Before I got cancer at 54, I wouldn't even take an Advil. I was a vegan with nutritional expertise, a daily jogger, a beginning and lousy qi gong practitioner, a daily if low-key exerciser, a birder, an educator, a loving wife, mother, daughter and sister. I was physically healthy aside from mild arthritis. I had mental health issues: moderate depression (depression started when I was laid off because of budget cuts at 47. I was NTT), severe health anxiety (the irony -- ultimately, it's destroyed my health), OCD.
Now, because the drugs have caused such havoc, I could've easily qualified in a few years for the right-to-die because of my resulting physical and cognitive illness. However *because of the drugs*, I am disqualified. It is an irony that I just can't accept.
It started with getting cancer (basal cell on my nose which had to be reconstructed. The dermatologist told me it was a wart-like virus in 2018. Every year after she said it was fine) at 54. I got depressed (agitation depression -- no appetite) and had brutal insomnia. Without exaggeration, sometimes I had zero to two hours of sleep for days. But although severely depressed, I was still me. I still had great executive function. Handled my dead father's estate, set up my mother's trust, arranged our move that I begged my husband not to make, etc.
This post is about all the drugs and their fallout for 2 1/2 years. It might serve as a cautionary tale. It is a horror story. I think it is really important to share, though, if it helps a younger person avoid this path. You will see that I bear a lot of responsibility here. I have really screwed up all on my own, drugs or no drugs. I did have mental health issues before drugs: depression, trauma, OCD, severe healthy anxiety. In addition, you will see that it is a story of not just the drugs and my own destructive ways, but the story of inept, terrible doctors, some of whom I believe crazy in their own right (the inpatient psychiatrists) with a pathological, power-driven mindset.
It is very, very long. It will probably never be read by anyone. But I think it's worth reading if you are considering drugs, or drugs aren't working for you but you are being coerced to try new ones.
I think I am also writing it all out in hopes that if I do get lucky and ctb, I could direct my son to this thread since he won't listen to my story. I need him to understand about the drugs. It is not my suicide note to him, which will be very different and just full of love and memories. No bitterness. He deserves better. And this narrative is extremely bitter.
My PCP prescribed Remeron 15mg -- my current psychiatrist said that was a strange first choice, gold standard being an SSRI, and Remeron being the wrong choice for my kind of depression. No effect except for some mild sedation, which gave me a couple of hours of sleep initially. He bumped me to 30 mg. No effect. Put me on Valium for insomnia. Switched me to Ativan, no taper. Helped somewhat but executive function started to deteriorate.
Months later, I saw a psychiatrist who was 10 minutes late. He was so odd, narcissistic, wildly inappropriate and prurient about my previous trauma of rape. He was also wildly patriarchal and spoke to my husband half the time. He had a huge picture of his children on the wall and said, when I told him about my newborn son' misdiagnosis and subsequent NICU trauma (read on for that trauma story)" Oh boy, they ruined him, I am so sorry, as you can see I am a parent too" and pointed to this picture ). He put me on Ambien which started my vision and memory problems: double vision. Stopped that, went back to Ativan.
My PCP switched me months later to Lexapro-- started my severe tinnitus and made me very dizzy. So he stopped that and he put me back on Remeron.
I saw a new, clueless psychiatrist where my real troubles began. She and the PCP had me on Remeron 30mg, Ativan 1 mg, and Belsomra 20mg-- all CNS depressants. I started to become a zombie, hardly moving, no longer jogging, maybe walking a mile or two, no shopping or cooking. More depressed than ever. Brain fog. Bowel problems started.
Put me on Lexapro again at a much higher dose, which gave me the start of my tinnitus. Stopped that. Put on Wellbutrin -- current psychiatrist says the exact wrong antidepressant for my kind of depression. It gave me much worse tinnitus, plus a rash so bad I was hospitalized for it -- it had been misdiagnosed three times as shingles. A long course of prednisone prescribed, made my bowels worse.
I asked this psychiatrist what she thought about psilocybin; she wholeheartedly endorsed it, saying it was my best chance to get better, that it would put a" fresh layer of snow" on my brain rather than just "patching up" with antidepressants. She thought this would be much better than ketamine which I could have done because it might make my tinnitus worse. I ended up a few months later taking it. I would never have taken it without her enthusiastic endorsement. It did not help but made me relive past trauma. It retraumatized me and I threw up for two days. My son believes it was way too high a dose and did something really bad to my brain.
I am not sure. I was still able to book an Airbnb, visit my mother -- and look at a house my husband wanted to buy back home. He was desperate to get me out of the miserable Midwestern town that depressed me in the first place. But he had me agree to buying it three days after my mushroom trip. He was very forceful, having me sign initial paperwork. I was very suggestible and physically sick and it was all a dream. I agreed to buying this house and moving. I came to my senses about it soon after but it was too late. More on this fatal move soon.
I include psilocybin as a psychiatric drug. It should never have been given to me. I had several online meetings with this licensed therapist and I gave her a detailed account of my mental health conditions. In hindsight, I should never have taken it.
Back to the Midwest. I was still not sleeping; she prescribed gabapentin, hydroxyzine, etc. Then she put me on 45mg of Restoril, 15mg over FDA allowance. I took it one night, knew it was way too much because I couldn't get up. Took 30mg the next night -- experienced OD. Couldn't move, talk, or even squeeze my husband's hand to respond. Didn't leave couch for 2 days. My neck started wobbling.
It changed me for good. No longer felt like myself, no longer felt human.
