Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 My son and I read the post about the 17 year old girl~ describes my son pretty accurately. He shows signs of heat exhaustion every time he rides in our non-airconditioned van. 's informal 'tilt table test' was done by the pediatric cardiologist and got intterupted by the nurse before the necessary resting time was up. Even knew the results were messed up. He suffered a lot of discomfort during it too--and they say nothing's wrong. When walking up the three flights of stairs to our apartment our hearts pound hard and we feel this excruciating explosive feeling in our head and chest. Thank God we are moving soon. I am on a salt restricted for Meniere's Disease~ after craving salt and giving in to eating potato chips and drinking gatorade, it made me feel better. Now I don't have the same kind of dizziness anymore if I keep things at a balance. I'm not a doctor, IMHO, Excessive adrenalin output would drain a person of some essential vitamins, minerals, electrolytes, etc. If these nutrients are deficient in the first place and/or aren't replaced, the body suffers. With the vascular type of EDS, the blood vessels are affected and can't function properly--makes sense that one would feel crummy if the electrolytes were unbalanced to some degree. It's different for each person as EDS affects us differently and our nutritional status isn't the same for all. I haven't searched this yet, but is there any special kind of diet recommended for EDS in general? ~Duv () > > Hi Stacey: > > Do you know that when your heart rate is at 120, your body is > usually > > pumping out a lot of extra adrenalin to make the heart beat that > fast. > > Adrenalin can make one feel extremely anxious. Perhaps that is why > you > > feel so very anxious and feel the need for alcohol. Often, people > use > > alcohol to relax and let their hair down. Perhaps your summer job > is > > putting a great deal more physical demand on your body and requiring > > physical stamina that was not required during the university term. > > > > My 17 yr. old daughter developed severe orthostatic intolerance and > Pots > > when she took a required aerobics gym class at high school. She > started > > to have fainting episodes in Dec. after the gym class, although she > she > > had started the class in Sept. and it was the increased demand that > > occurred during endurance training aspect of it. When I learned > that > > increasing the salt intake and drinking at least 2 litres of water > per > > day helped her B.P and lowered her heart rate she started to feel > like > > she had a bit of control. She also is extremely sensitive to > becoming > > overheated and going out on a hot day is a guarantee of having > > orthostatic intolerance. Alcohol is a vasodilator and diuretic so > it is > > very, very unhelpful. Initially it works as a stimulant for > approx. an > > hour and one feels relaxed, but then the other effects take over > and one > > can feel worse. I know how terribly anxious you can feel with the > 120 > > heart rate. My daughter can still get anxiety attacks when her > heart > > rate gets high. She gets the fastest result at reducing anxiety by > > laying down and putting her feet up at 90 degrees on a wall. She > also > > drinks gatorate at this time to increase circulating fluid and > increase > > salt and potassium in her body. > > She went to the bathroom a whole lot more, but she had less feeling > of > > severe exhaustion and she had to reduce her physical activity. When > > sitting, she always, always has her feet on coffee table or up on > > something. > > This is what works for her and she still has to follow these > principles. > > July and August are tough months for her because of the heat. > > Bernie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 : What is IMHO? Yes, my daughter also suffers discomfort during a poor man's tilt table test. This is the same discomfort she experiences daily when standing or sitting too long, though outside the doctors test she is free to make accommodations, (walk around, sit down, or lay down with feet elevated high) and does not have to endure PROLONGED symptoms. It certainly is abnormal and numerous doctors would not admit it to me either, liars! ! My bitterness at their dishonesty is showing. Do you know of research verifying loss of minerals, nutrients and electrolytes with prolonged or excessive adrenalin production? It makes sense. My experience from giving adrenalin in a medical situation is that the first major response is intense anxiety, then pounding heart rate follow by very, very noticeable paleness and then the patient takes noticeably deeper slower breaths. This occurs very, very quickly, within a minute, at most two. It is quite an amazing and almost frightening drug to give because of the severe anxiety the person displays initially. After the first experience of giving it, I would double and triple verify with another that I had drawn up the correct dosage and if I had the least question of the dose ordered I would verify that with the doctor or nsg. supervisor as well....interesting that I never got over my caution in administering this drug because the response is so immediate and so intense..... used mostly for asthmatics and children with severe croup episode. My car is very old and air conditioning no longer works. Elevating the feet on the dash and taking in extra fluids seems to help my daughter cope, plus she gets very sleepy and extremely irritable....can't think clearly to answer me and will tell me so clearly. I bet my eye teeth your son is similar. Bernie Re: Adrenaline/POTS My son and I read the post about the 17 year old girl~ describes my son pretty accurately. He shows signs of heat exhaustion every time he rides in our non-airconditioned van. 