Ling

My heart bleeds for you I know exactly were you are coming from. What I am going to say is hard but true. All the strength you require is within yourself. None of us have it easy. I don’t know how I make it through the day at work or how I get out the bed in the mornings, but I do. Damit fight this rubbish and fight it head on. Don’t let your body win, your mind is much more powerful than you realise. I know what you are referring to about your husband. I recommend that you start with yourself first and everything around you will change. Do some research and find a local Doctor that is good. I am lucky to have a brilliant doctor at the moment. But it did take nearly 10 years to find her. We have no cure or miracle medication that will help you. But you can decide to accept your body's nonsense and go on with life. I can’t even play ball with my dogs, at the age of 26, that’s pathetic. I was on medication for depression for a few months. It is not a sin or something to be embarrassed about. Think about it I promise they work and when you are ready you can leave them again. My brother died of depression, don’t give up. No one around you is going to help you feel better, you might experience slight improvement if you lucky. Decide today to be the beginning of the rest of your life. I have changed my attitude and you know people around me actually comment that I look better. The joke is I have a smile cover all the same problems as before. For me the best medication was my change of mind. I have 5 diseases that all are link in one body having fun every day of my life. I refuse to give up. Just take one day at a time. You obviously have an amazing sister ask her to help you and support you thought this. Read Psalm 23 over and over again, until you get it. The more you read it the more you understand. Thinking of you!

I am so happy for you and will keep you in my prays for the next 9 months. Please keep us all informed about your pregnancy we would love to share this wonderful time in your life with you. I have also been advised not to have children. But go for it and look after yourself well over the next 40 weeks of your life. Follow your heart is the best advice I can give you. You will know what is right for you and the wonderful life growing in you.

I use to have the same problem. I went and saw a Urologist and had my bladder pipe stretched. HURTS LIKE ****. But it is worth it I don't urinate as frequently and don't have infections anymore.

I don't believe I will battle to fall pregnant at all. It is the one part of my body that looks normal. My doctor has advice me to not consider becoming a mother. Due to all the physical challenges my body gives me. But you must remember we all are very unique with very unique problems. I have 5 diseases and this makes it a little more challenging. I am prettified of leaving my blood pressure tablets and pain tablets. I don't know how I will make nine months with out Brufen. This morning alone I had so much pain again, I could not stand on my feet. I wish you the best of luck and a wonderfully healthy pregnancy. My the Lord bless you with a beautiful, healthy baby! Just take one day at a time and see what happens. Once you pregnant you can't turn back. Find a educated caring doctor and just pray!

My blood pressure gets very low and on a good day will be 110/70. The lowest recorded for me is 60/40 still standing. I can easily have a blood pressure of 80 or under and I still standing. The doctors normally says its very low and that's it. I take blood pressure tablets twice a day and it still stays low. I have had this problem since I can remember. Someday I feel drunk it is so low. Like I have had a bottle of wine for breakfast. The worst is when you walk and look drunk. Have that at least once a week.

Dear Sue I know exactly what you are going through. I gained 12 kg in total from the Florinef that I was on (3 1/2 months on Florinef) Six months later I still can not get rude of the weight. I literally grown overnight with the Florinef. It make your body retain water and I looked like the oros man. My face was the most swollen and it kills your spirit. I have tried reducing my kilo intake to 5200 a day. This has not even worked. It did not go away when I stopped the Florinef either. The weight seems glued to me. I am just glad I was not on it for longer. I would be much bigger then. People don't understand what it is like to be thin your whole life and then wake up fat the next day. The swollen has stayed and someday I can't wear my wedding ring. You must decide what to do. I left the Florinef due to the horrible side effects I was having. I can't take most medications anyway. Good luck I know how you are suffering at the moment.

I am so envious of your exercising. I use to exercise everyday until I got very sick. Just enjoy it and do what your body can handle. I dream of being able to exercise again. One thing I did find funny when I exercised was I never ever got stiff. No matter how hard or long I exercised the next day I was fine. My heart use to go crazy when I exercised and I had to stop due to my heart eventually. I use to pass out to much. Passing out on a bicycle is not fun when you are tied to it. I am on a beta-blocker now and my heart is slower but I can't exercise anymore. Some days I cant even go for a walk. You are very lucky, enjoy you riding!

