Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Hi Angie, Thanks for your response and welcome to the group. :-) I actually feel like a newcomer myself. I have received the list since last October, but I had a very bad winter and there were months when I couldn't touch the computer. I am sorry to hear that you also have this mito condition but glad for you that at least you were able to get it diagnosed. About the eye twitches, I suspect that any over use of the eyes could trigger one of these episodes if you are prone to them, not just computer use. This recent episode was not due to overuse, but from being outdoors and sweating. I suspect that I may have sweated out an essential mineral and caused a deficiency of that mineral and therefore the symptom. Of course, it is probably not that simple. BTW, I just want to clarify, I was not out all day. I wish that were the case! [g] I was out a little longer than usual on a hotter than normal day. I want to clarify so everyone can understand how little it takes to cause a problem sometimes. I actually had been able to go outdoors maybe every other day on average, during April and May with no problem. I would go out for about 30 minutes at a time and come in and rest and maybe do that 2 more times through out the day. I had even sat in the sun and read a few times with no problem. Since I have never had airborne allergies and had no problems all of April and May, to have had one day of symptoms due to allergies seems an unreasonable conclusion. So I think I can safely rule that out. My success at being able to be outdoors and making progress with my level of activity that I could tolerate made me a little less cautious than I should have been, and one day I stayed out longer than 30 minutes and did a little deadheading and it was really hot and I had forgotten to get out early in the day and I noticed I was very sweaty, which is not usual for me. I was wearing a hat. I went in the house at that time, but the damage was done. In thinking back, I felt a moment of light headedness in the yard, but it was very mild and again, this is unusual for me. I didn't notice it again. I stayed quiet the rest of the day, but had trouble sleeping that night. This is always a signal to me that I have overdone it. I had just gotten to the point of being able to count on at least 5 nights a week of 6 hours of sleep a night. The next day my eye was twitching and the headaches started and temperature regulation problems. One minute hot, take off a sweater, ten minutes later, cold, put it back on...etc. The eye twitch was more like rapid eye movement and was uncontrolable and sporadic but pretty constant. Was made worse, by trying to use my eye at all, was only on the right side and was accompanied by facial sensitivity, all around my eyes and forehead and pain going into my teeth. This was worse than the first time I had an eye twitch which was mild and not accompanied by the other symptoms, but in the previous time I had peripheral nerve ending pain in my hands and feet. The last time I had it, I looked up in a holistic medicine book what to do for it, and magnesium for twitches was recommended. I had been using green drinks for magnesium but it wasn't enough, so I started eating every food I knew had magnesium in it. Nuts and seeds mostly. Within 4 hours the twitch stopped and three weeks later, after daily nuts and seeds, so was the peripheral feet and hand pain which had dogged me for 6 months. This time I am not able to really eat the nuts and seeds, but I am trying the green drinks and a very small amount of peanut butter. It took much longer to get rid of the twitch, but some of the rest of it are still problems and the headaches are a killer. BTW, I don't usually take aspirin or tylenol unless I am dying, because it can upset my stomach if I take it for too long. I wondered if anyone here takes it routinely for pain or headaches and if it is actually helpful for resolving the symptoms or just for pain relief. Also, I am not recommending the nuts and seed/green drinks for anyone here on the list, as I know some of you are on very specfic diets, and would have to check with their docs whether it was alright for you to try what I did. I know I may have missed responding to a post or two, sorry about that. Someone mentioned medications as the culprit. I am not on any medication but Synthroid. I am taking Carnitine and QGel and digestive aides but that is it. I have looked up dehydration, heat exhaustion and heat stroke. Since the heat seemed to have such a strong reaction for me, I thought it might help remind others on the list of what the signs are so I include them below. I am confused about it. For in looking over the list, I was not thristy. I rarely feel thirsty actually. I did not have dry lips. I didn't look at my eyes. I didn't test my skin. I did not notice my pulse being particularly fast or weak. I didn't have cold hands or feet. I was breathing heavy, but I had been outside moving around and maybe watering plants. my lips weren't blue and I wasn't confused. As far as heat exhaustion, I did have heavy sweating, didn't notice if I was pale, no muscle cramps, yes tired, but expected, not weak, a few moments of lightheadedness, but not dizzy, headache, don't remember when it started, no nausea and no fainting. As for heat stroke...I didn't take my temp [i will next time], I didn't notice my pulse, and now I am not sure if my head was throbbing when I came in that day or not. I had no dizziness, nausea confusion or unconciousness. At any rate, if I had this classic definition of heat exhaustion or stroke, I still would think it would have cleared up by now. That is why it seems more reasonable to assume that the heat may have been the original problem that got the ball rolling, but I am probably dealing with some sort of imbalance that was caused by that and is not clearing up quickly. I would