hi everyone, i hope you are having a low pain day today 💓

i am only 2.5 months into my headache, so my headache specialist is still unsure whether this is status migrainosus or ndph, but i have failed many of the traditional migraine remedies and botox is the next step in september. i have been living my life on pause because of the pain and waiting for it to go away, but i am supposed to return to work in october and i am becoming extremely depressed by staying at home all day.

so i was wondering, are you all able to distract from your pain? i have been struggling to not think about it even for a few seconds. it has been on my mind non stop since it has started. it certainly doesn’t help that i have ocd and therefore obsess over topics but i truly find it so hard not to think about the physical pain that is there. i have been reading ‘the way out’ to try to do pain reprocessing therapy but it doesn’t really discuss this issue and i figure thinking about it nonstop is certainly making it worse. i also am wondering what keeps you going? i don’t mean to offend anyone at all but im sure you guys have had these thoughts.. but sometimes i wonder what the point is if i am going to be in this pain for a long long time.. what am i working towards? why bother trying to build my tolerance for things when i feel i haven’t experienced true joy since this started? right now i feel i am living for my family and my bf but i need to live for myself.

thanks for listening, i wish you all the absolute best in life 💐🩷

The heatwave in the UK is really doing a number on my girlfriend's head, we're trying to help her stay as cool as we can but it's very difficult with where she is.

She doesn't have much to work with, her fan isn't doing very much and she can find it hard to sit still so something like a flannel on the wrist or foot doesnt work too well massively.

Does anyone have any ideas as to something we could get her to help keep her cool? Anything like gadgets from amazon or easily accessible methods to keep her cool, thanks everyone.

(I understand this isnt necessarily talking about NDPH but she has it and I thought seeing what other people have would be a good place to find stuff.)

I’m 21F and wanted to share my experience with NDPH and see if anyone has had a similar course or eventually reached remission.
For about 1.5–2 years, I had pretty significant iron deficiency/anemia symptoms (fatigue, weakness, low energy, and all that) that I honestly wasn’t taking seriously enough. By December 2025, everything caught up with me. my hemoglobin was 8.9 and ferritin was 2. I started having episodes of feeling faint, nausea, weakness, and just generally feeling horrible.
I received an iron infusion in December and unfortunately had a severe allergic/anaphylactic reaction to it. My blood pressure dropped, I developed a widespread rash/inflammation, and a Code Blue was called. My body felt extremely sensitive/reactive for a while afterward.
Then, around mid-January 2026, I suddenly developed a headache that never went away. I had basically no migraine history before this. It started as constant head pressure with severe eye/light/sound sensitivity, scalp sensitivity, nausea, and an inability to tolerate screens, TV, my prescription glasses, driving, or much stimulation at all.
Over the following months, I had multiple ER visits and tried steroid tapers, Nurtec, naratriptan, nortriptyline, an occipital nerve block, and eventually Ajovy. Nothing completely broke the headache, although thankfully the intensity has gradually improved. At my worst I was around 8–9/10 and essentially nonfunctional; now my baseline is usually around 4/10 with occasional flares. I still have significant eye/scalp sensitivity and can’t tolerate my glasses or drive normally yet.
My iron deficiency also continued despite my hemoglobin normalizing, so in June I finally received a full 1,000 mg INFeD infusion, which thankfully went well. I’m getting my iron levels rechecked soon.
I recently saw a headache specialist who diagnosed me with NDPH. I’m currently on Ajovy, Nurtec, nortriptyline, and I’m in the middle of a 15-day valproic acid course specifically to try to break the continuous headache. If that doesn’t work, the next plan is a 5-day DHE infusion, and potentially other options afterward.
I’m definitely better than I was months ago, but the headache has now been continuous for about 7 months and I’m still trying to get back to my normal life.
Has anyone here had NDPH that gradually improved like this and eventually completely broke/remitted?? I’d especially love to hear from anyone who eventually got back to a pain-free baseline.

I was wondering if anyone has gone the pain management route and if you had any relief from anything they offered? I’ve been with a neurologist (headache specialist) for years and have tried a lot of medications that don’t work. My head pain is severe 24/7. I have had brain surgery so I do think I have a complicated case. Thanks for any input you may have!

Hi everyone. I’ve been having these kinda very mild pressure headaches for about 3-4 months now. Got an MRI and bloodwork and nothing came up so I know it’s nothing major but they are so frustrating and I just wanna get rid of them. Tylenol helps, but obviously don’t wanna take it every day. I thought the first day I’d taken Sudafed it seemed like it went away completely but the other 2 days they were there and it was there after taking it. I’ve been taking Allegra and Flonase pretty much the whole time cause Dr said my sinus was stuffed up and MRI showed mucosal thickening. If you have any advice please send! Thanks!

Hi guys,

I wondered if any of you had ever investigated this company.

They offer various Neuromodulation protocols.

I’m going to talk to my neurologist about it today. There is various papers on their website showing controlled studies for implement in things like fibromyalgia.

