MDMA Recovery (Stories & Support - 2)

[ro4eva]

I wonder if what caused us to end up in this state is biological or mental. I mean, there are lots of studies on MDMA, yet I can't seem to find ONE official report of someone having a 'ltc'. I just wonder if it's like a mentel weakness or something like the brain being structured differently.

EDIT: I mean, we're literally science... If someone was to study the extend of the drug and adverse mental effects, this thread and the people here would be a big gold mine!

Yeah, I've often asked myself the same question. Unfortunately, I have not found an answer yet.

Had it not been made illegal since December '85 (against the advice of a panel of experts appointed by the government to study the drug and offer their opinions on what should be done) by the DEA, perhaps we'd have an answer for such a question by now.

IIRC, after studying the short and long term risks and benefits of the drug, the aforementioned panel of experts recommended to the DEA that MDMA be placed in Schedule III, and no stricter, however, the DEA essentially ignored them and placed it in Schedule I.

For the record, Schedule I substances are supposed to be those which have no known medical benefits whatsoever. So it's rather mind-boggling then as to why mind altering substances such as THC (Cannabis) and MDMA have been placed there.

I'm sorry, my last two posts have been off topic, and so I'll apologize and stop, however, it has become evident that in America, law enforcing bureaucrats and their political overlords are basically ignoring the U.S. Constitution if it inconveniences them and/or their vested interests. Sad story really, but enough about that.

I remain hopeful that we will soon learn just what this so called 'Long Term Comedown' is, and why it occurs to begin with. People can argue that it's all mental, but I'm not 100% certain of that. Again, I'm crossing my fingers that we'll soon get to find out somehow.

 

[herenow14]

I wonder if what caused us to end up in this state is biological or mental. I mean, there are lots of studies on MDMA, yet I can't seem to find ONE official report of someone having a 'ltc'. I just wonder if it's like a mentel weakness or something like the brain being structured differently.

EDIT: I mean, we're literally science... If someone was to study the extend of the drug and adverse mental effects, this thread and the people here would be a big gold mine!

Yes it is a difficult question that no one can answer. For me, grappling with this question has been one of the most futile yet detrimental aspects of my LTC. It doesn't matter, but it would be so nice to have an answer.

I think it's important to point out the obvious -- the MENTAL and the PHYSICAL are obviously linked to one another. For instance, anxiety (mental) can yield so many physical responses.

If I had to take a stand, I'd say that this whole LTC phenomenon largely falls under the MENTAL category (not to disregard the obvious aforementioned ties between physical and mental). I say this because when you do enough research on LTC symptoms, and read about depersonalization in a broader sense, one comes to realize that the symptoms of an LTC can be found with tons of other people going through marijuana induced DP/DR or stress induced DP/DR. The symptoms are the same. Stressing about the long terms effects of MDMA isn't going to help the cause. I think we should find relief in the fact that there are many many people out there going through what we are going through that would not describe this experience as an MDMA induced LTC because their trigger wasn't MDMA. Hence, our battle is more universal and less rare than we would like to believe.

 

[Strangestuff]

The thing is that something physical HAS to get thrown off to cause a random mental illness in somebody who did not have it before. Even in people with non-mdma induced issues, there are physical abnormalities.

Current medicine is not able to detect functional damage. Thats why if you go to a neurologist they will find nothing--neurology deals with organic damage (eg TBI) not functional issues. In fact, in my case, my delayed LTC was shown with tests to have a endocrine root in hypothalmic-pituitary dysfunction.

Some people say this LTC is like "PTSD" but no good dr/therapist would diagnose that. There is absolutely no trauma at all. You are fine one day and then wake up with anxiety essentially.

The best theories have to do with glutamate issues, HPA axis/cortisol dysregulation, neurogenesis impairment, etc. The point is, none of this except the HPA axis stuff is detectable with tests. So unless you have an endocrine abnormality the only solution is to use acceptance based therapies perhaps with psych meds and let your body heal itself.

 

[ro4eva]

The thing is that something physical HAS to get thrown off to cause a random mental illness in somebody who did not have it before. Even in people with non-mdma induced issues, there are physical abnormalities.

Current medicine is not able to detect functional damage. Thats why if you go to a neurologist they will find nothing--neurology deals with organic damage (eg TBI) not functional issues. In fact, in my case, my delayed LTC was shown with tests to have a endocrine root in hypothalmic-pituitary dysfunction.

Some people say this LTC is like "PTSD" but no good dr/therapist would diagnose that. There is absolutely no trauma at all. You are fine one day and then wake up with anxiety essentially.

