Tessa

Sorry for your dx but glad that you found the forum and decided to join. Welcome! Tessa

Hi Amy Welcome back! I am glad that you were able to be home for Christmas and hope that you get a better health in 2008. Take care, Tessa

Hi Sophia3 As mentioned by Flop, I am taking Licorice Root. I was prescribed Florinef by my Cardiologist (well, in Spain it is named different), but refused taking it because I thought that being intolerant to casein I could not. The Cardiologist agreed to try Licorice Root instead. And so we did. (After talking with an Endocronoligist last week, I have been told that because that drug only contains lactose and not casein, I can take it... But that?s another story). From the first day of taking Licorice Root my chest discomfort/pain dissappeared and I felt less dizzy and lightheaded. Regarding my blood pressure, I am afraid I cannot give you an accurated answer, because of two things: 1. I am also taking a beta blocker which decreases blood pressure. Therefore it is very difficult to know if the Licorice Root is really doing something. Even though, the fact is that my blood pressure was pretty low before taking it and although still low now, it has not gone much lower. 2. Because symptoms started to re-appear/worsen again months later I convinced my GP to continue tests. I had read on DINET that POTS can be caused by adrenal problems and after investigating about it, became surprised how my symptoms matched with the ones mentioned to be: Adrenal Insufficiency. The test of the GP showed an extremely low aldosterone level. The second test to check cortisol, showed a low level (under normal values). It is therefore very likely that I have Adrenal Insufficiency. Maybe Addison. I am looking forward to some further tests to confirm it. This means that if I really have an adrenal problem, if I am not wrong nothing would have improved my health unless taking hydrocortisone and/or fludrocortisone... And up to this moment, I have no idea if Licorice Root is able to improve my health without the most suitable treatment to replace these hormones... You see, Licorice Root can help me to retain sodium and should increase my BP, but if I have Addison, what I really need is a drug to replace the hormones that my adrenal glands do not segregate (and therefore, fludrocortisone and hidrocortisone are needed)... It is very complicated, but I think you might understand what I mean as your sister has an adrenal problem. I am still learning a lot about all this. To summarize, as my experience can be doubtfull, I would rather recommend to rely on Dsdmom?s answer. Even though, I hope you do not mind if I insist that every person is different. Therefore, if you try, be patient. It is not easy to change our health from one day to another... Take care, Tessa

I am glad too that you caught it! Good start for 2008! I hope you are having a healthier new year. Take care, Tessa

Thank you, Amy Happy New Year to you too and to all the Members of the forum. You have been of great help throughout the year. My best wishes for 2008. May this new year bring a better health to all of you! Thank you for your support, for your help and for being my friend in 2007. Love, Tessa

Maxine, I am so sorry that you have to go through sad events but these have made you stronger. Yes, you are. And you are not alone. I wish I could do something to help you feel better, to remove all your symptoms, to make you healthy and happier... I can give you my support, my best wishes, my love... Venting is a good way and writing down your thoughts too. I know how difficult it is to cope with all this. We all have are own bad moments, feel alone, sick, frustrated.... (And a long list). I am not going to compare my experiences or others with yours, but the most important above all is to accept the things that we are going through. Do not feel angry, do not feel dissapointed. Can you remember the happy moments? Everytime you feel sad, change this feelings trying to remember the happy moments. Assure to yourself that better moments will come. I am not sure if I will be able to express exactly what I mean, but do not try to swim against the river, just do your best not to sink and the river will take you somewhere... We cannot avoid feeling ill and until we have the treatment, surgery or whatever is needed, things are this way. The possitive part of it is that these things come and go. There will be a better time. There is always a sunny day after a rainy one. I will send my best thoughts and prayings for you. Step by step, you will get better. Do not forget us. Keep telling us how you are going on, your feelings and thoughts. We are here to support you, too Maxine. Count on us when needed. Love, Tessa

Thank you Merry Christmas to you too and to all the readers and members. I hope you have a nice and healthy day, full of joy... Love, Tessa

