Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 , Hope you feel better and better. You deserve to. I hope you get out of your slump soon and find the right combination of what will work to help you feel better. Thoughts and prayers, xoxo From: Windsinging melt Sent: Friday, March 30, 2012 11:54 AM To: stillsdisease Subject: OT: Sleeping so much From: mailto:windsinging%40hotmail.com To: mailto:stillsdisease%40yahoogroups.com Subject: OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. I have a sleeping disorder and am taking medication since this last October but it seems it is not as effective these days. It has just been adjusted so maybe that will help? When I get home or am at home, I fall asleep as early as the afternoon and sleep all the way through unless I have an appointment until even 11:00 am the next morning. I've been trying to get medication to work for months now and as I said it seems to be getting worse. I just wanted to let you all know that I'm not purposefully ignoring phone calls, emails or anyone. Much love and support to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 , Hope you feel better and better. You deserve to. I hope you get out of your slump soon and find the right combination of what will work to help you feel better. Thoughts and prayers, xoxo From: Windsinging melt Sent: Friday, March 30, 2012 11:54 AM To: stillsdisease Subject: OT: Sleeping so much From: mailto:windsinging%40hotmail.com To: mailto:stillsdisease%40yahoogroups.com Subject: OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. I have a sleeping disorder and am taking medication since this last October but it seems it is not as effective these days. It has just been adjusted so maybe that will help? When I get home or am at home, I fall asleep as early as the afternoon and sleep all the way through unless I have an appointment until even 11:00 am the next morning. I've been trying to get medication to work for months now and as I said it seems to be getting worse. I just wanted to let you all know that I'm not purposefully ignoring phone calls, emails or anyone. Much love and support to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Oh, . I'm sorry you can't stay awake. That makes my afternoon fatigue seem like NOTHING! I really hope you find some relief soon. Good luck. April Sent from my Verizon Wireless Phone OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. I have a sleeping disorder and am taking medication since this last October but it seems it is not as effective these days. It has just been adjusted so maybe that will help? When I get home or am at home, I fall asleep as early as the afternoon and sleep all the way through unless I have an appointment until even 11:00 am the next morning. I've been trying to get medication to work for months now and as I said it seems to be getting worse. I just wanted to let you all know that I'm not purposefully ignoring phone calls, emails or anyone. Much love and support to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Oh, . I'm sorry you can't stay awake. That makes my afternoon fatigue seem like NOTHING! I really hope you find some relief soon. Good luck. April Sent from my Verizon Wireless Phone OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. I have a sleeping disorder and am taking medication since this last October but it seems it is not as effective these days. It has just been adjusted so maybe that will help? When I get home or am at home, I fall asleep as early as the afternoon and sleep all the way through unless I have an appointment until even 11:00 am the next morning. I've been trying to get medication to work for months now and as I said it seems to be getting worse. I just wanted to let you all know that I'm not purposefully ignoring phone calls, emails or anyone. Much love and support to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Oh, . I'm sorry you can't stay awake. That makes my afternoon fatigue seem like NOTHING! I really hope you find some relief soon. Good luck. April Sent from my Verizon Wireless Phone OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. I have a sleeping disorder and am taking medication since this last October but it seems it is not as effective these days. It has just been adjusted so maybe that will help? When I get home or am at home, I fall asleep as early as the afternoon and sleep all the way through unless I have an appointment until even 11:00 am the next morning. I've been trying to get medication to work for months now and as I said it seems to be getting worse. I just wanted to let you all know that I'm not purposefully ignoring phone calls, emails or anyone. Much love and support to all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 , have you ever had asleep study? Hadleigh was diagnosed with Sleep Apnea. Without doc appts, etc., she would sleep all day. Seems she was not able to get enough quality sleep. She will be getting her tonsils out along with other issues soon...Finally cleared with Cardiology! Hope you are able to get some help....Take good care!! OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 , have you ever had asleep study? Hadleigh was diagnosed with Sleep Apnea. Without doc appts, etc., she would sleep all day. Seems she was not able to get enough quality sleep. She will be getting her tonsils out along with other issues soon...Finally cleared with Cardiology! Hope you are able to get some help....Take good care!! OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 , have you ever had asleep study? Hadleigh was diagnosed with Sleep Apnea. Without doc appts, etc., she would sleep all day. Seems she was not able to get enough quality sleep. She will be getting her tonsils out along with other issues soon...Finally cleared with Cardiology! Hope you are able to get some help....Take good care!! OT: Sleeping so much Date: Fri, 30 Mar 2012 11:29:41 -0700 Hi all, I wanted to touch base and let you know that I have been reading the mails but unable to stay awake past 4:30 in the afternoon to reply and or visit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Thank you all for your replies and wishes! , I am so happy for Hadleigh! I hope all goes very well for her with the procedure. I had a sleep study a few years back and am apnic. I wasn't a candidate for surgeries because really no tonsils, and/or other options the doctors said. The medication I have been on since October was working until about a month ago. I spoke with my pain doctor yesterday and we feel it MAY be that when I started the Nurontin for daily headaches, it could have caused the Ritlin to become less effective. His advise is to go back to just one or none of the Nurontin since my headaches have improved and see if the need for sleep lessens again. I do know there are other medications to help with Narcolepsy as well so onward from here I guess. I just really appreciate all of your understanding and support. It would be nice if there were a life with a middle road for us ;0) Smiles and hugs, To: Stillsdisease From: cbvvw1@... Date: Fri, 30 Mar 2012 22:45:13 -0400 Subject: Re: OT: Sleeping so much , have you ever had asleep study? Hadleigh was diagnosed with Sleep Apnea. Without doc appts, etc., she would sleep all day. Seems she was not able to get enough quality sleep. She will be getting her tonsils out along with other issues soon...Finally cleared with Cardiology! Hope you are able to get some help....Take good care!