ana_22

happy for you ernie! come and visit from time to time!

Ok i need some opinions / thoughts. i had some vestibular tests today, hearing was perfect, well all were ok except for one. i think its called the caloric test where they put hot air and cold air in your ears. anyway the lady doing the test said that there was significant nerve damage on the left ear and that that would be making me feel unstable. so i have a piece of the puzzle. i see my neuro in a couple of weeks so she may have more info. but what the lady said today is that damage is permanent but you can do some exercises to help retrain the brain. now all my symptoms started together a year ago.....dizzy, nausea, tachy, no appetite, GERD, light headed, OI (without BP drop) i aslo get blood pooling in legs and arms if im standing. so some symptoms can be attributed to the vestibular damage others cant. so my question.....do you think my dysautonomia could be post viral, as in a virus damaged my ear and also my body? could this type of ear damage be autoimmune? or could it be pointing to other things? this is the first test ive had that has come up abnormal!!! eveen my TTT was ok (HR only to 102) so they diagnosed pots only by symptoms. anyway today i see my GI doc after the scope i did, hopefully everythings ok there. just wanted to get others opinions and has anyone else had a caloric test that showed weakness? thanks

i get this...! only when im upright, never when im laying down! mine kinda fixed up when i cut dairy and fruit out. improved not completely stopped!

i hope tearose is ok and only in hospital for a minimal amount of time. please send her my best......im sending healing thoughts for her xxx

i dont faint....

if eating is worse because of pooling, does this mean miodrine can help GI issues as it constricts blood vessels?

i had it done by a traditional DR. the values that were high were only slightly high. though i had one value that was 0-2.0 range and i got 2.9 i think thats a significant high since the range is so low? Broken shell- was this the test that tested for 30 something different things?

there was a huge post about this a few months ago with many ppl experiencing this phenomenon ! personnaly when i get the flue im bed ridden and feel dizzier than usual

no i didnt self test! my gp ordered this test but my Gp is not sure of how to interpret them....so my gp is sending me off to an endocrinologist. now im not sure even if this is the endos field.....my appointment is for 3 months....i dont want to wait the 3 months and then have him tell me he doesnt know how to intepret them!

yeah im sensitive to light too, natural and artificial. im not sure if this helps but i know there is a genetic disorder when you are allergic to the sun (we learnt a bit about it years ago in school) sorry i cant remember the name of it was so long ago!

i hate DRs like this. No DRS are certainly NOT GOD but they have had years of education and practise and experience, SO yes i think you are not being unrealistic when you look to them for GUIDANCE AND ADVICE. these kind of Drs give other Drs a BAD name. i would take up his offer and go to cleavland clinic. see how these test go first. good luck.

hi, has anyone had this done? i had one done recently and a few things were a little high and some were in the higher bit of normal. what kind of specialist can interpret these results? does anyone know anything about this test? has anyone had this test? should i be worried if some things are a little high? I forgot to add thiss is the test that looks at bacterial dysbiosis markers, yesast fungal diabosis markers, citric acid cycle metabolites, ketone fatty acid metabolites, neuro transmitter matabolites. even if some one could point to info on the net for help with interpereting results ive had a big search and cant find anything too helpful

yay! lets hope tomorrow is even better

drink as much water as you can before gettin out of bed.

you should get a complete blood count and test your serum vitamins if you re worried about malabsorbtion.

hold on...something will CHANGE soon....the only thing we can count on...CHANGE I know its awful! at the moment my issues are light sensitivity and migraine while eating and after eating (just when the FLORINEF was helping my never there appitite and concrete feeling stomach). im hoping this will change soon. arghhhhhhh pots *****......

^ is thatlike olive leaf extract that you can get from pharmacies?

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? yes i can see it and cardio has said that there is pooling 2. Have you ever been diagnosed with EDS or suspect that you may have it? never been diagnosed with it, not flexible / stretchy. but who knows? 3. Do you experience symptoms when lying down even after a night of sleep in your bed? yes 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? have not been diagnosed with it, havnt asked my cardio about it. i rarely have high bp so i think i dont have this form. 5. Have you ever been informed by a doctor that you have low blood volume? no, i dont think we can test this is australia? 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? i have a lot of gastric symptoms. some drs have suggested IBS. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? no. i have cold hands but usually visible veins. 8. Did your POTS arrive suddenly? kind of. was feeling not quite right for couple of months but could still work/function/socialise/eat/walk/ just thought i was a bit stressed from work, didnt have cardiac symptoms. became disabling suddenly 3.00pm on a day in Mach 2008. 9. Is your skin pale? very 10. Please the top 6 worst symptoms that you experience with POTS: constant light head dizzy feeling no appetite nausea sensitive ears (to noise) cant walk long disances (more than 100 or so mertres) weakness

I did it without sedation! just a little spray to numb my throat! it was the strangest feeling! but i did it!!!!! thanks for all your advice xxx

Before POTS i could fall asleep within 1/2 to 1 hour but i would sleep all through the night from 10pm to 8pm, i could even sleep till noon (i was at university!) Since the day i crashed into POTS i find it hard to fall asleep and stay asleep, i often wake up 3-6 times a night. And i get up very early 6am.....i have no need to set alarms cos i know i will be up! previously i needed an alarm set all the time!!!! i cant even dose off during the day.....impossible....have not done it for a year. i used to LOVE my sleep and now even thats gone.....i think it would be easier for me if i could sleep....cos then i wouldnt be conscious to my symptoms as much! i hate pots.

thanks for your thoughts and comment...im going to speak to the drs before the procedure, i think ill tell them i want to try without sedation but then i i need it to have it. i just wonder how long it will be.....i dont want to be awake for an hour or even half an hour with a camera down my throat.......15 minutes may be do-able! thanks...i will let you know how i go! xxx

hmmm thanks for the reply! i had this proceedure done with a colonoscopy a year ago when i would say i was slightly worse and the sedation was ok.....but then i was pretty sick so i wouldnt have known if the sedation had made things worse....plus it was early days only a few weeks with POTS so i didnt even know what was happening to my body! i think the sedation they give you does not put you fully out it just makes you not remember what has happened. is this type of sedation bad for pots? would it be the same sedation they give you when putting you out for wisdom teeth removal? looks like ill be having a long chat with them tomorrow.

sometimes i get really light headed talking. this usually happens when im standing and talking. sometimes when im sitting.

im having a gastroscopy done tomorrow. ive been reading through the brochure and it says you can have it without sedation, so they will only use a local anesthetic on the throat. has anyone done this? is it uncomfortable? how long does the procedure take? i can discuss all this with the dr giving the sedation tomorrow but i want to have some idea of what i would prefer. i really dont want to be fully sedated as i know it can cause problems for ppl with POTS and CFS. but i dont want to not be sedated and then freak out when the camera is down my throat. what would they do if i did feel uncomfortable? and would i feel them taking the samples of my stomach? thanks!

Try drinking 2 glasses of water before getting out of bed. whilst we are sleeping we dont drink (obviously ) so you may need that boost iin hydration to make it a bit easier on your heart?