HPPD sufferer since may 15th 1992

[jimmyb1]

Hello all I've been a HPPD sufferer since may 15th 1992, yes I remember the date it started, here is my story.

 

I turned 18 on october 1992 I got in with a small group smoking weed and drinking which progressed to other stuff mainly amphetamines, MDMA, poppers, LSD, and anything else I could get my hands on.

This went on for six months or so until I had a bad acid trip in my mates house, I had taken it before but this stuff seemed so strong and I freaked out.

I though nothing of it after, my so called friends took the piss out of me because of it and I just shrugged it of.

 

I carried on using for another month or so but stayed away from acid until at a party I took it again, this trip was very strange thoughts of freaking out again ran through my mind and it was the worst 6 hours of my life. I woke up the next day feeling strange with a sense of nothing is real and that's when it started 

 

I then had a 3 month nightmare of acid flashbacks where I would feel like I was freaking out again, I could not sleep or relax at all and this lasted for about 3 months until it calmed down alot and I was left with.

Eye floaters, sense of nothing is real, visual snow, Anxiety, depression and I still have them today 21 years later.

 

It was 1992 i went to the doctors and they had no idea what was up with me at that time I even went for counselling but because I was not sticking a needle in my arm they seemed not to really care much, so I had zero support, my parents told me it was my own fault and to deal with it myself which I did by getting high again    it seemed like my HPPD went away when I was high mostly on  amphetamines and MDMA, cocaine and alcohol. I did this for another 8 years until I met my partner who saved me from that, sort of.

 

So here I sit I am drug free and have been for 12 years I have 3 beautiful children, and a very supportive partner, but inside I am still a mess and an alcoholic, I think if I'd stopped using drugs in the early days I may have got rid of this all together, but sadly I didn't.

 

The doctors are at a loss with me to be honest nothing works. anti depressants make me feel worse and the last thing I tried was a nightmare(pregabalin)made me feel like I was on E again.

I just wanted to get this off my chest a bit and see if anyone can help me with suggestions for my doctor so he does not have to pick a random drug from his drug book to give me. 

 

Cheers all.

 

Sorry if my grammar is crap.

 

[onedayillsailagain]

Hey jimmyb1, welcome to the forum!

Damn that's even before I was born.. 21 years? Sounds like you had a rough time.. Have you been to a doctor in recent years?
I can't imagine psychiatry being remotely competent in '92, but nowadays new developments have been made in regards to therapies, though it can still be a task to find someone who's willing to try anything to help. Perhaps try seeing another doctor? I know it sucks having to tell your story over and over again, but there's a chance you'll find a doctor who's a bit more in the know-how. Have you seen a neurologist? Have you had any brainscans? Do you have the "official" diagnosis of HPPD? Those are all things that could help you pursue recovery.

Throughout the site you'll find things that have helped people; some have even gone in to full recovery. There's a bit of a spam-wave going through the site right now, but once that's dealt with it should be relatively easy to navigate. There are certain things that have helped people with HPPD.. some drugs are favorable over others. Currently the most popular treatments are Levetiracetam, Lamotrigine, Sinemet, and Clonazepam. The latter I would personally avoid though, but that's ultimately for you to decide. Generally speaking, first and second line anti-depressants have a low efficacy rate in HPPD, whereas indeed some can even worsen symptoms. Selective MAO-B inhibitors (third line anti-depressants) may be something worth looking in to, however generally speaking doctors will be reluctant to prescribe these, moreover they unlikely have access to the more efficacious and newer MAO-B inhibitors such as Rasagiline. Anti-psychotics are something you generally want to avoid, as also these have been reported to worsen symptoms.

It goes without saying that a healthy lifestyle helps, though I must say I have trouble adhering to that myself at times. Considering your alcohol use, B-vitamins and Magnesium are some supplements that might be useful. I use these myself as well, despite not drinking alcohol, and they can help to a marginal extent.
Other than that, many of us are trying new and different therapies, sharing ideas, etc. and generally working towards finding something that can help.
It also depends on what symptoms you have.. Some use Modafinil to improve cognitive issues, and for anxiety other things like Damiana may be more useful.

Personally, my next try is going to be rTMS, which is something you might want to consider yourself, and discuss with your doctor. For me it's the next logical exploration, as I've had transient improvements with tDCS, which is similar, yet weaker in a sense. Though it can be quite expensive, it's a non-pharmaceutical therapy involving non-invasive brain stimulation used and studied for a wide variety of ailments. In any case I suppose it beats trying drugs at random.

Dunno what else to add at the moment, but perhaps it's some food for thought. Feel free to ask any questions, cheers!

[jimmyb1]

Thanks for the reply, I've had no official it's HPPD but I've sort of always know what it was, but I have never said to my doctor! I have come to terms with my visuals and things not being real and the floaters and sky worms as I call them, and I've only been to the doctors with my anxiety and depression. my doctor is old and probably has never heard of HPPD and just seems fruitless to tell him. They also seem not to want to give you anything pill wise any more because it does this or that and you may become an addict blah blah. 

