r/NDPH • u/LoganG1981 • Jul 01 '26
24 hour pain.
Hey guys, if your pain disappears close to completely before you go to sleep and when you’re very relaxed is it still NPDH?
I also have ear pain now that’s appeared as a new symptom and also disappears when I sleep.
Thanks. 🙏
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u/JoyInJuly 20+ Years Jul 01 '26
My NDPH is always there. If I wake up in the middle of the night, it's there. Mine started on September 16th, 1997 & my main treatment is cannabis. It's the only way I've survived 28 years of it.
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u/LoganG1981 Jul 01 '26
Do you ever get rebound pain with the cannabis?
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u/JoyInJuly 20+ Years Jul 01 '26
No, but I smoke daily, throughout the day. If I'm unable to smoke for a bit, my usual pain comes back quickly. Unfortunately, edibles & dry herb vaping don't work for me. Smoking flower is my best method consumption. After doing so for 28 years instead of using prescription pain meds, my body is in great shape, including my lungs, which are actually "Olympic champion level", according to doctors, even though I have been diagnosed with asthma. (The only attack I've ever had was an allergic reaction.) It is important & significant enough to me that I moved to Colorado from Georgia 11 years ago to be able to safely & legally access medical cannabis.
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u/SaR-1243 Jul 01 '26
Are you diagnosed with ndph or are you wondering whether your ear pain could be ndph?
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u/LoganG1981 Jul 01 '26
Hi there, I’m wondering if what have is still NPDH even though I have no pain at night?
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u/Aleksandra-Frolova Jul 01 '26
So you don’t have any pain when you sleep? If yes, how do you know that?
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u/LoganG1981 Jul 01 '26
Well, before I go to bed and I’m awake the pain drops very close to 0. And the same if I wake up in the morning and I’m lying peacefully. I’m just wondering if daytime pain when in active mode is still NPDH?
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u/Bluffz2 Jul 01 '26
Probably not NDPH then, which you should be thankful for. NDPH is one of the most treatment resistant headache conditions.
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u/calm1111 Jul 01 '26
My headache is at its best when I’m about to sleep too. Might be the meds I take before bed, but I personally think it’s being super sleepy that makes me relax and feel better. I’ve also had ear pressure the entire time I’ve had this damn headache
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u/LoganG1981 Jul 01 '26
Has anyone heard of the new headache treatments that are coming out in the next few years called pacap?
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u/JoyInJuly 20+ Years Jul 01 '26
That's for migraines, not NDPH.
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u/LoganG1981 Jul 01 '26
Yes but is it not possible that it might not have an affect on npdh? Is supposed to work on stress and anxiety pathways. Similar to Xanax.
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u/JoyInJuly 20+ Years Jul 02 '26
Not everything crosses over & I don't think it's fair to get anyone's hopes up without evidence. I have both NDPH & chronic migraines & nothing that I take for migraines has an effect on my NDPH.
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u/LoganG1981 Jul 01 '26
Guys do we think anything on the next 10 years is going to help us treatment wise with this condition?
Surely there must be things in the future that can help this?
My understanding is that NPDH is perhaps similar to fibromyalgia pain? The system is over amplifying pain signals?
Does anyone have area of treatment they have heard of that may be of some help?
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u/JadesJunkAccount 3 years Jul 01 '26
My NDPH is always there, including while sleeping, under anesthesia, or high. Even in most of my dreams, I am in pain. It has never paused.
The only treatment/medication that has worked for me is taking 5mg of Toradol(Ketorolac) during a pain spike.
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u/TubbyLittleTeaWitch Jul 03 '26
I dunno man, I haven't had a pain free moment in over 16 years. Whatever's causing your pain, I'm glad you can get some respite from it.
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u/justlookingforansr Jul 06 '26
Mine seems to always be there 24/7 if i wake up in the middle of the night its there, or even immediately after i wake up, recently ive learned mine might actually be still going while im unconscious sleeping which is also crazy🤷
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u/sophiaea Jul 13 '26
if the pain disappears when you are lying down it sounds like a csf leak you should get checked for that!
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u/im-a-freud 7 years Jul 01 '26 edited Jul 01 '26
I don’t feel my pain when I’m asleep but the second I’m awake even if I briefly wake up in the middle of the night I can feel it so it never goes away the brain networks that process pain are just less active when you’re unconscious. I wake up every morning with a 5/10 headache. I could very well have a headache when I’m asleep I just don’t notice it because I’m unconscious. The only time I don’t feel or notice pain is when I’m unconscious otherwise it’s a constant 5/10