New Daily Persistent Headache Support Group

Hi, I haven't posted in a while, my pain has kept me from doing even the most basic things. I am getting very frustrated, I am doing everything my doctor tells me to do, taking all my prescribed meds (Topamax, Namenda, Maxalt), but my pain is still very severe, I'm talking in the 7-9 range every day! My neurologist is even getting stumped, he doesn't have new ideas for me, so what am I supposed to think?

Does anyone have any ideas for me to suggest to my doctor to try?

Is the doctor only interested in pharmaceutical solutions? I have looked through blogs and websites on NDPH and found that someone was helped by craniosacral therapy and another that was helped with physical therapy and yet another that found relief with acupuncture. I'm guessing that what helps one person may or may not help another. I have tried all three of these with little or no change in the frequency or intensity of my headache, but my acupuncturist is able to decrease the intensity of the really bad days, days that it feels like a migraine (I have been hospitalized for that kind of headache). Just some thoughts that I had when I read your request. I hope you find some relief soon.

Has your Dr suggested changing your diet? My neurologist suggested a strict gluten-free diet and no caffeine. Sometimes your diet makes a big difference in your pain level. You may also want to ask your Dr's office to refer you to a more knowledgeable doctor. I went through about 5 neurologists before finding a decent Dr. Whatever you do don't give up.

If your neuro won't do anything, either make a list of meds you haven't tried and do some research to back it up from the lists here, or find a new neuro who is more patient. Of you are stumped on what meds to suggest, you can post everything you've tried and I'll try to name some. There are hundreds of meds that could be helpful. Also, you can look into a pain management type doctor who may try injections such as Botox, trigger point, or occipital nerve block. On the other approach, if there are any alternative treatments you haven't tried (massage, pt, chiro, cranial sacral, acupuncture, diet/exercise, identifying triggers, etc), look into them and pick one.

I think to continually try treatments makes you hopeful, but also sometimes I just need a break. Is what you are on helping at all, or is your pain scale not linear (in that you have a pain drop but it hasn't moved much in the numbers). I seem to have the later. I would always call my pain between a 4 and a 9, but between 5-7 seems to have a lot of variance. Also, some treatments can help you learn to live with the pain better...such as biofeedback, therapy, or a chronic pain group. Best wishes.

Some great suggestions above.

I agree that we can come up with a list of things to discuss with your doctors for you if you want. If your doctors aren't receptive I would start looking for a new one.

Also some great suggestions of things you can try that aren't med based. The other suggestion I would have would be to try a short holiday? A few days away somewhere quiet can sometimes make you feel a little better. It probably won't change your pain but it might give some spark back to help you feel like you can keep going. It doesn't have to be expensive, just anywhere you can go for some rest, relaxation and maybe some fun?

Out of all the alternative treatments, massage therapy seems to be the most effective for me (I've tried accupuncture, cranio-sacral and plain old physical therapy). My favorite part of the massage is when the therapist works on your feet.. and finds various trigger points through reflexology. If I have the massage done in the morning, it brings my pain levels down for most of the rest of the day. I know massages can be expensive. But, if you call around various massages and salon/spas to find out if they had any package deals, it can save you some money. Anyway, just a thought. Hope you get some relief!

Agreed massage has also been the most helpful for me, but only for my neck and general wellbeing/stress. I only get my back/neck/head worked on though. My insurance actually covers it. A lot of policies do now. It can just be tough to find someone who takes it...I went through my insurance's website and searched by location. I only pay my co-pay and have a limit per year (20 is common). A $30 massage is most amazing. If you do pay cash, the lowest I've seen is about $50. Shop around for both price and style (you don't want deep tissue...you want someone doing more of a restorative myofascial release sort of work). I do best going every 2 weeks...nice on the budge (and insurance limit) and I don't get too sore (which I do if I stay away any longer than that). Best wishes.

Awesome tip on the insurance! I never thought to check with my carrier. Great way to save money if some of it can be covered!

If they cover it, you'll probably just need a doctor's referral (doesn't have to specify the specific place...just your name, what its for, how many visits allowed, etc). They have to ask you a few basic questions each visit such as where your pain level is (to verify it helps) that they submit back to the insurance to get reimbursed. The massage places that take insurance are typically either stand alone or part of a physical therapy clinic (more medical based than spa, but the few I've been to were nice).

Thanks for the amazing tips guys, some things I have already tried, such as physical therapy, chiropractic, and accupuncture, and they have not worked for me, but that's not to say that other things like massage (which I had actually tried a few times in the beginning, but stopped because it hurt way too much, but maybe now, nearly 2 years later might be okay), changing my diet, and even the vacation idea, little things really, but things that I can do to be proactive, so I'm not just sitting around bemoaning the fact that I still am in pain. My neuro is an amazing guy, with the best bedside manner possible,and he happen to be one of the best headache spchialists in NYC, I don't want to pick up and leave to greener pastures, because who knows if I will even find any? So I guess I will stick around, and see what happens, and I will try these suggestions, I've got nothing to lose, and everything to gain. Thanks