Warriormaden: Front row seat to tenacity and pure will in here

[Warriormaden]

Hello, I really didn’t  want to post a long intro because I’ve been battling either anxiety or med side effects or med w/d side effects for a long long time and I’m tired, sad, and angry and don’t have the energy, but I wanted to be able to reply to another member on here, so here goes.   I’m not anti med and they did help for a very short period when I first took them but overall my life has been one of struggle even with them or partly because of them. Idk.

 

I got OCD as a teen in the 80’s, so obviously DO have anxiety but muddled thru pretty well with little  help for meds.   I got on meds full time,  in the 90’s, due to a horrendous breakup that put me in major depression/anxiety and after a couple years developed a mysterious symptom I call “boatiness” (non vertigo dizziness)  which causes anxiety and was written off as anxiety but never remedied.  I’ve struggled and suffered, missing out on lots of life’s joys…. yet I  kept pushing thru and was “successful” in some ways, trying to do ‘normal’ life things, and keeping hope alive until the last few years. now I am tired and defeated.
 

I tapered decades of Klonopin in 2019 thinking that would stop the boatiness.  But it remains 2 years later.  Now I’m tapering Luvox and I wouldn’t even bother tapering because it probably does help a tiny bit, who knows,  but it makes me lethargic.  It’s been a year of taper so far. I  resigned myself to wasting another year and was suffering along but recently started getting an increase in debilitating symptoms. I really don’t even care if I’m off meds.  I probably do need something  at this point, because my thinking is so skewed to the negative after so much suffering and trauma, watching others live happily normal lives and yet they still complain about their brand of “anxiety.”  I challenge them to try mine.  
 

I think I’m too damaged and disabled to do life without meds now at age 55. This coming from someone who was so hesitant and afraid to take them, I had to go to the hospital to get started on them. I’d like to switch to a different med or add it to the Luvox, but I’m told I can’t add anything or switch because “Luvox is special”.  I have to taper completely off AND have a two week wash out of Luvox even though I’m only on a few grains of it, at this point.  I can’t see how this is true because people are on multi meds all the time and I, personally, was on Luvox with Mirtazipine, but all the drs, ARNP s, and pharmacists are sticking to this “non-mixing Luvox” story, so I suffer another taper.  
 

Family and psych docs are useless… unless their is a pill or procedure, they don’t even want to know about it.  I don’t know the doses, usually middle of the road because I was too scared to go to the high doses. 
 

1980—OCD, kept secret, struggled thru school , age 14

1984—Told mom about OCD, first med anafranil for 6 months helped alot 

1993-1994—Harsh breakup, major anxious depression, too scared to take meds, went to hospital to get help, klonopin/Zoloft 

1996—Started having a symptom I call “boatiness”, never diagnosed, told it was anxiety to go back on meds, Klonopin/Zoloft 

1997-2015—Family, college, work, struggled thru constant boaty dizzy symptom, Zoloft or Lexapro or Paxil or Prozac and Klonopin plus Xanax 

2015-2018 Life becoming more and more limited, decided meds might be part of the problem and/or had barely helped for decades, started first tapers, repeatedly

2018—complete instability and disability, no work, no relationship, limited driving, tapered anti d too fast before klonopin, in  maximum klonopin tolerance, landed in hospital from severe “boatiness” and unreality

2019—Mirtazipine, Luvox, Klonopin, complete instabiltiy but less than 2018

2019—Tapered Mirtazipine and Klonopin 

2020—Luvox only, still disabled, now depressed 

2021—Luvox taper from 100 mg, complete disability,  hopeless, given up,  angry, most of life behind me now 

 

[Kiasofia]

Welcome @Warriormaden

I'm glad you found this forum and hope you have been able to learn more about these drugs and how to taper properly. I will provide some links just in case. Taking multiple drugs tends to make things worse and is potentially dangerous. So it's a relief to hear you have not been allowed to add in another drug.

 

I would focus on tapering Luvox slowly and safely while dealing with the root cause of your symptoms. If you add in another drug after tapering Luvox you risk an adverse reaction which can take a long time to recover from. Starting and stopping psychiatric drugs is bad for the central nervous system (CNS). Each time we start and stop it becomes more and more sensitized. The risk of a bad reaction to restarting the drug or starting other drugs or supplements increases.

Important topics about tests, supplements, treatments, diet

 

We have members who have gone on and off drugs multiple times in the past with no issues and then suddenly they get issues. This is because the effect is cumulative and one day it catches up with them

 

You have a long history of psych drugs. Once we are on the drug carousel it is hard to know what is "us" and what is drug effects. This is well documented in Anatomy of an Epidemic by Robert Whitaker (interview). The Council for Evidence based Psychiatry also has a lot of good information.

 

What was your Luvox dose before you went to 16.5mg? When was your last reduction? Please add this to your signature.

 

About tapering:

Tips for tapering off Luvox (fluvoxamine)

Why taper by 10% of my dosage?

NEVER SKIP DOSES TO TAPER

 

This is your Introductory topic, where you can ask questions and connect with other members.  If you need any advice specific to you and your situation, please ask it here. Otherwise, feel free to join discussions on other threads. We're glad you found your way here. Please stay in touch and let us know how you are doing.

