Hi everyone, it's good to find this forum- I hope to find some solace or direction here! I'm 20 years old, and eight months ago to the date I got hit with a slew of very intense symptoms in my head that have not gone away and are still undiagnosed after months of tests and doctors. I'm in a very frustrating, hopeless place and just want my young life back, but I won't get into that as I'm sure you all understand.
Here is quick rundown of my symptoms and their timeline- My first symptom was INTENSE HEAD PRESSURE, like my head was filled up with air like a balloon and being squeezed at the same time. It would last up to a whole month with no break. I then started to get what I consider the second most intense symptom next to the head pressure, a BURNING SENSATION IN MY HEAD. It's not on my scalp, it's literally like a burning pain in my head. And it moves around but can be both sides. It's somehow worse than pain. I assume it's a nerve pain, but I know absolutely nothing about my symptoms yet. This would only last a few days in the beginning, but the head pressure let up after about three months and the burning became the most intense symptom and then THAT started lasting months at a time without a break, and that's been happening since January. Only tonight, which has lead me here, has the head pressure come back with a vengeance. I was actually on a "mild symptom" three day streak, so hopefully this lets up earlier than a month. The other main symptoms I get I consider secondary to these ones but add to the shitstorm: TINGLING IN MY HEAD, BUZZING/VIBRATING IN MY HEAD, INTENSE DIZZINESS/VERTIGO SPELLS THAT LAST DAYS, LIGHTHEADEDNESS, HEAVY HEADED BRAIN FOG FEELING (FEELS LIKE IM BEING PULLED INTO UNCONSCIOUSNESS), SCARY SLEEP ISSUES LIKE AUDITORY HALLUCINATIONS AND HEAD PRESSURE FILLING UP MY HEAD WHEN I CLOSE MY EYES, and then some. In the beginning, I even had TINGLING ON MY TONGUE. Also, two other things that have been around since the beginning and would have to be connected in my mind (but I don't know how) are the rash on my neck that is NUMMULAR DERMATITIS out of nowhere (had it biopsed, still don't know the cause) and A SINGLE, PAINLESS, SWOLLEN LYMPH NODE IN THE BACK OF MY NECK (POSTERIOR CERVICAL I believe)- it's been there for these whole eight months!
Nothing so far touches the pain or discomfort. I have been on Nortriptyline for a month and have not seen any difference so far. Tiger Balm Muscle Rub or ice are the only things that take the edge off the burning in my head but never takes it away. I am trying acupuncture and it's relaxing but have not done it long enough to see a real change. I got my anxiety under control within the first few months, and am out of work, so the only stressor in my life is this. I see a therapist regularly and she does not believe any of this is psychosomatic. A rheumatologist suggested Fibromyalgia since I had an autoimmune problem as a kid (Localized Scleroderma) and have chronic back pain/costochondritis, but really my symptoms are all physically in my head and not "widespread" as Fibro is. My neck and shoulders are SUPER TIGHT despite all my efforts to relieve the tension.
Does this sound anything like you? I'm in doctor limbo and just want them to at the very least do any more imaging that they can just to be sure. I'm just so so sad that I only get three days out of the month to live my life and they are generally spent too exhausted from my body working against me all month to do anything. I'm afraid of going out, especially alone, because my symptoms are so unpredictable.
It's like living inside a ticking time bomb. And I never know what's serious and what's not. And the ER never helps because I'm too complicated. I could rant forever about all of this as it's all been so traumatizing. But I know many of you get it, and I am so sorry you are in this Hell too. We deserve better.
Any feedback, solace, thoughts are appreciated. Thank you.