Decided to stop everything. They wanted to try Cymbalta. Maybe I should hae tried, but forget it. I was done. At least voluntarily. Began weaning off Ativan. Psychiatrist put me on Valium to help with taper -- had paradoxical effects. No sleep for days. My agitation and fear and feeling of despair were through the roof. (before you wonder, I am not bipolar. Even all these terrible psychiatrists I have unfortunately have had to deal with ( outpatient and inpatient) and my current psychiatrist (nice man but still a psychiatrist, which gives him a drug mindset and a closed--off predetermined mindset) agree that I have never had mania, never exhibited a single manic trait. I have never been impulsive, I definitely don't have delusions of grandeur. I was always down, down, down. I didn't have decreased need for sleep -- even now I feel every lost hour. Etc. The first inpatient dr gave me a psychotic depression diagnosis and they all run with that. Totally false but at least they know it's not mania.) Valium gave me essential tremor. The withdrawal from Ativan made me lose bowel control. My cognition worsened.
Benzodiazepines should be criminalized, in my opinion. They started my ruin. And yet that psychiatrist gave me 90 days' supply of Ativan, with refill when we moved.
We moved. New psychiatrist put me on Lexapro (said I ahpuld live with the tinnitus and that this was my ladt chance to get better) and Seroquel. Seroquel caused my metabolism to change and gave me prediabetes. It is now masked diabetes, masked because I don't eat much. But my random glucose is still sky high and my last A1C was close to 6. I have to wait to get into an endocrinologist, months from now. My PCP is never available and she says m A1C has to be higher for her to refer me to an endocrinologist. It worsened my liver function. It caused SIADH (separate post about this being a factor of why I need to ctb, but I write about it a bit here because for older people it is an uncommon but recognized side effect caused by psychiatric drugs), was immediately hospitalized for acute hyponatremia (120) which caused heart arrhythmia ( I have PVCs all the time now) likely mild brain damage and near delirium. If I hadn't got to the hospital wjen I did, I would be dead. I dearly wish I hadn't gone. I apparently in this state told nurse I hoped I wouldn't wake up.
That's when they put me in psych ward for 2 weeks, gave me Abilify which worsened my myopia, put me on 60mg of Prozac, making hyponatremia worse. They put me on clonazepam, which as way stronger than Ativan and made me totally out of it. And of course didn't help me sleep. Received psychotic depression diagnosis -- have never had a psychotic moment in my life. This diagnosis itself is bad healthcare. No one -- doctors, family -- believes me anymore. Plus, it prohibits me from right to die, which I now need and for which I will qualify soon.
Stopped Prozac as soon as I got out to preserve my brain, bone (hyponatremia causes brain damage and osteoporosis) and most of all kidneys. Hyponatremia -- it was acute and now chronic-- damages the kidneys. I now am a lifelong kidney patient. SIADH is so restrictive, leading to severe nutritional deficiencies. Stopped the eye-destroying Abilify and the new psychiatrist thought I should quit clonazepam -- no taper again -- and go right back on Ativan. All this switching with weaning is so, so bad for the brain. No doctor tried or even warned me about it. Just hans it put like candy. By the time I knew this constant switching without tapering was terrible but I also knew what PAWS (prtroacted withdrawal syndrome)did to me. PAWS alone is enough for a lifetime. PAWS alone will make a person want to ctb.
The only drug I have been on since is Ativan. I went back on it -- not because it works but because after three years of dependence, my body couldn't handle withdrawal. Benzos have destroyed my gut biome, as does SIADH. It is such a restrictive diet that it leads to nutritional deficiencies. No veggie-packed soy smoothies, no coffee, no fermented foods that all help gut biome.
So even though I am mostly off drugs, in a way this is when my real troubles began. The fallout from them is extraordinary.
The zombification led to an extremely sedentary life. I am basically bed- and house -bound. I am this way both because of physical limitations (pain, incontinence, no prescription sunglasses, etc) but mostly emotional. My devastation is keeping me from moving. I am paranoid about the sun because even when I coat my nose with sunscreen, washing it off makes my nasal valve collapse worse. A wide- brimmed hat isn't enough. I also have had other pre skin cancers removed and I am so anxious about the sun now.
It is also so beautiful here and it causes me such pain to be here, knowing I have to leave it. I know this is extreme. I am also socially dysfunctional. I was a social person once, greeted everyone, made friends easily. I am now agoraphobic, which I have read is a side effect of benzos. I am also now so self conscious about my nose (read below about why it became further deformed) and my hunched back and neck ( again keep reading to see what happened to them).
This frozen state contributes to my muscle loss, osteoporosis, arthritis ( really bad hips) malnutrition (I can no longer shop or cook or myself), cognitive loss. My heart and lungs are like an old lady's. I have had little vitamin D from sunlight in 2 1/2 years. My neck and back are so weak. I already had a bad weak arthritic neck and back (I was in PT for years very enthusiastically twice a week for both. I started slowing down on PT exercise -- and all exercise after the Ativan/Belsomra/ReMeron mix, stopped completely after Restoril OD a year ago). My neck is thrust forward permanently. I can barely rotate it. It makes driving dangerous. It hurts all the time. I spend all my time lying down with my neck pushed forward. My back is hunched and I have scoliosis. My supportive muscles are gone and it doesn't rotate at all. It is just getting worse and worse by the day.
So get up, right? Salvage something? Do what you can, even though incontinent and in pain. Plenty of disabled people have this mindset. I am actively a huge factor in my decline at this point, obviously. It is pathological. I am relying on some fantasy of death even though I know suicide is actually so hard to make happen. Only the super lucky, resourceful and determined pull it off. I am without resources (read my post about my inability to get a gun (involuntary commitment makes it illegal), build a nitrogen set up ( the engineering plus the practicalities like being disabled and incontinent and broke, rhe time it takes, my husband worried about his own liability)). So I am not going to suddenly die. So at least don't make it worse -- which I have done time and time again. I cancelled my first hysteroscopy appointment because I was afraid of hyponatremia complications. So many things I have massively screwed up. I deserve some misery but not his. Nothing this bad.
I know how much worse I am making this by not moving at all. Or stretching. Or, for that matter, reading. Or trying to at least fill out a form, download a PDF app (which I cannot afford). Or talking to my mother.
