Ling

Thank you. I will ask my Cardiologist about this as soon as I see him.

I spoke to my doctors rooms. What is in the drips? You get lots of kinds of drips? Which one are you guys getting? No one has been specific.

Summer is coming and I was thinking about asking my Cardiologist about getting drips every now and again. Why are you getting drips? Does it help? How often are you going? I would be willing to do anything if I knew it could help me feel better.

I can?t say I understand your description 100 %. But I do know what it is like to battle with your feet. My feet drive me crazy some times. If they don?t have pins and needles, they go blood red. Some days I wish I could walk on my hands. I often take my shoes off so that I can walk bear foot on the cold floor as well as wearing open shoes most of the year. I also have pain that I cant stand on my feet. It hurts allot. What we pots people can do about it. NOTING, just the joys of our lives. In summer I drive with the air conditioner on my feet so that they don?t burn so much when I am driving. Driving far is not an option for my feet. Walking far is also out. Most of us here have our own medical collection. I also have CFS one of the 7 problems I have. The best advice I can give you is. If you cant fix it learn to live with it. Doctors do not have all the answers. Trust me we all know about that topic here.

Feel free to ask questions any time on our site. This is one great group of people! They personally inspire me everyday.

I used the pill for many years. My body just decided a few years ago that it does not want to be on the pill any more. No matter what the doctors tried my body did what it wanted to any way. I love being off the pill and will not go on to it in a hurry again. My husband can take medication next. I have had my turn. The pill is great for Endometriosis but no good for the rest of my life. Compared to the rest of my life Endometriosis is miner and I live with the problems it gives. Plus the best part about not being on the pill is your intimacy in a relationship. That part of you life goes from Good to Great. Hope that it explains it as politically correct as possible .

I can?t believe it but I had the best experience in hospital yesterday. I was admitted and give a drip immediately. I was giving no pre medication for theatre. My Anaesthetist actually spoke to me and discussed everything with me. She had spoken to my Cardiologist and they were educated and ready for my body. I only went to sleep in theatre itself and woke up in the recovery room talking to everyone. I felt great. I have never in my life had such a wonderful experience and I was so scared. I am learning more and more about my body. Plus I am so blessed to have such a wonderful Cardiologist. He made them give me extra fluids through out the operation. They watched my heart and blood pressure closely. They were ready for anything yesterday. I could not have been in better hands yesterday.

The drip idea I got from you guys plus I drank electrolytes the day before. I am glad I had such a good experience as last year scared me allot. I never wanted to see a hospital again. I am not swollen and my bladder is working normal again. I have pain and will try to "gentle" go to the toilet for the next few days. But considering what I could have gone through I am so happy. I must also add I was so scared that I prayed a lot and know that is probably why it went so much better.

My bladder pipe was stretched again and I hope it works for a good few years. I wish I could share my South African Doctors with all of you.

I am not looking forward to tomorrow. I am going to have my bladder pipe stretched again. I saw a Urologist last week. I still have a bladder infection after 3 anti bodices. They have now taking my urine to grow the bacteria to determine which medication my body needs. I went for this operation 3 years ago and it worked great. I am not looking forward to the operation. I hope my body behaves its self. I don?t have time for this and don?t want any complications. Apparently the anethetics (spelling) has contacted my Cardiologist to get advice on how to work with me. I am getting a drip as soon as I get into hospital. I dehydrate very quickly. I have had 5 bladder infections in a year and I have a chronic bladder infection at the moment. I don?t want to take antibiotics for the rest of my life and know this operation helps. Plus I am trying to fall pregnant and can?t imagine not taking medication for the pain if I get a infection when I do fall pregnant.

It scares me to think what my body is going to do. I hate this.

I am on a anti-depressant at the moment. I was at the point in my life where I thought I was going to have to stop working and land up in bed. My Cardiologist recommend a new doctor and he immediately said I have a seritonium deficiency. Apparently pots patients often suffer from seritonium (spelling) deficiencies. I am not funny about anti-depressants and will try anything that improves my life. Within 4 days of starting my medication I was a different person. I can?t tell you what a difference it has made in my life. I can hold a cup in my hand again. I can read and concentrate. I am working again at home and work. I am so happy. I don?t have depression but a seriatim deficiency. Try it, IT HAS CHANGED MY LIFE like you can?t believe. I just accept that my body can?t do anything normal including this. Plus I don?t have horrible headaches any more. I had such bad head aches that I though my head was going to explode.

