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Posts: 2
Joined: Apr 13, 2013

New Daily Persistent Headache

Posted by @mmccoy1, Apr 13, 2013

My 13 year old daughter was just diagnosed with New Daily Persistent Headache after two months of unrelenting migraine symptoms. She had never had a migraine before, so it went undiagnosed as a migraine until about a month into it. After having a CT scan to rule out sinus problems, and opthamologist, numerous other tests and medications, we saw a neurologist. They tried iv injections of steroid, which did not help at all. None of these pain meds helped to relieve the throbbing pain behind her eyes and in her temples and forehead, nothing helped. We then found a headache clinic in Chicago where she stayed over two weeks for numerous injections of many medications, where she got her pain level from the constant 10 it had been, down to an 8 for a few days, but then it came back up and is still there.

I want to know if others that have this headache have found relief? Are there people out there that have had pain free days? i want to know if it will ever go away. I have read some very discouraging things from many who suffer with this type of headache, and my heart breaks on a daily basis. I am desperate to find help for her.
i called Mayo and was told that they do not hospitalize for chronic migraine.
We are currently under a Dr’s care who does specialize in this, we need to try these new meds and give it time. She might need another hospitalization…I don’t know. I just want to read something that is hopeful, rather than so discouraging. Is that out there?
She is 13, beautiful, intelligent, athletic….her life has been turned upside down. She has missed more than 2 months of school, with no thought of being able to return anytime soon, she missed her own 13th bday party, her friends parties, spring break…I will search the ends of the earth until I find something that will relieve her pain. Please share with me your story, especially if you can encourage or enlighten me. This is still new to us, and I am not coping very well. I wish it was all a nightmare. There couldn’t be a more wonderful, bright, kind caring child for this to happen to. I need to give her hope that she can live a normal life again.


E's dad

Posts: 6
Joined: Oct 11, 2011
Posted by @esdad, May 21, 2013

Sorry to hear about your daughter’s suffering. Unfortunately we too are searching for relief for out daughter. She is now 15 and has had daily persistent headache for over 2 years now. We started at the headache clinic in Chicago as well. After numerous meds. she found little relief. We took her to Mayo in Feb. of 2010 and she took part in the pain rehab center where she learned techniques to deal with the pain. That helped for a while but she relapsed several months later. We then took her to the RIC in Chicago with little relief. She has had Botox injections which made things worse. She has had acupunture which actually has given her more relief than anything so far. She has missed countless days of school and is currently being home tutored. We have an appointment June 3rd at Mayo. We hope we can get some relief for her. We too are very desperate to get some help for our daughter. Sorry We can’t offer any posiitve advice but we refuse to give up.
Stay positive!

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