Edited January 7, 2022 by Kiasofia

[Shep]

Welcome to the forum from me, as well, @Warriormaden

 

In addition to all of the great information Kiasofia has written, I want to address the age and damage concern you mention. 

 

16 hours ago, Warriormaden said:

I think I’m too damaged and disabled to do life without meds now at age 55. This coming from someone who was so hesitant and afraid to take them, I had to go to the hospital to get started on them. I’d like to switch to a different med or add it to the Luvox, but I’m told I can’t add anything or switch because “Luvox is special”.  I have to taper completely off AND have a two week wash out of Luvox even though I’m only on a few grains of it, at this point.  I can’t see how this is true because people are on multi meds all the time and I, personally, was on Luvox with Mirtazipine, but all the drs, ARNP s, and pharmacists are sticking to this “non-mixing Luvox” story, so I suffer another taper.  

 

As far as age goes, you may want to check out Altostrata's story. She is the founder of Surviving Antidepressants and she dealt with withdrawal in her 60s. 

 

Alto Strata Occupy APA 2013 video (8 minutes)

 

Here is a more recent interview:

 

Surviving Antidepressants: An Interview with Adele Framer

 

In fact, this forum has many over-50 members who are coming off these drugs and healing. In the long run, it's the best thing you can do for your health. I sense a very resilient and strong attitude beneath the surface - your username includes the word "warrior" and the title of your Intro thread contains "tenacity and pure will." That sounds like someone ready to conquer these drugs once and for all. 

[Moonpie]

@WarriormadenWelcome to SA!   You have come to the right place.. Here you will find encouragement, compassion ,support and help on how to taper all along the way.  I feel your pain and confusion a loops I have been there also.    Please do not think you are too old or too damaged.. I am 68 years old and getting ready to start my 3rd drug taper and 5th year of tapering. There have been times in my muddled brain I have thought of all the years wasted and how much longer will the Lord let me live.  That is WD  speaking I know now. The past doesn't matter but my future. And no matter how long I have on this Earth, my life will be much better without these drugs. The improvements I see as I go along and feeling like my old self at times shows me it is all worth it. I didn't realize what the drugs were doing to me until I started coming off of them.   I was shocked. It has not been an easy journey but I am getting better every step of the way. And cannot wait until till I am completely off of these meds.  I'm looking at 2 more years, after I start my next taper but it is so worth it.  We are not damaged, we are just not healed yet. You are a strong woman and you have been through a lot. I have no doubt you can taper off these drugs and heal. You have strength in you that you cannot see  because of your suffering. It clouds our minds not just our emotions.  Draw on all that is here to help you to take that 1st step.  I look forward to your  updates.

[Warriormaden]

I appreciate everyone’s comments but I don’t think I can face another taper in this condition.  I have no resilience.  I just want the suffering to stop.  Maybe I could if I was able to do some things while it was ongoing but I can’t drive, can’t socialize or engage in life,  can’t even sit comfortably in my own house most days because of the horrid boaty/dizzy sensation. For a time leading up to this setback this week, I could do limited activities and was able to bear it. I’m not even sure if this “boaty” symptom is related to meds or not enough meds. I have done a lot of research and only thing I can come up with that it may be is med damage and/or something called PPPD, which is treated with psych meds. 

[Kiasofia]

It is important to hold the taper until symptoms settle down.

 

What was your Luvox dose before you went to 16.5mg? When was your last reduction? Please add this to your signature.

[Warriormaden]

@Kiasofia I will hold or go back up a tiny bit. I am using a 10 mil syringe and the amounts I’ve been reducing are microscopic and it’s so hard to believe it could be the cause of the increased symptoms. I micro reduce so I measure my doses by .25 milligram increments. It’s not set in stone, just based on how I feel.  Here is a sample 
 

Nov 1 2021    19.5 mg 

Nov 8 2021   18.5 mg 

Nov 13 2021  18.25 mg

Nov 22 2021  17.75 mg 

Nov 28 2021  17.5 mg

Dec  8 2021   17.0 mg

Dec 13 2021  16.75 mg 

Dec 15  2021  16.5  mg 

Dec 20  2021  16.0 mg

Dec 26 2021  15.75 mg

Jan 1 2022    15.25 mg 

New problems started on Jan 3 2021
 

My sisters are like “YoU mUSt Be sO sEnSitIve.” They are good helpful sisters but it makes you feel pathetic. 
 

 

 

[Warriormaden]

10 hours ago, Moonpie said:

@WarriormadenWelcome to SA!   You have come to the right place.. Here you will find encouragement, compassion ,support and help on how to taper all along the way.  I feel your pain and confusion a loops I have been there also.    Please do not think you are too old or too damaged.. I am 68 years old and getting ready to start my 3rd drug taper and 5th year of tapering. There have been times in my muddled brain I have thought of all the years wasted and how much longer will the Lord let me live.  That is WD  speaking I know now. The past doesn't matter but my future. And no matter how long I have on this Earth, my life will be much better without these drugs. The improvements I see as I go along and feeling like my old self at times shows me it is all worth it. I didn't realize what the drugs were doing to me until I started coming off of them.   I was shocked. It has not been an easy journey but I am getting better every step of the way. And cannot wait until till I am completely off of these meds.  I'm looking at 2 more years, after I start my next taper but it is so worth it.  We are not damaged, we are just not healed yet. You are a strong woman and you have been through a lot. I have no doubt you can taper off these drugs and heal. You have strength in you that you cannot see  because of your suffering. It clouds our minds not just our emotions.  Draw on all that is here to help you to take that 1st step.  I look forward to your  updates.

