[Tim Couch 1999]

I'd like to hear from people who've had chronic DP/DR for 10+ years (8 or 9 is fine too.) I'd like you to list off every kind of treatment method you've tried during your recovery. Please only list things you tried for a minimum of 1 month. Trying something for a few days, or even a week or two, doesn't make the cut for this discussion. Also, please try and be as specific as possible. If you say "healthy eating", describe what your "healthy eating" regimen was like.

I'll go first. I've hardly tried anything. I first got DP/DR in late 2017, but within two months it became very livable, so I didn't have much motivation to fully heal from it. In 2019, I tried hormone replacement therapy, but only for about two months. I didn't really notice much change, but I didn't do it as long as I was supposed to, so in a way I'm hesitant to even say that I tried this at all.

My DP/DR experience changed this past April and is now a chronic, more severe version of the DP/DR I had before. This new experience has been what's motivated me to finally try and take the appropriate steps to get rid of DP/DR altogether (or at least mostly.) From mid April to early June, I tried what I thought was an anti-inflammatory diet. I paired this with regular exercise, 30 minutes of sunlight a day, and a nootropic that reduces brain inflammation. Unfortunately, I stopped doing this protocol because I felt like I was losing too much weight, and it felt like some of the foods I was eating were still causing inflammation. I did not experience much improvement, if any, on this protocol.

This is everything I've tried so far. I have a consultation scheduled in late August with a high profile doctor who practices functional medicine. I'm gonna have him investigate my gut microbiota. Someone on this forum essentially cured their DP/DR by fixing their gut issues using this doctor's protocol.

 

[Chip1021]

I don’t know when my condition started, or if it ever really started, but things got horribly bad in 2004, when I was 20. I’ve tried many, many things to “treat” this. I’ve done many antidepressants (SSRI’s, i can’t remember exactly which ones, but I’ve tried many). I’ve tried stimulants, particularly ADDerall, which helped with focus and attention in school (hyperfocus, essentially) but not much else. I’ve dabbled even with AP’s, atypical AP’s, and benzos, but they didn’t do much and I really didn’t want to get hooked on those anyway. I’ve tried much regular therapy, new age therapy, narrative therapy, hypnotherapy, CBT, DBT, ACT. I was diagnosed with Lyme disease back in 2016 i think, and spent the next 2.5 years on various oral and IV antibiotics as well as a variety of supplements, including high doses of magnesium and vitamin b12. I question that diagnosis (as well as every other diagnosis I’ve received over the years).

Besides the temporary improvement in cognition from ADDerall and some moderate improvement in gastrointestinal symptoms from some aspect of my Lyme treatment, nothing has really gotten to the heart of this “thing” and my condition has gotten progressively worse over the years.

 

[Tim Couch 1999]

I don’t know when my condition started, or if it ever really started, but things got horribly bad in 2004, when I was 20. I’ve tried many, many things to “treat” this. I’ve done many antidepressants (SSRI’s, i can’t remember exactly which ones, but I’ve tried many). I’ve tried stimulants, particularly ADDerall, which helped with focus and attention in school (hyperfocus, essentially) but not much else. I’ve dabbled even with AP’s, atypical AP’s, and benzos, but they didn’t do much and I really didn’t want to get hooked on those anyway. I’ve tried much regular therapy, new age therapy, narrative therapy, hypnotherapy, CBT, DBT, ACT. I was diagnosed with Lyme disease back in 2016 i think, and spent the next 2.5 years on various oral and IV antibiotics as well as a variety of supplements, including high doses of magnesium and vitamin b12. I question that diagnosis (as well as every other diagnosis I’ve received over the years).

Besides the temporary improvement in cognition from ADDerall and some moderate improvement in gastrointestinal symptoms from some aspect of my Lyme treatment, nothing has really gotten to the heart of this “thing” and my condition has gotten progressively worse over the years.

Did you ever try any kind of diet? What about meditation? And when you were "treated" for Lyme disease, what supplements were you put on?

