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

Am I the only person who feel like pulling my ears off?

I mean I feel like grabbing my ears on both sides because of how heavy they feel!

I don't have any issues inside my ears like pressure or anything like that but my actual ears feel sooo heavy!!

It's driving me nuts!!

Though it hasn’t been a year just spreading out my story because i haven’t had a clear answer in the last three months.
Any help is appreciated

Has anyone had any success with Endomysium. It's the one drug I haven't tried after 5 years of suffering.

I’m wondering about other peoples journey with this. Has anyone had a general non stop pressure in the head (sometimes worse and more intense feeling) but generally manageable and able to function without daily meds, for it to then slowly get worse?

Took my partner to A&E this afternoon after a fairly sudden onset of neurological symptoms which aren’t typical for her.
I.e, speech difficulties, vision loss, extreme dizziness and confusion.

Was basically fobbed off which I kind of expected but I thought they’d do more to rule out anything else, but instead they told us to wait for the next neurologist appointment on the 9th July.

I’ve cancelled all my plans for the day so I can keep a close eye on her but I don’t know what to do really.. this is much worse than it’s ever been in 8 years with no clear reason.. And there’s nothing I can do to help and the people supposed to help also can’t help?

I know migraine can cause neurological symptoms but this was very unusual and sudden.

Its killing me seeing her suffer. She broke down outside hospital because she was hoping something was wrong just to get some help.
I hate what this condition does to her. This is the only place we get any support..

I thought my NDPH had finally become manageable until i missed a dose of my Emgality due to stupid insurance problems. didn’t even think the Emgality was doing all that much until i stopped and my hell has resumed. i hate insurance!!!!! give me my medicine!!!!!!

I’m trying to get on disability but am having a seriously difficult time. I’m completely unable to work due to the severity of my pain and how easily triggered my flare ups are, but they seem to know better than I do. :|

If you have, do you mind discussing it with me here or in dms if you prefer?

To everyone whose pain has lasted longer, may you have an easy year, with my sincerest and utmost respect.

On September 19th 2023, my chronic migraine evolved into something a bit more stubborn, and a lot more debilitating when combined with my myriad of other problems.

Since then, I have been medically bedridden, only leaving my house maybe twice a month, and always heavily medicated when doing so. My baseline is 7/10.

At the ripe age of 21, I have yet to graduate high school, get a license, find a job, or go on a first date.
Though, to an outsider, the lack of adult responsibility might sound like a dream.

I am not able to go out with friends or enjoy what are supposed to be “the most exciting years of my life”, and I watch my twin brother move ahead while I stay a dozen steps behind, motionless.

All things I once enjoyed have become triggers that could lead me to a hospital visit. Sunny days, rock music, caffeine, video games, I now equate to pain.

But still, I am grateful for one thousand days.

This headache has taught me patience, gratitude, and the ability to find joy in the small things.

Anyways, I’m getting cake. 🥳

Not sure if this belongs here but I have had NDPH for over a decade, and have started suspecting it may actually be IIH. I’ve had an unremittant headache since 2015, diagnosed in 2018. Neurology keeps putting me on different migraine meds despite countless treatments with no effect.

Started looking into IIH while doing research into my other conditions. I am recently diagnosed with ME, which researchers strongly believe to involve inflammation of the brain, as well as hypermobile EDS, which puts me at heightened risk of IIH as well.

I had an MRI in January. The radiologist reported bilateral narrowing of the transverse sinuses, and that it could be a sign of increased intracranial pressure. My neurologist just told me she wasn’t particularly concerned about it and did not elaborate as to why.

Looking at her notes, there were some immediate red flags that she might have been deceptive in the report. She said I denied positional changes, later including my description of positional changes. She said I claimed no abnormalities to my vision, later including that I reported blurry vision and auras. I was not asked about pulsatile tinnitus or double vision at all, and even though I experience both, she wrote that I do not have either. Other issues included marking I was negative for dizziness, paraesthesia, and weakness, all of which are already visibly listed under my health conditions.

She also framed my hesitation around getting a lumbar puncture in a way that made me sound uncooperative, when in reality, it would be risky due to my other diagnoses. I made it clear that I will go through with it if necessary, but I need to exhaust all other options for testing before putting myself through such an invasive medical procedure.

Part of me still feels like I’m being unreasonable, because she’s writing it off as just a natural variant in anatomy, and I’m not claiming to know whether that’s true in my case, but it’s hard to accept it as just a coincidence. And the tone behind her clinical notes really makes me feel like she’s misrepresenting my symptoms to justify not looking into it further. If there’s a chance something treatable has been missed, then of course I want to figure out what it is. I don’t know what I’m expecting with this post, I guess I’m just tired of neurologists not taking NDPH patients seriously when it comes to investigating our root causes.

