Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Hi, Everyone - It's been a long time since I posted. So much going on, and where I need help, it isn't here in Pittsburgh. My son is in very bad shape and can't get help. He's on disability - Gateway Health Assurance, with Medicare and Medicaid. But this area is a hard place. He has Chiari symptoms, and also symptoms of narcolepsy. Has that happened to anyone else? He is in bad shape , but when he's gone to ER's, he's gotten no help of course. But he just called me and he has just slept for 20 hours, and feels like he could sleep more, but he's scared because he doesn't know if it's sleep or being unconscience. He rarely gets scared by the horrible things happening to him. He's 33 years old. He lost the script for bloodwork for the narcolepsy, and the receptionist is rude and won't help, and he can't get past her and won't let me try. Before my decompression that was a disaster in so many ways, but did save my life, for which I do thank God, I would have terrifying times when I felt like if I fell alseep, that I would go into a coma. At one point I had to stay awake for 4 days. When I finally got surgery, the surgeon told me that my instincts were right. But I'm so worried about my son. Has anyone had narcolepsy with Chiari? Many thanks for any feedback. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Sounds a lot like mast cell disease. Many of us with it report times of " semi-consciousness " where it looks like sleep but we can see and stuff around us. Look into " mast cell activation disease " for more information From my HTC Sensation 4G on T-Mobile. The first nationwide 4G network ----- Reply message ----- To: " CCI - yahoogroups " <chiariconnectioninternational > Subject: narcolepsy Date: Sun, May 20, 2012 9:18 pm Hi, Everyone - It's been a long time since I posted. So much going on, and where I need help, it isn't here in Pittsburgh. My son is in very bad shape and can't get help. He's on disability - Gateway Health Assurance, with Medicare and Medicaid. But this area is a hard place. He has Chiari symptoms, and also symptoms of narcolepsy. Has that happened to anyone else? He is in bad shape , but when he's gone to ER's, he's gotten no help of course. But he just called me and he has just slept for 20 hours, and feels like he could sleep more, but he's scared because he doesn't know if it's sleep or being unconscience. He rarely gets scared by the horrible things happening to him. He's 33 years old. He lost the script for bloodwork for the narcolepsy, and the receptionist is rude and won't help, and he can't get past her and won't let me try. Before my decompression that was a disaster in so many ways, but did save my life, for which I do thank God, I would have terrifying times when I felt like if I fell alseep, that I would go into a coma. At one point I had to stay awake for 4 days. When I finally got surgery, the surgeon told me that my instincts were right. But I'm so worried about my son. Has anyone had narcolepsy with Chiari? Many thanks for any feedback. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Hi Debbie I don't know that what I experienced/am experiencing is as severe as you describe but before decompression and now as symptoms are worsening and coming back I find it almost impossible to stay awake at times or if I do take a nap with pass out for several hours and then have to force myself to wake up. For me, I have noticed that when these things are bad I also have a lot of pressure and fluid in my head. Don't know how it relates or if it's just coincidence. But why I wanted to reply is for 2 reasons. For the Rx for the blood work-has he tried to just go to the lab and have them call the doctor? If he explains the situation they may be a little more sympathetic. I know there's been more than one occassion where the dr was suppose to fax over the Rx but when I got there they hadn't received it and the lab had to call for it. Some of the doctors will fax it and give me a copy also because the lab has a tendancy to misplace it. Secondly- there is a new medication that is approved for narcolepsy and people who do shift work to regulate their sleep patterns. It's called Nuvigil. My old pain doctor (whom I've since fired for so many reasons) had me try it. Thinking it would help with my fatigue and sleep issues. However she never really listened to me when I told her that my sleep disturbances and even some of my fatigue was from actual pain. So for me, this was not right. After only a couple doses I was not able to sleep at all and ended up in so much more pain because of it. But I also have a lot of wierd and severe reactions to meds also. This is definitely something he could at least ask his doctor about. And if he has a good pharmacist have them ask about the free trial. I think it was a months worth for free. My insurance denied it because I didn't have either of the conditions it was approved for but with the free trial I was able to find out whether or not it would help. It is a very expensive med but the manufacturer does have different assistance programs to help with the cost. Just something to look in to. Debbie R. Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 I am not discounting the mast cell disease. Much needs to be learned about that. However, in the longer held chiari beliefs..... this sounds like perhaps a sleep apnea issue. This is seen in many people with CM Just found this one site with this quote: " a.. Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD. " http://www.sleepnet.com/forum4/messages/789.html there is quite a bit re. apnea/chiari on line.... Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa narcolepsy > Date: Sun, May 20, 2012 9:18 pm > > > > > > > Hi, Everyone - It's been a long time since I posted. So much going on, > and where I need help, it isn't here in Pittsburgh. My son is in very bad > shape and can't get help. He's on disability - Gateway Health Assurance, > with Medicare and Medicaid. But this area is a hard place. He has Chiari > symptoms, and also symptoms of narcolepsy. Has that happened to anyone > else? He is in bad shape , but when he's gone to ER's, he's gotten no help > of course. But he just called me and he has just slept for 20 hours, and > feels like he could sleep more, but he's scared because he doesn't know if > it's sleep or being unconscience. He rarely gets scared by the horrible > things happening to him. He's 33 years old. He lost the script for > bloodwork for the narcolepsy, and the receptionist is rude and won't help, > and he can't get past her and won't let me try. Before my decompression > that was a disaster in so many ways, but did save my life, for which I do > thank God, I would have terrifying times when I felt like if I fell > alseep, that I would go into a coma. At one point I had to stay awake for > 4 days. When I finally got surgery, the surgeon told me that my instincts > were right. But I'm so worried about my son. Has anyone had narcolepsy > with Chiari? Many thanks for any feedback. Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 This is one of those things that will not show on any test normally run. A sleep study will show one way or the other. That's probably the first way I'd go. Then, if something shows, great. If not, then head the MCAD way. Trust me, MCAD is VERY prominent in ACM patients. Subject: Re: narcolepsy To: Cc: " Sally R " Date: Monday, May 21, 2012, 10:36 AM  I am not discounting the mast cell disease. Much needs to be learned about that. However, in the longer held chiari beliefs..... this sounds like perhaps a sleep apnea issue. This is seen in many people with CM Just found this one site with this quote: " a.. Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD. " http://www.sleepnet.com/forum4/messages/789.html there is quite a bit re. apnea/chiari on line.... Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa narcolepsy > Date: Sun, May 20, 2012 9:18 pm > > > > > > > Hi, Everyone - It's been a long time since I posted. So much going on, > and where I need help, it isn't here in Pittsburgh. My son is in very bad > shape and can't get help. He's on disability - Gateway Health Assurance, > with Medicare and Medicaid. But this area is a hard place. He has Chiari > symptoms, and also symptoms of narcolepsy. Has that happened to anyone > else? He is in bad shape , but when he's gone to ER's, he's gotten no help > of course. But he just called me and he has just slept for 20 hours, and > feels like he could sleep more, but he's scared because he doesn't know if > it's sleep or being unconscience. He rarely gets scared by the horrible > things happening to him. He's 33 years old. He lost the script for > bloodwork for the narcolepsy, and the receptionist is rude and won't help, > and he can't get past her and won't let me try. Before my decompression > that was a disaster in so many ways, but did save my life, for which I do > thank God, I would have terrifying times when I felt like if I fell > alseep, that I would go into a coma. At one point I had to stay awake for > 4 days. When I finally got surgery, the surgeon told me that my instincts > were right. But I'm so worried about my son. Has anyone had narcolepsy > with Chiari? Many thanks for any feedback. Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Hi Debbie, I haven't been diagnosed with narcolepsy, but I fell asleep in church, sitting at the computer... I just had a 3 day EEG and narcolepsy wasn't part of the diagnosis. Does he take any medications? I was told meds can interact causing problems. From years on the lists I don't remember I don't remember anyone bringing it up, but you can search the archives. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 It could also be seizure disorder. I would ask for an EEG from a neurologist. Sharon Lang > I am not discounting the mast cell disease. Much needs to be learned about > that. > However, in the longer held chiari beliefs..... this sounds like perhaps a > sleep apnea issue. This is seen in many people with CM > > Just found this one site with this quote: > " > a.. Sleep Deprivation due to Sleep Apnea and insufficient sleep are common > and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In > infants and children sleep problems commonly present themselves as ADD or > ADHD. " > > http://www.sleepnet.com/forum4/messages/789.html > > there is quite a bit re. apnea/chiari on line.... > Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling > pretty good on NO meds in Bethlehem,Pa > > narcolepsy > > Date: Sun, May 20, 2012 9:18 pm > > > > > > > > > > > > > > Hi, Everyone - It's been a long time since I posted. So much going on, > > and where I need help, it isn't here in Pittsburgh. My son is in very bad > > shape and can't get help. He's on disability - Gateway Health Assurance, > > with Medicare and Medicaid. But this area is a hard place. He has Chiari > > symptoms, and also symptoms of narcolepsy. Has that happened to anyone > > else? He is in bad shape , but when he's gone to ER's, he's gotten no help > > of course. But he just called me and he has just slept for 20 hours, and > > feels like he could sleep more, but he's scared because he doesn't know if > > it's sleep or being unconscience. He rarely gets scared by the horrible > > things happening to him. He's 33 years old. He lost the script for > > bloodwork for the narcolepsy, and the receptionist is rude and won't help, > > and he can't get past her and won't let me try. Before my decompression > > that was a disaster in so many ways, but did save my life, for which I do > > thank God, I would have terrifying times when I felt like if I fell > > alseep, that I would go into a coma. At one point I had to stay awake for > > 4 days. When I finally got surgery, the surgeon told me that my instincts > > were right. But I'm so worried about my son. Has anyone had narcolepsy > > with Chiari? Many thanks for any feedback. Debbie > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Kath and others-- You might try Alpha Lipoic Acid (ALA) supplements. IF it is MCAD, it will stop it. It normally takes a 1500-1800mg/day dose (work up from 600mg/day). It's an easy, non-medication route to try. Kathleen, your story sounds VERY much like what I have. It's easy and fairly cheap. Subject: Re: narcolepsy To: Date: Monday, May 21, 2012, 12:32 PM  Hi Debbie, I haven't been diagnosed with narcolepsy, but I fell asleep in church, sitting at the computer... I just had a 3 day EEG and narcolepsy wasn't part of the diagnosis. Does he take any medications? I was told meds can interact causing problems. From years on the lists I don't remember I don't remember anyone bringing it up, but you can search the archives. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
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