Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Yes I do have problems with Foggy Brain. I was diagnosed by Dr. Cohen at the Cleveland Clinic with a mitochondrial myopathy. He never mentioned this symtom but I definitely struggle with it. I am a veterinarian and I will pause mid-sentence while speaking with clients just trying to remember a simple word sometimes. Very frustrating! Dr. Cohen put me on a high carb diet, low fat. Very difficult since I have celiac disease as well (no gluten ie; wheat). It did not help at all. He has since put me back on my normal diet. --- In , " blacklab01129 " wrote: > > Hi everyone, > Do any of you have problems with foggy brain? Its a term my son > uses to describe very appropriatley how we feel alot. My brain just > seems to have moments of decreased processing or something. A brown > out if you will. Along with mito or I should say as part of mito we > have problems with ADD Our foggy brain makes us feel like only a few > moments have gone by when really 30 min have elapsed. It makes our > ability to function so challenging. He is 15 and school is such a > challenge for him. He is fortunatly very bright but is having > trouble keeping up fatigue really impairs his day but when that is > compounded by this foggy brain it really put him at a disadvantage. > Any thoughts or ideas would be appreciated. Thanks and many > blessings, Theresa > > By the way do any of you restrict your carbs and feel better. Like > have any of you tried Protein Power or Atkins and noticed that you > feel better just curious > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Regarding the diet, this is another thing that is YMMV for mito patients. I do well on a high protein, high fat, low carb diet. High carbs make me pass out. I can fast for over 12 hours relatively easily, others on this list need to eat frequently and even eat small amounts overnight. It would be nice to have some nutritional guidance, but it seems hit and miss, even for the " mito experts " . The reason I first tried an Atkins-type diet is because my absence seizures were getting pretty bad, and I thought a diet that tended towards ketosis would help. Now it seems to be something other than that, as my health is improved by the diet even when not in ketosis. I work full time as a scientist, and find that " foggy brain " helps my ADD stay under control, LOL! I am able to hold a conversation, but word finding issues get worse with stress, and I find my writing has suffered also, where I regularly drop the last letters of words. It just takes me more time to do things, but since I was originally a pretty quick worker, now I'm about average with the extra checking time. I had neuropsych testing where they showed a disconnect between my IQ and performance on memory tests. Take care, RH > > > > Hi everyone, > > Do any of you have problems with foggy brain? Its a term my > son > > uses to describe very appropriatley how we feel alot. My brain > just > > seems to have moments of decreased processing or something. A > brown > > out if you will. Along with mito or I should say as part of mito > we > > have problems with ADD Our foggy brain makes us feel like only a > few > > moments have gone by when really 30 min have elapsed. It makes > our > > ability to function so challenging. He is 15 and school is such a > > challenge for him. He is fortunatly very bright but is having > > trouble keeping up fatigue really impairs his day but when that is > > compounded by this foggy brain it really put him at a disadvantage. > > Any thoughts or ideas would be appreciated. Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and feel better. > Like > > have any of you tried Protein Power or Atkins and noticed that you > > feel better just curious > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi, I have alot of head issues. Foggy is definetly one of them. Especially when like you say you pause to think of that word, or you are talking and a entirely new word comes out, and don't even relate to what you were trying to say. Like,hi how are you sam, and you say Tina, or please pass the keptchup and you might say fork, table, etc. I also can't comprehend anymore, so I don't fill out forms either. Forget fullness is the pits. Mind you I used to run a business. Now I can't even manage my own bills. I find too that I stare into space and don't realize how much time has passed or even that I was staring off into space. I never was on a special diet. I think it also depends on what type of mito you have. I have Melas syndrome --- mitocytopathy mitocytopathy@...> wrote: > Yes I do have problems with Foggy Brain. I was > diagnosed by Dr. > Cohen at the Cleveland Clinic with a mitochondrial > myopathy. He > never mentioned this symtom but I definitely > struggle with it. I am > a veterinarian and I will pause mid-sentence while > speaking with > clients just trying to remember a simple word > sometimes. Very > frustrating! Dr. Cohen put me on a high carb diet, > low fat. Very > difficult since I have celiac disease as well (no > gluten ie; > wheat). It did not help at all. He has since put > me back on my > normal > diet. > > > > > --- > In , " blacklab01129 " > > wrote: > > > > Hi everyone, > > Do any of you have problems with foggy brain? > Its a term my > son > > uses to describe very appropriatley how we feel > alot. My brain > just > > seems to have moments of decreased processing