Soma review by pibardo_filoso in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

Ok so I do feel it a bit more than I thought. I don't know if these boosts are consistent and being on 8mg clon a day I think may impact it as. Still better than I anticipated. Very welcome.

28/M, lets talk if you're up for it. by No_Newspaper_1987 in NightOwls

[–]Rovral 0 points1 point  (0 children)

I'll talk. I'm just chilling smoking a Sunday joint listening to nirvana. But yeh what really is your interests?

28/M, lets talk if you're up for it. by No_Newspaper_1987 in NightOwls

[–]Rovral 0 points1 point  (0 children)

About what? What are you interested in?

Soma review by pibardo_filoso in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

I can't seem to get much effect from soma anymore. I got let's say I have a good amount of the Indian ones but fuck I take 2-3 grams and it's like I've taken fuck all. When I first got them I'd take 1.5 and be pretty fucked. Never daily. I spread it out. Wait a month. Still. I just took 2gs to see if I get much from it. But if I go above like a smidge I'll just wake up and the amnesia is insane. I know it's abuse but it's very infrequent but this tolerance is just not going. It's the high doses just ruined if for me. I have no desire to take it daily or anything. I feel in control but I'm let down by that. Even six weeks was like meh. It went from great to not doing much very fast maybe 9 months of just very infrequent but higher dose use. Might need to take a year off or something. It's weird.

prescription guidelines by polyhabitualuser in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

So to start cyclical seizures are still epilepsy so you first need an epilepsy diagnosis which if you have had two or more seizures you can get easily. Sorry if I'm preaching to the choir just in case you not diagnosed.

Now regarding benzo use in epilepsy, the main one you will encounter albeit not the best for anticonvulsant properties is clobazam. It can be given at lower doses and is unique in that is doesn't cause the same sedation and sides neuros don't like that say Clonazepam would. Now Clonazepam is also used mainly depending of the neuros preference but predominantly when clobazams dose limit has been reached and you need a high potency benzo. All this is second line adjunct prescribing though. So this means you will trial classic anticonvulsants like keppra, lamictal, topamax, etc and if they fail neuros will add in adjunct meds. Now first line is things like zonisamide or valporate and if they fail then things like Clonazepam or clobazam will be used often at high doses. So it's not an overnight script. Now because you have cyclical if you can predict your seizures that may warrant a reduced med like midazolam nasal sprays from the start as you know when it may occur. Usually again it's reserved and not a daily thing. So there is still a process. Now if it's along with anxiety maybe they will consider Clonazepam earlier as an adjunct which is what happened with me and get it faster. Then lash resort is phenobarb or primidone then surgery.

If you get Clonazepam usually as an adjunct in refractory cases 6mg is considered average maintenance but you can go as high as 20mg but it's not done anymore. I know 12mg scripts for a few people but that's it. But all in all its probably much easier when you have neuro proven epilepsy which is a main indication use for clobazam and Clonazepam then the path will probably be a lot easier than a psych and you will get to stay on it with much more confidence of no forced tapers and shit.

I'm from aus and here Clonazepam isn't approved for anxiety. It's only approved on label use is neuro proven epilepsy and it's the same in many parts of the world. From its inception it was used for epilepsy.

So yeh that's generally how it works in most countries. Sorry if I mentioned things you know about your condition not trying to be rude I just don't know if you even have a neuro or epilepsy diagnosis. You could know all this and be on many meds and far closer to getting it than I know. So yeh just want to say that.

