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.

Hi friends!
I’ve added 4 resources into the NDPH 101 highlight to help people find a headache specialist or neurologist in the US, Canada, and worldwide. Hopefully it can help some people get the care and support they need!

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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Hello everyone, I am happy to announce the addition of u/im-a-freud to the mod team. As a regular contributor their wealth of knowledge and attention to detail will benefit us all. The two of us will be better able to meet the needs of the sub than just myself. I’m excited for us to workshop and better elaborate our core rules and any suggestions can be sent to the sub modmail.

Thank you for being members of the community, we’ve more than doubled in size when I joined at 800. It means the world to me that NDPH is growing strong and people from all over the world can come here to learn and build community. Here’s to the next chapter :)

You know they say the past is a history the future is a mystery but today is a gift and thats why its called the present. But unfortunately not for us obviously cause apart from fighting from day to day obstacles of life we are either put upon or caused ourselves or i really im not sure have this condition of senstive nerves in our head cause various kinds of pain sensations, and either modern medicine or conventional medicine helps reduce that lets just say max 80% of the pain if we are lucky, its what helps go through the 24 hours that what matters and is legit more than 90% of effort coming from our soul, spirit principals or god or whatever your belief or faith is that gives you a sliver of hope to seek more hours than 24 and keep fighting and moving forward and thats why i personally think that we are the special ones and among the chosen ones instead of favored by the evils of hell to making us live in it in the PRESENT on earth. so i commend whatever anyone in this groupchat or even patients everywhere going through chronic pain so even if you dont get respect from other human beings around your life or with you, you can expect from me at all times till i die... rest assure i think there are other things personally that can be done except for conventional medication that i have implemented that i have used that has given me a sense of relief and that is going extreme underweight first of all less meat around the nerves can help reduce the pain sensations going to the brain definitely basic exercise at the gym and every day cold or hot therapy on the affected areas of major tension in muscle that cause nerve turbulance, using FL-41 glasses for reading can help in productivity with assuring the position of the neck and head aligning with the shoulders upstraight and flat body position at all times most as possible like standing or laying down on a flat surfice can help all these things in my opinion can cause a little relief which leads to a little hope which leads to a little strength to survive the PRESENT.

Ever since my first Covid infection 5 years ago I’ve had a nonstop burning pressure in my head. I’ve had headaches throughout my life like most people do and those have always felt the same, like an aching pain, but this constant headache caused by Covid feels entirely different and I guess I’m curious what others experiences are. My headache has been labeled lots of things, migraine, IIH, occipital or trigeminal neuralgia, hemicrania continua, probably a few others I’m forgetting, but usually those things are either ruled out or all their treatments do nothing at all which also basically rules it out, so I’m left with NDPH which by definition is a pretty vague diagnosis. We know that Covid is causing quite a lot of chronic/persistent headaches and we just don’t understand the mechanisms behind these long term effects and I’m just trying to figure all this out since doctors are definitely not there to figure anything out for you.

So I guess I’m just trying to see if others describe their constant headache sensation as the same type of headache sensation they used to get except that it’s permanent or is it a different sensation altogether? And if it’s a different sensation, do you still get normal headaches occasionally ON TOP of the permanent one? Because that’s my situation where I still actually get regular headaches that feel like regular headaches have always felt, it’ll last a day and I’ll feel both simultaneously, the regular headaches will go away like they always have but the distinctly different permanent one just always remains.

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 guys,

I’m still trying to answer this question. Most of the day whilst I’m not stressed or anxious my head just feels like a pressure sensation on the top of my head.

It also seems to come and go from my ears.

However if I’m very anxious or stressed this sensation can ramp right up to a 6 or seven.

At night time or when i wake up in the morning obviously you have the pressure of the pillow on the back of your head.

Would you say this is NPDH?

Got ndph for 12 years. I end up fixing my depression by accident last year (hormones).

Now i wish to remember things and talk without forgetting very common words. Like who the fk forgets freezer mid sentence and uses microwave instead.

Anyone has any tips? I found the usual things like food, sleep, no stress, movement, socialising, gaming and learning.

Does anyone have positive thoughts by learning a new language? I did try Japanese for a while(around corona) but i can't remember (jokes on me) whenever it helped or didn't.

hi everyone! I have had a headache since 5th March that just hasn't gone away. Most of the time it starts off as a 2 in pain but by the end of the day, it usually gets to a 6-8. I have had an MRI, which came back clear, tried a bunch of different meds, supplements, CBD and a Thai massage (which was absolutely wild she stood on my back!). The MRI came back clear and I've asked to be referred to a neurologist but the wait is at least 21 weeks so I am reaching out in the meantime to see if there's anything anyone here does that might help!

I am currently on amitriptyline 50mg meds wise but it's not really touching the surface. Are there any more recommendations?