Thank you for your kind words and thank you for sharing. I’ve never seen the benefits of coming off of any of these drugs yet, I guess, is part of my hesitancy and doubt that this will work.  I feel like maybe I was more functional when I was on them , even though I was extremely dysfunctional/disabled then too, and started this whole thing because I thought the tolerance or long term use was the problem. But after 5 years of this tapering project, I thought things would improve but I have only gotten worse and don’t know if it is because I’ve less drugs in me or what.  I rarely see anyone with my one particular disabling symptom.  

[Warriormaden]

13 hours ago, Shep said:

Welcome to the forum from me, as well, @Warriormaden

 

In addition to all of the great information Kiasofia has written, I want to address the age and damage concern you mention. 

 

 

As far as age goes, you may want to check out Altostrata's story. She is the founder of Surviving Antidepressants and she dealt with withdrawal in her 60s. 

 

Alto Strata Occupy APA 2013 video (8 minutes)

 

Here is a more recent interview:

 

Surviving Antidepressants: An Interview with Adele Framer

 

In fact, this forum has many over-50 members who are coming off these drugs and healing. In the long run, it's the best thing you can do for your health. I sense a very resilient and strong attitude beneath the surface - your username includes the word "warrior" and the title of your Intro thread contains "tenacity and pure will." That sounds like someone ready to conquer these drugs once and for all. 

Thank you, I will check out the links you provided. 

[Warriormaden]

13 hours ago, Kiasofia said:

Welcome @Warriormaden

I'm glad you found this forum and hope you have been able to learn more about these drugs and how to taper properly. I will provide some links just in case. Taking multiple drugs tends to make things worse and is potentially dangerous. So it's a relief to hear you have not been allowed to add in another drug.

 

I would focus on tapering Luvox slowly and safely while dealing with the root cause of your symptoms. If you add in another drug after tapering Luvox you risk an adverse reaction which can take a long time to recover from. Starting and stopping psychiatric drugs is bad for the central nervous system (CNS). Each time we start and stop it becomes more and more sensitized. The risk of a bad reaction to restarting the drug or starting other drugs or supplements increases.

Important topics about tests, supplements, treatments, diet

 

We have members who have gone on and off drugs multiple times in the past with no issues and then suddenly they get issues. This is because the effect is cumulative and one day it catches up with them

 

 

You have a long history of psych drugs. Once we are on the drug carousel it is hard to know what is "us" and what is drug effects. This is well documented in Anatomy of an Epidemic by Robert Whitaker (interview). The Council for Evidence based Psychiatry also has a lot of good information.

 

What was your Luvox dose before you went to 16.5mg? When was your last reduction? Please add this to your signature.

 

About tapering:

Tips for tapering off Luvox (fluvoxamine)

Why taper by 10% of my dosage?

NEVER SKIP DOSES TO TAPER

 

This is your Introductory topic, where you can ask questions and connect with other members.  If you need any advice specific to you and your situation, please ask it here. Otherwise, feel free to join discussions on other threads. We're glad you found your way here. Please stay in touch and let us know how you are doing.

Thank you very much Kia for all your help here. Can you please see the comment I wrote to moonpie  below. It might explain why I am so doubtful about if this will work for me. 

[ChessieCat]

@Warriormaden

 

1 hour ago, Warriormaden said:

Can you please see the comment I wrote to moonpie  below.

 

You did not include the comment.

[Warriormaden]

57 minutes ago, ChessieCat said:

@Warriormaden

 

 

You did not include the comment.

Yikes and I thought I was semi tech savvy 😞. I don’t know how to include a quote of someone else’s in another person’s comment. I thought maybe you could just see it since there are only a few comments on this thread. I’ll  paste it right here…

 

”Thank you for your kind words and thank you for sharing. I’ve never seen the benefits of coming off of any of these drugs yet, I guess, is part of my hesitancy and doubt that this will work.  I feel like maybe I was more functional when I was on them , even though I was extremely dysfunctional/disabled then too, and started this whole thing because I thought the tolerance or long term use was the problem. But after 5 years of this tapering project, I thought things would improve but I have only gotten worse and don’t know if it is because I’ve less drugs in me or what.  I rarely see anyone with my one particular disabling symptom. “

[Kiasofia]

11 hours ago, Warriormaden said:

Nov 1 2021    19.5 mg 

Nov 8 2021   18.5 mg 

Nov 13 2021  18.25 mg

Nov 22 2021  17.75 mg 

Nov 28 2021  17.5 mg

Dec  8 2021   17.0 mg

Dec 13 2021  16.75 mg 

Dec 15  2021  16.5  mg 

Dec 20  2021  16.0 mg

Dec 26 2021  15.75 mg

Jan 1 2022    15.25 mg 

New problems started on Jan 3 2021

It looks like you need to do smaller decreases and longer holds. I suspect the guidelines of 10% reductions are too much for you. For your next reduction I suggest calculating what 5% of a dose reduction would be, spread that over a month and then do a minimum two week hold.