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Hi, Two medications that help with narcolepsy and have recently been approved for other uses are Nuvigil and Provigil. I take Nuvigil for daytime sleepiness. I have ’s disease and fibro. I am on this group to help support daughter with Still’s. But my illnesses are so similar in symptoms, it makes it all seem like it crosses over. The Nuvigil has a pharmacy coupon which allows a month free, and then refills at a reduced rate. I will post the link in case anyone is interested. I have taken Adderall in the past. With Nuvigil, it is long acting and need just take it once in the am. My dose is 250mg per day. They make as small as 150 mg tablets. I would usually take two, but to be eligible for the discount, I cut my dose by 50mg. http://www.nuvigil.com/try-nuvigil-for-free Hope you get to feeling much better soon . I also had sleep studies and have sleep apnea. I use the CPAP machine, but not too sleep in, it helps regulate my breathing during the day when the allergies are bad. The air is filtered and it helps with my anxiety to keep my breathing steady while awake. I just can’t get used to sleeping with it on and have at times, but figure some use is better than none from it. Things could change. Happy feelings of love and light with healing all around, xoxo From: Windsinging melt Sent: Saturday, March 31, 2012 3:25 PM To: stillsdisease Subject: RE: OT: Sleeping so much Thank you all for your replies and wishes! , I am so happy for Hadleigh! I hope all goes very well for her with the procedure. I had a sleep study a few years back and am apnic. I wasn't a candidate for surgeries because really no tonsils, and/or other options the doctors said. The medication I have been on since October was working until about a month ago. I spoke with my pain doctor yesterday and we feel it MAY be that when I started the Nurontin for daily headaches, it could have caused the Ritlin to become less effective. His advise is to go back to just one or none of the Nurontin since my headaches have improved and see if the need for sleep lessens again. I do know there are other medications to help with Narcolepsy as well so onward from here I guess. I just really appreciate all of your understanding and support. It would be nice if there were a life with a middle road for us ;0) Smiles and hugs, To: Stillsdisease From: cbvvw1@... Date: Fri, 30 Mar 2012 22:45:13 -0400 Subject: Re: OT: Sleeping so much , have you ever had asleep study? Hadleigh was diagnosed with Sleep Apnea. Without doc appts, etc., she would sleep all day. Seems she was not able to get enough quality sleep. She will be getting her tonsils out along with other issues soon...Finally cleared with Cardiology! Hope you are able to get some help....Take good care!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 I agree, ....Do you have BiPAP or CPAP? Hadz has structural issues...tiny nose...and with all the prednisone and forced air (full life support), the hole in her septum is almost half an inch. They are going to place a 'button' into the hole so that she can have a 'normal' breathing rhythm...and they will do a bit more to clear the way. I didn't know that Neurontin was good for headaches. Hadleigh has used it as a part of her pain regimen for a few years now....I am the one with the headaches! There is always so much to handle with Stills. Once one thing settles another few remind us they are still there!! Take good care, RE: OT: Sleeping so much Thank you all for your replies and wishes! , I am so happy for Hadleigh! I hope all goes very well for her with the procedure. I had a sleep study a few years back and am apnic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 I agree, ....Do you have BiPAP or CPAP? Hadz has structural issues...tiny nose...and with all the prednisone and forced air (full life support), the hole in her septum is almost half an inch. They are going to place a 'button' into the hole so that she can have a 'normal' breathing rhythm...and they will do a bit more to clear the way. I didn't know that Neurontin was good for headaches. Hadleigh has used it as a part of her pain regimen for a few years now....I am the one with the headaches! There is always so much to handle with Stills. Once one thing settles another few remind us they are still there!! Take good care, RE: OT: Sleeping so much Thank you all for your replies and wishes! , I am so happy for Hadleigh! I hope all goes very well for her with the procedure. I had a sleep study a few years back and am apnic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 I agree, ....Do you have BiPAP or CPAP? Hadz has structural issues...tiny nose...and with all the prednisone and forced air (full life support), the hole in her septum is almost half an inch. They are going to place a 'button' into the hole so that she can have a 'normal' breathing rhythm...and they will do a bit more to clear the way. I didn't know that Neurontin was good for headaches. Hadleigh has used it as a part of her pain regimen for a few years now....I am the one with the headaches! There is always so much to handle with Stills. Once one thing settles another few remind us they are still there!! Take good care, RE: OT: Sleeping so much Thank you all for your replies and wishes! , I am so happy for Hadleigh! I hope all goes very well for her with the procedure. I had a sleep study a few years back and am apnic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Hi all, I did take Provigil some years back and then some Nuvigil samples this winter that worked well but of course the insurance company may now need to be applied for one of those again as a special request. , I use a C-Pap but because I am claustrophobic they gave me just the pillows that fit under my nose. Much less invasive than the facial masks that I have seen others use. I also have very narrow passages in my nose and one time the ENT tried to pop them open. That was horrible. Never again. My pain management doctor I saw on Friday thinks as I am suspecting that the Neuron tin dosage for the headaches may be interfering with the Narcolepsy medication so had said to reduce that and or discontinue it. when I took it some years back it took away my daily persistent headaches at a certain dosage. It helped me so much and I no longer had them for years until just a month ago. I've stopped having them again but cannot live with the Narcolepsy. So, thank you all for your support. I'm sure it will all work out given the options we have available. You are all so kind.Much love, Quote Link to comment Share on other sites More sharing options...
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