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Results Of First Cardiology Consult


lauralulu

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So, the summary of my appointment is as follows:

1. I have "Inappropriate sinus tachycardia."

2. It's a benign problem

So 3. Don't worry about it and

4. Fatten up, because my 'build' is making me 'feel it' more.

When I showed him info on POTS and asked if he thought it could be that, or if I could be tested for it- he was dismissive and said

5. You could be tested for it, but even if it is that, there's nothing you can do for it anyway.

Conclusion:

Come off my trospium chloride because it can make IST worse. (Which means I will be back to being chained to the bathroom as I will have to pee every 15-20 minutes).

Forget about it.

I feel incredibly frustrated, angry, ignored, dismissed and upset.

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Ignorant, time to find a new cardiologist or neurologist that knows how to do a tilt table. Obviously he is wrong because many things can cause pots and there are many tests and treatments to be done depending on the findings.

I know it's frustrating to find another doc, but that's what you've got to do. Oh by the way bladder problems are part of this syndrome. It is very often seen in small fiber autonomic neuropathy. Though my bladder problems are minor SFAN is what is causing my pots, diagnosed by skin biopsy and TTT. The treatment my neurologist wanted was IVIG, but insurance said no experimental, so now I'm waiting to see if they approve plasmapheries.

Chin up, warrior hat on, find a doc who will listen to you. Good Luck honey!!

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Thank you. I knew you guys would understand, thank GOD I have this forum!

I got the distinct impression he knew (pardon my french) jack **** about POTS! I mean, saying there's no point being tested for it because there's nothing you can do anyway! How ignorant! And he didn't even mention a TTT so obviously he's clueless about it. Which is fair enough, you can't expect people to know EVERYTHING but to just dismiss it the way he did, despite all my symptoms like the bladder and the excess thirst.

Am definitely going to ask to see someone else. Luckily, I found someone who works locally who is listed on the STARS website as having interest in POTS.

I really don't know how to COPE without my bladder medication, I'm freaking out! Before I had it, life was so miserable, I couldn't go anywhere or do anything because I HAD to be constantly near a bathroom, using it every 15 minutes if I was keeping my fluid intake up appropriately; the only way I could leave the house was if I purposely didn't drink water, which is horrid because then I'm dehydrated (and that's no good if I do have POTS!).

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I'm certainly no doctor, but I wouldn't go off your medication until you see another cardio/neuro who knows what they're talking about. Obviously this guy you saw was not up-to-date on his knowledge of POTS and causes/symptoms, so give yourself relief until you find a doctor that you trust.

Good luck, and best wishes,

Jana

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I cant believe he said that to you...well...yeah I can, becasue my cardio has said the same thing. While IST alone is not deadly, it sure as heck FEELS like Im dying on a daily basis! HUGS to you. Glad you found a doc nearby that specializes in POTS. I would not go off your bladder meds until you see the other doctor. WHile IST is not the POTS dx that you were looking for........it is a start in the right direction. My IST is worse then my POTS I think anyways, and the massive fatigue I have the DR says is from the heart racing all the time. It makes the body think its running marathons. Good Luck!

~Kelli

btw....when I was crying about quality of life, my cardio says............."Your life will be completly miserable, but your not going to die" :) GEE THANKS!

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OH MY GOD. I CAN'T BELIEVE (well, I can just about, after personal experiences but still) THAT HE SAID THAT TO YOU EITHER!!!

Thanks for all the support. It really helps to have people who not only understand, but are also intelligent, strong, capable human beings who've had to put up with this crap!

Also, he did mention I had to 'weigh up the pros and cons' of coming off the medication and whether the worsening bladder would be worth it if the tachy got better (which, tbh, it wouldn't). So I'm going to keep taking it, but as he's writing to my GP advising me to come off it, I may not be able to get it next month. So will have to see what to do then.

There is a cardiologist working in my local area who has a 'special interest' in POTS who I might ask to be referred to. OR I am even considering going further afield, to Julia Newton in Newcastle, because I've heard good things said about her, and after meeting people like my cardio today, hearing patients reports that they are happy with the treatment and CARING from this person make me feel inclined to have the hassle of going further afield, for better treatment.

I am confused as to why I have the IST diagnosis though, because my resting heart rate is usually around 80bpm. I know that's probably higher than an average person my age, but it's not 95+ and my HR has been known to drop into the 70s when I've been laying at rest. It makes me think he could be wrong.

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So sorry for his rude manners. I have IST, PACs, PVCs, and one bout of non sustained v-tach. Seen three different cardios this year. All say the same - get back to your normal weight, too thin, do your best to exercise and deal with the tachycardia and the more you exercise the less tachy you will be.

Grrrrr. They are clueless for sure. I truly believe it's because we are women.

Hope you find a dr that will take you seriously. I'm still searching!

Rene

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I'm sorry you've had such bad luck with your cardios too Rene. It really is beyond frustrating!

The weight thing is so annoying as well because I've ALWAYS been this slim, and I CAN'T AND DON'T put weight on (despite eating plenty and healthy). So it's not like I can just put weight on! I'm 5'5 and 9 stone so it's not like I'm size 0 or anything, jeeze.

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Many many clueless physcians out there. The best we can hope for sometimes is if thye don't know to refer us out...my neurologist is insisting on Mayo for me....

It is so frustrating...I have gotten more attention from physicains from having the flu...I was laughing with my neuro and said "next time i want to get something that can be fixed and that people know somthing about!"...I love that man...he has always been in my corner. He really didn't know what was wrong after I got a virus last year but he at least believed that something was majorly wrong! SEVERAL months later a good EP did a TTT and figured it out.

Anyway...don't let them blow you off! Keep going until you find someone who will help you! Try not to get discouraged. It is difficult to feel so awful EVERYDAY and not given any real crediance to our symptoms.

Hang in there..Erika

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NEXT DOCTOR FOR SURE!!!! Move on and try not to dwell on that bad advice. Keep searching ... That doctor just goes on his merry way and continues on with his life without another thought about it! It's not about him it's about you and you need to take care of yourself!!! I hate that that happened to you but don't stop there!!

Brye

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Thanks for all the supportive responses, I feel much more bright and positive today so am not letting that Dr bring me down. I'll just find someone else! Annoying to have to, as you always hope that 'this' Dr will be 'the one' but it's not the end of the world. I think trying to find 'Dr Right' is harder than finding 'Mr Right'! lol. :ph34r:

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