If you go to this link you can find a copy of a documentary on POTS. I have not seen it yet but got one for myself and sent one to my parents...who still secretly believe this is all in my head.
Good luck
***edited by moderator*** web addresses not allowed
Good luck
***edited by moderator*** web addresses not allowed
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To POTS Mom - the good news is I was reassured by all my doctors that propranalol would not harm my baby and today I have a very healthy 1 year old. I had to adjust my meds in the first trimester to compensate for the changing hormones which is what you are experiencing. If the drug helped before than adjusting the meds should eliminate what you are going through right now.
The bad news is my POTS came back with a vengence 6 months after giving birth. I was Grade I before pregnancy and over 6 months have progressed to a much higher level. I have been unable to work for 8 weeks and am unable to continue to care for my 1 year old by myself...thank goodness I have an excellent husband. Please do not let this scare you...I did not get diagnosed with POTS until 2 weeks ago and I believe that if I would have known prior then I could have taken preventitive measures instead of trying to dig myself out of this cycle that seems to occur with POTS flare ups. The doctors believe I have had POTS since 24 but none of the doctors in my area were familiar with the syndrome to even check for it. I had to spend three weeks at the Mayo Clinic and even there they believed my symptoms were mainly in my head until I landed in the ER and the cardiologist noticed my heart rate change with standing.
Hang in there...I felt better during my 2nd and 3rd trimester than I had in years....something about pregnancy makes POTS symptoms disappear during those trimesters. The doctors at the mayo even kidded that I should stay pregnant...my husband and I got a good laugh out of that.
I did not breastfeed in order to continue my migraine medications but definitely discuss with your doctors on breastfeeding and taking propranalol. I don't think it will be an issue but one that should be raised.
The bad news is my POTS came back with a vengence 6 months after giving birth. I was Grade I before pregnancy and over 6 months have progressed to a much higher level. I have been unable to work for 8 weeks and am unable to continue to care for my 1 year old by myself...thank goodness I have an excellent husband. Please do not let this scare you...I did not get diagnosed with POTS until 2 weeks ago and I believe that if I would have known prior then I could have taken preventitive measures instead of trying to dig myself out of this cycle that seems to occur with POTS flare ups. The doctors believe I have had POTS since 24 but none of the doctors in my area were familiar with the syndrome to even check for it. I had to spend three weeks at the Mayo Clinic and even there they believed my symptoms were mainly in my head until I landed in the ER and the cardiologist noticed my heart rate change with standing.
Hang in there...I felt better during my 2nd and 3rd trimester than I had in years....something about pregnancy makes POTS symptoms disappear during those trimesters. The doctors at the mayo even kidded that I should stay pregnant...my husband and I got a good laugh out of that.
I did not breastfeed in order to continue my migraine medications but definitely discuss with your doctors on breastfeeding and taking propranalol. I don't think it will be an issue but one that should be raised.
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I'm 29 years old and have just been diagnosed with POTS. I'm still trying to adjust to it. I'm so tired all the time. I hate the feelings I have. I have a family history of heart problems so I kind of knew I would wind up with something. I use to take Propranalol, but my cardiologist took me off of it because it was actually doing more damage to me. So now I'm on Clonidine but it also makes me so sleepy.
I'm just so frustrated and I wish that I didn't have this. I know that I will over come this, but right now I'm just overwhelmed. My oldest son is 12 and he is very scared and concerned all the time especially when I pass out. The last time I passed out he had to call an ambulance because I had hit my head and hurt myself. This not only affects me, it also affects my kids and my husband as well.
Thanks for listening, I just needed to vent.
I'm just so frustrated and I wish that I didn't have this. I know that I will over come this, but right now I'm just overwhelmed. My oldest son is 12 and he is very scared and concerned all the time especially when I pass out. The last time I passed out he had to call an ambulance because I had hit my head and hurt myself. This not only affects me, it also affects my kids and my husband as well.
Thanks for listening, I just needed to vent.
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i was diagnosed 2 months ago after a very bad passout in the bathroom. i hit my head on the sink and droped. i have all these symptom ever since i can remember but my parents are tired of my COMPLAINT and i was told everybody get that. never went to the doctor for any kind of test until months ago. So, i learned to live with IT long before i know all my symptoms equal POTS. even my husband think i am acting....the one who watch and carried me out of the bathroom. maybe my condition was more mild then other people. the only thing that bother me is blackout and throwing up. blackout happen 2,3 times a week at most. just lost sight and hearing for few second. i just blink my eyes and stand still till is gone. throwing up, just let it go and clean it. For pain and dizzy, etc. if it not too bad i just ignore it . i hardly take anything for pain unless i need to pull my hairs. large amount of salt and water have always included in my diet. because i have bladder problem, with large amount of water in take i have to use the bath EVERY two hours and get up to pee 2,3 time at night. trust me our body can get used to many your daily life style no matter what changes needed in order to live. i have many small meal often and i am alway hungry and i eat everything, but not large meal. i felt sleepy and tired immidetly if i over eat just a little more then usuall. the doctor suggest no medicatin so far. i guess my way do no help to orther. i'll be 30 in next birthday. i hoping to have a baby. will my symptom get worse carring a baby. can my heart handle it. any advice will be great! :-D
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Wow this is really some GREAT info!! Thank you so much. I suffer from POTS, I am disabled & unable to work. I want to encourage all of you to stay positive, live life best you can & pray.