or > something. A > brown > > out if you will. Along with mito or I should say > as part of mito > we > > have problems with ADD Our foggy brain makes us > feel like only a > few > > moments have gone by when really 30 min have > elapsed. It makes > our > > ability to function so challenging. He is 15 and > school is such a > > challenge for him. He is fortunatly very bright > but is having > > trouble keeping up fatigue really impairs his day > but when that is > > compounded by this foggy brain it really put him > at a disadvantage. > > Any thoughts or ideas would be appreciated. > Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and > feel better. > Like > > have any of you tried Protein Power or Atkins and > noticed that you > > feel better just curious > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I can so relate to what you say Irene eg staring into space (usually while also mindlessly jiggling leg/s). I have been wondering though whether the using wrong words etc is a foggy memory issue or telling of stroke-like episodes ? does anyone know? pamela (also melas) Re: Re: foggy brain Hi, I have alot of head issues. Foggy is definetly one of them. Especially when like you say you pause to think of that word, or you are talking and a entirely new word comes out, and don't even relate to what you were trying to say. Like,hi how are you sam, and you say Tina, or please pass the keptchup and you might say fork, table, etc. I also can't comprehend anymore, so I don't fill out forms either. Forget fullness is the pits. Mind you I used to run a business. Now I can't even manage my own bills. I find too that I stare into space and don't realize how much time has passed or even that I was staring off into space. I never was on a special diet. I think it also depends on what type of mito you have. I have Melas syndrome --- mitocytopathy mitocytopathy@...> wrote: > Yes I do have problems with Foggy Brain. I was > diagnosed by Dr. > Cohen at the Cleveland Clinic with a mitochondrial > myopathy. He > never mentioned this symtom but I definitely > struggle with it. I am > a veterinarian and I will pause mid-sentence while > speaking with > clients just trying to remember a simple word > sometimes. Very > frustrating! Dr. Cohen put me on a high carb diet, > low fat. Very > difficult since I have celiac disease as well (no > gluten ie; > wheat). It did not help at all. He has since put > me back on my > normal > diet. > > > > > --- > In , " blacklab01129 " > > wrote: > > > > Hi everyone, > > Do any of you have problems with foggy brain? > Its a term my > son > > uses to describe very appropriatley how we feel > alot. My brain > just > > seems to have moments of decreased processing or > something. A > brown > > out if you will. Along with mito or I should say > as part of mito > we > > have problems with ADD Our foggy brain makes us > feel like only a > few > > moments have gone by when really 30 min have > elapsed. It makes > our > > ability to function so challenging. He is 15 and > school is such a > > challenge for him. He is fortunatly very bright > but is having > > trouble keeping up fatigue really impairs his day > but when that is > > compounded by this foggy brain it really put him > at a disadvantage. > > Any thoughts or ideas would be appreciated. > Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and > feel better. > Like > > have any of you tried Protein Power or Atkins and > noticed that you > > feel better just curious > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Pamela I can only relate to myself, but I have had word finding problems for many years (has gotten worse over time), but have never had an SLE. laurie > I can so relate to what you say Irene eg staring into space (usually while > also mindlessly jiggling leg/s). I have been wondering though whether the > using wrong words etc is a foggy memory issue or telling of stroke-like > episodes ? does anyone know? pamela (also melas) Re: Re: foggy brain > > > > Hi, I have alot of head issues. Foggy is definetly one > of them. Especially when like you say you pause to > think of that word, or you are talking and a entirely > new word comes out, and don't even relate to what you > were trying to say. Like,hi how are you sam, and you > say Tina, or please pass the keptchup and you might > say fork, table, etc. I also can't comprehend anymore, > so I don't fill out forms either. Forget fullness is > the pits. Mind you I used to run a business. Now I > can't even manage my own bills. I find too that I > stare into space and don't realize how much time has > passed or even that I was staring off into space. I > never was on a special diet. I think it also depends > on what type of mito you have. I have Melas syndrome > > --- mitocytopathy mitocytopathy@...