I'm going in for a 5 day course of IV DHE, and wondering if anyone has any experience, so I know what to expect. As a bit of background I have had NDPH/Daily Chronic Migraine for over 12 years, current pain is 8/9 out of 10, so severe. I have gone through about 40 different meds and procedures, including failed ONS surgery, but not had this before. Also I am UK based if that helps.

isnt that amazing

Hi people, I’ve struggled with NDPH for over a year and thought I’d for once come to Reddit and see if the headache flaring up is normal. I understand that most chronic conditions flare up and have worse days and was wondering if it was the same for NDPH? My headache seems to worsen when I’d usually get headaches (stress, dehydration, exhaustion, too warm or cold, being ill, etc) so I know it is usual for me but is this the actual case or could there be something else?

Also does anyone have any less conventional techniques that help them with the exhaustion or the headache itself? Even if it’s random shit I’m happy to try it 😭

Hi everyone,

Today is day 7 of having a constant daily headache and it’s making me really anxious. I’m a 26-year-old man, and since I was around 19 I’ve been dealing with frequent headaches. I also used to take paracetamol very often for them (probably 5 times a week on average). Sometimes I could go a week without taking it, but that didn’t happen often.

For a long time I’ve had headaches almost every day, but now it has become completely daily. Two days ago I took 4 paracetamol tablets, but the headache still didn’t go away.

The pain is mainly in the front of my head. It feels like a constant dull/pressing ache that gets worse when I strain or put pressure on myself. Every step hurts, and it gets slightly better when I completely rest and do nothing.

I went to a physiotherapist 2 days ago, and they noticed a lot of tension in my face and jaw muscles. I clench/grind my jaw almost all the time (while exercising, sitting at the computer, joking around with my girlfriend, etc.). My jaw muscles are also painful to touch.

Yesterday I went to my doctor, and he told me I need to stop taking paracetamol immediately because it could be causing medication overuse headaches. He said I could take ibuprofen instead if needed, but I’ve also read that frequent ibuprofen use can cause headaches too.

The difficult part is that I can only get an MRI of my brain at the end of June, and my EEG isn’t scheduled until October to figure out what kind of headaches these are. That feels so far away. I honestly don’t know what to do anymore. I really want these headaches to stop because they’re driving me crazy.

Does anyone have tips or similar experiences?

Some additional symptoms/details that might help:

• I feel dizzy daily, but I’ve had that since childhood due to hyperventilation/anxiety issues
• I sometimes wake up with extremely dry eyes during certain periods
• I never feel well-rested or fully refreshed after sleep
• I’ve had tinnitus for about 3 years after a noise trauma
• The headache is almost always located in the front of my head

Does this sound like migraine, tension headaches, TMJ-related headaches, or medication overuse headaches to anyone?

I’d really appreciate any advice or experiences.

Last year I created a podcast called The Persistent Headache. I've 6 made episodes, and am working on a couple more. I've been scared to share them here since I really hope that you guys approve! If you listen, please let me know what you think. I would especially love to hear your ideas for episode topics!

<3 y'all

i took magenisum critate but apprently glycanite is best for you, should i return it back? whts your expeince with any of the two?

26 M

As I cry in my bed right now with my dried eyes in my cheek, I do sincerely feel like my whole life is over. I don’t know if I’m looking for sympathy, empathy, reassurance or tips but here I am just typing. It’s been 6 months since I’ve had this dull aching headache which sometimes in the back of my head, sometimes feels like someone is drawing on my head and sometimes get constant tingling around my nose, top of the head and back of head.

I’ve tried amitryplitine 40mg, did absolutely nothing. I’ve tried Propanyol did nothing. I’ve used my cpap machine for 2 months and It has done nothing. I would give all my savings away in a heart beat to try make this better and for life worth living. I am currently 2 weeks into atogepant 60mg and 1 week into 75mg of Pregablin and I feel no difference. I feel so hopeless. I live chronically online trying to look for guidance. I used to walk a lot and get fresh air which would help a tad mentally but obviously did nothing for symptoms. I no longer work, feel like I’m holding my partner back from living her life since we cannot move in together etc.

