Another long reply
Bitterness?
Um, no.
Bitterness did occur when this began for me 8 months ago.
I was certain I would find all the detail I needed from others that have been through this.
Surely two decades of widespread MDMA use has resulted in hundreds or thousands of stories similar to mine...
I was angry when I discovered only paltry accounts of this process.
It would seem that other survivors of MDMA-induced brain damage lack the ability or the motivation to share their stories in detail.
Either they simply don't care, or they chose to move on with their lives.
Many of them turned their backs on the online community, focusing solely on their own recovery.
I must also point out that not everyone had internet access in the late 90s when MDMA use reached its peak.
That could be a factor.
There are some personal accounts available which indicate recovery does occur, typically around the one year mark.
Too often these stories lack the critical detail desired by those beginning the journey.
It is not enough to simply offer words of comfort, people want to know
why they will recover.
I decided to immerse myself in MDMA research to find the answers I so desperately needed.
Regardless of your opinion of me, I understood quite a bit of it.
Learning a new vocabulary was only the beginning.
Not every study filled with technical terms offers valuable data.
Indeed, many studies provide only the smallest contributions; some are useless.
Others offered great leaps in understanding.
Through my studies I discovered why so many people lack the desire to write with definitive opinions - the nervous system is a vast frontier in medicine, one that we have only begun to explore. Even the most brilliant neurologists understand only a small fraction of what biology has to offer.
Remember that when you feel the need to criticize me for my 'looney tunes material'.
After three months of intensive study I decided to provide to others what I could not find for myself.
After all, what right did I have to hold others in contempt if I was not willing to even try?
So I developed a narrative, one that evolved as I wrote.
I never claimed to be a true expert, but I have positioned myself as a teacher.
I have taken many of the basic findings in MDMA research and translated them into plain English.
While it may lack the level of detail and citations expected in the Advanced forum, it has provided countless ED members with practical and useful advice.
That is, after all, where most of them go.
I have little desire to sit in this forum and discuss receptor types and molecular structures.
With more time invested I would be fully capable.
The
one thread I did contribute to in this forum has finally resulted in some rather arrogant responses and a few insults.
I look past those in search of real objections to the claims I make.
I can find very few.
Sufferers of HPPD are often more desperate for answers than others.
I have been contacted by MORE people because of my old posts on
this thread than
any other on BL.
Out of 200 posts so far, those contained here have introduced me to the greatest number of lost souls.
Think about that...
So what is the function of the Mods in this thread?
I have little doubt that both of you have been great resources over a very long period of time, yet you seem to ignore the value of my contributions.
In fact you hold me in contempt for errors not even related to my narrative.
Allow me to respond to your post:
The lack of epidemiological data on stroke/CBVA among MDMA users is small because severe outcomes from MDMA use are relatively rare.
My narrative asserts that even users who never reach this level of suffering are STILL causing alterations to their 5-HT network, especially from repeated dosing.
However, I strongly believe that the risk of stroke/CBVA goes up
considerably for those suffering from clinically significant anxiety/depression.
The absence of this data does NOT mean the risk is absent.
I have seen several healthcare providers describe this as a shocking phenomena among young people.
Frequent reports of 'brain-zaps' and 'head-pressure' back me up.
Many MDMA users describe these events as violent and frightening, and often occurring for
months.
Regardless of the debate we are having on strokes, the consensus among researchers is that MDMA "re-wires" the brain, permanently.
Although the precise implications of this are still in debate, the language used sounds severe.
Does it not?
Serotonin is known to have a profound effect upon small blood vessels in the brain.
Many MDMA users have been found to have decreased regional blood flow following use.
Occasionally increases are seen - this is considered a hallmark of neurotoxicty.
As serotonin re-innervation occurs, often in abnormal places, capillaries respond.
This process of re-distribution is undoubtedly the source of 'brain-zaps' AND strokes.
Is this still 'driving you up a wall'?
Does the lack of definitive proof really deserve complete dismissal and disrespect?
Look, I understand the need for scientific method.
I appreciate the precision with which most scientists operate, but when science meets biology formulas become impossibly complex.
Neuro-scientists are essentially trying to pry open the smallest micro-circuitry ever invented.
