Jump to content

Another New Member


aclexis
 Share

Recommended Posts

Hello everyone!

I thought it was about time I posted :D I've been so busy with college & ye all know how hard it is to concentrate after a long day (of oh bout 5 hours!).

My story is that I'm 24 year old woman diagnosed with POTS in November. It was first mentioned in March but my cardiologist didn't seem happy with the dx so I thought he was still looking around but he confirmed it there a few months ago with a TTT. I've been symptomatic since the July 2004 after waking up from a GA for a gynae operation. Besides the pre-existing gynae stuff and the new cardio stuff I also have the joy of suffering from IBS, nausea (that particular workhorse really needs to take a holiday but alas it seems to like me) and thermoregulation problems.

Today is a good day so I thought I'd post and say hi in a positive way. It's a good day cos I'm having one of those "I CAN live with this" periods even though right now I'm tachy as heck after sweeping the kitchen floor and typing is fun cos my hands are kinda shaking. Today I can smile but tomorrow might be different so please understand that I really appreciate this forum and everyone who posts and shows so much compassion and empathy for the days when things don't seem possible or when they just simply are impossible.

I live in Ireland and would love to hear from anyone who knows of a doctor who has an interest in POTS or general weirdness that accompanies a POTS patient. As I mentioned previously, I don't think my doc is happy dealing with me as he just gave me some betablockers and told me to get on my way (but in a nice and decent way of course).

Oh dear this is a long post, my apologies! I look forward to posting more frequently in the future and hope everyone is having a not-so-bad day :).

- CJ

Link to comment
Share on other sites

Welcome to the forum!!!!!! I know what you mean about good days and bad days. This illness reminds me of a rollercoaster ride. I also got this illness in 2004 but in August.....reason unknown. Well thanks for posting information about yourself and I hope to get to know you better here in cyber world.

Hang in there and don't give up on your "I can live with this illness" outlook because you can and I'm sure you already know it's quite a ride.

Dayna

Link to comment
Share on other sites

Hello CJ,

Welcome to the forum! You will love it here------------loads and loads of information to educate yourself----and of course lots of support and hugs.

I hope you find a doctor who is knowledgeable about your POTS, and you can get a treatment plan that will help you stay as functional as possible.

I don't know of any physicians in Ireland--------------

Check out the physician link from this web site: there are some listings in the UK----- ;) .

We have some good Docs over here in the US, but I must say all of this is still a big learning process over here too.

Some day I want to go to Ireland-------I have always wanted this, but I'm so scared of flying, that would be the only sensible way to go. I would take s hip, but that's a lot of money----and we haven't got the time--- Both sides of my family are from Ireland, and the UK---with a little swiss thrown in there. I'm 47 years old, and you are a year older then my son. My 25 year old son is my life---I love him dearly, and he is so fun to be with-----sooo funny too------- B)

Best wishes to you CJ,

Maxine :0)

Link to comment
Share on other sites

Welcome to the forum CJ!

The only other member I know on the board who is from Ireland is KathyIreland (that is her username) and you may be able to find her doing a search (top right corner) and email her or message her personally to see who is treating her?

I LOVE Ireland soooo much. Where in Ireland are you from? I was able to travel with a friend there for 10 days and we drove around the country...then it was off to University of Sussex in Brighton to study for a semester.

Glad you were able to post today...and I hope that you find some competent medical care soon!

Emily

Link to comment
Share on other sites

Guest tearose

Welcome to the board!

I am not Irish except on St. Patrick's Day...then call me O'tearose! <_<

I do love Ireland though! I think the countryside is so beautiful and the air was always so crisp and clean! I love warm merino wool clothing and can't get enough of hearty Irish soups and breads! You can pass the haggis...back to Scotland! :rolleyes:

Anyway, welcome to our international Pots group! I hope you feel at home soon.

