What helps?!

[jen201041]

I have had a horrible flare up of my POTS and have hardly left my house in a month because it has been so bad. I feel like I start to see some improvement but then it just gets horrible again. What do you do when you have a flare up to help get back to "normal" POTS symptoms?

[whittle]

Sorry I could not find my glasses last night.  It should have read out of bed :).  I'm not sure  if tea raises bp more than coffee but coffee gives me eptopic beats so I avoid it.  I have not got much time now but I have updated my blog today under the comments heading when I answered someones question.  It will show you hoe I got better. If you get time have a look.  I hope the blog will help you
Speak soon
Lynne
My blog http//lynnecampbell.blog.com hope it is of use

[Sharingme2]

Thank you Lynne for taking the time to tell us what help you.  We need each other because so few people understand what POTS is like.  Thank goodness for the internet or I never would have discovered what I had, and been able to talk to others with it so I feel less alone!

Above you said you eat GI foods...did you mean low GI foods?  Does tea raise blood pressure more than coffee?  Also you mentioned an "outbox" in your first post, what did you mean?  It was about exercise..  Or did you mean "box exercises" and in that case, I don't know what that is either  LOL  But it seems that you know about exercising when you pretty much can't do anything (which is in my case) so I want to understand what you do.   I totally agree with you about the panic, it makes everything worse!  Sometimes POTS feels so bad that you feel like you will die, it's important to remember we won't.

Thanks again Lynne!
Shari

[whittle]

Oh eat GI foods.  Little and often.  Drink tea as it raises BP.  Organic is better.  It's better for u than coffee as it does help the immune system.  I do still have flare ups.  I think stress is a major cause of pots.  It was in my case and I know the flare ups are caused by stress or when my period is due.  But as long as I force myself to go for a walk and stay out of bed gradually I get better.  Pots is a terrible illness.  It's always round the corner.  But we are not going to dye of it and the main thing is to try not to panic as this makes the heart rate worse.  Sorry these were rushed messages but hop they help
Lynne

[whittle]

I came down with pots in 2008.  I already had marfans syndrome which I was born with.  I was admitted to hospital in may08 and spent most of the year there.  I am better now.  My battery is running low but here is how I got better
I take paediatric atenalol 3 times a day 5ml.
Seroxat 10mg 1 tablet per day
Exercise is curtail.  If u can't get outbox bed exercise your legs in the air like riding a bike
Then when u r a bit better get a lying down exercise bike
I think hormones play a big part.  I am 46 now and I think they effect young girls who get pots.  I have a mirena coil now (sorry not sure that is spelt correctly) and since I have had it am much better.
I started to smoke again.  This raises blood pressure.  I would not recommend it but it works for me.  I will write again when I have more battery
Lynne

[Sharingme2]

Jen, the link to the article you sent me to was AWESOME!!  Thanks for pointing me in that direction.  I am going to discuss the article with my doctors this week.  I am seeing 2 new ones and wil be picking their brains to see if they know enough about POTS for me to keep seeing them.

xoxo
Shari

[Sharingme2]

Hi Jen,

Thanks for the link, I'll go check it out!  Are you feeling any better?  I am starting to feel better.  I have been on a very low dose of Midodrine for a week and something is helping, and thats the only thing I have changed, so I am assuming its that.  I am incresing my dose a little today, working my way up.  I have 2 doc appts next week, one is a cardiologist on friday.  Hope to get more answers soon.

Shari