As of May 2nd, I have been on a leave of absence from work. Thankfully I work with a wonderful, supportive group of girls and everyone has been tremendously understanding thus far. With my diagnoses of Migraine with Aura, Chronic Daily Headache (or Transformed Migraine) and Occipital Neuralgia from Dr. E. two years ago, I felt I just could not go on as I was. I had been starting to experience other symptoms and needed answers. After spending a week in Savannah, Ga. for my little sisters' wedding at the end of April, I felt totally wiped out. I had mentioned in my previous post all of the testing I had had done, but never disclosed the results of those tests. The MRI of my brain was clear, except for the venous angioma I have had for years. The MRI of my spine was clear, except that at the thoracic region there was an incidental finding of bilateral pleural effusion. I was then sent for a ct scan of my chest which not only validated the bilateral pleural effusions, but also showed pericardial effusion as well. (Fluid around the lungs & heart...no evidence or symptoms of infection). My balance test showed abnormal nystagmus (eye movement) and positive Romberg's test (loosing balance when eyes are closed). My sleep study was normal other than showing "alpha intrusions", which apparently happens in people who suffer from chronic pain, or take medications...both of which I do! On to my bloodwork...I have chronically low ferritin levels. (iron storage...mine ranges from 5-13, optimal is over 50), my ESR (sed rate) was elevated as well as my rheumatoid factor...(which they called positive RF). Otherwise...normal labs. Over the past 3 mths, I have been sent to a Rheumatologist, Pulmonologist, Oncologist/Hematolgist...and of course continuing care with my Neurologist. So far....basically no answers other than a new diagnosis to add to my other of..."Undifferentiated Connective Tissue Disease". I don't mean to sound so skeptical, but to me, that is like saying..."we don't know". The Rheumatologist I am now semi-regularly seeing states that it is an "evolving" CTD, such as Lupus or Rheumatoid Arthritis, however at this point, my ANA is negative. He suggested I start on Plaquenil to keep my symptoms from progressing, but until I have a definitive diagnosis, I chose to stay on NSAID's.
As far as my noggin goes, I was referred (finally) to a Pain Management Specialist. He is a godsend as far as I am concerned. He is not the drug pusher you hear about on the news or all over the internet. While yes, he prescribes medication, he also aims at trying to fix the problem, not just put a band-aid on it. Now...I am well aware that nothing "fixes" migraines, however maybe a longer lasting relief. I had a facet joint injection (medial branch block) done on both sides of my upper cervical spine under conscious sedation a couple of weeks ago. I did recieve VERY short lived relief....but that was a positive diagnostic sign. On Tues, July 20th I am having Radiofrequency Lesioning done in hopes to improve my Occipital Neuralgia. I am keeping all fingers & toes crossed!!!
I presume if I can get my head under some semblance of control, I may be able to find relief of my other symptoms of fatigue, muscle weakness (legs), aching, twitching, stiffness, pins & needles sensations, loss of concentration/coordination, unsteadiness...etc....
The list seems to go on and on and on....
Dr. B. (my pain management specialist) is convinced it is all neurological and not rheumatoid based on his physical examination. In the near future he is setting me up to have an EMG and nerve study...possibly a lumbar puncture. Guess time will tell. Until then, here is my current pain control regimen....
Naproxen 500 mg (for my effusions)- daily in am
Omeprazole 20 mg (for my tummy b/c of NSAID's)- daily in am
Fiber supplement (b/c of opiod use)- daily in am & pm
Magnesium supplement- daily in am
Opana ER 10 mg- daily in am
Norco 5/325 mg- PRN (for breakthrough pain)
Cymbalta 60 mg- daily in pm
Corgard 20 mg- daily in pm
Klonopin 1 mg- (to sleep)
Yoga- as often as I can
Meditation- learning from a pain psychologist
Ice packs- I almost always have an ice pack on my head!!!
Sunglasses or eye mask- when I can't stand the light
Ear plugs- when I can't stand the noise
Lots of water- only recently (getting smarter)