Thursday, April 12, 2012

Another Day, Another Diagnosis

In my health journey, I've seen all kinds of doctors and specialists. Today, I actually saw a kind of doctor I had never seen before: a neurologist. This was the appointment to see if my shaking and heart racing and  fatigue issues are related to a neurological condition.

The doctor was able to determine, after asking a bunch of questions and doing some simple tests, that I do indeed have a condition called Postural Orthostatic Tachycardia Syndrome (POTS). Basically, it means that my heart rate increases whenever I stand up. It is a type of dysautonomia, a dysregulation of the autonomic nervous system. POTS explains SOO many of the random symptoms I experience: my shakiness, heart racing, fatigue, extreme salt cravings, "fuzzy" thinking, dizziness, dumping syndrome, heat intolerance, fluid balance issues, dramatic improvement of symptoms when I get IV fluids...

He said that I fit the picture to a T of the typical POTS patient: someone who used to be very physically fit and strong, got sick with a chronic illness, and then developed this array of symptoms. He said that my heart has changed as my size changed - I have lost a LOT of muscle - and my nervous system has gotten messed up so that it's no longer is able to regulate my body properly. My heart has gotten smaller as I've lost muscle, and it is pumping very hard and fast when it's not necessary.

I'm already on several of the meds that they use to treat POTS (steroids), but his other recommendations were: drink 3 liters of fluid per day (!!!) and eat 3 tablespoons of salt per day (!!!!!!!!). That's a LOT of salt and water (he told me to intake 10 grams of salt daily - he said that this was 3 tablespoons. Upon Googling, I found it's more like one tablespoon - still a lot, but much more reasonable!). I'm also supposed to elevate the head of my bed, which is supposed to help retrain my heart to adapt to upright posture.

The doctor is involved with a research project that is studying the affects of exercise in POTS patients, and I may be joining this study (I also donated a tube of my blood today for research on people with POTS!). The exercise is mainly seated weight training with some seated aerobic activity (recumbent bicycle, rowing machine). The weight training is supposed to help the heart remember how to pump more efficiently while encouraging the extremities to return the blood to the heart. He told me that exercise is very beneficial for POTS patients. It's not often that I go to the doctor and am given the opportunity to do something to make myself feel better... so I jumped all over this opportunity. My heart racing symptoms have not been very prominent recently (although they were today, which was good - he got to see the symptoms I have), but I would like to keep them at bay, so I will gladly guzzle water and row on a rowing machine if it helps!

Next, I went to the Rheumatologist. She expressed concern at the amount of narcotics I'm on (I'm concerned, too!). Mainly she was concerned that I'm on so much and I'm still totally miserable and non-functional. She said that if they are helping me so that I can function, then I probably need to be on them. but if not.. I need to consider whether they are worth it or not. She wants me to try these Lidocaine patches - they provide topical pain relief, so I can stick them on the very painful area in the muscles between my shoulders. They are astronomically expensive, but it's worth a try - I truly hope that they work like a charm. It would be AMAZING to have the pain under control AND be on less drugs. She also increased the dosage on my anti-inflammatory medicine to see if that will help at all with the pain and inflammation.

All in all, even though I received a new diagnosis today, it was a good day... the diagnosis of POTS explains many things I experience, has a fairly positive prognosis, and I can hopefully do something to make myself feel better. It is honestly a relief to have a name for the constellation of symptoms I've suffered from for the past few years. And as far as the pain goes, I hope that the Lidocaine patches and anti-inflammatory meds help! I haven't been able to sleep much/well because of pain, which makes me kind of grouchy! ;)

Hannah ;)

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