The best theories have to do with glutamate issues, HPA axis/cortisol dysregulation, neurogenesis impairment, etc. The point is, none of this except the HPA axis stuff is detectable with tests. So unless you have an endocrine abnormality the only solution is to use acceptance based therapies perhaps with psych meds and let your body heal itself.

Interesting post - food for thought in my case for sure.

Although I actually managed to convalesce in 2007 from my 'LTC' symptoms, I find myself having trouble letting go of the past and moving onwards with my life.

I remember very well, all the research and brainstorming I used to do to try and find any clues regarding the possible mechanism(s) by which my 'LTC' symptoms started. For several weeks at a time, I'd be glued to my computer monitor, browsing countless websites and forums in the hope that I'd be able to pinpoint my mystery illness.

In the end, I got nowhere really. Yes, admittedly it was a bit of a learning experience with respect to the study of basic human anatomy, psychotropic drug-based pharmacology (both Rx and 'street drugs'), and bookmarking some solid websites which I could visit again for other issues if need be, but my main objective was not completed. And it sucked. And in order for me to put a lid on this part of my life and move on properly, I can't help but feel that I must continue to keep an eye out for anything which may shed light on what went on (mentally and physically) during my ~19 months spent suffering from 'LTC' symptoms.

Be that as it may however, I'm not nearly as obsessive about finding such an answer since I did mend completely (or at least it has felt that way without the use of any medication). But for the BLers here who are unfortunately dealing with such horrendous symptoms at present, they could surely use a 'magic pill' treatment right about now. And I'm sincerely hopeful they get it sooner than later.

 

[Strangestuff]

See the thing is MDMA is not the only drug out there that can create these symptoms. Some people get into this "LTC like" stuff with prescription meds eg)Accutane, Propecia, list goes on. To take an example---Propecia (Finasteride) supposedly lowers your DHT levels and then people get horrendous anxiety combined with sexual dysfunction. And when they run tests, nothing shows up for most people and those that are lucky find answers in the form of clear hormonal imbalances. However, it turns out that something else must be going on in these Finasteride sufferers who have normal T levels and other hormones--like some enzyme or something somewhere gets messed up and nobody knows what.

Their situation actually is worse than ours. There are far more recovery stories from MDMA LTC's than there are from prescription drugs like Accutane or Propecia. The recovery rate is much higher and it seems that people make tons of progress within months (some even recover in months) and a lot seemed to get cured within a 2 year time frame.

The body is very complex and it is tough to pinpoint a mechanism for what we are going through. Even for me, where the cause of the symptoms has been determined, nobody really knows what the mechanism is. On other forums when I've just browsed the internet casually there are people trying to discern the cause of their post-accutane or post-finasteride symptoms.

People often focus on the brain and something messed up there for the cause of our suffering. But you completely miss all of the other systems:

Nervous system: Neurotransmitters obviously regulate mood in some way.
Endocrine system: Hormones from the thyroid/adrenal/gonadal glands feed into mood and also affect neurotransmitters
GI system: Probiotic bacteria have been shown to play a role in emotional regulation. Also nutrition plays a role in mood
Immune system: Cytokines and inflammation can dysregulate mood
Muscoloskeletal: Pain and anxiety are linked (fibromyalgia, etc)

Really the simplest explanation is that these drugs have disrupted the mind-body connection.

 

[ShortTermExpert]

People often focus on the brain and something messed up there for the cause of our suffering. But you completely miss all of the other systems:

Nervous system: Neurotransmitters obviously regulate mood in some way.
Endocrine system: Hormones from the thyroid/adrenal/gonadal glands feed into mood and also affect neurotransmitters
GI system: Probiotic bacteria have been shown to play a role in emotional regulation. Also nutrition plays a role in mood
Immune system: Cytokines and inflammation can dysregulate mood
Muscoloskeletal: Pain and anxiety are linked (fibromyalgia, etc)

Really the simplest explanation is that these drugs have disrupted the mind-body connection.

This is a good point. It's also quite interesting to note that LTC symptoms are not by any measure universal. For example, some people here have complained of HPPD or "floaters" in vision. I haven't had anything at all like that at any point, yet the anxiety and "brain zaps" others have experienced I have had my fair share of. The cocktail of symptoms people experience do not come from the same recipe.

Now that could be down to things such as dose, individual tolerance, or the resistance of the various body systems to damage. Perhaps it could also be down to the individual adulterants and quality of the MDMA ingested.

All that can be said for certain is that science lags FAR behind a comprehensive understanding of this stuff. The situation isn't helped by foolish and draconian regulation imposed on science by yokels who shouldn't be allowed to man cash registers in supermarkets, let alone make policy.

