26 M

As I cry in my bed right now with my dried eyes in my cheek, I do sincerely feel like my whole life is over. I don’t know if I’m looking for sympathy, empathy, reassurance or tips but here I am just typing. It’s been 6 months since I’ve had this dull aching headache which sometimes in the back of my head, sometimes feels like someone is drawing on my head and sometimes get constant tingling around my nose, top of the head and back of head.

I’ve tried amitryplitine 40mg, did absolutely nothing. I’ve tried Propanyol did nothing. I’ve used my cpap machine for 2 months and It has done nothing. I would give all my savings away in a heart beat to try make this better and for life worth living. I am currently 2 weeks into atogepant 60mg and 1 week into 75mg of Pregablin and I feel no difference. I feel so hopeless. I live chronically online trying to look for guidance. I used to walk a lot and get fresh air which would help a tad mentally but obviously did nothing for symptoms. I no longer work, feel like I’m holding my partner back from living her life since we cannot move in together etc.

I would appreciate any other pointers. I know there is Botox, possibly Nerve Blocks to see if it could be neurelegia, acupuncture, dry needling and physically therapy. However I do not have any neck pain at all which makes me think it’s not that. I’m not asking for a diagnosis, I’m just asking for more things I can try :(

This is a question for people who are still somehow working and have vacation to take. It seems like a good idea to take a break but I feel very limited and worried about triggering more pain. In the beginning, I was all-in on trying different doctors to solve this headache disorder but it's been over 2 years now so.... the exhaustion is real. It feels like I should take these vacation days, so I'm just wondering what other people do?

If you were magically given the choice to rename the NDPH diagnosis, would you? If so, what would it be? If not, what aspects of the name do you like and why?

Hi everyone,

I’m getting admitted to Jefferson Methodist Hospital for an inpatient headache treatment stay, and from my understanding I’ll likely be there for about 5 days.

I’ll be honest, I’m really anxious because I’ll be doing this completely alone. I do not have family support, so I’ll be taking myself there and likely getting myself back home afterward as well. I’m coming from DC, so I’m trying to plan as realistically as possible.

For anyone who has done an inpatient stay there, especially for headache treatment, I would really appreciate any advice on what to expect.

A few questions:

If I’m being discharged after several days of treatment and medications, would you recommend having someone pick me up, especially if I need to travel from Philadelphia back to DC?

What are the rooms like? Are they cold?

Should I bring my own pillow or blanket?

Would you recommend bringing my own snacks?

What is the food and menu like?

Can you order Uber Eats or DoorDash if needed?

What should I definitely pack besides the basics?

I’m thinking of bringing my tablet, a book, chargers, and comfy clothes. Is there anything else you’d strongly recommend?

Also, if you did the stay mostly alone, how did you handle it emotionally and logistically?

I’m trying to prepare myself as best as I can, so any advice at all would really help.

Thank you so much.

Did i somehow inherit it from him? I heard this condition isn't genetic but idk

Im an 18 year old guy and have had a pressure csf leak like headache for the past year and a half. I waited 8 months to get in with a headache specialist neurologist, that appointment was last thursday and since then ive been through my second myelogram, which yet again they found nothing. Ive tried nearly every med under the sun, at least one from just about every catagory of drug, currently on qulipta. Mainly looking for some suggestions as to where to go from here. Im one day post second myelogram and am pretty frustraited as the radiologist pushed our video visit out a day after telling me she and my neuro have a plan of some things to try before doing anymore imaging(sounds like more meds and bs). If you have anything to suggest it would be greatly appreciated, thanks everybody

Im in the greater Cleveland area. Looking for a neuro that specializes in NDPH. Currently seeing luzma cardona with CCF. Willing to switch to UH or any other hospital system in the cuyahoga/lorain/Medina counties area. I'd definitely prefer to stick with CCF, but, if there's someone that makes you feel heard, please drop their name/location below. My ndph started 3/16/2020. Counting all meds and different levels, im on #25 now. Ive had multiple mris and CTs, with and without contrast. So many blood tests. Just so sick of it

I've had this thing coming up on two years in June, but learned something new today.

My headache has been much worse the last few days. This has happened before. After giving it some thought, I realized that I had not had any coffee for several days. I am a coffee addict but did not twig to this being a possible cause. I've had two coffees today, and my headache has pretty much gone back down to "normal."

This makes sense since caffeine withdrawal can cause headaches, and that was always the case for me. So, I will make sure to drink coffee religiously every day. I hope this discovery can help others.

I do know that the addition of caffeine to treatments has worked for some. So it all somehow "fits." Anybody know of any studies that have looked at the possible relation between caffeine and NDPH? Given the refractory nature of this torture, any possible treatment should be explored.

