Thank you I’m really struggling I’ve ha d headaches since October 2023 it’s driving me insane I was sent to hospital to see a neurologist they did a mri . On the scan it had white spots my first neurologist said it’s consistent with demyelination as I’ve had numbness vertigo and blindness in eye as well . The second neurologist whom I saw yesterday said the white spots are because I smoke now she thinks I’ve had a TIA as I have difficulty with words sometimes I have now been put on blood thinners she said the headache might be because I’ve had migraines before. I’m so confused where both neurologists say something different. I’m now being sent for spine mri neck ct scan and mri on leg because of numbness. So confused I just want to feel well .
When I was in the 6th grade (so 2012) I don’t remember where I was, but I remember where I was when it went away in 2014 and where I was when it came back eight months later. I was born with Hydrocephalus so we all just assumed it had to do with that. Well after having it for two years I had surgery to revise my shunt and I woke up pain-free for the first time in two years and I’ll never forget it. That being said I know EXACTLY where I was when it came back eight months later. I was sitting at lunch and I thought “Something doesn’t feel right.” (I honestly don’t even think I realized it was a headache, I just felt off) but by the time I got to the nurse and called my grandma and she answered the phone I knew what it was and I said “I have a headache and it’s not going to go away.” I had spent eight months being able to take a Tylenol and be pain-free almost immediately and once I realized what was going on it was very obvious to me.
My NDPH's began in 1983 with a severe case of mononucleosis. It will be 40 years next Spring. Can't even remember what it's like to not have a headache. :(
I have definitely a New daily persistent headache it's a chronic type headache it's almost 5 years that i have suffering with this headache.I am so so much depressed right now because the pain won't go away for a little bit in a day it's continuously there i don't what I have to do i have visit serveral doctors but nobody able to resolve my problem. My life is ruining because of this headache that i can't rid of because the Google says that i no chance to be cured what can I do 😭😭😭
After watching this I firmly believe I’ve been misdiagnosed. I’ve had a history of migraines including periods of headaches lasting weeks and now have daily headache. Diagnosed as having NDPH. and my headache has always been locked to one side though some meds it switches it to other side but usually always on right side
My Refractory NDPH began after AZ injection May 2021. My hypothesis is that I have a build up of cs fluid as an inflammation response or autoimmune response. I can feel and hear this in my brain and tip of my spinal cord. I'm using turmeric, ginger and anything that reduces inflammation without detoxing. Then I use dandelion root to take the fluid down. As medications don't work for me I have learned by trial and error that these vits etc make a difference. Hope this helps others
Thank you for your input. My son developed NDPH after 2 shot of Pfizer in May 2021. He has been tried all kinds of medicines and nothing helped. I wonder what is your pain level right now after trying these vits?
@@qianwei9474 I found bio resonance and it is marvellous. I also boughtt the trinity device so I can treat myself. If you contact joanne at biomedis waterford she'll tell you more. I run support groups and another person with ndph just tried it and she's over the moon too. it worked for her straight away
@@carefreelivingg16 just coming out of a 7 week flare. NDPH is just one symptom of my autoimmune reaction to one astra zenica injection on 18th May 2021, 20 months ago. I've so many other symptoms that accompany the pain. Pain is much less than it was, I've gotten quite good at managing it with tylex and bioresonance, and zomig for when it hits a 9 or a 10 out of 10. Zomig doesn't work on lower pain levels for me. It's an insane balancing act and sometimes, like with this last flare since 2nd Dec, I'm just functioning at half or even a quarter of what used to be my norm. My brain 'cleared' three days ago and its wonderful to be able to do things like a normal person, even though I'm still having to take very strong pain relief, at least I'm functioning. Hope that makes sense, answers your question and you're doing OK. The latest things I have taken are aloe Vera liquid (in tiny quanties) turmeric, mefenemic acid (ponstan) half a piriton at night, lions mane mushroom supplement and a glass of red wine in the evening for the cells. It's hard to know what helps of course. Still using bioresonance and I got a thymus programme added a week ago so that might be helping too. Feel free to contact me if you want to know more. The list of things that I've tried that didn't work is ridiculously long, couldn't begin to write them all here
I've been suffering with NDPH since Jan 4th at 2:30pm. I've been passed along from doctor to doctor. I've had a lot of the treatments I'm seeing in the literature. What I need is a headache specialist who doesn't want to throw up their hands and invite me to go elsewhere. I need a specialist who is going to stay with me for the long haul. No one on the medical side has suggested these but I have gotten some pain relief from medical cannabis, therapeutic yoga and cognitive behavioral therapy. I've just had to figure out what to do both within and outside the mainstream medical system. Although the psychological approaches (the non-flaky ones) for chronic pain are a perfectly well established, evidence based treatment. But on the medical side, I probably need a referral. I have been moved along to a different hospital's neurology department but getting access to the headache specialist rather than his 3rd year resident is damn near impossible.
