Chris1970: 19 years on Luvox, now in trouble

[Chris1970]

Hello all,

 

I am Chris and want you to tell you my story and maybe get some advice or views on what has happened. I am on Fluvoxamine 50mg since 2000 because of anxiety, being stable until a generic brand change caused problems in end 2018. 

Switched back to old brand beginning of 2019 but that made me feel sick for 3 months. Pdoc made me reduce my dose to 37.5mg which gave me severe akathesia and severe numbness in my brain after 2 weeks of feeling almost no withdrawal. Reinstalled immediately to 50 mg again which relieved my symptoms the same day. However after the brand-switching and downdosing  Fluvoxamine never worked the same anymore during 2019.

I ran into real problems at the end of 2019 when some stressfull life-events happened. I became tensed, confused, precise movements with my hands didn't go well anymore, my mood went down, felt poisoned sometimes. This resulted in a crisis at the end of 2019 where I was extremely tensed, anxious, had twitchings in my face, had pins and needles in my arms and hands and had strong suicidal thoughts which I never had before.

 

My GP said to raise my Fluvoxamine to 75mg but when I took a higher morning dose, after a few hours my body was on fire. I had difficulty walking and felt like electricity was running through my veins. I was shocked by the impact of raising my morning dose from 25mg to 50mg (I took 25mg morning - 25mg evening then for 19 years).

 

From then it went downhill. I was taken to a mental crisis facility where the Pdocs raised my Fluvoxamine to 100mg and put me on 3mg Ativan per day. They were pushing me very much and did not want to hear my experience with raising Luvox, nor my refusal to take Ativan. I had to comply.

I could not take the horrible side effects of raising Luvox, so I got stuck on 75mg. At 100mg I was extremely sick, was on fire again, could not see clear and looked and acted as if I was on cocaïne or speed, according to my girlfriend. All I could do was lay on the couch for weeks and suffer.

So I am now on 75mg Fluvoxamine and the 3mg Ativan has been changed over time to 30mg Tranxene (a Valium-like benzo). Mainly because I got interdose withdrawals from Ativan.

I have been very sick during 2020 and 2021 and my pdoc tried Seroquel and Olanzapine on me, to no avail. I could not tolerate them (adverse reactions?). We changed the Ativan to Valium, then to Klonopin ( severe adverse reaction) and Tranxene.

We concentrated on the benzo's because my Pdoc believes its a good long-term medicine. But now I've reached tolerance and have to come off them.

As I have tried to taper the Valium before from 15 to 9mg in 6 months it failed because of extreme sickness and depression. But maybe the Luvox played a role in it. Since the taper-attempt benzo's are not working well for me anymore.

 

So now he wants me to go to a detox-centre which will take me from the Tranxene in 2 weeks.

The role of Fluvoxamine has almost never been adressed by him, although I asked about it several times. I know Luvox has a strong interaction with Valium. But Tranxene has the same (and only) metabolite (desmethyldiazepam). They inhabit the same liver enzym so half-life of desmethyldiazepam is significantly increased. 

 

My main question is: I have the feeling that Fluvoxamine (Luvox) is not only not working anymore, but is also doing me harm. And in a major way. My Pdoc thinks it is still "doing something" and keeps me on it. The focus lies on the benzo now, but what could be the role of Luvox?

 

Thanks and strength to everyone on this board, Chris.

 

Edited October 26, 2021 by ChessieCat
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[Kiasofia]

Welcome @Chris1970

I'm so sorry for the trouble you are having and the unhelpful drug experimenting you have been put through.

 

So we get a clear overview: please edit your drug signature following these instructions: https://www.survivingantidepressants.org/topic/24613-how-to-summarize-your-drug-history-in-your-signature/

 

Add when you took Seroquel and Olanzapine and how much. Also add any supplements you take.

 

Do I understand correctly that the only drugs you are taking now are 75mg Fluvoxamine and 30mg Tranxene? And this has been the case since April 22nd?

 

I would strongly advise against a detox-centre. Tapering needs to happen by carefully listening to the body and monitoring withdrawal symptoms. Not a two week standard one-size-fits-all. Doctors are also eager to taper benzos first, even though this might not be wise. Please read these links.

