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Everything posted by Mike83IRL

  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
  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 set
  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
  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
  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
  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.
  16. Have had tremors from time to time over the last few years but they've always passed after a few minutes and so I don't worry about them so much, lately have had a few more than usual,this morning had them straight after getting out of bed,tried to record them for my Doc but obviously this proved difficult because I was shaking like a paint mixer, managed to take my resting BP just as it was ending,was 122/56 HR 84,which to me is very high systolic and about average diastolic,heart rate usually at 76-82. Could BP cause this? anyone had any experience? PS tremors start between my neck and left
  17. Being honest I live in Ireland and know almost nothing about the Mayo clinic beyond their web info,however as for Dysautonomia and Fibro,they have many common overlaps,people with Fibro often have Dysautonomia,and people with Dysautonomia often have Fibro. In my case I do not have Fibro but my treatment is being overseen by a Rheumatologist who specialises in Fibromyalgia, more info on this thread if your interested.... http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/ Anyway the causes of Dysautonomia can be different for everyone but just thought I would sha
  18. interesting,not sure what hyperkinetic circulation is,couldn't find much online?
  19. that's so bizarre,I am sure i used to have moons on my fingernails also but do not have any now? Also for those of you with ridges here is an interesting slide show from Mayo clinic that might be worth checking out...some conditions can be indicated although mostly it seems to be just a feature for some people. http://www.mayoclinic.org/healthy-living/adult-health/multimedia/nails/sls-20076131
  20. good news!,thanks for sharing :-)
  21. For those of us in Europe,Droxidopa has orphan drug status for treatment of Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA),since 2007.not sure how this effects availability or if it can only be prescribed by certain doctors in specific circumstances "According to the EMEA, orphan medicinal products are for diagnosing, preventing or treating life-threatening or very serious conditions that are rare and affect less than five of every 10,000 persons in the European Union " Anyone on the European side know anymore about this?
  22. that's interesting MightyMouse, going for Myelopathy therapy for the bulging discs in my neck in a few weeks
  23. yeah sounds similar Lewis,doc said the scope they used showed the lower muscles were in a constant "spasm",as far as I know these are another thing that are controlled by the autonomic system.He said try the Myelopathy therapthy for a few months and come back for meds if no success.fingers crossed!
  24. Hey Courtney, I haven't used FB in ages,someone else wanted more info on this also,so I can forward you the PM I sent ,get back to me if you want anymore info, I check DINET every few days.
  25. OP everyone who's given advise here so far seems more knowledgeable on these particular issues than me,but if none of these suggestions lead to a firm diagnosis,here's one more avenue you could maybe investigate....rather than leaving a very long post i'll just link to a thread I started a few weeks ago where I detail the tests that lead to my recent diagnosis(after4.5 years of searching!) http://forums.dinet.org/index.php?/topic/25884-new-diagnosisfinally-an-explanation/ I begin treatment in a few weeks and will be keeping that thread updated. Good luck and best wishes ,remember no matter
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