 

[ro4eva]

See the thing is MDMA is not the only drug out there that can create these symptoms. Some people get into this "LTC like" stuff with prescription meds eg)Accutane, Propecia, list goes on.

Okay - so um, reading this sort of made the hairs on the back of my neck stand up. And the reason for that, is because I was prescribed Accutane back when I was 16. I don't recall using it for very long - perhaps a few weeks? I do remember being told by my doctor that it can damage my liver if I overdo it with the stuff. Does that sound right to you?

I really appreciate you taking the time to discuss this with me; with us - much obliged

 

[Strangestuff]

Okay - so um, reading this sort of made the hairs on the back of my neck stand up. And the reason for that, is because I was prescribed Accutane back when I was 16. I don't recall using it for very long - perhaps a few weeks? I do remember being told by my doctor that it can damage my liver if I overdo it with the stuff. Does that sound right to you?

I really appreciate you taking the time to discuss this with me; with us - much obliged

Lol I dont knkw much about the liver stuff but I do know that accutane has caused severe anxiety and suicidal depression in some users though its considered "rare". You probably got lucky you didnt get it from that cause it wouldve happened while on the drug or shortly after.

The point is--its possible some drug has modified something at who knows what part of your body and then you get "LTC" symptoms. For example, using accutane as an example, you mention liver toxicity. Who knows if somehow it modifies something subtle at the liver and messes up metabolism of hormones subtly and bam anxiety. Idk but that and Vit A toxicity are some theories. It can even cause hypothyroid.

At the end unless you find something concrete like endocrine issues, vitamin/mineral issues, etc then you are just forced to accept it.

 

[ro4eva]

Lol I dont knkw much about the liver stuff but I do know that accutane has caused severe anxiety and suicidal depression in some users though its considered "rare". You probably got lucky you didnt get it from that cause it wouldve happened while on the drug or shortly after.

The point is--its possible some drug has modified something at who knows what part of your body and then you get "LTC" symptoms. For example, using accutane as an example, you mention liver toxicity. Who knows if somehow it modifies something subtle at the liver and messes up metabolism of hormones subtly and bam anxiety. Idk but that and Vit A toxicity are some theories. It can even cause hypothyroid.

At the end unless you find something concrete like endocrine issues, vitamin/mineral issues, etc then you are just forced to accept it.

I see what you mean now.

It's certainly a possibility, given humanity's lack of complete knowledge and/or comprehension regarding how our vital organs function down to the subatomic level. And I contend this is especially true when it comes to the study of the human brain, with its estimated 100,000,000,000 neurons, and between 1,000 to 10,000 synapses for each neuron. The numbers are just staggeringly high, but I digress.

Touché %)

 

[Nerfiel]

Hello everyone, did anyone experience a tough back pain, next to the top of the spine after having a LTC, it started only a week after my "bad trip" so I'm wondering if it's normal or not.

 

[ro4eva]

Hello everyone, did anyone experience a tough back pain, next to the top of the spine after having a LTC, it started only a week after my "bad trip" so I'm wondering if it's normal or not.

Aye, back pain near the cervical region of my spine was a common occurrence - as was on occasion a dull pain at the back of my neck. I remember these two regions of pain during my 'LTC' very well, because they were a colossal pain in the ass to deal with on top of the cognitive dysfunction or 'brain fog' that was simply debilitating for several months in my case.

For me, the ongoing effort to at least temporarily reduce the pain in the aforementioned areas (upper back + back of my neck) were frustrating to say the least, because the usual OTC analgesics such as Acetaminophen/Paracetamol (Tylenol), Acetylsalicylic Acid (Aspirin), Ibuprofen (Advil), and/or Naproxen (Aleve) did not offer any relief. Strangely, Caffeine proved to be more helpful in that regard, as did Codeine, which is available here OTC as 'Tylenol 1 with Codeine' (each caplet containing 300mg Acetaminophen/Paracetamol + 15mg Caffeine + 8mg Codeine).

Two caplets of Tylenol 1 with Codeine every 4 - 6 hours as needed was by far the most effective short term treatment I came across by way of trial and error. However, at the time, I was not aware of the potential physical dependency which can form when repeatedly consuming µ-opioid agonists such as Codeine, Oxycodone, Morphine, Diacetylmorphine (Heroin), and so forth for longer than a couple of weeks or so. I say that because - long story short - I ended up finding out the hard way.

Previously to resorting to the use of the Tylenol 1 with Codeine, I did try to seek medical attention solely for the pain in question, but was swiftly discharged with a prescription for yet another Non-Steroidal Anti-Inflammatory Drug: Toradol (Ketorolac). So in other words, I completely wasted my time trying to get an MD to help me out, but enough about me.