I had a glass of wine the other day for the first time in over a year at least. And I definitely can say I wont be doing that again. I have not felt so bad in a long time. The wine made me feel terrible, the next day was impossibly long and I wasn't worth much that day. But see what works for you. And have a glass of wine for all of us how cant join you. Cheers!

I am just worried about one comment you made about the birth. Your next baby is on its way and you are going to try natural again. I have been advised that if I fall pregnant that I could never have natural birth. To much pressure on the heart. And I could never have a epidural either. I have also read about this and I know I would never have a epidural. It works directly with out nervous systems. Like we need more help stuffing this area up in our bodies. Please read in to this I am worried about you! I dont want you to worry, but I also dont want you to not know. Just read up more about this, my doctor is very nervous and I am not even pregnant yet.

My heart bleeds for you and I understand exactly what you are talking about. I don’t even want to think about my list of diseases anymore. I am standing on 5 diseases at the moment excluding all the other doctors’ opinions of what works and what does not work. I use to get 3 to 4 migraines a week. I would get a solid one for days on end. I understand exactly what you are talking about. I don’t get migraines anymore and only bad headaches. Dry to determine if something is not trigger the migraines. For me it is sugar, and there is sugar in everything. I am so sensitive to sugar that I can't even eat tomato sauce (sugar in). The body temperature problems are typical to Pots. Our body battles to regulate its temperature. I am having fun lately with the heat. It makes me terribly nauseous and I want to pass out if I am in the sun for a short while. Just get use to it I guess. Magnesium tablets work fantastic for our sleeping problems and heart cramps. I get very bad heart cramps and with the magnesium it helps a little. But I enjoy my sleep being a "little more normal" I am so glad you are on the site now. So many of us have not had children yet and will need all your advice. You obviously have a master degree in pregnancy by now. I have been advised to start as soon as possible by my Gyny but my doctor has advised me to think about it very serious and others have advice me to rather not have at all. Well we will see what God has planned for me in the future.

I have had the dry mouth problem since I can remember. I recently had it so bad I felt as if my tongue was bone dry and it hurt having it in my mouth. My dry mouth is not connected to my beta-blocker. The problem was there before and all my problems have just got much worst in the last year. I can’t blame it on the beta-blocker. I once did not take my beta-blocker due to fund problems. I will never do that again, I had a very bad seizure at work and my poor boss had to carry me out of the office to go to the doctor. When my tongue is very dry and I get very thirsty then I know I am getting worst. It is my first indication of bad times coming. I also think it has something to do with my sugar problem as well, if not a little at least. It normally starts at night and is very bad by the morning. There is nothing according to my knowledge that helps it. Just drink water and you do get use to it a little.

99 Percent of the time I have no idea how I make it through the day and less alone how I got out the bed the morning. All I can tell you is to fight it with all you have. I always say I am the boss of my body and not my body. Doesn't always work and I end up laying on the floor wishing I could control all this rubbish in my life. I have been advised over and over again not to STOP and give into the Pots. I have been told I will get worst if I relax. So no matter how sick I feel 9 out of 10 times I go to work. I am learning to make my own decisions. I have been so disappointed by doctors in my life. I could have bought expensive car cash with all my doctors’ bills already. And for what, I truly wonder if these doctors are coming from the same Universities. I can’t believe it with all the theories they have. Which don’t work, as we all know. Do you know how many times I have heard a doctor say, "I don’t know what to do anymore". What gets me to work in the mornings? I have a strict husband how does not actually understand and a wonderful dog. I have mentioned her before and know she is my best medication EVER. Just fight it and don’t give up! I am making the decisions in my life now and doctoring myself. I know what works and does not work,(nearly 10 years experience). GOOD LUCK AND DONT GIVE UP. DONT!

Fight it with all you have. Make dam sure you are eating right and try to exercise. Even if it is a walk in the garden. Try not to over stress yourself and don’t over do it at home or work. With regards to all our symptoms, fight it! I am on my 5 Th disease at the moment and have a hard time 99 % of the time. My saving grace is my faith and my attitude. An example would be when I have so much pain I just carry on. If my legs are too sore to walk, I take a painkiller and continue. You can’t do anything about what your body wants to do. Don’t lay down and give up, that is the worst thing you can do. Mornings are the worst for me and I have a beautiful dog that gets me out of bed every morning. I have mentioned before that she does not understand when I tell her Mommy is sick. Accept what you can’t do and ask for help or get help. I cant clean my house anymore and when I do I limit the amount of time I spend. If I fight the symptoms too much I become very sick afterwards. Find the balance that is best for you. I must say you are living my fear with regards to children. But keep your eyes focus on the Lord and live day for day. Thinking of you! DONT GIVE UP!