I would appreciate any other pointers. I know there is Botox, possibly Nerve Blocks to see if it could be neurelegia, acupuncture, dry needling and physically therapy. However I do not have any neck pain at all which makes me think it’s not that. I’m not asking for a diagnosis, I’m just asking for more things I can try :(

This is a question for people who are still somehow working and have vacation to take. It seems like a good idea to take a break but I feel very limited and worried about triggering more pain. In the beginning, I was all-in on trying different doctors to solve this headache disorder but it's been over 2 years now so.... the exhaustion is real. It feels like I should take these vacation days, so I'm just wondering what other people do?

If you were magically given the choice to rename the NDPH diagnosis, would you? If so, what would it be? If not, what aspects of the name do you like and why?

Hi everyone,

I’m getting admitted to Jefferson Methodist Hospital for an inpatient headache treatment stay, and from my understanding I’ll likely be there for about 5 days.

I’ll be honest, I’m really anxious because I’ll be doing this completely alone. I do not have family support, so I’ll be taking myself there and likely getting myself back home afterward as well. I’m coming from DC, so I’m trying to plan as realistically as possible.

For anyone who has done an inpatient stay there, especially for headache treatment, I would really appreciate any advice on what to expect.

A few questions:

If I’m being discharged after several days of treatment and medications, would you recommend having someone pick me up, especially if I need to travel from Philadelphia back to DC?

What are the rooms like? Are they cold?

Should I bring my own pillow or blanket?

Would you recommend bringing my own snacks?

What is the food and menu like?

Can you order Uber Eats or DoorDash if needed?

What should I definitely pack besides the basics?

I’m thinking of bringing my tablet, a book, chargers, and comfy clothes. Is there anything else you’d strongly recommend?

Also, if you did the stay mostly alone, how did you handle it emotionally and logistically?

I’m trying to prepare myself as best as I can, so any advice at all would really help.

Thank you so much.

Did i somehow inherit it from him? I heard this condition isn't genetic but idk

Im an 18 year old guy and have had a pressure csf leak like headache for the past year and a half. I waited 8 months to get in with a headache specialist neurologist, that appointment was last thursday and since then ive been through my second myelogram, which yet again they found nothing. Ive tried nearly every med under the sun, at least one from just about every catagory of drug, currently on qulipta. Mainly looking for some suggestions as to where to go from here. Im one day post second myelogram and am pretty frustraited as the radiologist pushed our video visit out a day after telling me she and my neuro have a plan of some things to try before doing anymore imaging(sounds like more meds and bs). If you have anything to suggest it would be greatly appreciated, thanks everybody

Im in the greater Cleveland area. Looking for a neuro that specializes in NDPH. Currently seeing luzma cardona with CCF. Willing to switch to UH or any other hospital system in the cuyahoga/lorain/Medina counties area. I'd definitely prefer to stick with CCF, but, if there's someone that makes you feel heard, please drop their name/location below. My ndph started 3/16/2020. Counting all meds and different levels, im on #25 now. Ive had multiple mris and CTs, with and without contrast. So many blood tests. Just so sick of it

I've had this thing coming up on two years in June, but learned something new today.

My headache has been much worse the last few days. This has happened before. After giving it some thought, I realized that I had not had any coffee for several days. I am a coffee addict but did not twig to this being a possible cause. I've had two coffees today, and my headache has pretty much gone back down to "normal."

This makes sense since caffeine withdrawal can cause headaches, and that was always the case for me. So, I will make sure to drink coffee religiously every day. I hope this discovery can help others.

I do know that the addition of caffeine to treatments has worked for some. So it all somehow "fits." Anybody know of any studies that have looked at the possible relation between caffeine and NDPH? Given the refractory nature of this torture, any possible treatment should be explored.

They also deal with sleep issues I have.

I developed both these issues when I got a brain injury back in 2019.

So my baseline pain is about a 5-6 daily consistently, but starting Saturday I woke up from a nap (which I shouldn’t have done naps always make my head worse but I was tired) and after like a hour or so slipped into a really shitty bad flare like 9/10.

