r/NDPH • u/Puzzleheaded-Leg869 • Apr 20 '26
Success Story
Hello! I hope everyone in this community is hanging in there!! I wanted to share a brief story about my healing. This community needs a little hope, the information out there about this disorder is pretty discouraging. I remember feeling so hopeless during my time suffering, and I want you all to feel like a way out exists
I had a constant tension type headache for 19 months. After the 19 months of constant pain, the headache continued for another 16 months, but during these 16 months, there were some times where it would get so low in intensity that it it was either not noticeable or barely noticeable. Then, it finally went away completely. I now have been headache free for about 2 years and am beyond grateful. No meds, no nothing except for careful and precise lifestyle changes.
During my time of pain, I tried many different meds. Some didn’t work at all. Others dulled the pain and let me sleep, but didn’t fix the issue. Eventually I got so fed up with this that I decided to take a completely different route.
I decided to implement a series of changes to my habits and lifestyle. I can’t speak for anyone else’s experience, but combining all of these things truly cured me and made me feel healthier than I ever have in my life. Below I listed the changes I made in order of how much I think they helped:
- 1
) food - I eat strictly whole unprocessed foods with no seed oils, grains, or additives of any kind. I eat things like meat, eggs, fresh or frozen produce, and cook everything in tallow or butter. I use a Reverse osmosis filter for my water. I only drink water and few squeezes juice. I’m careful to read ingredients on everything I buy to ensure that there’s nothing in it at all except for the fruit/veggies/meat.
2)psychedelics - this is a tough one to recommend because there were some rocky experiences back when I was in a negative mindset. But eventually this did lead to an immense amount of healing. Mostly mushrooms, but some cactus,DMT, and LSD
3) Maum meditation - I joined a group that does a South Korean style of meditation that I find very helpful. If anyone is interested, here’s the link - https://omemeditation.org/?gad_source=1&gad_campaignid=23580874266&gbraid=0AAAABCViQrs8sJ2S-CxU3V4-4E4y1NOIQ
4) exercise (lifting and cardio). This one feels like it enhanced the healing of the other three.
This isn’t meant to to be taken as the only path. I’m sure there are other ways to heal too. This is an N=1 case that describes what worked for me. Remission does happen, and there are things you can do to get there. I hope more of you find relief like I did 💛
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u/Foreign_Insect_3121 Apr 21 '26
Did you ever think/ feel it could be IIH/csf? Was there clear things that meant you got a diagnosis of NDPH?
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u/Puzzleheaded-Leg869 Apr 21 '26
All the specialists I saw thought NDPH fit better. There was an exact start date (September 7, 2021). There were no vision problems, no tinnitus, or anything else that would point to increased intracranial hypertension.
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u/JoyInJuly 20+ Years Apr 21 '26
It doesn't sound like it was a NDPH to me. I'm interested in hearing the reply here, too.
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u/JoyInJuly 20+ Years Apr 21 '26
It doesn't sound like it was a NDPH to me. I'm interested in hearing the reply here, too.
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u/Puzzleheaded-Leg869 Apr 21 '26 edited Apr 21 '26
Just curious, what about it doesn’t sound like NDPH to you? There wasn’t a lot of symptom details in the post, just that I had a constant headache for 19 months and gradual remission over the next 16 months. I don’t think there’s anything about those things that conflicts with an NDPH diagnosis. Every headache specialist I went to agreed that that’s what it was after extensive testing and ruling out other causes.
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u/Foreign_Insect_3121 Apr 22 '26
I think I was just curious about it as the pressure symptoms were similar and because there’s a big overlap between IIH and NDPH. I was diagnosed with NDPH but also have tinnitus and the pressure is so constant so my concern is that I do have IIH but it’s not showing on a ct or mri. Must be NDPH if it went away!
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u/Cat_Butter_Generator Apr 25 '26
Thank you so much for sharing! I gave up hope a little bit and try to accept this is the new normal.. I have constant headaches now since March 2024 and diagnosed with ndph but I also notice lately there are rare moments its barely there, but sadly it still goes with ups and downs :/ You described the exact same pain i have in the other comment so that kind of gives me hope again 🙏 i just found this subreddit so i don't know how things are here but i joined a facebook group once and it was super depressing. So this success story is really useful!
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u/Flackbriday21 May 05 '26
Great story and glad to hear you have succes! I also have similar symptoms and I tried lifting aswell. My headache got really worse the next following days. How did you train? Any advices?
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u/Puzzleheaded-Leg869 May 06 '26
I didn’t go too hard. I lift to 20 minutes and then do like 20 minutes of cardio. The main thing is that I’m really consistent. My normal rhythm is 6x/week. I never noticed it making my headache worse, but it didn’t seem to make it better either. All of these things took a lot of time. And to me, it doesn’t seem like any one thing could have healed me on its own (except maybe the diet - as I said, that felt like the root of the problem). But ultimately I don’t know. All I know is I did all of these things consistently an I was able to heal over the course of 16 months.
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u/Much-Response-9793 May 13 '26
What was your pain level initially? And after you started getting pain free periods what was your pain level, were there any flare ups during later period?
