BRAIN GYM:

I almost didn't even go to this most recent program put on by my school system on Thursday because my headache pain was so bothersome, but I had a feeling that it would be helpful to me both personally and for working with students.

There is a successful program called Brain Gym www.braingym.com that is used to assist a variety of people (learning disabled, memory problems, difficulty focusing, elderly). "Educator and reading specialist Paul E. Dennison, Ph.D., built on this knowledge by bringing specific movements into his learning disabilities clinics... Stress inhibits [connections between laterality, focus, and centering in the brain], while the Brain Gym movements stimulate a flow of information along these networks, restoring the innate ability to learn and function with curiosity and joy."

Along with the 25 or so activities that make up the Brain Gym (those activities are taught in the course for people who are interested in being trained as Brain Gym instructors), there are 4 simple activities that use the acronym P.A.C.E. - all together, taking no more than 4 minutes. These are shown on http://www.ysu.edu/rdg-studyskills/PACE/ introduction_to_pace.htm and I believe that they may be able to even help us out a bit - especially since it's hard for us to work at times, to focus on the work, conversations, socializing, etc. The PACE activities help to align the 2 hemispheres of the brain (specifically the "cross crawl" activity) so that they are working together.

Just thought some people might be interested in this info

You can read about it and try yourself at www.transparentcorp.com.

Personally I haven't found the headache sessions very effective (I believe they work better on less chronic headaches), but as relaxation, brainwave entrainment is really effective. It works differently from person to person, but I've heard stories from some who've gotten rid of their headaches by combining different sessions.

If you just wanna try it, go to the above mentioned homepage and download the trial of Neuro-Programmer.

Joanna, that brain gym sounds interesting. I'll make sure to give it a try!

I went to my neurologist yesterday and asked about the “hole in the heart” theory. She basically shot my theory down. Apparently, 1 in 5 adults have a hole in the heart….so it’s no surprise that in the research done on migraine that there is a relationship between those with migraine and those with a hole in the heart. I asked her if those who had migraine had a statistically significant higher percentage of “hole in the heart” and she wasn’t sure. She mentioned that some research had shown that after the hole was patched up and migraines were cured in patients that the migraines often would come back again. She said that if a problem in the heart was causing a headache, we should usually see something irregular in an MRI, like a clot.

Magnus, I tried acupuncture last year. I did ten sessions and my acupuncturist really put in a lot of needles (15-20 in my head) and turned the electricity up on the machine. $500 and 5 weeks later, I still felt the same. When I first saw the acupuncturist, he said he could cure me and that he’s cured lots of people with headaches. It didn’t work for me....but I think there are different types of acupuncture – maybe it’ll work. I’ve also tried massage therapy (aligning the back) and physical therapy (to strengthen my neck)….no luck there. I’ve also tried botox – no luck. You had mentioned exercise – I think it’d be interesting to see if there’s a relationship between strenuous exercise and curing the headache. Maybe exercising (a lot) could un-trigger the brain.

Andrew, I take 37.5 mg of effexor. I got up to 150 mg. but it didn’t seem to help any more than the 37.5. I would say that effexor helps me about 30%. My neurologist doesn’t know anything about the recovery rate. When I first went to her, I had to explain to her what I had and I gave her a couple of articles about NDPH.

If anyone knows a web-designer with free time and willing to do some service, I think it would be cool to put together a page with everything we can think of to try, and a place where we can rate it on a scale of 1 to 10. Also, you could note any side effects to the meds/treatment. There would also be a place for what tests we’ve tried and whether the results were normal or not (MRI, blood tests, etc.). That way we could get a better idea of what to try first.

There are a couple of things that help me feel a bit better. First, I make sure I get adequate sleep (8 to 8.5 hours for me). Taking a nap can also help. After 8 hours of work, I come home and am physically exhausted from working and trying to concentrate all day with a headache. I find that if I take a nap, I feel quite a bit better than before. Another thing that helps is to make sure I’m eating meals/snacks frequently. If I skip a meal, I definitely feel worse.

