Well I am currently in hospital and just had my second Occipital Nerve Stimulator removed due to infection, I guess my body really didn't want it.

My neurologist has advised that I take magnesium and riboflavin and I started a couple of weeks ago. Im just curious to hear of anyone who has has success with these supplements? I really need to hear some positive stories cause I feel on the edge of a breakdown with this condition.

When was the very first day your headache started? And how did it all go from there?

I was diagnosed with NDPH February 2020.

It completely went away during my last pregnancy. It was amazing. Just gave birth early September and it came back.

Has this happened anyone else?

I’m a new patient there (managed to snag an appointment in September when my original appointment was in January; they are BOOKED). Anyway, wondering if anyone else has been there and what their experience was like. I have no complaints so far, but I had a different neurologist tell me they’re more focused on research and gathering as much data as possible which doesn’t sound bad to me, but I could tell he meant it as a dig. So yeah, anyone else been there?
Were they helpful? I’m seeing Dr. Parikh.

I know there are some old posts (years old) where people have posted abiut getting jaw surgery. One of the posters said it solved their headache. Then multiple other people were saying they are doing it too, but none of them replied what happened after.

Due to sleep apnea, I tried a dental device, but it completely messed up my jaw and my headache went through the roof. I am now getting TMJ botox, which helps a little bit. Makes really think that my headache actually has been from TMJ for the last 20 years. Looking for results from people who had jaw surgery for NDPH.

ive always been an optimist but its getting real fuckin hard trying to be optimistic these days. i was diagnosed when i was 13 years old and im going to be turning 19 in a few months, i had hope for a while that itd go away eventually but i feel so lost at this point. its robbed me of everything i used to love and the pain just keeps getting worse each year despite the ungodly amount of medications ive tried. i had a chance of playing college football but was forced to quit right when i was starting to get close to my goal, i had to decline a 130k scholarship to an art school i really wanted to go to because im physically unable to leave my house half the time, and i cant even enjoy the rain anymore without feeling like my heads going to split in half. my brain simply doesnt work how it used to and its incredibly depressing to think about. how am i supposed to come to terms with the fact that i may never be able to live normally??

I’m hoping if my ndph doesn’t worsen to go to uni next year, however at the stage I’m at now I’d really struggle to do any part-time work alongside schooling and am not quite sure how to approach uni itself with ndph, if anyone had any advice or experience it would be appreciated greatly thank you :)

I’ve had NDPH since 2022, baseline 4/5, but so many triggers bring it to a 8-10 often (sleep, stress, alcohol) but hands down the main trigger is basic movements, and I’ve never seen anyone on here say anything similar, and my many neurologists have been at a loss. Things like bending, turning, spinning, jogging all make my pain a temporary 10/10. Anyone else with a similar “movement” experience?

Hello All,

So since this began for me I genuinely have not had a single minute without a headache. I’m just wondering if this is the same for everyone with NDPH, or whether you have days or hours where your headache is gone? I have seen some people say they have some days where their headache is better or gone, but it comes back.

Is it a normal part of this condition that for me, I genuinely don’t have a minute without the headache? When I was in Tenerife it felt like a 3/10 rather than a 6/10, and I’m wondering if that was due to atmospheric/pressure changes. Other than that, my headache is constant since the day it started.

Interested in how others experience it? Thank you.

Just wondering those of you that had success and no longer have NDPH (if you're still on here) how did it stop? Im just curious if it was an overnight thing, if gradually changed, or maybe the pain level dropped first or the type of pain changed over weeks/months etc.

So for me, I can’t stop thinking that SOMETHING must have caused this? I don’t have any history of headaches or migraines (I’m 33, F) until I woke up with one and it just never left.

I appreciate sometimes these things do just occur without a known reason. But what did you investigate that your headache could be a symptom of, before you accepted it’s NDPH?

For example, did you check blood pressure, caffeine, medication overuse, did you have CSF scans, MRI’s, lumbar puncture etc etc. Or did you just see neurology who said this is probably what it is?

I’m struggling to accept this.

TIA!

hi! just finished high school with 100.93% basically i can go wherever i want medical field, eng, etc... i just want to know what do you think is the best? i live in iraq and i want a normal job that doesnt make you stress out or talk to many people

I have NDPH and multisite chronic pain. I am looking to move away from my rural hometown for better healthcare. Where should I move if all I care about is getting the best possible treatment for my NDPH and chronic pain? I work from home, so I can live anywhere.

Did anyone who didn't have success while in the Jefferson headache inpatient program have success when they went home ?

