I have had NDPH Headache for nearly a decade 2009-2019. I need an outburst, how it happened.
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- Опубліковано 29 лис 2024
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I'm not sure what this video is or can offer. Maybe some empathy at most.
Correction: When I said self sabotage I meant to say self deception
Note: I had botox injections, the muscles were so stiff, they said it was like putting needle into a ice cube, like they were crunchy.
I wept, sobbed like a baby. I have never had anybody describe this torment. For me it’s been since November 2009, with no relief. I’ve given up. I lost my career, my marriage is on the rocks, my life. Thank you
I sometimes think I'm just being soft and weak mentally and I should be pushing myself to the max, because there are people missing limbs, but at least with those disabilities you can still feel more or less YOU, but there are little to no short term rewards in surviving with NDPH, even the process of just doing it, its just grinding really with no definite end in sight. I'm here to talk with you if you want.
Hey thank you for making this. Mine started on 25th September 2023. It's a stabbing kind of pain bilateral. On flare-up days I can not get out of bed and that sucks in general and especially at 15 years of age. The brain fog not even to mention, with school and everything. I'm forgetting things as simpe as my own adress which freaks me out. I'm glad knowing this is not nearly as lonely as it feels, though it's kind of scary hearing all this at the same time. I hope to find something that helps me eventually. Anyway I wish you all the best of luck and endurance. 🫂
-Feli
I believe I have had NDPH since feb 2021. I am curious if anyone is a Nicotine user. I initially had a sinus infection and was taking sudafed for the few months before onset, which came very suddenly while I had used a THC vape. at first it was intense stabbing migraine like pain in my temple for about 2 weeks, until cts and mris revealed nothing significant, the pain settled into a Pressure/Discomfort which expanded to my forehead and across the left side of my face. I have been told by every neurologist that nicotine shouldn’t have anything to do with it, however the few times I’ve quit I have experienced some days of relief and then the pain seems to come back. I wear hats all the time now because the compression gives me some, not relief, but help in dealing with the pressure/discomfort. At the time of the onset, I was worried I had a minor stroke, although no signs of stroke were seen in imaging and I have no cognitive symptoms, just a constant discomfort and pressure in my face, forehead, and temple. I have wondered if I could be experiencing mild trigeminal nueralgia, but NDPH seems to make more sense. I feel similar to you as I have never been depressed at all, I am able to pretend that everything is fine when I work and am in public, but it is very difficult. I have trained myself to fight through even though I am in constant discomfort. Have seen many neurologists and have tried topamax, verapamil, indomethacin, amitryptiline, gabapentin, several other anti depressants, and none seem to give me any relief at all. Some days I feel it is much more manageable than others. It seems to happen in waves, where I will have a week or so that is easier to tolerate, followed by some days where it gets really bad. I am religious and I pray every day to find answers and eventual relief. I will continue to pray, not only for myself, but for you and all others experiencing this type of pain from NDPH and other rare headaches. We cannot give up, and we are too young to have to suffer through this for the rest of our lives. God Bless and let’s all pray for each other.
I have NDPH and it has only been 7 months for me. The hardest months of my life and I already had depression before so now it's multiplied by like 100 since I can't do anything a normal 16 year old can do. I guess the only thing I can take from this is a different perspective on life and much better pain tolerance. I live in scotland and never met anyone like me before..
I understand. I genuinely do. Always here to talk for what it's worth. :)
Happened to me 15th October 2019 and it lasted about 18 months of constant headaches and throbbing that would vary. I came across ur video a few years ago and it made me feel so much better bc I felt like no one knew what I was going through or could understand. I’ve been on a 40mg propranolol dosage twice a day for over a year and at first nothing worked but it’s given me so much relief for the last months I hope everyone can find something that helps them
Cheers mate! I'm part of the NDPH club like you and slowly drowning from the same relentless tide of pain that inevitably heads our way. On July 1st I'll be 3 years in. I'm a bit more lucky than you in that mine started much later on in life so I feel for you there. Also my symptoms are a bit different as my pain is concentrated on the entire cranium and muscle tension that builds up in neck and shoulders. A lot of the things you are saying in the video I understand only too well, especially the part about not being a whole person. In my case the pain is so severe that I had to quit my job, my schooling to become a biologist and pretty much gave up even most of my hobbies out of either apathy or fatigue. My day consists of doing one or two chores, playing an mmorpg to pass the time, and spending 30 min. to an hour interacting with my wee ones before I become too tired. I'm like a ghost of a person. I'm there but I'm not. Similar to you I'm not depressed about this situation but simply accept my new reality and role within it.