 

Why taper by 10% of my dosage?

Taking multiple psych drugs? Which drug to taper first?

 

I’m glad you found us, we’re here to support you!

[Chris1970]

Yes only taking 75mg Fluvoxamine and 30mg Tranxene. I think I had tachyphylaxis with the Fluvoxamine, can that cause adverse effects or does it just stop working and you don't notice much of it, except you get your old symptoms back?

 

I believe the long term benzodiazepine use is causing strong depression with me. I noticed this clearly when I tried to cut down my Valium dosis a year ago. A few weeks after cutting my dose from 15 to 12mg I started to get strong bouts of depression, which I never had before. They were withdrawal symptoms that never left me, despite updosing and switching to other benzo's. 

 

This is why we decided to stop the benzo first. As I was unable to do a slow withdrawal because of tolerance (never stabilized, only got sicker the lower I came) we now try a medical assisted detox.

 

I don't know the role Fluvoxamine plays in this case. I do know that if I change my dose even slightly, I get awful effects.

 

Thanks and strength to everyone on this board, Chris.

[Kiasofia]

Your valium taper a year ago was probably too fast and you are probably on a higher fluvoxamine dose than you can tolerate. Your fluvoxamine dose should have been lowered back down to 50mg not raised further up to 100mg. Unfortunately we see all too often that medical professionals raise peoples' doses, when they should lower them instead. Your valium taper was not slow by our standards. You probably got sicker at the lower doses, due to withdrawal caused by too fast a taper.

 

As I wrote, we recommend tapering maximum 10% of current dose maximum every 4 weeks. Some have to go much slower. When we updose after too fast of a taper, that doesn't always work. As you experienced.

Why taper by 10% of my dosage?

Why taper? Importance of gradual change in plasma concentration

Tips for tapering off Luvox (fluvoxamine)

Unfortunately medical professionals have a poor understanding of how this drugs effect people

and how to safely get people off them. I found this post helpful to understand what is going on and why healing takes time. This shows why a standard detox center can do harm:

How Psychiatric Drugs Remodel Your Brain

 

Coming off these drugs can cause many different withdrawal symptoms, often leading to doctors thinking the original condition is returning or that another mental illness has emerged.

What is withdrawal syndrome?

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

Coming off an antidepressant can cause anxiety and insomnia. It is therefore usually advised to not taper benzos first.

Taking multiple psych drugs? Which drug to taper first?

 

It is hard to determine exactly which drug is causing you the most problems, but increasing and lowering doses can trigger side effects and/or cause withdrawal symptoms. 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.  

 

The Windows and Waves Pattern of Stabilization

 

Ideally fluvoxamine should be slowly tapered to a lower dose or completely off. And then slowly taper tranxene. Regardless of which drug you taper first, though, please do so slowly. And never skip doses (take every other day, or different doses different days) to taper.

 

Please add the following to your signature:

The date fluvoxamine was raised from 75mg to 100mg

The date fluvoxamine was lowered from 100mg to 75mg

When you started and quit Seroquel and dose

When you started and quit Olanzapine and dose

 

Take some time to read the information I have provided and then we can take it from there. I understand the wish to trust medical professionals and taper under medical care, but unless they understand how and why to do a truly slow taper, it can be harmful.

[Chris1970]

Hi @Kiasofia, thsnk you for responding to my post. I also have the idea that 75mg of Fluvoxamine is too much for me. The 'forced' updose first to 75mg and one week later to 100mg was absolutely unbearable, I was on fire for weeks and could not see properly and felt like I had taken a cocaïne overdose. I had to go back to 75mg which was also very hard to bear. I was bedridden for weeks while updosing to 100mg and downdosing to 75mg again. I am absolutely unable to even updose even the slightest amount, which gives me an indication that 75mg Fluvoxamine is probably too much for me. (I get very agitating effects when updosing.)

 

I also believe that during my taper of Valium the agitating effects of the 75mg Fluvoxamine were not dampened anymore, making me sicker.

