Meds that help, meds that don't, and what I'll be trying soon

[BigPapaChakra]

Hey everyone, hope you're all doing well. I just wanted to ask this and then notify everyone of some things I'll be trying so if I have success other can maybe try, too.

 

I was wondering, what meds have helped the most and what have done more or less nothing?

• what meds helped with DP/DR specifically?
• What Benzos or benzo-like compounds helped the most?

I'm going to be exhausting every possible resource in the coming months to get myself help as the past few days have been hellish in every possible way. I posted about niacinamide and it helping anxiety and someone stated how it can be neurotoxic and I do in fact believe that it had some neurotoxicity in me. Some people (i.e. Dr. Peat) believe that Serotonin leads to aggression, aging, etc. and there is a lot of evidence showing this, but I believe context is key.... my past history of drug use leads me to believe I may have low levels of multiple neurotransmitters, serotonin being one. Niacinamide lowers serotonin at the doses I was using; I had been going up and down with this HPPD over the past 2 months (though I've had it much longer), some days feeling great and others feeling absolutely psychotic, though within a week of using high doses (4-5g/day) of niacinamide I felt more insane than ever. I've had no balance or coordination, no motivation, lack of energy, depression (I started crying about hypothetically losing my fiance over this HPPD nonsense, and I never cry or feel particularly sad), DP/DR has been unreal, etc. I've been working on a blog/app with some people as my job for the time being, having the privilege of working at home with this debilitating disorder, but I couldn't even manage to blog or take any tests online for school. I barely even ate (lack of appetite) and just couldn't get out of bed. I think the only thing that got me through it was a generally optimistic 'everything can be cured' kinda disposition along with adequate red light from an infrared heat lamp and CES sessions like 4x a day. Today I'm finally feeling back to 'normal' which is just my regular ol' severe HPPD self.

 

So, what am I going to try? Well, for starters:

• Transcendental Meditation through the Transcendental Meditation Institute when their local courses start (I will probably do private one-on-one meditation sessions)
• Psychotherapy of some sort - there is a local organization that sends counselors/psychologists to your home for a few dollars and through this I hope to be pointed in the direction of a helpful, permanent psychologist/psychiatrist so I can get meds
• Z-Health: There is some master trainer located nearby and I believe this has the possibility to offer me and other HPPDers a lot of help as it is all about sensory perception and movement; it trains your brain to create more efficient 'maps' of your environment and body as to move about it in a more functional, efficacious way. They also do a lot of visual training that has been known to help people with both poor vision and sensory disturbances alike. Many people with epilepsy, Parkinson's, TBI, etc. have been helped through Z-health. The whole idea of changing your 'brain maps' drew me in as we have a sensory disorder and I believe this holds potential for overcoming DP/DR, at least slightly
• Brain Based Therapy: a 'therapy' that was developed by Chiropractic Neurologist Dr. Frederick Carrick; there are fortunately two highly praised BBT functional diagnostic nutritional doctors/physicians in my area. Here is an excerpt from one: " The cerebellum is key to the brain loop

  Another key to the “brain loop” functioning properly is the cerebellum, which has a number of responsibilities including your balance, coordination, spinal posture, eye movement and a number of other functions that keep you body healthy and active.

   

  Poor functioning of the cerebellum can cause a wide variety of problems, including problems with your postural muscles, (including a one-sided muscle spasm that adversely affects your spine). Once this occurs, certain vertebrae become restricted and spinal degeneration, arthritis, disc herniations, chronic back and neck pain, even sciatica may develop. Dizziness and balance disorders are often attributed to cerebellar dysfunction.

  Treatment and Brain Based Therapy

  After a thorough BBT neurological examination, a dynamic, safe, gentle and hands-on integration process is carried out to reconnect and restore proper brain function. In some cases, traditional chiropractic adjustments are part of the treatment, given in a very precise manner designed to stimulate function in the effected part of the brain. Additionally, other modalities such as heat, eye movements and exercises, and visual are sometimes used."

The other practitioner/BBT clinic has other interesting modalities, too: "Eyelights Therapy – Eyelights were designed to provide optimal stimulation to the brain using the optic nerve. Glasses designed with flashing lights built to fit behind the lens, they can be programmed to blink on the non-dominant eye in order to strengthen the weaker side of the brain. Since one of the most direct avenues to the brain is via the eye, a child can learn more effectively if they are seeing correctly. And an athlete will perform better because the eye is able to gather all of the information necessary to perform.

