Often times when reading posts, there are members asking if anyone has this or that symptom. Though diagnosed w/ sarcoidosis since 2000, I have only recently been given a name that describes some of the weirder, harder to explain symptoms I have experienced. Some of these were easily dismissed because they are hard to detect or explain. The name?
Dysautonomia. This refers to the abnormal functioning of one's autonomic nervous system. While there are different syndromes, some are primary, some are secondary to another disease process. Mine is secondary, and caused by the sarcoidosis.
Symptoms which can point to Dysautonomia are many and can include the following. Irregular heart rate or rythms, Tachycardia, esophageal dysmotility(difficulty swallowing), urinary dysfunction(trouble initiating, abnormal voiding patterns/dysfunction),GI dysfunction(filling defects/gastroparesis, nausea, vomiting), panic attacks, blood pressure changes( likely upon standing), certain headaches, abnormal sweating, and sexual dysfunction. These are some if not all of the symptoms related to dysautonomia. If you have a collection of these symptoms it is possible that you have dysautonomia. Some of these problems can be attributed to other causes but are best left to a doctor to ascertain.
I currently take several medications for this syndrome:
1-Reglan (metoclopromide)-esophageal dysmotility
2-Toprol XR (metoprolol ER)tachycardia
4-Ativan (lorazepam)-anxiety/panic attacks
5-Lyrica (pregabalin)-nerve pain
6-Elavil(amitriptyline)-nerve pain/sleep aid
7-Soma(carisoprodol)-headaches along occipital nerve blocks and Trigger Point Injections, aspirin(last resort)
The first sign of problems came around 1997 when I noticed a change in urinary function. Trouble initiating, frequency of urination, and abnormal flow pattern. Nausea and trouble swallowing have been problems for almost as long. Tachycardia showed up around 3 yrs ago. Panic attacks around a year later. Then finally headaches became a HUGE issue within the last year.
As you can see, it didnt all just show up one day. This led to a long list of doctors who dimissed and downplayed my symptoms. I finally found a great neurologist. After I explained everything in great detail she said, to my great relief, That isnt so hard to believe, I've seen it with several patients with sarcoidosis. This didnt mean I was cured or anything but it felt damn good to find a doctor who fully believed what I was going through and was willing to help. Hell, I didnt believe half of it myself and I've lived through it! Hard to believe but I was even dropped like a bad habit from one Sarcoidosis Clinic because I was a difficult case. I hope someone was able to gain something from this post. Best wishes my sarcoid friends.