r/NDPH

Hi Cluster Headache community. I'm from San Francisco California, coming to reddit because both my providers and myself have been faced with limited options that not brought more than 24 hours of relief.

Context:

As of today, July 4th, is day 235 of cluster headaches, migraines, and atypical facial pain that resembles trigeminal and occipital neuralgia. The pain I have been dealing with is debilitating and incapacitating, with sensations of hot searing and stabbing eye pain that radiates throughout the left side of my face and entire left 1/2 of head, feeling like hot oil is burning my skin. I have been to UCSF and Stanford ER with both practically saying there is nothing more they can outside of steroids. I'm trying to research a better care team at UCSF that can best advocate for my well being as my current has facilitated poor health management and comprehension of the severity despite my elaborations.

Oxygen therapy can be helpful, but Stanford will not prescribe it to me because I don't qualify in their parameters because my respiratory system is not compromised. My pain management team at UCSF is struggling to find a solution to bring this pain to a tolerable level, and I'm at a loss on where to turn looking for a more diligent team. Pain Management's advice was pain reprocessing therapy, which has been only officially studied for low back pain.

So far I've tried Triptans, Lyrica, Nortriptyline, Botox, Aimovig, Botox, Celebrex, Tylenol, Verapamil, GLP-1's, acupuncture, massage. Unfortunately, all have not brought substantial relief.

The ask:

1. If you're local do you know of any providers, primarily in SF, that are experienced with complex care/ chronic pain conditions and takes San Francisco Health Plan/ Medi- Cal? I'm willing to go outside for SF as well but wanted to start close.

2. Any wisdom on how to handle this mentally and how to advocate. Whether it's personal experience, advocacy groups or orgs for the disabled/chronically ill (local preferred).

Thank you all for your time to read this.

-Naomi

Hi r/ndph 👋

We're really lost and don't know where to take things from here.. My girlfriend is having trouble with constant headaches, they've been persistent for about 7 months..

More information:
The daily headaches started from December of 2025 and haven't really stopped since then. She wakes up with the headache before even opening her eyes and it follows her for the entire day.

We went to check her eye perscription as she also said that she has troubles with a little blurry vision and light sensitivity, the prescription was only -0.25, so we put getting glasses to the side for the moment.. Then she got her blood tests done which we're all ok and she went to MR to get checked for tumors or anything that wouldn't be normal.. No abnormalities..

Her doctor prescribed her migraine medication (sumatriptan 50mg) she tried one pill and it didn't really help..

No we're stuck.. MR and blood seems to be fine, so we don't really know where to look for the cause anymore, she also gets 8+ hours of sleep and stays well hydrated, her diet is also healthy and she's active.

Her doctor told her to keep an Headache diary but there really isn't a point as she says that she on a constant 6/10 pain wise, that there is a little fluctuation 5-7/10 but its mostly the same and no real outside factors make it better/worse.

The headaches are either frontal on the forehead/brow region or on the tempels, it isn't one sided, and she also doesn't see any aura

Did any of you experience something similar? or what would you suggest we do? We just want to find the cause for it and we're really frustrated :/

I was referred to Neurology for my migraines. I initially thought it would just be a headache clinic and be for pain management. The appointment came in for a Neurologist. He confirmed i am having migraines after going through all my background and all the questions. He then done some physical tests and mentioned I had muscle function weakness in my legs, I explained I was 7mpo from a full hysterectomy and thought it was just because I hadn't started lifting weights again. He offered to put me on Duloxetine for the migraines but I refused as I don't want to be on antidepressants for anything! I said I will stick with the triptans for now. He then said he was going to send me for an MRI.....no explanation why. I had already googled everything like every single thing about sore heads as my migraines are awful sometimes and at times I thought I was going to die so I know that MRI scan won't show migraines. I am now wondering why he has sent me for an MRI. Any ideas?

I have been for the MRI and it was awful. I had stop it after 4 mins to be sick, never felt like that in my life I am not usually claustrophobic, it passed quickly and I managed to get the scan done but never again.....the feeling and the noise was horrific!

Anyway any insight into what they could be looking for in the scan would be appreciated.

Thanks.

P.S. I am in Scotland so not easy to just call up my Neurologist and ask questions or my GP..... they kinda hopeless tbh.

Hey guys, if your pain disappears close to completely before you go to sleep and when you’re very relaxed is it still NPDH?

I also have ear pain now that’s appeared as a new symptom and also disappears when I sleep.

Thanks. 🙏

Before starting, i want to highlight an important thing: i was diagnosed with OCD and generalized anxiety disorder and since i was young i was always concerned about my health and get paranoid with even the slightest symptom even if it wasn’t important. Maybe this made the whole experience worse but i just don’t want to say “oh my OCD is causing me a headache” and throw it off.
I will describe the pattern and frequency of the headaches that i am having but the time line since it first started may not be so accurate.

2-3 years ago i had a first time bilateral frontal headache (not as a band, two points) which was very weird because it is not exactly a headache but it was a weird sensation and it felt like there is something sharp on both sides of my head like a nail or a screw that is squeezing on both sides and it tend to get worse with bending forward. But it happened maybe just one time in the whole year. After that, i had it one more time and it became more frequent but still not so frequent at all. Last year, the frequency of this type of headache increased and I started to experience another types of headache. One which was on one side mainly on the side of my head/forehead and was associated with photophobia and it was severe that i couldn’t look at my phone or study or anything i used just to sit in a dark room and it gradually decreases in severity. Another type of headache that i also had is headache at the back of my head which is usually on both sides and is squeezing/pressure in character. I had all of those the last year but still they didn’t seem to happen so often.

