Rita

Not much help on the eye care , but I have been through the whole sinuis issue with my son. He had allergies soooo bad he spent a week in the hospital every year until he was five, and went in and out of the doctors office and er weekly all year. One of his specialist recommended using a home made salt solution before he used his nasacort to insure the sinuis are good and opened to receive the steroids nasacort has in it. We finnally took him to a surgeon and she removed his adnoids to come to find out they were growing into his sinuises and keeping them infected. You may want to check into both of these options. Good luck, Rita s

I will ask the docs at vanderbilt for you ,but if they look at me weird I will have to explain this questions not for me ha ha ha. Th anks for the lovely question I'm sure this one will probably have them scatching their heads. Rita s

Dizzy girl, Sorry to hear that you have been feeling so bad. I have not been having insomnia, but my legs have been cramping ne something horrible at night lately. I have been sleeping with my legs weel above my head and this seems to help. On your medical treatment have you ever thought about going in for a research patient. The docs there are most of the time wonderful and want to learn rather than be so fast to dismiss. You also have to look at the advantage you give to others who share our situations. Just a thought it's not always for everyone. I hope you get to feeling better soon. And always look forward to reading your post. You are always so positive even when you feel your worst. I admire you for that. Good luck, Rita s

I have taken florinef for a little over four years now. I do suffer from severe migraines to the point where I have to go to the er sometimes because my home med imitrex did not work. I have only had a bad experience to where I had to guit it for a while, but this can be controlled by watching your weight. The experience: My blood pressure was going to high upon lying down 200/126 part was due to being sick the other was I gained too muck fluid. The docs at Vanderbilt said to watch your weight and if you gain too much too fast and or gain ten pounds more than your baseline weight cut back on your dose or miss a dose. Watch your weight carefully and this will help alot. If you see that you do gain weight like this check with your doc to see that he/she is ok with this skip cut dose style. Good luck, Rita s

Hey guys I will be going to vanderbilt for research in a few more weeks , but wanted to post early to give you guys time to let me know of any questions you may have. I will be asking about our sexual difficulties and what we can take to help us with this if anything. I will also be asking why we wake up in the middle of the night thirsty and craving salt. If anyone has any questions please let me know. I am not shy and will ask anything that can help. Sincerely, Rita s

Persephone, Nice to see your post always enjoy your questions and qoutes. When I am having lots of trouble my doc will send me to outpatient and run a bag of iv fluids. Then along with my florinef, paxil, and midrodrine, he will add a steroid dose pack and valume. I am to take the valume every time I wake up until I can stand without passing. Sleep gives the steroids time to kick in and give my body a little extra boost. I only do this when I am at my worst and can't deal with it any more. I most of the time stay in the bed through this course for a week or more. Just a liite info to you, Rita s

Chrissy, Welcome I hope that you meet many new friends on this forum and also learn from others. I look forward to reading your post and helping you cope with your life and your disease. Nice too meet you, Rita s

Pooh bear, I am not sure if we have talked before,but I am sorry you are having such a hard time. Hopefully things will start to improve. Maybe you could watch in your local news paper for a wheelchair, sometimes I will see one advertised here in Tennessee. I am sure as with most of us you don,t have a lot of extra cash, but it is better than buying a new one. Best wishes and good luck, Rita s

Michigan Jan, It is always great to here good news in a bad situation. It sounds as though your husband is also very strong. It takes a lot of strength to go through chemo. I hope that you continue to receive such wonderful news. You will be in our thoughts and prayers. God Bless, Rita s

Rachel, I would like to welcome you and let you know it is always nice to meet new people. I hope that we will be able to help you through support in good times and bad. The people in this forum are always open minded and ready to listen or pitch in for advise when available. Welcome, Rita s

I am so sorry to hear that you too have been diagnosed with pots!!! You may want to check on the net for docs located in your area. Texas is a really big place I am sure there is someone who can help. You may also want to send one of the brochures of this website to your cardiologist. It is very common for docs not to know about this disease. hopefully this will change in the future. Hope I helped some, Rita s

Persephone, I am so sorry you have had such a hard time. The cardio doc seems really nice; however, I think I would try and locate someone who has some knowledge on pots. I know this is also very hard, you might even want to send this cardio doc the pamphlets that are new on the forum, or maybe print as much info on pots as possible and give to him to teach him about pots. If he is indeed a good doc you will know because he will use this info to educate him. Maybe this would be a better alternative , because I f he is caring you will have yourself a wonderful doc. Good Luck, Rita s

You can look at the forum section title all you aspring writers and this will give you many of the stories from the people on this forum. Good luck with your paper and your senior year. Rita s

Slowing down is often a lot easier said than done. I know there are days I would love to just be able to go outside and sit and watch my kids for a little while. To me that is slowing down, but I can't even do that any more. Sometimes I feel like slowing down is not really the answer, so I try to go out and be normal, except then I begin to pass out and find myself in the bed for about a week and a half. I sometimes feel like instead of slowing down we almost come to a complete stop. I have noticed in the winter months I do feel a little better. I get to go more. although in the winter I most of the time get sick and this makes my symptoms even worse. I know exactly how you feel tired of being tired and having to stay inside out of the heat. Making sure that eat enough salt for the day and drink plenty of water. I do everything the doctors tell me to do , yet I still have troubl just taking a bath or trying to clean the house. Before I was diagnosed and a couple of years after I was still able to clean and cook and take care of myself and family. Now I spend more time doing nothing and receiving help from others, and then only thing I want is more energy. This is so hard for any one to deal with, but having everyone on this forum seems to help. I wish that I could give you more positve news, but so far I am still having trouble dealing some days myself. Best Wishes, Rita s

