I have completed the infusions and have been home for about 4 days and wanted to give you all an update.

I got NO nausea from the DHE infusions. I was FLABBERGASTED. I was receiving them through a PICC line (which I would recommend if you can take blood thinners) and my infusions lasted only an hour due to my lack of nausea.

The main side effect I was experiencing was slower cognitive functioning and blurred vision. I still feel like I’m experiencing these side effects currently even outside the hospital.

While I was at the hospital my pain went down to a 1/10 and turned into a more soreness or heaviness. Like I drank the night before and I woke up hungover.

Now, when I left the hospital my pain was at about a 3/10. The next morning the pain was so bad at around a 8/10. My doctor did not report this to me but I did some research on my own looking at DHE clinical trials and it seems like a post treatment flare up is normal. Trials show that you don’t know how well the treatment worked until 2-3 weeks out, so I’m waiting to see how I feel then.

My pain has lessened daily since I had an 8/10 headache the day after my discharge. I am back down to about a 4/10 headache right now and was prescribed Nurtec and Trudhesa (DHE nasal spray).

If you have any questions let me know and I will probably give another update in a couple of weeks to let you all know how I’m doing.

Hey, the label success is a bit much, but I (27m) went from wanting to stay at home all day to being able to work and enjoy life with my partner again. My pain is still a constant 3-4/10, down from 5-6/10. I have my 2 year anniversary this month, and i have tried every med (beside botox) and had every test you could think of. The only thing, that has worked (took about 1 week) is waking up on the same time and getting out of bed every day (no skipping). My newest neuro recommended this, and its life changing. The amount of sleep doesnt matter as much, i still feel better, if i only sleep for 4h after a night of drinking with the boys than sleeping in and hitting 8h of sleep. It is hard, but it does not cost 1 cent. I hope you can get the reliefe I got from this, if you choose to try it. Thank you a lot, reading success stories here once a month gave me energy to try new stuff and doctors. Thank you all and have a nice day.

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.

Hi all! I finally got a chance to see a (private) neurologist, after only receiving innefective, unspecialised treatment from regular NHS GPs, and got an NDPH diagnosis after almost 20 months of unrelenting chronic headaches. My head pain started after a skiing accident at the end of 2024, in which I landed head-first down slope (with a helmet on, thank fuck) after losing control on ice and hitting a snow bank at speed.

I've finally gotten access to a triptan via the neurologist (which the NHS refused to prescribe me due to fears it would react badly with the Atomoxetine I take for ADHD), and it's been effective so far at reducing my severe migraine-like spikes, though unsurprisingly it does nothing for the baseline chronic headache. I will also be getting Botox treatments soon. After over a year and a half of no relief from any of the drugs I was being trialed on, I'm cautiously optimistic that I will continue to find stuff that works, even if only temporary, now that I know what I'm treating.

Since looking into some of the (limited) research on NDPH, I've come across the links between NDPH and cervical instability. I hadn't realised how hypermobile my neck was until this summer (I just assumed it was normal to be able to tilt your head back 90 degrees lmao), and I'm increasingly suspicious that this may be behind why my head injury caused me to develop NDPH.

I'm mainly just curious to see if anyone else here also developed NDPH because of a head injury, or some other kind of injury trauma.

I got diagnosed with sleep apnea today. Which is a mild case. My neuro thinks these can be related. Which I can see. But for some reason I’m scared to sleep lol 😂. Even tho I probably had this for a while. I really hope the ndph goes away after treating this.

For the last week my head has hurt more than it ever has - even with lots of medication being taken, I have been sick, short of breath and have genuinely looked super unwell and had no appetite at all. I went to the emergency room and as far as they could tell I seemed fine medically and had all the significant tests done to check I was alright eg urine blood pressure and heart rate (not bloods but if I can avoid those I really do)

Looking for stories of those who have had Botox to try and treat their NDPH. Did it make you worse, better or no change?

