Tessa

I cannot stand too hot temperatures and too cold ones. If the room is too hot I start feeling dizzy and it can trigger more symptoms... If it is too cold, I feel breathless and painful... Yes, it is difficult to adapt to temperatures... Love, Tessa

I cannot give any suggestion as I only had my appendix removed, but that was long ago and it was even not needed... But, that?s another story. I hope you recover soon from the surgery and everything goes well. Will be thinking of you. Take care, Love, Tessa

I noticed that when I am hungry, I am looking forward to eating something salty, anchovies, olives, salty almonds... And I add more salt to my food... I also drink something similar to Gatorade (Aquarius)... (I have a low blood pressure. The other day, at the chemist, when they checked my blood pressure, they wondered how I could keep standing ) Love, Tessa

Besides being gluten and casein intolerant (a problem with my diet and drinks), alcoholic beverages have always made me feel worse and I mean really worse. I can start feeling the symptoms while drinking or the following day, but it is usually headache, nauseas, vomits, fatigue, etc. I do not need to drink a lot to feel so sick, headache starts a few minutes after starting an alcoholic beverage... I just thought, why do I have to drink something I do not like and makes me feel sick? As I feel so bad when I drink, I gave it up long ago. Love, Tessa

Oh, yes, very unpredictable too. and my eyes burn and get red many times... Take care, Love Tessa

The number of doctors I have seen for my health problems is a shame. I lost the count! I have been from one to another. Sometimes I gave up, others I tried again... But most of the times, it has been very difficult to reach someone who really wants to help and knows what he/she is doing. Regarding POTS, I still have not found a cardiologist. I have dx myself with POTS after a long investigation on the Net and thanks to DINET (thank you for this website and forum!). I am waiting for an appt. with another cardiologist, though who knows if he will be able to help? Not many deal with POTS, they haven?t even listened the word POTS. They studied that fainting = vasovagal syncope, nothing to worry about, nothing serious that fades out when you are older and that you can avoid by drinking plenty of water and avoiding getting up too quick... The new information regarding POTS, dysautonomia, etc. is unkown for them. But I still have faith and I am looking forward to my appt. Take care, Love, Tessa

Congratulations!!!! Regarding the fear of public speaking, I would suggest the following: When you are talking in fron of the class, imagine you are talking only to one person, the person of your choice, a friend or relative... Wonderful news! Love, Tessa

I suspect I suffer from Hypovolemia, imagine what happens to me then. My menstruation usually lasts for around 1 week, it is painful and I have many blood clots. Of course, I do feel weak and dizzy. Even lightheaded and sometimes with nauseas and hungry. I always have to eat more (sweets and salty food) plus drink plenty of water before, during and after it. Try to have a relaxed menstruation, rest more and do not eat fatty food. Avoid what triggers yours symptoms. That?s what I do. Take care, Love, Tessa

Hi Masumeh You are right, one should be wary of doctors who prescribe medication without a diagnosis. I have no diagnosis yet. No TTT test done. EKG and ECG are perfect. My pulse was too high and my Blood pressure low. I have most of the symptoms of POTS and talking with the cardiologist about it and after he checked my pulse, he decided to prescribe the beta blocker meanwhile I get a cardiologist who knows more about POTS. It is the first time in more than a year that I am starting feeling better, thanks to the beta blocker my pulse has gone down to 60 bmp. Even though, I know I have to be off medication when doing all the tests. Thank you for mentioning it. I think it is important to point it out, because many doctors say there is no reason to stop medication, but it is not true I did not know years ago and I am sure it can help others. Although I have been lucky with the doctor?s prescription, I have to admit that there were many chances of an error and would like to recommend people to be sure of what they take... Getting a diagnosis is very important... I am still looking for a cardiologist, where I live, who knows about POTS ... I just hope to find one soon. Love, Tessa

I am taking a different Beta Blocker: Atenolol. 12,5 mg in the morning and 12,5 mg in the evening My pulse is perfect since I?ve started with it (around 60 or 65 bpm). My blood pressure has always been low and as it seems lower sometimes, I just try to add more salt to my diet and drink plenty of water or Aquarius (Gatorade). Tessa

I have a sore throat. No idea if it has been caused by an allergic reaction to Bisoprolol or if it just a cold, but I am taking Atenolol and my pulse is really much better than without the beta blocker.

I am happy you had such an excellent success, Julie! I hope you will get to the right treatment to feel better soon. Take care, Love Tessa BTW: would you be so kind sending me Dr. Rowe?s article using the pm (messages)? Thank you.

