Jump to content

Chest Discomfort, Shortness Of Breath, Dizziness


Tessa
 Share

Recommended Posts

Hi :(

I am having chest discomfort, shortness of breath and dizziness. It comes and goes, but it is the whole day round. Sometimes, even while sitting.

And I have not found a specialist yet for POTS... I am feeling hopeless.

I have to go to my GP tomorrow to collect my blood tests, though I am afraid of telling him my symptoms. He has no idea of POTS. The last time my husband and me mentioned something to him, he said POTS was a vasovagal syncope, nothing serious but just some faintings... :huh:

I think I am worse since I had the blood test done... And it goes worse, I would say...

I am not sure if I should go to the ER. I am afraid they would follow their routine (Xray and blood test).

I do not think I would stand another blood test... If not Anemia, I can have hypovolemia... If not both...

And I am sure they will not know how to treat POTS... Even though I have no diagnosis yet...

But, what else can I do?

I cannot even stand for too long in the kitchen cooking... :blink:

Yesterday, I had to lay down after having been cooking. I was feeling dizzy, exhausted, lightheaded, with nauseas, chest discomfort and shortness of breath... I slept for about 30 minutes... Though it was time for lunch...

My husband is worried and so far, me too.

We are at a point of not knowing what to do.

;)

(I am taking

Inyesprin oral forte 1.8 g, which is -acetilsalicilato, lisina - similar to Aspirin but also antiinflammatory.)

Link to comment
Share on other sites

Tomorrow,

Hold your ground with the doctor. Take your husband with you if you need support. Your symptoms are real and they are important.

Tell him it is very important to you that you have a diagnosis. Tell him your symptoms, and bring along a POTS brochure from this website if you have to, along with any write-ups from this site.

Ask for a consult with a cardiologist, who may know a bit more about POTS than your GP.

And, let us know what happens.

If you are to fearful of standing your ground or if the doctor ignores your request, you must find a doctor willing to listen. This is your body and your life.

Do not let your fear of this doctor's response to your complaints define your life.

You can do it. You'll be okay. Be very clear in your own mind WHAT YOU WANT from the visit tomorrow. Write down questions and concerns ahead of time so you won't forget what it is you want from the doctor. If it is a referrel to a cardiologist, get it. Don't leave without getting what you want. Good luck!

Link to comment
Share on other sites

Hi futurehope

Thank you for answering my post. ;) I deeply appreciate your support.

I really need to see a specialist who knows about POTS... I cannot continue this way.

I?ll write it all down for my GP, symptoms, etc. and hope to get the authorization for a consult with a cardiologist. Though, these things do not work so quick here, as once he gives the referal to the Cardiologist it can take a few months to get an appointment with him, but at least I will get it. (I hope).

In the event of giving a proposal for the cardiologist on a normal basis, it can take 4 to 5 months to visit the Cardiologist. In the event of an urgent proposal, it can take 1 to 2,5 months...

Do you think I should not wait for that long?

Do you think I should go to the ER if I do not get better?

Once more, thank you for your help,

I?ll keep you updated.

Love,

Tessa

Link to comment
Share on other sites

I second standing your ground. You need someone who understands or who is at least open to the idea of pots/dysatuonomia.

I don't have one either, but the cardio I do so does at least whatever he can to help with my symptoms even though he is so so on the idea of me having dysautonomia. His eyes dysatuonomia is the severe kind, no in between ;)

Please let us know how it goes. :blink:

Link to comment
Share on other sites

Thank you Mom4cem

It is so important for me to read your support and help. :huh:

I am facing a bad time... I just finished preparing the notes for my GP tomorrow.

My husband agrees with you. We need someone who knows about POTS.

I?ll let you know, as well as about the blood test results.

Love,

Tessa

P.S.:

It has been so sad tonight. I have been unable to walk a short distance to the bathroom without my husband?s help, I was feeling so dizzy... I could not keep my body in balance... ;) I am still dizzy while I am writing, but it is worse if I am standing... And then comes the chest discomfort and shortness of breath.