 

[Chip1021]

Did you ever try any kind of diet? What about meditation? And when you were "treated" for Lyme disease, what supplements were you put on?

Ive tried meditation, yes, though it usually only made me worse. Inasmuch as it made me focus on my thoughts (observing my thoughts without judging them), it didn’t seem that focusing on my own thinking was the solution to this. And to the extent that it was focused on my environment (“grounding techniques”), I must admit I just got very frustrated with my inability to sustain attention on my environment. Perhaps it could have worked better if I were to keep at it, but I struggled with that.

Ive also tried changing my diet, though I haven’t done any trademarked “diet” program or anything. The biggest change I made was to get rid of all (or most) drinks other than Ensure and water (with lemon).

As I said, as part of my Lyme protocol I took magnesium and b12 supplements religiously. I also took some vitamin D, probiotics (of course), and many other supplements that I can’t remember and am not going to even try to list here. If you look online for various people’s treatment modalities for Lyme and associated diseases, I pretty much experimented with just about everything, lol. I was never convinced that I had Lyme, but I figured that, if this was Lyme, I might as well go all out with everything I can think of to give me the best shot at recovery. As I said, some aspects of that treatment were helpful for some symptoms, but the neurological problems (which were and are the biggest pain in my ass) didn’t see significant improvement.

 

[leminaseri]

I'd like to hear from people who've had chronic DP/DR for 10+ years (8 or 9 is fine too.) I'd like you to list off every kind of treatment method you've tried during your recovery. Please only list things you tried for a minimum of 1 month. Trying something for a few days, or even a week or two, doesn't make the cut for this discussion. Also, please try and be as specific as possible. If you say "healthy eating", describe what your "healthy eating" regimen was like.

I'll go first. I've hardly tried anything. I first got DP/DR in late 2017, but within two months it became very livable, so I didn't have much motivation to fully heal from it. In 2019, I tried hormone replacement therapy, but only for about two months. I didn't really notice much change, but I didn't do it as long as I was supposed to, so in a way I'm hesitant to even say that I tried this at all.

My DP/DR experience changed this past April and is now a chronic, more severe version of the DP/DR I had before. This new experience has been what's motivated me to finally try and take the appropriate steps to get rid of DP/DR altogether (or at least mostly.) From mid April to early June, I tried what I thought was an anti-inflammatory diet. I paired this with regular exercise, 30 minutes of sunlight a day, and a nootropic that reduces brain inflammation. Unfortunately, I stopped doing this protocol because I felt like I was losing too much weight, and it felt like some of the foods I was eating were still causing inflammation. I did not experience much improvement, if any, on this protocol.

This is everything I've tried so far. I have a consultation scheduled in late August with a high profile doctor who practices functional medicine. I'm gonna have him investigate my gut microbiota. Someone on this forum essentially cured their DP/DR by fixing their gut issues using this doctor's protocol.

according to this forum and many other research i did, if you once recover from dpdr and relapse after a long time with more severe symptoms youre fucked. i have spoken/chatted with 5-6 persons who recovered after 20+ years and all of them didnt do anything specific. they changed themselves to a more authentic person, less toxic. they changed their life to a better one in general. but if you ask me, we need to go the path what brought us to this state in reverse. there is no „cure“.

 

[Tim Couch 1999]

according to this forum and many other research i did, if you once recover from dpdr and relapse after a long time with more severe symptoms youre fucked. i have spoken/chatted with 5-6 persons who recovered after 20+ years and all of them didnt do anything specific. they changed themselves to a more authentic person, less toxic. they changed their life to a better one in general. but if you ask me, we need to go the path what brought us to this state in reverse. there is no „cure“.

Not to be rude, but this thread is supposed to be about what people have tried during recovery, nothing else. And judging by the lack of replies, it looks like most people haven't tried to make serious lifestyle changes (myself included), like I suspected. The majority of posts on here reveal that most people first try medication, then attempt some kind of psychotherapy.

