Jersey Girl

Hi! I attributed alot to "fibromyalgia" that was never really diagnosed but I just assumed I had it. Now I found out that I had bone spurs in both my shoulders where the nerve was hung up and caused me great pain with my rotator cuffs and had surgery on both of them and some of that pain and tingling is history. I am having an MRI of my knee next week because flatplate X-ray said torn meniscus. So don't assume fibro. Martha

That weekend would most likely work for me. Martha

Oh Manhattan sounds great! I would also love to put a face with a name. On Sunday mornings we often find free parking on the street to visit with my daughters who live together there. Definitely count me in, Martha

YES..YES...YES I had terrible 'spinning sensation" all the time when I first became ill and saw ear specialist who couldn't find anything and told me that I must be very stressed. Then I failed the water in your ear test as well and was sent for rehap training with little improvement. I am also more symptomatic related to hormone fluctuations and definitely have bradycardia as well at times. I think I need a monitoring device to see if it is related to a slower heart rate at times. Interesting observations. I get nerve pain in my left ear frequently still 4 years later and have had my ears checked numerous times so know it is not otitis. I never had ear infection in my life. I had my legs "give out" too when I was first ill. I still get the spinning sensation at times and can only lie down and wait for it to pass. Martha

Dear Linda, I am so sorry that your symptoms are so severe right now. When I was first ill 4 years ago, I tried everything and looking back over the years, I think the only thing that helped initially was staying in bed and sleeping alot of the time, taking neurontin for my severe headaches,stiff neck,chest pain, and other assorted aches and pains. I had to very, very, gradually learn how to walk again on my own by hanging on my daughters arm and walking the driveway extremely, extremely slowly until my tolerance grew day by day over 1 1/2 years. Only then was I able to try some exercises such as swimming and exercise machines to strengten my leg muscles. I watched--actually listened to alot of television because my eyes could hardly stay focused on the set. It really stunk. I was encouraged to do more than I was actually capable of before I had a diagnosis, but was glad that I took the time resting in bed trying to give my body a chance to heal itself. I took B-vitamins and tried acupuncture and massage therapy to help me deal with the symptoms. I was hoping for the "cure" but had to settle for a temporary improvement in symptoms with such. I had to hang onto the hope that someday I would be "better" and I still do. I have had improvement over time (the best one can hope for with this crazy condition) and am thankful for less intense symptoms. I am extremely appreciative of this forum to help me cope and know that I'm not alone. I really hope that you will find some answers to help you. I had terrible reactions to just about every medication that was tried as well. Martha

Hi there! I have been going through similar issues the last few years. I have had two d&C's which were done very quickly under general anaesthesia. I told the anesthesiologist that I was most likely to volume deplete so they increased the IV fluids for me and got extra time in the recovery room. I was hesitant to try the newer ablation procedure because I believe it involves very hot water and I react poorly to temperature changes. I couldn't tolerate any of the perimenopausal hormone treatments I tried and have been in the waiting game for my cycles to finally end. Sorry you are facing this now. Martha

I'm sorry to say that I had and still have somewhat this same left sided weakness that started during the acute phase of developing POTS about 4 years ago. I even have a slight left sided face droop and I was initally told I had a stroke, but after repeated negative nuclear scans over months and the fact that I had stiffness of my face develop over the period of a few days led a very learned neurologist to say "you didn't have a stroke" but "I don't know what caused it", probably a virus. I even feel like I am dragging my left leg when I walk which isn't particularly noticeable to anyone except when I am tired or stressed. I feel like the left side of my backmuscles also goes into spasms and knots at times and tranfers into my neck mucles as well on that side. Swimming seems to minimize some of these symptoms at times if I don't overdo it. Martha

I have tried many kinds of compression panty hose and they all give me a stomach ache! I have been in a restaurant and my husband has ordered me into the restroom to remove them because he knows I can't eat with them on. I am a big fan of knee high thick athletic compression socks I got onlineand they hold up in the wash. I can't bear to have anything constrict around my waist. I have tried abdominal exercises using a large rubber ball (using a videotape called "Total Body Ball" by Bollinger). Using a ball, the exercises don't strain my back and I believe the tightening up helps somewhat. This tape also has exercises to tighten up your butt and thighs using a large rubber ball. It is the easiest kind of exercise I have tried and doesn't set off the OI too much. A good part of the tape has you fairly horizontal--good for us! Martha

I have this with reading as well. I used to love to read but have found it difficult in an upright position and will become exhausted. I have even tried lying flat in bed to read but this is difficult. I think sometimes the eye movement is bothersome and different lights, i.e florescent make symptoms worse. Martha

I had a severe reaction to Relafen--one of the newer NSAID'S--that landed me in the hospital for a day a year before developing POTS and since POTS have been unable to tolerate even Advil. Do you have an epi-pen for true anaphylaxis or are you just very reactive? I have both issues with different meds. Martha

I am also extremely sensitive to any perfume-even before POTS developed. I also had dry eye syndrome after wearing contact lenses for many years (don't now) so I haven't worn eye makeup for years. Martha

Yes! I get this too with standing. I take it as a warning sign that I am more symptomatic than usual .I often have to lie down because of stomach aches. I also get dizzy pratically every time I get a meal. Martha

