ana_22

I thought you could do other autonomic tests such as the vaslava (? spelling) and breathing tests and sweat tests? i thought the TTT was only for POTS, Syncope and forms of OI?

just wondering what kind of specialist i would need to get refered to to check for EDS. I am in Melbourne, australia. has anyone on the forum been diagnosed with EDS and is from Melbourne. i'm just trying to find the cause of my POTS and wondering whether to explore this avenue.

just thought this article may be useful for anyone with gp. Maybe giving mirtazapine a go? http://psy.psychiatryonline.org/cgi/content/full/47/5/440

how did you go with it?

hope it all goes well xxx

Try dry skin brushing and lymphatic drainage massages. i read an article somewhere that cellulite is caused by the lymph not being able to expel toxins

can you have an autoimmune disease without a high ANA? reading the Autoimmune Epidemic at the moment......interesting stuff. just wondering whether my pots could be autoimmune.....had ANA bloods twice they have always come back low. does ANA determine every autoimmune disease? could my POTS still be autoimmune? how do you know if POTS is autoimmune?

ME does check this site out http://www.ahummingbirdsguide.com/

All the best! I hope you get some answers that help you!!!!

Thats really

my auntie had a pressure reading of 230/110 the other day, no stroke. she does not have pots. just saying your spike in pressure should not be a concern until you seee your dr next. hope that makes you feel better

hi, just wondering if exercise has made anyones condition & symptoms worse in the longrun. i mean exercise aimed at getting you reconditioned, not going off and running a marathon! thanks

ill def be praying & hoping you will get some relief, i know how awful constant nausea is. hugs, xxx

hi, ive been kinda tachy for the last 5 days laying down (and not the usual upright) ive been running 100-125 lying down im ussuallu 85-95. is this normal for a potsie, should i be concerned. i cant talk to my GP or cardio till tuesday. just after a bit of advice! (& reassurance of course!)

I read somewhere that Greg Page's (AKA the yellow wiggle) OI was due to his body not retaining salt........has anyone any idea of how this would be measured?

Grrrrr **** infections! hope your outta there ASAP! xx

hi ernie, i dont have any suggestions, but i wanted to with you the best for your trip and hospital stay. i hope it brings you many answers, that will help you and the POTS/DYSAUTONOMIA community! ana xxx

my first cardiologist that ordered the 24 holter said it was normal....except my hr didnt go down while i slept. the holter was done while i was feeling my absolute worst (well almost my worst) since seeing him i have changed cardios to one who specialises in pots and i had to get all my results from the previous cardio. now i dont have them with me as ive given them to my current cardio (should have made a copy) BUT i glanced over the results and saw that for the nighttime hours my HR was from 70-138 t night!!!!!! i have to admit i probably got up 2 or 3 times to go to the toilet and at the time i was suffering from terrible broken sleep.....but still how could this be normal!!! he even went on to say my holter was not indicative of someone with POTS. even if it didnt indicate pots im sure it would indicate for further investigation anyway i havent asked my current cardio about it yet. shes soooo much nicer. she even kinda did a little laugh when she found out who my previous cardio was saying she has a few patients that have seen him prior. Was going to tell her my experience with him but i think she knew!

I'm having this problem too.....its not fun... im becoming tachy after eating, even when im lying down. i dont know what to do....call the gp? call the cardio? arghhhhh its sooooo frustrating.

I think you should consider staying home and not pushing it with your health until you get back from Mayo and hopefully find helpful medical interventions. I'd be a bit worried pushing it too hard and then falling into a major pots hole, which could be difficult to get out of! Maybe while your at home you could investigate new ways of earning an income, say selling things on ebay or making things and selling on etsy or working from home a couple of hours a week tutoring something you're knowledgeable in. If you're not working some of your expenses linked to work like car petrol/bought lunches will decrease. I think your health and family should be your number one priority and that rest and recuperation may pay off with a little better health in the future. I cant work at all and am thinking about selling crafts on Etsy. Financially I'm ok and am being supported by family. I know im not going to return to work until im 100% or at least 95%. Ive been in a major POTS hole and dont want to risk getting worse or it happening again. SO for now I've decided my job is to be the CEO of my health and getting me back on track (hopefully). I would rather be poorer than have my health get worse than it already is. I know everyone is different, just my 2c. Hope you find what works for you best!

what about asking your employee whether you can get into a more clerical kind of role (sitting down most of the day in air-conditioning, hopefully) I mean they already know you, eliminating the interview. You could do a short course to gain necessary skills to work in another department of the company.

Thats great to hear! I'm still keeping the positive thought coming your way! And you should totally write a book!!! I enjoy reading your posts and you are one of the most articulate people I have known! I'm glad you are doing relatively well.

correct me if i am wrong....but i think i read somewhere that chronic fatigue patients measure their temperature when doing things and if it has fallen this means they are overdoing it? i vaguely remember reading this somewhere...has anyone heard of this technique?

yeah i'm kinda ok in the shower most times now..as long as its not steaming hot. like ramakesh i feel the worst after the shower, as sometimes i could spend a whole 15 mins standing in the shower.....very weird i know. when i first got ill i had to sit down whilst taking a shower. i only showered once a week as it was physically impossible do it more frequently.......i didnt care i was in bed all the time anyway! my biggest problem in the shower now is pooling....... my legs are shades of purple and bright red!!!

ummm wow! has anyone tried this? I wonder if this is applied early on in POTS, whether it would be benifical? I have a big bouncy fitness ball and a mini trampoline....feel like giving it a shot now but am feeling dizzy and that may make it worse! ill give it a go tomorrow!