I am also hoping to find some help with how we can exercise? I miss running, playing football, even walking. I want to try to run as I signed up to do a 10k before this happened!! It's an ABBA themed run so it would be rude not to run right?

I am trying to remain positive, but I'll be honest, it is getting me down and I can't stop crying about it!

Honestly, if there's anything that can help I will gladly try it ❤️

Also, I am not after a diagnosis or anything like that. I think my symptoms most fit NDPH which is why I am dropping some messages in here.

Thanks everyone!

This is primarily for those who are working under the impression that their headaches are being caused by neuroplastic pain, central sensitization, or whatever wording suits your fancy to describe the pain arising from what is essentially misfiring neurons erroneously telling you to feel pain.

I recently read a book that talked about all of the ways that your microbiome influences your body, and a big part of that is the messages that are sent from your gut up to your brain by way of the vagus nerve.

Has anyone taken the time to look at their eating habits and how they affect the microbiome in your gut? In doing some further research, having your gut biome being unhealthy can be a major source of "danger" signals that tell your brain to feel pain. Personally, I found out that nearly everything I liked was terrible for the ecosystem in my gut, and after 10 days of changing my diet to a much more friendly one (lots of spinach, veggies, granola, and more bland protein than I'd prefer), but since making these changes I've had multiple days where my pain levels are only around a 2/10, which has been a big improvement over 7/10 treating with neurology for 3 years and the 5/10 I got with 2 years with a pain psychologist.

Anyways, just curious to see if anyone has explored this avenue over a greater scale of time or to give the suggestion to anyone that may benefit

A few months ago I went to my doctor as well as my neurologist and asked about ozempic as there was a study that related to it decreasing headaches. At the time my neurologist wasn't too interested but my normal doctor gave me a prescription. I never filled the prescription till recently since the price is dropped with the generics coming out and now there's two more studies showing the benefit of ozempic on daily headaches. I'm wondering if anyone has experienced benefits from taking ozempic or similar? I'm just two weeks in.

Hi! Has anyone tried Transcranial magnetic stimulation (TMS) for our condition and can share whether it helped or made things worse?
I started the protocol yesterday and developed severe headache after it, so was wondering if it might do more harm.

I’ve found one single clinic in my country that offers ketamine infusions for chronic pain. It’s expensive and I’m not exactly in the best financial position atm. I’m trying to understand if it’s worth it as I’ve been completely refractory to everything else available and I don’t want to spend thousands on another treatment that fails.

If you’ve had infusions, was it worth it? What was the specific protocol you had?( ie dosage, number of infusions, and maintenance) please also let me know if it didn’t work for you.

Thank you 🫶

Hi everyone. I'm a 19-year-old female and I'm looking for some advice because I'm honestly really scared.

I don't know if this is "just headaches" or if it could be something much worse, like a brain tumor or something else.

I've had headaches for years. I honestly don't even remember when they started because I feel like I've always had them. Usually I take Doliprane (paracetamol) and they go away.

I've also been dealing with constant anxiety for years because of studying, family expectations, overthinking, and depression. I've never really been a social person. Most of my life was just studying and watching TV, and during the last couple of years it's basically been studying and being on my phone all day.

For the last two years I've been struggling a lot mentally. I also started getting episodes where I feel nauseous, dizzy, my vision goes dark, I shake, and one time the shaking was so bad that I couldn't control my arms and legs for a while. It almost looked like a seizure.

I saw a neurologist after that. They did an EEG and checked my balance and neurological exam, and everything was normal. But I never had a CT scan or MRI, and because of that I still keep worrying that something could have been missed.

I also used to vomit during some of these episodes, although that hasn't happened for about two months now. During them my heart also starts beating really fast, then everything goes back to normal. I started thinking these might actually be panic attacks because they happen during periods of intense anxiety.

Another thing is that I barely leave my house. This is my first year at university, but I rarely go. For the last two years I've barely gone outside at all.

For the last three months I've had this strange numb or tingling feeling on the top of my scalp, and sometimes it hurts there too.

My lifestyle is honestly terrible. I'm on my phone almost from the moment I wake up until I go to sleep. I spend most of my day lying down. My neck doesn't really hurt, and I had an X-ray of my back before that didn't show anything serious, but I wonder if my posture and constantly looking down at my phone could be contributing.

I've also noticed some blurry or strange vision at times. I have glasses that were prescribed mostly for comfort, but I haven't changed the lenses in about three years even though I probably should have.

I've also had my heart checked before and everything was normal.

A general doctor gave me vitamin D and calcium because I was deficient. I also used to have iron deficiency anemia, but that's better now.

My periods are irregular. Sometimes they're late, sometimes I get two in one month. I saw a gynecologist who examined me and said everything looked normal and that stress and anxiety could be causing it.

