New Daily Persistent Headache Support Group

Hello everybody,

Wanted to drop a quick note here as an example of how a NDPH diagnosis has gotten better. I know that on support forums you often see posts from people who are having a hard time with a certain condition and don't get to see as many cases of people feeling better.

About 3 years ago I suddenly woke up to a relentless headache that never went away. Different doctors and neurologists tested me for mono, lyme disease and even seizure disorders. Eventually I found some headache doctors who described my condition as new daily persistent headache and began prescribing some medications based on that.

Unfortunately my headache did not improve much at all for a while. I tried to exercise regularly as a way to release endorphins and hopefully re-educate my brain into feeling better, but it seemed that any strenuous exertion just made my headaches worse. It was extremely frustrating when I felt the same after 2 years as I did when I first began having headaches. It was also stressful because in a lot of instances I didn't let on to people that I wasn't feeling well, and would try to balance my life out as if I felt fine.

Fortunately I did start feeling better after awhile. There wasn't a sudden instance where I felt better like the way my headache came on, but gradually I noticed that I was doing better. Exercising became easier, and my head pain wasn't as consistent or strong during the day. I started going out a lot more and became less worried about bringing medicine wherever I went, because even my worst headaches started to become manageable without taking anything. Eventually I began cutting down on the preventative meds I was taking and finally stopped them altogether. Today I still get a minor headache on occasion and if I exercise hard I'll reach a point where a headache comes on and I start to get dizzy, but by and large I feel good and act like I did before NDPH.

One thing that really bothered me when I was having a hard time with my headaches was that I couldn't find case studies or examples of people whose condition improved. Being fortunate in that I feel better now, I wanted to share my story as that type of example. I wish everyone the best in managing their headaches and getting better; hopefully someone finds a definitive treatment method in the future.

Thank you so much for sharing. It gives hope. I am very happy for you and hope you remain headpain free!

Wishing you the best!

Cj11--that is fabulous news! It is also a good boast to everyone on this forum to hear such good news. Could I ask you what medication(s) you found helpful?

Glad you are doing so well! all the best to you.

Hi Cj11, I'm glad you came here to share your story. Many people on here will enjoy hearing from you! I'm so pleased for you that you have gotten alot better. It's interesting that your headache has subsided after 3 years. Most people who get better seem to do it within a year or two of the onset of headache so it's great for some of us who have our headaches for longer to hear of a recovery after a few years of pain.

Can I ask what medications you were on and whether you thought they assisted or if you think it was you getting better on your own in time?

N.

Thanks so much for sharing your story. It is especially wonderful to hear of someone whose headache faded away after having it more than two years (some articles suggest there is a self limiting type of NDPH that goes away in less than two year, but doesn't leave much hope for those of us who have already passed the two year mark). That is really really encouraging.

I am curious about what meds you took, just in case they were part of the solution.

I always took Topamax with a second prescription, and kept changing the second one until I tried Bystolic (a beta blocker), and noticed that it seemed to help. I didn't experience a drastic change, like taking antibiotics for an infection, but just seemed to feel incrementally better with time.

I also avoided certain foods that have a reputation for causing headaches, although I've been eating more of them now (chocolate, onions, an occasional beer).

I guess I'm not sure whether the medicine was helping me or I just started improving on my own. I would say that trying to get some exercise, even when it was hard to do, was helpful as it helped me relax and have some sense of accomplishment.

Thank you so much for posting your experience. It gives some very much needed hope. Could you give us any more detail on your headache? Was it one sided or two? Did you have neck/muscle pain along with it? I'm so happy for you that you achieved such improvement!!

cj11, thanks for sharing that info. An anti-seizure med such as Topamax + a beta blocker or calcium channel blocker seems to be a favourite combo of many neurologists. I'm glad that it worked for you. Even if you did get better without the help of medication, and it just subsided on it's own that is good to know for those of us over the 2 year mark who think there is no hope!

I agree with you on the exercise, I try to do some every day, even when I don't feel like it. I think it helps me relax and feel better about myself.

I hope to see you around more.