's informal 'tilt table test' was done by the pediatric cardiologist and got intterupted by the nurse before the necessary resting time was up. Even knew the results were messed up. He suffered a lot of discomfort during it too--and they say nothing's wrong. When walking up the three flights of stairs to our apartment our hearts pound hard and we feel this excruciating explosive feeling in our head and chest. Thank God we are moving soon. I am on a salt restricted for Meniere's Disease~ after craving salt and giving in to eating potato chips and drinking gatorade, it made me feel better. Now I don't have the same kind of dizziness anymore if I keep things at a balance. I'm not a doctor, IMHO, Excessive adrenalin output would drain a person of some essential vitamins, minerals, electrolytes, etc. If these nutrients are deficient in the first place and/or aren't replaced, the body suffers. With the vascular type of EDS, the blood vessels are affected and can't function properly--makes sense that one would feel crummy if the electrolytes were unbalanced to some degree. It's different for each person as EDS affects us differently and our nutritional status isn't the same for all. I haven't searched this yet, but is there any special kind of diet recommended for EDS in general? ~Duv () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 : What is IMHO? Yes, my daughter also suffers discomfort during a poor man's tilt table test. This is the same discomfort she experiences daily when standing or sitting too long, though outside the doctors test she is free to make accommodations, (walk around, sit down, or lay down with feet elevated high) and does not have to endure PROLONGED symptoms. It certainly is abnormal and numerous doctors would not admit it to me either, liars! ! My bitterness at their dishonesty is showing. Do you know of research verifying loss of minerals, nutrients and electrolytes with prolonged or excessive adrenalin production? It makes sense. My experience from giving adrenalin in a medical situation is that the first major response is intense anxiety, then pounding heart rate follow by very, very noticeable paleness and then the patient takes noticeably deeper slower breaths. This occurs very, very quickly, within a minute, at most two. It is quite an amazing and almost frightening drug to give because of the severe anxiety the person displays initially. After the first experience of giving it, I would double and triple verify with another that I had drawn up the correct dosage and if I had the least question of the dose ordered I would verify that with the doctor or nsg. supervisor as well....interesting that I never got over my caution in administering this drug because the response is so immediate and so intense..... used mostly for asthmatics and children with severe croup episode. My car is very old and air conditioning no longer works. Elevating the feet on the dash and taking in extra fluids seems to help my daughter cope, plus she gets very sleepy and extremely irritable....can't think clearly to answer me and will tell me so clearly. I bet my eye teeth your son is similar. Bernie Re: Adrenaline/POTS My son and I read the post about the 17 year old girl~ describes my son pretty accurately. He shows signs of heat exhaustion every time he rides in our non-airconditioned van. 's informal 'tilt table test' was done by the pediatric cardiologist and got intterupted by the nurse before the necessary resting time was up. Even knew the results were messed up. He suffered a lot of discomfort during it too--and they say nothing's wrong. When walking up the three flights of stairs to our apartment our hearts pound hard and we feel this excruciating explosive feeling in our head and chest. Thank God we are moving soon. I am on a salt restricted for Meniere's Disease~ after craving salt and giving in to eating potato chips and drinking gatorade, it made me feel better. Now I don't have the same kind of dizziness anymore if I keep things at a balance. I'm not a doctor, IMHO, Excessive adrenalin output would drain a person of some essential vitamins, minerals, electrolytes, etc. If these nutrients are deficient in the first place and/or aren't replaced, the body suffers. With the vascular type of EDS, the blood vessels are affected and can't function properly--makes sense that one would feel crummy if the electrolytes were unbalanced to some degree. It's different for each person as EDS affects us differently and our nutritional status isn't the same for all. I haven't searched this yet, but is there any special kind of diet recommended for EDS in general? ~Duv () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 > What is IMHO? " In my humble opinion " If you need definitions for other acronyms used on this list, you may check for them at our acronym database http://health.groups.yahoo.com/group/ceda/database -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 > What is IMHO? " In my humble opinion " If you need definitions for other acronyms used on this list, you may check for