geneva

Hi Tearose, You said it is an "extremely rare finding" but I can't find where you say what they found from the biopsy. Sorry you have to go through this again but it is great that you so quickly found an expert and were able to get an appointment. Do check back in cuz you know how we worry!

Tearose, sorry you had to go through all that. Oh my....being on your tummy and then turning over and sitting up....I know exactly that yucky feeling. Of course, you were well prepared...smart lady! I hope you can rest well tonight. It is good that you have a doctor that is willing to get your results to you so quickly. I will keep you in my prayers tonight that all will be fine with your results.

Frank, First, I just want to say I understand about the denial. I was there myself many times in the first year. I KNEW that IF I could just find the right doctor, I would get the right treatment and I would get better, return to my life and put this illness phase behind me. Unfortunately, that wasn't to be although I have found improvement...very gradually over years and consider myself one of the luckier ones. There is a very good article in one of the DINET newsletter about the stages of living with chronic illness. I strongly recommend looking it up and when Christine is ready, letting her read it. In answer to what do the doctors do for the head issues that can't be thought to be POTS....well, my doctors don't know what the cause is so they take all precautions and research each symptom for KNOWN causes. If all those tests are normal, it is decided that indeed the dysautonomia IS most likely the cause. No, I do not take meds for them. I was on a BB for 2 years but stopped because I became intolerant (too low bp no matter how small the dose) and Florinef which I stopped after 3 years because it kept me in a WIRED state all the time. Trouble looking up or down was actually the symptom that allowed doctors to dx me. Standing HR wasn't enough to pinpoint. When I have pushed too much this symptom comes back and I can't read, use PC, watch TV or bend over to do anything. Again, doctors think this is all part of the dysautonomia. Sounds like Christine is listening to her instincts about the bday party. I find I do fair when we have family/friends in small groups. Big gatherings are really, really hard because of overstimulation. hope you and Christine have a good appointment with the doctor this week.

It is so GREAT when there is good news to share. CONGRATULATIONS! I hope that you will continue to improve so that you can take full advantage of this opportunity you have earned. I look forward to hearing your progress. All the BEST!

Gena, I am sorry for your loss and I know that it will take time to process all that has happened recently. Take all the time you need and know that we are here whenever you need us. I will keep you in my thoughts and wish you much healing energy in the days and weeks to come. Take care of yourself.

Lois, congratulations to your daughter! This is a wonderful accomplishment and I know you must be so proud of her. Take care of yourself as you return to work. I so understand what you say about the reason you retire. When people ask what I do, I say I took early retirement although I don't get my retirement for several more years...but it makes me sound "normal" (LOL). Take it easy and try not to overdo.

Emily, WELCOME HOME!! So glad that you are doing better and can check in from time to time. Don't overdo however!! Say a big hello to your Mom who was so kind to stay in touch with Merrill and pass on news of your recovery. wishing you a continued recovery.

Tearose, I have not heard of any connection either and as you know, I use a monitor, not every day but often. Sorry you are facing a week of tests and waiting to get the results. I'll be thinking of you.

Hi Frank and Christine, Welcome to both of you. I think you will find this is a friendly and knowledgeable group of people. I wish Christine that you didn't have reason to join us but know that all of us have felt the way you do at one time and most do find that improvement comes. I have or have had I think every condition you listed. You asked in particular about the weird head pain or sensations. Yes, I get these! 2 nights this week when I was removing my shirt -- arms above head -- the tingling (pins and needles) and then tenderness started immediately and lasted 10 minutes. Other times I get a large circular area near the top of my head -- kind of like a baby's soft spot I think -- and it gets so tender I can't even brush my hair. It may last a few days and then be gone. I have had MRIs and MRA and nothing has ever been found to explain what brings on these unusual sensations. Doctors have no idea what is causing this but it always goes away on its on. I do find that if I will stop what I am doing and lie down, it usually lessens in intensity. I also have hypovolemia so when these sensations happen I try to increase my fluids as well. I have had chronic neck pain and upper shoulder pain since the onset of POTS and while this "coat hanger" pain has been documented by an expert, I cannot find any explanation for why some of us have it. I have been going to massage therapy for 2 years and while it helps a great deal, although it is never gone completely. If I stop going the pain starts again in earnest. In the beginning, I was so sensitive and could become dizzy that the therapist had to use the lightest of touch. I think for me this is caused because of hyperadrenergic -- anything, like touch will over stimulate my brain and body and cause POTS symptoms. Over time, my brain and body adjusted. I would also like to add that if you have any sinus or allergy issues it can make any head stuff worse. I had a massage on Thursday and felt facial pressure and a head weirdness and I know it was because my sinuses where congested. I hope that you can find some relief Christine. Believe that your life will get better but you have to learn (this is the hard part) to make and accept lifestyle changes. It takes a whilel to come to terms with this disability. I am lucky to have a supportive husband and he readily works with me on how we can do things better for me. Sounds like Frank is there for you as well so you are lucky too! good luck to you both and your beautiful child.

Amy, sorry your whole family came down with the flu. It has been nasty around here as well. My family laughs at me because I am the purrell queen, always squirting it on my hands whenever we get back in the car! take care.