> wrote: > > > Yes I do have problems with Foggy Brain. I was > > diagnosed by Dr. > > Cohen at the Cleveland Clinic with a mitochondrial > > myopathy. He > > never mentioned this symtom but I definitely > > struggle with it. I am > > a veterinarian and I will pause mid-sentence while > > speaking with > > clients just trying to remember a simple word > > sometimes. Very > > frustrating! Dr. Cohen put me on a high carb diet, > > low fat. Very > > difficult since I have celiac disease as well (no > > gluten ie; > > wheat). It did not help at all. He has since put > > me back on my > > normal > > diet. > > > > > > > > > > --- > > In , " blacklab01129 " > > > > wrote: > > > > > > Hi everyone, > > > Do any of you have problems with foggy brain? > > Its a term my > > son > > > uses to describe very appropriatley how we feel > > alot. My brain > > just > > > seems to have moments of decreased processing or > > something. A > > brown > > > out if you will. Along with mito or I should say > > as part of mito > > we > > > have problems with ADD Our foggy brain makes us > > feel like only a > > few > > > moments have gone by when really 30 min have > > elapsed. It makes > > our > > > ability to function so challenging. He is 15 and > > school is such a > > > challenge for him. He is fortunatly very bright > > but is having > > > trouble keeping up fatigue really impairs his day > > but when that is > > > compounded by this foggy brain it really put him > > at a disadvantage. > > > Any thoughts or ideas would be appreciated. > > Thanks and many > > > blessings, Theresa > > > > > > By the way do any of you restrict your carbs and > > feel better. > > Like > > > have any of you tried Protein Power or Atkins and > > noticed that you > > > feel better just curious > > > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I have MELAS & foggy brain issues. There are times that the word is on the tip of my tongue (and it's an easy one) and for the life of me I can't seem to find it, especially when I'm in a hurry to say it. Using the wrong word is pretty common, too. I used to have a pretty quick mind & a huge vocabulary, and I still do just sometimes not when I need it. I definitely understand the comment concerning filling out forms, but my added problem is weakness and intermittent tremors in my left hand/arm (I'm left dominant). The combination is very frustrating! I'm scheduled for a MRI/MRA of the brain next week and an EEG in April. Hopefully, they will shed some light on these problems, but probably won't. To answer your question, though, according to my unofficial research, I think it's a pretty common symptom in mito, but in particular MELAS. Caroline Pointer Re: Re: foggy brain > > > > Hi, I have alot of head issues. Foggy is definetly one > of them. Especially when like you say you pause to > think of that word, or you are talking and a entirely > new word comes out, and don't even relate to what you > were trying to say. Like,hi how are you sam, and you > say Tina, or please pass the keptchup and you might > say fork, table, etc. I also can't comprehend anymore, > so I don't fill out forms either. Forget fullness is > the pits. Mind you I used to run a business. Now I > can't even manage my own bills. I find too that I > stare into space and don't realize how much time has > passed or even that I was staring off into space. I > never was on a special diet. I think it also depends > on what type of mito you have. I have Melas syndrome > > --- mitocytopathy mitocytopathy@...mitocytopathy@...>> wrote: > > > Yes I do have problems with Foggy Brain. I was > > diagnosed by Dr. > > Cohen at the Cleveland Clinic with a mitochondrial > > myopathy. He > > never mentioned this symtom but I definitely > > struggle with it. I am > > a veterinarian and I will pause mid-sentence while > > speaking with > > clients just trying to remember a simple word > > sometimes. Very > > frustrating! Dr. Cohen put me on a high carb diet, > > low fat. Very > > difficult since I have celiac disease as well (no > > gluten ie; > > wheat). It did not help at all. He has since put > > me back on my > > normal > > diet. > > > > > > > > > > --- > > In >, " blacklab01129 " > > > > wrote: > > > > > > Hi everyone, > > > Do any of you have problems with foggy brain? > > Its a term my > > son > > > uses to describe very appropriatley how we feel > > alot. My brain > > just > > > seems to have moments of decreased processing or > > something. A > > brown > > > out if you will. Along with mito or I should say > > as part of mito > > we > > > have problems with ADD Our foggy brain makes us > > feel like only a > > few > > > moments have gone by when really 30 min have > > elapsed. It makes > > our > > > ability to function so challenging. He is 15 and > > school is such a > > > challenge for him. He is fortunatly very bright > > but is having > > > trouble keeping up fatigue really impairs his day > > but when that is > > > compounded by this foggy brain it really put him > > at a disadvantage. > > > Any thoughts or ideas would be appreciated. > > Thanks and many > > > blessings, Theresa > > > > > > By the way do any of you restrict your carbs and > > feel better. > > Like > > > have any of you tried Protein Power or Atkins and > > noticed that you > > > feel better just curious > > > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Caroline There is some research that waving your arms around when you can't find a word helps you to retrieve it. That must be why I have always been told to stop talking with my hands. I've never been able to sit on my hands and talk. My son has always had tremors and I have them, more at times than other times. We have found that holding our arms against our bodies and bracing our wrists against something is helpful. I have a terrible time writing on a clipboard. laurie > I have MELAS & foggy brain issues. There are times that the word is on the > tip of my tongue (and it's an easy one) and for the life of me I can't seem > to find it, especially when I'm in a hurry to say it. Using