:blink:

Link to comment
Share on other sites

I don't know how things work where you are, but here, if you want to see a specialist, and it is urgent, you can often do so by going through the ER. In fact, that's the ONLY way to get certain things down quickly. I have learned this the hard way-- if I wait to call the doc's office, and they send me for tests and to a specialist it can take months here too. But, if you show up at the er,and say you have CHEST PAIN, and all the symptoms you describe, at least where I live, they would keep you overnight, and get you a consultation with a specialist as an inpatient.

Late October, like you, I was having chest pain, lightheadedness, and shortness of breath while walking. Because it was on exertion, they were concerned it was a blocked artery in my heart, so they kept me until they could get a stress test done. Same thing in May, I had one-sided weakness, and they kept me to rule out stroke, I was seen by a neurologist the next day and had an immediate cat scan, MRI and MRA.

Given that your symptoms could be many things, even if it is POTS, no American hospital would let you go home.

One caveat, it's only been in the last year that they've been keeping me. It could be that now that I"m older (39?), they're less confident I'm just a young, neurotic woman. The fact that I also have eds makes them nervous too.

Link to comment
Share on other sites

Tessa,

Being as you are anxious about your symptoms because you are not sure the cause, (if you choose not to go to the ER), be sure to say to the doctor that you have concerns about your symptoms and does he/she think this is a medical emergency that needs attending to right away? "Do I need to be seen right away?" "Could this be my heart?"

Most doctors here ere on the side of caution to prevent lawsuits.

Like one of the other posters said, if you presented with your symptoms in the U.S., more than likely they would treat you as a cardiac patient and give you tests ASAP so they wouldn't be sued for malpractice.

Whatever you decide, hang in there and good luck.

Link to comment
Share on other sites

I don't know how things work where you are, but here, if you want to see a specialist, and it is urgent, you can often do so by going through the ER. In fact, that's the ONLY way to get certain things down quickly. I have learned this the hard way-- if I wait to call the doc's office, and they send me for tests and to a specialist it can take months here too. But, if you show up at the er,and say you have CHEST PAIN, and all the symptoms you describe, at least where I live, they would keep you overnight, and get you a consultation with a specialist as an inpatient.

Late October, like you, I was having chest pain, lightheadedness, and shortness of breath while walking. Because it was on exertion, they were concerned it was a blocked artery in my heart, so they kept me until they could get a stress test done. Same thing in May, I had one-sided weakness, and they kept me to rule out stroke, I was seen by a neurologist the next day and had an immediate cat scan, MRI and MRA.

Given that your symptoms could be many things, even if it is POTS, no American hospital would let you go home.

One caveat, it's only been in the last year that they've been keeping me. It could be that now that I"m older (39?), they're less confident I'm just a young, neurotic woman. The fact that I also have eds makes them nervous too.

Thank you for your answer, Mkoven.

Yes, things works this way here too. If it is urgent and I call the doc?s office, I am send to the specialist in a several months... Going through the ER can be quicker... But, sometimes it is useless too.

I had similar symptoms in August 2005, though on that time my dizziness was not so strong. We went to the ER, because we were even afraid that it could be related with the heart... They made an x-ray, checked my pulse and blood pression and carried out a blood test.

For the specialist the X-ray showed perycarditis... But they send me back home after an antiinflammatory injection and a treatment.

I started feeling worse, so we had to return to the ER.

After the same tests (except for the X-ray which I took with me) as on the first day, the specialist saw the X-ray and said the first diagnosis was wrong as he did not see any perycarditis at all...

I got another injection and he said he had no idea of what I was having and suggested going back home...

Thanks God the treatment did a lot and after a month I felt much better. I am still taking the antiinflammatory (1/day) since then...

:(

That?s more than a year ago.

