pots

[hayley]

hey ive just been diagnosed with pots two months ago dont no much about it im waiting to see a doctor in london england.i wanted to no will i hav it forever or will b it go away.i faint about 8 times a day and i wish it would go away.

[twobyfour99]

Hey there!

8 times a day! Man, I thought it was bad that I fainted once a month! Wow! What do they do for you???

I have heard that POTS is something that comes and goes. Meaning you can have a long period of time where you feel the symptoms and then they can kinda go dormant for a long period of time too. So it's something that will probably never officially go away, but does have hope for happy days ahead!!

That is my understanding of it so far.

Did they tell you to increase salt, water, etc? All that good stuff!!

Frances

[corina]

Hayley,

isn't it possible for you to get seated or ly down before you faint? That does work for me. The possibility of fainting is one of the things of POTS that stopped me from working and keeps me in the house or go out by wheelchair. It must be awful for you to deal with this. Since you have been diagnosed two months ago didn't your doctor prescribe you any medicines? I'm on midodrine (to keep the bp up) and betablockers (to keep the heartrate low) and further on I rest a lot during the day (thats not too bad, now I can watch Wimbledon every day ) and when someone has some time left they take me out (using my wheelchair).

Did I understand you live in England? You're the first european POTSy I meet (I live in Holland and my neurologist told me there are just a few potspatients in Holland so I was very glad to find this forum. The people are very nice and supportive here and there is very much understanding since we all share the same crazy POTS). Love from Holland,

Corina

[hayley]

hey me again yes i am from england.i have had not alot of imformation on pots i saw a cardiologist who has no idea about pots he prescribed beta blockers which are helping a bit but never said anything else as he doesnt no.the only information ive got is from the internet.im supposed to be getting an appointment for someone who specializes in it but ive been waiting and waiting for the appointment to come through maybe il get one sometime this year.my fainting interferes with everything i went out with friends the other day and fainted in the pizza place i find it so embarassing.my one wish is to stand in a queue in a shop.i have to wear those horrible support stockings all the time anyway thanx for replying to my message.

H x

[MightyMouse]

Welcome Hayley,

For some people, POTS may come and go. For some, they may fully recover. For others, it may be a life long issue (such is the case for me).

In order to better understand what's happening to your body, you should read the following pages in the main section of the DINET site:

http://www.dinet.org/pots_an_overview.htm

http://www.dinet.org/what_are_the_mechanis...sms_of_POTS.htm

http://www.dinet.org/what_to_avoid.htm

http://www.dinet.org/research.htm

Also, NDRF offers a free pdf book download, Handbook of Dysautonomia.

http://www.ndrf.org/NDRFHandbook.htm

Nina

[Merrill]

Were you fainting 8 times a day prior to your diagnosis? Or have these fainting spells increased since you started on your beta blocker?

It sounds like the only medicine you're on is beta blocker--which my cardiologist said he would NOT put me on unless I was also on a medication (like midodrine, which Corina mentioned) that causes the veins to constrict.

Tachycardia (rapid heart rate) is a necessary evil for people with POTS--the heart beats fast to get adequate blood up to the heart and brain when we stand up. (The blood is pooling in the legs because of a dysfunction in our autonomic nervous systems; normally, people's veins constrict automatically when they stand, and this gravity-defying action gets the blood flowing properly back to the heart and brain.) If you slow the heart with beta blockers but do nothing for venous constriction, it makes sense that you would faint more--or have worse POTS symptoms overall.

Take care--and welcome to the forum~

merrill

[corina]

merril,

you are so right about using beta blockers and a medecine like midodrine. I'm trying to lower the beta blocker (from 300 I'm down to 200 a day). I know that's very high but for some reason I just can't function without the beta blocker. That's where we all react differently I think. But let's keep smiling and fight

Hayley, do you watch Wimbledon as well or isn't tennis YOUR sport? It was mine but I now like watching as well. (I wasn't that good either )

Corina

[tsampa]

hello,

i'm also leaving in europe ( in switzerland). In my country there is no doctor for pots so it is very difficult to be understand. 5 years ago i go to italie to have the confirmation of a specialist that I have pots.

At the beging it is difficult to accept to have this illness but with the time it is going better.

the doctor in milan say to me that i must do 1 hour every day spesial exercise for my legs. when I'm doing that it is going better and better. since 2 years i'm doing no sport because i was to tired and now i'm feeling very bad.

Do a lot of people who have pots have diarea ?

take car of you

tsampa

[hayley]

thanx for all the information

[briarrose]

Please see these articles

http://home.att.net/~potsweb/POTS.html

http://www.potsplace.com/

http://www.ndrf.org/

http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm

http://www.cfids.org/about-cfids/orthostat...intolerance.asp

http://pediatricnetwork.org/medical/CFS/be...ry/oi-intro.htm

http://pediatricnetwork.org/medical/OI/

[hayley]

ok thanx

[briarrose]

Hayley

Many people, including doctors don't know what POTS is. I went to the copy print store and spent about $75.00 copying the best articles that I have. Then I put them in 1/4 inch binders and gave them to my doctors here in Oregon. It was worth every penny that I spent. The NDRF has a nice pamphlet that they sent me and I put that in the front. I have a couple of articles from DR. Grubb that have been very informative.

That is the best way I have found to communicate to people about our illness.

steph

[opus88]

Hi, Hayley!

When people ask me about my health (they never believe I'm "sick" because I look quite "normal"), I tell them that "my autonomic nervous system - which regulates automatic body functions such as heartbeat, breathing, digestion, elimination, thinking and more - has a mind of its own and there isn't much I can do to stop it. I therefore struggle with numerous seemingly unrelated symptoms (often I will give examples of what I've dealt with), sometimes experiencing what seems to be all symptoms at once or very sudden, and other times it's relatively mild."

If they are curious, I'll tell anyone whatever I can about my own experiences and what I've heard from others . . . until I see them glaze over - ha! But I feel a need to educate people, hoping this will someday be taken more seriously.