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HPPD, my story so far and What has helped.


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Posted

Hi all,

 

Hopefully you find my story and progress helpful. I have been browsing the forum for a while now and feel it is time I give something back to the community. Suggestions are always welcome.

 

Timeline:

 

March 2014

My Drink was spiked with an extremely high dose of a drugs cocktail (blood test 4 days post incident was positive for acid/lsd in small quantity, but likely that another research chemical may have been in the mix) To cut a long story short, I was a high flying entrepreneur with a growing startup. Had 2 drinks on the night of the incident, the second was poured by a rival who felt threatened by my success. CCTV showed him pouring a vial of liquid into my cup. I passed out stone cold, 'tripped' for 8 days straight, threw up for 3 days later getting pneumonia and ending up in a hospital for a week, as a result of the vomit in my lungs. It was horrific. 

 

I spent two months with terrible physical illness, the pneumonia was very severe and my lungs were full of green that would not clear. This was coupled with a mental fog and anxiety. I had to give up my business and put my University education on hold (where it remains..)

 

June 2014

This is when my symptoms began:

White, flashing visual snow 24/7

Everything moving slightly

Persistent headaches everyday

High Blood Pressure and chest tightness

Blocked sinuses post pneumonia

Weakness, severe lethargy

Completely intolerant of light.

Wore sunglasses 24/7.

Depersonalisation

Anxiety/Mental Fog 

 

August 2014

Symptoms worsened. Developed depression.

MRI Scan Brain/Sinuses - Clear, have since had another November also clear.

Eye Tests: 20:20 vision

Started on 50mg SSRI Sertraline / Zoloft - symptoms worsened 20x! particularly visual snow. Doctor said keep on it - lasted 2 months

Everything became far worse. Developed tinnitus, 24/7 Heartbeat in the ear. Lost trust in my GP's guidance.  

 

By October I realised I had to go this alone. I was depressed, anxiety and symptoms were terrible but it was time to give it everything I had. 

 

What has helped?? 

 

Exercise

I've been doing mild exercise (swimming), but hope to push for more in the coming weeks / months. It's very difficult to find the energy and will power to start, but after 1 week of daily light exercise I felt much better.

 

Samento drops (Cats Claw)

Anti-Inflammatory properties, scientific evidence showing its effectiveness for keeping Lymes Disease under control. I take aprox 60 drops per day.

 

Lecithin

An essential fat that makes up a large amount of your brain. Some evidence documenting its use in brain disorders. Makes me feel great.I take one or two 1200mg capsules per day. 

 

Vitamin B12

Vitamin that contributes to normal function of brain and nervous system. I take a high dose 1000ug tablet in the morning for a great energy boost. 

 

Vitamin C

4000mg pure powder per day (2 doses x 2,000mg morning and night). Many Important functions, an anti-oxidant of the highest grade. I love vitamin C. Many new studies showing its significance in the treatment of schizophrenia and other brain disorders. Whilst, this is a high dose and did cause me some flatulence at first - I feel it carries a significant enough benefit to justify that. I highly recommend trying a high dose of pure vitamin C (absorbic acid) for a few days and seeing if you feel any better. 

 

Macuna Pruriens

This has been one of the most significant findings for me. I've been on off dosing with this since December. 2 weeks on, 1 week off.Have tried both powder form (great mixed in with milk) or the tablets from now foods (Dopa Macuna). I take 3 in the morning, 3 in the evening of the capsules.This contains L-Dopa, a treatment for Parkinsons. Increasing dopamine definately helps my snow. In fact on taking a large dose of powder (20g) My snow was completely cleared for several hours. I experience no side effects but I'm cautious as my end goal is always to be supplement and drug free. For the last 2 weeks, I have not taken this supplement because I ran out and the improvements have stayed which is very positive. 

 

Kratom:

Works well in combo with Macuna Pruriens as it allows better absorbsion, acting as a dopa decarboxylase inhibitor. Green tea also works well. Kratom is a mild opiate and extremely relaxing. My favourite strain is White Vein Sumatra. Has no effect on visuals. In my opinion is a far superior and safer alternative to benzos such as valium.

 

Calcium + Magnesium

Many potential benefits. Evidence to show magnesium lowers blood pressure and can reduce anxiety. 

 

Omega Fish Oil High EPA concentration

Scientifically proven effectiveness in the treatment of various brain disorders / depression. Shop around for a supplement containing a higher concentration of EPA, as this is the most beneficial.  

 

Ibruprofen

I take 400mg per day. I know that ibruprofen daily can be a bad idea and harsh on the stomach in particular, but It seems to help with my tinnitus and prevents migraines/headaches. For now it will stay. 

 

Clean diet

Veg and fruit I cook for myself. Make vegetable soups. Thai food. Raw ingredients, low fat and sugar. 

 

Sleep

Been pushing for 8 hours per day. Avoiding the temptation for more as this is just as bad as less in my opinion. 

