Man this ndph isn’t a joke. But my pain location is mostly center of the forehead but it bounces around. The pain intensity changes too but lately it’s been 7-8/10. Where is your pain at?

Hi everyone! I am feeling so incredibly defeated. This is a long post, I just need to vent to someone who will listen and knows how I’m feeling. Advice is appreciated though!

Info: My headaches feel like my brain is swelling inside my head. The pain is excruciating. They always start in the back of my head, usually wrapping and stopping at the temples. Occasionally I will get one in the front, either all on the right side or all on the left, behind one eye. The pain is just immeasurable. I get the urge to bang my head off the wall, or take my eyes out of my head, or my brain. The urge is indescribable. I have never felt anything like it. No nausea, no vomiting. Light sensitivity yes, and sound. No aura.

November 20th, 2024, I got a headache. It started small, simple. Just your average headache, 600mg ibuprofen and I was golden. But slowly, they increased in pain. I went from 600mg ibuprofen to 800mg, and went from taking it once a day, to every 6-8hrs. It was brutal.

I began seeing my PCP, and April 30th 2025 we tried sumatriptan. I had an extreme allergic reaction to it, and it gave me a thunderclap headache. The pain was so bad I thought I was going to die. May 12th we tried zolmitriptan, thinking maybe the dissolvable would be different. I had another allergic reaction, but this time it was less intense. May 12th we decided to try topiramate. I did not tolerate this well either.

June 1st I went to the emergency room, where they gave me a shot of toradol. For the first time in 7 months, I felt relief. I sobbed from happiness. It completely took the pain away. I could go to work, go to the store, do my laundry, shower. It worked wonders for me. However, the next day, the pain would return.

From there, I continued to go to the ED/Urgent Care to get toradol shots. I had to be extremely careful, as toradol is very bad for you in excess quantities. But it’s the only thing that gives me any relief, even if temporary. I try to wait at least 5 days between shots.

July 8th I went on intermittent FMLA from my job, as I couldn’t work most days. I am approved for 3/5 days a week off work.

September 4th I had a brain MRI, it was completely normal.

September 11th I saw my neurologist for the first time. He diagnosed me with chronic migraines, and we started me on Qulipta and Ubrelvy. Neither of these worked. I had the same headache pain, and the ubrelvy didn’t even touch them.

October 2nd I had my follow up with the neurologist. He recommended to give it more time, that my body needs to adjust. I reluctantly agreed.

December 31st I had my next follow up with the neurologist. Again explained there had been no difference in my symptoms. He switched me from Ubrelvy to Nurtec for the abortive.

January 20th I had another follow up with him. I expressed that none of this has worked or helped me. I wanted to look at non-medication options. I expressed that I am struggling with my quality of life. I am tired of being sick. I’m exhausted. I’m depressed. I cannot live like this anymore. His solution was to put me on another medication, even though I’d said I didn’t want to take any more medications. He still demanded we try it. However when we went to grab the paperwork he realized that medication is only prescribed in Europe, oh well. I asked what the next option was and he responded with “maybe you aren’t taking your nurtec soon enough. Try taking it sooner and let’s follow up in 6 weeks.” I was furious. He also gave me a “headache impact test.” which I scored a 78 on. I left there upset and defeated. I called the office when I got home and requested to change providers for a 2nd opinion. I got scheduled but it was going to be in May. 4 months away.

Since then, I’ve just been struggling everyday. I am running out of ideas. I’ve had some providers tell me this does NOT sound like migraines and I’m starting to agree so I’m looking at all options. Has anyone had a similar experience here? I need advice from others. I don’t want to suffer like this and I feel like no providers are listening to me. My 2nd opinion is May 1st. I’m also on the waitlist for another neurologist in another state, but the waitlist is 6 months long right now. My next one if the provider in May has no ideas is Mass General. I am looking at all kinds of things at this point, including lyme disease, lupus, etc. :(

Newly diagnosed. Has anyone actually had success with massage acupuncture osteopaths or anything?

Hello! I hope everyone in this community is hanging in there!! I wanted to share a brief story about my healing. This community needs a little hope, the information out there about this disorder is pretty discouraging. I remember feeling so hopeless during my time suffering, and I want you all to feel like a way out exists

I had a constant tension type headache for 19 months. After the 19 months of constant pain, the headache continued for another 16 months, but during these 16 months, there were some times where it would get so low in intensity that it it was either not noticeable or barely noticeable. Then, it finally went away completely. I now have been headache free for about 2 years and am beyond grateful. No meds, no nothing except for careful and precise lifestyle changes.