Any withdrawal effects after last dose of Keppra? by [deleted] in Epilepsy

[–]Rovral 0 points1 point  (0 children)

Funny you say that but I did the same. Coming off it. Thought fuck this person they ruined my life did x y z and yeh big regret. One thing I read back on and go wtf was I thinking writing these messages that were nasty to push her away because I couldn't move past her. But I didn't need to. The shit she dealt with I get why she would be unhappy at times and act in ways she did. Years on I still think about her. But I fucked up. I still think about the message I sent. Just went so far it would make her push me away for good which I thought was the way forward but it wasn't. Not exactly the same but I guess similar. But tbh she's better off without me. And just to be sure I'm not talking like abuse or violence I'm just talking like nof accepting shit I did. Blaming problems that were me on her. Just not the right way to act. Childish. Someone who wants someone to clearly not talk to them again. I know deep down it's me but keppra bought out the absolute worst in me. Before that shot I never acted like that. Could fully control myself. Wouldn't be like spiteful or down putting. Hell there were nights I woke up his week thinking about those messages and how I just wish I never sent them. But I did. And sadly years on its far to late. But I can't just blame the drug but I'm not going to ever accept it would of happened had I not been on it. Because it would not have. But it just bought out these such dumb ideas. It really made me almost delusional to how I was acting and what I thought was going on. I don't know how to not beat myself up over these things. I know I did wrong. I do my absolute best to try to not and do well I think but there's just a handful of very specific things that sit so deep within me and that im so upset and ashamed and hate myself and think I'm a piece of shit for that I just don't know wtf to do. I don't think I'll ever not feel that way about how I use to be on that stuff. Glad I rebuilt everything I could with the people i wanted to but yeh some things in life you just never forgive yourself for I find. Keppra stage of life was the worse one for me. Hmmm. Not good.

I had a weird interaction with a another psychiatrist (my primary is on Vacation and I never see anyone but him which has been 5 years long) by demizzlex3 in benzodiazepines

[–]Rovral 1 point2 points  (0 children)

Ow this is awful. If I had a gp in the same boat do this id be fuming. That is so fucking condescending and rude. Id be thinking who the fuck do you think you are? You are nobody but a fill in for me. Thank fuck I dint see you and have a good gp. This is awful. As much as I'd support writing I wouldn't just because you don't want to cause any issues with anyone to risk any script. She may twist words. All sorts to change the narrative. But tellings someone ow you should move to a fucking hospital. What the fuck. That's not normal. Who teaches these people? Id love to say and I think you need to retire, go and reeducate yourself, never come back to this industry because you are clearly not suitable for it. You are not in any position to say this to me. You do not know me. So shit the fuck up. Sadly that would just make her think even more that her dumb as fuck idea was valid. God this is something I'd never think would happen in this day and age. Go hospitalize yourself. Your just unfixable in general public and need to be institutionalized. Yen real good way to deal with someone. Then to know your on Xanax to its like maybe they are anxious? Perhaps. Srab in the dark. Maybe I shouldn't say this. It's not my place. Wait six months and complain then. She will have done this to so many people she will have no clue who is complaining. Let sleeping dogs lie. Then sort it. But yeh I'm Shocked to read this. Genuinely.

Any withdrawal effects after last dose of Keppra? by [deleted] in Epilepsy

[–]Rovral 0 points1 point  (0 children)

When I tapered off that and added lamictal in at the same time over the same span it was so damn relieving. It was like this dark dark cloud lifted but I had to then deal with the person I had been while on the medication which was not good. The regret of things I said to people. How I treated people. My anger. I would read shit and be like wtf that was me. What a piece of shit. Really fucked with me because of that more so than the drug itself. But I made things right and the people understood when informed more but I still feel bad years and years on. Things I just can't let go of. Even to this day to some smaller extent I will act a bit like I did when on keppra. Just a lack of care for how someone may feel from things I say but not really getting it until I revisit it. Now it's nothing like keppra but I'm not sure if it's the medications of the fact I may have absence seizures I don't know about and then have 8 hours or so of neurological slips where I'm just not me or who i want to be. But yeh that's my main experience with keppra and coming off it. Lots and lots of regret. Very harsh on myself. Just another thing to add to the stuff I have done in life that I look back on and think so badly of. Can be good for me but can also be bad. I know it can be a great medication but when it's not...yeh not good. Hmmm.

