MDMA Recovery (Stories & Support - 4)

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Silentface

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I didn't really have a structured schedule as I was at such a low point and benzos made me somewhat feel like a normal person. I thought "I'd rather be an addict than live with this condition". Really stupid thought now in retrospective.

The dosage I took was 1 mg Clonazepam once a day/every other day until the DR/DP lifted. I'm guessing I took it for eight weeks. When the DR/DP lifted I naturally felt like I wanted stop the Clonazepam.

I probably were addicted and that's why I switched to Diazepam, as it's seen as a "light" benzo. I did 10 mg two times a day for some time. I stepped down at an easy pace going to 10 mg + 5 mg/day. Then 5 mg + 5 mg/day.

After going down to 5 mg every other day I just stopped. The anxiety raised for a week but the DR/DP/Brain fog were still gone. Now I've been benzo free for three weeks and don't feel any withdrawal symptoms.

I guess I was lucky not having worse withdrawal symptoms. Stepping down at an easy pace was probably essential.

Don't know if I would recommend benzodiazepines to anyone tho. They're highly addictive as you probably understand and it will take a lot of discipline not to get hooked for a long time. Especially for people with this horrible condition. Don't know if you guys will react as good as I did with either.

I reallly wish I could help you more. My first months was so bad that I literally did a list of people I would mention in my suicide note. Routines, socializing and eating ridiculously amounts of food helped me. I luckily had a wonderful girlfriend as well. She really helped me.

Gonna stay sober for another month before trying alcohol/weed. Just to be sure.
 

Silentface

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@Silentface did you have visual symptoms?
I had changes in my perception yes. Halos around objects and people, a lot more "dots" in my visual field than before and after images. The after images beeing the only thing still there.

I don't now how I would describe the dots. They were just everywhere in my visual field and was flying around. Often thought is was mosquitoes flying around.
 

ADubbs

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I have those dots too. Do they zip around your vision when you look away quickly? I have mine all the time, grey floaters.
 

Silentface

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I have those dots too. Do they zip around your vision when you look away quickly? I have mine all the time, grey floaters.
They did, yes. But they have vanished now, at least to the point were I don't think about them at all. Looking up at a clear blue sky tho makes the floaters go crazy.

Does anybody here know if there are connections between DP and phycosis/schizophrenia? A symptom of schizophrenia is disrupt thought patterns which (for me) DP basically is.
 

Silentface

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How long have you had your LTC, ADubbs? Your symptoms reminds me a lot of the ones I had. I also had tinnitus, tingling sensations in my head/face and insomnia. Only had brain zaps the first two months. I think everyone would agree that sleep plays a major roll in getting better. Don't know much about those meds but I would definitely get something to help me sleep better.
 

Cotcha Yankinov

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Does anybody here know if there are connections between DP and phycosis/schizophrenia? A symptom of schizophrenia is disrupt thought patterns which (for me) DP basically is.
DP is present in a lot of mental illness (ie depression/anxiety) but the scrambled thought patterns can come from a variety of sources, such as chronic sleep deprivation (a big cause of psychosis).

I too think that sleep is very important, in particular for the more severe adverse effects sufferers.
 

Scratcher

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I started feeling so much better the past few days. Back to normal... pretty much. But I have a head cold/flu. Last time this happened to me (flu) all my symptoms went away... And then came back. I said I thought it was the medicine the doctors gave me or something but i haven't taken anything this time. I think there has to be an explanation. Has anyone else experienced this ?
 

Cotcha Yankinov

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Interesting. I think its well established that being sick alters neurophysiology in many ways so there are certainly mechanisms in place (ie it doesn't have to be a "now you're just not obsessing over your symptoms" type deal).
 

socrilus

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Interesting. I think its well established that being sick alters neurophysiology in many ways so there are certainly mechanisms in place (ie it doesn't have to be a "now you're just not obsessing over your symptoms" type deal).
Ive always wondered if its some type of acute anti inflammatory effect created by the body to fight it off. If I recall didnt you discuss this not too long ago? I think there are others who notice it as well.
 

Cotcha Yankinov

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I think I talked about the brain under the circumstance of what's known as the "sickness syndrome" when Shugenja was like "Its just because you're thinking about your symptoms less" and so forth.

The microglia/astrocytes, formally thought of as the immune system/housekeeping component of the brain, are increasingly recognized as vital to the function of the brain/neurons. Neuroinflammation is thought to play a role in various neuropsychiatric disease. SSRIs may even work partially through calming neuroinflammation.
 

Amml

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I can't find it now but I read an article that Alpha-lipoic acid was effective in reversing Depersonalisation/Derealisation caused by NMDA-antagonists (Ketamine, MK-801, …)
Anyone with DP/DR tried it?
 

Amml

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Hmm, I think it may have some autoimmune reasons, because when you are infected your immune system concentrates on the pathogen and workes less on other organs like the brain.
 

Scratcher

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Would be good if there was a way to make my immune system concentrate on pathogens permanently then. Injected myself with a non lethal virus or something lol.
 

