Tessa

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 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

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

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. 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! 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

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

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.

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). 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? 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 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

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.

Thank you Mom4cem It is so important for me to read your support and help. 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.

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

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... 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... 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.)

During my exercise stress test, I could not walk fast on the treadmill. The cardiologist tried to make me run and... Not many minutes later, I started looking down, unable to look up. I was trying to concentrate on my legs and feets, who seemed to weight a lot, while I had to be experiencing some brain fog, as I did not notice that I was unable to assimilate what the doctor was saying. Nurse and cardiologist suggested to stop, but I wanted to continue, though it was obvious that it was impossible for me to fulfil the test. When I sat down, I felt dizzy, exhausted, lightheaded and I was starting to feel some chest pain and lack of breath. I also started hyperventilation... But I had not stopped the medicines for the exercise stress test, (because they told me not to do so, even though I was sure it would change the results, as I cannot walk if I do not take them). Of course, it takes hours for me to recover from any kind of exercise. I feel exhausted, dizzy, thirsty, sometimes hungry or with nauseas and cannot concentrate my mind... The results of the exercise stress test Exercise Intolerant.

I am always trying to avoid the shower... Because I do not feel good while having the shower, neither after it. I never knew why I was acting that way and I had been thinking I was too lazy... Then I noticed that I was feeling exhausted after the shower and dizzy. One day, I had to lay down for about 1 hour after it... And I realized it was not because of beeing lazy, but because something was wrong with my health... Another symptom to add... Thank you for mentioning the shower chair, I think I will have to buy one. I do not want to feel so bad everytime I need a shower and so extremely tired after it.

Hi First of all, I apologize for not being able to give what you expect from our answers, but I could not resist writing to you, at least to give you my support. I am very sorry for you sufferings and hope you can find the best help to recover as soon as possible. On the other hand, I hope you do not mind telling you my own experience. It might be of some help. I suspect that I have POTS but I have no diagnosis yet. In August 2005, I started having chest discomfort/pain, shortness of breath, dizzyness, lightheaded... No matter if I was standing or sitting. Laying down, sometimes made me feel worse (especially on my back or left side). I had to put 2 pillows to sleep. When walking or standing for a while and walking around the grocery store the pain was going worse. My X-Ray showed "Pericarditis" and the EKG was Ok. I started taking meds for the diagnosis and felt better, though when finishing, it started again. My GP recommended to continue with one of the drugs: Inyesprin Oral Forte. (similar to an Aspirin, but also antiinflammatory). Since then, I am feeling better, though I am still feeling bad, at least, I can go to the grocery, etc. Sometimes, I also feel my pulse banging in my neck, head and chest. And I always feel like someone is squeezing both sides of my throat everytime I bend forward, collect something from the floor (bending), etc. Sometimes, the pain becomes unbearable, even when laying down. But I have some relief when taking the antiinflammatory. (By the way, thyroid tests were ok). I also suffered from syncopes. Now only pre-syncopes. I really do not rule out dysautonomia and POTS. I am 90% sure that I have POTS. Have you checked the DINET website: what helps and what to avoid? Have your read DINET website STORIES? Some are similar, some are not... I am looking for someone specialized in POTS and dysautonomia. You should go to someone specialized too and reject doctors who do not help. You mentioned: But , I do on the other hand have some odd symptoms that some people with dysautonomia have. Strange symptoms like- before I feel faint, I get very flushed and shaky- instant fatique. Its hard to explain but feels like I am very hungry or thirsty. It also makes my chest , hands and arms burning hot. (usually they are very cold) I also have stomach pain, constipation, my face sometimes feels hot and almost sunburned. The other night I could sleep because my arms felt numb, like they were falling asleep. I have heart palps. shortness of breath during dizzy episodes. I also have some of the symptoms you mention. What is very important: do not feel anxious, try to rest what you feel you need and look for help. You have friends on the forum who care for you. You are not alone. Take your time to find the best person to help you. And I am sure that some more members on the forum will answer and support you, even with some more helpful information than mine. Take care, Love, Tessa

Thank you for the information, Ernie Take care, Love, Tessa

I've had periods where I couldn't work and during some or most of them I had to stay home, in bed or Hospital and periods like now, when I can... But I need some rest from time to time and I?ve had days that when arriving home from work I have stayed in bed for hours before feeling better. Furthermore, my housework and bathing are a nightmare. Unable to cope with it. I cannot dance, play, sing ...

