New Daily Persistent Headache (NDPH) Diagnosis | Diagnosis Discussion Series
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- Опубліковано 9 чер 2021
- In this video, I talk about my New Daily Persistent Headache (NDPH) Diagnosis. I talk about what NDPH is and how it affects me.
New Daily Persistent Headache Links:
www.ncbi.nlm.nih.gov/pmc/arti...
americanmigrainefoundation.or...
americanheadachesociety.org/w...
practicalneurology.com/articl...
Diagnosis Discussion Series: • Diagnosis Discussion S...
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#NewDailyPersistentHeadache #NDPH #WhatisNewDailyPersistentHeadache #MigraineandHeadacheAwarenessMonth #MHAM
my ndph story ndph treatment npdh treatment what is new daily persistent headache
I'm so glad to find your story and others like you! I've had these symptoms for 3.5 years at this point, beginning on August 12, 2019 and have run the gambit of healthcare trying to find a diagnosis. I'm not sure how it took this long to find this condition but the more stories I hear about the condition, the more I think this is the best fit diagnosis. Now I just have to find a specialist and speak to them for an official one! Thank you and every one in the comments sharing their stories, and for pushing past obstacles and people who have been dismissive or unbelieving.
I"m so glad you found the video. I'm sorry you have been dealing with these symptoms! It is so very hard when people (including doctors) don't believe our symptoms. I highly recommend a neurologist that specializes in treating headaches. I can get you a list of ones in the US if you are interested. Rooting for you. Let me know how it goes!
I was diagnosed yesterday NPDH after 2 1/2 years. I have had test after test, CTs, MRIs, and a Myelogram. I have been misunderstood by doctors and family. I lost my job and can't even work. I am grateful for you putting this video up. I am not alone.
Iv got this but scared to take amitriptlyne, have you tried anything or are you goin to x
@joycelynnebills1787 You are not alone. I'm sad to hear you have NDPH, but happy you have a diagnosis. It can be really maddening when we dont' have a name to put with what we are livign with. It is so hard to be misunderstood by both doctors and family. It's very very isolating. I'm sorry to hear you can't work. My heart is with you. I'm rooting for you. All we can do is take one day at a time. I'm so glad teh video was helpful.
@laurenbaldwin6068 I've not tried amitriptylne. The truth is that everyone's brain is different so we will all respond differently to different medications. You will find people that have good experiences and people who have had bad experiences with medication. The only way you will know if it is helpful for you is to try it under the guidance of your doctor.
As a 4 year sufferer of NDPH I relate so much to what you said in this video. thank you so much for laying it out so accurately and explaining in a way for those who do not have it that they can understand. I have had NDPH since Sep 14th 2017 when I was 19 and this video really gives me hope that there is a life I can lead.
Usually treatments are the same or similar to migraine treatments. Have you seen a neurologist or a headache/Migraine specialist? If not, that would be a good step. Take one day at a time. It can be very hard, but it can get better. You can do this. Rooting for you.
I started having headaches from around March 2021 when I was just 14. It interfered in my studies and my life. For around 8 months I did not know what I was going through. I told my parents and then we visited many doctors. From many neurologist to psychiatrist, we've consulted with the best doctors in the city but nothing helped. Not even a single day passed that I remember without headache. It is indeeed invisible chronic. It is very real. It does make you feel disable. But yeah as she said in the video we can live an amazing life with it if we choose.
Thank you so much for the video. It is very supporting. God bless to all the NDPH fighters. We can do this.
How are you doing now?
I've had NDPH since December 11th 2011. Life is incredibly hard. I've been actively seeking medical resolution the entire time and as such have been on just about every medication a neurologist or pain specialist can offer. Nothing has worked. You explain the condition quite well and I appreciate you sharing your thoughts. For those who find they are diagnosed with this condition, my best advice is to immediately start taking your own medical notes. Log your visits, the medications, your thoughts, etc. Doctors will always start out completely unaware of your situation, try to help over time, and eventually give you up to another doctor. The notes you take are critical.
I'm sorry it has been such a long time for you dealing with NDPH and fruitless in finding a resolution. It's so frustrating it is intractable for so many of us. You make such great points about being an advocate for ourselves, taking notes, logging everything, doing our own research, asking questions and keep asking if we don't understand the answer. Thank you for adding your thoughts! I really appreciate it! Keep fighting!
It's really good to see another person covering this on youtube! Need to raise awareness! It started the first year of my unviersity studies, which I have had to pull right back from and over the past nearly 3 years it has turned my life completely upside down.
I'm so sorry to hear that you have NDPH and also that it has disrupted your life so significantly. That is terrible you had to stop university. Sounds like you have been through a lot. Keep putting one foot in front of the other. Rooting for you!
@@IncredibleAnyway Thank you!