Or, and this is the most painful thing of all, so much so that I can barely think about it, repairing what's left of my relationship with my son, the best and most truly special person I have ever known -- kind, brilliant, bighearted, super talented (music, writing, a talented for life). He was destined for a truly beautiful life and I ruined that. He was meant to marry young and have kids -- my grandkids -- and I ruined that. He has no real relationship now. His relationships will always be screwed up because of me. He is seriously depressed. I have destroyed him and us.
I have destroyed him emotionally -- he is so traumatized -- but also financially. Before we moved here, we had the money to pay off his student loans and help him generally. Now he is broke and a wanderer. He would have been stable now.He is essentially motherless. He hd surgery on his sinuses by himself this year. I wasn't there to nurse him like I did all thise years. When he tore his Achilles in college, I flew out, stayed for months and fed him, doing his laundry, driving him to appointments. I destroyed the most precious person on earth.
Before drugs, when I was severely depressed, I could still talk with him. When I just started the Remeron and Ativan and Belsomra craziness, I could still book us a vacation, hik with him, sing with hi, cuddle with him -- yes, even in his twenties he cuddled. He always held my hand in public up until I tanked completely. Before drugs, wil horses couldn't keep me from being there for him. I was a great mother. I livedcfor him sincevhe was born, I pampered him and nourished him and every waking oment of my lufe was devoted to loving him and giing him every opportunity i coyld. I took on extra work to pay for his first car. I cooked every meal, made him fresh organic, complete lunches every day of his life. Brought him tea in bed unril he moved out. Music lessons, swim lessons, anything he ever wanted. He was so so lucky. Until he wasn't. Until drugs changed me into a monster. A loser. The biggest f*ck up I have ever known or heard of. I own up to turning into a detestable nonhuman.
I still deserve imminent death, though. I have paid my dues. I still deserve avoiding my fate. I am willing to pay with my once-blessed life. But it doesn't work that way.
The SIADH makes basic procedures very dangerous and I am overdue for a hysteroscopy (post menopausal bleeding for two years, plus no pap because I have a stenotic cervix with botched cervical surgeries. High risk for cervical cancer because of HPV), colonoscopy. I can no longer get my every-other-year mri with contrast for breast cancer (at 25% risk, familial) because the contrast hurts the kidneys.
It makes the intense prolapse surgery I need done (5 hour risky surgery for incontinence) very dangerous.
It makes daily life a nightmare. I
drink out of a water bottle and can have only 1500 ml of fluid every 24 hours. Have to count every ml of water. No coffee, no tea, no kombucha. Nosmall comfort Renal panel every month.
I am on a diabetic diet now. But paradoxically I have to watch my protein intake because of kidney dysfunction. So SIADH, diabetes and kidney damage make eating a nightmare.
To continue the story: all of this has destroyed my relationship with husband an son. My husband moved us across country to a dream house we can't afford in an area we can't afford because he thought it would magically cure my depression. He made me sign practically under duress for it. I was in a psilocybin/Restoril fog. I came to my senses. I begged him for weeks to back out, knowing that losing our earnest money would be a drop in the bucket compared to what we would lose. The day he left for the airport, I got on my knees and begged him to back out. He refused.
I was right. We are now broke, in serious debt, and have to move back to the poor rural southern Midwest, where I have no healthcare. The irony is that I begged not to buy this place -- in the area I grew up and never wanted to leave -- and now I can't leave, I just can't. Even if I were healthy, moving back on its own would make me want to ctb myself. I lived in that sh*hole for 30 years and barely survived it (terrible things happened there, which I write about elsewhere, but mostly the NICU trauma of my newborn son who was misdiagnosed with epilepsy and was in the NICU for 19 days, put on phenobarbital, 2 spinal taps, heel pricks every hour, full body CT scan, head and chest x ray, sandpapered head for electrodes, no holding him, no breastfeeding. I went from 100% organic food while pregnant and did 100% natural childbirth to disaster and bottle feeding. He started life massively drugged, unheld in pain. He has had massive radiation to brand new DNA. He had a depressed traumatized mother-- it took me months to fully recover. I did, though -- without drugs My skin cancer was also misdiagnosed for years, leading to a much bigger tumor, much more disastrous reconstruction. The southern Midwest is dangerous for healthcare.). This alone keeps me pinned to my bed.
My husband has gone mad. Suffice it to say -- and read between the lines -- it has caused serious physical problems: broken nose (which, because the break was exactly on my reconstruction which is essentially big hole with graft in it and skin on top) led to nasal valve collapse, and obvious serious deformity. My nose now sags, is like putty, hurts and I can't breathe), broken back, (confirmed by orthopedist. The pushed-in tailbone -will jeopardize prolapse surgery and the lower discs caused nerve damage and shaking in my foot and ankle, twinging all the time.. if left untreated, which it has been because of everything else going on, will cause significant weakness and paralysis) hearing loss, worse tinnitus, damaged neck. Obviously I can't be more specific about direct harm here.
My gi problems are horrible. Went from being right as rain, regular with what the colonoscopist 10 years ago said was a "squeaky clean" colon to alternating severe constipation and bloody diarrhea. Green or clay colored stool. Foul smell pain. Gurgling 24 hours a day because of ruined motility.
I won't be able to see a gi dr this year because we are moving. For that matter, I won't have a nephrologist, PCP, gynecologist, urogynecologist, rheumatologist, not even a dentist. I was going to see a jaw surgeon for my severe TMJ here at a renowned TMJ center but now I won't be able to. I was going to have a new bite splint (mine is worn out and needed to be replaced years ago. That, plus the stress has my jaw so much worse, in constant pain and I have a crooked face -- just this year) made by that center but now I will be gone and can't afford a new one anyway. My teeth and gums are suffering from the lack of hydration because of fluid restriction and nutritional deficiencies like calcium. I had great teeth and gums before we moved here, before the fallout from drugs.
