Does anyone have migraine or daily persistent headache?

I’ve had NDPH For 22 years. There are 326,000 of us globally. Toughest headache that exists. I fit the profile exactly.

What is NDPH? So many responders use acronyms that none of us know.

Oh sweetheart, I know there are many, many people who have headaches everyday with migraines intermittently including myself. I was even treated by one of the best headache clinics in the world called the Diamond Headache Clinic in Chicago. I was hospitalized there at least 7 times and found other people with the exact same issue but usually with another serious illness like Muscular Distrophy. So as horrible as I felt, it gave me a new perspective. I’ve had daily headaches and severe migraines for 46 years and feel like a pharmaceutical guinea pig. I’ve been on every class of antidepressants, atypical antipsychotics, pain meds, you name it. I was using Imitrex self injections back in 1992. Nothing helped. I finally resorted to seeing a pain management physician, who is a physiatrist. He had me on methadone which obviously helped but it was the only pain medication that I needed less and less of until I didn’t need it. But my doctor started giving me Botox injections which helped me significantly. I only took ibuprofen and occasionally Amerge (naratriptan) for the migraines and I’ve been headache free for at least 8 years. I’m having some breakthrough pain as of recent, but am going to try a nerve block tomorrow. One of the very few things I have not tried and believe me, I’ve tried everything. Acupuncture, acupressure, massage, strict headache diet, biofeedback (extensively), chiropractic, dental mouth guards, nerve ablation, DHE 45 treatment, hospitalization, and every drug you could possibly think of for headaches, migraines, and pain in general. Seriously the list is long over 44 years. I’m 68 now and eventually qualified for Social Security Disability but that keeps you very poor and unable to afford living alone, not that I’d want to right now, but I could easily see myself becoming homeless as a result of everything I’ve been through and the cost associated with my pain. I often wish for something like cancer so I know if I couldn’t be helped that the end would be near. It’s a hard, hard journey that I’d never wish on anyone. You are not alone.

Chronic pain is difficult to treat, especially as headaches can have many different causes or, to current medical science, no understood cause at all.

Hopefully if this is a cross you must bare, this will be your only primary health issue for a good long while. Chronic pain is difficult to treat especially when multiple sources react differently to the meds. Ex I have about four non-diagnosis diagnosis, meaning they determine what you have is mostly what could not otherwise be rules out (like lyme disease, etc.). Occipital neuralgia, peripheral neuralgia and fibro myalgia and transform migraines. I've had an internal pump that feeds medications into my spine, this allows lower doses, as they don't get dilated in the digestive system etc, before reaching the optimal location for treatment. It's also supposed to drop the severity of negative side effects. My pump med works well especially for the limbs, joints, and skin. It doesn't knock down the head pain enough to return productive. But, going up on the pump med (Chlonadine) seems to make the head pain worse, at least for a few weeks afterward, so I'm scared to allow them to up that dose.

I too am on Esgic (Butalbital described above). It works much of the time to stop much of the higher level stabbing and brings the general level down. But the effects only seem to last about 2hr and cannot be repeated until 4hrs have elapsed, and really, for me, cannot be taken every four hrs as it does lead to nasty rebound and the caffeine makes getting more than 2 or 3 hrs of sleep, a night, almost impossible.
It also cannot really touch the worst episodes (the pain behavior I associate w/ the episodic migraines that would numb my face, hands, legs, etc., and throb high enough to cause severe nausea, heat, sound, and light intolerance. Those used to last typically 3 straight days.)

If the Drs and specialists you
see seem at all deaf or disbelieving of your descriptions, PLEASE bring someone to act as you advocate. Especially when you see a new medical profession for the 1st time. Current Dr offices might expect a consultation appointment to be scheduled when bringing your advocate. My advocate, my spouse, is MUCH better at describing my current quality if life and how my conditions interfere with occasionally playing the part of a human being.
Kindnof like a note from one's parent/guardian when missing a day of school, everyone, even the good drs, seems to listen/believe (?) her more readily.

Thank you for sharing. I’ve tired everything you listed over 22 years. I almost went to Cleveland Clinic, but they offer everything in LA offered there. One of my 7 neurologists speaks highly of Diamond. I’ve tried every drug out there including CGRP Aimovig which gave me multiple infections, wiped my immune system, so when I had emergency surgery on infected tonsil (from Aimovig), I got sepsis, double pneumonia and a super bug in ICU, basically died to came back. So no more new to market drugs.

Need to try Rolfing for upper body muscular issues which is common w NDPHers. Quite the journey.

Oh sweetheart, I know there are many, many people who have headaches everyday with migraines intermittently including myself. I was even treated by one of the best headache clinics in the world called the Diamond Headache Clinic in Chicago. I was hospitalized there at least 7 times and found other people with the exact same issue but usually with another serious illness like Muscular Distrophy. So as horrible as I felt, it gave me a new perspective. I’ve had daily headaches and severe migraines for 46 years and feel like a pharmaceutical guinea pig. I’ve been on every class of antidepressants, atypical antipsychotics, pain meds, you name it. I was using Imitrex self injections back in 1992. Nothing helped. I finally resorted to seeing a pain management physician, who is a physiatrist. He had me on methadone which obviously helped but it was the only pain medication that I needed less and less of until I didn’t need it. But my doctor started giving me Botox injections which helped me significantly. I only took ibuprofen and occasionally Amerge (naratriptan) for the migraines and I’ve been headache free for at least 8 years. I’m having some breakthrough pain as of recent, but am going to try a nerve block tomorrow. One of the very few things I have not tried and believe me, I’ve tried everything. Acupuncture, acupressure, massage, strict headache diet, biofeedback (extensively), chiropractic, dental mouth guards, nerve ablation, DHE 45 treatment, hospitalization, and every drug you could possibly think of for headaches, migraines, and pain in general. Seriously the list is long over 44 years. I’m 68 now and eventually qualified for Social Security Disability but that keeps you very poor and unable to afford living alone, not that I’d want to right now, but I could easily see myself becoming homeless as a result of everything I’ve been through and the cost associated with my pain. I often wish for something like cancer so I know if I couldn’t be helped that the end would be near. It’s a hard, hard journey that I’d never wish on anyone. You are not alone.

What is NDPH? So many responders use acronyms that none of us know.

Thank you for sharing. I’ve tired everything you listed over 22 years. I almost went to Cleveland Clinic, but they offer everything in LA offered there. One of my 7 neurologists speaks highly of Diamond. I’ve tried every drug out there including CGRP Aimovig which gave me multiple infections, wiped my immune system, so when I had emergency surgery on infected tonsil (from Aimovig), I got sepsis, double pneumonia and a super bug in ICU, basically died to came back. So no more new to market drugs.

Need to try Rolfing for upper body muscular issues which is common w NDPHers. Quite the journey.

Yikes! I thought my 22 continuous years was long. I actually know the date it started, MLK Jr day (back when I could still function enough to work).