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Bad ecstasy experience -- terrible damage

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Hi, everyone. First, thanks for checking this out and I would love to hear any thoughts on what could be at the bottom of my problems.

15 years ago, I experimented with ecstasy. The 2nd to last time I used it, I had sex on it. I had a very strange reaction upon orgasm. Saw lots of blue flashes in my vision, felt tingling around my body, itchy and weird. Some symptoms lingered, but I tried ecstasy again not long after. Within minutes of ingestion, I felt really weird and anxious. My hands and feet started tingling very strong and curling up like I had poor blood flow. My mood was terrible but was able to calm myself until the tingling settled. The damage was done somewhere in this mix.

Days after I developed chronic hives for the first time from exposure to the sun or heat. I still had annoying tingling in my hands and feet, as well of feelings like things were crawling on me, ringing in the ears, rapid heartrate, and visual disturbances. I went to the doctor about the hives and was put on anti-histamines which only made things worse for me. I broke out in larger welts from all the anti-histamines I tried. Funny thing, is I noticed having alcohol settled my hives and made all my symptoms calm. So, that's how I became an alcoholic.

For years I managed my symptoms with alcohol. Then, it kind of stopped working. I started becoming intolerant to alcohol, getting a cold feeling throughout my body, very pale, fatigued, lots of joint pain. I saw several doctors at that time, no one could really see anything wrong. By off chance, because one of my symptoms was hair loss, I got on the drug finasteride (propecia) and had an amazing result. Within a month I was feeling better than I had in years. My hives werent coming out much, my vision was clearing, I wasn't tired and my hair grew in massively thick.

But, like everything else, that didn't last long, within a year on the drug, I was having side effects, feeling very tired and getting sick multiple times a month. I pulled off the drug and felt better pretty soon, but all my other symptoms started returning and new symptoms I didnt have before -- food intolerance issues, severe anxiety, sinus problems and more. I also tried to prednisone, which worked amazing and cured all my symptoms for 2 weeks, but everything returned maybe worse than before.

Fast forward a couple years and I'm having serious sinus difficulties. I have surgery for a deviated septum which is a disaster, my skin isn't healing properly. The doctors put me on opiate pain medication which I start having a strange reaction to -- felt high anxiety and severe brain fog, but the feeling subsides about 45 minutes after ingestion and I feel good. Anyway, during this period I meet a new girl and have a crazy sex weekend. A couple days later I get very sick. Now, I start having intense visual tracers or trails, blue flashes in vision all the time, constant pressure in the chest, anxiety, lots of pain... all sorts of things.

I don't recover from this. In fact, it's been 5 years. I have made a lot of progress, but am still hindered by whatever the problem is. I can't have sex often because my symptoms get worse after an orgasm. This makes me think there is something androgen/hormone related by the fact that prednisone and finasteride were very helpful for me initially. I also seem to have some issue with chronic dehydration. Epsom salt baths make me very sick, anything that causes dehydration seems to make my symptoms a million times worse.

I feel kind of trapped. Obviously, I've been through the ringer... but I've seen tons of doctors and we have barely gotten a step closer to the cause. I've been upfront about potential drug causes and such, but whenever I bring it up, they just kind of give me a brush off like there's no doctor to see for drug related damage.

I know that ecstasy plays some role in dehydration, and maybe I messed up some mechanism in this area... The androgen thing as well is very intriguing, but I can't get an endocrinologist to work with me on it. So, I'm hoping anyone, someone has some knowledge on what could have happened so I can keep on my journey to recovery.

Thanks for reading..

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I had the same problems with the sun too, and tingling in hands in feet. I have pain problems right now. All over random pain points. I have shaky hands and muscle twitches, I just feel awkward in front of others. Pressure of the chest could be from having a panic attack. I get those, and easily I get told I'm having it. Right now I'm sick, I have a runny nose. I do not know what it is from, and what to do anymore. I understand with the sex and the dehydration though, the more a sufferer exceeds their body to higher levels I bet the HPPD symptoms get worse. 

 

What I'm doing now is watching what I eat and taking vitamins every day. Right now my body does not like meat. I am forced to become a vegetarian, and I feel better because my stomach does too. I suggest you pay attention to what you eat and take vitamins too. Keeping your body in check, is always good. Stretching before sleeping makes sleeping better, study suggests. I have problems sleeping. Stretching eases stress during the day as well. So much tension relief, you will notice it. Help yourself as many ways possible. 

 

Live well,

Amy

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Have you had a blood test for prolactine and testosterone?  If not have these checked (urologist or endocrinologist).  If so, what are the values?

 

E messes with dopamine and serotonin.  And who knows what it was cut with.  E causes dehydration and now you seem stuck with the problem.  Do you have dizziness connected with the dehydration?