The Brassmonkey Slide Method of Micro-tapering

The slowness of slow tapers

 

11 hours ago, Warriormaden said:

My sisters are like “YoU mUSt Be sO sEnSitIve.” They are good helpful sisters but it makes you feel pathetic. 

Your brain has adapted to these drugs and has a hard time getting off. Nothing about that is pathetic❤️

How Psychiatric Drugs Remodel Your Brain 

 

 

11 hours ago, Warriormaden said:

Thank you for your kind words and thank you for sharing. I’ve never seen the benefits of coming off of any of these drugs yet, I guess, is part of my hesitancy and doubt that this will work.  I feel like maybe I was more functional when I was on them , even though I was extremely dysfunctional/disabled then too, and started this whole thing because I thought the tolerance or long term use was the problem. But after 5 years of this tapering project, I thought things would improve but I have only gotten worse and don’t know if it is because I’ve less drugs in me or what.  I rarely see anyone with my one particular disabling symptom.  

You have a long history of using these drugs and it takes a long time for the brain to recover. From your signature it doesn't appear it ever got the chance. A safe taper that doesn't trigger symptoms (often misinterpreted as rebound) can take years. I suspect you didn't spend several years tapering each of the drugs you were on before Luvox?

 

I don't think you should rush getting off Luvox. My main concern is your wish to get off Luvox to replace it with something else. I'm not ideologically against people using drugs to feel better. But these drugs are very dangerous, and I fear what the next drug will do to your sensitized brain.

 

Anatomy of an Epidemic by Robert Whitaker (interview).

The Council for Evidence based Psychiatry

Edited January 8, 2022 by Kiasofia

[Warriormaden]

On 1/8/2022 at 4:55 AM, Kiasofia said:

It looks like you need to do smaller decreases and longer holds. I suspect the guidelines of 10% reductions are too much for you. For your next reduction I suggest calculating what 5% of a dose reduction would be, spread that over a month and then do a minimum two week hold.

The Brassmonkey Slide Method of Micro-tapering

The slowness of slow tapers

 

Thank you for your help sorry this is so long.  I’ve already spent 7 years trying to get off these things slowly, since 2014 is when I first got the thought that I was in benzo tolerance. I will try a 5% reduction. 😢😢😢 Last time I was off an AD entirely for a short time, was late 2018.  I tapered the AD before the benzo back then and I was so boaty/dizzy, I couldn’t even sit still or rest my head even while lying down.  It was horrific.  I assumed the boaty sensation was from the benzo tolerance and also tapering the AD first and if I did it the other way around, it would go away but I couldn’t get back on the Zoloft and so I ended up in the hospital on the Luvox.   They said the boaty feeling is in my head and the AD’s will take it away. And honestly, I’d stay on them if they didn’t make me unmotivated. Anything is better than that dizzy, boaty feeling.  I was never a depressed person. I am now from sheer exhaustion of these efforts. 

On 1/8/2022 at 4:55 AM, Kiasofia said:

 

Your brain has adapted to these drugs and has a hard time getting off. Nothing about that is pathetic❤️

How Psychiatric Drugs Remodel Your Brain 

 

 

You have a long history of using these drugs and it takes a long time for the brain to recover. From your signature it doesn't appear it ever got the chance. A safe taper that doesn't trigger symptoms (often misinterpreted as rebound) can take years. I suspect you didn't spend several years tapering each of the drugs you were on before Luvox?

 

No, i was switched over to a new drug.  But I never did a rapid taper or cold turkey. 
 

 

On 1/8/2022 at 4:55 AM, Kiasofia said:

 

I don't think you should rush getting off Luvox. My main concern is your wish to get off Luvox to replace it with something else. I'm not ideologically against people using drugs to feel better. But these drugs are very dangerous, and I fear what the next drug will do to your sensitized brain.

 

 

Anatomy of an Epidemic by Robert Whitaker (interview).

The Council for Evidence based Psychiatry

I appreciate that. Let me explain my thoughts process. Maybe you’ve seen it before. My desire to replace it with something else comes from the fact that obviously I do have problems. Im not going to pretend life was great ot why would I have gotten meds. I was more reactive to the initial situation that started this back in the 90’s than the average person or I wouldn’t have went to the hospital and gotten on these drugs in the first place. I see a lot of people saying they were normal, their lives were good, they were just in a tough spot, couldn’t sleep, stressed from work etc etc and not taught how to deal with normal overwhelming emotions is why they ended up on AD’s. I don’t think that’s the case with me.  I do have OCD since I was 14. I did disassociate from my initial trigger. It wasn’t a normal reaction to a breakup. I still have OCD, my thoughts still skew to the negative and fearful. I was always anxious driving or going far from home. Nothing has changed since then except, since starting tapers, I’m way more disabled than while still on them even if they were causing hideous problems on. I thought Klonopin was the problem and I would feel better but it’s been two years since that taper. Everyone said how much better they felt tapering their benzo, not me.   Basically, I have all the problems that started me on these drugs except now I’m way worse and way worse since starting tapers. 
 

[Kiasofia]

1 hour ago, Warriormaden said:

My desire to replace it with something else comes from the fact that obviously I do have problems.

I understand, really. And if these drugs were a safe option for dealing with these problems, then I'd be fine with people choosing this path. The problem is, they are not safe, as this forum so clearly shows.

