Ling

I have just come back from my EEG and the results are negative. I spoke to my Cardiologist as well today and none of the blood tests show or prove anything. As usual, they have no idea what?s wrong with me or what to do. I guess I am very privileged to have such wonderful, honest and caring doctors. But the future does share me immensely. Thank you for your responses.

I have been in hospital again. I was in CT ICU for 4 days. Thursday night I had a bad night with my heart beating very slow and not being able to sleep. Friday morning I woke up with a dead tongue. Silly me went to work and ended up on the floor shaking and passing out for long periods of time. My cardiologist and physician immediately booked me as the suspected a small stroke. I had lots of blood test, MRI and a stress ECG. I don?t show any proof of a stroke but have been put on Ecotrin for the rest of my life. My heartbeat was irregular until Friday afternoon. I started talking again after that. My heart rate and blood pressure was very low until Sunday afternoon. My doctors are clueless. They cannot understand or explain what my body is up to. Please can any of you help? I hope one of you have had a diagnosis or a similar experience to help me to understand what?s happening. My body is just getting worst and my health in deteriorating. I?m 29 and I just seem to get sicker every year. I am scared and I don?t know what the future holds for me. You all know my whole life is Britney. This is the 9 times since she has been born that I have been in hospital. All I want to do is raise my daughter. She is my world, my whole life. Help please! My stress ECG shows I black out with a normal heart rate and a normal blood pressure. I wish they would stop using the word normal with pots people.

I had a very long hard road these last few months. My health is getting very bad. I have e-mail and told you that I basically going to hospital every few months now. I have been in hospital 7 times since Britney was born. I have my next operation in fourteen days time. I now have a growth the size of a golf ball on my ovaries. This is giving me allot of pain. Plus I am now with out a contraceptive. I will be having the Mariana inserted in hospital this month. Due to the pulmonary embolism I survived I may never be on any form of a pill again. None the less I have turned to Chocolate due to not being able to handle all of this emotionally any more. Plus I love motherhood more than I could ever explain. I thank the Lord every day for my angel. But how do you make peace with only having one child? After the amount of damage I have after the pregnancy we have decided it?s too dangerous to put my body through another pregnancy. But how do you emotionally make peace with this? How, how, how? I am gaining weight, which is horribly uncomfortable, but I don?t know how else to handle this emotionally. All my specialist say this will all just stop one day. They say I have nothing more than bad luck at this stage of my life. O boy. Chocolate eating depressed women. Help!

Medication is there to help us but nothing is ever going to take everything away. With the years you will learn what best for you and what works and does not work for you. I glad to see you not taken 100 of tablets. Some tips would be eating, sleeping, stress, medication then most of all your emotional well-being. It?s hard to be sick and live in a body that is always up to something new and exciting. Fight it with all you have and just keep on going.

Hi All Do any of you have Reflux Disease? I have just seen a new specialist who diagnosed me with Reflux Disease. I have been coughing and had breathing problems since my pregnancy. 13 months later it is out of control. Is this a pots problem or due to my difficult pregnancy? I also survived a pulmonary embolism. I don?t know if it?s from that. But I have allot of damage to my heart and lungs from the blood clot. My poor husband is paying 1000 for my tablets a month now. Still coughing and having breathing problems. Any advice from the only people who understand what it?s like to always be sick. I have been in hospital 6 times in the last 12 months. Starting to get ridiculous. Otherwise I love motherhood. The best part of life. My angel has started walking now and expresses her likes and dislikes more. It just so fantastic to have a child. I wish I had done it years a go. Ling

I just want to cry when I read your mail. I will be thinking of you and have you in my pray's. I took 9 years before I started getting direction on my health. Good luck. Just remember dont trust every doctor you meet. With 13 years of bad health I am sure you know whats right and best for you. Lots of love from Ling and Britney.

The joys of being women. I find personally that I need aggressive treatment. You can go to your loyal pharmacy or contact your gynny. I need to have very strong internal and eternal treatment. Something that is very important is I take interflora tablets for a few weeks after the infection. It works wonders and prevent the problem from starting up again. A few aspects that you need to consider is that you might need to treat your partner as well. Often in these situation it is the partner that is the carrier and starts this wonderful problem us women have. I personally have noticed that I no longer can use Condoms or any other exciting extras in this department. My gynny has also commented that I am to clean on myself. Can't imagine being any other way but he commented that we should not always clean all the parts of of bodies so "specially" if I can put it that way. Trying to be politically correct for our more conservative members.

I have battled with my Bladder since a small child. In my 20 the infection started getting worst and more frequent. I have had my bladder pipe stretched twice. I have been on chronic antibiotics and hosptilized. My body stopped after I was hosptilized last year. I have not had an infection since. I have a few rules that I live by to avoid infections. Showers try to avoid baths. No tight fitting pants. White soap and toilet paper. Only cotton underwear. Wipe front to back if you a lady of course. Empty your bladder at least once every hour or maximum every 2 hours. Don?t hold it in. Drink plenty water. Empty your bladder directly after intercourse. Using condoms helps allot for chronic bladder infections. The number one problem. NO BUBBLE BATHS. I hope I have mentioned them all for you. Good luck I know how horrible this can be. I have gone for all the test and I know that my bladder has a growth and does not empty normally. My body says I am finished but I have seen with my own eyes my bladder hardly empties.

