EVER feel like a PARIAH?

[CptKirk]

@

@CptKirk I am sorry for your troubles and you are not wrong or alone, dealing with doctors, RXs, and, of course the VA can be a trial by fire.
Believe me when I tell you, my wife has been in a battle with breast cancer that has changed the very way I look at life.
I, in no way, want to offer you advice, only support. I have read your posts here and many of your complaints are over situations that I have experienced first hand. Going through multiple surgeries is a huge burden and to compound it with lack of medication and to then have to navigate the medical and insurance nightmare can become almost completely entirely intolerant.
I said I wasn't going to give advice but "Please don't hurt anyone" I say this because they have really tried my patience, they also saved my wife's life.
Hang in there Captain, I know you are a strong person. Good will prevail, and things will get better.

@KBoy, hurting people has never been my goal and is also the reason I refuse to go to the ER anymore, but that leaves me in a bad place at times. I don't have a good answer on how to proceed with this issue though. I have no idea HOW I managed to get out of the ER the last time I was there without hammering on someone and I don't have any real memory of leaving there, either. That's a scary thing as my memory is almost always impeccable! I know I was far beyond livid from the instant the Dr. go in my face "yelling" at me that they don't care who advocates on my behalf, they don't treat headaches there. I did not want to go to the ER that day, my Pain Management Dr. did everything short of physically force me to do so. I love my Pain Management "team" as they've truly done what they can to take care of me even though they're doing this with one hand tied behind their back thanks to people who don't have a single day's worth of medical training making decisions for them. This is what I mean by the gov't and their "Opiate Crusade". My non-VA PCP wants OUT of the business of being a Dr. as he despises being told "HOW" to do his job and this is one of 2 Dr's I have that I am about as certain as one can be that I wouldn't be here today without him.

Anyway, my intent is never to get entangled within the nightmare of lashing out (physically) at anyone can lead to but I am truly afraid of what may happen if pushed too far past my breaking point by someone being a self righteous prick. Not being able to recall leaving the VA ER the last time tells me that mentally, I was already there and again, no clue HOW I managed to restrain myself.

CptKirk

PS AWESOME to hear that your wife beat breast cancer! Glad to hear that.

 

[KBoy]

I feel you're pain, we have been through so much, and people have been very kind to us. But not everyone, I have been pushed to my limit many times.
Stay strong Captain, you are not alone.
Thanks for the kind words as well. If we don't have our physical and mental health, what do we have. A bank account?
O and keeping our cool is best for our health as well.
But I bet I am preaching to the choir on that one lol

 

[CptKirk]

Just to be clear I have no objection to your having access to medication which works for you.

I can't speak for your prescriber, but have done my best to offer what may be some of their concerns.

I truly hope that, whatever it may be, they find a regimen which is safe and efficacious for your needs and soon.

@Anemone If my response came across as being mad at you I apologize that's not my intent. I like your replies. This is one of my qualms with message boards. Text can't convey tone of voice, can't tell you're joking, being sarcastic (in a good, funny way) etc.

Thanks!

CptKirk

 

[PaddedPonyboy]

good lord, 16 hours on a gurney with no pain medication... you are tough as hell, CptKirk, that's brutal. i can't even imagine what hell you must've went through. with all these modern medications, you'd think we have ones that are truly effective- i can't even begin to know what you're going through, but as someone who's chronically ill, i've been fighting a battle of "are these pills going to work or just waste my time?" for years. i've been struggling to get pain medications that work for me because where i live they refuse to prescribe opioids to young people even if we don't ask for them because we "will abuse them". not that i particularly want to be on them, but i have been struggling for years with pain with little more than gabapentin to help, which it does help! but i'm still in pain daily. sleep is such a fickle mistress too, i've dealt with insomnia my whole life (schizophrenia & PTSD) and the only thing that helps me sleep is an antipsychotic. everything else just wasted my time. ambien? what a joke!

i hope you can get what you need, that is a lot to go through. 6 invasive surgeries and still being treated like garbage... hang in there, you are one hell of a tough guy. you deserve better

 

[Anemone]

@Anemone If my response came across as being mad at you I apologize that's not my intent. I like your replies. This is one of my qualms with message boards. Text can't convey tone of voice, can't tell you're joking, being sarcastic (in a good, funny way) etc.

Thanks!

CptKirk

I know you are not in a happy state of mind at the moment, understandably so, and I certainly didn't want to risk adding to that. I too sometimes forget how the medium strips out nuance, I know I can rub people up the wrong way even when I'm trying to be positive.

Seems like neither of us has upset the other, I'll call that a win!

