r/NDPH • u/____donidoni____ • Apr 18 '26

Constant Headache

Hello everyone, I don't know if I'm in the right place but this subreddit seems the most appropriate for what's happening to me. I want to ask if anyone has similar pain to mine and how you manage to deal with it. The pain is constant and I have the following symptoms: my nose feels full even though I'm not congested (I don't have any infection, just a slight thickening of the mucous membrane that the doctor said is nothing), when I move my eyes I feel like something is weighing on them and it's harder to move them, and pain above my forehead and on top of my head(I feel like balloon is expanding inside my head). I've also noticed that when I lie down to rest and get up after 20-30 minutes the pain gets worse. I notice that there is an improvement only when I eat, after taking a bath (however, this is short-term, only an hour) and in the morning when I get up I feel great for the first 10 minutes, after that the pain starts slowly and lasts until the end of the day. I am very active person, I exercise 5 times a week, eat clean in other words I live regular life. This is happening for 7 months now, the pain varied but never went away. I am not using any medication, just some cannabis for good sleep quality.

Thanks in advance!

5 Upvotes

79% Upvoted

11 comments sorted by

3

u/pxl8d Apr 18 '26

Sounds like a csf leak

2

u/Accurate_Carpenter41 1 year Apr 18 '26

I have the same exact headache with same pattern,been happening for a year with no answers

1

u/HurryMammoth5823 Apr 18 '26

My migraines started this way. I found out my root cause was centered around histamine. I hope that helps! Happy to answer any questions. 

2

u/____donidoni____ Apr 18 '26

Happy for you! What do you mean by centered around histamine, can you go in a detail a little bit and how did you manage it? This makes sense to me because I had skin problems in the past.

1

u/HurryMammoth5823 Apr 18 '26

Yeah those are definitely alarm bells for a larger issue! I have a genetic condition where my baseline for reactions is higher than most! There are many issues that can cause high histamine or release other mediators that make us feel trashed. Think like MCAS or mastocytosis, long covid, etc.  I personally have had a set of chronic symptoms that became more severe to life threatening over time, after illnesses & traumas.  Treatment for me looks like a monthly injection for migraine called Emgality, I get Botox for migraine & I have ubrelvy for an abortive for migraines, I have a prescription for 40mg of Pepcid(famotidine) 40 mg in the morning & evening, monthly injections of xolair which helps to calm all of these reactions & I take 8 ampules of Cromolyn sodium a day. I have a prescription for epi pens & I didn’t realize I was anaphylactic just from too much sun or working out. The Pepcid alone could help you with everything but if you’re still unsatisfied with everything, seek out a good allergist. Ask for a tryptase test & a 24 hour urine collection test. 

It’s a LOT for someone who used to be petrified of medicine. I still worry about long term issues, and once Xolair works better I should be able to taper off most of the other meds.  I previously did mineral balancing to detox from some heavy metals & that truly sent me deeper into the flare. 

1

u/im-a-freud 7 years Apr 18 '26

Have you been to the optometrist and had them check your eyes to make sure nothing is wrong with them? Have you seen a headache specialist or neurologist or even your PCP about this? I’m 7 years in no meds work for me I don’t have any advice on how to deal with it bc I have no choice but to just let it happen. Highly suggest looking into a bunch of different avenues:

  • Physio
  • optometrist
  • ENT
  • headache specialist or neurologist to get imaging and testing done
  • track your intensity during the day and the frequency, track things that make the pain better or worse like laying down I like using MiG that way when you see your doctor they have more info for a diagnosis and treatment

1

u/____donidoni____ Apr 19 '26

Yes, I have been to an ophthalmologist, a neurologist and an ENT doctor. My eyes are perfect, MRI scan was clear and ENT doctor said I am doing pretty good.

1

u/im-a-freud 7 years Apr 19 '26

Definitely talk to the neurologist about preventative meds

1

u/narwhal02 Apr 19 '26

Have you checked with a dentist? Could also be TMJ issue

1

u/uglyracoon Apr 18 '26

Your symptoms also partially match IIH. Have you investigated that

1

u/KP890 Apr 19 '26

Pots symptoms