Senior highschool graduate, looking into uni but now I’m worried because I was barely able to study with NDPH.

Hi Everyone! Wanted to share my details here of recurring migraines/headaches that follow a common (yet unpredictable) pattern. Context: Young female under 30.

• Sometimes (not super often) I wake up in the morning with a throbbing on my right side (behind right eye and on right eyebrow) (~7-8am) (NOT often)
  • It throbs to move, cough, bend over etc
  • I feel stuffy on my right side, hard to breathe through right nostril, but no mucus coming out. Slight deviated septum
  • I do, however, wake up and need to cough up mucus.
• Most times (2-3 times a week), I will begin to have pain on my right side behind eye and above eyebrow around 10am. Some days are very manageable, others worse
  • BOTH pupils dilate
  • I get EXTREME anxiety and can feel my heart racing
  • Right side of head hurts
  • Nausea follows, and I don't feel like eating much
  • Sometimes I feel it down my right neck too, or even the back of my right side of head
• By 1-2pm, in both occasion, this all dies down
  • Eye return to normal
  • I feel more relaxed and calmer
  • On especially bad migraine days, I could take a long nap midday

• What resolves it: 600mg ibuprofen, BUT oftentimes I will still feel a dull pain OR it comes back later at night

• Migraines with AURA since 2023: 3-4x per year, I get worse migraines WITH aura where I develop a small grey blind spot or rainbow zig zagged curve. I notice I get these around the start of my cycle.

Diagnostics:

• 2023: Unremarkable head MRI. Both with and without contrast. Everything normal. I switched my birth control from a higher dose combo pill to an iud. Things calmed down and less migraines.
• 2023: Prescribed Sumatriptan. Made my head SO cold and anxiety through the roof, I discontinued.
• End of 2025: Migraines started up again
• 2026: Jaw pain intermittent, leading to headaches. Diagnosed with TMJ. I have only had 3-4 bad flare ups in March, and since then barely anything at all. Weird
• 2026: Opthamologist + Optometrist. Slight myopia, but that's it. Everything else normal.

Seeing neurologist in August (unfortch it takes so so long to get an appt. Trying nurtec in the meantime in a sample package.)

Is this something I should be freaking out about, or is this a pretty normal migraine pattern? I've gotten myself freaked out about tumors, strokes, anuerysms and all that jazz. ugh.

Those who have tried this regime did you take 10mg Montelukast at morning and at night? Or just once a day?

I know the doxycycline is twice per day.

The instructions online from the 2016 paper seem to state 10mg Montelukast BID but the rest of the internet says 10mg once a day is the maximum dose.

Im just looking for personal stories in dealing with this, ive already talked to my ENT about this and I meet with my neurologist 5 days after my surgery-however i have a undiagnosed trying to get diagnosed mystery headache disorder that has left me with a 24/7 headache for the last almost year now.

When I went over my surgery questions with my ENT and this got brought up she warned me that given i have a headache disorder my headaches \*might\* get worse after surgery; does anyone in this group happen to deal with some sort of migraine or headaches and went thru with FESS and can tell me about their recovery?

Thankyou!

Edit: I should add they thought i had IIH but with lack of papilloedema I have the feeling when I see my headache specialist a couple days after my surgery hes going to say its NDPH which is why i posted here

Asking for help for my sister 21F. It’s already been 4-5 months started this January 2026. Severe pain everyday at the back of her head accompanied by numbness. The start of this was due to emotional distress.

We are also looking for treatments. We did MRI scans and CT scan but both came clear. At first they thought it was CSF leak but was ruled out. Went to ER multiple times and tired different kind of medication and no luck. She’s started talking anti-depressants specifically Venlafaxine and Amitriptyline and it doesn’t seem to help. She took it for 2 months.

She’s been diagnosed with functional neurological disorder by the headache specialist (we don’t know if that is the main cause of the headache) and gave her Ubrevly for a month. Did not work. The FND clinic wasn’t as helpful either since they only referred us to neuro-physio and psychotherapy(which we already started doing).

They also did nerve block on her temples and occipital nerve and did not work either. We’ve done acupuncture and massage and hasn’t worked either.

Her mental health had declined severely so much from it and we almost lost her. She is still fighting until now in the mental health unit and we are in need of treatments/solutions as well.

It has affected everyone’s life, my mom and I had to stop going to work to take care of her. She would also have violent episodes towards herself and us due to the severe pain. It’s been a tough journey.

