pain control- what works

Hi All,

For the past few weeks, I have been having more trouble dealing with the pain from the headaches. I am not sure why this is as I have been dealing with constant pain for 12 years now. Though my pain dr has switched some of the as needed medication (now on Tylenol 3 rather than morphine immediate release), the long acting medication- MSContin has stopped working. I am not sure what to do about this. I hate the fact that it feels like I am in a constant battle just to deal with the pain and it is taking more of me to deal with it right now. My pain dr is not sure what else to try (or doesn't want to try anything else.) The only medications that have worked over a long period of time for pain are tylenol 3, morphine, and dilaudid. For those of you on long acting meds- what has worked?

I also use distraction- reading, soft music, talking to friends, and other methods to help with pain and I try to deal with it as best i can. I just need some advice right now.

I have a call in to my neuro to set up a Depakan IV. The pain is just scary right now.

Pain free days,
sailingm

I understand how hard it is for you, and I'm so very sorry, Sailing Muffin.

Anna hasn't had any success with long acting meds.

Cheryl

I feel your pain really. I have to say, I havent really found anything either.
I have triptans which help, but they dont get rid of the pain. They take the edge off.
I am sure they used to work better, but even so, the side effects mean I still cant function.

I dont have anythng else. My experience in england is that its triptans and thats it.

I hope you find some relief soon.
We are in a terrible place.

I get by with vicoprofen (hydrocodone + ibupofen) and Toradol injections.

Charlotte

sailing,

i know the electrophysiologists frown heavily on opoids when treating syncope.

In general, who doesn't frown on opiods? Most doctors don't want any of us taking the amount of medication we take but we have to in order to function. I hate it. I'm sorry to hear your suffering, SM.

I know your medical condition is far beyond my understanding as it is much more complicated than my own but I take Fioricet with Codeine. I find it helps a lot of my head pains except the most excuciating migraines. Those ones are resistant to most everything including Percocet though.

I understand with syncope you may be unable to take a barbituate. I'm sorry if thats the case, but I figured I'd throw it out there.

I hope you find relief soon. Feel better..

lovegia,

there's not a whole lot that i can take due to some nasty side effects, so i'm limited to opoids like hydrocodone or dilaudid. i take such small, small quantities that it doesn't have an impact for my syncope. and you're right, just about every doc asks about how much i take, which is minute.

i can't take triptans because it could trigger a heart attack or artery spasm (along with ergos).

even the preventatives like beta blockers, have been suggested to be cut in half--they help keep my heart rhythm normal and with the heart's function. they also work on my migraines, but they can cause me to faint.

go figure.

there is no easy way finding a med. the side effects for all these meds are quite unpleasant.

-mgb

I've tried every type of opiate except Fentanyl/Fentora. What works the best for me is Methadone for long acting and Opana for short acting. Everything else either wasn't strong enough (built up tolerance to Percocet and Codeine), caused too severe of nausea, or didn't significantly help the pain at as high of a dose as we wanted to go. I suggest finding a more aggressive doctor and working down the list to see what works well. Why I say find an aggressive doctor is at our ages (I'm 23 and I believe you are also young), we build high opiate tolerances. Doctors are reluctant to allow dose increases, but they are necessary to get any significant pain relief (50% does a great deal for me).

If you quit a med before even working up to a therapeutic dose than you'll never know if it could work. You will need to increase doses of any opiate (except maybe Methadone and similar) over time due to tolerance, especially when you are young. Over treating the pain is another reason to need to increase doses too. Tolerance was a reason we chose to try Methadone and thankfully I do well on it. I think you tried it? What was the issue with it? You will need to discuss the pros vs cons with a doctor on escalating doses and meds vs. your age and the need for prolonged opiate use. My opinion is that the escalating of doses is not an insurmountable problem because there is not an upper dose. Without overdosing the amount you take shouldn't be a problem. I always find it funny how people will say that so and so takes an amount of opiates that would kill me. Of course, if they are in pain management they will have such the tolerance that what they take and function on could kill you.

