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My story of cures and relapses, what helped and what didn't.

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#1 TheThing

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Posted 29 March 2020 - 03:14 PM

Hello all,

 

I feel like my story with DPDR is quite unusual, so I feel like it's worth sharing.

 

It all started back in 2014, due to a weed induced panic attack. It was relatively mild back then, things just felt unreal / like in a movie, and I had horrible, debilitating brainfog that actually made work / school very difficult. In fact, most people thought I was plain stupid back then. I went on Prozac in 2015, and within a week the DPDR went away, 100%. People often say getting cured via medication, or being fully cured is impossible, but it was true for me. I had rather severe Anxiety back then however, so it's safe to assume that the DPDR had its roots there. I was prescribed Zyprexa and Risperidone before the Prozac, they didn't help me at all though.

 

I had to learn in 2018 that, for reasons I still don't understand, alcohol binges would be triggers for me. I was anxious again, and back in the DPDR fog. After 8 months of hoping it would just go away again, I tried Prozac again, but this time around it made the DPDR 10x worse. For the first time I also had DP symptoms, felt like an actual observer of myself. It went away after quitting the Prozac after 1 1/2 months though, and suprisingly the DPDR itself also went away after I quit the meds. However, during that time I went through a lot of personal growth, and achieved a lot of the things I always wanted, such as a good group of friends, developing better social skills, attracting women, etc. Pretty sure that had something to do with it.

 

Because I'm a fool, I relapsed into it 3 times during 2019. Each episode felt different, with new / other symptoms I didn't previously have. One time, the episode only lasted 1 week, and went away when I had a nightout with friends. I could literally feel it going away after the first drink, which struck me as extremely strange. Couldn't reproduce this again, but I notice that hangovers would often make the DPDR temporarily go away.

 

The other episodes went away on their own after about 2-3 months each, but I believe that each time, I did something in which I was fully immersed, and just giving these obsessive DPDR thoughts a break was enough for it to go away. One time it was hooking up with a girl, which was the first time back then, another time was when I was at a 3 day long assessment test for a job in the military. Being a military officer was my biggest dream since 2016, so that test was extremely important to me. Because I was in another episode during that time, I was scared shitless that the DPDR would make me fail. But once I was there, I was so hellbent on passing, that I just blocked out the DPDR. After I actually passed, I saw that I could do it despite the DPDR, and it went away for some time again.

 

This was in the last months of 2019, following that it would suddenly creep back up, slowly. Usually every episode was triggered rather spontaneously, not this time. December saw me having another episode, this time not triggered by alcohol, but I believe by stress due to school. Which was rather silly, because I literally just achieved my biggest goal in life, school has absolutely no impact on my life from here on out. Because of this I was in a rather shit mood during that month, and come New Year's Eve I fucked up again and drank a little too much. I instantly knew it would be worse again, and said to myself 'fuck this, I accept it'.

 

I believe my poor brain also said 'fuck this' in that moment, as the episode I have to face since then is the worst one so far. Feelings of unreality, emotional numbness, not even anxiety. No brainfog however, I still do well in school, and continue to be completely functional. It got a little better by now, but usually it went away completely after 3 months. The emotional numbness only got better by maybe 10% since this started.

 

This time around it also comes at the most inopportune time, since I'll be in the military come summer. Meaning, I'll have no more chances to try out medications etc.

 

I'm torn wether I should put it on hold for a year, try out meds, then come at it next year, or just go regardless. I've come to notice that avoiding certain things makes the DPDR worse, while actually doing the things you'd normally do make it better in the long run. But despite being 100% functional, I still want to actually enjoy this life I've worked so hard for. Just 2 years ago, I had exactly 1 friend, poor social skills, not an assertive person. But even when I had DPDR during time, I still tried improving myself and my situation, and despite this condition I did exactly that.

 

So now, 2 years after my resolution, I have a big group of friends, I'm school president for the second time at my school of 400 people, and people generally describe me as 'confident' and being charismatic.

 

I'm not saying this to come across as an arrogant prick, but rather to show you that achieving your goals / dreams is still possible even when suffering from this shitty condition.

 

However, life currently feels like a cosmic joke, because I phyiscally can't enjoy, or be proud of all these things. I should be ecstatic that I'll finally be in my dream job come summer, but nope.

 

I've heard of a promising experimental nootropic called NSI-189 that is said to cure these anhedonic feelings, but obviously that'd just be treating the symptoms and not the root cause. Which brings me to another problem, this time around I don't even know the root cause, since everything is objectively great. Possibly some unconscious anxiety? No clue.