:P

Link to comment
Share on other sites

Thank you all for your support and good words.

I really appreciate your help.

Futurehope: I think they do not care about lawsuits here, because we were not lucky today.

I had been writing all the information down for my GP, yesterday, and we went today full of faith hoping for the perfect answer (though my husband was not sure we would get it... And he was right).

:P

At the GP:

As he started telling me my blood test results, I started telling him my symptoms during the blood test because I was dizzy,...

He did not listen to all I had to say, laughed and added that it is something common depending on the nurse doing the blood test.

:(

I could not say a word...

He said that my reaction was quite normal taking into account that I had been fasting for the test and could, possibly, have been a little nervous about it. He only admitted that I could have a low blood pressure, but nothing serious. And recommended to drink Gatorade or prepare some salty drink myself...

"It is just as what you mentioned the other day", he added, "about your syncopes, feeling dizzy and with shortness of breath. That is nothing serious to worry about".

I tried to talk about it and answered that I was feeling quite bad with shortness of breath, chest pain and dizziness...

"Take it easy", he answered "drink a lot of fluids and eat salt, your blood tests are perfect. There is nothing to worry about".

My husband and me looked at echoder and decided not giving him the notes and brochure. It would have been a waste of time. I am sure he could have reacted as if we were trying to say we know more than he does (although it is true), besides being my GP he is the Manager of the Clinic and we do not want him to become angry...

Do I have to say I felt miserable when we left?

:lol:

In the meantime, my husband has contacted a friend we have in another Clinic. She is a nurse working at the ER. We did not wanted to ask her for any favour, but as we were worried about me, we send her all my symptoms by e-mail the other day and she has promised to ask around and tell me if there is someone specialized in POTS where she is working.

She also mentioned that she will help us in through the ER... But first, she needs to find out if there is someone knowing about POTS there.

I hope there is...

BTW, my blood tests showed no anemia (though you mentioned it can be negative even though having anemia). My Prothrombine time is above normal values and the International Normalized Ratio is below normal values... (My GP said it was probably due to the minimum dosis of "aspirin" I am taking, but :lol: as he has been so helpful and accurated... we are worried if this can be important...)

Furthermore, my Uric Acid is still below normal values...

Thanks for caring,

Love,

Tessa

Link to comment
Share on other sites

It's so frustrating not to feel heard at the doctor's office. I agree that you should be seen by someone with knowledge of POTS.

If they have done the standard tests to rule out heart damage, and those tests are normal, that is still a very good thing. Even though I'm very frustrated by the mysteriousness of my symptoms, I certainly don't want to be told that I've had a heart attack, have blocked arteries, or bad valves. I'm still looking for good treatment, but it is still very good to know that my symptoms are not life threatening.

Link to comment
Share on other sites

hi tessa -

i don't think i've had the chance to welcome you yet (so, welcome...i'm glad you found the forum) but have been reading your posts. i'm sorry that you've been feeling so poorly; many can certainly relate.

i am sorry that your appointment today was disappointing & do encourage you perservere in finding the best care possible and the answers you need; having a doctor that you're comfortable with is definitely important and often easier said than done.

but i also wanted to let you know that some of the things your physician mentioned to you are in fact grounded in research studies on POTS and/or other autonomic dysfunctions and may in fact help you to feel better. specifially i'm referring to increasing fluids & salt. this helps many people - either alone or in combination with medications - so even though this may sound simple you may want to give it a try. both salt & fluids are included in the "what helps" section of the website as well (as well as many other things, medications & otherwise). the link is http://www.dinet.org/what_helps.htm .

hang in there,

:P melissa

Link to comment
Share on other sites

Hello Tessa , are in in the UK or USA as I cant quite make out which .

I to get these awful chest pains, shortness of breath , dizziness and look like death warmed up to . So many times I've been rushed into the A & E been stuck on the heart machines which have registered 40 ...39 ...38 ...37 ...36 ... alarms going off left , right and centre , my oxygen is 95% or less ( normally less) and I'm grey and clammy.