The lack of money -- we were solvent before drugs and thus crazy desperate move -- is destroying my health. I cannot get hearing aids. I cannot afford co pays. I cannot afford prescription sunglasses. I cannot afford a new mouth guard for TMJ. I ended up twice in an ambulance -- that's 5k right there. My credit card is almost maxed and I have a high limit. Before this move, there was nothing on it. It is ruining other basic things too. I can't afford new clothes for my new size -- I have lost 20 lbs. I have one pair of sneakers and one pair of winter boots. I have one nightgown and set of sheets. I cannot afford decent moisturizer. We really cannot even afford the food and gas we buy. Our washing machine is dying -- repair goes on credit card. Our car needs repair -- goes on credit card. Our new move will cost a fortune and we have no idea where we will rent. We were always homeowners before drugs.
All of this has been so traumatizing, making me more suicidal. My husband son involuntarily committed me, where I was restrained, cuffed to bed by 5 security guards (I have complex PTSD, whoch started when I was raped at 17, which is how I got the HPV, so more trauma), treated like a crazy criminal for 3 weeks, then given 6 rounds ( 12 seizures) of ECT.
ECT is an unmitigated disaster. I will write a post on it in detail to warn people to never agree to it. No way. . I see it as a direct heir of the drug domino effect. Drugs changed me, ruined me, diseased and disabled me. ECT is the worst of that inheritance. The pre-drug, severely depressed me would never have been committed. I would never have done ECT, never, and signed a three day notice to leave facility before it happened, but my husband said he would leave me if I didn't do it. I am completely dependent on him, financially and otherwise. He is now my 24/7 care provider and the health insurance is through him. He told me that if i did 6 rounds, he would help me plan to ctb. I did 6 rounds. He reneged.
ECT ruined my eyesight. It was already bad with Abilify. Now I have retinal problems -- full circle of light in both eyes, jagged flashing in the dar -- and severe PVD (posterior vitreous detachment; my floaters are so bad that it is like opening your eyes under water in a pond -- full of pond weed. It makes my retinas even worse and puts them in jeopardy. My eye dr tells me that even with corrected vision I will never see better than 20/30 again. Inow am a retina patient.
My memory is shot. I can't remember anything -- short or long term. I woke up each time not knowing where I was, barely who was.
I was supposed to have my rescheduled hysteroscopy three days after I was committed. Now I have to wait until June for it. His is downright dangerous. A possible delay in a cancer diagnosis, and because I have to have it before prolapse surgery, a definite delay in addressing my incontinence.
Drugs destroyed my relationships. Before drugs, as depressed as I was, I had solid relationships with my husband, son, brother an mother. Now I am so isolated. My husband and I would not b together anymore if he wasn't obligated to care for me (he admits that he is a significant reason why am in the shop I am in and therefore owes me at least this). We were so in love, best friends and thriving for so many decades. My son, who was my greatest joy and other best friend, who supports my dying, never picks up the phone, won't discuss my actual illnesses and other problems -- thinks the reason to ctb is untreatable depression but won't hear about howI got here. A basic gap. I can't see or talk to my beloved dying mother and brother who live near me because of that gap. They don't unerstand. My brother wants me to just put it all behind me (!) and if my mother saw me in this condition would die immediately which is why I haven't seen her. I have written about this in previous post if you are interested.
So I am desperately lonely and alienated. I was an affectionate, loved person before drugs. I loved nature ad birds before. I live for two more months in one of the best, prettiest parts of the U.S.: ocean, mountains, rivers, lakes, marshes.... now I can barely look out the window of this beautiful home and property because I am leaving it to go to one of the ugliest, poorest places in country. I can't even look around this batiful home. This place was never mine. Just a nightmare year in a gorgeous place.
Worst of all: drugs ruined my mind. Depression and insomnia didn't an doesn't help it. But drugs -- and the fallout from drugs -- are the real culprit. My executive function is gone. I am mentally disabled. I can't use a computer (just use phone) , can't do third grade math easily, can't get a new license. I can write and talk but I cannot actually exe ute task. I get confused just filling out basic forms or getting documents together.
It's true that I am pretty sure I have early stage dementia for a couple of years. But that didn't stop me from doing my father's estate, my mother's trust, durable power of attorney -- all in the early days of drugs, before the Restoril OD (I think that really made the decline so much worse)
Now, because of drugs, I will never get a proper diagnosis of dementia because severe psychotic depression diagnosis.... one neurologist in the fall took one look at that and said it would be impossible to differentiate, as the symptoms and effects are so similar ( again, I am severely depressed but not psychotic). I cannot get another brain scan ( I had one 10 months ago and it was fine) without the contrast hurting my kidneys.
A dementia diagnosis would have been immensely important. It would allow me the right to die, for which I would choose VSED , which is legal (or with more help from one of the organizations, I could maybe pull off nitrogen). It would give me back my family, I think, because they would be sympathetic. I think they would then help me with VSED. As it stands, I will never have a peaceful death.
Executive dysfunction (and eyesight) will make me stop driving. I will not pass a driver's license test back in that old place. I will need to get a government issued id. Who will do that for me? I have no other documents besides a passport, I cant make sense of the computer anymore.
My husband is old and in decline. We are already in financial ruin and dysfunctional. When he is gone, I won't have what it takes mentally to pay rent, go o drs and pay health insurance collect his insurance and pension, etc. I won't be able to getto the grocery store. There is no one to help me. My son does not have conservatorship of me. He doesnt have what it takes to come in, resources or skill set, to help. At least here I have another brother who, even though we don't speak, might be able to keep me off the streets. But there I have no one. Being a ward for the state would be my best option, but I wouldn't know what it takes executively.
I will likely be an old, blind, untreated diabetic, incontinent, demented, diseased, disabled person living on the streets in an extremely hot and humid horrible place (Southern Midwest) during global warming. The climate I am in ight now is perfect for me an is actually a designated location for climate change. This house will be worth a fortune some day. If only I could die in it tonight.