Interesting post I thought I was the only one having these flashes! Never knew why it happened... And yes, I also thought about wearing sunglasses while I am sleeping. Tessa

Hi Michele I really cannot understand that you can get short of breath while standing or walking but can bike... Though I am sure there must be a reason for it. In my personal experience I can tell you that I get short of breath and chest pain while standing for a while, walking, dancing, doing my homework, etc. I?ve had a stress test: the result was intolerant to exercise. I was unable to follow the test, weakness, brain fog... By the way, when my chest pain becomes worse and I get short of breath, sometimes I cough (but not much). Take care, Tessa

I hope you are feeling much better now. Have a good rest and recover soon, Take care, Love, Tessa

Hi futurehope Thank you for your answer. I will have the blood test results on November the 20th. I had another blood test done in September 2005, when my chest pain was even worse and they said that the test was ok. The only unusual fact (but they said that was not important) was that my Uric Acid was 1.0 mg/dL and normal values fall between 3.0 and 7.0 mg/dL. My GP joked about it and said I could eat a lot of meat... Though now I wonder if that can be related with POTS Though the blood test did not show anemia, as I am not gaining weight, feel tired and because of all the rest of symtoms, doctors thought I could benefit taking a multi-vitamin complex (Resource Complex). That?s already for 1 1/2 year. I am looking forward to seeing the last blood test results and will keep you updated. Take care, Tessa

Thank you for the information, Ernie. If it ends up that I have hypovolemia, is there a way to avoid feeling so bad when having a blood test done?

Thank you for answering. It was first going to be a routine blood test, but because of all my "health problems" (which I suspect have to be caused by POTS), my GP thought it could be a good idea to check some other things too, such as Rheumatoid arthritis, ANA, etc. I am not quite sure of all the tests they will carry out with the blood samples. I will have the results by the end of the month. Do you mean that even having hypovolemia, the blood test can show normal? How will they know? Tessa,

Hi I had 5 tubes of blood taken the other day, and for the last 2 tubes the nurse was unable to get more blood out of my vein. I had to help her by opening and closing my hand strongly (this happens usually when I have a blood test done) ... I started feeling dizzy and with brain fog. They helped me to lay down for about 10 minutes. As I felt much better (I always do when I am sitting or laying down), I went back to work. The situation got worse. While sitting, my pulse elevated, I felt dizzy and thirsty, had nauseas and difficulties to concentrate (brain fog), chest pain/discomfort and shortness of breath, infrequent urination (even though I started drinking a lot of water), weakness, cold hands and feet, shiverings... (I also felt I was going to pass out) It was scary and lasted for about 5 hours. Then I started feeling somewhat better. Do you think this could be caused by Hypovolemia? Do you have hypovolemia? Can you describe your symptoms? What should I do to determine if I have hypovolemia and what can I do if I need another blood test? Do you think I should have gone to a doctor when feeling so sick? Thanking you in advance for your answers, Regards, Tessa

I agree with you. I also suffer the same feeling and it is difficult to describe. I cannot dance, sing, talk loud... Going by train, plane, boat and even car can be a nightmare, because of feeling "seasick". And yes, sometimes it hits the next day... I remember an End of the Year family-party home. We danced till late. The following day, I was feeling seasick, with nauseas, headache and pain... I had to stay in bed for the whole day... But that was two years ago. Now it is even worse. It is so sad not being able to sing. Tessa

That?s interesting. I started my GF & DF diet in August 2005 and, although I had some POTS symptoms, I also got full blown POTS around September 2005. I also thought it was strange that I started feeling worse of POTS after starting my new diet. Furthermore, I also have Microscopic Colitis, which is an autoimmune disorder. If these disorders are potential triggers for POTS, what else can we do? By the way, my blood test was negative for celiac, as well as the endoscopy. Having these tests negative does not rule out the gluten intolerance. The tests at the Enterolab Laboratory (stool tests) were positive for gluten and casein intolerance. You do not need to eat gluten if you want to carry them out, but if you want to follow the testing for celiac (endoscopy) do not start the GF diet before. (But remember, a negative endoscopy result will not rule out if you have intolerance to gluten)... Take care, Tessa

I am so sorry, how do you feel now? I hope you are better. Just take it as a short holiday, try to rest, read a good book, watch Tv... Take care, Love, Tessa