 

The Tranxene cessation in the detox center will be hard to stop. My pdoc has cut me off Tranxene and I have to go in at tuesday. I am very afraid.

 

But maybe I can do something about lowering the Fluvoxamine back to 50mg.

 

The updosing of Fluvoxamine took place in 2 weeks in February-March 2020. I was on 100mg for 2 weeks, and on 75 since then.

 

The Olanzapine and Seroquel I only took for about 1-2 weeks each I believe, in very low doses. I had an adverse reaction on both.

 

I will update my signature asap.

 

Thanks again and greetings, Chris.

[Chris1970]

So its been a while since I posted, but I have been to detox and was taken off 30mg Tranxene (22.5mg Valium) in 10 days. My last benzo I took on 6 December 2021.

 

I'm almost 6 months into withdrawals, which have been horrible to say the least. Now my P-doc wants to add Mirtazepine to my Luvox to ease the withdrawals. 

 

I am very hesitant about this as I am still in the dark about the role of Fluvoxamine in my benzo-withdrawals. I still believe Fluvoxamine pooped-out on me, causing problems in 2019, and because of that I had a terrible reaction to updosing from 50mg to 100mg and had to settle at 75mg where I still am more than 2 years on. I feel no relief from it, its not working and maybe even causing me harm.

 

My most debilitating symptom is extreme anxiety, especially in the morning and  lasting to deep in the afternoon. Only in the evening sometimes I find relief. 

 

What could be the role of the 75mg of Luvox in this? My P-doc doesn't question it, and believes I'm fine on it, despite the poopout and very difficult updose. I have never really stabilized in almost 3 years now, and becoming desperate.

 

Thanks, Chris.

[Onmyway]

Dear @Chris1970, 

I am so sorry you have been put through so much suffering by your pdocs and are going through withdrawal symptoms now. 

To understand the role of fluvoxamine can you please give us daily notes where you tell us how your symptoms are during the day. They would look something like this: 

 

7 am woke up, anxious after 5 hrs of sleep

7:30 took ativan - feeling slightly better 

8 am exercise - ramp up of symptoms 

8:30 am breakfast

9 am calm and peaceful, work 

......

 

9 pm sleep 

 

Have a look at this thread - it has steps on managing the morning cortisol spike which in withdrawal makes us agitated in the morning: 

early-morning-waking-managing-the-morning-cortisol-spike

 

Hope you start feeling better. Please keep posting daily notes for a few days and we can make a decision on what to do with the fluvoxamine. Even though we don't generally recommending tapering while you are symptomatic (from the benzos), if the fluvoxamine is causing some of your issues we may advise you to start tapering it cautiously and see what that does. 

 

Regarding the mirtazapine, seems like you are sensitive to psychiatric drugs (also olanzapine effects etc.) and so it may not be a good idea. 

OMW

Edited June 2, 2022 by Onmyway

[Chris1970]

2 juni

03.50 wake-up headache, anxiety, nausea
05.00 wake-up same
07.00 wake-up same
08.30 25mg Fluvoxamine 10mg Propranolol
10.00 headache less, nausea, anxiety, get up
10.30 breakfast nausea high anxiety
11.00 reading nausea high anxiety
12 00 vacuüm cleaning nausea anxiety headache worse
12.30 visiting a friend felt better
14.30 driving car paralyzed feeling in head
15.00 seeing other friend anxiety nausea doom
17.30 driving car doom anxiety
18.30 dinner at home doom
19.30 television adrenalin surges doom airhunger
23.30 50mg Fluvoxamine 10mg Propranolol feeling better go to bed.

 

Edited June 2, 2022 by ChessieCat
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[Onmyway]

Hi @Chris1970, 

thanks for the notes. Keep doing them for a few more days. Would it be possible for you to take the propranolol at a different time than the fluvoxamine? We want to see how each of them impact you. 

OMW

[Chris1970]

Hi OMW, thanks for your message. I can separate Propranolol and Fluvoxamine and see how it goes. Maybe put 1 hour in between?