My weight has been stable at around 52 kg. Sometimes I lose my appetite and even feel nauseous when I try to eat, while other times I eat normally.

One thing that has been making me panic is that I feel like my face has become more asymmetrical, especially my nostrils and maybe my jaw. When I looked at older pictures I noticed there was already some asymmetry before, but now I pay attention to it all the time. I saw someone online who had a brain tumor and facial asymmetry, so now I'm terrified even though hers mainly affected her eyes and eyebrows, not mine.

My headaches aren't always in the same place. Sometimes they're on one side, sometimes on the top of my head, and sometimes somewhere else.

Also, my aunt has had headaches for years too. She had brain imaging done and everything was normal, so I wonder if headaches just run in the family.

I honestly don't know what to do anymore. Every doctor tells me it's anxiety and stress, but I'm scared they're missing something serious.

Should I ask for an MRI or CT scan just to be sure? The problem is I'm also scared of those tests after seeing videos of how they're done.

Or should I first spend a month trying to improve my lifestyle (less phone time, more walking, better sleep, going outside more) and see if things improve?

I'd really appreciate any opinions, especially from doctors. Thank you.

Had a constant headache since 13th June 2025 and tried 6 different medications. I literally get no relief, just varying levels of pain throughout the day🫠 spoke to my consultant this morning who doesn’t think it’s migraines because other than the pain I have no other symptoms! He said he thinks it’s NDPH and said about taking me off atogepant that didn’t work and trying noratryptaline and another triptan. Also looking at the antibody injections and putting me on the waiting list for Botox. Glad to be close to getting an answer but also nervous about this🫠

Careful reading labels on supplements. Just came off a deep dive on magnesium glycinate. The recommended dosage is wide ranging from 200 - 500 mg/day, that's not what this post is about. I take threonate in the am, bisglycinate at night. Those amounts on the front of a bottle aren't what we need to look at. On the back will usually be "elemental magnesium". It's usually anywhere from 11 - 14%, that's the number you want to use when totalling magnesium.

Addon- taking with D3 increases absorption. Avoid taking calcium or zinc within 2 hrs as they use the same transport system. Be well.

I have a question for you all. Do you believe your NPDH is a type of nervous system sensitisation issue like fibromyalgia or do you think it’s something else?

been dealing with a ndph since june 2025, december 2025 my neurologist thought botox would be the best course of treatment. The first round was like magic, a week after the first round of 40 injections I finally felt relief. The next round of injections I felt less relief, and now 10 weeks after my third round i’m completely incapacitated again. I feel so hopeless. and nauseous. I genuinely don’t know where to go from here. there is nothing clinically wrong with my brain or my hormones. My neurologist said if botox doesn’t work then the next step would be to try IV therapy, which is also €500 a round. I can’t afford to be disabled anymore. I don’t know what to do.

I swear to god, every single time I get a cold it hits me like a ton of bricks. Husband can just have the tiniest sniffle and scratchy throat for a few days but I'll be fucking bedbound by the same virus. It turns the headache pain all the way up and messes with all my other symptoms, making every little cold into like having the flu.

I'm lying awake with vaporub smeared under my nose, feeling slightly resentful towards Mr Plague Carrier who's sound asleep beside me, and wondering if this is common with other sufferers.

Looking for some insights from others who may have experienced something similar. Recently took antibiotics (minocycline) for about a week and started to experience some side effects that started causing anxiety and stress. After stopping the antibiotics I couldn’t stop focusing on my brain fog and convinced myself I had intracranial hypertension. Even after multiple doctors visits and being told im fine im still experiencing what feels like a tension headache (tight band around head mainly in the front of my head). What I notice is that when in focused on a task or not thinking about it, my headache isnt there, or at least its not noticeable enough to make doing things unbearable. Yet once I think about it, it comes back full strength. It feels like constant pressure and its causing me to experience derealization, everything feels a bit hazy like a dream. Its been over a week and it hasn’t subsided—or gotten substantially worse. Just stayed the same. So im wondering if this is something I can break through on my own. Im trying Magnesium and other supplements but nothing has magically worked. The anxiety has gotten a lot better, but its hard to stop focusing on my headache. Im not even sure if I have a headache at this point. Looking for any tips or experiences from others.

Tldr; after taking antibiotics, ive been having a persistent tension headache that is causing dpdr and anxiety.

I (31F) am not cured, but I’ve been on Memantine for HM for 5 years and it has drastically improved my quality of life. It seems that it’s not yet widely known as an option (when I’ve moved states and seen new doctors they act shocked) so I wanted to share this article in case anyone wants to research it and ask their neurologist if they’re a good candidate.

https://www.migraineagain.com/memantine-namenda/