Thread of Depression


Have you ever wondered which SS symptom is the most commonly shared and often the most incapacitating? Sensorineural Hearing Loss, Ataxia, and Myelopathy are all horrible. Statistically, 50% of SS patients will have to cope with at least one of the big three if not more.   It may surprise you to find out the most common clinical symptom Superficial Siderosis patients will suffer from is depression. Not everyone falls head first into a pit of despair, but the battle for your health wears down even the most optimistic person. As your disability progresses stressors take over; Slowly your quality…

Continue reading….

The Neuropathy Chronicles 2.0

Peripheral Neuropathy Symptoms   Hello Pain, My Old Friend You might remember from one of our earlier posts, The Neuropathy Chronicles, how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years later TCM is still the winner. We saw for ourselves how true this was during early spring when the electrical system of Gary’s heart (more on this later) decided to join the party. Complications led to pulmonary embolisms in five lobes of his lungs and long-term coagulation therapy. The TCM herbal blend Gary uses stumped the VA pharmacists. He cycled…

Continue reading….

Railroad Spike: Chronic Headache Pain

chronic headache pain

Living With Chronic Headache Pain Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. The not so good days it feels like a hot railroad spike through the base of your skull sprinting up to your eyes. Pain that radiates into every part of your head creating excruciating agony.   It’s A Headache Not A Marathon Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes…

Continue reading….

The Neuropathy Chronicles

Neuropathy: Burn Me, Stab Me, Shoot Me We touched on our search for some relief from peripheral neuropathy in our August blog post, QUARTERLY NEUROLOGY FOLLOW-UP. You’ll find an explanation of the type of neuropathic pain connected with Superficial Siderosis in MANAGING NEUROPATHIC PAIN. Sharp jolting stabs of burning pain across one or both feet was making it impossible to sleep. A short trial run of the prescription medication Lyrica was discontinued due to some very off-putting side effects. We were trying to avoid the opiate road for as long as possible, so in August we turned to Traditional Chinese…

Continue reading….

Punching Through the Brain Fog

brain fog

Brain Fog and Stress Brain Fog  Stress  Anxiety  Depression We’ve both been fighting a definite lack of focus.The last few months have not only been busy but very stressful for us. We headed into the summer months not giving much thought to the immediate future. Health wise things were leveling out so we felt we could focus on refining the details of our life. A three-week bout with pneumonia and bronchitis proved just how tough dealing with illness could be with a compromised immune system. A beloved sister faced the re-occurrence of her cancer. Her battle was short and as about…

Continue reading….

Eye on Nystagmus

Eye I. By Thomas Tolkien

Eye on Nystagmus We were sitting in the exam room at our ophthalmologist yesterday, and I wondered Why is it so many of the SS related conditions seem impossible to pronounce without a medical degree?  Silly, I know but I never take the time to find what the actual pronunciation is. I’m always disappointed when a doctor comes in talking away, and I think, wow, that’s not even close to how I imagined it. Nystagmus. This time the neurologist cleared up the pronunciation question: noun, nys·tag·mus \nis-ˈtag-məs\:  a rapid involuntary oscillation of the eyeballs. A curious little word with some not so…

Continue reading….