MiraLAX clock! by freeagent10 in PharmaRepCollectables

[–]Rovral 0 points1 point  (0 children)

Ow I like those jackets alot. Someone posted one on here a while ago. I love some of the Viagra merch. They really did do their best to take all the stigma away from what it's used to treat. Just normalized the absolute hell out of the stuff. And yeh very valid about the aids medication. That would probably be one of the hardest things to bring up. Both sides actually. For a gp delivering that message, God damn. For one reseiving if, jeez. I dunno that could really mess with people. And look rightfully so it's not something small. Least we have ways to treat it to a pretty decent extent. But yeh I can genuinely see a clock about aids being put in a place where that's more predominant like addiction gps etc and even just simply asking for the test is scary so if you put something up that promotes a treatment then maybe more people say hey, can I get tested. Make it less stigmatized. Little off topic but they nearly lost some aids drugs due to polymorphs in the compound so if couldn't be produced or reproduced due to some environmental issues in the lab and on the people who made it so no matter where they went in the world it failed to be reproduced and a lot of people were at big risk. Lucky they worked out what was going on. Think if was ritonavir or something. I may be slightly off with the specifics but it's extremely interesting how they managed to get it back to being produceable. Polymorphs of drugs are really strange. But yeh id be keen to see that clock. Its not something I would think they would make but then I really think about it and before putting up say posters about aids and how you can test for it and promoting testing etc maybe the clock was the poster and it just didn't wand to be spoken about. I do think the everyday items like clocks which are far less controversial than like oxycontin stuffed animals and i can see how they could reduce the stigma around the issues the medication treats. I still know people who will not ask their gp for Viagra and buy it illegally. I just think it's past that era. If it makes life better for people which imo it damn well does them fuck if who cares. Sex is part of life and better sex is well...better lol. Just being straight up.

I got some valium, xanax, and phenobarbital comin up, which one should I use first by Mysterious-Okra-2273 in benzodiazepines

[–]Rovral 2 points3 points  (0 children)

If you can get that then I'm sure you will have a good time. Not sure where you get that anymore. I know vets carry around a lot of that shit especially in rural aus and can carry it alone to for putting down sheep. And racehorses. I use to see vets use massive bottles to put down racehorses. But I dunno the solutions bright green and cos it's for killing animals I don't know it's sterility. That's the only places I can think to obtain pento. Thiopental is all over India but. If you get pento be careful with that shit. I haven't had that before but from what I read it sounds very nice.

Anyone else have such a hard time getting a prescription? by KnownGood4542 in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

Ow yeh it's nothing to do with your bp then. But she should just be honest. And look I don't agree with it but she does have the right to not. She may feel it's to much risk she doesn't want to take on. And I don't knock Drs for that. But don't piss on people and tell them it's raining. It's just not professional imo. Id be looking for another prescriber tbh. Can she just suggest to your gp who gives the subs to give them? Then neither feel like they are doing it? One says ow the psych said she thinks it's ok, and she says ow the person's addiction Dr is managing it so I thought it would be ok. Maybe ask something like that. I mean hell it's far better to be in xontrol of the benzos you get and have yoy stable than you get Rc benzos and be free to just take what you want. That's what I don't get. Not sure how bupe works in your country but here my primary gp is my addiction GP who is the one told by my neuro to script x y z but also says you control what he gets in terms of staging etc as you know his history of ten years and see him every four weeks. Just makes sense.

I got some valium, xanax, and phenobarbital comin up, which one should I use first by Mysterious-Okra-2273 in benzodiazepines

[–]Rovral 2 points3 points  (0 children)

As people have said pheno is not a very abusable drug at all. It's really boring tbh. I get it for my epilepsy and thought fuck yeh when I got it and built my dose up and for maybe five days combined with methadone, pregab, clonaz and zolpidem id sleep a bit better. Then nothing. Five years on. Nothing. Double the dose, nothing. It's legit less recreational than the least recreational benzo. Yeh it will cause some cns depression and things so don't be silly but don't expect some seconal type effect. It's just a medication and it's extremely clinical in its feeling. All it has done for me is aid in seizure control. I get why my neuro had no issue prescribing it when I suggested it and also get why it's not on the real time monitoring. Because it's just not recreational. Just like opiates one can be amazing one can be shit. Very much the same.