them at our acronym database http://health.groups.yahoo.com/group/ceda/database -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 : My daughter also experiences shortness of breath, lightheadedness, tightness in her chest, and can't think after walking up long flight of stairs at school, particularly if carrying a heavy school back pack, but has been able to obtain an elevator key and use of an elevator. The inability to think for 30 min. or more afterwards causes the greatest difficulty. Interesting that putting up with the discomfort of SOB is easier to cope with than the not being able to think straight. These kids endure far more severe discomfort than the doctors are willing to acknowledge as they will not investigate the SOB. Bernie Re: Adrenaline/POTS My son and I read the post about the 17 year old girl~ describes my son pretty accurately. He shows signs of heat exhaustion every time he rides in our non-airconditioned van. 's informal 'tilt table test' was done by the pediatric cardiologist and got intterupted by the nurse before the necessary resting time was up. Even knew the results were messed up. He suffered a lot of discomfort during it too--and they say nothing's wrong. When walking up the three flights of stairs to our apartment our hearts pound hard and we feel this excruciating explosive feeling in our head and chest. Thank God we are moving soon. I am on a salt restricted for Meniere's Disease~ after craving salt and giving in to eating potato chips and drinking gatorade, it made me feel better. Now I don't have the same kind of dizziness anymore if I keep things at a balance. I'm not a doctor, IMHO, Excessive adrenalin output would drain a person of some essential vitamins, minerals, electrolytes, etc. If these nutrients are deficient in the first place and/or aren't replaced, the body suffers. With the vascular type of EDS, the blood vessels are affected and can't function properly--makes sense that one would feel crummy if the electrolytes were unbalanced to some degree. It's different for each person as EDS affects us differently and our nutritional status isn't the same for all. I haven't searched this yet, but is there any special kind of diet recommended for EDS in general? ~Duv () > > Hi Stacey: > > Do you know that when your heart rate is at 120, your body is > usually > > pumping out a lot of extra adrenalin to make the heart beat that > fast. > > Adrenalin can make one feel extremely anxious. Perhaps that is why > you > > feel so very anxious and feel the need for alcohol. Often, people > use > > alcohol to relax and let their hair down. Perhaps your summer job > is > > putting a great deal more physical demand on your body and requiring > > physical stamina that was not required during the university term. > > > > My 17 yr. old daughter developed severe orthostatic intolerance and > Pots > > when she took a required aerobics gym class at high school. She > started > > to have fainting episodes in Dec. after the gym class, although she > she > > had started the class in Sept. and it was the increased demand that > > occurred during endurance training aspect of it. When I learned > that > > increasing the salt intake and drinking at least 2 litres of water > per > > day helped her B.P and lowered her heart rate she started to feel > like > > she had a bit of control. She also is extremely sensitive to > becoming > > overheated and going out on a hot day is a guarantee of having > > orthostatic intolerance. Alcohol is a vasodilator and diuretic so > it is > > very, very unhelpful. Initially it works as a stimulant for > approx. an > > hour and one feels relaxed, but then the other effects take over > and one > > can feel worse. I know how terribly anxious you can feel with the > 120 > > heart rate. My daughter can still get anxiety attacks when her > heart > > rate gets high. She gets the fastest result at reducing anxiety by > > laying down and putting her feet up at 90 degrees on a wall. She > also > > drinks gatorate at this time to increase circulating fluid and > increase > > salt and potassium in her body. > > She went to the bathroom a whole lot more, but she had less feeling > of > > severe exhaustion and she had to reduce her physical activity. When > > sitting, she always, always has her feet on coffee table or up on > > something. > > This is what works for her and she still has to follow these > principles. > > July and August are tough months for her because of the heat. > > Bernie > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Thanks Barb..........Bernie Re: Re: Adrenaline/POTS > What is IMHO? " In my humble opinion " If you need definitions for other acronyms used on this list, you may check for them at our acronym database http://health.groups.yahoo.com/group/ceda/database -Barb To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Thanks Barb..........Bernie Re: Re: Adrenaline/POTS > What is IMHO? " In my humble opinion " If you need definitions for other acronyms used on this list, you may check for them at our acronym database http://health.groups.yahoo.com/group/ceda/database -Barb To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Bernadette, So very sorry I couldn't respond right away...If I seem to dissappear after I post--it's most likely that I am sick. I have been sick with a mysterious bacterial infection that has me with swollen glands, the chills, and dizziness about every other day and have