“By stimulating the weaker hemisphere of the brain you allow it to become stronger, thus improving overall performance. One method of stimulating the brain is to use light pulses. When using Eyelights you can control the intensity, frequency, and pattern of light pulses, which will result in being able to “wake up” the weaker side of the brain.” (...) "Interactive Metronome®: A computerized brain-based rehabilitation assessment and training program.  Has helped patients with ADD/HD, Learning Disorders, MS, Parkinson’s, Stroke Rehab.  Reprograms timing and balances the brain.  Dr. Serpe is a Certified Interactive MetronomePhysician.  Visit www.interactivemetronome.com for more information."

Additionally, I'll be restarting the complete TULIP protocol (LEDs+PQQ+CoQ10+Shilajit) in addition to my leftover creatine and CBD oil and gum while waiting on this trial bottle of RNA drops and a BioMat Pro. The RNA drops are highly intriguing and slightly off-putting. For instance, it supposedly affects Chromosome 14 in our bodies and through this changes our cell turnover and proteins and so forth. If watch the video I linked the reports from people are astounding. Everyone reports starting to feel complete absence of stress and anxiety and a feeling of contentedness, connection, etc. Someone referred to it as "spirituality in a bottle". The thing is some people have reported some experiences where for a few hours or a day or two they are in a psychedelic-ish state: textures start warping, things become wavy, etc. That's off-putting to me just because of my extreme DP/DR+anxiety and if that started happening I'd probably freak out. The BioMat seems promising for a variety of problems, but I'm not trying to get my hopes up for such an expensive product. I'm simply hoping it can decrease my anxiety/panic attacks and act as a mood brightener, anything else will be a nice beneficial side-effect from my perspective.

Lastly, I plan on eventually getting some EEG/qEEG/Brain Mapping done and then applying these findings to neurofeedback - there is a 'master clinician' in my area that uses the renown NeurOptimal device which besides the TAG-Synchrony is supposed to be the best for NFB. This will just be prohibitively expensive thus I'm inquiring about payment plans and what not. Even if I could just get brain mapping done that would be a huge help as I can then apply that knowledge to myself when acquiring a home NFB and/or nIR HEG unit.

Sorry about the length of this. I hope I get some responses as to what meds to look into (I'll also be purchasing a bunch of Etizolam in the near future), and I hope that despite the annoyingly long length of my post it was at least intriguing and perhaps thought provoking as to alternative means of treatment for others suffering. It's also hard not to ramble when the people at this forum are the only ones who can relate to what I go through on a daily basis. I truly hope to overcome this (even partially) so I can then best apply my energies into helping others with HPPD and associated symptoms/disorders. Thanks, and I once again wish you all the best!

 

[brake]

I had the same experience with taking niacin for a few days straight (except I took it with other b vitamins too). I felt miserable, would cry almost the entire day, felt like I ruined my life and let everyone down because of HPPD, had a hard time eating as well, etc.

Thanks for all the info though!

[BigPapaChakra]

Glad you found the info useful/interesting! I find it interesting that you, too, had a similar experience with niacin(amide?). I started taking it because over the period of a week or two I felt things gradually taking a turn for the worse (most symptoms were increasing, hard to attend school, constant fear of the symptoms, etc.) and thought it would offer relief from anxiety and I was looking forward to the purported long term benefits (increasing glucose oxidation and aiding the thyroid by keeping FFAs low and so forth); it was nice at first - I definitely felt calm(er) and more content, yet then within a few days of taking large doses it was like I was experiencing all of my HPPD symptoms to their absolute greatest magnitude possible. I seriously contemplated going to the ER but I knew that'd just lead to nothing good (perhaps inpatient, temporarily) and thus I just stuck it out and now feel like I'm back to my typical baseline. It's a little disheartening, though, because I wanted to give Tianeptine a trial but now I think that's a bad idea - niacinamide at the large doses I took enhance serotonin uptake just like Tianeptine does, and my experience was/is not one I'd like to relive. 

[brake]

Yeah it was niacinamide plus all the other b vitamins. And yes the first day it was super relaxing but I think by day 3 I felt EXTREMELY depressed and down.

[BigPapaChakra]

Yeah that's pretty much exactly what happened with me - right around day 3 I started feeling worse and I didn't make the connection and I actually increased my dose by about 2g for another two days... haven't taken anything yet today. I'll just wait to restart TULIP and take CBD+l-theanine as needed until I try these other things.

 

Oh yeah, I'm also thinking about running a bunch of genetic tests (there's some other more extensive one than 23andMe, but I can't think of the name, though it's in my notes somewhere). This should offer me better knowledge as to what meds and supp's I should spend my time on. I was born anemic and low on iron yet anemia can often be 'cured' without eating more/supplementing iron via correcting thyroid function and other underlying nutrient deficiencies - I'd be interested to learn if I have trouble processing different B-vitamins..