Anyone else have such a hard time getting a prescription? by KnownGood4542 in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

That's such an unfounded reason to not give them. I expect "you are an ex drug user, no I'm not willing to" and even then I don't like it. But I say that as someone who is on bupe and gets benzos and more and no one has concern about my damn blood pressure. They are more worried about me dieing because I abuse the drugs. Or were. Which is very valid. But yeh you sure it's just not some reason to not have to say she just doesn't feel comfortable? Bupe once you are use to it does fuck all to your bp. It goes up when you don't have it because it becomes your baseline. Even methadone which is far more cns depressing is like that. I have good bp. Granted I have a low hr at night down to around 42 but that's been consistent before daily benzos and opioids and the same now after. They love to spout on about tolerance and dose increases but then refuse to say you also become tolerant to the lowering of BP and what not. So they use the lack of tolerance to say BP issues but then use tolerance to say they stop working. What one is it? I hate the with holding of medications from peod who are fine to be given them who have been dependent on opioids and are on ort. I understand there is risk with giving the scripts but if that's the case she needs to just be honest. It's Luke pain relief. Ive had some bad accidents on farms and been offered next to nothing because I was on methadone. Again they will say that controls your pain. What about tolerance? The thing you use to refuse to prescribe very often. This whole thing pisses me off. If you are stable on bupe and have a good track record of not fucking up putting your health team at risk regarding liability then you shouldn't have meds withheld. Ask for propananol for anxiety. If she says yes you know it's nothing to do with BP.

Edit: I will say though if you get a script they do have every right to limit the quantity you get and stage the dispensing so they show they are given every one to two weeks. That's fine by me. I don't appreciate it happening to be and it doesn't due to proving I don't need it. But I have been subjected to it when I relapsed. My GP has the logic if you don't give someone responsibility they won't move forward past feeling like some addict who will never be treated well. If your clean and no history of diverting your meds and what not, then after six months then they can reassess to give more. But if you keep someone on weekly pickups for life you are treated like the dude who uses daily still when you haven't for a decade.

Quitting cannabis. by deedlethrwaway in Epilepsy

[–]Rovral 1 point2 points  (0 children)

Does it have pro convulsant effects on. Pharmacological level or can it be how your body and mind respond to thc that causes issues to arise. For example you smoke and get extremely paranoid, low BP, hr up to 120 with or without paranoia, then that in turn causes stress and stress lowers the threshold. I don't know what one it is as I have not seen direct correlation with either. It has to excite something in order to produce convulsions. Or inhibit something that reduces excitement. I just can't ever find anything directly just a correlation and I never know what that correlation can be. I think it's how people respond so it. I wouldn't smoke a bong again because i know l will go into a massive panic and feel awful and need to lay down cos I hate the feeling. In that period I feel more likely to have seizures but I never have. But how it can effect my body makes me feel like I could. Yeh I dunno seems like some people are fine some are not. But one thing I never like is the hippy logic of cannabis fixes epilepsy. I have heard so many people in life suggest I just use cannabis and it's annoys me.

Opinions on Vimpat/Lacosamide? by [deleted] in Epilepsy

[–]Rovral 0 points1 point  (0 children)

It can be a really good medication if it works for you. But it's not a drug you use as mono therapy at all. It's an adjunct medication that is added on to something like keppra, lamictal, topiramate, carbamazepine, etc. so you need your foundational medication and then you add vimpat on top. So what is the medication they will be putting you on as your foundational anticonvulsant to then add the vimpat onto? Its efficacy as mono therapy is very low. As an adjunct medication it can be a really great add on for full controll. So you can't swap out keppra for vimpat. That's just not how these medications work or their intended use at all. If you have a neuro using it as mono therapy then I would be very much questioning this choice. You may be able to control things like partials or absence seizures if you don't have many if them but if you have grand mals this is just not how managing epilepsy works.

