First off, let me say that I love my neuro. He's awesome, very understanding, willing to give me his best, etc. The only problem is that he's really hesitant to give me any Rxs for pain meds. I can get tramadol from him, but that's about it, and I'm reluctant, I admit, to take it because I habituate (or get rebounds) so easily, so I usually don't take anything 'til the pain's a 9/10 and by then, I'm often ready for the ER because I'm losing consciousness.
I've heard good things from one of my friends about the Fentanyl (sp?) patch as it lasts for days, which would be awesome for my marathon migraines which can last weeks. (that's on top of my 6/10 or higher pain level for the past 8 years). My mom suggested talking to my psych about the patch first, as she and my neuro work with each other on me and some other patients. But I don't know how to broach the subject.
Thanks in advance,
I have had a terrible time in the past asking for pain medication so I really don't really know how great my advice would be... I am sort of jaded about the whole thing...
I truly despise the way that pain patients are treated by so much of the medical community... and due to the hostile environment that the DEA creates in America for doctors, it's not just the ignorant doctors that treat pain patients like sh*t, but it's good doctors too because their jobs are at risk every time they prescribe proper medications. Things are somewhat better here in Canada... but, not by much, and every time good doctors go to jail in America, doctors here in Canada get scared too and pain patients suffer here for months until the fear in the medical community settles a bit... and of course my heart goes out to the majority of pain patients in America who suffer every single day because of the hostile environment that the DEA creates for doctors and scientists. Sorry... I guess I'm ranting a bit... this is just a bit of a sore spot for me because the last time I needed a prescription filled for one of my most life-saving pain medications (and I really mean life-saving because I am honestly afraid I'll commit suicide by mistake when I'm at a 9/10 pain level), I had a bit of a hard time getting the prescription and it really freaked me out and I think that the idea of not being able to treat my very worst acute pain actually temporarily messed me up a bit this summer, like, it messed up my outlook on life a bit, I got sort of depressed in a sort of nihilistic way, just temporarily, but... the whole thing really freaked me out, and that's not good.
Anyway... umm... this shouldn't be about me... sorry... it just brought up some emotions and stuff... but, okay, back to the topic at hand...
The Fentanyl patch! One of my closest friends is actually on the fentanyl patch. So, I could maybe ask her about this for you... about how to approach this topic with a doctor. I will do that and get back to you on what she says. Also, if you want me to, I can ask her anything for you if you have any questions about it, she has taken it for a long time and I know it works great for her and she can tell you about any pros, cons, side-effects and other things you should know about if you are interested... I know that she has things to say about the brand name vs. the generic (the glue and the size of the patch can be different sometimes). Also, sometimes I found out that she didn't know about but I recently told her, did you know that it comes as a lollipop too? I thought that was kind of neat. But, the patch is the version of it that lasts for days, the lollipop version doesn't do that.
I think your mom's idea of talking to your psych about this first is a good idea, because if your psych approves then your psych can advocate this for you to your neuro if you have problems with your neuro and you think your neuro is being unreasonable. I mean, your neuro might explain to you a good reason why you shouldn't take it... but, if your neuro just says no without hearing you out or a good reason then it is likely your neuro just isn't prescribing it to you due to the fact that it is a pain medication and some doctors don't like prescribing pain meds, and if that was the case then your psych could advocate on your behalf. My neuro is one of those rare doctors it seems like who actually understands pain and pain treatment and so he advocates for me when need be... so, I think that getting your other doctor involved is a great idea.
