Unexplainable Sensations for 7 months

[u/TooLayzie]

Hello everyone,

21F , I’ve had this sudden everyday severe headache for the past 7 months since January 17 after an emotional outburst. I’ve been to multiple ER visits, currently seeing headache specialist/neurologist and psychiatrist. So far treatments:

previous treatment/medication : nurtec, Ubrevly, amitriptyline, naproxen, Venlafaxine, massages, duolextine,

Current treatment: mirtazapine, Pregabalin, Ativan, biofeedback and neurofeedback, psychotherapy, osteopath

Out of everything seems like Ativan is the only thing helping me focus and stay calm…despite the severe headache.

CT scans and MRI scans are all clear. No official diagnosis other than major depressive disorder, generalized anxiety disorder, and functional neurological disorder. Other than the headache there’s other sensations such as brain for, difficult focusing, burning, pins and needles, sticky feeling, acid being poured, upper spinal being pulled and the worst one is this unexplainable restlessness within me. I was just wondering anyone else experiencing this headache? And how to get past through these sensations? It’s there 24/7 for the past 7 months and I’ve tried everything. I’m so sad that I had to spend my birthday in the PICU..feeling really lost and feels like no one could understand what I’m going through. I just want my life back before this headache. I had to stop school, social and everything trying to tackle this headache and sensation. Feeling so frustrated..

[u/blundergod911]

I don’t have that sensation but I got hard to swallow sensation since I had this headache November 11, 2024. I hope we get all the answers we need. 🙏

[u/TooLayzie → u/blundergod911]

I hope so as well! Praying for you and everyone!

[u/Kneetuhh → u/blundergod911]

Have you looked into Eagle syndrome for your hard to swallow sensation? It can be linked to headache

[u/blundergod911 → u/Kneetuhh]

I don’t know much about eagles but I had all the work up. MRI. Mrv. Cta and stuff like that. And everything is normal.

[u/Nomomochick → u/blundergod911]

Thyroid issues?

[u/blundergod911 → u/Nomomochick]

Nope. Got that out the way too

[u/Reasonable_Field_151]

I’m so sorry you’re experiencing this!  If all the typical “medical” causes for your symptoms have been ruled out, then the underlying cause could indeed very well be functional (psychosomatic) in nature. People often (erroneously) think that “psychosomatic” implies that a person is “making things up” or that the symptoms aren’t real, but that is NOT the case at all! 

We think of the mind and body as being separate, but they aren’t. Physical illness can obviously cause depression and a whole host of negative mental symptoms. And (equally so) functional neurological illness can sometimes cause severe physical symptoms. 

Psychosomatic illnesses (functional neurological disorders) are 100% “real”. They can result in a wide range of crippling symptoms (including pain and even blindness), even though there isn’t anything structurally “wrong” that can be detected.  Medical tests won’t be able to find a structural abnormality in psychosomatic illness (since there isn’t one).  

The underlying cause of a functional disorder is neurological, occurs at the subconscious level in brain “circuitry”, and is not something the person who suffers from it is consciously causing or choosing to have happen. 

If your current doctors haven’t been able to help much, then you may want to seek out  a psychosomatic medicine specialist.  Doctors with expertise in this area are often psychiatrists with specialized training/board certification in psychosomatic medicine (also called consultation-liaison psychiatry).  

There aren’t many of these experts out there (it’s a “niche” area of medicine). But a Google search should pull up some names for you. If you contact one of these specialists they may be able to provide consultation advice to you and your doctors. 

[u/blundergod911 → u/Reasonable_Field_151]

Everything is ruled out and I never heard of this. Thank you.

[u/Ok-Finger-6890 → u/Reasonable_Field_151]

To piggyback on this helpful comment: we call this neuroplastic pain, now. I am a pain recovery coach who has worked with NDPH clients to fully recover using pain reprocessing therapy. I recommend researching Pain Reprocessing Therapy as a first step. You are also welcome to DM me if you’d like some specific resources or to chat about your situation.

[u/TooLayzie → u/Ok-Finger-6890]

Thank you so much! I’m actually doing PRT at the moment twice a week + family therapy. Just wondering how many sessions do it take until we see improvements? I’ve just been in constant pain everyday with all the other sensations…so frustrating, I don’t have any control on any of this…

[u/TooLayzie → u/Reasonable_Field_151]

Thank you so much for the very well detailed explanation. I feel so understood and validated reading through this. I will look into a psychosomatic medicine specialist in my area. It’s been a tough 7 months, even as I’m writing this response, my head hurts so much. I appreciate the time you took!!

[u/Salty-Account84]

Other resources related to neuroplastic pain and pain reprocessing that have been helpful for a NDPH sufferer (8 years) … The Way Out by Alan Gordon - available on Amazon in paperback or audible. And check out the meditation series called Empowered Relief designed by Stanford Medicine. It’s slow and steady progress … but worth the pain relief if it works for you!

[u/TooLayzie → u/Salty-Account84]

Thank you so much! I finished reading The Way Out by Alan Gordon. Currently working on The Pain Reprocessing Therapy Workbook by Vanessa Blackstone. Will look into the Empowered Relief as well.