Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Cindy - I sure think it sounds like POTS. I know that heart rate is lower than normal in POTS people - esp when you take into consideration that he isn't moving around much in general - it 'should' be higher if he were 'normal'. Pooling of blood can occur in the abdomen - esp after eating, but I think it can happen anytime. The blood pounding in his head is a feeling I'm familiar with. I can often feel the blood pounding HARD in my head - but not fast. Quick, easy thing you can do is push water and salt - not a cure, more like a very temporary bandaid. Light frequent meals are usually best for POTS. Any dizziness? Bed spins (I get these occasionally and get so mad - it's not like I got to drink the alcohol to cause it) If he has POTS what would the Imatrex and nausea meds do to his BP? (I'm totally clueless about most meds) The meds could be doing something funkier than normal if his bp is unusally low. Or they could just start causing side affects on their own. What's the weather like there? No kidding --- high and low pressure systems with weather can cause weird symptoms with POTS. Any way you can take his blood pressure now and see if it's low? More prayers headed your way. > Hi all, Dylan says he feels " weird " . His pulse is 64. Says he feels his pulse in his head, but if the " blood gets moving " it pounds harder. He says he can't figure out if he has a head ache or not. Yesterday he had the start of a migraine, so he took the Imatrex and the nausea med. I asked him if it gets worse if he lays down or stands up, He says it just comes and goes. Says his stomach feels weird. ( the boy's vocabulary doesn't help me much) I keep wondering if he may have POTS. Is this a symptom of it? He is concerned about the way he feels, like something isn't right. I caught the Dr walking out tonight, and he said to feed him ( the kid hadn't eaten all day, but that's not unusual anymore) I can only get one meal a day in him, so I make it the most balanced I can. So he ate 2 hours ago, and it is still happening, what ever it is. Any clue what he's talking about? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi Cindy, I am so sorry to hear that things are as tough as they are with Dylan still... And now something new too... I do feel my pulse in my head a lot, but it is especially when my pulse is high. I am talking around 100-130 resting pulse. I don't know if you can get it if your blood pressure gets higher or fluctuates? It is really, really annoying and makes me very, very irritated when it is going on, because I just can't get any rest and my body feels sort of restless etc., but I think that is much because of the pulse being high. I know my doc told me when we met at the dermatology congress that he had to find somebody who used the same betablockers as he did, because it drove him nuts when his pulse got high because of such things, but the betablockers kept his pulse to a wonderful 50-55. But really, I have no idea what causes the pulse sound and such a feeling that it pounds a lot. I have wondered if the blood pressure can vary between quite low and then high, and if that can cause it to feel like that, but I don't know. I really hope you can figure out what is going on... Aase Marit >Hi all, Dylan says he feels " weird " . His pulse is 64. Says he feels >his pulse in his head, but if the " blood gets moving " it pounds >harder. He says he can't figure out if he has a head ache or not. >Yesterday he had the start of a migraine, so he took the Imatrex and >the nausea med. I asked him if it gets worse if he lays down or >stands up, He says it just comes and goes. Says his stomach feels >weird. ( the boy's vocabulary doesn't help me much) I keep wondering >if he may have POTS. Is this a symptom of it? He is concerned about >the way he feels, like something isn't right. I caught the Dr >walking out tonight, and he said to feed him ( the kid hadn't eaten >all day, but that's not unusual anymore) I can only get one meal a >day in him, so I make it the most balanced I can. So he ate 2 hours >ago, and it is still happening, what ever it is. Any clue what he's >talking about? >Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Forgot one thing, Cindy... I think his pulse is considered totally normal, I think 60-80 is... Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi Cindy, I suddenly had an a-ha experience... Occular migraines... Then you feel really weird, it is so hard to explain... But I do call it weird when I have it. You feel sort of a bit beside yourself, I get a funny feeling where the relationship between my head, my body and also to the surroundings becomes really funny and it feels a bit surreal. And I can have the pulse pounding in my head... But I have no headache whatsoever. Before I get them, i get the ordinary migraine aura though. But I am sure you can get them with no aura as well, just as you can with the other types of migraines... I get three different types of migraines, this is one of them... Maybe that is what Dylan has experienced? His first occular migraine? Of course I can't know, but it was just an idea that just popped into my mind while I was sitting here typing something else. It just struck me, maybe that is what it is... And it could explain his " I don't know if I have a headache " or something like that, question. Because you feel as if you should really have one, but you don't... hugs, Aase Marit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Well, he had a migraine starting the day before and took Imatrex so, could be. He definitely had a hard time putting into words what he was feeling. He's still sleeping, so I'll see how he is today when he gets up. I'll look up ocular migraines too. Thanks! Cindylouwho Re: Can't figure it out Hi Cindy, I suddenly had an a-ha experience... Occular migraines... Then you feel really weird, it is so hard to explain... But I do call it weird when I have it. You feel sort of a bit beside yourself, I get a funny feeling where the relationship between my head, my body and also to the surroundings becomes really funny and it feels a bit surreal. And