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HPPD/VSS - 6 months in


AUS
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Hi guys,

First post here and after a bit of advice. 

I'll keep it short. Currently 6 months into this horrible condition and still having a lot of trouble trying to live a normal life. Thought I'd share with you my symptoms and routine, open to any suggestions or other ideas that may help as nothing really seems to be helping yet.

Mid 20s, fit, healthy - only ever took mdma (possibly 2cb). As you'll see below it's mainly the mental side of things that are troubling me the most. I've accepted this is my new vision, as shit as it is and ready to just move on with my life and try and be happy again, although this is proving to be a lot easier said than done. 

Symptoms:

- Visual snow, afterimages, floaters, BFEP, no night vision: Very dense visual snow day and night, all I worried about for the first few months but adjusted to this now and don't let it bother me too much. Has not improved at all over 6 months. 

- Tinnitus: only developed last couple of months, loud in a quiet room but I don't let it bother me. 

- DP/DR: Had crippling anxiety for the first 3 months (24/7) from morning to night and experienced constant DP/DR whilst having this anxiety. After the anxiety went away I thought I would get my grip on reality back and this DP/DR feeling would go away. I was wrong, the DP feeling's definitely went away when the physical anxiety did, although I felt that the DR remained. I still feel totally disconnected to the environment and the people around me whilst being completely emotionally flat. After seeing a psychologist that specialised in this, he advised that although I have many symptoms of DP/DR that overlap it is 'just caused by drugs' and is not DP/DR.... I guess this falls under the depression banner? 

- Depression: ever since developing this, have not been able to feel any emotions or enjoy anything that I used to. Everything feels the same, getting up, going to work, playing sport, hanging out with mates. It honestly would not matter if I was doing them or sitting at home staring at the wall for 12 hours it all feels the same. 

- Anxiety: Never really experienced anxiety much before so experiencing crippling anxiety for the first 3 months was hell. Mostly gone now, although I assume I am still very anxious in my mind without the physical symptoms as I have developed severe somatic OCD which is absolutely horrible and possibly been the hardest thing to deal with everyday. The worst thing is there is no medication to take for it to help, as SSRI's are known to exacerbate symptoms in VS. 

- 'Trippy' headspace: Despite all these symptoms, I can't help but notice there is an underlying 'trippy' headspace that just doesn't seem right. I have great difficulty trying to explain this to anyone but it just feels so 'off' and uncomfortable that unless it goes away, I am going to find it very hard to move on with life as much as I am trying!! It's a very spaced out type of feeling. Does this feeling go away and why is it not discussed more often??

- Insomnia: Haven't had a proper night sleep for 6 months, had many sleepless night and when I do sleep I feel like I am dreaming all night which is frustrating. Tried sleep teas, magnesium baths, valerian but nothing seems to work. Some nights I also have bad Restless Leg syndrome which means I can't sleep at all. 

Routine:

After a lot of research I've being sticking to a routine and diet that I believe is best to not only help heal the brain, but restore mental health to be able to move on and try live a happy life with this condition. Been going for the glutamate/GABA balance theory a lot of you have discussed on here. 

Diet:

- Keto (Low carbs, high fat, no sugar, no gluten) 

- No alcohol,  don't smoke 

Supplements:

- Nac

- Fish oil omega 3

- Cod Liver oil 

- Vitamin B complex 

- Magnesium 

- Taurine 

- Probiotic 

- Tumeric 

Nutritionist has got me on these below for 12 weeks for mylien sheath repair? Dunno but giving it a go:

- Lipoic Acid 

- Eye rite (Vitamin A, Lutein, Zeaxanthin) 

Recently stopped taking Lions mane and ashwaghanda as I found they made no difference.  

Exercise:

- Training 5-6 times a week, sport, running, gym - at pretty high intensity 

- Cold showers morn/night 

- Walks, riding, swimming 

Anyways, let me know if anyone else has any suggestions, tips or tweaks to my routine that you think may help. Obviously trying to live as normal life as possible still forcing myself to work, study, be social although all these are extremely hard. 

Thanks

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Welcome and thank you for posting.  It's not always easy to open up about this disorder.

It sounds that you're doing all the right things.  Staying clean, exercise, and watching your diet.

I took a "drug free" approach to dealing with hppd.  When I realized I had a problem it was the 1970s and doctors weren't very receptive.  That being said, some folks in this forum have had some success with medications.  Something to consider.

Over the years I found that I had to discover a set of behaviours that worked for me.  I don't have any real answers, I just know what worked for me.  A daily meditation practice has been life changing.  It took me six months of daily practice to really notice the benefits,  but it helps with mental focus and it helps to shut off the internal mental chatter that can feed depression.  Staying focused and setting goals heled me get through the years.  I think a positive attitude goes a long way as well.  Don't give up, and never give up on yourself.

Also, give yourself some time.  Improvement often does come, but it takes time, so be patient.

A lot of people in this forum have done some amazing things.  This disability doesn't necessarily limit us.  A happy and productive life is certainly possible.

Hang in there, do the best you can, and take care of yourself.

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9 hours ago, MadDoc said:

Welcome and thank you for posting.  It's not always easy to open up about this disorder.

It sounds that you're doing all the right things.  Staying clean, exercise, and watching your diet.

I took a "drug free" approach to dealing with hppd.  When I realized I had a problem it was the 1970s and doctors weren't very receptive.  That being said, some folks in this forum have had some success with medications.  Something to consider.

Over the years I found that I had to discover a set of behaviours that worked for me.  I don't have any real answers, I just know what worked for me.  A daily meditation practice has been life changing.  It took me six months of daily practice to really notice the benefits,  but it helps with mental focus and it helps to shut off the internal mental chatter that can feed depression.  Staying focused and setting goals heled me get through the years.  I think a positive attitude goes a long way as well.  Don't give up, and never give up on yourself.

Also, give yourself some time.  Improvement often does come, but it takes time, so be patient.

A lot of people in this forum have done some amazing things.  This disability doesn't necessarily limit us.  A happy and productive life is certainly possible.

Hang in there, do the best you can, and take care of yourself.

Thanks for the response, meditation is definitely something I’m keen to try. Keen to get to that happy and productive life, just seems incredibly out of reach at the moment with this trippy headspace I’m caught in, but will keep chipping away. Cheers 

Edited by AUS
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That's quite a lot of supplements. Did you start doing all this stuff really early on in your condition, or did you wait a few months? I only ask because I'm wondering if maybe just living a normal life, without going out of your way to ingest supplements and act abnormally in your lifestyle, could possibly be the best way to deal with the condition early on. Perhaps all those supplements are just making things worse, especially as you experience frustration in it not working. I know that's a stupid suggestion, but it's just what came to mind. I don't know how on earth to deal with this stuff.

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