AussieOI

Rama when you talk of licorice do you mean licorice root as a supplement or the sweet black stuff ?

That is interesting - that's my reading as well 1:80 and specked pattern. Last year when the docs were trying to work out what was wrong with me they did all these follow up blood tests for lupus and other autoimmune diseases but they all came back negative.

I went on Florinef and it just seemed to give me headaches so I went off it. Don't worry about the side effects as with any drug there are hundreds of potential side effects. Fair enough if you want to let you body get back to 'normal' for a bit though. Perhaps when are ready and your doctor says OK then try it. My attitude is to try different drugs - (medical that is!) if they might hep the condition - although I appreciate that might not be everyone's view.

Hi Seattle Rain, The question you raise is interesting and certainly was relevant to me. I developed NMH largely after an issue with my GB/liver last year where I was in bed for abt 2 months. When I got over that I started getting symptoms such as feeling very faint, chest pain, palpitations etc I has seen a cardio about a year earlier and he had done a echo/cardio which was clear. Anyway when I went back to him last year with these issues he did an angiogram on me. This is basically the gold standard in sussing out if there are any blockages in the arteries etc. It was clear. I continued to have these issues and was then given a holter monitor which checks for arrhythmia's etc That was clear. Then I had a TTT and all was revealed. The symptoms of POTS/NMH etc can be similiar to heart related issues etc. My personal opinion is that it is very important to rule out heart related issues. You def need to find a cardio that you are comfortable with. See what they say and if they reckon you need any of these tests then go for it. Was you TTT conclusive last year eg did your bp and/or heart rate change in an abnormal way? Aussie

If it is during the week and I am feeling awful I will work from home. Sometimes if I am not keen on the thought of catching public transport I will get a cab home from work (I live close to the city so it doesnt cost much) If it is on a weekend then I just lie on the couch (maybe watch TV) and put the air-con up (it is summer here currently). I don't push myself to excercise if I am feeling gross. There have been times when I have had to cancel social events due to feeling ligheaded.

Boymommy3 I am new to the forum as well and I am the same. I have been posting and asking loads of questions. I think it's a great place to ask questions and I don't see anything wrong with posting and seeking answers.

Tammy, Jacob Teitelbaum who is a world renown expert in CFS highly recommends D-Ribose. He seems to think the Corvalen brand is good. He has a book called Fatigued to Fantastic which talks about it extensively. The book also discusses Co-Q10 and L-Carnitine. It could be worth a shot if you are feeling fatigued as most books on the subject seem to rate these three supplements. Aussie

I had some of them when I was in my late 20's. I actually did sclerotherapy which worked 100%. It is a bit painful and not super cheap but it really works. There may be more up to date treatments around now.

Rightly or wrongly I tend not to think too much about getting old! My primary concern is how can I improve my quality of life now and in the next few years and I would like to try to get to a point when I am largely asymptomatic from day to day. I think it is an interesting topic though.

Yes I have NMH primarily and have read that most patients are significantly better within 2-5 years. Who knows if it's true!

Thanks for posting that article - it was very interesting. I am not really clear on how he improved so dramatically however it's good that he did !

I have googled and looked in this forum and there doesn't seem to be much information on how Greg Page from the Wiggles recovered from POTS. It would be good to know how he did it ! Does anyone know?

lightheadedness

I am going to try coconut water - thanks for the suggestion and thanks to all who answered - some very helpful suggestions

How much salt are people aiming to have each day? I have seen anything from 2300mg - 10,000mg recommended

Hi Kelly, My symptoms came on for no reason for abt 6 weeks (2 years ago) then went away for about 8 months. They later returned las year year after I was sick with a liver/GB issue. Last year for abt 4 months I had my symptoms all day - symptoms are the same each time feeling very faint and very low bp. The symptoms then disappeared for 3 months then have come back for abt 4 weeks this time. Now I have an hr or so each day when I feel a bit odd (usually in the morning or if I am walking around in the heat). For me the symptoms come and go and one day I can be fine and the next day I might feel gross all day. Currently I am on no meds however I did try midodrine for the first time yesterday which I think (fingers crossed) might help me. Aussie

Great news Rissy - good on you for sticking to your plan. I think you have the right attitude in that it is very much a matter of managing the symptoms and getting to a point where you can be as asymptomatic as possible. I think for many of us it will mean changing our diets, doing more excercise, getting more sleep. I am not saying that these things 'cure' POTS only that they help!

What do people think is the best type of hydrating drink that is high in sodium and can replenish electrolytes? I know some people like Gatorade however that seems high in sugar to me and not very high in sodium. I have seen something called Pedialyte mentioned however I have never heard of that.

Dizzysilk - are you located in Melb? Interesting Medicare paid for those tests thats great! Did you go to a medical doctor who practices integrative medicine?

Hi Guys I have read a bit about the Dr Levine's excercise regime and how it can prove beneficial for POTS patients, however I can't find any detail of what it prescribes exactly. It seems you have to get it through your doctor. I would like to know how often it recommends excercising, what target heartrate range it recommends and what are the excercises are - is it a mixture of recumbent excercises like calf raises, leg raises and swimming/excercise bike or something else? I appreciate that it may not be suitable for eveyone however I wouldn't mind understanding it's overall principles. Aussie

I have been seeing an acupuncturist for about 4 months. Personally I have found that it has been helpful for me. He gave me some funny tasting herbs to drink and it has not been cheap though. My feeling is that alternative therapists can definitely help however it is probably a mixture of diet, excercise, good sleep, alternative therapies which can all work together to help although they don't 'cure' the problem only make the symptoms more manageable. It is also very much dependant on the therapist you choose how good they are etc.

What heartrate range does Dr Levine recommend?

PS - I thought I better add that you obviously need to check with your doctor about whether you should stop your periods etc I can only say that for me currently it has proven helpful.

I would go for it and stop your periods for awhile if they are affecting your POTS. I had put my period off for 3 months and was feeling fab and then a month ago I had a period and the doctors think it has bought my symptoms on. Periods are a big trigger factor for POTS apparently. The oestrogen in the birth control pill is supposed to expand blood volume which is good for women with POTS. I appreciate you are looking at an IUD as opposed to the pill however I think it's worth stopping your periods for a bit and maybe your other symptoms will lessen somewhat?

This forum is amazing! Since joining a week or so ago I have learnt so much. I never fail to be impressed by the insightful people here who are always willing to help.