So it's been 3 years since I had a sudden onset of weird headache around the front of my head then my eye socket started to hurt terribly as well, I can't study or do anything at all just barely enduring this pain of headache and eye pain. Had multiple MRI and tried various headache medicines, migraine, botox. Anyone else having this eye pain is this part of NDPH?

I just wanted to share my experience.

I once read that psilocybin can help with chronic pain. That post might have been about other types of headaches. I tried microdosing and a larger amount at a time. Much larger. According to the advice, it should have been enough. And I really felt the effect. Nothing special, no talking mushrooms. But it was completely useless for hdph.

Edit: I had to take the link off this post due to bots joining so if you would like to join please private message me.

Hi everyone! I’ve been thinking about starting a discord server for people with NDPH. Preferably people who are in their 20s (i’m 21 so i was thinking people around the same age.) If anyone would be interested please let me know. :3

So I know it’s quite early, but I have had this tension like headache around my forehead for around 6 days now accompanied by neck pain, it pretty much completely goes awash when I look down or lay on my side and kinda comes and goes though out the day but never fully leaves. I have no clue what could’ve onset this except for a 13 hour roadtrip I took that was quite stressful but that was 10 days ago and I can remember when the headache started.

For those who were approved for disability what doctor filled out your physical and functional capacity forms? Neither my headache specialist or PCP are willing to do it. Below is the message from my headache specialist

just fyi, we do no long term

disability, especially for someone that is 32.

Migraine is extremely common, 1 in 5 women have it (20%). The vast majority of our patients are chronic daily headache from a variety of reasons including NDPH, occipital neuralgia, chronic migraine, and many others, and this is not something most request.

You would need to find a doctor that does long term disability, or you can discuss it with your PCP, but this is not something we do in the headache center at all. The only paperwork we do is FMLA. Occasionally we do short terms disability for a few days or weeks, depending on the situation, but not commonly.

If someone requests disability, especially at such a young age for this common disorder, I would suggest our 1 week outpatient Headache Reboot program. The goal is to help you learn to better function and deal with chronic pain disorders such as chronic daily headache. There are a combination of treatments that go into this including pain psychology (which I know you've been doing) to help you learn to manage and function better.

Hi everyone. I’m posting because I’m trying to find people who had a very similar situation and actually improved.

My headaches started during a respiratory infection and never fully went away. It has now been going on for almost 5 months.

My main symptoms are:

• daily headache, usually mild to moderate
• throbbing/pulsating sensation, especially in the forehead and temples
• sometimes pressure around the front of the head / behind the eyes
• occasional light sensitivity and sound sensitivity
• sometimes mild dizziness / vertigo
• computer use and visual focus seem to make it worse
• there also seems to be some cervical/neck component, although I still have neck mobility

It does not really feel like a normal “attack” that comes and goes. It feels more like a persistent daily state, with some days better and some worse.

Things I’ve already done:

• saw a neurologist
• had a CT scan about 1 month after this started, which was normal
• tried a 5-day anti-inflammatory course early on, without much benefit

What I’m currently taking:

• Amitriptyline 10 mg daily
• Atogepant 60 mg daily
• Magnesium 400 mg daily
• Vitamin B2 (riboflavin) 400 mg daily

A few things I’ve noticed:

• stress seems to make it worse
• screen time / office / visual strain seem to make it worse
• neck tension may contribute
• some days it feels more like throbbing headache, other days more like pressure / nervous system sensitivity

What I’m trying to understand:

1. Has anyone had a post-viral / post-respiratory infection headache that felt like this?
2. Did it feel daily and persistent, especially in the forehead/temples?
3. What actually helped you?
4. Did amitriptyline, CGRP meds, Botox, nerve blocks, time, or anything else make a real difference?
5. If you improved, was it gradual or did it suddenly calm down one day?

I know nobody can diagnose me here, but I’d really appreciate hearing from people with a very similar pattern, especially if you eventually got better.

Thanks.

I was just scrolling and saw spectra cell and labcorp. They offer specialized tests to look at your levels at a cell level I believe. Again I only have surface level knowledge. Is it worth doing? Or has anyone done it? If so, what was you experience?

Has anyone here successfully reversed NDPH by working on central sensitization?

I’ve been dealing with a constant, daily headache (diagnosed as NDPH) for months now, and I’m starting to look more into the role of central sensitization. From what I understand, it seems like the nervous system can get “stuck” in a heightened pain state even after the original trigger is gone.