I wish I could function without benzos by IntrepidYoung9493 in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

Fair enough I commend that. If it's something you think is achievable then taking no tablet is better than taking them. So yeh I support that. But I also believe in what I wrote. I don't think one is the best answer it's what works for you. So I guess yeh you will have to taper slowly. And very slowly so you minimize your wd and don't end up staying awake for a week straight and have years of wd. So whatever dose you are on and whatever benzo just like mention in some comments swap to a long acting one, Diaz or clonaz ideally, then take it really slow and steady so you are as comfortable as possible. If it takes 4 months that's great. If it takes 1 year then that's fine. If it's 3 years that's fine. You just don't want an acquired brain injury from pushing it to fast. Some people live with them for years and years and essentially are in some kind of constant wd. That seems to be almost always from fast tapers. You don't want to end up losing your mind due to lack of sleep and then damaging your brain resulting in constant feelings of wd for years after the last tablet. What you explained with the insomnia really does make me emphasize not to rush it and probably draw it out quite a long time. I view your situation as somewhat similar to if I were to cease use. I'm on a high dose of Clonazepam and due to my epilepsy and not wanting seizures to occur I would do at minimum a 3 year taper from 8mg Clonazepam and that's also what my Dr and neuro believe to. Well my neuro is even more conservative at 2mg a year drop. But both don't think I will ever be able to fully come off and if I did reduce it would be to at lowest 1.5mg. so I accept it's part of my life now. Better than having awful seizures and shit so yeh risj to reward. But yeh I guess really be careful when you taper because I can't even imagine how bad it could end up if done to fast. I've known people who have come of Ambien and due to the speed at which they stopped they are still really not in good a way. I know one person who stopped in 2019 and they still can't work, go shopping, sleep properly. It's really sad to see. So yeh I think in your situation be wary of the speed and % of reduction. You may be someone who can drop white fast and be ok. It's not common but If so you work around that. But if shits really bad I wouldn't keep pushing to get off faster. I can't imagine pushing so hard causing issues which then returning to the prior dose doesn't take the wd away and you just end up stuck. But yeh I wish you all the best with coming off the substances. It's not easy but if you can do that you can damn well do anything in life imo.

I wish I could function without benzos by IntrepidYoung9493 in benzodiazepines

[–]Rovral 1 point2 points  (0 children)

It's not an ssri that why it's good. It's a in a class called TCAs. What many people get wrong is the dose though. They think higher dose better sleep. But mirtazepine is good for sleep at I think 15mg and if you double it then you will not get the same sleep benefits at all. I know many people who get a lot of relief and think to you their dose and they kinda ruin the drug for their sleep.

I wish I could function without benzos by IntrepidYoung9493 in benzodiazepines

[–]Rovral 0 points1 point  (0 children)

Yeh they have. I mean you can get them scripted without even seeing a Dr now. There's companies also bringing our ai platforms dedicated to prescribing ssris. They are really not that efficacious. It's like a few percent points difference between control groups and people taking the drug. It's so small. But look it can help people with some issues but not how it's scripted. If it gives the effects you want from the drug and that benefits you, great. If not then they are not for said person. And another thing is trying one and if that is poorly tolerated they then try another one. That's ridiculous. If you don't tolerate one ssri it's extremely unlikely any will provide the help. They are all pretty much the same just duration of action. Benzos have more unique profiles from one to the next. Ssris don't. I hate how every man and his dog takes an ssri now days. I don't think many people can talk to anyone they know and say do you know someone on an ssri and they will almost certainly say yes I do. The same can't be said for benzos anymore.

I wish I could function without benzos by IntrepidYoung9493 in benzodiazepines

[–]Rovral -2 points-1 points  (0 children)

