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#Xyrem
heysawbones · 5 months
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Let's Talk about Xyrem.
Xyrem ("oral sodium oxybate" or the sodium salt of gamma-hydroxybutyrate) is used in the treatment of narcolepsy, as well as (sometimes) idiopathic hypersomnia. Even if you don't have narcolepsy or any related conditions, you may find this run-down interesting. Here's why:
Gamma-hydroxybutyrate is roofies. That's right. Date rape drug. Right here.
The drug is so tightly controlled that there is one pharmacy in all of the United States that can fill it. Doctors must be approved and participate in a special program to even prescribe it.
Nobody really knows how it works in the treatment of narcolepsy.
I was prescribed Xyrem quite some time ago - at this point, nearly a year back. It took six-plus months of insurance, doctor's office, and central pharmacy wrangling to get the drug to my door. The whole time, I wondered: what should I expect from Xyrem? How do I know if it's working? How do I know if it's not working? What's it like? Lists of side effects and contraindications are readily available online, but I couldn't find a single detailed testimonial. This bothered me.
I've been on Xyrem for about a month and a half now. Here's what I can tell you about it.
You have to wake up at night to take a drug that's meant to improve your sleep. Everybody I explained this to found it funny. The standard practice is to split your dose in two - to take one half at bed, and the other half two to four hours later. If you're on Jazz Pharmaceuticals brand Xyrem and not the generic, they send you a tiny little alarm clock with a light on it to facilitate this. I have never needed it.
It takes 3 weeks to titrate up to the "full" dose, which is also the maximum dose. From there, you can titrate back down to a lower dose if you're experiencing unpleasant side effects. I'm in the process of doing this myself.
It doesn't necessarily knock you out. From the way the drug is described, one might get the impression that the moment it kicks in, you're going to be unconscious. I didn't find this to be the case. Your mileage may vary; I don't always fall asleep at all on the first dose, but it does at least get me sleepy enough to fall asleep on the second.
You have an unusual amount of agency in how you take Xyrem. This surprised me, especially given how tightly controlled possession of this drug is. For example, I metabolize Xyrem really fast. If I take it in two doses, I will sleep a maximum of 6 hours. I take the same amount of medicine and split it into three doses instead to compensate for how fast I metabolize it. That way, I'm more likely to sleep about 8 hours. This isn't just accepted, it's encouraged. You can even take a bigger dose first and a smaller one second, or vice-versa. The only hard and fast rule is: do not go over the max dose.
If you take it with alcohol, or within 4-6 hours of alcohol, it could kill you. A lot of drugs warn you not to take them with alcohol. I cannot stress enough that if you have ignored that warning in the past: do not ignore it here. Do not. Xyrem is a powerful CNS depressant. Alcohol is a CNS depressant. It really can kill you.
It works(?) Like many drugs that act on the brain, nobody is really sure how Xyrem works. It doesn't affect the most common (known) cause of narcolepsy (a lack of orexin/hypocretin). It's theorized that the drug acts on GABA receptors in a way that "consolidates" the fragmented sleep architecture of narcolepsy.
Narcolepsy can be thought of as an autoimmune disorder of sleep architecture. The sleep architecture of a narcoleptic is irregular, both within itself and from night to night. People with narcolepsy tend to have less of the deep sleep stages than they should. Narcoleptics also have a high percentage of stage 1 (light) and REM sleep. It's theorized that excessive REM occurs because it is of poor quality/does not serve its intended function, so the brain spams REM in an attempt to compensate. A diagnostic trait of narcolepsy is the ability to enter REM within 8 minutes of falling asleep - if sleep architecture is normal, this does not occur. While not all people with narcolepsy have cataplexy, cataplexy itself is actually REM intrusion into waking life. The narcoleptic brain is that screwed up about REM. Xyrem appears to regulate shifts between sleep stages and reduce the nightly percentage of REM sleep. I used to dream nightly. Subjectively, I do not dream at all on Xyrem.
