Do I bother taking part in a clinical study if the treatment most likely won’t resolve the issues I desperately want fixed?

[bellaisdonewithlife]

29F. I'm thinking about flying down to the States for probably around 2 months to take part in a brain study in a top clinic in this area of research. On one hand they might be able to help me with some of my brain issues and my quality of life could improve to a degree, but on the other hand I have some worse issues that seem to be genetic, ones I've had my whole life even as a child, that they probably can't do anything about. I even struggled to eat food I really like today. I have no dopamine or pleasure from anything and shit it was hard to even eat a favourite food of mine. What kind of life is this. Ugh.

 

[Slark]

Have you tried methylphenidate medication? It won't solve all your problems, but it might help with dopamine. I recently started taking it and it's helping, but as I said, it doesn't solve everything. I still want to kill myself.

 

[bellaisdonewithlife]

Have you tried methylphenidate medication? It won't solve all your problems, but it might help with dopamine. I recently started taking it and it's helping, but as I said, it doesn't solve everything. I still want to kill myself.

No, I tried other serotonin meds and dopamine meds from that one, but they all gave me severe insomnia and I had to cut them right away. The only one I lasted a month on is Wellbutrin, but it didn't make any difference for me.

I feel like my pleasure circuit is non-existent. I just have so many problems from anhedonia to emotional numbness to no interest in anything human to what may be considered severe dissociation. Nothing has ever worked. I'm so damn stuck.

The Canadian medical system failed me hard for years. I doubt other countries would help me much more, but at least in clinics like that one in the US they are making breakthroughs over time and discovering some new treatments. It might be worth trying before throwing in the towel.

 

[ovaltinee99]

A clinical study has its own goals and if you go in thinking it will solve your issues, you might just get disappointed. However they can help depending on what kind of study it is - by giving you information about your brain or by letting you try treatment that is not available to the wider public.

 

[bellaisdonewithlife]

A clinical study has its own goals and if you go in thinking it will solve your issues, you might just get disappointed. However they can help depending on what kind of study it is - by giving you information about your brain or by letting you try treatment that is not available to the wider public.

I don't think it'll help much. I think I'll be lucky to have improvement in some symptoms and yes I may also find out some info about my brain. Some things I'm stuck with. And those are the things I desperately wish I could change out of everything.

 

[rainy.tears]

what is the clinical study? would it be a treatment for the anhedonia?

 

[bellaisdonewithlife]

what is the clinical study? would it be a treatment for the anhedonia?

Yes, but I'm still waiting to figure out what exactly they are trialing right now and when the start date is. They just did a trial I would've been really interested in because I think it would've been a great fit for me based on the other issues I have. Of course I freaking missed it.

 

[rainy.tears]

Yes, but I'm still waiting to figure out what exactly they are trialing right now and when the start date is. They just did a trial I would've been really interested in because I think it would've been a great fit for me based on the other issues I have. Of course I freaking missed it.

What was the substance in the last trial? I really hope it works out for you, anhedonia is a living hell :(

 

[Forveleth]

As a science person I always encourage people to participate in studies if they can. More participants = more data = (hopefully) better data.

 

[bellaisdonewithlife]

As a science person I always encourage people to participate in studies if they can. More participants = more data = (hopefully) better data.

Yeah I understand that. It's just that I'm 29 now and I've basically given up hope that anything will help this lifelong anhedonia, emotional numbness, and other brain issues plus my autoimmune-like illness. I don't think there's a single cure on this planet that will help me. I think that if your brain develops the way mine has you're just screwed for life.

Add in my bad fear of flying I developed a few or so years ago and suddenly it's like taking myself out is a lot more enticing than taking a plane for several hours, getting to the clinic probably 5 times a week for 2 months, then taking a plane back here. I would think about paying more to just rent a car and drive all the way there over a few days.