I have noticed heart rate changes in the mornings too. Sometimes tachy others brady... It seems to be worse when I have been awakened in a sudden (for instance, by the alarm clock). Sometimes I feel a slight chest discomfort too or precordial pain. I feel lightheaded and move slowly, because I cannot think properly... After this I have breakfast and take my beta blocker and a few minutes later, it is over and I am feeling fine. Tessa

I agree, Mary. Cannot travel by boat and plane too. Even by train is difficult. Could be gravity, who knows? Because going by plane made me feel so sick, on the last time that I had to travel by plane, I was recommended to use a special "medicine" used to avoid dizziness when travelling... A few minutes after taking it I felt asleep. It was a strange sleep similar to when you pass out. I was completely unaware of what was going on around me. There was no way to awaken me. I slept the whole journey and only awakened by myself... When landing... (I think I am developing a hypersensitivity to some drugs)... Hi, Amy Stop-and-go action can make me feel very dizzy in a car, train... You are right, Amy, it is not as bad when I am driving too. It would be interesting to know if it is a blood pressure thing. Has it been checked by someone on the forum? Before knowing and because doctors had no idea why this was happening, I thought it was related with POTS but wondered if it was a Tessa?s special POTS symptom.... Well, at least now we know that we are not alone... Maybe this could be added to the symptoms page of DINET? Have a nice and safe Christmas Love, Tessa

Hi Mary I feel sorry for you having to go through all this... but I am glad that you shared your experience with us. It is the first time that I am able to read someone with a similar reaction to mine while driving... I knew it was related with POTS but I did not understand why it happened or what happened to make me feel that way... You see, when I am in a car, accelerating, stopping suddenly... And above all, if driving through hills... I feel extremely dizzy, sometimes even with chest discomfort or pain. (It gets irradiated to the left shoulder too - but on less times). When it is really bad I feel as if I am going to pass out... I wondered why. Even the Cardiologist had no idea... But you have given an important clue and it is highly possible that it is because my bp is dropping. Oh, my God! Finally the answer! On bad days just driving (not on a hill) makes me feel dizzy, lightheaded, etc. Because of this it is already one year or more that I have not used the car myself, I mean, I do not drive (I can but I do not feel healthy enough to do it). Have you been told how to avoid these symptoms or to relieve them? I wonder if we can do something,... Drinking more water, increase salt before driving... ? I know this may sound strange but you have given me a Christmas present by resolving the reason for feeling so bad while driving. Thanks, Mary I wish you a Merry Christmas too and a healthy New Year 2008! Take care, Love, Tessa P.S.: Are you being treated? What do you take?

Glad to hear that you finally got to someone who really cared and wanted to help and that you have a start to check what?s going on. I hope they can get to it for you to feel better as soon as possible. Take care, Love, Tessa

Hi Thanks for your answers, I have never been able to confirm that my heart stopped beating while having these reactions, (which I believe happened) but a severe bradycardia is at least something to take care with and I hope that with the medical report & these medical alerts, I can feel safe. Excellent idea, Amy. I will check at the pharmacy. He is a nice person and I am sure that he will help a lot. Thank you for the link... There is a wide range of "ways" to wear a medical alert. I wonder why they do not use this in Spain? I thought that medical staff always checked these alerts first. It is very possitive for the patient and for the doctor to know how to handle a patient... I will check it at the pharmacy and with my GP. Wauw Persephone! That sounds scary too! I suffered a terrible syncope on both reactions. Doctors had it really difficult to get me "back"... The Cardiologist did not have an idea of what was going on as he thought that it was just a vasovagal syncope, but I knew that it had to be more than that cause the way it happened was different to my normal POTS syncopes. Yours is a terrifying allergic reaction. Do you carry a medical alert? I hope you do. Take care, both Love, Tessa

Thank you, Amy. I agree. I think that a medical alert bracelet is not used in Spain (but I have to confirm it with my GP). Do you think that medical staff will understand if can get one with a simple word asking them to check my wallet for further information? Thank you, Love, Tessa