@@alexdelaney1975 Hi Alex my headache started just after uni. How you getting on?
I have a Google Alert for NDPH articles and have tried finding other folks with it on Twitter but never thought to check UA-cam until today. My headache began in 2006 when I was 13, most probably from stressful life events. Seeking relief has been fruitless but I am hopeful for more research and interpersonal connection as time goes on. Thank you for sharing your experiences!
Thank you for sharing! It is hard to find fellow NDPH-ers. Wow that is a long part of your life to have NDPH. Way to go for persevering and fighting through such a hard persistent heath issue.
Had a headache for approx 11 months now. Remember when it occurred. I was at work. Over right eye, around right side of head. Had it essentially every day since, except for a short stint when I had steroids for an upper respiratory infection.
36 year old male here, by the way.
Not sure what caused it, but I was going through some stressful life events (birth of second child, hip surgery of 1 year old daughter, stressful job, also thought I may have had cancer).
My headache is rarely severe in pain. Most often a 3-4 level. The most challenging part is the depression that comes from the constant awareness of the pain. I wake up with it, and go to bed with it. I can’t step outside and enjoy the warm sunshine or cool breeze without instant awareness of pain. Also, I have 2 children under 2, with another one on the way. It is very challenging at times, as they like to be loud and play on me etc, which most of the time is extremely uncomfortable.
I also developed ringing in my ear, which is persistent. That is not as troublesome as the headache, though it’s nothing I’m happy about lol.
My own theory is (I am a pharmacist, by the way) is that my headache is neuralgia related. I think perhaps my trigeminal nerve has become hypersensitive for some reason - cold, alcohol, and bending over can exacerbate my headache - maybe because of a stress event, or maybe post infection. You hear sometimes about people experiencing trauma developing type 1 diabetes for instance. Maybe something similar has happened to me. Or perhaps it is an autoimmune disease, attacking my cranial nerves, or various proteins related to headache are in a constant loop of overproduction.
I have seen a neurologist and various Dr’s, as well as received an MRI and MRA. Ruling out a brain tumor and unruptured aneurysm decreased my anxiety substantially and has allowed me to sleep better.
I don’t have advice for anyone suffering from this. All I can say is I feel you. You are not the only one who feels that constant pain is preventing them from being themselves and sucking the joy out of your life. I worry that my kids don’t get to see the genuine me, because I’m so much less patient and carefree and fun than I used to be. I used to literally wake up with a smile on my face. Now I wake up immediately aware of pain. I used to be much more excited about things - about life. Now I find it is much harder to be excited, because I know, wherever I am, or whatever new experience I may have, it will be tainted by the presence of pain.
I’m not trying to sing a sad song, but simply share my story. Some times the solidarity helps more than any medicine, and raising awareness of this uncommon and little talked about condition is a good thing.
To anyone still reading. Hang in there. Turn your negatives into positives. And if you don’t have the energy to do that at the moment, hold on to that sliver of hope that it may spontaneously resolve. After all, it spontaneously came about. Finally, to hell with this stupid condition. Don’t let it take away your choice to have a good life and enjoy the things around you that you can enjoy, even if it’s not like you used to.
Thank you *so* much for sharing your story. I am sure it will be helpful to others who read it! You sound like you are persevering well! If you haven't heard of or read the book, "The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma" by Dr. Bessel Van Der Kolk, I highly recommend it. It talks about how trauma affects the body and can affect it in ways you described.
Sounds like occipital neuralgia. right where the nerve runs
How are you doing now?
I just hit my one year mark from my NDPH diagnosis. I'm still trying to find my footing and although I do have good days, I still struggle a lot with my mental health. I'm so glad I found you!
I’m glad that you have some good days. Those are so important for us so we can have some hope. My heart goes out to you that you struggle a lot with your mental health. You’re not alone. I have too. It can be a very rough road. I’m glad you are here! Sending a hug your way.
11/26/2019 and still going. I was recently diagnosed with a connective tissue disorder and honestly believe my headache is connected to it. This experience reminds me of the movie Groundhog's Day especially in the scenes when Bill Murray wakes up every morning and hears Sonny & Cher singing the same damn song with a foreboding look of doom on his face. I just hope I get to wake up one day and it will be February 3rd. Thank you for sharing and allowing us this outlet.
I'm so sorry to hear that, Erin. Were you diagnosed with EDS? I know people with EDS (my best friend has it) who also have headaches (tho she doesn't have NDPH). What a great analogy with Groundhog's Day. Hoping for that February 3rd for you! Until then, I hope you are able to find ways to cope. I appreciate you sharing as well - it helps everyone who stops on this video to see that we aren't alone in living with this.