Also, what are you basing your claims about DP/DR on? Are there studies that suggest your second bout of DP/DR will be permanent? I don't see the point in spreading that kind of negativity without being absolutely sure about it. Someone I communicated with had chronic DP/DR for 6 years, and all signs pointed towards it staying chronic unless he did something about it. This was his first bout with it, yet it was chronic. He addressed his neuropsychiatric autoimmune condition, and his DP/DR is basically gone now.

And if that was directed towards me, I would respond by saying I never really recovered from DP. I've always had some level of DP since late 2017, it just wasn't severe most of the time. So this is still technically my first bout of DP/DR.

 

[leminaseri]

Not to be rude, but this thread is supposed to be about what people have tried during recovery, nothing else. And judging by the lack of replies, it looks like most people haven't tried to make serious lifestyle changes (myself included), like I suspected. The majority of posts on here reveal that most people first try medication, then attempt some kind of psychotherapy.

Also, what are you basing your claims about DP/DR on? Are there studies that suggest your second bout of DP/DR will be permanent? I don't see the point in spreading that kind of negativity without being absolutely sure about it. Someone I communicated with had chronic DP/DR for 6 years, and all signs pointed towards it staying chronic unless he did something about it. This was his first bout with it, yet it was chronic. He addressed his neuropsychiatric autoimmune condition, and his DP/DR is basically gone now.

And if that was directed towards me, I would respond by saying I never really recovered from DP. I've always had some level of DP since late 2017, it just wasn't severe most of the time. So this is still technically my first bout of DP/DR.

no it was in general

 

[drew-uk]

"if you once recover from dpdr and relapse after a long time with more severe symptoms you're fucked"

I'm not going to lie this sent a knot to the core of me, I have searched this forum to an inch of its life and have not found many examples of this. Is it specific stories that give you this impression?

Thanks,

Drew

 

[Chip1021]

"if you once recover from dpdr and relapse after a long time with more severe symptoms you're fucked"

I'm not going to lie this sent a knot to the core of me, I have searched this forum to an inch of its life and have not found many examples of this. Is it specific stories that give you this impression?

Thanks,

Drew

I don’t think that this sentiment is profoundly true, but there is an element of validity to it, I think. The longer one has with this condition, the more it “becomes” you, so to speak. Descartes was famous for saying “l’ame pense toujours” (the soul [mind] is always thinking). I interpret this to mean that soul or mind and thought are nearly synonymous. Our sense of our self is a product of a narrative that we construct from our experiences, with an eye toward the future. It can be difficult for someone for whom DPDR has become incorporated into their sense of “self” to conceptualize themselves in a new way. Which isn’t to say it is impossible, of course, but there is a reason why the recovery section sees much more success with those who have had this for a few weeks or months, and less for those who have had it for years on end. Many of us do just learn to accept this as our new “selves.” It can be easier than to keep fighting against it.

Don’t let all this discourage you, though. The pessimistic defeatist mindset you frequently see on this site can be disheartening, but false hope is not necessarily better. People can and do get better. It depends on what is fueling your condition, how long you’ve had it, and what resources you have available to you.

 

[Anders]

Hi.
I have suffered for dp/dr for 10 years now. I am now 30 years old (male).
Long long long story short.
Tried psychotherapi for a start after the first symptoms occured early 2012 - with no real improvements.
Started to exercise a lot which i have continued since then.

The severity of the symptoms has increased ever since 2012 - and in 2019 i decided to go the medication way which has been something I have been against my entire life. But 7 years of increasing dp/dr enough was enough.

Sertraline 8 months - some "improvement" the first few months. In short id say ssris helps to reduce negative thought patterns - But no real changes in symptoms. After 6 months i realised dp/dr was basically as bad as before - Stopped sertraline after 8 months. WIthdrawal period is no fun while having dp/dr on top of the withdrawal symptoms.

Escitalopram - similar to sertralin (ssri) - very activating but this one makes dp/dr worse - whereas sertralin just makes you "not giving a shit" / helps reduce negative thought patterns.

Nortriptylin (TCA) 1 month - no effect.

