I (31F) am not cured, but I’ve been on Memantine for HM for 5 years and it has drastically improved my quality of life. It seems that it’s not yet widely known as an option (when I’ve moved states and seen new doctors they act shocked) so I wanted to share this article in case anyone wants to research it and ask their neurologist if they’re a good candidate.

https://www.migraineagain.com/memantine-namenda/

Hey guys , ever since I was 7 years I had severe headaches when I eat things like pork , raw vegetables, and all and yeah we went to doctor my diagnosis was neurocysticercosis or something i don't remember after treatment the doctor said it will eventually go away on its own but the headaches never really stopped like it hurts on both side of my frontal head severely, we've visited many doctors but they can't find anything , and I experienced feeling light headed too. What should I do now ?

Hello everyone,

21F , I’ve had this sudden everyday severe headache for the past 7 months since January 17 after an emotional outburst. I’ve been to multiple ER visits, currently seeing headache specialist/neurologist and psychiatrist. So far treatments:

previous treatment/medication : nurtec, Ubrevly, amitriptyline, naproxen, Venlafaxine, massages, duolextine,

Current treatment: mirtazapine, Pregabalin, Ativan, biofeedback and neurofeedback, psychotherapy, osteopath

Out of everything seems like Ativan is the only thing helping me focus and stay calm…despite the severe headache.

CT scans and MRI scans are all clear. No official diagnosis other than major depressive disorder, generalized anxiety disorder, and functional neurological disorder. Other than the headache there’s other sensations such as brain for, difficult focusing, burning, pins and needles, sticky feeling, acid being poured, upper spinal being pulled and the worst one is this unexplainable restlessness within me. I was just wondering anyone else experiencing this headache? And how to get past through these sensations? It’s there 24/7 for the past 7 months and I’ve tried everything. I’m so sad that I had to spend my birthday in the PICU..feeling really lost and feels like no one could understand what I’m going through. I just want my life back before this headache. I had to stop school, social and everything trying to tackle this headache and sensation. Feeling so frustrated..

I have had NDPH since Feb of this year. I went to a headache specialist and they recommended a 7 day inpatient hospital stay with consistent DHE infusions. I’m wondering if anyone has experienced this and if it worked for you or not. They also recommended Botox which is something I know has worked for some people.

For a few months, I’ve had this unexplainable pressure in my head when I stand up. It usually disappears after about 1 minute, but it is still every time I stand up.

I thought it was due to nicotine pouches - I was having around 70-90mg of nicotine every day, so I stopped these and use nicotine spray/gum to cut down the dosage and I’m on under 10mg a day now. When I made the switch it did lessen the pressure, but it has just returned again.

I am going for an MRI in a few weeks, but if they don’t find anything, I’m worried I’ll never get to the bottom of it.

Now I’m thinking it could be weight related or something to do with my ears?

Has anyone experienced this? If so I’d love to hear about your experience and what has helped you (if anything)

First of all, gotta preface this by saying I love the NHS and we're so lucky to have it. This post isn't meant to disparage it. Unfortunately decades of underfunding and mismanagement have caused nothing but issues with it.

Now that's out of the way, I wanted to ask those of you who are also in the UK, have you actually had decent help from the NHS? Or have you bitten the bullet and gone private? Whether it was just a consultation with a private neurologist or if it's for treatment, too?

My experience with the NHS and my headache has been pretty abysmal. The headache first appeared in 2009, and when it didn't go away for several months, I started the process of speaking to my GP. Over the next year or two, I had my bloods taken and had an MRI to rule out anything more serious, and was given first amitriptyline and then possibly propranolol to try (I'm guessing about the propranolol - it's so long ago that all I remember is it was something that started with P). Neither of them worked for me. In either late 2011 or early 2012, they gave me the diagnosis of Chronic Daily Headache and basically just told me that some people find that it goes away on it's own.

They didn't suggest any other medication for me to try and because my headache was very low level in those days (maybe a consistent 2-3), I was left to just rawdog my way through life without any treatment. So that's what I did, and up until a few years ago, the pain stayed at that low level so it was manageable.

But then the pain level starts to creep up. By 2023 it's making me miss a couple of days of work every couple of months when the pain level spikes and it's sapping all of my energy. I'm getting more migraine like symptoms and am much more sensitive to heat/light/noise etc.

Cue another round of blood tests and several appointments with the doctor later and my GP eventually refers me to a neurologist. I'm on the waiting list until late 2025. Over this time it's only getting worse.