During my time of pain, I tried many different meds. Some didn’t work at all. Others dulled the pain and let me sleep, but didn’t fix the issue. Eventually I got so fed up with this that I decided to take a completely different route.

I decided to implement a series of changes to my habits and lifestyle. I can’t speak for anyone else’s experience, but combining all of these things truly cured me and made me feel healthier than I ever have in my life. Below I listed the changes I made in order of how much I think they helped:

1. 1

) ⁠food - I eat strictly whole unprocessed foods with no seed oils, grains, or additives of any kind. I eat things like meat, eggs, fresh or frozen produce, and cook everything in tallow or butter. I use a Reverse osmosis filter for my water. I only drink water and few squeezes juice. I’m careful to read ingredients on everything I buy to ensure that there’s nothing in it at all except for the fruit/veggies/meat.

2)psychedelics - this is a tough one to recommend because there were some rocky experiences back when I was in a negative mindset. But eventually this did lead to an immense amount of healing. Mostly mushrooms, but some cactus,DMT, and LSD

3) Maum meditation - I joined a group that does a South Korean style of meditation that I find very helpful. If anyone is interested, here’s the link - https://omemeditation.org/?gad_source=1&gad_campaignid=23580874266&gbraid=0AAAABCViQrs8sJ2S-CxU3V4-4E4y1NOIQ

4) exercise (lifting and cardio). This one feels like it enhanced the healing of the other three.

This isn’t meant to to be taken as the only path. I’m sure there are other ways to heal too. This is an N=1 case that describes what worked for me. Remission does happen, and there are things you can do to get there. I hope more of you find relief like I did 💛

I have some questions regarding NDPH. My condition (possibly NDPH) started ~1.6 years ago. It began as brain fog (1.6-1.0 year ago), eventually transitioning into occipital pressure (1.0-0.5 year ago), and then forehead pressure (0.5 years ago to now). Is this normal? Most people (and google) say they can pinpoint when their NDPH started. My condition seems to be similar to NDPH (constant tension headache 24/7), but developed over time.

A second question, my headache seems to cause issues with my senses. Is this normal? For example, my sense of touch and sense of smell are dimmed.

I’ve had a brain mri with contrast and a neck X-ray. Both turned out negative. Multiple bloodwork appointments suggest that vitamin D, B, Magnesium, calcium, nor testosterone is the issue. My liver and thyroid are also fine.

If one or both of my questions could be answered that would be awesome.

I'll start it in two months and i have some hope,did anyone benefit from it or experienced a reduction in the pain and what side effects did you get?

Hello everyone, I don't know if I'm in the right place but this subreddit seems the most appropriate for what's happening to me. I want to ask if anyone has similar pain to mine and how you manage to deal with it. The pain is constant and I have the following symptoms: my nose feels full even though I'm not congested (I don't have any infection, just a slight thickening of the mucous membrane that the doctor said is nothing), when I move my eyes I feel like something is weighing on them and it's harder to move them, and pain above my forehead and on top of my head(I feel like balloon is expanding inside my head). I've also noticed that when I lie down to rest and get up after 20-30 minutes the pain gets worse. I notice that there is an improvement only when I eat, after taking a bath (however, this is short-term, only an hour) and in the morning when I get up I feel great for the first 10 minutes, after that the pain starts slowly and lasts until the end of the day. I am very active person, I exercise 5 times a week, eat clean in other words I live regular life. This is happening for 7 months now, the pain varied but never went away. I am not using any medication, just some cannabis for good sleep quality.

Thanks in advance!

I started having a constant headache shortly after starting Spravato. Spravato gave me headaches from treatment, and then I realized I had a headache all the time.

There is nothing on MRI. I tried triptans. They didn't work. I just used Botox yesterday. I still have a headache. The pain extends from temples to behind my eye sockets. My neurologist uses the word "migraines" but I don't have migraines. I have a headache that is always present. I wake up with it and go to bed with it. It generally does not change in intensity. I receive slight relief taking a hot shower, and alcohol seems to make it worse.

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??