been sleeping on and off for a couple of weeks like a newborn baby. Had this about a total of 10 weeks in all so far. Had to wait for my regular doc's appt. for about a week and a half, but went to the urgent care a few days ago- they thought I had Mono. They still don't know what it is but my doc gave me Cipro 500mg 2 x's a day for 2 weeks. I sometimes can read here for a while but fall asleep before I get around to posting. There's so much I want to reply to. Nights are when I am awake the longest. Now, about the POTS~ yes, I agree that our kids seem to have the same problem with that. , when he was younger, had high pulse rates that came on all of a sudden and left as fast as they came for no apparent reason. Since he's now at a lower level of activity he doesn't seem to have them anymore. I always hated it when he put his feet on the dash when I drive, but if it makes him feel better on these hot days I will let him. Gatorade is now going to replace lemonaid for the rest of the summer at least. It's nice to know we are not alone...I'm reading about so many similarities in articles about both my kids. That one article about the 13 y/o girl the size of a 10 y/o got my attention because that's just how my 13 y/o daughter is. Reading here is helping me cope better with the EDS aspect of our lives. I am here in spirit even if I can't post! Blessings, ~Duv () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Hi : Re: Putting the feet on the dash.....my daughter broke the glove compartment lock from having her feet there so often and needing to press on the dash to utilize the muscle pump in her legs. Now I can't get at the automatic trunk opener inside the glove compartment but I just live with it. Did you know that jiggling your feet and legs lots before getting out of bed in the morning helps reduce the severity of that awful morning dizziness my kid had. Before medication, she would walk to the bathroom doubled over at the waist to reduce the severity of dizziness. Also, I have been told that 2 cups of water will raise the blood pressure 10 mm. of mercury for 1 hour so if one can drink before getting out of bed it helps, and drinking extra fluids at bedtime. When my daughter has engaged in too much physical activity her first symptoms will be a raw, sore throat, really bad breath and a huge amt of extra sleeping. If she has bad breath, I know immediately that she needs greater down time. If you are falling asleep at the computer while reading, sounds like you need to get a lot more rest, though I do know of others in our community who have had a summer virus with temps of 101....non HEDS people. A bath in Epsom salts really, really sooths my daughter and I buy Epsom salts by the 4 kilo container at Cosco.....that's how much and often she uses it. Antibiotics always seem to perk up my daughter through one of these episodes but her doc. seldom wants to order them. It always takes her more than 2 weeks plus to beat a virus. Air conditioning and sleeping cool at night are also a must. Do try to get more rest. Hugs, Bernie Re: Adrenaline/POTS Bernadette, So very sorry I couldn't respond right away...If I seem to dissappear after I post--it's most likely that I am sick. I have been sick with a mysterious bacterial infection that has me with swollen glands, the chills, and dizziness about every other day and have been sleeping on and off for a couple of weeks like a newborn baby. Had this about a total of 10 weeks in all so far. Had to wait for my regular doc's appt. for about a week and a half, but went to the urgent care a few days ago- they thought I had Mono. They still don't know what it is but my doc gave me Cipro 500mg 2 x's a day for 2 weeks. I sometimes can read here for a while but fall asleep before I get around to posting. There's so much I want to reply to. Nights are when I am awake the longest. Now, about the POTS~ yes, I agree that our kids seem to have the same problem with that. , when he was younger, had high pulse rates that came on all of a sudden and left as fast as they came for no apparent reason. Since he's now at a lower level of activity he doesn't seem to have them anymore. I always hated it when he put his feet on the dash when I drive, but if it makes him feel better on these hot days I will let him. Gatorade is now going to replace lemonaid for the rest of the summer at least. It's nice to know we are not alone...I'm reading about so many similarities in articles about both my kids. That one article about the 13 y/o girl the size of a 10 y/o got my attention because that's just how my 13 y/o daughter is. Reading here is helping me cope better with the EDS aspect of our lives. I am here in spirit even if I can't post! Blessings, ~Duv () To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Hi : Re: Putting the feet on the dash.....my daughter broke the glove compartment lock from having her feet there so often and needing to press on the dash to utilize the muscle pump in her legs. Now I can't get at the automatic trunk opener inside the glove compartment but I just live with it. Did you know that jiggling your feet and legs lots before getting out of bed in the morning helps reduce the severity of that awful morning dizziness my kid had. Before medication, she would walk to the bathroom doubled over at the waist to reduce the severity of dizziness. Also, I have been told that 2 cups of water will raise the blood pressure 10 mm. of mercury