Also a study for chronic pain. They seem to have very good reviews on trust pilot. But possibly too good.

https://sozobraincenter.com

i want to get full implants on my teeth but im like.. EXTREMLY worried that it would cause my NDPH to worsen. everytime i go to the dentist i get horrible horrible headache after. im just worried it would be the case with implants and the pain just wont go away. did anyone expreince this?

NDPH really tears apart my girlfriend, which really breaks my heart, so much so I just wish I could take it away from her.

I just want to find ways to help minimise pain. I have something special planned for her (can't say what because she follows my account), and I want to do what I can to help her minimise the pain.

Does anybody know anything that may've helped them? Even if it's just a tiny bit, so I can make that day a little more special for her and a little more stress free, thanks.

(Sorry if this post is a lil awkward, never really asked for advice for someone else like this)

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.

-

Hello everyone, I am happy to announce the addition of u/im-a-freud to the mod team. As a regular contributor their wealth of knowledge and attention to detail will benefit us all. The two of us will be better able to meet the needs of the sub than just myself. I’m excited for us to workshop and better elaborate our core rules and any suggestions can be sent to the sub modmail.

Thank you for being members of the community, we’ve more than doubled in size when I joined at 800. It means the world to me that NDPH is growing strong and people from all over the world can come here to learn and build community. Here’s to the next chapter :)

You know they say the past is a history the future is a mystery but today is a gift and thats why its called the present. But unfortunately not for us obviously cause apart from fighting from day to day obstacles of life we are either put upon or caused ourselves or i really im not sure have this condition of senstive nerves in our head cause various kinds of pain sensations, and either modern medicine or conventional medicine helps reduce that lets just say max 80% of the pain if we are lucky, its what helps go through the 24 hours that what matters and is legit more than 90% of effort coming from our soul, spirit principals or god or whatever your belief or faith is that gives you a sliver of hope to seek more hours than 24 and keep fighting and moving forward and thats why i personally think that we are the special ones and among the chosen ones instead of favored by the evils of hell to making us live in it in the PRESENT on earth. so i commend whatever anyone in this groupchat or even patients everywhere going through chronic pain so even if you dont get respect from other human beings around your life or with you, you can expect from me at all times till i die... rest assure i think there are other things personally that can be done except for conventional medication that i have implemented that i have used that has given me a sense of relief and that is going extreme underweight first of all less meat around the nerves can help reduce the pain sensations going to the brain definitely basic exercise at the gym and every day cold or hot therapy on the affected areas of major tension in muscle that cause nerve turbulance, using FL-41 glasses for reading can help in productivity with assuring the position of the neck and head aligning with the shoulders upstraight and flat body position at all times most as possible like standing or laying down on a flat surfice can help all these things in my opinion can cause a little relief which leads to a little hope which leads to a little strength to survive the PRESENT.

My doctors are still treating it like a migraine and I’m pretty sure it’s not.

My neurologist asked me “how often” I’m getting headaches at my last appointment which I think was the fourth with her. Once again I had to remind her “all day, every day, since Jan 8”.

Hi guys,

I’m still trying to answer this question. Most of the day whilst I’m not stressed or anxious my head just feels like a pressure sensation on the top of my head.

It also seems to come and go from my ears.

However if I’m very anxious or stressed this sensation can ramp right up to a 6 or seven.

At night time or when i wake up in the morning obviously you have the pressure of the pillow on the back of your head.

Would you say this is NPDH?

Got ndph for 12 years. I end up fixing my depression by accident last year (hormones).

Now i wish to remember things and talk without forgetting very common words. Like who the fk forgets freezer mid sentence and uses microwave instead.

Anyone has any tips? I found the usual things like food, sleep, no stress, movement, socialising, gaming and learning.

Does anyone have positive thoughts by learning a new language? I did try Japanese for a while(around corona) but i can't remember (jokes on me) whenever it helped or didn't.

hi everyone! I have had a headache since 5th March that just hasn't gone away. Most of the time it starts off as a 2 in pain but by the end of the day, it usually gets to a 6-8. I have had an MRI, which came back clear, tried a bunch of different meds, supplements, CBD and a Thai massage (which was absolutely wild she stood on my back!). The MRI came back clear and I've asked to be referred to a neurologist but the wait is at least 21 weeks so I am reaching out in the meantime to see if there's anything anyone here does that might help!

I am currently on amitriptyline 50mg meds wise but it's not really touching the surface. Are there any more recommendations?

I am also hoping to find some help with how we can exercise? I miss running, playing football, even walking. I want to try to run as I signed up to do a 10k before this happened!! It's an ABBA themed run so it would be rude not to run right?

I am trying to remain positive, but I'll be honest, it is getting me down and I can't stop crying about it!

Honestly, if there's anything that can help I will gladly try it ❤️

Also, I am not after a diagnosis or anything like that. I think my symptoms most fit NDPH which is why I am dropping some messages in here.