[ChessieCat]

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

 

Your new topic has been moved to the existing topic:

 

dizziness-vertigo-light-headedness-rocking-or-swaying-sensations

 

[Warriormaden]

1 hour ago, ChessieCat said:

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

 

Your new topic has been moved to the existing topic:

 

dizziness-vertigo-light-headedness-rocking-or-swaying-sensations

 

Yes, I’ve done the searches and they are great but this one has a new aspect in it… does it just get buried unless someone searches or will I get real time answers ? 

[Warriormaden]

@ChessieCathow will I get real time feed back on this of it gets buried into an old thread? I really need help with this symptom. I need to know if anyone else has heard of PPPD as opposed to this being a symptom of meds or tapering.. 

[ChessieCat]

SA is staffed by a small number of unpaid, unrostered peers.  The main focus of the staff is to assist members with their tapering questions and issues which are in their Introduction topic.  The symptom topics are basically a discussion of members' experiences.  When a new post is made in the symptom topics the topic will go to the top of the unread list for members so it not a "dead" topic.  Generally it is the members who have a similar experience/s of that issue that post.  Depending of how busy the staff are assisting members with their drug, they might check the other areas of the site and respond if they have a suggestion to make.

 

This is a search that I did for PPPD in the Introductions forum.  You could visit those members' Introduction topics and ask them about their experience:

 

https://www.survivingantidepressants.org/search/?q=PPPD &quick=1&type=forums_topic&nodes=3

 

 

If you are looking for information about PPPD that is not related to taking the drugs, which is a side effect, or tapering, which is a withdrawal effect, then I suggest that you do a general internet search.  SA is a site about psychiatric drug withdrawal, not general medical issues.

[Warriormaden]

12 hours ago, ChessieCat said:

SA is staffed by a small number of unpaid, unrostered peers.  The main focus of the staff is to assist members with their tapering questions and issues which are in their Introduction topic.  The symptom topics are basically a discussion of members' experiences.  When a new post is made in the symptom topics the topic will go to the top of the unread list for members so it not a "dead" topic.  Generally it is the members who have a similar experience/s of that issue that post.  Depending of how busy the staff are assisting members with their drug, they might check the other areas of the site and respond if they have a suggestion to make.

 

This is a search that I did for PPPD in the Introductions forum.  You could visit those members' Introduction topics and ask them about their experience:

 

https://www.survivingantidepressants.org/search/?q=PPPD &quick=1&type=forums_topic&nodes=3

 

 

If you are looking for information about PPPD that is not related to taking the drugs, which is a side effect, or tapering, which is a withdrawal effect, then I suggest that you do a general internet search.  SA is a site about psychiatric drug withdrawal, not general medical issues.

Thanks for responding, at least.  It would b enough to tell me you are busy without the other comments which serve only to admonish and embarrass.  I won’t ask you again as I find you extremely condescending to people who are struggling. This IS a symptom of the drugs IMO. I’m trying to find out if other people have been told the same thing. I’m not stupid and I know how to differentiate  between what I should ask in a forum about psychiatric drug withdrawal and general health issues. 

[manymoretodays]

Hi WarriorMaden,   

 

Did you get a chance to look at the link that Ccat provided with the content from the search of other members with PPPD?   I did.  It was great.  And great advice given that you might post in some of those members threads too, for potential discussion. 

 

You are new I see, and we can grant you a learning curve time I think, on learning some of the forum etiquette or dos and donts.  Making personal attacks on moderators is not appreciated nor tolerated here.  I, did not find anything condescending at all in Ccat's approach to you.   Or admonishing or embarrassing.  I am sorry you took it that way.

 

We, moderators, work really hard to keep this site tidy,  and more organized, for members use.  That is why your choice in putting your topic where you wanted it was re-directed.  Simple as that.  And further instructions were offered as well. 

 

Please take some time to familiarize yourself with this site.  Start with the Read this First Forum.  Go to the Home page and you'll see the different forum lay out.  Then look at some of the basics about using this site.  That might help you understand that you were not being picked on.                                   

 

Thank you.  (apologies for run on post from droid too).  And welcome aboard from me as well. 

 

Love, peace, healing, and growth, moderator manymoretodays(mmt)

Edited January 14, 2022 by manymoretodays
re formatted a bit

[Warriormaden]

@manymoretodaysYes, sorry if felt my urgent requests for help were being overtaken by protocol and formatting.  It doesn’t matter as I won’t get better anyway. I can’t suffer this way much longer.  I’ve read the threads and I don’t see anyone in here who has suffered from strange symptoms for decades as I have even while on the meds. Most started suffering late in the game or while tapering or withdrawing.  🥲 

[ChessieCat]

My apologies, but I misread/misinterpreted something/some things you posted where I thought you had said that the floaty boat sensation started prior to taking any psychiatric drugs and that you might have been prescribed psychiatric drug/s for the floaty boat condition.  That is why I made the statement that SA does not about general medical issues.

[Happy2Heal]

3 hours ago, Warriormaden said:

It doesn’t matter as I won’t get better anyway. I can’t suffer this way much longer.  I’ve read the threads and I don’t see anyone in here who has suffered from strange symptoms for decades as I have even while on the meds. Most started suffering late in the game or while tapering or withdrawing.  🥲 

hi @Warriormaden and welcome to the forum!

I am sorry you are having such a hard time. 