As for how to broach the subject... I don't really know. If it were me, I would bring up my current daily pain levels and acute pain levels... also, in your case, bring up any breakthrough pain levels in your daily pain levels if you happen to distinguish break-through chronic pain from acute pain attacks... I don't know if you count them as the same or not, but, like, just mention all of your pain levels in every pain category is what I'm trying to say. Then discuss how your current treatment plans for each category is working and how satisfied you are with those plans... so, for the breakthrough and/or acute pain, I guess not very well and not satisfied. Then, also bring up any concerns or fears you have, so, how these pain levels are having an effect on your life (level of disability, emotional health, etc.). And then just make it clear you need a new and more effective break-through pain and/or acute pain treatment plan. That is when I would bring up the fentanyl patch. And, if you can say why you think it might be the right fit for you (long-term pain relief is something you mentioned above... other things you didn't mention but are reasons why some other people think it is a fit for them: not having to take pills at specific times every day, not as much break-through pain as with pills, low abuse potential).
A few things about fentanyl that I know because of my friend... You have to already be on a daily dose of an opiate to be prescribed fentanyl. Basically it's for people who have already been taking something like oxycodone daily or hydromorphone daily and they've started to get break-through pain with those medications, so they need something stronger and something long-lasting. But, since fentanyl is so strong, much stronger than morphine, oxycodone, or even hydromorphone... it can cause respiratory failure if taken by someone who hasn't already been taking a daily dose of an opiate for pain (it can still cause respiratory if someone has been taking a daily dose of an opiate for pain if they haven't become opiate dependent yet).
You mention that you currently take Tramadol, which is an opiate, it's a codeine, but you say that is all you can get from your doctor so I am just assuming that is the only opiate prescription you currently have? Also, you say you are reluctant to use it so I am just again assuming it is not a daily dose? So, although I am not a doctor, from the information you've provided I don't think that a doctor would prescribe you fentanyl and I also probably don't think fentanyl is the right medication for you at this point (although I am not a doctor and I may have misunderstood the situation! please let me know if I misunderstood anything!).
Now... I am not exactly saying that I think fentanyl is the wrong medication for your pain, in fact... from everything you have told me about your pain levels and constant pain, fentanyl seems very appropriate and I understand completely why you would want it... I just think that it is the wrong medication for your body chemistry at the moment if what I've understood is correct, I'm just worried it would kill you. But, that doesn't mean you couldn't eventually take it... I do know that you suffer from status migrainosus and so I know how much constant physical pain you are in and I want to help you find pain relief so if you think fentanyl would be a good option then you need to first get a prescription for a daily opiate. I can't really suggest prescriptions, but for my worst acute pain I take hydromorphone and I know lots of people in the chronic pain community who take this daily for chronic pain and one of my close friends takes this daily for chronic pain too. So, maybe, instead of asking your doctor about fentanyl first.. look into hydromorphone a bit, and if you like what you read, then ask your doctor about hydromorphone (or another opiate that can be taken daily for chronic pain, although make sure it isn't mixed with anything like acetaminophen... so no vicodin, no percocet, etc. because if it is mixed with anything like acetaminophen or another OTC medication then you will get rebound headaches. the nice thing about hydromorphone is that it isn't mixed with anything ever so it's safe for us migraineurs). After maybe 6 months to a year of taking the hydromorphone you probably could then get a prescription for fentanyl if you still needed/wanted it since by then your body would be opiate tolerant. BTW, hydromorphone won't cause rebound headaches so you don't have to worry about taking it daily, it is an extremely clean medication with an extremely low side-effect profile and, as far as opiates go it has a very low-dependency profile.
Let me know how it all goes and how it all turns out!
wow, thank you VERY much for that information. I definitely don't want to die while trying to control the pain, so that's good to know. Knowing about the hydromophone is good as well. I'm just getting really tired of dealing with the pain all the time, so I might bring that up at my next appointment.
I know nothing about the patch, good thing we have Marilee. :) Tramadol is one I have used, but it does nothing for my migraines, it helps my other pain, like muscle pain when the weather changes ect.
Keep trying don't give up. Ending up in the ER is not a good situation, I hope you and your Drs can find a better way. I am so glad the Diltiazem works as a preventive for me, and then Zomig for a migraine, and I add magnesium and fever few.
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