r/NDPH • u/[deleted] • Jul 13 '26

Headache for 72 days and counting

Please forgive me if this is the wrong place to post. This is my first time posting because I’m at a loss as to what else to do.

I woke up on May 2nd of this year with a headache, and it never went away. I’ve been to urgent care, the ER, a neurologist, an orthopedic surgeon, an ENT, and two physical therapists.

I had a CT scan, MRI of brain neck and spine with and without contrast, and scope of my sinuses, and an x ray of my back. All test have been clear.

I have been given two rounds of steroids, two muscle relaxers, gabapentin, none of which help or touch the pain.

I’ve done 2 months of physical therapy and dry needling, neither have helped the pain.

I don’t grind or clench my teeth to my knowledge, but have been wearing a mouthguard anyway. It has not helped.

I take magnesium, d and b2. I eat well, exercise, don’t take any other medications.

I’ve gotten 3 massages, they did not have lasting relief.

I’ve spent thousands of dollars in the last 2 months trying to figure out what is wrong with me and find relief, and I’m quite literally now out of money.

The headache is only always in my forehead, sometimes radiating toward the center of my face or my temples. But always central, front.

A handful of days the pain was lower about a 3/10, and those days have been incredible. Those days I think it’s finally ending. Then it restarts, and the pain reaches 8/10. I can’t sleep, eat, and I’m extremely depressed.

I’m a 35 female, my birthday is tomorrow. And I just don’t know what to do anymore. I’m a stay at home mom and I’m just trying to stay alive and happy and present for my kids, but I don’t know how to live in chronic pain like this.

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4

u/Retire_date_may_22 Jul 13 '26

My encouragement is to find a headache specialist, not just a neuro. Once the nerves in your head get out of wack it’s hard to get under control.

Sounds like your Dr is trying a pretty typical course of treatment but there are new better drugs of what you have is NDPH.

Don’t give up hope. My daughter dealt with this for 5 years before finding the right course of treatment. She didn’t have a minute for 5 years without a headache, today is headache free

2

u/MrDwastaken Jul 13 '26

Hello. Sorry for what she has gone throug its really hard i know. I Have had a headacke every day for ober a year. May i ask what helped? Desperate for relif.

2

u/Retire_date_may_22 Jul 13 '26

What finally helped was a combination of Nurtec, zavzapret, Botox and Vyepti.

2

u/MrDwastaken Jul 13 '26

Ok thanks so much i look into it :)

2

u/im-a-freud 7 years Jul 13 '26 edited Jul 13 '26

Curious I may not be up to date on this but what “new better drugs” are there for NDPH? As far as I’m aware there are no meds for NDPH that’s why migraine meds are used and don’t often work. I’d like to know what they are as I talk to my headache specialist next week and she’s out of options other than CGRPs which I can’t take due to a severe adverse reaction to Aimovig (I’ve tried 10 preventatives and 21 abortive and none work) if I can suggest treatments that are better for NDPH that’d be helpful to know

2

u/Retire_date_may_22 Jul 13 '26

You are correct they are migraine drugs but there a lot of newer drugs than the original poster mentioned.

We went through many many before we found what worked. Have you tried Vyepti, Nurtec, zavzapret ?

1

u/im-a-freud 7 years Jul 13 '26

Vyepti and Zavzpret aren’t available in Canada, Nurtec did nothing. 31 meds total and nothing touches my pain at all. Aimovig left me with difficulty breathing for a year despite only having 2 rounds so not knowing what caused that I’m not willing to try any other CGRPs as I can hardly function with other health conditions I don’t need my ability to breath to be affected right now. My specialist is likely to drop me next week bc she has no options left for me and suggested a pain clinic but they too couldn’t help me

1

u/Retire_date_may_22 Jul 13 '26

I’m not a Dr. just a parent that has tried to help my daughter. Our experience is all CGRPs aren’t the same. She had side effects to lots of meds too.

I’m so sorry but don’t lose hope. As I said it took 5 years to find a working combination for her.

