I'm new to this forum, I've never participated in a support group. Just need a little help...
I was diagnosed with NDPH in August at the Mayo clinic. I have had the constant headache since November 2008. I have been on all kinds of medication, Topamax for the longest. I have stopped taking it all since nothing helped. Some days are better than others, but this has been a particularly bad week. I have a really supportive family, but I think I would like to talk with someone who has the same problem..
I'm 21, and normally I can push through and do everything I want despite the headache. I'm a really positive person. I have learned not to complain about it anymore, I don't tell new people I meet about my problems.
But sometimes I am scared this will be here the rest of my life. I just need reassurance I guess.
Hi and welcome. I am sorry to hear that you have NDPH and that you have not been able to find any meds that help, but I am really glad that you are still able to function pretty normally (at least as far as most of the world can see, you know how much extra effort it is costing).
In some ways it is great to be able to go through life without everyone knowing, but in other ways it makes it harder when you do hit a particularly tough patch since so few people around you really know what you are dealing with. My life is kind of the opposite, my headache is pretty disabling and everybody knows about it, even fairly casual acquaintances since I wear a hat and sunglasses all the time, even indoors (it looks weird). I have a lot of support from family too though, so in that we are a lot alike. Oh, and when it is bad, I complain to my family and they let me. Probably not the best thing to do, but it HURTS!
I don't know if you will have it the rest of your life or not, but it probably won't be just like it is now for the rest of your life. You haven't even had your diagnosis for a year yet, and while you have tried lots of meds, they are finding new ones all the time, and there are also other treatments (nerve blocks, botox, trigger point injections, ect) that might be things you could try. It can get better, and for a few people it even ends up getting to zero pain levels.
Feel free to ask any questions you have and explore the site. There are LOTS of us here who are dealing with the same thing.
Hi and welcome! You will find lots of friendly people here and it's a good place to talk about things and get some support.
If you look through some of the older posts you can get an idea of what types of meds other people are on. Even though you've probably tried heaps already, there are lots and lots out there to try and many of us have eventually found the right combo that works for us!
Most people in my life now know about my problem but there are still lots of casual acquaintaces that don't. Some members on here choose not to share their condition with many people. Others prefer people know. There isn't any right or wrong, just what you are happy with.
It is very hard to come to terms with the fact that you may have this forever! Try not to think about that too much as there is still a chance it will go away or at least significantly improve. The best thing to do is focus on each day and not look to far into the future. Just remember that you are already coping with your pain and have been for awhile, so you are doing a great job!
Anyway, look around and ask any questions you have.
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