Frustrated

[Ida22]

I've been to my doctor today talking about POTS.
She don't know what to do. just saying that I need to accept that I will not be able to do what other do.
Thats fine, but I got no diagnosis... starting my education next week. will I be able to finish it?
Because of my medication treatment I think that I have a mild version of POTS but still I have problems to handle this. Somedays I got colic-pain when i'm eating, and I get gas and diarrhea(and because of this I some days choose to not eat at all). feeling nausea that again doesn't make things better. when I'm standing supine I get a heart rate 160. I really hate stairs. sleeping problems. and so on.

She wanted me to talk with my cardiologists about POTS. Does cardiologst know much about POTS?
I don't like the cardiologists, all they can see is the clock and ECG's.
If I dont finish my education I will get a big debt. I hope my body will help me and tolerate more.
When I'm sitting still and follow the lection my HR is 50 and my BP is running low. I have exprience to faint when i'm sitting still. And if I changing to supine position my HR goes up, but too much...and then I also faints. great.

I'm so tired of this. I don't want to be in this situation. I'm in the middle.
Between RVOT and ARVC: RVOT is benign and causes arrhytmia like ventricle tachycardi, but you don't die of it.
ARVC is a cardiomyopathy that causes sudden death. The right ventricle mays become progressively more unable to function efficiently due to muscle cells being replaced by fatty deposits and fibrosis.

I may got RVOT or ARVC, they aren't sure.
and then this POTS situation.

I want to give up.
But i really likes this forum. It helps me.
Thanks

[Ida22]

hi everybody,
Thanks for the respond. Its a great help.
I'm back in school. my symptoms is getting more intenst.
I feel tired, but happy.
I have great teachers, great people in my class, exciting subjects. I'm starting to feel that it is the right education for me.
I feel happy, its all so exciting.

but, always a but.
yeah, I starting to have more  presyncopes and syncopes, I have a lot more arrhythmia(PVC, AIVR and sinustachycardia, and some bradycardia). more dizzy. cant sleep, not hungry, always tired, cold, nausea, stomachpain. etc...  

all of this make me feel divided: - happy and kind of down.
It's 5 months to my next appointment(with cardiologist), and its a regular check up(echo, & the reveal device). My plan is to hang in till the next appointment. If this gets worse, I will try to contact my hospital. especially if I starts to get reentry VT.
I think I can handle this for 5 months. if not, I may have to move back to norway to my mother. I'm only aloud to get medical help if im a exchange student.

thanks for all info, support and the funny list of the consultation of norwegian cardiologists. its the same in denmark;)

ps. I found some people on dinet.org that also have POTS an VT. Im waiting for the account- approval so I can contact them. looking forward.

have a nice day/evening everybody!

[mtgardner]

There is an autonomic testing center and a doctor listed for the Netherlands.  Not sure if this might work for you.  Marie

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

[mtgardner]

The experts are at the autonomic testing centers.  Getting tested there and having them come up with a plan for you would be ideal.  Nor sure if they have testing centers in Denmark but your can consult the Dinet site for doctors and at least see if any there treat this.

You need a good general doctor who will work with you to find help for things as they come up.  You need a good GI doctor if you are having GI symptoms.  You don't need to just "accept" that you have  GI problems you need help with them.  Many people with dysautonomia need help from a GI specialist.

There are lists of things to avoid on the Dinet site as well.  It helps to know these and also you can copy them as well as other things from the dinet site for your physician.  The free online handbook about dysautonomia is also helpful . Also you may need accommodations at your place of education.  Pacing yourself and acceptance doesn't mean you don't seek extra help from professionals.  If your general doctor is not active in helping you find help with symptoms then find another one more receptive.

Most of us do not live near specialists who know about dysautonomia.  We have to travel to get to testing.  There are some doctors you will encounter that don't seem to help you.   I would say to try to find the ones who can help.  That sometimes takes some weeding out.  Good luck with this.  Marie

[Mom2four85]

I'm not sure how it is there, but my cardiologist & ep both knew some about Dysautonomia (thankfully) and suggested my tilt table test.  

I really think it depends on the dr and what they've been practicing (sorry just lost my train of thought) hope that makes sense.

You may want to check the sticky on the front page and see if you can find a dr in your country that has knowledge of pots/ans problems - I know the Dinet . org site has a list of doctors like here also =)

[is_something_wrong]

I really hate cardiologists too. I don't know how the danish ones are, but norwegian cardiologist consultation is kinda like this:

1. Nurse guides you to the EKG machine.
2. Nurse hooks you up on EKG and usually misplaces some leads.
3. Nurse starts BP machine and EKG recording, simultanously.
4. Nurse sais (sh*t, this EKG looks strange)
5. Nurse looks at the BP which is through the sky due to her last comment.
6. Nurse connects the EKG leads correctly
7. Nurse doesn't care to measure BP again.

5 minutes later

8. Cardiologist entering, on his little floating cloud.
9. Cardiologist sais EKG is normal
10. Cardiologist sais BP is somewhat elevated.
11. Cardiologist explains what exercise is and claims it's a really good idea.
12. Cardiologist doesn't care for my explainations about white coat hypertension and he especially doesn't care when I say my blood pressure is normal any other time when his clumsy nurse doesn't make me a nervous wreck.
13. Cardiologist sais running is exercise. Walking and climbing hills is useless.
14. Cardiologist ignores all my questions about arrhythmias and turns annoyed when I question him.
15. Cardiologist sais: You're fine, go see a psychologist.
16. Cardiologist looking at the clock.
17. Cardiologist ask you to leave.

2 days later

Invoice in mail.

I hate cardiologists :p

[bluewind95]

Wish I had more helpful comments, but...

THe acceptance that we can't do what others can is, I think, the hardest part, especially when others don't seem to be able to accept it either. But who knows... precisely because we do know what it's like to be sick all the time, we also get strengths others dont'. I mean... I can't imagine a healthy person at all being able to deal ith the chronic fatigue and other such things that come with being sick. Not for more than a week. And we've been doing it years. (Oh, yes. I hate stairs too. How I feel your pain there!)

Anyways... keep going. Getting a diagnosis (and esecially the RIGHT one!) is a long process mainly because these are issues even the experts don't quite understand. So it's a longer road for us.

But you can do it! YOu've come this far, don't give up!