Courtney812

I am wondering how you can have both POTS and CFS only because to have cfs the fatigue can not be caused by another illness. And POTS (which causes fatigue) is indeed another illness. Pots causes extreme fatigue in my opinion with the heart rate shifts, low blood pressure among other things. Can someone please explain this to me better?

Well I had the million dollar work up while hospitalized. They mentioned a pacemaker but the EP thought id grow out of this in a few years he said... The neuro seen a white spot on my brain but said its most likely nothing Ive had about 4 echos... because at first I had a leak in my aortic and pulumic valves... one mild one moderate. However over time they are both now trace. I have a lot of symptoms of dysautonomia though like flushing, temperature regulation issues etc. Im 24 and this all started when I was 22 with a one year remission. Atm. My laying blood pressure is 107/56 pulse 67 Sitting 114/71 pulse 93 Standing 104/68 pulse 119 So my pulse is positive for pots. I also have a killer headache right now. And now I have a new cardiologist and im seeing him again tomorrow and ill be requesting another Ttt, echo and 24hr monitor My last TTT I was 43bpm laying and 160 when tilted up with slight fall in blood pressure. Right now im dizzy even in bed because my pressure is lowish. I dont understand why it went away with no treatments and now its back full force. This isnt like PAF right??

Moons only on thumbs and vertical ridges as well

Oooooo pumpkin!!! Mmmmm. Fall last year was amazing... but I was in a year long remission Now im in a flare so hopefully fall ill be a happy camper again

Oh I am on cpap therapy for mild sleep apnea. And I would assume I wont get.much help with meds because my heart rate and blood pressures are everywhere. My poor daughter who is almost 4 has a couple problem I hope resolve with time. She has geographic tongue which she got from daddy She has very mild CVS twice a year. And her elbow popped out 3x as a baby but hasnt in 2yrs. We were.told its common in children.

So lets start at the beginning but keep this as short as possible! Since I can remember I've had issues exercising but lead a normal life. But things changed. After the birth of my first child I had a very fast heart rate of 187 and this tachy lasted almost 2 months but I got fully better. After my second daughter I was hospitalized for 3wks with brady and tachy. As low was 32bpm and as high as 180+. I had flushing, temp issues, gi problems, high and low blood pressures. However without meds I slowly got better again.. took about 7-8 months. Then I went into a sort of remission for a year with mild symptoms around my period. And one or two day crashes. But I traveled, ran and felt good. Well... a week ago I fell into the biggest crash since her birth. Flushing, low heart rate, high heart rates, blood pressures everywhere, flushing, headaches, dizziness etc. I am trying the zyrtec zantac combo and it does help relieve panic feeling and help me up. I sometimes feel better if I keep moving... and sitting and laying I feel worse. But standing I do get dizziness and fatigue. Other day hr was 50s sitting and 114 standing so I def. Meet hr for pots. But can this ever get better and go away for someone like me. I dont think I have eds because im only flexible in like one hand lol I dont have skin problems, bruising issues or anything like that. How in the world can I make this go.away for.good (billion dollar question isnt it.)

Time has helped me... After my first child it was better quickly like 2-3wks symptom wise I was 100% better After my second child 11wks ago I'm still not 100% but I have improved about 75%. I was hospitalized and bedridden now I'm fully functioning. I have fatigue and headaches but I found out I have sleep apnea and got my Cpap machine today actually so that should help my fatigue and headaches hopefully. I had symptoms in pregnancy like low blood pressure. But now my blood pressure and heart rate are all over the map. But like I said I have improved a lot.

Anyone?

I suspect my first flare was after my first child lasted 2-3wks and wasn't that bad. This time after my second child it's been 10wks and I'm still not 100% but this time a moderate aortic leak was found. But I was bedridden for about 2wks, now I'm nearly fully functional but have daily chest pain,headaches, and other issues.

I have Brady and tachycardia. But I may not have POTS I'm not 100% sure even though my HR does meet. During my TTT I went from 43bpm to 116bpm within 30seconds. I stayed around 95-100bpm for 30mins. My blood pressure only slightly went down. I felt fine during this. I have a moderate aortic leak which may be causing my Brady and tachycardia... So now I'm thinkin maybe I don't have POTS? Before I was having flushing, feeling of panic or doom, headaches, insomnia, short of breath, dizziness. Thing is almost all that is also symptoms of a aortic leak/ regurgitation. So... I wonder... Do I have pots? Or is this all my pesky aorta or is it both... I thought heart problems had to be ruled out to have POTS. (This all developed 10wks ago after I had my second baby, and has gotten better, but I get more chest pains and stuff around my period)

I have Brady and tachycardia. But I may not have POTS I'm not 100% sure even though my HR does meet. During my TTT I went from 43bpm to 116bpm within 30seconds. I stayed around 95-100bpm for 30mins. My blood pressure only slightly went down. I felt fine during this. I have a moderate aortic leak which may be causing my Brady and tachycardia... So now I'm thinkin maybe I don't have POTS?

Just called his office, he is not accepting new patients at this time. I remember calling him yesterday as well (front desk person named princess haha stuck out to me) I really wanted to go to him, sometimes when they say they aren't accepting new patients at this time I just want to ask to speak to the doctor and beg for him to take me on as a patient

Hey Kate! Lol I finally joined dinet. Hopefully the next meeting I'm not sick (with a chest cold) I STILL have it 13 days now!! I picked up a antibiotic today, mucinex just isn't cutting it.