Amml

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There are a lot anti inflammatory and antioxidant substances in foods or herbs that can reduce overreactions of the immune system. Or try antioxidant supplements.

Btw, found this study: https://www.ncbi.nlm.nih.gov/pubmed/7685472
Read carefully, those monkeys that received 1,25mg/kg orally (would be 80-110mg for a normal human) twice a day for 4 days showed no impairment of the serotogenic system. Only the groups above that amount showed damage. Quite interesting, although most of us got their LTC after "normal" doses of MDMA. So maybe the damage is really more a trauma reaction or something in that direction.

This is also quite interesting, but done with rats and the MDMA was not given orally: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617070/

I would be really interested in studies about former MDMA users that have been treated medically because of their condition or done a lot of sports, etc.
 
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Cotcha Yankinov

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I personally wouldn't suspect that a decrease in symptoms after sickness is due to the immune system focusing on something else, but rather it could be due to the sickness influencing neurophysiology more actively (rather than a passive decrease in symptoms due to decreased immune function of the brain) and then after the active engagement of the immune system there is a normalization of sorts as sickness dissipates. Essentially it could have been like hitting the reset button.

Btw, found this study: https://www.ncbi.nlm.nih.gov/pubmed/7685472
Read carefully, those monkeys that received 1,25mg/kg orally (would be 80-110mg for a normal human) twice a day for 4 days showed no impairment of the serotogenic system. Only the groups above that amount showed damage. Quite interesting, although most of us got their LTC after "normal" doses of MDMA. So maybe the damage is really more a trauma reaction or something in that direction.

This is also quite interesting, but done with rats and the MDMA was not given orally: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617070/
Right, I really don't think that a neurotoxic explanation is necessary when you have non-neurotoxic drugs bringing HPPD-depersonalization and other adverse effects seen in LTCs above-threshold, and you have drug naïve people having these symptoms as well. That doesn't invalidate our experiences, but it does give some insight to the causality of our symptoms, and thus we have more insight into what to do about it.

The interesting thing to examine however is that people that get similar initial adverse effects from different drugs are going to have nuanced outcomes not only from the differences in the mechanism of action of the drug itself, but from the way that they perceive their predicament. Lets just say that we have a pot smoker and an ecstasy taker who got the same set of LTC-esque symptoms (play along). The perceived predicament varies significantly between the two - the ecstasy user probably thinks they'll be like this for the rest of their life because they've fried their serotonin cells and so forth.

The perceived predicament is of course neurobiological (a thought like "I'll never get better" arises out of brain activity, and knowledge of a drug's mechanism of action or society's perception that pot is safe while ecstasy can put holes in your brain or whatever is also based in neural activity) and the drug experience could have shifted the brain activity to be more conducive to OCD type obsessive thoughts, more vulnerable to catastrophizing and so forth. Point in case, SSRIs are used to success in treating OCD.

Even if the shift to a tendency towards obsessive thought patterns is similar from an LSD adverse effects sufferer to an ecstasy adverse effects sufferer, the subject and manifestation of their rumination and the resulting changes in biology could be quite different, including the magnitude of the rumination (because of perceived importance if there is perceived threat of neurotoxicity and permanent "damage").

The human brain is amazingly capable at producing and interpreting abstractly positive or negative thoughts. The ability to think about the suffering of people halfway across the world or to contemplate the possibility of having killed off brain cells with ecstasy is pretty unique to humans. This is probably where we get into a lot of trouble.

Don't get me wrong, thoughts are extremely important to functioning and problem solving, but imagine if your thoughts were played on a loudspeaker for everyone around you to hear. A person walking down the street talking to themselves - they are clearly mentally ill right? But most of us talk to ourselves in our heads all day long. Just how healthy is this for us in particular?

I've gathered previously that many of us were ruminating and prone to over-thinking over-analyzing before our adverse effects, even if we didn't meet the criteria for a mental illness back then. But my argument is essentially that this rumination is throwing wood on the fire. That's not to say that the fire would instantly stop if we didn't throw wood on it, but just how much we are continually thinking to ourselves probably plays a big role in our recovery timeline. It took me a couple years to figure out that all the constant mind chatter wasn't healthy, and it took me some time after that to start to learn how to curb it and stay mindful, and then some time after that I started getting symptom relief.

MDMA has numerous transient effects that disappear in a short while, take for example reduced brain bloodflow for a some weeks and altered receptor homeostasis. Temporary effects like this could cause an increase in the tendency towards rumination that should ideally dissipate after these transient effects have passed, but that's not really how rumination works, and especially rumination combined with slightly more persistent symptoms like HPPD. Chronic rumination causes (or perpetuates) symptoms and then those symptoms cause rumination. I'm sure people will recover given enough time, but things that break the cycle could be instrumental to recovery.
 
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Amml

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I think the hardest part is to get out of that bad thought cycle. It's like everytime I feel a bit bad or empty I think back of how I felt a few months ago and it feels exactly the same, that's the thing that scares me.
And I really think even after 1 years the symptoms must not only be psychological anymore, because I sometimes had extreme balance problems (before the SSRI treatment). I remember once when I was on holidays with my family I could get myself some food at the hotel bar because I couldn't hold balance and orientate, I don't think this was only a psychological symptom.

