Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Donna If you have ruled out sleep apnea, then you might want to ask your doctor to work with you on re-scheduling your meds if possible. Some people have problems sleeping when they take their Coq10 and Carnitor just before bed. If you take calcium, take it before bed and it should help. laurie > > Reply-To: > Date: Sun, 18 Jul 2004 21:19:28 -0400 > To: > > Subject: > > I Have a question and am not sure if this subject has been discussed before. I > along with my children ages 18 and 15 seem to have problems sleeping. We all > have mito and the kids have Dysautonomia I feel I do also but have not been > tested as of yet, my son is more severe. When I mention this to some Doc's > they say you all just have poor sleeping habits, or you are under stress. Now > my son who is more severe has been sick most of his life and in and out of the > hospital and I have never had a problem sleeping until a few years ago. I am > on Ambien but need to get off does anyone have any advice. When I read about > Mito and Dysautonomia I see not being able to sleep is a side effect, my > daughter who is 15 was put on Lexapro for her Dysautonomia and refuses to take > it because she had a bad experience on Wellbutrin. Thank you all for you help. > Sincerely, > Donna > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi Donna, I also have a hard time sleeping, if I am not in a crash, if I am in a crash, then I can sleep 36 hours straight without getting up for anything. But as far as normal sleeping patterns, I have noticed that if I overdo it during the day (physical excerise, like yard work, up and down the steps doing laundry, etc..) I tend to have a very hard time falling asleep, even though I am exhausted. I can't take CoQ10 in the evening at all. If I don't take it in the morning, than I don't take it at all that day. I had a sleep study done 1 yr.ago and it was inconclusive b/c I never fell asleep that night. I was in alot of pain and I was so uncomfortable with all those wires all over me. I am sure I could benefit by using a Cpap or a BiPap. Hugs, Ann-Marie I Have a question and am not sure if this subject has been discussed before. I along with my children ages 18 and 15 seem to have problems sleeping. We all have mito and the kids have Dysautonomia I feel I do also but have not been tested as of yet, my son is more severe. When I mention this to some Doc's they say you all just have poor sleeping habits, or you are under stress. Now my son who is more severe has been sick most of his life and in and out of the hospital and I have never had a problem sleeping until a few years ago. I am on Ambien but need to get off does anyone have any advice. When I read about Mito and Dysautonomia I see not being able to sleep is a side effect, my daughter who is 15 was put on Lexapro for her Dysautonomia and refuses to take it because she had a bad experience on Wellbutrin. Thank you all for you help. Sincerely, Donna 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. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Also, you might want to stay away from the B vitamins later in the day too. Laureta Fitzgerald wrote: >Donna > >If you have ruled out sleep apnea, then you might want to ask your doctor to >work with you on re-scheduling your meds if possible. Some people have >problems sleeping when they take their Coq10 and Carnitor just before bed. >If you take calcium, take it before bed and it should help. > >laurie > > > >> >>Reply-To: >>Date: Sun, 18 Jul 2004 21:19:28 -0400 >>To: > >>Subject: >> >>I Have a question and am not sure if this subject has been discussed before. I >>along with my children ages 18 and 15 seem to have problems sleeping. We all >>have mito and the kids have Dysautonomia I feel I do also but have not been >>tested as of yet, my son is more severe. When I mention this to some Doc's >>they say you all just have poor sleeping habits, or you are under stress. Now >>my son who is more severe has been sick most of his life and in and out of the >>hospital and I have never had a problem sleeping until a few years ago. I am >>on Ambien but need to get off does anyone have any advice. When I read about >>Mito and Dysautonomia I see not being able to sleep is a side effect, my >>daughter who is 15 was put on Lexapro for her Dysautonomia and refuses to take >>it because she had a bad experience on Wellbutrin. Thank you all for you help. >>Sincerely, >>Donna >> >> >> >>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. >> >>Personal attacks are not permitted on the list and anyone who sends one is >>automatically moderated or removed depending on the severity of the attack. >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Donna Heat does this to me. Besides trying to stay cool which impossible in a school and house without air conditioning and a heat index of 95. I often take extra CoQ and drink lots of water and gatorad. laurie > > Reply-To: > Date: