stevenpaulo
Well-known member
KRISTY.
It wouldn’t take you long to pick my brain. With regards to how I was diagnosed with NMT as opposed to BFS. The two are differentiated by EMG findings. A diagnosis of BFS would be the result of finding only single discharges (fasciculation’s) on EMG, whereas NMT shows as single, double and triplet discharges. Apart from that the two share very similar features. It’s strange but at my first appointment and obviously before I’d had any tests, my neuro had no hesitation in saying “I think you have Neuromyotonia” how he knew I don’t know.
I have used Diazepam at 2/4mg along with all the anticonvulsants that I have mentioned and also with one that I haven’t, Sodium Valporate. I would take it with a codeine-based painkiller maybe 3 times a week just to get a break from my symptoms, which are mainly discomfort/pain as opposed to twitching. Since the Lamotrigine/Gabapentin combination kicked in, which wasn’t until I hit the 900mg of the Gabapentin I have only taken the Diazepam/painkiller very rarely.
Other meds I’ve tried on their own are, Clonazepam, this worked very well at first but after two weeks all the symptoms returned and I had to increase the dose. This had the desired effect but was short lived so I stopped taking it.
Phenytoin. (Dilantin) This did nothing but give me freezing cold feet along with permanent cramp in my toes, so I soon dropped that one. Amytriptiline is another one I’ve tried but this had no effect. Carbamazepine (Tegretol slow release) I mentioned that I had taken it with Lamotrigine and I’ve also taken it on its own but it didn’t help. Trileptal. I’m not sure what this is? .
The only side effects I’ve experienced is a permanent feeling of tiredness but then again, this might not necessarily be entirely due to the medication. The way I see it, a lot of this tiredness/fatigue probably stems from the fact that some of our muscles/muscle fibre, is simply not being allowed to relax due to all the constant twitching. Its stands to reason that sooner or later, your brain is going to start to tell you to rest and it does that by making you feel tired. It’s quite well known that this muscular activity continues during sleep and to my mind that’s why you can end up feeling permanently fatigued. Anyway I’ve gone a bit off track here but I hope I’ve helped with the medication questions.
If I can be of help with any more questions please let me know and I’ll try to answer them,
Take care. Steve.
It wouldn’t take you long to pick my brain. With regards to how I was diagnosed with NMT as opposed to BFS. The two are differentiated by EMG findings. A diagnosis of BFS would be the result of finding only single discharges (fasciculation’s) on EMG, whereas NMT shows as single, double and triplet discharges. Apart from that the two share very similar features. It’s strange but at my first appointment and obviously before I’d had any tests, my neuro had no hesitation in saying “I think you have Neuromyotonia” how he knew I don’t know.
I have used Diazepam at 2/4mg along with all the anticonvulsants that I have mentioned and also with one that I haven’t, Sodium Valporate. I would take it with a codeine-based painkiller maybe 3 times a week just to get a break from my symptoms, which are mainly discomfort/pain as opposed to twitching. Since the Lamotrigine/Gabapentin combination kicked in, which wasn’t until I hit the 900mg of the Gabapentin I have only taken the Diazepam/painkiller very rarely.
Other meds I’ve tried on their own are, Clonazepam, this worked very well at first but after two weeks all the symptoms returned and I had to increase the dose. This had the desired effect but was short lived so I stopped taking it.
Phenytoin. (Dilantin) This did nothing but give me freezing cold feet along with permanent cramp in my toes, so I soon dropped that one. Amytriptiline is another one I’ve tried but this had no effect. Carbamazepine (Tegretol slow release) I mentioned that I had taken it with Lamotrigine and I’ve also taken it on its own but it didn’t help. Trileptal. I’m not sure what this is? .
The only side effects I’ve experienced is a permanent feeling of tiredness but then again, this might not necessarily be entirely due to the medication. The way I see it, a lot of this tiredness/fatigue probably stems from the fact that some of our muscles/muscle fibre, is simply not being allowed to relax due to all the constant twitching. Its stands to reason that sooner or later, your brain is going to start to tell you to rest and it does that by making you feel tired. It’s quite well known that this muscular activity continues during sleep and to my mind that’s why you can end up feeling permanently fatigued. Anyway I’ve gone a bit off track here but I hope I’ve helped with the medication questions.
If I can be of help with any more questions please let me know and I’ll try to answer them,
Take care. Steve.