Psychiatric drugs and their fallout ruined me. Please, please use caution.
Every night I pray to die in my sleep. But I don't sleep.
Now, because the drugs have caused such havoc, I could've easily qualified in a few years for the right-to-die because of my resulting physical and cognitive illness. However *because of the drugs*, I am disqualified. It is an irony that I just can't accept.
It started with getting cancer (basal cell on my nose which had to be reconstructed. The dermatologist told me it was a wart-like virus in 2018. Every year after she said it was fine) at 54. I got depressed (agitation depression -- no appetite) and had brutal insomnia. Without exaggeration, sometimes I had zero to two hours of sleep for days. But although severely depressed, I was still me. I still had great executive function. Handled my dead father's estate, set up my mother's trust, arranged our move that I begged my husband not to make, etc.
This post is about all the drugs and their fallout for 2 1/2 years. It might serve as a cautionary tale. It is a horror story. I think it is really important to share, though, if it helps a younger person avoid this path. You will see that I bear a lot of responsibility here. I have really screwed up all on my own, drugs or no drugs. I did have mental health issues before drugs: depression, trauma, OCD, severe healthy anxiety. In addition, you will see that it is a story of not just the drugs and my own destructive ways, but the story of inept, terrible doctors, some of whom I believe crazy in their own right (the inpatient psychiatrists) with a pathological, power-driven mindset.
It is very, very long. It will probably never be read by anyone. But I think it's worth reading if you are considering drugs, or drugs aren't working for you but you are being coerced to try new ones.
I think I am also writing it all out in hopes that if I do get lucky and ctb, I could direct my son to this thread since he won't listen to my story. I need him to understand about the drugs. It is not my suicide note to him, which will be very different and just full of love and memories. No bitterness. He deserves better. And this narrative is extremely bitter.
My PCP prescribed Remeron 15mg -- my current psychiatrist said that was a strange first choice, gold standard being an SSRI, and Remeron being the wrong choice for my kind of depression. No effect except for some mild sedation, which gave me a couple of hours of sleep initially. He bumped me to 30 mg. No effect. Put me on Valium for insomnia. Switched me to Ativan, no taper. Helped somewhat but executive function started to deteriorate.
Months later, I saw a psychiatrist who was 10 minutes late. He was so odd, narcissistic, wildly inappropriate and prurient about my previous trauma of rape. He was also wildly patriarchal and spoke to my husband half the time. He had a huge picture of his children on the wall and said, when I told him about my newborn son' misdiagnosis and subsequent NICU trauma (read on for that trauma story)" Oh boy, they ruined him, I am so sorry, as you can see I am a parent too" and pointed to this picture ). He put me on Ambien which started my vision and memory problems: double vision. Stopped that, went back to Ativan.
My PCP switched me months later to Lexapro-- started my severe tinnitus and made me very dizzy. So he stopped that and he put me back on Remeron.
I saw a new, clueless psychiatrist where my real troubles began. She and the PCP had me on Remeron 30mg, Ativan 1 mg, and Belsomra 20mg-- all CNS depressants. I started to become a zombie, hardly moving, no longer jogging, maybe walking a mile or two, no shopping or cooking. More depressed than ever. Brain fog. Bowel problems started.
Put me on Lexapro again at a much higher dose, which gave me the start of my tinnitus. Stopped that. Put on Wellbutrin -- current psychiatrist says the exact wrong antidepressant for my kind of depression. It gave me much worse tinnitus, plus a rash so bad I was hospitalized for it -- it had been misdiagnosed three times as shingles. A long course of prednisone prescribed, made my bowels worse.
I asked this psychiatrist what she thought about psilocybin; she wholeheartedly endorsed it, saying it was my best chance to get better, that it would put a" fresh layer of snow" on my brain rather than just "patching up" with antidepressants. She thought this would be much better than ketamine which I could have done because it might make my tinnitus worse. I ended up a few months later taking it. I would never have taken it without her enthusiastic endorsement. It did not help but made me relive past trauma. It retraumatized me and I threw up for two days. My son believes it was way too high a dose and did something really bad to my brain.
I am not sure. I was still able to book an Airbnb, visit my mother -- and look at a house my husband wanted to buy back home. He was desperate to get me out of the miserable Midwestern town that depressed me in the first place. But he had me agree to buying it three days after my mushroom trip. He was very forceful, having me sign initial paperwork. I was very suggestible and physically sick and it was all a dream. I agreed to buying this house and moving. I came to my senses about it soon after but it was too late. More on this fatal move soon.
I include psilocybin as a psychiatric drug. It should never have been given to me. I had several online meetings with this licensed therapist and I gave her a detailed account of my mental health conditions. In hindsight, I should never have taken it.
Back to the Midwest. I was still not sleeping; she prescribed gabapentin, hydroxyzine, etc. Then she put me on 45mg of Restoril, 15mg over FDA allowance. I took it one night, knew it was way too much because I couldn't get up. Took 30mg the next night -- experienced OD. Couldn't move, talk, or even squeeze my husband's hand to respond. Didn't leave couch for 2 days. My neck started wobbling.
It changed me for good. No longer felt like myself, no longer felt human.
Decided to stop everything. They wanted to try Cymbalta. Maybe I should hae tried, but forget it. I was done. At least voluntarily. Began weaning off Ativan. Psychiatrist put me on Valium to help with taper -- had paradoxical effects. No sleep for days. My agitation and fear and feeling of despair were through the roof. (before you wonder, I am not bipolar. Even all these terrible psychiatrists I have unfortunately have had to deal with ( outpatient and inpatient) and my current psychiatrist (nice man but still a psychiatrist, which gives him a drug mindset and a closed--off predetermined mindset) agree that I have never had mania, never exhibited a single manic trait. I have never been impulsive, I definitely don't have delusions of grandeur. I was always down, down, down. I didn't have decreased need for sleep -- even now I feel every lost hour. Etc. The first inpatient dr gave me a psychotic depression diagnosis and they all run with that. Totally false but at least they know it's not mania.) Valium gave me essential tremor. The withdrawal from Ativan made me lose bowel control. My cognition worsened.
