June 15, 2015 at 2:22 am #854
About steroid injections. There seems to be a pattern in some families. If someone has a form of Dysautonomia, would they be affected by steroid injections, such as losing consciousness and loss of bodily functions? That happened to my husband. Then after, his brother got an injection, and same thing happened. I got an injection with no affects. One month later got another one, seemed to be fine, then the next day face swelled and broke out in raised red patches.
Also things that are going on with me, my body doesn’t want to go into rest after activity. I feel as though I’m on a riding lawn more that never stops. I feel like I have to tell myself to breathe. And I feel as though I need to look up in order to be able to breathe better. I feel the constant pressure in my head neck and upper chest along with pain. Another weird symptom is Going up and down in an elevator makes me keep the sensation even hours later. On flat ground it feels as though the ground is shaking and I’m constantly going up and down. And the vision problems are getting worse, even though I just saw the eye doctor. It’s like my glasses keep getting fogged, so I take them off to clean them off, but the fog is still there even with the glasses off. I keep getting the flashes of light as I blink from time to time. And the very dark floaters. And is it normal to hear squishing sounds, when moving your head, and feeling your heart pound and shake your entire body?June 15, 2015 at 5:51 pm #5547
Hello, and welcome! It may help us to understand you better if we knew which of these invisible illnesses you are suffering from?June 17, 2015 at 12:21 am #5548
This is what I have been diagnosed with so far. Hashimotto’s, hypertension, Hyperlipodemia, Mild mood disorder(boy do they have wrong. Should be strong not mild), ADD, carpal tunnel syndrome, primary osteoarthritis involving multiple joints, also the spine with scoliosis, carotid artery stenosis, small vessel disease cerebrovasular, Crohn’s, Tinnitus of both ears, skin sensation disturbance. There is so much more going on that they can’t seem to figure out, and just go by test readings, but I still live with so many symptoms that are getting worse every day, and I’m tired of telling docs about them, only to be told that I’m fine.
Sorry for the delay in replying, but I typed it all out last night and lost it trying to submit it. Thank you so much for caring. Until I found your site, I felt all alone because my symptoms sounded so weird to all my docs, and I was even told I was weird.June 17, 2015 at 12:26 am #5549
Also, everything I do is becoming such a struggle, that I don’t want to do anything but sit in my room all alone. I have given up just about everything that I love to do. I struggle with the most simpliest things.June 18, 2015 at 11:20 am #5550
My friend, I think I join most everyone here in telling you that you most certainly are NOT alone! Many of us suffer from similar diagnoses. Do you know if you have POTS?June 18, 2015 at 1:42 pm #5551
No diagnosis of POTS yet. I know that I had a dizzy spell the other day, I mentioned it to my doc office online. The next day when I wasn’t feeling dizzy, the PA told me to check BP laying sitting and standing. It did drop sitting and standing but only 20 points. I can remember almost blacking out a lot upon standing when I was younger many many times. Even losing full sight one time for a few minutes but not losing consciousness. I think I did kind of lose consciousness a few times when I was alone with my children. I remember going down, holding on to the bathroom door and I could hear my kids who were standing by me, but there voices sounded far away and it was like I was completely out of it. That was frightening because they were very young. I’m about to get on a plane in a couple of hours and I will have to medicate so that I don’t get sick with stomach issues. Flew for years without problems and now I can’t. And I love to fly. I had a brain MRI around 9 or 10 years ago. I had one last year. I have a CD of the one I had back then. I think I want to see if I can get a copy of the one I had last year and compare them, if I’m allowed to get the last one. Doc said that the small vessel disease would not cause all the pressure in my head, down into my spine. No one can tell me why. Still not sure why I’m having vision problems if my eyes are OK. I told my eye doc about you and she has been doing some research on your site. She is very interested in these problems. Also, someone else in her office is doing the same. I am educating my PCP on this too. He is a family doc, and treats some of my grandkids. I showed him a pic of one of our twin girls that appears to have signs of EDS. The other twin and her brother have had slow development, and problems with hearing and sight. My kids all have had some problems too. My youngest wasn’t able to fight off viruses and had to have gamma shots for 2 years. My daughter, I’m pretty sure has Lupus, but doesn’t have insurance so she has never been diagnosed. I have had 2 ANA tests come back positive a few years ago, but now they are negative. Then all the problems with my husband and his family and no diagnosis is unbelievable. So I’m thinking we will have to go out of the state to find docs.June 20, 2015 at 11:06 am #5552
Instead of focusing on your blood pressure changes from lying down to standing, it may be helpful to monitor your heart rate (both are actually important). Because the diagnosis of POTS is made based on heart rate changes, not blood pressure, it may be enlightening in your case. 😉
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