 

It is hard to know what the skin problem is about.  But it is noteworthy that the skin and the brain are formed from the same tissues so there are sensitivities shared between the two.

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Also, get a doctor (usually endocrinologist) to do an ACTH challenge test.  Be sure to specifically ask that they also measure androgen and aldosterone.  Often the test is just ACTH and cortisol.

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Have you had a blood test for prolactine and testosterone?  If not have these checked (urologist or endocrinologist).  If so, what are the values?

 

E messes with dopamine and serotonin.  And who knows what it was cut with.  E causes dehydration and now you seem stuck with the problem.  Do you have dizziness connected with the dehydration?

 

It is hard to know what the skin problem is about.  But it is noteworthy that the skin and the brain are formed from the same tissues so there are sensitivities shared between the two.

 

Hey Visual, thanks for the reply.  Yeah, I've been down that road with hormone testing.  Funny thing is, now my LH and testosterone are low.  But, this is after 5 years of dealing with this major flare-up.  At the beginning and middle of this episode, all my hormone levels were normal.  So, I suspect that the recent findings of low hormones has more to do with malnutrition than being primarily correlated with the actual cause.  In that five year span I lost 50 pounds, because foods were provoking terrible reactions.  I was forced to live on a diet of rice, vegetables and soup for nearly four years.

 

I haven't had the ACTH challenge.  Corticosteroids do have a major initial benefit for me -- including the clearing of the skin problems I have.  The problem lies in the rebound effect, once the positive benefits have gone, the symptoms I had before come back even worse than before I took the medication.

 

Thanks for the suggestion though, it might be a good place to look into.

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I had the same problems with the sun too, and tingling in hands in feet. I have pain problems right now. All over random pain points. I have shaky hands and muscle twitches, I just feel awkward in front of others. Pressure of the chest could be from having a panic attack. I get those, and easily I get told I'm having it. Right now I'm sick, I have a runny nose. I do not know what it is from, and what to do anymore. I understand with the sex and the dehydration though, the more a sufferer exceeds their body to higher levels I bet the HPPD symptoms get worse. 

 

What I'm doing now is watching what I eat and taking vitamins every day. Right now my body does not like meat. I am forced to become a vegetarian, and I feel better because my stomach does too. I suggest you pay attention to what you eat and take vitamins too. Keeping your body in check, is always good. Stretching before sleeping makes sleeping better, study suggests. I have problems sleeping. Stretching eases stress during the day as well. So much tension relief, you will notice it. Help yourself as many ways possible. 

 

Live well,

Amy

 

 

Amy,

Sorry to hear you're going through this too.  I hope you can keep it in check before it gets worse.  I'll share with you some more insight that might help as you can see I've been going through this for a very long time.

 

The tingling and numbness is most likely related to the nervous system and chronic muscle tension.  The sympathetic nervous system is working in overload, thereby creating all those effects.  So, you're on point when you talk about stress.  The fight-or-flight response is jacked up beyond control. And the muscle tension creates the pressure around the chest, as well as bronchoconstriction.

For me, adrenergic receptors seem to play a potential role in this.  Because, androgen hormones send a response to the norepinephrine pathway and to the nervous system.  This is my theory as to why drugs like prednisone and finasteride initally affect me in such a positive way.  The problem becomes they cannot remain balanced and the great relief is short-lived.

 

There are other supplements I've tried with great initial effect, and I've tried hundreds; believe me.  If you want to test something out with me, go out and buy some Bilberry Extract.  The brand I got was from Solaray and is 42mg a serving.  I recommend opening the capsule, halving the dose, and resealing it.  If the nervous system is overworking, this supplement should provide great relief to you initially.  However, you could have a rebound effect and your symptoms might come back temporarily worse for a couple days after the supplement has worn off.  That is why I recommend halving the dose to see how you react.

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Besides the meds you mentioned above, what else have you tried?  (Especially anything affecting neurotransmitters)

 

Many HPPDers get relief from Klonopin.  It isn't a cure, just management.  But benzodiazepines work with GABA receptors, a mechanism attributed to alcohol.  Obviously you don't need another addiction, but a trial might help.

 

The skin rebound from pred is after you stop correct?  Pred is too harsh to take continuously.

 

Most antihistamines also have anticholinergic action (Benedryl for example).  If you have a dopamine regulation problem, then one can have issues with anticholinergics.  Dopamine and acetylcholine counterbalance each other in brain systems.  Also, both are involved in the autonomic nervous system.  HPPDers often exhibit ANS problems such as dilated or uneven pupils, or slight changes in heart rhythm, or digestive changes ... and even the skin.  Sex-to-orgasm is a complicated ANS 'dance' and, as you report, there can be problems.