@@IncredibleAnyway Not EDS, undifferentiated connective tissue disorder/disease (UCTD). It's a little confusing but my understanding is that you have the connective tissue disorder (CTD) umbrella and under that umbrella, you have CTD's that are congenital and those that you develop. EDS is congenital and I typically see it considered more of a mixed connective tissue disease (MCTD) even though MCTD could also mean overlap syndrome which is when you have two distinct CTDs. UCTD means you have the clinical manifestations and abnormal bloodwork to confirm a CTD but do not meet the criteria for a specific one. I call it being in limbo because I have all the symptoms of SLE per se and have medical conditions that have been tied to SLE, but I do not meet the distinct criteria for SLE at this moment. I will say that there is some relief with having the UCTD diagnosis in that its confirmation something is wrong and doctors can't disregard my symptoms.
It’s currently 5 AM and I’m having a really hard night. I’m mostly just overwhelmed because I shouldn’t be dealing with this. None of us should be. I haven’t been sleeping so I wake up hurting (more than my baseline) and exhausted and I end up missing work. I hate to just complain, but this happens on occasion where I just can’t … I’ve been dealing with this for nine years and I’m so tired. 😭
I’m going on 3 months of constant headaches that vary in intensity. My dr mentioned NDPH to me. It’s really hard for me to accept that there may not be any fix. I’ve been struggling a lot since this started. Hoping to be referred to a different specialist to get more opinions. Your video made me feel not so alone. Thank you for sharing. I feel crazy trying to explain to people what I’m feeling.
How are you now?
I've been suffering with NDPH since June 22, 2020. Since then I've had "good headache" days and sometimes "don't talk to me I just want to be alone days" and my anxiety makes it even worse.. the pain is either in the back of my head along with my shoulders, sometimes in my temples, sometimes it's right on top and other days it makes all my teeth and jaw hurt. I've been through 8+ medications that my neuro rx to me and some made my migraines/headaches ever worse to the point where I felt pressure in my eyes. Thank God my MRI was negative. Up till this day I only try to cope with it everyday, and I've been holistic for the last couple of months only bc meds have made it worse. I try to pinpoint what makes my headache worse but i never really find an answer. I'm just praying that one day God can cure me from this. It's hard being at work with a headache/migraine every day. I stopped complaining about it bc I feel I annoy ppl with it and only I know the severity of my pain. Thank you for posting this video..
Your case...it's same like me....I'm only 17🥺
The ketogenic diet may really help you! Sometimes people don’t even know it’s actually a good allergy affecting them until they try keto. That’s why keto kelps SO many people with migraines
I’ve had NDPoH for 13 years and have tried epidurals, 8:12 Botox, many meds, alternative treatments, hypnosis, cranial sacral therapy, and manyother far out therapies. Now I’m doing ablation fatherssecond time. I use triptans every4 days and my headaches are very debilitating as well as frustrating. My neurologist handed me over to a pain spots specialist as she didn’t know what else to do about my situation. I’ve been to ER numerous times and the last time they gave me Benadryl via IV. Didn’t help at all. Sleeping is an issue too. Am trying CBD oils now too. Desperate for a normal life!
Thanks for making this video. 10 years in after viral infection.
Happy to! I'm sorry to hear you've had it so long!
22 years in after viral infection, too.
So I’ve started to become more interested in NDPH because my symptoms are very similar, I started having headaches in 2012 that wouldn’t go away and no one could figure out what was up, I was born with Hydrocephalus (which basically means I had fluid built up on my brain) two years later in 2014 I had a brain surgery and for the first time in two years I was headache free. What’s stumped me ever sense is that eight months later it came back and it hasn’t stopped since. I just started this video so I need to finish watching, but I’d love to hear more about you getting diagnosed.
Hi Maddie. Thanks for your comment! That is excellent you were headache free after the brain surgery. To me that means that something they did was helpful. I'm sad to hear that the headache has come back and hasn't stopped though. My heart goes out to you. What do your doctors say about the return of the headache?
@@IncredibleAnyway we’ve checked everything we can think of and nothing comes up so they assume it’s because I’ve got a shunt (a drain in my head that pumps cerebral spinal fluid off of my head) and that it’s something I’ll have to live with, but I started hearing about NDPH more recently and I wanna see if I fit the criteria for it.
warrior Bill here happy friday to you
Thank you for watching Warrior Bill :) Happy Thursday! (I've had a rough week and couldn't respond sooner! How are you doing?
I have been suffering with daily headaches for 7 months - they are covid related. I too remember the exact day they started. I've seen 2 neurologists who say they are chronic daily headaches. The pain is mostly back of head and neck, sometimes at the front. It really affects my work, very difficult to remain positive and upbeat when you're in so much discomfort. The one thing that has helped me has been accupuncture. It actually made the pain disappear for 4 whole weeks, which was wonderful. However they came back. Might try accupuncture again but its quite expensive! And the stress of money troubles does not help the headaches!
