Guest guest Posted October 18, 2002 Report Share Posted October 18, 2002 , I have to echo 's comments about the morning headaches. I had them for years and never knew why. When I went to the specialist to discuss a possible sleep apnea problem, that was one of the questions on the questionaire. Since using CPAP for over three years now, I don't remember waking up with a headache. I also wouldn't dream of going to bed at night without my CPAP as it has made a world of difference as far as my sleeping goes. I do not have oxygen at night...at least not yet. In the course of my recent TMJ discovery, I have purchased a special pillow which you add water to. I found it at the TMJ doctor's office. It has been an added benefit to me as I am finding that I enjoy a better night's sleep with it. Here is an internet link to the pillow: certainly worth questioning. Of course, this is only one possibility. Swallowing problems are a common complaint with mito as it takes muscles to swallow. Have you had a swallow study done? Have you experienced any unusual choking on food? I'm so sorry that your symptoms are worsening. This is a nasty disease and is relentless in it's control over our lives, no matter how we fight back. Reading the other message about your increased hearing loss is so familiar. You and I have had many discussions about this and I sincerely understand how difficult it is to live with severe hearing issues. Hopefully you will soon find some comfort from these new symptoms. You are such a blessing to us all as you have so often shared interesting and informative messages to the group. I always find your messages are uplifting and it has been a great pleasure to me to have your association , even though it has never been more than via the internet. Hugs - I hope you find answers to your questions soon. Alice --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (). Version: 6.0.389 / Virus Database: 220 - Release Date: 09/16/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 , I am on O2 therapy and one of the initial tip offs was am headaches. I had a sleep study (actually multiple) which confirmed desaturations at night. You may want to ask your doc about a nighttime oximetry study....a lot easier than a full blown sleep study. I'm due for a repeat one of those in the near future. Kristie Message: 7 Date: Fri, 18 Oct 2002 11:11:51 -0400 (EDT) From: BDS31@... Subject: Morning headaches Dear Friends, More and more, I am waking up during the early hours of the morning with bad headaches and nausea. At the same time, my ability to swallow, especially at night, is worsening, and my voice is getting weaker. Those of you with oxygen at night, were am headaches one of the reasons you ended up with this therapy? Thanks for your help. PS: I do suffer from migraines. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.401 / Virus Database: 226 - Release Date: 10/9/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Laurie, No, they didn't do a second sleep study with Bi Pap. The Pulmonologist just thinks that it will help, so is sending the company out to fit me for one because it isn't for sleep apnea he said that one wasn't necessary. Humm...bad or good idea? What do you think? di Pietro (21 Mito) > > Dear Friends, > > More and more, I am waking up during the early hours of the morning > with > > bad headaches and nausea. > > At the same time, my ability to swallow, especially at night, is > > worsening, and my voice is getting weaker. > > Those of you with oxygen at night, were am headaches one of the > reasons > > you ended up with this therapy? > > Thanks for your help. > > > > PS: I do suffer from migraines. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Since I'm not sure what the doctor is planning it is hard to say, but I wonder how he will determine the settings. I'd be interested to hear more about his plan for you. I sure hope it helps you. laurie Reply-To: Date: Tue, 22 Oct 2002 00:37:48 -0000 To: Subject: Re: Morning headaches Laurie, No, they didn't do a second sleep study with Bi Pap. The Pulmonologist just thinks that it will help, so is sending the company out to fit me for one because it isn't for sleep apnea he said that one wasn't necessary. Humm...bad or good idea? What do you think? di Pietro (21 Mito) > > Dear Friends, > > More and more, I am waking up during the early hours of the morning > with > > bad headaches and nausea. > > At the same time, my ability to swallow, especially at night, is > > worsening, and my voice is getting weaker. > > Those of you with oxygen at night, were am headaches one of the > reasons > > you ended up with this therapy? > > Thanks for your help. > > > > PS: I do suffer from migraines. