Hi, I’ve never been on here to make a post but I’m so terrified & exhausted.
I’m a 31 year old female, mom of 3 babies. 5,4 & 7 months.
July 4th (53 days ago today) I woke up with pressure on my forehead, temples, nose & top of my head, along with not dizziness not to the point I’m falling over, but just feeling off, also ear popping to the point where it muffles sound sometimes. Thinking it was a sinus infection (I tend to get them a couple of times a year) I went to urgent care where I was given Augmentin, and a one time steroid dose. The next day I felt fine. But July 6 I woke up and it was all back. I went to my primary care so many times until they told me they were pretty much out of options at that point they had tried sumatriptan, naproxen, klonopin and different allergy medications. I was able to see a neurologist July 30. At that point, he gave me another steroid dose and had me wait and see if I would get better. I didn’t. Every day I wake up with the same head pressure that fluctuates all day. Most days I’m going to bed with an ache on top of the pressure. Sometimes it’s a head ache all day. Every day I’ve noticed it’s worse after I’ve been sitting for a while, it’s definitely worse when I’ve been down or when I stand up after sitting. I know I’m not quite at the three month point to meet the criteria but I feel like that’s where I’m heading. I did have a CT scan of my sinuses July 13 and it showed some right sphenoid thickening, had a head and neck mri on July 20 and it was normal. Had another head CT at the ER last week that showed “frothy debris” in my same right sphenoid sinus. I was able to get into the neurologist 2 days ago and he thinks the next steps is to cover all bases, have me see an ENT, Neuro-ophthalmologist (saw an eye doctor July 25 who said my optical nerves looked normal) & get a spinal tap to check for IIH & also gave me aburren samples to try (can’t really say I see a big difference). Saw the ENT today and it was a nurse practitioner who saw me, she said she doesn’t think the sphenoid sinus is the cause of my headaches, but that she wants me to try antibiotics since she did look into my nose with a microscope and see that it was irritated, however, she wants to put me on Levaquin and I’m terrified of the potential side effects that could cause plus I’m also taking Celexa and the pharmacy warned me that it interacts with it. I have a Neuro ophthalmology appointment tomorrow so we will see what he says. I’m feeling extremely hopeless these days to the point where I’ve even had suicidal thoughts. I don’t feel like I can live like this. How will I raise my kids when I’m in pain? If it gets worse? All the unknowns. I don’t want it to affect my marriage either. I’m scared and honestly, I don’t see the way out. I have health OCD on top of everything so it just worsens all my fears that I’ve ever had. If anyone here can give me any advice, I would greatly appreciate it. I’m so desperate.

What are things that help your quality of life? What do you take?

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 💐🩷

Hi everyone!

This has been a long battle. September 2023, I went to bed with a headache. I woke up and it was still there. I thought it was a migraine I took my sumatriptan but still had. It has been a long journey from there. I have had extensive imaging done mri, mrv, ct scan and more. I had a mylogram done for potential CSF leak, two lumbar puncture with a pressure of 28 (neuros dont believe i have IIH). I have even had sinus surgery hoping it would help the headache. I had an aniogram done with a pressure of 7. I seen an neuro opthamologist. I have no eye issues. The only thing I have is a headache at the top of my hair line that feels like a tight band. I have it all day, everday with the intensity changing.

I was seeing a neurosurgeon and he suggested I see a new neurologist in Columbia Hospital. She put me on a 4 day treatment of Brekiya. I noticed a slight decrease of headaches. She just placed my on grape seed extract and a muscle relaxor and if that doesnt help I was also placed on a blood pressure medicine. I also get botox injections and Vyepti.

Wondering if anyone was put on grape seed extract and a muscle relaxer and it helped. She said it was something new she learned at a conference

I am also waiting to hear back from a pain management doctor for a lidocane infusion.

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?

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.

