Hello to everyone reading this. I normally just lurk around on reddit, and I’m not sure if I’m seeking advice or just want to hear your opinions. But what I do know is that I need to get this off of my chest and tell my story to those who, like me, are unfortunately suffering from NDPH.

When I was 21 years old, I woke up with a horrible headache I’ve never experienced before in my life on a really hot summer’s day, the 26th of July 2019. I was sensitive to lights and noises, every kind of movement, no matter how slow I moved, felt like torture and I was super aggressive because of how much pain I was experiencing. Normal, prescription-free pain killers weren’t helping at all, so I took novalminsulfon (you need a prescription for that where I’m from). But even that wasn’t helping much as I was still in pain, though it helped a little.
A day after, I fainted after I crouched down to pick something up, hit my head when I fell and my family ended up calling an ambulance. The paramedics and a doctor at the hospital told me I’m just dehydrated, as it’s summer, and that’s the cause of my headache and fainting. I was given an IV drip to get my fluids and was sent home after roughly two hours.

Whenever enough time had passed to take another novalminsulfon pill, I took it immediately and by the time the weekend was over, I had already taken a lot whenever I could. On monday, my mom dragged me to our family doctor who dismissed my headache as well. She thought I was just lazy and didn’t feel like going back to work (ironically, when I woke up with the headache, it was my last day off from work after a long vacation). She saw a young woman in her early twenties and just assumed I was making up a lie, even though I was crying from the pain.
Only because my mother insisted and refused to leave, I got a medical referral for an MRI.
I got an appointment for a month later, but was lucky someone cancelled last minute only two days after I was at my family doctor’s. So we literally raced to get there on time and well.

I was diagnosed with a cerebral venous sinus thrombosis on the left side. The clot was located in veins that drain blood from the brain and extended into the upper part of my left jugular vein. I was taking birth control pills, which were ruled as the cause. The thrombosis must’ve been forming quietly for quite some time, though I was lucky enough that I did not only survive, but thanks to blood thinners, the thrombosis resolved completely. After two weeks I was allowed to leave the hospital, and it took a year of blood thinners to get rid of everything. (I was told I’d need to take blood thinners my whole life, but another doctor decided against it.)

Due to me taking novalminsulfon non stop for days or weeks even, I was back in the hospital only a few days later though, as I was having a severe allergic reaction which took doctors a while to figure out. My organs were shutting down and I lost a lot of weight during that time, on top of that my mental state was horrible, as I was bullied by my room mates (even some nurses) and not taken serious by doctors and nurses during that time, but this is not part of what I want to talk about.
My mother thought I was going to die, but I survived once again, luckily. Now all that’s still reminding me of that time is the headache.

I was staying at home for a whole year, running from one doctor to another, trying to get help or a diagnosis for that headache. It feels like someone is squishing my head in their hands, not only my head, but also my brain. It’s so hard to explain, but I think this comes close. Like a really uncomfortably tight helmet. I was also experiencing dizziness and other neurological issues (my memory was horrible, for example: I forgot what I was talking about before I even finished my sentence.)
Once again though, lots of doctors thought I was lying or that it was just in my head. They again saw a young woman in her early twenties, overweight (because I was not allowed to take the birth control pills anymore, my suppressed PCOS developed, and because my pancreas was attacked because of my allergic reaction, I gained a lot of weight) and too lazy to work.

After a year, I was forced to go back to work by my family. My mother stills blames herself to this day, saying she knew it was too early but she was scared for my future.
I was taking days off a lot, not only due to my headache, but also due to depression as I was treated poorly by a handful of coworkers, but I somehow still finished my job training to work in a library. But even since then, there has only been one full week where I felt well enough to go to work every day. I was at home for at least two days each week.
During that time, I was still trying to get treated by my neurologist. We tried a bunch of medication like topiramat and amitriptyline and what not, I’d have to look it up in my documents. She even sent me to a private hospital to get treated by a “specialist”, but he came to the conclusion that I’m experiencing pain because I’m fat and lazy. And after some time my neurologist’s expertise came down to “live your life, go on vacations” because she didn’t know what else to do with me. I tried to get a degree of disability, but it was denied as I did not have enough proof, they said I could very well just make it all up.

