What is with all these drugs in the news the past week?!?
Now Neurontin, an anti-epileptic drug that is used to treat some forms of Chronic Pain is under fire. A lawsuit in the US began yesterday with claimants saying this drug is being misrepresented as a pain killer.
Sigh… Am I the only one that starts to feel a bit hopeless in the quest to find proper treatment? I have been on this drug before, and I didn’t benefit from it. It didn’t help with pain control in the least, and I experienced a lot of nasty side-effects from it… SIGH… just one in a group of over 30 meds I have tried that haven’t worked for me.
I do know people who have said that it has made a difference in their overall pain though… that stats are 1 in 5 feel a difference? It is such a crap shoot – us finding what works… we are all so different!!
I just thought I’d pass this article along, considering we have been speaking a LOT about medication here at Graceful Agony in the past weeks…
The past few weeks sure has given me a few things I need to discuss with my medical team next Monday!!!
There has been discussion about class action suit against mfrs of neurontin for years now, for promoting its “off label” use for pain because it was ONLY FDA approved for use as an anti-seizure med, not for pain.
it has lots of side effects and i suspect the class action suit focuses on that and on the “improper” drug mfrs’ encouraging doctors to use neurontin for neuropathic pain, though not FDA approved for that, and then having some patients suffer serious side effects.
All medicines can have serious side effects for some people. Truth is i have seen clients really helped by neurontin. it gave me hot flashes and night sweats (way before “the change”) and made me dizzy. it did not agree with me in other words. i still think it is fine that my dr tried it … if it had worked it would have been great; lyrica is a “cousin” drug to neurontin, but its approved for fibro use so people can get an RX for it and then pay a ridiculous amount of $$ every month for it cuz it is not available in a generic due to the patent laws. Go figure.
Thanks so much Lori for explaining all of this! Do you work in law?
I agree that all medicines can carry serious side-effects… down to aspirin and Tylenol, it isn’t just the HEAVY hitter drugs! So it is important for all of us to stay educated and advocate for our own health.. Nobody knows our bodies the way WE do! I had the same experience with Neurontin as you did, sweating BUCKETS at night, dizziness, and I felt like my brain was being zapped with a cattle prod, it was such a bizarre sensation. I gained an INSANE amount of weight on it as well, but in a VERY short period of time.. I swelled up, and that hurt my joints more than they hurt originally, so I discontinued it. I am on Nortyptilene now for the same reasons I was on Neurontin… It has made a marginal difference at best, but I am still working with it.
I know so many people who have said Lyrica has been the worst drug they have been on in terms of side-effects, but it has helped some others… It can be a tough decision to make when it comes to finding a treatment plan that works for you, but all we can do is stay informed, and make the best decisions possible for US… I wish there was a cookie cutter solution, but there just isn’t, is there?
HUGS! I hope you are doing okay today, and made it through the weekend… thinking about you!
I can’t compare my pain to your because our situations are different but about 2 years ago I started taking an herbal product called Phenocane for my pain and I don’t even look at pain meds anymore.
95% of the time, the Phenocane works for me. I can take as much or as little as I need.
I am so glad I no longer have to try all the different medications for pain. That was a horrible time. Side affects galore for me.
Even the sleep medications caused me major problems from seizures to addiction.
I found something herbal for that as well that works.
I am dismayed, disappointed but not surprised at what is going on within the pharmaceutical world today. Somewhere along the way they seem to have lost sight of those they are trying to help and instead are focused on the financial rewards.
It is discouraging to say the least.
I wonder if Phenocane is available here hon? What is in it? I would be interested in finding out.
I have tried SOOOO many natural products (and yes, magnets are natural too), but none of them have made the slightest difference. I think because I have a multitude of diagnoses, they all feed off of one another… And I can never get to the root…
It is discouraging…. but this chicky isn’t giving up.. I think it is SO important to stay as educated as possible though, that is why I pass these links on to people here.
How are you doing? Feeling any better?
XOXO
Great, its one that I am on…2400 mg per day. Not sure if it helps or not…since i started the oxy and percocet at same time…ugh.
thanks for the info!
tammy
http://spicyt.wordpress.com
You are welcome Tammy! I think it actually works really well for some, and not great for others.. I think the issue here is it being marketed as a pain relieving drug, when it is off label for that purpose only – and shouldn’t be primarily marketed that way if it is for epilepsy primarily… I have heard that some people do really well on it… I wasn’t one of those people though.
HUGS!
What do you take when you’re so sensitive to medications that you don’t feel you can take anything? That’s where I’m at….
I was ultra sensitive to meds as well, and unfortunately i didn’t have a choice but to build up tolerances… it was a really hard road, for about 6 months for each med, but now I am over the worst. I still experience side-effects, but they have just become part of my life. I wouldn’t be able to tolerate the pain without my meds, so they have become a necessary evil for me.
HUGS
My mother takes neurotin for seizures (not chronic pain). I tried it once, but it didn’t “do” anything for my pain.
You are lucky to have an integrated team and center to assist you! I have a great “primary care physician” as they call them in the US. It was just be luck; this doctor believes I’m in pain, is willing to listen to my research findings, gives out samples to try before prescribing a medication, and generally is compassionate, understanding, and caring. In the US, health insurance providers (if you have health insurance) decide what kind of pain treatments you can receive.
For many people, such as myself, there are co-pays, out-of-network expenses, and now many of the pain management doctors/centers don’t accept health insurance (or a limited number of plans) which means unless you have the money, you don’t get the treatment. A nerve block several years ago helped to dull the facial pain, but we can’t afford a second treatment now that the first block has worn off (as I was told would happen).
I am thankful that I don’t have the kind of pain you, and others such as yourself, have to deal with. My is centered in several areas, not my whole body. I am impressed by your survival instinct, and skills, as well as the insight, informative and expressive blog you write (despite your pain).
((((((((((hugs)))))))))
You are always so sweet, and your encouragement means the world to me! I cannot believe that in the US it is so much harder to get treatment! It is very difficult here because of wait times… The wait for the Chronic Pain Center here is over 2 years – and I am just lucky enough to live in the city where it resides… there are only 2 major pain centers in Canada, so I have no idea what people do in all the other cities across the country.
I have been seeing my Doctor since I was 13 years old (22 years ago), and before that her father was my Doctor, so there is nobody better than her than understands my health… I have had MULTIPLE health issues in my life, starting from the day i was born, so it is nice to not have to explain that to her, she understands fully the journey I have had….
I hear of so many people in the US that are suffering harshly and silently because they just cannot afford treatment, and it makes me so sad… We don’t live in a 3rd World Country… We pay taxes, and are valuable members of society, and I think health care should be our RIGHT, not an option based on if we can pa for it or not!! I can’t imagine!! My meds are very expensive, and I pay for certain treatments… but I would NOT be able to see my Doctor if I had to pay upfront for it…. I pay my health care premiums each month, but I don’t have to pay above and beyond that for access to my medical team.
I will remember how blessed I am today, because I know there are people out there that don’t have access to the same medical treatment….