Would love another doctor but sadly I'm stuck here with this guy so where do I go? Some diazepam would be nice, strong ones. As I 'd rather be addicted to something that works than live like this for another 20 years.

[onedayillsailagain]

Well regarding the reluctance to prescribe pharmaceuticals; some are indeed quite addictive and hence are best avoided if possible.
Depending on where you live there might be someone near you or in your country who is more knowledgeable about HPPD. Also.. I don't really understand what you mean by 'stuck with this guy'. If your unsatisfied with your doctor, you can always find another, unless you're located on a small island of sorts of course. You might have to travel a bit further, but ultimately it is your well-being, so it should be worth the extra effort. If anything you could see if he can refer you to a psychologist/psychiatrist to whom you could show the DSM diagnosis of HPPD, then push to get the diagnosis, which would give you more credibility with any further pursuits.

[jimmyb1]

Ok so next week I go to the doctor I have and explain what I think it all is and see what he thinks, if nothing good from that helps then I'll find another doctor and keep pushing for some help. The loss of all confidence over the years has made it difficult to get some help, even talking to a doctor is hard but I'll give it a go. cheers.  

[onedayillsailagain]

I know it's hard, and chances are you'll be met with a lot of misunderstanding and ignorance.. It sucks, I know, but if you follow through you'll find a doc who takes you seriously. Anyway, I copied the DSM diagnosis of HPPD for you to take with you, here it is:

[jls274]

Hey jimmyb! Ive never had much luck with doctors when it came to my HPPD stuff. The first doc i saw for it (and i was bluntly and totally honest about the drugs) looked at me like i had fried my brain and the visuals were a manifestation of chemical imbalances and threw me on paxil and alprazolam. Neither worked well. No med has had any positive effect on me, sabe for tramadol, but like ive said before, it may have all been coincidence that my taking tramadol and my symptom submission took place at basically the same point in time. I dont think meds are the answer, though. I think a huge hurdle is just accepting what has happened, not blaming yourself for past mistakes that got you there, and trying to move forward constantly. When i finally just accepted what happened instead of kicking myself dwelling on it every single second of the day, it all became so much more manageable. My anxiety/depression/detatchment all improved dramatically. The visuals were still strong then, but that can be set aside so long as youre in a good state of mind. Good luck to you, hope everything works out swimmingly for you.

[andrewcb]

Being a alcoholic is not being drug free. A lot of people say alcohol makes it worse or prolongs it. Try giving up drinking, it really takes a toll on you and does effect your brain and body. I would pick up another habit, I use to be a very heavy drinker and just decided to give it a rest, I hardly touch alcohol now, after constantly of no drinking for like 2 months I have really lost the lust for it. I will have a few with my brother or friends once a month twice at most and sometimes wont even drink for a month. Good luck

[nothingbutbluntz]

I would suggest trying meditation maybe?

[Lobotomizer]

Hey jimmyb! Ive never had much luck with doctors when it came to my HPPD stuff. The first doc i saw for it (and i was bluntly and totally honest about the drugs) looked at me like i had fried my brain and the visuals were a manifestation of chemical imbalances and threw me on paxil and alprazolam. Neither worked well. No med has had any positive effect on me, sabe for tramadol, but like ive said before, it may have all been coincidence that my taking tramadol and my symptom submission took place at basically the same point in time. I dont think meds are the answer, though. I think a huge hurdle is just accepting what has happened, not blaming yourself for past mistakes that got you there, and trying to move forward constantly. When i finally just accepted what happened instead of kicking myself dwelling on it every single second of the day, it all became so much more manageable. My anxiety/depression/detatchment all improved dramatically. The visuals were still strong then, but that can be set aside so long as youre in a good state of mind. Good luck to you, hope everything works out swimmingly for you.

This is great advice and pretty much what happened with my HPPD. In fact JimmyB1, do you have any other symptoms besides the eye floaters and worms in regards to abnormal visual activity? Maybe the fact that both of these visual abnormalities occur in sober people with no prior drug use may be of some consulation . Perhaps its your anxiety/depression that's the real issue. Im not saying that your traumatic drug experiences aren't what caused you these long lasting problems, but anxiety itself is a disorder which causes one to over-react, thus worrying about things that may not even be related to the real problem. Its been 20 years since my bad trip as well and it took many years but I did accept and get over it. Once that happened I began to live life like I was never effected. I can feel joy and amusement and love again. The real hurdle, I believe is getting a handle on the anxiety. Did you know that recent scientific studies show that mediation can aid in the growth of grey matter in the brain? It also helps people overcome anxiety and depression, reduce heart rate, blood pressure and much more. Also may I propose to you that scientific evidence does point to the fact that alcohol abuse can cause brain damage which may result in a decreased rate or even interrupt your recovery. Its easy to forget that this crutch can be so detrimental to our mental health. Exercise and meditation, my friend.