My biggest wish would be to have something that could give me relief but alas I've pretty much run out of medicine and therapies to try at this point. It's also a little dispiriting that no one can relate or understand my condition. I went to a support group for headache & migraine sufferers but my issues and experience were just too alien for them to relate to and no fellow travelers with whom to confide. My family at first was confused, angry a bit in my inability to overcome, then becoming detectives in search for clues. "Try this therapy it helped cure wife" or "maybe have them check you for lime disease?" At times they blamed me for not following my protocol well enough, "you need to be more mindful and meditate!" Now after all this time they kind of accept the beaten person who stands before them.
I can see the suffering and toll this condition has had on you and all I can say is that I understand somewhat where you are at, and empathize with you greatly. I haven't been traveling on the road nearly as long but I think I've got a good idea. I tell people I meet or doctors that my life is basically like the movie "Groundhog Day" with Bill Murray, except instead of learning new talents or realizing the moral of the situation to become a better human being I just relive the same terribly shitty hangover of a day. A more nihilistic adaptation I admit and just lacking much of the original humor.
Thanks for publishing the video, it's kinda nice to know that I am not alone out there and others are fighting the same fight.
- Kris
Thanks for the comment, I made a reply weeks ago but it appears youtube messaging is wonky, giving up hobbies interests because of apathy should make me feel bad, but I feel more numb, the sparks just do not fly anymore with the things that I used to find a flow with way back prior to 2009, more than happy to talk with you at any time via skype or the like. There, but not there is hitting the nail on the head, I've used the Groundhog day example to explain it to people as well, why would would I want to drink, I have NDPH!
No fucking way mine also started july 1st 2020.
Hey John,
You are not alone in this mate. Ive been going through the same thing. For me though it actually started on a run was doing. I felt it start to hurt on my left side of my head and being the ignorant 17 year old I was I just kept pushing to get through my training session until I was on the side of the road throwing up because of the pain. It has sense never gone away. See before all of this headache bullshit I was one of the top in my state of North Carolina for XC mountain bike racing and had a D1 Scholarship to a North Carolina school. Now can barely make it through a day living a "normal life". By 'Normal life" I mean hardly doing anything. This huge lifestyle change has definitely been the hardest part of this whole fight. All I want to do is go to college and experience my life as a "normal" 18 year old. However in my current state, college, something I had worked so hard for and looked forward to for so long in my life is now something I fear getting through. I really have been just trying to take my life day by day and not try to think to hard on what the future holds for me. Lke you said though you really just become quite numb to life in general no longer really caring what others think because you know they cannot understand what you are going through. I just keep praying every day that It will one day just magically go away like I have heard in stories. That would truly be the best day of my life. Thank you much for making this video before this I really haven't seen anyone with my same condition just heard about it through doctors. I empathize with you greatly and wish you the best of luck. I'm sorry this has happened to you.
-Luke
Thanks. I really needed this, you don't how much your comment and so many others here, mean to me, from the bottom of my heart thank you :D I want the very same for you too!
It hasn't been diagnosed, but I have had something exactly like this for 18 months now, after a car accident. I just started sixth form (at 16 yo), and already feel a great cognitive decline. For the entire school day, and any time I need to concentrate, the pain ranges from 8/10 to 11/10.
I suffered from headaches most days, constantly taking panadol, finally i learnt to stop them
Ive had NDPH since I was 25 years old (2015), and I will be turning 30 next month. Like you, Ive never felt depressed, and some doctors tried to convince me that it was a mental health issue instead. I finally found a doctor that was a specialist and could give me a diagnosis, some hope for the future and develop a treatment plan. What you said really hit home.... the pain may be like 5 on a PAIN scale, but what this disease is doing to me is destroying me, and that is a 10. Ive never thought about it that way, although I most certainly feel like that. If your symptoms become unmanageable again (mine fluctuate) I recommend coming to America again, but going to Jefferson Headache hospital in Philadelphia. They are wonderful there and they dont give up on you. I was a patient there, and now I see a neuro in Connecticut (who I was introduced to at jefferson). Thank you for your video.