the wrong word > is pretty common, too. I used to have a pretty quick mind & a huge > vocabulary, and I still do just sometimes not when I need it. I definitely > understand the comment concerning filling out forms, but my added problem is > weakness and intermittent tremors in my left hand/arm (I'm left dominant). > The combination is very frustrating! I'm scheduled for a MRI/MRA of the > brain next week and an EEG in April. Hopefully, they will shed some light > on these problems, but probably won't. To answer your question, though, > according to my unofficial research, I think it's a pretty common symptom in > mito, but in particular MELAS. > > Caroline Pointer > > Re: Re: foggy brain > > > > > > > > Hi, I have alot of head issues. Foggy is definetly one > > of them. Especially when like you say you pause to > > think of that word, or you are talking and a entirely > > new word comes out, and don't even relate to what you > > were trying to say. Like,hi how are you sam, and you > > say Tina, or please pass the keptchup and you might > > say fork, table, etc. I also can't comprehend anymore, > > so I don't fill out forms either. Forget fullness is > > the pits. Mind you I used to run a business. Now I > > can't even manage my own bills. I find too that I > > stare into space and don't realize how much time has > > passed or even that I was staring off into space. I > > never was on a special diet. I think it also depends > > on what type of mito you have. I have Melas syndrome > > > > --- mitocytopathy > mitocytopathy@...mitocytopathy@...>> wrote: > > > > > Yes I do have problems with Foggy Brain. I was > > > diagnosed by Dr. > > > Cohen at the Cleveland Clinic with a mitochondrial > > > myopathy. He > > > never mentioned this symtom but I definitely > > > struggle with it. I am > > > a veterinarian and I will pause mid-sentence while > > > speaking with > > > clients just trying to remember a simple word > > > sometimes. Very > > > frustrating! Dr. Cohen put me on a high carb diet, > > > low fat. Very > > > difficult since I have celiac disease as well (no > > > gluten ie; > > > wheat). It did not help at all. He has since put > > > me back on my > > > normal > > > diet. > > > > > > > > > > > > > > > --- > > > In >, > " blacklab01129 " > > > > > > > wrote: > > > > > > > > Hi everyone, > > > > Do any of you have problems with foggy brain? > > > Its a term my > > > son > > > > uses to describe very appropriatley how we feel > > > alot. My brain > > > just > > > > seems to have moments of decreased processing or > > > something. A > > > brown > > > > out if you will. Along with mito or I should say > > > as part of mito > > > we > > > > have problems with ADD Our foggy brain makes us > > > feel like only a > > > few > > > > moments have gone by when really 30 min have > > > elapsed. It makes > > > our > > > > ability to function so challenging. He is 15 and > > > school is such a > > > > challenge for him. He is fortunatly very bright > > > but is having > > > > trouble keeping up fatigue really impairs his day > > > but when that is > > > > compounded by this foggy brain it really put him > > > at a disadvantage. > > > > Any thoughts or ideas would be appreciated. > > > Thanks and many > > > > blessings, Theresa > > > > > > > > By the way do any of you restrict your carbs and > > > feel better. > > > Like > > > > have any of you tried Protein Power or Atkins and > > > noticed that you > > > > feel better just curious > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 how funny is that - i'll be waving my arms around all the time then - hallelujiah! Re: Re: foggy brain There is some research that waving your arms around when you can't find a word helps you to retrieve it. That must be why I have always been told to stop talking with my hands. I've never been able to sit on my hands and talk. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 This one is so, so, true. I am Italian and they say we always have to talk with our hands. Well I do all the time. Matter in fact when I was a little girl, my birthstone is Opal. It is a very soft gem. Well my parents felt I was old enough now to get a birthstone ring. Well, guess what, I constantly wound up breaking the stone, cause I would be talking and using my hands and bingo the stone was broken. Well, they replaced it once or twice. But after that, I had no more birthstone ring. Till this day, I can't wear my favorite opal ring. My hubby even tried having me sit on my hands and talk, I was amazed I really couldn't talk. So thanks for this tid bit. I laughed like heck. I will be waving my hands around too now, just not with any opal rings on. --- pamelama33 pamelama33@...> wrote: > how funny is that - i'll be waving my arms around > all the time then - hallelujiah! > Re: Re: foggy brain > > > > There is some research that waving your arms > around when you can't > find a word helps you to retrieve it. That must be > why I have always > been told to stop talking with my hands. I've > never been able to sit > on my hands and talk. > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Irene I never wore an opal ring, but it probably would have broken as yours did. Your story made me smile. laurie > This one is so, so, true. I am Italian and they say we > always have to talk with our hands. Well I do all the > time. Matter in fact when I was a little girl, my > birthstone is Opal. It is a very soft gem. Well my > parents felt I was old enough now to get a birthstone > ring. Well, guess what, I constantly wound up breaking > the stone, cause I would be talking and using my hands > and bingo the stone was broken. Well, they replaced it > once or twice. But after that, I had no more > birthstone ring. Till this day, I can't wear my > favorite opal ring. My hubby even tried having me sit > on my hands and talk, I was amazed I really couldn't > talk. So thanks for this tid bit. I laughed like heck. > I will be waving my hands around too now, just not > with any opal rings on. > > > --- pamelama33 pamelama33@...