Steph, the only soy I use is Silk milk which I really like. I have trouble keeping weight on because my system doesn't digest anything well (no gluten, dairy, meat) but the one thing I stick to eating is peanut butter and/or almond butter every day. I buy organic and learned to like it a lot. Do you think you can handle eating this? My doctor actually recommended I do this to keep my weight from falling too low and give me much needed protein. It works for me. I can't use supplements either. good luck and I hope you have some success with creatine and diet.

Gena, I am so happy that you finally got some much needed rest. It really can make a tremendous difference in how we feel. I think that you have done a wonderful job being there for your grandmother....sitting in the ICU waiting area and keeping the anxiety and fear at bay is not an easy thing to accomplish for anyone but when you yourself are ill, just being in the hospital environment adds to the unpleasantness. Stay strong and feel free to take whatever support you need during this difficult time.

Stacey, I am sorry that you continue to have so much stress in your life. I would guess that one of the reasons your family looks to you is that you have been so strong in managing your own illness and they probably feel inadequate and/or overwhelmed at this time. Not that that is any reason to put so much on you of course. I hope the next couple of weeks there are answers for your dad but please do remember to take the time for yourself.

Kathleen, you certainly have every right to be upset. In reading your story what I find most upsetting is that he acted like everything was OK when you were with him and then made that entry into your record after the fact -- like Sophia, I was wondering if the paper you read was an entry in your records?? How can you possibly trust someone who is not upfront with you...even when he is wrong? I, too, think I would want to confront him, probably in writing, with the paper attached and ask him to explain. In the mean time, I hope that you can find someone else in your town that can help you out. I am so sorry you had this happen to you.

Gena, wow, you have a lot on your plate right now. Having had a teenage son, I can understand some of the challenges of a 15 year old moving in with you. Good luck there! Also, you are obviously exerting a lot of emotional energy with your grandmother's situation so it is no wonder you have fallen into a potshole. Just remember that you have to make time for yourself a priority because you can't give to others without properly taking care of yourself first. The ladder to climb back out of the potshole may be too short right now to reach you but we'll order a longer one to send down to you and have a nice batch of just out of the oven cookies waiting for you!! Sending you lots of positive energy Gena.

My son inherited a sunken breastbone from his grandfather but neither have/had symptoms of POTS. I don't have. Interesting information as this is the first time I have heard of a connection.

Merrill, thanks so much for sharing the update on Emily. I am glad that she enjoyed the card campaign! It has been a long 7+ weeks for her. I hope having the IV fluids out means she is really on the road to recovery. OT, I know, but still wondering if anyone has heard from Nicole's mom...it has been ages since we have heard how Nicole is doing.

Katherine/Merrill, can you post a link to where we can access the full document? This is a very interesting topic! I am going to try to process the new information and maybe take to my next doctor visit.

Just a personal note about whether anxiety is a cause of POTS. I also think not...when I was diagnosed the doctor said to me that he knew I had been told that I was probably suffering from anxiety for several months by different doctors. He told me never to accept this explanation for my symptoms and to have any doctors contact him if they thought so. His reason was that while I was in the hospital and on the cardiac ward, he watched as my stats were perfectly normal lying down but when I stood up my bp held and my HR soared. He said "no amount of anxiety can cause you to only have a rapid heart rate just when standing." That reassured me. Like Katherine I have found yoga to be helpful in my life. good luck finding what helps you.

What a wonderful weekend you must have had and congratulations for getting beyond the fear of WHAT IF. It is so rewarding to be able to have those moments where things are a little like life before POTS. Thanks for sharing.

Oh, Danelle, I am so sorry to hear this news. It is one thing when WE are sick but quite another when one of our children is stricken. My heart goes out to you. How old is your son and how is he feeling? I hope that you have a support system in place that can help you manage through this latest news.

Julia, this is really encouraging news! Good luck on this next leg of your journey.

Mary, maybe we should declare a pajama party and just stay in bed today (LOL) Nina I hope you are doing much better today. I am very glad you confessed to the neuro.....I can just imagine him shaking his head at you and saying, "now, tell me again, WHY didn't you go to the ER for stitches and a check for concussion?" and then laughing. You must behave yourself Mighty Mouse! Blackwolf, do not follow in MM's shoes! As Mary asked already, did you get yourself checked out?? btw, I have to take extra precautions about falling because I have osteoporosis in my hips already and if I fall, I break....ouch. Be safe everyone!

Morgan, how outrageous to be told, in essence, you aren't sick enough for us! Sorry and I know this must be beyond frustrating for you. BTW, I have told friends that my tombstone should read, "I didn't KNOW" meaning that when something bad happens, I debate whether this is the time I should go to the dreaded ER or not because we all know what that feels like. So far, I have survived all the episodes but 1 day, I might make the wrong decision (LOL). Dan, good to hear from you again! Hope that things go well at Hopkins and the process of coming off the Ativan is going well for you. I am sure it is difficult. Hang in there Morgan. Oh, how did your talk with the PT go?

Katherine, thanks for the information. The abstract referenced "treatment directed against mast cell mediators may be required" which is what made me think maybe they had something specific in mind. What a good idea to write the author.