I’ve recently added two new diagnoses to my ever-growing list of chronic conditions so I thought I would share with you guys what’s been going on and see if any of you have dealt with the same conditions.
As mentioned in my video, below are some resources relating to cerebrospinal fluid leaks and intracranial hypertension, and how these conditions are linked to fibromyalgia, chronic fatigue syndrome and Lyme disease.
Cerebrospinal fluid leaks aka intracranial hypotension
If you’ve been diagnosed with POTS (postural orthostatic tachycardia syndrome) or migraine, I would highly recommend watching Dr. Carroll’s video below. CSF leaks are often overlooked by physicians because they are rare and difficult to find on imaging. Many of Dr. Carroll’s patients recover after being properly diagnosed and treated for their CSF leak.
The most common symptom of a CSF leak is positional headache that feels worse when you’re sitting/standing and better when you’re lying down. The headaches tend to radiate from the back of the head to the front.
Dr. Carroll’s video below includes a simple at-home test that you can do to see if you might have a CSF leak.
From the video description: “Many people who suffer with chronic migraine live with symptoms that are baffling — headache, nausea, neck stiffness, ringing in the ear — and all of these symptoms worsen as the day goes on as the individual spends more time in the upright position. However, symptoms improve as long as they are lying down. In this talk, Ian Carroll MD, discusses an often overlooked diagnosis that can be treated — spontaneous intracranial hypotension.”
Intracranial hypertension aka pseudotumor cerebri
In intracranial hypertension, there is often a feeling of fullness in the head, almost like your head is an overfilled balloon or you have a sinus infection with the stuffy nasal congestion. Other symptoms include neck pain, blurry vision or loss of vision, pulsatile tinnitus (a whooshing sound or hearing one’s heartbeat in the head), eye pain, jaw pain, nausea, dizziness, cognitive difficulties, etc.
Studies have linked intracranial hypertension with fibromyalgia and chronic fatigue syndrome. There also is a connection between intracranial hypertension and Lyme disease, according to my Lyme/fibro physician.
Chiari malformation (my new diagnosis)
From the International Chiari Association:
“The symptoms of Type I Chiari malformation can be similar to other disorders and can vary greatly from one patient to the next, making diagnosis difficult. The hallmark of this problem are headaches and neck pain, made worse by valsalva, coughing, sneezing and straining. The intensity of headaches and cervical pain can be completely debilitating. Fatigue is common and, as the condition progresses, patients may develop vertigo, tinnitus, nausea, dysphagia, impaired gag reflex, muscle weakness, poor coordination, restless legs, upper extremity paresthesia, dysautonomia and, in severe cases, paralysis. Often patients are diagnosed with fibromyalgia or chronic fatigue syndrome, which delays diagnosis of Chiari malformation. This is unfortunate because surgery can be very effective.”