The only difference between Xyrem and Xywav is salt. A full 9g dose of Xyrem contains 1,640mg of sodium. The maximum sodium intake recommended by the American Heart Association is 2,300mg. One of the few things I saw said about Xyrem prior to taking it was that it was disgustingly salty. It is very, very salty. I don't mind it, though. I've seen it said that Xywav tastes much worse, but I can't attest to that.
Subjective experience
Xyrem comes Priority Air Mail in a sizable cardboard box. An adult with ID must be present to sign for it. The first month's prescription comes with a light-up alarm clock. This kit and all subsequent kits come with:
The medicine, in however many bottles are required
A number of syringes, marked with common doses
A number of pill bottles
You put water in the pill bottles. They tell you to put about 60ml, but as far as I can tell, this is to make the saltiness tolerable. I made a little game of this - I try to put the same amount of water in each pill bottle, gauged by nothing but sound. I've gotten pretty good at this. I have my nightly dose split 3 ways. After adding the drug to the water, I close each bottle and swirl it a bit. I don't know if this actually does anything.
Xyrem works best if you're already tired when you take it. Hilariously, I have ADHD in addition to narcolepsy. Nighttime sleepiness isn't a thing I Do naturally. Consequently, the first dose of Xyrem only puts me to sleep about half the time, and it takes a while even when it does. I know myself well enough to know that if I wait until I'm actually "sleep for the night" tired to take it, I might be up until 3 or 4 AM. Instead, I take the first dose at around 11 PM. Even if it doesn't put me to sleep, it DOES make me sleepy enough that the dose I take 2-3 hours later will definitely work.
I was very careful to set alarms the first week or so of taking Xyrem, but I've never needed them. For reasons that are unclear to me, I always wake up when Xyrem is fully metabolized. Without more Xyrem, there is no urge to go back to sleep. When I've run out of doses for the night, I'm up for the rest of the day. There's no napping.
Some people have pretty nasty side effects with Xyrem. Headache and nausea are the most common. I had both of those, once each. The headache lasted all day but was otherwise unremarkable; the nausea was genuinely awful. The only persistent side effect I have, is tremors.
While I was waiting for Xyrem, my sleep specialist put me on Adderall. Nobody would prescribe this for ADHD, but you'll do it for narcolepsy? Sure, whatever I'll take it. I mention this because I thought it was possible that Adderall was causing tremors. I ran a little experiment: I took Xyrem but no Adderall one day and still had tremors. I took Adderall, but no Xyrem the night before, and the tremors subsided. It's definitely the Xyrem. While this is a known possible side effect, I can't find any information on how or why Xyrem, a CNS depressant, would cause something that seems very much the opposite of a depressed central nervous system. I am currently titrating back down from the max dose in an attempt to see if a lower dose will mitigate the tremors. If that doesn't work, I'm not... entirely sure what to do. Xyrem is a weird drug. It's strange not to dream at all; it's strange to wake up twice a night and still get better sleep than I ever have. Executive function has improved considerably, given that both neurological issues that cause executive dysfunction are being treated. Still: the tremors are, I will not lie, distressing. Not as bad as they were on Wellbutrin, which I was forced to discontinue! But - disruptive and distressing, nonetheless. I'm hoping that the tremors will stop eventually, or that dose adjustment will help.
Overall: would recommend if you have narcolepsy. You wouldn't think that a drug that obligates you to wake up multiple times a night could improve your sleep! Well, bucko, if your sleep architecture is already so disordered that you have narcolepsy: it can.
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barking-barkive · 2 years
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alright lads here's to hoping i don't join the ranks of r/ambien
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fortunatelyfresco · 2 years
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i have completed Two Tasks that contained many smaller, secret tasks, so that's nice, but also i have to be awake for a cardiology appointment in uhhh four and a half hours
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negreaux · 1 month
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you ever been prescribed roofies?
