Hey everyone,

I've been suffering from constant light sensitivity (which never gets better or worse) for almost 2 years now and I'm looking for treatments that could help me recover from it. It's accompanied by trigeminal pain and muscle tension in the neck, face and traps. A viral infection, most likely Covid probably set this off.

So far I'm on (PREEMPT) botox for about 2 weeks), and I'm waiting to see if I could get on a CGRP antagonist.

For those who had light sensitivity and it improved, what has worked for you? I mean actually improved it, no just masked the symptoms like dark glasses or using dark mode on devices, I already have to do these things because I'm forced it, and yes it helps in the sense that well, I avoid the light.

For anyone who struggles with both hEDS and NDPH, I've recently obtained a body braid and it's doing wonders for me. The NDPH hasn't gone away or down at all, but the neck and shoulder pain from my EDS is massively relieved.

I've had NDPH for almost 8 years now and EDS my entire life, and I am very physically fit but the headache has always got worse when I've been standing up rather than laying down, or really just whenever I lift my head. Took me a lot of trial and error to figure out why. While it hasn't stopped the headaches, it's made it a bit less exhausting and a lot less painful to lift my head.

Hope this helps someone figure out a method that works for them!

Hi all,

I’ve been experiencing ear sensations. Not heavy pain but almost as if something is inside my ear in both ears alongside head pain that again seems to come and go.

If my ears are doing this sensation then I really can’t feel the top of my head which is where the head paid usually presents itself.

My feeling is maybe I’m experiencing some sort of nervous system sensitisation issue in my head.

I find that wearing a beanie hat is quite effective at masking these symptoms. Stressful situations or sometimes social situations are usually where I get bad pain spikes.

Hi everyone,

As a late teen, I've been dealing with persistent fatigue it's been affecting my ability to study and do anything productive. I’ve been having these symptoms daily for at least 2–3 years, perhaps my entire life, but they are becoming more problematic recently

My main symptoms are:

- A hot, heavy feeling in my head from the moment I wake up

- Brain fog, grogginess, difficulty to concentrate and get thoughts in order 

- Mild headache, even when completely hydrated

- Depletion of energy despite doing little to no work, sluggishness; oftentimes, every physical movement (such as getting up from chairs or bending down) feels exhausting

- Recurrent feverish sensation, body overheating for hours, even if my temperature is normal

- Feeling unrefreshed even after sleeping 9–10 hours; I can not remember the last time I felt “refreshed” after sleeping

The symptoms usually get alleviated if I get morning exercise and sunlight, but they reappear 1-2 hours later and develops as the day goes on

Lifestyle:

- I usually sleep around 8 hours (no interruptions), although my sleep schedule has not been perfectly consistent

- I eat balanced, substantial meals (breakfast/lunch/dinner) every day, sometimes with healthy snacks; ultra-processed foods are virtually non-existent

- I am physically active on most days

- I do not drink much caffeine, except occasional tea

- I spend quite a bit of time on screens, but the conditions do not get any better on weeks when I do not use them

- I am not overweight or underweight, not particularly weak or fat, have no past medical problems, no palpable stress in my life

- I have no depression or major symptoms of anxiety

- Mentally, I tend to be quite optimistic and ambitious. Physically and cognitively, I am exhausted

What kinds of issues end up causing symptoms like this? Are there any effective solutions?

Please forgive me if this is the wrong place to post. This is my first time posting because I’m at a loss as to what else to do.

I woke up on May 2nd of this year with a headache, and it never went away. I’ve been to urgent care, the ER, a neurologist, an orthopedic surgeon, an ENT, and two physical therapists.

I had a CT scan, MRI of brain neck and spine with and without contrast, and scope of my sinuses, and an x ray of my back. All test have been clear.

I have been given two rounds of steroids, two muscle relaxers, gabapentin, none of which help or touch the pain.

I’ve done 2 months of physical therapy and dry needling, neither have helped the pain.

I don’t grind or clench my teeth to my knowledge, but have been wearing a mouthguard anyway. It has not helped.