Sorry for the long delay in replying and I do deeply appreciate telling me what's going on with you. I'm sure you know this all too well, for me its all the potential of what I could be and yet i'm not it, but what I could be physically there to experience, yet not end up experiencing because NDPH is blocking the same channels for pleasure and enjoyment and thus leaves you with a warped view of reality 24/7. You lose your self of what makes you, because your not sure what you (you and I) are anymore. I care deeply but there is profound sense of apathy on everything caused by the pain that dulls the world and your brain tries to protect itself. I'd be happy to talk via skype Lauren or through whatever channel means you find easiest.
@@johnmcternan4157 Im so sorry you didnt get my response sooner. It must have not submitted after I clicked "reply". Im going for a lumbar puncture in a couple weeks.... Im nervous, and I dont think its going to show anything abnormal. They are looking for opening and closing pressure. No pressure has been seen behind my eyes during office visits. This last year has been crazy. Ive come off some heavy medication that at one time was keeping the insane pain away, bc it no longer was working. With me, every day is different. Which can be beautiful. Some days the pain is low, and manageable, and others I am holding my head in pain missing out on life. I guess that a blessing and a curse, because I cannot figure out why. At least I have some good days. What i have found to be the MOST HELPFUL is the DUAL CEFALY device.... its kinda like a tens unit, specifically designed for Migraine. In the states, its not covered by insurance, and its 500 dollars. But to me, its priceless. I use it every single day. Some times for hours a day. It doesnt take my pain away but it allows me to still get out of the house on the bad days and go to work or be a part of society. We could definitely skype, and I am available by email as well!
💔 Thank you for making this video. Thought I was alone. If I ever find a way to get rid of this, you’ll be the first to know 👍🙏🙋🏻♂️
Greetings from Norway 🇳🇴
Please do :)
Dear John,
I’m in my forties and have struggled with NDPH for 9 years. As a matter of fact you where the first person I heard talking about NDPH from the perspective of a patient. Up until then I felt I was the only one. Appreciate your videos and your honesty about the struggle.
Would it be ok if I send you an email?
Greetings from Norway 🇳🇴
Martin Hansen
I have had NDPH for almost 23 years. I take topomax and zoloft which makes it better, but it doesn't eradicate it. I have found that pain medications help, but you cannot take those all the time. Edibles (1/2 THC and 1/2 CBD) help. Clearly, you need to take those after work. I was also asked 100 times if I was depressed - not. I have found meditation also helpful. I live in MA and we have excellent healthcare, but it is intractable and there is no cure. I have tried everything: herbs, accupuncture, massage, different meds, etc. I also suffer from short-term memory issues, but I do the best I can. Dwelling on it makes it much worse.
I'm sitting her bawling out my eyes jfc. It's my 7th anniversary with my NDPH and I identify so strongly with the frustration you feel. I'm loosing the plot spending every day sitting at home doing f all with my life and I share a lot of your worries. I'm also Irish and have been to a few of the same neurologists but I'm still serching for a treatment that offers any relief. Thank you so much for making this video, it can't have been easy and but I think you did decent job of pushing through the brain fog and speaking up. If you ever need someone to talk to or vent please let me know and I'd be happy to video chat with you. You deserve a hug and a solid cry.
Thanks for the comment, you can talk with me anytime too :)
Has it changed for you at all since?
@@johnmcternan4157 It has a bit in different ways. I haven't been able to find any form of medical pain management yet, and I'm nearly out of options, left to try but one of the meds the tried for pain relief was a anti depressant/anxiety med and it sure did fix the anxiety I didn't realise I was batteling with and my brain fog lifted a lot. Means I have a little more energy to try cope with my NDPH. Also picked more symptoms tho which sucks. Chronic fatigue has been kicking my ass the past year or two and recently I've been dealing with episodes of semi paralysis which is definitely a new one to me. I've certainly learnt more about NDPH from a medical standpoint, especially how badly understood it is and how few papers exist on our condition but also there's about 4000 cases of people like ourselves in the country. How about yourself, any developments good or bad? How are you copeing ongoing toll it takes?