BTW, I have a group on facebook called " I'm not lazy! I'm sick D@mm!t!. I made it just to share some of the nutty comments your doctors, parents, & people in general have said about it all being in your head..
feel free to join..
Be blessed.
BTW, I have a group on facebook called " I'm not lazy! I'm sick D@mm!t!. I made it just to share some of the nutty comments your doctors, parents, & people in general have said about it all being in your head..
feel free to join..
Be blessed.
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I have been living with POTS since childhood. Your post has been most helpful. I carry a portable chair too, or I use my novis walker.
I have created a group on facebook called " I'm not lazy! I'm sick D@mm!t! " It's a place where folks can share funny stories about some of the ridiculous comments their doctors, parents, family & friends have said about their illness. It's a good place to vent.
I want to encourage you all to live life as best you can. Although, there is no cure YET, there is still life. Be Blessed. ***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
I have created a group on facebook called " I'm not lazy! I'm sick D@mm!t! " It's a place where folks can share funny stories about some of the ridiculous comments their doctors, parents, family & friends have said about their illness. It's a good place to vent.
I want to encourage you all to live life as best you can. Although, there is no cure YET, there is still life. Be Blessed. ***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
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I know what it feels like as a teen with chronic fatigue and P.O.T.S its hard and difficult to get through, but you do get through! I’ve been diagnosed since October 2010 and have been dealing with it since! I've been looking for a website to have information and support and haven't found a great one, so I decided to start my own. I've never done anything with blogging or websites before, so bare with me as I try to learn the ropes and grow and upgrade my website.
If you want more support or information visit my website blamingtheinvisibleman.blogspot.com
If you want more support or information visit my website blamingtheinvisibleman.blogspot.com
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Check out this site for more information on P.O.T.S. Made by a teen suffering with P.O.T.S who knows a bit about dealing with it.
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Your description sounds exactly like what my daughter is describing to me. We went to a Dr. yesterday and he thinks she has POTS. He wants to put her on 50 mg of Toprol How much are you an? Is it still helping ? What kind of back injury did you have - my daughter suffered a back injury approx. 1 year ago and I am wondering if this could be part of her issue. Also your links were deleted from this site, but I would love to get them from you if you still have them. Thanks!
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I was recently diagnosed with this debilitating condition about two months ago. But I believe I've had it a few years, I remember blacking out on roller coaster rides my feet are always cold I get a head rush and sleeping problems among many other things that you may be able to
Relate too. I've had bad luck with any beta blocker but I've found klonopin to help a bit with some of the symptoms but I still have tunnel vision. Klonopin isn't a fix and no drug will be. I wouldn't wish this condition to anyone. Daily living is hard. I'm not required to work because I'm living with my parents but I had to withdrawal from school. I'm not completely bed ridden but I have a difficult time walking as I start to sweat and get lightheaded and tunnel vision and blackness around the eyes. I have horrible memory and I can't think quickly. I had to not participate in my 21st birthday because i felt sick. But let's try to look on the bright side
I would say this; stay positive. I believe pots will go away on it's own with exercise and a change in diet. Buy magnesium pills and use a daily vitamin and drink things with electrolytes. Working out your legs is extremely important so push to do this even if you feel you can't. Just know this, pots is not going to kill you. The symptoms may suck but a lot of people may have it worse than you. Find a good support group and don't drop your social life.
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I was on Midodrine 5mg and it was awful (one, because the drug did not interact well with me and when I missed taking it I literally felt like I could die - and two, because it had corn in it and I am allergic to corn). I got switched to Mestinon (pyridostigmine br 60mg) and it's been a lot better so far, I don't get the bad migraines and bad pain in my stomach anymore.
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How are you doing? Have you continued with acupuncture? My daughter went for her first visit to the acupuncturist. The immediate results were amazing. Please tell me you have had success. My daughter is a 17 year old. She has been out of school for 3 months and we are in the process of collecting information from several different doctors to go to the Mayo Clinic. While we are waiting I had heard some people have had success with acupuncture. Please let me know how you are?
Desperate Mom
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I'm 25 and was diagnosed with pots 7 years ago. I was diagnosed at the mayo clinic about 6 months after becoming ill. I ran every morning, played lacrosse at my high school, then literally couldn't get out of bed one morning. I've tried tons of meds&treatments with very little success. I now get a saline infusion weekly, take salt pills 4 times a day (to help with my sodium intake, I'm supposed to aim for 9,000 mg per day), beta blockers (my pots has always included pretty severe tachycardia, but the beta blockers help a lot with my heart rate overall). unfortunately, even with all these helpful treatments I'm incredibly exauhsted all the time and have a lot of symptoms (headaches, light headed, & so on). any exertion such as exercise or being "out & about" for part of the day and I feel much worse & usually "pay for it" for next couple of days.
(one of my really random symptoms- my pupils are really big all the time, I actually had an eye dr come in & put drops in my eyes, without asking, because he assumed, based on the size of my pupils, that the nurse had dialated my eyes haha)
(one of my really random symptoms- my pupils are really big all the time, I actually had an eye dr come in & put drops in my eyes, without asking, because he assumed, based on the size of my pupils, that the nurse had dialated my eyes haha)
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My 18 year old daughter has pots and just recently had a baby. She was mot high risk, baby is awesome and healthy. She did good with the pregnancy, now that baby is born, all the crappy pots symptoms are back.
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