 

Can't try things like Lamictal or Mirtazapine, as that would take too long before I'm in the military.

 

Well. I hope this was atleast insightful, if you want to share any thoughts or advice, I'd be most glad to hear it.



#2 LizFerret

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Posted 05 April 2020 - 02:26 PM

Hi,

From my personal experience all I can say for sure is that dpdr will not go away on its own and require meds and theraphy.
I wish I didnt delay my visit to doc and hoped it would go away on its own.
This condition got worse for me with time making me incapable of doing Some basic things.
From studying in the uni that was in my theard language, working extra and planning for my own business to not being able to work or handle any type of relationships.
I would of course suggest for you continue with your achievements while also taking meds and/or theraphy.
Just wanted to share that this condition did not go away, got worse and eventually ruined my life.
*Currently working on recovering. Year 3 since the start of theraphy.
I wish you to get better and hopefully never have this again. 🙏

#3 TheThing

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Posted 06 April 2020 - 09:49 AM

Hi,

From my personal experience all I can say for sure is that dpdr will not go away on its own and require meds and theraphy.
I wish I didnt delay my visit to doc and hoped it would go away on its own.
This condition got worse for me with time making me incapable of doing Some basic things.
From studying in the uni that was in my theard language, working extra and planning for my own business to not being able to work or handle any type of relationships.
I would of course suggest for you continue with your achievements while also taking meds and/or theraphy.
Just wanted to share that this condition did not go away, got worse and eventually ruined my life.
*Currently working on recovering. Year 3 since the start of theraphy.
I wish you to get better and hopefully never have this again.

Normally I'd agree, but 50% of the time so far, it did go away on its own for me. I was in therapy for 2 years, didn't feel like it helped me at all, it was basically just a place to vent and share my thoughts. Maybe that subconsciously did something, idk. All my therapist did though, was listen, give me some reasurance, relate to me, and that's it. Not once in 2 years did he ever give me some kind of advice on how to handle the DPDR except for "just accept it"

 

All the professionals I saw so far had absolutely no clue on how to help with my DPDR, if they even knew what it was. Most of the time it was me who had to explain it to them, and tell them that there's an ICD Code for this...

 

Meds are very hit and miss with this, most of them just make it worse. Prozac for example literally cured it for me the first time around, made it 10x worse than it ever was when I tried it a second time.

 

I still feel like putting the rest of your life on hold because of this disorder is the wrong way to go about it. Atleast for me, I refuse to let this shit take away one year of my life and delay my career, in hopes of finding some kind of cure.



#4 Aridity

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Posted 06 April 2020 - 11:31 AM

Normally I'd agree, but 50% of the time so far, it did go away on its own for me. I was in therapy for 2 years, didn't feel like it helped me at all, it was basically just a place to vent and share my thoughts. Maybe that subconsciously did something, idk. All my therapist did though, was listen, give me some reasurance, relate to me, and that's it. Not once in 2 years did he ever give me some kind of advice on how to handle the DPDR except for "just accept it"

 

All the professionals I saw so far had absolutely no clue on how to help with my DPDR, if they even knew what it was. Most of the time it was me who had to explain it to them, and tell them that there's an ICD Code for this...

 

Meds are very hit and miss with this, most of them just make it worse. Prozac for example literally cured it for me the first time around, made it 10x worse than it ever was when I tried it a second time.

 

I still feel like putting the rest of your life on hold because of this disorder is the wrong way to go about it. Atleast for me, I refuse to let this shit take away one year of my life and delay my career, in hopes of finding some kind of cure.

I couldn't agree more to everything you just said, I have been in therapy for over a year. I am feeling WAY worse than at the beginning of therapy. And no this is is not because of therapy but it hasn't helped one bit either. It's exactly what you say it is I go in once a week tell how my week went and an hour later I am out of there again. And with medications it's just Russian roulette. I took medication again,and I am in my worst place I have ever been in my life. At this point I am truly hopeless.



#5 TheThing

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Posted 06 April 2020 - 05:35 PM

I couldn't agree more to everything you just said, I have been in therapy for over a year. I am feeling WAY worse than at the beginning of therapy. And no this is is not because of therapy but it hasn't helped one bit either. It's exactly what you say it is I go in once a week tell how my week went and an hour later I am out of there again. And with medications it's just Russian roulette. I took medication again,and I am in my worst place I have ever been in my life. At this point I am truly hopeless.