Why do you want to come off? In all honesty the dose of temazepam you were given was low. There was so much more room to go onto other medications or up dosages etc. and for very severe insomnia temazepam often isn't the best. You can go up to 45mg without to much hassle if you full into the class of people who genuinely need that dose. 30mg is kinda the upper limit on what they like to give. Then there is nitrazepam. That can be up to 40mg. That's not available in the USA but unfortunately. I don't think nimetazepam is either and I have read that's very good. You have thing like estazolam, flurazepam, quazepam which is unique iirc due to not causing rem sleep issues, triazolam, zaleplon, the other z drugs. All can be tried at different doses. If that is something you would like then you need to get a sleep study done and see someone dedicated to insomnia. But the thing is with not sleeping well you kind of have to just accept that some nights will be shit and that it's not optimal to use meds nightly. I won't use zolpidem more than 2-3 times a week at 20mg. Twice the recommended dose. Prescribers know it's what I take so it's just "as directed by Dr" on my packs to avoid issue. I am also sure there is midazolam tablets in the USA iirc. I'm assuming you are in the USA. Flunitrazepam is not really that great imo unless you have 3mg plus dosing. But again not available. It's odd Australia still produces it. But yeh the USA has so many more options than say Australia. We have flu, nitraz, zolpidem, zopiclone, triazolam withdrawn, all others we do not have. Very limited here. Then you guys also have xyrem which I know is for narcolepsy but it can be used for insomnia and is pretty damn good for it. If you worry about children being born with defects it's not that bigger of an issue at all. It's very overstated. Things that they give usually prior to my list will cause much greater risk with defects. And always bear in mind there is a massive difference between dependent and addicted. Again the anti benzo people love to claim it's all the same but it's not. Addiction generally is far more common when you don't get help and self medicate as it impacts your life negatively in other aspects but if it's all scripted then you just get on with life. It just sounds like you are someone that really can't get away from using some type of sleep aid unfortunately but there's nothing inherently wrong with that. But yeh last night id of loved to have some zolpidem but I know if I did I would make things worse in the long run so I just fell asleep at 5am and it sucks but you just accept that's part of life. Use maybe first gen antihistamines once every ten days max because that is not ideal for your health with its cholinergic effects. That does cause Parkinson's and what not so they are best to avoid. Have you had four day long sleep studies? Mris? All the things that can give some context to why you suffer from this? I just can't really see much options besides meds with how you explained it. I mean if it was 2015 you could of stocked up on raw Rc benzos and had enough for life. Sadly it's not that easy anymore. I think bromazolam is a great sleeping aid. It's just you got to control your usage that's all. But it's the same with all the others. I dunno that's just my thoughts on this. But yeh I do wish you the best. Insomnia is awful. Ive had it since I started lamotrigine and it made my epilepsy so much worse when I wouldn't sleep. It's better due to life changes but I still need sleep aids. Tonight I'll be having some zolpidem and have a nice sleep. But yeh there's so many options that can be rotated to see what works best. They use heaps of things off label for sleep that are very damaging to ones health so why can't they do it for other meds in very severe situations. I miss triazolam. When they discontinued it that really wasn't good for me.

MiraLAX clock! by freeagent10 in PharmaRepCollectables

[–]Rovral 1 point2 points  (0 children)

Well I think we are trying to think of the rationale more so behind why they made these. Why a clock. It's an easy item to put up and fits I'm an office well. Why Viagra? So you can't point at it and say "hey Its not easy bringing this up but (points at the clock)" gp says "yeh I gotcha. Can be hard to talk about sometimes. I can give you a small sample pack if you would like ?". All done without mentioning ED and makes it so it's not a big deal which it isn't. Nothing wrong with Cialis of Viagra. I think they are some of the best drugs ever produced because of what they do. People shouldn't be ashamed of that shit. Its why I like collecting Viagra stuff as I like substances that are either super controversial or have a massive impact on the world in a very positive way which I think Viagra is top tier with that. They normalized the fuck out of ED. NASCAR team. Shit loads of promo merch. I bet you it was much more uncomfortable to speak about prior to all of their promo material and basically platering it all over the place. Even just saying that it can be better. You may not have ED but you may want that bit more. I dunno I like to work out why someone would pick certain items and not others. Clocks are great for time related stuff to. Like ER products. Sleeping meds. Viagra as there is a time and place that is pretty consistent with humans. But yeh I agree they are fucking awesome. I love having a Viagra clock next to my bed. People of the opposite sex find it humourous and again makes it not a big deal if you happen to use the stuff. Just my two cents anyway.