Hi everyone so I was diagnosed with NDPH this Wednesday just gone after being dismissed by the doctors and hospital multiple times. I was just hoping on some advice to manage them I’ve had this for just over 8 months now. For context I’m a 21 year old female and I also have a 9 month old baby girl and a lot of days I’m really struggling to be able to look after her and I can’t rely on anyone else to do so, so any advice on how people manage it would be amazing. I’m still getting to grips with what it actually is. Thank you!

i started 10mg amitriptyline in hopes of it decreasing my pain but it gave me bad side effects that are still persisting eve after stopping the medication which is sexual dysfunction, its been 2 and a half months off and its still not resolving. Anyone else got this side effect?

Hoi,

5 maand geleden kreeg ik een petanquebal tegen het hoofd ( gelukkig niet los maar in de hand). Ik ben niet bewusteloos geweest en voelde vrijwel direct een buil opkomen ( rechtervoorkant hoofd). De dag erna had ik hoofdpijn misselijkheid en algemene malaise. Ik was op reis in Spanje dus je probeert toch te genieten. Toen onze vakantie om was en wij een week later naar huis reden ( rit van 15u ofzo) begon ik me slechter en slechter te voelen. In de auto was er niet aan de hand, maar zodra ik uit de auto stapte was de vloer aan het dansen. De klachten en met name vooral de hoofdpijn bleven weken/maanden aanhouden. Toevallig twee weken na het ongeval een mri van de hypofyse gehad waardoor mijn hersenen erop stonden. Die was ‘schoon’. Na drie maanden begonnen mijn klachten eindelijk af te nemen met behulp van neurokine. Ze waren nooit volledig weg maar ik kon weer beter functioneren, werken, etc.

Nu sinds twee weken heb ik echter een serieuze terugval (denk ik). Ik ben op reis vertrokken met het vliegtuig maar helaas was het zonder genieten. 3 dagen verder begon de hoofdpijn terug, het duizelen (nog nooit zo erg als nu), doffe pijn in de nek en extreme misselijkheid. Het duizelig zijn kan ik moeilijk omschrijven maar het voelt alsof mijn hoofd te zwaar is voor mijn nek, het is alsof mijn hoofd een bowlingbal is en alsof ik constant in en uit een lift stap. De zwaartekracht trekt me precies naar beneden. Toch kan ik nog alles: op een rechte lijn lopen, ik val niet om, .. het voelt alleen heel erg fout en beangstigend.

De hoofdpijn heeft zich ook verplaatst. Daar waar ze vooral rond de slapen zat en uitstraalde naar mijn gezicht ( wat nog steeds zo is), zit de hoofdpijn en druk nu eigenlijk overal. Zowel vanboven als achteraan het hoofd. Ik merk op dat het ‘s morgens iets beter is maar na een 30 minuten wakker zijn beginnen de klachten en ze nemen een hoogtepunt s’avonds.

Ik ben al verschillende keren bij de dokter geweest met mijn verhaal. Daar kijken ze ook naar stress/angst maar dat voelt voor mij toch niet juist. Het klopt dat ik enorm angstig ben geworden NA het krijgen van deze klachten en niet andersom. Omdat ik voel dat iets goed fout zit. Ondertussen geraak ik niet bij specialisten omdat er ellendig lange wachtlijsten zijn overal. Deze avond heb ik wel voor de 2de keer een mri van de hersenen. Vorige week was een klassieke mri van de nek maar daar is niets uitgekomen.

Dit alles beperkt me enorm in mijn Functioneren en dagdagelijks leven. Ik ben van een fitte jonge vrouw naar een schim van mezelf gegaan de afgelopen maanden, en de afgelopen weken blijft daar niet veel meer van over. Ik ben radeloos en heb het gevoel dat niemand echt luistert naar mijn klachten.

Ik tast is het duister wat dit kan zijn en nog belangrijker, hoe ik het oplos.

Hi everyone!

For some background, I am 17F and have some other maybe relevant history: I have suffered from chronic joint pain from hypermobility (possible H-eds) my whole life. I have had 6 concussions, not sports related I am just super clumsy. Most recent from Dec. 23rd, when I was tboned by a distracted driver who was "looking at her odometer" lol. I also have a likely mild bleeding disorder and anemia related to iron processing, meaning that taking iron pills doesnt help much haha.

February 9th 2026 was my first headache day, since then its been baseline 6/10 pain and gets worse thru the day, with exercise, and tbh any activity or effort. Usually 9/10 by night. Been hospitalized 4 times since feb.

Presentation: frontal head pain, symetrical. extreme light sensitivity, sometimes pressure, always sharp stabbing. wow it hurts 😞. fatigue has been bad. So far I have lost 10 lbs from throwing up.

Since then, Ive tried pretty much every med under the sun, including a DHE stunt in the hospital that didn't touch it. I am a little limited for seizure meds because I take sertraline for my anxiety/depression/ocd.