[Syntheso]

Cheers for the info. I haven't read through it properly, but something else you might want to try is vision therapy. I had to take a break because my co-morbid symptoms were making it difficult to leave the house last year, but am planning to book in again shortly. Basically it teaches you how to use your visual system correctly, that is, vision in the brain, and, change your behaviour with regards to the way you utilise your eyes. I now pick up on lots of incidences where I zone out and let my eyes blur when they don't need to, and other incidences where for example I might be exerting too much pressure on my eyes, simply to look at something. I believe incorrect use of the visual system is probably more prominent in HPPD'ers due to sensory overload, and that it makes more problems down the line and elongates recovery. I also believe that incorrect use of the visual system has lead to absence seizures in myself. There are lots of exercises they give you. My therapist is confident that we can remove my visual snow through vision therapy.

[StateOfRegret]

Cheers for the info. I haven't read through it properly, but something else you might want to try is vision therapy. I had to take a break because my co-morbid symptoms were making it difficult to leave the house last year, but am planning to book in again shortly. Basically it teaches you how to use your visual system correctly, that is, vision in the brain, and, change your behaviour with regards to the way you utilise your eyes. I now pick up on lots of incidences where I zone out and let my eyes blur when they don't need to, and other incidences where for example I might be exerting too much pressure on my eyes, simply to look at something. I believe incorrect use of the visual system is probably more prominent in HPPD'ers due to sensory overload, and that it makes more problems down the line and elongates recovery. I also believe that incorrect use of the visual system has lead to absence seizures in myself. There are lots of exercises they give you. My therapist is confident that we can remove my visual snow through vision therapy.

That sounds very, very interesting. Can you provide any links with general information? I'm trying to determine if something like that exists in my country.

[BigPapaChakra]

Yeah, I'd appreciate some information on those exercises/therapies, too. I'm not sure if any of you guys are familiar with Oliver Sacks, a neurologist and chemist who has a authored a bunch interesting books, but he has worked with a bunch of people with very odd disorders/syndromes similar to ours. In one of his presentations (can be found on youtube) he speaks of a woman whose vision became 2-D but after a long period of working with some sort of holistic visual doctor and doing different visual exercises she eventually came to have normal, 3-D vision again. He's spoken about different meds and exercises like this for people who have suffered from various forms of psychoses and hallucinatory states, too.

 

That's why I think working with a Z-Health practitioner could be of great benefit. It's a mix of movement, visual, and auditory exercises that more or less reprogram and/or enhance your brain 'maps'. The results with people suffering from pain and extreme movement disorders are pretty profound, and I consistently see this master trainer on facebook claiming he has daily success with people with epilepsy, Parkinson's, Lyme, and so forth.

 

Interestingly, I remember when I drank Bulletproof Coffee daily, with or without restricting daily carbs (more often than not I did, though) I had much less anxiety and panic attacks, let alone greatly increased cognition. I know that beta-hydroxybutyrate has been shown to promote GABAergic activity in different brain regions along with enhancing both oxygen consumption and utilization in the brain. I'm really hopeful that my monthly paycheck is coming on the 21st because I may get BPC again but with Brain Octane oil as opposed to MCT Oil and then etizolam and see how that affects my cognition. 

[Silva]

Aldous Huxley was nearly blind because an illness during his teens. He practiced the Bates Method and wrote the book The Art of seeing after his eyesight dramatically improved with it.

 

He was also really into LSD but it seems he never had HPPD.

 

I will try to follow a therapy in autodidact as well.

[Syntheso]

Aldous Huxley was nearly blind because an illness during his teens. He practiced the Bates Method and wrote the book The Art of seeing after his eyesight dramatically improved with it.

 

He was also really into LSD but it seems he never had HPPD.

 

I will try to follow a therapy in autodidact as well.

Yes! Alexander Teachnique + / Bates methods applied to this are something else I am interested in. Good mention...

[Syntheso]

That sounds very, very interesting. Can you provide any links with general information? I'm trying to determine if something like that exists in my country.

Check this thread out for the original discussion; http://hppdonline.com/index.php?/topic/2234-a-new-direction-of-treatment/

Let me know if you have any queries.

[BigPapaChakra]

Very interesting. I may look into behavioral optometrists in my area. I've been digging and I've seen people on co-morbid disorder forums claim that various forms of neurofeedback helped their DP/DR extensively, and one person who used the Zengar NeurOptimal claimed it cured their DP/DR (I believe). That's really the realm I want to get into next, but it's incredibly expensive. I think NFB+eye exercises would pair together very well, though. I want to look into Irlene glasses, too. 