I have been dealing with oi and syncope for a little over four years now. I was first diagnosed when I worked in an office setting. I had episodes before this , but tried to hide it from everyone because I was scared. Then one day I was at work and began to have repeated episodes every time I tried to stand. I went to my doctor and he started to call for test. A few days later when nothing stood right out in all of his test he told me to go see a phycologist. Knowing nothing was wrong with me mentally I drove straight to another doctor. This is when she called for a tilt test and I was fist diagnosed in 2001. Things became very complicating for me trying to work 40 hrs a week. I finally quit my job because I was spending more time at home than work. I went to work only part time on weekends. After that I had to reduce my hours down to ten hours a week. Now I can't even seem to work them without passing out a few times. I discussed filing disability with my doctor ( for four years ). When it come time for her to fill out the paperwork the only thing she could come up with is I had trouble standing ( maybe ) and I had trouble with hearing and seeing. I could not beleive this she is the one that has drove me home put me in the hospital for a week and called for more test than a person could ever imagine. How could she atend and collect money from me so much if she really feels there is nothing wrong, but maybe seeing and hearing every know and then. I have switched primary care docs now, but it still doesn't make me feel any better with the treatment I have received in the past. What is a person suppost to do?????

Deb M I was just reading your post and I t reminds me of what I deal with when I see the nero docs. The only difference is they admit that I have an autonomic dysfunction, but for some reason they don't want to help as afr as treatment is concerned. They always tell me to stick with the cardiologist. I really don't know why I always thought that autonomic meant something wrong with the brain not the heart. Sincerely, Rita s

Sorry I can not really relate to what you are going through, although I wish you the best of luck with your cardio doc. When you finish with your findings please post so that we all can learn and make your bad circuamstances a little more positive by being able to teach others something new. Sincerely, Rita s

Jennifer I am sorry to hear that you are having so many problems ,but I would like to welcome you to this forum. I have trouble with my heart rate change and going to high upon standing, although when I am lying down I am the oppisite my heart rate goes really low ( in the 40's ). When my heart rythm goes to high I will most of the time pass out. I am not sure of how to fix this. I do take florinef but would like to warn you , watch your blood pressure very close and watch for to much weight gain. Welcome, Rita s

SALLY ANN It is always great to meet new people. I look forward to reading some of your thoughts and ideas and getting to know you and your daughter. Welcome, Rita s

Some of the doctors have discussed that I get a pacemaker; however the eletrophysiologist says that I am too young and the risk sometimes out way the benefits. I am not so sure that I would really want to have one unless there was no other choice. My medical bills are already high enough. I would discuss the possible benefits verses the risk before I would receive one and then use your own judgement. From what I have read they really don't help with ncs. On another note I also thought my ncs was caused by my blood pressure , but after checking my blood pressure and heart rythm lately I have noticed my heart rythm changes alot more often than my blood pressure. I do this by checking my blood pressure sitting for 10 minutes, then standing for 2,5,and 10. This is how they do it in research and they also noticed this with me. They actually think that I am having trouble with orthostatic intolerance rather than ncs. I f you look up oi you will see that syncope is a side effect from this. I hope that you find something that will help you I will be posting the results from my study at venderbilt of what helps me toward the end of September. Good Luck, Rita s

Dizzy Girl, It is not often for me to crave salt this is something I have never enjoyed, I literally have to force myself to eat on everything so that I get in enough daily. I do often wake up in the middle of the night dry mouthed and dying for water. I have noticed that I will do this more often when I have had many syncopal episodes that day. I am not sure the connection between this, but I will ask the research team when I go back to Vanderbilt. I go in September so I will let you know when I get back. Rita s

I have cold hands and feet sometimes and then again sometimes I get terribly hot for some reason . Paxil does help me alot as far as not freaking out over little things and coping with day to day stresses. I am not sure that it will actually help with coldness. I think this is more of cirrculation trouble, because I have noticed when my heart rythm is slow I am often cold;however, when my heart rythm is fast I get really hot and miserable. Hope you get to feeling better, Rita s

Sue, I hope that your neice's recover is fast and simple. My heart reaches out to you, you are in my thoughts and prayers. Thinking of you, Rita s

sorry to hear that your not doing so great. Unfortunately pots is not something that most of the time just goes away; however , you do go through times that you feel pretty good. The most important thing is to learn not to push yourself when you do feel good. Try to keep in mind that feeling good with this disorder is a blessing and does not always last that long. I actually go through spells to where there are days I can't even move my eyes without feeling like I am going to pass out. So when I do feel good I remind myself I still need lots of rest so maybe I can hold on to the good feeling a while. Things that help me : Make sure I don't get too hot, Take a nap in between things such as when you get home from work and doing your husbands paperwork, Drink plenty of water and try too avoid caffeine, Never have too much pride too ask for help............ These are just a few ways that help me too stay on top of things. Make sure you do rest every day this is the most important, I take a nap daily and If I miss my nap I can tell a huge difference. I know It probably sounds crazy for a nap too be so important to an adult, but this gives your mind time to rest too. Hope things get better for you!!!!!!!!!!!!!! Best wishes, Rita s

It is very nice to meet someone new, eventhough the reasons we have for meeting others is really not a positive reason. Ican think of sort of a positive reason though if we had never gotton this disease we would have never received the chance to find such a great friendship between each other on this forum. Just the same we could of really all just met for the fun of you guys. I hope that in this forum you find the same kind of friendship that has been offered to me. Everyone I have met so far has always been so open minded and not insulting. I wish I could say that for some of the treatment we have received. Nice to meet you, Rita s