I saw a new GP this morning to plead my case for valium. I have been taking valium sporadically, on an as needed basis for literally decades now. I have always had bad Premenstrual Syndrome (PMS), and mid cycle and just before my period I get very emotional, and suffer terrible insomnia. Mostly I get very sad, and cry a lot. Valium is calming, and helps me relax. It also helps me sleep. It works very well for me, where the usual treatments (contraceptive pill, anti-depressants and anti-anxiety medications) do not. I take metformin daily for Polycystic Ovarian Syndrome, which is the underlying cause of my mood symptoms (hormone imbalance), and that also helps with the emotional aspects of the disease.
The last two months, however, my symptoms have been much worse than usual. I have had panic attacks, spent days crying, and just not dealing. I don’t know why, but it likely has something to do with my pain levels increasing, my function levels decreasing, and life being largely confined the couch.
Not the life I would choose. No one would.
But valium gives me symptomatic relief, and sleep! Without sleep everything gets worse. Pain seems worse, and I am more short tempered. Surprisingly enough it’s much harder to stay cheerful and positive on an average of four hours sleep a night.
My usual GP used to prescribe valium monthly for me, but lately with the whole opioid scare and addiction being such a major concern and the guidelines stating specifically that under no circumstances should you prescribe opioids and benzodiazepines together, he stopped my valium. I wasn’t happy, but he was resolute.
I tried melatonin, it works for a few days. And I tried Stillnox. Stillnox had unbearable side effects, vivid nightmares, depression, anxiety, crying jags…Stillnox makes methotrexate look like a party drug.
I tried. Now I want valium back. I am heading into the PMS zone and I want some help managing that. PMS acts as a huge amplifier for me. Whatever is on my mind is increased in intensity tenfold. So when I was happy, I was mega happy. But when I’m sad…it’s horrible. The feelings are real, the issues are real, PMS can’t create things that aren’t there…but those feelings are usually under control.
I know it doesn’t sound so bad, it’s hard to describe. I don’t experience rage symptoms, I’m not an angry person. I don’t hurl abuse or yell or throw things. I get intensely sad and self-destructive. PMS is far more dangerous than valium, taken as prescribed, could ever be.
But explaining this isn’t easy.
I walked in and asked for valium to help me sleep and manage my PMS symptoms. She asked me what PMS was. NOT a good start.
I explained, succinctly, my symptoms, and how valium helps.
She said she doesn’t prescribe valium. She said that I would get addicted if I used that drug. She said ‘everyone gets addicted’.
The great failing of medicine is that doctors see everything in majorities. If a study says that the majority of participants became addicted, the message becomes EVERYONE gets addicted. But that isnt fact, it’s assumption.
I told her I’d been using it for over a decade with no signs of addiction yet. I also told her that my life was constant pain, severe at least part of the day, every single day. That I spend 20 out of 24 hours a day lying down, and that’s a good day. That without sleep I can’t function at all. That I am not addicted, that I have been using it safely for decades, that my dosage hasn’t increased.
She read my file. She asked me about my flares. I told her I live in perma-flare. I told her I am on my own, taking care of two highly anxious teenagers. That I am on my fourth biological, with very little improvement. That my life is constant pain, and valium helps me cope.
She was sympathetic as she ran through my history. She asked me where I experience pain. I listed all the usual joints, the everyday ones – feet, knees, hips, lower spine, c-spine, shoulders, wrists, hands. Elbows don’t hurt today.
She asked me when I last had x-rays, because there was nothing on file.
I said many years ago. And then I asked her if I could have cortisone injections into my hips, because my hips are extra painful lately, and I have bursitis constantly.
She asked me how I knew it was bursitis. I told her because I know what it feels like, and my recent SPECT-CT showed chronic bursitis and potential tendon damage.
Mistake. She told me no to the steroid shots. She said you can only have 3 steroid shots into a joint in your lifetime. That is old information, and the guidelines have changed, but there was no point arguing.
And then we waded deeper into the arthritis history, which is always fun. I know they have to do this. They want to go through everything, but listing all my failed treatments isn’t much fun for me. And by the end of it they always come to the conclusion that there is nothing more they can do, which is also not a lot of fun for me. Ultimately it always ends with a defensive doctor, faced with a patient they can’t fix. No fun for anyone. She actually said that she was meeting me for the first time and that I couldn’t expect her to fix what can’t be fixed in one consult.
I said I knew that. I just thought I’d ask for the steroid shots, because I could really use some pain relief. And then she started explaining again. I told her I understood. I know it’s a dead end cycle. That I am waiting on a miracle. So could we discuss the valium again please. Because valium at least offers me symptomatic relief and a better quality of life. It relaxes me, improves my mood and helps me to sleep.
She restated her concerns about addiction.
But I’m not addicted. I take it for several days of the month, as needed. My dose hasn’t changed in ten years. It works well for me.
I even said ‘Please.’
She said she doesn’t prescribe valium, but she would prescribe Temazepam. Another benzodiazepine, which is similar to valium (diazepam) but shorter acting.
Shorter acting. Yes that makes sense, because I’m trying to achieve six straight hours of sleep. A shorter acting drug is absolutely the logical solution. Not.
The reason she is more comfortable with Temazepam is because shorter acting drugs have a lower risk of addiction.
In the U.S. doctor guidelines are to prescribe shorter acting formulations of opioids for the same reason – a lower risk of addiction. Which is the exact opposite of my doctors’ (GP and pain management specialists) policy on oxycodone. With opioids, the theory in Australia is that slow release formulations have less potential for addiction.
