AussieOI

I first had some POTS symptoms a few years ago for abt 6 weeks then they went away. I was sick last year with a GallBladder Bile duct/liver issue and the POTS came back at which point I was diagnosed with POTS abt 6 months ago. Again the issue seemed to disappear for months and has now returned a month or so ago. I am now coming to the daunting realisation that yes I have an issue and it could be there off and on for many years. I would be interested to know the following: 1) When people were first diagnosed were they angry/sad and did they go through some type of grief mourning for their old life? 2) Perhaps people just see this as a temporarly blip that will go away on month or years? 3) How do you keep some perspective on things without becoming obsessed about your problem ie I can imagine that it would be easy to always think about POTS and worry about it. I find at the moment I just concentrate on one day at a time and getting through it. I am someone who loves exploring, travelling etc and it does rather concern me that my old life might be gone for good or for at least sometime.

What if you have a terrible voice? :-)

Hi All, Has anyone tried alternative therapies or positive thinking like affirmations, visualisations or cbt to help with POTS? I don't know much about this stuff and have never treally tried any of it however I see that it does have its place and maybe could do for POTS/OI but not sure how exactly? Aussie

No I haven't however I have had times when I nearly have. My form of OI is Neurally mediated Hypotension so I get a big drop in bp and a big increase in heart rate which can lead to near fainting episodes. I always wriggle my toes, and flex my legs to get the blood moving back up my legs to prevent it.

Today I went to a BBQ and it was quite a warm day 35 Celsius or 95F. I was sitting chatting and feeling so boiling and I then I started feeling a bit light-headed. What do people do to cool down and also what counter- maneuver's do people employ to ward off a possible faint? I was crossing my legs and wriggling my toes under the table today! I just can't handle being outside for long when it's hot.

Hi Racer, I have told my family and a few close friends who have been great. My POTS came on after a GallBladder Operation that resulted in gallstones blocking my bile duct and then I got hepatitis and was bedridden for about 2 months. All my friends knew I was sick and were great about it so when the POTS stuff came on I just thought I couldn't go and say I had another illness! I have told my boss and a few co-workers and I just say I have very low blood pressure which I do. I think it's very much up to the individual how much they want to share, however for me I don't really want to talk about it all the time as there are so many other things I would rather discuss. That's why this forum is good because you can talk about it in an environment where people get it. I think in time I will probably tell more people but for now I get a lot of support from the family and friends I have told so I don't really feel the need to tell anyone else at the moment. Aussie

Licorice Root is supposed to raise blood pressure I believe

Thanks guys for your replies - so helpful. I went walking today for 30 minutes which was good and I am going to try and incorporate walking, swimming, recumbent bike, tilt training and stretching into my routine. I think the key is to pace yourself. On bad days I am not going to push myself to walk a lot if I feel bad but perhaps do excercise sitting down. It is a bit scary though when your heart rate soars when just doing basic walking but I suppose you just have to accept that that the way it's going to be. It's also important to try and get your confidence back and to try and take small steps at a time.

Thanks guys for your responses - much appreciated. I will definitely start an excercise program. What target heart rate should I be training at? Does anyone know what Dr Levine's program recommends?

Hi Everyone, I would be keen to hear about what sort of excercise people do, duration etc Has anyone tried Dr Levines program? I am trying to start some sort of excercise program - even basic walking but find I can get quite tired sometimes and my heart races! I do think excercise could be of great benefit and would be interested to hear your thoughts. Aussie

I would be interested to know what High salt foods people eat and if anyone has any good recipes that are high in salt but relatively healthy. I make a pasta sauce with olives, anchovies, capers & tomatoes and I also make a chicken stew with tomatoes, olives, lemon which is quite nice. I also try and drink tomato juice although I dont really like it much. Do people take salt tablets? What Daily Salt intake are people aiming for?

Hi Racer, You are not crazy! I sympathise, and I think many people in the forum have been through times of frustration and wondering when things will improve. I have NMH so when I stand my bp drops and heart rate increases. Where are you located? There is a list of doctors on the website who specialise in POTS/NMH. I am shortly going to start on midodrine and I am hoping that will help. It's great that you found the forum as I am new to it as well. It's so helpful knowing there are people going through a similiar thing. Aussie.

Thanks guys for your replies Here is a link to a site I have found http://www.dizziness-and-balance.com/treatment/rehab/tilt%20training.html 'I hate bananas' - interesting that your doctor quoted the 10-15 minute threshold. I think I will start it tonight and stop standing the minute I feel strange!

I have been reading a bit about Tilt Training and wondered if people have tried it and how sucessful it was? It sounds an interesting idea and seems to make sense trying to 'train' the body to be able to stand again, although I appreciate it is not that simple otherwise everyone would just do it and be cured! I would think you would have to start slowly as you could feel pretty bad if you overdid it.

Thanks Corina and Ramakentesh I ended up going to the cardiologist today who did my tilt table test 6 months ago and he was fantastic and explained a lot of things to me. He is going to start me on Midodrine so we will see how that goes.

Hi Everyone, I am a new member from Australia who was diagnosed with Neurally Mediated Hypotension about 6 months ago after a positive Tilt Table tast. I tried Florinef although that didn't help much. I would be interested to know what additional medical tests people have undergone to help identify the cause of their NMH, POTS etc thanks, AussieOI