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Dear , Thanks for you very helpful reply. Yes, I guess some level of sleep study would be helpful. I don't see my endo/mito doc until February, but I'll call him if this situation continues. He did send me to a pulmonary doc two years ago. Maybe it's time to see him again. You are one of the young people here--a, Nikki, Adrienne, etc., and I send you my admiration and prayers. Good luck with your studies. , I, according to my PFTs have, Severe Restrictive Pulmonary disease; however, because my CO2 levels in my blood are elevated, but not to the point that they would put me on supplemental oxygen 24/7. I too have horrendous morning headaches and nausea, and because of this my docs ordered a sleep study. It came back showing that I am sleep deprived because I do not spend very much time in the last two cycles of REM sleep. The pulmonologist thinks that this is because I am holding a signifigant amount of my CO2 (way more then during the day) at night. He put me on the Bi-Pap to try and help this as well as my migraines (I have complex migraines) and my fatigue (he questions if I may have a form of narcolepsy due to sleep deprovation) during the day. I'm starting on it this coming week. I'll let you know how it goes. His next step, if this doesn't help is to admit me for the night and use some sort of monitor to continuously monitor my blood CO2 levels as well as some sort of monitor to check my fatigue levels throughout the day. You might ask your doc for a sleep study...mine told my docs a lot about me. Peace. di Pietro (21 Mito) > Dear Friends, > More and more, I am waking up during the early hours of the morning with > bad headaches and nausea. > At the same time, my ability to swallow, especially at night, is > worsening, and my voice is getting weaker. > Those of you with oxygen at night, were am headaches one of the reasons > you ended up with this therapy? > Thanks for your help. > > PS: I do suffer from migraines. Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Dear Kristie, Hello, fellow Pennsylvanian, and thanks for your great idea about the night oximetry test. I presume that that's just that small device on a finger. Sounds like you have a very good solution. I will look into it. Many thanks. , I am on O2 therapy and one of the initial tip offs was am headaches. I had a sleep study (actually multiple) which confirmed desaturations at night. You may want to ask your doc about a nighttime oximetry study....a lot easier than a full blown sleep study. I'm due for a repeat one of those in the near future. Kristie Message: 7 Date: Fri, 18 Oct 2002 11:11:51 -0400 (EDT) From: BDS31@... Subject: Morning headaches Dear Friends, More and more, I am waking up during the early hours of the morning with bad headaches and nausea. At the same time, my ability to swallow, especially at night, is worsening, and my voice is getting weaker. Those of you with oxygen at night, were am headaches one of the reasons you ended up with this therapy? Thanks for your help. PS: I do suffer from migraines. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.401 / Virus Database: 226 - Release Date: 10/9/02 Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 , There are very few of us " young people " here. Malisa and I discussed it once. Our thought was that in our age range MS is a very common diagnosis as well as Fibromyalgia, and that a lot of people in our age range are either mis-diagnosed...or as happened in my case...the docs gave me a diagnosis of " conversion disorder " aka: stress illness. It's interesting. I'm young in age, but in a lot of ways we are all tied together here by our common experiences, and that wipes away the chronological years rather quickly. I'll admit it..I've felt bitter before while reading posts about family, children...lives...and though to myself...Why the Hell am I 21, and he/she is 40+ and how come he/she got to do that, and I can't, or won't. I have not become totally Zen with my life situation seeing as though I received my diagnosis by Cohn weeks before having the strokes that took my ability to walk. It breaks my heart. I want kids. I want my own family. I want to drive, and walk, and not swallow 42 pills a day. That's just now how it goes sometimes. Every time I start to get bitter about the age thing I remember that my pain is no different then everyone elses, and that what I am facing as a 21 yr old with this disease is just as rough as everything that those older then me are facing. If anything, I respect the difficulties in other's lives, and hope that I am here at your age to face some more. If anything, I have learned that having a social network of those of various ages is rewarding, educational...and a lot of fun. Peace, di Pietro (21 Mito) > Dear , > Thanks for you very helpful reply. Yes, I guess some level of sleep > study would be helpful. I don't see my endo/mito doc until February, but > I'll call him if this situation continues. He did send me to a pulmonary > doc two years ago. Maybe it's time to see him again. > You are one of the young people here--a, Nikki, Adrienne, etc., > and I send you my admiration and prayers. > Good luck with your studies. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 , Where in PA are you? I live not too far outside of Philly near Widner University's campus. There are a bunch of us Pennsylvanian's out here... Peace, di Pietro (21 Mito) > Dear Kristie, > Hello, fellow Pennsylvanian, and thanks for your great idea about the > night oximetry test. I presume that that's just that small device on a > finger. Sounds like you have a very good solution. > I will look into it. > Many thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Hi , lives not too far from me. She is about 1 hour north of me. I live in the foothills of the Poconos.(North east of town,Pa.) And I am about 1 1/2 hours from you. It took me about 1 hour to get to Maripat's picnic. We have alot of people from Pa. I wonder if we have the most members in our state of Pa.? I hope you are doing well. I think of you often. How is school? Hugs, Ann-Marie -- Re: Morning headaches ,Where in PA are you? I live not too far outside of Philly near Widner University's campus.There are a bunch of us Pennsylvanian's out here...Peace, di Pietro(21 Mito)> Dear Kristie,> Hello, fellow Pennsylvanian, and thanks for your great idea about the> night oximetry test. I presume that that's just that small device on a> finger. Sounds like you have a very good solution.> I will look into it.> Many thanks.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 I admire your positive attitude. I think that there are many on the list that are now older who were young at the time of diagnosis and have just aged. There are also many of us with a fairly recent diagnosis who went the same road you did with all the wrong diagnostic workups and mis-diagnoses. I am glad this topic came up, as you have pointed out a very good thing. We are all connected and our experiences and daily life are similar in many ways. On the issue of children, I think the moms and dads on the list probably feel guilt for passing this on to their children and have to support their children's decisions about having or not having children, even if we agree or not agree. I know I very much want to have grandchildren, but know it may or not happen, as my sons (not sure about the one, but suspect) have mito. I have been lucky to have a young niece that I have taken joy in. I sure wish there was an easy and accurate way to determine if each of us has the mtDNA or nDNA tranmission pattern. Maybe some day. Keep inspiring us with your wisdom. laurie Reply-To: Date: Tue, 29 Oct 2002 04:16:54 -0000 To: Subject: Re: Morning headaches , There are very few of us " young people " here. Malisa and I discussed it once. Our thought was that in our age range MS is a very common diagnosis as well as Fibromyalgia, and that a lot of people in our age range are either mis-diagnosed...or as happened in my case...the docs gave me a diagnosis of " conversion disorder " aka: stress illness. It's interesting. I'm young in age, but in a lot of ways we are all tied together here by our common experiences, and that wipes away the chronological years rather quickly. I'll admit it..I've felt bitter before while reading posts about family, children...lives...and though to myself...Why the Hell am I 21, and he/she is 40+ and how come he/she got to do that, and I can't, or won't. I have not become totally Zen with my life situation seeing as though I received my diagnosis by Cohn weeks before having the strokes that took my ability to walk. It breaks my heart. I want kids. I want my own family. I want to drive, and walk, and not swallow 42 pills a day. That's just now how it goes sometimes. Every time I start to get bitter about the age thing I remember that my pain is no different then everyone elses, and that what I am facing as a 21 yr old with this disease is just as rough as everything that those older then me are facing. If anything, I respect the difficulties in other's lives, and hope that I am here at your age to face some more. If anything, I have learned that having a social network of those of various ages is rewarding, educational...and a lot of fun. Peace, di Pietro (21 Mito) > Dear , > Thanks for you very helpful reply. Yes, I guess some level of sleep > study would be helpful. I don't see my endo/mito doc until February, but > I'll call him if this situation continues. He did send me to a pulmonary > doc two years ago. Maybe it's time to see him again. > You are one of the young people here--a, Nikki, Adrienne, etc., > and I send you my admiration and prayers. > Good luck with your studies. > Quote Link to comment Share on other sites More sharing options...
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