That is wonderful that acupuncture makes a difference for you. I understand about the cost being prohibitive! Agreed that the stress of getting treatment can sometimes make things worse! I'm sorry to hear you've been suffering for so long. Have you seen a Headache Specialist? They are neurologists that have gone to school for extra training and have *SO* much more knowledge about headaches than general neurologists. Here is one list of headache specialists in the US that you can search by your address. americanmigrainefoundation.org/find-a-doctor/
Keep me updated. You can do it. One day at a time.
My boyfriend has been suffering through this for the last 10 months.. has 25 never had a headache before. its been a mental health journey. bilateral head pain, he describes it as a pressure tight feeling, like his head is full of air. neck pain, fatigue, scared to take medication as he's never taken any before. thank you for making this video & channel as there is not many information on youtube.
I hate that your boyfriend is going through this. It is a huge change to cope with such a challenging headache. I understand his concern with teh meds- medications have so many side effects and it can be hard to try especially when there aren't really meds out there developed for NDPH. I'm glad this video was helpful for you!
It’s the same for me 🥺
@Hggsa736how are you doing now?
How’s he doing now?
Newly diagnosed NPDH, daily headache since 12/20/21 1st symptom of Covid. Thankfully I was able to get an appt with Neurology. The doctor was so thoughtful and understood NDPH. We are trying a 5 day treatment of Indomethacin… if that does not work he has a plan b,c,d… thankful and hopefully but at the same time sad and wish my daily life was not so affected by this!! Incredibly hard. Thanks for ur knowledge
I'm sorry to hear that you have NDPH, but love that you have a physician who is knowledgeable in diagnosing and treating it! Sounds like he has given you hope and that is key. I hope that your daily headache changes for the better soon. If not, now you know someone who has gone through it for 16.5 years. You are not alone. It is possible to have a good life with NDPH! Rooting for you!
Any updates?
How are you doing now?
Propanol and notriptyline is working for me .. it is lifting the heavy band around my head day by day... In March 2022 I will be having ndph for 3 years... Life is tough with it... But I have hope that possibly in next year I'll be headache free... It's normal to feel anxious but tell yourself that you will go through it fastly... Prayers and healing to all 😇❤️. My symptoms were tight band all around my head even in facial muscles and tightness in neck and shoulders . I have started gym now, on physical therapies and medication in low dose.... In 60 to 70 % better based on the tightness in head and I don't have pain at all now ... It's just tightness now...low in grade but it's still there and I still remember the date of onset 25/3/2019. God bless us all 😇
Thank you for sharing your experience. That is so encouraging to hear that you have gotten help from the medications. I also hope for you that you will be completely headache free soon as those meds are helping you! Please keep us updated on how it goes! Blessings to you.
Update *
It has been 3 years of NDPH. And believe me it's 90% resolved with Notriptyline and propanol. Everyday I can sense tha tightness is going in neck , shoulders , head and facial muscles. In my case it was a very tight band originating from shoulder to my full face and head. I guess I had the remitting type of NDPH which is going away with the help of these two meds as it helped me to balance my brain chemicals. And my anxiety is going down as I am feeling sensation. I hope it will resolve completely in few months and hope it doesn't come in future 🖖. Prayers to all and Healings to all. Ask your neuro physician about this combination of medicines . It helped me alot... But one bad thing about Notriptyline is that I am taking it for now almost 2.5 years and it increases my pulse rate resting.. but thanks to propanol which mantains it 😂.
@@sharmilaanubhav hi Anubhav, when you first got NDPH, did you have a lot of pain? Would be great if i could connect with you to learn more about this. i have a friend who has had NDPH for the past 3+ years and seems to be getting worse.
@@sharmilaanubhav 🙏🏻❤
@@sharmilaanubhav bro can u share ur inta id i want to connect u personally please if it's possible because I am suffering with this from 6 years
I don't have this diagnosis yet as its only been 2 months.. But, unless they find something, I think this is what theyll say it is. It started March 6th 2022. It's been very debilitating. I'm already disabled and living with chronic pain so having something come along and rip away what little life I had has been disheartening. I'm at the point now of trying to learn to live with it. But I'm not sure what that will look like.
I appreciate your video. It is encouraging to know that others have found ways to cope.
I'm so sorry that you are dealing with this too. Debilitating headache is really so hard. I hate to hear it is layered on other chronic pain/disability...adds insult to injury. My heart goes out to you. It's hard when we don't know how a new diagnosis will affect us. You are a warrior! I'm rooting for you! You are not alone. Sending a hug your way.
How are you now??