I also have the theory that SSRI's worked so extremely fast in my case (after 2-3 days) because of the reduced SERT density, which actually means that less substance is needed to bind to the transporters because there are less transporters. When I look at the rat study I mentioned before the full recovery (+ tryptophan hydroxylase) took about 36 weeks. I think the factor for rats to humans is x7, so that would be about 5-6 years in a human to return biologically to baseline. Is that correct?

I know I said that it's maybe not necessary for us because of the not oral route of administration and high dosage and so on, but it shows somehow how the recovery works. And I really think it's not impossible that this damage occurred to some of us, maybe those with only HPPD and no depression or memory problems have another route, I don't know. But in my case I'm very sure my serotonin system was really impaired. You don't get dyskinesia, extreme anhedonia and depression, memory problems, loss of smelling sense and verbal problems just by pure chance after taking ecstasy.

The positive thing is, a lot of my symptoms now got less and I experience happiness in my life again. That's why I'm still positive for full recovery. Wasn't thinking like that half a year ago.
 

Cotcha Yankinov

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And I really think even after 1 years the symptoms must not only be psychological anymore, because I sometimes had extreme balance problems (before the SSRI treatment). I remember once when I was on holidays with my family I could get myself some food at the hotel bar because I couldn't hold balance and orientate, I don't think this was only a psychological symptom.
Certainly, by no means are the thought patterns and messed up biology "psychological" if you will (for example balance issues), but I think that the rumination is one of the factors slowing recovery of the abnormal biology essentially.

I also have the theory that SSRI's worked so extremely fast in my case (after 2-3 days) because of the reduced SERT density, which actually means that less substance is needed to bind to the transporters because there are less transporters. When I look at the rat study I mentioned before the full recovery (+ tryptophan hydroxylase) took about 36 weeks. I think the factor for rats to humans is x7, so that would be about 5-6 years in a human to return biologically to baseline. Is that correct?

I know I said that it's maybe not necessary for us because of the not oral route of administration and high dosage and so on, but it shows somehow how the recovery works. And I really think it's not impossible that this damage occurred to some of us, maybe those with only HPPD and no depression or memory problems have another route, I don't know. But in my case I'm very sure my serotonin system was really impaired. You don't get dyskinesia, extreme anhedonia and depression, memory problems, loss of smelling sense and verbal problems just by pure chance after taking ecstasy.
While reduced serotonin reuptake transporter expression is noted in recent MDMA users (a homeostatic effect that is transient), the interaction this effect has on SSRI response isn't clear to me. There are a lot of factors at play. Humans generally take a few months to return their SERT expression to baseline after MDMA. One confounding issue with translating the animal studies to humans is that while SERT hypoexpression in humans is probably just a completely homeostatic effect, SERT loss in animals can represent nerve terminal loss with the recovery of SERT levels being due to subsequent sprouting. The loss of tryptophan hydroxylase is also difficult to interpret in some of these studies because tryptophan hydroxylase hypoexpression can occur from nerve terminal loss as well as acute effects of MDMA.

But I would expect a difference in timeline of recovery of SERT hypoexpression from species to species if the hypoexpression was just a homeostatic effect.

The exact pattern of reinnervation after nerve terminal loss may not actually matter that much as the overall density of innervation because a lot of serotonergic transmission is non-synaptic volume transmission. Essentially the serotonin is diffusing out of synapses left and right and drifting off to nearby cells. So an SSRI could help make up for a terminal that (for whatever reason) wasn't releasing much serotonin, or if the post-synaptic cell was responding to the normal amount of serotonin that it has always been releasing.

There are also network wide considerations when it comes to an immediate response to an antidepressant, especially when delving outside of the realm of MDD where the beneficial changes are thought to be far downstream of serotonin (and thus take a fair while). Part of the reason in the delayed response there is that the pre-synaptic inhibitory autoreceptors must be desensitized first before serotonin signaling can really increase - who knows what was going on with your autoreceptors.

Maybe you had sensitive enough post-synaptic heteroceptors and desensitized enough autoreceptors to not need a few weeks of SSRI use before serotonin signaling could really increase. If ex-MDMA users have some decreased SERT expression then they could already have desensitized autoreceptors in some cases. Or the autoreceptor activation was beneficial and helped calm some aberrant activity.

In addition, hypoexpression of SERT that occurs during a developmental stage (from having a short allele at 5-HTTLPR or genetic knock-out studies) is going to have different effects on serotonin autoreceptors/heteroreceptors involved with antidepressant response (5-HT1A) than hypoexpression of SERT later in life, so some of us may be abnormal therein as well (people with the short allele are abnormal when it comes to tryptophan depletion and MDMA adverse effects, as well as mental illness after stress).

The positive thing is, a lot of my symptoms now got less and I experience happiness in my life again. That's why I'm still positive for full recovery. Wasn't thinking like that half a year ago.
I hope that this bit of change in thinking is helping, I imagine that a lot of people would begin to feel much better if they were somehow guaranteed they would be completely recovered in 1 year.
 
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