Jersey Girl

Melissa, I just tuned in after being away a few days to find you back in the hospital. I am so sorry to hear this news and want to wish you improved health in the near future. Hoping you can get a massage maybe after you are transferred. Martha

Ernie, Sending you good, healing vibrations all the way to Canada. I hope you're on the upside soon. Best, Martha

My blood pressure has been very unstable over the years and I was put on Verapamil, a calcium channel blocker for about 6 months at one point to bring it down. Then when it was really low, I was put on Florinef and also had the same problem with too high BP. Lots of fluid and lying down help me the most. Martha

Good luck! Martha

I would also be interested in meeting closer to Grand Central station--Queens is too much of a trip for me. Martha

I had same reaction to Florinef and had to go off it as well. Martha

WELCOME! Martha

I have not been diagnosed with EDS, nor do I think I have it, but I also have these more visible veins apparent as does my mother and daughter too! Martha

I had my first colonoscopy this past summer and drinking the nulyteley(?) was the worse part of it. I did arrive early at the same day unit in the hospital so I could receive extra IV fluids before the procedure and this helped. I also had a long consultation with anaesthesia so they wouldn't give me anything related to medications that I had remotely reacted to in the past (NSAIDS, for me). Ask to be scheduled first on their schedule so you have more time to recuperate afterwards and it is less time between not eating from the night before. good luck! Martha

Yes, I am over 40 and in order to attend my son's wedding, I had monthly injections of Lupon over 5 months hoping to go into menopause to end that horrible increase in symptoms associated with PMS and the aftermath. I did feel somewhat better, but then my period returned with a vengeance with even worse symptoms, but I did get to go to my son's wedding. I had tried Alesse and progesterone the week before my period but had such severe reactions to both of them that I had to be hospitalized two months in a row. I am still getting regular periods at 54 and dealing with all these same issues. Martha

I have tried water aerobics for almost 2 years on and off and highly recommend it. It tends to attract a lot of seniors but that is about my speed anymore (on a good day). I don't know where I read it ( I think it was the chronic fatigue website Prohealth) but one of their articles noted that bouncing in water helped with the dysautonomic symptoms of Chronic Fatigue Syndrome. I bought water aerobic sneakers (Ryka brand) and wearing them for the classes really helps with being able to do some bouncing in the water. I almost feel back to normal for a short while after the class is over--more importantly I am able to do something aerobic and prevent deconditioning from lying around so much. Martha

Hi Dayna,

My left shoulder bothered me on and off for years before POTS onset almost 5 years ago (probably viral as per spinal tap, but maybe related to onset of perimenopause or BOTH), then my right shoulder started bothering me about 3 years ago and got progressively worse. I ended up getting a second opinion from another orthopedist after my headaches and shoulder were so painful that the right shoulder froze and I needed urgent surgery. It turns out that I had bone spurs that the nerve was hung up on and calcifications in my rotator cuff. A year later I had similar surgery for bone spur on the left shoulder. I have had alot of physical therapy on both shoulders over the last 2 years and have seen a slight improvement in the POTS symptoms as well. I think the pain and discomfort of both shoulders was making my POTS worse. I am still dizzy and exhausted but the pain has definitely improved. Don't give up hope--it's all we have and a positive attitude is essential to any improvement. Martha

Hi Melissa, I hope that you will be on the mend soon now that they know what's wrong. Wishing you a better New Year! Martha

Yes Yes, and Yes... My cortisol levels were also abnormally high when I first came down with POTS, unknown at the time. I also have the neuropathy, much worse a few years back that I was so thankful I was prescribed Neurontin for. I still get the facial numbness at times and have joint and muscle issues on my left side. I never received an adequate explanation for many of my symptoms from any M.D. but wonder if it's not related to fibromyalgia, another condition without adequate explanation, or just part of the POTS I still deal with. I insisted on PCR testing (not covered by imy insurance) for Lyme just to reassure myself that it wan't related. I also agree that hormonal issues are a big part of what makes my POTS worse sometimes. Hope you get some answers. Martha

Hi! So sorry to hear that you are having increasing symptoms. I can not take beta blockers--tried many, they make me really worse. I also went to visit my mother over the holidays for a few days and snuck off to another closeby gate (that didn't have a flight leaving) to lay down on the floor on the way home and take my emergency Xanax while waiting to board (only a 2 hour flight), because the headaches and tachycardia were getting to me. I CANNOT overdue anything and must frequently lie down during the day. Hopefully this is a temporary setback, maybe hormonal. I hope your physician is able to help you. How awful you must have felt and frightened you must have been when this all occured. Keep us posted.Martha

Hi Jessica,

I had the spinning senstion for years, really bad and still get it if I overdo it ( i.e. try to do what normal people do in a day). I get nerve pain in my left ear and I am definitely still noise and light sensitive. A busy store is the worst. Good to hear that you are up to chasing two toddlers around! Martha

I would definitely get a second opinion from someone more familiar with POTS--I had this exact same experience. My first tilt table test was abnormal and diagnostic of POTS, but I was also told that I just had vasovagal syndrome. AND NO TREATMENT or acknowledgement of how debilitating my situation was! You might have to go to a regional center to get the care you need. Sorry--Martha

Nina, I hope you have a productive visit with the new doc and have the opportunity to get some well-deserved rest. Martha

Dear Melissa, I hope today finds you just a little bit stronger and that you will be able to return home soon. The largest hurdle for me since developing POTS was (and still is) learning to develop patience for the way my body reacts to everything. I know you have always been a source of inspiration for us all besides having the gift to explain the unexplainable. FEEL BETTER SOON! Martha

The fact that he was leaving the Wiggles was announced on the Today Show with Matt Lauer this morning --they noted orthostatic intolerance with a genetic basis. Maybe the Today Show and /or other shows will have more coverage on what ails us. Can we send Greg a DINET T-shirt? Martha

I only take a small dose (30 mg.) because it gives me a stomach ache which makes the POTS worse, so I try to take it at night. It does help with giving me a little extra energy. What brand do those of you who take 900 mg. use? Martha

I had these same incredibly worrisome, bad symptoms for a few years after coming down with POTS, so I do feel for you. At that point the only thing that took the edge off for me was Neurontin and an occasional Xanax. Martha

I am so sorry for your loss. Love, Martha

Hi Morgan--it's good to see you post again! Martha

I agree with Futurehope. Everyone has major stress in their lives from time to time, some worse than others for sure. But I believe that it is how our bodies are wired to react to these different stresses that sets us apart. Maybe we are all long lost cousins! And Katherine is right as well about most of us being misdiagnosed for so long that creates extra unneeded anxiety. Martha