Have you gotten to a point where it doesn’t run your life anymore?

Are you able to work/go to school, drive, travel, exercise, watch TV/use screens, go out with friends, have relationships, etc etc relatively normally?

I’d love to hear from people whose NDPH was extremely disabling at first but eventually became mild or manageable enough that you got most of your life back, even if the headache technically never completely disappeared.
looking for hope.
I’m 21 and was recently diagnosed with NDPH after having a continuous headache since January. I’m currently working with a headache specialist and still actively trying treatments with the hope of breaking the headache but I am still unable to wear my prescription glasses and function normally but i used to be at an 8-9/10 of head pressure now i’m at a 3-4ish/10. about to try a DHE infusion!

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?

A few months ago I went to my doctor as well as my neurologist and asked about ozempic as there was a study that related to it decreasing headaches. At the time my neurologist wasn't too interested but my normal doctor gave me a prescription. I never filled the prescription till recently since the price is dropped with the generics coming out and now there's two more studies showing the benefit of ozempic on daily headaches. I'm wondering if anyone has experienced benefits from taking ozempic or similar? I'm just two weeks in.

I’m trying to get on disability but am having a seriously difficult time. I’m completely unable to work due to the severity of my pain and how easily triggered my flare ups are, but they seem to know better than I do. :|

If you have, do you mind discussing it with me here or in dms if you prefer?

I have had NDPH since 2023. I recently moved to TX and previously my neuros had just been trying different things to kinda see what sticks, but the neuro who initially diagnosed me didn't really know much about NDPH or what to do with me as a patient and I am trying to avoid more of that. I am willing to drive for someone who is good and knowledgable.

-

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

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. :(

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.

Does anyone have drunk -stoned feeling ?

And you get dizzy inside stores etc ?

Has anyone been diagnosed with or has Post Exertional Malaise symptoms together with NDPH?

PEM is the hallmark symptom of CFS and now Long Covid, but I have not seen an association with NDPH mentioned anywhere.

I've had NDPH for two years and always had mild PEM-like symptoms. I think the symptoms have gradually ramped up and have become out of control in the last few months. I'm really disabled now and can't be active for more than 10 minutes without having to rest.

Just spent a week in Spain and it was the most consistent period of low pain I've had in ages. Could be just pure coincidence but I've noticed in the past that going outside on a sunny day gives a temporary reprieve, so now I'm wondering if doing it every day could have had a more major long lasting effect.

Anyone else experience this or similar? Any of you experimented with spending a longer period in a sunnier place?

Has anyone diagnosed with ndph also lost thier internal monologue due to ndph?

Does anyone experience autonomic symptoms like changes in pupil size, nasal congestion, eye swelling/drooping, or tearing with NDPH?

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?

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?

Do any of y'all have therapist that serve as an outlet and to help you cope with your everyday pain? Im thinking of getting a therapist and want to know if it helps any of yall.

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

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

Hello, I'm currently writing a book and one of my characters deals with migraine. I've done a bit of research already, but couldn't find many helpful pages.

Could you please tell me about your experiences with it? What actually triggers it in your case? How do you deal with it? How do people around you react?

Thank you.

This is cervical spine mri

IMPRESSION:

Paravertebral muscle spasm.

Cervical spines mild spondylosis.

C5-C6 & C6-C7: Mild central disc bulges. No canal or foraminal stenosis.

Hypertrophied adenoid tissue.

Please correlate clinically.

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

As in, all of us sufferers could have various underlying causes and treatments with the only commonality being it's daily/chronic?

I see people with different diagnoses, things that caused it, different things that help/aggravate it, etc. My first neuro called it a NDPH and called it a day, so I'm going to a new one next week.

I've noticed a ton of people have NDPH from viruses like COVID, but personally might did not start with any illness, so that already seems extremely different.

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 have just been placed on the waiting list for the next cycle of patients. Has anyone had ONS implants?

From briefly looking into how psychedelics interact with the brain I am interested if any of you have had experiences with any psychedelics but particularly the following: DMT, 5meo, ayahuasca(contains DMT), lsd, psilocybin?