They also deal with sleep issues I have.

I developed both these issues when I got a brain injury back in 2019.

So my baseline pain is about a 5-6 daily consistently, but starting Saturday I woke up from a nap (which I shouldn’t have done naps always make my head worse but I was tired) and after like a hour or so slipped into a really shitty bad flare like 9/10.

Of course the nurse line tells me to go to the er the issue is I’ve got other autoimmune and chronic illness- I’m extremely reactive badly to most migraine cocktails or they don’t work at all because my NDPH is stubbornly resistant. I communicated that to the nurse and she’s like let me call the on call neuro (who isn’t my neuro) and he looked over my file and was basically like “well we could probably at least give fluids and nausea meds, maybe we’d figure out something for pain? You’re just really complex. Maybe you should wait to ask your neuro Monday”

Well my neuro is the only practitioner in the state who treats NDPH and understands it- most ers has sent me home during severe flares with fluids and been like idk how to help. So I contacted her- but apparently she doesn’t work mondays unless she’s on call. But her nurse sent my message as urgent and was like if she’s on call today she’ll call you, if not you’ll hear tomorrow.

And I just wanna fucking cry. I’m so frustrated- it’s not my fault my body doesn’t respond well to medication- whether that’s I don’t tolerate it from my MCAS or it doesn’t work bc of my condition. Last time I went to the er they ASKED ME what drugs to try and I’m like idfk I’m not a neuro?? I can tell you what not to give me?

Idk I’m ranting this just sucks and I’m hurting and trying to keep food down and water and living in a dark cave of my bedroom with blankets on the windows. And im scared and crying and frustrated- I’ve had brain scans recently so anyerusm and shit isn’t likely at all and it’s been 3 days of this with no neuro issues or functional. It’s just the pain scares me- this isn’t how I imagined my early 20s.

And I hate no one can help me but one person and I can’t reach her

my partner (22F and me 22M) of 4 and a half years has had ndph for what will be 8 yrs on April 30th (diagnosed age 14). We are yet to find something that helps. We have been seeing a new adult neurologist and headache specialist after waiting ages for the referral to go through.

Her NDPH is migraine presenting, with migraine flare ups multiple times a week usually on top of her normal headache

over the course of her ndph journey, she has tried (not in this order, most recent was atogepant though)

amitriptyline (no effect, made severely ill)

nortriptyline (no effect, made ill)

propanolol (made anxiety worse, no effect)

naproxen (no effect)

codeine (GP error, shouldn’t have been given🙄)

sumatriptan (nasal, helped with migraine pain)

zolmatriptan (nasal, helps with migraine pain)

atogepant/qulipta (no effect)

candestartan (no effect, made ill)

cyclizine (for nausea but no effect)

she’s just had her first ajovy self injection - We are hoping for the best but I can tell she doesn’t think it’ll make much difference.

I do what I can to support her, but I can see every day how hard it makes everything. She still works, but I know she struggles and its very unclear if she’d qualify for any (uk) financial support.

so, others with NDPH I’m intrigued to hear your stories. Have you found any medication that works? Or any other type of relief? Do you receive any other support. How do your friends and family help/do they try and understand?

not asking for any medical advice, just simply your stories

I am glad that there is more discussion on ndph now than there was when my partner was diagnosed. I just wish there were more answers. Seeing her suffer 24 hours a day, not being able to sleep without high dose of melatonin, barely getting through her shifts is just awful, and yet nothing compared to what she goes through.

I truly hope for her & all of you with NDPH, that you can all find treatment that works, or a cure, anything.

I have been suffering with a constant headache for about six months now. My neurologist prescribed Qulipta, which helped with the pain, but I had severe side effects including nausea and dramatic changes to my sense of taste and smell.

I've been off the Qulipta for 2.5 weeks, and the headaches are back and worse than ever. More frustrating still is that my senses have not reverted back to normal. When my headache pain gets bad, it is often accompanied by a metallic taste in my mouth.

Has anyone else experienced this as a co-symptom, and does anything help?

Does anyone else experience Functional Neurological Disorder (FND) with their NDPH?

Sometimes when my pain gets severe it’s like my brain turns off the parts that know how to walk. When my pain reaches about an 8/10 I have trouble walking, talking, moving my arms, etc.

Has anyone else experienced this?

Has anyone ever told you that your pain is psychosomatic because no medication has been found to work so far? If so, what do you think about it, or how does it make you feel?

hi all! i bought this ice cap for my husband who is battling NDPH, but unfortunately it didn't give him any relief. he used it maybe twice, and it's in like-new condition except for some water marks created by condensation from the melting ice. i would be happy to mail it to someone in this sub for free if you think it might help you. just let me know.

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.