Reflections/Resurgence of symptoms after nearly a decade of relative remission

[bpl4269]

I never imagined that I would be back patrolling these forums again. It provides a bitter sense of familiarity. For quite some time, I experienced relative remission from my symptoms. After my initial onset of HPPD just over a decade ago, I was deep in the thick of it for four years. During this time, some symptoms abated, but most remained, and evolved. At the end of those four years, I saw the premier HPPD specialist at the time; Dr. Abraham in Massachusetts. He prescribed me benzodiazepines and after some weeks of contemplation, I began taking them habitually. This evolved into a major dependence that lasted longer than I'd care to admit. These drugs initially provided a sense of relief, but it did not last, just as I had presumed it wouldn't. I eventually became accustomed to this modality of living. Even so much as to immerse myself in new age, spiritual woo woo in a bid to justify my sense of pervasive ego death (depersonalization). At a point, I even started smoking copious amounts of cannabis again with little to no effect on my visuals. (I believe this was because I was on the benzo. Any attempt to smoke prior to being medicated significantly amplified my symptoms for months)

Fast forward.... My family ended up moving out of our home and into an apartment because of a horrific black mold infestation that rendered our home more or less uninhabitable. After this move to a newly built, clean apartment, I began to notice my symptoms diminish in intensity over the course of a couple years. To the point that I considered myself 99% recovered. At which point I deduced that the neurotoxic ochratoxin a produced by the aspergillus growing in our prior home's attic, was the limiting factor in my recovery. 99% of the physical symptoms and chronic pain I had experienced for years prior had also evaporated. From this point on, I experienced a few years of peace, completely comfortable and confident in my sense of self, and despite the struggles I faced in tapering off diazepam, it paled in comparison to what I had been through. However, during this prolonged taper, water damage was sustained in our apartment, and was never addressed. And while I could detect no presence of mold growth with my acute sense of smell, I began to feel extraordinary fatigue, depression, anxiety, and seemingly unpredictable pain yet again.

This all came to a head when I finished the taper off of the benzo. At which point, the pain was no longer intermittent, and the anxiety/depression became intolerable. I initially chalked it up simply to withdrawal, as that was what made the most sense to me at the time. After a year of this, I noticed a pattern. Ever time the HVAC would kick on, all my symptoms would get much worse. Especially when it was on very frequently in the summer and winter. And not only did it affect me physically and bring back depersonalization, but it began to affect the tiny bit of lingering visuals that I still had. And not only that, but I began to smell the same mold that grew in our prior home again. The pain and trauma of knowing that my health was on a sharp decline again, and that there was nothing I could do about it, sent me into a tailspin. I began smoking weed again, because, I smoked it all throughout my taper, and didn't really have much of an issue with it. Aside from the occasional minor withdrawal setback from it.  First, it was fine. In fact, I was able to tolerate more than I had been able to during my withdrawal. But it turned on me. After a month of nightly use, trying to numb my pain, I ran out, and decided to dip into a 1 to 1 THC/CBD tincture that I had never used. Three drops and three milligrams later, I was completely disassociated again, and my vision had worsened. I chalked this up as something that would probably only last a few days, and pushed through it. 

Now here I am, 48 days later, and it's difficult to say whether there has been any improvement. In fact, some of my visuals have gotten worse over this period of time since onset. Palinopsia, starbursting, halos and trails have reemerged, negative after images have become much more intense, visual snow has come to pay me a visit again, and objects/words flicker/breathe in my peripheral vision. Not to mention, the depersonalization and intolerable anxiety of unknown origin that I cannot seem to exert control over. Alongside these symptoms, I have also noticed tinnitus, sound sensitivity, head pressure, a markedly increased startle response,  new rashes that I have never had before, heart palpitations/adrenaline dumps in the mornings, and probably more I am not remembering. 

My theories as to why this has happened have evolved from potentially having reinjured downregulated GABA receptors, to triggering and amplifying latent mast cell activation syndrome. Obviously the issue of mycotoxin illness plays into this as well, given the fact that I have high levels of ochratoxin a in my system, as well as citrinin, but I have a difficult time believing it is the sole cause when I was able to maintain a difficult, but still somewhat tolerable baseline prior to and relative to this. Though I suppose it is possible that there were indications that this was looming, that I did not take note of in my complacency. 

