Ling

I never imagined feeling this bad. I expected pain but nothing like this. How long until I get use to this feeling?

I work full time and love my job. Going to work everyday takes allot out of me. I hate mornings and often pray myself to work while driving. All your symptoms sound like a normal day in my body. I feel you are almost giving them to much attention or should I say power. It is great to hear from us all that we are experiencing the same and then you have to accept it. Accepting P.O.T.S is the best thing you can do for yourself. Educate yourself and ask many questions. I eat 6 small meals a day. Low fat no sugar. In other words don’t eat at work. I would not eat a meal there without feeling sick afterwards. I eat as much salt as I can. I drink water all day and all night. I don’t sleep through a night in my life. I normally get up 2 - 4 times a night. Mostly for water. Your thirst problem might not have come yet. My cardiologist emphasises water as being very important I personally know it is very important. Drink lots of water and eat healthy! I live in South Africa so I can only comment on the heat. I HATE SUMMER! I don’t know your cold snow winters but everything gets worst for me in SUMMER. Through this board I have learnt to live with it and KNOWING I AM NOT ALONE IS GREAT! I had my first cold evening this weekend. I was like a child on Christmas day. In heaven! Good luck but study more on our condition. Be prepared for the changes you will be going through.

My blood pressure can get very low when lying down. Some mornings when I wake up you would think I am drunk. If I am not holding on to the wall then I walk funny. I personally feel that my blood pressure drops so that I battle to even wake up some times. Scary but true, that is why I hate mornings so much.That is why I cant over sleep or skip a meal. Skipping a meal makes it even worst. Good luck!

I have gone from 160 mg Inderal to 80 mg Inderal this weekend. I expected more heart cramps and palpitations but not this fatigue I am experiencing. I could have slept the whole weekend. I feel as if someone has sucked out all my energy from my body. I want to pass out a little more than normal. I am just very weak. Did all you ladies also go through this when starting your families? One day when I have my children I can tell them how much work and planning went into them. My children will defiantly be wanted and planned. Healthy women don’t know who lucky they are! Any advice on this topice?

Please explore the possibility of food in your diet. I have mentioned before that my migraines have almost disappeared since I left SUGAR. Have a glucose intolerance test to determine if you have this problem. I recently have been suffering from horrible headaches. I believe for some reason I can’t eat bread anymore. I love bread and the mass produced bread is a no go lately. Anyway so be it if it keeps me headache free. Good Luck I remember what it was like to be were you are. I always use to joke that I had more medication in my cupboard than a pharmacy. Just remember that all this medication has to be filtered by our poor kidneys. My Aunt was the one who forced me to explore other options to my migraines. I am so glad she encourages me, as life is much easier with out constant migraines.

Congratulations, what a wonderful blessing. Remember to look after yourself during this very busy time of your life.

Thank you all for the advice. The support we all give each other is irreplaceable. I am feeling better today.

I am not a very happy person today. Last night I had my usual chest pains. I was so painful I just sat on my chair dead still and try not to even breath. It’s like having an elephant sit on your chest. The pain is intense and I hate it. I tell you I don’t know how we live in these bodies some days. I am irritated and frustrated with my body. I am going home to sleep. Sleep is the only thing that works for me. Poor Jasmine wont leave me alone this morning. It is amazing how she knows when I am very sick. She insisted on sleeping in my arms when I lay down for a few minutes before work this morning. I just hate all of this really. The worst is the pain is normal and there is no Help for the pain. The pain is so scary and I don’t even bother talking to a doctor about it. I can hear them..... "Its normal, don’t worry" It makes me sick already! Anyway my attitude stinks. Please just tell me you all have such horrible chest pains.

Next week I will start reducing my heart medication. It should take 3 - 4 months to get me off my heart medication. I am presently on 160 mg Inderal and we will slowly be reducing it until I am on nothing. I will also be stopping my Tripaleen for the Fibromy..... Tell me what can I expect stopping my medication? You all know my doctor’s want let me start my family on medication. Mario and I would like to be pregnant by the end of the year at least. Considering all my health problems plus the Endometriosis and F. tubes damaged we will be working overtime to achieve our goal this year. I have been told it is either the medication or a baby. So sick I will be for as long as it takes to fall pregnant. How long did most of you take to fall pregnant? Do you think P.O.T.S even effects this part of our lives? Going into this with a positive attitude. I will not be sick! Is all I am trying to think of. Lets hope it works.