I got the top person in the country but he told me he couldn't help me, said something switches on in the brain, they don't know why, and they can't find a way of switching it off. Another top neurologist who has a year wait to see her privately! told me similar. They've acknowledged its vaccine injury but won't document it on my medical notes. I'm 20 months on and have no upcoming appointments, they've given up on me. I'm watching other people in vax injury support groups getting horrendous treatments like injections into their brains and to no avail so I've stopped trying to go that route
@@EithneBranigan oh. Todd Rozen is who I thought was considered the top doc on NDPH. When you said you got the top person in the country I was wondering if it was him. Who is it, may I ask?
I have continues headache for 1.5 years i have done mri and it is also ok. But the headache didn't gone i have no previous history of headache. My condition started when i got a hit in my eye with a tennis ball. My headache have no pain but like a tight band around my whole head and around the neck. Anyone please help me out. My life has changed i am not able to concentrate to be happy anymore.
Thank you I’m really struggling I’ve ha d headaches since October 2023 it’s driving me insane I was sent to hospital to see a neurologist they did a mri . On the scan it had white spots my first neurologist said it’s consistent with demyelination as I’ve had numbness vertigo and blindness in eye as well . The second neurologist whom I saw yesterday said the white spots are because I smoke now she thinks I’ve had a TIA as I have difficulty with words sometimes I have now been put on blood thinners she said the headache might be because I’ve had migraines before. I’m so confused where both neurologists say something different. I’m now being sent for spine mri neck ct scan and mri on leg because of numbness. So confused I just want to feel well .
what an awesome talk. Thank you.
Thank you, it's very difficult to find new information regarding NDPH. Your input instills hope.
yes，I also find it hard to find information about this kind of headache
50 years ongoing.Tried the lot. Got worse after covid vaccines.
When I was in the 6th grade (so 2012) I don’t remember where I was, but I remember where I was when it went away in 2014 and where I was when it came back eight months later. I was born with Hydrocephalus so we all just assumed it had to do with that. Well after having it for two years I had surgery to revise my shunt and I woke up pain-free for the first time in two years and I’ll never forget it. That being said I know EXACTLY where I was when it came back eight months later. I was sitting at lunch and I thought “Something doesn’t feel right.” (I honestly don’t even think I realized it was a headache, I just felt off) but by the time I got to the nurse and called my grandma and she answered the phone I knew what it was and I said “I have a headache and it’s not going to go away.” I had spent eight months being able to take a Tylenol and be pain-free almost immediately and once I realized what was going on it was very obvious to me.
My NDPH's began in 1983 with a severe case of mononucleosis. It will be 40 years next Spring. Can't even remember what it's like to not have a headache. :(
Mine started 21 years ago because mononucleosis too.
@@marcosferreirosopena887 That's interesting. I also had mono, but mine did not start until years later. I have had it for 23 years.
I have definitely a New daily persistent headache it's a chronic type headache it's almost 5 years that i have suffering with this headache.I am so so much depressed right now because the pain won't go away for a little bit in a day it's continuously there i don't what I have to do i have visit serveral doctors but nobody able to resolve my problem. My life is ruining because of this headache that i can't rid of because the Google says that i no chance to be cured what can I do 😭😭😭
I feel for you.
