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About Mike83IRL

  • Birthday 10/20/1983

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  1. Hey folks,just been experiencing an odd change in my symptoms the last few weeks and wondering if anyone here has had similar, so my history is.. not POTS but instead just low blood pressure(POTS minus the T),my heart rate stays steady enough,but BP drops low,standing or sitting,Dr unsure why,also I have alot of difficulty breathing which all seems to be related to a history of neck injuries. So the last few weeks my BP has been near normal(yay!) it's about 100/50 to 110/65,which is great for me!,breathing is still a problem though,as always.The strange thing is,I have been feeling really weak,and my resting heart rate,which is usually about 72-83 is changing a lot (65-85),no idea why but it seems to happen after meals(particularly fatty ones!), I would not pay this much attention but I can be left feeling so weak I can barely think straight,and I am back to loosing weight again.(Dr. had me on medical weight gain high calorie drinks because I was gone so low) I'm 31,male and first developed symptoms at 26,I would just go to my family Doc,but this stuff is over his head,and I won't see my neuro till Feb. Anyone has this symptom,unusually good BP,lower than normal HR and feeling weak as a kitten?
  2. Hopefu;;y sooner or later we will find a way to alleviate this symptom,it's by far the most troubling part of the illness for me.
  3. Okay so this seems more common with us than I tough,Jon,thanks for the info but unfortunately my disautonomia would appear to have been caused by a C-spine injury,so I don't think erythromycin would do much for me,no wheezing etc,lungs are 100%,just don't have the power in respiratory muscles.
  4. yeah alot of people with other medical conditions would benefit from having an information network as well organized as DINET.
  5. "Facebook plans entry into healthcare Oct 3 2014, 03:32 ET | About: Facebook (FB) | By: Yoel Minkoff, SA News Editor -Following on the heels of Apple and Google, Facebook (NASDAQ:FB) is planning its entry into the field of healthcare, Reuters reports. -The company is exploring several areas, such as creating online "support communities" that would connect users suffering from various ailments, and new "preventative care" applications that would help people improve their lifestyles. -Sources say that Facebook has been holding meetings with medical industry experts and entrepreneurs, and is setting up a R&D unit to test new health apps."
  6. Thanks GJenson, lots of info here.
  7. DKD I see on your tags that you're getting some meds,any help? Mido do anything?
  8. Angelloz that all sounds very familiar to me,I get the very same sensations,one several occasions when I have gotten these symptoms to an extreme,and have had to visit my family doc,he has sent me straight to ER by ambulance,they don't know what to do there other than oxygen mask,which does help some.
  9. Thanks Raisin, as I am going on Midodrine soon your post gives me cause for optimism, Can I ask what test the were able to do to measure blood pooling? getting some more tests done soon would love to find out if that's an option over here.
  10. Hey guys, I know some of you here have breathing issues also,and was just wondering if anyone has ever come across a good explanation of this?,I was diagnosed over seas,and my Docs here,while very helpful don't seem to have a good grasp of how dysautonomia effects my breathing, I know lots of people here have good medical knowledge and I'm always trying to get more info so heres a few questions if anyone has something to add.. 1. )Is there another mechanism or can low BP alone make breathing severely difficult? 2.) Has anyone here with breathing issues had them improve after going on BP meds? (Midodrine,Flourinef etc.) 3.) Does anyone here feel like Dysautonomia effects their breathing muscles? 4.) Has anyone come across any other treatments,meds or just lifestyle tips that helped with breathing issues? Thanks in advance for any help,want to hear if anyone has anything to add as breathing issues have always been the most life disrupting problems Dysautonomia has brought me.
  11. I know for a long time many Docs didn't have much interest in PP because it didn't seem to indicate anything in most people,I know recently there was a study done(can't find it now)which suggested a link between PP and a slightly early mortality rate in older patients,which got some interest, HOWEVER,it's very important to remember that that study doesn't really apply to people with Dysautonomia, as it was based on otherwise healthy patients with unexplained PP variations. For people like us with PP,we(usually) already know why it's happening,for us it's seems more like wide/narrow PP is more a symptom, than a cause, in Rich's research He mentions "arterial tone", from my understanding BP is controlled by the Autonomic nervous system, by the mechanism of constricting/dilating venous tone in the vascular system ,and the heart,acting as only the pump does not actually have a role in these variations other than compensating via rapid heart rate(tachycardia), by that logic would we not have some explanation in that vascular tone is regulated by the Autonomic system, and for various reasons, we are people for whom the Autonomic system does not function properly? All that said it would seem that the new studies on PP,which are early days at best,probably don't mean anything too ominous for us as we already have a fair idea of what's gone wrong with our BP, PP variations are just another reflection of that. Just my half baked opinion,I'm open to correction on all of the above.
  12. Hey Matt, you know your own body better than anyone,but from personnel experience I would be careful with working out when you are suffering with neck pain,I am convinced that's exactly what what made me sick,a theory which it would appear was confirmed last month,see post here.... http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/ We all seem to have different histories,and not saying my case is anything like yours,but as someone who's first ER visit came after collapsing in a weight room I just want to say be careful buddy,my Doc tells me swimming is a great workout,good for circulation, and puts very little stress on your joints(and neck!). you know what's best for you,just my two cents. Good luck with getting the improvements you want,seems like you got the right attitude!
  13. Season 10 kicks of Oct. 7th,looks hilarious... Does Fringe pick up much in later episodes?,tried first two but didn't feel the love.
  14. I started trading Tech stocks as I worked in IT previously and spend all my time nerding out over that stuff anyway,on bad days I can work entirely from a smartphone(LOTS of reading/researching) when I cant be at my workstation (which is also modified),fair warning though it can be risky if you don't have a fair idea what you're doing,it can also be a stressful when things are on a downswing if you tend to be a worrier .
  15. Wow,okay so seems like this is a common trait among POTSies, saw my GP today and he gave me an interesting new device that attaches to the back of a smartphone and measures ECG through contact with fingers held on back of the phone for 30secs intervals several times a day,then reports goes straight to GP's office,going to see if low BP is effecting tremors.
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