starby

Yoga was what triggered my pots and put me in hospital. I was only doing light stretches. My advice would be to trust your body and don't do it if you are severely exercise intolerant like I am. Peeps with pots and M.E/CFS are often told yoga is good but in my case it wasn't.

Does anyone else experience an ongoing cough that is related to catarrah? Sorry for gross topic. I've been worse for some time and even talking brings on a cough. It's not viral but related to a recent worsening of all symptoms. I'm hoping it won't last much longer as the heart symptoms are more under control now.

Thanks for the suggestions everyone.

The pill made me dreadfully ill. Won't touch any hormonal stuff now.

I am very breathless today. Does anything apart from rest help with this? I don't want to take more beta blockers. I'm so short of breath it's scary Should I see doctor if it doesn't get better or just rest?

Sounds very familiar to me. I have ME/CFS which is still largely misunderstood, but there's often overlap between this and pots. Are you in UK or US? Has it been suggested that you may have pots or even MS/CFS? You may know it as CFIDS? All your symptoms can be attrubted to malfunction of the autonomic nervous system.

Yes I do. I have ME/CFS and its all part of the delightful package of malfunctioning system. Sorry you get it too.

Hello, my pots started as a secondary to ME/CFS so it's hard to separate them, but basically I developed pots in April 2010 after trying to do some yoga (big mistake). Ended up im ambulance with heart rate 190 bpm. Since then I've had bad days and horrible days. The pots definitely varies a lot as I don't need my beta blockers some days, but when I've exerted myself physcially I get very ill and need them more. My pots is very much linked to my other problems - immune and nervous system malfunction - so when my system is weak my pots will flare up and I get tachycardia every morning or on any sort of movement. I am unable to manage stairs to the point of looking for a flat to rent (am in house currently).

Thanks everyone for the replies. I'm sorry I can't address each of you, but I'm glad to know I'm not alone! I get the nausea plus shortness of breath too The idea of whispering when it gets too much is a good one, plus lying down and not trying to talk when I've eaten a big meal. I will give the ice pack idea a go too. I felt really alone with this so it does help to know I'm not, even if there's not much that can be done about the problem.

Best of luck. I can't stand up in church either- even sitting for any length of time is a challenge at my worst.

Hmm I voted average but then I see some of the posts and perhaps I'm lower than average after all. Mine is usually around 95/60 but can go to 120/70 at highest and to 80/45 lowest. So I suppose in relation to everyone else I'm probably lower than average, but only just. I find mine is a bit higher when my tachycardia is bad, funnily enough. I thought it was normally the other way around.

Definitely get this checked out. If your doc won't listen, see someone else. I can't imagine any doc could ignore a problem like this even if s/he dismisses your other difficulties. Bleeding needs to be taken seriously. Good luck.

Thanks for replying Tablet. I'm so glad someone understands! I too only get this when I'm very bad but unfortunately it seems to be occuring more often lately. Like you I have to cut back on talking during those times and only allow one intense conversation every so often. I experience a sort of weak and tight feeling in my chest and stomach when I'm struggling and this sometimes causes my heart to race. It's really unpleasant, like being held in a vice. P.S. The feeling often causes me to cough too - does anyone else get this? I know I need to stop talking when I have the urge to cough.

I sympathise. While I can't say what you're experiencing, I'm well aware of the very subtle differennce in myself between an anxiety attack and an addrenaline surge. The difficulty is the my doctor really doesn't have a clue and puts it all down to anxiety (I'm currently awaiting a diagnosis of pots from specialist). It is so hard to put this across because the symptoms are incredibly similar. My main difference is that with pots my heart rate usually (not always) calms on lying down and/or when all movement has ceased. With anxiety, it doesn't matter. Also, with anxiety there are usually triggering thoughts or emotions (such as grief or anger) beforehand. Adrennaline surges often occur when I'm particularly struggling, when I'm in a car, when there's a lot of movement around me or on waking up in the morning. It's hard but there is a difference. I hope you find some answers to what you're experiencing.

Does anyone else have problems talking due to muscle fatigue? When I'm paticularly bad I feel my chest and stomach muscles contract and this causes great difficulty talking to people. I'm usually ok with short conversations but really struggle with long intense ones. Sometimes it sets my heart off as well. I also have a diagnosis of CFS so not sure if the talking problems relate to this, the POTS, both or neither. If anyone does have this problem is there anything you've found helpful to deal with it? I'm guessing pacing is the main one - avoiding long conversations too often. This is so limitating socially though.

My heart rate is much worse in the morning. It can take a good two hours to calm down from well over 100 bpm. Usually in the evening I have few or no problems.

Does anyone else vomit with pots? Sometimes when I have a flare up of both tachycardia and stomach problems (mainly dirrhea) I sometimes vomit, especially after larger meals. I get a lot of stomach bubbling and gurgling too, rather like a witches couldron Is there anything that can help with this? I find it really hard to live with.

I get this horrid feeling as part of my ME/CFS. It's a sense of all muscles giving up and going dead and along with that I feel dreadfully ill like I've come down with the flu. I feel weak and can't move. I also sometimes experience a sort of unreal feeling when I've pushed it, like fainting but more intense and without loss of consciousness.

Thanks so much for the thoughts and experiences everyone! Sorry for late reply but my pots has got bad again and I'm also getting joint pain in my hands making it hard for me to type. Dionne that is a lovely description of what happened and thank you for sharing it. It helps to hear how others feel and what happened with them. I still think perhaps it's not something to mention on date one, but if I needed to take my crutches with me I would at least say I had muscle problems and leave it at that. It is very hard though.

The times I've attemped this have been during meditation exercises where we;re told to take a few deep breaths...but when I do I end up breathless and my pulse rate through the roof I thought I was just out of practice but now it makes sense.

I'm much worse when I'm due on but haven't noticed if I am when ovulating. I get an increase in heart rate, stomach problems and all sorts of chest and breathing difficulties at my time of the month.

I've always had difficulty breathing deeply for any period of time. It makes me breathless and my heart starts to race and my chest feels tight. Sometimes I feel faint and need to lie still for a time afterwards. I've always been told that its' because I'm not used to it and it'll get easier with practice, but it never does. Then I read that the autonomic function tests may include asking you to breathe deeply. Is this because people with pots have problem with this? I'm wondering as it might explain mine.

Thanks dsdmom, yes I heard there are no cures sadly, but at least if I can find a consultant who takes the pots seriously and can advise me that will only be good. At the moment I'm very worried about taking beta blockers and also about my diet as I can't tolerate a lot of solid food. Yes exercise definitely makes me worse The hospital kept advising me to resume usual activity and not to rest excessively but it was exercise that put me there in the first place! The study sounds promising, I can't wait for ME/CFS to be taken more seriously. It's a horrible illness to have and many people just don't realise how ill we feel everyday.

I get this too! I thought I was going mad. Does anyone else experience a lot of gas after drinking still mineral water as well?

During remissions is it common for the heart rate to be quite normal even without meds? If this is the case, persumably if someone was to go for the table tilt test during a remission they could be told they don't have pots, but then relapse after a small amount of exertion the next day and have all the classic symptoms? I'm trying to be referred but worried I might get an appointment on a day when my heart isn't playing up, and then what? My heart can go to 180 bpm on some days but others it is totally normal