I suffer the same... Love, Tessa

Hi As I mentioned a few days ago, I started taking Atenolol and I was feeling much better. The problem was that the cardiologist (yes, the one we talked about previously and who we do not trust) mentioned that Atenolol had many side effects because it affected other organs. He then prescribed Bisoprolol (2,5 mg. in the morning and 2,5 mg. in the evening). I did not trust him but I asked at the Chemist about it and they confirmed that Bisoprolol is a specific medicine for the heart. They said I was taking a very low dosis of Atenolol and that I could perfectly change from one to the other. Yesterday, in the evening I took my first 2,5 mg. of Bisoprolol. I woke up with a heavy headache, nauseas, nights sweats, pain in the nape of my neck and on both right side and left side of my neck. I was feeling as if both sides of my neck had swollen and I could feel my pulse in the neck (not fast but strong). I tried to call my husband to ask for help, but was unable to talk loud and I had to wait... Finally, at around 8.30 am I started feeling slightly better. My headache was fading away, though not the pain on both sides of the neck and the feeling that it was swollen. My husband woke up and I told him what was wrong with me. I drank 1/2 glass of water (I needed water after the sweats)... I was extremely hungry and had a good breakfast. I took Atenolol (instead) + the antiinflammatory (Inyesprin) I use to take. I was feeling tired and had to sleep for a couple of hours. When I woke up, I was feeling better, though I felt pain in my throat. I looked in the mirror and it seemed to me that the front of my neck was a little swollen. But my husband said he did not see it swollen. I bet it is just a feeling. By the end of today, my throat hurts, it is painful to talk and to swallow. I wonder if I had a bad reaction to Bisoprolol. What do you think? Thank you for your answers, Love, Tessa

Good luck Julie. I hope you can find what you are looking for. I agree, the TTT is the best way. Please, keep us updated. Take care, Love, Tessa

Thanks for sharing! I love it! Excellent way to promote information on POTS. Love, Tessa

Hi, I am taking ATENOLOL 25 mg/day (1/2 in the morning and 1/2 in the evening) I am sure that we do not react to all meds in the same way. I do not feel sleepy while taking it, at least for now, I started with ATENOLOL a few days ago, so I do not think I am the perfect person to talk about it. I agree with your doctor. Make your decision based on how you feel. Who can know better how you feel? You might get more useful answers than mine: I hope. Take care, Love, Tessa (I do not take an increased dose when needed)

Thank you all for your answers. I was really feeling so bad. It is terrible when you have hope and they break it apart. Though I feel better with your support. We are paying our Health Cover but this specific doctor was not included on our Health Insurance. As we thought he was the one who knew about POTS and as we were told he would not charge a lot, we agreed going to him... But besides being useless, the fee was nothing to do with our expectations and we had to pay a lot for his tests and meeting. I really cannot afford doing any more tests with him. Furthermore, I do not trust him. I prefer doing the tilt table test with someone who knows about POTS and, if possible, included on my Health Care System. I wish I knew a knowledgeable doctor, Rachel, but have not been able to find one yet. I hope we find him soon. You and those who have suggested it are right, Nina, I need someone else. I will call on Monday to cancel any further tests with him. Sophia3, at our Health Care System, we talked with a cardio-surgeon who recommended him saying he would be able to help with POTS. Babs you mention: Lastly, did you ask your pcp if you should change beta-blockers, when it's obvious this doctor didn't take everything into considreation? I'd be very, very skeptical of changing meds that have helped you........ but, that's just my opinion.............and just like rear ends, everyone has one What do you mean with pcp? I am also skeptical about changing meds as ATENOLOL has helped me... but, I feel unsure because he said that ATENOLOL could cause problems to other organs and BISOPROLOL not. Up to now, I do not have anyone to ask about this until I can find a cardiologist who knows about POTS. Yes, Ernie, I prefer doing the TTT with a more competent doctor. I do not want to imagine myself doing this test, having a syncope or whatever and not trusting the doctor... Thank you all for your kind answers. Hughs to all, Take care, Love, Tessa

Welcome home! I am so happy that you are out of the Hospital. Have a nice rest in your own bed and come post back as soon as you can. Take your time to recover. Love, Tessa

Thank you for the updates, Emily I am glad that Melissa is feeling much better and hope she can be home soon... She is on my prayers and thoughts Love, Tessa