[Onmyway]

18 minutes ago, Chris1970 said:

Hi OMW, thanks for your message. I can separate Propranolol and Fluvoxamine and see how it goes. Maybe put 1 hour in between?

I'd put a few hours in between to be able to tell what is doing well. Especially the morning one (if you don't want to to mess with the evening dose so as not to disturb sleep).

[Chris1970]

3 juni
03.30 wake up, ruminating thoughts, anxiety, palpitations no more sleep 
08.30 anxiety,  doom, depression 25mg Fluvoxamine 10mg Propranolol
09.00 shower, high anxiety, destructive thoughts
09.30 breakfast high anxiety
10.00  walk outside 35  min difficult because of anxiety
11.00 sit in garden anxiety doom headache
12.00 supermarket lightheaded nausea anxiety
13.00 lunch eating fish anxiety less
14.00 home panicky feeling
15.00 resting falling asleep anxious palpatations upon waking
16.00 garden anxious
17.00 bbq with family visitors depression anxiety
19.00 anxiety depression lessen
20.00 television feel better
24.00 bed feel better 50mg Fluvoxamine 10mg Propranolol

 

Edited June 4, 2022 by ChessieCat
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[Onmyway]

Hi @Chris1970

have you implemented any of the tips for managing the morning cortisol? The change in symptoms over the day indicates that this is the worst issue. You also list anxiety as a symptom throughout the day - can you rate it - i.e. is it 2/10 at 3 and 8/10 at 9am? Also, when you say depression, do you mean sadness? Can you specify it better - depression can mean lots of things. Is your anxiety about specific things or is it just a feeling of restlessness/worry? 

 

Many of our members find Claire Weekes' methods life changing for dealing with anxiety. You can find some of her videos on youtube. 

https://www.smh.com.au/lifestyle/health-and-wellness/face-accept-float-let-time-pass-claire-weekes-anxiety-cure-holds-true-decades-on-20190917-p52s2w.html

Edited June 4, 2022 by Onmyway

[Chris1970]

3 juni
03.30 wake up, ruminating thoughts, anxiety, palpitations no more sleep 
08.30 anxiety,  doom, depression 25mg Fluvoxamine 10mg Propranolol
09.00 shower, high anxiety, destructive thoughts
09.30 breakfast high anxiety
10.00  walk outside 35  min difficult because of anxiety
11.00 sit in garden anxiety doom headache
12.00 supermarket lightheaded nausea anxiety
13.00 lunch eating fish anxiety less
14.00 home panicky feeling
15.00 resting falling asleep anxious palpatations upon waking
16.00 garden anxious
17.00 bbq with family visitors depression anxiety
19.00 anxiety depression lessen
20.00 television feel better
24.00 bed feel better 50mg Fluvoxamine 10mg Propranolol

 

Edited June 5, 2022 by ChessieCat
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[Chris1970]

Hi OMW, my anxiety can be very high, it even hurts in my head and I cannot think anymore. Its crippling and very acute. If I have to rate it it is about 7-8/10 during the day and lets up in the evening to about 3-4/10. When I wake up at 3 am it can be 2-3 or so.

 

My anxiety feels chemical and can be provoked by catastrophic thinking, which I do a lot. Mainly about my mental health and what would happen if I cannot bear the suffering anymore. I get doom-feelings about that and that grim outlook makes me very depressed about my future. I think about my daughter, my wife, my parents and friends and think what would happen to them if I can't take anymore. Those thoughts scare me a lot and trigger my anxiety. Depression comes with that as well. But the myriad of symptoms that I have is possibility from underlying depression as well, but also from benzodiazepines withdrawals.

 

The anxiety seems out of proportion to the situation I'm in when it happens. Some thinking can provoke waves of very high anxiety. It can also vary by the day.

 

I haven't read up about the cortisol yet. I can see it plays a big role in my symptoms. Will look into it now thank you. 