We are all in this together ❤
I didn't know you commented Jaded, well now you know my deal. :)
YO! when i tell you i've never laughed so hard! I'm 7 years into this NDPH thing and i felt every PIECE of what you said. EVERY PIECE. Like you, mine started with some sort of VIRAL SINUS INFECTION IN COLLEGE! Had multiple surgeries, explored the TMJ route, had the retainer, meditated, ive tried it all! My main symptom is just insane unrelenting constant pressure in the head and sinuses along with crazy muscle tension.
CURRENTLY working on a new theory. Basically it's the hygiene hypothesis; our bodies might be overreacting to that viral infection we were exposed to. Basically we grew up too clean and sanitized so in our Adult life the body wildly over reacts to antigens, resulting in unnecessary chronic inflammation. Basically i think we gotta tell our Immune system to chill the fuck out! Let me know what you think. And stay strong bruh
I will write a longer comment to you, but in college at the time this started one of the bedrooms in our apartment had severe damp and mould on the ceiling that caused my housemates asthma to reactivate after many years, I wonder did I catch it and react in a different way to him.
Jostling John that sounds totally plausible. The question is why hasn’t the body been able to get over it after all this time
I was diagnosed this year (at the age of 19, I suffered from 16 y/o but this year is by far the worst) with hemicrania continua - constant pain of my left temporal area with light sensitivity and so far nothing has helped me (including a high dosage of indomethacin which helped before but stopped 2 months after, botox and steroids shots to the back of the neck and head) , it's quite rare so I couldn't really find other people on social media that shared their journey so I actually felt your video helped me feel somehow understood. I had to drop off my last year of law school because I'm unable to concentrate. I feel my life just abruptly ended and can't do anything because I'm just so tired all the time to the point I don't have energy to cook food and even talk. I'm not depressed but feel frustrated and scared of the future may be - I want to have friends, relationships, a job and kids.
It's almost impossible to find people on social media, have you seen the MD Junction sub forums for NDPH? I'm guessing you probably have Already :) I'm happy to talk to any of my commenters if need be.
Gorgeous 🤷🏽♂️
Ik..ik..
Hi! I also have NDPH since the year 2000. Many many years. We will keep on fighting.
God bless i have the same thing and im just trying to live a good life. What keeps me happy is the hope that i can be helped later in my life. Again god bless and live good we have to work with what we got :)
Yeah I know, I soon will have had it longer then not have it. Thanks for the comment.
Hope you're doing well.
I was diagnosed today with NDPH, after having my brain and spine scanned for spinal fluid leaks. It started over 3 months ago (like you, I can remember the exact date). No idea what caused mine but I'm going to try everything I can from CBD to sugar free diets to try and stop this before it defines my whole life.
Hoping for the best for you mate, never give up hope
That's very decent of you, comments like this keep us all going :) I wish the same for you.
how is it now?
@@wahmodijiwah4201 Completely better actually man. Some studies suggest it can go away at any point, I seem to fall under that category as it went away after about 5/6ish months.
May be coincidence but it went away around the time I started a ketogenic diet. I did that diet for a solid 3 months before coming off it and I havent had symptoms since
@@NegativeEagIe glad you have cured it. was the pain high or mild?
I don’t have NDPH. But had tonsil stones hidden away where no one could see them for three years. I had this ear infection type pain that made sleeping so hard. As it felt like there was a weird pressure yet non pressure feeling in both ears constantly.I went to 6 ENTs. Tried lots of medication, ear drops, diet changes. Everything. And didn’t find out what it was until 3 weeks ago. When I dug and dug for these tonsil stones (because I knew it could be a possible cause but looked for them many times before). I finally found small ones on each side of my tonsil. And boom I was fixed. I was in shock. Because it was something so fixable and no one saw it. My life for those three years was terrible. Because I didn’t know what was wrong with me. Overtime more people thought “it was in my head” and I needed to get distracted. And overtime I started to believe that. Because stress would make my ears worse. I woke up to this weird feeling everyday that was debilitating. My day by day symptoms varied pretty greatly. And new things showing up here and there. Which could have just been me overthinking eveything
What I just want to say. Is keep tying to find out what you have (don’t overthink it thought) . People online may not be the smartest but don’t be discouraged by professionals (ik that sounds dumb) Don’t let anxiety and depression consume you, because it easily will. Stay strong.
