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MDMA Recovery (Stories & Support - 5)

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I too want to look into Lamictal.

My concern is the skin/rash side effects as I have had dry skin/eczema issues in the past. They mostly went away but I do not want to retrigger them at all or have any kind of disfigurement.

http://www.webmd.com/skin-problems-and-treatments/stevens-johnson-syndrome

I am of asian descent and webmd said that theres some gene that increases risk?

@cotcha

Is there a way to test this gene/is it on 23andme? If its on 23andme I wont bother asking my doc but if it isnt I may consider asking my doc to get this tested.

I do not want to risk some horrid reactions considering my apparantly sensitive physiology.

I am pretty good looking (not bragging) but some kind of permanant facial scarring or rash or whatever would really do a number on self esteem. Yet I want to consider this thing for recovery so I can get a full life back.
 
From my shoddy memory the gene is associated with Chinese Han dynasty but you could find more on PubMed, I'll try to search when I get a chance

At the end of the day the real concerns (SJS and TENS) supposedly affect something like 1 in 1300 users, but the issues are dose dependent to a large degree and the risk is avoided by not being on multiple medications (which most epileptic patients are on multiple drugs that increase the plasma concentrations of each other) and tapering up slowly.

The minor skin rashes are more common (something like 1/10?)
 
Cotcha Yankinov said:
From my shoddy memory the gene is associated with Chinese Han dynasty but you could find more on PubMed, I'll try to search when I get a chance

At the end of the day the real concerns (SJS and TENS) supposedly affect something like 1 in 1300 users, but the issues are dose dependent to a large degree and the risk is avoided by not being on multiple medications (which most epileptic patients are on multiple drugs that increase the plasma concentrations of each other) and tapering up slowly.

The minor skin rashes are more common (something like 1/10?)
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But if I understand correctly even the minor skin rashes supposedly docs generally discontinue in order to avoid SJS? I wonder if that gene is associated with the minor skin reactions as well or just the SJS.

If I do go this route I will definitely make sure my doc starts as low as possible and increases slowly to avoid the rash risk. That seems to be something I read as well.
 
I´ve got a proposal for everyone:

we should organize differently in the forum. We should not debate about the things we already know like eat healthy and so on. But we should debate about that:
What medicine could work? What medicine you already tried? What psychopharmaka, what food supplyments, what amino acids? That´s what we should focus on. For clarity I now start a new thread, maybe we also can create a common list/table or something. There is already given some information in this thread, but buried under hundreds of pages...

Because:
We know that most of us do not suffer a clearly relatable disease like depression or shizophrenia. So classical medicine won´t work the same for us. This third point may lead us to a false conclusion: just because we´re no typical patients with a clear medication, it does not mean there is no medicine. In fact, we all have a severe brain damage. Our brain urgently needs medicine. Many users here don´t get that point. Forget 5HTP or orange juice. What we need to try are psychopharmaka. I´m in a medicine-trial-phase now. It may be my only chance.
 
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@socrilus

I think docs tend not to freak out about dermatitis/eczema type rashes but do throw caution to the wind - I'm sure every doc is different, and there could be big differences in how a psychiatrist vs. general practitioner treats that scenario. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201641/

But tapering up slowly is indeed the best way.

I think some of the cases of SJS and TENS are from epileptic patients on high doses of another anti-epileptic like depakote that will really increase the concentration of lamotrigine. And there is also something about the vast majority of rashes occurring in the first 12 weeks or something. Women are overall two times as likely to develop the severe rashes apparently.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2586963/
https://www.ncbi.nlm.nih.gov/m/pubmed/22348435/

HLA-B*1502 is the major risk gene apparently

(With reference to SJS and TENS)
"The authors reported that all 44 (100%) were positive for the HLA-B*1502 allele, while only three (3%) carbamazepine-tolerant and eight (8.6%) normal controls had the allele."
 
martomat said:
we should debate about point 3: What medicine could work? What medicine you already tried? What psychopharmaka, what food supplyments, what amino acids?
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We also have my crackpot theory that it's more to due with cranial nerves/arteries for many people, and thus besides medicines that treat cranial nerve neuralgias (mood stabilizers) there could be physical treatments
 
Hello... I am now a FULLY RECOVERED person. I've been through the same for a very long time. If you all still need help, add me on whats app so we can talk and I can provide you with some information that helped me a lot thru. Also... give a listen to what the user Cotcha has to say. It really makes a difference to have someone to talk with. My number, hit me in whats app guys... +55 11 9 43373981
 
I'm having a serious mdma comedown I'm on month 3 and a half and nothing has improved. I literally can't feel anything. No emotions whatsoever. No happiness, joy, anger, excitement, pleasure... nothing.. I feel like an empty shell of a human with just thoughts... anyone else feel this way and recover ? It is hell everyday.
 