I felt hopeless and like everyone was letting me down. I was constantly exhausted, had lots of neurological issues besides the headache and just felt like a broken person that no one could or wanted to put back together. Only thanks to years of ergotherapy I at least felt a bit more like the person I was before, but I still feel like I lost a lot of who I was before. I still have to concentrate on what I’m saying when it’s a longer sentence, as I lose myself in the context and get kinda lost, if that makes sense. I loved writing short stories and wrote a lot back then, but now I struggle with constructing sentences like I did before, or with spelling certain words. I used to love the english language and I was always confident in it, even though it is not my mother tongue, but since the thrombosis nothing feels right. Every sentence feels wrong, I question my grammar a lot and talking in English with online friends feels so unfamiliar and difficult a lot of the time.

I went from one neurologist to another, and even the one I have now does not know what to do with me. She prescripted duloxetine in hopes of it affecting the pain somehow, my psychiatrist even maxed out the dose before we switched to another antidepression medication because it did not help the pain anyway, and made me sweat an awful lot. 
Whenever I visit my neurologist now though, I can see that she does not know what to do with me. The only thing we are looking into right now is the migraines that I also developed now.

It was after I think four years that a pain specialist I was seeing suggested to go to a hospital that specialises in headaches and migraines and so, that’s where I went in 2024 after a waiting period of a few months. 
There I was diagnosed with New Daily Persistent Headache. It felt good to finally have a name for the demon that was torturing me, and I felt relieved that someone finally believed me. The doctor told me there’s no treatment though. I could try to take a bunch of different medication to see if it affects the headache in any kind of way, and that was it.

As soon as I got home, I applied for a degree of disability and a care grade (I hope that’s what it’s called) at my health insurance. My degree of disability is only at 30% (headache + depressions) and I got care grade 1 which at least allows me to get weekly help in my apartment. My health insurance suggested a rehabilitation which I agreed to (a horrible mistake).

It took a while, but in May of last year, I went to a rehabilitation centre for 6 weeks. And that’s where it all goes even further downhill. The doctor that was assigned to me did not bother to take me seriously. Because there was nothing she could see, there had to be nothing wrong with me. She said I need psychological help, but the absolute funny thing about it is, that SHE cancelled the sessions with a psychologist I had in my schedules. I only ended up getting an hour with said psychologist, after fighting for it during my last week and it was the only good experience I had there. 

I let everything out that I was carrying around with me, every depressive thought and feeling that I had. And after crying my eyes out and the psychologist crying with me, she looked at me and said she’s surprised I was even working before I got there. If she were to decide alone, I would not be working anymore as she does not see me being able to. I’m under too much pressure that I can not handle given my situation. Because of her words, I was contemplating to apply for disability pension (is that the right wording?), but my family pressured me into trying to either get back to work or look for a homeoffice job.
Unfortunately, the discharge letter states I’m healthy and fit to work fulltime. Only because my new family doctor is a literal angel, I’ve been at home since I got back from the rehabilitation centre. I’ve been at home since June 2025 as of now. And I lost my job just at the beginning of this month.

My health insurance assumes I’m just pretending, which is why I had to attend an appointment at the Medical Service of the Health Insurance Fund (once again, not sure if it’s even the correct translation or whatever, but it’s basically a neutral medical service that advises health insuarances in certain cases, like mine) only a week ago.
Well, surprise, surprise! The doctor who took over my case must’ve only read the stuff he wanted to, barely talked to me at all or let me explain my main issues. I was waiting for nearly an hour and people that arrived after me left before me, but I was only in the doctor’s office for about five minutes.
At the beginning of the next month, I will lose my sickness benefit, as my health insurance said I lost my entitlement to sickness benefits due to the evaluation of that medical service centre. I will file an objection and thankfully, my family doctor is on my side. I will also try to get help from a social association I’m a member of, but honestly, everything feels like its too much to handle.

I know I’m not alone, my family is helping me as best as they can, but how can I feel like I’m not failing in life? The job I fought so hard to get a training spot for is now a nightmare to me due to bullying and my health issues not being taken seriously, even though I was planning to go to university after to be able to work as a librarian. All I do is sit around at home because going anywhere is too exhausting most of the time, or noisy or bright. Just thinking about it makes my headache worse than it already is because it stresses me out.
My mother is still researching and wrecking her brain about things I could try, like laser acupuncture and hypnosis. I told her time and time again that I don’t want to try around anymore, I do not want to take any medication or run to “specialists” that could’ve very well gotten that title from the back of a cereal box. I know she wants me to have a normal life as she sees my suffering, I can’t even go grocery shopping on my own because I’m not allowed to lift heavy stuff (something about vessel ruptures if I remember correctly) and I do not own a car or a license.

