Lindsay Mold

This is really interesting. I didn't realise that pots often starts with some kind of virus. I have only just been diagnosed with pots but i know that ive had the symptoms for at least 18 months. ive had ME/CFS for 13 years though and it is hard to tell which is the ME and which is pots. My illness didnt start with a virus, which is unusual for ME. The symptoms came on gradually but i had been through several big emptional traumas for the 2 years before. Im sure now that i had post traumatic stress as we were burgaled whilst i was in the house and i was never the same after that. Pots and ME have alot of symptoms in common and it seems a similar onset. I wonder how much they catually cross over? many people with ME probably have pots and some people with pots probably ahve ME and dont know it?

Hi, Could someone with mcad please help me. Ive only just heard of it and im struggling to find much info on the internet. Theres a few things that make me wonder if i maight have it. could you please explain it to me and the symptoms. Thank you so much

Thank you all so much for your replies. sallysblooms. ive just been diagnosed with pots but started to suspect it about 18 months ago but ive probably had it longer than that. Cath_uk, Im not sure if doing something to raise bp would help. im usually feeling so bad that i cant do anything anyway. caffeine tends to give me tachy. It was happeneing a few times a week about 18 months ago and i was tested for addisons but it was negative. Then it was happening less but now its more frequent and severe aain. Im sevrely affected with M.E/cfs so i feel so ill all the time and am in bed mostly, so its hard for me to tell if something is more serious or whether to make a fuss. I just tend to lump it all together. It is very scary though. My gp is useless and im not seeing my pots doc until september.

Thank you all so much for your replies. Naomi, yes i have the weird head feelings all the time. in different variations and severity but it has never gone away in 12 years. It is much worse than it used to be, im guessing from the pots as well as cfs. kluesyk, i live in england. Ivabradine is licensed as an angina drug here and my doctor can prescribe it for pots too.

Hi, last friday and yesterday i had 2 horrible episodes/crashes, whatever they are called!On friday I woke very feeling, heavy head and painful eyes. It seemed to ease at about 2pm and I went to sit in the garden. I then felt very dizzy and completely spaced out. I came inside and laid down. My arms and legs were very weak and heavy, I felt very slow, my eyes were so heavy and I couldnt think straight. I went to sleep and when I woke up I felt a bit better but very drugged and my eyes hurt so mch all night and struggled to stay awakw. I was also shivery later and when this feeling happens I always need to pee loads! Then yesterday, I felt terrible when I woke. I'd had a hospital appt the day before so I expected to feel worse but this was extreme fatigue, heaviness and pain in my head. I got up for some food and went straight back to bed to sleep. When I woke up at about 5:30pm I felt even worse. I was so dizzy I felt like I was drowning in my head, I felt floaty and I couldnt keep my eyes open at all. I wasn't asleep but I wasnt awake either. Everything seemed to slow down and I kept thinking I would move or open my eyes but I couldn't and time just passed. My husband came home from work and into our room and I couldn't turn round, open my eyes or talk. Eventually I manged to turn to face him and he hugged me but I couldn't speak or open my eyes. My brain was saying to talk but I couldnt. After about 1 and a half hours, I began to be able to open my eyes but not for long and I began talking but very slow and slurred. I came round slowly but still had a drugged feeling and a headache the rest of the evening. Does anyone else have this? What is it? I took my bp and it was 88/49. Is that low enough to cause these symptoms? Ive been looking a bit into mcad. Does this fit that? thanks so much

Hi, i had a tilt test and autonomic function tests last week and saw the doctor for the results on tuesday. I do have pots!(i have m.e/cfs too). He said on the tilt, my hr went straight up tp 135 and later on was 170. I forgot to ask what my bp was. after 5 mins of the tilt i started shaking and it just got worse until i was having violent all over tremors. Ive had this quite alot before from different things, talking or too much noise. I asked why it happened and they didnt know. Does anyone know why? The doc said the autonomic function tests pointed towards pots but didnt explain any further. i always forget to ask at the time! During the function tests one doctor said, look she has hives on her neck, does this normally happen? To which the nurse said no. Has anyone else had this? Any way ive been put on ivabradine. I also have to have a 24 hour hr and bp monitor. The doc asked my symptoms(i hadnt seen this doc before) and i was explaining the awful feelings i get in my head. Im constantly dizzy, drunk feeling, spaced out, feel like im putting and have an awful pressure feeling in my head. he got me to stand up and close my eyes and he had to keep catching me as i was swaying forwards and backwards loads. I know this happens always when i stand, even with my eyes open. he also got me to walk along a straight line and i couldnt do it, i looked drunk. Does anyone have this and do you know why? Thanks.

Hi Lynne, my chest pain is really intense. i suppose its like a really strong muscle spasm. It often happens in bed at night. It wakes me up and i cant move whilst ot lasts and if my husband wasnt laying next to me i would probably screem!

thank you everyone for your replies. Rach, i have been on that site before. It is the best and most detailed one ive found too. Thanks for sharing. Will let you all know how i get on. waiting for hospital appointment to come through.

Hi Jared, tahnks so much for your reply. Its great to have support. M.E is the english name for chronic fatigue syndrome. Ive had it since i was 17. I am severely affected, in bed 18-20 hours a day and on the sofa the rest.I can only stand for a few minutes before the symptoms are unbearable. I have symptoms continually, at rest as well. with my breathing, i feel like my chest is tight and my tummy feels tight too, almost like i have been winded. Im not anxious, i can be totally calm but it feels like i cant get enought breath. Also have crazy feelings of adrenaline and shake even after something as simple as a conversation. thanks again. God bless you,

Hi, i had bad chest pain on monday night and when i woke up i took my hr and it was 52. This is low for me, its normally around 68-75 at rest. Is this hr low and does this happen with pots and can it cause chest pain? I had palpitations all the next day and it stopped me sleeping the next night. Can this happen even when you are not having tachycardia? Thanks

Hi all. I'm Lindsay. I'm 29 and live in leicester, England with my husband. I've had m.e/cfs for 12 years. Im severely affected and mostly housebound. Mu condition grew worse over the last 3 years. I heard about pots about 18 months ago and thought that it sounded like me but didnt pursue it as its hard for me to go to the docttors and im used to not being taken seriously. i started meauring my hr on a regular basis and noticed a significant increse from laying to standing. I looked on the internet and found a private consultant with knowledge of pots nearby and i saw him a week ago. He took a full history and ruled out depression(which was good, normally doctors try to convince me im depressed) and then did alot of tests in his office. He did my hr and blood prssure laying, sitting and standing. Hr laying was 72, sitting 105 and 30 secs standing 156. he concluded that i do have pots with orthostatic intolerance and my bp dropped by 30 and is seeing me at the local hospital for ttt and full autonomic testing. He said he will do a short ttt as he thinks i will faint after 10 mins. He was really good to be taken seriously after years of being looked at like an idiot and for something to show on a test. i assumed that i have pots as part of m.e but he sid sometimes m.e has an autonomic cause. What do you think? He also said that with pots you dont have symptoms at rest only on staanding. From what ive read that isnt true and its definately not my experience? He is waiting till after the ttt to start medication and when i asked what i could do till then, he said add salt to food but how much do i need? And where do i get compression stockings from? oh and he said something about big knickers?! Hes also checking me for vit d deficiency and found some benign postural vertigo. He said i ight have hyperventilation sndrome, whats is that? Sorry this is long, so many questions! Looking forward to chatting with you all