And what do they do ????? :P other than dosing me with GTN and morphine ( to shut me up husband says's :( ) other than this they turn the machines OFF so they dont disturb the other patients :lol: never mind if my heart stops :lol: my husband gets furious when they do this and my own GP goes white with anger when I tell her they have done it again .

We have NO faith in our local NHS here in Plymouth and my husband is still hoping to bring me to the USA for help , the USA is far ahead of the POTS stuff then the UK is .

So................DONT YOU GIVE IN OR GIVE UP telling your doctors/consultants or who ever you see about your chest problems. I got fed up in the end of trying to get it through to them I needed help and one day my heart stopped , my 10 stone Newfoundland dog started it again by jumping on me ...........my 7 year old son sat and watched me turn blue on the floor and didnt know what to do , if it hadn't been for B.C. my wonderful dog trying to get me up and licking me , pawing me then eventually jumping on me I wouldnt be here now .

According to my own doctor and the man who first diagnosed my POTS I need a pace maker , but my local NHS will not give me one as they have said so far ;

I'm to Young ( that was 20 years ago now)

It costs to much( lies as you can get an external one thats cheap )

I dont need one yet ( no comment )

Having had heart failure twice , my heart stop twice , pericarditis and as I have a hole in my heart a two leaky valves , plus this dam low heart beat ( 50 daytime normal / 40 and below nigh times) you'd have thought by now they would have eased my suffering ............if I was an animal they would have done it years ago ( my vet did offer but we declined the doggy one :D )

So, I'm up tonight becuase I cannot sleep ,chest pain, sweating and dizziness again ( I also yawn so much day and night-times ) my own GP is pulling her hair out trying to get this sorted for me .

You stick to it girl , get your doctor on your side , write down in a book all your episodes , how long , what pain level etc and ..............get your husband to take photo's of you at your worst , I know that sounds mercarb , but I recently went to see another specialist , well his junior , he looked at a photo my husband had taken of me ' with ; chest pains/ headache/ dizziness/ shortness of breath.............and called in the registrar ....who called in the consultant ..............who couldnt believe his eye's . IT WORKED , but still no pace maker YET.

Willows..................hey, I've been hanging around some 35 + years with this horrible ,nasty and somewhat frightening stuff going on inside of me , and I'm still here as silly as ever , and laughing well .............so you hang on in there girl , if you want a natter at anytime email me , I'm thinking of you and holding you close to my heart to give you strength ........... trouble is you keep slipping out through the holes :( XXXXXX

Link to comment
Share on other sites

It's so frustrating not to feel heard at the doctor's office. I agree that you should be seen by someone with knowledge of POTS.

If they have done the standard tests to rule out heart damage, and those tests are normal, that is still a very good thing. Even though I'm very frustrated by the mysteriousness of my symptoms, I certainly don't want to be told that I've had a heart attack, have blocked arteries, or bad valves. I'm still looking for good treatment, but it is still very good to know that my symptoms are not life threatening.

Thank you, Mkoven.

Yes, that was very frustrating...

I went to a private Cardiologist last year and had an ecocardiogram done. He said there is no heart damage.

Therefore it is supposed that my symptoms are not life threatening too... I think it is part of POTS.

Link to comment
Share on other sites

Hi Melissa :) and thank you for your support.

I read the "stories" on the web and I admit most are worse than mine... :) and they still keep the faith...

I was really astonished when I found Potsplace for the first time, as most of the symptoms match with what I am going through. The website was the answer to a whole life of questions and worries.

I read it to my husband and he was really impressed. We decided to, at least, follow the "what helps and what to avoid" (as I was not going to take note of the drugs, because I do not want to take them without a doctor?s advice).

The only medicine I am taking is the antiinflammatory (kind of aspirin), prescribed a year ago.

