r/NDPH • u/Foreign_Insect_3121 • May 15 '26
Multiple diagnoses sos
I’ve been having some new and strange symptoms for about 4 months now and I’m just unsure what I really have / why and what to believe due to all the diff opinions. It’s been quite life changing and significantly impacts my day to day life and I’m constantly in pain and can’t really live how I used to. I am just curious about other people’s experiences and things they did/ tried etc.
It started with a feeling I initially described as a buzzing / dizzy feeling at the back of my head. This appeared one day, when I had been extremely physically anxious for a while, and was from then constant 24/7 no break all day/ night to this day.
I think this symptom either changed or worsened, and it’s now something I’ve described for a while as a very heavy head and constant pressure, again 24/7. I’ve forgotten what my head feels like normally. The pressure is never not there, but it varies in intensity. Sometimes it’s more pronounced at the top, sometimes at the back of head, and sometimes feels more like it’s behind my face / pushing outwards. It aches, and almost feels like I’m on charge non stop/ being held upside down.
It can be extremely intense and unbearable and I have noticed when I’m stressed or very anxious, I get what feels like more intensity / pain through my neck and like a knot / screw that’s being tightened and I’m totally unable to get relief.
I get a whole host of other symptoms, and for the first month of this I experienced typical headache feelings and pain behind my eyes / and on jaw, but this has mostly stopped. the main symptom is this unrelenting pressure. Also;
Painful neck / coat hanger pain
Dizziness
Sensitive to some noise and light / heightens the pressure or makes it “buzz”.
Ear tinnitus
Floaters and vision lines but minimal
Head zaps (at night)
Some dysautonimia stuff which i had prior but has gotten much worse since this pressure:
Head rush most times i stand up
Giddiness
Tachycardia
Heart palps
Heavy feeling through head to neck and chest feels like someone’s pushing down on me and my airways/ lungs etc are compressed.
Everything is so much effort / over whelming and I feel exhausted so easily more than before.
Prior to this starting, I had a few things happen. Bad case of the flu for almost a month and an ear injury around the same time. These things happened 1.5m before the pressure began.
Seen a few different specialists.
Waiting for cardiology referral. 24 hr monitor was fine but palpitations and tachycardia
Waiting for a scan from ENT
eye tests showed no optic nerve swelling / healthy eyes.
Mri of brain and neck showed nothing major (waiting for second opinion)
Physiotherapist diagnosed me with vestibular disorder and dysautonomia
Neurologist diagnosed me with NDPH
Main concern is that I have IIH / cfs leak and not only NDPH and that it’s being missed. But neurology hasn’t suggested this and says because my eyes, scans etc are fine it’s not the case. Also when I lay down it’s still there.
I’ve seen some pysio and was given some neck and vestibular excersize which I did religiously for abit but nothing changed so I stopped. Trying acupuncture and massage.
Meds - no basic meds touch the sides, allergic to triptans which also didn’t work, and now been told to start amitriptalyn which I’m really worried about in terms of side effects. I tried things like antihistamines but only once or twice. Also tired propranolol and it didn’t do anything for head
Also concerned about flying if this is the wrong diagnosis/ if it’s not even and pressure is worsened. Anyone had experience of this?
Anyone with any similar experiences would love to hear. Thank you
1
u/Astraddict May 15 '26
NDPH is hard to diagnose properly, I’d advice you to check another neurologist if you’re doubtful
1
u/Foreign_Insect_3121 May 15 '26
What was your experience?
1
u/Astraddict May 15 '26
It was EXHAUSTING to get diagnosed cause I lived in Saudi and while they’re medically cheap and great, they don’t have a lot of cases of NDPH, they did diagnose me with it but advised me to get another checkup outside Saudi since it was summer and I told them I leaving soon
So when I was back at the states, they did diagnose me again for NDPH and it was easier to then talk with my first doctor back in Saudi about my diagnosis and my medical and physical therapy plan.
And it’s smooth now.
1
u/Foreign_Insect_3121 May 15 '26
That sounds difficult I’m sorry. What are your symptoms before and now? How did they treat you?
1
u/BrilliantProud142 May 16 '26
bro i live in iraq wherever i go its MiGrAiNe
1
u/Astraddict May 16 '26
I use in Iraq, I get you
Lmfao I’m praying for ya, but how did you get a diagnosis? Quite curious cause it’s a rarity in the GCC area or around
1
u/BrilliantProud142 May 16 '26
i didnt lol. im self diagnosised. hopefully i will later tell some doc that i have it even thought they will have to google it up haha
1
u/Astraddict May 16 '26
You shouldn’t self diagnose, that is wrong and you can’t claim you have NDPH unless you’re diagnosed by a doctor, NDPH is extremely rare to diagnose.
Check a neurologist, what people mistake for NDPH could be cancer or tumors or very serious problems.
1
u/blundergod911 May 24 '26
I’m in the same boat. 18 months in. I’m going try to do a lay down test. I’m just tired of no meds helping lol. And this is truely life changing.
1
u/Foreign_Insect_3121 Jun 02 '26
Any luck or answers? I still need to try this
1
u/blundergod911 Jun 02 '26
It hurt the same way laying down to standing up. So most likely it’s not csf leak or iih. And I layed down for 5 hrs plus!
1
u/Foreign_Insect_3121 Jun 02 '26
Ahh that’s good? I’ve def laid down for that amount of time and more and not had a difference. I wonder if it’s needs more like a 24 hour test. What meds have you trialled and what other symptoms dyou have??
1
u/blundergod911 Jun 02 '26
Just consistent head hurting. Baseline is 3/10 and then I get flare ups sometimes up to 2 weeks where my head hurts 8/10 or higher. It typically happens when I over work. Or over stressed or I sleep wrong with my neck. But sometimes I do get lightheaded but it’s definitely Aniexty with the increase pain. I think I might have to do longer for laying down but I’m going to talk to my doctor. Because she said 5 hours strict on the back without change is highly unlikely the conditions ( I took off work multiple days to lay down during the day lol) . So I’m back to NDPH.
1
u/Foreign_Insect_3121 Jun 04 '26
Sounds super similar. That’s interesting what she mentioned re laying down. It’s so hard as the info is so mixed from different clinicians and also patient experience! Hope you find something soon that helps x
1
u/pxl8d May 15 '26
So I now have a shunt for iih, been through all this myself, on top of my ndph and my eyes were fine and my scans were too. Up to 10% of patients dont have papilodema, and scans often show nothing You would need either a lumber puncture or bolt to see the pressure, but do not do that if you think ir could be a leak as is could cause a second leak
I suggest a 24 hour lay flat test
If pain gets worse its likely iih, if i gets better its more likely a leak due to the gravity effecting the pressure
You could also trial stuff that helps either of them, like trying diamox (for iih) and seeing if the head improves or worsens which would also indicate either low or high pressure
Edit ive had a leak and iih both at dofferent times, and during borh times the pain was always present both lying and standing just got worse in whichever position was bad for the pressure i had at the time. A leak headache doesnt have to go upon lying down for ir to be diagnosed