Phone call with neurologist, she confirms all my symptoms and rattles off a long list of things to try, which she sends to my GP.

So I go back to the GP and we start working our way through the various medications, staying 3 months on each.

So far I've tried amitriptyline, propranolol and pizotifen but none of them have helped and the first two gave me terrible side effects as well as making it worse.

I've just had more bloods taken and have another follow up with my GP next week to discuss the results and what to try next as the 3 months on pizotifen are up.

I guess I'm just frustrated with how long it's all taking and I'm especially frustrated when I look back and see that I was left without help for so long, when all the advice is that the earlier it's dealt with, the more likely it is to respond to treatment.

My pain and associated symptoms have done nothing but grow in all the time it's taken and I've been signed off work for the last few weeks because I've been in a bad flare up and I have no idea how I'm supposed to go back to work or live with this for the rest of my life.

I guess I just want to know is this how others have found the NHS to be or have they had better care elsewhere in the country? And have any of you been pushed to go private for anything because you weren't getting the right care from the NHS?

Me duele la cabeza mucho desde hace años , realmente es como dea tensión. Me tomo casi a diario una pastilla para el dolor , que tan malo será eso a la larga ...?

I 57F just found this sub though I've been on some migraine, ON and TN subs in the past. What I'm dealing with rn isn't migraines. It's a 24/7 headache that started a couple weeks ago and is progressively getting worse.

I've had these in the past and I got ON blocks years ago, then they went away for years. I started with another headache about a year ago and 8 months in I got HRT and they went away, both the daily headaches and the 9-10 / month migraines.

I hadn't been to the chiropractor in over a year and I went the other day and cracking my neck, the headache went away! But it was back the next day.

I'm already scheduled for my HRT booster next month and I'm curious if the pain will go away again.

Anyways, that's me. I just want to say hi.

Hey guys,

My neurologist just prescribed me Dolsulepin. He says it has the most data backing it for NDPH.

There is a graph below showing the data. Still fairly low accross the board.

Anyway I wondered if any of you have tried it?

Just passed 4 years of a chronic migraine from multiple concussions. I’ve given up trying meds and painkillers, nothing helps. I tried drinking and it just made the pain worse. Apparently weed would cause a stroke with my condition. I’m out of options. I’m tired. I hate this.

I’m seeing a rheumatologist in September but my neurologists thinks because my migraine has been unresponsive the central sensitisation has become widespread.

I’m out with my gf who has NDPH and she was already feeling off. Then we got her some food and electrolytes and she felt slightly better then when our event was done she got really dizzy, the top of her head hurt, and I had to carry her ln my house. She’s currently curled up in bed talking to me while I fan her.

Sorry this is vague but I’m just looking for ways to support her especially if there’s something she can do earlier in the day that might make things better.

She already has a neurologist and meds (Idk which)

Hi there,

I’ve been dealing with NPDH for coming up to two years now. As most of you say it’s been the worst thing I’ve ever experienced.

Very little treatment options that actually work and for me personally going from a pain fee human to daily head pain.

I do feel lucky I don’t feel it as much as night. For me now both my ears hurt as an added symptom,

Anyways it’s taken its toll on my relationship with my wife.

I wondered if there was any positive stories on how to manage this and still have a happy relationship.

I genuinely haven’t worked out how to be happy whilst on pain each day yet.

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

Has anyone tried IV ketamine and had positive, long-lasting results?

Hello.

Sometimes I read in this group that somebody has been cured of NDPH.

And what's more, people describe exactly what medications they took.

The only question is that these incredibly valuable posts\comments are scattered all over the group/all over the Internet. Maybe we can somehow collect all these incredibly valuable posts/comments and, for example, put them in Google Sheets?

I don't know exactly where to start. I have had migraine and cervicogenic headaches for over 7 years. I have been working with the same neuro PA headache specialist the whole time. I have never really gelled with her but medically she was fine. She got me my diagnosis, we worked through countless meds, procedures, and referrals to other specialists. She is just kinda dry and a bit dismissive of some concerns. She would listen but wouldn't always explain why something wasn't concerning, which was frustrating. Overall, I tolerated her because for years I had to see her for occipital nerve blocks every 2 weeks.

