maggie

My onset of pots came one very quickly just as yours. I was bedridden for six months and needed full time help. My one daughter came back home and she helped during the day and my husband helped at night. Slowly I regained my strength and began to be able to take care of myself. I let my daughter and husband watched on the sidelines while I exactly did what needed to be done so that they could see for themselves I could manage. I finally told my daughter I was forever grateful for her help, but it was time for her to have her life back. She found a job and moved back to her house three months later and now I have my independence back. Even though I have my own pool to this day by doctors orders I'm not allowed in it unless there is someone there to monitor. I can understand how that could upset your family. Show them your independence and then thank them. Don't look at this issue in only you insight but also from your family's perspective. I know my daughter and husband had a very difficult time leaving go, but in the end theydid. Hope you can work something out that works for all. Maggie

My doctor and I are working together to help me in this area. I always wear a polar heart monitor while I'm active. First thing in the morning when I get up I put it on. If it's high I know that I will have to keep my exercise to a lower level. Some days as I drink water my heart rate will go down and get steady. Then I am able to up the exercise. He has mapped out a program for me. When I started I wore a podimetor and was able to walk 3000 steps per day, most days. He didn't want me to increase this until I could do it three times a week for a month. Then I could up the steps 500 per day. His motto: is slow and steady. His reason is we do our bodies no good by over taxing it and then having flare ups. In six months I was up to 5000 steps per day with little flare ups. I live in Florida so it's too hot out now to be walking so I bought a recumbent bike and now I ride between 5 to 6 miles a day depending on where my heart rate is. I'm not able to ride every day, but most days I can. I find this is working out well for me between the heart monitor and the other devices it takes most of the guess work out of what I am able to do that day. Maggie

Hey Jana, When I read your post it just touched my heart. You have always been such a wonderful support to all of us on this forum. During this difficult time I am hoping others close by will step up and lend a hand. I have read on this site a couple of times how others who have gotten better don't return to the site. Now that they are better they have moved on. I for one pledge that if I should ever get well I will "pay it forward" and help those who are still in need with this type of disorder. I so wish I lived close to you so that I could not only help with words but deeds. It is my sincere desire that others on this site will follow this path, knowing how difficult times can get when one is ill to lend a helping hand. Please keep us posted as to both of your health issues many on here will be remembering you either in prayer or thoughts. Maggie

My doctor wanted me to try mestinon, but when I did the research on the drug I kept reading how hard it was to get off the med. When I read this and for other reasons as well I decided not to try this med. So you're not going crazy many others are having problems with this med as well. Maggie

After getting my dx I cried for six months while trying to get my head around this snydrome. Now three years later I have learned patience, compassion for others, and learning what is really important in life. I miss my health and freedom to exercise, but through this I have learned to do improve my passion for quilting. I still hope I will get better, I do see improvement slowly. I have really learned how to give my needs over to God. Before pots I would say these words, but now I have to really give my health over to God. Maggie

I tried acupuncture for my pots and it didn't work out at all. The first time I had only eight needles and I felt light headed right away, within minutes. I was able to drive home but felt sick for at least three days. It did drop my heart rate but I finally figured out it dropped my blood pressure as well, way too much. I waited two weeks and went again, this time only four needles. I didn't get as sick, but this time I watched my blood pressure and it dropped before I even got out of the office. It might work for some others but not for me. Maggie

ramakentesh How do you know that mestinon is only good for partial peripheral neuropathy? What is partial peripheral neuropathy? Where did you get your iformation on mestinon? I would be interested to know because my doctor wanted me to try this med but after I researched it I didn't like the side effects that I read about. Thanks. maggie

I was dx in oct 06 with pots, my heart rate went over 170 in 6 min on ttt. Since then I have been dx with a liver enzyme problem and can not take any of the meds that they usually give patients with pots. I am living with this disorder without meds due to the fact of my liver so it is possible to get through it. Although every person has different issues. I am able to use xanax to help me sleep and if I need it during the day to calm my adrenal glands. I also have found and herbal to help with my adrenal glands as well. I wear a polar heart monitor all the time when I'm up moving around to keep track of my heart rate. When it gets too high I sit down and put my legs up so that my heart rate goes down and when I have let it settle for some time I am able to get back up and walk around some more. The neurologist I see doesn't take my insurance so he has reduced the price for me, but really all he does is monitor me and I only see him twice a year. Hope you can find a solution to your isssues. Maggie

Deb I also was dx with mild pots and was told it would take 2 to 5 years for it to go away. I'm now on year 3 and although Ican do more now then when I first got it I am starting to wonder will I ever be well again. I don't think the doctors can predict the outcome of this but give the person the best options in order to keep the patient with a more positive attitude. It did help me to hear that at first,but now as time goes on and it's taking longer to get well it does bring one to have second thoughts. Naturally I was hoping in 2years I would be well maybe by year 5 I will be well just need to be patient. I hope all goes well for you and I sincerely hope those who do get well would stay on the forum to cheer the rest on. Maggie

