E246

Fludrocorisone made me feel utterly depressed within 24 hours and had this effect when i got the a new persciption but it passed. It was the flodro that actually stopped all the anxiety symptoms. Did she try it for long - the depression passed for me. I always carry valium and if the adrenaline gets too high i take 1/2 tablet. But it would be no good if you took it all the time. My heart goes out to your daughter - it was awful to feel like this all the time. Hope this helps.

Kimbellgirl, I think jangle is on Losartan as well and seems to have got much better with that and exercise. As you are on it i assume you have done research - so what are the long term implications of Losartan. I know when something makes you well it does not matter so much but I am taking Fludrocortisone and wonder whether i would be better on Losartan. I had such an immediate response to the fludro that i have to assume that i have an over production of Angio II and low renin/aldersterone. So Losartan might be a good drug. Not sure if they prescribe it in UK. Glad it makes you well.

I've had chest pain all day with a slow hr. At the moment sitting it is 53 but it will increase if i move around. Standing it's at72 which is so odd after months of tachy. I will also bring this up with Cardio at app in 2 weeks.

Hi Anna, If it helps I have increasing problems with discomfort from low HR. I no longer get very tachy apart from exertion - so things like stairs i take slowly ( it can trigger an svt). Walking or being upright for a long period causes a slow hr in the lows 50,s. Sometimes it drops briefly to 35ish. Today I had a great day and walked further than i have been able in 18mnths and my heart rate never really went over 100 but afterwards I started to feel not so good and my HR kept dropping down into the low 50's.It was very uncomfortable. Sometimes during the day I feel a bit ill and assume my HR has risen but infact it as actually dropped. BB are out for this reason too.

I had a Merina coil - which is impregnated with progesterone and within 10 days i was in a wheelchair and clearly my pots started there although it took 7 years for a diagnosis. Will make a post about this as was wondering if anyone else with pots has had a Marina. So definitely progesterone not generally good with pots.

I resisted antibiotics last year but gave in after two weeks of a sore throat. Definitely felt the pots got better over the course of amoxycillum. I only ever get colds etc once a year so that doesn't indicate a weak immune system but the antibiotics definitely helped me feel better.

Issie - well said. Everyone is different. I think we may be the only two people on this site who do not want to salt load. Anna did write something recently about having high bp and that she kept her salt down until she had to cook salty food for her children and would eat it as well and in fact her bp came down. So one does have to keep an open mind and try different things. I take a small amount of florinef as more than 1/3 of a tablet takes my blood pressure too high, so i have been told not to increase salt and I don't want to anyway. Two docs have said not to increase salt and one of these mentioned the study and that it showed it was unnecessary but I didn't get the detail. i will ask next time. I also don't get dizzy or light headed - it is more chest pain so I try and look after my heart because as yet no one has explained it to me and i have no doubt the repeated surges and high bp are not good for the heart. I am really sorry about your friend and it is really important we make informed descisions. So thank you for telling us about it.

Thanks for that Issie. I agree about not salt loading if br is high. It is sometimes a fine line between keeping bp and hr in balance and i agree i do not want to damage my heart or vascular system. The whole medical department here quotes a study that disputed the use of extra salt and so i have been advised against any increase and I feel happy with that. I wish i was not on Florinef but the adrenaline surges were probably very damaging as bp during these episodes was unreadable and very high even when calm enough to take a reading.

Yes it unsettles the way you feel. I wear a monitor and I have had docs say i am just worrying myself but actually i find it reassuring as often i feel more ill than the hr would suggest. When i feel well i never look at it. Just been referred back to a cardio so will see how long this will take - the randomness of the symptoms makes them hard to catch and so convince the doctor about what is happening. Also when i am well i just want to forget about it and don't have the conviction to persuade anyone as i always really believe it has gone and i am better now. This is why 12 months on i am still having very definite svt's with no proper treatment.

I was advised not to salt load - but do drink lots of water. If i drink too much i sometimes feel worse and waterlogged. Like issie bp too high to think it is a good idea. Felt a bit better recently and even on the florinef bp has come down so as the body recovers ...

I could'nt answer as I haven't got better yet and so haven't relapsed. Into 18 months of fairly consistent symptoms so hoping i will be lucky and get gradually better.

Yes the heart rate alertness probably seems mad to some but my life feels so minute by minute. And no one would understand it is not an obsession but a reaction to constant pain and feeling ill. When I feel well I don't think about it. But had chest pain all day again. Do you get chest pain with the ist?

Thanks for the responses. Emma - the tunnel was fine really - I just stayed calm and on the return journey I put on hose and it made a difference. Corina - I think i was just really unlucky on the one flight i took since having full blown pots - i had such a bad reaction and such high hr's had never happened before so i think i also felt really frightened but of course now i would have to face this fear - which i will do - but need get the pots a bit more settled. I suppose i still think it could kill me as no-one has quite explained what my chest pain is or sorted out my svt's which bring awful chest pain for hours. So i don't feel secure with good information yet. Which is all a real shame as i used to fly at least 6 times a year ( Englans so cold) and looking back some of those flight were a bit difficult - just didn't know why.

Yes I have seen an endocrinologist twice but both times during the journey before the pots diagnosis. I am awaiting seeing a sleep doc but apparently i haven't been booked for a test despite the pots doc requesting it. There's a lot of cuts going on with the nhs and everyone seems to be doing minimal testing. What are you thinking Rich?