There have been a few replies to this problem. I promise you it is just another part of the P.O.T.S. At my last Cardio check up he explained to me that the two nervous systems do not correspond to each other normally. You know that our veins do not function normally and the pins and needles, and redness is just all part of it. I get the red feet so bad that I can’t even drive. I put my air conditioner full blast on my feet and it still burns like crazy. I normally take my shoes off and walk bare foot, that helps. I need to tell you the third joy that works hand in hand with this problem. Don’t get a fright when you wake up with dead feet and hands. I often get this. Your hands can also just suddenly go dead. I guess the best advice would be to get use to it. At least it alternates from the one to the other and you wont get all three at the same time. Our bodies will always entertain us with something new and exciting. Personally I am counting the days until winter. I HATE SUMMER! EVERYTHING IS WORST!

I am having allot of problems lately with water retention. I should actually have 2 size clothes in my cupboard. I can literally be bigger in a day or two then smaller a week later again. Goodness I can’t keep up. I went to the pharmacy I have been going to for years. They gave me a homeopathic "fluid imbalance'. Apparently it is so save they give it to pregnant women and babies. Well with in 1 hour of taking 3 out of the 5 tablets recommended. I WAS DRUNK, wasted by the evening I had heart cramps and the weirdest pressure in my head. I stayed home the next day and tried to sleep it off. I cannot believe the reaction I had. I would never give this medication to a baby. Imagine? Everyone has this crazy idea that if it is herbs and homeopathic it is SAFE!! Once again I learnt a hard lesson. I know I was just being stupid. My husband asked me what I was thinking.

My beta-blocker is the most important tablet I take. I increased my dosage and had wonderful results. I can’t imagine going back to life with out my beta-blocker. I must say I was on Concor first and then changed to Inderal. The Inderal works for me but the Concor puts me in bed and makes me useless. So find the one that works for you. My morning tablet of 160 mg Inderal is fantastic. My attacks have almost disappeared since I increased my beta-blocker. I read an article on MS the other day and they prescribe beta-blocker for the attacks. So it proves my theory that beta-blockers have stopped my attacks for me. Good luck and fight your way to a healthier you. Just remember the tablet will help not cure!

Definitely see a Dietician. I know what you feel like. I gained 13 kg from Florinef last year. Food is very important and remember our bodies can change. I have a friend who suddenly cant eat certain things anymore without getting sick. Anyway she cuts these things out and is healthier from it now. Certain food can makes us fat. I not aloud sugar and my Dietician told me I would eventually gain weight if I did not listen to my body. Good luck.

Your name attracted my attention immediately as I work with insects for a living. Not that a butterfly is an insect but it is sort of in my line. Entomology department for an international research company in South Africa. Butterfly this site is great it keeps me going when I feel weird and alone. Even days were my doctor does not understand I just get on the site and talk to everyone. It is a better support system than my family could ever be. We are the same and have similar problems By the way have a Glucose intolerance test. The sugar thing sounds like you are sensitive to sugar. It is one of my six problems. All falling under P.O.T.S but a problem on its own as well. Leaving sugar changed my life allot. Sugar is in almost everything now days. Good luck and you lucky you found help so soon. It took me 9 years to get diagnosed probably. I just sort of collected the diseases and found not inner peace until I finally got diagnosed with P.O.T.S. Plus I have my own Chemist in my cuboard at home. Doctors love tablets. Now everything makes sense. I understand my body more and I accepted the daily challenges that we all live with.

The red hands and feet that sometimes go white and die or have pins and needles are all parts of the joys of P.O.T.S. My cardio... says it is all part of our bodies battling to open and close our veins in our bodies. You must also remember the two nervous systems battle to correspond to each other. I often have to drive with my air-conditioner on my feet due to the pain and burning when my feet go red. Very irritating when you driving. Shaking and rubbing my hands often helps when they die or have pins and needles.

Thank you all for the great advice! I am going to read up on the Robo vacum cleaner and try to order one for me.

Hi All Please tell me how you guys are cleaning your homes. About 1 1/2 years ago when I could not do as much as I use to I got a maid in to help me. I have gotten to a point where I can’t even touch a broom. It is ridiculous. I passed out or black out from sweeping or washing a small area. Plus the joy is I have two puppies that love my new garden. You all know how wonderful Jasmine and Dozy are to me. But with a new home and a new garden my floor is disgusting. Being a perfectionist and a neat freak does not help. Luckily Jasmine has tone me down allot on this. But what are you guys doing? I don’t have money to get a maid every day and I cannot use a broom any more. It takes everything out of me to sweep my floor. And the way I feel afterwards is not worth the cleaner surface. As for Jasmine and Dozy staying outside. It’s not happening! They are the best medication I have! Especially Jasmine who knows exactly when things are going bad for me. I am looking at getting a light hand held machine that gilds along the floor. It has a powerful suction without being heavy or requiring any of my body strength. Also no electricity required. What are you doing to clean your homes?