Fri, 27 Aug 2004 12:21:16 -0400 > To: > > Subject: > > Hi everyone, > First I would like to tell Lynda I am also very sorry to hear about Dwyane > getting worse and will keeep your family in my prayers. I don't know if anyone > has any advice to give me as I don't know if this is mito related or not. I > feel it is all day yesterday and today I feel as if I were run over by a > truck. Every muscle and joint in my body hurts, I mean I can barely get > dressed by myself these last few days. I also have heat intolerance I feel so > bad I look forward to hearing from you . Maybe I need to start my carnitor, > COQ10 and vitamin B complex take care and hugs to you all. > Donna > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Donna, Sounds like a crash to me. Try to get more rest and yes start the cocktail, but do it slowly and only one at a time. I would start with the CoQ10 first and than in a few weeks add another one and so forth. Try to limit your activities and rest or sleep as much as you can. Your body needs a break and needs time to heal. Good luck and I hope you start to feel better soon. Hugs, Ann-Marie Hi everyone, First I would like to tell Lynda I am also very sorry to hear about Dwyane getting worse and will keeep your family in my prayers. I don't know if anyone has any advice to give me as I don't know if this is mito related or not. I feel it is all day yesterday and today I feel as if I were run over by a truck. Every muscle and joint in my body hurts, I mean I can barely get dressed by myself these last few days. I also have heat intolerance I feel so bad I look forward to hearing from you . Maybe I need to start my carnitor, COQ10 and vitamin B complex take care and hugs to you all. Donna 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. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Donna, Sounds like a crash to me. Try to get more rest and yes start the cocktail, but do it slowly and only one at a time. I would start with the CoQ10 first and than in a few weeks add another one and so forth. Try to limit your activities and rest or sleep as much as you can. Your body needs a break and needs time to heal. Good luck and I hope you start to feel better soon. Hugs, Ann-Marie Hi everyone, First I would like to tell Lynda I am also very sorry to hear about Dwyane getting worse and will keeep your family in my prayers. I don't know if anyone has any advice to give me as I don't know if this is mito related or not. I feel it is all day yesterday and today I feel as if I were run over by a truck. Every muscle and joint in my body hurts, I mean I can barely get dressed by myself these last few days. I also have heat intolerance I feel so bad I look forward to hearing from you . Maybe I need to start my carnitor, COQ10 and vitamin B complex take care and hugs to you all. Donna 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. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Ann- Marie, Thank you for your email that is what I thought also that it was a crash. The pain was so bad last night I could barely walk I was crying if it keeps up I will be calling my PCP for a referral to see a rheumatologist. The pain is in the joints in my wrist, fingers, knees, ankles are really bad and my lower back. I still have the muscle pain and stiffness and my constipation is getting worse which I have had my whole entire life. I feel like this can't be happening as I have to take care of my kids receives IV hyration once a month. Thanks again and take care. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Ann- Marie, Thank you for your email that is what I thought also that it was a crash. The pain was so bad last night I could barely walk I was crying if it keeps up I will be calling my PCP for a referral to see a rheumatologist. The pain is in the joints in my wrist, fingers, knees, ankles are really bad and my lower back. I still have the muscle pain and stiffness and my constipation is getting worse which I have had my whole entire life. I feel like this can't be happening as I have to take care of my kids receives IV hyration once a month. Thanks again and take care. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Donna I have chronic tendonitis from muscle weakness. Your joint pain might be this or any number of other things. laurie > > Reply-To: > Date: Sat, 28 Aug 2004 8:08:41 -0400 > To: > > Subject: Re: Mitoldies > > Hi Ann- Marie, > Thank you for your email that is what I thought also that it was a crash. The > pain was so bad last night I could barely walk I was crying if it keeps up I > will be calling my PCP for a referral to see a rheumatologist. The pain is in > the joints in my wrist, fingers, knees, ankles are really bad and my lower > back. I still have the muscle pain and stiffness and my constipation is > getting worse which I have had my whole entire life. I feel like this can't be > happening as I have to take care of my kids receives IV hyration once > a month. Thanks