New Daily Persistent Headache Support Group

I have had NDPH for almost 2 years now. Constant headache like most everyone else. I have given up on most of the meds because they don't help or the side effects are to severe. Recently I have a new symptom. I have had several bouts where the left side of my face/head go numb and are very painful to touch. It is even painful to touch my hair. Has anyone had this happen? My DR said my headache is just changing.

CMR, Welcome to the forum. My husband just had his 4th year anniversary from when his headache started. He has not had the nerve pains you are talking about. It sounds very uncomfortable though so I hope you are able to figure it out. Medication like Neurontin and Lyrica are supposed to help with nerve pains so perhaps you could try one of them? Or if it's a more superficial pain, try the Lidoderm patches too.

My DR wants me to try Abilify, has anyone tried that? I researched it and am not sure I want to try it. I have not done very well on the other meds I have tried. They either did not work or the side effects were to bad. I need to be able to show up to work every day, even if I am not able to function well. I am wondering if my neck could have something to do with my headaches, but my DR acts like it is not a possibility.

Yes, neck and head pain can be linked. Have you tried physical therapy, injections (such as occipital nerve or trigger point), muscle relaxers, chiro, massage, etc?

If you do not want to try any new meds, than I think you should discuss that with your doctor. Most any medication has risks of side effects, but, for most people, trying dozens of medications with the chance that something might releive even a little of their pain outweighs the side effects and many meds that don't work for them. I can definitely relate that sometimes I just need a break. I end up trying a couple new meds a month most times between my two main doctors, so some months I take a month off from any changes and it usually makes me feel "better", except that by the end of that month I'm ready to try something with any hope of reducing my pain!

I would talk about your concerns with your doctor and see if 1) it's time for you to take a break from trying new meds 2) you want to try Abilify or 3) you want to try another med besides Abilify.

I know some days at work are so tough for me with new med side effects. I try to start new things on the weekend or days off so at least I can stop taking it or have the worst of it over by the time I return to work.

If your doctor does not take your medical concerns seriously than please find a new doctor, specifically a headache specialist if at all possible. You can search on forums for a recommendation in your area, or on headache and migraine society pages.

For many people, including me, the head-neck connection is huge. What helped me the most is a nightly muscle relaxer, and I had a stint with massage therapy (thinking of going back when money isn't so tight). This is different for everyone though.

I would also be concerned if my doctor didn't at least do a neuro exam and/or run some test with the symptom you describe.

Best wishes.

CMR,

Welcome to the forum. As Kate noted above, there absolutely can be a connection between your neck and headaches. I feel that's part of the reason for my chronic headaches. I think doctors dismiss it if they can't resolve the headaches by treating the neck pain via physical therapy etc. but just b/c something doesn't resolve doesn't mean it's not part of the problem. Do you have neck pain/muscle spasm, etc?

Like you I'm not crazy about the meds due to the side effects and the lack of effectiveness. But, I do have some things that I can use on days where the pain is just intolerable and that is very helpful physically and mentally.

If your doctor isn't interested in pursuing causes of the headache (I've run in to some like that) than maybe it's time to find another one. I don't but the idea that the headache has no cause but some doctors are very satisfied with that explanation. The doctor should also listen to all your concerns about meds and be willing to discuss pros and cons with you. Ultimately it's your body and you know best.

Hi and welcome. I have not tried abilify, though I do take seroquel (also an atypical antipsychotic medication) for my headache. It has been the most effective for me in terms of pain control so far, though it certainly has its share of side effects. Seroquel's worst side effect for me was that it made me really sleepy especially at first. I got used to it over time, but if Abilify is anything like it you would want to start taking it on a Friday night so that you had as long as possible to get used to it before you had to go to work again.

I haven't had the facial numbness and pain like you describe, though it sounds a lot like descriptions I have heard of trigeminal neuralgia. Especially if lightly touching your face can set off the pain or numbness. Here is an article I found online about Trigeminal neuralgia, you can see if it sounds like what you are experiencing or not. It has a lot of links that I haven't explored, but I hope they are helpful. http://www.nlm.nih.gov/medlineplus/trigeminalneuralgia.html

Side note: Treating my neck pain helps my head pain too. It's hard to find anything that will help my head pain, so for me, treating my neck pain was the next best thing (muscle relaxers and massage).

My Dr does want me to try craneosacral therapy even though he didn't sound very positive about it. The problem is that they do not provide this locally. I need to go to another city for this and with my work schedule that is not a good option right now. Maybe in the fall. I have tried massage therapy and think it may help, but it is rather expensive and insurance does not cover it so I do not get to go often. I tried the chiropractor when the headaches first started and am thinking I will give that another try. Right now I am taking meds on my bad days and struggling through the rest. But at least I can get to and somewhat function at work most of the time this way. So many of the meds made me so tired or just unable to even think straight that I could not do my job. I think I have accepted (for now) that I will always have pain.

I think one of my biggest frustrations is that they do not seem to care what is causing the headaches. I do have pain in my neck and really wonder if that is the cause. I did have a consult at the Cleveland Clinic and she confirmed NDPH. However, my insurance will not approve my visits there. I would really like to see another Dr to try to find the cause, but my insurance does not cover any other neuros besides the group I go to. I am now seeing their headache specialist.

I was reading the information on trigeminal neuralgia and will ask about it at my next visit.

Thanks for your suggestions, it is nice to talk to people who understand.

CMR, It makes a difference what chiropractor you see. They are not one size fits all. Over the years we've been through dozens and finally found one that not only adjusts very gently but also does soft tissue work (ie. massage) to warm up the area before an adjustment. While I doubt it will fix your headache, it may bring some relief. It does to my husband.

Sorry you are so frustrated and hope your neuro can offer you some hope on the trigeminal neuralgia diagnosis.

Your headaches/migraines will change along the way. When I was first having my headaches change to migraines 4/01 the facial numbness and then pain becames part of my "aura" before all would come crumbling down. This would occur before I even knew my migraine was coming. Even though I was a right sided migrainer, it would be both sides of the face, cheeks, nose, lips, down into my teeth. I would also get a bright red right ear. My co-workers could tell I was getting a migraine before I knew.....weird. We were able to settle the numbness down when I would have epidurals in the nerves in the upper right/left of my head (at my devils horns), but that would only last a few months. It wasn't until I had sinus surgery (2/07) that the numbness went away and even since my nerve decompression surgery 9/08 it has only occured 1 other time......it was a few months ago after one of my botox sessions and the pain mgmt doc feels it is because he hit something he shouldn't have.