Willowboy: withdrawal challenge completed now onto MDDS boss level

[willowboy]

Hello all,

 

Firstly let me say thanks to the people who run this site for creating such a supportive environment here, this site was always very helpful to me as I was going through withdrawal. I am now returned as I am dealing with another health issue but I will get into that below.

 

My story very quickly:

 

Took fluoxetine 20 MG starting in 2013. Worked very well for me and helped me get my life on track. 

Tried to "wean" off but went way too fast in July 2017. Was rocked by withdrawals and immediately went back to 20 MG fluoxetine and then began an almost year long taper. 

 

I'm now going to try to list all the symptoms I suffered from at the onset of withdrawal but it's going to be very hard for me to remember. In no particular order:

 

Terrible brain fog | didn't sleep for months followed by early wake ups | terrible head pressure and terrible headaches | exercise intolerance | uncontrollable sweating | terrible PSSD (literally thought I was going to need a penile implant to be able to have kids) | Visual problems (light sensitivity, visual snow, floaters) | terrible muscle pain, considered myself to have fibromyalgia | Tinnitus | Oh christ I could go on but you get the gist by now.

 

Due to a new health issue it has now clearly dawned on me that I had basically recovered all of this with the exception of some residual vision issues by July 2019. As my CNS became more robust, my life did too. 

 

Then in the middle of July I took a short 30 minute ferry ride and I came down with what is called MDDS (Mal De Debarquement Syndrome). My brain didn't leave the boat. Essentially its a neuro condition where your vestibular system gets messed up and screws up your sense of balance among other issues. For a lot of people it feels like seasickness on land. I've been suffering from it for 5 weeks now and while my symptoms have warped - some for better, some for worse mostly because of all the stress this is causing me - I still totally have the syndrome. At the moment I am dealing with:

 

Head/ear pressure and sometimes pain | brain fog | feeling like I'm on a boat while walking | sometimes I notice a sense of motion while still | Nausea + Sleeplessness as well but I'm pretty sure these are mostly caused by anxiety which is my reaction to the other symptoms. 

 

I really wanted to post about it here because I know a lot of people suffer from vestibular problems related to withdrawal and so there are a lot of people here who know exactly what I'm going through! It's honestly like God gave me all SSRI withdrawal symptoms except vestibular issues, allowed me to recover to 90% on all of them, and then he dragged me back by my collar and said nope you're getting those too. 

 

I'm gonna do all I can (without using meds) to progress my condition and hopefully I'll feel comfortable enough with how things are going to track my results here. 

 

Holding hands with all of you,

Edited August 27, 2019 by ChessieCat

[Gridley]

 

Welcome to SA, willowboy.

 

If you will Google "SurvivingAntidepressants vestibular" you will find several threads dealing with vestibular issues.

 

We recommend using non-drug techniques to cope with withdrawal.  Take a look at the links contained in the following link to see which techniques might be helpful to you.

 

Non-drug techniques to cope

 

Regarding the anxiety you mentioned, here are some techniques for dealing with anxiety.

 

Audio:  How to Recover from Anxiety - Dr Claire Weekes
 

VIDEO:  Peace from Nervous Suffering - Claire Weekes (1 hour) (http://sendvid.com/vgquc1dg)
 

Anxiety Stuff - all kinds of stuff about anxiety attacks and things that help …

 

10 minute Restorative Yoga for Relaxation | Up the wall

This is your Introduction topic, where you can ask questions, post updates and connect with other members.  We're glad you found your way here.

 

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[Gridley]

14 hours ago, willowboy said:

vestibular system gets messed up and screws up your sense of balance among other issues.

 

You might consider seeing an eye, nose, throat specialist just to rule out any physical causes.

[Clatterbust]

Hey man. Sorry to hear about your new problem. However,  since you were able to recover from antidepressant withdrawal, you probably will be able to recover from this (or almost anything really). On that note, could you elaborate on how your recovery happened (especially pssd).What exactly were your symptoms? How long after you were off drugs did recovery happen? And did it occur gradually? I think you could help many people by answering these questions. 

[willowboy]

Seems like bad brain fog + head pressure/pain only really show up on rainy days when the barometric pressure is low. Ear pressure is almost completely gone. I've been really depressed and anxious due to the sense of motion lately, which of course makes everything more difficult, but when I'm able to step outside of that I'm able to see myself being a lot more capable at work. Gonna hit 2 months in on Sunday. Yesterday I had some good little stretches where walking felt almost normal. I've returned to going to the gym. If this damn phantom sensation of motion would go away I'd be 100% fighting fit. 

 

I really like the way @TedB who went through basically the same thing put it: "my enemy in this is my inability to remember how far I've come." A month ago I had worse floaty feelings and was so brain fogged I was basically incapable of working. If I could get past the depression and anxiety and just be experiencing the floaty feeling, I'd basically be living like my old self right now. And of course that's pretty much what I have to do. 

