Non-Drug related HPPD

[rachel]

Found this forum online am very much hoping to learn from people who have had non drug related early childhood onset hppd (no history of drug use either psychedelic /presceiption/other) childhood. My earrliest recollections or the distortion were during pre adolescence. I only recall being anxious of these symptoms at night after dark as I would ask to sleep with my parents because I was seeing dots, or the air was moving, etc. Other than that, the visual abnormalities were mostly ignored except when used as distraction, etc. I never fully knew I was seeing things differently than everyone else, ans of course there is the risk of sounding psychotic as Im sure many here relate when trying to describe this. I did suffer anxiety disorders in early childhood including a rather aggressive OCD that began to subside post puberty. Additionally, ADHD that didn't subside even through adulthood, and depressive symptoms in adulthood.

This year I sought medical treatment for depression and ADD symptoms which have both never been treated (either by CBT/medication) till now. I am concerned about taking drugs if they will aggregate HPPD, as among which I was prescribed was an an anti-psychotic drug respiridone (as an off label treatment for ADHD with additional disorder and depression). What lead me to this site is that it online I read this drug had made HPPD symptoms worse in patients. I didnt mention to my dr the hppd (honestly its not something that i even think about), but i am worried in that after taking the migrain medication topomax 6 years ago (which is also off lable from its primary use as an antiepileptic), I now suffer from percent and very persistent and aggressive tinnitus (constant ringing of the ears) which does bother me emmensely. I am concerned if non drug induced HPPD individuals might be hyper sensitive to side effects to medication (particularly worsening symptoms of hppd and auditory tinnitus which was not present previously). I also mention this as the rare possible side efdect of respiridone was permanent neurological imapirment (something like terret spasm parkensins or something... horrifying. Prior to now, I had never used any prescription medication (even as a child for neither the ADHD or OCD). However now in adulthood as I may be using them (my dr gave me prescriptions for ADD- I just haven't filled them), it has proven problematic, as although I do want treatment I am fearful of side effects including the worsening of visual snow, tinnitus, and especially the potentially dangerous ones I worry I might be more susceptible to considering both my history with the tinitus side effect and the lifelong HPPD already present. I worry this sensitivity might make me prone in sone way.

Im hoping to learn more from non drug caused HPPD people here, particularly whom may have struggled with it as a child, and if anyone knows from experience/other insight if there are higher risks to side effects. Thank you.

[yellowskies]

What you have is Visual Snow and not HPPD... but is almost the same. But when you say you doctor you have visual snow he will be maybe more "good" to you and dont judge you for taking drugs (that actually you never did) This happened to me... Anyway look for HPPD works Benzodiazepines (but are pretty adictive) and some anticonvulsives just like Keppra or Lamictal. What makes hppd worst is Antipsychotics just like Risperidone. Antidepressives just like SSRI'S (Sertraline, Prozac, Paxil) make that your symptoms flare up but just ik the begining of treatmente then they get back to baseline. This is all I know since I had HPPD and did read a lot of forums and groups and official information too. Hope it helps!

[rachel]

Thanks so much for this insight. I really appreciate it. I will be sure to refer to it as visual snow rather than hppd, though I'm still hesitant to discuss it at all with my dr being as how the symptoms (if not fully understood in correlation to the disorder itself- which there is so little information on, particularly for non drug related cases) might seem like a psychosis in and of itself. I don't suffer from psychotic symptoms of any kind (unless the kitchen sink isn't actually speaking to me... jk), so I was a bit miffed by the respiridone prescription as perhaps a bit extreme for what I was told would be an effective off label adhd treatment when accompanied by stimulant meds. There is not a lot of information I can find about it helping adult adhd (actually nothing I have found online. Only childhood cases). I would consider antidepressants and wanted to ask about this, but it is heartening to hear these also might worsen symptoms. My only job I have right now is driving and it is very hard at night due to the problems with access glowing, halos, light trails and all such other night distortion, etc. (Honestly I probably should never be driving at night to begin with so I really do think want any worse symptoms than I already have.)

I Googled 'Benzodiazepines' (this u say helps the vs/hppd?) but it doesn't seem like something they'd prescribe for me. I do also worry about the mention of addiction (hence the never taken drugs thing ) as there is a lot of family history of this I just presume I have an addictive personality by genetic default not to want to risk it, and the stimulant medication for adhd (also that I havent taken yet) reports high risk for abuse as well. You said you 'had' hppd.. does this mean that you are experiencing some kind of recovery or lessening of symptoms? If so, may I ask if you were being tested with any medication that helped at all? It is not bothersome to me- particularly as I don't know a vision without it. It's weird because although I've never experienced a normal vision I feel I fully understand it and it would be nice particularly at night (tho maybe unsettling to not have anything to look at when I'm spacing out) but not something I really care if I ever get. What I am most most most eager to heal is the auditory tinnitus I got after taking the anticonvulsant medication Topamax. It is VERY bothersome to me and if there is any hope for drug induced hppd then maybe there is for drug caused tinnitus as well? ?..?? It's been 6 years now with the tinitus and it's very very loud. It's pure f--king awful

[yellowskies]

I didnt recover but I felt so much better... But this started nine months ago so I cant tell you for sure... maybe I get better... in sole cases HPPD gest better, others no... I really wish it goes away. But anyway I feel much better. I take no pills I was only telling you a "panorama" of the meds for HPPD or Visual Snow... the best is Lamictal or Keppra... the worst antipsychotic. Anyway I will recommend you talk to your psyquiatress and change your lifetile to eat healthy and lot of sports. Im sure you will feel better!!