You going through what I call my robot body. My pain is under control at the moment and I want to tell you what medication I am on. The brufen you are talking about gave me horrible tummy problems. I eventually could not eat without feeling sick. I now take Tripaleen at nighttime and 4 Panado's a day. I hope you have Panado's in your Country. I can find out the active ingredient for you. The Panado’s work excellent. I even have the added bonus that for some reason if I take two I just want to sleep. The Panado’s work better for me than any other painkiller I have ever taken. I also go for injections when I get as bad as you are. It is a local anaesthetic injection with Cortisone sometimes. It works instantly! The relief is amazing. But I must mention I only do the very bad areas. I could keep my doctor busy all day with my painful body. What helps allot with the robot feeling is Yoga. I do it no matter what I feel like and it truly helps the joints and pain. Don’t you have a dog as well if I recall correctly. Jasmine loves doing Yoga with me and it helps to have her around when I am in pain and very unhappy. Try doing Yoga with a dog loving you from all sides. Guaranteed good mood and fun. Jasmine is just amazing. This morning again she woke me up, got me out of bed and took me through breakfast. Mornings are so much easier with her in my life. Thinking of you. Hope you feel better soon.

Thank you all for the advice. I don’t have any growths and my gyny just wants me to be patient through all of this. I am worried that you all mentioned early menopause. This will enviably affect my chances to have a child. Age and menopause age is very important. I once watched the most amazing show on Oprah about women in their 30s and gyn's who said they can wait. The menopause age is very important and the age of having children. This normally helps if you can speak to your mom about when she started. At what age did most of you start with the pre menopause problems? I am turning 27 in April no babies yet?

I am so proud of you and your family. You have no idea how lucky you are to have closure on this situation. I pray for your family to now go forward and build on your futures. As for your daughter loving arms, patients and love is all that’s needed. You a GREAT MOM and a very brave and strong women. You have my utmost respect through out this wholes situation. Shelter from the storm to all of you!

Thank you for the support. I agree with you one hundred percent. If our bodies cannot regulate temperature, blood pressure, heart rate. Why do we believe that it can have a normal menstruating cycle? I believe we have allot to learn about P.O.T.S. At least we are all learning together. I have been giving medication twice from my gyny to stop the bleeding. I am even taking the whole pill packet at the moment. After my operation in July they wanted me to stop menstruating. Well long story short. This body is doing what it wants and not what any medication or doctor is telling it to do. Sounds P.O.T.sy to me. I know the bleeding is not from Endometriosis and my Endometrium lining is very thin. For goodness sake I am only 26 and I don’t have any children yet. I just want one then my body can do all these funny things. I worry so about my lady parts. I need to use them and they are starting to act up. But most of you fell pregnant so I know I must not worry.

Today is day 54 for me. I am sick of menstruating already. I saw my gyny on Saturday and he says I have a thin Endometrium and to be patient. I have taken two bottles of hormone tablets and no change. The pharmacist can't believe it has not worked for me. The pain is horrible and I am sleeping with a water bottle at nights. I have horrible clots and it is heavy this week. My gyny is desperately trying to get my body in to a cycle. I am on Tripha... at the moment. 3rd Pill make in 5 months. You all know I have Endometriosis but has anyone of you ever had such a problem? What is going on?

My nose just starts bleeding on its own. I can be sitting doing nothing and then it starts.

My nose is bleeding allot lately. Every time I blow my nose there is blood. I thought it was due to the heat. But then you mentioned the bleeding. I have been menstruating for 54 days now. I have taken two bottles of hormone tablets and I am still bleeding. My gyny said I have a thin Endometrium and to be patient. It is like a waterfall, patient my foot. I am going crazy.

I have read that some of you comment on different "stages" of pots. As if there are different levels. That we can go from sick to sicker and then very sick. I have also understood that we might even be coming "better" at some stage. Not healed but better. The reason I wont to know is if I am at a bad level and might improve then I can wait a year or two and see what my health does. It is summer and I feel terrible. Just hoping that I might change levels in a year or two????? Is there any literature on different levels of pots?