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I'm 36 now, my first onset was when I was 17 and ever since then I've had headaches everyday, every minute, some days worse where I pray to go to sleep and end it peacefully. As I was driving home, that fateful day, I was at the corner turning left, I started feeling nauseous and vomited right then and there. I made it home, went in the house and told my mom. I couldn't be in an upright position or I kept vomiting. We went to Kaiser. They started what I thought was an endless amount of tests and exams, terrible. To calm down the nausea and vomiting, they prescribed steroids. It helped. But I still had the headaches. They did MRIs, CTs, Angiograms, lumbar punctures...nothing. The only thing that came about was that my sedimentation rate was very high. They said it indicated an inflammation/infection somewhere but it doesn't pinpoint anywhere. They began diagnosing me as having lupus, which luckily a specialist ruled that out. No medications have helped. I hate taking meds. The good news about all those tests were that I don't have tumors, aneurysm, or anything potentially hiding. I've gone to many optometrists who says there is nothing wrong with my eyes. Then why do I feel so much pressure above my eyes? When I close my eyes and I look up, that so intensifies the pain. The "halo" around my head stays the same too.
My mom, periodically, asks if my h/a subsided, I told her no. I feel it now. She says I don't look or act like it. 🙂 I do have a high tolerance to pain, it's there but there's nothing I can do about it so why moan and groan? After 19yrs, I just went to a neurologists that I have gone in the past. He reviewed my MRI. He said nothing has changed. That's when he told me that "they" have came up with this new term "new daily persistent headache". I was hoping he would have said, there's a med that can ease the pain. NOPE.
It is true what people say. I wish I had migraines. At least then, I can have the pain subside and there's treatment for that. I have noticed that with stress and lack of sleep, my headache intensifies. Well, maybe with more research, they will be able to come up with something. Fibromyalgia was at first unknown and not understood, they have diagnosed it and now have meds for it. There could be hope.
I will continue to pray for me and you all.
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I joined this entire mayo network to reply to you. I read that you started having these daily NDPH since you were a teen and are already 36. I am so sorry. I started having them 8 years ago when i was 40 and my mom died and I watched her die and held her hand and it was just a horrific death. She basically drowned - she aspirated and she just kept spewing all this stuff up and out her nose and i stayed olding her hand and she kept looking at me like " do something" and her stupid hospice medication had not been delivered to our home yet. she had just made the decision to go hospice and she aspirated almost immediately so it took time for them to run the morphine over. Finally, we had the morphine and the nurse was able to get her into a coma and my last words to her was that she would wake up in heaven and she would not wake up in this horrible state again. I promised her and told her i loved her. She started to wake again and the nurse gave her some more medicine and i begged her to give her enough to keep her in a coma and luckily she gave her more and she did. She died a couple hours later so she never had to wake to that again. And my other promise was to watch out for my father which i am doing now still since he is 85 and has dementia. But during that ordeal, I had to change clothes 3 times. I was that close and she had that much of stuff coming out. And after the funeral and a few weeks i noticed the headaches start. And they got worse and since then they have never stopped. I likeyou have been everywhere. Except Mayo. They refused to see me. Said I had enough places in St Louis to see me. HUH? So I have been to 5 other headache centers where i stayed 11 days to 3 weeks and had a neurostimulater put in and nerve decompression on the forehead and ocipital in the back of neck and just had a TMJ surgery and he said No, that's not it. So many ablations, nerve blocks, all kinds of IV treatments , even IV histamine to see if they could get me use to histamine since Benadryl IV is the only thing that helps me for a little while when i am in the ER. ONly for an hour though. Nothing works so i finally stopped my job 18 months ago and now I am 48 and lost a great job that paid great i went to a great university with a business degree and always was successsful. I did have a great disability package and still do get paid well with that but not like i use to get paid and my kids are now gone to college and they saw me go from a wonderful mom to mentor to a slug of a mother to never want to be like. DO you ever feel that way? Did you ever have children with all the pain? I can't imagine having a baby with all this pain. I wouldn't be able to. I wanted to adopt a daughter so bad. We have 2 boys but i know i cant even do more than 1 thing a day i can't handle a baby. And I went into menopause the same time my mom died and when these headaches started. Don't worry we checked my hormones a million times and I sought out every specialist in hormone replacement therapy first and trust me, it didn't help. it made it worse. so now I am on nothing. i just saw your story and realized you are the first person I have read about that has had it longer that me and i wonder how do you get past the feeling that we won't find a cure? Do you still allow yourself to hope? To keep looking? I keep looking and trying and allow myself to cautiously be otpimistic but now, after this last one I am not sure I can continue to hope. this last one really shot me down. And I have tried taking too many meds before and I don't want to do that again so I wonder how you get through it. Do you try to just live with it and not pretend it may get better or do you still think it will? I don't know what the healthiest way to handle it is? I went to counseling for almost a year. And I found i am better when i don't go. I tend to just talk and go over and over and over the same things and it makes me just re hash how bad things are. I am better without that. How about you? What do you do to just try to stay positive and not get so upset treatmetns fail? I want you to know what an inspiration you are to me. I understand what it is like to lie in your bed and be so uncomfortable that you can't lay down or stand up. It is like you can't do anything to get relief. So i want you to know i understand and I just am so proud of you for doing it for so long and if you have anything you can teach me i will listen. You are my inspiration and as I said I only joined this because I read your story. yOu are a wonderful person and i hope nothing but good things for you.