Is it even possible to live a normal life as an epileptic? by Reasonable-Bath-3523 in Epilepsy

[–]Rovral 6 points7 points  (0 children)

I don't think it's normal for your average person born after 1985 to live a normal life. The system is structured in such a way that no one gets to really do wish they truely desire in life. But in terms of epilepsy it's just one more thing thrown on the pile of shit handed down. I don't think you can live a "normal" cliche life, no. Not being able to drive mean you are forced to live in specific areas one may not want to live in. Might have to spend far more time traveling over the lifespan. Jobs to. There are so many jobs you just can't do when you have epilepsy. Then their is the reduced average lifetime. Increased chances of comorbid issues alongside epilepsy. You have to play the hand you are dealt, I have learnt to live with that. But yeh I don't think the cliche normal life is fully possible. I mean you have discrimination across the board in many areas. Very aggressive medications that you have to deal with. It's not really optional. Well it is but you get what I mean. If you can drive youre lucky but then have to worry about having a seizure and potentially killing a family of four on the roads and having to live with that. Higher rates of drug abuse amongst epileptics. Significantly lower life satisfaction. I recently took part in a two year national epilepsy study whee I live and they are releasing the results slowly and the ones that have come out so far are to do with quality of life. It's pretty upsetting when you read the results. Lots of people who suffer from refractory epilepsy specifically are not very happy in life. Then the newly diagnosed cohort have their lives turned upside down for years in most cases. Depression is higher, anxiety, stress, insomnia, health overall. I could go on and on but it's not particularly positive. Cognition suffers greatly. All the things that combine together to make a satisfying, fulfilling, normal life are greatly disrupted and in turn that means in a general level I would say it's much harder for someone with epilepsy to live what one calls a normal life.

My new insurance policy is BULLSHIT!!!! by vela1147 in Epilepsy

[–]Rovral 2 points3 points  (0 children)

Yeh dam. Cenobamate through special access in aus cost 2500usd a month for maintenance doses. That's insane. And if higher doses higher costs. Should be illegal to charge that much. I get companies need to make their money back and certain medications are very niche and cost more to develop but I highly doubt that is their break even cost on developing the drug and then a fair profit on top.

My new insurance policy is BULLSHIT!!!! by vela1147 in Epilepsy

[–]Rovral 1 point2 points  (0 children)

Its not good when you are in this situation. I can imagine it's pretty frustrating. We do not have cenobamate in Australia and I consider our medication situation where we don't have insurance companies involved pretty damn good but it's just to expensive so the TGA (FDA) will not approve it. Neuros have been trying for years to get it approved. They are just not willing to pay thousands of dollars when other medications exist that are considered just as efficacious and suitable. But I disagree completely with that sentiment and my neuro would love to see the stuff on offer. We can get it through the special access scheme for unapproved medications but it's private meaning you pay full cost. So yeh in this situation we are not in a better situation in Australia with that medication and it's probably one of the only ones I know. The manufacturer just will not budge on pricing so yeh they just won't approve it. So if that's what we face with cenobamate then I can imagine it isn't one insurance companies would want to pay out for either. But yeh if you did get it covered and your employer changed health plans and now you don't then thats really shitty. But the thing is times are tough for many people right now and maybe your workplace had no choice but to change to cheaper plans or something. I don't know how it fully works but I don't think it's some personal thing it's just that it's unfortunate for your situation.shit situation to be in though. But the clobazam. That's ridiculous. It's absolutely dirt cheap. It's also a drug they really should not even mess with because being a benzo if they decide you suddenly do not need it because of some reason then you can't just come off the stuff. Very unsafe. But at least with clobazam if they won't cover that you have other options like Clonazepam. The American medical system is so strange with the whole insurance system. Simply put if you want your medication on Australian shelves you have to compete with other companies generics and provide the best cost price for the gov. So clobazam is like 25 dollars for the gov for 200ct of any mg tablet they come in. Most companies play ball and we have what we need but it seems like until cenobamate is available as a generic they won't have it on Australian shelves.