Exploring Ayurveda For Cerebellar Ataxia And Pain Control

Western medicine is innovative, but if you search through PubMed, you find very few drug trials for degenerative cerebellar ataxia. There is no known cure for ataxia, so our best hope still lies in finding a therapy to ease the symptoms. With all the modern innovations available what if one possible answer lies in an ancient system of holistic healing? Ayurvedic medicine deserves a look. “Ayurveda” comes from the Sanskrit words Ayur (life) and Veda ( knowledge) and is the oldest (5,000-year-old) recorded system of medicine in history. It combines the concept of whole health; lifestyle, exercise, diet along with medicinal herb compounds, some which predate written history. Many traditional therapies are now being studied in a clinical setting using western methods of research, double-blind trials, and research review to prove or disprove their efficacy. The most promising trial we’ve previously highlighted is Degenerative Cerebellar Ataxia After Ayurvedic Therapy. In 2009 a joint study in India was conducted by the Department of Neurology, National Institute of Mental Health and Neurosciences, Advanced Ayurvedic Research Unit, National Institute of Mental Health, and the National Department of Neurosciences, Psychiatric and Neurological Rehabilitation.  In this study, they sought to discover if traditional Ayurvedic medicine could have a positive effect on balance issues caused by…

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Taming Chronic Headache Pain

Managing Chronic Headache Pain

Taming Chronic Headache Pain   Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over and over. A chronic headache or migraine pain sufferer will understand the long and tearful journey. Imagine the pain of a migraine. Now imagine enduring it for 76 unending days. Light, sound, and movement become the enemy. It lasted for a glorious few hours. A small twinge has returned to the base of the skull area, but Gary says it’s so light now (He describes it as a one on the pain scale) he would be ecstatic even if this is as good as it ever gets.  Living With Daily Pain Gary has lived with pain for years. His daily headache level hovered around a three. Seven days a week. He learned to work and live with a chronic headache for years. His original neurosurgeon explained the pain was caused by a pressure change as spinal fluid moved in and out of the pseudomeningocele created when he removed his tumor from the C-2/C-3 area of his spine. Fixing it would be more dangerous than living with the pain. Come back…

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Neurology Roadtrip

superficial siderosis on the brain

We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology. We may be living a Willie Nelson song, but you can’t say the VA is not thorough.We went to neurology hoping there would be some headway towards relief for Gary’s headache pain. He never sees the same resident or neurologist, so we are in constant new patient mode.   The VA does excel in keeping detailed notes from every visit, so it’s easy to tell if the resident of the day has done their homework. Gary was prescribed Divalproex five months ago for headache pain. He takes 500 mg nightly at bedtime. The medication has not been successful in stopping the pain but what it has accomplished is reducing the duration of the excruciating headaches.   Five months ago his most severe headaches would last…

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Dialing Down The Pain

Superficial Siderosis Pain

Gary always hurts.   It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. The days his pain scale reads 3 or 4, those are good days.  Most days he can look forward to hitting 5 or 6, but if a headache decides to join in at full force, then you can throw out that scale. Thankfully there are ways to ease some of the body ache and joint pain. Doctors frown upon taking acetaminophen in truckload quantities. Floating in a haze of prescription painkillers is an option, but Gary already takes 199 pills a week. ONE HUNDRED AND NINETY-NINE PILLS. It’s understandable why we try to find him relief using alternative methods. I make Arnica infused olive oil in large batches. I tried arnica first when I hurt a flexor muscle running. (Lesson- stretch, stretch, stretch). You can buy arnica off the shelf in a variety of forms, cream, balm or oil. I tried cream but found the oil-based formula worked the best. Gary was still working back then, but I was sure it could help him too.   We started by rubbing just the sorest spots on…

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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 off his neuropathy formula in the hospital while they researched medication conflicts and stayed off them. Jump ahead two months and here comes the tingling. Pretty soon it progressed to full-fledged burning. The VA pharmacy was never able to find any negative information so they let him resume his Corydalis Relaxe™ with the understanding they would be monitoring him closely. TCM herbal blends work differently than commercial pharmaceutical medications. It takes, on average, two months for your body to reach a therapeutic level. TCM blends are not a quick fix. You can’t expect instant relief, but patience pays off. The…

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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 closed and keeping his neck still but this hadn’t been working the last eight months. The severity is increasing along with the duration. This June an unusually debilitating headache took hold and wouldn’t ease up for 76 DAYS. He agreed to a trip to the Shreveport VA emergency room and even though they did the best they could it didn’t help. They ran multiple tests, warned him of the dangers of too much acetaminophen and treated him for a tension headache with a lovely shot of something they said would make him feel so much better. His pain eased…

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The Neuropathy Chronicles

Pain of neuropathy

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 Medicine (TCM). A tincture made from boiled rhizomes of the Corydalis Yanhusuo plant has been used to treat pain since the eighth century by TCM practitioners. Modern day researchers have identified twenty alkaloids, including tetrahydropalmatine (THP), which acts as a sedative and analgesic, as well as dl-Tetrahydropalmatine, Corydaline, Protopine, Tetrahydrocortisone, Bulbocapnine, Leonticine, Corybulbine-3 and Tetrahydro Columbamine. Corydalis has been used as an analgesic and antispasmodic to reduce pain. THP acts on the central nervous system to decrease nerve pain, and researchers noted that the herb was effective in reducing nerve pain in Seventy-eight percent of the patients tested. TCM practitioners…

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Quarterly Neurology Follow-Up

Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to the walking? Did we need to see a Neuroopthamoligist instead of our ophthalmologist? What alternatives, besides prescription medications, were there for the neuropathy pain, body, and joint pain? The hand and trigger finger problems had become extreme. Some days it is impossible to hold a fork or use a knife. Was this even SS related? What decision had the doctor come to in regards to searching for an active bleed? The Statin Question Our neurologist agreed pretty quickly we had a valid concern about the ten-year history of statin use. She reviewed cardiac health history. His parents had both been treated long-term for high cholesterol. Gary’s number had a history of being high at times; it was not at a level now that would suggest he was in a high-risk category. Blood pressure was stable. Plus there was the bonus of the chelation diet regimen. We avoid all red and organ meat five days a week and load up on the…

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Managing Neuropathic Pain

Hello, Switchboard I’ve Been Disconnected   One of the better explanations I found during our search for ways to manage neuropathic pain associated with Superficial Siderosis was a quote from Dr. Corey W. Hunter¹. “Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove. However, an injured nerve is like a broken telephone that rings when no one is calling (burning) and is unable to get a dial tone when you need to make a call (numbness). Even when it has nothing of importance to say to the brain, the nerves will send a message and a confused message at that. The “confused” message can be interpreted by the brain as pain or strange sensations like “pins and needles.” Over time, the spinal cord can become accustomed to getting bombarded by a nerve that never seems to turn off and makes adjustments to account for it. So, even once the nerve manages to stop firing, the spinal cord has become so used to sending that signal that it will take over and keep doing it…

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