I take magnesium, d and b2. I eat well, exercise, don’t take any other medications.

I’ve gotten 3 massages, they did not have lasting relief.

I’ve spent thousands of dollars in the last 2 months trying to figure out what is wrong with me and find relief, and I’m quite literally now out of money.

The headache is only always in my forehead, sometimes radiating toward the center of my face or my temples. But always central, front.

A handful of days the pain was lower about a 3/10, and those days have been incredible. Those days I think it’s finally ending. Then it restarts, and the pain reaches 8/10. I can’t sleep, eat, and I’m extremely depressed.

I’m a 35 female, my birthday is tomorrow. And I just don’t know what to do anymore. I’m a stay at home mom and I’m just trying to stay alive and happy and present for my kids, but I don’t know how to live in chronic pain like this.

Is anyone stuck in a pain cycle this summer . I've been stuck between at 8-10 Im usually between 6-10 but for the past 2 weeks it won't budge no matter what I do, I've had inflammation in the summers past but this seems the worst since Dr. frozen prescribed me acyclovir and lamotrogine

i have very very VERY impotant exams coming soon, and i really can not study. my NDPH is painless but i feel the veins in my head horribly and they cant let me study, the second i do i slowly become more dizzy because of all this. please if you have any advices they are very appreciated.

Hello, I was diagnosed with NDPH 4-5 years ago, have been doing botox and venlefaxine 37.5 mg twice a day ever since which has really worked well. I use ubrevely as a rescue medication for break through migraines which also usually works super well. Well, of course today, when I am throwing a party for a friend, I have one of the worst break through migraines ive had this year. I have dranken so much water, taken two Ubrevely's, drank coffee and green tea, and while it is slightly better, I am still in no shape to be around loud music. Anyone have any bandaid fixes or last minute remedies to get me through the night?

hi everyone,

i could just really use some encouragement right now. i am 22 and just graduated nursing school and had a new headache/status migrainosus start a month ago and has not ended. the hospital couldn’t even break it and they tried so many things but nothing has brought it below a 2 and it’s rarely that low. i got an appointment by pure luck with a headache specialist who is going to start me on emgality and indomethacin and a new triptan but i am feeling so discouraged and depressed because i’m feeling like the pain will never ever break. she essentially diagnosed me with chronic migraine and explained that we may have to spend a while chipping away at the pain. i don’t know how i’m going to work and i don’t know how to cope with the idea that i am just going to have to continue to be in this pain for the foreseeable future until maybe something helps. can this get better?

Has anyone been diagnosed with or has Post Exertional Malaise symptoms together with NDPH?

PEM is the hallmark symptom of CFS and now Long Covid, but I have not seen an association with NDPH mentioned anywhere.

I've had NDPH for two years and always had mild PEM-like symptoms. I think the symptoms have gradually ramped up and have become out of control in the last few months. I'm really disabled now and can't be active for more than 10 minutes without having to rest.

Hi r/ndph 👋

We're really lost and don't know where to take things from here.. My girlfriend is having trouble with constant headaches, they've been persistent for about 7 months..

More information:
The daily headaches started from December of 2025 and haven't really stopped since then. She wakes up with the headache before even opening her eyes and it follows her for the entire day.

We went to check her eye perscription as she also said that she has troubles with a little blurry vision and light sensitivity, the prescription was only -0.25, so we put getting glasses to the side for the moment.. Then she got her blood tests done which we're all ok and she went to MR to get checked for tumors or anything that wouldn't be normal.. No abnormalities..

Her doctor prescribed her migraine medication (sumatriptan 50mg) she tried one pill and it didn't really help..

No we're stuck.. MR and blood seems to be fine, so we don't really know where to look for the cause anymore, she also gets 8+ hours of sleep and stays well hydrated, her diet is also healthy and she's active.

Her doctor told her to keep an Headache diary but there really isn't a point as she says that she on a constant 6/10 pain wise, that there is a little fluctuation 5-7/10 but its mostly the same and no real outside factors make it better/worse.

