Bridam Posted April 6, 2015 Report Share Posted April 6, 2015 Hi! My name is Bridam. I have lurked here for a few months but this is my first post. I have been searching for an answer to my symptoms since October. My Cardio ( whom I have zero faith in) did the standard echo stress and EKG.. Everything normal.. I see my primary again bcause I'm no better and getting worse. He sends me for a TTT thru my cardio and even tho I would've rather been strapped to that table for a lethal injection bcause my symptoms became so bad he says I didn't pass out so everything is normal.. Huh? I know for a fact my hr was in the 180's and had every symptom except passing out. This whatever it is is destroying my everyday life, and No one will diagnose me with anything. The way I feel isn't normal. What I would like to know is there anything I can do to help myself? Is there a special diet to follow? Anything? I am so frustrated and annoyed. I don't even want to see another dr for a very very long time. Sorry the post is so long .. Please help? Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 6, 2015 Report Share Posted April 6, 2015 Hi,Welcome! Sorry you are having such a hard time. It can be an awful business getting diagnosed!! I know it's really hard when you have a doctor who just doesn't seem to know what they're talking about. Do you think you have POTS? Some doctors either don't know anything about it or they don't know enough to make a diagnosis, maybe this could have been the problem with your cardio? Anyway it's very frustrating! And I know it can feel like you never want to see another doctor ever, but it is worth finding one who knows what they are talking about and can help you. Here is a link to the list of doctors who know about dysautonomia/POTS on the DINET website: http://www.dinet.org/index.php/physician-list?view=physiciansIt's worth looking at and seeing if there is one near you that you could make an appointment with. It really is such a huge difference seeing someone who really knows what they're talking about.I'm not really sure if there's anything I can help with at the moment as you haven't listed symptoms or really what you think the problem is. But from what you said about your TTT it sounds like POTS is definitely a possibility. So try to make sure you don't get dehydrated as that can worsen symptoms. Also some people (including myself) do better without caffeine and also not too much refined sugar in your diet.Hope you can start getting this figured out.Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 6, 2015 Report Share Posted April 6, 2015 Hi Bridam--sorry you are having a hard time with diagnosis. Unfortunately many of us have. Not all cardiologists are familiar with dysautonomia, it seems. Electrophysiologists (EPs) are more likely to be of help. Perhaps you can be referred to one if you think you may have dysautonomia. I agree w BeforetheMorning, that for many of us, staying hydrated is important to feeling well. I also have found that a diet low in refined sugar has helped. Perhaps that can help somewhat while you continue to seek diagnosis and treatment. There are certainly other non-medical interventions too, including compression hose that can help. Quote Link to comment Share on other sites More sharing options...
Bridam Posted April 6, 2015 Author Report Share Posted April 6, 2015 So sorry for not listing sptoms.. Almost a daily migraine.. Heart rate rises upon standing and my eyes have this black-out sensation where everything goes black.. A head and heart rush that feels like I have too much of something going to my head and heart.. Dizzy upon standing and lightheadedness.. Extreme fatigue.. Extreme brain fog to where sometimes at the end of the day I can't recall my day.. And the list goes on and on.. Quote Link to comment Share on other sites More sharing options...
Always hoping Posted April 6, 2015 Report Share Posted April 6, 2015 Sorry for your troubles. Unfortunately they are well known here.Before I was able to get a diagnosis, I increased my salt and noticed a difference right away (rarely picked up a salt shaker before). I believe the salt and water are my main "helpers". Also, when you are ready to see a doctor again, have them check your vitamins and minerals. Many of us run low on Iron, Ferritin, B12 and D. Lacking in any of these can increase symptoms. I've heard low magnesium can cause headaches, but I'm not sure how that is tested or if this is true.Good luck and be well! Quote Link to comment Share on other sites More sharing options...
Sunshinegirl Posted April 6, 2015 Report Share Posted April 6, 2015 I know how you feel. tried for the better part of decades to get someone to listen to me. In my experience, they don't listen to women...sometimes even female drs. are no better too. I gave up so many times. What worked was documenting my symptoms, especially HR and BP constantly. I screamed at a few doctors, reported 1, refused to pay 2 for "no real service rendered".... Just because you don't pass out does not mean anything. That dr. is misinformed to say the least. Don't give up on yourself! Quote Link to comment Share on other sites More sharing options...
pooter18 Posted April 6, 2015 Report Share Posted April 6, 2015 who ever you went to is not up on POTS they have found that you do not have to pass out to have POTS that 99% of the patients just have the feeling of passing out but do have a increase in hear rate and after being upright for about a minute they cant stand to be on the table and want off..we have troubles standing in one place let alone straped to a table..here are some great seminar videos on the topic there are 3 that come up first on the screen watch the bottom one first...the finding now are differnet than when i went Mayo 8 years ago and i believe a lot more people would have been diagnosed properly had they gone by these new findings..but so little is known i guess and they are learning all the time..i just found these videos this doctor does yearly seminars on POTS and Autonomia i have not watched all of them or even the complete first one but just the frist few minutes was very interesting..plan on watching them next weekend when i have the house to myself..hope this helpswww.dysautonomiainternational.org Quote Link to comment Share on other sites More sharing options...
Bridam Posted April 7, 2015 Author Report Share Posted April 7, 2015 Thanks everybody.. I'm just completely ready to give up on a diagnosis.. They make me feel like I'm a nuisance, and just tell me I'll grow out of it.. But thanks for the great information and encouragement!! Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 7, 2015 Report Share Posted April 7, 2015 Hi Bridam,Don't give up. I know what it's like. And I'm sure a very large percentage of the other members here do as well! I went through several different people and hospitals before I actually got my diagnosis. You really need to see someone who does specialize in dysautonomia to get a diagnosis though, and they will be very helpful. Somebody above mentioned that they find salt good. Salt is great for some people with POTS but for others (those with hyperPOTS) I believe it can be dangerous, so it's a good idea to see a doctor who can tell you what's best for you before starting any changes in your salt intake.All the best,Lyla Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 9, 2015 Report Share Posted April 9, 2015 Hi Bridam,Welcome to the forum.. I hope that you will find the support and knowledge you are seeking here on DINET. Please let any of us if you need a friend! We've got tons of "shoulders!" Sarah Quote Link to comment Share on other sites More sharing options...
shathaway0811 Posted April 12, 2015 Report Share Posted April 12, 2015 Hi!I just wanted to say I've been having the same issues. I've brought up the recurring symptoms I've experienced to several different people, including a GP and both my parents who are physicians, but no one has even expressed an interest in trying to figure out why I feel the way I feel because so much of what I feel overlaps with anxiety (even though I can differentiate very easily between my anxiety-brought on symptoms and whatever the **** this other thing is.) Anywho, just wanted to say I empathize and good luck. Let me know if you come up with a solution or next steps!S Quote Link to comment Share on other sites More sharing options...
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