Chrissy

I just got back from a week in Orlando, Fl, doing the Disney thing. Being new to my condition and not knowing what I could and couldn't handle, I was winging it. I didn't want to use a wheelchair if I didn't have to, but after being on my feet for an hour, my legs were splotchy, my feet were blue, and my joints were locking up. Stupid me I didn't do anything about it, I was having fun and figured I could rest my legs when we got back to the room. Well by the time we got back to the room I could barely walk and my ankles were swollen (primarily on the left). I got off them for the night and in the morning the pain was minor, but there was still swelling. Day 2 was like day 1, but with an earlier start in the pain department. On day 3, my legs had had enough, but I was determined not to get a wheelchair. I wasn't ready to admit I needed one, but by the time we got to the park everything below the top of my knee was in EXTREME pain, again I was determined to have fun and ignored the pain. STUPID!!!! By that night I gave in and went to the first aid center, their first thought was a spained ankle, until they found out it was in both ankles. They then said it was caused by fluids gathering in the legs, creating pressure... Now they tell me. So they prescibe ice, elevating the legs, and staying off them for awhile. The next day we got a wheelchair, but sitting all day didn't help the situation. My legs still felt the pain and swelling, I iced and rested them overnight. On day three, I forced my feet into my boots (brought tears to my eyes) we drove to the shuttle launch and after an hour of having my boots on I didn't even notice the pain. (it felt more like a bruise) By the time I took my boots off the swelling was gone. We did the wheelchair the rest of the trip and the swelling was minor. We're home and I still have swelling and pain if on my feet for any length of time. Not sure how long it will last or if it can be prevented in the future (being I have problems while sitting and standing), but I definitely won't push my limits again. Chrissy

I AM JUST GOING TO BE 18 IN 2 WEEKS AND HAVE GOT REALLY BAD STRETCH MARKS ALL OVER MY BODY!!! THEY ARE DISGUSTING AND I DON'T KNOW WHAT IS CAUSING IT. DOES ANYONE ELSE HAVE THIS PROBLEM. USUALLY STRETCH MARKS COME FROM LOSING A BUNCH OF WEIGHT OR AFTER HAVING A BABY, I HAVE NOT HAD EITHER OF THESE PROBLEMS. THEY JUST APPEARED AND KEEP SPREADING. I WOULD APPRECIATE ANY INPUT YOU CAN PROVIDE ON THIS SUBJECT. THANKS! CHRISSY

BEING THAT DYSAUTONOMIA/POTS AFFECTS THE BLOOD PRESSURE AND HEART RATE SO MUCH, WOULD YOU CONSIDER THIS A HEART CONDITION. I AM GOING TO DISNEY WORLD FOR MY BIRTHDAY AND MOST RIDES CAUTION ABOUT "IF YOU HAVE A HEART CONDITION...". I AM NOT EVEN SURE IF I WILL BE ABLE TO HANDLE ANY OF THE RIDES BUT THOUGHT I SHOULD GET THE ANSWER TO THIS QUESTION BEFORE I GO. THANKS IN ADVANCE FOR YOUR REPLIES! BY THE WAY, I FINALLY HAVE MY SCHEDULED APPOINTMENT WITH DR. ABDALLAH IN VA FOR AUGUST 22ND & 24TH.

Hi. I am hoping someone can give some possible answers to a horrible odor I have had now for several weeks. I have dysautonomia, but have not been pinpointed as to a specific syndrome yet. My symptoms are very progressive. I have alot of pain below my belly button and have noticed a very offensive odor. It is not from urine. It smells like something died inside of me. We plan to see a urologist but like we all know, most regular doctors don't understand this disorder. Do you think this is related to dysautonomia? I will be traveling from LA to VA soon to see the specialist there. I have heard that he is one of the best. My cardiologist has prescribed florinef to help regulate my blood pressure but that is all I am taking right now except benedril when my itching is so bad that I can't stand it anymore. I do try to just cope with the symptoms as best I can because I don't want to find myself on too many medications. It seems every time you go to a doctor, they want to put you on something else. That is what I will be glad to see the specialist. My neurologist is very understanding but admits that he does need the guidance of the specialist b/c the autonomic nervous system is too involved and there are thousands of tests that could be run. Please let me know if anyone is also having this odor problem. I do see that several are seeing a urologist and was thinking maybe this is why. Also my monthly cycles have gotten much shorter than before I got sick. Thank you for any info you can provide. Chrissy

My neurologist is ordering a nerve conduction study. I was wondering if this will show results that verify a POTS diagnoses? Thanks for the info!

