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I am having allot more headaches than normal. But different than a normal head ache, if I can explain it like that. It feels like pressure in my head. As if it is going to burst. I have also notice it makes me aggressive and very irritable. Totally out of character. Even in augments I am calm and loving. With this I become something I don?t know? I get nauseas and have chest pains. I normally remove myself from public and go and sleep it off. This is becoming more frequent. Should I be worried about the aggression and pressure in my head? I wonder if Iam not getting High sugar levels and not low sugar levels. What are the symptoms of high sugar levels? Thank you for all your support. I just love this site.

I just don?t know how I am going to make it. Life without my heart medication is ****. Life with Pots is very difficult and challenging less alone with no medication. Sometimes I wonder if I am not a making a mistake. I wonder if my body would even be able to make a pregnancy. I am doing everything and not falling pregnant. I know it has only been 3 month but you are the only people that will understand when I say. I am DYING here. Everything is worst. Thank goodness I have a sense of humour or else I don?t know how I would live in this body everyday. Any advice please, I just feel like giving up. Sorry for the negativity today. Please remember my gyny said if I cant live with out my heart medication no baby.

I have just ordered a book called The Hormone Connection. I can?t wait to read it. It talks about how hormones can affect our lives. When I read the pamphlet it was as if they were talking about all my problems. The pain, tiredness even my endometriosis and fertility is in this one book. It basically connects hormones to everything and I am very excited to read and learn more about this topic. They don?t recommend medication but healthy eating and specific foods. They say they have 3 foods that help stop Endometriosis. I would love that. Will let you know if the book is any good. The book cost R279.80 so that should be about $46.00 for you guys. Next week I am starting Sure Slim. It is a weight less group that takes blood tests of your Thyroid, kidneys, and liver and hormone levels. No tablets just natural food to help you get everything in balance as well as loosing weight. My cousin has MS and she recommended them to me. I am excited about loosing weight. It has been 16 months since I left Florinef and I still have the weight. It?s horrible to have fat on your body when you have been underweight your whole life. I am curious to see what the blood tests have to say about my hormones and thyroid. They say hormone levels can even affect your chances of falling pregnant. A lot of women have fallen pregnant on this diet due to their hormone levels being corrected. Well let?s see. Dont worry it is a balanced healthy diet.

My tremors are back after a long while with out them. It was horrible I was sitting in church on Tuesday evening listening to Bruce Winkelson. When there we go, the jaw starts going for it. As if I am sitting in a fridge. Eventually my left arms started twitching and the electricity was through out my whole body. No imagine having this in church. Anyway since them my body keeps threatening me with these attacks of ours. It has been four days and it won?t leave me alone. What?s up? I know we get these if we are very stressed out. I can?t tell you how happy I am. I love life and have a million reasons to be happy. I know our healthy is a pain in the butt. But that is about all. I have mentioned I am off all medication and trying to fall pregnant. So to be honest I expected this. I would just appreciate some information and opinions on how you experience this, what you understand and what you can do about it. Considering I am not taking any medication. I really want that baby boy so I need to control this. Thank you ALL

Hi Blackwolf Sorry to hear about the way you are being treated. I am actually happy this doctor has stopped treating you. You don?t deserve this treatment and need to find a REAL doctor. Good luck with your appointment with the new doctor. I hope she is everything you hope for. One of the problems of pots is the abuse we get from doctors. It seems to be worldwide. Sad but true. Thinking of you.

Your husband sounds amazing. What a blessing to have a husband that understands your health and supports you so much. Be happy not all of us have so much support at home. My husband understands but does not support. No matter how sick I am I still have to do everything as if I was healthy. They just don?t get it. I wish he could live in my body for one day then we will see if he does what I must do. As for your son I think it is important that you educated him slowly over the year. I have thought if I have kids I don?t want them to know how bad it really is. I am scared my child might mimic me and say, "I am sick" always. Not understand what he is truly saying of course. Good luck, wishing you and your baby health over the next 2 months. I have read girls are more likely than boys to inherit our pots?????

Tearose your advice sounds wonderful. I am just repling to wish you well and hope all works out for you. I am not a mom yet and can only dream of how hard it is for you. Just fight it with all you have. It is the only way I know how to get through this life. I agree with Tearose I dont think moving will be such a good idea for your family as a whole.

I am a technician in the Entomology department for an International Research company. I work with insects for a living. I LOVE MY JOB. My health is a pain in the butt. I came to work no matter how bad I feel. I know if I don?t I will just spend the whole day in bed and do nothing. My one doctor has advised me to never stop working. She said I would land up bed ridden. I fight this with all I have with lots of praying in between. I personally agree with my doctor about my work. It keeps me going. I read an article about people who stay home that they are sicker than people who work. This however is very personal and each of us differs. Today this works for me and I hope that I can fight this for many more years to come. Just fight and go on with life. I fit the weirdest things in my life now. I go for my flu injection when I am on leave so that I can spend the day in bed afterwards. Our bodies are so exciting. Ask Jessica about this topic. She has it all wonderfully balanced and runs her own successful company from home. Not to mention being a full time mom and wife, plus the bundle of joy on the way. Choose a career that you can see yourself doing for many years. I wanted to be a C.A and I am glad I did not study to be one. I love Entomology much more.