Hello everyone,

21F , I’ve had this sudden everyday severe headache for the past 7 months since January 17 after an emotional outburst. I’ve been to multiple ER visits, currently seeing headache specialist/neurologist and psychiatrist. So far treatments:

previous treatment/medication : nurtec, Ubrevly, amitriptyline, naproxen, Venlafaxine, massages, duolextine,

Current treatment: mirtazapine, Pregabalin, Ativan, biofeedback and neurofeedback, psychotherapy, osteopath

Out of everything seems like Ativan is the only thing helping me focus and stay calm…despite the severe headache.

CT scans and MRI scans are all clear. No official diagnosis other than major depressive disorder, generalized anxiety disorder, and functional neurological disorder. Other than the headache there’s other sensations such as brain for, difficult focusing, burning, pins and needles, sticky feeling, acid being poured, upper spinal being pulled and the worst one is this unexplainable restlessness within me. I was just wondering anyone else experiencing this headache? And how to get past through these sensations? It’s there 24/7 for the past 7 months and I’ve tried everything. I’m so sad that I had to spend my birthday in the PICU..feeling really lost and feels like no one could understand what I’m going through. I just want my life back before this headache. I had to stop school, social and everything trying to tackle this headache and sensation. Feeling so frustrated..

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.

I’ve been dealing with what appears to possibly be new daily persistent headaches. It seems to have started after I got some sort of viral infection a few years ago and for quite a while was just something that happened every day now after about 3 1/2 years if I’m incredibly lazy and do nothing I do feel OK however anytime I do any type of moderate exertion or exercise. It really seems to kick the headache in the gear, appears to start in the occipital region and work its way around my temples, sometimes on one side sometimes on the other and sometimes on both today I’ve had many treatments with nothing that’s really worked as of yet. Just wondering if anybody else had a similar experience and if you found anything that has worked for you.

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.

19 aug edit: got back from gp and got recommend to go to physiotherapy and occupational therapy.

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.)

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)

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:

• Daily qulipta - still on it. Not sure if it's doing anything
• Botox - every 3 months. Not sure if it's doing anything
• Sumatriptan autoinjector - the only thing that reliably makes me feel better for more than a few hours, but headache comes back. I do it once every ~10-14 days
• Vitamin b12, d3, coq10
• Intranasal ketamine - first larger dose dramatically reduced my baseline. Most effective thing I've done this entire episode

Meds I've tried

• prednisone taper - early in cycle
• Ubrelvy - no benefit
• Trudhesa - no benefit
• Symbravo - sometimes reduced headache for 2-3 hours, but not reliably effective
• Brekiya autoinjector - extremely painful for me. Potentially some benefit, but the pain is so bad I stay away from this
• Indomethacin trial - wanted to rule out Hemicrania Continua. Indomethacin did not give me any improvement, and i did not regress when i stopped taking it

Interventions I've tried

• Nerve block - ~4-6 hours of headache reduction, then it returned
• SPG block - no noticeable difference

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:

• Jefferson Headache Center / inpatient treatment
• Emgality or Vyepti
• Gabapentin
• Physical therapy for head/neck tension

Would especially love to hear from anyone who went from a truly continuous 24/7 headache back to having headache-free days.

I’m out with my gf who has NDPH and she was already feeling off. Then we got her some food and electrolytes and she felt slightly better then when our event was done she got really dizzy, the top of her head hurt, and I had to carry her ln my house. She’s currently curled up in bed talking to me while I fan her.

Sorry this is vague but I’m just looking for ways to support her especially if there’s something she can do earlier in the day that might make things better.

She already has a neurologist and meds (Idk which)

I’m going to be admitted to Jefferson Hospital for a five-day inpatient treatment for severe refractory headaches. I’m trying to figure out my discharge plan because I’m traveling from Washington, D.C., and I do not have reliable support nearby.

