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Great Link Claire, there is an article free in the footnotes about the kidneys renin/aldersterone etc. I have been thinking for a while that this is all linked to kidneys. Still no answers but a number of possibilities.

Hi Kim - absolutely love your picture. Going to have to show it to my daughter who is cat mad and breeds them. Anyway - yes thanks for the advise. I often do not know when they will give me a tilt test and there was no way i would stop the florinef for it as it has been a wonder drug for me. When i got the monitor i decided to delay taking a tablet just for one day so that we could record the surges as no-one seems to believe me without the concrete evidence. By 4.00pm i was in new adrenaline storm and started to feel really bad so decided to retake the tablet and of course no one had said only to take them in the morning - they were prescribed over the phone after my complaint - and i was so ill. So the monitor recordings show very little - I was on medication. Just a bit of a rant - am just so frustrated with the intractability of the medical profession. Do they really have so many people who make up their symptoms and are they qualified to make psychological judgements about patients. I felt before christmas that I was left to suffer in the most inhumane way. I was being made to wait like a naughty child who was making too much fuss and they are cross with me because while i was in London and collapsed I tried to get a private appointment with another consultant - I was at the beginning of a 3 week holiday - the first i had had for ages and did not want to go abroad ill - fair enough? Thanks for listening.

I have been told not to salt load even on Florinef. This point has been debated elsewhere - not everyone takes a lot of salt. There seems to be widely differing opinions.

Brilliant - had not thought about lack of moisture and it usually happens when i twist so a loss of contact is quite likely.I found it reassuring when i had surges but have stopped wearing it so much now this has stopped. Thanks for the help.

Had a job getting it too - library had posted out a copy - will let you know what it says then.

Its got a body belt with 2 sensors and a watch to read hr. It is regarded with real suspicion by doctors here so the last thing i wanted was to confirm their suspicions.

How do you get over persuading doctors about your symptoms when pots is so erratic and a test on a good day means no one believes you any more. I had to ring the complaints dept in order to get anyone to see or prescribe for me before Christmas as had become so ill and no one seemed to understand. Then all the tests are negative as they do them after putting me on medication. Had waited ages for a HR monitor to catch the surges that have blighted my life and then was put on Fludrocortisone 4 days before monitor(from a different dept) and so there were no surges to see.Complicated by fact i said my personal hr monitor was showing spikes and their monitor didn't and that is in my notes now plus no surges, so now i just look neurotic. The notes in my file do not mention that the spikes caused no symptoms or that i was on fludrocortisone. Also given 24 hour Urine collection for when I feel surges and again on florinef have not had any - which is brilliant. I have had 2 of these tests before when i was not symptomatic which were negative. It is as if my notes are full of negative tests results and so no one believe me. I am so frustrated with the medical profession. Despite having a definite diagnosis of POTS I was even told that that 5 of my 6 tilt tests were negative - but no mention that i was on medication for all the other tests or1 before i was diagnosed and was not symptomatic at the time. Is controlled POTs still pots? Started to wonder if the pots is due to an kidney/adrenal problem as the florinef had such a dramatic effect on me within an hour. It didn't cure the pots - still found walking far difficult and chest pain but stopped the surges and the dreadful ill feeling. Does anyone else have erratic symptoms and problems getting tested at the right time?

My HR monitor has been showing spikes 185-230 usually when moving but it never lasted long and there was no other symptoms. A hospital monitor worn at the same time did not confirm these spikes. The one narrow complex tachy i had was shown on my monitor as a slow hr. Can the hospital ones be wrong - it was an event recorder with 2 stickers. This is the third monitor i have had = it is a Polar FTI and it has only happened since i got this. I have had 3 of these in a year -anyone recommend something better.

My surges that had started to last for hours have been stopped with florinef. If get a small surge now 5mg valium has really helped. I used this with some relief before the florinef. Some Beta blocker will make breathing problems worse - Propranolol whereas others eg bisopromol don't act on the this. My next move was to take SSRi's. this is the other medication to work on the adrenal release.

I felt a difference on just 0.025mg (quarter Tablet) within an hour of taking it. It has completely changed my life. But am worried about long term effects - anyone on this had any advise about this.