Hi Linda I am so sorry about it and hope you are feeling better now, though I agree with both Ernie and Sandra and my conclusion is that you have to look very carefully into this problem. Do not let you down and fight to get an accurated answer. There must be something going on and if you need to adjust your treatment or to control your heart: do it. 29 bmp is very low. Of course you have a headache, I wonder what I should have if my hr was that low and changing so often! Please, take care. Contact Dr. Grubb if you can - to show him what you have and go further if needed. It is your health, so keep up trying. Glad that you have the proof of what happened to you. Get a copy of it. Love, Tessa

Hi, I am sure that you remember the "funny" drug allergy testing I had done in order to verify a possible allergic reaction to a local anesthetic called "Novocaine", as well as a very strange reaction to Nitroglicerine + to a combination of other drugs, including Dolantine... Well, I have got the medical report by post. A one page report, most of it explaining my medical issues. The report mentions the following: As local anesthetic, we recommend Mepivacaine. We believe that the reactions explained by the patient, above all the one where it is mentioned the reaction after being given Nitroglicerine, are more likely due to an adverse reaction (or secundary) than to n allergic process, therefore, the patient should avoid it as precaution. Regarding the use of the combination of drugs, including Dolantine (for an endoscopy) where I suffered a decrease of hr, the report states as follows: the reaction suggests it was more likely an adverse reaction than an immune reaction. Even though, in those events we recommend to avoid that combination of drugs. --- And that?s it. There is no mention to "Novocaine" as I can see that they did not test it. It seems that they just tested another local anesthetic to recommend. Even though, they still say that I should avoid the drugs that caused an adverse reaction, as precaution. Of course, it is obvious that they have just repeated the information I mentioned to them, adding to avoid the drugs mentioned to cause the reaction... Well, at least I have a written medical report. I have been checking around and an adverse reaction can be as life-threating as an allergic one. I had a very low hypotension with syncope, a nurse told me that it was considered as a shock. It was indeed a scary experience for all, the nurse, Cardiologist and myself... Even for my husband who could hear their screams beyond the door at the waiting room... My reaction to Novocaine was also very scary and I ended at the ER... I assume that I should wear a medical alert bracelet as it would be very difficult to warn doctors to avoid Nitroglicerine, Novocaine, etc. while being unconscious... The Allergist has given a copy of her report for my GP. I am planning to ask him for whatever you think I should do. What do you suggest? Thanking you in advance for your answers and help, Love, TEssa

Hi Mark and Welcome to the forum. Thanks for sharing. That?s a long process too. But you are not the only one. I can sincerely understand your feelings... You will find a lot of support here. Feel home. Take care, Tessa

Angela, what a nigthmare. I imagine how you were feeling with all this health problem and your Cardiologist being so ... (better not to mention the description) Wauw! And you got to 278 just by getting up and at the Cardiologist?s ! That?s scary. What happens when you have to walk or stand longer? I am glad that you got that event monitor on you and that you managed to press it. I am sorry for you (for having that event) but happy that you could proof it (Sorry that you didn?t get the promised money on your account) I have no idea why my heart rate got so high... I was having my aerobic class (Step) and before the end of it I was feeling lightheaded, tachy and very tired but continued... When we finished, they asked for our heart rates. She asked who had more than 90 bpm. Some answered they did. She then asked who had more than 100. Less answered they did. Then she laughed and said "of course, noone has more than 170, do you?"... I felt so embarassed that I kept quiet. (You see, I am a shy person...). Hours later, I was still feeling so sick, that when I met my husband (boyfriend at that time) and told him I had a problem during my aerobic, he checked my pulse and when he confirmed that it was still about 120 (sitting), he was so worried that I did not mention my real heart rate after the aerobic class... (I said it was about 170) He made me promise that I would never return to the aerobic. And that?s what I did. When I told my GP about it he send me to a Cardiologist who made an ECG. I had sinus tachycardia but he did not investigate further. Since then I have been cutting down all kind of exercise... Until now, when I am unable to walk some steps up, etc. And now I know that I have POTS... (Though I also think there might me something more)... Both you and me have been trying to get to the bottom of our problems for a very long time and I am glad that you are getting where you wanted to. I agree. If you feel there is something else going on, do not give up. I managed to get a doctor to confirm that I was having sensitivities to gluten and casein. I thought there was still something else and I got a doctor to confirm POTS... Unfortunately this might not be the end, but I will not give up. Some months ago (following my request) my GP asked for a aldosterone plasma test and it showed an extremely low level (far below the normal values)... I am now going to the Endocrinologist for further testings... All my health issues right now may be symptoms but not the real cause... No matter the time it takes. It is our health and we have to fight to get to the right dx. Yes, Angela, please, keep us updated And thank you for sharing, Love, Tessa