So which is it?
I wish they could get their stories straight.
Regardless of what the studies say, I am not addicted to anything. I don’t crave oxycodone, I crave pain relief. I don’t crave valium, I crave sleep and rest. I can stop taking either with no ill effects, except that my pain levels rise to unbearable levels, and I can do nothing but lie flat on my back and stare at the ceiling. Endlessly.
So life is better with these drugs. I’m not looking for a cure, I’m looking for improved quality of life. Hard to do when the pain is endless and the prognosis is grim.
Ironic that I used to be the kind of person that never even took a Panadol/Tylenol. Now I display ‘addict behaviors’, by walking in and asking for a specific drug by name. Unfortunately doctors can’t seem to understand that this is also the behavior of someone who has been taking a particular drug successfully for decades, and wants to keep taking that drug. Of course I’m going to ask for the drug by name.
Bottom line, I have temazepam. I hope it works. I need some sleep. I’m rambling now and I am not thinking straight. I cancelled my hearing aid follow up appointment because I am too tired and in too much pain to drive safely today. Had I slept last night, I could have made that appointment.
But now all I can do today is rest. Try to take a nap. I have been awake since 1am, so maybe I can sleep. That sounds good.
While I was reading this blog something hit me ( besides the emotional pain I feel for you when I read most of your blogs…that, by the way, always make sense) when I take oxi I have usually two or three hours since I really should have taken it. I am prescribed three a day. 10/325. I rarely take that many. but when I do take one it seems like it is sucked up by my pain. Obviously you can tell by my words that I am not a writer blogger but a reader blogger. I expect to feel ok, better, relieved, but I never do. I feel slightly better. And my rhumotologist gets that. I want something that takes it AWAY, at least for 4-6 hours. Nope…don’t have it. So I also get S-I epidural injections and meds to sleep and predsonide when I flare. I am suprised some mornings that I wake up at all after all the meds I took. So why, when we are living like this and are just occasionally numbed, can’t Drs. See that you are not asking for Valium 3 X a day X 30 days a month? TEll me the pros and cons, I am an adult not a drug seeker, and let me weigh the pros and cons and make my own life decisions. I hate that you go thru this Neen. I hate that you don’t have more support from and for your family and your community and your government. Next week I get my shot in my SI joint. They will be kind enough to put me to sleep and shoot me up and my body will suck up some relief. MY BODY MY CHOICE?…..no not really. Hang in there girl. You are a last straw to soooooo many. That is at least a consultation of sorts. Love you, T
Thank you Tina. You are always so kind and supportive. And you are going through so much yourself. When I was reading your comment I found myself nodding emphatically…the part where you say they are knocking you out? THAT’s the only time we don’t feel pain. I don’t think anyone can understand that, no matter how much you try to tell them. Even doctors. Especially doctors! They will use every ounce of their brain to try and disprove your statement ‘But you can’t ALWAYS be in pain’…’But you can’t mean ALL your joints hurt’ instead of using that brain power to try and understand! If only they would stop, truly imagine what it’s would be like to live with pain all the time, and then think about what THEY would do. Would they seek relief? You betcha. Would they seek opioids? Yep! Would they need something to help them sleep? well, yes…You make the most important point. Doctors should give us the risks and benefits, and then it shoujld be OUR choice. They are happy to give drugs that might cause cancer, ormight cause sleep driving, that people have DIED from taking…but not oxy. And not Valium. It’s all just what’s ‘in’ and what’s ‘out’. The science doesn’t back the hysteria. I hope your shots into your SI joint go well – and you get some long term relief. I think SI joint pain can be amongst the most disabling. I hope it helps!
I am with you on the “not everyone gets addicted”. I have had valium for approx 2 years and take it prn. It has really pulled me out of some tough flares. I have had the same bottle since March this year and I probably won’t need another script until the end of the year. People CAN take valium and NOT get addicted. Why are doctors so dumb????
64,000 dollar question ‘why are doctors so dumb’! LOL. (Cos they want to be 🙂 ). You take medications appropriately, that can’t be right!!! Your disability case is in a day or two isn’t it Tina? I will be thinking of you and sending positive vibes!!!
I traded valium for a different sleep aid and of course, it is just as or more addictive. The thing is people miss the difference between wanting to take something and needing to take it, I do not want to sleep at night, I need to sleep at night. Big darn difference.
YES! Excellent point Rick. Sleep is essential. I am feeling so much more energy today, because I got 9 hours sleep last night. I woke up three times, but I was able to go back to sleep. Thanks to Valium. I’d much rather not need ANY medication, but it is just that…need. I believe a lot of cases of depression are actually cases of under treated pain, or under treated insomnia. Doctors need to make more time to look at the big picture, rather than following the colour by numbers directives from some government umbrella organisation that has no idea of the real issues at the coalface.
Be careful on Tamazepam, Neen, I had some very strange experiences when I took it sporadically for a short period of time – including letting some people into my house who I would never normally let near. My ability to protect myself seemed to disappear. They woke me up when I was sleeping during the day ‘cos my kids were away and I needed to catch up on some sleep – I don’t remember answering the door just that they were there. I had a lucky escape – bad people – I must have given a good impression of being ‘with it’! I also had horrible dreams and waking hallucinations and would never take that drug again. It was 25 years ago and there weren’t any options. Make sure that you’re safe – Valium never had any effects like that on me the few times that I’ve had it – just feeling calm. This ‘drug seeking’ BS really gets to me – unless they get a chronic pain causing disease themselves so many drs just don’t want to ‘get it’.