I don’t know what to say, my minds full of thoughts and rants but I can’t bring myself to write them down as I still have this small hope inside me that it stops and it was never NDPH perhaps.
I can’t study, go out, work or do anything like before and I feel utterly useless to myself and others. I can no longer do activities like I used to do.
What are things that help your quality of life? What do you take?
I’ve had chronic nausea and cyclical vomiting syndrome with my migraine for a long time. However, I cannot find an antiemetic that touches my nausea at all even Ondansetron does nothing.
Hello everyone usually I don't use reddit that much but I came here for finding some solution or relatable situation if someone had......
so basically I have headaches(I have throbbing pain of intensity 2.5/10 in temples area mostly) from past 3 years and it's not normal headache it remains throughout the day like when my eyes are open I have headache
I started around April 2023 like out of no where I got headache, when I was in 2nd sem of my B.tech and till now I have this, i have tried allopathy for 2.5 years, did mri, eye scan, fixed sleep,left food for 18 days , ent test, so many experiments with food like left dairy products, rice, boiled food and many more but I'm not able to find my root cause or triggering point of it.
I have also tried ayurveda, homeopathy but no results.
Now a days I'm following siddha philosophy medicines in chennai ,tamil nadu ,india.
So please help me to find out my triggering point or give me some new prospectives to look upon this.
Hi everyone!
While changing some things with this sub I found some great resources for all things NDPH that I couldn’t fit in the resource tab so I wanted to post them here to help people out. I lost access to the previous account this was posted from and I want to be able to add more as I find them so apologies for the repeat post. If there’s any resources you’d like me to look into let me know! I’ll update this periodically as I find more resources
Resources to Understand NDPH better:
NDPH.org
NDPHaware
NDPH Research Publications
Finding a Doctor:
United States
Canada
Worldwide
- headache.org
- medifind
Crisis Support 24/7:
- Suicide Crisis Helpline call or text 9-8-8
- Kids Help Phone (all ages worldwide) call 1-800-668-6868 or text CONNECT to 686868. They have a lot of resources on their website, as a previous crisis responder with them I highly recommend reaching out if you have a crisis or just need someone to speak to
i’ve had my headache for 2.5 months so my headache specialist is still between status migraine and ndph, for those of you who have suffered with this for years, forgive me for this rant and know that i understand you have dealt with this for much longer.
my headache started only 2 weeks after i finally closed the distance with my bf and moved to his state right after i finished nursing school. i was in an accelerated program that i started a week after finishing undergrad. i worked part time throughout all of my schooling more than i should have to afford it, i was first generation. i worked SO hard. too hard which is part of what i think caused my headache. before my 5 years of pushing to get where i am today, i grew up in an abusive household and i got out by a hair through my own strength. i also suffered debilitating ocd that i worked so hard to make bearable. i have worked my entire life to enjoy my life and i finally got to where i’ve been waiting for and i only got to enjoy it for TWO weeks.
now, i am in pain 24/7, cannot think about anything else, had to push back the start date of my dream job as a night shift l&d nurse which im now not sure if ill be able to do/how i will pay my loans back if not, my boyfriend is truly struggling with supporting me and watching me suffer and it is weighing on him heavily and im so scared i am gonna become too much for him to handle. i don’t know what to do anymore. everyone around me is telling me im going to get better soon because ‘i have to’. it doesn’t make any sense to me. i don’t think they can accept the reality that this headache and light and noise sensitivity might last a very long time. i am the only one trying to accept it and live how i can. i feel so exhausted and isolated. all of this while in constant pain and trying to push myself to do a little more every day to expose myself to the pain so it doesn’t stop my life. i’m so tired. i just want it to get better.
My headache started May 8th - came out of nowhere. I had never had anything like it before. Tried to sleep it off and push through it, but it got worse and worse. Went to the ER on day 4 due to the pain - they tried toradol and did some scans to rule out tumor/aneurysm/stroke.
Since then, it's been 3+ months of continuous headache. The headache is locked on the left side of my head, towards the front. It has never switched sides. I have severe sound sensitivity. Motorcycles going by ramps my headache up significantly. I haven't had aura or nausea, and thank goodness I've been able to sleep ok during this horrible time. I've tried to get back to work, but my headache gets out of control if I'm in too many meetings.
Baseline pain in May/June was 6-8/10. I started intranasal ketamine end of June, and that brought my baseline down significantly. My headache went down to a ~2/10 baseline for a few weeks, but since then it has ramped back up. I still have not broken the headache cycle at all since May.
My headache specialist has been treating this as status migrainosus or NDPH. Treatment seems to be pretty much the same regardless of what it is. I did get a head/neck/shoulder massage today and it was extremely painful, so wondering if there is some sort of musculoskeletal tension that is contributing to this as well...
Meds I'm on:
Meds I've tried
Interventions I've tried
For those who have been fighting NDPH for years — does this onset/course sound similar to yours? What treatments actually moved the needle for you, and did anything ultimately break the continuous headache?
