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UPDATE THREAD: Where the hell is everyone and how are you doing?


Kellen

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man these boards are dead. just curious where everyone is at in their recovery. any new meds/supps that are working for you? hows life? its getting to be that shitty time of year for a lot of people i hate the winter with the xmas lights every where and dead grey skies. I'm still getting off the lamictal 30mg. met an amazing girl tho and have halted my withdrawal to try and enjoy life for a bit. i still struggle a lot and my symptoms are still very bad but i have some very good positive things in my life to be thankful for. a much better year than the last for sure.

 

wheres everyone at? i hope you are all safe and on the healing path

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man these boards are dead. just curious where everyone is at in their recovery. any new meds/supps that are working for you? hows life? its getting to be that shitty time of year for a lot of people i hate the winter with the xmas lights every where and dead grey skies. I'm still getting off the lamictal 30mg. met an amazing girl tho and have halted my withdrawal to try and enjoy life for a bit. i still struggle a lot and my symptoms are still very bad but i have some very good positive things in my life to be thankful for. a much better year than the last for sure.

 

wheres everyone at? i hope you are all safe and on the healing path

 

Yah everyone left for some reason.

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No idea why it is so quiet, I guess it is one of those things where people post less articles, so people make less posts and it just gets quieter and quieter.

 

I've been going through a rough time... Out of work with an injured arm (RSI) and might have to change career... Also a friend killed herself. On a positive note, i have found a neurologist here in the uk who has been great... I have been for an EEG and MRI scan, waiting for results... He has also agreed to my continued use of klonopin on a 3-4 days per week basis.

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No idea why it is so quiet, I guess it is one of those things where people post less articles, so people make less posts and it just gets quieter and quieter.

 

I've been going through a rough time... Out of work with an injured arm (RSI) and might have to change career... Also a friend killed herself. On a positive note, i have found a neurologist here in the uk who has been great... I have been for an EEG and MRI scan, waiting for results... He has also agreed to my continued use of klonopin on a 3-4 days per week basis.

 

Hey Jay! Would you be willing to post results of your MRI? Maybe you could screen shot it if they find anything. I've been making a lot of advancement in reading. It turns out that brain tissue doesn't "scar" like most people think but its a glial scar, and really not even a scar at all, in essense it just liquefies the dead tissue/neurons and removes them, leaving a vacant area. Which really is good news because actual fibrin scar tissue would impede any kind of healing. Which means realistically is all we have to do is find something that stimulates neuron replication.

 

I'm pretty certain as well that the issue in cases of HPPD there is a minor, widespread neuronal loss in the areas affected. Primarily the the limbic system, and prefrontal lobes. just check out my thread I posted quite a bit of new stuff.

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I will ask my neuro when I go up to discuss the results (no date yet)

 

I have had an MRI since having hppd, but that was for a head injury, so maybe they were not looking for the right specifics. I expect it to come back clear though.

 

btw - your profile pic always makes me laugh :)

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Hey guys, glad to see some life here again. I've monitored the site for a while but it really died over the last few months. I figured there'd be a lot of people who got HPPD over the summer at festivals and such but I guess not... 

 

Anyway, I agree with dasitmane. I've tried to study up on the brain and even took a brain fog course recently and I think the science tends to point to neurodegeneration in certain parts of the brain. This would explain why it takes so long to heal from HPPD (new neurons don't sprout up overnight), why medication doesn't seem to instantly cure anyone, why we're so sensitive to stimuli (baby neurons are easily overexcited) and so on. Obviously this is just a guess based on what little I understand about the brain, but I think it makes some sense.

 

I've actually realized how big of a role DP has played both in my HPPD episode and in my when I was younger and so I've been lurking around the DP forum for a while now. I've also had quite a bit of success in healing my symptoms through a hardcore healthy lifestyle and even made a post about it recently over there. Heres' the link in case anyone's interested: http://www.dpselfhelp.com/forum/index.php?/topic/57881-how-to-heal-through-natural-health/

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  • 2 weeks later...

Figure I'm about do for an update.. I'm still on Keppra (500mg twice daily) and take Klonopin more often than I'd like (.75mg /day).  The visual aspects are more than manageable, but it's the DP that gets the better of me sometimes.  If I take the Klonopin, life is good.  No idea if the Keppra is doing anything, had some noticeable effects in the beginning but could've been placebo.  No negative side effects, so I'm plan on continuing with it for the time being. 

 

Totally cut out smoking weed and don't seem to notice any long term difference (when I did smoke, I was fine while stoned but DP symptoms definitely flared the day after), still figure it's not worth it and just stopped altogether.  Trying to work on my alcohol consumption - I'm not a heavy drinker, but do probably average 12 drinks a week.  Would like to stop for a while and see if this has any long term effect (plus yes, I know it's not good with Klonopin).

 

Other than that, not too much to report.  I eat healthy and exercise regularly, get plenty of sun, moved in with a girl I've been dating for 1 1/2 years, teach music 5 days a week, read, drink tea, just trying to live healthy and go day to day with this shit.  Almost 6 years and things have gotten a little better. 

 

Here's my generic "life list"...  in addition I plan to taper down on the Klonopin after the holidays (but man, it does make life bearable). 

 

Don't drink coffee

Don't smoke weed

Drink less alcohol

Exercise more

Eat Healthier

Meditate

Read

Write

Practice

Record

Be a good boyfriend

Spend less money

Make more money

Take up watercolor painting

Improve culinary skills

Spend less time on social media

Wear sunscreen

Wear earplugs

 

Anybody out there have any new years resolutions they'd like to share? 

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my new year's resolution is to get a better grip on my drinking.... I'm not gonna quit, as i feel i deserve some fun in my life, but want to try really hard to stop getting drunk to the point where I am blacking out or doing things that i regret.

 

As we all know though, once you have had a few, it becomes hard to stay rational!

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same here as argentino. que pasa bro estoy muy de acuerdo contigo. creo que de alguna forma nos liberamos de lo realmente trivial y... tenemos esa capacidad para valorar y aprovechar lo que realmente importa... siento como si mi inteligencia nunca se hubiese ido :) es una percepcion maravillosa.

 

i think we have a different view of the world. we can focus in real interesting and important things. hppd teach you how bad you can feel and when you beat to manage it you really know how to feel good :) Actually i'm working as chef in a kitchen of a restaurant from my neighborhood. I'm realizing me. I'm earning money.. looking for places to visit. Wanna travel again. Wanna fall in love. I enjoy moments again. The best way for me is do simply and not get anxious for nothing. We are here alives to be good. I smoke daily few cigarrettes, really like it.

 

I suppose all of people who aren't here is doing the same. Living their lives... some need to get out from that board (because they could remember the hell) and some as like me simply read and look sometimes that pages. I'm agree with the buddy who said vs/hppd board of facebook is more easy and active, althoug I would love hppdonline continues always. It's the pioneer page of HPPD.

 

wish you all the best 

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