Dear Louby The first thing you need to do is get yourself on the right medication. I am on a Beta-blocker for the fast heart rates. It is an improvement but not a cure. You heart beats much slower but still goes fast when it wants to. As for the pain, I am building up a **** of a pain threshold. Some days I cant even ware shoes my feet are so sore. I have leant to live with this and accept it. When it gets really bad I take bruffen, which helps fantastically. As for the chest pains, take magnesium tablets they help allot. They also help you to sleep better. Fluronif is okay for the blood pressure. You don’t pass out quiet as much as you would. The best advice I can give you is to pray, put your trust in the Lord and he will give you strength to get through each day. Accepting what you have is the best cure I believe. Pots is becoming normal for me and I accept all the things going on in my body. You are in control and happiness is a choice. I hate mornings with all my heart. On very bad mornings I pray to God and thank him that I can walk, see, hear, breath, ..... etc. Put your emphasis on what we have and not what we don’t have. Just watch some TV or read a book then you will realise how much we have to be grateful for. My health is only getting worst and I can’t do anything about it. As with regards to talk to healthy people, forget it they will never understand what Pots is. Physically I look okay, but internally my body is having a party. This morning I was so drunk I walk into the wall. (I don’t drink at all, blood pressure) Find a good doctor and talk to us, healthy people don’t get it. If you would like to e-mail me personally you are welcome. I would love to support you and advice you when you are having a bad time. stoltz@cri.co.za Good luck!

I am always tired; I hate waking up in the mornings. I feel like a truck has hit me and I have no energy. I basically pray my way out of bed and during the day. I am fighting this with everything I have. Good Luck!

Dear Lisa I have been preparing my body for pregnancy for the last few months. I have been advised not to have children due to the pots and all our wonderful side effects. I become worried last year and I went and saw a gyny. He advised me to start my family as soon as possible. I am presently 25 years old and he says I can’t wait until my 30. By the time I turn 30 I must be finished with all my children. My doctor and I have been working every month on preparing my body. She has been very honest and straightforward with me. She has told me it is not going to be a easy pregnancy and that I will probably feel much worst than I normally do. I will not be able to give normal birth and cant get an epidural. I will have to go under anaesthetics and have a caesarean. I have educated my self well on this topic and will be prepared when I can start trying in April. I will be 26 by then and I can't wait I am very excited. I am use to feeling terrible so I am sure it will be okay. Any ways I am not going to let Pots take away my opportunity to become a mother. I wish someone had told me sooner that I needed to start my family as soon as possible. My health is only gettimg worst and I only found out about this a few months ago. Please don’t wait to start your family; with our bodies you never know what is next. I have to mention between the gyny, doctor and cardiologist it is going to be teamwork during the pregnancy. I trust my doctor completely and she knows it is my wish to become a mom. Therefore even thou she has advised me not to she will support me all the way. Most people have not got a clue what pots is.

Don’t give up and keep talking to all of us. We will help you all the way. I waited 9 years for a good doctor. Try and find a good doctor who cares about you and is willing to work with you as an individual. You are your own unique person who is going to react differently to every situation. I see my doctor once a month and we discuss my month and the symptoms that a predominantly present at that stage. We review my medication and make plans for the future. You must know nothing is going to cure you and you are mentally going to have to fight this thing with all you have. Don’t give up and keep educating yourself and keep going for more advice and tests. Until you are satisfied you have a strong team of doctors/cardiologists/dieticians and psycho’s to work with you. I have learn to accept if a normal person will react in a certain way. I am going to react exactly the opposite. Just as an example coffee makes me sleep.

I sleep much better since I have been taking magnesium tablets for the heart cramps. But I was wondering, I wake up 2 to 3 times a night my whole life already. Do any of you wake up so much during the night. I hope to become a mom soon and think the waking up part will not be a problem for me. It is so wonderful to talk to all of you. I FEEL SO NORMAL!