 

[CptKirk]

good lord, 16 hours on a gurney with no pain medication... you are tough as hell, CptKirk, that's brutal. i can't even imagine what hell you must've went through. with all these modern medications, you'd think we have ones that are truly effective- i can't even begin to know what you're going through, but as someone who's chronically ill, i've been fighting a battle of "are these pills going to work or just waste my time?" for years. i've been struggling to get pain medications that work for me because where i live they refuse to prescribe opioids to young people even if we don't ask for them because we "will abuse them". not that i particularly want to be on them, but i have been struggling for years with pain with little more than gabapentin to help, which it does help! but i'm still in pain daily. sleep is such a fickle mistress too, i've dealt with insomnia my whole life (schizophrenia & PTSD) and the only thing that helps me sleep is an antipsychotic. everything else just wasted my time. ambien? what a joke!

i hope you can get what you need, that is a lot to go through. 6 invasive surgeries and still being treated like garbage... hang in there, you are one hell of a tough guy. you deserve better

While I don't have a dollar figure to put next to my medications since '20, from 2004 through 2019 I only had 3 years when my prescriptions cost less than $100k/year! The highest was $136,xxx.xx which left me shaking my head!

Update, what the VA prescribed for my anxiety was "QUETIAPINE FUMARATE 75mg" which I did get SOMETHING beneficial out of...I learned which medication my Psychiatrist had me on that REALLY ENRAGED my headache! This was it! So I get to add that to my ever expanding list of things that crank my headache up and sadly, that's all it does as it does NOTHING for the anxiety at all!

 

[dogboy]

Two years ago I experienced a day of extreme neck pain, somewhere close to the 9 on the scale of 1 - 10. I got worked in to see my doctor and he prescribed the 5, then 4, etc. cortisone pills and a muscle relaxant which immediately worked but I also made an appointment with my neurosurgeon and he gave me a prescription for diclofenac along with taking physical therapy. The diclofenac kept coming for about a year with me first taking two a day, then one and finally, one every other day.

As the dosage got less and less, my neck began to hurt more and more. The other thing I realized, especially when the prescription ran out, was that all my spinal pains, back and hands, that pain came roaring back. I hadn't realized how well the diclofenac really worked. I wished I could have stayed on it but apparently it's bad for your kidneys.

So like I said way up above, it's shameful that medical science hasn't come up with something that greatly reduces pain but doesn't have harmful side effects. I know you're really suffering and no one should have to suffer like that. My pain is manageable so far, but yours sounds horrible. I truly hope something can be done for all of us who deal with daily pain.

 

[PaddedPonyboy]

While I don't have a dollar figure to put next to my medications since '20, from 2004 through 2019 I only had 3 years when my prescriptions cost less than $100k/year! The highest was $136,xxx.xx which left me shaking my head!

Update, what the VA prescribed for my anxiety was "QUETIAPINE FUMARATE 75mg" which I did get SOMETHING beneficial out of...I learned which medication my Psychiatrist had me on that REALLY ENRAGED my headache! This was it! So I get to add that to my ever expanding list of things that crank my headache up and sadly, that's all it does as it does NOTHING for the anxiety at all!

they put you on quetiapine for anxiety??? what the hell??? that is an antipsychotic medication, that is what i take for my schizophrenia! it doubles as an insomnia medication when i take it at night but what the actual hell are those doctors doing over there????? i've never heard of that being prescribed for anxiety in all my life!!! and i've known a lot of behavioral health professionals & other people dealing with mental illness! no wonder you don't feel any better, i'm so sorry!

 

[Anemone]

they put you on quetiapine for anxiety??? what the hell??? that is an antipsychotic medication, that is what i take for my schizophrenia! it doubles as an insomnia medication when i take it at night but what the actual hell are those doctors doing over there????? i've never heard of that being prescribed for anxiety in all my life!!! and i've known a lot of behavioral health professionals & other people dealing with mental illness! no wonder you don't feel any better, i'm so sorry!

It does seem like an unusual choice but polypharmacy may limit the safe options available.
Quetiapine is sedating, and so may be expected to have similar benefits to a benzodiazapine with regular use. It also has mood stabilising properties which could help with the drivers of the anxiety i.e. to mitigate it before the fact. Also it has the benefit of a relatively mild side effect profile, especially at lower doses such as this.
@CptKirk I hope it does you some good.

 

[PaddedPonyboy]

It does seem like an unusual choice but polypharmacy may limit the safe options available.
Quetiapine is sedating, and so may be expected to have similar benefits to a benzodiazapine with regular use. It also has mood stabilising properties which could help with the drivers of the anxiety i.e. to mitigate it before the fact. Also it has the benefit of a relatively mild side effect profile, especially at lower doses such as this.
@CptKirk I hope it does you some good.

i suppose it wouldn't be so bad at a low dose. i feel like there are much better options before resorting to an antipsychotic, since they affect so many different parts of the brain, and can have extremely nasty withdrawal side effects and can be really hard to come down off of after you've been on them for a while. the sedation really helps with insomnia, i know CptKirk mentioned struggling with sleep, i really recommend taking it at night if you don't already because it really does help with that! and i can attest to the mood stabilizing affects, you're right, it really does help in that department with me as well, but that makes sense given that i'm bipolar/schizoaffective.

I hope it does help! it's just such a bizarre choice unless you've tried a lot of other meds that just haven't cut it for you, or like anemone mentioned, if they have limited options. i've been on benzos before and i actually don't like them despite having severe anxiety. don't like the way they make me feel! they're not for everyone, that's for sure

 

[CptKirk]

It does seem like an unusual choice but polypharmacy may limit the safe options available.
Quetiapine is sedating, and so may be expected to have similar benefits to a benzodiazapine with regular use. It also has mood stabilising properties which could help with the drivers of the anxiety i.e. to mitigate it before the fact. Also it has the benefit of a relatively mild side effect profile, especially at lower doses such as this.
@CptKirk I hope it does you some good.