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swampgallows · 2 months
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my ex gf had narcolepsy so i was in some of the narcolepsy groups she was in and one of her friends in that group was talking about how she couldn't legally marry her husband or she'd lose her medication. some people w narcolepsy are able to be prescribed xyrem: normally a schedule 1 drug (GHB) but with the addition of salt becomes a new compound and therefore a schedule 3 "orphan drug", as the sole medicinal use it has is for treating narcolepsy. and since it's an "orphan drug" it's prescribed only in this very specific instance, meaning they dont make a lot of money off of it. so you know how they compensate for that? they charge 3000 fucking dollars a month. it might even be more now, since this was ten years ago. but luckily xyrem has an accessibility program! yes, if you are Eligible they will dock your monthly prescription fee into the manageable hundreds. and how do you remain Eligible? by filling out their survey or providing proof of having SSI. you see, if she were able to marry her husband, she would have a "dual income", which means she'd either be kicked off SSI or ineligible for xyrem's discount, since she could clearly "afford" to pay the difference. so she had the "option" of either getting medication that allowed her a semblance of a typical life, with rejuvenating sleep and daytime wakefulness, but she could not have a job nor marry the man who should be her husband. or, she marries her husband and attempts to reenter the workforce but has to opt for a much less effective and more harsh alternative medication, most likely Desoxyn (which is methamphetamine. not "an" amphetamine like adderall. Methamphetamine.) which does not provide restful sleep but instead prolongs wakefulness. the lack of restful sleep is what results in the daytime sleepiness of narcolepsy, so the better treatment is to extend the stage 2 of sleep to allow for rest, not to take a tired person and medically keep them awake.
but yeah at least she gets her paltry 2k of funny money from the gubmint right
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crimson-kas · 11 months
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The Nightmare. My fascination with this painting stems from the theory that it is a depiction of sleep paralysis, which I have episodes of from time to time. It’s a horrifying experience accompanied by hallucinations. When I was a child, I thought our house was possessed by demons because of it. Since I’ve started taking XYREM for narcolepsy, however, I’ve had fewer episodes, which is a relief.
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fettesans · 5 months
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Left, photograph by Jakes Walters, from the editorial Protection Racket, a portrait of Richard D. James / Aphex Twin, for The Wire, November 2003. Via. Right, Christoph Meier, untitled, 2022, refractory clay, glazed, horse hair, variable dimensions. Via.
See also, Joan Jonas x (La) Horde.
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Some patients can have vivid and detailed sexual hallucinations during anesthesia with sedative-hypnotic drugs like propofol, midazolam, diazepam and nitrous oxide. Some make suggestive or sexual comments or act out, such as grabbing or kissing medical professionals or touching themselves in a sexual way. Others awaken erroneously believing they were sexually assaulted. Why does this happen?
Doctors have long known that sedative-hypnotic drugs, which slow down brain activity to induce calm or sleep, can affect a patient’s perception of reality. A 1984 review of the drugs midazolam, ketamine and thiopental found that 18% of patients receiving anesthesia for a dental or medical procedure had a hard time distinguishing reality from fantasy during and shortly after administration. Similarly, a 1980 study found that around 14% of patients report some sexual dreaming or arousal while under anesthesia. It’s no surprise that together these two features of anesthesia could sometimes manifest in sexual hallucinations. (...)
While we reviewed all published cases of sexual hallucinations in the medical literature, the actual incidence of anesthesia-induced sexual hallucinations remains unknown. Given the decades that have passed since the first reported cases, more work needs to be done. Data from a very large sample size of patients will be required to understand the prevalence of sexual hallucinations under anesthesia. However, drug companies are reluctant to spend money on research that may show that their drugs cause adverse side effects.