 

Massage

I get a weekly deep tissue massage. It's a luxury that not everyone could afford. But treat yourself if you can. We are dealing with a difficult set of symptoms and relaxation and relief from muscle tension is very important. Particularly the neck. 

 

Tramadol

If you are feeling low, this could provide a quick boost that helps you lay the foundations for change.  When you are at the bottom its hard to make that first step and plan. Tramadol is a painkiller, opiate, with mild SSRI effects. Personally taking this once a week every sunday when I was feeling my absolute worst, helped me to break free from the negative cycle. Don't take it regularly or things will be a lot worse! 

 

Modafinil

Have used this wakefulness promoting drug at times when I was feeling particularly weak. I don't recommend it for regular use as it can make things a lot worse. But it may provide the energy to kick out of your current routine and be the instigator of change. Recently shown to be effective in depersonalisation disorder. I used it when I had depersonalisation and it was very effective, however it sometimes caused anxiety. At times this lead me to the dreaded stimulant followed by benzo combo (valium). Be cautious. 

 

Meditation

I have had times where I practised meditation upto 4 times a day consistently for weeks. All I can say is give it a try. Mindfulness and meditation certainly can help you relax and come to terms with your condition. Reducing anxiety is one step in the right direction. 

 

Green / White Tea

I love tea. I've shifted away from the black tea I used to drink and now stick to Green and White tea varieties. Antioxidant qualities.  

 

 

Where I’m at now? 

 

-Anxiety has gone.

-Depression has mostly gone.

-Tinnitus only noticeable if I really listen for it or with headphones on.

-Light sensitivity improved, but still there

-Visual snow, improvement! I think about it less than 10 times per day, whereas before it was every second. My vision is smooth and mostly not flickering. Yes there is snow, particularly in low light - but I can be optimistic about the future considering how much better it has got.

-Mental fog is much better. I still wake in the morning feeling awful for the first hour or so, likely due to increased cortisol. I negate this, by recording myself a message for the following morning before I go to bed and preparing my essentials for the next day, thus making the morning easier.

-Depersonalisation has gone

-Less weakness, more energy

 

Migraines:

One last thing. I've always suffered from migraines, but not with any visuals associated. Since the incident, when I suffer a migraine it is very severe if I don't catch it early. I will develop all the worst symptoms I suffered in the summer 24/7: the visual snow becomes 10x worse, pulsating vision, pain, light sensitivity, tinnitus etc. Anyway, unlike when I used to get migraines, I find that I experience a terrible hangover period lasting for about 3 days where the symptoms linger and usually another migraine can follow if I'm not careful. Does anyone else experience migraine hangover in this way? Unfortunately I had one last week. But before that it had been about 2/3 months. So luckily it is not a regular occurrence.

 

Well.. Thats my story. Its been a tough journey. The toughest year of my life. My recovery is about 80% I would say. One thing I haven't touched on is my previous drug history. I had previous experience with LSD back in 2012 and enjoyed it, but had decided I would not do it again. Otherwise prior to the incident, I smoked a lot of weed, sometimes a little cocaine and mdma. Since the incident I have stopped all use, bar the occasional (once a month max) small amount of cocaine. I tried many times to smoke weed but it even now produces a very nasty feeling, I become depressed, anxious, shaky and weak. Perhaps this is some kind of flashback, but all I know is we no longer mix.   

 

Whilst I have not focused on it in the above, the snow is definitely my most debilitating symptom and continues to linger. It’s difficult to define how it has improved, but the difference between now and the summer is night and day. I feel like it has smoothed out now so the dots are less defined and kind of blend in with the surface, therefore are not as disruptive to my sight. Further, I can now focus my eyes, without objects moving. My brain used to throb and genuinely hurt just by focusing with my eyes for a few seconds! 

 

If you have any questions, suggestions or both I'd love to hear from you.

  • 2 months later...
Posted

Hello. Did your daily headaches resolve? I am a migraine sufferer as well. I get classic migraines with aura. I have had hppd for 15 years now. The past 5 or so years have been much better then ever. Minimal focus on any visual symptoms. I had been drug free for 8 years aside from an occasional dabble in coke. I had been drinking throughout all the years with no issues in regards to hppd.

I smoked pot for the first time in 8 years ~4 months ago and haven't been well since. Seems like my visuals have progressively worsened to stronger trails, after images, and mild snow. I now have a new onset of severe light sensitivity and starbursting of headlights. Also, I have a daily headache that comes and goes. It seems to be worsened whenever I look into light.

Wondering what this is all about. Is the headache from the light sensitivity or vice versa? Is this some mild form of migraine? Persisting aura? The headaches are not severe by any means.

Any help is appreciated. I spoke with Dr. A who didn't think the headaches had any direct relationship to the hppd. He thinks it is a manifestation of anxiety/stress.

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