Hi! I wonder if you hadn't already developed POTS when you were initally diagnosed with the anxiety disorder. Xanax was actually recommended for me by the doctor for occasional use when I was finally diagnosed with POTS. I can't take beta blockers so this is a good alternative for me to slow my heart down and it seems to make me less reactive as well. However, it is highly addictive and you should be under good medical care. Martha

I also passed the rotational chair test but failed the ENG. The neurologist at the time tried not to make too much out of it because he couldn't explain the results--this was prior to my diagnosis with POTS. Martha

I get the same feeling below my left ear as well and I agree that it tends to precede a period of time when I will be feeling worse. I'm not sure it it is just muscular because I have had some shoulder issues, but it was there from the onset of my POTS too. I actually failed the ENG part of the test given by the audiologist, but at the time I as told that it wasn't significant--not significant for the physician, but it sure was for me! Martha

Dear Dayna, I'm so sorry that you are feeling so miserable. I know that when I get really, really in bad shape it usually seems to be from hormonal fluctuations or weather low pressure systems and it doesn't seem that there's too much I can do about it, but wait it out or take Xanax for me. I hope this finds you better. Martha

I get tachy even from unsweetened ice tea. I can't tolerate the coffee, even the decaf, but I agree that it smells heavenly. I have been drinking decaf tea, like ginger and peppermint and decaf English Breakfast. Martha

Hi! I was just in Littleton for a wedding this past weekend--Canyon Ranch area--and ended up lying on a bench in the food court area of Denver airport before my flight home. Welcome! Martha

What you described sounds like what they did to me, but I honestly blocked out alot of what happened that day because I was feeling so crummy. To me it was like what I would imagine being electrocuted would feel like, but I was so ultrasensitive to any kind of stimulation then. I began to scream because of the pain, so the physician became angry and had to stop the test. I still have numbness on my left side that only went away for the brief time I was on Florinef (over reacted to that medication too!) Sorry I can't be of anymore help on this matter. Martha

I had nerve conduction studies on my left arm that had to be prematurely stopped because they were too painful. I still have symptoms though. Martha

Good Topic! I also have found it difficult to balance what types of exercise I might attempt in a day or week. I agree that the walking seem to cause me the least distress if it is not too hot, lately not so. I envy anyone who might be able to mall walk because I am still subject to overstimulation in the stores and find my tolerance to be about 10 minutes before I need to use the john urgently. I have started some easy water aerobics in a class and not only is it fun (which I have found is in short supply with this illness) but it is somewhat stabilizing for the time I am doing it and shortly thereafter. But it is important to remember not to throw out the baby with the bath water because I have to do some kind of exercise as well to keep all those veins doing their job. This past Monday I just had an injection of cortisone in my left shoulder as I have been experiencing pain and discomfort in my neck, shoulder and along the upper spine too. I was diagnosed with shoulder impingement and cervical sprain and sent for more physical therapy. I don't know if you remember but I had right shoulder surgery to relieve calcific tendonitis and frozen shoulder this past February. After 5 months of therapy on the right shoulder I am almost use it normally, but more importaantly, the constant pain has really subsided. I was told from X-ray that the calcifications in my left shoulder were "fluffy" and considered a normal finding, but the muscle spasms and pain with using my rotator cuff are not normal. I am hoping the PT will help as much with the left as it did with the right. They use electric stimulaltion and ultrasound on those spasmed muscles besides the exercise program and manipulaltion. I hope you get some relief soon and can find exercise that doesn't aggravate your symptoms. Martha

Welcome! I also had stroke like symptoms. I was initially sent for repeated MRI's, MRA's and MRV's because the docs were so convinced in their own heads that it couldn't be anyting else, but I finally went to a highly experienced adult neurologist who said no way I had a stroke and was eventually (almost 2 years) seen by a dysautonomia doc. These symptoms are so worrisome. I was on blood pressure medication (calcium channel blocker) for about 8 months at one point because my BP was all over the place but generally high. I was in constant pain and was non-functioning. I have been making turtle-speed progress with massage, stretching exercises and swimming over the last year with many setbacks. Martha

Where is the autonomic center in alabama and what type of yearly followup do they give you? I might be missing out on something! Martha

Sorry you had such a bad experience. When I had full-blown POTS with horrible chest pain and shortness of breath (POTS that was undiagnosed) I was in such a sorry state that I was put on oxygen and IV's in the emergency room and it did help! When the medical community has nothing to offer I notice that it is often easier to attack the messenger than the message. I don't know why they can't be more empathetic even if they can't offer you anything. I believe they don't want you coming back if they have nothing to offer. I agree that Mayo is more of a diagnostic and research facility. I think a little exercise over time has had the most positive impact on me. That being said I know I couldn't have attempted much the first year and it is hard to get started with even the simplest activites initially. Have a better day tomorrow! Martha

I had my job held for me for a year also. There was no way I could go back to it and I'm glad I didn't even try because there has not been one day when I could have made it through a work day. I could barely make it out of bed the entire first year! In the meantime, I've been able to keep myself focused on recovering. I do miss working also. However, I am also somewhat older (52) than I suspect some of you are, so I am truly worried about the stress of POTS on this old heart of mine if I push myself too hard. Maybe if I was in my 20's I would feel differently. Martha