Finally, though we limited our review to reports of sexual hallucinations during anesthesia, millions of Americans use other prescription sedative-hypnotic drugs. Benzodiazepines like alprazolam (Xanax) and temazepam (Restoril) are used to treat anxiety and induce sleep. Z-drugs like zolpidem (Ambien) and eszopiclone (Lunesta) as well as suvorexant (Belsomra) and sodium oxybate (Xyrem) are also used to induce sleep. Opioids like morphine and oxycodone and gabapentinoids like gabapentin (Neurontin) and pregabalin (Lyrica) are used to treat pain. Muscle relaxers like carisoprodol (Soma) and cyclobenzaprine (Flexeril) are used for muscle spasms. All of these drugs have had reported cases of patients experiencing hallucinations while taking them.
Melody White and C. Michael White, from Scientists raise the alarm about vivid sexual hallucinations under anesthesia, for PsyPost, October 28, 2023.
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Hair does not attain relic status until it is removed from the head. The act of cutting creates a literal and mystical separation between hair and body; it is a rite by which the hair is transformed into personal relic and a model of remembrance. The hair’s cut edge represents the transition from natural artefact to cultural relic, when, Oliver says ‘the present presence of the body is anticipated as a future absence.’
Karen Bachmann, from The Power of Hair as Human Relic in Mourning Jewelry, Death: A Graveside Companion, edited by Joanna Ebenstein, 2017. Via.
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softshirringsound · 1 year
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I’ve had four (4) different health insurance companies since I started Xyrem and now it’s officially half of them denied covering Xyrem after multiple appeals and half of them approved Xyrem after multiple appeals! Why!!!! I’ve had the same doctor, same symptoms and have only done one sleep study in 2015 and yet two said okay fine and two said hell no. This most recent insurance said they approved because while I didn’t get a positive result in my sleep study, I have symptoms that aren’t well enough controlled by stimulants alone. That’s exactly my doctor’s reasoning too, but why TF would only half agree??
My timeline:
United healthcare: okay fine
Cigna: no
BCBS: no
Aetna: okay fine
I’m glad Aetna covers it but why do I have to keep going through this?!
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samtheflamingomain · 2 years
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hey so narcolepsy is incurable but it’s not untreatable and it’s not hopeless. hows your sleeping schedule? because having a regular sleep schedule, getting more sleep in general, and scheduling daytime naps can work wonders. and if you’ve already tried every kind of stimulant without much effect then there’s always xyrem to get uninterrupted sleep at night.
Thanks for the message :)
I have idiopathic hypersomnia, which is vaguely in the "narcolepsy" family, but a lot of meds that work for Narcolepsy Type 1 don't work on 2 or IH. I actually have a fantastic sleeping pill that knocks me right out and keeps me out for anywhere from 9-14h. Still just as tired waking up unfortunately.
I have made a few attempts at integrating napping, but I find coming out of them a pain in the ass. I can get up in the morning fairly easily but not naps.
Honestly, until Xywav comes to Canada, all I can really do is speed-date my way through all the stimulants hoping to find The One.
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tussive · 1 month
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It's so funny how like, the perception of something can grow greater than the reality of it. Specifically I'm thinking about the perception of GHB being used as a date rape drug (there's little evidence it's ever been significantly used as a date rape drug) but because of the perception of it as such, the prescription GHB, Xyrem, is now highly controlled. But obviously this happens to other things too other than just drugs.
idk it's just goofy. People really just believe what they want to.
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heysawbones · 7 months
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THRILLING XYREM UPDATE!
The initial dose is too low for me, lmao. I am too experienced of a sleep-problem haver. You’re expected to fall asleep within 5-30 minutes, generally. I didn’t fall asleep until it was time for the second dose, which did knock me out.
This is a drug that has to be titrated up to its therapeutic dose, so we’ll see how that goes. I intended to do a write-up on the experience because there are too few of them out there. I wanted one before I started taking this drug. It looks like I’ll have to wait until I’m sure the drug is at a therapeutic dose, however.
