Jersey Girl

Hi Briarrose, My POTS (undiagnosed for a good while) started out with severe neck spasms. I had X-rays done of my neck and spine 3 times because of it--no findings. The spasms were definitely worse on the left and were accompained by the most intense debillitating headaches over the past 3 years. I then developed bad neck pain on the right side about a year ago, which I now know was caused by nerve impingment and calcifications in my right rotator cuff (shoulder). I can finally say after shoulder physical therapy that the headaches on the right side are finally subsiding. I thought for the longest time that this most recent neck discomfort was related to the POTS, but in my case it was caused by other muscles substituting for the rotator cuff and again, it is a case of imbalance in the body--musculature this time that caused the stiffness, pain and headaches. I was also told that there is a 50% pchance that I have the same thing going on in the left shoulder, as I have milder, similar symptoms and some weakness as well as noted by the therapist. My physical therapist stretches out my neck muscles carefully 3 times a week and showed me some neck stretches to do at home as well. These exercises do not aggravate my POTS--if anything they help stabilize me because I don't have the constant pain signals sending out distress symptoms to the rest of the body. I was surprised as anyone that the physical therapy has been as helpful as it is. I hope you find out what is causing your bad neck pain as well. Martha

Great Job! You made it! Martha

Last weekend I purchased some undergarments from Victoria's Secret in the mall. Not what you're thinking! (My 20-something daughters dragged me in!) They have much more spandex than many of the "compression garments" sold for a lot more money. I get such a stomach ache frequently from wearing the ones over my abdomen. I think Victoria's Secret has a semi-annual sale coming up and they have on-line specials as well. Martha

Hi! I feel the same way about having all you can take some days. But, I totally agree with Tearose's suggetions. I am also taking a non-medicinal approach to managing my symptoms as well, because I also have found that most any medicine makes other symptoms worse. I felt that Yoga really helped me when I could do it prior to my recent shoulder surgery. (I started with an easy class and bought some Yoga tapes to follow at home) I'm still in physical therapy post shoulder surgery for nerve impingement and calcifications and have found that after 3 months of regular therapy on my shoulder and neck, the pain has improved, as I don't have the pain and discomfort setting off the dysautonomia as much. I wish I could say the same thing for eating--it definitely makes things worse, yet I still eat and drink like a fish. And those monthly cycles are the pits. Swimming at an indoor pool also helps with the shoulder therapy and the POTS and a general sense of well-being. Keeping my leg muscles strong by exercising also helps with my endurance. I try to get out of the house at least once a day to do something. It was 3 years for me this past March with these crazy symptoms and I know that these annniversaries can be upsetting. I am still hoepful that someday I will forget that I have this condition. Wishing you a better day! Martha

Hello Nina, About 3 years ago, I had the first of 3 monthly Lupron injections because I wanted to attend my oldest son's wedding . I am so medication sensitive and was apprehensive, but experienced really very minor side effects at the time and was happy that I had the injections because my period had landed me in-patient at the hospital for a week the previous 2 months in a row! The only down side I had was that when my cycles resumed after 6 months, (I had been told that I would most likely go into menopause but I didn't) I definitely had a worsening of symptoms (a return to almost being bedridden again) for a few months. But I know that overall during those 6 months I did feel somewhat improved. I don't know what the ramifications are for staying on it indefinitely. Good luck. Martha

I also experience a worsening of symptoms during those monthly hormonal fluctuations--ovulation and pre-menses are the worst for me. It doesn't matter what I do to try to make myself feel beter. It is good that you have come to accept that sometimes you will feel worse than other, because worrying about it only makes things worse. I have taken a tiny bit of Xanax during those times (1/4 pill) and it helps a little. Martha

I had ear nerve pain for over 2 1/2 years after developing POTS and no one could ever tell me why. It would intensify whenever my headaches would intensify and was only somewhat relieved by Neurontin. It has ever so slowly diminished, but I still have it occasionally when I get the headaches. Martha

Susie, you should have all the tests to determine if you had a stroke or not. I also had stroke-like symptoms and multiple diagnostic tests (hospitalized for one week), and like Katherine, it wasn't until I was diagnosed later with POTS that any of the symptoms made sense. I saw numerous neurologists who insisted I didn't have a stroke. At times I still have trouble forming the words with my mouth and sometimes I say the wrong word and I have weakness on my left side that is very slowly improving. I have a slight left facial droop as well. The numbness I had on the left side is also improving over the last 3 years. Hope you're feeling a little better. Take care, Martha

I "work" everyday to try to improve my health and take care of my family. I did work outside the home but I was forced to resign when I couldn't get out of bed without getting headaches that made me cry, excruciating chest pain and tachycardia and shortness of breath and my extremeites turned blue and purple. Martha

I had bad reactions to zoloft (and most other medications too) but I know if I do too much one day it definitely makes me worse the next. Hope you have receovered somewhat by no. Martha

Morgan, I have experienced so many unexplained myalgias and neuralgias the last three years, and it doesn't make them less uncomfortable. I was on varying doses of neurontin for 2 years because of them. Don't let the doctor stress you furthur. Maybe a chiropractor or osteopath could render an opinion as well. Keep your spirits up. Martha