"I don't think Mayo would be helpful to you....you already have a diagnosis. Your local specialist needs to understand that Mayo clinic isn't any better at treating this in most cases than he is. That's because it's trial and error. Mayo clinic doesn't follow patients (for the most part) so all they will do is prescribe the top meds that tend to help people the most and tell you to try them. Your own local physicians can do that. Get copies of the journal articles that discuss the medications that are tried for folks with these conditions, read this site and other dysautonomia sites and get your local Dr to start prescribing trials." This is the answer to one of the posts. It breaks my heart to come to the realization that is this what we are to expect for treatments? That the patient is to bring in data to a doctor not trained in the area of our needs and ask this person just to try different options and meds on us? Don't we deserve to have a doctor who has knowledge in our disorders? Do you know of any other field of medicine where this type of treatment occurs? Does one go to a doctor with cancer and is asked to bring in all the information they can find and then the doctor will try to see what works? Have I been in never never land assuming that I would be able to find a doctor that would actually have knowledge in this field and be able to treat me? I ask of you on this forum are my expectation too high? Maggie

I was dx with pots in oct 06 at jacksonville Mayo by Dr. Cheshire. I had my first consultation with him after seeing a cardiologist to rule out heart problems. The heart dr told me at the end of testing I most likely had pots and sent me over to Dr. Cheshire. Our first visit went very well. He told me he couldn't get me in right away so I had about three weeks between visits. He instructed me NOT to do any research on pots {I had never heard of this} on the internet, too much wrong information on the subject. If I indeed had it he would take the time to fully inform me on what I needed to know. I did like he said, came back for the tests and was given the dx of pots. I had my consultation with Dr. Cheshire to go over the results of my tests. He gave me my results and that was the end of the session. Since I didn't look into pots before the visit I was totally unprepared to ask any questions. I was so confused and angry that he didn't follow through with any information about pots or treatments. After I calmed down in a day or two I called back his office to get some information and he wouldn't even talk to me. His nurse stated he referred me to my primary doctor. What does he know about pots? This is just my story and Mayo told me they don't treat pots at Jacksonville. I would be very interested to hear how your visit goes and see if you get a dx and if they will treat you. I got excellant care at Mayo, all doctors work together to come to the conclusion of what is the problem, but not after care, what's up with that? I am now seeing a neurologist in Sarasota who has never treated pots. I am a "patient of interest". The only reason he took me on was he has a friend who works for Mayo so if I have problems he can call his friend to find out what to do. I hope you have a better experience then me and if you find a doctor that treats pots here in Florida I would really like to know since I also live in Florida and could use the help. Maggie

I was dx with mvp in the beginning when I started having symptoms of pots. Mine is so small the dr said it couldn't be the cause of my heart rate going up so high. I was under the impression that anyone who had pots had mvp, but I could very well be wrong. Maggie

I live in Florida and have pots. I have had it now for three years, although summers are hot I have been able to deal with it. I did get my dx at Mayo, Jacksonville, but they do not treat pots there. I have contacted all the medical schools here in Florida and not one treats pots. I have found a neurologist in Sarasota thas a friend who works for Mayo so I see him and if we run into a problem he just contacts his friend. Dr. Thompson is on the list for Florida and I did see him once and although he himself has dysautonomia issues himself there are times when you have an appointment with him and he's not there because he is ill himself. There are good references on this site for Dr. Thompson so you would be the one to make the call on that point. I don't think there is any great area to live when you have this type of disorder. I do think having the sunny warm weather helps not get so down and am usually able to get out most of the time. Good luck in your research, hope you find the right place for you. Maggie

Although I am not a fainter with pots I have had boughts of crying spells. While doing my ttt when my heart rate went over 150 I started crying although not in pain or scared. I looked at the tech and ask what's this all about. The tech informed me that when the heart rate rises over a certain rate crying is a normal reaction for some. I felt kind of foolish strapped to that ttt table sobbing like a baby! As long as they kept me up the tears were falling. Not untill they lowered the table and my heart rate went down did the tears stop. Hope this helps. Maggie