Things I'm currently considering:
Would especially love to hear from anyone who went from a truly continuous 24/7 headache back to having headache-free days.
Hi everyone,
I have migraine/tension-type headaches, and I’ve noticed two things that I’m trying to understand.
First: cold air.
Whenever I’m exposed to strong AC or very cold air for some time, I sometimes develop a headache or my existing headache gets worse. I’m not talking about eye irritation or dry eyes here — I mean the headache itself.
Does anyone else with migraine experience this?
Is cold air/AC one of your migraine triggers?
Second: concentration/reading.
I also have a strange problem with concentration. When I try to study, read a book, watch something carefully, or concentrate on something for a long time, I can start developing a headache.
If I already have a headache and I force myself to read or use my phone/computer, the pain can become significantly worse. Then my ability to concentrate becomes even worse.
I also experience photophobia (light sensitivity) and phonophobia (sound sensitivity).
So I'm wondering:
Does concentrating/reading trigger headaches for anyone else?
Can migraine itself make it difficult to focus?
Do you experience headaches from computer work or studying?
Does cold AC/cold wind trigger your migraine?
What has helped you personally?
Have you been able to work/study normally despite these symptoms?
I'm especially interested in hearing from people who have screen-heavy jobs or study for several hours a day. I'm hoping to eventually study in Japan and work in IT, so I'm worried about whether I'll be able to handle a computer-based career with these symptoms.
I'm not looking for a diagnosis—I'd mainly like to hear about other people's experiences and what helped them.
Thanks ❤️
hi everyone, i hope you are having a low pain day today 💓
i am only 2.5 months into my headache, so my headache specialist is still unsure whether this is status migrainosus or ndph, but i have failed many of the traditional migraine remedies and botox is the next step in september. i have been living my life on pause because of the pain and waiting for it to go away, but i am supposed to return to work in october and i am becoming extremely depressed by staying at home all day.
so i was wondering, are you all able to distract from your pain? i have been struggling to not think about it even for a few seconds. it has been on my mind non stop since it has started. it certainly doesn’t help that i have ocd and therefore obsess over topics but i truly find it so hard not to think about the physical pain that is there. i have been reading ‘the way out’ to try to do pain reprocessing therapy but it doesn’t really discuss this issue and i figure thinking about it nonstop is certainly making it worse. i also am wondering what keeps you going? i don’t mean to offend anyone at all but im sure you guys have had these thoughts.. but sometimes i wonder what the point is if i am going to be in this pain for a long long time.. what am i working towards? why bother trying to build my tolerance for things when i feel i haven’t experienced true joy since this started? right now i feel i am living for my family and my bf but i need to live for myself.
thanks for listening, i wish you all the absolute best in life 💐🩷
I was wondering if anyone has gone the pain management route and if you had any relief from anything they offered? I’ve been with a neurologist (headache specialist) for years and have tried a lot of medications that don’t work. My head pain is severe 24/7. I have had brain surgery so I do think I have a complicated case. Thanks for any input you may have!
Hi everyone. I’ve been having these kinda very mild pressure headaches for about 3-4 months now. Got an MRI and bloodwork and nothing came up so I know it’s nothing major but they are so frustrating and I just wanna get rid of them. Tylenol helps, but obviously don’t wanna take it every day. I thought the first day I’d taken Sudafed it seemed like it went away completely but the other 2 days they were there and it was there after taking it. I’ve been taking Allegra and Flonase pretty much the whole time cause Dr said my sinus was stuffed up and MRI showed mucosal thickening. If you have any advice please send! Thanks!
The heatwave in the UK is really doing a number on my girlfriend's head, we're trying to help her stay as cool as we can but it's very difficult with where she is.
She doesn't have much to work with, her fan isn't doing very much and she can find it hard to sit still so something like a flannel on the wrist or foot doesnt work too well massively.
Does anyone have any ideas as to something we could get her to help keep her cool? Anything like gadgets from amazon or easily accessible methods to keep her cool, thanks everyone.
(I understand this isnt necessarily talking about NDPH but she has it and I thought seeing what other people have would be a good place to find stuff.)
I’m 21F and wanted to share my experience with NDPH and see if anyone has had a similar course or eventually reached remission.
For about 1.5–2 years, I had pretty significant iron deficiency/anemia symptoms (fatigue, weakness, low energy, and all that) that I honestly wasn’t taking seriously enough. By December 2025, everything caught up with me. my hemoglobin was 8.9 and ferritin was 2. I started having episodes of feeling faint, nausea, weakness, and just generally feeling horrible.
I received an iron infusion in December and unfortunately had a severe allergic/anaphylactic reaction to it. My blood pressure dropped, I developed a widespread rash/inflammation, and a Code Blue was called. My body felt extremely sensitive/reactive for a while afterward.
Then, around mid-January 2026, I suddenly developed a headache that never went away. I had basically no migraine history before this. It started as constant head pressure with severe eye/light/sound sensitivity, scalp sensitivity, nausea, and an inability to tolerate screens, TV, my prescription glasses, driving, or much stimulation at all.
