AussieOI

Most interesting Rama. So what's your conclusion? Which is the most powerful and best to use for POTS patients? Some of them seem to have some real negatives.

I made up a recipe which is quite nice. I put chicken and green olives, fry onions, garlic, white wine add tomatoes, chicken stock cubes and reduce it down.

It is quite salty bec of the olives, tomatoes, stock cubes.

tastes quite nice as well

I am on bc pill to stop my periods. I do have one sometimes and it is so much better now I am on the pill. I am on the low bp side so the pill is good of rme as it increase my blood volume and bp.

Periods are one of the many trigger factors for POTS.

Very interesting points Kelly. I look forward to reading your post.

The Levine Protocol sounds quite hard core and personally I think people don't have to excercise for 1 hr a day 5 or 6 times a week to see benefits. You can do less and still see results especially if you never did anything before!

I have started excercising after being very sick last year. I have been a lot feeling better this year and have introduced excercise which has helped a lot but to be honest when I started feeling better at the end of last year I wasn't doing anything different.

I love swimming and have been doing that although I wouldnt have done it so much last year when I was feeling much more lightheaded.

As everyone says it is an individual thing and you just have to find what suits you.

It is supposed to be a good vasoconstrictor. I have tried it but need to give it a good shot. I have wondered how powerful it is compared to midodrine ie would it have 10% or 20% or more of the potency of 5mg of Midodrine.

Thanks Jangle for this information. I am considering joining the gym so this could be a good excercise once I am a bit fitter

It wouldnt hurt having an MRI if your doctors agrees - it is good to rule out MS if you are having those types of symptoms.

There is an old saying that most GB patients are fair, fat and forty !

http://www.theregister.co.uk/2007/01/20/the_odd_body_gallstones/

Are there any anxiety type forums or websites where you can chat to people with similiar issues?

What about alternative therapies such as acupuncture, or even doing a relaxing activity like swimming or going for a massage (I realise these are expensive though).

What about group therapy via the Internet 'Skype' where you can talk with people in the same boat? I suppose this would exist?

I would also try and work out what things you enjoy doing and make you happy. I agree that breathing excercises, self talk etc are supposed to be good for anxiety. It is difficult as POTS symptoms alone can be scary and cause anxiety and then this probably makes things worse.

GallBladder surgery is extremely common. I had mine removed last year. Now that a lot of my friends are in their late 30's and 40's I know quite a few people who have had theirs removed.

Hello Weathermandj,

What are you anxious about exactly? I know when I got diagnosed last year I got a bit anxious and was often scared to go out as I thought I was going to faint. I never did but I did feel quite nervous. I didnt go on any meds for it as it was manageable but I do empathise.

If you are anxious about your symptom kicking off when you are out perhaps trying safe activities first could be good. What I did would be to go out with my sister who knew about my POTS and we would go for a coffee on the understanding that if I felt odd at any time then I could go home asap. Maybe trying small steps like even going for a 5 minute walk could be good.

Did you anxiety start before or after your POTS diagnosis?

Have you tried different doctors? Experimental brain surgery does not sound like a good thing to do. I would try and see if here are some meds that could help (I know you are trying with that).

Aussie

Interesting - I wonder what medication he took

Pink,

I actually am on the pill to put off my periods for a few months at a time. I was symptom free for months as I was putting off my period then I decided to have one and some symptoms came back. For me it is a definite way forward to not have periods for the time being. The pill also increases plasma blood volume so can be helpful anyway if you have low bp.

Aussie

Actually I did find this book : Jodi Epstein Rhum, author of : Pots: Together We Stand

No idea if it is any good

Hi Chlay,

My name is Kirsten and I live in Australia (Melbourne) - I am quite new to the forum as well. I have NMH (diagnosed last year) but am doing pretty good at the moment.

I would say that it is great you have joined this site there is so much information. In terms of tips :

1) Definately get a good doctor - there are a few in London (listed on this website) - I know Devon is a bit far but it is quite important to have a doctor that knows about POTS/NMH etc

2) If you need it then it is important to get some good medication - talk to your doctor but some people find that Florinef, Midodribe, Beta Blockers, SSRIs etc are helpful.

3) I have not found many books on the condition but the internet has a lot of stuff - there is a Facebook site called Pots Recovery which you might find good

http://www.facebook.com/?sk=welcome#!/groups/potsrecovery/

4) There are also lots of natural supplements that people think are good like licorice root tea, capsules etc for vasoconstriction

5) For me - Excercise has helped quite a bit. I don't say it is a cure all but getting some basic excercise is good - even if it is recumbent.

6) Another thing I would say is try not to stress out about the condition (I am not saying you are at all) however for myself I did get quite stressed at first as I was always wondering how I would feel when I went out etc. I have tried to calm down a bit which has helped me.

7) Some people swear by diet changes eg Paleo diet or as least low carb/sugar - I have not tried these yet !!

Anyway there are a few ideas !!

Kirsten.

Butchers Broom is a vasconstrictor which could be helpful for people who need to get the blood pumping to the upper part of the body to boost blood pressure

Vety interesting - I will be getting some licorice tea

I have recently started taking Midodrine around 5mg a day when I need it. I have found it very helpful and I am hoping it will be a good drug for me. I have not noticed any side effects (except scalp tingling) however my dose is low.

I have heard of it and was a bit worried that I might get it after GB removal as some people do however I haven't experienced it. Would it be worth seeing a Gastro about it?

I think you can sometimes be prescribed bile salts if your body isnt producing enough bile to break down the food. If you havnt done it might be worth doing some food intolerance tests?

What I find amusing is how you have met 10 men with POTS. I have never met one POTS person !!!!!!!!

How do you know what forms of POTS you have? Does it matter for the medication you are given? I assume it would?

Yes it doesnt hurt questioning the doctor further for their reasons - like Rama I am not questioning the doctor's judgement it's just good to ask as many questions as possible and seeking a second opinion could also be good. When I got diagnosed with POTS last year I went to a neuro who told me that if Florinef didnt work there was nothing else I could try and I would just have to 'put up with it'. She was sympathetic however ultimately incorrect.

I am now on Midodrine and it appears to be helping me a lot.

Snow drifter is your doctor one that specialises in POTS?

That is so dreadful Anoj. It is terrible to think there are people like thart out there. I am glad you are much happier now. To be honest it sounds like the best thing you did was to get out of there. Life is short to put up with that kind of treatment - it's great that you can still manage money wise and not have to work in that place anymore.

Hi Snowdrifter,

I was prescibed it about 2 years ago when I fisrt started getting some odd symptoms of pins and needles and tension headache.

They did a lot of tests on me and found nothing but neurologists love prescibing it. A very close friend is a neuro and she says its one of their favourite drugs. It's common name is Endep. They gave it to me to help the pins and needles and it helped - they went away. I believe that it is an anti- depressant however I don't think it is often used for that - it is more for odd neuro symptoms that they give it. It made me quite tired so I couldnt have it much but it gives you a good sleep.

I really wouldn't worry too much about it until you try it. It is very commonly prescribed and each pharmaceutical company has to cover themselves for every eventuality.

I have never heard of it being used for POTS though - why are they giving it to you?

Aussie