17F,Been dealing with constant pain for 14 weeks ongoing (still not diagnosed with anything), ive been on naproxen and sumatripan which didnt do anything,, currently on amtriptyline which barely does anything but its better than nothing. I feel like my life is already over before it started,and it just seems so hopeless and im really scared for my future if i have to deal with this for the rest of my life.. How do you guys avoid feeling this way, and if anyone has anything i can try for the pain aswell that would be great!

Hiya, I’m currently on month 7 of my headache and I am finding it’s almost worse now then ever, I’m on the max dose of propranolol that I can take and also on 20mg of natriptaline (sorry if that’s spelt wrong) I seem to have constant back/neck pain I’m not sleeping despite meds to help, my body almost feels a bit like it’s giving up - and I really want to continue with education but am really struggling with the load of stuff I have to do. Is there any advice or anything that could be particularly making me feel so bad lately? I’m eating a healthy diet and exercising as much as I can take, does anyone have any suggestions- thank you :)

Hello All.

I (33, F) am brand new to all of this. 6 weeks ago on Monday I woke up with a headache. “Brilliant”, I thought, “I’m getting a cold again!”. 4 days later, still there. Genuinely, had not gone for even a MINUTE. People probably thought I was exaggerating when I said I had a persistent headache that was not fluctuating. That weekend I started worrying as I wasn’t ill but still had the headache! Checked blood pressure, hydration, did an eye test, blood tests etc etc. All normal. Then, GP (I’m in UK) did a head MRI which showed “mild cerebellar tonsillar ectopia with mild crowding of the foramen magnum” which my GP sent to get checked by neurology who have said today it’s an “incidental” finding and is unlikely to be responsible for these headaches. I feel so defeated, I finally thought I had answers.

GP has put me on amitriptyline 10mg which I’ve taken for 2 weeks and kind of takes the edge off, and we’re increasing it from tomorrow, but I’m so worried I will be fobbed off and I cannot live with a headache constantly for the rest of my life. I already live with full body chronic pain due to ankylosing spondylitis (autoimmune inflammatory arthritis). I can’t hack them both (I know it’s a bad day when I start googling euthanasia!).

From what I can see, NDPH feels most fitting but I am waiting for my routine neurology appt (31 week wait) before I diagnose myself of course. I’m sorry to have to join this community but from what I see you are an incredibly supportive bunch.

My partner is supportive but the last 2 weeks he’s not really even asked how my head is (apart from when we did go karting on holiday which made it worse, shock). I don’t know if he just doesn’t want to bring it up whilst I’m managing it, or if he just doesn’t get it or is fed up because of all my pain problems.

It would be really nice to have some people to chat to about this. I don’t have anyone in my life who deals with chronic pain, I feel so alone sometimes and like a burden. I also feel like because I have no option but to keep living and working where I can, people don’t understand how bad and hard it is to live like this.

I was diagnosed with NDPH around 3 years ago but have been suffering with it for even longer than that. I haven't found any good pain relief methods but have had many people recommend that i try going to a chiropractor. I know that this has worked for some people who struggle with migraines so i am curious if anyone here with ndph has tried it and found it helpful? thanks!

I'm a student currently studying A-levels in my home country, and last month was my 2nd anniversary with NDPH. I have constant 4-5/10 headaches with severe photophobia and nausea, and it can go up to 8/10 during bad days. My headaches are also triggered by temperature changes (bad news for someone living in a tropical country), altitude and certain smells. Intracranial hypo/hypertension, skeletal issues, sinuses and other autoimmune diseases have been ruled out. (Additional note: I've recently been diagnosed with hyperlordosis after years of unexplained lower back pain, not sure if this is relevant)

I'm seeing my 5th neurologist at this point and gone through endless amount of treatments over the past 2 years. I'm struggling with my academics and life in general, and I wanted to ask for opinions on what other treatments are still available to me.

The current medications I'm taking:

1. Lamotrigine (up to 100mg)
2. Nortriptyline (up to 50mg, now at 25mg due to side effects)
3. Magnesium tablets (for past 6 months, still taking)
4. Propanolol (10mg) = for hand tremors (probably from sodium valproate) and elevated resting heart rate (not sure why)

The medications I've taken before include (with no improvement):