For what it's worth, meds sometimes just take time to work and make things worse before it gets better (hence all the suicide warnings on SSRIs) but if you keep feeling way worse than before for months, ditch them.

During my 2nd Prozac encounter the DPDR wasn't just worse, I even developed new symptoms I didn't have before, so I was sure that I'm going to be stuck like that forever.

This was always the worst part for me, that feeling of 'will it be like this forever?' even though it went away before... maybe you can relate with that feeling.

If it's just the meds that are making things worse, I promise it doesn't stay like that when you get off them. Yes, there's stories of people saying SSRIs etc. made their DPDR permanently worse, but those cases are very rare.

#6 Aridity

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Posted 07 April 2020 - 03:10 PM

For what it's worth, meds sometimes just take time to work and make things worse before it gets better (hence all the suicide warnings on SSRIs) but if you keep feeling way worse than before for months, ditch them.

During my 2nd Prozac encounter the DPDR wasn't just worse, I even developed new symptoms I didn't have before, so I was sure that I'm going to be stuck like that forever.

This was always the worst part for me, that feeling of 'will it be like this forever?' even though it went away before... maybe you can relate with that feeling.

If it's just the meds that are making things worse, I promise it doesn't stay like that when you get off them. Yes, there's stories of people saying SSRIs etc. made their DPDR permanently worse, but those cases are very rare.

I feel this time it has made me permanetely worse, I was only on it for 4 days but could not continue due to spike in Tinnitus. Which I don't want to increase at all no way. And you're right on that matter yes. For now I am done with meds,especially SSRI's. I want to try Lamotrigine again though.



#7 LizFerret

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Posted 08 April 2020 - 06:27 AM

I couldn't agree more to everything you just said, I have been in therapy for over a year. I am feeling WAY worse than at the beginning of therapy. And no this is is not because of therapy but it hasn't helped one bit either. It's exactly what you say it is I go in once a week tell how my week went and an hour later I am out of there again. And with medications it's just Russian roulette. I took medication again,and I am in my worst place I have ever been in my life. At this point I am truly hopeless.



#8 LizFerret

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Posted 08 April 2020 - 06:33 AM

I can say that therapy by itself didnt do much but meds did. But again it took three (!) month for meds to start working. I tried several different including changing dosages.
I also agree that docs and psycologists no nothing about this condition.
Meds helped me, the right meds though.
Also, rest and trying to figure out what ease my suffering helped.
I have no idea of the externt of your suffering but I feel sad for you feeling this way!
I sencerely wish for you to find ease in This. I hope the suffering will subside.
Do what feel best because you are the only one who knows best!

#9 LizFerret

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Posted 08 April 2020 - 06:34 AM

Normally I'd agree, but 50% of the time so far, it did go away on its own for me. I was in therapy for 2 years, didn't feel like it helped me at all, it was basically just a place to vent and share my thoughts. Maybe that subconsciously did something, idk. All my therapist did though, was listen, give me some reasurance, relate to me, and that's it. Not once in 2 years did he ever give me some kind of advice on how to handle the DPDR except for "just accept it"

All the professionals I saw so far had absolutely no clue on how to help with my DPDR, if they even knew what it was. Most of the time it was me who had to explain it to them, and tell them that there's an ICD Code for this...

Meds are very hit and miss with this, most of them just make it worse. Prozac for example literally cured it for me the first time around, made it 10x worse than it ever was when I tried it a second time.

I still feel like putting the rest of your life on hold because of this disorder is the wrong way to go about it. Atleast for me, I refuse to let this shit take away one year of my life and delay my career, in hopes of finding some kind of cure.



#10 LizFerret

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Posted 08 April 2020 - 06:40 AM

Well, I think you know what to do and what decision to make.
It seems like dpdr is so different for each individual that it is impossible to know what would be the best way to go about it. In this case, you are the expert of your condition. Just take good care of yourself, do what feels best.
I wish you to get better and hopefully leave this condition behind.
Good luck with everything you put your mind into!

#11 LizFerret

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Posted 08 April 2020 - 06:41 AM

I feel this time it has made me permanetely worse, I was only on it for 4 days but could not continue due to spike in Tinnitus. Which I don't want to increase at all no way. And you're right on that matter yes. For now I am done with meds,especially SSRI's. I want to try Lamotrigine again though.



#12 LizFerret

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Posted 08 April 2020 - 06:44 AM

What meds did you take before?
I also had some meds, don't remember the name of all of them, that I have tried once and never again. It's because they gave me such terrible experiences and side effects that I could not handle that.





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