 

While not specifically an anticholinergic, Keppra affects acetylcholine/dopamine/GABA junctions.  A few HPPDers report good results with Keppra.

 

There are two major places where dopamine is made: the VTA in the brain and the adrenals.  Cortisol is epinephrine (adrenaline) and is made from norepinephrine (noradrenaline) and is made from dopamine which is made from levodopa, etc.   [ ... --> levodopa --> dopamine --> norepinephrine --> epinephrine ].  The chemistry is the same in the brain as it is in the adrenals.

 

Also, adrenal hormone production is as follows: androgen --> aldosterone --> cortisol.  Production of these hormones is regulated by the brain.  The CNS signals production with ACTH and monitors blood cortisol.  It cannot regulate the ratios of androgen/aldosterone/cortisol.  That is genetics and metabolism.  If something is wrong with this, one will suffer high androgen but low cortisol and possibly low aldosterone.  The first two are implicated with the meds you respond well with.  Low aldosterone causes salt loss, electrolyte imbalance, and possibly dehydration. 

 

You can research these points.  The most striking disorder is CAH.  You don't have that but perhaps could be a carrier and E messed up things with your good-half.  It probably is less severe than that but it is worth investigating that these systems are functioning correctly.  If you pursue this with a doc, explain what you are after.  E messes with the HPA-axis.  Adrenaline and cortisol are different molecules, but are both made in the adrenal glands and work tightly together, for example forming memories.

 

How do you feel if you eat some salt?

Do you have lowish blood pressure?  (fainting)

 

As posted elsewhere, you can manipulate ANS balance (SNS vs PNS) slightly with Mg, Ca, and K.  However, be very careful with K if you have an adrenal problem!  Presumably your blood tests have been 'normal'.  Borderline adrenal problems affecting aldosterone will have low[ish] Na and elevated K.  In the extreme the heart can no longer beat.  But Mg and Ca are safe.  The citrate forms are quickest, both in and out.

 

As far the prolactin test: low dopamine increases prolactin which lowers testosterone.  However with adrenal problems, high androgen will mask this somewhat.  Then there is total testosterone vs free-testosterone to have checked.  Different topic but related to response to baldness medicine.

 

Lastly, opiates actually increase serotonin slightly.  HPPDers usually do poorly with SSRIs.  However, many tolerate opiates.  I find a slight reduction in vision quality with opates ... and bigger reduction with any serotonin increase.  Typically opiates are helpful for a couple weeks then other problems start so I discontinue.

 

Well, hopefully this info is helpful for you in finding solution for your suffering.

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You might wish to try this:

 

Taurine - 2 grams, twice a day (12 hours apart)  [ do not exceed 4 grams/24 hour or you might get neck spasms ]

Panathetic acid - 1 gram, twice a day (breakfast & lunch)  Also add 1 gram vitamin C with each dose

 

This may facilitate Coenzyme-A and osmo regulation.  Useful for adrenal issues.

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Wow! Great stuff, Visual.  Really appreciate you taking the time to share all your thoughts with me.  I'm going to respond with a lot more information later today.  I just woke up. ;)

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Besides the meds you mentioned above, what else have you tried?  (Especially anything affecting neurotransmitters)

 

Oh, man... I have some of the strangest reactions with supplements and medications.  Most of what I have tried is supplements, but I'm going to list some of the more memorable experiences and reactions I've had.

 

1. Quercetin -- This one boggles me.  My skin becomes clear and translucent on this supplement, to the point that within a day or two, I find my skin to become weaker and break open very easily to light scratches and cause bleeding.

 

2. Licorice Root and Cannabis -- These are the only 2 things I have used that have caused an increase in my visual tracers and light sensitivity.  The effect is usually temporary but very noticeable.  I also get an effect of panic, shaking, tremors, anxiety, hyper-alertness especially when using Licorice root.

 

3. Ashwaganda, Gingko, 5-HTP, -- All this stuff that seems to be touted for adrenals is awful for me.  As soon as I take it, I get the panicky, shaking, tremors stuff with hyper-alertness.  Then once that has worn off, I'm burnt out, depressed and fatigued for days.  I learned early in my trials to avoid this stuff.

 

4. Bilberry, Dandelion Root, Wobenzym -- These are the supplements that have the greatest impact on me.  Initially, practically all my symptoms disappear and the effect lasts at least 24 hours depending on dosage and which one.  I feel relaxed, my muscles aren't tensed, no tingling/numbness, and my mood is incredibly happy.  Then, it wears, and I'm sent into a complete slump.  Generally, I wake up with inflamed or bulging blood vessels all over me.  I have deep tissue or nerve pain that is very sharp, my joints feel like they are shredding each other; stiffness and non-fluidity, I'm depressed and suicidal, and fatigued to the point of giving up.  That's the rebound effect I get.

