Greetings from Spokane, WA. In Dec. 2016 a Neurologist diagnosed me w/ Chiari Malformation Type 1 (5 mm) following MRI. I had been suffering from chronic episodes of balance issues, vertigo, nausea, vomiting, headaches, widespread body pain & neuropathy. I was also told I have a migraine brain at that time, which can also present w/ similar symptoms. In Jan. 2016 an EN&T specialist diagnosed me with both Benign Positional Paroxysmal Vertigo (BPPV) & Meniere’s Disease, which can also present w/ similar symptoms. Back in 2013 I was diagnosed w/ Gastoparesis (stomach paralysis), which I now believe is no longer “Idiopathic,” but due to the Chiari damaging my vagus nerve. So far my treatment has been to try & manage my symptoms & depression (Lyrica & Lexapro daily, Hydroxizine & Zofran as needed & Vit D & Magnesium supplements). For the Meniere’s it was recommended I try a low sodium diet, which has helped (especially w/ the fullness & hearing loss/tinnitus-ringing in my ears). I was also referred to PT for the BPPV to manage balance issues. For the widespread body pain a Rheumatologist recommended I start an elimination diet (gluten free, dairy free, etc.), which has also helped. In Feb. 2016 I had a CTA which also revealed I have Torturous Internal Carotid Arteries (likely damage from Pre-Eclampsia), which probably accounts for the Pulsatile Tinnitus (thump-thump-thumping), maybe even some of the internal “vibrations” I experience. Just a few days ago I had a sleep study because I suffer from insomnia (I do have some apnea, but apparently we all do to some degree & restless legs). I am making changes to feel better & try to stay active, but it’s a real struggle trying to control stress.
Sounds like you are trying lots of different things to manage your symptoms. It is quite the list! I hope that you continue to learn about news things and are able to apply them successfully. It seems that supposedly unconventional approaches are difficult to come across. I am glad that you have had helpful medical people. Keep up the Chiari search!
Hi Lisa, My husband was a Marine and we spent 8 years living on military bases.p from 1981 to 1989. He was in the National Guard Reserves and served in Iraq in 04-05. He is involved with the American Legion and VFW. Thanks for your service. I am 54 and was diagnosed in Dec too with a 5 mm herniation. A bulge in the spinal cord and CSS with deformity to the spinal cord. Blocked CSF. I Had preeclampsia too, toxemia and Hemplegic migraines with pregnancies, got floaters during this time. I have the whooshing sounds in ears, tinnitus. Gurgling sounds in my head, feel really hot at times, then get head pain. Have Basilar, Hemplegic, and Classic Migraines. In 2005 diagnosed with fibromyalgia. Sleep issues, fatigue, dizziness (for 3 weeks once), vomiting, gagging, sensitive to smells, jerky eye movements. Severe neck pain, shoulders and base of skull pain. I’ve been wearing a collar for since Jan 19 and it has helped a lot, along with doing much less! I wake up at least 3 times a night. I think I have sleep apnea too. I feel like it is my biggest problem right NOW, it always changes, is waking up constantly, I snore, feeling like I can’t breathe, gasping for air, having chest tightnes/pain, being hot then cold, cover up and take the covers off.
Thanks, sounds like we have common symptoms w/ just a 5 mm herniation. I had several Dr’s opine that I had Fibromyalgia as well, hence an eventual referral to a Rheumatologist. However after the MRI revealed the Chiari, the Neurologist said that diagnosis is only for those who don’t have a clear cause for pain - she said we know the cause is Chiari. I originally started having Neuropathy a few years ago, starting w/ my left shoulder. It is now like wearing a cloak of numbness on my left side, from neck to foot. Neuro put me on 290 mcg of Lyrica in Jan., which has helped some. Only it seems to be worsening, I now experience numbness in my right shoulder blade & my face (almost like I’ve been slapped). My sleep is so disrupted - it takes me a very long time just to fall asleep, then I wake easily (sensitive to light, sound, smells) & I have a lot of movement (sometimes due to pain & need to change positions, sometimes just restless legs). Waiting for a follow-up after the study earlier this week to see what/if anything is recommended to improve sleep (I’m usually in bed for a minimum of 10 hrs, but usually get 5 hrs of sleep & am restless at least 20X - according to my Fitbit).