abba12 Posted August 22, 2014 Share Posted August 22, 2014 The title says about all we know right now. He has been officially diagnosed with narcolepsy. His average falling asleep time during the test was about 55 seconds, with the longest being a minute and a half, and the shortest being only 30 seconds from lights out to full sleep. He loses his licence temporarily, and can reapply in 3-6 months when his medication is sorted I am blind, that means we are now housebound in a rural area with very little helpful family around Thankfully a bus was just recently put in, he can get to work on that (provided he is still allowed to, since he works with big machines) but it wont get us much of anywhere else. At least we have an answer now, but it's not the answer I'd been praying for. Quote Link to comment Share on other sites More sharing options...
kiwik Posted August 22, 2014 Share Posted August 22, 2014 I suspect he won't be allowed to work until his meds are sorted either. Do you have some sort of insurance? I don't know what is normal over there. I just wanted to reply and give you hugs and sympathy. I wish I could do more. Quote Link to comment Share on other sites More sharing options...
fraidycat Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
abba12 Posted August 22, 2014 Author Share Posted August 22, 2014 His treatment is made a little more complicated by the fact he has a brugada ECG, a random heart abnormality which has never been an issue at all, however, prevents the use of various medications including the one he needs. In this instance the issues from the narcolepsy are far worse than the potential issues from the brugada, especially since he has never actually had a brugada episode, and there are options for surgery if he needed it, so he will almost definitely be given the medication, but we have the added step and expense now of getting approval from a cardiologist before he begins. We are hopeful about his work. He has a number of things working in his favour there. He works computerized machines, and he is highly skilled, so even if he is not allowed to actually run the programs he may be able to continue programming them, and he is not quickly replacable. Also, it's a small company, the boss has watched him work just fine over the past 2 years and liability works a little differently here. Since he is only going to get better from this point, and has shown no obvious effect on his work up until this point, he might be fine to continue. Financially things work differently here, I'm not sure about income protection etc, but we have a lot of social services here. I'm not *too* worried about that aspect right now, there will be something. We have quite a safety net in this country. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
kiwik Posted August 22, 2014 Share Posted August 22, 2014 His treatment is made a little more complicated by the fact he has a brugada ECG, a random heart abnormality which has never been an issue at all, however, prevents the use of various medications including the one he needs. In this instance the issues from the narcolepsy are far worse than the potential issues from the brugada, especially since he has never actually had a brugada episode, and there are options for surgery if he needed it, so he will almost definitely be given the medication, but we have the added step and expense now of getting approval from a cardiologist before he begins. We are hopeful about his work. He has a number of things working in his favour there. He works computerized machines, and he is highly skilled, so even if he is not allowed to actually run the programs he may be able to continue programming them, and he is not quickly replacable. Also, it's a small company, the boss has watched him work just fine over the past 2 years and liability works a little differently here. Since he is only going to get better from this point, and has shown no obvious effect on his work up until this point, he might be fine to continue. Financially things work differently here, I'm not sure about income protection etc, but we have a lot of social services here. I'm not *too* worried about that aspect right now, there will be something. We have quite a safety net in this country. That sounds hopeful. You can concentate on helping him get better rather than worry about work and basic survival. Hope it goes well. Quote Link to comment Share on other sites More sharing options...
Jasperstone Posted August 22, 2014 Share Posted August 22, 2014 (((((hugs)))) Sounds like you have a lot to contend with already. So sorry for this! :’( Quote Link to comment Share on other sites More sharing options...
Cinder Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Twigs Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Luckymama Posted August 22, 2014 Share Posted August 22, 2014 Oh goodness. I'm glad you have an answer about your dh's health, but... :grouphug: Quote Link to comment Share on other sites More sharing options...
ashfern Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
jrn Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
umsami Posted August 22, 2014 Share Posted August 22, 2014 I'm glad you have an answer…and I hope that things move quickly in finding meds that work well for him, but doesn't affect his heart issues. I'll be keeping you and your family in my prayers. Quote Link to comment Share on other sites More sharing options...
klmama Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: I hope you and your dh are able to get everything worked out while he deals with this. I don't know if there are different types of narcolepsy or different causes, but at least for some people it isn't always a permanent condition. A relative had it for about six months, and then it went away just as mysteriously as it came on. Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: :grouphug: :grouphug: I'm glad you have an excellent safety net. Hopefully the meds will get sorted quickly. Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted August 22, 2014 Share Posted August 22, 2014 I am glad you have an answer to his problem, and hope that he can improve now that his doctors have determined the issue. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Farrar Posted August 22, 2014 Share Posted August 22, 2014 Hugs. And hooray for safety nets so you can focus more on getting through this with less fear. Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 22, 2014 Share Posted August 22, 2014 (Hugs) Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted August 22, 2014 Share Posted August 22, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammi K Posted August 22, 2014 Share Posted August 22, 2014 So sorry the news wasn't what you wanted to hear but glad you have answers so you can move forward. :grouphug: Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted August 22, 2014 Share Posted August 22, 2014 ((((((Hugs)))))) Quote Link to comment Share on other sites More sharing options...
zoobie Posted August 22, 2014 Share Posted August 22, 2014 How crazy stressful! I hope he is able to manage the symptoms and drive again soon. :grouphug: Quote Link to comment Share on other sites More sharing options...
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