Hi Tinks, I had autonomic tests last september at the unit and then a consultation with P Mathias last october. Like you the staff were confused and I know to always ask to see the doc you want to at the beginning and it was a good job I did as they thought I was a repeat appointment and had me down to see someone else. When i went in my test results were not in the file and therefore he could not say much. Subsequently I was put on the inpatient list (11 months) but was so ill before xmas gp wrote and should have been bumped up to the urgent list. I am travelling from Newcastle so it was a lot of travelling which I can't do on my own and I still have no results. In Newcastle I am caught between cardio and syncopy depts. I keep being passed backwards and forwards and still I have svt's that trigger either the pots or a cardio problem and no one knows which. Keep me posted and likewise I will let you know what happens.

Hi, Been on a waiting list for inpatient appointment with Prof Mathias in London. At the original consultation (which was a second opinion) my notes were missing however he said I need a head scan and he would arrange cardio's during inpatient stay. Then I became really ill before Xmas and GP wrote and they put me on urgent waiting list. I got a phone call confirming I would be admitted for medication adjustment and symptom control but no mention of head scan. So GP wrote again requesting this. I phone last week and I am neither on the urgent list nor having a head scan, so have had to forward all correspondence and am awaiting word from Prof M. SOOO fed up with the medical profession. Is this appointment worth waiting for?

I went on Eurostar as the last flight I had was awful with tachycardia and adrenaline surges. My husband refuses to fly again until we have a solution to this or a way of dealing with it and despite talking to a numer of doctors have still had no remedy. So we took Eurostar to Paris and I checked with the technical department about the pressurisation which they said as different to air travel. We left St Pancras and within 5-10 mins clearly the train had pressurised and my hr climbed until it hit 155. I coped really well, there was no panic , quickly lay down , put on tights (i didn't have them on as i was not anticipating a problem and don't normally wear them ) and things were a bit erratic but settled and I recovered So I seem to be someone who suffers from pressure changes and would love to know if anyone has found any solutions. I have to get to Portugal in the summer for business and then would take a good holiday. It takes 3 hours to fly from the airport 10 mins away or 2 days to travel by train and i know I cannot fly until I know how to control the symptoms. I am now on Florineff which has mostly controlled the surges but still too nervous to fly. I could try a short flight and see how I am prior to this. Or see a cardio privately but here in Newcastle some Cardio's haven't even heard of POTs so trying to find someone who knows about both hr and pots. I know I have text about this before but the nhs seems to grind to a halt under the pressure of finding some answers. Any comments really appreciated.

Thanks -everyone -well it seemed fairly obvious to me too that my sugar was too low. And that this is probably to do with POTs. I bought a sugar test monitor at the chemists and will use that next time. GP actually said if i can go without eating and turn up at the surgery at 9.00am he will do a blood test anyday - which is good - but then said he would be testing me for something really rare? It does just seem that my blood sugar drops too quickly. I eat a really good diet -all fish, chicken, veg all organic / wild. have been on dairy free and gluten free but not sure if it made much difference. Still i am careful with these. Thanks for all the advise - I find sanity on this site.

Yes i almost think they triggered pots full time 18 months ago but were very intermittent. They are only maybe once or twice a week but they wipe me out with chest pain for hours. Carrie - thanks - it does help - the thing is beta blocker drop my hr down to 50 and lower. I had one yesterday and then one today - really upset me as it has put me out of action again. It's the pain afterwards that is the problem and I remember Rizzy saying this was not normal so am just checking if anyone else gets this.

I get SVT's - that is if they are - a sudden jump in hr to between 140-210, which sticks at that beat for 10 secs - 3 minutes then drops suddenly back to near normal. Don't seemed to have these properly diagnosed - I just seem to get passed around - but that's another story - but sure that is what they are. Anyway - does anyone who has SVT's have chest pain/ pressure that last for up to 8 hours afterwards as well as breathlessness, burping and just feeling not well / potsie. It happened today after twisting suddenly but normally after exertion and it wipes me out for the day. Is it dangerous to keep having them? Thanks

When i first wake the nausea isn't too bad but just gets worse until I eat - the last thing I want to do in the middle of the night. But it clearly solves the problem - and I can't go to sleep until I have had at least toast and a banana - a biscuit won't do. Spoke to both GP and POTs Prof about it and they just looked baffled. It's waking me a few times a week and I am sure it's to do with low blood sugar but this is a new area for me. It happens a bit in the day too and the pots feelings come on if I don't eat every few hours. I don't actually feel hungry but know i feel better as soon as I start eating. I am normal weight. Anyone throw any light on this. Thanks

Hi, Glad you have found the site. Like you I discovered i had pots 5 minutes after arriving home from hospital - i was discharged after being told i had to accept it was psychological. I am in the north of England and although my GP had not heard of POTS the local hospital had experience so i got the diagnosis. However they obviously do not deal with as many people as London and some of their understanding of the condition seemed limited and so i am awaiting an appointment in London with Prof Mathais for symptom management and medication. (as a second opinion) I suppose it depends how debilitating it is for you. At first i was prepared to wait and see and i initially got a bit better but then became worse. The break through for me was getting Fludrocortisone after i had been ill for a year - why it took so long i don't know but you do need a doctor who can start to go through different medications to find what works. Best of luck. You can pm me if you want any more uk type info.

There's a technique called tilt training that I was told to do -apparently thats all they do in Belgium. You stand with your back to the wall, feet about 6'' to 12'' away, body straight and shoulders leaning against the wall. I was told to do this a few times a day and record how long and increase each day if possible. Might help with you if you have a problem standing.

I get vibrating - it feels like it might be my heart but it's not. it only happens in bed and not so much now.

Wow - I thought it was just me. Sorry you went through this Lemons but it's amazing how we help each other by sharing experiences. I did not realise that florinef had that effect on others. I was having 8 hour adrenaline rushes every other day until I took it and it stopped instantly. Why? Why does this have that effect on suppressing adrenaline or missing a dose bringing it on. I thought it just kept more water in the body. Why does it affect the adrenal system even if you drink lots of water?