geneva

Nina, sorry your appt had to be delayed but hope that Friday's MRI will find something "easy" to fix...and hope that you can get the results sooner vs later. Surely your doctor gave you the additional Flexeril??? I can't believe the nurse gave you a hard time...what am I saying, of course it is believeable!! Have a nice long weekend and plenty of rest.

oops! must have hit twice...sorry

Hi Beverly, I just wanted to add my thoughts and prayers to those already expressed for Nicole, you and your husband. I know from personal experience too that being in a place where there is someone else in the house will bring peace of mind for Nicole. I stayed with neighbors for 6 weeks after coming out of the hospital. Knowing she has her parents surrounding her may be the most powerful thing she can do to start the long climb back. It is so wonderful that she is having some hunger! I have been to Mayo but I was not admitted so don't have any input for you. Even going as an outpatient for 3 weeks was exhausting and worsened my symptoms so I fully agree with your approach of in patient for Nicole. Please send a special Thanksgiving blessing to Nicole. I have enjoyed getting to know both of you and hope that the new doctor will have a positive impact on her health. I don't believe it is just coincidence that you and his mother were friends!

Hi Emily, thanks for posting the salmon recipe and others....can't wait to try some of them. Like you, I have all the same food sensitivities. There are days when I can think of a single thing to cook....oh, I also have trouble digesting any meat so I really enjoy fish and soups. yum.

Hey Nina, it's Saturday nite and I hope that means you have successfully completed your test and are out on the town....or at least enjoying a quiet, relaxing evening at home!

PAige, I wanted to add my concern to the others expressed here and hope that you are finding some relief from your symptoms. Please check in when you can as we are all worried about you.

Nina, just a side note....I still ship the bread from Mr. Ritts...5 loaves arrive just yesterday. I have not found any gluten free bread that is anywhere close in taste locally. Paul is becoming a good telephone friend!! Thanks again for the recommendation.

Very interesting article! I had always heard that astronauts on reentry had problems like ours but recover within days (unlike most of us). It is interesting that they are trying drugs to prevent or reduce orthostatic intolerance. I remember there are other things that space travel "discovered" that have other useful applications so who knows maybe they will uncover something useful for our condition.

Paige, how are you feeling today? I am so sorry you are feeling so bad and not feeling that your voice is being heard but hope you will raise it louder and louder until it is heard. Our families some time don't get it, I think, because when we go to an ER we more often than not are sent home. But, you know if something is different than your norm and if you are frightened, which is understandable, then I hope you will pursue every avenue until you are satisfied that you have been thoroughly checked out and hopefully given some answers. Please let us know how you are doing.

Amy, I just wanted to add that the massage therapist who has helped me for a year and a half said she was trained not to work on anyone who has low blood pressure. You might check with your doctor or therapist about continuing if it is particularly low. Also in the beginning any massage therapy I had, had to be done with the lightest of touch because it set off a reaction with my autonomic nervous symptom....dizzy and lightheadedness most often the issue. Never chest pain. You may want to check in with your doctor to discuss your meds and if they could be contributing to these symptoms. It takes months to get things worked out sometimes.

I can usually count on prune juice to at least get things moving for me...yes, Emily, just like grandma (LOL!) BUT, it only works for me if I take it the 1st thing in the morning. After drinking a glass full of prune juice (hey, warm would be good to try) I then follow it with at least 16 ounces of COLD water (salted of course). If I do this in the afternoon or evening, NOTHING happens except I feel bloated. In the am I think it works because the hit of sugar and fluid loading in a very short period. I have read that cold water is better to jump start metabolism...who knows for sure, but generally this helps me. Don't know if it is good for someone pregnant or not. Jessica I hope you find some relief soon.

Corina, so glad that you had a great trip. It is wonderful to be able to get outdoors and enjoy nature especially with your friends. But, what incredible timing for the electricity to go out! So glad you have gotten everything back up and working.

Julie, so sorry to hear that the ceftin is causing you some problems. I know that high a dose of ceftin would be impossible for me to take without major GI and POTS flare. My guess would be that the diarrhea is a reaction to the Ceftin dose but if you are coughing up stuff then it does sound like the antibiotic is doing its job. This is always the catch 22...you need the antibiotic to fight the infection but the med triggers a reaction. I think it might be worth asking your doctor if going back to the lower dose would be an option, especially since you will be on it for 2 weeks.

Leah, when it rains it pours. So sorry you got food poisoning on top of everything you are trying to juggle right now. Another example of how people can be uncaring just to make things more "comfortable" for themselves. Unfortunately, that is not what is important and I am glad your brother made the call for you. Accept the help with future job and go on with your life. Your former boss is the one clearly at fault and she is the one who has to live with that and she is the one who got called on the carpet so to speak. Good luck pursuing your studies.