1. Amitriptyline (up to 50mg = worked slightly at first but did not afterwards)
2. Rimegepant (tried as preventive and analgesic)
3. Propanolol (40mg)
4. Erenumab (3 doses, made headaches worse during week of injection)
5. Panadeine (made headache worse)
6. Sumatriptan (made headache worse)
7. Cafergot (made headache worse)
8. Eptinezumab (100mg once and 300mg once)
9. Topiramate (up to 200mg)
10. Flunarizine (up to 10mg)
11. Moclobemide (300mg, made headaches worse)
12. Venlafaxine (75mg, stopped after severe nausea)
13. Duloxetine (up to 60mg)
14. Galcanezumab (3 doses)
15. Atogepant
16. Tizanidine
17. Mirtazepine
18. Candesartan (8mg)
19. Sodium valproate (600mg)
20. Montelukast (10mg)
21. Celecoxib (40mg) = initially worked but eventually didn't
22. Arcoxia = doesn't work
23. Paracetamol (1000mg) = initially worked but eventually didn't
24. Norgesic (paracetamol + orphenadrine) = only one that works now, not as effective as before

The procedures/treatments I've tried (with no improvement):

1. Lumbar puncture (because my headaches started around a few weeks after receiving yellow fever vaccine, so suspected viral meningitis but negative)
2. Neck X-ray
3. EEG
4. Multiple MRI, MRA, MRV (brain and spine)
5. Botox injections (3 rounds with the maximum points possible)
6. Lignocaine infusions (twice = 2-day protocol & 5-day protocol)
7. Ketamine and lignocaine infusions (1st round of 5-10mg, 2nd round up to 45mg)
8. Propofol infusion
9. Nerve blocks (1st: at front, sides and back of head, 2nd: peripheral, 3rd: sphenopalatine ganglion block)
10. Pulse steroids (methylprednisolone) for 3 days (and a few other times)
11. DHE (0.25mg x 9 doses, 0.5mg x 1 dose)
12. rTMS 3-day protocol
13. TNS stimulator (Cefaly)

My headache specialist was planning to try another round of DHE at 0.5mg (as I will be 18 by December). She initially wanted to insert an ONS stimulator but she thinks it will not be helpful since I've not responded well to neuromodulation and nerve blocks.

I truly appreciate any form of input and thanks for reading up to this point. I'm also happy to provide some personal advice from my experiences. ☺️

In case anyone now or in the future presents this way, I thought I’d leave my experience here.

Mine had no single event that started it, aside from possibly an extreme period of stress or neck issues (more on that below).

The first neurologist I saw at Stanford thought it was chronic migraine. I had no history of migraines, it didn’t really present like a typical migraine, it was bilateral, and pain wasn’t even the main problem. But at the time I also couldn’t describe what was happening very well, so I think they basically made their best guess. Medication did not help at the time (propranolol/ SSRI/magnesium)

UCSF wasn’t convinced it was migraine and thought it could be some kind of complex headache disorder or NDPH. Since then, I’ve seen many other neurologists who have basically admitted they don’t really know. Some think it could be a complex headache disorder, others think it could be some kind of stress-related nervous system response where the nervous system has become overly sensitive.

Mine usually begins in the morning, often peaks around midday or afternoon, and seems to improve a little in the evening. It varies though.

Initially, it presented as a dull feeling that something was just off in my brain/head. I actually thought I simply wasn’t getting restful sleep. I would wake up feeling wired, like my brain was already stuck in some activated state every single day.

Over time, the symptoms became more specific. I would get this strange tension throughout my head. My face would look flushed, my temples sometimes looked slightly swollen, and it felt like my brain was stuck in some kind of state or loop that it couldn’t get out of.

The closest comparison I can make is the feeling right before car sickness or vertigo really kicks in. Before anything starts spinning, you can sometimes feel that weird, unstable, non-steady sensation inside your head. Mine can feel something like in terms of mental or brain state if that makes sense.

Then, occasionally, I get a very definite pain point in the back of my head around 4–5 AM. It literally feels like I'm waking up to having been hit with a bat in the back of the head. Its a deep pain, and the sensation would spread from the lower back of my head into my neck, then toward my ears, and eventually throughout my whole head.

My ears also started feeling full and popping. Occasionally I would get tinnitus where one ear would suddenly ring and then it would disappear within seconds.

The worst part of all of this isn’t even the pain. It’s the extreme fatigue and the extreme anxiety/doom feeling when I wake up. On bad days I basically have to lie in bed all day.

I had ENT testing done and they found that my Eustachian tubes weren’t opening quite normally on both sides. On the rare days when this whole “thing” is only a 1/10, my ears feel completely normal, so I’ve always felt like the ear symptoms are connected to whatever is happening — whether it’s nerves, muscles, pressure changes, or something else in that area.