[Chris1970]

4 juni
4.30 awake no more sleep - anxious, doom, ruminating thoughts, intrusive thoughts
8.30 Fluvoxamine 25mg
09.00 making breakfast for daughter -  depressed anxious
10.00 breakfast - high anxiety, doom, nausea
10.30 10mg Propranolol high anxiety
11.00 outside watching hockeygame talking to other parents - feel better
12.00 supermarket - anticipary anxiety
13.00 lunch home anticipary anxiety doom
14.00 home television - anticipary anxiety
15.00 walking in nature bird watching - anxiety does not let up
17.00 back home - anxiety, strong doom feelings
18.00 driving with a friend - anticipary anxiety, later improving
20.00 at home dinner - air hunger, too much adrenalin
21.00 watching tv - too much adrenalin
24.00 fluvoxamine 25mg propanolol 10mg  go to bed

 

Edited June 5, 2022 by ChessieCat
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[ChessieCat]

Hi Chris,

 

Just a tip about posting text which you copy and paste from elsewhere.  When you paste the text it is larger than the default and can be difficult to read (depending on the device being used).

 

Next time you paste the text, please highlight all the text and change the font size to 14.  Thank you.

[Chris1970]

Hi ChessieCat, I'm sorry and will post in font size 14 from now on.

 

I have read up about the cortisol and have started up the use of Magnesium Citrate. I bought a bottle of 400mg pills, it says to take 2x a day. As I have tried Magnesium before and it revved me up I was very cautious and the first day 06-05 took about 100mg in the morning. It made me sleepy and less anxious. Later that morning I took another 100mg and I was less sleepy but my anxiety was still under control. Later that afternoon and before bed I took the other 100mg doses. That did not go well. I had high anxiety in the night at 04.00 possibly because of too much Magnesium. The next day I was very anxious as well, more than is normal for me these days.

 

From there on I'm taking little bits of about 50mg in the morning and before bedtime. I don't know what it is doing now, maybe nothing. My anxiety is still here and maybe a bit worse. I did go on a walk yesterday and for the first time in months was able to enjoy the sunlight and the smell of flowers although I had anxiety. Should I continue to take it? Thank you!

[Chris1970]

9 juni
04.30 wake up, ruminating thoughts
05.30 anxiety starts
07.30 get up, tea, feeling amped up, 25mg Fluvoxamine, 10mg Propranolol
08.30 amped up, fight or flight
10.30 breakfast 2 sandwich + Milk
11.30 anxiety, overthinking, amped up, palpitations, airhunger
12.00 walking outside, dizzy, anxiety
13.00 rest at home dizzy, headpressure, tinnitus worse
14.00 driving to city - head calmer
15.00 visiting city - walking difficult, brain fog
17.30 diner - tensions in body, trying to relax
18.00 visiting friends - feeling better
24.00 sleep 25mg Fluvoxamine 10mg Propranolol

[Chris1970]

10 juni

05.20 wake up - feeling too much energy inside me, revved up
09.00 revved up, nerve pains, anxiety,  25mg Fluvoxamine 10mg Propranolol
10.00 revved up, nerve pains, depressed
11.00 shower - nerve pains, anxiety
12.00 nerve pains, anxiety in waves
13.00 supermarket- feel better
14.00 lunch - feel worse after, fatigue
15.00 anxiety, nerve pains, fatigue
16.00 same, fast breathing
17.30 travel in car to see parents - inner tensions
19.00 dinner with parents - inner tensions
21.00 feeling better
24.00 go to bed 50mg Fluvoxamine 10mg Propranolol

[Chris1970]

11 juni
00.00 sleep Fluvoxamine 50mg Propranolol 10mg
05.30 wake up - extreme anxiety with sharp pain in brain
06.30 extreme anxiety, pain in brain
08.00 tea and small breakfast - extreme anxiety
10.00 anxiety still strong 25mg Fluvoxamine 10mg Propranolol
12.00 lunch - intense anxiety in head
14.00 anxiety lessens a bit, brainfog
15.00 anxiety less
16.00 driving car - feel better
18.00 dinner - better
19.00 evening tv - somewhat depressed, doom
20.00 feeling better
24.00 sleep 50mg Fluvoxamine 10mg Propranolol

[Chris1970]

Am I doing something wrong with the daily notes? I don't understand. 

