Mrs. Glass

I was just wondering what web sights are best to get information . I have been to the Vanderbilt University Web site but it never changes. Of course it could be me. I used to be great on the computer now it seems like I can barely remember how to type anything in. It is very upsetting. So I wanted to take some control back in my life and do some research, but I dont know where to begin. Any suggestions. I can not spend a lot of time in front of the computer these days, it hurts my eyes and the screen gets distorted. But I figured if someone knew of Websites to go to that would save me some time in front of this screen. Thanks Vanessa

I was on .6mg a day and was still having problems. Then he added 10mg of midodrine, that seemed to work ok for a while, but then I did not know that your blood pressure can go up when you lie down and I ended up having a stroke. I am also on pain medication which raises my blood pressure so they took me off of the florinef and the midodrine temporarily until I can get thriough surgery. Then they will probably put me back on one or both on an as needed basis.

Can anyone tell me what the highest dose of Florinef is that they give to support the blood pressure?  I am on .5 as I said before but am still symptomatic (less so

than before but symptomatic none the less).  They mentioned adding Clonidine to the mix but I was just wondering what your experiences are.  I know everyone is

different but am just curious.  Thanks for the great welcome and support.

Terri

<{POST_SNAPBACK}>

Right now everything that I eat seems to make the symptoms worse. I was on Zantac for my stomach and it wasnt working and my neurologist said that he did not want me on a lot of medications right now. That I was to stop taking everything that I could not live without. The one thing that I do crave is Coffee! I do not know why, I used to have only 2 cups of coffee a day but now I want it all of the time. I do not drink it all day but I want to. Vanessa

Hi everyone,

I really want to do what I can to try to control this thing (hyperadrenergic POTS).  I've heard that caffeine, sugar, and milk products may make you more symptomatic.

How about you?  Do some foods make you more symptomatic?  Better?  For whatever weird reason, large chocolate McDonald's shakes make me feel better.  I don't know if it is the cold, the calories, or what. 

What foods do you think I should avoid?

Thank you!

Diana

<{POST_SNAPBACK}>

I fight the feeling all of the time. I had not been sick or been to the Dr for illnesses in over 20 years. I often wonder if my go go go attitude and not having regular checkups brought this on. My Dr keeps asking me if anyone in my family ever had nerological problems, and I keep telling him the same thing. NO! no one in my family as far back as I can remember ever had problems like this. So I often wonder if I did something to bring this about. But I guess I will never know. I just keep trying to put one foot in front of the other. Vanessa

I know some of you have had a sudden/unexplained onset of POTS like I did, and somedays I look back on how busy and active I was...constantly on the go, driving everywhere, working hard to meet needs, not sleeping... I start to wonder:  If I had slowed down and not pushed myself so much, would this crash still have happened to me?  Is this my fault?  I know it may seem silly to think like that, but I just wondered if anyone else here feels/has felt the same way...

Thanks for the input and support,

Kristen

<{POST_SNAPBACK}>

Right now most of my time is spent at Drs. offices. The rest of the time I am usually at my daughters house. Since the stroke my Dr doesn't want me alone until they can start me on medication again. I also like spending time with my grandsons, the oldest one wants to learn how to cook and he is doing a great job. I havent figured out what all I can do right now. But I am trying different things. I have noticed that my strength doesnt last very long so I try to do things that are sitting down. Right now I am making Christmas Stockings for the whole family. It is going slow because of my eyesight. Any ideas, on what to do with a day when you do not have the strength to get out of bed? I welcome your input. Thanks Vanessa

For most of us the spare time is all day, lol. Just wondering what everyone does.

I dont work so in my time i design graphics and websites. Im self taught and ive purchased alot of books to teach myself these sort of things. If it wasnt for the PC id be paranoid all day thinking about all the what ifs, so this keeps me occupied.

Throughout my years of self teaching ive learnt alot and gotten some work from it all. I currently design graphics for Urban Music artists and DJs who arnt in the mainstream and make about 40 Pounds per week extra money from it.

I also design websites and am currently trying to get a job working for a web company, or an apprentaship position.

Im also a bit naughty sometimes and download some DVDs, but thats to keep my head at bay when im board. I feel the computer is my lofe at the moment, without it id be stuck.

I look forward to hearing what you people do

<{POST_SNAPBACK}>

Good Morning,

Yes, my eyes seem to be getting worse too. I can not stand to be in a room with flourescent lighting, or outside with out my dark shades on. I try to read and my eyes will not stay focused, and the worse is when they gray out, it will either be totally or just the peripheral vision. It is very frustrating! My Neurologist told me that it was all part of it. When I was diagnosed with Glaucoma my eye Doctor said that he could not get my eyes corrected to 20/20, so he sent me to a specialist. That guy was a big joke, all he did was take pictures and told me to come back in 2 years. I have not found anything that seems to help with the blurring, the only thing that I can do is to wear dark brown shades in the sun and flourescent lighting. Hope you find an answer. Vanessa

Hello!