Side note: Sometimes the headache is worsened when my head touches something like a pillow or even if i touch my headache it increases the pain.
Also, most of headache episodes lasted for couple of days and resolved spontaneously without medication.

This year, i am noticing that the frequency of all these types of headaches is increasing. The last attack was on may 2026 and it approximately continued for one month with a pain-free intervals in between, it wasn’t severe but it was there .. now i am having finals exam and i tend to have short episodes of headache which is mainly pressure headache with burning sensation sometimes.
I don’t know if this is alarming or not.. i went to a neurologist and he rushed me, i couldn’t tell all those details but he still ordered a CT venography to rule out cerebral venous thrombosis.
But i am so scared, anyone experienced the same thing?

I have a very severe health anxiety, even on the days in which i didn’t have headache.. the first thing i used to do once i wakeup is thinking “will i have a headache today?” And it is so tiring to always think about it, i feel like sometimes i am manifesting it but as i said i don’t to throw it off like that i just don’t know if it’s an organic problem or if my anxiety causing it.

Hi everyone,

First of all, thank you for this group. It's been so helpful to read about your experiences and not feel so alone.

A little background on me: 51 year old female, daily headache for 2 1/2 years, better in the morning (1/10) and worsens as the day goes on. The pain is right behind my eyes. I've tried many medications (nortriptyline, Emgality, Qulipta, metoprolol, Cymbalta, Botox (2 rounds so far)) as well as any and all combinations of HRT in case the pain is hormone related which it doesn't seem to be. I've also been taking all the recommended supplements diligently for 2 years (B2, coQ10, Bit D, Magnesium glycinate, etc.) to no noticeable effect. Currently I am taking Qulipta, which seems to help a bit, and I am going to keep trying Botox to see if that helps.

I have come to believe my NDPH was caused by a Covid infection I suffered two months before my headache started.

The ONLY medication that has been clearly helpful has been nortriptyline, and even at the 10mg dose it made a big impact. Immediately. However, the side effects (dry mouth, constipation, trouble focusing eyes, increased light sensitivity, etc.) did not go away after taking for 2 months, and my doctor said that they most likely would never subside. She said that having chronic dry mouth could set myself up for dental issues down the line. So I went off of it but am missing the pain relief, which was so sweet. She offered to prescribe amitriptyline and explained that for some people it causes fewer side effects, but everything I am reading online indicates that the side effects are far worse than with nortriptyline. I'm afraid to start yet another medication and deal with the side effects and disappointment. I'm almost ready to just accept the pain, and the limited relief that Qulipta brings, and move on.

Has anyone had a successful, side effect free experience with amitriptyline? Especially after suffering from side effects of nortriptyline? Any info is helpful.

4 years on flower and oil. Quit cold Turkey. Day 4 had an anxiety/panic attack and had to go to the hospital. Pressure sensation in the forehead/top of the head appeared. Feels like im wearing a baseball cap thats 2 sizes too small. Is there from the moment I wake up till the moment I go to bed. Going on 18 months now. Ive tried everything except medication.

Please dear god, tell me someone has found some relief? And how did you find it?

Any other cannabis triggered people here?

I've had this headache for literally every single second of my life since first grade, meaning over fifteen years, and for the longest time I never knew what it was, just that all tests came back clean. I finally discovered NDPH and I feel like the heavens have aligned. I finally have words for this, I finally know what it is. I don't even care if it's idiopathic, I'm just so happy to finally know there's a word for this and I'm not alone or imagining 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.

I’m re-trialing Candesartan because I never gave it a full trial due to side effects but curious if anyone got relief with Candesartan to just bring down the NDPH pain a little bit???

Has anyone here tried or had any luck with microdosing psilocybin? My son has been suffering with ndph for several years now. We have tried many medications where he got all of the side effects and no benefits. So far the only things that have helped him have been acupuncture, which eventually stopped working, and using a hyperbaric chamber which seems to be losing its effectiveness. I recently read about microdosing psilocybin on https://ndphaware.org/psychedelics/ so we decided to give it a try. He had his first dose .5 grams last Wednesday and he said it lowered his pain level and helped him sleep. We gave him another dose 1 gram on Saturday and the larger dose had a greater effect. Our plan is to keep going with 1 gram doses twice a week and see if he keeps benefitting from it.

Hi guys,

I just wondered what all of your experiences were with Botox?

My London based neurologist says it’s what he thinks will help me above all else.

Ironically my headaches started after a cosmetic Botox treatment. I’m honestly nervous because for each good review I’ve read I’ve also read pretty much a horror story.

I brought this up with him but was quite surprised that he basically made out there was no risk to it. Even what I flagged the negative reviews.

Any experiences would be welcome.

Regards,

George

I have severe reactions to most medications I’ve tried for NDPH. It seems like every preventative I try triggers a rally bad headache and I can’t continue it to see if its going to work for me.

Is there anyone else out there that is going through the same thing? Has anyone figured out a medication that you can tolerate?

I can tolerate tizanidine, gabapentin, zyprexa, and lorazepam but it’s not enough to control my headache.

Just tried a dose of Candesartan and got a severe headache. One dose of Vitamin D will lay me flat out for the day.

Any suggestions?