Hi, I am an 18 year old woman and for over a year now I have been experiencing a multitude of debilitating symptoms, listed below, that have gone undiagnosed. All of the pain, dizziness and fatigue worsen as the day goes on, and the headaches are always especially bad at night. I had never experienced these symptoms before January ’13.
• Severe pain in the base of my skull, where my c-spine meets the skull and the surrounding area. The pain often radiates to the sides of my head, forehead, and behind my eyes.
• Constant, chronic dizziness and out-of-body feeling. Dizziness is worsened in large/open/busy spaces or in fluorescent lighting (grocery stores are especially painful). It often feels as if it is difficult to “control” my eyes and I almost never feel like I am in reality. It is a similar to feeling of being drunk or high (side note: I have stopped alcohol and marijuana uses altogether, as both worsen the symptoms. I had never used either regularly).
• Chronic pain/tension in neck and shoulders
• Extreme light sensitivity (I have prescription tinted glasses to help neutralize bright lights, but I often need to stay indoors with the blinds closed or in a very dark room to feel comfortable. This even makes watching movies a painful experience.)
• Sound sensitivity (I used to be able to listen to music loudly and did not have a problem in loud places, but now I begin to feel pain if I am not in a quiet area. I also have chronic tinnitus and a clogged feeling in my ears)
• Chronic fatigue and brain fog (it was incredibly difficult for me to focus on my work while in school or to read for extended periods of time)
• Occasional migraines (often right-sided and almost solely occur at night)
• Occasional, very uncomfortable “tingling” nerve feeling on right side of head/scalp (my scalp is also very sensitive, which doctors tell me is common for people who experience migraines)
• Increased, sometimes rapid heart rate (even while resting)
I have been to easily over 20 different doctors-- ranging from neurologists, ENTs, an eye specialist, infectious disease specialist and cardiologist to a chiropractor, osteopath (as well as cranial-sacral) and physical therapist. All of my symptoms began after I had a severe case of what felt like the flu in early January of 2013 (high fever, body aches, chills, cough). At the tail end of my illness, which lasted about a week, I had my first ever episode of vertigo, which landed me in the ER. Soon afterward, I experienced my first migraine, which lasted several days and later morphed into severe nightly headaches, before becoming constant chronic headaches and dizziness. At first, doctors thought it was labyrinthitus caused by the spreading of the virus into my middle ear (an easy answer) but the headaches and dizziness persisted. Benign paroxysmal positional vertigo (BPPV) and vestibular migraines were also ruled out.
I also went through vestibular rehabilitation in the spring of 2013, but discontinued due to a lack of improvement, and actually an increase in the frequency of my headaches. Now I am in PT again, this time for my neck, which seems to be helping somewhat (along with the chiropractic treatment) to at least relieve tension and alleviate some of the pain. But, this seems to only be symptomatic help and I do not feel like I’m getting to the root of the problem.
Before I left for college in September ’13, my neurologist put me on amitriptyline (25mg/day) to help with the pain, and at the time it felt like this medication was a miracle. But by November, I was exhausted all the time and not sleeping well, feeling even more out of it from the drugs. The headaches began coming back more regularly. Next, I briefly tried nortriptyline (another tricyclic antidepressant) and topamax, but discontinued due to undesired side effects and overall ineffectiveness. I began feeling more panicky at night and the drugs felt like they were interacting badly with my heart, especially since I have noticed an increase in my heart rate since all of these symptoms began back in 2013.
I withdrew from school because of my medical condition and am now off all medication and coping with the pain with more natural remedies. But, my neurologist is considering prescribing me a low-dose beta blocker (if approved by my cardiologist) to try to better control the pain. The headaches seem to fluctuate slightly now, meaning that I may have a couple of days here and there where I am feeling a bit better, though never “normal.”
Over the past 14 months, I have had several scans (MRIs and CAT) of the brain and recently an MRI of my C-spine, all of which came back normal. All other testing, including bloodwork for auto-immune disorders and other deficiencies (Lyme and other tick-borne diseases, Lupus, etc) revealed no results. I know that Lyme testing and diagnosis is very controversial, and right now I am strongly considering going down this path and seeing a specialist (though unfortunately they are incredibly expensive!)
I’ve been told several times, by different doctors, that all of this must be caused by anxiety and that my symptoms are essentially “all in my head.” It doesn’t help that it is very hard to explain my symptoms due to their inconsistencies, which sometimes lends to me becoming visibly upset and frustrated in doctors’ offices, further validating their anxiety theories. Before my symptoms began, over a year ago, I was relatively healthy and stable—and though I have battled other medical problems and bouts of depression/anxiety in the past—I find it incredibly hard to believe that everything is merely psychosomatic. Meanwhile, I am currently in therapy to try to cope with some of the anxiety and frequent sense of hopelessness that comes with these sorts of conditions, and may try an anti-anxiety medication soon.
My next steps are to see a headache specialist (at Mt. Sinai Headache Center in Manhattan) and hopefully a Lyme specialist. Otherwise, I am pretty much at a loss. I know this is a ton of information, but any insight or advice that this online community could offer would be greatly appreciated. Thank you all so much!