Over the past couple of weeks I've been noticing that my eyes are acting "funny."  Not only am I having trouble focusing at times (things are just a bit blurry) my eyes are not adjusting to light. 

Do others have problems with light sensitivity?  What about general blurriness? 

One change for me lately is that I had 3 migraines last week (I do get the visual aura for about an hour where I can't see well / wavy lines / etc.)

I can't really put it into words -- except that something seems to have changed.

Thanks for any input,

Lisa

<{POST_SNAPBACK}>

Thanks for responding, I do not know if any of this is related it just seems strange that I was perfectly healthy and then I was diagnosed with the Osteoporosis, and then the Glaucoma and now this stupid disease. I have an appointment for MRIs and and EMG on the 30th. Yes I was on steroids, but only after these 2 were diagnosed. and only for a short time, one for my back and then I was on Florinef. The Doc had to temporarily take me off of the florinef and midodrine because it was raising my blood pressure too much due to the pain and I ended up having a mini stroke. Our local hospital is so horrible that they treated me for a general headache and sent me home. To get quality care from a hospital I either have to go to Las Cruces or El Paso and in an emergency situation it is just too far. Talk to you later.

Sounds like Cushing's syndrome to me. Have you been on steroids? If not, your body might be making too much cortisol on its own.

Best of luck finding the diagnosis.

<{POST_SNAPBACK}>

Hi, I am new to this forum, and I do not see so well any more even with my glasses, so if I misspell a word please forgive me. My question is, Is there any evidence that Glaucoma and Severe Osteoporosis could be connected to Autonomic Dysfunction? I do not know which form that I have yet, my Neurologist wants to do some research on it and then run some specialty tests on me. No one in my family history has had any neurological problems or Osteoporosis. I am only 48 and my orthopedists said that my bones are like glass. All kinds of tests were run on me to see if anything metabolic was the cause, and he found nothing.I was diagnosed with glaucoma and osteoporosis just a few months ago and diagnosed with Autonomic Dysfunction just a couple of weeks ago. Thanks Vanessa

Hi , I know that it is scary, and frustrating when a person has been so active and then all of a sudden they can barely get out of bed. I am new to this I have just been diagnosed. What my PCP told me is to learn meditation, it will help to relieve some of the anxiety. Our medical problems may not go away, but we can help ourselves to try to cope with it. What I do is either get in a bubble bath or lie in bed with my eyes closed and I concentrate on my faith. I draw my strength from my God. and before I know it the anxiety attack is gone. I know that I am new to this being sick all of the time, but I am going to fight it with everything that I have. I am not going to let it take me over. The one thing that I think that I hate the most is not being able to enjoy a meal. No matter what I put in my stomach, I bloat up and my stomach hurts, but I am going to try different foods to see if some hurt less then others. You hang in there, and fight this thing. Make your mind strong, it is our best defense. Vanessa

Hi All,

Have known I have autonomic dysfunction for 4yrs due to Ehlers-Danlos Syndrome type 3. Also have severe M.E as well as other things. Am mostly bedbound.

This last 7mths have been ****. Have had breathlessness and trouble breathing, as if my chest is weak and I have to force myself to breathe as it feels like my breathing will stop. I get it at rest as well as on standing. Have very bad heart pounding/racing at rest as well as standing. Severe weakness, tiredness, lightheadedness. Numbness in whole body so I can't feel my body (this normal for POTS?) At times heart rate slows right down and breathing becomes very shallow and weak (mostly at night) Some nights I temporarily stop breathing and wake gasping.

For 3mths I was unable to move and was so out of it I wasnt aware of who I was, time passing, couldnt concentrate on anything anyone said to me, I felt like I was going to go unconcious. (Is that POTS?)

I am being investigated for Addison's Disease too.

Recently saw an endocrinologist who also deals with POTS, he advised me to up my caffeine intake as he's just done a trial on it and says it helps with POTs. It seems to lift the tiredness but apart from that doesnt do much else. Am also on florinef which helps a little.

Basically I'm having trouble coping with all this. On the worst days (today being one of them) I have no idea how I can live like this. I'm only 28. I can barely get to the toilet. I'm normally a very ambitious, driven person and I dont want to stay in bed the rest of my life, I have things to do!

I'm worried about the connection with heart problems such as mitral valve prolapse as I have EDS as well, the endocrinologist didnt seem too worried.

Also, can you stop breathing with POTS as my breathing side of it is bad?

Just need some reassurance and to reach out to others with this horrendous condition.

<{POST_SNAPBACK}>