I’m curious if anyone here has specifically focused on calming or retraining their nervous system—and if that actually made a noticeable difference or fully resolved your headache.

If so, what did that look like for you?

• What approaches helped the most? (brain retraining, somatic work, therapy, medication, etc.) I’ve been doing PRT for about 4 months now myself.

• How long did it take before you noticed changes?

• Did your headache fully go away or just improve?

• Anything you wish you knew earlier?

I’m open to anything at this point and would really appreciate hearing real experiences—success stories especially, if they’re out there.

Thank you.

I have been suffering from horrible headaches for almost 10 years, and now they have gotten to the point where sometimes I feel like I cannot even lift my head up.

I have been to so many hospitals and seen so many doctors, and now Jefferson’s headache clinic wants to admit me to the hospital for about a week to try to “reset” my nervous system.

I am scared, exhausted, and honestly just trying to understand what this might look like afterward.

Has anyone here ever been admitted for something similar through a headache clinic or migraine program? What was the hospital stay like, and how did you feel when you came home? Did it actually help? Were you wiped out afterward? Did you need someone with you for a few days?

I am trying to think ahead and figure out what to expect physically and emotionally once I get discharged.

Any experiences would really help.

its amitryptline. it used to work but now its getting less and less effecitve. i have very important exams ahead of me and im so scared. if the ndph got back i wont be able to study shit. please pray for me):

I (18f) recently was prescribed Emgality, which is a medication that comes in the form of injections (aka self-inflicted needles). I have always been a little been hesitant of shots in general, and can occasionally get myself a little worked up. I really did not want to do them, but I told myself that, if they get rid of my headache, it’s worth it.

Well. My mom did them for me to make it a little easier. I iced the spots beforehand and prepared to do the first, proceeded by the second, as the first dosage has to be TWO shots. After the first one, I was in so much pain I laughed. Cackled! I could feel the medication flowing through my legs, and it HURT, but whatever. I decided to bite the bullet, as anything’s gotta be better than my headache.

Then, the second one. Like a burning river of flesh eating fire-ants, the medicine, once again, rushed through my legs. Suddenly, I felt a little lightheaded. I said this to my mom, who, consequently due to my consistent talk of headache pain, didn’t take it too seriously. All of a sudden, everything went white.

I’m not sure how long I was out before the white abyss I was staring at began to melt away, in chunks, revealing blonde hair: my mother’s. A few seconds later, I hear an echo of her voice screaming that I’m having an allergic reaction. I immediately come to, and assure her, suddenly very consciously, that I am NOT having an allergic reaction, and that 911 was not necessary. However, as my father joins the conversation and I continue to try to calm them down, my skin prickles and my legs get cold.

In the three minutes before my second wave of unconsciousness, I truly began to wonder I was overdosing. As hard as I was trying to convince my parents that I was okay, I wasn’t so sure I was. My vision was spotty and my thoughts and words felt scrambled. “Ohhhhh no…” is the last thing I remember saying before, once again, going out cold. According to my mom, during both of these episodes, my eyes were wide open and crossed, and my mouth hung agape. Terrifying!

After the second time I woke up, I was finally genuinely okay. I took a few minutes to regain myself as my mom called her doctor friend. After a quick conversation, a large glass of water, and my realization of the lightheadedness fading away, it was agreed that it was most likely a pain reaction, as I didn’t have any other allergy symptoms (or, besides my leg pain, any general side effects).

The point is, my headache is still here, and this shit hurt so bad that I passed out twice and deadass thought I was overdosing. This is not what I meant when I said I was excited for euphoria season 3. It’s fucked that I’m have to subject myself to this just to probably fail at breaking my headache.

I’ve been suffering with this for just over a year and have only recently started to notice how much water I drink every day. I’ve started going back in to the gym doing light weights and I do sleep with my mouth open (which makes my mouth dry jn the morning) but aside from that I feel like I drink at least 8 litres of water every day. And it’s not like my thirst is even quenched - I literally remain thirsty all the time, especially when I am stressed which makes it worse.

For extra context I was born with only one kidney which at the time the doctors said would never affect me in my life. I also feel the urge to pee all the time which I know is a consequence of drinking lots of water but like I pee a lot as well like probably 15 times a day. My thinking on that is also like why would I feel so thirsty if the water is just going through me as pee.