> wrote: > > > how funny is that - i'll be waving my arms around > > all the time then - hallelujiah! > > Re: Re: foggy brain > > > > > > > > There is some research that waving your arms > > around when you can't > > find a word helps you to retrieve it. That must be > > why I have always > > been told to stop talking with my hands. I've > > never been able to sit > > on my hands and talk. > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Just FYI to the newer people on the list - I've had many (about eight?) brain MRI's and MRA's, with and without contrast, and all have been normal. Therefore, I think that a normal brain MRI doesn't mean there isn't a cognitive issue. I did however have an abnormal SPECT and MR SPECT, which can look specifically for lactate buildup. Also had a 48-hour EEG, which only found " slow waves " and a slow heart rate intermittently (under 50 bpm). Had a few regular EEG's too, and VEP's. I have had SLE's and absence seizures, although lately they are well- controlled by my version of the mito cocktail. Take care, RH > > > > > > > > Hi everyone, > > > > Do any of you have problems with foggy brain? > > > Its a term my > > > son > > > > uses to describe very appropriatley how we feel > > > alot. My brain > > > just > > > > seems to have moments of decreased processing or > > > something. A > > > brown > > > > out if you will. Along with mito or I should say > > > as part of mito > > > we > > > > have problems with ADD Our foggy brain makes us > > > feel like only a > > > few > > > > moments have gone by when really 30 min have > > > elapsed. It makes > > > our > > > > ability to function so challenging. He is 15 and > > > school is such a > > > > challenge for him. He is fortunatly very bright > > > but is having > > > > trouble keeping up fatigue really impairs his day > > > but when that is > > > > compounded by this foggy brain it really put him > > > at a disadvantage. > > > > Any thoughts or ideas would be appreciated. > > > Thanks and many > > > > blessings, Theresa > > > > > > > > By the way do any of you restrict your carbs and > > > feel better. > > > Like > > > > have any of you tried Protein Power or Atkins and > > > noticed that you > > > > feel better just curious > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 I do not know what causes memory and using the wrong words sle or memory. I first really noticed my sister doing this shortly after her 2nd coma in 1996 when they came back from their trip to Florida. She had a stroke shortly after coming back. She kept saying sea works and told my nephew to put his snow boots on (it was spring and he was in the sand box). My son was using the wrong words and talking like a two year back in Nov 2002. I contacted the doc who diagnosed my sister and I and he said it sounded like a mini stroke. He was also having constipation/dysmobility issues so we tested for the mutuation we knew my sister and I had and found he had it also--although he also has mild symptoms as I do. I often when rushed or tired can not find the word I am looking for. I sometimes also use the wrong word like told my son to put the clothes in the dishwasher. Or cannot think of the word for living room. Well, that is allI know of. Our family has MELAS. My sister and mother were more affected and died from the disease. Janet Sample Re: Re: foggy brain Hi, I have alot of head issues. Foggy is definetly one of them. Especially when like you say you pause to think of that word, or you are talking and a entirely new word comes out, and don't even relate to what you were trying to say. Like,hi how are you sam, and you say Tina, or please pass the keptchup and you might say fork, table, etc. I also can't comprehend anymore, so I don't fill out forms either. Forget fullness is the pits. Mind you I used to run a business. Now I can't even manage my own bills. I find too that I stare into space and don't realize how much time has passed or even that I was staring off into space. I never was on a special diet. I think it also depends on what type of mito you have. I have Melas syndrome --- mitocytopathy mitocytopathy@...