I have chest pain every day of my life. Sometimes so bad that it brings me to my knees with the most expressive words come out of my mouth. What works are beta-blockers. Great stuff for heart cramps. Now that I am trying to fall pregnant I miss my beta-blockers terribly. All I can take now is Magnesium tablets. This works great and I dare not skip a day. My body tells me very soon if I have forgotten to take my magnesium tablets. I have pots and Barlow?s syndrome. I also believe my body does not react normally to pain. I have Fibrom... as well so I believe this is probably why my body makes my pain worst than a normal person would experience it. Sometimes I want to pass out from the pain. Funny bodies we have. I just believe my body is very sensitive.

I have noticed I must not get very angry. I have horrible heart cramps shortly afterwards. Luckily I don?t get that upset very often. Dont listen to the doctors. Most have no idea what they talking about. I only listen to my doctors and walk away from the un educated ones.With a good laught of course.

Hi Christine

Its great to hear from you again. Looks like not one of us are pregnant yet. I know exactly what you going through with out medication. The drunk feel is part of my life for me. I know when its is very bad my blood pressure is horrible low. What you need to do is then look after yourself even better than normal. Firstly eat well. I eat 6 small meals a day. Drink lots of fluids and electrolytes are helping me allot during this horrible period in my life. Salt and a low fat no sugar diet works wonderful for me. What every you do don?t go and lay down. Fight this with all you have. I have spent many days of my life praying just to get through a days work. If I did not fight this body so much I don?t know where I would be today. Thinking of you. Hope to hear good news from you soon.

Hi Jess

So sorry to hear about Alex. I wish I could come over and help you out so that you can get some sleep. I am so grateful that it is nothing serious and that you received such good service. Look after yourself and enjoy your babies. Thinking of you.

If I ever made a good decision in my life it was to marry my husband. We have been together for nearly 8 years and married for 3 years. My health over the years has just got worst. Something that is very important to Mario is that I talk to him. He wants to know how I am feeling and what is going on. He supports me emotional so much. Especially on days when I am down. Financially he pays for all my medication. At one stage this cost him a fortune and he never moans. My body is very entertain and never gives me a dull moment. As soon as one-problem stops the other starts. He is right behind me all the way. He lets me rest when I have to. Reminds me what I should not be eating. He carries me when I am very sick and rushes me to doctors. Days were I think he is ignoring me and does not know how I feel. He will just starting talking to me about my health. Confirming to me that he feels and hears everything that I am going through. I just can?t imagine life with out my husband.

The only area that he does not support me is the dishes. But he has promised to buy me a dishwasher as soon as we can afford it. My doctor has advice me to make quick/easy meals. He does not cook at all. No matter how sick I feel I have to make supper. Which is actually a good thing. I know if I lye down some days I wont get up. My husband works 11-hour days 6 days a week. So I cant blame him. But that is the only negative thing I can comment on. At the moment I am angry that my health cost me so much money. I am 27 years old and should be buying things for my home. But No I am seeing doctor after doctor. Fixing one body problem after the other. When will it end? We only have a hospital plan due to my health. I deplete medical funds to quickly with all my medical problems.

The longer I know my husband the more I love him. Being married to him is the best part of my life.

In S.A we call it Barlow syndrome. It causes alot of pain for me. All my family have heart problems. If it gets really bad you can have a operation done. Mine is not that bad. I take Magnesium tablets everyday for the pain. I was also told it has nothing to do with the pots. This was also identified before pots was.

Thank you all for the advice. Pots has many problems. I know my bladder does not empty as it should. Will let you know what the doctor says at the end of the month.

I have had 5 bladder infections in the last year. I have an appointment with a Urologist at the end of the month. I am SO SCARED to go into hospital again. It is a small operation whereby they stretch my bladder pipe. That does not scare me it is after the operation what my body is going to do that scares me. After last years laboroscopy I am PETRIFIED OF HOSPITALS.

You all know I am trying to fall pregnant. The doctor has advised that I do this due to me not being able to take medication if I do fall pregnant. The pain from the last bladder infection was very bad. I needed two dosages of antibiotics just to get rude of the pain.

I am scared!