for 1 hour so if one can drink before getting out of bed it helps, and drinking extra fluids at bedtime. When my daughter has engaged in too much physical activity her first symptoms will be a raw, sore throat, really bad breath and a huge amt of extra sleeping. If she has bad breath, I know immediately that she needs greater down time. If you are falling asleep at the computer while reading, sounds like you need to get a lot more rest, though I do know of others in our community who have had a summer virus with temps of 101....non HEDS people. A bath in Epsom salts really, really sooths my daughter and I buy Epsom salts by the 4 kilo container at Cosco.....that's how much and often she uses it. Antibiotics always seem to perk up my daughter through one of these episodes but her doc. seldom wants to order them. It always takes her more than 2 weeks plus to beat a virus. Air conditioning and sleeping cool at night are also a must. Do try to get more rest. Hugs, Bernie Re: Adrenaline/POTS Bernadette, So very sorry I couldn't respond right away...If I seem to dissappear after I post--it's most likely that I am sick. I have been sick with a mysterious bacterial infection that has me with swollen glands, the chills, and dizziness about every other day and have been sleeping on and off for a couple of weeks like a newborn baby. Had this about a total of 10 weeks in all so far. Had to wait for my regular doc's appt. for about a week and a half, but went to the urgent care a few days ago- they thought I had Mono. They still don't know what it is but my doc gave me Cipro 500mg 2 x's a day for 2 weeks. I sometimes can read here for a while but fall asleep before I get around to posting. There's so much I want to reply to. Nights are when I am awake the longest. Now, about the POTS~ yes, I agree that our kids seem to have the same problem with that. , when he was younger, had high pulse rates that came on all of a sudden and left as fast as they came for no apparent reason. Since he's now at a lower level of activity he doesn't seem to have them anymore. I always hated it when he put his feet on the dash when I drive, but if it makes him feel better on these hot days I will let him. Gatorade is now going to replace lemonaid for the rest of the summer at least. It's nice to know we are not alone...I'm reading about so many similarities in articles about both my kids. That one article about the 13 y/o girl the size of a 10 y/o got my attention because that's just how my 13 y/o daughter is. Reading here is helping me cope better with the EDS aspect of our lives. I am here in spirit even if I can't post! Blessings, ~Duv () To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 : I will have my daughter e-mail you with her e-mail address in the am. and perhaps these two can chat on line. Her computer skills are much superior to mine. It does her so much good to be able to share her coping strategies with other young people.....and yes I still have to remind her to jiggle or pump those legs in the morning and I am always asking her if she has drank enough. It takes a long time to train oneself to do these things, but when it reduces lightheadedness even a small amt. they are more inclined to do so themselves. Yes, I also was certain that my dtr had CFIDS at first. There are a huge number of similarities and perhaps they are related in some way. My 64 yr old sister has CIFIDS as does her daughter who has had it since 1984 at approx. 25 yrs. so I know it exceedingly well. They are still affected quite severely. The big difference I saw was that my dtr. had more energy than they when she was first affected but particularly they do not have, nor did they have in youth, the extensive laxity in the joints. My dtr. had a fine motor delay due to laxity in fingers and wrist joints and still is unable to cursive write. Fingers get too painful and cannot maintain the fine motor control. The computer is a huge asset to her. Additionally, she walked on her toes and ball of her foot from 18 mos. when she picked up speed. I now understand from Dr. Grubb this is caused by the too elastic ligaments that were not able to contract adequately and provide for normal walking. The explanations and understanding he provided were so very helpful to us. It meant the world to have someone be honest about the condition. She walks normally now after achilles tendon surgery at 11, though some mornings when her low BP is affecting her she will still do a bit of toe walking. Mornings are always the worst. Her shoulder and hip joints are also very loose and causing problems plus her thumbs can dislocate. As an infant we could never pull her to a standing position by pulling on her arms as she would cry with discomfort and we were not aware of the significance. It is amazing how quickly a parent perceives not to do these things. This is a long process of adapting and maintaining a lower activity level so try to be patient with yourselves even though you want immediate return to previous functional levels. Avoid standing for long periods. Walk around while brushing teeth, prepare vegetables while seated, Standing at the stove is tough....keep a stool nearby, wash pots in short spurts and use cooler water, avoid raising arms above your head for long periods, use a stool while cleaning the mirror and windows, we use an inexpensive Rubbermaid stepstool in the shower and cooler water. Warm water causes vasodilatation