What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
Join Now
|
Where do I go from here?
|
Watch this |
| View More Posts Ignore |
Have finally reached rock bottom (I hope!). Pressure built up so much at work on Wed,&I slept so badly that night(which was also my birthday!!),that I went in on Thurs afternoon, and told my boss everything.He was very sympathetic, but I've not been able to go in since,and I'm now on a stage 2 positive(!)formal absence policy (don't ask!).He says it's nothing to worry about,but I feel like I've lost control.Here's my question though:- I had my one&only appt at the sleep clinic in July,and was told,very patronisingly,that sleep paralysis won't kill me(which I've figured after over 20 years of it!!),that they don't think I'm making it up(!!!!),it is a variant of normal, and though the hallucinations are not common,they are heard of. We then briefly discussed depression because the doctor thinks I am (I did cry a bit at the beginning,as was stressed,and had been kept waiting near on an hour!!!!),and I mentioned N at the end because he hadn't, but he didn't think that was a factor as I don't fall asleep driving, or in conversation, or while reading (though I lose concentration during the last 2).I don't know what to do - do I just accept this? Am happy to if there's no chance of it,but why am I often so tired,&what do I say then in my occupational health meeting?I didn't tell my boss that I suspected N because of the above,but maybe I should.In the meantime,my family&friends are very worried about me,another thing I didn't want to happen.I know I can ask for a 2nd opinion at an approved sleep clinic,but am I just wasting everybody's time?Sorry for the length&all the exclamation marks.
Posted on 09/13/09, 04:09 pm |
| 8 Replies | Add Your Advice |
| View More Posts Ignore |
Pick up the phone and make that appt. at another sleep clinic ASAP. The only time you are wasting is the time you are letting that first doctor cloud your thinking. No mention of a sleep study at that appt. I find is a crying shame for a sleep clinic. I have been where you are, only I did have a sleep study only to be told I was complex and he didn't know how to treat me. It is wonderful that you have family and friends who are worried about you, that should equal a good support system. Of course you cried some in the appt., you are frustrated, worried, and scared. I get teary at every one of my appts., this is an emotional disease. Please stay in the group, read and learn all you can,let us know how you are doing, and when you get that second appt. Hang in there, we are always here to talk to. 
|
|
|
|
||
| View More Posts Ignore |
Thank you, this makes such a difference to me. You're right about the support of friends & family - have always hidden it as if it's not a problem, & as if either am being stupid, or they won't believe me. Back to work fri - am going to try to make changes to ease all the pressure. Will let you know what happens. Thanks again.
|
|
|
|
||
| View More Posts Ignore | ||
|
|
||
| View More Posts Ignore |
A suggestion:
Go to The sleepsite.com. There is a "brief screening questionnaire" that you can print ,complete and take with you to your new doc. You can also ask family and friends to complete one on you to further support your concerns. Also there is a section called indicators. You can print that and bring it too. As I have said before I don't fall asleep driving or in conversation or anything like that. That is an indicator in many PWN but not all. I found another lengthier questionnaire at sleepnet.com/sleeptest.html. It is ridiculous that we must fight to get diagnosed. I understand that it may feel funny to be arguing with someone who is telling you that you are healthy! Unfortunately that and not wanting to be seen as difficult kept me undiagnosed for 20 years.
|
|
|
|
||
| View More Posts Ignore |
my first doctor said it was just stress. i had to leave work on a couple of occasions because i thought i was having a stroke or something but now that i look back my brain was in sleep stage. that doctor you are seeing needs to go back to school. not everyone actually "falls asleep" as in closing our eyes and sleeping. i can be having a conversation and (what i call zoning out) my brain will go into sleep mode and i dont remember the full conversation. my kids used to get so mad at me because they thought i just wasnt paying attention to them but now they understand what was happening. N is a very emotional disease. although i am so happy and relieved to know that thats whats been wrong with me for several years now i at times get paranoid talking to people becasue im afraid it will kick in. but all my friends know and are very supportive. its hard sometimes though because there is not a lot of awareness about N and its hard to explain to people. i was blessed that my new doctor knew someone with N so when i had my sleep study she knew what to do. so please dont give up....get online search for a doctor in your area familiar with N and get a second opinion!! God bless!
|
|
|
|
||
| View More Posts Ignore |
Have a meeting with my boss on fri,& think he will refer me to Occupational Health,who may be able to refer me to another sleep clinic.If not,am seeing my gp in about a month.Still feel unsure about saying at work that I suspect narcolepsy,but I have to at least rule it out.Have been feeling crap for years,& often wondered if life feels this hard for everyone.Thanks guys - am going to try sort it out & let people help me now. x
|
|
|
|
||
| View More Posts Ignore |
Every "N" seems to have a different set of symptoms. Go on the computer, find a good sleep research ctr in your area. Keep a sleep diary, date, # of times you wake up at night., when you have blackouts,when you have muscle weakness, and what you were doing. Don't give up.For me the Med"s worked, But not without multi side effects. I can no longer take any meds, would I do it again H--- yes. jzldy
|
|
|
|
||
| View More Posts Ignore |
Have been signed off work now for 3 weeks, but GP thinks it's ok for me to go back next mon, so am hoping my boss actually believes me! I've had a lot of time to think & reflect,& the zoning out in conversation,& feeling of having a stroke, is exactly what has been happening to me. Also, my GP thinks am just stressed. It'd explain so much to me if it was N, but is also more scary,(though I don't have to tell you lot that do I?! Sorry.)
The Occupational Health nurse said I should have a set shift pattern for 2 weeks, & if that doesn't clear it up, to ask the GP for zopiclone, or a referral back to the same sleep clinic (which even if I had the strength or desire for, would be a complete waste of time). On a positive note, the fluoxetine has actually helped,& have been SP free for a week, and much more rested. (I doubt that am depressed - even as I rant, a joke has popped back into my head about the grim reaper & a hedge, & made me smile....).
|
|
|
|
||
| Add Your Advice |
