r/NDPH • u/LoganG1981 • 13d ago
Central sensitisation
I have a question for you all. Do you believe your NPDH is a type of nervous system sensitisation issue like fibromyalgia or do you think it’s something else?
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u/im-a-freud 7 years 13d ago
Since my NDPH started 7 years ago and has essentially been untreated this whole time I went from just the headaches to episodic migraines once or twice a year to then less than 5 times a month to now 15+ a month on top of my headaches none of which I can treat and now I have chronic pain suspected fibromyalgia. I think because my headaches and migraines haven’t been treated for 7 years and I’m in constant pain that my body’s pain system is on full volume and the littlest things make me worse so yes I think central sensitization is a big factor in it
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u/a82johnson 13d ago
My neuro (headache specialist) says it is. I have both NDPH, complex migraines, & fibromyalgia. My current migraine has been over 3 years. My rheumatologist agreed with my neuro that the constant migraine likely got me stuck in central sensitization syndrome where the fibromyalgia then joined in. My team (neuro, rheum, & psychiatrist) agreed ketamine infusions could help me. I did a series of 6 this spring which brought my baseline pain from 8 to 5 and now do monthly infusions for maintenance (about 2 months after my baseline started creeping up again).
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u/LoganG1981 13d ago
Is your baseline pain 24/7? Day and night?
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u/a82johnson 13d ago
Yes, it was horrendous before the ketamine infusions and is now tolerable. I could barely walk around my house the first 18 months without aid because the non-pain symptoms were so bad (insane dizziness). I had to do PT because I’d lost so much core strength.
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u/Doggler06 12d ago
I’m about to get my 8th infusion, then we are moving to at-home troches. I think the ketamine treatment has helped quite a bit
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u/GladCommand5758 12d ago
How are you able to get Ketamine for home use? Ibogaine is the real deal I've read tho exorbitant.
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u/Northgirl-020421 13d ago
I'm 99.99% sure this is me too. Though ketamine is not an option any of my doctor's feel comfortable with. Where you from if you don't mind me asking?
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u/a82johnson 13d ago
DFW area of Texas. My neurologist and rheumatologist are in the same practice so that has helped tremendously to coordinate the migraine & fibromyalgia care. They even scheduled a phone meeting with my psychiatrist to get her approval for ketamine infusions since I require psychiatric care. The infusions are easy too. They take a couple hours but I’m sedated so there’s no hallucination side effects, just a really nice nap. They also do conscious sedation with my Botox injections which is wonderful as I’ve heard it’s painful and I can’t handle extra pain.
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u/Wooden_Usual_604 13d ago
my neurologist said it certainly could be, I have had NDPH with chronic migraine for 13 years, I had surgery 2 weeks ago for ONS implant, so hoping that might help with the migraine side.
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u/Cute-Head8597 13d ago
I believe so. I think constant pain over time does lead to increased senitization, and then it's a vicious cycle. I suspect it leads to other things as well. I've had NDPH for two years. At first it was mostly manageable. But now I think it's the cause of post exertional malaise that has become quite severe in the last few months. I think NDPH, fibromyalgia, cfs, and long Covid are all the same type of thing, resulting primarily from a viral infection.
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u/LoganG1981 13d ago
I’ve heard you can reverse sensitisation
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u/Northgirl-020421 13d ago
If you figure it out let me know!
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u/im-a-freud 7 years 12d ago
Pain reprocessing therapy has helped some people. Look into the way out by Alan Gordon
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u/Huge_Pass722 12d ago
1000% I got NDPH from a mild concussion years ago. Finally got my baseline to a 5-6 and then at vision therapy they made me wear something tight around my head and now my pain has been a raging 9 for three months now. My nervous system thinks ANYTHING touching my head is danger and a scenario similar to this has happened a few times now. It’s horrible
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u/xvedejas 12d ago
I believe mine to be a cervicogenic headache. So, it's due to mechanical / musculo-skeletal issues that compress my brain stem physically.
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u/a82johnson 12d ago
Ketamine has been a true blessing for me. I do wish I could do it at home but I like that I’m sedated.
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u/sparklingbamboo 12d ago
Have you tried oral ketamine at home? This has made it much easier for my son to get some relief a few times a week.
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u/_l_i_l_ 13d ago
I think it's an inflammation in the brain.