AussieOI

I am on a pill called Levlen ED - not sure if it is an Australian brand name. Periods really bought on my POTS symptoms badly and the pill is great for me as it increases blood volume and can also increase blood pressure which is a good thing for me. It also reduces period pain and makes everything a lot more bearable.

Charlotte, I also have a stationary bike. I have noticed that exercising on it can really help bump up my blood pressure. Swimming is also excellent. The stationary bike is good because if you feel strange (lightheaded) at any time you can stop.

I am actually a fan of acupuncture and I do believe it has helped me with POTS. I developed POTS very badly last year and have managed to improve a lot. I tried many things, acupuncture being one of them. I also drank a funny herbal drink that the acupuncturist gave me (it was a powder ) and I would add warm water to it. My acupuncturist was very positive and he would tell me you are getting better even when I felt physically awful but I found his positivity very helpful. Perhaps it was placebo - I don't know, however going there and having the treatment was certainly one of the things I attribute to my improvement although it is difficult to say whether it helped a little bit or a lot. It was quite expensive though however I would recommend people giving it a try. I think with POTS you just have to try different treatments and different meds and be open to things.

Hi All, I wondered if anyone has any stories of how they have improved with POTS and what they did to achieve this improvement. It could be good to share these stories as it might encourage others? I know I have improved a lot (although not fully recovered) and I would be interested to know other people's stories. Aussie

What made you better Relax? I think I might have asked you this before and you did reply - did you say it was time?

My doctor recommended taking about 2g of salt in the form of tablets at dinner time. Apparently some people can get an upset stomach with salt tablets so it can be good to take them with food. I have not had that problem but take them with food all the same. There seems to be a huge difference of opinion with what is the right amount to take daily - I have seen anything from 2g - 10g

Yes Badhbt - you case is quite interesting the way you didn't have POTS for 10 years then it came back. What prompted it to return?

In between each flare up do people still have some symptoms or are you 100% functional like you dont have POTS?

Also (I know I sound like something out of a self help book!!) but I reckon you have to set goals as well to try and keep moving forward. They can be the smallest thing it doesn't matter. I also bought an exercise bike and started on that. At first I could only ride for 1 minute or so. I was that bad. On my good days I would really try and enjoy them as much as possible and have as much fun as I could. In between those days for sure I had some really awful days when I felt bad physically so on those days I would try and relax.

Gypsy, That is very good news. When I started to recover ( I am not 100%) yet there were certain things I did and thought which were very helpful for me : - If you have a bad day don't freak out just know that it wont necessarily last, you have had some good days so keep telling yourself it is possible to continue that way - start to push yourself (only a little bit). For example if you haven't been out to dinner or the shops for ages - go and do it. Or maybe go for a walk. In my opinion there is a strong psychological block that must be gotten over when trying to recover. If you have been sick for so long you start to believe that you cant walk for long, you cant do this and that. Get plenty of rest though and doing whatever you can to relax is good. Maybe introduce some gentle exercise as well, but start very slow. Getting better is a process and there are up and downs. Aussie

Hi Dave NMH is Neurally mediated Hypotension. I think it can also has other names but basically on a Tilt table my blood pressure goes down upon standing for awhile. I believe with POTS your heart rate goes up and your blood pressure does not necessarily go down. Some people with POTS also have high bp as well, whereas I don't. badhbt - I would be interested to know how bad you were when you first got POTS 10 years ago. AussieOI

I would also add that it also depends on what is causing it. If you have other conditions then I think it is more difficult for it to disappear. I have read that for POTS & NMH (which I have) many people usually get a lot better between 2-5 years. I appreciate that 5 years is a very long time though!! As with anything it depends on the person but my immediate goal is to be as asymptomatic as possible for as long as possible.

Some people can rid of it and be largely symptom free for years say. However from what I have read and perhaps my gut feeling is that even if it goes away then there is always a chance it will come back - but it may not. I don't want to sound negative as I have improved loads since first getting it badly last year (although I think I also had symptoms for 6 weeks in 2011) but I think once it is activated in your body then it can always come back - but it may not. I can work full time, socialise and do many things but still not 100%. I think now for the rest of my life I will never like very hot environments for example and have to be careful of certain trigger factors.

Not sure but in Australia Nexium/Prilosec is a very popular drug for GERD

Good outcome Kooky. At least the cardio realises he doesn't know a lot about it and is willing to refer you to a specialist - great result. Midodrine and Florinef help many but I still reckon you need to establish why you are getting dizzy in the first place. Good luck

Kooky, It really sounds to me like you need to get a second opinion and see a cardio who knows a bit about POTS. I lived in London for 10 years and as a general observation some of the NHS doctors were not great - not sure if your doc is NHS. I never had POTS while in the UK so I am afraid I don't know much about UK POTS doctors. It might be that you have to go to London to get someone who knows more about POTS etc. Good that you feel a bit better on that medication but in my opinion if a cardio is presented with a patient with your symptoms then I would have thought that they really should undertake some basic testing. I know there are some UK POTS societies for memory - they might have some good tips. Aussie

I would be trying to find a doctor who knows a lot about POTS - there are some UK doctors listed here on this site. Also ask for a TTT - that is the gold standard test when it comes to diagnosing POTS/NMH You need to be seeing if you actually have OI and suffer an increase in HR, drop in BP or both when standing Only when you really know what is wrong can you begin to treat the problem Also (pending doctors advice) I would be also looking at doing some heart tests and ruling out anything there.