and almost instant lightheadedness. My dtr comes out of the shower with brighjt red legs from above the knee. Also sits on the stool to dry off. When in the bath will elevate feet on the wall over the taps, particularly before standing to get out. Elevating feet and legs while eating meals can reduce some of the nausea that ocurrs with meals. Perhaps you are even doing some of these things already. The bathroom stool was a huge help. Us lots of lists if you notice memory problems......sometimes I think the fatigue caused by low BP contributes to the memory problems. Hang in there and take care. Bernie Re: Adrenaline/POTS Bernadette, Thanks for the tips, told my son about the moving his legs and the fluids--he says he will try it (if he remembers). I have been eating more salt in my diet--that has helped me have less black-outs in general. As for this current temporary illness, I'm sure I got it from drinking from my son's glass, accidently, over 2 months ago. I remember trying to rinse my mouth out with peroxide and making note that if I was sick, it's from 's glass. He's been dragging quite a bit lately too, but it's mostly from the heat of summer. I'm sure it's time for a checkup and follow up with some doctor somehwere. What you describe your daughter as having a sore throat, bad breath, and fatigued, it's a like and I too. I haven't been diagnosed yet with EDS but has--those are his classic symptoms after activity. I thought it was more like CFIDS. The diagnostic criteria has to fit to get that diagnosis. I can't remember where I found this but I saved it in a text document about CFIDS; " The clinicians conclude that to have the disease diagnosed, you not only have to become ill after exercise, as the present guidelines state, but that you must also have 'neurological, neurocognitive, neuroendocrine, dysautonomic and immune manifestations' < indicating that the hormone and immune systems are disturbed. " The immunologist said it was rare, but we both have the same exact immune deficiency. I describe our lifestyle like that computer game, Oregon Trail; if we don't eat enough or do too much, or go too fast without proper rest(more than a healthy person needs), we just get sick. I tend to get sinus inflamation and burning in my lungs that later turns into inflamation and a cough. I lose my voice and/or have a scratchy voice for days until I rest more. gets so weak that he chokes on his saliva too--then I know he's way over done it. He also has paralysis of his esophagus caused by a motility disorder, most likely from the acid of GERD. I'm going to see if wants to start posting on here for himself. He wants to know which computer games your daughter likes to play Blessings, ~Duv() Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 : I will have my daughter e-mail you with her e-mail address in the am. and perhaps these two can chat on line. Her computer skills are much superior to mine. It does her so much good to be able to share her coping strategies with other young people.....and yes I still have to remind her to jiggle or pump those legs in the morning and I am always asking her if she has drank enough. It takes a long time to train oneself to do these things, but when it reduces lightheadedness even a small amt. they are more inclined to do so themselves. Yes, I also was certain that my dtr had CFIDS at first. There are a huge number of similarities and perhaps they are related in some way. My 64 yr old sister has CIFIDS as does her daughter who has had it since 1984 at approx. 25 yrs. so I know it exceedingly well. They are still affected quite severely. The big difference I saw was that my dtr. had more energy than they when she was first affected but particularly they do not have, nor did they have in youth, the extensive laxity in the joints. My dtr. had a fine motor delay due to laxity in fingers and wrist joints and still is unable to cursive write. Fingers get too painful and cannot maintain the fine motor control. The computer is a huge asset to her. Additionally, she walked on her toes and ball of her foot from 18 mos. when she picked up speed. I now understand from Dr. Grubb this is caused by the too elastic ligaments that were not able to contract adequately and provide for normal walking. The explanations and understanding he provided were so very helpful to us. It meant the world to have someone be honest about the condition. She walks normally now after achilles tendon surgery at 11, though some mornings when her low BP is affecting her she will still do a bit of toe walking. Mornings are always the worst. Her shoulder and hip joints are also very loose and causing problems plus her thumbs can dislocate. As an infant we could never pull her to a standing position by pulling on her arms as she would cry with discomfort and we were not aware of the significance. It is amazing how quickly a parent perceives not to do these things. This is a long process of adapting and maintaining a lower activity level so try to be patient with yourselves even though you want immediate return to previous functional levels. Avoid standing for long periods. Walk around while brushing teeth, prepare vegetables while seated, Standing at the stove is tough....keep a stool nearby, wash pots in short spurts and use cooler water, avoid raising arms above your head for long periods, use a stool while cleaning the mirror and windows, we use an inexpensive Rubbermaid