AussieOI

I stop my periods and its fantastic. I have low blood pressure though so being on the pill actually helps plus I have always had terrible period pain so for me it's a great option. I have never noticed any particular side effects. I realise it's not for everyone. Like anything though, everyone responds differently so what is great for some could be not so great for others.

It certainly saved me last year. Even just one day a week helped massively. Rama can you ask to work from home or is it just not viable?

Very witty and well written !

That's really bad although I'm sure people might have teased me about that if I had used it but more in a silly way. Some people are pretty clueless

I think someone once said you can count the number of real friends you have on one hand or two hands (can't remember). I agree with Angela that 4 real friends is more than OK! I think a support group or taking up some sort of hobby could be a good way to meet friends. Some of my friends have been great and often it is the ones who have had a few health issues themselves as they can relate to it. Meeting some people who are going through something similiar could be a good place to start. Some people on this site also mentioned a few facebook POTS pages/groups. I have looked on these and there seem to be quite a few people in their 20's on these sites and I notice from your profile that you are also young, so perhaps joining some of these sites could be good?

Classic - yes you can come and work and we can be POTS pals !! The IT guys even offered to put a couch in the computer room so I could lie down there so my workplace is now POTSified !

Hi Racer, I work full-time however it is in an office doing a desk job! Last year when my POTS was very bad I found it incredibly difficult to work-full time. I basically got a lot of taxis to and from work and once at work had to stay pretty much at my desk all day except for bathroom breaks. There was a point when I thought if this is going to go on as bad as this I need to ask about having a few months with leave without pay. I had already had two months off as well due to a liver/GB issue so it was hard. I had even thought of resigning on my worst days. I had to cancel a business trip to HK last year as I was too ill to go. In Australia my company offers income protection so if you are too sick to work you can get 70% of your pay for as long as you are out of work. I am not sure how the whole insurance thing works in the US - it sounds quite tough there. I am much improved so working full time is OK currently. Last year I did find it hard to get to work at 9am as I felt so off in the morning. My company is good and quite flexible so they said I could work from home or come in late each day. I would say just explain things to your boss - if he doesnt get it then what can you do? I am not advocating it but maybe some downtime would help? Could your parents help support you? What is your line of work?

Aimes I have heard that during pregnancy blood volume can increase and people often feel better - although not sure about afterwards! I am also going to try and stop worrying. I worry a lot as well eg each morning I get up and I might be feeling fine but then I start thinking 'How will I feel today' , 'Will I be OK', 'Do I have any symptoms etc I do think that this level of worry does have an impact on things. It is difficult not to worry but I think for me I am going to really try and calm down a bit !! Hilbilirl - good goals !

That's great Racer that Midodrine is helping you.

Hello Guys I wondered if anyone could explain something to me. Why is it that there is a lot of studies and literature on POTS but not much on NMH? I was told I have NMH as my blood pressure goes down quite a bit on standing and that I also have POTS as well as my heart rate goes up. Is it that most people have POTS, do not experience NMH (ie a lowering of blood pressure)? Does POTS account for most cases of OI and NMH is only experienced by a small portion of people? Aussie

Racer also what is your dosage? It is 2.5, 5 or 10mg 3 times a day? I have started on it in the last week (5mg) and I think it will be helpful for me. I do feel better on it but as you say it is short lasting. I have only been taking it on bad days so far. I get the scalp tingling but that is a common side effect and I dont mind it as I know that it is working !

YolainBlue - I would be interested to know what tests the doctors run to determine the cause of your POTS. In Australia it seems that we are not as advanced as the US and so far my cardio feels that there isnt a lot of point in determining the cause of my POTS/NMH. I would actually like to know whether there is any underlying condition causing it. I tend to suspect not however any feedback you have would be great!

yes I think a dr kyprianou has had some sucess with treating POTS patients in dallas

Yes I saw that one thing I think is that when it goes away still try and take care of your body - that's what I havent done both times I was better - I continued not excercising and eating a lot of junk food. I know better now!

Biz thats what I am thinking. I actually do think that it will go away at some point. It could return but I suppose its just trying to make it stay away

How did you manage to have a 2 year remission bizbiz? Did you do anything health wise to achieve it or did it just happen?

I had never taken any meds till I got POTS badly last year for 4 months. So the first time it went for nearly a year I was never on any meds. Last year was on Florined for a month and that have me a headache so I wnt off it. Then neurologist said that POTS is something you just have to put up with so I accepted it. Then it again just seemed to go away. Then I had a period abt 5 weeks ago (I put my periods off) and it has come on again and in the last 5 weeks I thought I better try and investigate this issue further becuase it has now come back a third time. Now I am midodrine which I think might be good but not sure yet as have only been trialling it for a week.

Hi Lynnie - I have only had this condition for about 2 years. My symptoms do seem to come and go. A couple of years ago I was ill for 6 weeks with POTS like symptoms. I assume it was the onset of POTS but I really have no idea. Was OK for a year, got sick last year due to an unrelated condition, POTS came on for 4 months, disappeared for 3 and has now been back for 1 month. There seems to be no rhyme or reason to the whole thing. A few times in my life I have felt faint when I was in extreme heat so maybe I has some suspectability to it however I would definitely say I did not have POTS until say 2 years ago.

That is a tough situation as you are having to gauge how excercise someone else ie your son should do and I am sure you want to get the balance just right. I would get advice from the doctors & the physical therapist. Maybe he could do really simple stuff like stretching excercises, leg raises etc lying on the floor etc Cardio could be too much but maybe some gentle type stuff could be helpful. Swimming is another excercise that is good. I am not suggesting he do loads of laps but even playing in the water is quite relaxing and he can do some stretching there - I suppose though it depends on the weather in your area - this might be a summer activity when he is a bit stronger. It's really good that you are on this forum and seeking answers/advice looneymom - I hope your son sees some improvement soon.

These are all really good goals guys! My main goal is to try to get to a point where I am largely asympomatic from day to day and can walk comfortably for an hour. What I am currently doing is keeping a diary of my symptoms on a daily (not in an obsessive way) but trying to identify if there are any patterns betwen what I eat, how I sleep, what excercise I do, what supplements I take. I must say I am yet to identify any patterns! That's what can be so bizarre about this business in that in my experience you can be fine for months, then the symptoms come back for months, from day to day I can feel very different and even within a day I can feel normal for hours then suddenly quite lightheaded and strange and feel like I really need to lie down. I can identify some obvious triggers such as hot weather but often there doesnt seem to be any logical explanation.

Thnaks guys - I am going to look at breathing excercises. I googled and found something called cardiac coherence a type of breathing excercise. Also wil check out Dr Weils book. I think all this stuff could have a place and could be very helpful - I am just starting to explore it all. I am quite a positive person so I am coping OK with it all but I do get frustrated at times not being able to do basic stuff like going clothes shopping for ages or going for a long walk. I just tend to this at this point in my life 'it is what it is' so I am concentrating on trying to understand what helps me meds wise, diet wise and excercise wise.

It's strange how it gives so many people headaches. I will have to google that one and find out why!

Hi Guys I would be interested to know if people have set any goals for themselves this year. It could be anything from excercise more, change diet, be able to walk a certian distance or participate in an activity, work etc And what are people doing to achieve these goals? Aussie

Do people think that employing techniques such as Positive thinking, meditating, visualising or saying affirmations can in any way help alleviate physical symptoms or improve recovery overall? What about self help books? Other than Positive thinking I have not really tried any of these methods. I have never really had to but now I have this physical issue (NMH) I am wondering if some of this stuff might help?

Thanks Rama - I bought one to try that has 425mg per capsule - you have one that's stronger or weaker?