Ihatenotfeeling said:
I'm having a serious mdma comedown I'm on month 3 and a half and nothing has improved. I literally can't feel anything. No emotions whatsoever. No happiness, joy, anger, excitement, pleasure... nothing.. I feel like an empty shell of a human with just thoughts... anyone else feel this way and recover ? It is hell everyday.
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Unfortunately a lot of people get the depersonalization and derealization pretty bad, but recovery just takes time. The right encouragement will certainly speed things along, but most people tend to take a good couple months before they start to feel better, and are often still showing steady improvement after one year.
 
I'm still struggling with the whole mindfulness thing. I just cannot stop obsessing about how many times ill have to do it or how many days until it cures me back to the old me. I know that inherently is 'unmindfulness' but the whole thing is such a massive struggle.

That time component is a MAJOR barrier for me and idk how to get over it. Like what if it takes months on end and maybe ill feel something or whatever.

This summer ie within the next 3 months I want to be 90+% on a consistent daily basis. Whenever it comes to CBT or mindfulness I just get so frustrated about how long its going to take to have any sort of effect and then when I actually did CBT for 8 weeks it had no effect.

I'm curious how/why studies do not discuss frustrations with the psychological therapies/techniques. I cannot possibly be the only one who struggles with this.

Sometimes it actually intensifies the symptoms and makes me feel *more* hopeless. And so i cannot get past even 1-2 weeks of doing it.
 
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socrilus said:
I'm still struggling with the whole mindfulness thing. I just cannot stop obsessing about how many times ill have to do it or how many days until it cures me back to the old me. I know that inherently is 'unmindfulness' but the whole thing is such a massive struggle. That time component is a MAJOR barrier for me and idk how to get over it. Like what if it takes months on end and maybe ill feel something or whatever. This summer ie within the next 3 months I want to be 90+% on a consistent daily basis. Whenever it comes to CBT or mindfulness I just get so frustrated about how long its going to take to have any sort of effect and then when I actually did CBT for 8 weeks it had no effect. I'm curious how/why studies do not discuss frustrations with the psychological therapies/techniques. I cannot possibly be the only one who struggles with this. Sometimes it actually intensifies the symptoms and makes me feel *more* hopeless. And so i cannot get past even 1-2 weeks of doing it.
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This is something I have been guilty of, especially since my relapse but as I started to recover previously, I learnt that this is something you need to let go of. Funnily enough, I started making leaps and bounds when I stopped checking bluelight everyday, carried on with my life despite my problems and stopped remembering how long it had been since I got ill and stopped counting the days. its just something you need to learn to do, you have to learn to let go. This is going to take months...many months. I'm a year and a half in now and I predict that if I ever do get better Im looking at the 5 year mark most likely. At first that scared me but now I've just learnt to accept it for what it is and make the most of the time I have now.
 
If I recall though you never tried medication?

Im seriously considering Lamictal at this point just because the waiting game is too much stress for me itself

Why do you think itll take 5 years though?
 
Ihatenotfeeling said:
5 years ? 1 and a 1/2 years and you don't feel any different ? Omg ?? I'm only on 3 1/2 months
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I don't think he said he feels no different.

I am about the same time frame or so in and the difference is that the horrible emotional numbing is at least not there for me.
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I'm just frustrated that theres all this propaganda about seeking help for a mental illness and then this 'help' ends up being basically accept it/mindfulness/etc all things that do not feel like real 'help' in the first place. Not that these are the *only* things but still at least in the psychological therapy realm.
 
Ihatenotfeeling said:
5 years ? 1 and a 1/2 years and you don't feel any different ? Omg ?? I'm only on 3 1/2 months
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Hey, you need to realize that you're going to be ok. Get that in your head. You're right at the point where the improvements begin to kick in and its going to make you happy man. Just hang in there.
 
Did any of you have insomnia and got over it, if so how and when?
Ten weeks in, i wake up multiple times a night. Sleeping around 4-5 hours max. Drives me nuts.
 
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