Lamotrigene 1,5 years (still on it 150mg) - this one has had an effect. On good days id say it can decrease symptoms somewhat 30% - Nevertheless I dont think any medicine can cure dp/dr but i would recommend giving this one a try. I dont think I would have been able to have some sort of "comeback" in my life without lamotrigene. However this one can damage your short term memory and cognitive ability in the long run - which has been the case for me

Bupropion - also recomendable. added this one to lamotrigene january this year - helps on energy and can on good days reduces the feeling of "unreality" by maybe 50-60%. My personaly theory is dp/dr symptoms is more linked to dopamine than serotonin,

Other things that help - yoga, golf, house tasks etc - basically anthing that keeps you in flow and reduces thoughts.

I dont want to be pessimistic - but at least for me - I have come to the conclusion the feeling of unreality og disconnection is something i have to live with. For me - the inability to be fully present socially is what has made the biggest overall impact on my life since dp/dr started when I was 20. I feel the symptoms mostly when in social contexts where I have lost the ability to sence the social athmosfere, laugh and I easily get over stimulated.
I used to have a lot of friends - enjoy parties etc - today 10 years later I have lost most of my relations to friends and family due to this disease basically.

 

[Cray2344]

Anders why did you stop titrating the lamatrogine? Personally for me it had a great effect on the 250 mg range. It is apparentely also synergetic with SSRI.

 

[Anders]

Anders why did you stop titrating the lamatrogine? Personally for me it had a great effect on the 250 mg range. It is apparentely also synergetic with SSRI.

I found that above 200mg i felt weird / hard to explain. And I have unfortunately experienced short term memory issues now after +1,5 years of use - which as I can read - is frigthenly normal on this med. But thanks for the feedback.
What time of day do you take your lamotrigene - and how is your experience with memory and cognition?

 

[Cray2344]

I found that above 200mg i felt weird / hard to explain. And I have unfortunately experienced short term memory issues now after +1,5 years of use - which as I can read - is frigthenly normal on this med. But thanks for the feedback.
What time of day do you take your lamotrigene - and how is your experience with memory and cognition?

I experience short time memory loss, momentarily, for a couple of days when i increase my dose. I take it once at night. Memory and cognition are fine, i mean, i believe i had very severe dp dr where my cognition was really affected. I couldn't think, i couldn't even go into a supermarket and look around and be able to find where something was. So as a result of my reduction in disassociation my cognition has increased, and memory too. When i try to think and i am disassociated i literally cant remember anything. Now it's getting better.

 

[Trith]

About medication, I tried
- sertraline alone (SSRI),
-Lithium (mood regulator). And all the while on lithium, I have tried (in italics) :
- risperidone (antipsychotic) + one month of seresta (benzo)
- amisulpride (antipsychotic)
- zyprexa (antipsychotic), and all the while on zyprexa + lithium I have tried
- zyprexa + 100 mg lamotrigine (mood regulator + ...) + naltrexone 6 mg occasionally
- abilify (antipsychotic)
- haldol (antipsychotic)
- effexor (SSRI)
- ceroplex (SSRI)
- prozac (SSRI)
- lamotrigine
- lamotrigine 300 mg + half dose of ceroplex
- naltrexone 25 mg without anything else

The very first one removed my DPDR but gave me too strong side effects. The last one helped me a little, but gave me too strong side effects.

Other than prescription medication I have tried saint john's wort (plant that possibly works like an SSRI) and some very common probiotics I forgot the name of.

I have also tried many years of regular meditation practice. I have also done other things not with the purpose of getting rid of DPDR but I have heard other people suggest they could help and these things did not help me, like: exercising regularly, from a little to a lot, both cardio and high load, not masturbating and no pornography for periods of up to two years, sleeping more, spending a lot of time with people, living with people, living alone, reduced screen time, psychotherapy, long vacations, eating healthy (which is my standard, but not eating healthy didn't make a difference either).

I don't think the lack of response here means that people necessarily didn't try any serious lifestyle changes. Perhaps people will not respond just because the forum hasn't been very active at all lately, plus there are not so many long time sufferers around.