I just found it! It is found in a very long article at http://home.att.net/~postsweb/POTS.html The specific part about the bed says: It has also come to my attention that some doctors continue to advise POTS and NMH patients that sleeping with the heads of their beds slightly elevated at night will improve the orthostatic tolerance. This method was originally developed to help patients with classic orthostatic hypotension diseases, such as Shy-Drager syndrome (multiple system astrophy) and Bradbury-Eggleston syndrome (idiopathic orthostatic hypotension). Those diseases usually cause supine hypertension (high blood pressure while lying down). It was simply assumed, without clinical studies, that elevating the head of the bed would help those with other orthostatic intolerance conditions as well. There is now documented evidence to suggest that some percentage of POTS and NMH patients experience supine hypotension (low blood pressure while lying down), which often manifests itself after the patient falls asleep. If your blood pressure drops to below normal levels while sleeping, the last thing you want to do is to sleep with the head of your bed raised, thus draining even more blood and vital oxygen from your brain while you are unconscious. It is therefore advisable that patients only elevate the head of their bed at night if they have proven supine hypertension." I found this whole article to be very helpful for me as I am just learning about POTS. I still have not gotten the official diagnoses from the cardiologist or the neurologist. But the symptoms keep multiplying. They will eventually figure it out. In the meantime, I am just keeping a journal to take each time I have my appointments.

I had read that also and had concerns because I sleep in a waterbed and that would not be possible. But then last night I found some information that stated that it used to be thought to do this but then they found out it was not a good idea. As soon as I find it again, where I read it, I will direct you to it so you can also see why they said that. I hope this helps!

HELP!!! I feel like I rolled in itching powder from my scalp to my toes. Any suggestions!!! I need some relief, NOW!!!! Thanks, Chrissy

HI. My name is Chrissy. I am brand new to this Forum and have not been officially diagnosed. My tilt table test was positive and the results said "autonomic dysfunction". So then I started the internet search and found this forum. Thank Goodness!!! I appear to have POTS but I have had many, many symptoms for the past 6 months. The most recent of them is that on May 28th, my pupils dilated and have been that way ever since. I was wondering if anyone else has experienced that. The cardiologist that did the table test just told me that I have a "condition that caused the blood to pool to my lower extremeties" and that I need to take 20 mg of Lexapro and eat lots and lots of salt. That was all he said other than make a follow up appt for 3 weeks from now. My mom picked up the results of the table tilt test from the hospital. I had been seeing a neurologist for the severe head crushing pain I have had since February. But my first symptom was the major chest pains (like I had been hit with a baseball bat) since December 04. After reading lots of info, I am wondering if all this is due to a mono episode 5 years ago. I am 17 and will be 18 in July. Many days I cannot get off the couch. My waking bp the past few days is 93/55. But once I get up and move around it regulates. The only reason I ended up at the cardiologist is because I fainted (one time only). I have lots of pre-syncope but then I sit down. Thank you for any info you can share that will help me understand what I have to "look forward to". What do you think will be my next step, medical testing wise? I have read of so many different specialist that so many of you are seeing. By the way, I did have an MRI when no one could figure out what was causing the severe head pain and there is a small spot in the "deep cavity of the brain". I was told to ignore it b/c it was not big enough to cause my symptoms. I am going to request that they redo it to make sure it has not grown over the past 2 months. I look forward to meeting many of you in this Forum and sharing stories. Thank you! Chrissy