Have a wonderful day

 

[Nerfiel]

Aye, back pain near the cervical region of my spine was a common occurrence - as was on occasion a dull pain at the back of my neck. I remember these two regions of pain during my 'LTC' very well, because they were a colossal pain in the ass to deal with on top of the cognitive dysfunction or 'brain fog' that was simply debilitating for several months in my case.

Thank you for a quick response, can I ask you how much time did you require to "heal" from the back pain? Also I try to avoid taking any kind of pills (except of vitamins of course) at the moment. I can live with the back pain, I jsut need to know how fatal it might be and how much time is required for it to go away.
Also if you know, is there any reason for me to go to a doctor? I have few concerns that it might be my heart causing those pains.
Thank you!

 

[ro4eva]

Thank you for a quick response, can I ask you how much time did you require to "heal" from the back pain? Also I try to avoid taking any kind of pills (except of vitamins of course) at the moment. I can live with the back pain, I jsut need to know how fatal it might be and how much time is required for it to go away.
Also if you know, is there any reason for me to go to a doctor? I have few concerns that it might be my heart causing those pains.
Thank you!

Firstly, you're very welcome

Secondly, it took me ~19 months to completely recover from my 'LTC' symptoms, and ~16 months for the upper back and neck pain to completely subside.

Re. going to the doctor - Depends on whether you feel that you can cope and/or recover from your 'LTC' symptoms without medical attention. I'm sure some people were able to do it - I wasn't though.

Re. your heart - I highly doubt that your heart is the root cause of such pain, but I can't be positive. Perhaps it would be best to seek medical attention in order to discuss this with a cardiologist, who will likely order up a batch of tests including an EKG, Holter Monitor, and stress resistance (among others perhaps).

'Tis annoying, I know. Hope you feel better though.

 

[Strangestuff]

I just learned how to operate an NMR spectrometer

Guess I can test any future pills haha if I really wanted to take it again which I probably won't

 

[nnzo]

Hey ro4eva massive respect for sticking around for your fellow sufferers. Did you have rib pains? my ribs hurt 24/7 it sucks just wonderin'

 

[ro4eva]

Hey ro4eva massive respect for sticking around for your fellow sufferers.

I appreciate your kind words, but to be honest, I have been slacking off of late.

I guess I needed some time away because, even though we may not know each other, it genuinely saddens me to read about new newly reported/posted cases of this so called 'Long Term Comedown.' And this is especially true when the ages of those who register on Bluelight in order to discuss their distress report to us that they're generally under the age of 25 or so. But enough about that.

Did you have rib pains? my ribs hurt 24/7 it sucks just wonderin'

During my time spent on the mend, the first ~6 months were spent identifying all the symptoms which had clearly begun to manifest themselves the morning that the 'LTC' first became apparent. And of those symptoms - which came to about 20 in total - one of them was a dull and sometimes burning-like pain on both sides of my lower ribcage. As time went by however, long story short, I ended up realizing that the aforementioned pain was actually caused by me nearly constantly constricting my thoracic diaphragm, most likely due to high levels of stress, nervousness, fear, anxiety, and occasional panic attacks.

The reason why it took me so long to realize this was because I had been doing it incessantly for so long that it somehow became as autonomous and routine as breathing. And as a consequence, I soon forgot about it. And only after falling ill with food poisoning, did I realize that my body had essentially adapted (for lack of a better term) to it (a constricted or flexed thoracic diaphragm) being the norm.

Thankfully, I was able to teach myself to keep this muscle relaxed, and then noticed sooner afterwards that any pain at/near/around my lower ribcage was gone for good.

I apologize if this isn't any help to you, but that's all the experience I personally have with the pain in question during my 'LTC.'

Could you possibly be suffering from such pain due to damage to the bone and/or cartilage in that area, I wonder. Or, if you're currently taking any prescription medications, is it possible that you're experiencing a side effect (unlikely perhaps, but Rx drugs are infamous for unpredictable short and long term effects).

Whatever the case may be, I hope you get it sorted out, and best wishes.

 

[ScaredFirstTimer]

ro4eva,

Do I remember correctly that you are currently, or have been on, some sort of hormone replacement treatment? Were you on this prior to the ltc, did you start during it, or after? I'm wondering since so many symptoms are pointing to an endocrine issue.

 

[ro4eva]

ro4eva,

Do I remember correctly that you are currently, or have been on, some sort of hormone replacement treatment? Were you on this prior to the ltc, did you start during it, or after? I'm wondering since so many symptoms are pointing to an endocrine issue.