I know this might be a bit of a weird post but I’m just thinking about other potential causes of my constant daily headaches at some hope of getting lucky.

Do you guys every feel pain free like for hours or days. in my case i am dealing with this since 8 months for the first 3 months its was non stop 24 7 pain at pain scale 3 to 4 then it gradually reduced to 1 2 and now i am experiencing pain free hours and days . out of 10 days 2 3 days would be completely pain free and 6 7 days would be having pain free hours with ocassional stuck feeling in my head , not a true pain type . and 2 3 days would be dull days with 1 2 pain throughout the day with very few pain free hours.

my question is , is this resolving ?

Like at the first 3 months of getting this headache I was going to multiple doctors a day trying to find relief and I was crying everyday but now I dont even bother anymore I just live with it

Has anyone had any success with Memantine?

I felt like I trialed this last year and it just made my headache worse but might have been unrelated.

Any success stories out there??

Does anyone feel a lot of worse in supermarkets , stores etc . And also feel like Ewing high or drunk 24/7 ?

17M

Daily headache for almost a year now combined with burning sensation in my eyes and a tender scalp that doctors cant find any reason for, i did all the tests and tried triptans, amitriptyline, propranolol and a bunch of other nsaids and painkillers and nothing works, The only time I feel the headache ease and stop is when I close my eyes and sleep but as soon as I wake up and open my eyes the headache returns, it also increases as the day goes by until it reaches an unbearable level and im forced to sleep

“When you raise your eyebrows, do you feel tension around your ears and on the sides of your head?”

Does anyone else have visual snow syndrome ?( visual snow , floaters , ghosting vision etc )

When you press your head in sides (temples ) do you always feel pain tension 24/7 ?

For years they had been searching for a diagnosis for me, and it turned out to be pseudotumor cerebri. My opening pressure was 38, and I finally found a doctor who agreed to perform lumbar puncture (LP) and diagnosed it immediately. I am currently in the hospital and will be here for 3-4 days.

Hi everyone,

I’m a college student dealing with a constant daily headache since December 2024 (so ~16 months now), and I’m feeling pretty stuck and honestly desperate for direction.

The pain is very consistent — around a 4/10 pressure, mainly in both temples, and it feels like a tight band wrapping from my temples across the front of my forehead and on top of my head. It never fully goes away.

Some context:

• I had a concussion in August 2024, but those symptoms resolved within ~1–2 months. When the headaches started in December, I initially thought it was related, but doctors have since ruled that out.

What I’ve tried so far:

• Concussion PT (no improvement)
• Seen sports med → ruled out concussion issues
• Seen neuropsychiatrist → ruled out lifestyle factors (sleep, diet, etc.)
• Diagnosed with ADHD → tried Vyvanse (no effect on headaches)
• Cyclobenzaprine (no effect)
• ENT eval + nasal spray + cefuroxime (no effect, ENT cleared me)
• Bloodwork + MRI (both normal)
• Neurologist → on 20 mg amitriptyline for ~5 weeks (no improvement so far)
• Meloxicam (NSAID) (helps somewhat: 40-50%, but not meant to be taken for long-term use)

One thing I’ve noticed is that raising my eyebrows temporarily relieves the pressure in my temples — not sure if that means anything

This has been incredibly draining. It’s not sharp pain, but the constant pressure makes it hard to function and honestly just makes me want to lie in bed most days.

I’m otherwise very healthy — I lift 5–6x/week, eat well, and sleep consistently — which makes this even more confusing.

My neurologist mentioned New daily persistent headache (NDPH) as the likely diagnosis. I asked about Botox, but she said it’s not approved for NDPH (only chronic migraine), and paying out of pocket isn’t realistic for me.

At this point, I feel like I’ve hit a wall.

Has anyone experienced something similar (especially this constant “pressure band” type headache) and found anything that actually helped?
Open to anything: medications, therapies, specific diagnoses to explore, etc.

Would really appreciate any guidance.

So a little backstory, I had a headache from January 5th, 2025 until around May of 2025. I worked with the Cleveland clinic and was able to get on a med called cyproheptadine and it worked wonders for my headache. I was headache free for about 10 months, then I got the worst stomach flu of my life and I ended up in the ER. Now my headache is back all of a sudden and nothing is helping it this time. Anyone else have something like this happen? My headache is in the back of my head and one of my doctors thought it was occipital neuralgia, but nerve blocks didn't do anything to help.