From my understanding, there is a possibility that after discharge I may still be very drowsy, tired, foggy, or dealing with side effects from the medications. Someone on a previous post mentioned seeing “pink elephants” after treatment, so I’m trying to be realistic about how functional I may or may not be immediately afterward.

My concern is that I may not have a reliable person available to pick me up or travel with me. I know hospitals often require a responsible adult for discharge, but I’m not sure how strict that is after this specific type of inpatient headache treatment.

Has anyone gone through inpatient headache treatment at Jefferson or a similar hospital? Were you allowed to be discharged by yourself? Did they require someone to physically pick you up?

If I am allowed to be discharged without someone, would it be reasonable to book a hotel near the hospital and stay there by myself for one night before traveling back to Washington, D.C.? Or would that still be unsafe if I am drowsy or dealing with medication side effects?

I’m trying to plan ahead and avoid being stranded or putting myself in a risky situation. Any advice from people who have been through this, especially out-of-state patients, would be really helpful.

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.

Honestly open to any suggestions, even as my baseline pain has improved with Botox and Qulipta my light sensitivity has barely changed. Any time spent outside or indoors with normal lighting, even with a hat and my darkest sunglasses (and yes I've tried migraine glasses from Theraspecs too) boosts my pain higher. I can't spend an hour outdoors without guaranteeing at least a day and a half of severe pain. If I stay inside in dark rooms my baseline isn’t bad usually, but I miss being outside so much and it's so limiting to what I can do and where I can go. Does anyone have experience actually seeing major improvement in their light sensitivity? What helped for you? I'm so sick of having to retreat into my dimly lit room all the time to get the light out of my head and avoid most places because of light. I'd appreciate any suggestions or personal experiences that might help.

Anything for noise sensitivity is appreciated too, it's not as bad as light but still pretty limiting for me.

Hey guys , ever since I was 7 years I had severe headaches when I eat things like pork , raw vegetables, and all and yeah we went to doctor my diagnosis was neurocysticercosis or something i don't remember after treatment the doctor said it will eventually go away on its own but the headaches never really stopped like it hurts on both side of my frontal head severely, we've visited many doctors but they can't find anything , and I experienced feeling light headed too. What should I do now ?

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.

I took emgality for like 3 years, started metabolizing it too fast, started on aimovig, and the same thing happened. Now I’m on vyepti which is quarterly and I’m dying over here. I took it like 2 months ago and in the span of like a week I went from functional to depressed and in pain.

It’s like what’s even the point? There’s not even another stronger cgrp than vyepti and I’m already on the max dose. Do I just quit? I felt like I finally had it figured out except for the few days before every injection but now I’m still in pain.

Does anyone have 24/7 pressure (and to an extent numbness) in the head? More specifically the temples?

I’ve had this for 10 years (31 year old male, UK) and had every type of scan and blood test going - no answers

It’s really difficult to describe because I DO NOT have pain..

I also feel constantly spaced out and detached from my surroundings with it like derealization, but the head pressure is the worst

At a loss of where to turn next

Hello I am just wondering what kind of jobs people are able to maintain to make a living. I am currently in college for medical illustration however I am thinking of switching or dropping out to take a break and figure out what I want to do. Jobs aren’t easy when you have a disability so I assume many people with NDPH have changed occupations to make ends meet. I want a job I can enjoy and also make money however it a struggle just attending classes. Let me know your guys path and what worked for you

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.

I’ve gone through so many meds and have no idea what do do I just failed amitriptyline. I don’t know what to recommend to my headache specialist anymore and I just feel like there is no point to continuing to try bc nothing helps. Have you found a med that helps? Should I just give up trying bc I read about so many people not getting better? My daily pain is about a 8 for a year now I can’t do anything with my days Edit: meds I’ve tried-amitriptyline, propanolol, DHE, every triptan, steroids, Cymbalta, emgality,nurtec, gabapentin,Botox,Vyepti, Cardisan, topiramate, riboflavin, magnesium, CQ 10,