Sorry you are getting these - it is particularly unpleasant. There are quite a few posts about adrenaline rushes - it is one of my worst symptoms and i have posted a few times about it - you are not alone. Don't really have it in bed mine - unlike everyone else it seems come on from lunch time - i am at my best in the morning. If you wake in the night maybe drink a bit more so you are better hydrated when you wake. Hope these pass soon.

Was prescribed 0.1 but have had a few bad reactions so only tried a quarter. next day tried a half and it made me worse so have stuck with this dose. has made me feel a lot better. Have you been told how long you will take it? Are you supposed to take steriods for long? Can't find much very conclusive on web. ).1 is a normal dose but i have a tendency to high hr so was being careful.

There was something I read about a year ago - a whole pots blog by someone who had done a lot of research and he believed that thick blood was a part of the problem. He suggested bromelien tablets from pineapples as they have three active ingredients that thin the blood against one in aspirin.

Both my docs have advised not to increase salt. Said the studies were erroneous.

It is the first medication to help me - within an hour i felt like a different person. But i am worried about the long term effects. I only take 1/4 tablet ie .025 and this seems to be enough and it doesn't seem to have any side effects for me. Istill can't walk far because of the chest pain but i no longer feel ill all the time. Tried to read as much as i can about possible long term effects but info seems a bit cloudy. This should really give the docs a clue as to what my problem is if this cures it so am looking forward to my next appointment in 10 days. Interested in any other info you can find as like you it has made such a difference.

Glad to see you are back. Looks like you are getting things done. Great

I was also low for potassium the first time i collapse. What are the normal for potassium / sodium ? Mine was 4.0 K and 140 sodium last test.

Hi Sue, Do you mean you have diabetes or is this a precursor of this? I have been using almond milk which is really nice and have just read that almonds (and probably other nut) help slow down the ups and downs with insulin. Just thought that might be helpful. I get really ill if i get hungry and often have to get up in the night to eat and know i will not get back to sleep unless i do - i don't actually want to eat in the middle of the night but i feel so sick and empty and this is after eating a good meal in the evening. I am not like this all the time but it often follows a period where i have been more ill and have not been able to eat. The gp has done a fasting test but found nothing but i did not feel symptomatic that time. Really interested if you can tell me any more. Thanks and best wishes.

Glad you got some relief for a few days. I have been on florinef for the first time for 3 weeks now. I had the same experience with that - initially i couldn't believe how much better i felt and i rushed around for the first time in 6 months mostly because the unexplained chest pain got so much better. But the effect has worn off, the chest pain is back and i feel a bit crabby and down on it. Don't know whether to increase the dose or weather i should try and wean off. I was having daily rushes before i started it so still quite nervous of coming of it. Are you taking it only when needed? And do steroids wear off? I have never been on them before.

Ok, I refused a ent appointment as all my tests seem to come back negative. I just live with constant ringing in my left ear that gets worse as the day goes on. Has anyone actually had anything concrete found for this symptom?

I managed to access my notes and sure enough the cardio wrote " 1.Non cardiac chest pain 2. pain unlikely to be due to POTs" This then sits in my notes and next time i see a doctor it gets even more difficult for them to believe that these symptoms are down to pots. Am on Florinef now and this has really helped with the chest pain and the surges. Thanks everyone who reassured me that they had same or similar.

I have only tested positive on one of my 6 standing tilt test - sometimes i was feeling better sometimes i was on meds and once i had tights on. Yet there is no question i have a serious illness and i am sure it is pots and it has been confirmed as such. I don't think doctors understand that it can be intermittent. This has been an ongoing problem for me. I even went to London for tests and on that day was great and the next day could not stand for dizziness and vomiting with tachycardia. Can you keep a record and go back? Or find another doctor?

Goodness this is very interesting but i find it hard to keep up. It takes a while to absorb all the details as i was only diagnosed last year. I have been so ill recently am desperate for some answers. I have been diagnosed for a few years with high creatine levels. Have just started fludrocortone and this has really helped- the first thing that has. As i have hyper pots i assumed this medication would not work as it would increase my bp too much but this has not happened. Also i find my chest pain always feels better after a glass of red wine. It does not make my symptoms worse but will increase my hr if i try and do to much. But it relaxes me. It has sulphides in it - is this related? I am a bit muddled can anyone help? Should i be pursuing the issue of raised creatine? Thanks

Sorry - can't answer your question but was about to post and ask what either actually means to a pots person. Thanks

Does your your bp go up when your hr goes down?