 

 

@ClatterbustTime + Being med free are what helped regarding pssd. Also like everyone says it improved in windows and waves. I'm probably still in some kind of upward windows and waves trajectory now but I've reached a level where my baseline is good enough that it doesn't bother me anymore. I think I reached this level about 2 years post onset of withdrawals and something like 10-11 months off of prozac. Thanks for your support and encouragement. 

 

Edited November 3, 2020 by ChessieCat
changed member name

[willowboy]

I'm happy to report that I can't remember the last time I had a period of strong brain fog. My output at work this week has been very close to normal and I could probably be pushing myself harder if I really wanted to. Also, one of my main phantom motion complaints I've had so far has been the feeling of "moon walking" while walking and that seems to be either gone or is now very very light. Still not normal while walking but I've been much more comfortable with it the last few days. I've had to race around the office today at work and I know for a fact that simply would not have been possible a few weeks ago. I went to the gym during lunch and was pushing myself with lifting as hard as I have since the onset of this. If I was floating on a raging ocean at the beginning of this it now feels like I'm floating on a pool or a pond.

 

I read the account of this woman @Nadia on this site who experienced literally this exact same thing and it went away for her and she went on a boat again and it didn't reoccur. She has been such an inspiration to me. When people say withdrawal sensitizes your brain they mean it. Doesn't mean life has to change, just need to be more careful. 

 

One thing I've been doing which I think would benefit a lot of people on this site would be to watch youtube video testimonials from folks with some sort of paralysis. Before this bout of landsickness I was not getting the most out of life.Though the worst of my withdrawals was over I was still living as if it had robbed something from me and I wasn't treating the world as my oyster. The dizziness has made me realize just how good I had it! But even with this dizziness, when I hear the testimonials from people with paralysis it makes me realize I am still very lucky! Even though I'm floating through life I'm grateful that I can take a piss on my own, get dressed on my own, feel sexual pleasure, etc. 

 

Time will get me and all of us to where we need to be! Also if anyone is reading this, don't get it twisted I don't feel this positive all the time. But I've got real reason to be hopeful now. 

 

Edited September 27, 2019 by ChessieCat
removed alternative obscenity

[willowboy]

@Gridley Hey Gridley,

 

first off thanks for all that you do. Had a question about a possible reinstatement, wanted to run my history by you and see what you think:

 

5 years of fluoxetine which worked very well for me. Started weaning off because I was doing so well which caused OCD to flare up and made me really focused on my hair loss, which is real but I totally over reacted and took this hair loss pill called finasteride, which sometimes fries people’s nervous systems just like psych drugs, and that happened to me. Once this happened I reupped the fluox to 20mg then following the advice of this site weaned off over the course of 1.5 years. My CNS was still affected after this but I was healing and life was good until I got MDDS from a ferry ride. You might be familiar, it’s the neurological thing where you feel like you’re on a boat even though you’re not. The MDDS never goes away but it gets down to a kind of reasonable level it I can avoid triggers, but that’s often very hard to do. For this reason I was interested in possibly reinstating an SSRI for treatment of the MDDS + the anxiety and depression it causes. Would appreciate any advice!

 

last dose of fluox was 2.5 mg (taper was down from 20) withdrawals began July 2017, last dose of fluox was Jan 2019.

[Gridley]

13 minutes ago, willowboy said:

 

last dose of fluox was 2.5 mg (taper was down from 20) withdrawals began July 2017, last dose of fluox was Jan 2019.

Thanks for providing the fluoxetine information.  I asked because I wanted to see if a reinstatement of fluoxetine might help, but you last dose (Jan. 2019) was too long ago for reinstating fluoxetine.  We're a site for going off psychiatric drugs, so, outside of reinstating the same drug as previously taken to alleviate withdrawal, we don't really make recommendations about other drugs.  That would need to be between you and your doctor.

 

This link on MDDS might contain some helpful information for you.

Dizziness, vertigo, light-headedness, rocking or swaying ...

[ChessieCat]

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4 minutes ago, Gridley said:

I asked because I wanted to see if a reinstatement of fluoxetine might help, but you last dose (Jan. 2019) was too long ago for reinstating fluoxetine.

 

We do have some members who have reinstated a drug after a long time and it has worked.  However there is no knowing for whom it will work and for whom it will not.

 

I will provide the reinstatement information so you can make an informed decision:

 

When reinstating a previously taken drug (and also when starting a different drug, if that is what you decide to do) it is better to start with a small dose to see how you react and increase by small amounts (see Post #1 of the reinstatement topic below).  Please be aware that Prozac / fluoxetine has a very long half life (explained in Post #1 of the Prozac topic below), so it can take some time for the drug to build up in your system.  What this means is that if you take too much it may take 10-14 days before you will know this and then if you reduce the dose you will need to tolerate the "excess drug issues" whilst the dose drops back down in your system.

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Tips for tapering off fluoxetine (Prozac)