I wish the best for you
-Don’t want to come off as. “Oh you’ll find a cure soon and all that” cause I know that gets old when suffering long term stuff
I just got my diagnosis lately, I had an aneurysm coilled in November 2021 woke next morning with headache, tingling over the body could not handle noise or light. Eventually I now have found out I have ndph triggered from the aneurysm. I'm trying to get information but can't see much in Ireland. My whole life has changed I'm feeling low in mood as well.
Your comment about deppresion/ anxiety is interesting .ive had every test you can imagine .its now obvious to me thar my gp and neurologist think my condition is pychosimatic ! I do now have anxiety, stress, deppresion but my permanant headache is 100% the cause of it.before this i was fine. 😤 ive even been sent to a councellor! 😢😤did not help at all .
Hi John, so late to comment :))
First of all I'm glad I'm not alone in this shit
My headaches started 7 years ago and suddenly with leech therapy it stopped completely! Then after 7 month it started to hurt me again after that i tried every doctor but one day some indian doctor gave me some fat burning pills!! And my headache gone for good! But the bad part is my neck is stiff and my scalp is numb and spasming! I really don't know what is the root cause but after so many researches i came to conclusion that it has might have many factors and it is what makes it impossible to cure becuse its complex situation right?
So try to fix bad factors in your body as many as you can
Seriously if you smoke or smth put it out or if your vitamin B12 is low try to fix it
Good luck
I relate to you so much I had a sinis infection had got lots of antibiotics and then 3/24/23 I got the most severe pain I've ever had and it's never went away I am not depressed person but this makes me wanna disappear
Look into tension myosotis syndrome and pain reprocessing theory. Im now cured so ignore at your own risk.
Yeah I've looked up Sarno's theories.
Do you feel lightheaded like you're going to pass out or black out?
Yes, but never a pass out feeling, I've never felt my knees buckle or anything of the sort.
I have NDPH too. I would like to know about treatment methods.
What do you take for pain ?
How are you today?
Have you found anything that makes you feel better or helps you live Better, I too feel like this agonizing pain has taken my life away I don't wanna live live this I wish there was a cure
Emgality injection once a month and Venaflexine daily.
I'm very tired. NDPH is hell on earth. You are alive, but you are dead at this time. Every day begins and ends with pain. Like Something eats your brain.
Perfectly said, purgatory, ahedonia alien feel.
Hey this is me for past 2.5years pretty strange because mine started with an ear infection&sinus infection.. I don't know where to go from here it's every second of everyday i can't hack the pain! 😢😢
Me too but I’m not sure what caused it
@@Queenn928 how long u had a headache for?
I'm coming up on my three year anniversary of my NDPH headache soon. I can relate to almost everything you said. I feel so empty and numb, but I am very depressed because of this condition. My headache started on January 5th of 2017. I was 16 and had just had a thyroidectomy because of papillary thyroid cancer. I just woke up with this headache that has never gone away for even 30 seconds. Along with NDPH, I now have other several chronic illnesses. My headache is is located in my entire head and behind my face. It's a very deep pressure on both sides, forehead, top of my head, and base of head and neck. I also have had jaw problems because i went to a week-long Police Explorer Academy that was very stressful in August of 2016. Within 2 weeks of coming home from the Academy, I started having terrible jaw pain that i still have today. I have tried over 30 different medications for my headache. The only medications that are able to help my headache are Tramadol, Excedrin, Fiorecet, and Mycratine. I have been seeing a CranialSacrial Therapist for the last several months which has been the most helpful therapy I have found so far.
I have also found Cranialsacral to the most helpful (Its something I only started recently), I'm here to talk anytime if you'd like. I take it from your surname, you're from the USA?
@@johnmcternan4157 yes. I live in Washington state.
John, do you have any tightness in the neck or pain? Have you tried regularly stretching your neck?
Sorry about my belated reply Jeff. I have done stretching, yoga, craniosacral therapy and an acupressure mat. I have some pressure, stiffness in the back of eye/in eye and in my throat of neck, crunchiness, a sort of pinching that moves all over the left side of head and neck. How about you?