The joy of doctors. I agree with you making an appointment and discussing your present situation. If she is deliberately treating you this way leave and find someone else. I personally had a problem with a doctor the same as you. I phoned my Cardiologist and asked for a referral to a doctor. Due to the fact that we have something so rear he referred me to a good local doctor that would be willing to learn. He knew nothing about pots when I walked in. He has been wonderful and is learning more and more about pots. Over the years I have lost so much respect for doctor and don?t take there rubbish anymore. Don?t know what you talking about, well then GOODBYE.

Have you gone for tests to determine what is causing the migraines. I get migraines if I eat sugar. I eat 6 small meals a day with low fat and no sugar. I am on Anti depressants at the moment and it has made a wonderful difference in my life. I was having bad pressure head aches with aggression and no energy at all. I am feeling better everyday now. I had a Serotonin (spelling) deficiency. The joys of living in a body that never gives you a boring moment. And this is on top of the daily activity of pots.

Hope you feel better soon.

Thank you all for the names and advice. I don?t know which heart medication I will be going on as yet. I am very excited and looking forward to starting my medication again. I cannot live with out my medication. Nervous about what my gyny is going to say. You all know how he feels about heart medication and babies. I might have to leave him if he does not want me to go onto anything. His opinion is coming at a great cost. It is not worth loosing my job or myself because of it. Not to mention what my wonderful husband is going through.

Very Happy about this!!!!

I am so excited I can?t wait. I am fetching my prescription tonight for my medication. He has done blood tests to see what?s going on. He immediately explained that my Seretonin (spelling) levels are low that is why I am feeling so bad. It makes such sense. I don?t know about which heart medication I am going on. If my gyny is funny about this I will just find another gyny. He says in 2 weeks I should start feeling better. Cant wait!

Thanks for all the advice.

I have just come from my doctor. I have a Serotonin (spelling) deficiency. He has also checked my thyroid and iron levels. He will be contacting my cardiologist and gyny to discuss my medication. I have posted a mail to all moms to help me find a safe heart medication. I pray your stories will help me find medication that can help me improve my health. I will be going back on to anti depressants again. He says this will help me and explained why I am feeling so bad.

Thank you for all the advice. Sorry I have bad brain fog today.

Dear All

Thank you for all your advice. Please can you give me the names of the medication you used when you were pregnant? Please give me the active ingredients to the heart medication used and not the trade names. My doctor will be contacted my Cardiologist and gyny to discuss this. I need your stories and medication names. Please also mention that you had healthy babies and that your health needed the medication. Hoping your stories will help me. I cant live like this anymore.

THANK YOU!

There is nothing left in my body. I just want to sleep. I can?t concentrate or do the most basic things. This morning alone I forgot to comb my hair and wash my face. I feel the weight of everything. My steering wheel weights a ton and my coffee cup is to heavy to even hold. The earliest doctors appointment I can get is Friday afternoon. It has been like this for about 2 weeks now. I feel empty and heavy. My body is just to heavy to live in at the moment. Its as if someone has taken a vacuum cleaner and sucked out all my energy. I only have enough to just live. What do you think could be the reason for this?

Last year when I had my operation for my Endometriosis I notice my body does not react normally to pain. I recently had two small cuts on my hand. The first one from a potato peeler. It was so painful. The funny one was from a blade of grass. The pain from the cut actually woke me up in the middle of the night. I treated and tried to get back to sleep. This is not right and ridiculous. I grow up with 3 brothers. I played sports, climbed trees and everything. I was never supper sensitive. Or am I now ? I feel as if my pain threshold is disappearing. Is it the Fibrom... or the pots?

South Africa Nelspruit.

Hi Tsampa

I have an Aunt in Switzerland. She is a fantastic nurse in the I.C.U. department I will ask her if she knows of any good doctors. I will try to help you find someone in Switzerland. You need to find someone that understands Pots. I don?t know what I would do with out my Cardiologist. He is fantastic.

Good luck and just fight it. I get out of bed everyday of my life feeling terrible.

Thank you all for your advice. I don?t know what I would do with out all my pots friends. It?s just wonderful to have people understand what I am talking about. I have decided to just live one day at a time. That way I am not counting the days and not concentrating on how long I will or have been with out my mediation. I am using my ovulation dates and looking for the physical signs of ovulation. There is no lack of trying. My poor husband can testify to that. I am buying a thermometer this week to start measuring my temperature. I would not be in such a hurry if I did not feel so bad. I can't put into words how I am battling without my medication. I never dreamt it would be this bad. I am also going to try and think of other things. I am stress too much about my body at the moment.

Thank you for everything.