After watching this I firmly believe I’ve been misdiagnosed. I’ve had a history of migraines including periods of headaches lasting weeks and now have daily headache. Diagnosed as having NDPH. and my headache has always been locked to one side though some meds it switches it to other side but usually always on right side
My Refractory NDPH began after AZ injection May 2021. My hypothesis is that I have a build up of cs fluid as an inflammation response or autoimmune response. I can feel and hear this in my brain and tip of my spinal cord. I'm using turmeric, ginger and anything that reduces inflammation without detoxing. Then I use dandelion root to take the fluid down. As medications don't work for me I have learned by trial and error that these vits etc make a difference. Hope this helps others
Thank you for your input. My son developed NDPH after 2 shot of Pfizer in May 2021. He has been tried all kinds of medicines and nothing helped. I wonder what is your pain level right now after trying these vits?
@@qianwei9474 I found bio resonance and it is marvellous. I also boughtt the trinity device so I can treat myself. If you contact joanne at biomedis waterford she'll tell you more. I run support groups and another person with ndph just tried it and she's over the moon too. it worked for her straight away
I have a similar theory on mine. Mine feels like some viral infection continues to attack tissue around my brain, or a CSF fluid pressure issue
@@EithneBraniganany updates with your NDPH?
@@carefreelivingg16 just coming out of a 7 week flare. NDPH is just one symptom of my autoimmune reaction to one astra zenica injection on 18th May 2021, 20 months ago. I've so many other symptoms that accompany the pain. Pain is much less than it was, I've gotten quite good at managing it with tylex and bioresonance, and zomig for when it hits a 9 or a 10 out of 10. Zomig doesn't work on lower pain levels for me. It's an insane balancing act and sometimes, like with this last flare since 2nd Dec, I'm just functioning at half or even a quarter of what used to be my norm. My brain 'cleared' three days ago and its wonderful to be able to do things like a normal person, even though I'm still having to take very strong pain relief, at least I'm functioning. Hope that makes sense, answers your question and you're doing OK. The latest things I have taken are aloe Vera liquid (in tiny quanties) turmeric, mefenemic acid (ponstan) half a piriton at night, lions mane mushroom supplement and a glass of red wine in the evening for the cells. It's hard to know what helps of course. Still using bioresonance and I got a thymus programme added a week ago so that might be helping too. Feel free to contact me if you want to know more. The list of things that I've tried that didn't work is ridiculously long, couldn't begin to write them all here
I started have daily chronic headaches soon after having shingles
I've been suffering with NDPH since Jan 4th at 2:30pm. I've been passed along from doctor to doctor. I've had a lot of the treatments I'm seeing in the literature. What I need is a headache specialist who doesn't want to throw up their hands and invite me to go elsewhere. I need a specialist who is going to stay with me for the long haul. No one on the medical side has suggested these but I have gotten some pain relief from medical cannabis, therapeutic yoga and cognitive behavioral therapy. I've just had to figure out what to do both within and outside the mainstream medical system. Although the psychological approaches (the non-flaky ones) for chronic pain are a perfectly well established, evidence based treatment. But on the medical side, I probably need a referral. I have been moved along to a different hospital's neurology department but getting access to the headache specialist rather than his 3rd year resident is damn near impossible.
I got the top person in the country but he told me he couldn't help me, said something switches on in the brain, they don't know why, and they can't find a way of switching it off. Another top neurologist who has a year wait to see her privately! told me similar. They've acknowledged its vaccine injury but won't document it on my medical notes. I'm 20 months on and have no upcoming appointments, they've given up on me. I'm watching other people in vax injury support groups getting horrendous treatments like injections into their brains and to no avail so I've stopped trying to go that route
@@EithneBranigan Rozen?
@@michaelchecknoff4047 rozen? Not sure what you mean sorry
@@EithneBranigan oh. Todd Rozen is who I thought was considered the top doc on NDPH. When you said you got the top person in the country I was wondering if it was him. Who is it, may I ask?
@@michaelchecknoff4047 I'm in Ireland, maybe you're somewhere else. My consultant is Martin Ruttledge
I have continues headache for 1.5 years i have done mri and it is also ok. But the headache didn't gone i have no previous history of headache. My condition started when i got a hit in my eye with a tennis ball. My headache have no pain but like a tight band around my whole head and around the neck. Anyone please help me out. My life has changed i am not able to concentrate to be happy anymore.
Ekhon thik hoieche Amaro ei rokom hocche onekdin dhore
How are you
No pain?? Then it's not NDPH.
What is your age
Goin through same pain
Anyone find a medication that works for NDPH?
Migrane is horrible
Mask on camera = Discredited immediately