assume that once a mito body gets out of balance, it is pretty hard to get it back in balance. Especially since you don't know what exactly is out of balance. I was debating whether to bother checking with the doctor or asking for blood work to see if there is anything showing up low, but my other option is to just hunker down and get more serious about doing all that I already know to do to get on the other side of this. From many years ..since 1980 actually...I have had so many experiences of doctors visits being of no use in these situations that I am more inclined to just do what I can for myself. Of course, that was before I knew about mito, so I am trying to figure out if mito docs can actually do anything to help you with symptoms besides a diagnosis and carnitine/qgel. I asked my mito doc last week, whether it would be of any value to call him when I get into problems, and he said well, if you lose movement on one side of your body that indicates a stroke, call me. LOL Well, yeah, I would hope you would want me to call you if that happened. So what I conclude from that is that they haven't been able to figure out what is wrong or how to help in most cases. I was hoping I might be able to figure out how to slow down the progression and fix some of the more obvious problems with supplementing. At any rate, I am going to be spending a lot more time indoors this summer. As a matter of fact, I remember just about living in the air conditioning last summer and not having an episode like this. I have had the air conditioning going non stop all week. Despite cooler nights here, it is still humid. Well, so much for not typing too much today. :-) Sorry if I have given you too much to read. I do actually write short posts sometimes. [g] Angie, I live in New England another beautiful part of the country. Tennessee is also gorgeous. I have been through the Blue Ridge Mountains and it is beautiful there. Glad you have joined us and look forward to hearing more from you. Thanks for writing. I will be going offline for a few days. :-)Adam Signs of Dehydration Mild Thirst Dry lips Slightly dry mouth membranes Moderate Very dry mouth membranes Sunken eyes Sunken fontanelle (soft spot) on infant's head. Skin doesn't bounce back quickly when lightly pinched and released. Severe All signs of moderate dehydration Rapid, weak pulse (more than 100 at rest). Cold hands and feet Rapid breathing Blue lips Confusion, lethargy, difficult to arouse ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Warning signs of heat exhaustion include the following: Heavy sweating Paleness Muscle cramps Tiredness Weakness Dizziness Headache Nausea or vomiting Fainting ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Warning signs of heat stroke vary but may include the following: An extremely high body temperature (above 103°F, orally) Red, hot, and dry skin (no sweating) Rapid, strong pulse Throbbing headache Dizziness Nausea Confusion Unconsciousness > Adam, > My name is Angie. I have just recently found this site. I am sorry to hear about your struggles. I know it is hard to deal with everything already and then to have a relentless headache, well that's enought to drive you crazy. I found some of the symptoms you describe to be similar to things that I experience. First, I was interested to hear you talk about " eye twitches " . When I was still working (2 years ago), I was a loan processor. I did a lot of computer work and paperwork. To give you a little background, I am 40 years old and I was diagnosed with mitochondrial myopathy (complex I with a fatty acid disorder) about 2 months ago. " ....I developed an eye twitch that would not go away. Doctors kept telling me it was nothing. This is the first time I have associated it with the mito disease. Thanks for sharing that yours came with computer work and such. That gives me one more warning sign that I had. > Secondly, I also have a problem with waking up throughout the night. My face and teeth are sore and I do get headaches. My doctors seem to think that I " clench " my teeth while I am sleeping. They think it is because of the pain that my back causes or that the mito causes. I wonder if it is the pain or if it is just another strange symptom of this disease. The dentist made me a " bite gaurd " . When I wear it, it does seem to help. > > Lastly, I have alot of allergies. The first thing I thought of when you said your headaches started after spending all day outside was not the heat but sinus trouble from some allergen that you could have been around. You may not even know that you have allergies, but it may be something to consider and look into. > > I can't remember if you said how old you are and where you are from. I Live in Tennessee and we don't have a support group here. That's why I'm glad I found this site. I hope this gave you something to consider. I look forward to hearing from you. > > God bless you, > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Angie and Adam Eye twitches are part of the neuropathy package. Any muscle in the body can twitch from unwanted stimulation of the nerves. I never get them from too much eye use, but it seems for no reason at all like all my other itches, stabbing pain, water running down the leg and biting bugs that I feel but aren't happening. laurie > > Reply-To: > Date: Tue, 06 Jul 2004 15:25:20 -0000 > To: > Subject: Head problems due to sun...what is causing it? Long post > > Hi Angie, > > Thanks for your response and welcome to the group. :-) I actually > feel like a newcomer myself. I have received the list since last > October, but I had a very bad winter and there were months when I > couldn't touch the computer. I am sorry to hear that you also have > this mito condition but glad for you that at least you were able to > get it diagnosed. > > About the eye twitches, I suspect that any over use of the eyes could > trigger one of these episodes if