Post

I Need To Find What Helps Other People With Pots

I have been diagnosed with pots about 6 months ago but I have had symptoms for the last 3 1/2 years and before that I was diagnosed with chronic fatigue and fibromayliga after I had to have knee surgery when I was 13. So since then I have dealt with dibailltaing pain and fatigue and doctors tell me it is in my head.. I had my daughter at age 21 and after that I got even sicker..I have had to rely on my husband to take care of me.. Then 5 yrs I entered a drug trial for fibromyaglia and I got even sicker...About 2 months in to the drug trial I had to have knee surgery (2008) then 4 months after that I had to have my gallbladder removed (2008) then I had a horrible time with my stomach I could not keep food down and I dropped 20lbs and I was only 120lbs to begin with. Then in the 2009 I made multiple trips from VA to NY which is 10 hrs with my 2 yr old daughter bc my grandfather was dying after 6 trips in a 6 month period we received unexpected news my 29 yr old cousin died and then a month later my grandfather passed away.. Right before I went to my grandfathers funeral my heart sky rocketed to 130 and was staying there... I started to feel worse and worse I was so angry, and I couldn't sleep at all I would be up for 5 days straight I started seeing things, passing out, hurting even more than before, insane headaches, I thought I was dying after 5 months the found out I have graves disease (hyperactive thyroid). So they started treatment and I had so inprovement I was as angry I had stopped losing weight I leveled out about 95lbs. But I was left with dabilating headaches, I could think straight, I was throwing up all the time I had hot flashes and my hand and feet would go numb and be so cold I couldnt stand it. My heart was still tachy and my hair was falling out... pain in my back, pain in my chest, blacking out after multiple er visits and multiple symptoms I keep getting worse i couldn't do anything with out my heart rate going so high as 185 at times so the last 3 yrs they couldn't figure out what my problem was. After a visit to the er 6 mons ago and an angry conversation with an ER doc they referred me to yet another cardiac electrophysis...that makes 5 and 1 telling me I was crazy get out of his office... My lovely doctor me I had POTS but then the major problem come I cant take beta blockers bc I was on them for 3 yrs and it didn't control my heart rate and It caused my blood pressure to get so low I was going to die...so I am just about bed ridden with throwing up, pain in my back,pain in my chest, trouble sleeping, insane headache, blurry vision, pressure behind my eyes, passing out when I stand up, body tremors , weakness,ibs, fatigue,can't think and lots others...I have a husband and a 5 yr old that need me but i can't do alot any more.. I am 27 yr old and it is getting worse so I need to what has worked for other ppl my doctor will look at whatever I bring him and I will be having a hysterectomy in the next month bc I also have endometrois and ovary cysts...I am not asking for pity or anything but some ideas as to what will help..bc I do not give up I havent given up yet and I refuse to I still try to keep up on house work take care of husband when I can, help my daughter with school and attend school functions and help with the book keeping and other aspects of our construction company..it just is getting harder everyday and I need relieve of some kind... So anybody with any ideas or know of a doctor that has treated this I am willing to travel.. please help
sicksince13 sicksince13 26-30, F 4 Responses Nov 18, 2011

Your Response

Cancel

@sicksince13 Our clinic in Dallas has a treatment program for POTS patients. We help treat POTS symptoms by training you to regulate your Autonomic Nervous System with computerized medical equipment, thus getting to the root of the problem. Check out our video testimonials of former patients on our website at potstreatment.com. If you have any questions please feel free to call us at 214-369-8717

We done lots of research and I created a website biased on my experiences www.aviationsupplements.com I hope it helps

hang in there with this, POTS always gets better and worse all the time so keep that in mind. You are"NOT" crazy, none of us are. I say it all the time and I will say it to you. Doctors and some people think we are crazy because they cannot even begin to fathum what having these symptoms would feel like, litterally, let alone function with them. I personally think it shows how stable we actually are considering how well we cope. Anyway if you use my link to look within my circle you will find a lot of awsome info and tips on fighting and coping with this. We seem to be developing a nice network, when lots of people share what they have, know, and need to know its really helpful. Oh, I dont know why they want to do a hysterectomy but I would absolutly get a second ans third opinion. Once they do that, your hormone levels are gonna be all over the place, that and any medication they give you to regulate them are going to impact your POTS. Be your own researcher and advocate, cause your doctor usually is not. I to have polycystic ovarys, luckaly the dont cause much trouble for me though I am on medication for it, bc pill and aldactone. I hope this helps you some.

hang in there with this, POTS always gets better and worse all the time so keep that in mind. You are"NOT" crazy, none of us are. I say it all the time and I will say it to you. Doctors and some people think we are crazy because they cannot even begin to fathum what having these symptoms would feel like, litterally, let alone function with them. I personally think it shows how stable we actually are considering how well we cope. Anyway if you use my link to look within my circle you will find a lot of awsome info and tips on fighting and coping with this. We seem to be developing a nice network, when lots of people share what they have, know, and need to know its really helpful. Oh, I dont know why they want to do a hysterectomy but I would absolutly get a second ans third opinion. Once they do that, your hormone levels are gonna be all over the place, that and any medication they give you to regulate them are going to impact your POTS. Be your own researcher and advocate, cause your doctor usually is not. I to have polycystic ovarys, luckaly the dont cause much trouble for me though I am on medication for it, bc pill and aldactone. I hope this helps you some.