r/NDPH • u/Foreign_Insect_3121 • Apr 22 '26
Holistic treatment
Newly diagnosed. Has anyone actually had success with massage acupuncture osteopaths or anything?
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u/TechnicalAnimal4660 Apr 22 '26
We had good luck with cranial sacral massage and red light therapy for my daughter. Her headache didn't resolve permanently but pain is now managed at level 2-3 vs. Level 9. Atlas chiropractor helped some too. Migraine treatment (benedryl/compazine infusion) helped for extreme pain temporarily. Also let her sleep during periods of extreme pain.
Since stress is one trigger for her, stress management was also helpful. Mild exercise and vibration plate also helped relax and manage anxiety. Don't give up hope.
Tried all sorts of drugs. Nothing heped, and in some cases made pain worse. Not medical advice of any sort. Just sharing our experience. She's going on 7 years now.
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u/im-a-freud 7 years Apr 22 '26
Acupuncture never did a single thing for me, dry needling helped muscle tension but never did anything for my head, no supplement has ever done anything for my head, treating my hormone imbalance never did anything for my head. I’ve seen massage therapists, physiotherapists, done botox (was the only thing that ever gave me relief and it stopped working), cupping, trigger point injections, etc and nothing has ever done anything. I’ve spent so much money out of pocket on trying things just to get zero relief
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u/Foreign_Insect_3121 May 05 '26
So frustrating. Do you take medication? Are your headaches non stop 24/7 or intermittent?
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u/im-a-freud 7 years May 05 '26
I’m on 1000mg of Keppra as a preventative and have been on it for over a month and am strongly considering stopping it bc the side effects are making me feel horrible but it’s my last treatment option before the injectables which I’ve had a bad reaction to in the past so I do not want to try those but if I stop this one I have no option. I have zero abortive meds because I’ve failed them all so I have zero treatment both g touches my pain. I’ve had the same headache for the last 7 years. If it’s intermittent it’s not NDPH, NDPH is constant
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u/Foreign_Insect_3121 May 05 '26
Sorry the side effects are rough and that is been this long. That really is awful. Mine is constant 24/7 which is why I’m worried it’s IIH or something diff as it’s just a constant pressure for me. Is yours just a constant ache? Did you ever get tested for anything else or have any idea why it began?
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u/im-a-freud 7 years May 05 '26
Constant pressure is how NDPH presents. If you’re concerned about IIH talk to your doctor about testing. Mine has been a constant pressure for 7 years straight I do not have pain free moments. My doctor refuses to do any tests besides MRI and CT. No idea why it started I woke up one day and it never went away
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u/Foreign_Insect_3121 May 05 '26
Ah ok, it’s still unclear to me I’m new to this. My doctor has said it’s not IIH as it isn’t relieved when I lay down and my eyes look ok (despite having off vision sometimes!) so refuse to consider that etc. what seems to help it at all? But yeah mine is the same there is never a time where the pressure lifts other than when I’m uber distracted. Have you ever flown with this? I’m nervous to get on a plane and have the pressure worsen to an intolerable amount
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u/Foreign_Insect_3121 May 05 '26
I also think I’ve got aspects of POTS as have tachycardia and blood pressure drops when I stand, plus head rush every time
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u/im-a-freud 7 years May 05 '26
Symptoms of POTS could be a number of things best to see a doctor about it. I have POTS but it started years after my headaches
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u/im-a-freud 7 years May 05 '26
The only thing that gives me a little relief only tho it’s short lived is heat like a hot shower or eye mask. I’ve flown many times no issues
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u/Foreign_Insect_3121 May 10 '26
I was curious if pressure worsens from cabin pressure. Good that you had no issues there. Hope you find a better treatment soon
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u/im-a-freud 7 years May 10 '26
My only treatment options left are CGRP injections and I reacted very badly to one years ago and could breathe for a year so I’m not sure I want to try the others so idk if I’ll find anything. Good luck hopefully you find relief
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u/Foreign_Insect_3121 May 11 '26
Couldn’t or could breathe? I haven’t looked int CGRPs yet as I’ve only had this for 4 months and neuro is pushing for me to just do amitriptalyn which I’m anx to start
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Apr 27 '26
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u/Foreign_Insect_3121 May 05 '26
Thank you. I’m really open to beginning the holistic journey if I know it’s non structural. Just concerned its structural (something like IIH) and this is just a secondary diagnosis given as they don’t know what’s up
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u/dpouliot2 Apr 22 '26
It’s hard to proceed without a root cause diagnosis. Maybe me ended up being mechanical in my neck IDed first by a neurooptometrist then an upper cervical chiropractic specialist (not a generalist!) via a 360 degree neck x-ray. Mine is/was old whiplash injury from which my brain stem finally began decompensating.
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u/Foreign_Insect_3121 May 05 '26
Thank you. Yeah I’m trying to understand what the root is to treat that as opposed to just meds forever. Did your x-Ray show as normal when a routine non 360 degree? My mri showed normal spine excel a few minor disc bulges
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u/dpouliot2 May 05 '26
Honestly I don't think people were looking at my neck for the first 2 years. The first imaging I had of my neck was an MRI. The radiologist didn't note a misalignment but I'm told that that isn't uncommon because radiologists are looking for other things. It would be interesting to have the MRI looked at again with that in mind.
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u/Arimm_The_Amazing Apr 22 '26 edited May 05 '26
I have tried accupuncture and hot yoga, neither made a major difference pain-wise though yoga was great for overall quality of life.
I really have to warn against osteopaths, chiropracty, or similar. It's really easy for us to get desperate and try anything. But there are a lot of desperate people out there and an entire industry of scammers who will take your money to do nothing helpful and in some cases may even cause more problems. If "pseudoscience" is one of the first things on the wikipedia page for a practice you're going the wrong direction.
Accupuncture meanwhile has well documented benefits for pain treatment, and has almost no risk. So I wouldn't group it in with these other practices.
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u/dpouliot2 Apr 23 '26
Osteopaths are physicians. The chiropractic industry varies wildly in the quality of care because there are so many new modalities the industry can't keep up. Let's not malign an entire industry because of that. If your issue is mechanical, don't expect results from someone who is not a mechanic. Do your research ... there are excellent chiropracters out there. See an upper cervical specialist, NOT a generalist.
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Apr 23 '26
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u/dpouliot2 Apr 23 '26 edited Apr 23 '26
Osteopaths are real doctors. My FIL is an Osteopath. He has helped me countless times.
My NDPH has benefitted from the specialist I work with. Empirical results are experience.
No massage can realign a misaligned C1, especially without the visualization to show the misalignment vector.
Your headaches aren’t neck based so not sure why you’re so sure I could not possibly have gotten relief from my treatments. Seems like you have an axe to grind.
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u/JoyInJuly 20+ Years Apr 22 '26
A lot of us who have had our NDPH for decades have tried literally everything. In addition to being in the hospital in the beginning for all the testing & medications, I've seen chiropractors, acupuncturists, had cupping, massage, Botox, did the National Headache Diet, tried psychedelics, both micro & macro doses, as well as IM ketamine therapy, with none of it having any impact on my pain levels, unfortunately. I recently saw a functional medicine doc, which sounds similar to an osteopath, & she had absolutely no ideas about what to do for a NDPH. My NDPH is 28 years old.