@@johnmcternan4157 As I've mentioned, each time I've had NDPH, it was for a long time, and each time it seemed like my neck was involved in some way. Also, I was overworking at computers so it made a lot of sense, even though the actual event was triggered by an illness after long bouts of bad posture. I found that when I do really basic neck exercises or improve my posture, it starts to help. I know you've tried everything. But if I were you, I'd Google "neck stretches" and just do all of them every day forever, because why not. It takes like 5 minutes a day, and maybe it will help? You won't even have to leave the house or break a sweat. Best of luck. I hope you get better, bud.
@@johnmcternan4157pinching was when you moved your neck?
Have u been tested for a spontaneous csf leak by Duke University? If not please do so.
I haven't, well at least no neurologist has ever informed I have been. They take some spinal fluid, right?
Jostling John , get a MRI done with contrast of your brain and if you can of tour spine as well. better to get a new MRI dont use old one. Contact Duke or Stanford University CSF leak department. They will register you and ask you to mail in your CDS of the MRI. and she will explain the rest of the process. Here is the link for DUKE. radiology.duke.edu/patient-care/specialized-services/spinal-csf-leaks-2-2/#tab_scheduling-process
Jostling John omg omg... please look up Dr sarno and Mbs or tms. Please try research this and order his book.
Ndph since 99.
John can I ask how are you doing now ?
I don't get notifications for comments anymore and I don't know why but, I'm a little better Tabby. "a little", so still like death to put it bluntly. How are you?
@@johnmcternan4157 that’s sounds cat john . Listen I don’t know if it would help but have a look at the wim hoff stuff on here . It’s really helped me with a lot of issues I was having . Hope your on the road my man and god bless .
@@TabbyCallaghan Yeah I've been the torture showers (and all the other associated cold stuff) for a decade, it helps with mood for certain. Same to you.
Has anyone tried ketamine treatment?
Did u get an MRIs
Yes I’ve had 2 both which come out normal just tiny white hyperintensities which are “normal for people with headaches” did u heal from headaches
Yeah, nothing on them except what should be there.
@@johnmcternan4157 how long did it take you to heal
@@joseluistorres5785 Still the same.
Hey lad I'm based in Dublin have you tried aimovig yet?
You go to the Hermitage too? I haven't tried that drug, no.
Yeah with Martin 👍 are u trying anything new? I've had it 3 years
@@agilb1234 I'm supposed to be going in for Ennuemeal in a few weeks time, I've been waiting months already. There is something called "Compassionate Care" which will make it free. I go to Peter Goadsby in London every year or so as well. :)
Yeah mines balance related so can't make it goadsby yet... Whats ennuemeal?
@@agilb1234 Turns out its a different name for aimvog!
Does anyone else have one of their jaw joints clicking? I want to see if this is universal
Yes, that's one of the main areas for me. Very consistent too. The headache pain clicks/cracks where ever it is at, at any given moment. If it moves away from the jaw, opening my jaw doesn't cause a click.
What treatment options have you tried? I was diagnosed this 7 months ago and am trying things out. What has and hasn't helped
@@Saitama36987Emgality and Venaflexine have helped me.
I’ve been suffering from this headache for 7 years. I’ve been trying plenty of medication and it doesn’t work. 7 fucking years!!!!!!! I had the treatment in Ukraine, Israel, Russia, now I’m in the US . And they can’t help anyone .... What the fuck is going on!!!!!!!!!!?????((((((
Hello, did you find any relief?
@@aleksandrafrolova8684no
I made a tin foil hat. Shiny side out. Attached a long copper wire to it. Connected that wire to a cold water plumbing pipe. Wrapped the hat in 100% cotton pillowcase. Put it on. Wore it while watching TV. Slept in it. This has been three days. It stopped my headache. I am a chronic headache sufferer. I finally left my house tonight and went to the bingo hall under the led lights. After 45 minutes my headache came back and my limbs began to feel painful. I felt weak. Like I have been feeling for years. I didn't even want to stay and finish the bingo. I came home and put my hat back on. Already feeling better.
Here is a link on it but like I said mine I just grounded it to the cold water plumbing pipe
Hope this helps. Love ua-cam.com/video/jqBkJdExVxM/v-deo.html
I can't tell if joke or not but I got nothing to lose haha.