They are playing God.
People suffering from drug use, whether it be cocaine, METH, or MDMA simply do not have the
time to wait on science to reach a full understanding.
The molecules we are putting into our bodies are interacting with our nervous systems in multi-faceted ways.
A perfect understanding is not required to reach helpful conclusions, either.
Having the exact right information laid out in perfect fashion is simply not realistic.
But we CAN draw general conclusions from the data that is available and try our best to piece together the answers.
Like working on a puzzle - you don't have to have all the pieces to see the bigger picture.
That is what I am working on - the bigger picture.
And I
assure you that brain-zaps, head-pressure, re-wiring, and strokes/CBVA are ALL a part of this bigger picture.
For many the effects are negligible and easily ignored, but that does not mean it is non-existent.
For others, there is no doubt.
What. So. Ever.
Moving on...
Yes I sought medical attention, the first time.
I foolishly waited until the next night, when severe symptoms reappeared.
The effects of the first night definitely effected my judgement.
You really can't imagine what its like - the basic ability to speak is interfered with.
After an intense and life-threatening experience I realized that my body temperature was starting to rise.
When this happened my then-limited understanding of MDMA research kicked in and I took immediate measures to lower my temp.
It is a good thing I did.
Looking back I regret not going to the hospital the first night because I suspect serotonin syndrome.
This is a treatable condition under most circumstances, although it is also called 'serotonin toxicity' and may overlap with MDMA 'neurotoxicity'.
When I did go I was NOT given an angiogram, CT, or MRI.
At the time 'head-pressure' was not my greatest complaint, it was severe intestinal cramping and swelling in the upper abdomen.
There was definitely anxiety, tachycardia, and migraine.
I had to ARGUE to receive a goddamn blood test for liver function!
It came back fine, fortunately.
What I learned that night is that drug users that are suffering from anxiety are seen WAY too often to be taken seriously.
If you don't have a fever, MDMA is NOT treated aggressively.
If you want a brain scan you are NOT going to get it in the ER unless it is critical.
The next night a similar cascade of symptoms occurred, although much less pronounced.
I chose to go to a private hospital, which proved somewhat helpful.
Although they did not look at my head at all, they did a sonogram of my liver and gall bladder, along with more blood panels.
They also treated me with respect.
In the end they sent me home with ULCER meds.
![:\](https://bluelight.org/xf/BL_Images/Orig_Emoji/wrygrin.gif "wry grin :\")
So there is my long-winded answer.
I went to two different hospitals, neither of which even cared to search for CNS damage or stroke.
Six months later my second 'stroke' occurred VERY suddenly after smoking some weed.
No, this was not a 'panic attack'.
Yes, panic occurred after...but I was certain a blood vessel popped in my head.
When the weed made my stomach churn the serotonin activity in my brain spiked.
That is my story and I'm sticking to it.
My arm hurt AND felt numb/weak at the same time and there was an intense rushing sensation in my head.
However...
By the time I would have made it to the hospital my symptoms were ALREADY receding.
The treatment for stroke is typically watching the patient.
Anti-platelet meds are used when symptoms do not improve.
The greatest risk to survivors of small strokes is a more severe subsequent stroke.
The treatment for this is low dose Aspirin.
This is what I did, along with lowering my body temperature on the night in question.
Within a few hours ALL sensation and function returned.
The 'serious shit' is hardly treatable.
Exercise is recommended starting the next day as it improves recovery outcomes.
But criticizing me for not seeking medical attention really has NO place in this debate.
It does not invalidate my claims in ANY way.
You are attacking the witness' character rather than his statements...
Going to the hospital can be a HUGE waste of time and money.
Strokes are often undetectable.
Besides, head-pressure is a
constant fixture of daily life.
Learning to cope with it is critical as there is a natural ebb and flow.
Sometimes there is a sudden crescendo and it can take 2 hours to fully recede.
These 'stroke' events are simply a greater, more sudden crescendo...a continuation on the spectrum that is recovery. Would you have every person suffering a 'brain-zap' run to the ER?
I am not 'moping' in my chair, seiko.