 

5. Cat's Claw -- This stuff nearly killed me.  I took literally one half of ONE drop in a diluted cup of water.  I got all the tremor stuff I mentioned with the adrenal supplements, and severe mood psychosis that last for about 6 hours.  I was completely out of my mind.

 

6. Zinc -- for some reason this supplement always causes pain in my chest the day after I use it.  A very sharp pain right in the center of my chest.  I think its costochondritis.

 

I can't think of anything else right now, but if I do I will edit and post them later. 

 

 

The skin rebound from pred is after you stop correct?  Pred is too harsh to take continuously.

 

 

Yes and no.  I also get this problem with bleeding from my nose around the septum area when I take Prednisone.  My skin is very good after taking Prednisone for a couple weeks, then it goes back to dry/dehydrated and weak.

 

 

 

How do you feel if you eat some salt?

Do you have lowish blood pressure?  (fainting)

 

Salt is terrible for me.  It seems like it tenses me up.  I get very tired.  I can't urinate.  I'm bloated and pale.

My blood pressure is all over the place.  When I'm having a severe reaction to something (fats are really bad for me) then it seems like my blood pressure takes a dive... But, sometimes its high too.  I have a bigger problems tolerating fats than I do salt.  It doesn't have to be ingested either.  Just putting oil on my skin causing reactions.  This is why I think norepinephrine is involved because it's supposed to be a major player in fat metabolism.

 

As posted elsewhere, you can manipulate ANS balance (SNS vs PNS) slightly with Mg, Ca, and K.  However, be very careful with K if you have an adrenal problem!  Presumably your blood tests have been 'normal'.  Borderline adrenal problems affecting aldosterone will have low[ish] Na and elevated K.  In the extreme the heart can no longer beat.  But Mg and Ca are safe.  The citrate forms are quickest, both in and out.

 

As far the prolactin test: low dopamine increases prolactin which lowers testosterone.  However with adrenal problems, high androgen will mask this somewhat.  Then there is total testosterone vs free-testosterone to have checked.  Different topic but related to response to baldness medicine.

 

While I do get very sick from Espom Salt baths, I dont seem to have too much of an issue with supplementing Mg, Ca or K.  I believe it's my total T that is low in the high 100 range and free is normal.  Another thing to note is at one point my Free Carnitine levels were through the roof high.  That seems to have leveled out over time.

 

 

 

Lastly, opiates actually increase serotonin slightly.  HPPDers usually do poorly with SSRIs.  However, many tolerate opiates.  I find a slight reduction in vision quality with opates ... and bigger reduction with any serotonin increase.  Typically opiates are helpful for a couple weeks then other problems start so I discontinue.

 

Well, hopefully this info is helpful for you in finding solution for your suffering.

 

Yes, I can't tolerate opiates either.  They fill me with anxiety the first 45 minutes and my visual symptoms of tracers and trails gets worse too.

 

Thanks again for all your input.

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At the moment am speechless ... you are very sensitive.

 

In any scale I've seen so far (they vary somewhat between labs), you T is very low.  That will rise if you take a dopamine increasing med.  Your sensitivity is a concern, but low DA can cause a systems to be 'stuck' instead of working smoothly.

 

Quercetin is an anti-inflammatory - which seemed to work for you.  Instead of being a side-effect, could the weak skin be what your skin is actually like now when not inflamed?  (Is it always inflamed).

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At the moment am speechless ... you are very sensitive.

 

In any scale I've seen so far (they vary somewhat between labs), you T is very low.  That will rise if you take a dopamine increasing med.  Your sensitivity is a concern, but low DA can cause a systems to be 'stuck' instead of working smoothly.

 

Quercetin is an anti-inflammatory - which seemed to work for you.  Instead of being a side-effect, could the weak skin be what your skin is actually like now when not inflamed?  (Is it always inflamed).

 

Well, like you mentioned about sensitivity, my diet was so poor and lacked protein for so long, it's no surprise to me that my T went crashing down.  You could be right about the dopamine, but I'm hoping as I get more protein in my diet my T will rise.

 

The quercetin thing is baffling.  It didn't work for me at all.  I don't know how to describe the skin thing other than it is very unusual.  My skin becomes itchy and so weak that it breaks open if I scratch myself on a cardboard box for instance.  It takes days to weeks for it to go back to normal after I get off quercetin.

 

It's worth noting that a food that really bothers me are red apples, and those are supposed to be high in quercetin.  I get very depressed after eating apples lol.

 

I remembered one other supplement side effect.  Pantothenic acid (B5) causes itchy skin and I break out in hives a little.

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