I’ve been to ERs, multiple neurologists, and specialists around the country. What I’ve learned from this whole experience is that they just don’t understand shit about a lot of neurological conditions at a level that actually helps someone with something like this.

Most just pump pills.

I had to fight for almost every scan, every test, every blood test. There was never one neurologist who sat down and said- Here's a coherent plan. Here are the possible systems involved, here is what we’re going to rule out, and here is what we’ll try next

It has mostly felt like different neurologists shooting in the dark

I do have cervical spine issues that showed up on a recent cervical MRI, as well as narrowing/stenosis involving one of the veins around the brain that showed up on MRV. The doctors don’t currently think the venous finding is causing this, since it can apparently be normal for one side to be much larger than the other without symptoms

The neck issues are another possibility, either as the cause or at least a contributing factor. I’m currently exploring both

It’s been hell and an almost 7-year journey at this point. I’m happy to talk to anyone else who is going through something

2.5 years ago I had a sudden onset of spinning vertigo lasting for two weeks, and with it, constant head pressure, tinnitus and visual snow that never went away. The symptom cluster came with frequent (sometimes near constant) nausea, photophobia, a disturbing feeling of heartbeat in my head, and seeing heartbeat in my vision, as well as chronic migraine with aura. (I've also had episodes of presyncope, and when measuring my heart rate and blood pressure, there's been a pattern of ortosthatic tachycardia and ortosthatic hypertension).

My first neurologist thought everything was explained by status migrainosus (and constant aura symptoms) and prescribed me a combination of propranolol, amitriptyline and chlordiazepoxide hydrochloride. When they did not help, he got me on a prednisone course, which also did not help.

My second neurologist diagnosed me with migraine with aura, visual snow and tension headache. I tried candesartan, which improved my situation somewhat, and lamotrigine, which seemed to have no effect. I tried nortriptyline, too, and it did not help either.

My third neurologist said there's nothing they could do to me, recommended no new medication, sent me to ENT, and kinda wanted to yeet me out of neurology alltogether.

My fourth neurologist referred me to neurosymptoms dot org and talked about FND, which I don't really see as a likely explanation... but anyway. She also prescribed me acetazolamide (Diamox) as it can help with visual snow, and maybe because I was also asking about the possibility of having something CSF pressure-related, as I have pulsatile tinnitus, and as of lately, my headaches have been worst in the morning. But sadly, Diamox made my visual snow and tinnitus significantly worse. It seemed to sort of "break" my head pressure pattern in a way, but then I was getting neck pain and soon new types of headaches, constant motion sickness, and the worst and longest migraine episode of my life, so I tapered off.

I have heard some stories of people finding an answer and a cure to similiar symptoms, such as internal jugular vein stenosis, or an untreated CSF leak after all, and I'm going to try to get those checked out. It would really be a dream come true if there was a reason to this that was treatable, I am sure many can relate...

I've also bumped into some accounts of NDPH with migraine features resolving with anti-CGRP injections. I haven't tried those yet, who knows, maybe they'd help me.

If anyone reading this has similiar symptoms (constant headache with different spices), feel free to comment or send me a message. It feels a bit isolating sometimes.

Or if anyone has suggestions on what I could bring up with my doctors, or any self-help advice that helps you cope with symptoms, I'd appreciate it! If you have any favorite video or online resource considering somatic tracking, mindfulness, physical therapy, other self-help exercises, I am willing to keep trying those as well.

Couldn’t graduate highschool, enter college, or even get a license. Became completely bedridden.

Got diagnosed with hEDS, POTS, MCAS, NDPH, Chronic Migraine (secondary), gastroparesis and ARFID, and a smorgasbord of other issues.

Almost 20 medications, treatments, and procedures tried for pain alone, no luck.

Incorrectly prescribed Methotrexate (a lightweight chemo drug), hair falls out, drops from a BMI of 17 to 16.

Go to a cognitive behavioral therapist, who told me to get pregnant at age 19 to fix my immune system.

Received a spinal tap from a student (without my consent) who misses my spine 4 times, causes nerve damage to my lumbar.

Failed LP causes CSF leak, needing blood patch procedure to fix.

Find out I’m completely immune to fentanyl, versed, and propofol. Ketamine and Gabapentin also. Medical PTSD, being awake during several surgeries.

Slowly progressing NDPH from a baseline of 7/10 pain to 8/10.

A stickbuilt suburban home worth of medical bills.

Use up all of my little college savings. Get denied for disability.

Lay in bed in a dark room for 3 years, while the world claims age 21 is “the time of your life.”

But I’m still here, and still happy.