...I make sure I get adequate sleep...Taking a nap can also help.... Another thing that helps is to make sure I’m eating meals/snacks frequently. If I skip a meal, I definitely feel worse.

Ryan, it seems like we've both tried the same exact things with no luck - I even did 3 rounds of Botox... talk about PAIN. I certainly know what you mean about having enough sleep. Even having a good amount of sleep PLUS a nap doesn't even help some days! It's hard for my boyfriend (who lives with me) to understand why I can't get it together enough to get dinner ready without his help if he's got a busy evening, but some days/nights just don't seem to allow me to "get it together".

Also, in response to your suggestion about a webpage about all the things we've done/tried/suggestions/ etc, the moderators of MDjunction are in the process of creating some new Support Groups (like the Breast Cancer and Bipolar ones) and I put in a request for a NDPH/Headache one. I believe it should be ready for us soon, so we could certainly use part of it to organize all those types of things. That's a great idea.

First off I was actually thinking of the web-page thing as soon as I found this site. I registered www.newdailypersistentheadache.com and am beginning to work on it. I just have to get the proper disclaimers and all that set up before I open the thing but I will definitely keep you guys posted. I think this forum is great for talking and for people to meet on and discuss things and it should definitly be kept up. However, I also want to make up a page that like Ryan said that has a pain scale, medicine review, treatment options, treatment reviews, discussion board, places where we can post articles etc... but like I said I need to get the pages set up and have a lawyer make up all the disclaimers before I can make it an active link. I have quite a bit of graphic design experience I edit and paginate a huge catalog every other year, and have always wanted to make up a web page for NDPH but never new if there was a call for it. So now that I know people are interested I think it would be great.

I actually owned www.newdailypersistentheadache.com about 3 years ago. My wife has had NDPH since May of 2003. I set it up to try & get people talking. I had no experience at all in setting up a website or running it. I set it up with Microsoft Frontpage2000 & used Godaddy to host it. I had alot of hits but didn't know how to keep a forum going, it was a very basic site. I let the name expire since I was not able to do anything with it. It seems more people are discussing this now. I may have a backup of what I had if your interested, though my computer just crashed so I may have lost it. Good Luck with your site I look forward to seeing it.

Talk to you soon.

Bill

I think having our own website would definitely help gather more of us together. I’m guessing that there are probably thousands like us, but because of the lack of knowledge among the medical community (I had to diagnose myself) many people are not getting diagnosed properly. Having a website would inevitably allow more people to figure out what they have and help them know that they’re not alone. Also, having hundreds of us trying different treatments would increase our chances of finding the best solutions.

That would be great any info that you have. Glad you joined the site!

Everyone,

I'm giving myself a goal to get it up and running by middle of June hopefully. I'm unfortunately going through a turn for the worse in my headaches right now. I also have a transformed migraine which sounds like a regular migraine but is a different kind of one, that threads into my NDPH so when that flares up I can have a very nasty medicine resistant migraine that goes along with the NDPH. So when that subsides a little I can start to work on the site aggessively.

Ryan,

We definetly think along the same lines. From everything I've read there is about 4 or 5 % of headache sufferers that have this condition. It doesn't sound like alot but there are quite a few headache sufferers so I think if there is a way of getting this out there I think we might have a lot of feedback and I have nothing to lose but time if it doesn't produce anything like Bill's.

I hope everyone has a good week! Joanna I hope you are getting lots of rest and enjoying your vacation

That website to organize things that people have tried and what they've been rated sounds like a great idea. Once the headache/NDPH support group is set up and ready to go on this site, we can link to it on that. Obviously, all those types of things will probably be discussed there, but having them all organized somewhere would be great. I don't really know very much about migraines other than the fact that a lot of our NDPH pain is similar to the migraine pain, but I am crossing my fingers that your transformed migraine does't stick around for too long!!