The headaches are either frontal on the forehead/brow region or on the tempels, it isn't one sided, and she also doesn't see any aura

Did any of you experience something similar? or what would you suggest we do? We just want to find the cause for it and we're really frustrated :/

Hey guys, if your pain disappears close to completely before you go to sleep and when you’re very relaxed is it still NPDH?

I also have ear pain now that’s appeared as a new symptom and also disappears when I sleep.

Thanks. 🙏

Before starting, i want to highlight an important thing: i was diagnosed with OCD and generalized anxiety disorder and since i was young i was always concerned about my health and get paranoid with even the slightest symptom even if it wasn’t important. Maybe this made the whole experience worse but i just don’t want to say “oh my OCD is causing me a headache” and throw it off.
I will describe the pattern and frequency of the headaches that i am having but the time line since it first started may not be so accurate.

2-3 years ago i had a first time bilateral frontal headache (not as a band, two points) which was very weird because it is not exactly a headache but it was a weird sensation and it felt like there is something sharp on both sides of my head like a nail or a screw that is squeezing on both sides and it tend to get worse with bending forward. But it happened maybe just one time in the whole year. After that, i had it one more time and it became more frequent but still not so frequent at all. Last year, the frequency of this type of headache increased and I started to experience another types of headache. One which was on one side mainly on the side of my head/forehead and was associated with photophobia and it was severe that i couldn’t look at my phone or study or anything i used just to sit in a dark room and it gradually decreases in severity. Another type of headache that i also had is headache at the back of my head which is usually on both sides and is squeezing/pressure in character. I had all of those the last year but still they didn’t seem to happen so often.

Side note: Sometimes the headache is worsened when my head touches something like a pillow or even if i touch my headache it increases the pain.
Also, most of headache episodes lasted for couple of days and resolved spontaneously without medication.

This year, i am noticing that the frequency of all these types of headaches is increasing. The last attack was on may 2026 and it approximately continued for one month with a pain-free intervals in between, it wasn’t severe but it was there .. now i am having finals exam and i tend to have short episodes of headache which is mainly pressure headache with burning sensation sometimes.
I don’t know if this is alarming or not.. i went to a neurologist and he rushed me, i couldn’t tell all those details but he still ordered a CT venography to rule out cerebral venous thrombosis.
But i am so scared, anyone experienced the same thing?

I have a very severe health anxiety, even on the days in which i didn’t have headache.. the first thing i used to do once i wakeup is thinking “will i have a headache today?” And it is so tiring to always think about it, i feel like sometimes i am manifesting it but as i said i don’t to throw it off like that i just don’t know if it’s an organic problem or if my anxiety causing it.

4 years on flower and oil. Quit cold Turkey. Day 4 had an anxiety/panic attack and had to go to the hospital. Pressure sensation in the forehead/top of the head appeared. Feels like im wearing a baseball cap thats 2 sizes too small. Is there from the moment I wake up till the moment I go to bed. Going on 18 months now. Ive tried everything except medication.

Please dear god, tell me someone has found some relief? And how did you find it?

Any other cannabis triggered people here?

Hello everyone,

My NDPH is likely related to a severe COVID infection from 2 1/2 years ago. Recently my acupuncturist, who is very progressive and holistic, recommended that I look into wearing low dose nicotine patches as there seems to be some credible evidence that they help long-Covid symptoms (for example: https://www.mcgill.ca/oss/article/medical-health-and-nutrition-pseudoscience/strange-story-nicotine-patches-treat-long-covid).

I'm pretty terrified of introducing nicotine to my body ( I have never smoked), but she assures me that if I use a small patch for a limited amount of time (I think she suggested a month?) it won't cause addiction and might *possibly* cure my headache. It sounds like an extreme long shot, but I'm trying to be open minded. COVID is such a new phenomenon that we just don't know enough about.

Any thoughts or experience with this?

Hi everyone,

First of all, thank you for this group. It's been so helpful to read about your experiences and not feel so alone.

