My Pots Story..

I had my first pots symptoms in 1996 during pregnancy, maybe before, but I almost fainted every time I got up on my feet. I have also EDS and Cronic fatigue syndrome (CFS/ME), and more...have had a hard health story...much pain every day, and am now waiting for diagnosing POTS, but I know that I have pulse and heart is jumping as a horse..the pressure is low, and sometimes high..but the most time very low...pain in the heart..

I have to sons with EDS, oldes have also ADHD and Asperger, he is one of a kind, like a genious sircus artist.. and my youngest have migraine, like me, his neck pain a lot, like me,  and I think he also have POTS..He is 14.. It looks like either it is more in the internal organs in the body, or external.. and more hypermobility..anyway is is like that in my family.. I also have a braintumor now... and was born with a connective tissue tumor on my knee..and in my twenties I had several surgerys to remove tumors in my ovaries, and also removed my uterus...had endometriosis in 11 years..I was better after these surgeries..but several other probems escaletad...stressed...burned out...fatigued... Cronic fatigue syndrome... I am mostly bedridden, but try to accept the every day life, and try to stay positive, and be grateful.. It is hard, but necessary, to keep going...
norwaymom norwaymom
41-45, F
5 Responses Mar 16, 2011

thank you so much for inspirational comments! :-) I have also reactions to chemicals, smoke, gasolin, etc. Migraines, neck pain, nevropathic pain and numbness in hands and feet. Heartproblems with tackyardia and in periods pain in the heart. I have also gastric trouble with reflux, and low gastric movements, so I am cronic constipated.<br />
One of you told that your pots-problems was over after 26 years old? What happended? I need to know more successtories from others, to learn, to have hope, and to be better. :-)<br />
And one of you wrote about mitochondriac something...I need to read more about this condition, what it is, also to learn. To be better. Maybe this can "match" me, and give some answer. I guess that EDS is the reason of my other health issues.<br />
Next week I am going to a health centre with my youngest boy at 14, it is for youth with hypermobility and cronic pains. Maybe this can give something for us as a family, but I am also afraid that I will be more ill, and that it will be too hard program for me to follow. The program is for the young ones, but they expect that parents follow their kids.. Hope I can sleep, have my few daily rests... I think it is hard to handle, to be a good mam, and also be ill, and almost want to lay in the bed, or in my resting chair, most of the day... I need energy!! Anyone of you had a b-vitamine-injection with positive results? Anything else to get energy when you are cronic ill?

wow, i hope to be as positive as you are once again, ive found the discovery of a second major illness very difficult to accept, i also have a lot of other issues aside from POTS which i was recently diagnosed with, i also had major surgery to remove an enlarged tumor in my ovary and they damged both of my tubes and removed one, ive always had a lot of issues that i now see add up to autonomic nervous system dysregulation but was only finally diagnosed with pots a few weeks ago my doctors suspect my POTS started after my first major surgery which was when i was only an infant, i know it can be really difficult waiting for your official diagnosis especially when it adds up so clearly to you, hopefully it will happen soon:) i truely hope your situation improves:) hang in there! - i would love to hear it if there is any good news!:)

OMG you sounded like you just described my family. Women in my family tend to have more health issues but almost every single person in my family has health issues and there are mostly females in my family on my mothers side. I am going to print your post and take it to my doctor. <br />
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Thank you so much for responding.<br />
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It is such a huge help and comfort. <br />
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You should look into mitochondrial disorders... Check out UMDF.ORG. Our family is being checked for it... My mom, daughter, sister, her daughter, my maternal grandmother and I all had EDS hyper mobile type and lots of other symptoms. Mito causes you to have medical issues in several body systems and autonomic problems like POTS is common. There is no cure for POTS, but there are treatments that can help improve your life. <br />
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In our living maternal line of 25 people, we have about 6 cases of POTS, 5 cases of EDS, 1 case of MS, three suspected cases of MS, 1 case of Lupus, 1 case of Scleroderma, huge percentage of depression, gastrointestinal issues, everyone had GERD, many nerve dysfunction issues, migraines on most of us, intrinsic asthma, mild scoliosis, spondylosis, learning disabilities, ADHD/ADD, Asperger's syndrome, strokes or TIAs, fainting, overly sensitive to chemicals, etc...<br />
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I had POTS from the time I was about 14 to about 26. My 13 year old daughter just developed it shortly after she started her period... I think hormones are responsible for triggering it.<br />
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Good luck.

What you've said is so true like just try to stay positive and like perservere just much to many times we as human being instantly think oo its getting hard so we quit! Well as people who have pots we have to work just that much harder because we burn like twice as more energy as a normal person does. But u have an amazing story and i hope u, and ur family many cheerishable moments.