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VNS adjustment and sensitivity
Sun, 03/20/2005 - 10:56Topic: Surgery and Devices
I am looking to connect with any one who has intractable seizures , had a VNS (with success) put in and is sensitive to the settings. I had one put in last September 04. Following I lost my voice for 8 weeks and it left me not sure I wanted to keep it in. Then in Feburary I had several simple border line complex partial seizures. So last week had it turned on and it was at the lowest possible setting . This morning I had the freguency increased slighty and I can really feel it. My body is very sensitive to alot of things. Now I feel a sensation of choking when it goes off. I do not feel good about it but we have tried all my options for AEDs and this is really my last option for the cause of my seizures. Do the sensations get easier.I also get easily anxious of changes, Like things a bit stable. I look forward to hear whaT others have found to help with the adjustments. Thanks.
RE: VNS adjustment and sensitivity
Submitted by Birdbomb on Sun, 2005-03-20 - 10:56
I know that choking sensation first hand. Most of that sensation can be adjusted to. I found being over tired, stressed, or over excerting myself, made it much worse. My throat would just close to a pinhole. Then it was important to breath slowly and stay calm until the unit ramped down. This is a very common side effect. However, if it triggered an asthma attack, I'd stop the "on" time with the magnet until I got my breathing under control.
http://s4.invisionfree.com/VNS_Message_Board
Is a message board designed for VNS patients. I know there is a lot of negitive posted, not bashing, but people with side effects and no answers and no where to turn. Just keep in mind, those with a good experiance of the VNS seldom go looking for answers. We do have several members who have great results, but they just pop in occationaly.
birdbomb
I know that choking sensation first hand. Most of that sensation can be adjusted to. I found being over tired, stressed, or over excerting myself, made it much worse. My throat would just close to a pinhole. Then it was important to breath slowly and stay calm until the unit ramped down. This is a very common side effect. However, if it triggered an asthma attack, I'd stop the "on" time with the magnet until I got my breathing under control.
http://s4.invisionfree.com/VNS_Message_Board
Is a message board designed for VNS patients. I know there is a lot of negitive posted, not bashing, but people with side effects and no answers and no where to turn. Just keep in mind, those with a good experiance of the VNS seldom go looking for answers. We do have several members who have great results, but they just pop in occationaly.
birdbomb