Benzodiazepines should be criminalized, in my opinion. They started my ruin. And yet that psychiatrist gave me 90 days' supply of Ativan, with refill when we moved.
We moved. New psychiatrist put me on Lexapro (said I ahpuld live with the tinnitus and that this was my ladt chance to get better) and Seroquel. Seroquel caused my metabolism to change and gave me prediabetes. It is now masked diabetes, masked because I don't eat much. But my random glucose is still sky high and my last A1C was close to 6. I have to wait to get into an endocrinologist, months from now. My PCP is never available and she says m A1C has to be higher for her to refer me to an endocrinologist. It worsened my liver function. It caused SIADH (separate post about this being a factor of why I need to ctb, but I write about it a bit here because for older people it is an uncommon but recognized side effect caused by psychiatric drugs), was immediately hospitalized for acute hyponatremia (120) which caused heart arrhythmia ( I have PVCs all the time now) likely mild brain damage and near delirium. If I hadn't got to the hospital wjen I did, I would be dead. I dearly wish I hadn't gone. I apparently in this state told nurse I hoped I wouldn't wake up.
That's when they put me in psych ward for 2 weeks, gave me Abilify which worsened my myopia, put me on 60mg of Prozac, making hyponatremia worse. They put me on clonazepam, which as way stronger than Ativan and made me totally out of it. And of course didn't help me sleep. Received psychotic depression diagnosis -- have never had a psychotic moment in my life. This diagnosis itself is bad healthcare. No one -- doctors, family -- believes me anymore. Plus, it prohibits me from right to die, which I now need and for which I will qualify soon.
Stopped Prozac as soon as I got out to preserve my brain, bone (hyponatremia causes brain damage and osteoporosis) and most of all kidneys. Hyponatremia -- it was acute and now chronic-- damages the kidneys. I now am a lifelong kidney patient. SIADH is so restrictive, leading to severe nutritional deficiencies. Stopped the eye-destroying Abilify and the new psychiatrist thought I should quit clonazepam -- no taper again -- and go right back on Ativan. All this switching with weaning is so, so bad for the brain. No doctor tried or even warned me about it. Just hans it put like candy. By the time I knew this constant switching without tapering was terrible but I also knew what PAWS (prtroacted withdrawal syndrome)did to me. PAWS alone is enough for a lifetime. PAWS alone will make a person want to ctb.
The only drug I have been on since is Ativan. I went back on it -- not because it works but because after three years of dependence, my body couldn't handle withdrawal. Benzos have destroyed my gut biome, as does SIADH. It is such a restrictive diet that it leads to nutritional deficiencies. No veggie-packed soy smoothies, no coffee, no fermented foods that all help gut biome.
So even though I am mostly off drugs, in a way this is when my real troubles began. The fallout from them is extraordinary.
The zombification led to an extremely sedentary life. I am basically bed- and house -bound. I am this way both because of physical limitations (pain, incontinence, no prescription sunglasses, etc) but mostly emotional. My devastation is keeping me from moving. I am paranoid about the sun because even when I coat my nose with sunscreen, washing it off makes my nasal valve collapse worse. A wide- brimmed hat isn't enough. I also have had other pre skin cancers removed and I am so anxious about the sun now.
It is also so beautiful here and it causes me such pain to be here, knowing I have to leave it. I know this is extreme. I am also socially dysfunctional. I was a social person once, greeted everyone, made friends easily. I am now agoraphobic, which I have read is a side effect of benzos. I am also now so self conscious about my nose (read below about why it became further deformed) and my hunched back and neck ( again keep reading to see what happened to them).
This frozen state contributes to my muscle loss, osteoporosis, arthritis ( really bad hips) malnutrition (I can no longer shop or cook or myself), cognitive loss. My heart and lungs are like an old lady's. I have had little vitamin D from sunlight in 2 1/2 years. My neck and back are so weak. I already had a bad weak arthritic neck and back (I was in PT for years very enthusiastically twice a week for both. I started slowing down on PT exercise -- and all exercise after the Ativan/Belsomra/ReMeron mix, stopped completely after Restoril OD a year ago). My neck is thrust forward permanently. I can barely rotate it. It makes driving dangerous. It hurts all the time. I spend all my time lying down with my neck pushed forward. My back is hunched and I have scoliosis. My supportive muscles are gone and it doesn't rotate at all. It is just getting worse and worse by the day.
So get up, right? Salvage something? Do what you can, even though incontinent and in pain. Plenty of disabled people have this mindset. I am actively a huge factor in my decline at this point, obviously. It is pathological. I am relying on some fantasy of death even though I know suicide is actually so hard to make happen. Only the super lucky, resourceful and determined pull it off. I am without resources (read my post about my inability to get a gun (involuntary commitment makes it illegal), build a nitrogen set up ( the engineering plus the practicalities like being disabled and incontinent and broke, rhe time it takes, my husband worried about his own liability)). So I am not going to suddenly die. So at least don't make it worse -- which I have done time and time again. I cancelled my first hysteroscopy appointment because I was afraid of hyponatremia complications. So many things I have massively screwed up. I deserve some misery but not his. Nothing this bad.
I know how much worse I am making this by not moving at all. Or stretching. Or, for that matter, reading. Or trying to at least fill out a form, download a PDF app (which I cannot afford). Or talking to my mother.
Or, and this is the most painful thing of all, so much so that I can barely think about it, repairing what's left of my relationship with my son, the best and most truly special person I have ever known -- kind, brilliant, bighearted, super talented (music, writing, a talented for life). He was destined for a truly beautiful life and I ruined that. He was meant to marry young and have kids -- my grandkids -- and I ruined that. He has no real relationship now. His relationships will always be screwed up because of me. He is seriously depressed. I have destroyed him and us.
