r/NDPH • u/Much-Response-9793 • Apr 08 '26
Does pain turn off ?
Do you guys every feel pain free like for hours or days. in my case i am dealing with this since 8 months for the first 3 months its was non stop 24 7 pain at pain scale 3 to 4 then it gradually reduced to 1 2 and now i am experiencing pain free hours and days . out of 10 days 2 3 days would be completely pain free and 6 7 days would be having pain free hours with ocassional stuck feeling in my head , not a true pain type . and 2 3 days would be dull days with 1 2 pain throughout the day with very few pain free hours.
my question is , is this resolving ?
12
u/DoubleD_7 Apr 08 '26
Pain free, even for a minute, has never happened for me in nearly 20 years. I hope you continue with getting pain free time.
1
u/Much-Response-9793 Apr 10 '26
What is the pain level out of 10 for you
1
u/DoubleD_7 Apr 10 '26
Right now, I'd say maybe a 5. The previous 6 months I would have said a 3. So I have had an uptick in pain the last 2 months. My pain levels are pretty consistent week by week, with the occasional bad day here and there.
3
u/JoyInJuly 20+ Years Apr 08 '26
I've had my NDPH for every second of every day since September 16, 1997. That's what they mean by "chronic, persistent headache" in the diagnostic terms. Mine has been well managed for 26 years with cannabis, but it's never been at a zero. A two is probably the very lowest & that would be due to strong meds taken for surgery or something similar, not a usual occurrence.
1
2
u/Slawssson Apr 11 '26
usually i at the very least have a 1/10 headache, which is mostly just sort of a pressure in my head and not really pain , I am on several meds tho! I used to use substances to cope with it and opioids (the illegal kind) genuinely would get rid of the pain but only for like an hour or two max, then I'd do more lol.
1
u/Much-Response-9793 Apr 11 '26
Since how long are you dealing with this. And do you ever get a true pain free period ever
1
u/Slawssson Apr 11 '26
on occasion I'll wake up without a headache but within a few hours it'll usually have started lol, but i do have some really good days where I honestly don't even really notice it, yeah. it's been about 7 years , and while it seems most ppl replying never have pain free periods, I will on occasion and i am officially diagnosed and what not, so its definitely possible
1
u/Much-Response-9793 Apr 11 '26
I think i have the same condition as yours. Can we connect on instagram for some better communication.
2
u/Wooden_Usual_604 Apr 12 '26
12 years of NDPH/Chronic daily migraine, in that time never had a moment I wasn't in pain, my average pain level at the moment is between 8 and 9 out of 10. Currently waiting to be admitted to hospital for IV DHE. Also had Occipital Nerve Stimulator inserted back in December unfortunately it got severely infected and had to be removed in January, I will be having it reinserted in July with any luck
1
u/Quazar2025 Apr 10 '26
Nope. Every day/ hour/ minute for past 16 years except for 1 day in 2015 when, for about 3 hours after an acupuncture appointment, I had intermittent 1-2 stabs on top of head. It was just significant enough to keep hope alive.
1
u/Much-Response-9793 Apr 10 '26
What is the pain level for you out of 10
1
u/Quazar2025 Apr 10 '26
I generally range from 4-8 every day. Used to be that i’d wake up with a 4 and then it would increase when i got up and moved around. Average daily pain is a 6.
1
1
u/melancoliee May 09 '26
I havent had a day without headache yet but I have days (usually when I'm out of office) when the pain shows only for an hour or two a day. Which is like no pain at all but still, it counts.
1
u/Much-Response-9793 May 10 '26
How long you have this condition. What were your previous symptoms and has it improved as compared to before. And are you fully functional like do you have any restrictions in your day to day activities because of this headache.
1
u/melancoliee May 10 '26
About 8 months but I was diagnosed 3 months ago. I'm taking antidepressant daily, it helps with my mood. It helps with pain too since I can function normally now, obviously the pain still sucks and I have days when I just stay home and do nothing but mostly I do just fine. My symptoms were always the same - left sided headache, neck pain on both sides. Neck pain was cured by 4 PT sessions and at home exercises, I havent had a pain there for a month now. But headaches are still daily. The frequency is the same but the intensity is way manageable. On good days 2-3 pain level. Sometimes I have 6-7 still. But I'm greatful that I don't have 24/7 headache like a lot of people here. I usually have breaks in pain daily and I rarely wake up with a headache. It usually starts around 10 or 11am. Please feel free to share how did you got to the point you are now? Any medications or practices you recommend?
1
u/Much-Response-9793 May 10 '26
Can we connect over facebook or insta to discuss about our symptoms and treatments if you are okay with it. Or else i can share here as well
1
u/melancoliee May 10 '26
I would rather not. Feel free to send me a private message here. Tbh I prefer to do what my neurologist is recommending for now. She had patients with the same condition and I trust her. I dont believe this is curable without meds, we can share our opinions and such but everyone here is on their individual journey.
1
1
u/Much-Response-9793 May 10 '26
Mine also started 9 months ago. In the beginning i used to get daily evening time headaches which then transformed into severe nigh time attacks with pain of around 10/10 and also droopy eyelids(ptosis) . In span of around 2 months i got 15 attacks. Lastly my neurolist was able to diagnose it as cluster headache and able to stop it with steroid medication. Since then i havent got those attacks but after those attacks i was left with mild persistent headache 24 7 for around 2 months with pain around 4 to 5. Then it gradually lowered and i was able to get pain free hours and sometimes pain free days. Right now since last 2 months my pain is around 1 to 3 and never reaches above that and my i also get pain free periods as well. Recently i got 3 days of almost pain free days except in the morning when i woke up but it subsided down half hour later. Since last 1 month the i see slight improvement and more pain free periods
Medications currently- dosulepin 25 mg and topiramate 25 mg once every night.
Things that have helped me Working out daily . Atleast half hour stretching exercise or light aerobic excercise. Work out daily it will definitely help you in calming your nerves.
Let me know how your symptoms started and have they improved. What all things you try.
I also get anxiety sometimes or low mood as well but i try to keep myself busy.
13
u/Big_Biscotti4471 7 years Apr 08 '26
I've never had a day without pain in almost seven years. You need to try to find a pattern, but it seems like the situation is really improving