Good email Rama. I agree with what has been said. I do think though that exercise can actually really help control some of the symptoms and be beneficial however I don't believe it 'cures' POTS/NMH. I have started exercising and I do reckon it has helped me however there are so many variables and complexities to POTS that exercise alone cannot cure POTS in my opinion.

Mine is 1:80 speckled pattern, tested negative to other antibodies for lupus and other conditions

I am like you Rama! When I found out about Midodrine I was so excited and couldn't get my hands on the stuff fast enough! Even though it is working for me I am always interested in hearing about new medications etc. I have tried Butchers broom and licorice and they are good but not as good as midodrine for me at least. I would be interested to know how strong Butchers broom is compared to Midodrine ie is it 5% as strong, or 50% as strong etc

I also have the tingling scalp side effect sometimes but my cardiologist said that is one of the main side effects. I take 5mg once a day in the morning and if I am out in the evening sometimes I take another 5mg. I also had a concern that after a point in time I might not be able to wean myself off it however my cardio said that because it is in and out of your body so quickly there is no weaning off period. Some days I don't take it at all. Remember also that just because you take a drug now doesn't mean you will always have to take it. However sometimes non - pharmalogical measures are not as effective as we would like them to be and medication is necessary even just to stabilize the symptoms a bit.

Hi LMG, I developed POTS/NMH last year primarily after a period of being very sick after a GB/Liver issue (which I am now recovered). Basically my symptoms were very bad last year and I tried Florinef which just gave me a headache. I had 2 months off work for the GB issue but went back to work and that's when I developed POTS. I was very ill for about 4 months with it and could hardly function. I continued to work full time but could barely get through each day. I saw a neuro who incorrectly told me I just had to put up with it. Slowly though I started to improve (to be honest I have no explanation why). Anyway then I was 100% for about 3 months but then I had a blip this year for abt 4 weeks and felt bad but not as bad as last year. Then I went to a cardio who said I needed Midodrine. My symptoms are more NMH than POTS ie low bp on standing (maybe around 90-100 - the top number) and a highish standing heart rate around 100. In the morning when I walk to work though it can get to about 130 as I am very unfit! My main symptoms were lightheadedness, fatigue, low bp and palpitations. Anyway for me Midodrine is great because it just basically pushes all the blood up to my upper body, boosts my blood pressure and lowers my heart rate a bit. Often in the mornings I feel a bit off for an hour before work but if I have Midodrine as soon as I get to work I feel much better, alert etc. My blood pressure has now come up to around 110 which is much better. Midodrine only stays in your body for 4 hours. I have quite strong opinions about the use of medications for POTS and I feel if someone needs medication then it is important to try medication and find something can help then you can try to get back to a 'normal life'. While not life threatening ligheadedness and dizziness can be very disabling and mean that you cannot go out, socialise properly etc I am now pretty good however often each morning I still feel a bit tired and funny for an hr or so and often if I go out socialising and have to stand for an hr or so I feel a bit odd! I just reckon with these things give it a go, what's to loose? If it doesn't react well with you then you never need take it again, but at least you know and can then talk to your doctor about another type of medication. Aussie

Hello Julieph85, I have recently starting taking Midodrine and it has been a very good drug for me. Perhaps give it a go if it helps great if it doesn't then move on and try something else. Each drug is different and while one may not help another might. Often it is a case of trying several drugs and seeing which one helps. I don't mean to simply things and you must feel comfortable with your decision to take it for sure. The way I see it is that POTS symptoms can be so bad and if there is something that might help then why not try it - but that's just my opinion. Aussie

I actually think that this is really important to have posts like this that show people can get better. I was very ill with POTS last year bought on by a Liver/GB issue. I could barely function and had to take taxi's to and from work and was near the point of having to resign. Over the next few months my symptoms improved and I am feeling a lot better. I had a blip this year for abt 4 weeks (but not as bad as last year) and am now at the point where I can work full time, socialise after work etc I take Midodrine when needed. I am trying to do more excercise and change my diet as I am a junk food addict and don't excercise much so I am hoping with these changes things will continue to get better. I am certainly not cured and may always have some issues, who knows, but I am certain that many people can significantly improve. It can take ages and I appreciate that it is probably more difficult if you have underlying other conditions but it can happen for sure. As you say Dave many people that improve are not on the Internet sites so in many cases you are probably not hearing all the success stories.

Relax and Momto - what helped you to recover?