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UtahApoc

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Everything posted by UtahApoc

  1. Some may have heard of the Swine or Pig flu that has started to spread. just wanted to put out a notice to everyone. If this things does become pandemic we are a very bad target. Our bodies are already sick, and this flu can be deadly.
  2. Shortly after getting diagnosed I developed a scale to rate how I was doing each day and what symptoms I was having. 0= Perfectly normal day, No Symptoms. (I have had 1-2 of these since diagnosis) 1= My new Normal, Slight lightheaded, slight headache (My most common day) 2= Mild Symptoms, Increased headache, trembles, Light head, slight dizzy, brain fog (2-3 days a week) 3= Bad Symptoms, Very shaky, Migraine, Sweats, Brain Daze, very dizzy. (4-6 times a month) 4= Pre-Syncope, Bad shakes, Sweat, Light Headed, feel of passing out. (3-4 Times year now) 5= Syncope, Complete pass out, migraine, dizziness, brain mush, horrible feeling. (1-2 a year now) Do any of you fit a similar scale? How often do you fit each level?
  3. That is the exact reason why I posted this. Reading the entire article the unit uses a different method to get the BP. It will not have inflate and will be just like a pulse monitor. Yes, it is 5 years away but it is an advancement that could be very useful for those of us facing BP problems.
  4. Found this via digg: http://digg.com/health/Wearable_blood_pres...nitoring?OTC-ig and the direct article: http://web.mit.edu/newsoffice/2009/blood-p...ure-tt0408.html
  5. I know that when I first got diagnosed I was told that men are even more rare to have dys. I am curious as to who, and how many on this forums are a guy like myself. Was just thinking that we can chat some since we may have some differences then the nice ladies here do.
  6. First DINET Chat. Friday April 3rd, 2008 at 8:00 EDT
  7. Mine is a very long, and yet to proven theory. When I was born I was smart and did not want into this world. The Dr. was forced to use forceps to bring me out. The forceps had been used to hard (evidenced by two "Frankenstein" bald spots.) Later in life I started to have a nervous tic in which I twirl my head a bit. (imagine nodding yes and no at the same time) My belief is the forceps use caused some motor reflex damage that caused the tic. So I spend my life with a twirling head which constantly is manipulating the neck area. It has been shown that certain neck injuries can bring on the Dys. I started having symptoms (unknown to be Dys at the time) throughout my teen years. I later was diagnosed with Idiopathic Hypovolemia. So is this what happened to me? I may never know, but the few Drs. I mentioned it too seem to feel its a good possibility. Maybe the answer will come if I ever can get to a true ANS clinic. So in short.... Forceps>>Brain Injury>>Head Tic>>Neck Injury>>Dysautonomia
  8. We should set as day and time that we can all meet for a chat!
  9. I also would like to get more information about this Dr. Denver is just a brief train ride for me and I would like the chance to actually see a specialist.
  10. One of the worst parts of having an "Invisible Disease" is that people SEE that you look fine and healthy so they do not understand how you really feel.
  11. Dani, I know how that is. I just a 2 weeks ago went through a very bad week. Sometimes I lost hope and thought I was not going to recover again..... I Did though. This week I was back able to attend school and things seem to be stable again. As I understand you are fairly new too this disorder and it will take time to determine the "New You" it took me almost two full years at first. The best you can do is use all the support that you can. Learn what things help you, and those that make things worse. Unfortunately for us we have to somewhat be our own doctors. I wish you the best, and hope you can start to feel even just a bit better. Damon
  12. Hey Dani, Welcome aboard. I also am trying to handle college. I ended up missing last week do to a relapse and it scares me of if I will not finish. Luckily I again am improving and made class tonight. I still had some brain fog, but luckily the teacher understands and is just glad im physically there. I hope that you will get to the point you can finish your schooling.
  13. I wrote this shortly after being diagnosed seven years ago. I thought I would share it with you all: This poem is dedicated to all those who suffer from Dysautonomia. Please feel free to share it. I use it to get my head back up, and have some hope.
  14. I get quite a few hot flashes. I don't know if that is what you are experiencing or not. It is one of the key symptoms that I am getting into a more severe 'spell'
  15. The first two years there was no way I could dance. Finally after getting my new norm I could dance again, and did when I could. I still can't go all night and have to rest a lot. Right now though im sure I could not make even an effort. (I also had to pick the last option for fun)
  16. Hypovolemia was my diagnosis 7 years ago. I had the dreaded TTT with no drugs. I actually did not even do the test.... during the 45 degree baseline tilt I went into a full syncope. At the time the told me it was "Idiopathic Hypovolemia" the main reason it was not outright POTS was the BPM did not increase as much as expected, but the BP drops further off then expected. Not sure if this applies in your situation or not just what I experienced.
  17. Thanks All for the quick replies. A few questions were asked: First, Idiopathic Hypovolemia is a Form of POTS (My understanding) As to the Dr., I don't have one. I just have learned a lot and pass that along to the ER when I was there. If this relapse continues I will be getting a DR again and starting more treatment. Guess I was lucky the last 3 years. When at the ER the other night i got 2 bags, without any real relief. If im still down tomorrow I am supposed to return and then get more treatment, and set up with a DR.
  18. Hello All, I just joined but was first diagnosed with Idiopathic Hypovolemia seven years ago. After being diagnosed it took me a good 2-3 years to recover to a functioning life. Currently I am attending college and hoping to do many good things. Last weekend though the dreaded happened..... Relapse. First thought it was just a quick spell since I still get them now and then. Unfortunately; Rest, Liquids, and Lying down failed to work. After the second day I decided to visit the Er to verify it was not some other virus, or illness. All the tests came back fine, and it appeared to be my dysautonomia. The Dr. decided to give me a orthostatic blood pressure check after getting an IV of fluids. The Lying, and sitting were not that bad. Then it was time to stand, a minute in and I knew I was not going to make it. I had the nurse start the BP cuff. Soon as it was inflated I had to sit; more than I could take. After crashing down onto the bed the BP finally came up as 69/57. This is not my worst, but one of; also has been ages since a crash this hard. Anyways, its now the sixth day. Seems that im not recovering at all. I have missed the week of school. I can't even shower. I hope that this will still pass. I am losing hope again though. The one advantage so far was finding this forum, and getting registered. Having people that understand can be such a benefit. I look forward to talking to you all.
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