brownsea

certainly for me lying flat is a no-no. i get headaches and a feeling like ive been dangling upside down for too long. i would have a headache all day and feel nausea. i remember just before i was diagnosed with pots, i woke up without any pillows behind me and i felt like this all day long. now i have two bouffy pillows under me, although i fall asleep on my side, i always wake up on my back. x

currently suffering with the same problem, so much so im using a wheelchair to get around outside the house. ive been experiencing being severly out of breathe coming up for three years now. i was diagnosed with Pots last may, eds 3 this may (just had the skin biopsy to rule out eds 4). the cardiologist wants me to have a ct scan to check the heart and lungs, and an exercise test, even if i can manage only a minute to see what the possible problem could be, oh and also an injection that will speed my heart up. sorry i dont remember the names of the tests very foggy at present.

i get midodrine imported from the us, have enough till christmas. i really dont know what i will do without it, been on the pots concoction for just over a year now and i feel a lot better than i did at least i can function to some capacity each day. fingers crossed everyone. xxxxx

ive been on domperidone for the last year, like you it became so that i couldnt tolerate liquids, over the course of a month due to the nausea. my bowels were also messed up too. i was so reluctant to take meds before hand, but i felt when i couldnt drink that i had no choice, and the constant nausea kind of made the decision for me. i was taking 30 mg, three times a day, (10mg at a time), now im on 20mg twice a day. im going to cut down and see if i can manage without it soon. i also have eds. i have tried other types but they havent work, before i tried domperidone.x

i would agree that living with a high heart rate isnt good. can you take midodrine to up your blood pressure if your worried it will dip to low? its worked for me and im a little balanced with my bp now, although by no way perfect!

my nails tend to grow fast. i havent the energy, so i tend to keep them short. although my toe nails, the big toe, have lots of ridges on them. so much i now get the nail file and file the actual nail, and then paint them with clear nail vanish because i was fed up with their appearance.

i know at first its hard and i think it has to do with having a rare illness. ive had a few comments along the way, in the beginning i took them to heart. now i just smile, some people really dont understand, others however have issues of their own to deal with and are putting all their problems on to you to deflect from themsevles. its like liars never believe people because they know they lie themselves. so look at little more closer at these people, i did, and they arent that truthful so expect you not to be. when this does happen try if you can to do something nice for yourself or others, i have and it works sometimes. we all know how awful this illness is on our bodies dont let some silly person make you feel worse. xxxxx

you got to laugh.xx

sorry for your loss bella mia. you little granddaughter sounds delightful, hope she gives you lots of cuddles. xxxxxxx

40mg of proprananol, along with the usual fludro and midodrine. i was extremely lucky as i was ill in hosptial with pots, ( the docs didnt know what it was initially) and i took all the tabs within two weeks, along with paroxentine to balance out the autonomic system (that made me feel a little nauseous) and domperidone for the nausea i was experiencing. i had the odd side effect the tingly feeling in head but not much else thank goodness.

im glad i didnt see him. what is he talking about?! im pleased i wasnt referred to him, im being seen at kings at present, where i had my tests done. dr d has been extremely helpful from noting down that i should be given extra time during tests, to explaining things in detail. im sorry you have had to go through this. i do think in perhaps ten twenty years time pots will be recognised more and this silly labels wont exist anymore. xxx

ive been experiencing this way before i knew i had pots. my body knew what to do. once when i was fifteen i spent the day in venice, after tolerating the august heat, and crowds quite well i had to ride back to the car on the vaparetto (water bus). it was quite crowded, i came over funny, which i was used to, so i just sat on the floor. i got some odd looks, but i just knew i had to do it. its not until last year that i was diagnosed with pots, that i realised what was wrong, and what my body had been telling me all these years.

hi, im too finding it difficult to see this way of life is my life now. hope coming on here and chatting and finding out how others get through things helps. its certainly helped me. xxxxx

hi rach as the others have said its so difficult to get a doc to take you seriously at first. the assume things then carry along that line so getting help is extremely difficult. you will get there in the end, im really sorry your feeling like this at the moment. i was there last year and went private. ive also just found out what is causing my pots symptoms again i went private to find out. keep writing this is a great site for help and understanding. emmaxxx

hope you start to feel better soonxxxxxx

i had a bad episode of what i now know is pots when i was sixteen. a year later i had to have a filling, and i opted for a white one due to the amount of sore throats i was getting at the time. thats the only filling i have and i experience a bads pots crash last year, they finally diagnosed pots. i think they do metal fillings do affect some people, like peanuts do to allergy sufferers. xxx

water and de-caff tea, and a couple of mugs of caffenine tea per day. iwas advised to take lucozade sport,similiar i think to gatorade. i just cant tolerate the sweetness.

rene, hope you feel better soon. xxxxx

im off for my 9th b 12 shot tomorrow. i have them weekly for 10 weeks then once a month for a year. i havent noticed any difference at all, but the doc did say this. the first few weeks i thought maybe i would take some time to feel different but alas no. im sure it works differently for each individual, also i havent noticed any side effects. just a little painful at times when the shot goes into your arm.x

i get this. much worse in the beginning three years ago, now its settled a little. although i still get them.

certainly when the weather changes, for a few days i will feel unwell, more unwell than usual. chest feels tight, and more out of breath standing. after a while it eases until the next season.

ive had a sore throat all week, due to swallowing and getting a tablet stuck in my throat, it felt like it burnt my throat. however this past week ive also felt on edge with the sore throat. yesterday i was suppose to go to the shopping centre, when i was near the entrance i came over all panicky, and couldnt go in. ten minutes later i was ok. i know it wasnt a panic attack because my pulse was 44bpm. im sure its a funny thing that pots is dealing me right now. xxx

sorry you are going through a tough time at the moment flop. hope you better soon, plenty of rest. xxxx

i havent showered in ages!!! urgh. i bathe each night. when i was really poorly i would bed bathe, and i couldnt wait to have a bath. literally the first bath i had was in wash out, as i couldnt sit up for long. now im able to bath for around half an hour which i love, i still have to remember to not have the water too hot, otherwise i feel ill. i used to shower twice a day when i was well, especially in the summer. i miss showers, but one day.....

hi melaine yep thats the man. i was referred two weeks friday, so im waiting for an appointment, hopefully it will be soon. im better than i was last may, with the combination of tablets that im on. unfortunately i cant do much, but i have very gradually improved little by little. im on midodrine, and with out that and beta blockers, and fludrocortisone i wouldnt be able to sit up or go out, luckily i never had side effects on them. let us know how the appointment goes next week, thanks. emmaxxx