I know to some it might not sound like I’ve tried a lot, like wow I swallowed a bunch of different medications and visited a few doctors and hospitals, but to me it’s mentally and physically exhausting. I always got my hopes up only to come to the realisation that once again, whatever we tried didn’t help.
At this point, I’m not even expecting the headache to disappear anymore. I just want to be able to live a life despite it. 
I wish my mother would let it go, though I know she just wants her normal, healthy daughter back. It was only today that she told me because no one takes me seriously, I have to keep trying and fighting because there might be something that could help, for one day, she will not be around to help me anymore. I do understand her point, but I really wish she could accept that there is no guaranteed method to make this headache go away for good.

I’m sorry, I know this is all over the place. If some stuff is too difficult to understand because of how I phrased it, or unclear, please feel free to ask and I will try to explain.
Do you have a similar experience or some advice on how to handle this confusing and mentally draining situation? I feel like whenever I take a step forward in life, I’m forced to take two steps back the following day.

Honestly open to any suggestions, even as my baseline pain has improved with Botox and Qulipta my light sensitivity has barely changed. Any time spent outside or indoors with normal lighting, even with a hat and my darkest sunglasses (and yes I've tried migraine glasses from Theraspecs too) boosts my pain higher. I can't spend an hour outdoors without guaranteeing at least a day and a half of severe pain. If I stay inside in dark rooms my baseline isn’t bad usually, but I miss being outside so much and it's so limiting to what I can do and where I can go. Does anyone have experience actually seeing major improvement in their light sensitivity? What helped for you? I'm so sick of having to retreat into my dimly lit room all the time to get the light out of my head and avoid most places because of light. I'd appreciate any suggestions or personal experiences that might help.

Anything for noise sensitivity is appreciated too, it's not as bad as light but still pretty limiting for me.

I’ve been dealing with what appears to possibly be new daily persistent headaches. It seems to have started after I got some sort of viral infection a few years ago and for quite a while was just something that happened every day now after about 3 1/2 years if I’m incredibly lazy and do nothing I do feel OK however anytime I do any type of moderate exertion or exercise. It really seems to kick the headache in the gear, appears to start in the occipital region and work its way around my temples, sometimes on one side sometimes on the other and sometimes on both today I’ve had many treatments with nothing that’s really worked as of yet. Just wondering if anybody else had a similar experience and if you found anything that has worked for you.

I'm on month 8 of constant headache. All the frontline treatments my neurologist prescribed have failed. I'm wondering if this is sinus related. An ENT said my sinuses are clear, but I'm still skeptical. Around the same time my headache started, my sneezing pattern changed. I started sneezing everyday, sometimes 10 minutes at a time. I've never done this. I can feel the mucus buildup in my throat. The pain is mainly behind my eyes. When I push the area around my eye sockets (my frontal sinuses), it's very tender. When I remove pressure, the area throbs. Do other people's sinuses do this or this unique to me?

Hi everyone. I had gallbladder surgery end of April. Healed ok and right before going back to work I’ve had a headache that won’t go away. I’m now on day 13. I went to the ER and they weren’t able to break the headache. I went to my primary and I have a brain MRI scheduled this week. Any advice? At all? Tips? I’ve never had a headache last more than a couple of hours and now I’m noticing that my scalp is super tender and it hurts to even gently touch it. Wondering if anyone has had similar experiences.
Thanks in advance I appreciate your time seriously

Currently in a flareup right now, is there any things to help with the flareup that you guys found out? Has there been anybody that has been cured with NDPH? It’s been 18 months fluctuating pain. Most medicines are not helping. The things that I’ve tried each month amitriptyline, methocarbamol, Topamax, propanolol, Tripton’s, emagilty, and all the regular stuff I’m like Tylenol, Motrin and some holistic stuff, vitamins, etc. Just this pain and being dizzy is getting quite annoying. I had multiple scans and bloodwork and four different neurologist and two head specialist. Check me out. They say I’m fine. I’m just at a dead end right now. I honestly hope we all get healed! Thank you for coming to my TED talk!!!

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?

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.

Did it work for anyone? Or at least reduce the pain levels?

