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Everything posted by needafix

  1. I also take midordrine. I used to take 05mg 3 times a day now it is 10mg 3 xa day. but I have been told not to take it after 4pm. I passed out because I did not have any in my system when I was out one evening so now I take it when I need it no matter the time.
  2. Has anyone gone to a chiropractor or had accupuncture or tried functional medicine?
  3. Sorry you feel so bad, hopefully later you will feel better. I feel best during the afternoon.
  4. Congrats and thank you on your new title. I have someone living in my apt. with me just for this reason. They thought I was faking until I passed out a few weeks ago. One minute I was fine the next minute I was on the floor. I also have people that call and or tex daily. I am almost 2 hours from my closest relative because I wanted to be closer to a hospital that knew about my condition.
  5. Some disability cases are approved on the first try and some on the second try but mine was rejected on the second try so I finally had to get a lawyer. They did not charge anything until the case was won. Just don't give up.
  6. I learned a long time ago never say never. I am glad that people are applying for and winning their disability cases. Some people don't even know they could and should apply. Every case is different and is handled differently.You are right medical documentation is very, very important.
  7. While you were going to the chiropractor, do you think they helped you in any way. Can you speak more on what symtoms you think they helped you with.
  8. I purchased a colar that has little cubes that you freeze than put the cubes into the cloth to put around your head or neck. I think I got it from Harriet Carter. Let everyone know when you get your product ready please.
  9. You know you have POTS when your blood pressure readings in both of your arms are different by about 50 points.
  10. When I was working I found out that I had autonomic dysfunction and because I would get weak and dizzy, I had to constantly sit down. I applied for disability and was rejected so I applied for a second opinion, (this took about a year each time). After the second rejection I saw an ad on the TV where the lawyer would handle the case for no fee up front and take a portion of your award after the case was won, but nothing if the case is was not won. I dont think they would take the case if they didn't think they would win the case, (thats just my opiinion). Anyway after three years I won the case. In the first rejection letter they said my disease was not serious enough and that all I needed to do was take a pill. (if they only knew). Some of us look like there is nothing wrong but in the winter, I am afraid to go out by myself and in the summer, the only time I go out is early in the morning before the sun comes out. If that is not a disability I don't know what is. I think every one that has this disease should apply fo disability.
  11. Hello everyone. Becia I thought my place was small but I think you got me beat. As small as my place is, it seems like I have to take a million steps to get from the kitchen to the livingroom but it is really only about ten steps from my kitchen chair to my couch. I was just wondering if amyone has applied for disability. I applied two years and was denied but I then got a disability lawyer that takes your case fro free and get a portion when you win the case. I recently won the case, I think more should apply. If this is not a disability I don't know what is.
  12. Hello everyone, I also have a stool at my sink and a chair that rolls at my table but I wish the chair that rolls was a little higher so that I could see over the pots on the stove. I still have to get up to check my pots. I was so scared to cut my hair but after I did I questioned myself why it took so long.
  13. I keep my meds and a small bottle of water in every room and in my pockets-you never know when you will need that little pill with water. Do Not Lock The Bathroom Door- it is better for a family member to get you out of the bathroom if needed than to have the fire depertment break the door down if you have passed out. Get a tub chair with a back-the back might help brace you if you pass out, it might prevent you from banging your head. Get a, take apart, shower seat to bring with you when you visit. (don't forget to get luggage long enough to carry it in. Place a clean cloth on the shower seat-so the seat will remain fresh. No more hot, steamy showers, make them as luke warm as possible. Take showers not baths-people don't usally drown in showers but people do drown if they pass out while taking a bath. I used to brush my teeth and wash my hair while in the shower, now I shower first and when I am out of the shower I brush my teeth. While you are in the shower wash everything two times because you don't when you are going to have the strength for your next shower. I have cut all of my beautiful hair off because I could no longer groom it properly, it actually feel good to wash and brush short hair. Put a mat or towel on the tub floor to stand on while taking a shower. Put handle bar where needed. Get a suction cupped clamp so you can position the shower head where you need it. It is bad when you become offensive to yourself because if you can smell you, others can smell you to. Keep a flashlight with you at night because turning on the bright light affects you (it seems to hit a nerve). I pass my kitchen while traveling from the bathroom to the livingroom so now I keep the dining chair turned around so if I can't make it to the livingroom I can just sit down without worring about pulling the seat out. Every second counts. These are just a few things that help me. What are some tips that help you.
  14. Let family and friends read this site so they might better understand what you are going through. People see you and you look perfect. People look at you crazy when you have to race to a seat to sit down before you fall down even if it is on the curb while you are walking outside. People wonder why you have to carry around your own chair or why you no longer go outside on sunny or hot days. You begin to feel like a vampire. Everyone wishes for the warm weather to come and we wish the cool weather never ends. Why you always feel cold, you always get gifts from people but you notice that the gifts are either heavy PJ's (no more silk), thick long socks, even gloves and ear mits.
  15. You know you have POTS when the pressure in your left and right arms are 50 points different in the same moment. There is even a difference in pressure with your head up or down and with your legs crossed or uncrossed.
  16. Hello everyone, please post any info you find while you are trying to identify the root cause of your autonomic dysfunction.
  17. I thank you for signing up for the studies. I have also signed up for some studies. We have to find out if something is in our blood or maybe a broken vein or maybe even a germ that we all have in common. Why did we get this. OK so we all have this, now how do we correct it. All I have heard is there is no cure but that is information from years ago. The more studies that are out the more can be learned.
  18. I appreciate all of the responses. If we don't fight for our cause than who will. We all have our own stories and can pinpoint when this came upon us. One day we could do things and the next day we could no longer do that same thing. As the days go on the less we can do. I think something in my system got lose or snapped. I thought I was a healthy person, I never smoked or drank or did drugs so I am trying to find out why I came down with something no one knows about. I think we have to show the doctors that are doing the studies that we care and want them to continue. We need to give them more imput about ourselves and our numbers so that they can ask for different studies and find more financial backing for the studies.
  19. At first I thought I was the only one with this disease. Since 2011 I was told it was rare but now after finding this site (2015), I see there are thousands of us. Is there a way to get medicare and the insurance companies to see that this is a large concern. I dont even think pharmacies know the seriousness of our problem. Have any of you had your brand of perscription changed and was told it is all the same, well all perscriptions brands are not the same. Have you gone into the hospital or Drs. office and kept there because your blood pressure was too high or low? We have enough to write a book. What do you think?
  20. Hello everyone, mine is passing out. Never know when it will happen. I felt weak so I took a pill and the next thing I knew I was in the ambulance. Later I was told I had passed out with my hand still in the running water.
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