I'm currently on 200mg of Delatestryl (Testosterone Enanthate) which is injected into a muscle (usually my upper left or right arm) once every 2 weeks. I began this treatment in late 2011 after I began to exhibit symptoms of Hypogonadism a couple of months prior to that.

Upon seeing an Endocrinologist, she asked me to go early in the morning (a.s.a.p. after waking up) to the nearest blood lab in order for them to test for the amount of testosterone present. The results shocked me.

According to the aforementioned specialist who referred me to the blood lab, the normal range for someone my age/ethnicity/gender is between 6 and 27 nmo/L - mine... was 1.2 nmo/L.

Once I found that out, it was easy to accept that this is the reason why I had become extremely pale, had no sex drive whatsoever, would sweat easily, was dealing with very dry skin, and many time felt like fainting and had to sit down in order to recover.

Anyways, long story short is that an MRI showed that there's no tumor affecting my pituitary gland, but rather that one or both injuries to my groin area which I sustained while playing hockey and football respectively is at least partially responsible for this. Another reason may be due to the SSRI is was on for ~8 months back in 2006, but if true, then I question why it would take 5 years to manifest itself like this.

After receiving injections, my levels are back in between the range considered normal, and I'll be going from there.

Re. possible connection to 'LTC' - I'm 99% sure it's not related, but I could be wrong. The 5 year period in between (in my opinion) is too long for them to be connected. And I sustained the injuries I mentioned above in 2008 and 2009 respectively. And the latter one was so bad that I couldn't walk at all for 3 days.

 

[Strangestuff]

I'm currently on 200mg of Delatestryl (Testosterone Enanthate) which is injected into a muscle (usually my upper left or right arm) once every 2 weeks. I began this treatment in late 2011 after I began to exhibit symptoms of Hypogonadism a couple of months prior to that.

Upon seeing an Endocrinologist, she asked me to go early in the morning (a.s.a.p. after waking up) to the nearest blood lab in order for them to test for the amount of testosterone present. The results shocked me.

According to the aforementioned specialist who referred me to the blood lab, the normal range for someone my age/ethnicity/gender is between 6 and 27 nmo/L - mine... was 1.2 nmo/L.

Once I found that out, it was easy to accept that this is the reason why I had become extremely pale, had no sex drive whatsoever, would sweat easily, was dealing with very dry skin, and many time felt like fainting and had to sit down in order to recover.

Anyways, long story short is that an MRI showed that there's no tumor affecting my pituitary gland, but rather that one or both injuries to my groin area which I sustained while playing hockey and football respectively is at least partially responsible for this. Another reason may be due to the SSRI is was on for ~8 months back in 2006, but if true, then I question why it would take 5 years to manifest itself like this.

After receiving injections, my levels are back in between the range considered normal, and I'll be going from there.

Re. possible connection to 'LTC' - I'm 99% sure it's not related, but I could be wrong. The 5 year period in between (in my opinion) is too long for them to be connected. And I sustained the injuries I mentioned above in 2008 and 2009 respectively. And the latter one was so bad that I couldn't walk at all for 3 days.

Wow those are insanely low levels--im sure you were basically suicidal with that?

I am not on direct HRT and currently on Clomid which unfortunately is so random for me. It helped a lot in the beginning and then it starts causing all the psychological side effects from estrogen agonism....

Btw scaredfirsttimer, have you gotten tests done for endocrine issues? See the thing is the lab ranges are so wide that most doctors will consider you "normal" even though you could be lowish normal and still have symptoms. Only the good doctors who specialize in hormone replacement only will know this--not your run of the mill typical bad endocrinologist or GP who could care less

For example, in your 20s, a T level in the 400s ng/dL while still "normal" is "low normal" for the age since it should be peaking around 700. If your SHBG is low, your free T would be high but you can still have symptoms sinxe its the bioavailable T that counts for example and most drs wont measure this. Its also important to get the gonadotropin LH/FSH tests. And do a reliable AM blood cortisol draw on the same day as a RELIABLE saliva cortisol test. Most endos will say those tests are inaccurate which is wrong. Go to an HRT dr amd you may get hydrocortisome supplements which will help if low cortisol.

 

[nightElf]

Damn, I had a very rough night, I was not able to sleep much. I took a melatonin capsule, but it did not do much. I want to avoid the Rivotril drop, so I ended up sleeping bad

Does anyone know if the hormone levels can affect the quality of sleep and brain zaps/jerks that I get? I was on my period, and I was sleeping very well, and almost had no jerks/jumps. Now that it's gone, I had a rough night again. Same happened last month. Anyone heard of something like that?