In any case, I can speculate all I want, but the nature of the complex health issues that I have, which includes lyme disease, makes it very difficult to assess and pin down exactly what is causal to what. And if there's anything I've learned over the years, there is no doctor competent or caring enough to have a depth of knowledge comprehensive enough regarding lyme disease, mold toxicity, mast cell activation, HPPD, and benzodiazepine induced neurological damage, to make an assessment, or craft a treatment plan that doesn't in some roundabout way, make one or more of these conditions worse. To say that I am overwhelmed right now is an egregious understatement. I understand that panicking in this situation is not something that will benefit me, as I have been here before, and I am refraining from doing so, but every fiber of my being wants to bang my head against the wall in frustration. To think that I could have dropped the ball to such a degree is a mistake I have difficulty letting myself live down. 

At the end of the day, I'm 30 years old, and have been functionally disabled by a multitude of illnesses, both physically debilitating, as well as mentally crippling for a good 15 years of my life. With at the most, a few years of reprieve. Makes me feel like a useless sack of shit. In a sense, it all just feels like a fever dream. As if I should wake up at the end of all this in another man's body, and breathe a huge sigh of relief, knowing it was all just a very vivid nightmare. I can cope quite well with physical pain, but having this resurgence of HPPD, ego crushing depersonalization, and severe, ever-present anxiety is soul crushing in as literal a sense as you can conceive. The thing I look forward to most every day is resting my head to sleep. Everything else is just something I have to put up with in pursuit of that unconscious state of rest. But I'm still here, and still trying to tweak, modify, and optimize this situation, as bad as it is.

If you made it this far, I appreciate you taking the time to read. My situation is not one that can be easily condensed for the sake of brevity. Hence the novel above. I'm not sure what I'm attempting to accomplish by posting this either, other than catharsis, but maybe there is someone who might have some useful or encouraging input. One can hope. I wish you all good health and recovery. And if you're new and reading this, based on my experience, this condition is not a life sentence. Keep your heads up and keep pushing. I know that's easy to say, and much more difficult to do, but sometimes you truly have to be ground into dust to realize the depths of your resilience. Best wishes to all of you. - Ben

[AF44]

On 5/22/2024 at 7:33 PM, bpl4269 said:

I never imagined that I would be back patrolling these forums again. It provides a bitter sense of familiarity. For quite some time, I experienced relative remission from my symptoms. After my initial onset of HPPD just over a decade ago, I was deep in the thick of it for four years. During this time, some symptoms abated, but most remained, and evolved. At the end of those four years, I saw the premier HPPD specialist at the time; Dr. Abraham in Massachusetts. He prescribed me benzodiazepines and after some weeks of contemplation, I began taking them habitually. This evolved into a major dependence that lasted longer than I'd care to admit. These drugs initially provided a sense of relief, but it did not last, just as I had presumed it wouldn't. I eventually became accustomed to this modality of living. Even so much as to immerse myself in new age, spiritual woo woo in a bid to justify my sense of pervasive ego death (depersonalization). At a point, I even started smoking copious amounts of cannabis again with little to no effect on my visuals. (I believe this was because I was on the benzo. Any attempt to smoke prior to being medicated significantly amplified my symptoms for months)

Fast forward.... My family ended up moving out of our home and into an apartment because of a horrific black mold infestation that rendered our home more or less uninhabitable. After this move to a newly built, clean apartment, I began to notice my symptoms diminish in intensity over the course of a couple years. To the point that I considered myself 99% recovered. At which point I deduced that the neurotoxic ochratoxin a produced by the aspergillus growing in our prior home's attic, was the limiting factor in my recovery. 99% of the physical symptoms and chronic pain I had experienced for years prior had also evaporated. From this point on, I experienced a few years of peace, completely comfortable and confident in my sense of self, and despite the struggles I faced in tapering off diazepam, it paled in comparison to what I had been through. However, during this prolonged taper, water damage was sustained in our apartment, and was never addressed. And while I could detect no presence of mold growth with my acute sense of smell, I began to feel extraordinary fatigue, depression, anxiety, and seemingly unpredictable pain yet again.

This all came to a head when I finished the taper off of the benzo. At which point, the pain was no longer intermittent, and the anxiety/depression became intolerable. I initially chalked it up simply to withdrawal, as that was what made the most sense to me at the time. After a year of this, I noticed a pattern. Ever time the HVAC would kick on, all my symptoms would get much worse. Especially when it was on very frequently in the summer and winter. And not only did it affect me physically and bring back depersonalization, but it began to affect the tiny bit of lingering visuals that I still had. And not only that, but I began to smell the same mold that grew in our prior home again. The pain and trauma of knowing that my health was on a sharp decline again, and that there was nothing I could do about it, sent me into a tailspin. I began smoking weed again, because, I smoked it all throughout my taper, and didn't really have much of an issue with it. Aside from the occasional minor withdrawal setback from it.  First, it was fine. In fact, I was able to tolerate more than I had been able to during my withdrawal. But it turned on me. After a month of nightly use, trying to numb my pain, I ran out, and decided to dip into a 1 to 1 THC/CBD tincture that I had never used. Three drops and three milligrams later, I was completely disassociated again, and my vision had worsened. I chalked this up as something that would probably only last a few days, and pushed through it. 