Hi Sue, good to hear from you again. Sorry to hear about the fall. I have never had surgery before but I think there have been posts before about anesthesia and the like for those who have. I sure hope that it won't come to that for you, especially before the holidays! take care.

Oh, Tearose what a horrible experience. I have read posts in the past about this happening and I am horrified to think that people can be so uncaring. I have tried to imagine what I would do in the same situation. I think I would probably be in shock and just go about my business without saying anything....but would still let it affect me internally. So shouting does help for the release but I know for me it would mean an instant flare. I think Ernie's post is correct that trying to educate ignorant people like this person clearly is a drain. I hope you are relaxing with a good book and cup of tea this afternoon.

Hi Amy. Sorry that you have been dx with POTS but really glad that you found this group. Shared experiences can help you learn more about this strange condition. As you can see HR can be consistently high -- mine always was at the onset when I stood -- or hit and miss, which is how mine is now. Stress really does play a very active role in managing POTS....something hard to do as you adjust to an illness like this, but the better you can reduce stress, the better you will probably feel. Keep asking questions!

Martha, that is such wonderful news and I am glad that the therapy is helping you. Emily, good luck with your therapy as well...hope you find a better treatment plan.

I get a number of strange feelings in my head that are definitely NOT headaches. Not sure exactly what yours feel like but can tell you that a few days ago I had a pounding pulse that was above my left ear. I could easily count my heartrate it was so loud. When I touched that part of my head it felt like I had bruised it. I couldn't remember if that had happened to me before (probably had) but it was unsettling. Lying flat it was worse. Lying raised up and on my left side made it better. It lasted 2 days and then gone. I also get pressure at the base of my skull. Used to be very strong like someone was trying to push a brick from the inside of my skull outward. Florinef made this much much worse. Lying on my side helps for this problem. These strange head tricks worry me some at that moment but I try to remind myself that I have had my head in the MRI machine quite often so I figure it is just POTS. If your problem continues or you are especially worried about it be sure to discuss with your doctor and if you haven't had your head examined ( in the best sense possible!) it is worth it to check that out so you know it is just another little gift from POTS.

Hi Julia. My experience is that 1 round of antibiotics is often not enough to get rid of an infection....mine is usually a sinus infection. I used to take Ceftin also but it causes GI problems for me even at the 250mg level. I hope that you will do OK on the much higher dose. 2 weeks at that high a dose is a lot but should get rid of your bronchitis completely. ALso, think of it this way, it should protect you from some of the bacterial bugs that go around this time of year. Take care.

Hi Ling. I have had the really bad pain in my calves before and my doctor once decided to do the ultrasound to check for blood clot because severe calf pain is a symptom. Everything was normal. The pain would come and go and it wasn't my potassium level although as said above that can also be a cause of pain in the calves. Months later a nutrionist/pharmacist told me to try taking magnesium which I did and I have not had the pains in 7 months. I know it can drive you nuts with the leg pain because you don't know whether to relax it or exercise the heck out of it! I would rub mine over and over again, do calf stretches and try walking...abd then it would come back again. Be sure to check with your doctor so you can eliminate the obvious. Hope you feel better.

Anthony, welcome! I am sorry that you are going through a difficult time but I hope that you are sharing your concerns and fears with your parents. Having a son just a few years older than you, I know that can be hard to do but you don't want them thinking you are OK when you are feeling so scared. POTS symptoms can be similar to other illnesses and as Mighty Mouse has said getting a good diagnosis, through tests, is the only way you and your doctors can rule in/out the list of potential illnesses. Unfortunately, that usually takes some time and the hard part is how to manage your fears in the meantime. Be sure to be 100% honest with your parents and your doctors and stand up for yourself as necessary when describing your symptoms. BTW, not all of us have low BP. Mine can be low, but with any stimulation -- flourescent lighting, noises, car travel etc -- it will jump quickly. Hang in there while you go through the testing. I hope you begin feeling better soon and get answers to your questions. Good luck. Geneva

This is a giant step forward or so it would seem for the thousands who have suffered so long and been told it is just from stress. WHY does it take so long for those in charge to move beyond stress and anxiety for those conditions they don't understand? Just rhetorical question. Thanks for sharing the article.

Jan, I haven't had any experience with Lexapro but I wanted to write anyway and say how happy I am that you are finding improvment. That is wonderful!

Emily and Ernie, just wanted to say I hope you guys also will bounce back soon. Hope you are surrounding yourself with some of your most comfortable things, be it food, books, music or pets. take care.