Rita

Being a mother it is our job to worry. Sometimes as young adults we forget to look at the possibilty of things. I am sure your mother just worries about you going alone. The world isn't as safe as it used to be. People now days kill you just to join a gang or to see what it feels like. I know that it is difficult to understand , but your mothers greatest fear would be losing you. Kepp this in mind and be careful on your journey. Rita s

Dizzy Girl I don't have an appointment , but I wanted to wish you good luck to yours. Let us know how things turn out. Rita s

Lois it is so great to hear that you are toughing right through this. Keep up all hopes in your battle. I will keep you in my thoughts and prayers. Great to hear that your daughter is coming for a visit. Maybe you can pull out some old scrap books and remember the days. Hang in there. Rita s

My legs seem to cramp me alot at night and sometimes my arms and hands will tingle. The doctor told me to drink tonic water , but I haven't tried it yet. Maybe we will be able to fix our bodies someday. Rita s

Hey Stace just wanted to take a moment and welcome you to the forum. I think that everyone here has tried just about every kind of med possible and none of us have our symptoms disappear. To me if I can just get through the days without passing out I have comfort. I look at blackouts as part of my daily routine anymore. I hope that you can find something that will help you. Welcome and good luck, Rita s

Not sure about the med , but wanted to say congrats on the good news. I hope the med helps you out!!! Rita s

I have these headaches quite often, I refer to them as moving headaches. I also suffer from migraines and associate the pain right in there with migraines. I do take florinef and have just started propranolol wich is suppost to help with pots as well as migraines. So far I have not had any headaches in 4 days wich is a major plus for me. You may want to talk to your doctor and give it a try. Rita s

Dizzy Dame just wanted to send you a . I hope you get to feeling better soon. Rita s

Dizzy Girl, If you don't get to feeling better I don't know what we will have too do with you. I understand your worries, it sounds like you would have some kind of blockage. They have 30 day event monitors as well as 24 hour event monitors. I would definitely ask for the 30 day to make sure they get a very clear picture of your heart rate. My heart rate does not go that high it most of the time only goes up to the 140s, but ut starts out in the 40s sometimes even 30s. It is most of the time my blood pressure that goes up when I am resting 200/126 and down when I stand 80/60 sometimes even lower when I pass out 50/30. I do agree that everyone in our situation needs help at times I know how hard it is to think we have to realy on others. I am also very independent but I have learned when too say I need help. Getting the help we need means that we can also get the rest we need and they will help you to feel alot better. Ihave learned that I have too nap everyday for at least 2 hours and this helps me get through the day. I hope you get the help you need , and let me know if there is anything I can do. Meanwhile you will be in my thoughts and prayers. Best Wishes, Rita s

It is very normal for us to wish that there was a cure. I know that no one every wants to hear they have pots , but at least they have a diagnoses that makes sense and they can help your symptoms more so than without a diagnosis. Good luck I hope everything goes GREAT FOR YOU!!!!! Rita s

Just got back from vandy and had a lot of trouble with my veins they did not act as though this is related to the autonomic trouble though. They did not have trouble sticking although they did say my veins were small, they had trouble drawing blood and had to use heat to incourage blood flow. After a little while they would colapse and they would have to restart ( what a dud ). Rita s

Roomie I am so upset for you and feel your frustartion. Have you talked to Bonnie to see if there is anything they could do to help? I was so totally afraid you would do this , I HAVE ALREADY BEEN THERE AND DONE THAT. I was only trying to go part time though and still end up in the hospital for a week and out of school 2 weeks. I am not sure if you know this but Dr Raj says that stress complicates our problems even more. Please let me know if there is any way I can help. lylas, Rita

Bearing a child is always a wonderful feeling. I guess the question you really need to ask is are you willing to take this chance. The doctors I am sure will support you in your decision. Not trying to discourage but you also need to consider the care you wil be able to give this child with pots and already being a mother of two. Sometimes extra stress can make things worse as well as when you feel bad you will have to have extra help. I wish you the best in your decision and can tell you that dealing with pots and parenting a baby is difficult but to me it is all worth it . Good Luck, Rita S