Hi Maxine. I am so sorry about your reaction. Well, I am not a doctor but do you mind if I give a suggestion?Isn?t it better if they tested you to see what you can tolerate? I have never had a reaction to dental issues (at least not by now), but I had a similar reaction some years ago with a local anesthetic (Novocaine) while having an infiltration (neck). It was a very scary experience, also with severe dizziness, light headed, a very fast heart rate, chest pain and syncope. It seems that my bp rushed down too. I am telling you this because I asked for a drug allergy testing. Unfortunately it was not carried out the way I expected or the way they should have done it, because they did not tested the drug itself but another one (substitute) and the procedure was not very accurated but now I have been told that I should use Mepivacaine instead (because I had no reaction to it during the test). Of course, all bodies are different and you should test your reactions to know which one would be safe for you. The medical report also states that I had an adverse reaction to Novocaine and that I should avoid it (as well as other drugs listed)... The only way to know (safely) which one is good for you is to go through a test... But that?s only my opinion. It is said that it is usual for those with POTS to have adverse reactions to some drugs... I would rather be sure before trying at the dentist. Don?t you? Have you asked a doctor? Take care and please, keep us updated, Love, Tessa

Thank you for taking part in the poll. It has been very interesting to read your answers and to see the results. It seems that we have been obliged to cut on many aspects of our lives that we loved... But some of us can still manage to dance for a while. That?s good. Thanks again for your participation, Love, Tessa By the way, I am still without treatment, waiting for some tests on Monday. Still a very high hr but at least not chest pain any more (which is a great change). Thanks for the good wishes, SunsetParadise49

I agree. The most important is to find a doctor willing to help, to listen and to treat you. Above all, the doctor has to be first a person (I mean, who cares about people) and then a doctor. It seems that you found that person. Love, Tessa

Angela, I am so happy about that. Finally a light! I hope you can get to the bottom of it and that they can adjust the treatment to your real health problems. 278 bpm! Hey, you reached more than I did. I reached about 240 bmp after doing "Step aerobics" and scared to death when I got plenty of strange symptoms (for me they were really scary at that time). I thought I was going to die or faint... Hours after that reading, I still had a very high hr. Is it what happened to you? That you still had a high pulse after the episode? What were you doing to get to 278 bpm! (if I can ask) Please, let us know how you are going on, and take care, Love, Tessa

Congratulations! I am so happy about it. I hope it helps you feeling better and better. That?s a good news! Thanks for sharing Love, Tessa

Just a few words to tell you that I have read your inputs up to now, but I am unable to answer them all because I am feeling really sick. When I danced it was my first day without medication (and yes, I did not feel good dancing) Since then, my hr has increased a lot. Today I had 102 bmp at rest and increasing plus pre-cordial discomfort, fatigue, nauseas, headache, pre-syncope symptoms... I have been in bed the whole day and just connected to read your posts and give an update on my health. We have been considering going to the ER but the medication given at the ER would oblige me to cancel the test on Monday... We?ll think about if I do not improve. Please, continue participating. I?ll post again the moment I am feeling better. Thanks for your contribution, I am going back to bed. Love, Tessa

Oops! I am sorry, I have added your option to the poll but did not notice that it would put the votings to zero... I apologize I voted for the following options: No, I cannot I would love to, but my hr is too high.

That?s a good one. Thank you for making me laugh (I was feeling a little down because of this) Tessa