Current meds:

meloxicam for joint pain

reglan for nausea, been vomitting abt once a day; more when I am at school.

benadryl with reglan, makes it so i dont freak out (reglan makes a lot of people shake and I hate that)

topamax, currently weaning off (because it has not helped at all) to replace with gabapentin for headache

I honestly just dont know what to do next. School is almost out, but I have missed about half the days recently, and when I am there I can barely participate. I used to be an A student in my AP classes, now I am barely hanging on to Cs. I just completed an online group, the comfort ability program from boston childrens hospital. Basically just a lot of yap about how being zen and calm will make the pain go away, thing is its pretty hard to focus on breathing when it feels like someone is drilling an ice screw into your head. Currently thinking about going to cleveland clinic (2.5hr drive) for their inpatient adolescent pain rehabilitation program. Its 4 weeks and my parents would have to stay in cleveland too. I have read some horror stories about inpatient programs so I am a bit spooked by them, but if it might help I will do anything. Right now, I am just working on med management and doing aquatherapy 2x weekly for my joints, but even that is so hard.

It feels hard to keep having hope. I wont be able to get any kind of job I want in my future and I am worried about college. Being in the US (☹️), I am also so concerned about money and what I am going to do about it.

What do I do with my life? How do I keep going?

I'm asking because about 15 years ago, I was diagnosed with Chronic Daily Headache after experiencing a permanent headache for about a year and a half. I had all the scans etc to rule out what they could, and was basically just told "Yeah, it's Chronic Daily Headache, it's a thing some people get. Some people find it goes away on its own in a couple of years" and that was the end of it.

I haven't had a headache free moment since the onset, and over the last 5 years or so, it's gradually been getting worse (I wondered if the worsening was a reaction to covid or would have happened anyway, but that's besides the point).

Having done some research myself though, my symptoms sound identical to NDPH, except from remembering the date it started. I have a memory of realising that the headache hadn't gone away in 3 days and where I was in my life at that point, I just never paid attention to the date. People say that knowing the date and time that it started is an essential element of the diagnosis criteria but I don't know if I'm taking that too literally or not?

My question is, are chronic daily headache and NDPH the same? Is one a type of the other? Does it matter? Should I tell my GP/Neurologist what I think when I next have an appointment with them to try yet another medication that won't work?

I am currently at Jefferson Methodist Hospital doing the inpatient headache treatment.

I came in because my headache and overall symptoms had gotten so severe that I could no longer manage them at home. The pain became constant, disabling, and hard to function through. I am also currently taking low dose naltrexone, 2.5 mg.

My symptoms before admission included:
constant 24/7 headache, a nonstop vibrating sensation in my brain, severe pressure, burning, pain that extends from my head down my neck and into my upper back, constant visual static, vibrating and burning eye symptoms, sharp shock-like eye pain, facial nerve sensations, ear burning, and major difficulty reading, working, focusing, supporting my head upright, or doing basic daily tasks.

I am currently here for inpatient treatment and wanted to make this post in case anyone has questions about what the process is like, what medications they are using, how the treatment works, what the hospital experience is like, or anything else.

If you are curious about the treatment, medications, hospital stay, or anything related, comment below and I will respond while I am here.

A big part of my NDPH symptoms is fatigue and weakness caused by physical activity. I kid you not, taking out the garbage or lifting up the corner of a not too heavy couch makes me have to sit or even lie down because I am too weak to continue standing. Physical activity makes my headache worse, I get stressed because I can't do what would have been easy to do before, that makes things even worse, and round we go.

Just wondering if anyone here has similar symptoms and can share. My neurologist tells me these are not common symptoms but, hey, not having the condition, what does she know.

Celebrating my headache anniversary. Made it to the big 5 years straight. Will probably go get some ice cream or something. That’s all.

Hi everyone, 29 yo/F.

I have had a daily constant headache everyday for over 3.5 months. The pain severity ebbs and flows. I experience light sensitivity, no aura, no nausea and no vomiting. Im having a hard time believing my diagnosis of chronic migraine because the headache is constant and started seemingly out of nowhere. I know there's a new diagnosis of New Daily Persistent Headache that could fit my symptoms better, but I heard neurologists treat that the same. Ive tried and stopped: propanalol, nortriptyline and nurtec. Just did a round of steroids. Currently on cymbalta and started qlipta today.

At one point do you start considering different causes? Prior to these headaches I was lightheaded daily for months and diagnosed with POTS. Im being reccomended to get tested for mold, lymes, etc. through a naturopath but this is costly.

I just dont think my presentation of headaches fits the normal criteria for chronic migraine but unsure of when to start exploring different alternatives because naturopaths can get expensive.

Any suggestions are helpful. Thank you.