New Daily Persistent Headache Support Group

As some of you know I have been exploring pain management. Today I discussed this with my PCP, in response to a recent neuro visit where this was actually recommended to me. Surprisingly, my PCP agreed. Also surprisingly, his first drug of choice was Methadone. We're starting me on a very low dose just to see how I respond, and I go back in a couple weeks I believe as I was only given that much. Don't think it's going to be near a therapeutic dose. I'll start it tomorrow night (only dropped off the script as my pharmacy has a horrible backlog always). Our goal is to take the edge off my pain so I can be more functional in life.

For some reason I'm not as excited as I thought I would be, as I understand this could turn out to not be a good option for me, it could not work, etc. My PCP seems really willing to work with me and suggested another couple options such as MS Contin or the Duragesic patch, but I said I was willing to try the Methadone first. He is willing to work with me instead of having me go to a pain dr, and seems to have some experience in this. He seems to trust me and already said he thinks I am low risk for addiction, etc. I have also heard Methadone is better for those who may build quick tolerance, such as me due to age and past experience.

Just thought I'd let you all know my update. I'm sure people will have all sorts of opinions on this as it seems a no-no in the headache community. I only told my fiance, and plan to keep this between us because of the stigma and potential repercussions in my life/work.

Side notes: He thought my thyroid blood work was fine and we're not going to do anything about it. Yay! I am also currently withdrawing from Nortriptyline (by choice) and have all sorts of weird side effects....fun times. It can't last much longer though since it started on Saturday.

Thanks for the update. I hope that you are able to find something that helps. I know a lot of people don't really like the pain management approach, and it isn't high on my list of things to try. You have already done the things that are high on my list though and have had bad reactions to whole classes of meds (I don't have that problem so I can take a lot longer trying each different one out for effectiveness) so it makes a lot of sense for you to try something to get/keep your quality of life up. You have done your homework on this so it isn't like you have illusions that these meds are the perfect fix without side effects or problems either, but they might help where other things haven't for you. Best of luck, and I hope your Nortriptylene withdrawals don't last long.

Thanks, Mary! Feeling better with(out) the Nortriptyline today. I was getting sweats and shakes and everything too. Wasn't exactly expecting that. Haven't had an increase in head pain yet either so maybe I'll be able to stay off it. I have had insomnia even with my muscle relaxer (it wears off in the wee am and I'm wide awake), so I'm hoping that'll go away or I'd be inclined to go back on it or try some other sleep options. Thankfully, the side effects I was attributing to the Nor. went away so I guess I was right again on that.

I'm still in shock that my dr agreed to this. I definitely don't want to see it as my future way of life, but if it can get me through a few years until there are better options I'm all for it. Thanks again for the support, especially considering your viewpoint. Best wishes.

Like I said, my viewpoint is for me...not everyone is in my position. Other meds are helping me so it doesn't make sense to go that route. I think that is one of the things that makes NDPH so hard to treat is that everyone reacts so differently to the medications. It isn't like having an infection where antibiotics do the same thing in pretty much everybody, nothing used for NDPH works for everybody.

For what it is worth, I heard (from my neuro I think) that a new headache drug is expected out sometime in the next few months. I don't know if it will be any good yet, especially for people with NDPH, but they are still developing new meds.

Mary, that's cool. Any idea of the name of the new drug?

I hope the methadone will give you some relief. You get to the point where you are like ok, enough already! When we agreed to try oxycontin then later (and not at the same time), opana, a drug with morphine, part of me was like - I can't believe I am letting my teenage daughter try these medications. But the other part was saying - we have to do something to help her with her pain. Unfortunately these drugs lost their effect and we had to keep increasing the doses. It wasn't hard to stop because in the end they weren't helping at all. We had the same experience with Percoset.

I don't know much about the methadone. Will it effect your performance at work? Or should I say will it effect your work more than your headache does already?!

Apparently the Methadone should be similar to any other opiate. I am very lucky--with Percocet and similar, I can get some pretty good relief with minimal side effects. It usually tends to make me hyper not sleepy, and I don't have any trouble with my cognitive function, etc. It makes my constipation worse, but I find Miralax pretty helpful. I wouldn't let myself take a high enough dose where I was out of it, not able to drive, etc. It's more to hopefully take the edge off the pain. My doctor was glad I had realistic expectations such as this.