stepstool in the shower and cooler water. Warm water causes vasodilatation and almost instant lightheadedness. My dtr comes out of the shower with brighjt red legs from above the knee. Also sits on the stool to dry off. When in the bath will elevate feet on the wall over the taps, particularly before standing to get out. Elevating feet and legs while eating meals can reduce some of the nausea that ocurrs with meals. Perhaps you are even doing some of these things already. The bathroom stool was a huge help. Us lots of lists if you notice memory problems......sometimes I think the fatigue caused by low BP contributes to the memory problems. Hang in there and take care. Bernie Re: Adrenaline/POTS Bernadette, Thanks for the tips, told my son about the moving his legs and the fluids--he says he will try it (if he remembers). I have been eating more salt in my diet--that has helped me have less black-outs in general. As for this current temporary illness, I'm sure I got it from drinking from my son's glass, accidently, over 2 months ago. I remember trying to rinse my mouth out with peroxide and making note that if I was sick, it's from 's glass. He's been dragging quite a bit lately too, but it's mostly from the heat of summer. I'm sure it's time for a checkup and follow up with some doctor somehwere. What you describe your daughter as having a sore throat, bad breath, and fatigued, it's a like and I too. I haven't been diagnosed yet with EDS but has--those are his classic symptoms after activity. I thought it was more like CFIDS. The diagnostic criteria has to fit to get that diagnosis. I can't remember where I found this but I saved it in a text document about CFIDS; " The clinicians conclude that to have the disease diagnosed, you not only have to become ill after exercise, as the present guidelines state, but that you must also have 'neurological, neurocognitive, neuroendocrine, dysautonomic and immune manifestations' < indicating that the hormone and immune systems are disturbed. " The immunologist said it was rare, but we both have the same exact immune deficiency. I describe our lifestyle like that computer game, Oregon Trail; if we don't eat enough or do too much, or go too fast without proper rest(more than a healthy person needs), we just get sick. I tend to get sinus inflamation and burning in my lungs that later turns into inflamation and a cough. I lose my voice and/or have a scratchy voice for days until I rest more. gets so weak that he chokes on his saliva too--then I know he's way over done it. He also has paralysis of his esophagus caused by a motility disorder, most likely from the acid of GERD. I'm going to see if wants to start posting on here for himself. He wants to know which computer games your daughter likes to play Blessings, ~Duv() Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 : I will have my daughter e-mail you with her e-mail address in the am. and perhaps these two can chat on line. Her computer skills are much superior to mine. It does her so much good to be able to share her coping strategies with other young people.....and yes I still have to remind her to jiggle or pump those legs in the morning and I am always asking her if she has drank enough. It takes a long time to train oneself to do these things, but when it reduces lightheadedness even a small amt. they are more inclined to do so themselves. Yes, I also was certain that my dtr had CFIDS at first. There are a huge number of similarities and perhaps they are related in some way. My 64 yr old sister has CIFIDS as does her daughter who has had it since 1984 at approx. 25 yrs. so I know it exceedingly well. They are still affected quite severely. The big difference I saw was that my dtr. had more energy than they when she was first affected but particularly they do not have, nor did they have in youth, the extensive laxity in the joints. My dtr. had a fine motor delay due to laxity in fingers and wrist joints and still is unable to cursive write. Fingers get too painful and cannot maintain the fine motor control. The computer is a huge asset to her. Additionally, she walked on her toes and ball of her foot from 18 mos. when she picked up speed. I now understand from Dr. Grubb this is caused by the too elastic ligaments that were not able to contract adequately and provide for normal walking. The explanations and understanding he provided were so very helpful to us. It meant the world to have someone be honest about the condition. She walks normally now after achilles tendon surgery at 11, though some mornings when her low BP is affecting her she will still do a bit of toe walking. Mornings are always the worst. Her shoulder and hip joints are also very loose and causing problems plus her thumbs can dislocate. As an infant we could never pull her to a standing position by pulling on her arms as she would cry with discomfort and we were not aware of the significance. It is amazing how quickly a parent perceives not to do these things. This is a long process of adapting and maintaining a lower activity level so try to be patient with yourselves even though you want immediate return to previous functional levels. Avoid standing for long periods. Walk around while brushing teeth, prepare vegetables while seated, Standing at the stove is tough....keep a stool nearby, wash pots in short spurts and use cooler water, avoid raising arms above your head for long periods, use a stool while