 

there are so many threads here, I don't think it's possible you've read them all just yet!  but I would be surprised if there was not at least a couple of others who also suffered from "strange symptoms" for decades as you have.

I have a long drug history too, beginning when I was 18 and ending officially in 2017, although it took a few more years for me to recover to where I am now. 

I will be 66 soon.  This was by far the best thing I have ever done for myself and for my health.   I had strange symptoms for years and years but there was no way to know if they were from the drugs, or from being switched from one drug to another or from when a drug was discontinued cold turkey. The drs I had were quite keen to try to convince me that my symptoms were all signs that I needed more and more drugs however. 😕

  Looking back there are times when I can be fairly sure that what I was experiencing was withdrawal symptoms. Other times I have no idea. Did I have problems before I was prescribed these drugs? yes. I was suffering from PTSD but that was not a recognized diagnosis back then except for combat veterans.  

 

I see that you took meds for 6 mos in 1984 but didn't take any others til 1993.  Do you recall how you were feeling and doing back then? You felt it helped, do you know why it was discontinued? did you have this boaty feeling back when you were 14? 

 

 

I am interested in know more about this (for personal reasons) I looked up PPPD and found this: https://www.neuroequilibrium.in/what-is-persistent-postural-perceptual-dizziness-pppd/    I have had some balance and dizziness issues but never really connected them to the drugs or to going off of the drugs. I always found some other possible reason. But I see this PPPD thing is a much longer term problem.

 

 

It says that SSRIs and SNRIs are prescribed for this condition. You were on at least one SSRI, did it help at all with that feeling?

 

Have you had any kind of therapy like CBT? 

 

Lots of people here had problems before they were prescribed psych drugs and may still have the same problems after they stop taking them. That doesn't in any way mean that they need to take a drug for that problem. Many if not most of these issues can be addressed in other much more long lasting ways. These dangerous psych drugs were only tested for short periods of time and were NEVER intended to be used long term, since there was no long term studies on their effects. And as soon as people starting to notice long (and short) term problems with these drugs, they were already so popular and earing the big drug companies so much money that any reports of problems were aggressively downplayed or refuted.

 

in any case, you are not exactly the same person you were when you were 14! you have grown and matured and had lots of life experiences. You don't yet know what life is like for you without the psych meds in your system.

 

Check out the Success Stories section, you will see that there are many us who went thru recovery later in life and are doing great now.

 

 

 

 

 

 

 

 

 

 

[Longroadhome]

@Warriormaden

hi there 

I also have the floaty boat symptom 24/7. It came on while tapering 18 months ago and hasn’t left. I’m still tapering . It’s not my only symptom but it is the most debilitating and the one I detest the most. 
There doesn’t seem to be many of us on this site however on Benzo Buddies there are many with exactly the same floaty boat symptom. 
im beginning to wonder if mine is from the AD or if it could be from the Pregabalin I take ( given for WD symptoms of Paxil) as this acts like a Benzo. Either way I feel the only way is to taper off both meds. Like you I am getting lower on my taper but symptoms persist and I don’t have windows  only some days more manageable than others.
Have you had the floaty boat 24/7 since the 90s? Or has it been on and off? 
Even though you have been off the Benzo for  2 years you can still be going through WD from this drug. Coupled with the tapering could be adding to your intense symptoms. 
 

[Warriormaden]

On 1/17/2022 at 11:16 PM, Longroadhome said:

@Warriormaden

hi there 

I also have the floaty boat symptom 24/7. It came on while tapering 18 months ago and hasn’t left. I’m still tapering . It’s not my only symptom but it is the most debilitating and the one I detest the most.
 

I’m sorry , I know how awful it is.  It’s a completely destabilizing scary sensation making you feel unsafe in your own body and no way to escape.  

On 1/17/2022 at 11:16 PM, Longroadhome said:

There doesn’t seem to be many of us on this site however on Benzo Buddies there are many with exactly the same floaty boat symptom. 
im beginning to wonder if mine is from the AD or if it could be from the Pregabalin I take ( given for WD symptoms of Paxil) as this acts like a Benzo. Either way I feel the only way is to taper off both meds. Like you I am getting lower on my taper but symptoms persist and

I don’t have windows  only some days more manageable than others.

 

Yes, same here, only some days more manageable than others. This week I seemed to have a better week after holding, but there seems to be no rhyme or reason half the time , which is why I was asking about other possibilities.  I did use benzo buddies a lot and they helped me a ton but came here for the Luvox taper.  

 

 

On 1/17/2022 at 11:16 PM, Longroadhome said:

Have you had the floaty boat 24/7 since the 90s? Or has it been on and off? 
Even though you have been off the Benzo for  2 years you can still be going through WD from this drug. Coupled with the tapering could be adding to your intense symptoms. 
 

I never had it before benzos or anti d’s.  I got on them in 1993. I was on them for about a year and tapered off in 1994.  Then the boaty started in 1995.   Then I was told it was anxiety, so I got back on them and it went away for about 1 year.  But it came back and it has been with me to some degree or another ever since, every waking hour, so we just thought the anti d’s  effectiveness was wearing off and kept switching. So now who knows if it was the meds, the lack of meds, the tolerance to meds or something entirely different.  It has been worse since beginning tapers over the past few years, however.  