I am VERY affected by my headache at work. I have the hardest time concentrating. I'll tend to stay very busy to take my mind off the pain, but some days I just kinda space out at work and honestly am not productive. My work is project-based so I have long-term deadlines and some days, I have no meetings and can just do my own thing. Other days like today, I was jumping around on three different projects and meeting with co-workers to solve problems. It wasn't a good head day for me. I am an engineer, and have a really tough time making it through everyday at work.

I save my pain med days for at work, so I'll end up taking Percocet 2-3 days out of the week, and then sometimes Maxalt will help if it is more migraineous pain. The pain is much more manageable for me at home, on weekends, etc. If I did not work, I probably would not have been so adamant on this because I could manage better (although I have no social life and my relationship let alone romantic life with my fiance suffers). I am assuming this new med will increase my productivity at work, unless I end up getting undesirable side effects, and then we could try something else. I'm most worried I'll end up getting nausea because I deal with this daily due to my condition, and any med seems to make it worse. I don't deal well with nausea. I can actually deal with pain better.

To this day I still have no idea how I made it through college. My pain was a little worse then, and I hadn't built up such a pain tolerance. It must have just been the momentum of it all or something. My grades sure did suffer though, and I didn't get the help I should have (accommodations for late work or delaying a test). You could tell what tests I took on bad days.

Supposedly the Methadone is the best opiate for needing less upping of doses due to tolerance. I assume because of my age and current opiate tolerance, this was a factor for my doctor's decision. It's kinda a scary drug though. I hear that it has such a long half life that it can be difficult to get off of and you can withdraw for several weeks.

Lisasmom-I did not know your daughter had tried daily pain meds. I'm sorry it did not work out for me, but especially at her age, the tolerance is very common. Also for some with head pain, the opiates just don't help them significantly.

Mary-Is it telcagepant? http://insciences.org/article.php?article_id=3660 Supposedly it'll be coming out soon for acute migraine treatment.

Planning to take my dose tomorrow morning. I read up, and the doctor just has me on a "loading dose", so I'm to start with 1 pill once a day to start to build it up in my system, and go up to 2 pills a day before I see him next in a couple weeks. I may only be getting pain relief from that for several hours or most of the day. So, I'll start by taking it in the morning so at least I may get some relief as I'm awake. Hopefully I'll be ok at work with it tomorrow, but I didn't want to wait until the weekend. We'll have a house guest anyways. Eventually, I should be dosed at 2-3 times a day if necessary. http://www.mywhatever.com/cifwriter/library/eperc/fastfact/ ff86.html

I've had some bad side effects at work before. I remember one day I started on Benicar where I was almost passing out at my desk sitting down! It got better as the day went on thankfully, but it was noticed that my head was down on my desk and I was asked if I should be driven home. My co-workers think I have allergies and get sick a lot, and get migraines occasionally. All are true, but not the whole story. I haven't told anyone the extent of my problems...

I never drive though if I can't handle it (rather rare for me).

Best wishes everyone.

Post edited by: tortoisegirl, at: 04/07/2009 19:29

I don't know the name...I think he mentioned it, but I wasn't listening very well at that point. It was toward the end of the appointment and everything was starting to blur. I just remember that there was something coming that we might try later if it works well on other people. Sorry I can't be more helpful.

Reading the little thing about it, it looks like it might be a lot of use to me since I have so many migraine symptoms, so that may very well be what he was talking about.

Post edited by: MaryR, at: 04/07/2009 19:47

tortoisegirl,

My husband also tried daily pain meds when his headache was new. First he tried Vicodin, then percocet, then darvocet. None of the hard stuff. He got some relief but soon the rebound headaches outweighed the original headache and he had to stop.

I hope the methadone works well for you, however. Let us know how it makes you feel tomorrow after you start on it.

The rebound issue is really interesting. I have heard that the Tylenol is more likely the culprit rather than the Narcotic, which would explain why a long-acting med without the Tylenol may be a better choice. I plan to keep a close eye on my pain and see if I notice a change in pain type.