New Daily Persistent Headache Support Group

So I went to my local neurologist because the docs at Montefiore couldn't get me in for 6 months at a time and my doctor stopped taking my insurance... 3 years of visits and no love for me. Anyways I told my neuro that I wanted to go off my Nortryptline to see where my baseline headaches were so I could decide what to do next. We came down quick from 60 to 0 in about 5 weeks (the other docs wanted me to come off very slowly).

Well it has been 3 official days with no medicine and I am feeling great. Headache is still there but not nearly what I thought they would be. Let's hope the pain doesn't sky rocket once the meds are totally out of my system but I am keeping positive. As anyone gone completely off their meds and feel ok?

Having had my headache for only seven months (and the NDPH diagnosis for 4), my history with medications has been erratic at best. But in general I feel that my pain level is low enough on its own (average 4-6 daily with some spikes of 7 and 8 here and there - storms, hormones, etc) that I'm not taking any "preventatives" at all, and only using DHE-45 and/or Phenergan injections PRN when the pain stays high for a number of days. Yesterday I got some other drug samples to try (Sumavel DosePro injections and Treximet) as abortives, but since my pain's been lower today I just put them in my stash. When I was on medicine daily I struggled a lot with side effects, and on one med, with higher pain overall, so it makes sense for me to stay off of them as much as possible. Hope you continue to do well off meds! I'm glad it's been easier than you expected.

I've gone med free at times because I haven't found meds besides opiates & muscle relaxers that help (on them currently). When coming off meds that didn't help, I'd often get increased pain just from the med taper. My Nortriptyline withdrawal didn't hit until quite a few days after I took my last dose. It was pretty icky, but then again I only did 2 capsules down to 1 capsule for a week, then none. I was smarter for my Cymbalta capsule withdrawal and broke them open the capsules to take some out and put them together. Still having very minor withdrawal brain zaps every once in awhile a month? later. I've heard this isn't unheard of. Nortriptyline was something I was on for a year or two and once I got off it I realized it wasn't helping! I've been much better since than of really evaluating if a med is helping me. Good luck!

I've actually been medication free since December of last year. No meds ever made a difference for me with my pain, but being off of them and all of their side effects make my whole body just feel better. I think by doing that I actually help myself, because I'm able to ignore/fight off my pain a little better. Thats why I try really hard to take good care of myself (good diet, exercise, sleep) because I know if my WHOLE body feels better, I can at least feel better about my headache, even though I'm still in pain.

I am almost a week out and am feeling ok. It's like I took a ton of cold medicine and you get that jittery feeling. My headaches have been manageable, I don't think I will really notice for about 3-4 weeks for it all to get out of my system. I haven't really been able to workout this week because of the "tweeked" feelings I am having but I am pushing to start back on Sunday.

This Nortriptyline was a but kicker, made me gain weight, got sluggish.. I can't wait till I am free!

lilhannon- do you take any meds for exacerbated headaches?

I am really happy to hear that you are doing so well getting off it. I always wonder how it will go (though I know different meds are always different) and it is nice to know that sometimes it is manageable and the headache doesn't go crazy.

Well said lilhannon.I would second what you said. My daughter has had NDPH for over 8 years. She's also 24 and has been off medications ( she tried over 50) for over a year. Likewise nothing ever made a difference and being off them and all the side effects they caused she does feel better. Not headache free but through diet, yoga and meditation she's able to handle the pain and her whole body also feels better.

When I have worse pain, I usually just take an opiate or other narcotic and try to sleep through it. I do get migraines about once a month with aura, but as soon as I get the aura I take imitrex and that usually stops it before it starts.

The only things I take on a daily basis are the following

Women's Multivitamin

Calcium + D

Fish Oil

Vitamin B2/Riboflavin

Melatonin (for sleep)

Claritin (I'm allergic to everything)

My diet consists of mostly fruits and veggies with one or two proteins (not necessarily meat, its expensive and takes time to prepare) mixed in. I also run 4 times a week and do some small aerobics workout everyday.

i was taking both topamax (150 mg) and nortryptilin (75 mg) every day for about 6-7 months. I moved in with my boyfriend(now husband) and misplaced my meds during the move, so, I was off them for awhile (about a week.) I chose to stay off because of the high dose, and not being able to re-titrate up, as i only had the 75 mg caps of pamelor and 75 mg of topamax. I was off of them for about 4 months, having infrequent headaches, and then about 2 months ago, stated having them full-on everyday. So, now I'm back on the nortryptilin, and it's not having any effect.

I've been hopitialized several times and go home form work early at least 3 times a week because of the pain. I've had it with drugs and side - effects!!!! The topamax gave me alot of cognitive problems, which was bad, because I was taking several medical classes at the time, and my grades were suffering.

At this point, I'm ready to try a more radical treatment, since I've been on almost every prophylactic medication that has been suggested. I do take melatonin for sleep, and i have found that helps.

How are you going now Lindsay? I'm also med free at the moment and doing quite well. I know my last lot of meds were helping for quite awhile and lowered my pain dramatically but being off them I've being going OK. I may go back on them at some point but am happy not to be taking a heap of meds for once!