> wrote: > Yes I do have problems with Foggy Brain. I was > diagnosed by Dr. > Cohen at the Cleveland Clinic with a mitochondrial > myopathy. He > never mentioned this symtom but I definitely > struggle with it. I am > a veterinarian and I will pause mid-sentence while > speaking with > clients just trying to remember a simple word > sometimes. Very > frustrating! Dr. Cohen put me on a high carb diet, > low fat. Very > difficult since I have celiac disease as well (no > gluten ie; > wheat). It did not help at all. He has since put > me back on my > normal > diet. > > > > > --- > In , " blacklab01129 " > > wrote: > > > > Hi everyone, > > Do any of you have problems with foggy brain? > Its a term my > son > > uses to describe very appropriatley how we feel > alot. My brain > just > > seems to have moments of decreased processing or > something. A > brown > > out if you will. Along with mito or I should say > as part of mito > we > > have problems with ADD Our foggy brain makes us > feel like only a > few > > moments have gone by when really 30 min have > elapsed. It makes > our > > ability to function so challenging. He is 15 and > school is such a > > challenge for him. He is fortunatly very bright > but is having > > trouble keeping up fatigue really impairs his day > but when that is > > compounded by this foggy brain it really put him > at a disadvantage. > > Any thoughts or ideas would be appreciated. > Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and > feel better. > Like > > have any of you tried Protein Power or Atkins and > noticed that you > > feel better just curious > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 My short-term memory loss is greatly improved (from over 100 episodes per day to one or less per day) when I started on Xifaxan and Lactulose for my high blood ammonia. My understanding from my MDA neuro is that mito patients should be tested for blood ammonia, and treated for high levels (near or over 100 on the scale they used for my test) especially if experiencing short-term memory loss and/or labile emotions (angry quickly and for no reason for example). Here is a link about hepatic encephalopathy, which has similar symptoms to nonhepatic encephalopathy, but is due to liver dysfunction (which I don't have): http://www.emedicine.com/med/topic3185.htm Note the symptoms for each stage, although I've never had asterixis (hand flapping), but I've had symptoms up to stage 2 which respond to the pharmacological treatment. Here's a pertinent quote from the above link: " Patients with mild and moderate hepatic encephalopathy demonstrate decreased short-term memory and concentration upon mental status testing. " Lactulose and Xifaxan are both mentioned - one might want to print this out for a doctor if short-term memory loss is a problem... On the down side, lactulose has severe diarrhea related to its main mode of action, and Xifaxan is expensive. But I found that relatively short-term treatment (about a month) got me relatively stable, and now I am on Xifaxan only at a reduced dose. Take care, RH > > > > > > Hi everyone, > > > Do any of you have problems with foggy brain? > > Its a term my > > son > > > uses to describe very appropriatley how we feel > > alot. My brain > > just > > > seems to have moments of decreased processing or > > something. A > > brown > > > out if you will. Along with mito or I should say > > as part of mito > > we > > > have problems with ADD Our foggy brain makes us > > feel like only a > > few > > > moments have gone by when really 30 min have > > elapsed. It makes > > our > > > ability to function so challenging. He is 15 and > > school is such a > > > challenge for him. He is fortunatly very bright > > but is having > > > trouble keeping up fatigue really impairs his day > > but when that is > > > compounded by this foggy brain it really put him > > at a disadvantage. > > > Any thoughts or ideas would be appreciated. > > Thanks and many > > > blessings, Theresa > > > > > > By the way do any of you restrict your carbs and > > feel better. > > Like > > > have any of you tried Protein Power or Atkins and > > noticed that you > > > feel better just curious > > > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 thks Janet I assume you mean in both cases the wrong words were post stroke/sle not precursors to those events? i guess all of us wonder when funny things happen does this mean i am about to have a stroke, or how long before i have one - that sort of thing. on the other hand i suppose if it is just a matter of forgetting words this could be a pre-pre cursor to the dementia aspect some mito sufferers might have. although i have been told by a doctor that anyone can forget words when stressed or have too much on their mind etc. in the cases of your sister and son though there was obviously something amiss. glad to hear your son is ok pamela Re: Re: foggy brain Hi, I have alot of head issues. Foggy is definetly one of them. Especially when like you say you pause to think of that word, or you are talking and a entirely new word comes out, and don't even relate to what you were trying to say. Like,hi how are you sam, and you say Tina, or please pass the keptchup and you might say fork, table, etc. I also can't comprehend anymore, so I don't fill out forms either. Forget fullness is the pits. Mind you I used to run a business. Now I can't even manage my own bills. I find too that I stare into space and don't realize how much time has passed or even that I was staring off into space. I never was on a special diet. I think it also depends on what type of mito you have. I have Melas syndrome --- mitocytopathy mitocytopathy@...