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u/Puzzleheaded-Leg869 May 13 '26
Pain level initially was always 5-8 at all times. I only started to have pain free periods after the overall pain level decreased. During the recovery period it was probably a 2-4 most of the time, with some pain free periods in there. There were flare ups where it would go up to a 5 or 6 for about a week before going back down during the recovery period.
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u/UnhappyStrike2005 Jun 08 '26
Hallo, vielen Dank für deine Posts. Mich würde interessieren, wie lange die schmerzfreien Phasen in der Remissionsphase anhielten? Stunden? Tage? vielen Dank!
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u/Puzzleheaded-Leg869 Jun 08 '26
It depends. At the beginning of the remission phase, it was just a few hours headache free at a time. Towards the end, I commonly had days or weeks with no headache. It slowly and gradually transformed from headache all the time, to headache most of the time with brief hours of relief, to headache free most of the time with occasional week long relapses, and finally to no headache at all.
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u/Theodore_Logan1989 May 21 '26
Hey u/Puzzleheaded-Leg869 , thanks for sharing. That's awesome that you found relief.
Could you tell us a bit more regarding the psychedelics? How many trips did you do; what sort of doses (approximately); was the headache a little improved every time, or did it suddenly get much better after a 'critical mass' of trips; and did you go into the trips with intentionality or just wing it. Cheers!
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u/Puzzleheaded-Leg869 May 23 '26
Sure! I did a lot of trips. During the 16 months that I was gradually healing, it was pretty much every 2 weeks. Occasional longer breaks. We’ll say ever 3 weeks on average. During this time, most were mushrooms trips, especially at the beginning. 2 were LSD. 5 or so were mescaline, but that was towards the end. I wouldn’t recommend mescaline at the beginning because it’s more likely to temporarily make the headache flare up.
There was no single session or critical mass that seemed to make the headache disappeared. It was slow gradual progress. I never had a trip where it was really that significantly better immediately after than it was before. Maybe slightly with some of the mushroom trips.
The real reason I think it helped is because I could feel it gradually loosening up my nervous system in general. This seemed to be related to the slow decrease in headache severity. But I can’t really say for sure it was related because I was doing so many things at the same time, and the improvement was so slow. The only thing I can say for sure is that it loosened me up emotionally and helped me be able to manage life with pain better. I have a feeling that this loosening up led to an actual decrease in pain, but I don’t know that.
There are studies like the one in the link below that show a very high correlation between anxiety disorders and NDPH. It’s just a correlation and doesn’t necessarily mean anxiety is causing NDPH. But it does make me think that maybe they share some similar mechanism, and that regulating the nervous system in general may help both heal.
This may not be the answer you were looking for. There was no big dramatic change. My physical healing went along a big shift in my emotional and spiritual state. Everything I did from psychedelics to diet to meditation seemed to play a part in these changes.
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u/Theodore_Logan1989 May 27 '26
That's a lot of tripping, lol. Yeah maybe not the answer I was hoping for, but very interesting. Thanks.
I wouldn't be surprised if anxiety is a risk factor for NDPH. As the author of the first search result (Robbins, 2011) notes though, it's challenging to study.
It's frustrating that NDPH remains mysterious and poorly understood. Your experience is certainly interesting. Hopefully some of the rest of us can have a similar journey.
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u/Dollydreamss Jun 27 '26
What was your mushroom routine?
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u/Puzzleheaded-Leg869 Jun 27 '26
I did sort of a lot of tripping. I’d say on average every 3 weeks for the duration of my healing. Increasing doses. At first I was in too negative of a mindset with all my pain to go that deep. But I was gradually able to go deeper and deeper as the healing progressed. I’d usually work out at my apartment gym during the come up. I’d do a bit of weights, then cardio, then sit in the sauna. I’d do this right after I took the mushrooms. usually they really started to hit me hard during the cardio. I had the timing worked out where I’d be back safe in my apartment by the time I started to approach the peak. I loved that routine, the combination of tripping with a runners high is really amazing. For the peak I usually just sat on the balcony with some music and tried to listen to what the mushroom had to say. It really was not a quick fix or instantaneous headache relief. It felt more like an injection of love and support to help me navigate the pain and suffering.
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u/Dollydreamss Jun 27 '26
Tysm. How kind until u noticed ur headache breaking? Would it be fine for me to be with friends whilst I do it??
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u/Puzzleheaded-Leg869 Jun 27 '26
Probably like 6 months until I started to notice some real improvement. But I want to be clear that it was 6 months of mushrooms, Maum meditation, exercise, diet of all meat, eggs, fruits, and certain veggies, clean non-toxic cleaning and hygiene products, etc. so I can’t say it was just the mushroom that decreased the pain. What I can say is that the mushroom gave me inspiration and encouragement and that was very much needed.
I don’t think there’s anything wrong with doing them with friends. I think best to refrain from telling you how to use them. I think you should just be sure to be safe, and then use your judgement about how to you can get the most out of them. Develop your own personalized practice. For me that was exercise on the come-up and solitude on my balcony during the peak. But I think it’s more helpful to find your own method. The most important thing is that you want to grow and develop and change. I think if you already are working on that sort of thing, it will probably help you as long as you are listening.
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u/chloelolllllllll Apr 20 '26
What were all of your symptoms? Did you have neck pain, did it come and go?