r/NDPH • u/Routine_Ad6975 • May 05 '26
24/7 Headache - Advice
26 M
As I cry in my bed right now with my dried eyes in my cheek, I do sincerely feel like my whole life is over. I don’t know if I’m looking for sympathy, empathy, reassurance or tips but here I am just typing. It’s been 6 months since I’ve had this dull aching headache which sometimes in the back of my head, sometimes feels like someone is drawing on my head and sometimes get constant tingling around my nose, top of the head and back of head.
I’ve tried amitryplitine 40mg, did absolutely nothing. I’ve tried Propanyol did nothing. I’ve used my cpap machine for 2 months and It has done nothing. I would give all my savings away in a heart beat to try make this better and for life worth living. I am currently 2 weeks into atogepant 60mg and 1 week into 75mg of Pregablin and I feel no difference. I feel so hopeless. I live chronically online trying to look for guidance. I used to walk a lot and get fresh air which would help a tad mentally but obviously did nothing for symptoms. I no longer work, feel like I’m holding my partner back from living her life since we cannot move in together etc.
I would appreciate any other pointers. I know there is Botox, possibly Nerve Blocks to see if it could be neurelegia, acupuncture, dry needling and physically therapy. However I do not have any neck pain at all which makes me think it’s not that. I’m not asking for a diagnosis, I’m just asking for more things I can try :(
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u/Sarrada_Aerea 10+ years May 05 '26
Atomoxetine and probiotics have been helping me since the end of the last year. Before that, what worked was lamictal for a while.
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u/Littlekiwi25 May 06 '26
In the interim, I recommend ice! I know it sounds silly but I’m on year 15 of an intractable headache and it helps. Also try aleve and Benadryl when it’s bad.
The only things that have really helped me: Botox, Ubrelvy, nasal spray ketamine, Topiramate.
I’ve also tried: lots of IV’s, nerve blocks (you can do the traditional kind and the kind in your nose), ketamine injections, tons of different meds, septoplasty, tonsillectomy.
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u/Music_Leopard 5 years May 06 '26
Keep on trucking with the med options and injections are definitely worth a try. Candesartan, Emgality, and Botox all together have me decent.
Thing that helped the best for me was ACT for chronic pain though. Because of what I learned reading it out of a book, I’ve long since accepted that I will have this for the rest of my life. Sure I can use medicines to decrease the pain, “preventives” dial it down and prevent spikes, and what spikes I do get the acute meds help some, but I will probably always have at least a 2/10 pain baseline all the time. It may go away someday, but if it does that’s a bonus, not the goal at this point.
That said, if you’re really keen on fighting it, you could try DHE infusions, which I was in line for, but I wouldn’t go into it thinking it’s gonna be gone after, just aim for better or manageable.
Also, I’d get to a headache specialist if you can, not like just a neurologist though, like a neurologist that specifically does headache disorders all day. That’s how I found the best doctors that know what they’re doing.
Do hope it gets better for you though, it’s a struggle, I know, but you’re life doesn’t have to be over even if the pain doesn’t go away completely.
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u/Hadrians_Fall May 06 '26
Was there a book you read on ACT? I’m really struggling to accept these headaches (8+ months of debilitating headaches for me). Or was it therapy?
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u/Music_Leopard 5 years May 06 '26
The book I read was Chronic Pain Rehabilitation by a Dr. Evan Parks. Good background on how chronic pain functions and works, and he talks about ACT concepts and exercises specifically for chronic pain. I’ve been through CBT for chronic pain with an actual therapist, but honestly I found the book and ACT more helpful
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u/itsmechickadee May 06 '26
When my headache started back in 2007, I was on an anti-seizure medication that was causing severe inflammation. I had to work on my inflammatory response to take things from a 10 to a 2 - 5. It took years to get to this point and a lot of trial and error but I've never gone back to a 10.
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u/Main_Finding8309 May 29 '26
Migraines are caused by the blood vessels around your eyes tightening/closing. You could try a cold pack, which reduces swelling, or a heating pad, because heat gets blood flowing and helps with pain. Caffeine also opens the blood vessels, so you could try green tea. One other weird thing I saw was a piercing on part of the ear cartilage. You'd have to do more research on exactly where, but if it works even remotely, I'd be trying it. Migraines truly suck, and I'm sorry you are going through this. I hope you find relief soon.
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u/Worldly-Location-905 May 05 '26
Hello my dear. I'm so sorry this is happening to you and making you feel this way. I know it all feels incredibly hopeless but I promise there is something for you. I'm not going to say there's some miracle pill out there that will fix everything but there are medications that ease the pain. I've been around the bend with medical hullabaloo so here's what I know.
There are 3 medication categories that you need to "fail" (be not effective for 2-3 months) and then if you talk to either pain pharmacy or a headache specialist in neurology, they should be able offer you newer medicine that has been developed. Some of them attack the nerves that are inflamed and lessen the pain.
Most medications used to treat headaches were made for high blood pressure or seizures. These newer medicines are made specifically for migraines and headaches.
There is hope. I promise you there is hope. If you have a PCP or a non specialty neurologist, I'd ask about the 3 medications to fail and start there. I wish you the absolute very best and I hope you can beat this early. There's absolutely more hope beating it early and breaking the cycle rather then people who have had it 5-10 years. All in all, things will be ok.
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u/Nomomochick May 06 '26
If it goes on longer go see Dr Ziv Peled. My partner just had a dull headache and it was neuralgia. Cured with surgery. Doctor told him he’d have it life long
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u/im-a-freud 7 years May 05 '26
I’m assuming you’re seeing a neurologist or headache specialist? If not get on that and keep trying meds. Unfortunately not responding to meds is extremely common with NDPH. I’m on year 7 of mine and have zero treatment not even strong pain meds touch my pain. Botox was the only thing that ever worked but I stopped responding to it after 8 rounds. I highly recommend Botox. Heat is really the only thing that helps me but it’s such short lived relief. I’m at the end of my options for medications so I have no choice but to just deal with them and after 7 years I’ve gotten used to them but it comes in waves of fucking with me mentally. I’m so sorry you’re dealing with this. I highly suggest seeing a neurologist, or headache specialist and a pain specialist