I have destroyed him emotionally -- he is so traumatized -- but also financially. Before we moved here, we had the money to pay off his student loans and help him generally. Now he is broke and a wanderer. He would have been stable now.He is essentially motherless. He hd surgery on his sinuses by himself this year. I wasn't there to nurse him like I did all thise years. When he tore his Achilles in college, I flew out, stayed for months and fed him, doing his laundry, driving him to appointments. I destroyed the most precious person on earth.
Before drugs, when I was severely depressed, I could still talk with him. When I just started the Remeron and Ativan and Belsomra craziness, I could still book us a vacation, hik with him, sing with hi, cuddle with him -- yes, even in his twenties he cuddled. He always held my hand in public up until I tanked completely. Before drugs, wil horses couldn't keep me from being there for him. I was a great mother. I livedcfor him sincevhe was born, I pampered him and nourished him and every waking oment of my lufe was devoted to loving him and giing him every opportunity i coyld. I took on extra work to pay for his first car. I cooked every meal, made him fresh organic, complete lunches every day of his life. Brought him tea in bed unril he moved out. Music lessons, swim lessons, anything he ever wanted. He was so so lucky. Until he wasn't. Until drugs changed me into a monster. A loser. The biggest f*ck up I have ever known or heard of. I own up to turning into a detestable nonhuman.
I still deserve imminent death, though. I have paid my dues. I still deserve avoiding my fate. I am willing to pay with my once-blessed life. But it doesn't work that way.
The SIADH makes basic procedures very dangerous and I am overdue for a hysteroscopy (post menopausal bleeding for two years, plus no pap because I have a stenotic cervix with botched cervical surgeries. High risk for cervical cancer because of HPV), colonoscopy. I can no longer get my every-other-year mri with contrast for breast cancer (at 25% risk, familial) because the contrast hurts the kidneys.
It makes the intense prolapse surgery I need done (5 hour risky surgery for incontinence) very dangerous.
It makes daily life a nightmare. I
drink out of a water bottle and can have only 1500 ml of fluid every 24 hours. Have to count every ml of water. No coffee, no tea, no kombucha. Nosmall comfort Renal panel every month.
I am on a diabetic diet now. But paradoxically I have to watch my protein intake because of kidney dysfunction. So SIADH, diabetes and kidney damage make eating a nightmare.
To continue the story: all of this has destroyed my relationship with husband an son. My husband moved us across country to a dream house we can't afford in an area we can't afford because he thought it would magically cure my depression. He made me sign practically under duress for it. I was in a psilocybin/Restoril fog. I came to my senses. I begged him for weeks to back out, knowing that losing our earnest money would be a drop in the bucket compared to what we would lose. The day he left for the airport, I got on my knees and begged him to back out. He refused.
I was right. We are now broke, in serious debt, and have to move back to the poor rural southern Midwest, where I have no healthcare. The irony is that I begged not to buy this place -- in the area I grew up and never wanted to leave -- and now I can't leave, I just can't. Even if I were healthy, moving back on its own would make me want to ctb myself. I lived in that sh*hole for 30 years and barely survived it (terrible things happened there, which I write about elsewhere, but mostly the NICU trauma of my newborn son who was misdiagnosed with epilepsy and was in the NICU for 19 days, put on phenobarbital, 2 spinal taps, heel pricks every hour, full body CT scan, head and chest x ray, sandpapered head for electrodes, no holding him, no breastfeeding. I went from 100% organic food while pregnant and did 100% natural childbirth to disaster and bottle feeding. He started life massively drugged, unheld in pain. He has had massive radiation to brand new DNA. He had a depressed traumatized mother-- it took me months to fully recover. I did, though -- without drugs My skin cancer was also misdiagnosed for years, leading to a much bigger tumor, much more disastrous reconstruction. The southern Midwest is dangerous for healthcare.). This alone keeps me pinned to my bed.
My husband has gone mad. Suffice it to say -- and read between the lines -- it has caused serious physical problems: broken nose (which, because the break was exactly on my reconstruction which is essentially big hole with graft in it and skin on top) led to nasal valve collapse, and obvious serious deformity. My nose now sags, is like putty, hurts and I can't breathe), broken back, (confirmed by orthopedist. The pushed-in tailbone -will jeopardize prolapse surgery and the lower discs caused nerve damage and shaking in my foot and ankle, twinging all the time.. if left untreated, which it has been because of everything else going on, will cause significant weakness and paralysis) hearing loss, worse tinnitus, damaged neck. Obviously I can't be more specific about direct harm here.
My gi problems are horrible. Went from being right as rain, regular with what the colonoscopist 10 years ago said was a "squeaky clean" colon to alternating severe constipation and bloody diarrhea. Green or clay colored stool. Foul smell pain. Gurgling 24 hours a day because of ruined motility.
I won't be able to see a gi dr this year because we are moving. For that matter, I won't have a nephrologist, PCP, gynecologist, urogynecologist, rheumatologist, not even a dentist. I was going to see a jaw surgeon for my severe TMJ here at a renowned TMJ center but now I won't be able to. I was going to have a new bite splint (mine is worn out and needed to be replaced years ago. That, plus the stress has my jaw so much worse, in constant pain and I have a crooked face -- just this year) made by that center but now I will be gone and can't afford a new one anyway. My teeth and gums are suffering from the lack of hydration because of fluid restriction and nutritional deficiencies like calcium. I had great teeth and gums before we moved here, before the fallout from drugs.