Chest pain. It *****.

I put about the same, but in some ways I'm better in some I'm worse. My cardiac symptoms are worse (but I also just found out I have a moderate aortic leak so that's why those symptoms are worse I assume)

Well I got my blood work for ANA-lupus, RA, Lyme, diabetes Just a few more things I want to rule out And also getting my liver & kidneys checked plus b12 and vitamin D.

Also thanks Dave. My mom passed away when she was 38 (had SO many health problems but also didnt take care of herself) So im just trying to find my answers.. in just 9wks ive had all those test done, the sleep studies plus now im about to start going to a neurologist to see if i have small fiber neuropathy, or any other neurological causes.

I dont know if its matters but im not flexible and my skin is not thin (i know a lot of people with EDS) I'm going to my primary doctor today to run some autoimmune test like ANA and some others. What test do i need done to look for EDS in the vascular form? I actually just looked it up and honestly none of the characteristics fit. I have thick lips, dont bruise easily at all, i'm fat (keeping it real lol), im not pale, well you can see me in my avatar picture to the left. Also all up until 9wks ago i had no idea i was this sick... and its a lot to hand at once as far as the possibility of open heart surgery soon. Its so hard to imagine ALL this came on 9wks ago suddenly and i had it before the baby too (like eds if so) its hard to believe when i felt PERFECT before i was pregnant. IDK about EDS because my joint pain really can be just postpartum, or it could be autoimmune (lupus,lyme, even arthritis) I live in Orlando Florida, my current cardiologist is less than good. He is a liar (he never asked me about my symptoms but he put on my report that i didnt have joint pain, i didnt have shortness of breath or palpitations.. and actually those are my BIGGEST daily symptoms other than chest pain... ) He also does surgery at bad hospitals, so rich gave me some information and i found out a local hospital "Florida Hospital orlando" is ranked 23 in the nation for heart hospitals/surgery. So now im looking for a better cardiologist (my 2nd opinion as well) that works out of Florida hospital orladno.

i also have coat hanger pains. But once again, i just dont know whats causing what. Ive had exercise intolerance my entire life, but i also dont know how long ive had these murmurs so maybe it was pots, maybe it was murmurs but idk.

So ive been talking the ear off a few dinet members on facebook (rich.. thanks buddy 100x as always) and lurked for 2 months now and finally im joining. I have a lot of questions so please bare with me, and if you can answer some. 9wks ago i had my second child and started fainted, i have high and low blood pressures (most of the time though my issue is narrow pulse pressure) i also have bradycardia and tachycardia. It has been as low as 36bpm, and as high as 187. During my tilt table test laying down it was 46bpm, then they tilted me up and it was 116bpm. my bloodpressure also dropped but not to far. I have daily headaches, chest pain, numbess in my forearms and feet, arthritis type pains in my hands/feet and back. Flushing, dizziness, lighheaded, shaking, cold feet/hands but hot face. the list goes on...but im sure you all understand where im coming from and going with that. I also have horrible heel pain, numbness/burning in my hips and arthritis pain in my feet, arms, wrist, knees, fingers... ugh. the worse is my freaking foot though!! I was admitted to the hospital for 4 days and had a lot of test which at the time showed nothing other than one small white spot on my mri and one VERY mild murmur. i had brain MRI chest, head, abdomen CT scan EEG chest xrays echocardiograms multiple EKG thyroid test After my hospital stay i had 2 sleep studies and now i found out i have mild sleep apnea (6 per hour so its very mild, i get my CPAP machine soon) and i had another echocardiogram, 24hr monitor, TTT, exercise stress test. my exercise stress test showed Sloping, so on the 15th i have a nuclear stress test. Also this second ECHO showed a moderate aortic leak and a mild pulmonic... So now im worried... they are talking about open heart surgery for my moderate aortic leak (he said within a year). I honestly wouldnt even be scared if it wasnt for the fact i think i have dysautonomia and i personally think its autoimmune fueled. So im afraid i either wont make it through surgery... or the POTS and OHS will send me into a tail spend and ill be bedridden with dysautonomia. but honestly my chest pain and shortness of breath is getting A LOT worse.. now any time i stand my chest hurts, i can hardly walk because its hard to breath so i dont know what to do, well i know what i am doing... my cardio ***** for details i dont feel like explaining but im sure all of you have dealt with a doctor like him. So now im on the hunt for a new cardio who CARES about my symptoms (instead of saying im young? yea and young people die all the time! im almost 23 by the way) and a cardio with better reviews and does surgery at a highly ranked hospital. I am afraid... can yall please help.. how is surgery and dysautonomia? How is it with a major surgery like open heart surgery? Also i dont know what caused my pots, after i had my first child i had 2 weeks of tachycardia ****... laying down my heart rate was 160's. and then bam it went away one day! This time its now 9wks out and im still sick! could be a longer recovery, but also i have these new found heart issues. also could this all be heart issue related? and i might not have POTS at all? i have 30bpm increase (nearly 100bpm increase!) a lot of my symptoms seem like it could be the heart issue (fatigue, shortness of breath, chest pain, headaches, palps) thats all symptoms of my regurgitation.