I can't take it as it ENRAGES my headache. When I first took it my headache was a shade more than moderate (6/10) but not intolerable, especially when I'd take a hydromorphone though the effect of those doesn't last anywhere near the 4 hours they're prescribed for while the 2nd time I tried this it made my already pretty bad (7/10) headache blow past 8 right to a 9/10 and I was in AGONY! I stopped seeing the Psychiatrist I'd been seeing because he refused to hear what I'd been saying, over and over and over again. My biggest complaint and perhaps the biggest driver of my mood (besides pain) is exhaustion as the majority of nights I'll wake up within 90-120 minutes of falling asleep due to pain but then will NOT be able to fall back to sleep for hours. I've seen more sunrises in the past 10+ months than I ever wished to see in my life. I went countless times without sleep because it would be 8-10 in the morning and I'd have to be somewhere or I'd have something I had to do and figured I'd be better off staying awake as there would be no way on Earth I'd ever wake back up for Dr. appointments or anything else. I have a LOUD alarm clock and it's never more than 3' from my head yet it will be playing for hour after hour with me alongside of it because I'm so exhausted I never hear it. I BEGGED him for ANYTHING that would get me to be able to fall back to sleep and all he would ever do is increase the dosage of the prescriptions he already had me on that had never worked. I finally stopped taking the 4 medications he prescribed in October or November and I INSTANTLY started feeling better despite not sleeping regularly at all. The last time I saw him I told him that I felt better after stopping everything he had me on and he wanted to increase all of the dosages AGAIN and have me resume all of those meds so I stopped seeing him.

Since then I was asked IF I was willing to see him again and I told whoever it was that I spoke to that I would be, but IF he didn't listen to me that would be the last time. I have an appointment coming up with him and a nurse that works in mental health but I don't know the date. I have so many damn appointments that I can't keep track of them and I simply show up for them as they come up. Last year between all of my Dr's I had to have 5 or 6 DOZEN appointments though many of those were with pain management as I have radio frequency ablations on my Coccyx and my L4/L5-L5/S1 Facet joints alternatively, every 3 months on average as well as injections into the same place alternatively every 3 months or so, meaning I see them 8x/year just for those procedures which always involves a "pre-surgical" (they do these in the same day surgery unit at the VA) appointment so another 8 appointments and that's not even counting my "regular" appointments that I have with the pain management team, at least another 6-8 appointments. I always try to have as many appointments on the same day so I'm not going there every damn day of the week but that doesn't always work out.

I have NO CLUE what's left for him to prescribe for sleep but none of the "sleep" medications work, period. This is why I'm so pissed off as Valium WORKS! I honestly don't give a single shit IF I drop dead in my sleep at this point and in all reality I was still using the Valium I had saved up until I ran out at the end of January and man did I space the pills I had remaining out as the last dozen pills (roughly) lasted me for 4 or 5 months. I obviously didn't suffer any issues with them. I understand the risk and I am willing to assume it. I'd rather have 10 years left of life I am able to enjoy compared to 15, 20, 30 years with me being miserable much of the time. I will take quality over quantity every single time if given the option to do so and every Dr. I've told that to understands yet here I am. I guess I shouldn't bitch, at least not until I see him the next time. Whoever I spoke to promised me they'd get him to "HEAR ME" and I have already stated that if he wants me back on the same meds I am NOT taking them. I take far too many pills every day to begin with. I don't want (or need) him to be adding the 5-8 pills per day that he had me on, especially being I told him for over a year that they weren't working or making even a minimal difference.

I guess I'm going to find out though. I'm truly tired of being a fucking medical "experiment" for a myriad of Dr's though. A good example is that I agreed to try a ton of different meds for pain management. MOST didn't come close to being effective two made my headache worse and one (Methadone) caused me to brutally swell up and I had to go to an ER (I wasn't home) as my hands had swelled so badly I couldn't grasp anything or close my hands even halfway. Thankfully they resumed what I'd been on continuously since the latter 2000s (began in 2006 but it wasn't consistent at first) as that plan of action actually gives me the ability to enjoy life when I am able. Why anyone would want to live a life they can't enjoy I don't understand. As far as Methadone is concerned, I am honestly not all that upset that I can't take it as I can already imagine everyone seeing that on my prescription list assuming I'm an addict in recovery. Bad enough I'm already prejudged in ERs. I don't respond well to judgmental people at all. The instant anyone talks down to me I begin to wind up tight.

CptKirk

 

[Anemone]

That's a fairly terrible experience to have. Communicating all of that in a consultation, especially one where there has been a past erosion of trust, would be difficult at the best of times.

I would consider putting your thoughts into writing (you just have so it's probably an editing job at this point) and taking them with you. It will protect you against becoming flustered and from being ignored as you gain control over what makes it into your records.

Good luck!