I agree that it is very important to increase fluids and salt. In fact, I drink a lot of water... In relation with salt, do you mean I should use more salt than usual when cooking? Wouldn?t that be dangerous for the heart?

I am glad I found the forum. You are most helpful.

I am still dizzy and cannot walk a long distance (shortness of breath and chest pain start), but I am feeling slightly better than I was on the weekend...

We will continue trying to find someone who can help in relation with POTS.

I?ll keep you updated.

Love,

Tessa

Link to comment
Share on other sites

Hi Willows, thank you for caring... :)

I am living in Spain, the South of Spain known as the Costa del Sol.

I am sorry that you get these symptoms too, mine are similar to yours.

The day I had an endoscopy done, they injected a light sedation... Then they tried to find my pulse putting a finger-tip pulse meter on my finger. They tried all my fingers, but could not find it! (even those on my feet)

Finally they put it on my ear. :P I thought it was funny... (Just ignorance).

I was supposed to only be calm and help them with the endoscopy but felt asleep.

Nurses and doctors were worried because it took a long time until I finally awoke.

I never thought It could have been hypotension and a reaction to the drug because of having POTS.

:) but after reading Pots Place, I understood many things of my health...

You mention that your heart goes down as well as your oxygen level... Might have been what happened to me that day, as well as another day that I got an injection of Novocaine... I had an awful chest pain, shortness of breath, dizziness and fainted. By blood pressure seemed to rush down...

It is when I am standing or walking that my heart beats too fast... (the other way)...

BTW, I feel it is a shame that they turn the machines OFF when you are going through such a nightmare! :o

I totally agree with your husband to be furious. Mine would be too.

I hope you can get your pace maker. (I?ll cross my fingers)

I lost my faith too in my local GP... I would love going to the USA for help and I support your idea of going. If you can, do it.

I am still looking for someone who really cares and knows about POTS. I will not give up... What else can I do feeling ill? I do not think I can continue without a special treatment...

I?ll tell my husband about the pictures... Sounds strange. :) But they could be of some help.

Thank you,

Take care

Love,

Tessa

Link to comment
Share on other sites

tessa -

it's great that you (and your husband) already have had a chance to look around so much of the site. and i'm once again reminded that one of these days i should add my story to the collection...ah well.

regarding salt, increasing salt intake - either by adding salt to what you are already eating or by taking salt tablets - is recommended to most with autonomic dysfunctions as it can help to increase blood volume &/or blood pressure. essentially it will help your body to retain some of the extra fluids you are drinking, which is the intended effect. it isn't right for everyone, i.e. those with especially high blood pressure, but it sounds like your pressures tend to be low. and i doubt that your doctor would have recommended the increase in salt if it wasn't safe for you and your heart; it sounds like that while you still don't have all the answers you want & deserve, you have had the testing done to rule out major heart problems wherein salt would be dangerous.

while you can increase it in food you cook, it might be better to add it afterward if others (i.e. your husband) are sharing in the food b/c it may not be healthy for others to have the added salt. it also may take some adjusting in your taste if you're not used to it - i know it did for me - but many years back (when i wasn't as ill) it really helped me and has helped others to varying degrees as well. and i still feel much worse if i get dehydrated or low on electrolytes (salt, potassium, etc.) many also do well with electrolyte replacement drinks such as gatorade.

hope this helps,

:) melissa

Link to comment
Share on other sites

Hi Melissa,

Your information is most helpful. :)

I love the website. Since the day I found it, I have been reading it carefully...

With regard to the salt intake, thank you for the information. You are right. Heart problems have been ruled out, I tend to have a low blood pressure and, though drinking plenty of water, I feel very dizzy the whole day... Furthermore, I would say I have hypovolemia: I have to add salt to my diet.

We share food (my husband and me), so I will have to add it afterwards to mine.