[ChessieCat]

The staff are all unpaid, unrostered volunteers.  They are peers who have tapered or are currently tapering.

 

@Onmyway Are you available to review Chris's notes please?  Thanks.

[Onmyway]

Hi @Chris1970, 

seems like your main issue is the increase in cortisol in the morning. Can you have a look at this link and apply some of the tips - blackout curtains really helped me, for example. 

https://www.survivingantidepressants.org/topic/17471-early-morning-waking-managing-the-morning-cortisol-spike/#comment-41

 

Also, can you try to take your drug at the same time every morning - there is wide variation in your time as seen in the daily notes. Also, why do you take it in the morning rather than at lunch time and divided in 1/3 and 2/3rds? 

 

Also, you had mentioned earlier that your thoughts increased your anxiety. Have you tried CBT tools? "The Feelings Good" book is a great resource for CBT. It might help to distract yourself in the morning - i.e. watch a comedy show, do something with your hands or something that requires focus so you are not left ruminating with your thoughts. 

 

Pls apply these and see what might help. 

OMW

 

PS. Are you taking any supplements/vitamins?

[Shep]

@Chris1970There's a "moderate" drug interaction with your two drugs. 

 

Drug Interactions Report - propranolol  & fluvoxamine

 

Quote

 

Moderatepropranolol  and fluvoxamine

Applies to: propranolol, fluvoxamine

Using propranolol together with fluvoxaMINE may increase the effects of propranolol. Contact your doctor if you experience uneven heartbeats, shortness of breath, bluish-colored fingernails, dizziness, weakness, fainting, or seizure (convulsions). If your doctor does prescribe these medications together, you may need a dose adjustment or special test to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

 

As @Onmyway noted, you do need to be consistent with your dosing.

 

You may want to separate these drugs out by two hours. This will lessen any drug interaction you may be getting. 

 

Please pick the times of day you wish to take them, separated by two hours, and then try to be as consistent as possible. 

 

Please let us know how you're doing. 

[Chris1970]

Hello OMW, ChessieCat and Shep, thanks for your replies! I have looked at the cortisol and am now sleeping with a sleeping-mask which is helping me sleep a bit better and longer. I have also tried Magnesium-citrate but it seems to rev me up. I am more anxious using it. I tried 400mg split in 4 portions of 100mg over the day. This was too much. 2 x 100mg was still too much I found. I don't dare taking Magnesium again, maybe 2 x 50mg?  

 

I can split my doses of Fluvoxamine and Propranolol and put 1-2 hours in between. I take my doses when I go to bed and get up. So that's not always the same time. I can take my morning dose at lunch to have them more evenly spaced. 

 

I am wondering if you have any thoughts about the Fluvoxamine hurting me after the adverse events following the dose-increase of 2020? I was on fire raising it, and the p-docs kept pushing me to hold on. I'm still on that raised dose.

 

Thanks again! Chris.

[Shep]

10 hours ago, Chris1970 said:

I don't dare taking Magnesium again, maybe 2 x 50mg?  

 

You may try taking 50 mg and crushing it up into powder and putting it in water to sip on throughout the day. Epsom salt baths are another way of getting magnesium, although with your sensitivities, you may want to start with only 1/4 a cup to see how you do. You can always increase.

 

10 hours ago, Chris1970 said:

I am wondering if you have any thoughts about the Fluvoxamine hurting me after the adverse events following the dose-increase of 2020? I was on fire raising it, and the p-docs kept pushing me to hold on. I'm still on that raised dose.

 

I'm looking at your signature: 

 

Quote

 

Fluvoxamine 50mg 2000-february 2020

Fluvoxamine 100mg (2weeks) february 2020-march 2020  

Fluvoxamine 75mg march 2020-present

 

 

It looks like you're currently on a lower dose than you were previously in March 2020, but higher than the 50 mg from February 2020. Are you still on 75 mg Fluvoxamine? 

 

Please list the time(s) of day you take your drugs and the dose. Please also list how you feel 30 minutes after taking each of your drugs. This will help tell if your symptoms are being caused by the Fluvoxamine or if they may be from earlier withdrawals.