I am just so angry by your mail. It feels as if I was with you every step. It is disgusting and disappointing how naive our medical "experts" are. Way to go with her fighting spirit. Imagine what they would have done to you if you let them. What an inspiration you are. I want you to think about something. I always say no one can upset you in life if they don?t mean anything to you. These are just everyday people who emotionally abused you. They mean nothing to you and there for just walk away from it and don?t even think about their stupid opinions again. They don?t matter in your life. I know about the abuse you talking about. We all feel for you. Just keep searching for a medical person with true knowledge. As for your strength just pray. All strength comes from the Lord. He is the only reason I have made it so far in my life. We all know how hard our lives can be. I send you a hug and next time you go to hospital, just phones us all we will sort the doctors out for you. Let them try and tell all of us that rubbish. Look after yourself and forget about this experience.

Please can I have the author to the book. I am in South Africa and there are 5 books on record with this title. Thank you.

When I had my pipe stretched I had an x-ray of my bladder. My bladder does not empty probably and certain muscles are not working as normal. I had a wonderful urologist and he did not want to put me on any medication. He said I was to young and that I should just learn to live with it. The operation made a world of difference and I was fine until I had that stupid laporoscopy. Since then I have been battling with my bladder again. I think pots is responsible for more than we realise.

I have had my 3rd Bladder infection in 9 months. Is this a pots problem or not? My bladder started up again after my laboroscopy (spelling?) last year. It was fine for 2 years after I had my Badder pipe stretched. Now I am starting to have problems again. What do you guys think?

Thank you Tearose. I need a laught today. Life with out medication is no joke.

Thank you for the list. Hits home on many topics. I personally hate the one "But you look so well". Screaming comes to mind when I hear that one. Like which organ in my body that does not work would you like to be able to see? Not to even mention that our bodies have nervous systems that seem to have taken a long holiday to goodness knows where. Great reading. Thank you.

For me my heart medication is a lifesaver. I am presently off my heart medication in the attempt to fall pregnant. I never knew how lucky I was before I left it. My beta-blocker definitely helps with exhaustion not to mention everything else. I was taking 160 mg Inderal and dream of the day I can take it again. Give it a try I will definitely never be with out my heart medication again. Well done on the lifestyle you living. What an example to all of us!

Thank you all so much for the advice. My heart is very busy lately and my blood pressure and sugar levels are very low. I appreciate all your advice and will try to apply all of it. Thank you Christine for your support I will be e-mailing you directly for advice. THANK YOU ALL!

Hi All I am busy with my second last reduction of heart medication. Next Saturday I will be off all my chronic medication and trying hard to fall pregnant. I feel terrible. I am exhausted and battling to concentrate. I just want to sleep and sleep. It is affect my work. Is there anything I can do? Thinking about my bed all day long. I wonder if I have made the right decision?Last night I felt so bad, it felt as if I was dying. All energy had been sucked out of my body and I was left with this ton of flesh to live in HELP!

I have the same problem. I have noticed sugar and the heat affect the swelling more. I am more swollen when I menstruate as well. Don?t try any water tablets. THE SIDE EFFECTS ARE NOT WORTH IT! I am getting smaller lately but I believe it has to do with me leaving my heart medication. I started this problem after taking Florinef. I gained 13 kg and still have 10 kg to loose after 14 months?

For the last 3 months I have been reducing all my chronic medication to start my family a.s.a.p. I don?t know why my doctors are so strict in South Africa compared to all your doctors. I am not aloud to be on any of my medication. This has been one **** of a road and I agree with you leaving your job through all of this. I don?t know how I am working and doing this at the moment. Thank goodness for Cera Lyte 50 that helps on very bad days. Good luck and remember you?re not alone. Leaving your medication is going to be hard. But my wonderful Cardiologist just keeps telling me it is going to be worth it in the end. I can?t wait to hold my baby in my arms. I am praying for twins to get this over and done with. I think Mario would just die but I am next in line for twins in my family. So lets hope, because I don?t know how long I can live like this.

Well done. There is no better feeling in the world then helping someone else. I am sure you are going to make a wonderful contribution to many women’s lives. Good luck and I hope you find the inspiration and strength to help all those women who desperately need your guidance.

Dear All It not doing well at all. I am suffering with intense pressure in my head and a sense of electricity going down my spine. I phoned my Cardiologist last night and he said I need a brain scan (Cat scan). I am on my way to my GP. I trust her judgement 100 %. Do any of you get this and what must I do? I am use to Migraines but this is unbearable. Still busy weaning myself off the heart medication. I will not give up!

Thank you all for your support and advice.

I am busy getting a medical alert bracelet. I am petrified that one day I am in a car accident and they give me the wrong medication. I am supper sensitive to medication and my heart goes crazy for nothing. My first question is what does your medical alert bracelets say? How do you explain in one sentence the craziness of our bodies? I want to get one because I don?t trust doctors or other medical staff. I know they are going to give me the wrong medication.

I need to fall pregnant as soon as possible. I am leaving the medication because my doctors says it is either my medication or a baby. Besides my pots and other private medical collection. I have endometriosis as well. Last year my husband and I were explained that the chances don?t look very good for us to have a baby. So! We are very excited about working hard toward this in a few weeks time.

I just wanted to share this with all of you. I have found a wonderful new women and she offers Palates. It is allot like yoga. I feel fantastic when I am finished doing it. It requires very slow movements and nothing Cardio. I have joined her class and she is working well with me. She is very considerate and aware of the bodies many exciting problems. I am taking it very slow at this stage, as I am busy reducing my medication. This is a road I only plan to do once in my life. I never dreamt leaving my medication would be this bad. If you guys have a class like this close to you, give it a go. I never in my life dreamt I would ever be able to do anything again. I must also mention that I feel it is the best form of exercising I have ever done before. I have discovered many new muscles in my body. Wish you all well !