Actually, I'm doing very well. After 6+ months of continuous headache - and with a neurologist wanting to put me on depakote (for life) - I decided to try seeing a chiropractor. She made an immediate difference - an obvious change in the headache pattern. It took a few months of steady small treatments but she got rid of the headaches. Since then I've only had a very few short headaches which all had very obvious causes (usually someone wearing a strong cologne). However, the experience of having one's life completely ripped apart and altered beyond recognition leaves a residue of trauma that takes some recovery in it's own right. Turns out that not all of the threads can just be picked up again and it leaves you doing a sort of mental spring cleaning. But now things are going well.
@marydowns4215 I’m so happy to hear you are doing well and the headache has improved! That is wonderful! I can understand how it would leave you in a difficult place mentally. Very good points how not all threads can e picked up again. These experiences change us in profound ways. Way to go with doing a mental spring cleaning and taking care of yourself. Thank you so much for sharing!!
My daughter (11 yr old) was diagnosed with NDPH in January 2023 and it’s awful seeing her suffering daily with pain. We went to every single specialist in town, but only the neurologist mentioned NPDH. We don’t know what to do.
Thank you soooo much for the video.
All the best.
Oh man, that is rough to be diagnosed with NDPH at 11 years old. You have a warrior on your hands! So proud of her! And you. It is so hard to be a parent of a child with a chronic health issue. That is heartbreaking to see your daughter suffer daily. She is lucky to have you in her life - advocating for her taking her to different specialists and looking information up on the internet. I’m so glad that the video was helpful. If you aren’t satisfied with the neurologist your daughter is seeing, there are neurologists that specialize in treating headache disorders. Not all doctors are created equal - as you’ve seen. In case you are in the US, I’ll attach a list of Headache specialists. If I can be of any further help, please let me know! Wishing you and your family the best.
headaches.org/resources/healthcare-provider-finder/
My 11yr old daughter have non stop headache for about 8days now
My daughter has had a constant headache since Nov 2022. She was 11 when it began. I take her to a headache specialist, but so far none of the medications have worked. She's on a 504 plan and only attends school for her core classes in the afternoons. She sleeps in until 11am daily.
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’m not sure what I have but I’ve been having headaches every day for around 3 months now. Some turn into migraines that make it hard to do anything other than lay in bed, my headaches are also usually resistant to over the counter medications. Any ideas on what it could be?
Hi Hailey, I'm so sorry to hear you are going through this. The best person to tell you what could be going on is a doctor because they have access to tests to be able to determine what is causing your daily headaches. A lot of diagnosis with headaches is ruling things out. For example an MRI or CT scan can look into the brain and make sure everything is okay.
Most often daily headaches are from some other benign source, but it is really important to talk to your doctor to rule those more sinister things out.
Sometimes people can have chronic daily headaches when they are taking medications too often and it actually starts triggering headaches rather than relieving them. I know that sounds strange, but it is called "Rebound Headache" or "Medication Overuse Headache." Here is a good article on it: migraine.com/headache-types/medication-overuse-rebound
Early on when I started having daily headaches, I developed "rebound headache/medication overuse headache" because I was taking over the counter meds daily. The answer was to significantly limit the amount of days I take medications to treat the headache. My doctor limits me to no more than 3 days a week of taking acute medications. That is very hard as I deal with daily severe head pain, but it is vital to not make the problem worse.
If you don't have a neurologist, that would be an ideal doctor to go to. Ones that specialize in headaches are the best, but can be hard to find. They are called Headache specialists. Your primary care doctor might be able to recommend someone. Or you can click on the link to find a headache specialist in your area: americanmigrainefoundation.org/find-a-doctor/
Let me know if you have any other questions and please keep me updated on how things are going!
I think I've found a video from a doctor that does what I requested 3 weeks ago. But you invite your viewers to reach out. I'm still in the phase, 9 months in, where I'm getting referred from doctor to doctor because nothing works. Very hard to deal with arranging for all this treatment, let alone the often severe headache pain itself. I'm really curious how you manage to have some quality of life. For me, starting to go ahead and do things I would typically avoid has been helpful. Medical cannabis is helpful where no fewer than 15 prescription meds have failed. Working with a psychologist on accepting the pain experience, when I can, helps some. I've worked 1:1 with a yoga therapist and that helps with getting some peace of mind. Lots of other things have failed. None of the helpful things were recommended by the mainstream medical professionals, even the psychologically treatment for chronic pain, which is not an alternative thing. I just figured things out myself. But I wouldn't say my quality of life is good, and my career is pretty much over. How do you do it?