Hey guys I got back from vandy and things went pretty well. They diagnosed me with pots and oi, I was diagnosed with vasovagal syncope and oi. I was under the care of Dr. Satish Raj he was really friendly, we even discussed kids cartoons together. He has a 15 month old and I have a 18 month old. They started by doing med trials with me and I did really good with at least 4 different ones. After the med trials they did blood volume testing, mri ( more advanced than normal it even monitors your brain function and you have to go through mental testing during the test ) , and some pain testing. Things were ovre all really great and the nurses were spectacular. Anyways here are the answers to your questions and if any one has any more feel free to ask. 1.) What causes cravings for salt and water: Dr Raj feels that we crave this due to the lack of our bodies ability to obtain it. He says we should consume plenty of water during our meal along with salt consumption. He says that one without the other and they will not work. For example: if you just eat salt there will be no water to obtain and if you just drink water it will go straight through you. 2.) My legs cramp at night when I lay down to rest at night, but it is not my potassium levels. What can cause this and what can I take to help with the pain: He is not really sure what actually causes this, but says that he tells his cardio patients to drink tonic water for there leg cramps and this helps them. 3.) Other than beta blockers is there anything that can help with low blood volume and heart pounding after eating: He says that beta blockers do not help with blood volume, although it does help with heart pounding. For the low blood volume florinef or fludrocortisone is neccessary. Fluids can also help with low blood volume. 4.) The autonomic system sometimes effects libido why: He does not have any proof that this is the cause he says that it may be related to our fatique and some meds. There was nothing he could give to help it other than try bottom positions more. 5.) Can or does the lack of oxygen during syncope events cause slowed brain function and or damage to the brain over time: In syncope no, but in pots he says that it does affect our concentration and memory. 6.) Is there any at home 24 hour blood pressure monitoring at home: Doctors can call for a 24 hour ambulatory monitor, although unless neccessary Dr Raj disgourages this because he says that sometimes you find out more complications that never really bothered you before and could make you more aware and therfore it would bother you more. Kinda like the saying what you don't know won't hurt you. 7.) Is there any need to see a nerologist: When dealing with pots and syncope no, this is like your power going out and you call a computer technician to fix your computer, of course he will not be able to do anything because there is nothing wrong with your computer. Sometimes you may need to see one if you have migraines and or other problems though. You should see a cardiologist for pots though. Well there is a brief little over view if you have any questions let me know. O h yeah bye the way my new meds to try ar florinef 1 time daily, paxil 1 time daily, and propranolol 3 times daily. If this does not help they are going to add another med or so. Yours truly, Rita s

It is sad the doctors tell you that they just don't know, but it is great because they didn't just tell you that your crazy. To me this would be great and should really say alot to you about the docs. I know it is really hard to see smething positive at this time, but it just depends on how you look at it. The saleine solution does help as well as steroids. Good luck, Rita s

Persephone giving up is not you solution. Trying to make adifference is however. It takes alot of people to make the world go round and knowing your personality it is a shame there is not more like you. I have had trouble with my blood pressure going high , but mine went up while I was lying down 200/126 and would bottom and I would syncope when I stood up. I am not sure what other meds you take, but sometimes meds can cause this. It is very dangerous for the bottom number to get above one hundred as this can bring on a stroke. This may also be caused by pain with me it was because I was having repeated migraines and imetrex wasn't working. They had to give me demoral and phenegren. After a week in the hospital they had to let me go home , because insurance was refusing to pay. Evan though I went home I was still unable to get out of bed or walk on my own for quite sometime. So I guess you cen say ( I feel your frustration grrrrrrrrrrr!!!!!!!!!!!!! ) . Just don't give up the answer to our torture has to come eventually. Always caring, Rita s

All of the family's affected by this storm will be in our thoughts and prayers. It is so great to see your care you have for these people. It is very difficult for many at times right now with the economy being so bad let alone having to deal with storms. I can only pray for these family's as will many and help is on the way for them. God Bless, Rita s

Persephone, You sound as though you are a pretty reasonable person. I could never move far away as I am a home body. When I am sick I won't even try to leave the house as this will worsen things for me. If I did have to move in with people I did not know. I would probably type up a letter that states a little bit about me ( of course you would want it to be about you ). Go ahead and lett your new room mates the type person you are, let them know about your medical condition, and of course finish up the letter saying how you are looking so forward to getting to know them. This will help address your worries and maybe even make everyone feel more comfortable. I think you will be just fine you have a great outgoing and caring personality and this will take you a long way. You may also want to check and see if there is any help in the area to help the disabled. Sometimes they will help with transpertation needs. Good Luck, Rita s

Can't really relate to the neck pain , except maybe when I sleep on it a little strange. Just wanted to let you know I was listening and give you a get well soon wish. Best wishes, Rita s

It is always great to see someone new to the forum, although the reason for being here is not the greatest. I would just like to welcome you !!!!! It is wonderful news to hear that you have doctors who know about dysautonomia. It is very rare to find doctors with this knowledge so I am soooo proud for go! Nice to meet you, Rita s

It is always great to hear that someone is learning about pots. If we could just continue this we may someday be better understood, and not told we are having a panic attack. Great news you go, Rita s

Thanks guys for the questions. Thank you sunfish for also showing your great caring personality. I will make sure I put me first and put any other questions second. It is also helpful to me for others to mention there questions, as I may have forgot one that would be very important. Thanks again, Rita s

I have trouble almost every night with leg pain. I do have fever sometimes , but it's not real often ( mostly if I am coming down with a cold or sinuis infection ). The best thing to help with the leg pain is to prop your legs well above your head. I do it by laying on the couch and putting my legs up on the back. Give it a try and let me know if this helps. This is also something I plan to ask about at Vanderbilt. Rita s

Dead ends are unfortunately things that come with the terotory. I hope that you can find and receive the best medical treatment neccessary. It it very hard to accept the things we cannot change, but we still must go on. Try to focus on the positive things in your life , youe may even want to try and write them down. This helps me sometimes. I also look at old school pictures, or pictures if my kids when they were younger. Anything that will help get the bad news out of your mind a little bit. This will help you to releive some of your stress. Always remember we are also here for you, Rita s

Soooo happy to hear your great news. Ihope things keep going so great for you. It is always great to hear good news. Congrats, Rita s