I am sorry, Ernie I hope this day passes by quickly Love, Tessa

I imagine it happened to you a thousand times... But it so frustrating and I feel so disappointed! We went to see the cardiologist today (the new cardiologist who was said to know about POTS). I tried to show him POTS brochure, as well as the translation for him, but he just gave a quick look to it and asked me for the symptoms, leaving the information on the desk without any further interest. I started telling him about most of my symptoms, at least the most important ones (because, as you know, we have a lot). We told him I had seen a friend of him (the cardio-surgeon) who said I had a fast pulse and after knowing my symptoms had prescribed ATENOLOL (a beta blocker). My pulse has gone down since then and I now have 60 bpm (which is incredible Around 50% less that I had before). Though I still have all the other symptoms. We told him I had an electro done last week at the ER and that it was Ok. He took my blood pressure: 10/6 He insisted doing another Electro + a cardio-echography (I had it done not long ago)... Then he said the following: Your heart is perfect and healthy (which we knew). We do not have POTS under diseases... (I think he was trying to say that he did not know about POTS). It is called a vasovagal syncope. Nothing serious and not related with the heart. It is just that you cannot stand up quickly or cannot keep standing and faint. It is easy to avoid by following some simple procedures. Just avoid getting up to quickly and those situations you know that cause the faintings, drink around 3 litres of water a day and with a beta blocker, you will be ok. What???? He added: You will have to have a 24 H Holter to check your pulse and we can carry a Tilt Table Test, though this last one is just to confirm your symptoms for you to be sure what you are feeling when it happens... Then he said that a vasovagal syncope generally goes away when the person becomes older and that it is a question of time... We insisted on what we had already mentioned: that I do not faint since many years ago (I think last time was in 1997), mentioning that I am feeling worse over the years and not better! I told him that I cannot stand, I cannot do my housework... And that my pulse is better with the beta blocker but not ALL the other symptoms! He just said "Ugh". He also said I should remove ATENOLOL because it had too many side effects and said to take: BISOPROLOL instead (2,5 mg. twice a day). My husband and me feel betrayed, frustrated, disappointed... Sad, hopeless... Of course we have noticed that he has no idea about POTS. I think he does not even know that POTS exists. On the other hand, I do not know if I can trust him in relation with changing a beta blocker for another one. Even after telling him my pulse has finally gone down thanks to it I have read that BISOPROLOL should not be taken by someone who has a low blood pressure. (and I have. In fact, we told him I have)... Furthermore, why doing a tilt table test with him, after admitting that he only wants to do this test in order to show me my symptoms? Please, say something. I really need to read your comments about all this... I apologize for my long post, but I needed to share my feelings with you. Thank you for reading and for your answers, I really need them. Love, Tessa

It seems I had symptoms since I was born as I refused to be breast-feeded and they had to give me a special milk. (now I know that I am gluten and casein intolerant). I started fainting when I was a child, but never knew why. I have always been a "difficult" person. Some food made me feel sick, could not carry out some sports, because I started feeling really sick and other symptoms... I noticed the tachycardia a few years ago. I cannot exercise since 10 or 11 years ago. I am sure I have POTS, not diagnosed yet, but hope to be on the way to it.

Thank you both for your answers, you have been most helpful. I started with my first dosis of Atenolol last night (1/4 of 50 mg) and another 1/4 this morning. My pulse has gone down and I do not think that my blood pressure has, which is good. Even though, I still felt some chest discomfort this morning while doing some shoppings... I have not had much time to see if things have gone much better, but we will see when cooking, doing the homework, etc. I cannot imagine that this pill will stop all the symptoms... Will see what happens when we meet with the cardiologist. Jacquie, it seems he thought I have a heart arrhythmia too, as my pulse was too fast (while sitting) and he said I had to take Atenolol until my visit with the cardiologist... I also think I have POTS. Similar to what happened to you. I do not think that Atenolol will be the only thing prescribed for my POTS, don?t you? Love, Tessa

Hi Some good news. Looking for a cardiologist who knows about POTS, I have contacted with a surgean (cardiologist) who treated a relative some months ago. Even though he was on duty and assisting his patients (Hospital) - we had no appointment - he was so kind to meet with us (my husband and me) in a private room. I showed him POTS brochure + a translation into Spanish and talked about some of my symptoms. He said he knew about POTS, though he is not a specialist of it (he is a surgeon). Then he said he knew a very good friend, cardiologist, who can diagnose and treat POTS... Only about 10 km. from our home! He said I will have to go through some tests: * Holter * Tilt Table * ECG and maybe an electrophysiologic test... but that, he said, would be one of the last resources... He mentioned that sometimes a pacemaker is needed, though he insisted that this could not my need. Even though, he offered himself for the surgery if it was suggested by his friend. (How nice) Adding it was very important to get a diagnosis. Then he took my pulse (we were sitting) and said it was too fast for being at rest. He asked me if I have a low blood pressure and the medicines I was taking and... Meanwhile we get an appointment with the specialist, he prescribed ATENOLOL 25 mg. (1/2 in the morning and 1/2 in the evening), stating that as it causes a low blood pressure, which I have, I should take it the way he has specified... This is the first time in my life that a cardiologist really cares about my health and admits it can be POTS, as without any diagnosis, he has prescribed that kind of medicine. I am so happy! We are so happy! There is hope! I wanted to share it with you, because I know you were worried about my health and this would have never happened if I had not found POTS place and DINET?s forum! I would not have any idea about POTS without your help my dear friends. We have to call on Monday morning for the appointment. I am looking forward to it! (even though I am a little scared about the tilt test... I am aware there is a high possibility to faint... ). Regarding ATENOLOL, I just wanted to know your experience with this drug. As I have not been diagnosed yet and I do have a low blood pressure, do you think I should check my blood pressure from time to time? Please, tell me something. How do you do with it? Thank you for reading, Take care, Love, Tessa