> wrote: > Yes I do have problems with Foggy Brain. I was > diagnosed by Dr. > Cohen at the Cleveland Clinic with a mitochondrial > myopathy. He > never mentioned this symtom but I definitely > struggle with it. I am > a veterinarian and I will pause mid-sentence while > speaking with > clients just trying to remember a simple word > sometimes. Very > frustrating! Dr. Cohen put me on a high carb diet, > low fat. Very > difficult since I have celiac disease as well (no > gluten ie; > wheat). It did not help at all. He has since put > me back on my > normal > diet. > > > > > --- > In , " blacklab01129 " > > wrote: > > > > Hi everyone, > > Do any of you have problems with foggy brain? > Its a term my > son > > uses to describe very appropriatley how we feel > alot. My brain > just > > seems to have moments of decreased processing or > something. A > brown > > out if you will. Along with mito or I should say > as part of mito > we > > have problems with ADD Our foggy brain makes us > feel like only a > few > > moments have gone by when really 30 min have > elapsed. It makes > our > > ability to function so challenging. He is 15 and > school is such a > > challenge for him. He is fortunatly very bright > but is having > > trouble keeping up fatigue really impairs his day > but when that is > > compounded by this foggy brain it really put him > at a disadvantage. > > Any thoughts or ideas would be appreciated. > Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and > feel better. > Like > > have any of you tried Protein Power or Atkins and > noticed that you > > feel better just curious > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 I didn't mean to scare you--yes after the stroke is when using the wrong words came up. But I know that I often have the same problem using the wrong words or cannot think of words when I am tired or stressed. One thing when I was going thru the baseline testing in 1997 that I was asked is if I am told I use the wrong words alot. The doc asked that also when I saw him last year to represcribe the carnitor. As you say it has alot to do with dementia I think. Janet Re: Re: foggy brain Hi, I have alot of head issues. Foggy is definetly one of them. Especially when like you say you pause to think of that word, or you are talking and a entirely new word comes out, and don't even relate to what you were trying to say. Like,hi how are you sam, and you say Tina, or please pass the keptchup and you might say fork, table, etc. I also can't comprehend anymore, so I don't fill out forms either. Forget fullness is the pits. Mind you I used to run a business. Now I can't even manage my own bills. I find too that I stare into space and don't realize how much time has passed or even that I was staring off into space. I never was on a special diet. I think it also depends on what type of mito you have. I have Melas syndrome --- mitocytopathy mitocytopathy@...> wrote: > Yes I do have problems with Foggy Brain. I was > diagnosed by Dr. > Cohen at the Cleveland Clinic with a mitochondrial > myopathy. He > never mentioned this symtom but I definitely > struggle with it. I am > a veterinarian and I will pause mid-sentence while > speaking with > clients just trying to remember a simple word > sometimes. Very > frustrating! Dr. Cohen put me on a high carb diet, > low fat. Very > difficult since I have celiac disease as well (no > gluten ie; > wheat). It did not help at all. He has since put > me back on my > normal > diet. > > > > > --- > In , " blacklab01129 " > > wrote: > > > > Hi everyone, > > Do any of you have problems with foggy brain? > Its a term my > son > > uses to describe very appropriatley how we feel > alot. My brain > just > > seems to have moments of decreased processing or > something. A > brown > > out if you will. Along with mito or I should say > as part of mito > we > > have problems with ADD Our foggy brain makes us > feel like only a > few > > moments have gone by when really 30 min have > elapsed. It makes > our > > ability to function so challenging. He is 15 and > school is such a > > challenge for him. He is fortunatly very bright > but is having > > trouble keeping up fatigue really impairs his day > but when that is > > compounded by this foggy brain it really put him > at a disadvantage. > > Any thoughts or ideas would be appreciated. > Thanks and many > > blessings, Theresa > > > > By the way do any of you restrict your carbs and > feel better. > Like > > have any of you tried Protein Power or Atkins and > noticed that you > > feel better just curious > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 Hi, my daughter and I both have Mito, and high ammonia levels. I've been having trouble with " the foggy brain " issues, my daughter not so bad. We were both taking Xifaxan, but it was given to us by our Gastro doc for overgrowth of bacteria in the digestive system. Its an antibiotic that goes directly to the stomach. Could I ask who prescribed this, and did the doc explain how it would help the ammonia levels? I think we were on the Xifaxan when our blood was drawn for the ammonia levels, and they were still high. God Bless, Donna > > > > > > > > Hi everyone, > > > > Do any of you have problems with foggy brain? > > > Its a term my > > > son > > > > uses to describe very appropriatley how we feel > > > alot. My brain > > > just > > > > seems to have moments of decreased processing or > > > something. A > > > brown > > > > out if you will. Along with mito or I should say > > > as part of mito > > > we > > > > have problems with ADD Our foggy brain makes us > > > feel like only a > > > few > > > > moments have gone by when really 30 min have > > > elapsed. It makes > > > our > > > > ability to function so challenging. He is 15 and > > > school is such a > > > > challenge for him. He is fortunatly very bright > > > but is having > > > > trouble