lizb

Hi I live in Scotland and I was also told it is very rare. Before I was DX I had never heard of POTS and neither had my family or friends My GP actually said to me " I have no one like you on my panel and I do not know what to do with you. I was admitted , yet once again, to hospital in April this year and I was seen by 5 doctors and not one of them knew anything about POTS - yes you guessed - I was told it is very rare. From my experience, when I had a different symptom I would check the site and someone would have had the same- so for me I got all the help I needed from the people , who despite their own condition and symptoms took the time to support people like me. We in the UK are not afforded with the medical personnel that the USA has so until our doctors gain more knowledge into the complexities of this condition, we will continue to be told " it is a very rare conditon" What I do is when I am admitted to hospital I talk about is as much as I can. My family and friends are all aware of my symptoms and I made a leaflet for my colleages at work. Even my grandchildren know about my condition. I am just glad I have a very good cardiologist who DX me within three months of taking on my case. I am now on fludrocortisone and this had made a tremendous difference to my way of life. Tilly, I hope you get the support and encouragement you require to cope with what ever health issues you encounter. Take care Liz B X

Hi there, yes since I was DX I have been able to continue working full time. Last year I lost only 1 day due to POTS. I work as an adminstration assistant with Social Work Services, Children and Families Team, which involves Child Protection, so my job is very stressful. However, I 'm fortunate in that if have a POTS attack, I am able to go to a room and lie down for as long it takes for me to recover. This room was put in place by our Health and Safery Officer to allow me to lie down when ever I felt "POTSY". I am very grateful for this room, otherwise I would have lost more days off work. Take care all Liz B

Hi I am on facebook I have sent you a message. Liz B

Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? NO 2. Have you ever been diagnosed with EDS or suspect that you may have it? NO 3. Do you experience symptoms when lying down even after a night of sleep in your bed? YES 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? NO 5. Have you ever been informed by a doctor that you have low blood volume? NO 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? YES 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? YES 8. Did your POTS arrive suddenly? YES 9. Is your skin pale? YES 10. Please the top 6 worst symptoms that you experience with POTS: CHEST PAIN, NEAR SYNCOPE, LACK OF ENERGY, THRIST, HEADACHES,

Hi all, I was DX with having Small Vessel Brain Disease yesterday. I was initally told I had had a Stroke. My GP said this had nothing to do with having POTS but I just wondered if anyone had any knowledge other then what is listed on the Internet. I have an appointment with my Cardiologist in 3 weeks so I am hoping she can help me understand this condition and how it progresses. One of the problems with this disease is you can't have high blood pressure but I am on Fludrocortizone to keep my blood pressure up !!!!! I feel like I have come 10 steps forward and twenty steps back. Think I'm feeling a bit sorry for myself - tomorrow's another day and as soon as I have digested this DX I will deal with it. It really helps being able to post on the forum and say exactly how I am feeling, which to be honest I'm scared.... So any info will be much appreciated. Take care all Love Liz B xx

Hi Michelle, it is so easy when you have POTS to get the "poor me" syndrome. Six years ago I was working full time, went out dancing every weekend- I love dancing... looked after my grandchildren and more or less had a very active lifestyle. Then WHAM POTS struck I had all the symptoms as everyone else - in and out of hospital it was like a revolving door at times I thought why me? This rollercoster of symptoms went on for three years until I was finally DX in August 2006. I was prescribed Flornif and over the past three years I have steadly got better. This gave me hope that things may get a lot better, little by little a day at atime, but I had to be patient. I was able to work full time, go dancing, albeit not as often, but I can dance. But the main thing I did was I stopped feeling sorry for myself and accepted that for me it could have been worse!!! I refused to let POTS control my life and enjoyed my good days and coped with my bad days. Today I have more good days then bad so that's a plus. This is MY experience and I hope you get the strength to face your fear of the terrible condition, especially as you are so young - try and take one day at a time and have the hope that one day it may get better. Take care Liz B

Hi Waterbaby, sorry to hear you are having a rough time. I don't post as often as I did when I was first DX but I read other posts almost everyday. I suppose I'm one of the lucky ones I take Florinef daily, 1mg in the morning, this has made a tremendous difference to my life ,which is almost back to normal. I have a full time job, can walk long distances, I can stand in shops, do housework etc. I previously have posted my progress and thanked everyone for their support, especially the help people gave in the early days, which helped me find some clarity as to what I was dealing with. I do not know how I would have survied if it had not been for the support this forum had given me. I will be forever grateful to all the members who take the time to pass on their strength and hope that one day things may get better, either by, medication which could help eleviate the symptoms or by the example of others who have learned to cope with this debilitating illness by adapting their lifestyle. I hope you start to feel some betterness in your health soon, and if that is not possible I hope you achieve the strength to cope with your symptoms. My thoughts and prayers are with you all. Take care Liz B