Good point about the possible connection to some sort of prolonged benzo withdrawal effect.  
 

@LongroadhomeHow does yours feel? Mine feels exactly like they describe in a syndrome called Mal du Debarquement Syndrome ….MdDs….. rocking and swaying while standing and sitting and feeling like being on a waterbed while lying down, gravity pulls to the side, random floor drops.  It’s better when moving. I tend to stand and rock when it’s bad. 
 

Interesting that you mentioned that yours happened while tapering too.   I just read some interesting stuff on it and it’s relationship to SSRI’s, benzos, gabapentin, etc. so maybe there is a connection.  Like maybe going off of them triggered the syndrome and since the meds are one of the cures… What a horrible catch 22.  If you want to read it here is a link https://dizziness-and-balance.com/treatment/rehab/MdDs.html

 

It says….“There are some reports of MdDS following use or withdrawal from serotonergic medications, such as SSRI antidepressants. The connection here is that serotonin may inhibit glutamate, an excitatory transmitter in the vestibular nucleus (Smith and Darlington, 2010.). This idea also provides an explanation why serotonergic medications may help MdDS (see treatment section). Nonetheless, most MdDS patients did not withdraw from SSRIs.”

Sorry for the delayed response and weird formatting .  I’m just energy-less these days and having trouble using these quote replies.  

 

[Longroadhome]

Hi there 

thank you for your reply. 
Has it never occurred to you that coming off and staying off the medication may eventually take it away ? 
yes mine is exactly the same as Mal D syndrome too. 
 

if you read  Benzo  Buddies it does  eventually go away once off the meds and healed. 

[Warriormaden]

Of course it has occurred to me. I’m not sure why you phrased it that way.  What do you think I’ve been doing for all these years? Tapering to the point of complete non function ability is what I’ve been doing.   I’m just questioning ( as many people seem to have the same problem) that the more I taper, the worse I get.      I have never seen anybody on benzo buddies who had this particular symptom this severe for this many years have it go away. Not one.  In fact, I rarely see anyone with these symptoms.  

[Longroadhome]

Sorry I was rushing into work so prob didn’t come across as I meant. 
When you had it in the 90s after coming off Medication did you have other symptoms or just that ? 
 

Do you have other WD symptoms now along with this symptom? 
 

I have many along with floaty boat. And the lower the taper the worse they have all got. 
 

if you type in Google floaty boat Benzo buddies many many pages come up for this condition. 
 

sorry for offence I may have caused it was not intended. 

[Longroadhome]

@Warriormaden

also Baylissa Frederick had this symptom for over two years and she healed. 
she has seen many with this symptom but has never known anyone have it after withdrawal was over.

I asked her about it being connected to Mal D syndrome a while ago and she said it may seem the same but the cause is different. 

I have to be honest and the longest I have seen someone with this problem was nine years on Benzo Buddies . However she was still on medication and had never come off. Those that have completed their taper tend to heal Over time if completely med free. 

[Lindseyb]

On 1/14/2022 at 10:18 PM, Happy2Heal said:

 

  I am interested in know more about this (for personal reasons) I looked up PPPD and found this: https://www.neuroequilibrium.in/what-is-persistent-postural-perceptual-dizziness-pppd/    I have had some balance and dizziness issues but never really connected them to the drugs or to going off of the drugs. I always found some other possible reason. But I see this PPPD thing is a much longer term problem.

 

 

 

You say you are healed, but you still have balance and dizziness issues?

I have pppd from being cold turkeyed.

[Warriormaden]

On 1/27/2022 at 1:27 AM, Longroadhome said:

Sorry I was rushing into work so prob didn’t come across as I meant. 
When you had it in the 90s after coming off Medication did you have other symptoms or just that ? 
 

Do you have other WD symptoms now along with this symptom? 
 

I have many along with floaty boat. And the lower the taper the worse they have all got. 
 

if you type in Google floaty boat Benzo buddies many many pages come up for this condition. 
 

sorry for offence I may have caused it was not intended. 

You’re fine.  Sorry I’m extremely sensitive right now. I really don’t have many other symptoms that I can explain except tinnitus and irritability. Everything is overshadowed by the boaty symptom. It causes major anxiety and depression.  

[Warriormaden]

I am trying to get someone to help me with specific taper questions. Is this the best way to do it, to add onto my Introduction?  

 

Looking at my general outline, clearly I went way too fast last year, but didn’t notice too much coming down from the higher dose, so I continued.  I was tapering Ok or so I thought, down to 15.5 mg Luvox, until January 2022, then my horrific boaty swaying, rocking symptom ramped up, so I held. Then it kept going, so I increased. Now I’m practically back up to where I was in the beginning of October (21.5) with no let up in the boaty. I don’t complain too much about other symptoms because this is the only one that completely disables me. 

 

It calms down for hours on most days but usually not for a full day…seems to be later afternoon or evening.   All doses are at about 7 :30 pm until the end when I tried splitting thinking it was wearing off.  I can’t find any pattern. I sometimes have gotten boaty at night even after taking my dose, and also some mornings it isn’t there. It did get worse when I took some vitamins that had B in them, so stopped that.  

 

Can anyone see a pattern in my general outline below? Sorry it’s so long. 