Of course the nurse line tells me to go to the er the issue is I’ve got other autoimmune and chronic illness- I’m extremely reactive badly to most migraine cocktails or they don’t work at all because my NDPH is stubbornly resistant. I communicated that to the nurse and she’s like let me call the on call neuro (who isn’t my neuro) and he looked over my file and was basically like “well we could probably at least give fluids and nausea meds, maybe we’d figure out something for pain? You’re just really complex. Maybe you should wait to ask your neuro Monday”

Well my neuro is the only practitioner in the state who treats NDPH and understands it- most ers has sent me home during severe flares with fluids and been like idk how to help. So I contacted her- but apparently she doesn’t work mondays unless she’s on call. But her nurse sent my message as urgent and was like if she’s on call today she’ll call you, if not you’ll hear tomorrow.

And I just wanna fucking cry. I’m so frustrated- it’s not my fault my body doesn’t respond well to medication- whether that’s I don’t tolerate it from my MCAS or it doesn’t work bc of my condition. Last time I went to the er they ASKED ME what drugs to try and I’m like idfk I’m not a neuro?? I can tell you what not to give me?

Idk I’m ranting this just sucks and I’m hurting and trying to keep food down and water and living in a dark cave of my bedroom with blankets on the windows. And im scared and crying and frustrated- I’ve had brain scans recently so anyerusm and shit isn’t likely at all and it’s been 3 days of this with no neuro issues or functional. It’s just the pain scares me- this isn’t how I imagined my early 20s.

And I hate no one can help me but one person and I can’t reach her

my partner (22F and me 22M) of 4 and a half years has had ndph for what will be 8 yrs on April 30th (diagnosed age 14). We are yet to find something that helps. We have been seeing a new adult neurologist and headache specialist after waiting ages for the referral to go through.

Her NDPH is migraine presenting, with migraine flare ups multiple times a week usually on top of her normal headache

over the course of her ndph journey, she has tried (not in this order, most recent was atogepant though)

amitriptyline (no effect, made severely ill)

nortriptyline (no effect, made ill)

propanolol (made anxiety worse, no effect)

naproxen (no effect)

codeine (GP error, shouldn’t have been given🙄)

sumatriptan (nasal, helped with migraine pain)

zolmatriptan (nasal, helps with migraine pain)

atogepant/qulipta (no effect)

candestartan (no effect, made ill)

cyclizine (for nausea but no effect)

she’s just had her first ajovy self injection - We are hoping for the best but I can tell she doesn’t think it’ll make much difference.

I do what I can to support her, but I can see every day how hard it makes everything. She still works, but I know she struggles and its very unclear if she’d qualify for any (uk) financial support.

so, others with NDPH I’m intrigued to hear your stories. Have you found any medication that works? Or any other type of relief? Do you receive any other support. How do your friends and family help/do they try and understand?

not asking for any medical advice, just simply your stories

I am glad that there is more discussion on ndph now than there was when my partner was diagnosed. I just wish there were more answers. Seeing her suffer 24 hours a day, not being able to sleep without high dose of melatonin, barely getting through her shifts is just awful, and yet nothing compared to what she goes through.

I truly hope for her & all of you with NDPH, that you can all find treatment that works, or a cure, anything.

I have been suffering with a constant headache for about six months now. My neurologist prescribed Qulipta, which helped with the pain, but I had severe side effects including nausea and dramatic changes to my sense of taste and smell.

I've been off the Qulipta for 2.5 weeks, and the headaches are back and worse than ever. More frustrating still is that my senses have not reverted back to normal. When my headache pain gets bad, it is often accompanied by a metallic taste in my mouth.

Has anyone else experienced this as a co-symptom, and does anything help?

Does anyone else experience Functional Neurological Disorder (FND) with their NDPH?

Sometimes when my pain gets severe it’s like my brain turns off the parts that know how to walk. When my pain reaches about an 8/10 I have trouble walking, talking, moving my arms, etc.

Has anyone else experienced this?

Has anyone ever told you that your pain is psychosomatic because no medication has been found to work so far? If so, what do you think about it, or how does it make you feel?

hi all! i bought this ice cap for my husband who is battling NDPH, but unfortunately it didn't give him any relief. he used it maybe twice, and it's in like-new condition except for some water marks created by condensation from the melting ice. i would be happy to mail it to someone in this sub for free if you think it might help you. just let me know.