I took Florinef for about 3 months. Made my life a living ****. My tremors also got worst when I was on Florinef. I gained 11 kg, which is still glued, to my body. If the medication is not working don’t wait for it to work. I would say give it 2 weeks maximum and not a daylonger. I lost a whole month of my life waiting for my body to get use to Florinef. Allot of the other Pots patients do fantastic on Florinef but you sound like me and life is better for me with out Florinef. I take 19 tablets a day and would never touch Florinef ever again. Florinef is to help raise our blood pressure and retain water in our bodies. And by the sounds of it you have blood pressure problems already. What are they trying to do to you? My cardio gave me a ridiculous amount of medication. Dangerously high. Be careful!

Please be careful what medication you try. I often get tremors. Sometimes they only last a while and sometimes I can go the whole day. I have mild shaking to breaking a bed shakes. When I have a bad attack I go for an aterax injection at my doctor, (Hurts like ****) but calm the body almost instantly. Stress is a big factor and then you have attacks for no reason at all. I have learnt to control my attacks by breathing slowly, taking my tablets and trying to stay as calm as possible. Sometimes this works other times I get rushed to the doctor. Don’t just take any medication. Make sure that the doctor you are with KNOWS what POTS is and is not pretending. If you take the wrong medication you can just make yourself worst. Don’t trust just anyone when it comes to prescribing medication. I trusted a pharmacy recently and ended up at the doctor with heart problems less than 24 hours later. Find a good doctor.

In live in South Africa and the heat is unbearable. I feel as if I could live in a swimming pool all summer this year. But I also feel the cold just as quickly. I am normally dressed like an Eskimo when no one else is and I feel the heat more than other people to. Can't say I know anything that helps and I feel worst during these periods. Good Luck

I work full time and there is not a day that I don’t feel terrible. I tell you I don’t know how I get out that bed in the mornings. I am fighting against Pots; I am the boss and not my body. Look I understand this is not always possible, but fight. I had an attack this week and felt terrible the next morning. I normal pray and thank God that I don’t have Cancer, I can walk, breath and I am not dying from Aids. It is the only way I try to find positive ness in this hellhole. I just keep going and going and going. No matter how bad I feel, I need the money and believe if I sit then I will truly get sick. I have the most amazing boss. He is a perfect gentleman and a wonderful Christian. I have a wonderful open and honest relationship with him. I tell he straight what is going on in my life and he was one of the people who encouraged me to get a second opinion. When a stupid Cardiologist was trying to kill me with very high dosages of medication. I was more than a month at home last year and my fellow employees were very supportive and understanding. Some of them have helped carry me to the car and seen me have an attack. I truly have so much to thank God for that I will not put all my emphasis on POTS. Pots *****! Don’t give up and keep your focus on God, he gives me my strength to get through life. Because as everyone knows, life is not easy, I have been giving 3 Diseases so what else can I truly do?

I definitely feel worst as well like the rest of the women on this forum. My one doctor just told me to get use to it. It is the one week in the month I can't do anything to help my symptoms. I know that I will feel horrible that whole week and I believe I have come to accept it. I must add since I have been on the pill it is not as bad as what it use to be. But this however does not suppress the symptoms, just the pain, flow, duration and moodiness.

I noticed you are complaining about your sleeping. I suffer from horrible chest pains and take Magnesium tablets for this. I have noticed a slight improvement in the chest pains since I have been taking Magnesium. Magnesium also helped me alot to sleep better. Try taking it, but remember nothing off the shelf ask your doctor for a prescription. And don’t trust pharmacist, the last time I listened to them I pick up horrible heart problems.

I don’t have the conditions to which you are referring; you wanted to know about other related diseases. I suffer from Reactive hypoglaceamia, Barlow Syndrome and Pots. The doctors say that these three diseases are all connected to each other and share many of the same symptoms. I am a doctor’s nightmare due to it being impossible to effectively treat all three of the diseases. As soon as the one gets better the other two come out to play. I have many other funny problems and don’t know where to exactly connect them to. But I think the knowledge of know about three present diseases is fine by me. I was recently told by a medical aid that Reactive hypoglaceamia are just symptoms and not a problem. Pots is unknown and Barlow’s is present normal but dormant. I told the lady I wish her all three diseases and then we can talk again. The naivety is absolutely astronomical to me. I think these people read a few lines on a disease and them make some ridiculous conclusion.