Take care,

Love,

Tessa

Link to comment
Share on other sites

In terms of salt, I think if you're blood pressure isn't high, and you don't have congestive heart failure, salt isn't bad for you. I've been adding lots of salt to my food, drinking lots of tomato juice that already has salt, drinking chicken broth that's salty, etc. My blood pressure is rarely higher than normal and usually very low, so I've been told this is safe. I tell my friends that I'm the only woman I know who is trying to RETAIN water and bloat on purpose!

I do notice that if I'm even a little dehydrated or overheated, my symptoms are a lot worse. the only problem with all the fluid and salt is that I have to pee constantly! (And annoyingly, I frequently come close to fainting while peeing--sorry for the detail...)

Link to comment
Share on other sites

I can imagine, Mkoven :)

Well, in fact I cannot retain water... Even though I drink a lot...

BTW, I noticed that since two weeks ago, I have been eating a lot of tomato with anchovies, as well as other food with extra salt on it... Surely my body claims more salt.

My blood pressure is usually very low too.

Many days, I feel so tired around 9 or 10 pm. Sometimes I am sleeping wathing Tv.

Thanks for caring,

Love,

Tessa

Not sure if you've tried it, but if my chest is really bad a really hot shower can sometimes help me. The steam seems to alleviate the pain. Make sure you can sit down in the shower though- I have a handy seat.

Thank you, Persephone.

I usually "run away" from the shower as it makes me feel tired and dizzy, but you could be right. I never thought the steam could alleviate the chest discomfort... But thinking about it: I think l will have to try...

Love,

Tessa

Link to comment
Share on other sites

Hi Tessa, yes the photo's do sound rather strange , but for me it worked wonders.

Only my own local doctor who lives about 5 miles away from me has ever really seem me looking like 'death warmed up ' ............. :)

So when I had such a bad attack one day and my husband and son actually thought I may not make it though this one , my husband took a picture of me propped up on the edge of the bed ..........I took this one with me , and the reactions I got were incredible :) the hospital doctor I first saw said it wasn't me , it must be my mother !!!! But then he saw the scar over my right eye brow ...............and he went pink !

The actual consultant said I looked like I'd aged by 20 years on the photo , because I wasn't just white , but grey, yellow and so lined , he was so shocked and as he said to me ' This is brilliant , as we never get to see our patients at there worse unless they are brought in on a 999 ( 991 in USA) so seeing what you are like on an ordinary day really brings it home and makes my diagnoses a bit easier '

If I can when my hubby gets up ( its now 3.30 am in the morning here) I will ask him to stick a before and the OMG photo of me on my photo page I have and give you the link to it , this way you will see what I mean by 'what a difference '

I'll email you when I've done this OK .

Well look after yourself and dont over do it as Christmas is on its way ...........Say's she who keeps ending up in bed because she's done to much again :( Willows.

Link to comment
Share on other sites

hello Tessa, sorry I haven't been back before now but I've been stuck o bed for a couple of days again, just on my feet again now but today is not looking good either , so I think I may have to go back to bed again shortly as I'm dripping , short breathed , and feeling rather sick :rolleyes:

Never mind here's the link to the two photo's.

The head and shoulders one of me is how I look ( close up ) normally ....you'd think nothing was wrong with me !

The next one , well now you know why the doctors thought it was my mother and not me , and why they decided to do something , not my best photo ever but it did work ....................click here to see, ignore all the rest of the stuff as its to do with the 'brother coming for christmas post ', the wedding post and Halloween post !

http://s75.photobucket.com/albums/i318/ban...p;addtype=local

Link to comment
Share on other sites

oooops nearly posted the same one twice !

Link to comment
Share on other sites

Yes, I see what you mean... Willows

Good that they were able to see you that way...

Thank you for posting,

I am also feeling sick, I have a terrible headache, nauseas and my eyes cannot stand the light. I think I will have to turn off the light and go to bed...

Take care,

Love,

Tessa

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...