whenever I got close to falling a sleep, I’d have this super creepy experience where as I was falling a sleep, my thoughts became super vivid snd alive, like I could hear them or they were super real and lifelike. It reminds me of when you start dreaming while you’re still awake but felt like they were happening-though I cognitively knew they weren’t. It happened everyone I got close to sleeping and now I’m terrified I’m going insane or developing schizophrenia or bipolar or something that maybe went “uncovered” by me getting off meds.

I feel so out of it today. Back on the 6.25 in the am/25pm schedule. Head feels full of pressure and like a bobble head when I walk, like I don’t know my place in space. Scared, chest feels weird, having weird heart palps like before when I talk or activate anything in that area.

Am I going crazy? Am I going to die from this? Is this withdrawal or not withdrawal and something far worse?

December 26, 2021

53 minutes ago, UnusualRoom said:

The local crisis center refused to help me because they said “you shouldn’t be getting withdrawal from SSRIS” and then told me just to stop taking them cold-turkey. The worst place ever.

This is outrageous!! I'm really sorry they said this, and refused to help. Thank God, that you are able to go to your parents. They are absolutely wrong - many people can and do get withdrawal from SSRI and psychiatric drugs.

1 hour ago, UnusualRoom said:

I have my daily journal at my house but I had an absolutely horrible night. I’m terrified, and feeling hopeless. At this point I just want to end my life because I don’t know what’s going on and I’m scared.

I know how difficult this withdrawal situation is, because I've been through it myself. It is probably the most challenging thing most of us will go through in our lives. However, this is only temporary! Suicide is permanent. Please, seek help right away. These links have numbers you can call to talk to someone.

If you still feel suicidal, please text this: - The Crisis Text Line (US only) http://www.crisistextline.org/how-it-works/ Text START to 741-741

For Those Who are Desperate or Suicidal.

Overcoming Suicidal Thoughts

55 minutes ago, UnusualRoom said:

I felt out of it all day and finally settled down around 5 and felt a little better. Normally, between 3-7 pm is when I get the worst akathisia/muscle tension/fear/adrenaline in muscles feeling but didn’t today.

This is good news - I'm glad to hear this.

55 minutes ago, UnusualRoom said:

I got into a couple hour long text fight with my recent ex and around 9 started feeling dizzy and disoriented, and had one huge heart palpitations that seemed to hit a nerve and i felt it everywhere in my body and got dizzy for a second. It felt like someone crashed a symbol in my chest.

I'm not a therapist, but if it were me, I would do whatever I could to avoid getting into fights with your ex. This tends to cause major stress (at least it would for me), and this can very much worsen your withdrawal situation. Read this thread about drama:

On Not Investing in Drama

The terrible night you had could very well have been caused by having a 2 hour fight with your ex. That sounds pretty intense. When we fight, we get lots of adrenaline in our systems, which is very activating, and can cause or worsen the symptoms your describe. These effects are magnified by being in withdrawal.

1 hour ago, UnusualRoom said:

Am I going crazy? Am I going to die from this? Is this withdrawal or not withdrawal and something far worse?

From what I can see from your posts, what you are going through is withdrawal, made worse by the steroid injections, and the stress with your ex.

I had suggested in a prior post about gradually shifting your dose. Are you taking the regular Xanax doses as suggested by Frogie? Let us see your daily journal when you can, so we can see better what is going on. Please hang in there - the worst part of this withdrawal is in the beginning. It only gets better from here.

December 26, 2021

The genetic tests are not relevant to what we do here.

On 12/25/2021 at 9:40 AM, UnusualRoom said:

Even on Luvox 100mg, (but had been bounced around from 150-125 for PMDD without a schedule by doctor) I was having a lot of severe, weird body symptoms that over the years I've been to the doctors for.

What were those symptoms? Were they worse at higher doses of Luvox?

Since you've had a lot of drug changes in the last months, it's hard to tell what's going on. Some of your symptoms may be from the way you're taking a benzo. We need you to start posting daily notes in the format requested:

On 12/24/2021 at 2:30 PM, Altostrata said:

Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right.

December 26, 2021

56 minutes ago, Altostrata said:

The genetic tests are not relevant to what we do here.

I included it because it showed how my body poorly metabolizes Luvox and thought it might be relevant to tapering or dosages. I guess ignore if not useful.

56 minutes ago, Altostrata said:

What were those symptoms? Were they worse at higher doses of Luvox?

1. About 4 years ago, started having light-headedness and episodes of fear/panic, discomfort and a lot of pain, especially in neck. Had episode in car that started my need for Xanax where I was driving and got just a super strange, scary sensation where it felt like I was "losing it" out of touch with reality, was scared I was going to faint. Immediately heart started pounding and I got scared, pulled over and an ambulance came. Ever since that night, my vision has changed and nothing has been the same, despite probably over 100 doctor visits. One neurosurgeon found moderate levels of cranial instability from neck weakness but other than that, I don't show any signs or tests for POTS, dysautonomia, EDS, etc.

2. I honestly don't remember. I know it wasn't as bad as it was now but I was also almost 100lbs heavier, didn't have the surgery and was doped up on other drugs, so maybe my body handled it better.

56 minutes ago, Altostrata said:

Since you've had a lot of drug changes in the last months, it's hard to tell what's going on. Some of your symptoms may be from the way you're taking a benzo. We need you to start posting daily notes in the format requested:

December 26, 2021

December 26, 2021

Good job UnusualRoom on the Notes already! And hang on tight, hang in there. You just had a significant break up......and I am so sorry......sheesh, life happens so inconveniently at times......

And.....a long history with Luvox. A FT(fast taper) behind you. And then the benzo's too.

So bear with us, as we get to know you. Okay?

My take on those "genetic" tests is in agreement with Alto. They just show how you metabolize the Luvox is all......nothing cryptic there. And they do use them to make choices around which medication to use. Not really what we are about. We are about tapering and WD.

I'm going to try to reformat the quote a bit, less bold, and delineate the shift into the next day, 26 December.

It's just a bit hard on the eyes at this point.(and forgive my lavender colored type if needed, I can go to black if asked)

42 minutes ago, UnusualRoom said:

Hmmm, can't do much with the NOTES right now. I'll try once more, when I SAVE my reply.

A slightly bigger and lighter font would be nice though, with the next set. And then NOTE the date after midnight too, instead of just rolling one into another.

Unable to change a copy of your notes. It looks like it's a copy from another program.

Thank you kindly.

L, P, H, and G,

mmt

Edited December 26, 2021 by manymoretodays
Can't change the note formatting, font, etc.

December 26, 2021

About 4 years ago, it appears these drugs were added to Luvox:

Quote

Luvox (2015, 100mg)

Xanax (2018, 1mg as needed)

Gabapentin (2018)

Lyrica (2018)

Were these drugs added before or after you got these symptoms:

49 minutes ago, UnusualRoom said:

started having light-headedness and episodes of fear/panic, discomfort and a lot of pain, especially in neck

Currently, you take Xanax at about 3:30 a.m. and 10:30 a.m.? That's all?

Yes, you got an adverse reaction to 25mg Luvox after you took it at about 11 a.m.

UnusualRoom: Luvox withdrawal - writing with tears and desperation

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