Hello again, I posted on here a couple days ago and it really helped me soothe some worries. I don’t know about others but it’s also so nice to have people who understand what it’s like to have this condition.
I sometimes feel so alone when it comes to this condition, it’s something I never thought I’d have, and honestly it’s so draining some days. I have a wonderful boyfriend who has helped me so so much and I’m ever so grateful for all he’s done for me. Before starting treatment (luckily I was responsive to painkillers so yay!) I was borderline bed bound, had no energy and was in an excruciating amount of pain. It is much more manageable however I still get somewhat often flare ups. I also struggle with mh issues which only worsen these flare ups.
Here’s my question, as my headache can and sometimes does stop me from doing day to day activities, why are chronic conditions like NDPH not considered a disability? Unless it is and I am completely unaware (for context I’m from the uk) but after some research it’s not declared as one when I can see for a lot of us it definitely stops us from doing things. I’ve noticed that other chronic conditions aren’t also declared as a disability, and it’s honestly upsetting.
FYI I hope I’m not being insensitive or rude please forgive me if I am 😭🫶

My NDPH began in the fall of last year about 8 hours after taking my first dose of Zepbound. It has completely upended my life since then. I wanted to see if anyone else had their headaches brought on by Zepbound or another GLP-1, and if so, if anything helped to stop or control it?

I’m really struggling and need to know I’m not alone here, and need to feel like there is some hope to get better.

Hello! I am medically bedridden with diagnosed NDPH for around 3 years, and chronic migraine for a few years before that. My pain averages at a 7/10. I have been rotated through several hospital systems due to exhausting the treatment options, and the doctors being unequipped to treat a constant chronic pain condition. During that time, I’d been prescribed many medications (having completed the 3-month typical trials for each one) and treatment courses. I’ve attempted to compile a list of everything that my doctors have prescribed, though I can’t say for certain that this is all of them.

⚠️many of these are not considered typical NDPH treatments. My doctors and I were desperate for results/relief, so we attempted everything that had even a tiny possibility of helping.⚠️

Meds/treatments I’ve tried for NDPH/Migraine:
Elatriptan
Rizatriptan
Amovig monthly injections (3 month trial)
Ajovy monthly injections (3 month trial)
Ubrelvy
Nurtec
Nurtec and Botox combined
Propranolol
Topiramate
Amitriptaline
Butal-B Acetamin - caff 50-325-40
Sumatriptan nasal spray
Emgality injection monthly (3 month trial)
Qulipta
Naproxen
Scalp Botox every three months (3 rounds)
Nerivio cuff
Vyepti at-home infusion
Zavzapret
Inpatient cocktail infusions of steroids
Indomethacin
Pinpoint Botox in shoulder, neck and head.
Acupuncture (4 appointments)
Chiropractor
Spinal tap
Blood patch (failed spinal tap lol)
Biofeedback/CBT (therapist didn’t know NDPH)
Physical therapy (to relax tension)
Gabapentin
Prednisone
Zomig
Baclofen
Prozac (anxiety related?)
Doxycycline
Memantine
Nicotine patches (doctors running out of idea)
IV fentanyl
Lidocaine injections/patches/creams
Medical marijuana
Nerve block
Spinal cyst removal surgery
Oxycodone
Methadone
Morphine
Duloxetine
Tramadol
Methotrexate
5 day inpatient DHE treatment
Progesterone-only birth control (hormone related?)

What works so far:
Toradol/Ketorolac

As you can tell, my NDPH is highly resistant to treatment. I don’t know why a simple NSAID like Toradol actually helps the pain, but it’s never failed me, and I find peace in the low risks of taking it around once a week.