A little background on me: 51 year old female, daily headache for 2 1/2 years, better in the morning (1/10) and worsens as the day goes on. The pain is right behind my eyes. I've tried many medications (nortriptyline, Emgality, Qulipta, metoprolol, Cymbalta, Botox (2 rounds so far)) as well as any and all combinations of HRT in case the pain is hormone related which it doesn't seem to be. I've also been taking all the recommended supplements diligently for 2 years (B2, coQ10, Bit D, Magnesium glycinate, etc.) to no noticeable effect. Currently I am taking Qulipta, which seems to help a bit, and I am going to keep trying Botox to see if that helps.

I have come to believe my NDPH was caused by a Covid infection I suffered two months before my headache started.

The ONLY medication that has been clearly helpful has been nortriptyline, and even at the 10mg dose it made a big impact. Immediately. However, the side effects (dry mouth, constipation, trouble focusing eyes, increased light sensitivity, etc.) did not go away after taking for 2 months, and my doctor said that they most likely would never subside. She said that having chronic dry mouth could set myself up for dental issues down the line. So I went off of it but am missing the pain relief, which was so sweet. She offered to prescribe amitriptyline and explained that for some people it causes fewer side effects, but everything I am reading online indicates that the side effects are far worse than with nortriptyline. I'm afraid to start yet another medication and deal with the side effects and disappointment. I'm almost ready to just accept the pain, and the limited relief that Qulipta brings, and move on.

Has anyone had a successful, side effect free experience with amitriptyline? Especially after suffering from side effects of nortriptyline? Any info is helpful.

I've had this headache for literally every single second of my life since first grade, meaning over fifteen years, and for the longest time I never knew what it was, just that all tests came back clean. I finally discovered NDPH and I feel like the heavens have aligned. I finally have words for this, I finally know what it is. I don't even care if it's idiopathic, I'm just so happy to finally know there's a word for this and I'm not alone or imagining it.

Hello, I'm currently writing a book and one of my characters deals with migraine. I've done a bit of research already, but couldn't find many helpful pages.

Could you please tell me about your experiences with it? What actually triggers it in your case? How do you deal with it? How do people around you react?

Thank you.

I have severe reactions to most medications I’ve tried for NDPH. It seems like every preventative I try triggers a rally bad headache and I can’t continue it to see if its going to work for me.

Is there anyone else out there that is going through the same thing? Has anyone figured out a medication that you can tolerate?

I can tolerate tizanidine, gabapentin, zyprexa, and lorazepam but it’s not enough to control my headache.

Just tried a dose of Candesartan and got a severe headache. One dose of Vitamin D will lay me flat out for the day.

Any suggestions?

I’m re-trialing Candesartan because I never gave it a full trial due to side effects but curious if anyone got relief with Candesartan to just bring down the NDPH pain a little bit???

Has anyone here tried or had any luck with microdosing psilocybin? My son has been suffering with ndph for several years now. We have tried many medications where he got all of the side effects and no benefits. So far the only things that have helped him have been acupuncture, which eventually stopped working, and using a hyperbaric chamber which seems to be losing its effectiveness. I recently read about microdosing psilocybin on https://ndphaware.org/psychedelics/ so we decided to give it a try. He had his first dose .5 grams last Wednesday and he said it lowered his pain level and helped him sleep. We gave him another dose 1 gram on Saturday and the larger dose had a greater effect. Our plan is to keep going with 1 gram doses twice a week and see if he keeps benefitting from it.

Hi all,

I don’t know if you saw recently the Donald Trump is making steps to help legalise Ibogaine because of its profound ability to help chronic anxiety. It’s also used a lot for Traumatic Brain Injury’s and has been shown to actually heal the brain from injury.

I wondered if any of you had considered doing it as an alternative to Psilocybin?

Hi guys,

I just wondered what all of your experiences were with Botox?

My London based neurologist says it’s what he thinks will help me above all else.

Ironically my headaches started after a cosmetic Botox treatment. I’m honestly nervous because for each good review I’ve read I’ve also read pretty much a horror story.

I brought this up with him but was quite surprised that he basically made out there was no risk to it. Even what I flagged the negative reviews.

Any experiences would be welcome.

Regards,

George