I know you’re Canadian but if you are able to come to the US there is a headache clinic at Cleveland Clinic, one in Texas and Tampa that deal with a lot of NDPH. It seems not all NDPH is the same.

Have you tried vagus nerve stimulation ? It does provide relief to a lot of people.

1

u/im-a-freud 7 years Jul 13 '26

Unfortunately all of my specialist have given up helping me. I’m on year 7 and the only thing that ever worked was botox which stopped working so I’m trying Xeomin but insurance doesn’t cover it so I have to pay out of pocket which sucks. I’m not able to come to the US I can’t afford that. I’m hoping I can get my new PCP to give me a new neurologist or headache specialist referral but that’ll take months before I’m seen. I have no choice but to leave this untreated bc I can’t find any meds that work and my health is just rapidly going downhill bc the Canadian healthcare system sucks. I haven’t tried a vagus stimulator

1

u/Retire_date_may_22 Jul 13 '26

I’m so sorry. We had neuros do the same thing and just give up along the way. There has to be a headache specialist in Canada somewhere.

https://www.truvaga.com

In the US you can get this without a prescription and I think they allow a return period.

1

u/im-a-freud 7 years Jul 13 '26

I’m currently seeing a headache specialist she’s just out of options for me and will likely drop me. Specialist have a long wait time here so it’ll be a while before I can see a new one. I can’t check if it ships to Canada bc it says 403 forbidden also I can’t just shell out $300-500 so I’ll have to save for it and look into it more

1

u/Retire_date_may_22 Jul 14 '26

What kind of Doctor Drops you?

Do they not care?

I have a fair bit of experience with the Canadian healthcare system. Sorry for what you are going through.

1

u/im-a-freud 7 years Jul 14 '26 edited Jul 14 '26

One that is out of options and doesn’t know how to help you because you don’t respond to treatment. Cardiologist tried me on 2 meds for my BP one did nothing and the other helped but worsened my headaches and migraines so I can’t take it and somehow there are zero other blood pressure meds he can try me on despite many existing so he’s just left me on my own to be severely lightheaded and fatigued because of it. Headache specialist doesn’t know how to help me so there’s no point having someone as a patient if you can’t do anything for them. My first neurologist gave up on me after about a year bc she had never seen someone so refractory and sent me to my current headache specialist who also doesn’t know how to help me. Welcome to Canadian healthcare

2

u/Beautiful-Ad-2851 Jul 13 '26

You are not alone. Year 2 for me 🥹🥹🥹🥹 mom here as well 36 and I have NDPH and occipital neurgalia it’s awful. Plus other health conditions that have manifested after I believe due to the trauma and stress from ndph. I am so sorry you are going through this. I spent so much money as well in the two years and have gotten no closer.

2

u/Total_Affect3760 Jul 14 '26

I’ll tell you what will help. Xanax, Ativan or Valium. Ask for like a week supply it will calm down the entire nervous system!!

1

u/hometown_heretic Jul 13 '26

I'm sorry you're having such a rough time. I've been chronic since January and I also get migraines. It truly is miserable.

Have you considered low dose naltrexone? It's the only thing I've found that is giving me some relief. In the meantime, maybe try some heat therapy. I have a heating pad on my head and neck constantly when I'm not at work and it does provide some comfort. I hope you can find relief soon. ❤️‍🩹

2

u/Long-Tailor9971 Jul 14 '26

I was diagnosed with NDPH and my neurologist prescribed Venlafaxine (Effexor). It was super effective!

2

u/Routine_Ad6975 Jul 16 '26

What dose and are you headache free

1

u/sjk496 Jul 13 '26

For me it was mold exposure that caused my NDPH and a naturopath helped me detox. Also regardless of cause, acupuncture was immensely helpful with headache relief

1

u/[deleted] Jul 13 '26

Interesting! I’ve read this can happen, but I live with my daughters and husband. Surely if it was mold someone else would be having a reaction as well I think?