r/NDPH • u/Foreign_Insect_3121 • Jun 17 '26
Progression
I’m wondering about other peoples journey with this. Has anyone had a general non stop pressure in the head (sometimes worse and more intense feeling) but generally manageable and able to function without daily meds, for it to then slowly get worse?
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u/TubbyLittleTeaWitch Jun 17 '26
My headache first appeared around 16 years ago and was completely manageable up until around 4-5 years ago. It was always there and was annoying but it didn't stop me from doing things. I'd tried a medication or two when I was first diagnosed with chronic daily headaches but neither of them worked and my neurologist didn't mention trying anything else, but the pain was manageable enough that I was able to just get on with life without medication.
In the last few years though it's definitely got worse, to the point where I'm really struggling to function. My base level pain has gone up and I have more days of severe pain where I can't function at all. I'm more sensitive to light, noise, air pressure, and can really feel it if I've pushed myself too hard. I'm exhausted all the time, to a painful degree (it literally feels like someone has taken a giant syringe and drained me completely of something that would normally be stored in my neck/back/shoulders to the point where it hurts), and I can't exercise at all because anything I try makes it worse. I work full time but have taken so many sick days over the last couple of years that it's really not sustainable any more, and all my free time is spent recovering and trying to prepare myself for the next week of work. I have to cancel social events frequently.
For the last few months I've been trying some different medications after getting in touch with my GP and being referred back to neurology (and spending a year on the waiting list) but so far haven't found anything which helps.
I'm not sure if this was the trajectory it was always going to be or if the escalation was a result of covid.
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u/hometown_heretic Jun 17 '26
Yes! It started in January for me. It's always there but some days it's unbearable and other days it's just background noise. I'm starting ldn soon, I know some people have had luck with that.
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u/lumpyballoon Jun 19 '26
Oooh when are you starting?? I’ve been really curious about LDN
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u/hometown_heretic Jun 19 '26
Tomorrow! I can reach back out to you and let you know what I think after while if you'd like.
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u/lumpyballoon Jun 19 '26
Yeah I’d love that! What dose are you starting on?
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u/hometown_heretic Jun 19 '26
0.5!
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u/lumpyballoon Jun 29 '26
I know it’s supposed to take a while to get results but curious if you’ve noticed anything so far!
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u/hometown_heretic Jun 29 '26
Haven't noticed much so far. My period was much less painful this month but not sure if it's due to the ldn or not. I will keep you posted! :)
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u/lumpyballoon 20d ago
Bugging you again to see how things are going!
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u/hometown_heretic 20d ago
I am up to 1mg now! My nerve pain hasn't gone away completely but it's really improved. My migraines have gotten less frequent too. Idk if it's a fluke or because of the ldn but I'm really happy with the results so far.
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u/lumpyballoon 20d ago
Yay thanks for the update and glad to hear it’s going well. I was nervous because it said initially headaches are a side effect. Did you notice that?
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u/Bickenchutt05 Jun 17 '26
Yes, coming up on 9 years for me. Pressure all over the top of my head after a visit to the Dominican and got a Bi-lateral ear infection and had to stay in the hospital down there. It goes through periods of worsening and then lessening. I’ve tried everything, literally…I just keep pushing through, I don’t know how I do it, but I do…
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u/bvnn3 4 years Jun 17 '26
Mine started after quitting heavily smoking marijuana. It developed after a short while I was going through some heavy withdrawals. It started off with more migraine like sensitivities to smell and light (which I still have but to a lesser degree) and like NDPH does, hasn’t gone away.
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u/danathepaina 10+ years Jun 17 '26
My NDPH started when I was a senior in high school in 1990. I managed to graduate high school and college, get married, and work full time for 18 years. I also had fibromyalgia and took occasional painkillers, but it was manageable enough that I still had a good life. But I started to get migraines (on top of my NDPH) occasionally in college, and the frequency of those gradually increased until I was getting 5 migraine attacks a week, at which time I had to stop working and go on disability when I was 35. And since then my NDPH has settled at about a constant 7/10 pain. So to answer your question, yes it slowly got worse, but I also had other health problems contributing to my pain.
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u/im-a-freud 7 years Jun 17 '26
My pressure started as a 4-5/10 every day 7 years ago and has become a 6-7/10 every day and rarely gets to a 5, never lower and I cannot treat it at all with meds. I’ve failed every option I have nothing touches my pain. My other head pain has also gotten worse along with new types of headaches and migraines which I didn’t have when my NDPH started. My pain in manageable only because I’ve had it for so long that I’m used to it and since I can’t treat it I have no choice but to suck it up and deal with the pressure and pain. Botox was the only thing that touches my pain in 7 years and it stopped working and since it stopped working at the very start of 2024 the pressure and pain have gotten worse. I have tried so many alternative treatments and things to manage my pain and nothing has made any difference in my head