Over the following months, I had multiple ER visits and tried steroid tapers, Nurtec, naratriptan, nortriptyline, an occipital nerve block, and eventually Ajovy. Nothing completely broke the headache, although thankfully the intensity has gradually improved. At my worst I was around 8–9/10 and essentially nonfunctional; now my baseline is usually around 4/10 with occasional flares. I still have significant eye/scalp sensitivity and can’t tolerate my glasses or drive normally yet.
My iron deficiency also continued despite my hemoglobin normalizing, so in June I finally received a full 1,000 mg INFeD infusion, which thankfully went well. I’m getting my iron levels rechecked soon.
I recently saw a headache specialist who diagnosed me with NDPH. I’m currently on Ajovy, Nurtec, nortriptyline, and I’m in the middle of a 15-day valproic acid course specifically to try to break the continuous headache. If that doesn’t work, the next plan is a 5-day DHE infusion, and potentially other options afterward.
I’m definitely better than I was months ago, but the headache has now been continuous for about 7 months and I’m still trying to get back to my normal life.
Has anyone here had NDPH that gradually improved like this and eventually completely broke/remitted?? I’d especially love to hear from anyone who eventually got back to a pain-free baseline.
Hi everyone,
I'm a 25-something guy from Nepal, currently living in Bangalore, India. I've had migraine with photophobia (light sensitivity) and phonophobia (sound sensitivity) since I was 13-14 years old. Even as a kid, when I was stressed or overthinking, normal noises would start hurting my head and I'd hear a humming sound in my ears. School was tough because group chatter and classroom noise triggered it.
I grew up poor, dad wasn't supportive, and I faced a lot of bullying because I couldn't afford good clothes or books. That made my overthinking worse and the noise sensitivity got deeply rooted. Now as an adult, I'm on Amitriptyline 25mg prescribed by a neurologist. It's helping slowly, but I'm far from fully functional in a normal workplace.
Right now, the only job I can manage is food delivery in SWISH (from same store). I do 10-minute deliveries on a bike, 3.5 km radius. The problem: waiting at restaurants, the exhaust sound of the kitchen is incredibly loud. I use Honeywell Bilsom 304L foam earplugs to survive there, but I can't wear them while riding (safety). The phone screen brightness for the delivery app also triggers photophobia after a while.
Because of the migraine and sensitivity, I can't do an office job — the screen and open floor noise would break me within a day. I feel trapped. I have a wife, and I'm the only earning member. I'm trying to keep myself calm with meditation, yoga, and morning exercise, but I'm scared about my future.
Have any of you managed a delivery job or any noisy outdoor job with severe phonophobia and photophobia? What practical adjustments did you make? Are there better earplugs that reduce noise but let you hear traffic? How do you handle bright phone screens under sunlight?
Please share your real experiences, not motivational quotes. I need ground-level advice.
Thank you.
i want to get full implants on my teeth but im like.. EXTREMLY worried that it would cause my NDPH to worsen. everytime i go to the dentist i get horrible horrible headache after. im just worried it would be the case with implants and the pain just wont go away. did anyone expreince this?
NDPH really tears apart my girlfriend, which really breaks my heart, so much so I just wish I could take it away from her.
I just want to find ways to help minimise pain. I have something special planned for her (can't say what because she follows my account), and I want to do what I can to help her minimise the pain.
Does anybody know anything that may've helped them? Even if it's just a tiny bit, so I can make that day a little more special for her and a little more stress free, thanks.
(Sorry if this post is a lil awkward, never really asked for advice for someone else like this)
I have had NDPH since 2023. I recently moved to TX and previously my neuros had just been trying different things to kinda see what sticks, but the neuro who initially diagnosed me didn't really know much about NDPH or what to do with me as a patient and I am trying to avoid more of that. I am willing to drive for someone who is good and knowledgable.
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I know there is a solution to this. Why cant I just take a probiotic or something.
I am willing to leave the country to seek treatment if anybody knows any solutions.
My doctors are still treating it like a migraine and I’m pretty sure it’s not.
My neurologist asked me “how often” I’m getting headaches at my last appointment which I think was the fourth with her. Once again I had to remind her “all day, every day, since Jan 8”.
Hi everyone!
While changing some things with this sub I found this great resource for all things NDPH that I added to the resource tab but wanted to post it here in case anyone wasn’t aware of our resource tab. The website is NDPH.org.
- It breaks down what NDPH is, what can cause it, different avenues for self care that may help reduce symptoms or over all wellbeing while you trial treatments (a foundation if you will)
- supplements with their effectiveness, doses and how they work
- nutrition
- upper cervical exercises with instructions for improving posture and strengthening
- mind-nervous system exercises
- questions to ask your specialist or doctor
I wanted to put this out there along with the medication list from NDPHaware in case anyone needed the resources but wasn’t sure where to look. I hope this can help guide people in the direction of relief and hope. Should I find anymore websites that I think are beneficial I will add them below :)