Chest Pain

[SunsetParadise49]

Ever since I was little I got chest pains. I was afraid to tell someone thinking that it would be something serious. So, when I went to have my ECHO in November 2004 I was relieved to find out that my heart is perfectly healthy...everything's the right size and all. What I'm wondering is if having some chest pain is normal with POTS or if I should get my guts up and tell somebody? Maybe this is just a silly question!!!

Gwendolyn

[AJVDK]

I have really bad chest pain on and off again for over a year. I had a doctor say it was caused by my Pots, but one time I went to the hospital my blood levels where off, another time my heart was out of rythem and then the other time they said there was nothing wrong. So I am not sure, but I do get it quit a bit!

Good luck, hope you find out what the cause is, at least if you get checked out you will not have to worry any more!

[Guest Finrussak]

Hi Gwendolyn

Always always tell the Drs about any previously unreported stuff. First it will then be noted on your history so they can tell if/when anything new pops up; second the answers will hopefully give you a sense of peace ( or at least understanding as to what and why it happens) and lastly...you never know when something is "important" for them to look further. I have had atypical chest pains for years but most is attributed to breastBONE and rib pain and Connective tissues ( due to the MTBI ( multiple tick-borne illness) some is actually heart muscle stuff/ but stress tests and nuclear med tests ( stress test after being injected, then films taken) show no heart disease etc. I have been told its basically " general inflammation", idiopathic aches, and a bit of fibromyalgia. ( my translation??? they dont really know except they always run bloods just in case...but then I am 48 and have had MBTI for last 8 yrs bad ( first dx 16 yrs ago) and my tachy/OI stuff can strain the heart, so every time I have more than a little chest pain...off they send me to the ER )

[Poohbear]

Gwendolyn,

It's always best to discuss things like this with your Dr. It's not a silly or embarrasing issue to bring up. If the Dr isn't willing to listen and investigate your concerns then they don't need to be a Dr!!

I was "brushing up" on knowledge this weekend and listened to the 2000 conference tapes on Dysautonomia available on NDRF's site. One of the Dr's (off the top of my head I can't remember which one) said that they think often in POTS patients, those that have chest pain have it probably due to the hyperadrengic stuff (ie..body being flooded with epinephrine and/or not clearing norepinephrine if I understood it right).

Of course, I don't know if this is what's going on with you or not. I have pretty severe chest pain at times but I've learned that usually it's hormone related for me. One thing that helped me a lot was having sitting/standing catecholamine testing. That gave me the answers I needed to understand what my body was doing.

[steph37822]

oops

[Guest tearose]

The only silly questions are those we don't ask! Ask until you are content!

Yes, I have chest pains. I too believe they are related to the flares in my pots and the funky way my body responds to life.

I am glad I did the echos, EKG's and the cardiac MRI. It showed some effusion around my heart and it helps knowing that my heart muscle is fine. I know I have MVP and that my heart works so hard that sometimes there will be an increase in the fluid in the sac around my heart and I will feel this pressure. It won't cause a problem unless I do too much! It comes and goes. I can tell the difference between between the sternum pangs of the MVP and the pain that comes from gastric or fluid problems. "Knowing" the differences helps me to manage my body too. Try to have the doctor help you pinpoint what is causing your chest pain and try to manage it! You will have more peace of mind knowing why and what you are dealing with!

best regards, tearose

[tracy]

Like everyone else has said, check with your doctor.

I do have chest pains also, and now I just believe they are POTS related.

A couple years back, I had a few severe chest pains, to the point of being curled into a fetus position, couldn't move, and I swore I was dying. Those were caused by a gall bladder attack, and I had mine removed. I have had some, not quite as bad, but a few, and the doctor told me it was due to POTS.

But always have it checked by doctors to make sure it isn't something major.

[calypso]

I have had all sorts of chest pain, and sometimes I have reported it to my doctor. Every test turns out normal. I believe mine goes with the POTS territory, and for me, with anxiety.

Amy

[SunsetParadise49]

Thanks everyone!

I'm just a really shy person so I will try and get my guts up to speak up next time I go.

Thanks again!!!!!!

Gwendolyn

[Poohbear]

Gwendolyn,

Just a thought....if you are really shy and have difficulty discussing symptoms with your Dr, would you feel comfortable checking off a list of symptoms and maybe highlighting the top three you want to discuss with your Dr.

Make a copy, keep one for yourself and take the other to the Dr for their files to review and discuss with you?

You could use the following link and print off page 4 of 5 and fill this out

http://www.mc.vanderbilt.edu/gcrc/ad_cente...estionnaire.PDF

Good luck!

