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Living with Parkinson's Disease - Meet others & come say hi
Parkinson's Disease | Last Active: 15 hours ago | Replies (912)Comment receiving replies
He has minimal motor symptoms - for which we are very thankful - most of his symptoms are autonomic - nausea, anxiety (High Anxiety), and total loss of his body thermostat so he is sweating profusely one minute and then teeth chattering cold the next. If sunlight hits his face, he cheeks and temp feel as if they are burning. He has to change clothes multiple times a day. We believe the nausea is mostly brought on by the medication (Crexont) but he has lost 30 pounds in the last 8 months. He does have minor right hand and leg tremor and the Crexont is helping calm that a little - but not enough to work on his computer any longer. He's distressed and depressed. He tries to exercise each day but the body thermostat issues makes long exercise difficult. Do any of you have ways to address the autonomic issues? He eats a saltine cracker every 30 minutes to help calm the nausea and he drinks tons of water. He takes Xanax when his anxiety reaches high peaks. Nothing has helped the hot/cold symptoms. Would love to learn a technique to help him. if you know of anything. Thank you friends.
Replies to "He has minimal motor symptoms - for which we are very thankful - most of his..."
@spatase that sounds really hard, and also familiar I have developed pretty disabling autonomic disfunction in recent years, that impacts mood, body temperature, heart rate and digestion. I don't know yet if it's going to help, but I just ordered a vagus nerve stimulation device and am hoping it will help. A healthy diet has definitely helped (no sugar, minimal processed foods.) Sun and heat are huge problems, so I try to get some walking in early or late; also I wear hats and light clothing that fully covers. I hope he finds some relief.
@spatase I had a bad experience with Crexont; it's side effects were too much for me to bear. It does make your "on" sessions longer, but that wasn't always a good thing when you are dealing with side effects (mostly anxiety). Have you previously taken Simenet?
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@spatase
My only thought is to seek a second opinion. Is he currently seeing a movement disorder specialist? This is a neurologist who is specially trained in movement disorders, such as Parkinson's disease.
What type of testing was done to determine the diagnosis of PD? Given the severity of his symptoms, have any other PD drugs been tried?