Newbie

[Jackie Caruso]

Hi all IM new here Im just going to give some info on me & whats going on with me right now & any input ,feedback ,advice etc is welcome

I have always had syncope incidents since age 5 but they thought it was a seizure disorder even tho it never showed any abnormal brain activity. I also have always had low blood pressure & heart rate. But I had a very active life as a figure skater/gymnast/cheerleader thru school. Then in my adult years as a Coach & Mt Biker & avid gym person. I was diagnosed at 18 with asthma & TMJ & MVP but keep leading a somewhat normal life with some set backs on occasion Suddenly just over 3 yrs ago my syncope episodes became daily & I had other symptoms intolereance to cold/heat aches /pains all over dizzy spells brain fog chest pains, axiety attacks, tingling in extremities,headaches,Much more that fell undet Dysautonomia symptoms Plus. being very tired sometimes unable to even function. My BP was normal at 80/60 & heart rate in the 40's -50' at rest. I was put in the hospital for two weeks had multipule tests run (plz ingore typos & spelling as my head hurts very badly & its also hard to type as my hands clench up from my fibromyalgia. ) THe tilt test my heart stopped while i was on it but restarted by the time they had lowered the table to the recline position. IT howver confirmed the POTS diagnosis. I am diagnosed with POTS/NCS /Dysautonomia/Fibromyalgia & Gastroparesis. I got a pacemaker while I was in the hospital & since then my passing out is MUCH better I can go sometime weeks without passing out tho I seldom go a week with out dizzy spells I still have them. Also many heart palpatation episodes. I just got a new Dr that I got on here from the list of Dr & I LOVE. Dr Mann in Berkley,MI. He put me on Midodrine & compression hose which are actually a big help to my surprise. I was on florinef but had bad side effects due to my stomache issues. SAme with taking Potassium & a couple other things. I thought I was handling everything well but recenlty it seems I have just fallend apart. It seems that it is all just now after 3 yrs sincking in that my life will never be the old life I had. I see my friends going out & I miss Mt Biking. I cant even get out of bed some days. Ive lost friends due to it. Im so depressed sometimes I wonder why Im even here. My family is very supportive as much as they can be but they dont totally understand this all. My b/f was great the first yr & half he was there when I was going thru it all as I lioved in SC with him & my family is in MI so they didnt get to talk to the Drs & see things first hand like how bad I can get. Now my b/f seems like he is tired of dealing with it & so Ive moved bk to MI where my family is but not broke up with my b/f just have a L.D> relationship for now tho IDK what will come of it. But sometimes I feel like nobody understand really how sick I feel or how hard I try bad days to get up and do things & what an effort it really is. That there are some days I really truley can not get out of bed. I need to rest. Im sorry for rambling but I have felt so alone for so long & feel like I am at the end of my rope. I just dont know what to do anymore or how to make people understand that I really do try and dont like being this way. Well thanks for listening SOrry for the long intro I am a great listener if anyone ever wants to talk plz feel free to me *hugs* to all

[CharmedLinz]

Welcome.........I'm new here too and already love the people here.

I'm surprised at how many posts I've read that sound just like me, something that I myself would write about me.

Yours is one of those posts, your words could have come straight from me about how you feel emotionally and physically.

I don't have any answers. Be grateful for your family and that you do actually have a diagnosis and a doctor who is helping (still working on mine). It doesn't seem like much, I know on really bad days I have a hard time finding anything at all to be grateful for. Like you I was a very active person until last year and now I can't even work and on some days getting up to use the restroom is a chore.

Maybe in time more research will tell more about all of this and we'll all be able to get more help in feeling better.

Hugs.

[Notgivinup]

Welcome, and sorry you have to be here. I know exactly how you feel when you finally come to the realization that your life may never be the same. It's heartbreaking, and you have to grieve.

I'ts been over 3 years for me now. I still keep trying. I do seem to have some very sporadic semi-good days, with lots of bad days mixed in.

I wish I had some words of wisdom, but I don't. I "think" I'm starting to adjust to this. You will too. And you're not alone. You'll always have all of us. It's funny how many people were so physically active before they got sick. I was the type of person who never sat down. Didn't watch much tv. Loved to just be doing things, anything.

Anyway, I'm rambling and need to get to sleep. Just wanted to welcome you, and also remember people DO get better. Maybe never exactly the same, but with perseverance can still lead a good, fun life.

[Simmy]

Yes, things have definitely changed and daily life is completely different now. A good analogy is Locutus of Borg... "Resistance is futile. Your life as it has been is over. From this time forward you will service pots."

(It helps if you've seen the movie)

Seriously though, welcome. We know how you feel. Mine came on suddenly about two years ago and by now, through experimentation and advice from others here, I've learned my limitations and what to avoid, and discovered my new best friend, squatting.

It helped me when I came to the realization that someone who does not suffer from this debilitating illness can't possibly comprehend what it's like for us to do the simplest things, like stand, unless they can somehow see the effects. That is why I'm a strong advocate for chest-strap-type heart rate monitor watches. You can get one for less than $60 and it clearly displays, for all you wish to see, the only visually identifiable symptom available.

If someone gives you the old 'yeah right' roll of the eyes, show them your heart rate standing and ask them to match your heart rate by running in place... give it a couple of minutes.

I always hear my pulse in my left ear anyway, so sometimes I sing a song in my head along with the beat. When I'm lying down it's a soft, mellow ballad, or reggae. When I'm sitting it's more like pop or hip-hop. Unfortunately, when I stand up the music changes to punk rock or heavy metal. Ahh, no wonder I get headaches from standing up.

[lieze]

Welcome-I too am still trying to get adjusted to this new life.

lieze

[brownsea]

hi, im too finding it difficult to see this way of life is my life now. hope coming on here and chatting and finding out how others get through things helps. its certainly helped me.

xxxxx

[tinkerbella]

Welcome and I know you both are going to love it here! It has given me great support and many wonderful friendships around the world.

xxx's

Bellamia