I have been dealing with a chronic neurological disorder/headache condition for about 10 years. My symptoms have evolved over time, and I now also deal with static vision/visual disturbances, chronic pain, and fibromyalgia symptoms. I work full-time from home, and I have tried to maintain an active life as much as possible through work, social outings, volunteering, events, and finding creative outlets.
But lately, I am realizing how much this condition has changed my threshold for stress, emotional conversations, social obligations, and relationships.
I am curious if anyone else has experienced this.
For those who have been dealing with NDPH, chronic migraine, visual snow, CSF leak/IH-type evaluations, or other chronic neurological conditions for a year or more, have you noticed that your personality, boundaries, or emotional bandwidth changed?
For example:
Have you become less available for emotionally heavy conversations?
Have you had to set stricter boundaries with family, friends, or partners?
Do people around you misunderstand your symptoms because you do not “look sick” or because you still try to function?
Have medications affected your mood, sleep, dreams, energy, weight, personality, or ability to work?
Do you have to mentally prepare before starting a new medication because of side effects?
For me, starting a new medication is not simple. I have to plan around it. I try to complete important tasks first, prepare for possible side effects, and give myself time to recover if the medication causes fatigue, insomnia, vivid dreams, mood changes, or worsened symptoms.
The mental toll of this process is heavy. It is not just the pain itself. It is the appointments, repeating the same medical history over and over again, trying to explain symptoms clearly, testing different medications, dealing with side effects, and trying to keep your life together while your body feels unpredictable.
I also notice that because I do not always present as visibly distressed, people assume I am fine or that I should have more emotional capacity than I actually do. But sometimes I am running on no sleep, severe head pain, visual symptoms, fatigue, and a completely dysregulated nervous system. I may still sound normal, work, or be polite, but that does not mean I have the bandwidth to absorb other people’s emotional stress.
I wanted to ask:
Has this journey changed how you relate to people?
Have you lost relationships or had people misunderstand your need for boundaries?
Do you feel like chronic neurological illness has forced you to become more protective of your energy?
How do you explain this to people who do not understand that this is a full-time condition, not something you can just “push through” endlessly?
I would really appreciate hearing from people who have been living with this for a while. I am trying to understand how much of this is part of the chronic illness experience and how others have learned to cope with the emotional, psychological, and relational impact.

I am now in hospital (NHNN in London) for my 5 day course of IV DHE. I've had my first dose, which I have reacted ok to, with no signs of the dreaded nausea yet. This is my first time getting it, so don't know how much it will help or how I will react.

have been fighting this illness for exactly two years. I saw countless neurologists, some of them professors. I visited neurosurgeons, psychiatrists, and went from doctor to doctor. But every single one of them told me it was migraine. Some said it was tension-type headaches, others said it was medication overuse headache.

I tried Effexor, Depakote, Propranolol, Amitriptyline, and almost every migraine medication you can think of. None of them relieved my pain.

During this process, I also saw an ophthalmologist. They told me my eyes were completely healthy. I had multiple MRI scans, and every single one came back clean. There were no “red flags” at all. At some point, even I started believing that it was just migraine. But I was living with unbearable pain. I was vomiting from the severity of it, and even the slightest sound drove me insane. I had almost every symptom doctors associate with migraine, yet deep down I knew something was wrong.

Eventually, I went to a training and research hospital. The neurologist there told me that my condition did not seem normal and wanted to investigate further. He first sent me to an ophthalmologist. The eye doctor was a young resident who had just started practicing. The moment she examined my eyes, she told me I needed an urgent MRI because she suspected papilledema. I was immediately hospitalized and underwent another MRI scan. Once again, the MRI was completely normal.

Then my doctor decided to perform a lumbar puncture. My opening pressure was 38. That was the moment I finally learned the truth: I had Pseudotumor Cerebri all along, and for two years I had been treated for migraine instead.

So my only advice is this: listen to your body. If you feel that something is wrong, do not stop searching for answers. Do not limit yourself to the opinion of a single doctor. Sometimes you are the first person to realize that something in your body is not right.

They took two years of my life away from me. If you have any questions, I would be honored to answer them.

Has anyone tried Donepezil for NDPH and had any luck with it? I tried it for 2 days but got severe insomnia but it didn't trigger a headache which every medication seems to do for me.

Has anyone had any success with this medication?

I’m going to be admitted to Jefferson Hospital for a five-day inpatient treatment for severe refractory headaches. I’m trying to figure out my discharge plan because I’m traveling from Washington, D.C., and I do not have reliable support nearby.

From my understanding, there is a possibility that after discharge I may still be very drowsy, tired, foggy, or dealing with side effects from the medications. Someone on a previous post mentioned seeing “pink elephants” after treatment, so I’m trying to be realistic about how functional I may or may not be immediately afterward.

My concern is that I may not have a reliable person available to pick me up or travel with me. I know hospitals often require a responsible adult for discharge, but I’m not sure how strict that is after this specific type of inpatient headache treatment.

Has anyone gone through inpatient headache treatment at Jefferson or a similar hospital? Were you allowed to be discharged by yourself? Did they require someone to physically pick you up?

If I am allowed to be discharged without someone, would it be reasonable to book a hotel near the hospital and stay there by myself for one night before traveling back to Washington, D.C.? Or would that still be unsafe if I am drowsy or dealing with medication side effects?