This story took place in the same area that I live in--we have rampant Lyme disease, especially now that the weather is getting warmer, everyone should be aware if they work outside in their garden or take a walk in the woods or have a pet, that the risk is there for contracting this nasty disease. I was also prescribed many of these same anti-anxiety medications (they had no effect on me) because no physician at 3 different medical centers could find out what was wrong-- even when I had an abnormal tilt table test, it wasn't correctly interepreted! I had PCR testing (like leaving a DNA footprint for Lyme) that proved negative and my spinal tap was negative for Lyme but showed some protein which was suggestive of a viral infection. I saw an infectious disease specialist for Lyme (not Dr. Gaito) who also said that I didn't have it as well, and at least he was willing to keep looking for an infectious agent at the time. It is certainly frustrating (an understement) not to have a diagnosis other than psychiatric illness when you feel so rotten. Martha

I believe that when they say your autonomic reactions are "ok" they are implying that you don't have autonomic failure--but I stand to be corrected. Martha

Dear India, When I was first ill and not diagnosed yet with POTS, I ended up being hospitalized for almost a week two months in a row during the time of my period. Looking back I know now that it was not just coincidental. I become very tachy and still end up in bed a good part of the week during my period even after 3 years. Extra, extra fluids help but I still feel especially unstable and ill. In the middle of the month I also get very tachy for a day or two. I generally have taken a small dose of Xanax during these times to help me cope. No good answers for this problem. I was told that there is documented extra adrenaline in our system during these stressful timeseven without POTS. Feel better. Martha

Dear Persephone, Sorry to hear that you're feeling so unstable presently. I am one of the "older" people on this forum having developed POTS at 49 1/2 years of age after a nasty viral infection. I am of Scotch-Irish and mixed European heritage and visited Scotland for the first time about 5 years ago. What a gorgeous country! I wonder why my ancestors left. I was incredibly ill for almost 2 years (practically bedridden for the first) and have improved extremely slowly, but still have POTS. I have had to adjust my expectations about what I can and can't do over the last 3 years. Drinking a lot of fluids (64 ounces a day) helps a lot but doesn't cure the symptoms for me. My docs were afraid to put me on a lot of medication because my BP is all over the place and they didn't want to stroke me out. The one medication that has helped control my tachycardia is Xanax, controversial for some because of it's addictive qualities, but I haven't found that to be the case for me. I was also on Neurontin for a long time because of terrible headaches and have recently been able to taper almost comletely off of it. I have also heard that ablation is not advisable just for POTS alone. Doing some leg strengthening exercises has helped me with the blood return to the heart and gentle Yoga stretching on a mat to a DVD tape is somewhat centering for me as well. Watching my diet and not overeating helps me too. I hope that you will also improve somewhat over time. Take care, Martha

Stacey, so sorry to hear about your continued problems with your Dad. I am praying that things get better for you and your family. Martha

Ernie, in the letter many issues are alluded to including limited resources (money, space, reports, volume of correspondence), complexity of the disorders, safety issues with temporrily discontinuing treatment before and during the study,lack of a therapeutic trial, and competition with other protocols. Tearose, your thought that the study may be discontinued also crossed my mind. I hope not because NIH is such a reputable research facility. Martha

I received a form letter yesterday from NIH detailing the difficulty evaluating patients under this protocol and how I have been placed in the "hold" pile at this point in time. Needless to say, I am disappointed as I had been pre-qualified for the study, and apparently many others were as well. I am still hopeful that some answers will be found to help us deal with this "often debilitating, frustrating, multi-system disorders" Martha

VERY INTERESTING! My mother and my brother and my sister have pectus excavatum, but I have POTS and they don't..No tradebacks I'm afraid. Martha

Mary and Opus, I am also sensitive to carbohydrates. I have tried to follow the diabetic diet I was given over 10 years ago after developing gestational diabetes (went away with delivery) with my last pregnancy. When I follow it I do feel a little better, but it is so limiting. I also react to stimulants such as spices and caffeine (even in iced tea!) I am going to look for your book Protein Power. I followed South Beach for a while and that was a good thing too. I have to eat very small meals as well. I never feel full. Bummer. Martha

The Social Security System is what it is, but I agree with Sophia in the lack of interest of most autonomic specialists in how this condition affects our lives. I know that many chronic illness clinics in major medcal centers have a social work department and other team members attached to them so that a patient has a full complement of services and the physician is free to pursue just the medical aspect of the illness. I thought that I would be treated better by an autonomic specialist I saw after diagnosis, but they make you think that you're just complaining about nothing when it is truly life-altering. Martha

A tiny dose of Xanax (prescription) has helped me somewhat in those situations that are over-stimulating such as a trip to a large, busy store. Martha

Good for you! I think the very cold temperatures are less bothersome than the very hot ones. I find that I have been able to shovel a little snow on occasion but can't rake leaves on a nice day in autumn--go figure. Just being able to do something you previously enjoyed before POTS is so reassuring. Martha

I think your neurologist was right. I am sure that my pronounced dizziness (and balance issues) are from my blood pressure fluctuations as well. I also spilled my cereal this morning after getting my son his bowl, and I realized that I was having "greying out" at the time. I am also curious to know how your BP issues would be treated because mine are very similar. I never know when to add salt or just have extra flluids. Martha

Thanks for posting this great information. I have yet to have my urine methylhistamine levels tested and think that I should. I definitely reacted very poorly to beta-blockers. Martha