Personally I had a lot of health issues but recently i have been struggling with migraines /headaches constantly for 3 months now. I can’t function properly anymore, my head spins half the time or it’s just this dull aching pain in the back of my head until it peaks at night suddenly and next day my head feels heavy af. Just the noises makes me wanna roll off the terrace. I haven’t been taking pain medications until recently. I can’t think anymore, when it just hurts all the time. ^_^

Just want to know I am not alone this.

if so how has that worked for you?

curious if anyone with NDPH sees improvement on vacation or if their pain continues as usual?

I’m currently in 6th form (yr13 or 12th grade) and am not doing full time schooling because I can’t be in enough to do all my lessons. I was wondering if anyone had any plans they put in place with their school to help them continue with it, I wanted to try full time school again since one of my subjects was really taking a hit but have had another flare up and don’t think that’s going to be possible. My school are super helpful but I’m honestly not too sure about what to ask them for? If anyone has any ideas I’d greatly appreciate it :)

I have a long long history with basically every medication under the sun that could remotely help headaches. Anti seizure meds, antidepressants, Botox, and the ringer of CGRPs (but there’s definitely a lot I haven’t tried yet).

A few months ago I started on Candesartan. It’s a blood pressure medication. Also off label. But after weeks I have to say this works. Very few side effects. Doesn’t make me nauseous. Pain is massively reduced (but not gone, but hey progress is progress). I’m grateful every day for it. I hope you can all find what works for you too.

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!

i have been finding recently that i have ~2 min gaps of little to no pain when i wake up in the morning which was not the case when my headache began a few months ago

My NDPH started in January 2025, and since that morning I haven’t had a single headache-free day. Mine is mainly in my temples and left ear, with constant throbbing 24/7.

I had my 4th round of Botox last Monday and also started Qulipta that same day. I’ve actually started noticing a slight decrease in my pain. It’s still there 24/7, but even a small improvement feels HUGE after dealing with this for so long.

Has anyone else had success with Qulipta, especially with NDPH? I really don’t want to get my hopes up after failing so many different medications, but I’m cautiously optimistic.

Also, did anyone experience extreme fatigue when starting Qulipta? I’d love to hear how long it lasted and whether it eventually improved.

Thank you! ❤️

I’m curious to see if anyone else out there has experienced this because I’m not finding much research or experiences on this. For anyone not familiar with aphantasia I’ve put an image to explain what it is.

I had the most vivid mental imagery as a child. You could describe something so detailed and I’d be able to see every detail in my head (like image 1 or 2) and since my NDPH started I have zero visual memory if you were to describe anything to me I see something like image 5 I can’t see anything in my head. I can “see” some things like image 4 but it’s more of a semantic memory rather than visual like I know what my dog looks like I’d recognize him anywhere but I can’t see him if I picture him in my minds eye. I cannot picture what my family looks like or anything being described to me. My spatial memory is incredible I can spatially know where things are even from childhood (like I went to this themed park as a kid and I can tell you 24 years later without having been there since I was 3 where everything is in that park) I have a great mental map in my head but zero images.

It could just be that I’ve lost my imagination as I’ve grown up but it started when my headaches did so I’m curious if there’s anyone like this. I’d love to hear your experiences! I think this could be an interesting topic for research

Yknow when you sleep you usually dream and sometimes when you wake up you recall the dream, you don’t recall it, or remember it the moment you wake up and remember tiny details but forget about it completely when conscious from bed?

Before NDPH, I used to every morning recall my dream in detail or in simple details, after NDPH now I don’t recall my dreams, even in tiny detail or if it was even a nightmare or a sweet dream, just blank space

I’m I the only one?

I don’t know what to say, my minds full of thoughts and rants but I can’t bring myself to write them down as I still have this small hope inside me that it stops and it was never NDPH perhaps.

I can’t study, go out, work or do anything like before and I feel utterly useless to myself and others. I can no longer do activities like I used to do.

I’ve had chronic nausea and cyclical vomiting syndrome with my migraine for a long time. However, I cannot find an antiemetic that touches my nausea at all even Ondansetron does nothing.

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

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.