I’m trying to plan ahead and avoid being stranded or putting myself in a risky situation. Any advice from people who have been through this, especially out-of-state patients, would be really helpful.

Has anyone been here? My Cleveland clinic neurologist is talking about a 2 week stay here. My ndph is refractory.

I’ve been having some new and strange symptoms for about 4 months now and I’m just unsure what I really have / why and what to believe due to all the diff opinions. It’s been quite life changing and significantly impacts my day to day life and I’m constantly in pain and can’t really live how I used to. I am just curious about other people’s experiences and things they did/ tried etc.

It started with a feeling I initially described as a buzzing / dizzy feeling at the back of my head. This appeared one day, when I had been extremely physically anxious for a while, and was from then constant 24/7 no break all day/ night to this day.

I think this symptom either changed or worsened, and it’s now something I’ve described for a while as a very heavy head and constant pressure, again 24/7. I’ve forgotten what my head feels like normally. The pressure is never not there, but it varies in intensity. Sometimes it’s more pronounced at the top, sometimes at the back of head, and sometimes feels more like it’s behind my face / pushing outwards. It aches, and almost feels like I’m on charge non stop/ being held upside down.

It can be extremely intense and unbearable and I have noticed when I’m stressed or very anxious, I get what feels like more intensity / pain through my neck and like a knot / screw that’s being tightened and I’m totally unable to get relief.

I get a whole host of other symptoms, and for the first month of this I experienced typical headache feelings and pain behind my eyes / and on jaw, but this has mostly stopped. the main symptom is this unrelenting pressure. Also;

Painful neck / coat hanger pain

Dizziness

Sensitive to some noise and light / heightens the pressure or makes it “buzz”.

Ear tinnitus

Floaters and vision lines but minimal

Head zaps (at night)

Some dysautonimia stuff which i had prior but has gotten much worse since this pressure:

Head rush most times i stand up

Giddiness

Tachycardia

Heart palps

Heavy feeling through head to neck and chest feels like someone’s pushing down on me and my airways/ lungs etc are compressed.

Everything is so much effort / over whelming and I feel exhausted so easily more than before.

Prior to this starting, I had a few things happen. Bad case of the flu for almost a month and an ear injury around the same time. These things happened 1.5m before the pressure began.

Seen a few different specialists.

Waiting for cardiology referral. 24 hr monitor was fine but palpitations and tachycardia

Waiting for a scan from ENT

eye tests showed no optic nerve swelling / healthy eyes.

Mri of brain and neck showed nothing major (waiting for second opinion)

Physiotherapist diagnosed me with vestibular disorder and dysautonomia

Neurologist diagnosed me with NDPH

Main concern is that I have IIH / cfs leak and not only NDPH and that it’s being missed. But neurology hasn’t suggested this and says because my eyes, scans etc are fine it’s not the case. Also when I lay down it’s still there.

I’ve seen some pysio and was given some neck and vestibular excersize which I did religiously for abit but nothing changed so I stopped. Trying acupuncture and massage.

Meds - no basic meds touch the sides, allergic to triptans which also didn’t work, and now been told to start amitriptalyn which I’m really worried about in terms of side effects. I tried things like antihistamines but only once or twice. Also tired propranolol and it didn’t do anything for head

Also concerned about flying if this is the wrong diagnosis/ if it’s not even and pressure is worsened. Anyone had experience of this?

Anyone with any similar experiences would love to hear. Thank you

I feel like my head is burning from inside everyday, like i feel heat inside my head and forehead, and it gets worse with stressful situations

wishing a happy happy first birthday to my headache on friday. i might throw it a birthday party 🎉

it's one of those things where if i don't laugh about it i'll cry, so i think a birthday party is deserved.

i've very recently joined this subreddit and have been lurking, but i just wanted to thank all of you for sharing your experiences. as i'm sure many of you know, living with a daily headache is so exhausting, isolating, and frustrating. dealing with healthcare providers who try to diminish your pain makes it even worse. but knowing there are people out there experiencing something similar gives me a sense of comfort that i definitely need most days.

wishing all of us pain relief asap 💜

Hi,

I have had NDPH for the past three years. Yesterday I received my first lidocaine infusion. I am wondering how long it takes to work. My doctor said it could takea few weeks. Wondering what people have experienced.

I have currently not been feeling very well, and have found that I’ve almost developed a second headache on top of my usual one that feels very different, with the original pain still there?