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aldridgewilladsen18 · 2 months
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The True Story Behind Best Place To Buy Modafinil
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However, Zopiclone is a form sleeping tablet that's used for treating insomnia and known as Z drugs. ‘The only drug for narcolepsy is Xyrem though it is only formally licensed for treating adults. Solvay subsequently offered the drug to Abbott Laboratories , which spun off its branded drug business in 2013 into what is now AbbVie. Five years of rigorous research resulted in approval and sale of Modafinil, as Provigil, as a treatment for narcolepsy and obstructive sleep apnea. Modafinil, model title Provigil, is a wakefulness-selling drug used for remedy of disorders resembling narcolepsy, shift work sleep disorder, and excessive daytime sleepiness associated with obstructive sleep apnea. Formally offered under where buy modafinil , Provigil, modafinil is a prescription drug accessible in a number of international locations. 1 hour), as Adrafinil needs to be metabolized into Modafinil in the liver. On common, the individuals who took Modafinil had slower reaction times and an impaired means to complete the sentences in a well timed method, compared with those that took the placebo, in keeping with the examine revealed Nov. 12 in the journal PLOS ONE. Most sufferers will fall into deep REM sleep inside 5 minutes - in comparison with forty minutes the typical person.
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bizworldinsights · 3 months
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 Narcolepsy 
The global narcolepsy market, valued at US$ 1.8 billion in 2019, revolves around a sleep disorder characterized by excessive sleepiness and occasional hallucinations. Affecting approximately 1 in 2000 individuals, narcolepsy presents a significant challenge as there is currently no cure. However, various effective medications and behavioral treatments are employed to enhance the quality of life for affected individuals, particularly addressing symptoms like cataplexy. Notably, the market is witnessing key trends and factors that are shaping its demand.
To read more about the topic please visit site : https://bekryl.com/industry-trends/narcolepsy-market-share-analysis
Key Trends and Factors Driving Narcolepsy Market Demand:
Increased Competition: The narcolepsy drugs market is experiencing heightened competition, especially in developed regions, with new entrants emerging. In August 2019, the USFDA approval of Harmony Biosciences’ pitolisant (Wakix) for treating excessive daytime sleepiness marked a significant development. This approval is poised to challenge the dominance of Xyrem, a CNS depressant by Jazz Pharmaceuticals, in the U.S. narcolepsy drugs market. The unique characteristic of Wakix, potentially having no risk of dependence, may contribute to its global traction.
Industry Consolidation: The narcolepsy market is highly consolidated, with a few key players dominating the segment. Jazz Pharmaceuticals stands out as a major player, generating US$ 1.4 billion from Xyrem sales in 2018.
Prevalence of Sleep and Neurological Disorders: A growing prevalence of sleep and neurological disorders is driving substantial demand for narcolepsy drugs globally. According to the National Institute of Health (NIH), over 40 million Americans suffer from neurological disorders.
Global Narcolepsy Market Size, Analysis across Segments:
Disease Types: The industry revenue is analyzed across narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2). NT1, generally caused by the deficiency of CNS hypocretin in the hypothalamus, is more prevalent.
Product Types: Sales revenue is analyzed across Central Nervous System Stimulants, Sodium Oxybate, Selective Serotonin Reuptake Inhibitor, Tricyclic Antidepressants, and Others.
Distribution Channels: The industry revenue is analyzed across drugstores, pharmacy, convenience stores, hospitals, and online channels. In 2018, drugstores accounted for 37.8% of total narcolepsy drug sales.
Global Narcolepsy Market Size, Regional Analysis:
Western Europe: Dominated narcolepsy drug sales in 2018, witnessing healthy growth, attributed to an increase in narcolepsy cases and a well-established distribution network. Germany, UK, and France collectively accounted for 69% of the total narcolepsy drugs market in Western Europe.
North America: The region is a major market for industry players, benefiting from favorable reimbursement policies. In 2018, narcolepsy drug manufacturers generated US$ 477 million revenues from North America. The region faces high competition, with new players expected to emerge post FDA approval of pipelined drugs by 2028.