This is an interesting discussion. I have always been a healthy person. Not until age 52 did I start having symptoms, high heart rate standing, you know the usual stuff. I went to my intern and started running tests couldn't account for heart rate, started med, I got sick. To make a long story short after seeing five different dr no one knew what I had. I have a classmate that works for Mayo and gave him a call. He got me in the Mayo here in Florida and withing three weeks after testing I had my results, pots. The dr couldn't believe I could get it at my age. If it wasn't for my classmate I don't believe I would have ever gotten in Mayo so fast, maybe not at all. It took me 10 months to get my dx. I am realizing how unusual this is, to get dx so quickly. They don't treat pots at Mayo in fl so it is very difficult to find dr to help me. I finally found a young dr who was willing to look into this and he also has a close friend who works for Mayo, so he was willing to take me on as a "patient of interest". When the disorder is so unknown and not many have it the funds are not there to encourage research for this type of issue. Life isn't fair but what is one to do? I am now 55 and have seen improvement with my condition, but I sure would like to get back to my old self. Now I'm startng to wonder is this wishful thinking? Maggie

As a person who has pots I can relate to all those who have responded. My comment on this topic is; my emotions are one of envy and jealous of those that have the freedom to continue on in life without the difficulities we face daily. Are envy and jealous feelings the same as angry and resentment I don't know the answer to that question? As I thought about this topic I began to realize that most to all people have these same feelings only in different areas. For example; some people are heavy and get angry at those who are thin, those who feel they are plain looking envy those who are beautiful, those who are poor are jealous of those who have wealth. Do you get where I'm going with this? We are not the only ones having to deal with these feelings, I believe most do. In light of this as a group of people with a rare disorder we are not the only ones out there with troubles, most others have their own disorders to deal with whatever it be. My hope is that this group will rally around not only each other, but all those who are facing difficulties. May we spread hope, compassion, understanding, and a listening ear to all those who need a friend. Maggie

HoudiniCat I was very greatful to see your post on this topic. I also was impacted with pots suddenedly only 7 years older then you, 52. I too was bedridden and have improved, but not as fast as you have. I wear a pedometer everyday and started out at 3000 steps per day. In the last six months I have gotten it up to 5000 steps per day. I know it must discourage some on this site that some are improving while others are getting worse, but I believe we all need to read the success stories as well as the struggles. It is my hope that those who have improved will stay around and encourage the others and help those who are not seeing improvement. I now have had pots for 3 years and pray I continue to improve. Only by comparing all stories will we be able to help drs help us as patients begin to understand this disorder. Maggie

Thankful I'm sorry to see your dreams crumble, it' so hard to give up on things we would like to do in our lives. I'm glad you received your answers sooner then later. Try not to take it too personal. All of us here on this site have had to give up so many activities that others take for granted. I don't know about the others on this site, but as I loose more of my physical abilities I dream more. You might not be able to foster but don't let this stop you from looking to find another area you can contribute to. Maggie

Thankful Before you jump into the process of adopting a special needs child I would suggest you try fostering first. My husband and I fostered children for 10 years, before pots and no one could ever discribe the situations we would be put into. Some of these children were so emotional needy and had such difficult issues that they were dealing with that as a normal parent one would not know how to handle some of these kids. We worked through a private organization and they had medical staff on hand to help us during the struggles, but some children were so hurt it was almost impossible to help. One goes into these situations with such good intentions but until you walk the walk it certainly is difficult. I'm not trying to discourage you, maybe this is a gift you haven't uncovered as of yet, but beware the road is hard. Before our first foster child entered our home I prayed the Lord would give us a child that would start us off on this road on a positive step. He answered our prayers. As the years progressed the cases grew harder and more difficult as we went, learning more each time we would have another child enter our home. Our prayers are with you on this journey because that exactely what it is: a journey. Maggie

I want to quick thank all who answered my first question in regards to how many older people with pots on this site. The replies I received were so supportive. I have noticed that some who post write about working. I am amazed that there are some who can work with this. I was dx in oct 05 and still don't have the stamina to work. How many on this forum can work? Maggie

hey potsgirl, I love the idea. It would give many of us something to look forward to. Maybe somewhere in the middle of the states so that all would not have to travel too far. I believe the more we could get together the better the meeting would be. If we did it by regions I think the groups would be so much smaller and many of us wouldn't be meeting one another, but if that what others wants that's fine. Maggie

I looked at this utube site and watch the video of the dr from mayo. My question is while on this site I also saw a video with a picture of a little baby and I believe it was from this site dinet. Now when I went back to the site I can't find the video that I first saw. I was so impressed with it that it brought tears to my eyes. I would like to view this again, but can't find it. Please help! maggie

I lived a very normal and healthy life until the age of 52. After a hurricane in nov 05 I was helping my daughter clean up her house and after that started having panic attacks after exercising. Consulted drs, all who said I was nuts and needed to be on meds. Took the meds and got very sick. Finally one dr told me to put on a heart monitor and just making a bowl of oatmeal in the morning was giving me a heart rate of 130, that got the dr attention. After several misdiagnoses I recieved my pots news in oct 06. Now three years later I am getting stronger very slowly and hope to beat this disorder one day at a time. Maggie