you are prone to them, not just > computer use. This recent episode was not due to overuse, but from > being outdoors and sweating. I suspect that I may have sweated out > an essential mineral and caused a deficiency of that mineral and > therefore the symptom. Of course, it is probably not that simple. > > BTW, I just want to clarify, I was not out all day. I wish that were > the case! [g] I was out a little longer than usual on a hotter than > normal day. I want to clarify so everyone can understand how little > it takes to cause a problem sometimes. > > I actually had been able to go outdoors maybe every other day on > average, during April and May with no problem. I would go out for > about 30 minutes at a time and come in and rest and maybe do that 2 > more times through out the day. I had even sat in the sun and read a > few times with no problem. Since I have never had airborne allergies > and had no problems all of April and May, to have had one day of > symptoms due to allergies seems an unreasonable conclusion. So I > think I can safely rule that out. > > My success at being able to be outdoors and making progress with my > level of activity that I could tolerate made me a little less > cautious than I should have been, and one day I stayed out longer > than 30 minutes and did a little deadheading and it was really hot > and I had forgotten to get out early in the day and I noticed I was > very sweaty, which is not usual for me. I was wearing a hat. I went > in the house at that time, but the damage was done. In thinking > back, I felt a moment of light headedness in the yard, but it was > very mild and again, this is unusual for me. I didn't notice it again. > > I stayed quiet the rest of the day, but had trouble sleeping that > night. This is always a signal to me that I have overdone it. I had > just gotten to the point of being able to count on at least 5 nights > a week of 6 hours of sleep a night. The next day my eye was > twitching and the headaches started and temperature regulation > problems. One minute hot, take off a sweater, ten minutes later, > cold, put it back on...etc. The eye twitch was more like rapid eye > movement and was uncontrolable and sporadic but pretty constant. Was > made worse, by trying to use my eye at all, was only on the right > side and was accompanied by facial sensitivity, all around my eyes > and forehead and pain going into my teeth. This was worse than the > first time I had an eye twitch which was mild and not accompanied by > the other symptoms, but in the previous time I had peripheral nerve > ending pain in my hands and feet. > > The last time I had it, I looked up in a holistic medicine book what > to do for it, and magnesium for twitches was recommended. I had been > using green drinks for magnesium but it wasn't enough, so I started > eating every food I knew had magnesium in it. Nuts and seeds > mostly. Within 4 hours the twitch stopped and three weeks later, > after daily nuts and seeds, so was the peripheral feet and hand pain > which had dogged me for 6 months. This time I am not able to really > eat the nuts and seeds, but I am trying the green drinks and a very > small amount of peanut butter. It took much longer to get rid of the > twitch, but some of the rest of it are still problems and the > headaches are a killer. > > BTW, I don't usually take aspirin or tylenol unless I am dying, > because it can upset my stomach if I take it for too long. I > wondered if anyone here takes it routinely for pain or headaches and > if it is actually helpful for resolving the symptoms or just for pain > relief. Also, I am not recommending the nuts and seed/green drinks > for anyone here on the list, as I know some of you are on very > specfic diets, and would have to check with their docs whether it was > alright for you to try what I did. > > I know I may have missed responding to a post or two, sorry about > that. Someone mentioned medications as the culprit. I am not on any > medication but Synthroid. I am taking Carnitine and QGel and > digestive aides but that is it. I have looked up dehydration, heat > exhaustion and heat stroke. Since the heat seemed to have such a > strong reaction for me, I thought it might help remind others on the > list of what the signs are so I include them below. > > I am confused about it. For in looking over the list, I was not > thristy. I rarely feel thirsty actually. I did not have dry lips. > I didn't look at my eyes. I didn't test my skin. I did not notice > my pulse being particularly fast or weak. I didn't have cold hands > or feet. I was breathing heavy, but I had been outside moving around > and maybe watering plants. my lips weren't blue and I wasn't > confused. As far as heat exhaustion, I did have heavy sweating, > didn't notice if I was pale, no muscle cramps, yes tired, but > expected, not weak, a few moments of lightheadedness, but not dizzy, > headache, don't remember when it started, no nausea and no fainting. > As for heat stroke...I didn't take my temp [i will next time], I > didn't notice my pulse, and now I am not sure if my head was > throbbing when I came in that day or not. I had no dizziness, nausea > confusion or unconciousness. > > At any rate, if I had this classic definition of heat exhaustion or > stroke, I still would think it would have cleared up by now. That is > why it seems more reasonable to assume that the heat may have been > the original problem that got the ball rolling, but I am probably > dealing with some sort of imbalance that was caused by that and is > not clearing up quickly. I would assume that once a mito body gets > out of balance, it is pretty hard to get it back in balance. > Especially since you don't know what exactly is out of balance. > > I was debating whether to bother checking with the doctor or asking > for blood work to see if there is anything showing up low, but my > other option is to just