Now here I am, 48 days later, and it's difficult to say whether there has been any improvement. In fact, some of my visuals have gotten worse over this period of time since onset. Palinopsia, starbursting, halos and trails have reemerged, negative after images have become much more intense, visual snow has come to pay me a visit again, and objects/words flicker/breathe in my peripheral vision. Not to mention, the depersonalization and intolerable anxiety of unknown origin that I cannot seem to exert control over. Alongside these symptoms, I have also noticed tinnitus, sound sensitivity, head pressure, a markedly increased startle response,  new rashes that I have never had before, heart palpitations/adrenaline dumps in the mornings, and probably more I am not remembering. 

My theories as to why this has happened have evolved from potentially having reinjured downregulated GABA receptors, to triggering and amplifying latent mast cell activation syndrome. Obviously the issue of mycotoxin illness plays into this as well, given the fact that I have high levels of ochratoxin a in my system, as well as citrinin, but I have a difficult time believing it is the sole cause when I was able to maintain a difficult, but still somewhat tolerable baseline prior to and relative to this. Though I suppose it is possible that there were indications that this was looming, that I did not take note of in my complacency. 

In any case, I can speculate all I want, but the nature of the complex health issues that I have, which includes lyme disease, makes it very difficult to assess and pin down exactly what is causal to what. And if there's anything I've learned over the years, there is no doctor competent or caring enough to have a depth of knowledge comprehensive enough regarding lyme disease, mold toxicity, mast cell activation, HPPD, and benzodiazepine induced neurological damage, to make an assessment, or craft a treatment plan that doesn't in some roundabout way, make one or more of these conditions worse. To say that I am overwhelmed right now is an egregious understatement. I understand that panicking in this situation is not something that will benefit me, as I have been here before, and I am refraining from doing so, but every fiber of my being wants to bang my head against the wall in frustration. To think that I could have dropped the ball to such a degree is a mistake I have difficulty letting myself live down. 

At the end of the day, I'm 30 years old, and have been functionally disabled by a multitude of illnesses, both physically debilitating, as well as mentally crippling for a good 15 years of my life. With at the most, a few years of reprieve. Makes me feel like a useless sack of shit. In a sense, it all just feels like a fever dream. As if I should wake up at the end of all this in another man's body, and breathe a huge sigh of relief, knowing it was all just a very vivid nightmare. I can cope quite well with physical pain, but having this resurgence of HPPD, ego crushing depersonalization, and severe, ever-present anxiety is soul crushing in as literal a sense as you can conceive. The thing I look forward to most every day is resting my head to sleep. Everything else is just something I have to put up with in pursuit of that unconscious state of rest. But I'm still here, and still trying to tweak, modify, and optimize this situation, as bad as it is.

If you made it this far, I appreciate you taking the time to read. My situation is not one that can be easily condensed for the sake of brevity. Hence the novel above. I'm not sure what I'm attempting to accomplish by posting this either, other than catharsis, but maybe there is someone who might have some useful or encouraging input. One can hope. I wish you all good health and recovery. And if you're new and reading this, based on my experience, this condition is not a life sentence. Keep your heads up and keep pushing. I know that's easy to say, and much more difficult to do, but sometimes you truly have to be ground into dust to realize the depths of your resilience. Best wishes to all of you. - Ben

Hi,

I really don’t have anything helpful to say, but I’m so very sorry you are going through this and I am praying you will feel better. I was also wondering about mold. I’m convinced there’s black mold in this house we bought a couple of years ago (one half of a duplex.) My husband said there is no mold because we had an inspection done before we bought the place. We did have black mold in our prior rental house. There are days I don’t feel well and I was becoming fixated (obsessed) on the “mold” we supposedly don’t have. I have Chronic Fatigue Syndrome and it sucks so bad, on top of that I take like 6 different meds that have sedating side effects. I’ve been on Klonopin every single day for the past 14(?) years or so, which of course makes me even more tired but it is the ONLY thing that has ever helped my symptoms. To me it’s a miracle drug. Anyway, I meandered away from the actual thing I was trying to talk about (I do that all the time!) How do you test for mold or whatnot in your system? Besides that, as I said, I don’t really have anything helpful to say but I sincerely hope you start feeling better. (And I don’t mind reading novels because all my posts are novels too )