I honestly think you need a new doctor if they are out of ideas without increasing your dose or trying something new (besides adding in Codeine as a short acting). Did you even have a short acting med before that? Having your long acting med plus a short acting one for as needed (how often this is used varies from multiple times a day to a couple times a week) is very typical in pain management. What specialty is the doctor you see for pain?

Are you on the Chronic Pain forum on BrainTalk? I find it helpful for the pain management side of my headache condition.

Best wishes.

I think there is a bigger difference than I first realised between the drug options here and in the US.
I dont think I know anyone that gets these opiates.
I am sure some will correct me if I am wrong...

Hi All,

Thanks for the suggestions and advice.

I have tried everything except longer acting dilaudid. Methadone made me a zombie. Morphine has worked well for about five years and I am on a smaller dose than I have been in the past. For the first six years, I only took as needed pain medication. My neuro eventualy switched me to longer acting meds to keep me out of the hospital. Now, I am searching for something that works. I am going to talk to my neuro and check in to other pain drs.

I have an IV od Depakan scheduled for tomorrow and am hoping that helps.
I would love any other thoughs on this topic.

pain free days,
sailingm

Have you tried Opana (oxymorphone), Fentanyl patches, Actiq suckers, Suboxone, and any different formulations of Morphine other than what you've tried (like Avinza)? Just checking. Have you been allowed to increase the dose significantly to see if it helps? Best wishes. Hope the IV helps.

Hi All,

Again thanks so much for the advice. I have tried several long acting pain medications:
Oxycontin (worked for about 4 months,
dilaudid as needed (worked for four years),
Methadone (made me a zombie- on it for 3 weeks),
Duragesic (depression and made me mean- on it for one month) and
MSContin (worked well for 4 years.)
(I know I have run the gamit and I do not want to sound like an addict or anything like that. (I have never had any problems with addiction/abuse of medications. These have been tried over the last several years.)

Most of these were prescribed by my neurologist, not a pain doctor. I also want to point out that it was a trial and error thing over several years. The morphine is the only drug prescribed by the pain dr. (From about 6 years, I had a wonderful neurologist who treated the pain as well as the other parts of headache. Unfortunately, he lieft to become a hospitalist. My current neurologist felt that the pain was "out of his league and referred me to the pain dr.) I have been seeing a pain physician for about 2 years. I am actually on a smaller dose of medication than I was when I first saw him.

I am currently on MSContin 30mg twice a day with Tylenol 3 for breakthrough. Though the codeine is working a little better now, nothing is really controlling the pain. Right now, the headache ranges between a 7/10- 10/10 daily. I consider a 7 to be a good day. I am at a loss for what to do. I am so scared and tired of dealing with the constant migraine pain and fainting that I do not know what to do. I am 29 and my pain dr always has the same answer when asking him about raising the dose or changing meds- "no, you are too young- let's see how this works." Nothing changes and it is justhorrendous. I did ask him about trying dilaudid or another pain medication for breakthrough pain- but was told that "dilaudid is only for post op pain and not for any type of chronic pain." I'd like to try something else- even a different preparation of morphine, but I doubt this is going to happen.

I don't know what to do and right now I am wondering if the pain will ever go away or if I just need to accept the fact that I have to live in this much pain. I don't want to live like this. I want to get the pain under some control. I am just not sure how to do that right now. I have an appointment with my neuro coming up and maybe he could refer me to a another dr for a second opinion? What do you think?

Sorry if I sound like I take too many medications- I just want to function. Thanks for letting me vent.

pain free days,
sailingm

Could someone explain to me please?> What is a "pain Doctor" exactly.
Thanks

A pain doctor will only see patients being treated for pain, and either prescribe opiates and other medications, perform injections or other treatments, or both. They may be an anesthesiologist or other specialty. The powers at be want to move to have all people that are being prescribed opiates to see a doctor like this.