Regardless of how 'subjective' you find my claim to be, I DO have evidence backing me up.
I am extremely confident that this happened and I have EVERY right to post it, even without 'confirmation'.
To me, the question is why do some people find these claims SO hard to believe?
Why is the first reaction always to DOUBT?
And criticize?
MDMA is not
presumed innocent until found gulity.
There is plenty of evidence for guilt -
plenty.
Consider this -
If 're-wiring' is the agreed-upon language and disruptions in blood distribution HAVE been documented in MDMA research, maybe small strokes are
part of the recovery process.
Maybe they are MEANT to happen.
This is what I believe.
Now call this 'magical thinking'.
I am not a hypochondriac.
I never had ANY of the tendencies before this, and I don't have them now.
I am highly analytical but I take my time before reaching conclusions.
While I don't consider all of my conclusions to be 100% spot on, I do believe that I am seeing more of the bigger picture than some of the more detail-oriented members on this site.
I also have a knack for writing.
Yes, I strongly suspect the process of digestion is the cause of BOTH of my strokes.
There IS logic here if you care to see it.
Stroke is the THIRD largest killer in the US.
Diet is OFTEN a suspected cause, although salt content has not had enough evidence to support it.
Aside from strokes, there is evidence that the intestines play an
unprecedented role in the aging process itself.
Research in animal models suggest that
calorie restriction begun shortly after puberty is a reliable way to extend lifespan!
If you spend some time reading through the statements made by centenarians you will frequently find claims that eating small meals is a major factor.
They often state that pushing away from the table BEFORE you are full is the single most effective habit that aided them in a long life.
Some of these statements may be too 'subjective' for this forum, yet their truth is hard to argue with.
Here is a more technical explanation for my stroke theory:
Intestinal motility causes an increase in serotonin activity in the brain-stem.
If 5-HT receptor activation occurs too abruptly, cerebro-vascular damage can occur.
Is that advanced enough?
I know statements like this may look like 'swagger' but I assure you no 'bitterness' is intended here.
One of the shortcomings of the written word is that it lacks the precision of tone found in speech.
Sure, you can assign a defensive posture and a condescending tone to me, but let it stop there.
This is intended as a debate, offered for the public benefit.
I respect both mods here for their above-average knowledge and intelligence.
I doubt either of you will take any offense.
But you must understand that I cannot allow my hard-earned understanding of MDMA toxicity to be undermined and my very character to be
assassinated in the thread that has brought me more 'lost souls' than any other.
My theories and claims DO contain logic.
I will not deny a measure of madness - my brain is being 're-wired'.
But there is method and sound judgement as well.
I was just as condescending and prone to rhetoric before this happened to me.
But I am not immune to mistakes.
They are, after all, the greatest source of learning.
In the end, I hope all of this debate augments my knowledge and refines my approach.
Right now I am reading more about the nervous system, in line with your recommendation.
At the moment I am focusing on glial cells, otherwise known as HALF of the BRAIN.
These abundant cells were historically over-looked and under-estimated.
Their very label means 'glue'.
They were thought to be nothing more than 'packing material' for the neurons that they surround.
I have even included a rather bold claim in my narrative on glial cells that I found in research: 'The process of gliosis, which is formation of scar tissue in the brain, is not typically found in MDMA injury.'
The division of glial cells cannot be simply called 'scar tissue', but it does appear to be a major roadblock to recovery in MANY types of brain damage.
The absence of this roadblock in MDMA damage may be critical, but this does not preclude the possibility of
other types of glial response.
For example, blood disruptions in MDMA users eventually return to normal, even though serotonin re-innervation is known to remain abnormal.
How can this occur? Perhaps glial cells hold the answer.
Although they do not relay electrical information like neurons, glial cells DO transmit messages via calcium ions, as well as others.
They can sense neuronal activity and they even have MOST of the receptors for neurotransmitters on their cellular surface.
These cells are a VAST and unexplored terrain in neuroscience.
They are expected to reveal some very BASIC truths about how the brain functions.
Perhaps one day I will return with more sweeping and magical opinions to share.
:D
For those who read this very long post, thanks for your time.
Same thing goes for the mods and their thoughtful replies.
Until next time...