hunker down and get more serious about doing > all that I already know to do to get on the other side of this. From > many years ..since 1980 actually...I have had so many experiences of > doctors visits being of no use in these situations that I am more > inclined to just do what I can for myself. > > Of course, that was before I knew about mito, so I am trying to > figure out if mito docs can actually do anything to help you with > symptoms besides a diagnosis and carnitine/qgel. I asked my mito doc > last week, whether it would be of any value to call him when I get > into problems, and he said well, if you lose movement on one side of > your body that indicates a stroke, call me. LOL Well, yeah, I would > hope you would want me to call you if that happened. So what I > conclude from that is that they haven't been able to figure out what > is wrong or how to help in most cases. I was hoping I might be able > to figure out how to slow down the progression and fix some of the > more obvious problems with supplementing. > > At any rate, I am going to be spending a lot more time indoors this > summer. As a matter of fact, I remember just about living in the air > conditioning last summer and not having an episode like this. I have > had the air conditioning going non stop all week. Despite cooler > nights here, it is still humid. > > Well, so much for not typing too much today. :-) Sorry if I have > given you too much to read. I do actually write short posts > sometimes. [g] Angie, I live in New England another beautiful part > of the country. Tennessee is also gorgeous. I have been through the > Blue Ridge Mountains and it is beautiful there. Glad you have joined > us and look forward to hearing more from you. Thanks for writing. I > will be going offline for a few days. > > :-)Adam > > > Signs of Dehydration > Mild > Thirst > Dry lips > Slightly dry mouth membranes > Moderate > Very dry mouth membranes > Sunken eyes > Sunken fontanelle (soft spot) on infant's head. > Skin doesn't bounce back quickly when lightly pinched and > released. > Severe > All signs of moderate dehydration > Rapid, weak pulse (more than 100 at rest). > Cold hands and feet > Rapid breathing > Blue lips > Confusion, lethargy, difficult to arouse > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > Warning signs of heat exhaustion include the following: > Heavy sweating > Paleness > Muscle cramps > Tiredness > Weakness > Dizziness > Headache > Nausea or vomiting > Fainting > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > Warning signs of heat stroke vary but may include the following: > An extremely high body temperature (above 103°F, orally) > Red, hot, and dry skin (no sweating) > Rapid, strong pulse > Throbbing headache > Dizziness > Nausea > Confusion > Unconsciousness > > > > > > >> Adam, >> My name is Angie. I have just recently found this site. I am sorry > to hear about your struggles. I know it is hard to deal with > everything already and then to have a relentless headache, well > that's enought to drive you crazy. I found some of the symptoms you > describe to be similar to things that I experience. First, I was > interested to hear you talk about " eye twitches " . When I was still > working (2 years ago), I was a loan processor. I did a lot of > computer work and paperwork. To give you a little background, I am 40 > years old and I was diagnosed with mitochondrial myopathy (complex I > with a fatty acid disorder) about 2 months ago. > > " ....I developed an eye twitch that would not go away. Doctors kept > telling me it was nothing. This is the first time I have associated > it with the mito disease. Thanks for sharing that yours came with > computer work and such. That gives me one more warning sign that I > had. > >> Secondly, I also have a problem with waking up throughout the > night. My face and teeth are sore and I do get headaches. My doctors > seem to think that I " clench " my teeth while I am sleeping. They > think it is because of the pain that my back causes or that the mito > causes. I wonder if it is the pain or if it is just another strange > symptom of this disease. The dentist made me a " bite gaurd " . When I > wear it, it does seem to help. >> >> Lastly, I have alot of allergies. The first thing I thought of when > you said your headaches started after spending all day outside was > not the heat but sinus trouble from some allergen that you could have > been around. You may not even know that you have allergies, but it > may be something to consider and look into. >> >> I can't remember if you said how old you are and where you are > from. I Live in Tennessee and we don't have a support group here. > That's why I'm glad I found this site. I hope this gave you something > to consider. I look forward to hearing from you. >> >> God bless you, >> Angie >> > > > > 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 6, 2004 Report Share Posted July 6, 2004 Aspirin and tylenol aren't recommended for pain since they cause more mito damage. Ibuprofen is what my mito doc recommends if needed on occasion. >BTW, I don't usually take aspirin or tylenol unless I am dying, >because it can upset my stomach if I take it for too long. I >wondered if anyone here takes it routinely for pain or headaches and >if it is actually helpful for resolving the symptoms or just for pain >relief. Also, I am not recommending the nuts and seed/green drinks >for anyone here on the list, as I know some of you are on very >specfic diets, and would have to check with their docs whether it was >alright for you to try what I did. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 -Hi Adam, i don't want to interfere with your diet or anything, but usually nuts and seeds are bad for gastroparesis. I love them myself and feel they are healthy so I guess it's a toos up what to do... Celia-- In , wrote: > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.