So my headaches started on June 23rd. I thought I had a head cold. But the headache kept on and got worse. So I did an online doctors appointment and was prescribed a migraine medication. It did not help at all. So I waited a few more days and finally went to the ER. Side note I got a terrible migraine 10 years ago and went to the ER and the migraine cocktail worked that time. I was hopeful on July 3rd it would work again. So we did bloodwork and a CT scan. Everything looked normal. The morphine didn’t even help the headache. He sent me home with three medications. They didn’t work either. So the ER doctor recommended that I see neurologist. So I went on July 15th. Was prescribed another medication, this would take the edge off but the headache was still
there. Oh and on July 4th I ran a low grade fever for one day, never above 99.6. The neurologist wants to do a lumbar puncture to rule out meningitis. (ER doctor ruled that out by the CT scan and bloodwork). I told the neurologist no. She wants me to do an MRI with and without contrast. I said ok. So today she prescribed me steroids. I also started taking magnesium and drinking loads of water. Ice and heat. I got a neck arch thing to help with the pain. I’m at my wits end. So I’m thinking from what has been going on with me I’m thinking it’s this type of headache. I also asked the neurologist if this could be somewhat stress related ( my mom unexpectedly passed away on April 8th). She said not likely. So thank you for this video it was so comforting. But I’m scared to have headaches forever. Anyway thanks for the video and for reading my story. 💕
How are you now?
@@connorwogen8106 Some weeks are better then others honestly. Some weeks I’ll go days without a headache then for two days I’m in bed. 🫤 But I’m better then I was almost two years ago, or maybe I’m just used to them by now?
Thanks for talking abut this. Mine started when I went off a medication I'd been taking for a while. It's been 2-3 years, but I don't actually remember an exact date of onset. The feeling is incredibly hard to describe, which sometimes makes me feel as if I'm responsible for a misdiagnosis of what's going on. It feels as if my brains gone numb or has pins and needles. I tried Botox for a while, but it didn't do anything. And more recently I was on memantine/namenda, which may have helped a little but it also caused extreme fatigue. My neurologist has just prescribed CGRP inhibitor injections but I haven't tried them yet. I'm worried about making things worse by running through a bevy of medications, especially since I believe medications are what caused this in the first place. I would like to work on acceptance.
Hey Kelly, from Boston
Hey Tool Guy! How is Boston? :)
Boston is great today!
I’ve had NDPH since November 2021 but it’s really weird though because its not painful, its very light. Sometimes here and there it hurts a tiny bit and i can feel it throbbing a little bit too and that’s about it. So yeah it’s mostly just kind of annoying and wondering when will it go away.
That is wonderful to hear that it isn’t too painful. I bet it is still annoying though!
I got this headache Wednesday 17th, it is dull, sometimes it lights up a little to say hello, then goes back down, always cognizant of it 24/7, checked into er 4 days ago, blood was normal, ct brain scan they said normal, gave me an iv for migraine didn’t do nothin, I’m not taking anything, seeing a doc tomorrow. .. location for me is only frontal, sometime both lobes sometimes just the middle, feels warm at times but I never have fever, then anxiety which I never had is in play as a result to my curiosity.
How are you doing now?
@@connorwogen8106becuz the mri was good I just decided to accept it knowing I’m ok and after several more weeks it sort of just dissipated away
I am on year four. Is there anything you have tried that has at least lessened the pain? Is there any hope that this is not lifelong? I have tried acupuncture, massage, chiropractor, botox, medication. A headache specialist is recommending botox in a different area, physical therapy, and meditation. Also a new medication topriamate.
My heart goes out to you. Yes there is absolutely hope that this is not lifelong. That is excellent you are seeing a headache specialist. And if you run out of options with him/her, you can always go to a different one. There are over 100 medications that are used to treat Migraine which can also used for NDPH. Verapamil is one I've heard people have help with for NDPH. I think it is great you are trying lots of different types of things. A multi-faceted approach is the best in my opinion with medication and non-medication treatments combined. I've never heard of Botox for NDPH, but you never know what could help! We can do this. One day at a time.
I have had NDPH for 32 years,tried just about everything. Not one second without pain. My neurologist is recommending monoclonal antibodies such as Erenumab injections or Galcanezumab injections. Has anyone tried either with any results?
Hi Kate, I'm sorry to hear you've been dealing with NDPH for so long. It is hard to go every second with pain. I see you. I think it's important to remember that most people who do respond to meds tend to go on with their lives and don't comment on things like this. Also, everyone's brain/body is very individual, so one person might respond to a med and someone else might not. I would say, if you want to see if it helps, it would be worth considering.
I suffer from this headache too. Do you get facial pain with it? My nose hurts the most. How do you deal with the pain? In my case I am trying journal speak as I heard of sucess stories around NDPH.
I'm sorry to hear you suffer from it too. I do not get facial pain with NDPH. That is too bad your nose hurts the most! I've not heard of that before. I'm going to be making a video about how I cope with NDPH & Migraine. However the short answer is that I use a lot of ice to try to dull the pain. I use distraction techniques. Taking care of my mental health also is vital to taking are of my physical health.
