Thank you Paul for sharing your story. I am on a couple of fb groups with you and always enjoy your posts. Even feeling “shitty” has helped me. God bless
Thank you for your video. There's not much info on this and few understand what it s really like. . Have had it for 5 years. I have much empathy and respect for anyone going through this. What meds have you tried?
There a a couple of NDPH groups in Facebook. Nobody has found a miracle cure. You what you can do within your limitations. I hope your daughter's pain is minimal, and even goes away! Been known to happen.
@@paullima9713 yes, I’m on those FB groups already. The neurologist said to cut out all artificial sugar from diet for at least 3-4 weeks and the headaches should significantly reduce or even disappear. However, I can’t get my daughter to try this. ☹️ Have you tried this? If not, could you try it and let us know?
@@liviasmith8945 If it is a NDPH, I suspect cutting out sugar won't help. BUT... you never know what will, so she should try it! I don't put sugar in anything. Get a bit of it in bread, I suppose... I've been on 5 meds, and they haven't helped. Hope your daughter gets some relief somehow...
Paul I have this as well (3 years now) although in terms of pain mine is more like 2-3 however its the fatigue that messes me up and impacts every aspect of my life. Am curious have you tried steroids? There are studies showing this has worked for some people with NDPH, especially those that have it due to post viral infections
I have not tried steroids. Tried 5 other meds. No help. Belong to NDPH group on facebook. Some folks have tried steroids: little to no relief, or some relief and then relapse...
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 😭😭😭
Sadly, there is little you can do beyond persist. Fight by trying to do want you love to do. Try to get engaged in something. Doesn't make the headache go away. But might help you forget you have it for a while. And don't be afraid to just sit in the dark with a cold cloth on you head and do nothing, when nothing is all you can do. If you are on facebook, join the NDPH Support Group. Sometimes it helps a bit to chat with others who are dealing with what you are dealing with.
have multiple sclerosis as well. Not related to my headaches. Have had a number of MRIs for MS. Have not shown anything headache related. NDPH is a strange fish!
@@paullima9713 I have had 2 MRIs in the past for my daily headaches. Both have shown some lesions which “ could be sequels of migraine headache or ms”. I just have a daily 24/7 headache. I noticed it come on after my first phizer vaccine for Covid. I’ve seen 3 neurologist all which say it’s not ms since my only system is a headache. However, none have been able to help me get rid of this constant headache. I don’t have migraine because migraines occur periodically. I’m only 21 years of age and the past year has been hell for me. Had to stop work and school because I can no longer function with this pain. Any suggestions?
@@joseluistorres5785 Wish I had a suggestion. I've had my headache for 7 years. Know people who have had them for 10, 15 or more years. I'm not a doctor, so I'm not saying you have a New Daily Persistent Headache, and hope whatever you have goes away - or you can find a med that works...
@@joseluistorres5785Mine also started after pfizer covid bivalent booster, about 30 days after. Constant 24/7 headache, MRI's and CT scans all normal. Pain is about a 2/3 out of 10, it mostly feels like eye strain or a hangover. Still trying to get my neurologist to agree that it's NDPH and not vestibular migraine. Nothing I have tried has had any effect.
Thank you Paul for sharing your story. I am on a couple of fb groups with you and always enjoy your posts. Even feeling “shitty” has helped me. God bless
ah, thanks. Glad you found Feeling Sh*tty. It has helped me too.
Thank you for your video. There's not much info on this and few understand what it s really like. . Have had it for 5 years. I have much empathy and respect for anyone going through this. What meds have you tried?
Nortriptyline helps me a little bit, but doesn’t take the headache completely away
Thank you for sharing your story Paul.
Nortriptyline kids helps but doesn’t take the whole headache away.
Paul,
My 16 yr old daughter has ms and NDPH just like you. I’m praying someone figures out the treatment for the headache! ❤️
There a a couple of NDPH groups in Facebook. Nobody has found a miracle cure. You what you can do within your limitations. I hope your daughter's pain is minimal, and even goes away! Been known to happen.
@@paullima9713 yes, I’m on those FB groups already. The neurologist said to cut out all artificial sugar from diet for at least 3-4 weeks and the headaches should significantly reduce or even disappear. However, I can’t get my daughter to try this. ☹️
Have you tried this? If not, could you try it and let us know?
@@liviasmith8945 If it is a NDPH, I suspect cutting out sugar won't help. BUT... you never know what will, so she should try it! I don't put sugar in anything. Get a bit of it in bread, I suppose... I've been on 5 meds, and they haven't helped. Hope your daughter gets some relief somehow...
😭😭😭Paul you don’t deserve this😭 Empathy…pure empathy.
God bless your soul🧡💛💔
I suspect just about everybody has some kind of crap to deal with! But thank you!
Have tried 5 meds, No help. Have not tried steroids. Know people who have with no help.
You are kind. You are important. And you are beautiful 💜💜💜
Ahhhh...! Thanks. You are so sweet to say that.
Paul I have this as well (3 years now) although in terms of pain mine is more like 2-3 however its the fatigue that messes me up and impacts every aspect of my life. Am curious have you tried steroids? There are studies showing this has worked for some people with NDPH, especially those that have it due to post viral infections
I have not tried steroids. Tried 5 other meds. No help. Belong to NDPH group on facebook. Some folks have tried steroids: little to no relief, or some relief and then relapse...
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 😭😭😭
Sadly, there is little you can do beyond persist. Fight by trying to do want you love to do. Try to get engaged in something. Doesn't make the headache go away. But might help you forget you have it for a while. And don't be afraid to just sit in the dark with a cold cloth on you head and do nothing, when nothing is all you can do. If you are on facebook, join the NDPH Support Group. Sometimes it helps a bit to chat with others who are dealing with what you are dealing with.
I might have had this. Lasted 10-12 months or so.
Did it just randomly go away?
@@liviasmith8945 SNRIs
Do you ever get MRIs and if so what did they show?
have multiple sclerosis as well. Not related to my headaches. Have had a number of MRIs for MS. Have not shown anything headache related. NDPH is a strange fish!
@@paullima9713 I have had 2 MRIs in the past for my daily headaches. Both have shown some lesions which “ could be sequels of migraine headache or ms”. I just have a daily 24/7 headache. I noticed it come on after my first phizer vaccine for Covid. I’ve seen 3 neurologist all which say it’s not ms since my only system is a headache. However, none have been able to help me get rid of this constant headache. I don’t have migraine because migraines occur periodically. I’m only 21 years of age and the past year has been hell for me. Had to stop work and school because I can no longer function with this pain. Any suggestions?
@@joseluistorres5785 Wish I had a suggestion. I've had my headache for 7 years. Know people who have had them for 10, 15 or more years. I'm not a doctor, so I'm not saying you have a New Daily Persistent Headache, and hope whatever you have goes away - or you can find a med that works...
@@joseluistorres5785Mine also started after pfizer covid bivalent booster, about 30 days after. Constant 24/7 headache, MRI's and CT scans all normal. Pain is about a 2/3 out of 10, it mostly feels like eye strain or a hangover. Still trying to get my neurologist to agree that it's NDPH and not vestibular migraine. Nothing I have tried has had any effect.
@@joseluistorres5785 mine started after the Pfizer vaccine. How you doing now?