keeping up fatigue really impairs his day > > > but when that is > > > > compounded by this foggy brain it really put him > > > at a disadvantage. > > > > Any thoughts or ideas would be appreciated. > > > Thanks and many > > > > blessings, Theresa > > > > > > > > By the way do any of you restrict your carbs and > > > feel better. > > > Like > > > > have any of you tried Protein Power or Atkins and > > > noticed that you > > > > feel better just curious > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 You might need more Xifaxan, I was up to 4 tablets per day (don't know your doses of course, but as a comparison). Also I was on lactulose (Kristalose that can be dissolved in anything and has no taste). The lactulose REALLY seemed to help, and I was on both for over a month. Actually, the Xifaxan goes directly to the intestines, not the stomach per se - the goal is to destroy ammonia-producing bacteria in the intestines. It is not absorbed systemically, which means the potential for side effects is minimal. If you check out eMedicine for " hepatic encephalopathy " (link is below in my other email), it explains a bit about Xifaxan and other treatments. Uncontrolled high levels of ammonia in the blood are VERY serious, and can result in death - DO NOT take them lightly IMHO. I suggest going to a gastroenterologist, who can evaluate your ammonia levels and treat you for them thoroughly. My MDA neuro referred me to a GI doctor for treatment of my high ammonia levles. If you can coordinate your mito doc and your GI doctor, that might be best. As a side note, Dr. G at NEMC said that ammonia levels can be greatly affected by meals, so she is recommending I get levels tested fasting, after breakfast, and after lunch. A high protein diet can make ammonia levels worse, but a high protein diet seems to help my mito symptoms, so I stay on the Xifaxan to keep the ammonia levels down. There are many clinical studies on Xifaxan versus lactulose for reduction of high ammonia levels, most noted in hepatology (liver) journals. My GI doctor is a liver specialist, so he was up on the literature and I was prescribed Xifaxan soon after it was out. I have not heard of treatments other than Xifaxan and lactulose for high ammonia levels, and also ammonia levels fluctuate, so some might have high levels when experiencing dementia symptoms, but not at other times. Take care, RH > > > > > > > > > > Hi everyone, > > > > > Do any of you have problems with foggy brain? > > > > Its a term my > > > > son > > > > > uses to describe very appropriatley how we feel > > > > alot. My brain > > > > just > > > > > seems to have moments of decreased processing or > > > > something. A > > > > brown > > > > > out if you will. Along with mito or I should say > > > > as part of mito > > > > we > > > > > have problems with ADD Our foggy brain makes us > > > > feel like only a > > > > few > > > > > moments have gone by when really 30 min have > > > > elapsed. It makes > > > > our > > > > > ability to function so challenging. He is 15 and > > > > school is such a > > > > > challenge for him. He is fortunatly very bright > > > > but is having > > > > > trouble keeping up fatigue really impairs his day > > > > but when that is > > > > > compounded by this foggy brain it really put him > > > > at a disadvantage. > > > > > Any thoughts or ideas would be appreciated. > > > > Thanks and many > > > > > blessings, Theresa > > > > > > > > > > By the way do any of you restrict your carbs and > > > > feel better. > > > > Like > > > > > have any of you tried Protein Power or Atkins and > > > > noticed that you > > > > > feel better just curious > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 I forgot to mention that of course this is all my own experience, and I'm not a medical doctor. But I'm sure you guys can imagine the difference between dementia on a daily basis and being able to hold down a full-time job, so I get a bit enthusiastic about my treatment plan - YMMV. Take care, RH > > > > > > > > > > > > Hi everyone, > > > > > > Do any of you have problems with foggy brain? > > > > > Its a term my > > > > > son > > > > > > uses to describe very appropriatley how we feel > > > > > alot. My brain > > > > > just > > > > > > seems to have moments of decreased processing or > > > > > something. A > > > > > brown > > > > > > out if you will. Along with mito or I should say > > > > > as part of mito > > > > > we > > > > > > have problems with ADD Our foggy brain makes us > > > > > feel like only a > > > > > few > > > > > > moments have gone by when really 30 min have > > > > > elapsed. It makes > > > > > our > > > > > > ability to function so challenging. He is 15 and > > > > > school is such a > > > > > > challenge for him. He is fortunatly very bright > > > > > but is having > > > > > > trouble keeping up fatigue really impairs his day > > > > > but when that is > > > > > > compounded by this foggy brain it really put him > > > > > at a disadvantage. > > > > > > Any thoughts or ideas would be appreciated. > > > > > Thanks and many > > > > > > blessings, Theresa > > > > > > > > > > > > By the way do any of you restrict your carbs and > > > > > feel better. > > > > > Like > > > > > > have any of you tried Protein Power or Atkins and > > > > > noticed that you > > > > > > feel better just curious > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
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