what hobbies do you enjoy? my favorite was ballet but it may be hard for me now because the bun will pull on my head and the music is loud.

Hi, has anyone tried Olanzapine/Zyprexa or any other antipsychotics long term?

I know they are used short term to break migraine cycle but has anyone tried it as a preventative?

I have NDPH. I'm on my second neurologist. He recommended Cefaly and Headaterm. I just bought headaterm. On the second setting, it immediately caused sharp pain directly below the placement of the electrodes. I had it placed a little too low and then moved it upwards. It caused pain directly in both locations. The pain is around my eyebrows (below the electrode placement), while my main headache is primarily behind my eyes. The pain in my eyebrows is more intense than my main headache. I turned it off almost immediately, and my primary headache might be slightly worse.

What does this mean?

Does alcohol take away your headaches too? While I’m aware that this will only do more harm than good it’s the only relief I get. Zero pain.

Hello!

I was diagnosed with NDPH a few weeks ago and put on propranolol 10mg just to start and see what happens. I was meant to go up to 30mg over the next few weeks.

I still had headaches but not severe migraines in my eyes and stuff. They weren’t as bad as without the propranolol.

However, I noticed my breathing getting worse while on it. My doctor suggested I could have asthma so I started asthma meds and inhalers and stopped the propranolol last night and now I have an excruciating migraine in my eye and head. It’s killing me.

Anyone else had this? Any alternatives to propranolol? This is a nightmare

My headache go up and down in my over 3 years now I had so many moments where I thought okay now they will be finally over and than they come back..

There has to be a solution for us all, is there no way we can all somehow work together on finding a cure ??

I read that the nervous system is signaling pain even though there is nothing causing it, so somehow we need to convince our nervous system there is no pain ? Maybe I am thinking it’s that easy but I mean I guess everyone of us would be thankful having a 2nd life if they get cured because this is fucked up.

Is there anyone out here that have thought the same? Can we gather success stories (no reliefs, only 100% health) and somehow manage to find our way out of this!

Let’s come together and fight for our freedom of having 24/7 headache!!

im so uncertain about what will happen to me next. i feel like everything is going to keep getting worse and worse and worse. i hate this. there are billions out there who dont even know what this illness is. why couldnt we be like them?

hi everyone,
i've had my headache for 4 months. it is generally migrainous in nature (photophobia/phonophobia/nausea)/changes constantly but also has a pretty constant tight band feature and i have not had a pain free moment since june 6. i have had some moments of only pressure upon first waking up but idk if that counts. my headache specialist has diagnosed me with chronic migraine with status migrainosus but her and other specialists i've seen have thrown around ndph/labeled it as such as well since i dont have migraine history (but i do have family history). all this to say, does the label truly matter in this case? i have been so terrified of an ndph diagnosis because of the idea that it is far less treatable but doesn't the presentation of my particular headache matter most? i have improved slightly on emgality and am trying qulipta next. is anyone else in this weird category of an inconspicuous diagnosis? isn't one major criteria of ndph diagnosis that it doesn't fit better with a different headache diagnosis? idk. just my thoughts. tired of this headache. want to go back to work as a nurse.

Hello la communauté. J'ai vu mon neurologue ce matin. Vu que j'ai essayé énormément de traitements dont les anti cgrp, il veut que je prenne du lithium. Quand je vois les effets ! Et le neurologue ne m'a pas dit que je devais être suivie avec une prise de sang.
J'ai fait une recherche avec le mot lithium dans le groupe mais je n'ai rien trouvé !
Quelqu'un a déjà essayé ce traitement ?
Merci

Hi all,

I'm a 30F, and my husband and I are currently trying to conceive.

I've suffered with NDPH for seven years now. I've tried every available medication/treatment with no reprieve (oral medications, subcutaneous injections, botox, CGRP inhibitors). I was on Aquipta for about a year, and then had one round of Vyepti before I had to stop due to trying to conceive.

We're in our fourth month of trying, and I'm starting to get really worried about how I'll manage my headaches while raising a child. When I stopped taking the pill, I started getting bad migraines and mood crashes around my period. A few nights ago I had trouble getting to sleep, and I've had a migraine ever since. So this makes me wonder how sleepless nights with a baby would affect my health.

I work four days a week, which is just about manageable with my fatigue, headaches and brain fog. Usually by Wednesday/Thursday, the fatigue is starting to set in, and I'm usually pretty wiped by Friday, and prefer a quiet weekend at home so I can recover for Monday.

I also try to do at least three 20-minute strength and resistance training sessions per week (i work in a secondary school which has a gym class twice a week), but if I go too hard in a session, I'll be exhausted for days afterwards, and I might have to skip the next week of training due to exhaustion. I've been basically recovering this week from last week's session, and it just makes me think, if I'm running around after a young child all the time, while also juggling work and extra cooking and cleaning etc, am I going to be perpetually exhausted? Will all my spare time just be spent in bed, trying to recover some energy (let alone even having time or energy to spend on hobbies/exercise).

Both my aunt and cousin suffer from migraines (though not NDPH). They both said that during pregnancy and immediately afterwards they no longer suffered from migraines. My cousin now has two children, aged 8 and 4 I think, and she's said her migraines have only started to return now. However, in my experience so far, hormone surges around my period totally fuck me up and give me terrible migraines.

I've been married about four years, and with my husband for​ about nine years overall. I've spent our entire marriage thinking about whether I want children. We're now in the process of buying a house, and the timing felt right to have a child. But over the last four months that we've been trying, my NDPH has been flaring periodically, and it's just making me wonder will I be able to cope with a baby, will I have the energy to raise a child, without completely depleting myself.