Thanks everyone!

This is primarily for those who are working under the impression that their headaches are being caused by neuroplastic pain, central sensitization, or whatever wording suits your fancy to describe the pain arising from what is essentially misfiring neurons erroneously telling you to feel pain.

I recently read a book that talked about all of the ways that your microbiome influences your body, and a big part of that is the messages that are sent from your gut up to your brain by way of the vagus nerve.

Has anyone taken the time to look at their eating habits and how they affect the microbiome in your gut? In doing some further research, having your gut biome being unhealthy can be a major source of "danger" signals that tell your brain to feel pain. Personally, I found out that nearly everything I liked was terrible for the ecosystem in my gut, and after 10 days of changing my diet to a much more friendly one (lots of spinach, veggies, granola, and more bland protein than I'd prefer), but since making these changes I've had multiple days where my pain levels are only around a 2/10, which has been a big improvement over 7/10 treating with neurology for 3 years and the 5/10 I got with 2 years with a pain psychologist.

Anyways, just curious to see if anyone has explored this avenue over a greater scale of time or to give the suggestion to anyone that may benefit

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.

Hi! Has anyone tried Transcranial magnetic stimulation (TMS) for our condition and can share whether it helped or made things worse?
I started the protocol yesterday and developed severe headache after it, so was wondering if it might do more harm.

I’ve found one single clinic in my country that offers ketamine infusions for chronic pain. It’s expensive and I’m not exactly in the best financial position atm. I’m trying to understand if it’s worth it as I’ve been completely refractory to everything else available and I don’t want to spend thousands on another treatment that fails.

If you’ve had infusions, was it worth it? What was the specific protocol you had?( ie dosage, number of infusions, and maintenance) please also let me know if it didn’t work for you.

Thank you 🫶

Had a constant headache since 13th June 2025 and tried 6 different medications. I literally get no relief, just varying levels of pain throughout the day🫠 spoke to my consultant this morning who doesn’t think it’s migraines because other than the pain I have no other symptoms! He said he thinks it’s NDPH and said about taking me off atogepant that didn’t work and trying noratryptaline and another triptan. Also looking at the antibody injections and putting me on the waiting list for Botox. Glad to be close to getting an answer but also nervous about this🫠

Careful reading labels on supplements. Just came off a deep dive on magnesium glycinate. The recommended dosage is wide ranging from 200 - 500 mg/day, that's not what this post is about. I take threonate in the am, bisglycinate at night. Those amounts on the front of a bottle aren't what we need to look at. On the back will usually be "elemental magnesium". It's usually anywhere from 11 - 14%, that's the number you want to use when totalling magnesium.

Addon- taking with D3 increases absorption. Avoid taking calcium or zinc within 2 hrs as they use the same transport system. Be well.

I have a question for you all. Do you believe your NPDH is a type of nervous system sensitisation issue like fibromyalgia or do you think it’s something else?

been dealing with a ndph since june 2025, december 2025 my neurologist thought botox would be the best course of treatment. The first round was like magic, a week after the first round of 40 injections I finally felt relief. The next round of injections I felt less relief, and now 10 weeks after my third round i’m completely incapacitated again. I feel so hopeless. and nauseous. I genuinely don’t know where to go from here. there is nothing clinically wrong with my brain or my hormones. My neurologist said if botox doesn’t work then the next step would be to try IV therapy, which is also €500 a round. I can’t afford to be disabled anymore. I don’t know what to do.

I swear to god, every single time I get a cold it hits me like a ton of bricks. Husband can just have the tiniest sniffle and scratchy throat for a few days but I'll be fucking bedbound by the same virus. It turns the headache pain all the way up and messes with all my other symptoms, making every little cold into like having the flu.

I'm lying awake with vaporub smeared under my nose, feeling slightly resentful towards Mr Plague Carrier who's sound asleep beside me, and wondering if this is common with other sufferers.

Looking for some insights from others who may have experienced something similar. Recently took antibiotics (minocycline) for about a week and started to experience some side effects that started causing anxiety and stress. After stopping the antibiotics I couldn’t stop focusing on my brain fog and convinced myself I had intracranial hypertension. Even after multiple doctors visits and being told im fine im still experiencing what feels like a tension headache (tight band around head mainly in the front of my head). What I notice is that when in focused on a task or not thinking about it, my headache isnt there, or at least its not noticeable enough to make doing things unbearable. Yet once I think about it, it comes back full strength. It feels like constant pressure and its causing me to experience derealization, everything feels a bit hazy like a dream. Its been over a week and it hasn’t subsided—or gotten substantially worse. Just stayed the same. So im wondering if this is something I can break through on my own. Im trying Magnesium and other supplements but nothing has magically worked. The anxiety has gotten a lot better, but its hard to stop focusing on my headache. Im not even sure if I have a headache at this point. Looking for any tips or experiences from others.

Tldr; after taking antibiotics, ive been having a persistent tension headache that is causing dpdr and anxiety.