[umit]

I see more and more people geths realy benefits from sport it is the best way to deal with hppd

[Rae]

I have nothing helpful for you in regards to treatment, but I will share my lifestyle with HPPD (non-drug induced).  I have struggled with hallucinations for as long as I can remember - back to around age 5 I think. I never (as far as I know) was near, around, or ingested any drug or hallucinogen. In fact I grew up with a family that avoided any pharmaceutical including Advil and Tylenol. My hallucinations were/are difficult to distinguish from reality. It's like a waking dream. That's how I always described it to. I never knew what it was or why it happened, it just did and when I was a kid (teen) it seemed cool that I could watch distortions of shape and color happen without the use of the drugs my friends always talked about from TV shows. When I watched the shows,, I would say.... "yeah that's cool I've had that happen before" ... They never believed me because they knew I was a straight arrow that didn't do it take anything.

The bad part is I can't control when it will happen or how long it will last. It has caused me to have many car accidents. I did evetually learn to recognize the aura and that would let me know to sit down or pull over when driving before it became a full blown trip. I Never knew until just this week (30+ years after my first episode) that it was even called a hallucinogenic trip. I knew it wasn't drug induced, so I just thought it was a kind of sleepwalking state. I referred to it many other ways over the years... I never knew that I was experiencing what people try to experience on shrooms (for example). I when I got to college, I was finally able to see a Dr about it. They went on many paths and anti-depressants and basically made me feel like I was crazy. Often it was blamed as a symptom of my PTSD. But it started earlier than my when my first trauma happened. Along with this I have severe fibromyalgia. Which now I'm believing is a symptom of the same route problem. I stopped going to Dr's because I was afraid to give them the full scoop and I could see that none were helping. I often was told to go to a psychologist,  and I did see quite a few. Some said personality disorder,  others said massive depressive disorder,  and still others were talking a type of seizure activity. About 7 years ago I had a Dr prescribe Medical Marijuana. It was the first time I ever used any kind of non-pharmaceutical medicine for my pain management. I discovered that my pain and episodes lessened - in that I was able to function better mentally and physically and any episodes I had, were becoming easier to distinguish from everyone else's reality (there are still times I'm tricked and have conversations that don't actually happen with the people I think I'm talking to). Recently I discovered that we have actual magic mushrooms growing spontaneously in my yard. I became curious and started researching how they work and what they do. I was considering trying them and wanted to be fully educated first. THAT is when I found a Ted talk on psilocybin. I was stunned to hear the lecturer describe my episodes and then identify them as level of tripping. He explained how the drug affects neurotransmitters and receptors such as serotonin.  I thought back to all the SSRI drugs that the Dr's prescribed over the years. And I thought about what I have learned about Marijuana over the past 7 years of daily use (by prescription). I realized that something must wrong with my neurotransmitters , and all paths were trying to supplement for that issue. So I started taking St. John's Wart and Sam-e otc supplements to see what would happen. They seemed to help, but I'm still new on them. Just yesterday I tried one of the srooms from my yard. I checked the dosage by weight so I wouldn't accidently over do it. I took only a microdose for my size. And the effect was highly unexpected.  Not only did I have no "trip like" reaction, it seemed to have the opposite effect from the lecture I watched. My pain was down to a 4/10 (down from 7/10), my energy was that of a normal person (where I usually passout from exhaustion every 4-6 hours), my ability to focus and remember and remain efficient was fantastic. This is what happens if I take a full dose of my cannibus medication. While I was doing so well, I was considering my observations of others that use recreational weed. Upto this point, I knew that weed didn't have the same effect on me as I did others. Everyone else described being "high". I never get that sensation, I only get pain relief. Thinking back now, I see that my hallucinations also lessened in intensity as I used weed for pain management. Funny that I used to think that I was missing out on the high everyone else seemed to experience,  just to find out that I've been tripping my whole life. I'm learning a lot about myself, and I want to understand more. Am I causing long term harm to myself by taking these medications (not drugs, since not used for a recreational experience)? Or did I discover a legit way to temper my episodes? And I want to know WHY and HOW these work for me. It doesn't seem logical that what causes normally wired brains to hallucinate somehow has the reverse effect on me. I wish I knew who I could ask. I just want a good long indepth conversation with a Dr who understands neurochemistry and neurological interactions. Not sure how to approach it, but I feel more confident that I'm not crazy (technically). This really is happening to me. And I'm Not the Only One!  

 

Thank you for posting so that I could find your story.