[BigPapaChakra]

Interesting info I just found on PQQ, which I just re-added today (at 20mg) - skip to the bottom for how it can be relevant to HPPD via NMDAr's:

 

"Pyrroloquinoline Quinone (PQQ) is a B vitamin-like cofactor that occurs naturally in most plant foods and in most organs and tissues. The most important effects of PQQ is the growth of new mitochondria otherwise known as mitochondrial biogenesis. - Pyrroloquinoline Quinone stimulates mitochondrial biogenesis through cAMP response element-binding protein phosphorylation and increased PGC-1 alpha expression, Chowanadisai, W, Journal of Biol Chem 285: 142-152 (2010) 

Over 15 years of research has underscored the unique properties of PQQ and maintaining neuronal integrity. The diverse cellular mechanisms of PQQ distinguish this powerful quinone antioxidant from other neuroprotective dietary supplements. The effects of PQQ on neuronal function partially stem from influence on mitochondrial homeostasis. While many nutritional supplements support mitochondrial bioenergetics by acting as metabolic cofactors, where PQQ generates de novo synthesis of mitochondria by the activation of the transcription factor CREB (cAMP coactivator 1 alpha). - Pyrroloquinoline Quinone modulates mitochondrial quantity and function in mice, Stites T, J., Nutr 136:390-396 (2006); Pyrroloquinoline Quinone nutritional status alters lysine metabolism and modulates mitochondrial DNA content in the mouse and rat, Bauerly, KA,Biochem Biophys Acta 1760:1741-1748 2006; Comparison of Pyrroloquinoline Quinone and/or metoprolol on myocardial infarct size and mitochondrial damage in a rate model of ischemia/reperfusion injury, Zhu BQ, J. Cardiovasc Pharmacol Ther 11:119-128 (2006)

PGC1alpha promotes expression of a network of genes involved in the synthesis of mitochondria. - sited above as Chowanadisai, W Thus the mitochondrial effects of PQQ compliment are similar to the well-known properties of CoQ10. While CoQ10 Plays a bio energetic role within the mitochondrial membrane, PQQ supports the coordinated process through which new mitochondria are regenerated.

PQQ also supports neuronal health through intracellular targets that are distinct from CoQ10 and are largely unprecedented in the realm of nutritional supplementation. For example PQQ maintains healthy levels of DJ-1, protein that plays a role in antioxidant defenses in dopaminergic neurons. PQQ also supports biosynthesis of nerve growth factor (NGF) an important signaling molecule in the brain and sensory nerves. - sources all cited already and Biocompatibility studies of naltrexone sustained release formulations, Yamaguchi K, J Control Release 19:299-314(1992); Synthesis of monoesters of Pyrroloquinoline Quinone and imidazopyrroloquinoline and radical scavenging activities using electron spin resonance in vitro and pharmacological activity in vivo, Urakami, T, J Nutr Sci Vitaminol Tokyo 43: 19-33 (1997)

Perhaps the most salient discovery over the past two decades of research on PQQ and neuronal function is it's ability to balance activation of ionotropic glutamate receptors. The N-methyl D-asparate (NMDA) receptor is the primary conduit for excitatory glutamate neurotransmission and is regarded as an important target for manipulating neuronal health. PQQ Supports synaptic and intracellular responses by maintaining healthy NMDA receptor activity. - Interaction of the putative essential nutrient Pyrroloquinoline Quinone with the N-methyl-D-aspartate receptor redox modulatory site, J. Neurosci 12:2362-2369 (1992)

Recent studies indicate that PQQ supports cognitive function. It one study involving rats, PQQ supplementation supported performance in a water maze test. -Pyrroloquinoline Quinone prevents cognitive deficit caused by oxidative stress in rats, Ohwada K, J. Clin Biochem Nutr 42:29-34 (2008)

In a randomized double blind study of 71 middle aged individuals, PQQ supplementation over 12 weeks promoted mental process. In the same study a combination of PQQ and CoQ10 was more effective than either alone. - Effect of Pyrroloquinoline Quinone (PQQ) on mental status of middle-aged and elderly persons, Nakano M, FOOD Style 21:50-53 (2009)"

 

I feel like I'm just starting to get my cognition back slightly, so I'll start studying some biology/neurology related information and try to decipher more studies on PQQ and how it's relevant. Really hopeful that the combo of PQQ+Creatine can help a lot while I await on etizolam and the BioMat...