[Guest Finrussak]

Wow Poohbear we are on the same page!!! I was sitting here listing stuff to discuss tomorrow with a new peds cardiologist for my son ( he has very suspicious dysauto like symptoms) and it dawned on me that a list may be what Gwendolyn can use...I have handed docs a brief bulleted list, had a companion ask from the list. and even just read the list ( all depending upon the Dr and his/her personality). It also helps to bring someone for moral support and tfor them to listen as well. Also my Dad taught me that the patient is the consumer...Drs are just people with extra training in a particluar field and if necessary can be FIRED...the patient is their BOSS...that sometimes helps me when faced with an intimidating specialist.

also, you can repeat what you think you heard saying gently " Dr. is that right?" or even " Did I understand it?" which helps the Dr tell if you really did get it or even more importantly, did he explain it well enough!!!

good luck Gwendolyn!!!!

[katsusu]

HI,

Chest pains does come with POTS- The problem with chest pains- is that after the docs, check it out - 2 or 3 times - then they start thinking that it is anxiety or mental- making us fear even saying it is there because if we do - we are afraid that we will not be taken seriously.

I think - we need to start documenting and sorting out the different symptoms- so you can tell the difference - between chest pains-_CHEST pains -and chest PAINS. I know that when i had chest pains that it would be more of a chest PAINS rather then Chest pain that you would compare to heart attack.

It would be nice if we could have someone design a symptoms guide or someplace where we could track the different symptoms. Something like the reply yesterday- but more descriptive.

anyways - this is just an thought

Katsusu

[Guest Finrussak]

great idea!!! problem is we all experience "pain" differntly and its easier to quantify ( as in scale of 1-10 how bad is it) than qualify---(as in type). We Lymies get all sort of head pains vs headaches vs achey heads...and we have tried at least a dozen times to list/form a check-off etc...and ended up each time with a looong paper and not much overlap, so that there was too many choices and not enough commonality.

Like with chest pain. we can ask if its better or worse when lying, or moving or if we touch/press the ribs etc. I get chest pain from both the Lyme and the POTS/OI...and I am very sensitive and have gotten very good at describing it ( to save me from unnecessary meds in ER mostly) and still I often have great difficulty in guessing at classifying it. Ultimately if bad enough I have to treat as cardiac and allow the monitors and blood draws anyway...but then I am at that "age"= late 40's- where many women's heart probs are overlooked...and I have had Lyme related heart changes for years so I am a special case.There are adjectives we can try to collect...like "stabbing, poking, pushing, pressure, throbbing" etc or steady/changing etc. maybe from the list we all add to, we CAN come up with enough overlap???

Worth a try....

[katsusu]

Yes it is hard. I would suggest a general list that everyone could personalize for themselves.....but the real objective is to make a list so people start reconizing and understanding their own smyptoms. As you know this is the pain i get from this and this is my normal morning pain- yes it is not pleasant but it is liveable- but maybe today it is same place but it is sharper , more painful and my HR is worse............... see the difference- it has 2 purpose - to let you know what has become part of your life and what you need to find out more about so you can either get answers or understanding about- then if youhave to -you can live with it. I do not have alot of answers to my problem but i learned what is symptoms i have to live with without fear- because i ahve no choice..- and i am trying to understand the ones that cause me to worry so i can move on...... but i have learned it is not till you break it down that you can really accept it.

i say thihs because i can look back at all the problems i have with the doctor and the disease that now I have become wise as far as my body goes- and besides..who knows your body better then you?

Katsusu

[pamela]

Thanks everyone!

I'm just a really shy person so I will try and get my guts up to speak up next time I go.

Thanks again!!!!!!

Gwendolyn

<{POST_SNAPBACK}>

I have had chest pains from a pressure feeling, sharpe sudden pains and a pain I can say that is worse than anything ever beause my body said this aint right. Luckily that pain happened at the hospital while I was being treated for Syncope. I ended up having a inferior MI, Hypokalemia, and way off blood work and echo's. I knew that I had a murmur, and some Tachy episodes before but this was wose. A tilt test done in CCU said OI due to hypovalemia. That I would recover and was sent home. @8 hours later I ws admtted again this time a tilt table test showed diagnosed me with POTS. Needless to say the chest pain tells you that something in your system is not right and I feel that the mildest POTS symptoms have the milder CP's and when your Tachycardia and BP get to out of whack the Chest Pain means E.R. ASAP

I am 32 with a Blood disorder that causes me to clot, asthmatic, reaccurent hyperglycemia episodes, hypkalemic (low Pottasium) anxiety (dah) and pots