So, an introduction. Sort of “in a nutshell”, but a lot of times I tend to keep typing and then realize it’s super long. Oops. Basically, I have been diagnosed with New Daily Persistent Headache (which I will refuse to type out… NDPH), which is a chronic daily headache. I will post the symptoms and info later.
January 2004:
My headache(s) started on a Sunday morning during my sophomore year of college, during winter break. I woke up, as normal, sat up, rubbed my eyes, started to get out of bed, and noticed that I had some pain on the right side of my head (specifically, near my eye). Later that week, since it didn’t go away with any over-the-counter meds or anything else, I went to the eye doctor. Check-up: OK. “Go to a neurologist,” he suggested. “Here’s the name of a childrens neurologist, I refer people to all the time, he’s great, and in town.”
Neurologist = BIG A-HOLE. Pardon my language, but he treated me like a child. I was 19 at the time, and he still treated me like I was 5 and was begging for a lollipop at the end of the appointment. My headache(s) were now mainly the whole right side of my head. [side-bar: the reason I say “headache(s) is because I have a constant headache, but the pain level goes up and down all day, making it seem like it is broken up into multiple headaches). We had to practically BEG for a CT-scan. His explanation of a CT-Scan = “We have little tiny cats and we inject them into you and they have little tiny cameras and they take little tiny pictures and send them back out to me.” He also tried to tell me that I had ADD, and that it was all in my head. Mmhmm. Clearly, we said “adios,” and went to a new neurologist who treated me like a REAL LIFE ADULT and took me seriously.
Then came the dentist (”You have TMJ, that’s what is causing the headaches”), the TMJ/myofacial pain specialist (”Yes, you have TMJ… No, you don’t have TMJ, you have an Indomethacin-responsive headache… No, you don’t…Hmm), the acupuncturist, the chiropractor, the massage therapist, my regular doctor, the gyno, the eye doctor AGAIN… INSANITY.
I am now working with my 2nd headache doctor. The reason why it’s my 2nd is because we (we = my mother and I… my mom has been instrumental in this whole “Operation: Stop Headache” business) felt that while the doc had found meds that were helping to kinda keep me stable, I wasn’t getting any better, and he wasn’t moving me along at all. My new docs have done a lot in less than a year, and hopefully will keep doing so.
Okay. So, that’s the “nutshell.” Sort of. It’s dinnertime. Dinner = leftover pizza from Unos!
June 2, 2007 at 9:23 pm
Just a note to let you know that you are not alone. i know you know that but your blog could have been easily written by my daughter who has suffered from NDPH for the past 4 and a half years. So we know what you’re going through and know how frustrating it is. She’s 19 now and has tried over 30 medications. A few helped for a short time. Most did not and some like topamax she nicknamed dopamax. Right now she’s not taking anything. I appreciate that you are doing this blog because it helps others who suffer and their families to know that they are not alone. My daughter has a hard time talking about it and your thoughts pretty much echo hers and how she feels about it. I also follow the NDPH group at mdjunction.com and hope to read about things that may help. Are you taking anything now that seems to be helping? Thanks again for sharing. It’s so hard to explain to some people about NDPH. They just can’t imagine that people can suffer with headaches everyday and not find relief. Your blog will hopefully help them understand and helps those who have it. So many thanks and take care.
June 3, 2007 at 9:20 am
Hello Friend,
Good luck with this new blog.
I’m sure you’ll do great, as you’ve done with our support group.
cheers,
roy
June 4, 2007 at 9:52 pm
Thanks, Judy, for your support. I am so sorry to hear about your daughter. I’m on Topamax now, and it certainly might as well be called Dopamax. I have a hard time talking about it in the respect that my words feel like they are missing from my mind and I can’t get them organized all the time, and also because my feelings are so up and down about the whole situation. Our NDPH group has been such a big help — I didn’t realize that it would grow so much in such a short time, I am so glad that I suggested it to Roy and the others at mdjunction.com. I put up my current meds under the “about me” section, and am just starting to lower my Topamax to see if I can manage on a lower dose.
I hope that I am able to help others – I really can relate to your daughter, especially since my headaches came when I was 19. Keep in touch, please!
June 4, 2007 at 9:55 pm
Roy, thank you so much for the good wishes
i’m looking forward to this experience, whatever it may bring.
June 6, 2007 at 10:02 pm
Joanna, you’re doing a great job explaining NDPH and the information you’re sharing is very helpful as is the information at mdjunction.com. I look forward to reading about your experiences finding relief as they sound so familiar in what my daughter has also been through. And everyone seems to have different experiences with the medications they try. My daughter has tried both topamax and cymbalta but not together. Have you found that combination to help lessen your headaches? You also mentioned Provigil. Does that help with the tiredness? Sure hope so. My daughter has tried so many ( over 30) and most did not help but we keep researching and looking to see what has helped others so please continue to share. I hope cutting back on the topamax helps.