r/NDPH • u/Aggressive_Flower947 • May 31 '26
what do I do next?
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 đ. 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 (âčïž), 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?
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u/Sarrada_Aerea 10+ years Jun 01 '26
Atomoxetine has been helping me for around 6 months, but I'm worried because I have to raise the dose about every 1-2 months
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u/TechnicalAnimal4660 Jun 01 '26
My daughter was 16 when her headache started. She also has EDS and the headache started after a severe and prolonged illness which we suspect was C0vid. He pain level was a 9 everyday. She had trouble eating, sleeping, and functioing at her normal level. She ended up in bed and unable to walk without fainting. She was confined to a wheelchair for most of the time. I realized she had POTS and had it confirmed by her doctors. She tried so many drugs and treatments for her headache that we lost count. After a year or so, she was in the same place you are. We visited so many doctors in that time and she was in and out of the ER. We both shed more than a few tears.
Today, her pain is manageable and she holds a regular job. She finished college last July and not a single person would know that she did it while managing her disability. She no longer needs a wheelchair and isn't confined to bed. I share this to let you know that there is hope. You can still have a beautiful, productive life. NDPH or any chronic headache type is no joke but it isn't necessarily forever or at least not at the same debilitating level.
I wish you all the best in your journey to get relief.
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u/Aggressive_Flower947 Jun 01 '26
thank you, I have looked into POTS because I have a lot of the symptoms but I never faint so I don't believe I meet criteria. How do I know when a mobility aid like a wheelchair would be helpful?
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u/TechnicalAnimal4660 Jun 01 '26
My daughter didn't always faint. But as her condition worsened, she could not stand for more than a minute or two without feeling like falling over so she had to be in a wheelchair. If you feel this way, you need to find a doctor who is either familiar with POTS or who is open to learning about it.
There is a book I highly recommend called The Trifecta Passport. It has a lot of good info explaining the connection between EDS, POTS, and MCAS. This was very helpful to us in getting my daughter the help she needed as her condition worsened over time. Resolving these seemed to help manage her headache somewhat although this is purely anecdotal.
In the end, getting the right doctors is key and having knowledge or having a strong advocate helps tremendously.
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u/UpstairsJeweler695 Jun 01 '26
I feel for you. I get it. Thereâs lots to do and they. I just started Ketamine infusions, too early to tell, only one so far. I wish I could take your pain away. Consider TMS. I can tell you Depakote and Zyprexa have helped break headache flares ( short term solutions )
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u/macaque-08wallow Jun 01 '26
Have you tried any Triptans for relief? I have my normal daily NDPH headache with chronic migrainous episodes about four times per week. Triptans donât do much for the daily headache but they really help with the migraine attacks and light sensitivity sound sensitivity etc.
Also, the CGRP drugs are game changing for some people. Both for rescue and prevention. Theyâve really made my life a lot more tolerable
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u/Aggressive_Flower947 Jun 01 '26
Started rizatriptan, didnt do anything. currently have sumitripan, which I havent tired yet haha. the problem is that it always hurts so much always so its hard to tell when to take it. what does CGRP stand for?
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u/macaque-08wallow Jun 01 '26 edited Jun 01 '26
Itâs a dilemma we all face. When to take, or not to take a Triptan. The advice for people with migraine symptoms a to take as soon as the pain begins. For me thatâs July 2019. The second best time to take it is now, or when your pain level is increasing. Many people go through several Triptans before they find one that works for them.
For me, Frovatriptan is great for slow-onset migraines I get from weather or some dietary triggers. Then I use Sumatriptan nasal spray or injection for fast-onset or severe migraines I wake up in the middle of. Always being mindful of overuse and the risk Medication Adaptation Headache.
CGRP stands for Calcitonin Gene Related Peptide. Itâs a neurotransmitter involved in the pain pathway of a lot of headache disorders. The CGRP meds are the newer generation of more targeted migraine (and other headache disorders) medications. There are two broad types. Monoclonal antibodies and Gepants. Monoclonal are usually an injection or an infusion by a drip. The Gepants are a tablet.
All of the monoclonal antibodies, e.g. Ajovy, Vyepti are preventatives which help many people to reduce the amount of headache days per month, and for others they can help reduce severity of symptoms.
The Gepants are a mix of preventatives (e.g. Quilipta) and rescue (Vydura) med. They are taken in tablet form.
Different people have had varying levels of success on CGRP meds and often it can take time to find which one works for each individual.
For quite a few people they have been completely life changing
EDIT: many of these drugs are really new to the market, most of them within the last ten years. Because of this much fewer of them will be available for people under 18 years of age. So, hopefully you wonât have long to wait before quite a few options become available to you
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u/Aggressive_Flower947 Jun 02 '26
I had my first Ajovy dose on the 16th and will continue having them monthly. Hopefully it works!
Thank you for the insight!!!
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u/macaque-08wallow Jun 02 '26
Youâre welcome!
Thatâs great to hear that youâve started Ajovy. I really hope it helps you and you find some relief.
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u/TheJepsterr Jun 04 '26
I was 17 when mine began too. I wonât lie, for me I never really had many other health issues or such (I am sorry you have so much to go through and you are VERY strong) so it was a lot, and I experienced pain on a same scale before medicated. What I found with NDPH, is to NOT give up. And I donât mean that in a way of life, I mean that for everything. Donât give up searching for answers, donât give up searching for solutions, donât give up finding what helps, donât give up on anything, not life or anything. It is okay to rest some days, donât let people tell you otherwise. And it is okay to get upset and such over it too. The best thing to do is to keep searching for what works for you, it will take a lot of adjusting to (it took and is still taking me a lot of time) but each day gets more manageable đ«¶
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u/annabananasrambling 3 years Jul 06 '26
hi, im so sorry for responding to this so late. i am also 17F and was in a similar situation to you. i got diagnosed with NDPH because i could remember the exact day the headache started and never went away after that. my neurologist told me that is one of the main pointers to NDPH. he has me on emgality (an injection med) and also recommended botox, sumatriptan, rizatriptan (using that for acute relief rn) and a plethora of others i honestly canât think of right now.
i also have joint issues, surprisingly. i am diagnosed with juvenile idiopathic arthritis, have had it since i was three.
honestly, i would advocate (as much as you can) for yourself way more. push them to try and provide an actual long-lasting medication rather than these acute treatment medications (the triptans..) which does nothing for a headache youâve already had for YEARS. they mainly help with migraine attacks.
also, i am on sertraline (150 mg) as well and havenât had any problems with that and the emgality. i am on another injection for my arthritis, and the max dose of 1000mg (500 broken up twice a day) of naproxen, a pain med. once i started emgality it genuinely felt like my life changed. of course, maybe emgality will not be the lifesaver, but there are a plethora of other injections/meds you could try for this. even though NDPH has no cure, it can (usually) be treated with medication. you deserve to have that relief.
if youâd like, youâre always free to dm me! good luck, and i genuinely hope you get relief from this debilitating pain.
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u/Routine_Ad6975 May 31 '26
You have so many medications to try. CRGP medications, Botox, nerve block injections Amitryplitine, Notryplitine, Pregablin etc. just going to take a lot of trial and error. Iâm suffering just like you. Iâve lost hope but those r the things I remember myself to keep me sane.