Sailing, Sounds like you need a new pain doctor. I see that you still have some options left. Especially, to find someone not afraid of your age (I got my primary care doctor to start prescribing me long acting opiates last year at age 23 and he hasn't been afraid to increase the dose so I can get pain relief enough to be functional, but not overtreat). I don't think you've tried too many meds either. That is what it takes. I have you beat. Best wishes.

I found it interesting to read this today:

http://199.201.145.187/forums/showthread.php?t=83112

Validation for a med that is prescribed for unbearable suffering (including head pain).

Cheryl

Not for nothing SM but I have been saying the same thing for a bit now. I strongly believe that you should switch PM doctors IMO. If you feel you have a connection with your physician by all means continue treatment with him but from your posts it just doesn't sound like it.

I know that it is difficult getting to and from your appointments because of your syncope. For some reason I imagine you living in a rural area so I don't know how much of a possibility it is for you to find another doctor but for your own health and happiness, I really think it is worth looking into. I hate seeing a friend suffer through this.

I hope you find relief in some way. Please keep updating us on your situation. Best wishes to you.

Hi,


Thanks again for the advice. I live in a medium size city in the southeast. My neuro and primary care drs are good, but the pain dr i am seeing does not seem to understand the severity of migraine. There are only 2 good pain drs in town. (an immediate family member sees the other and he is ok, but would probably not be the best dr for me.) I am kind of stuck between a rock and a hard place right now. The other option would be to see if there is anyone at the medical school about 1.5 hours away who treats headache pain. (My old neuro was located there. The next step is to talk to my neurologist and see what can be done. It is possible that he would be able to write for the medication or at least talk to the pain dr.

I know there are some other options, but right now, no one really seems to want to deal with the pain. Right now, I would be happy to try almost anything if it would help. I also think there has to be some connection between pain and fainting. I know that having one under some control would help.


Cheryl-Thanks for the link. How do I get to the article? I have bookmarked the forum though, as it sounds intereating.

Pain free days,
sailingm

He didn't give the article, but you could join Braintalk and send him a private message, asking him for it. Or ask in a post.

One of my "leaker friends" on a leaker forum saw Dr. G last week (along with her hubby). Dr. G was pretty teary over his wife's current medical condition. He talked to them about it. I feel sorry for him. He has a big practice with a lot of people depending on him. And his wife is very sick with brain cancer.

I know you are between a rock and a hard place. I feel for you.

Anna has been able to try many meds, and the latest one helps the most. But not enough to make her functional. Just something to give her a somewhat better quality of life from absolutely horrid head pain. Her head pain is resistant to the best of meds, like many other Chiarians we know. I heard that a veteran pain doctor told a Chiari family that Chiari pain is just about the most difficult pain they treat in the pain clinic.

Cheryl

Howdy Muffin

I see that you have not tried the slow release, long acting morphine sulphates such as Kadian. I swear by it - effective pain relief (you know the peak and valley model, don't you?) and NO impairment at all. Talk with someone about Kadian or the other slow release morphine sulphates available. A little dab will usually do ya.

If you are willing to do almost anything, than what about finding a new doctor in the city 1.5 hours away? What is your transportation situation like? Unfortunately it is rare to not have to go in monthly. My doctor finally moved me from monthly appointments to going in to pick up my scripts, but its still a trip there. If you can't convince your current doctor to let you try something new or increase doses, no progress can be made. Another option is consulting with a new doctor 1.5 hours away, and after a few appointments see if your neuro would be willing to write the scripts that the pain doctor recommends. I have something similar--my neuro recommended that my primary doctor start me on pain management meds although he wouldn't write the scripts himself. That recommendation was enough to convince my primary that it was the right choice as he had referred me to the neuro as he had ran out of ideas (I had seen many neuros before but not since moving to a new city). Best wishes.