Hi everyone, thanks for you all support, thoughts and prayers, it is very reasuring. The answer to the questions asked in a few of the posts are, small vessel ischemia is in my brain and was identified by a CT Scan. Over the past few months I had terrible headaches and when my blood pressure was checked following the stroke it was HIGH, which is very unusual for me because it is normally soooooo low!! My blood pressure appears to have settled again and is dare I say it normal ! Anyway as I said previously I am on the mend. I have changed my diet, lost some weight, and in general taking better care of myself. I do have a very stressful job, working with the Child Protection Team, which over the Christmas period was extremely hectic and I was really stressed, so maybe it was that or as I was told by nursing staff sometimes there is no reason. I receive full salary on sick leave so I intend to stay off for a few months. I am looking forward to my next appointment with my cardiologist as she was with me when it happened so I have a few questions I'm going to ask. I will let you all know if I get any answers. Take care all and I will keep you all in my prayers. Liz B

Hi all, not posted in a while, hope everyone is as well as they can be at this time. Before if I had any questions they were answered by reading others posts, which I do on a daily basis. However, I recently suffered a small stroke during a TTT test. I was admitted to the stroke unit for over two weeks, had numerous test and the care I received was amazing. I am now home and I feel extremely lucky as I was told I would make a full recovery. The tests I had revealed small vessel ischemia which was due to a lack of oxegen to the brain. The reason I was given for this happening was that my heart did not work properly at the time of the TTT test. When I went to my GP she said I had small vessel diease which freaked me out because this can lead to dementia. Has any one else ever experienced anything like this or knows if this is somehow related to POTS. Liz B.

I have not logged on for a while as I continue to have considerably good health - a few off days, but nothing compared to the way I was previously. I would like to thank the moderators for posting my birthday, which is today. I'm waiting for all my family to arrive and a year ago this would have been unbearable, but today I am looking forward to all the celebrations. I just wanted to once again express my sincere gratitude to all the members who despite their debilitating symptoms, gave me help and encouragement to keep my chin up. I wish everyone the best health they can have whilst coping with the symptoms of POTS and all other related conditions. I hope my situation might give others the strength to keep going, and who knows, you may also return to better health as I have done. I know it may not be forever, but what is - I just take each day as it comes and thank GOD for my good days and my not so good days, because without these I would get complacent and as all POTS people know - you never know when it will reappear again. For today, I am well as I can be, and once again thank you all for your help and support. Love and hugs from Liz Bxxx

Thank you all, I havn't been on the site for a long time because I have felt better and doing things that I couldn't do before. And if I were to return to full health, I would never forget the support and encouragement this site has gave me. I am so grateful to the moderators who volunteer their time and energy, which I'm sure at times was zero! due to their POTS etc. etc. etc. The information I received in the beginning was invaluable. I don't think I would be in this position now had it not been for the other members who contributed to the site. It is the sharing of members experiences that make you think - I'm not going mad, these feelings are real,!! but the best thing the site gave me, was confidence to challenge my DR's and more importantly never give up. I will continue to enjoy my good health a day at a time, and be very grateful for it because others sometimes never get this opportunity. If I do have a relapse then so be it, with the strength and confidence I have achieved over the past two years I know I will cope. Once again thank you all. Liz Bx

Hi everyone, I was DX in 2006 after having symptoms for 3 years. Recently I've been able to function really well and as time goes on my symptoms appear to have lessened significantly. I am still on 0.1mg of Fludrocortisone. I have an appointment with my cardiologist in October and I was going to ask for another TTT to see if there is any difference since my first TTT - then I lasted about 3 mins before the symptoms presented themselves. Therefore, my question is, has anyone ever fully recovered from POTS or do you have it for life? Liz.

Yes I had this feeling on Sunday, this is the first for me. I felt weird, it was like I was on a boat and I was trying the walk straight and the boat was rocking me from side to side. Liz B

This a strange, I was just speaking to my GP about this problem today. My partner is driving me mad. My children show concern, but are not overly protective. I dont' know if it is a control thing, because I have always been the one who more of less did everything, which was my choice. I just try and be firm and say " I fine today" and do what I can for that day. He does accept this but it is always with these parting words " o well just end up in hospital" and walks away. As soon as my Cardiologist has completed her investigations I am going to ask her to speak to my partner. I should say I'm grateful he does care for me but , he is killing me with kindness. Liz B

Good topic, since DX with POTS I have continued to overdo things it is the major cause of arguments in my home. But the way I see it is, if I were to sit quiet and rest wait for a POTS 'attack" to happen, which it might not!!! It would be a complete waste of my time. My friends and family say I am in denial and I think there is nothing wrong with me. But while I still have a burst of energy I will continue doing things. It is about trying to get a blance and get to know your own limitations. It 's true what works for one might not work for another. Maybe I will up my fluids but I am pretty good at taking my med. Liz B