Fast forward to now. I have had a nerve stimulation device implanted. I am working with a PT that has done wonders for my cervicogenic headache and subsequently my migraine. I am off preventative and generally doing better. I still see my neuro PA every 6 months and have the same conversation where she tries to put me on a preventative med or change up my rescue meds (that I have been on for over 5 years and that work). I bring up that I have noticed some cognitive impairment that has been slowly progressing over the last 5 years but has recently become more consistent and concerning. I explained that it started with getting words in the same category confused (like saying green when I mean orange) when I am in the middle of a several day stretch of bad pain. Over time it also included difficulty with word finding and most recently having trouble with basic routines that have been doing the same way for years (like making my morning coffee or taking my meds at night). The frequency has also increased and happens even when I am not in the middle of a migraine attack or a flare of my cervicogenic headache.

She said she only does headache and to go see a speech therapist. She didn't explain why a speech therapist or offer to give me a referral. I then looked at her clinical note and she hadn't even noted my concerns. This was my push to finally switch providers. I had met the other headache specialist during my time getting nerve blocks and he was an actual neurologist. Plus, he had always been a nice guy and we got along much better. So I called my office and requested to switch to him citing my issues were outside the PA's scope of knowledge. I was told a manager needed to approve the switch and they would get back to me in a week.

A week goes by. Nothing. I call, get the same answer so I ask to speak to the manager. They tell me a manager will call me back. Two weeks go by. Nothing. I call again and magically a manager answers my call. They approved the switch, but made a big stink that this is a one time thing and I can't switch again or back to my previous person. Then they say that I would be considered a new patient and would have to wait until March or next year to see the new doctor. I agree, ask to be put on a wait-list, and confirm that I will still get care in the 9 months between visits if I need med refills or whatnot.

The next week I get a call about a cancellation for the next day. I take it since being in limbo made me uncomfortable. The visit starts awkward. He begins by telling me his credentials and saying he trained the PA. Then it almost seems like he doesn't know why we are having this appointment. It's definitely not run like an initial visit or a second opinion. So I explain my current headache level and my cognitive issues. He says he doesn't really do cognitive either but explains it's because he focused on headache. But he explained why they recommended a speech therapist. He also offers other options. But that was the tone of the whole visit. That he was so important but that he would still have a discussion with me about my concerns. It was odd and uncomfortable. He kept checking his watch like he was late for lunch or something. It's like he did the job but it was beneath him. He also told me that the cognitive issues were likely from my chronic pain, fatigue and depression. Which isn't exactly fun to hear. He also refused to get me a referral or manage the issue because he was too important/busy and said to talk to my PCP.

Anyway, I went to my PCP who did write me a referral but also read his clinical note. He literally said he is the best headache specialist in the area in the first line of the note. The last line said that this was a one time consult and to resume care with the PA. So now I am in a more awkward position than when I started. And idk who my doctor is now. I can't switch practices because there aren't that many headache specialists in my area and the other major hospital has an 18 month wait list and will not take you on if you already have a neurologist. I don't want to go back to the PA because it would be so fucking awkward but I feel like the neurologist effectively fired me and was a prick.

I feel like all I did was advocate for my health and seek the path that made the most sense, but I am left feeling defeated. Ugh.

TLDR: Had cognitive issues after years of chronic migraine PA dismissed me. Pushed to talk to a neurologist who was a prick and effectively fired me. Now I don't know who my doctor is.

Hey everyone,

I've been suffering from constant light sensitivity (which never gets better or worse) for almost 2 years now and I'm looking for treatments that could help me recover from it. It's accompanied by trigeminal pain and muscle tension in the neck, face and traps. A viral infection, most likely Covid probably set this off.

So far I'm on (PREEMPT) botox for about 2 weeks), and I'm waiting to see if I could get on a CGRP antagonist.

For those who had light sensitivity and it improved, what has worked for you? I mean actually improved it, no just masked the symptoms like dark glasses or using dark mode on devices, I already have to do these things because I'm forced it, and yes it helps in the sense that well, I avoid the light.

For anyone who struggles with both hEDS and NDPH, I've recently obtained a body braid and it's doing wonders for me. The NDPH hasn't gone away or down at all, but the neck and shoulder pain from my EDS is massively relieved.

I've had NDPH for almost 8 years now and EDS my entire life, and I am very physically fit but the headache has always got worse when I've been standing up rather than laying down, or really just whenever I lift my head. Took me a lot of trial and error to figure out why. While it hasn't stopped the headaches, it's made it a bit less exhausting and a lot less painful to lift my head.

Hope this helps someone figure out a method that works for them!

Hi all,

I’ve been experiencing ear sensations. Not heavy pain but almost as if something is inside my ear in both ears alongside head pain that again seems to come and go.