 

Also, since this is a very short acting med, after many times asking, Dr has agreed to bridge/cross taper to Lexpro if I want (even though Luvox needs a two week washout due to it increasing the level of some meds and all other providers refused), so I’m on the fence with that.  Don’t want serotonin syndrome, but as it stands now, I am non functional and despairing , most days.  Any opinions on the bridging of short half life AD’s to an already destabilized nervous system? 

 

1/1/2021 75 mg

1/15/2021 66 

2/1/2021 50 

2/15/2021 37 

3/1/2021 25 

3/16/2021 22 

3/20/2021 18 

3/24/2021 fast taper caught up with me super boaty and vertigo episode will increase 

3/24/2021 25 

3/27/2021 37 

3/31/2021 41 

4/5/2021 50 

4/15/2021 47 

5/1/2021 43 

6/1/2021 37 

7/1/2021 35 

7/25/2021 30 

7/29/2021 29 

7/28/2021 28

8/5/2021 27 

8/11/2021 25 

8/26/2021 22.5 

9/4/2021 23.75

9/13/2021 22.75

9/29/2021 21.75 

10/7/2021 21

10/14/2021 20.5

10/31/2021 19.5

11/9/2021 18.5

11/14/2021 18.25

11/22/2021 17.75

11/29/2021 17.5

12/9/2021 17.0

12/13/2021 16.75

12/19/2021 16.25

12/28/2021 15.5

1/2/2022 15.25 halt

1/5/2021 16.26

1/14/2022 16.5

2/9/2022 17.5

2/12/2022 18

2/15/2022 19, tried splitting doses for a few days

2/18/2022 19, dose all at night again. 
 

If you’re reading this, thank you. I’m so tired. Been many years of suffering. 

 

Edited February 20, 2022 by ChessieCat
reduced font size

[ChessieCat]

4 hours ago, Warriormaden said:

2/15/2022 19, tried splitting doses for a few days

 

You might not have given the split dosing long enough.

 

Generally it takes about 4 days for a dose to get to full level in the blood and a bit longer for it to register in the brain.  This may be a little bit short for a shorter half life drug, but it looks like you only split the dose for 3 days.

 

The drug has a short half life; 12-13 hours.  You didn't stay on the split dosing for long enough to see if it worked.

 

I think it would be better to dose split instead of changing to a different drug.

 

4 hours ago, Warriormaden said:

Also, since this is a very short acting med, after many times asking, Dr has agreed to bridge/cross taper to Lexpro if I want (even though Luvox needs a two week washout due to it increasing the level of some meds and all other providers refused), so I’m on the fence with that.  Don’t want serotonin syndrome, but as it stands now, I am non functional and despairing , most days.  Any opinions on the bridging of short half life AD’s to an already destabilized nervous system? 

 

It is generally not a good idea to switch drugs.  You can get withdrawal from the first drug, which the new drug might not cover, and you might get adverse effects from the new drug.  Because of the two variables it can be difficult to know what is causing any issues.

 

And Lexapro (escitalopram) would NOT be a good drug to change to in my opinion.  It is a VERY STRONG drug.  Citalopram is a gentler sibling than escitalopram.

 

There is no guarantee that a drug switches/cross tapers/bridge would work.  See Post #1 of this topic for the Prozac Bridge/Switch:

 

the-prozac-switch-or-bridging-with-fluoxetine

 

 

4 hours ago, Warriormaden said:

clearly I went way too fast last year, but didn’t notice too much coming down from the higher dose, so I continued.

 

Time is what can help with this.  Stabilising after a too fast taper can take a long time and can take much longer than we might expect and would like it too.

[Warriormaden]

Thank you very much for looking thru all that.   
I wanted to update …

I took my full updose of 18 mg this evening and about an hour after the boaty rocking  calmed down, not gone but better.  What does that mean ? Maybe, it’s acting like a benzo? I’m starting to think the only reason I was able to get off the benzo two years ago was because Luvox acts like one for me maybe.  

I didn’t seem to have this bad of a wearing off problem at even a slightly higher dose like 25 mg.  Does this have something to do with the lower dose not being able to reach a steady state?  Maybe I should go back up to 25 and plan to spend the next two years doing 1 mg a month or something.   I’m stressed a bit because I don’t know how I’ll ever get off of it if it wears off intraday. And if I split it, won’t my body think it’s only taking half the dose for half the day and freak out every day? What a nightmare.  

 

[ChessieCat]

1 hour ago, Warriormaden said:

And if I split it, won’t my body think it’s only taking half the dose for half the day and freak out every day?

 

No, that's not how it works.  It keeps the level of drug more steady.  As an example a person who takes a drug that has a 24 hour half life, if they wanted to, could split their dose, taking it 12 hours apart.  If they wanted to they could take it 3 times a day 8 hours apart.  The level of the drug in the body would actually be more steady taking it more times throughout the day, but the drugs are designed to be able to be taken 24 hours apart for convenience.

 

From https://www.drugs.com/monograph/fluvoxamine.html

 

Administration

Oral Administration

Immediate-release Tablets

Administer orally once or twice daily without regard to meals.

Administer dosages ≤100 mg daily in adults or ≤50 mg daily in pediatric patients as a single daily dose at bedtime; higher dosages generally given in 2 divided doses, either as equally divided doses or as unequal doses with the larger dose given at bedtime.

 

Edited February 20, 2022 by ChessieCat