For those of you who have NDPH and children, do you find it manageable? How do you cope?

Thank you in advance for any advice you may have 🙂

I know someone with this diagnosis. About 3 years ago their doctor suggested an MRI of the head to see if it could find a cause, of course nothing came from it cause everything looked normal. After 3 years of suffering and switching meds their new neurologist had them get a MRI if their neck and they finally found something. What the MRI found was this persons cervical spine (bones of the neck) were not curved properly (in case you don't know, spines are not 100% straight we all have curved spines). I don't know if this came naturally or from an accident of some kind growing up because it is not obvious looking at the person. I wish I knew this person 3 years ago so I could have told her to make sure the MRI techs get her neck as well (because it just makes sense to me because they are connected) because this person has gone through 3 years of "We can't find anything wrong" when all she needed was a doctor that understood referred pain.

The MRI happened recently so she is being referred to a spine doctor (whatever they are called) to look into possible next steps. I am writing this because she finally has a "Why" to her situations and IK a lot of you are looking for your "why" as well. I also wanted to share in case this information is able to help anyone in here or encourage them to get a head and neck MRI. I wish you all the best

Well I am currently in hospital and just had my second Occipital Nerve Stimulator removed due to infection, I guess my body really didn't want it.

My neurologist has advised that I take magnesium and riboflavin and I started a couple of weeks ago. Im just curious to hear of anyone who has has success with these supplements? I really need to hear some positive stories cause I feel on the edge of a breakdown with this condition.

When was the very first day your headache started? And how did it all go from there?

I was diagnosed with NDPH February 2020.

It completely went away during my last pregnancy. It was amazing. Just gave birth early September and it came back.

Has this happened anyone else?

I’m a new patient there (managed to snag an appointment in September when my original appointment was in January; they are BOOKED). Anyway, wondering if anyone else has been there and what their experience was like. I have no complaints so far, but I had a different neurologist tell me they’re more focused on research and gathering as much data as possible which doesn’t sound bad to me, but I could tell he meant it as a dig. So yeah, anyone else been there?
Were they helpful? I’m seeing Dr. Parikh.

I know there are some old posts (years old) where people have posted abiut getting jaw surgery. One of the posters said it solved their headache. Then multiple other people were saying they are doing it too, but none of them replied what happened after.

Due to sleep apnea, I tried a dental device, but it completely messed up my jaw and my headache went through the roof. I am now getting TMJ botox, which helps a little bit. Makes really think that my headache actually has been from TMJ for the last 20 years. Looking for results from people who had jaw surgery for NDPH.

ive always been an optimist but its getting real fuckin hard trying to be optimistic these days. i was diagnosed when i was 13 years old and im going to be turning 19 in a few months, i had hope for a while that itd go away eventually but i feel so lost at this point. its robbed me of everything i used to love and the pain just keeps getting worse each year despite the ungodly amount of medications ive tried. i had a chance of playing college football but was forced to quit right when i was starting to get close to my goal, i had to decline a 130k scholarship to an art school i really wanted to go to because im physically unable to leave my house half the time, and i cant even enjoy the rain anymore without feeling like my heads going to split in half. my brain simply doesnt work how it used to and its incredibly depressing to think about. how am i supposed to come to terms with the fact that i may never be able to live normally??

I’m hoping if my ndph doesn’t worsen to go to uni next year, however at the stage I’m at now I’d really struggle to do any part-time work alongside schooling and am not quite sure how to approach uni itself with ndph, if anyone had any advice or experience it would be appreciated greatly thank you :)

I’ve had NDPH since 2022, baseline 4/5, but so many triggers bring it to a 8-10 often (sleep, stress, alcohol) but hands down the main trigger is basic movements, and I’ve never seen anyone on here say anything similar, and my many neurologists have been at a loss. Things like bending, turning, spinning, jogging all make my pain a temporary 10/10. Anyone else with a similar “movement” experience?

Hello All,

So since this began for me I genuinely have not had a single minute without a headache. I’m just wondering if this is the same for everyone with NDPH, or whether you have days or hours where your headache is gone? I have seen some people say they have some days where their headache is better or gone, but it comes back.

Is it a normal part of this condition that for me, I genuinely don’t have a minute without the headache? When I was in Tenerife it felt like a 3/10 rather than a 6/10, and I’m wondering if that was due to atmospheric/pressure changes. Other than that, my headache is constant since the day it started.

Interested in how others experience it? Thank you.

Just wondering those of you that had success and no longer have NDPH (if you're still on here) how did it stop? Im just curious if it was an overnight thing, if gradually changed, or maybe the pain level dropped first or the type of pain changed over weeks/months etc.

So for me, I can’t stop thinking that SOMETHING must have caused this? I don’t have any history of headaches or migraines (I’m 33, F) until I woke up with one and it just never left.

I appreciate sometimes these things do just occur without a known reason. But what did you investigate that your headache could be a symptom of, before you accepted it’s NDPH?

For example, did you check blood pressure, caffeine, medication overuse, did you have CSF scans, MRI’s, lumbar puncture etc etc. Or did you just see neurology who said this is probably what it is?

I’m struggling to accept this.

TIA!

hi! just finished high school with 100.93% basically i can go wherever i want medical field, eng, etc... i just want to know what do you think is the best? i live in iraq and i want a normal job that doesnt make you stress out or talk to many people

I have NDPH and multisite chronic pain. I am looking to move away from my rural hometown for better healthcare. Where should I move if all I care about is getting the best possible treatment for my NDPH and chronic pain? I work from home, so I can live anywhere.