New Daily Persistent Headache Support Group

It is amazingly depressing to be in chronic pain, eh? What's also surprising to me is how, during period of remission (or when the meds kick in), how quickly the euphoria of being pain-free subsides and I forget how bad it was. And then, when the pain comes back, it's a complete swing in the opposite direction and I kick myself for not fully appreciating the good times.

Hey MaryR, glad you have had some adaption.

I just have no energy for anything.

My friends circle has dropped by 80%. Going out to 11pm now feels like a big one lol.

As exercise doesn't effect it and if anything improves it, most of my days energy is expelled in one big bang at the gym, but continual bouts of insomnia are starting to interfere with this outlet.

ACsmom: I have seen 3 neurologists, including one who just specialises in headaches, and been hospitalised for it, received botox etc

Our doc. told us, initially, that it should burn itself out in 2 yrs (avg.) Well..he still says that. I don't quite believe it since there are so many on here w/much longer cases!

I have heard from Raymond's mom and he is doing well. She emails me and signs Bridget's guestbook on caring bridge. He is still on meds. Hoping to be able to go away to college. But is controlled!!!

Way better would be awesome! Even if it can't be gone!

I don't know if I believe the burning out in two years thing...I think that is for some other types of headaches, but not NDPH in particular. Dr. Singer believes that I will have my headache until we find a cure for it and that it won't just got away on its own, as much as I would like that.

As of yesterday Lisa's headache passed the three year mark. I guess there is some lucky person out there who had a short headache, lowering the average!

I'm so sick of hearing about everyone else's headaches, lol. They have never yet been like mine.

Aww. Tell Lisa we feel for her (and you too)! Ryan's 4 year mark will come up in June. That's one anniversary we don't want to acknowledge!

Tortisegirl, describe your headache. Maybe Ryan's is like yours?

Yes, those "anniversaries" are not happy events! I feel for all of you too. ACs 1 year anniversary is on March 27th at 3:00 a.m. when she was awakened from her sleep by a two-by-four (figuratively speaking). On a hopeful note to all, when I said that I was posting, AC said to tell everyone that "my headache is a lot better!" Hope springs eternal.

Dr. Goadsby upped her flunarizine from 5 mg. to 7.5 mg. It will be another three months before we know if that extra increase in medication changes the landscape even more. We also just saw a cranialsacral therapist and will keep you all posted on how that works. Dr. Goadsby prescribed Axert as an abortive. Ac hasn't tried it yet so don't know if it will work as abortives have not worked yet. Lastly, AC is on her last pack of Microgestin Fe 1.5/30 with the hope that if she doesn't have a period for three months, that that will also help her head. That has been a trade off, since the side effects from the bc pills have been unpleasant at best. P.S. When AC was 10, she had a 6 week headache that spontaneously remitted. It was also bilateral, and also followed a flu/virus. There is hope.....

Mine varies day to day, but it's generally a lot of pressure all over my head and neck, and sharp pains at the temples (more migrainous). Hasn't stopped in 3+ years, and some days it gets pretty bad. I also have migraines on top of it but don't even know how often I'm getting them as they are not acute. The pain comes in waves--I'll be at a high level for a few days, then it may taper off, then back up again. It gets worse throughout the day. I have mild nausea at times, and general fatigue. Neck spasms and tightness controlled by Zanaflex now. The migraines have been reduced by Nortriptyline, but nothing has ever touched the headache besides pain killers.

Maxalt will help the migraines some, but I will still have the headache and neck pain once the sharp pains are gone. I agree with the helmet analogy as the pain is really all over, even the sides of my face. I did not respond to occipital neuralgia treatment so that was ruled out. My pain will travel throughout my head during the day as well. It's never exactly the same, and actually rather difficult to describe anything but what I'm feeling at the moment.

Anything like Ryan's?

I hate to hear of the usual headache people who complain that the Tylenol takes too long to work (but then get full relief with one dose). I wish I just had acute migraines because those are much easier to treat than the waves of pain because by the time it's spiked it's too late for Triptans to work (and only Maxalt has helped so far).

I think I'd be a good candidate for daily painkillers, but that's another story! I can actually get pretty decent relief with them when I am not too tolerant.

Tortoisegirl,

Unfortunately no, that is not like Ryan's headache. His is a mohawk pattern and is sharp. When it gets really bad it travels down his forehead and into his temples and used to travel down his neck, but doesn't anymore since he had the ON decompression surgery. He just had the SON surgery on Wednesday, so far he is feeling pretty good and isn't sure if his "normal" headache is there or not since it's overshadowed by surgery pain and swelling and vicodin, etc. We'll see.

Maxalt was the only abortive that worked for him too except when he went back on Topamax a few months ago the Maxalt stopped working. Topamax is the only drug he takes for the NDPH and since the surgery he's taking halves of Vicodin for the surgery pain. We're anxious to see how this all pans out with the SON surgery.

Daily pain killers are a tough one. Ryan used them when he first got the headache but then ended up with rebound headaches.