again and take care. > Donna > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Donna I have chronic tendonitis from muscle weakness. Your joint pain might be this or any number of other things. laurie > > Reply-To: > Date: Sat, 28 Aug 2004 8:08:41 -0400 > To: > > Subject: Re: Mitoldies > > Hi Ann- Marie, > Thank you for your email that is what I thought also that it was a crash. The > pain was so bad last night I could barely walk I was crying if it keeps up I > will be calling my PCP for a referral to see a rheumatologist. The pain is in > the joints in my wrist, fingers, knees, ankles are really bad and my lower > back. I still have the muscle pain and stiffness and my constipation is > getting worse which I have had my whole entire life. I feel like this can't be > happening as I have to take care of my kids receives IV hyration once > a month. Thanks again and take care. > Donna > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Laurie, Could it still be related to the mito thanks and who (doctor would I see first I live in Cleveland). Hugs, Donna > > > Date: 2004/08/28 Sat AM 08:40:20 EDT > To: > > Subject: Re: Mitoldies > > Donna > > I have chronic tendonitis from muscle weakness. Your joint pain might be > this or any number of other things. > > laurie > > > > > Reply-To: > > Date: Sat, 28 Aug 2004 8:08:41 -0400 > > To: > > > Subject: Re: Mitoldies > > > > Hi Ann- Marie, > > Thank you for your email that is what I thought also that it was a crash. The > > pain was so bad last night I could barely walk I was crying if it keeps up I > > will be calling my PCP for a referral to see a rheumatologist. The pain is in > > the joints in my wrist, fingers, knees, ankles are really bad and my lower > > back. I still have the muscle pain and stiffness and my constipation is > > getting worse which I have had my whole entire life. I feel like this can't be > > happening as I have to take care of my kids receives IV hyration once > > a month. Thanks again and take care. > > Donna > > > > > > > > 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. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Laurie, Could it still be related to the mito thanks and who (doctor would I see first I live in Cleveland). Hugs, Donna > > > Date: 2004/08/28 Sat AM 08:40:20 EDT > To: > > Subject: Re: Mitoldies > > Donna > > I have chronic tendonitis from muscle weakness. Your joint pain might be > this or any number of other things. > > laurie > > > > > Reply-To: > > Date: Sat, 28 Aug 2004 8:08:41 -0400 > > To: > > > Subject: Re: Mitoldies > > > > Hi Ann- Marie, > > Thank you for your email that is what I thought also that it was a crash. The > > pain was so bad last night I could barely walk I was crying if it keeps up I > > will be calling my PCP for a referral to see a rheumatologist. The pain is in > > the joints in my wrist, fingers, knees, ankles are really bad and my lower > > back. I still have the muscle pain and stiffness and my constipation is > > getting worse which I have had my whole entire life. I feel like this can't be > > happening as I have to take care of my kids receives IV hyration once > > a month. Thanks again and take care. > > Donna > > > > > > > > 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. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Donna I would suggest Cleveland Clinic - probably Neurology to start with. Even though Dr. Cohen doesn't see new adult patients, he confers with the adult neuros. Maybe someone on the list could suggest one of the adult docs. laurie > > Reply-To: > Date: Sat, 28 Aug 2004 8:46:10 -0400 > To: > > Subject: Re: Re: Mitoldies > > Hi Laurie, > Could it still be related to the mito thanks and who (doctor would I see first > I live in Cleveland). > Hugs, > Donna > >> >> >> Date: 2004/08/28 Sat AM 08:40:20 EDT >> To: > >> Subject: Re: Mitoldies >> >> Donna >> >> I have chronic tendonitis from muscle weakness. Your joint pain might be >> this or any number of other things. >> >> laurie >> >>> >>> Reply-To: >>> Date: Sat, 28 Aug 2004 8:08:41 -0400 >>> To: > >>> Subject: Re: Mitoldies >>> >>> Hi Ann- Marie, >>> Thank you for your email that is what I thought also that it was a crash. >>> The >>> pain was so bad last night I could barely walk I was crying if it keeps up I >>> will be calling my PCP for a referral to see a rheumatologist. The pain is >>> in >>> the joints in my wrist, fingers, knees, ankles are really bad and my lower >>> back. I still have the muscle pain and stiffness and my constipation is >>> getting worse which I have had my whole entire life. I feel like this can't >>> be >>> happening as I have to take care of my kids receives IV hyration >>> once >>> a month. Thanks again and take care. >>> Donna >>> >>> >>> >>> 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. >>> >>> Personal attacks are not permitted on the list and anyone who sends one is >>> automatically moderated or removed depending on the severity of