I live in South Africa. You have to go. It is going to be wonderful. A few things I would advice you on are: Clothes, as little as possible the heat is un bearable some days. Water, drink as much water as possible and don?t drink the water when travelling. Not even a little when you brushing your teeth. Food, pack food to eat constantly to keep you going. My next concern would be water and insects. You need to stay out off certain rivers and be prepared for Malaria. Sprays, nets, soap... etc. My husband has just had Malaria and it?s horrible. You have to go Africa she beautiful. She will take your breath away.

I have reactive hypoglycaemia. I cant eat anything with sugar. Plus after the pregnancy I have gotten worst. Even more sensitive to sugar than before I was pregnant. My daughter is gluten intolerance. Its a nightmare diet to follow. Where I live you don't get any gluten free products. My cousin posts me food so that I can just eat one "normal" meal a week. I am very hungry, but breast feeding is very important to me. Plus you just have to have one session with Britney screaming for 3 hours to never eat gluten again.

I use to take Tripaleen but stop and my Fibro has improved significantly. I use to go for injections at the trigger stops but my pain is considerably less with out medication. Tell your friend to watch her diet. I have noticed if I eat sugar I have more pain. I am not aloud sweets but when I do my Fibro gets worst. Most of all just accept the problem. If you make peace with all you have then things go allot better.

congratulations. Great to hear its going so well. Just remember that no matter how bad you feel. It is worth every second. Being a mother is amazing!

No one knows your body like you do. If you feel that the medication is doing you more harm than good, then leave the medication. If it is safe to leave it of course. As for Doctors get their advice and use what you feel works for you. They base all their treatment and advice on "normal people". Nothing works normal for us and medication is a nightmare. I take Doctors with a pinch of salt and leave medication as much as I can. My health is much better with out Doctors and medication that only causes more problems in our crazy bodies. I have a breathing and coughing problem since Britney has been born. No one can truly tell me why and I guess that?s life for us. A BIG HUG TO YOU!

Dear All I am finally back at work. I have been dying to write to you all and let you in on all the events of the last few months. Britney was born 23 May 2006. I had a C.Section and fell in love the moment I saw her. My C.Section went well and was glad to end pregnancy. Britney is healthy and the most wonderful things that has ever happened to me in my life. I LOVE BEING A MOM! The last few months have not been good health wise and I had a very hard time physically and emotionally. I had Britney on the Tuesday and landed up in I.C.U the Sunday. I was treated for a suspected embolism, lung infection and then Heart failure. As usual they had no idea what was wrong with me. I could not breath and started coughing none stop. I was coughing up blood balls. Britney and I were separated and she had to stay home, as they were too scared I would give her what ever I had. I could not breast feed for a week and the separation was terrible. I was sick for 12 weeks after Britney birth. Afterwards I slowly improved. Britney is very healthy and such a blessing. The first 10 weeks she cried none stop. I think she had colic. I also noticed she screamed blue murder when I ate certain foods. She is gluten intolerance. As long as I don?t eat anything with gluten in she never cries any more. It hard for me as I love pasta and bread. Breastfeeding is important to me as I wish to give Britney the strongest possible foundation as a adult. So rice cake for me until we stop breast-feeding. I can finally say all is eventually well with both of us. I just love being a mom so much and never dreamt it would be this wonderful. I am sad, as my husband does not want to have another baby. He just feels with my health he does not want 2 children and no wife. I have never been so scared in my life before but yet I would love another child. I know he is right as 6 hospital trips in one year is starting to get ridiculous. Hope you all well. And promise to write regularly as I am back in the land of the living again. Dizzy girl. I promise you a personal letter.

I normally take Inderal 180 mg. I miss it every day of my life. It is wonderful and I never plan to live with out it again. I found that Inderal truly helps make life that much better. The first 10 days on Inderal are "interesting" but give it time it so worth it. As soon as I have had my children I will go back to that dosage in a heartbeat. I started heart medication at 25 and will be on it for the rest of my life. Give it chance.

My most irritating dizziness is when I am driving. I often pray myself to work and have to concentrate so hard to just make it to work and back. Summer time is the worst for me, as I hate the heat. My pots goes crazy in summer. The Dizziness never leaves you, you just learn to live with it and know when to take it serious or not.

Medication can aggravate tremors most definitely. My tremors are some how connected to my heart. I don?t truly understand but I am learning to fight them off. Life with out heart medication makes it more difficult but its much easer to live with the tremors when I have my Inderal 160 mg. Stress also plays a large roll with tremors. I can break a bed when my body starts shaking. It?s an exhausting horrible feeling. Good luck!