Global Narcolepsy Market Size, Competition Landscape:
Some key industry players include:
GSK
Teva
Bioproject SCR
Taisho Pharmaceutical
Balance Therapeutics
Pfizer
Theranexus
Flamel Ireland
NLS Pharma
Jazz Pharmaceuticals
Avadel Pharmaceuticals
Research Scope:
By Disease Type:
Daytime Extreme Sleepiness
Cataplexia
Others
By Product Channel:
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Sodium Oxybate
Selective Serotonin Reuptake Inhibitor
Tricyclic Antidepressants
Others
The narcolepsy market, driven by evolving trends and treatment approaches, remains dynamic and responsive to the needs of affected individuals. The increasing competition, coupled with innovative drug approvals, promises a transformative impact on the industry, ultimately improving the lives of those with narcolepsy.
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negreaux · 19 days
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the dose i have to take for a week of xyrem ain’t doing shit really
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ledenews · 8 months
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Ohio Supreme Court Unanimously Rules No Immunity for Police Officers from Negligent Acts with K9 Officer Outside of Duty
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The Ohio Supreme Court reversed the Seventh District Court of Appeals’ judgment on a negligence claim and remanded the matter to the trial court for further proceedings in a recent case that determined whether a K-9 officer can be granted immunity if the dog bites a social guest at the officer’s home.  Chief Justice Sharon L. Kennedy, a former police officer herself, wrote the unanimous opinion of the Court which was joined in by the six other Justices.  Jamie Bordas, managing partner of Bordas & Bordas, argued the case before the Ohio Supreme Court.  “We are pleased that the Ohio Supreme Court unanimously held that a police officer does not have immunity as a matter of law for his negligent acts in keeping and harboring a K-9 dog,” Bordas said. “The officer in this case was off duty, drinking alcohol at a party at his home, and using the dog in an inappropriate manner to do tricks for his guests by having him search for drug paraphernalia in his yard and giving him police commands. There is even testimony that he gave the dog alcohol to drink. If any individual, including a police officer, engages in negligent acts that harm another person, like Ms. Harris here, they should be held responsible and their insurance company should pay damages for those acts. Ms. Harris has had significant injuries and surgeries as a result of this dog attack, and she should be compensated for these things.” The case will be remanded to the trial court in Jefferson County for further proceedings.  In the case, Harris v. Hilderbrand, Slip Opinion No. 2023-Ohio-3005, Allison Harris attended a cookout at the home of Dustin Hilderbrand, a Belmont County deputy sheriff and K-9 handler, where she was bitten and seriously injured by the K-9 partner, Xyrem. K-9 deputies keep their dogs in their homes when off duty. Hilderbrand was demonstrating the K-9’s ability to respond to attack commands and search for drugs which the officer had placed throughout his backyard during the cookout.  The dog’s shock collar, which is used for training purposes, was removed during the evening. When the K-9 attacked Harris, the shock collar was not on, leading to serious injuries that required medical attention and surgeries to repair the damage.  Jefferson County trial court Judge Joseph J. Bruzzese, Jr. acknowledged that keeping the K-9 at Hilderbrand’s home was required but noted that the dog was meant to be used for officer work, not entertainment and that Hilderbrand is not immune from liabilities caused by the K-9 when used for amusement. Hilderbrand appealed the trial court’s judgment on the negligence claim and the court of appeals determined that, “Although this was an unfortunate situation, reasonable minds can find only one conclusion, i.e., is entitled to immunity as a matter of law because there is nothing tending to show that he was acting manifestly outside the scope of his official responsibilities at the time of the incident.” Harris appealed this decision, resulting in the Supreme Court’s reversal of the Seventh District’s judgment and remanding the matter to the trial court for further proceedings.  Bordas & Bordas is a plaintiff’s litigation law firm with offices in Pittsburgh, Wheeling, W.Va., St. Clairsville, Ohio, and Moundsville, W.Va. The firm’s attorneys practice throughout the region in diverse areas of law and are licensed in Pennsylvania, West Virginia, Ohio, and Texas. Read the full article
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flob0t · 9 months
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what do you want
xyrem. i’m so tired. every day. always. and i don’t live near the pharmacy.
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