cleaning the mirror and windows, we use an inexpensive Rubbermaid stepstool in the shower and cooler water. Warm water causes vasodilatation and almost instant lightheadedness. My dtr comes out of the shower with brighjt red legs from above the knee. Also sits on the stool to dry off. When in the bath will elevate feet on the wall over the taps, particularly before standing to get out. Elevating feet and legs while eating meals can reduce some of the nausea that ocurrs with meals. Perhaps you are even doing some of these things already. The bathroom stool was a huge help. Us lots of lists if you notice memory problems......sometimes I think the fatigue caused by low BP contributes to the memory problems. Hang in there and take care. Bernie Re: Adrenaline/POTS Bernadette, Thanks for the tips, told my son about the moving his legs and the fluids--he says he will try it (if he remembers). I have been eating more salt in my diet--that has helped me have less black-outs in general. As for this current temporary illness, I'm sure I got it from drinking from my son's glass, accidently, over 2 months ago. I remember trying to rinse my mouth out with peroxide and making note that if I was sick, it's from 's glass. He's been dragging quite a bit lately too, but it's mostly from the heat of summer. I'm sure it's time for a checkup and follow up with some doctor somehwere. What you describe your daughter as having a sore throat, bad breath, and fatigued, it's a like and I too. I haven't been diagnosed yet with EDS but has--those are his classic symptoms after activity. I thought it was more like CFIDS. The diagnostic criteria has to fit to get that diagnosis. I can't remember where I found this but I saved it in a text document about CFIDS; " The clinicians conclude that to have the disease diagnosed, you not only have to become ill after exercise, as the present guidelines state, but that you must also have 'neurological, neurocognitive, neuroendocrine, dysautonomic and immune manifestations' < indicating that the hormone and immune systems are disturbed. " The immunologist said it was rare, but we both have the same exact immune deficiency. I describe our lifestyle like that computer game, Oregon Trail; if we don't eat enough or do too much, or go too fast without proper rest(more than a healthy person needs), we just get sick. I tend to get sinus inflamation and burning in my lungs that later turns into inflamation and a cough. I lose my voice and/or have a scratchy voice for days until I rest more. gets so weak that he chokes on his saliva too--then I know he's way over done it. He also has paralysis of his esophagus caused by a motility disorder, most likely from the acid of GERD. I'm going to see if wants to start posting on here for himself. He wants to know which computer games your daughter likes to play Blessings, ~Duv() Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Bernadette, Some of what you described I see so much in my youngest! He has been walking on his tippy toes since he started walking at 2. He's now 3-1/2. He doesn't do it all the time though. Was that like your dtr too? In the mornings he is VERY lose. I carry him down the steps, (I shouldn't cause I'm on a 5lb limit. But have a life to live) and his hips click. When we put on socks or shoes, if they are tight. He cries cause I guess it hurts. His ankles click alot. My oldest has a grinding shoulder as well as other joints. And he is very light headed in the mornings. It seems the more I read other peoples posts about what's going on, the more I see in myself and 2 of my 4 boys. I can no longer deny EDS. There is just to much of the same things going on to ignore it. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Bernadette, Some of what you described I see so much in my youngest! He has been walking on his tippy toes since he started walking at 2. He's now 3-1/2. He doesn't do it all the time though. Was that like your dtr too? In the mornings he is VERY lose. I carry him down the steps, (I shouldn't cause I'm on a 5lb limit. But have a life to live) and his hips click. When we put on socks or shoes, if they are tight. He cries cause I guess it hurts. His ankles click alot. My oldest has a grinding shoulder as well as other joints. And he is very light headed in the mornings. It seems the more I read other peoples posts about what's going on, the more I see in myself and 2 of my 4 boys. I can no longer deny EDS. There is just to much of the same things going on to ignore it. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Bernadette, Some of what you described I see so much in my youngest! He has been walking on his tippy toes since he started walking at 2. He's now 3-1/2. He doesn't do it all the time though. Was that like your dtr too? In the mornings he is VERY lose. I carry him down the steps, (I shouldn't cause I'm on a 5lb limit. But have a life to live) and his hips click. When we put on socks or shoes, if they are tight. He cries cause I guess it hurts. His ankles click alot. My oldest has a grinding shoulder as well as other joints. And he is very light headed in the mornings. It seems the more I read other peoples posts about what's going on, the more I see in myself and 2 of my 4 boys. I can no longer deny EDS. There is just to much of the same things going on to ignore it. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
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