I can have the pulse pounding in my head... But I have no headache whatsoever. Before I get them, i get the ordinary migraine aura though. But I am sure you can get them with no aura as well, just as you can with the other types of migraines... I get three different types of migraines, this is one of them... Maybe that is what Dylan has experienced? His first occular migraine? Of course I can't know, but it was just an idea that just popped into my mind while I was sitting here typing something else. It just struck me, maybe that is what it is... And it could explain his " I don't know if I have a headache " or something like that, question. Because you feel as if you should really have one, but you don't... hugs, Aase Marit 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 June 3, 2004 Report Share Posted June 3, 2004 Cindy, If you are still worried about him then get him seen to. I have had similar experiences and had to take myself off to the ER the last time they tested me out for aortic dilation and things to rule them out. If you have fed him and it didn't help then get him looked at by his doctor or the ER. I too am a migraine sufferer as well as many many other symptoms a lot of which have no known cause. Good Luck and here is hoping that you can find a cause for the symptoms and a way to correct or cure them (I take a calcium channel blocker and this has caused some of my symptoms in the early days but after this long (over 12 months now) I don't seem to get much in the way of side effects but I do get the benifit of the adalat (it is for my RSD and my raynauds (it increases the circulation to my extremities). SHaron > Hi all, Dylan says he feels " weird " . His pulse is 64. Says he feels his pulse in his head, but if the " blood gets moving " it pounds harder. He says he can't figure out if he has a head ache or not. Yesterday he had the start of a migraine, so he took the Imatrex and the nausea med. I asked him if it gets worse if he lays down or stands up, He says it just comes and goes. Says his stomach feels weird. ( the boy's vocabulary doesn't help me much) I keep wondering if he may have POTS. Is this a symptom of it? He is concerned about the way he feels, like something isn't right. I caught the Dr walking out tonight, and he said to feed him ( the kid hadn't eaten all day, but that's not unusual anymore) I can only get one meal a day in him, so I make it the most balanced I can. So he ate 2 hours ago, and it is still happening, what ever it is. Any clue what he's talking about? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Cindy, If you are still worried about him then get him seen to. I have had similar experiences and had to take myself off to the ER the last time they tested me out for aortic dilation and things to rule them out. If you have fed him and it didn't help then get him looked at by his doctor or the ER. I too am a migraine sufferer as well as many many other symptoms a lot of which have no known cause. Good Luck and here is hoping that you can find a cause for the symptoms and a way to correct or cure them (I take a calcium channel blocker and this has caused some of my symptoms in the early days but after this long (over 12 months now) I don't seem to get much in the way of side effects but I do get the benifit of the adalat (it is for my RSD and my raynauds (it increases the circulation to my extremities). SHaron > Hi all, Dylan says he feels " weird " . His pulse is 64. Says he feels his pulse in his head, but if the " blood gets moving " it pounds harder. He says he can't figure out if he has a head ache or not. Yesterday he had the start of a migraine, so he took the Imatrex and the nausea med. I asked him if it gets worse if he lays down or stands up, He says it just comes and goes. Says his stomach feels weird. ( the boy's vocabulary doesn't help me much) I keep wondering if he may have POTS. Is this a symptom of it? He is concerned about the way he feels, like something isn't right. I caught the Dr walking out tonight, and he said to feed him ( the kid hadn't eaten all day, but that's not unusual anymore) I can only get one meal a day in him, so I make it the most balanced I can. So he ate 2 hours ago, and it is still happening, what ever it is. Any clue what he's talking about? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Cindy, If you are still worried about him then get him seen to. I have had similar experiences and had to take myself off to the ER the last time they tested me out for aortic dilation and things to rule them out. If you have fed him and it didn't help then get him looked at by his doctor or the ER. I too am a migraine sufferer as well as many many other symptoms a lot of which have no known cause. Good Luck and here is hoping that you can find a cause for the symptoms and a way to correct or cure them (I take a calcium channel blocker and this has caused some of my symptoms in the early days but after this long (over 12 months now) I don't seem to get much in the way of side effects but I do get the benifit of the adalat (it is for my RSD and my raynauds (it increases the circulation to my extremities). SHaron > Hi all, Dylan says he feels " weird " . His pulse is 64. Says he feels his pulse in his head, but if the " blood gets moving " it pounds harder. He says he can't figure out if he has a head ache or not. Yesterday he had the start of a migraine, so he took the Imatrex and the nausea med. I asked him if it gets worse if he lays down or stands up, He says it just comes and goes. Says his stomach feels weird. ( the boy's vocabulary doesn't help me much) I keep wondering if he may have POTS. Is this a symptom of it? He is concerned about the way he feels, like something isn't right. I caught the Dr walking out tonight, and he said to feed him ( the kid hadn't eaten all day, but that's not unusual anymore) I can only get one meal a day in him, so I make it the most balanced I can. So he ate 2 hours ago, and it is still happening, what ever it is. Any clue what he's talking about? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
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