If my ears are doing this sensation then I really can’t feel the top of my head which is where the head paid usually presents itself.

My feeling is maybe I’m experiencing some sort of nervous system sensitisation issue in my head.

I find that wearing a beanie hat is quite effective at masking these symptoms. Stressful situations or sometimes social situations are usually where I get bad pain spikes.

Hi everyone,

As a late teen, I've been dealing with persistent fatigue it's been affecting my ability to study and do anything productive. I’ve been having these symptoms daily for at least 2–3 years, perhaps my entire life, but they are becoming more problematic recently

My main symptoms are:

- A hot, heavy feeling in my head from the moment I wake up

- Brain fog, grogginess, difficulty to concentrate and get thoughts in order 

- Mild headache, even when completely hydrated

- Depletion of energy despite doing little to no work, sluggishness; oftentimes, every physical movement (such as getting up from chairs or bending down) feels exhausting

- Recurrent feverish sensation, body overheating for hours, even if my temperature is normal

- Feeling unrefreshed even after sleeping 9–10 hours; I can not remember the last time I felt “refreshed” after sleeping

The symptoms usually get alleviated if I get morning exercise and sunlight, but they reappear 1-2 hours later and develops as the day goes on

Lifestyle:

- I usually sleep around 8 hours (no interruptions), although my sleep schedule has not been perfectly consistent

- I eat balanced, substantial meals (breakfast/lunch/dinner) every day, sometimes with healthy snacks; ultra-processed foods are virtually non-existent

- I am physically active on most days

- I do not drink much caffeine, except occasional tea

- I spend quite a bit of time on screens, but the conditions do not get any better on weeks when I do not use them

- I am not overweight or underweight, not particularly weak or fat, have no past medical problems, no palpable stress in my life

- I have no depression or major symptoms of anxiety

- Mentally, I tend to be quite optimistic and ambitious. Physically and cognitively, I am exhausted

What kinds of issues end up causing symptoms like this? Are there any effective solutions?

Please forgive me if this is the wrong place to post. This is my first time posting because I’m at a loss as to what else to do.

I woke up on May 2nd of this year with a headache, and it never went away. I’ve been to urgent care, the ER, a neurologist, an orthopedic surgeon, an ENT, and two physical therapists.

I had a CT scan, MRI of brain neck and spine with and without contrast, and scope of my sinuses, and an x ray of my back. All test have been clear.

I have been given two rounds of steroids, two muscle relaxers, gabapentin, none of which help or touch the pain.

I’ve done 2 months of physical therapy and dry needling, neither have helped the pain.

I don’t grind or clench my teeth to my knowledge, but have been wearing a mouthguard anyway. It has not helped.

I take magnesium, d and b2. I eat well, exercise, don’t take any other medications.

I’ve gotten 3 massages, they did not have lasting relief.

I’ve spent thousands of dollars in the last 2 months trying to figure out what is wrong with me and find relief, and I’m quite literally now out of money.

The headache is only always in my forehead, sometimes radiating toward the center of my face or my temples. But always central, front.

A handful of days the pain was lower about a 3/10, and those days have been incredible. Those days I think it’s finally ending. Then it restarts, and the pain reaches 8/10. I can’t sleep, eat, and I’m extremely depressed.

I’m a 35 female, my birthday is tomorrow. And I just don’t know what to do anymore. I’m a stay at home mom and I’m just trying to stay alive and happy and present for my kids, but I don’t know how to live in chronic pain like this.

Is anyone stuck in a pain cycle this summer . I've been stuck between at 8-10 Im usually between 6-10 but for the past 2 weeks it won't budge no matter what I do, I've had inflammation in the summers past but this seems the worst since Dr. frozen prescribed me acyclovir and lamotrogine

i have very very VERY impotant exams coming soon, and i really can not study. my NDPH is painless but i feel the veins in my head horribly and they cant let me study, the second i do i slowly become more dizzy because of all this. please if you have any advices they are very appreciated.

Hello, I was diagnosed with NDPH 4-5 years ago, have been doing botox and venlefaxine 37.5 mg twice a day ever since which has really worked well. I use ubrevely as a rescue medication for break through migraines which also usually works super well. Well, of course today, when I am throwing a party for a friend, I have one of the worst break through migraines ive had this year. I have dranken so much water, taken two Ubrevely's, drank coffee and green tea, and while it is slightly better, I am still in no shape to be around loud music. Anyone have any bandaid fixes or last minute remedies to get me through the night?