the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Yes, Donna. Carnitor tastes (and smells) bad. I'm sorry. No chat tomorrow night but they do resume weekly starting next Monday. Sorry about that too but be sure to watch the telethon. I hope you have a good weekend too. For the members in Florida - if you're reading this - I guess you made out well with the storm. My sincere thoughts and prayers go out to the who have been or still may be affected by massive hurricane Frances. Let's hope Ivan stays far from our coastline. Alice Hi everyone, I have a question I feel my mito is really starting to act up I am tired very tired have muscle weakness and sore and my arthritis is really acting up. I started my COQ10 and Carnintor (liquid)and I am feeling a little better my question is do the carnintor pills taste bad I am on the liquid and I am worse than a kid I don't like the taste. Can the liquid be mixed with juice? Thanks for all of your help I hope everyone has a great weekend is there a chat tomorrow I sure have missed everyone. Donna K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Yes, Donna. Carnitor tastes (and smells) bad. I'm sorry. No chat tomorrow night but they do resume weekly starting next Monday. Sorry about that too but be sure to watch the telethon. I hope you have a good weekend too. For the members in Florida - if you're reading this - I guess you made out well with the storm. My sincere thoughts and prayers go out to the who have been or still may be affected by massive hurricane Frances. Let's hope Ivan stays far from our coastline. Alice Hi everyone, I have a question I feel my mito is really starting to act up I am tired very tired have muscle weakness and sore and my arthritis is really acting up. I started my COQ10 and Carnintor (liquid)and I am feeling a little better my question is do the carnintor pills taste bad I am on the liquid and I am worse than a kid I don't like the taste. Can the liquid be mixed with juice? Thanks for all of your help I hope everyone has a great weekend is there a chat tomorrow I sure have missed everyone. Donna K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Yes, Donna. Carnitor tastes (and smells) bad. I'm sorry. No chat tomorrow night but they do resume weekly starting next Monday. Sorry about that too but be sure to watch the telethon. I hope you have a good weekend too. For the members in Florida - if you're reading this - I guess you made out well with the storm. My sincere thoughts and prayers go out to the who have been or still may be affected by massive hurricane Frances. Let's hope Ivan stays far from our coastline. Alice Hi everyone, I have a question I feel my mito is really starting to act up I am tired very tired have muscle weakness and sore and my arthritis is really acting up. I started my COQ10 and Carnintor (liquid)and I am feeling a little better my question is do the carnintor pills taste bad I am on the liquid and I am worse than a kid I don't like the taste. Can the liquid be mixed with juice? Thanks for all of your help I hope everyone has a great weekend is there a chat tomorrow I sure have missed everyone. Donna K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Donna, the Caarnitor pills are very bad--big almost the size of a nickel and very chalkly. That is why I switched to the liquid. Yes, the liquid can be mixed in like apple juice and I put it in chocolate milk for my son. Someone else said that apple juice works but not orange juice. The tablets can also be crushed and put like in apple sauce. My son still does not like the cherry taste so he now takes carniqgel from Tishcon in capsules. Each one contains 30 mg (like 90 mg regular) Coq10 and 250 mg carnitine by sigma tau. He has mild symptoms so 3 of these are enough for him. Tishcon also make carnitine capsules. The website is epic4health.com. Janet Sample Re: > Yes, Donna. Carnitor tastes (and smells) bad. I'm sorry. No chat tomorrow night but they do resume weekly starting next Monday. Sorry about that too but be sure to watch the telethon. I hope you have a good weekend too. For the members in Florida - if you're reading this - I guess you made out well with the storm. My sincere thoughts and prayers go out to the who have been or still may be affected by massive hurricane Frances. Let's hope Ivan stays far from our coastline. > > Alice > > > Hi everyone, > I have a question I feel my mito is really starting to act up I am tired very tired have muscle weakness and sore and my arthritis is really acting up. I started my COQ10 and Carnintor (liquid)and I am feeling a little better my question is do the carnintor pills taste bad I am on the liquid and I am worse than a kid I don't like the taste. Can the liquid be mixed with juice? Thanks for all of your help I hope everyone has a great weekend is there a chat tomorrow I sure have missed everyone. > Donna K > > > Quote Link to comment Share on other sites More sharing options...
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