I hope that the Journal Speak is helpful for you! Trauma can definitely affect the body in many ways. Let me know if it is helpful in alleviating your NDPH. I am reading this book called "The Body Keeps Score: Brain Mind and Body in the Healing of Trauma." I highly recommend it.
Look into contact point headache, thats a hallmark symptom.
I had this ongoing headache that started about 5 days ago. From the moment it happened my feelings were this headache is different and could last a while. Immediately got with my doctor and got a referral to a neurologist. It feels more like a tension headache with some occasional pulsing sensation. Kinda feels like someone has a hand on the top of my head and is starting to squeeze. No over the counter medicines seem to respond. I’m only 28. When I got the headache I was under a bit of stress from previous conditions I am still trying to diagnose. I want this to go away but based on this video, I wonder if it’s safe to say I have this and start trying to learn to cope. Idk of worrying and stress is linked but if it is maybe reducing that is part of the cure.
Sorry you had to go through this for so long with no answers. That’s gotta be frustrating and scary. Did you try any anxiety meds or felt like they helped at all?
It started about 3 weeks ago for me. I know the exact day and it hasn't responded to over the counter treatment as other headaches I've had in my life. This one has been persistent a few days a week some days or portion of the days more intense other days very mild and I can physically work without hindrance. Thought it was a sinus infection but after finishing the Z pack the headaches still persist. Going to get a CT scan today and blood work today.
@@tmt6145 hey I was wondering did you find out what was the cause
Hey
@@Com78655 @TMT I am also curious what you found so far. I haven't found out anything yet. My MRI and everything is normal. Ruled out a growing brain tumor. I am currently looking into a possible TMJ issue. Anything that can explain the odd headaches I have been having. Its probably not NDPH though. I am guessing @Incredible Anyway has looked into all this stuff already
@@brandonevans4773 damn you’re still getting headaches? i’m on month 2 atm & dying. i went to the eye doc a week ago and found out i had a light astigmatism. just picked up my glasses today. have u tried a night guard? i’m working on getting one for myself as i know that i grind my teeth at night
Hi! I’ve been having constant headaches for over 3 months now, 24 hours a day with no pause since it started Aug 1, 2021. I’ve been seeing 5 different doctors with no luck and finally got an appointment next week with a neurologist. I’m a full time student + I work 4 days a week and I really struggle with finding out how to balance my pain with the life I’m living. From 1-10 I would say my pain is mostly 6, some days better some days worse, so I’m just wondering how is it to balance work with pain? Several days I’ve had to stay home from school and work, and I hate the fact that my pain stops me from doing such important things. I don’t want to become a person that just stays home but in these three months I haven’t found a middle ground to be able to balance my pain with my other important tasks in life.. do you have any advice? ❤️
I feel you
Same here! I’m sorry you are feeling the same. Mine started after my COVID vaccine :(
@@120Rina my son started NDPH the next day after Pfizer vaccine in May 2021. He has been struggling since then.
How are you doing now?
@@qianwei9474how is your son now?
I've been ill since September 2021, feeling difference in my breathing, fatigue, heart palpitations, unable to sleep. Had 2 near fainting incident in the same day. In November I started hearing on and off my pulse in my ears then in December started feeling tingling pain bilateral which moves from the back of my head to the top of my scalp everyday upon until about mid January it turned into a persistent headache non stop, sometimes pulsating/squeezing sensation from the back of my head to my face, under my jaws, in my mouth and I would get different sensations all over my body stinging sometimes burning, these sensations would happen when the headache intensifies. It's really really debilitating and I just can't function. Sometimes it would feel as if something has hit me in my face. 😔🤕. I'm literally tired and frustrated, most times I have no enthusiasm to do anything especially when the pain intensifies.
Sorry everything started September 2021. I've seen a Neurologist recently and have diagnosed me with anxiety disorder so I've just started taking Cymbalta.
You and all the others that has been going through this for years are all just so strong being able to accept it and can live with such pain for so long. If this is what I have, I hope I can find that strength within also.
I've seen a Neurologist recently and have diagnosed me with anxiety disorder so I've just started taking Cymbalta.
You and all the others that has been going through this for years are all just so strong being able to accept it and can live with such pain for so long. If this is what I have, I hope I can find that strength within also.