Please try to get the tachy under control and you will probably feel much better! Can you sit down as soon as you feel a spell coming on? Have you started using compression pantyhose yet? I personally can not make it through a day without compression. It is my main treatment for my POTS.

best regards, tearose

Link to comment
Share on other sites

Hi, CJ:

Welcome to our little niche on the internet! I hope you find this site encouraging and informative. Sometimes it's great just to know you are not alone, and then other days, when you're a little better, it feels refreshing to be able to encourage someone else. I've only been here for a little over two months, but the community here has already made living with this illness so much easier.

I look forward to seeing more posts from you. :o

Deucykub

Link to comment
Share on other sites

hi CJ -

just wanted to add my welcome. i'm sorry that you had a reason to do so but am so glad you found us. i'm 25% irish. my grandmother grew up there before moving to england (where my father was born) before eventually coming to the US were we are now. most of her family is now in england but she still visits ireland every few years. one of my regrets is that i never got to visit before my health progressed to where it is now. but i digress...

welcome welcome!

:( melissa

Link to comment
Share on other sites

Hi CJ, Welcome, I live in Scotland and. When I was diagnosed, none of my family and friends had heard of POTS..... I found this site and it has been a god send, members are helpful and very supportive. I use the site as often as possible and although I am new to this condition, I have had load of identification with members. Initally, I thought that my symptoms were not that bad, and maybe the DR had got it wrong. However, after reading personal stories. various topics, and posts, I accepted that YES I do have POTS and having this Forum has helped immensly. I learned to manage my symptoms better and as someone already said, compression stockings are great, I wear them all the time. Keep in touch with the members and you'll learn lots about this "hidden illness", that's what someone else described it as and I think that is soooooo true.

Take care

LizBx

Link to comment
Share on other sites

Hi CJ! I'm a fellow Celt from the Tartan isle rather than the Emerald one. I'm 25, so almost the same age as you. Rose Anne Kenny, who used to run aSyncope clinic in Newcastle moved over to Dublin in Ireland either last year or the year before-

you can google search her or have a look at www.stars.org.uk

Trudie Lobban, the director of the British Syncope Trust might be able to point you in the right direction regards getting a referral.

Let us know how you get on! :lol:

Are you working/studying/staying with family at the moment? Hope the illness isn't too debilitating at the moment for you.

Link to comment
Share on other sites

Hi CJ,

Where abouts in Ireland are you?

My mum's irish - from just near belfast so i try to go over every year and visit cousins and stuff. I'm 25 as well - one month older than persephone! i was twenty three when i got diagnosed with pots and it has been quite tough too come to terms with, especially when it comes on quickly. But if you need anyone or any advice then we are all here to help you.

Big hugs becks x xx

Link to comment
Share on other sites

  • 2 weeks later...

Thanks to every one who replied to my post!!

In response to some of your questions here are some of my answers: My location is varied, I'm originally from Tipperary, spent 5 years in Cork in college and this year I'm studying medical physics in NUI Galway. I try to get home every second weekend cos (a) it's good to see the parents & extended family and (B) my parents know that when I'm tired, it's time to leave me alone to rest. Unfortunately my friends in Galway are still new and getting used to my bizarre list of symptoms. It's hard for them to understand that when I have a few good days I go all mad & actually see them all week in college and at the weekly seisuin (class get-together). They think I'm normal & then another day my legs go all wobbly & the world goes grey & they don't see me for a few days or when they do, they see me nibbling salt & drinking pints of water. I love the fact that people here know what that feels like.

As for compression hose I'm seriously considering them especially since so many posters have good things to say about them. As my life stands (pardon the pun!) at the mo, I'm fairly flexible with college and I can take life at my own pace most days. I worry about the future and coping with a job but that's at least 6 months away and I have a few doctor's appointments between then and now.

DancingLight: Thanks for the info regarding Kathy Ireland.

Persephone: Thanks for the details you gave me - I look forward to doing a bit of research!

Hope everyone is doing ok & thanks again!

CJ.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...