Thank you for the words of encouragement. I feel much better today. I have not found any way to sleep better. Just counting the days down now. I can?t have an epidural due to my blood pressure. Viginal delivery is out due to my over sympathetic nervous system. My body over reacts to pain making small things very painful for me. Wish I knew how to stop it. I grew up with 3 brothers never had any problems with pain before my 20's. CANT WAIT TO BECOME A MOTHER. I KNOW I AM GOING TO LOVE IT!

My Cardiologist recommends that I get the flu shot every year. The positive contribution much out weights the negative reactions. It helps to protect our bodies and helps us fight a cold if we develop one. I had a infection in my heart last year and trust me; you don?t want to have that. So go for the flu injection and help to protect the crazy body you live in. As for reactions. Well, I am not going to lye to you. One year I had a very bad reaction to the injection. Bad heart cramps etc. But that was only one year and I will go every year to help protect myself.

Thank you for all the words of advice and encouragement. I need all the positive input I can get at the moment. I never in my life dreamt it would be this difficult to be pregnant. I am in allot of pain and have not sleep for over 10 weeks. My legs and arms are driving me crazy. I have allot of pain and cramps. Today I just want to cry and cry and cry. I don?t know how I am going to make this last few weeks. I need to go on my knees to get strength, I feel as if this is just too much for me at the moment. O boy, nearly there. So close, but so far. Not doing good, Sorry. I just feel like I could give up. Not a option in my life I know, but that is how I am feeling.

I take DS 24. It has worked wonderful for me for many years. I get this over the counter as I cant take normal vitamins. Get your doctor to prescribe a daily vitamin for you as allot of these vitamins have stimulates in that our sensitive bodies react to. I have never had a days problems on DS 24. Good luck, I believe in taking a daily vitamin as our bodies as crazy anyway and we need all the help we can get. I take Magnesium extra for heart cramps and other body cramps. It helps for the constant body pains as well of Fibrom....

I just wanted to give you all an update. I have 35 days to go and the excitement is getting greater by the day. I saw my gyny last week. She is doing fantastic. She weights 2.2 kg now and has turned already. Everything looks good and I am scheduled for my C.Section on the 23 May 2006. Doctor says it would be madness to put me through normal birth, as I can't have an epidural. He feels it will be better for my health to have a C.Seciton I just don?t know if its under anaesthetics of spinal something yet. My Cardiologist and him will be discussing the options before I go into hospital. Just say a pray for me as the next few days I have so much planned. If she comes early all my plans fall flat. Not that I would not mind, but you know us potsy people never stop. I am writing exams soon and have allot of work to finalize before I leave on maternity leave. I guess God has chosen her birth date already so time will teach me. I am very excited and can?t wait to hold her in my arms. With regards to pregnancy. CAN?T WAIT TO GET IT OVER!

My Cardiologist has warned me that I can land up in bed for a few weeks after delivering my baby girl. Did any of you receive extra treatment in hospital to help strengthen your bodies after the deliveries? One of you mentioned extra drips .... ? What can my gyny do to help me from not landing up in bed. I will obviously fight this with all I have. I have been dying to be a mother and can?t wait to play with my angel. I desperately want to breast feed and look after my baby girl myself. Any advice please? I see my gyny tomorrow. I will update you then on the latest development. Dying to know if she has picked up weight or moved yet. My heart is becoming more active now and I find myself having funny heart beats even when I do nothing. Is this normal towards the end? I am now 33 weeks pregnant. Thank you!

My legs are getting worst and worst. They are dying from the hips downwards when I sleep. The pain caused by these results in me waking up at nighttime. I walk around my room and force my legs to wake up and then I go back to sleep again. This happened 5 times last night. I am also experiencing muscle cramp. The pain however is still intense and like last night has a stayed with me for the rest of the day. I saw my Cardiologist and he says it is because my veins don?t constrict due to pots, the swelling of pregnancy and the pressure that she is applying to my body at nighttime. Plus my sympathetic nervous system is over stimulated resulting in the pain I am experiencing. As usual no tablets, no cure for us. I sleep with my legs raised (two pillow?s) plus I take magnesium for the cramps. Nothing is working. I sleep on my right side. My cardiologist does not want to prescribe pain tablets as he feels it will not solve the problem. I can?t bear the thought of another 9 weeks like this. I just pray that this is pregnancy induced and not a new hobby my body has found to do. Any advice please, I am almost scared to go to sleep at nighttime due to the pain. I don?t know what to do and the pain is intense. All I can think of is my baby and how important these last few days are for her. Goodness knows how I am going to get through them. She however is more important and I need to fight this. O, Boy!

I would suggest seeing your Cardiologist ASAP. Your symptoms sound very similar to mine. I was admitted to hospital in December for a Virus infection in the heart. I had unbearable chest pain and could not even breath. The outer layer of my heart got a virus infection and this was causing the immense pain. I have the most wonderful doctor and he did allot of tests and looked after me so well. I had to lie in bed for a week on my back to give my heart chance to heal. Normally they can give you medication but I can?t take any due to being pregnant. Find a good Cardiologist. You pain sounds unbearable and I hope someone finds out what your body is up to. Never a dull moment with pots!