I'm so sorry to hear you have been going through so much. I can see why you would be so frustrated. Being debilitated and unable to function is *SO* hard. Of course I hope that this is not a long term issue for you, but if it is, you will find the strength to keep getting through. It has been 16.5 years for me and how I have done it is take one day at a time sometimes one moment at a time. And I have really focused on finding some good along with the bad. But it took time for me to learn how to endure and figure out how to have a good life with the rough stuff. If you haven't seen my video on "How to have an incredible life with very real challenges." I hope you will check it out here: ua-cam.com/video/AzCrRRrKXWw/v-deo.html
So glad you saw the neurologist and I'm hopeful for you that the Cymbalta helps. If you continue having the headaches and don't find help from the treatment you are getting, I would seek out a local Migraine/headache specialist (neurologist that specializes in treating headaches). They are the best doctors for headaches and more knowledgeable and skilled than general neurologists in diagnosing and treating headaches/migraines. You can search for a local one here: americanmigrainefoundation.org/find-a-doctor/
Please keep me updated on how you are doing. You can do this! One step at a time.
@@IncredibleAnyway Thank you so much for the incredible words of encouragement. You have been through alot and have endured for so long 🙏🏾. Yes thanks for the advice as well and I will definitely watch the video. Unfortunately I live in the Caribbean, Jamaica to be specific, so I wouldn't be able to see one of your recommended doctors, however there is one Neurologist that specialize in treating headaches on the island, I will definitely make an appointment with her.
Hows does this affect your life?
How did you get diagnosed?
It is hard to focus with a head pain 24/7. I was diagnosed by a neurologist that specialized in treating Headaches & Migraines. 2:28
@@IncredibleAnyway do you still have
I´m a 25 year old. Had NAPH for over 6 years and I remember the exact day it started. It feels like i´ve tried about every medication out there. Being a medical student it gets super rough and every day is a struggle. I´ve gained over 10kg as a sideeffect and no medication helped more than 2-3 months. Has anyone tried botox where it helped? I dont know anyone with NDPH, so it is difficult to find someone to talk to or relate to. Not many people understand the struggle behind living with invisible chronic pain.
I'm sorry you have endured NDPH for so long. Kudos to you for going to medical school with this condition. That is so impressive. I see you, warrior. You must be so proud of yourself as I can see how every day would be a struggle. 💪🏻 Chronic pain adds a whole other stress on top of what you are already dealing with at med school.
Most people who are commenting on posts like this are those of us who have not found treatment help. So whenever you ask about treatments, remember the people who Did get help from a certain treatment are probably out there living their lives and wouldn't come here to comment. I have tried Botox, but it did not help me. However it doesn't mean you shouldn't try it if you and you doctor think that is a good option.
I'm rooting for you. You are not alone. Keep fighting and putting one foot in front of the other! 💜
I did 2 rounds of botox and declined the 3rd injection because I did not feel any improvement and didn't see the benefit in injecting myself with more paralyzing toxins. You are a med student and are probably aware that the long term effects are unknown. From what I researched (and yes I went down a rabbit hole), people tend to see improvement around the second injection. I came across one research article that one person went into remission with botox. Hope this helps.
My son did one round Botox and did not feel any improvement. He probably will try second round
I'm suffering from NDPH since almost 3 years after Covid Vaccine , it's very hard to live with NDPH , i went to the doctor and i took alot of medications but no response , please i want anybody to help me . I couldn't be able to do anything ( work ) .. please help me what to do !! Can botox do anything ?
Hi there, I’m 3 years on with a headache after a Covid vaccine. How you getting on?
20 years for me with ndph.
Oh wow, my heart goes out to you! Keep fighting!
@@IncredibleAnyway have no chance, I will keep fighting, best wishes!
I have ndph from 1year 3months
My heart goes out to you. Rooting for you.
I got rid of mine after 6 months by taking doxycycline. I think it was due to infection in my gut that caused neuroinflamation. I would recommend everyone who cannot find a way to get rid of it, go and check your microbiome first with functional doctor. You might have candida, pathogenic bacteria leaking toxins into your blooodstream. GI MAP or GI effects or any other reputable gut test may be helpful.
I'm so glad to hear that you were able to get rid of your headache caused by neuroinflammation. That must be such a relief!
@@IncredibleAnyway yes it was a complete worst time in my life, very scary experience. I still have some remaining symptoms that happened around month 1 of my headache I also got infected with Covid , so I developed burning pain in hands and legs also. The head pressure went away but I still have some hand issues slowly getting better though. I’m trying a lot of different supplements fasting anti inflammatory diet to heal my gut.
@@Jojoma449have you tried probiotics? Also what is a functional doctor? How do I get this test can I go to patient first?
@@Jojoma449I had knumb was in my fingers it’s symptom from anxiety from your headaches. It goes away in its own it’s called TMS symptoms made by stress meaning they go away on its own once u stop stress
Do you still have NDPH ??
Yes.
@@IncredibleAnywayhi iv got the same docs have told me to take amitriptlyne but im so scared have u ever took meds for urs xx
Have you tried ketamine
Over a decade ago, I flew across the country to see a Migraine doctor and got some outpatient infusions. He gave me IV Ketamine for Migraine but it was the only time. So I couldn't say if it helped or not or if it would help NDPH.