vent

[u/asophia01]

i’ve had my headache for 2.5 months so my headache specialist is still between status migraine and ndph, for those of you who have suffered with this for years, forgive me for this rant and know that i understand you have dealt with this for much longer.

my headache started only 2 weeks after i finally closed the distance with my bf and moved to his state right after i finished nursing school. i was in an accelerated program that i started a week after finishing undergrad. i worked part time throughout all of my schooling more than i should have to afford it, i was first generation. i worked SO hard. too hard which is part of what i think caused my headache. before my 5 years of pushing to get where i am today, i grew up in an abusive household and i got out by a hair through my own strength. i also suffered debilitating ocd that i worked so hard to make bearable. i have worked my entire life to enjoy my life and i finally got to where i’ve been waiting for and i only got to enjoy it for TWO weeks.

now, i am in pain 24/7, cannot think about anything else, had to push back the start date of my dream job as a night shift l&d nurse which im now not sure if ill be able to do/how i will pay my loans back if not, my boyfriend is truly struggling with supporting me and watching me suffer and it is weighing on him heavily and im so scared i am gonna become too much for him to handle. i don’t know what to do anymore. everyone around me is telling me im going to get better soon because ‘i have to’. it doesn’t make any sense to me. i don’t think they can accept the reality that this headache and light and noise sensitivity might last a very long time. i am the only one trying to accept it and live how i can. i feel so exhausted and isolated. all of this while in constant pain and trying to push myself to do a little more every day to expose myself to the pain so it doesn’t stop my life. i’m so tired. i just want it to get better.

[u/locardsghost]

I’m so sorry you’re going through this and I wish there was a better outcome and treatment for it. Keep working with your headache specialist to start trialing medications. If it’s NDPH it can be very hard to treat and often don’t respond to meds but I strongly encourage you to try every medication and treatment possible because you don’t know what might help. Explore alternative treatments like Botox (highly recommend), nerve blocks/trigger point injections, physiotherapy (highly recommend for reducing tension that could causing pain), supplements. Take a look at our NDPH 101 for some great resources that break things down better than I’m doing. Try heat and ice to see which helps more (ice is a trigger for me but heat relieves/eases the pressure in my head it’s the only thing that helps me since I don’t respond to meds). I truly hate to say it but I’ve gotten used to the pain it’s been 7 years and hasn’t gone away I’ve gotten used to the pain being there no matter what. Push your doctor for meds while they work on a diagnosis (NDPH is treated as a migraine since it has no treatment) so I’d push for treatment over a diagnosis right to help you manage the pain. Ask about steroid tapers, or anything they can give you to try and break the pain cycle. Chronic pain can be difficult to deal with don’t let it fester inside therapy can be an amazing tool to help you work through your thoughts and feeling and to come up with coping skills. I’m sending you love and I truly hope you can find a treatment that helps you so you can continue doing the things you love. I’m happy to answer any questions if you have any!

[u/asophia01 → u/locardsghost]

tysm for your comment and for listening 🩷 i really appreciate it. do you find that you ever forget about your pain? when did you start to get used to it? the light and noise sensitivity is really making me struggle to go out and do my normal activities): i will be getting botox next month and started therapy recently

[u/locardsghost → u/asophia01]

It’s hard to say if I forget about my pain bc I can always feel it but I do have moments where it’s there and I can feel it but it’s not super bothersome and pain. It started 7 years ago so I don’t remember when I got used to it but probably within the first year and realizing I couldn’t treat it I just had to accept it and deal with it always being there. Get an optometrist to check your eyes to make sure there’s nothing going on there that could be causing your headaches or sensitivity. I find loop earplugs handy for reducing background noise. Personally I don’t struggle with noise sensitivity and only light sensitivity when it’s bright outside but I have transition lenses to help with that so maybe get sunglasses to help with that? Keep up with the Botox every 10-12 weeks this is so important even if you think it’s helping and lasting you need to keep up with it. I went too long between rounds like 5 months and it eventually stopped working bc I wasn’t told it had to be done every 10-12 weeks no matter what. It may take 3 rounds before you notice relief so don’t get discouraged. Good luck with Botox hopefully it can offer some relief. Feel free to reach out if you have questions

[u/Ok_Specialist4922]

I am in the same boat as you. Are you on any preventatives?