The lack of money -- we were solvent before drugs and thus crazy desperate move -- is destroying my health. I cannot get hearing aids. I cannot afford co pays. I cannot afford prescription sunglasses. I cannot afford a new mouth guard for TMJ. I ended up twice in an ambulance -- that's 5k right there. My credit card is almost maxed and I have a high limit. Before this move, there was nothing on it. It is ruining other basic things too. I can't afford new clothes for my new size -- I have lost 20 lbs. I have one pair of sneakers and one pair of winter boots. I have one nightgown and set of sheets. I cannot afford decent moisturizer. We really cannot even afford the food and gas we buy. Our washing machine is dying -- repair goes on credit card. Our car needs repair -- goes on credit card. Our new move will cost a fortune and we have no idea where we will rent. We were always homeowners before drugs.
All of this has been so traumatizing, making me more suicidal. My husband son involuntarily committed me, where I was restrained, cuffed to bed by 5 security guards (I have complex PTSD, whoch started when I was raped at 17, which is how I got the HPV, so more trauma), treated like a crazy criminal for 3 weeks, then given 6 rounds ( 12 seizures) of ECT.
ECT is an unmitigated disaster. I will write a post on it in detail to warn people to never agree to it. No way. . I see it as a direct heir of the drug domino effect. Drugs changed me, ruined me, diseased and disabled me. ECT is the worst of that inheritance. The pre-drug, severely depressed me would never have been committed. I would never have done ECT, never, and signed a three day notice to leave facility before it happened, but my husband said he would leave me if I didn't do it. I am completely dependent on him, financially and otherwise. He is now my 24/7 care provider and the health insurance is through him. He told me that if i did 6 rounds, he would help me plan to ctb. I did 6 rounds. He reneged.
ECT ruined my eyesight. It was already bad with Abilify. Now I have retinal problems -- full circle of light in both eyes, jagged flashing in the dar -- and severe PVD (posterior vitreous detachment; my floaters are so bad that it is like opening your eyes under water in a pond -- full of pond weed. It makes my retinas even worse and puts them in jeopardy. My eye dr tells me that even with corrected vision I will never see better than 20/30 again. Inow am a retina patient.
My memory is shot. I can't remember anything -- short or long term. I woke up each time not knowing where I was, barely who was.
I was supposed to have my rescheduled hysteroscopy three days after I was committed. Now I have to wait until June for it. His is downright dangerous. A possible delay in a cancer diagnosis, and because I have to have it before prolapse surgery, a definite delay in addressing my incontinence.
Drugs destroyed my relationships. Before drugs, as depressed as I was, I had solid relationships with my husband, son, brother an mother. Now I am so isolated. My husband and I would not b together anymore if he wasn't obligated to care for me (he admits that he is a significant reason why am in the shop I am in and therefore owes me at least this). We were so in love, best friends and thriving for so many decades. My son, who was my greatest joy and other best friend, who supports my dying, never picks up the phone, won't discuss my actual illnesses and other problems -- thinks the reason to ctb is untreatable depression but won't hear about howI got here. A basic gap. I can't see or talk to my beloved dying mother and brother who live near me because of that gap. They don't unerstand. My brother wants me to just put it all behind me (!) and if my mother saw me in this condition would die immediately which is why I haven't seen her. I have written about this in previous post if you are interested.
So I am desperately lonely and alienated. I was an affectionate, loved person before drugs. I loved nature ad birds before. I live for two more months in one of the best, prettiest parts of the U.S.: ocean, mountains, rivers, lakes, marshes.... now I can barely look out the window of this beautiful home and property because I am leaving it to go to one of the ugliest, poorest places in country. I can't even look around this batiful home. This place was never mine. Just a nightmare year in a gorgeous place.
Worst of all: drugs ruined my mind. Depression and insomnia didn't an doesn't help it. But drugs -- and the fallout from drugs -- are the real culprit. My executive function is gone. I am mentally disabled. I can't use a computer (just use phone) , can't do third grade math easily, can't get a new license. I can write and talk but I cannot actually exe ute task. I get confused just filling out basic forms or getting documents together.
It's true that I am pretty sure I have early stage dementia for a couple of years. But that didn't stop me from doing my father's estate, my mother's trust, durable power of attorney -- all in the early days of drugs, before the Restoril OD (I think that really made the decline so much worse)
Now, because of drugs, I will never get a proper diagnosis of dementia because severe psychotic depression diagnosis.... one neurologist in the fall took one look at that and said it would be impossible to differentiate, as the symptoms and effects are so similar ( again, I am severely depressed but not psychotic). I cannot get another brain scan ( I had one 10 months ago and it was fine) without the contrast hurting my kidneys.
A dementia diagnosis would have been immensely important. It would allow me the right to die, for which I would choose VSED , which is legal (or with more help from one of the organizations, I could maybe pull off nitrogen). It would give me back my family, I think, because they would be sympathetic. I think they would then help me with VSED. As it stands, I will never have a peaceful death.
Executive dysfunction (and eyesight) will make me stop driving. I will not pass a driver's license test back in that old place. I will need to get a government issued id. Who will do that for me? I have no other documents besides a passport, I cant make sense of the computer anymore.
My husband is old and in decline. We are already in financial ruin and dysfunctional. When he is gone, I won't have what it takes mentally to pay rent, go o drs and pay health insurance collect his insurance and pension, etc. I won't be able to getto the grocery store. There is no one to help me. My son does not have conservatorship of me. He doesnt have what it takes to come in, resources or skill set, to help. At least here I have another brother who, even though we don't speak, might be able to keep me off the streets. But there I have no one. Being a ward for the state would be my best option, but I wouldn't know what it takes executively.
I will likely be an old, blind, untreated diabetic, incontinent, demented, diseased, disabled person living on the streets in an extremely hot and humid horrible place (Southern Midwest) during global warming. The climate I am in ight now is perfect for me an is actually a designated location for climate change. This house will be worth a fortune some day. If only I could die in it tonight.
Psychiatric drugs and their fallout ruined me. Please, please use caution.
Every night I pray to die in my sleep. But I don't sleep.
