nantynannie

Hi Barbara, Except for the wheelchair, you described many of my symptoms in your story. I had a cervical spine injury in 1990, reinjured in 1994 and 1996. Now I have "mild cervical canal stenosis." I know that the sympathetic nerves run down the spine and I believe that my cervical injury is responsible for most of my health problems. This is a great forum and you will find many knowledgable people here... Ann

Rahda, Beta blockers should work, but of course, you have to take the big picture into consideration. Are you taking any medications? Ann

Hi Everyone, Just wanted to let you know in case anyone is interested, I found a portable stool today that is very cool. It is light weight and it is a backpack, so you can carry it over one shoulder and carry stuff in it. It opens up very quickly (.5 of a second) into a small fabric stool and it is comfortable. There is no fiddling with anything, as soon as you take it off your shoulder and set it down, it opens up. This stool is made by ASICS and I found it at Sport Chalet for $24.99. You could probably get it over the internet. It was so great today to have a seat whenever I needed it. Don't get me wrong, I would rather not carry a backpack, but the trade off was definately worth it! Ann

Very Blue, What part of California? I found a doc at UCLA who specializes in dysautonomia and sleep disorders. Her name is Frisca Yan-Go. Ann

Hi Radha, I also have this problem, though I don't get anxious, just highly irritated. Ann

Hi Paige, I had no idea that you were not able to drive. I am truly sorry about this, it must be a great burden to be forced to rely on others for transportation. I wish I could help... Ann

Hi Paige, My reply is in no way meant to minimize your feelings...I also feel the way you do, some days I am more upset about it than others. On the bad days when I catch myself in those moments I try to be thankful that I am in possession of all four of my limbs, have my eyesight and I am not on a colostomy bag. I also try to remember the people who have total autonomic failure and are much sicker than I am. I am so grateful that I don't have that. It helps my mood to think of these things, because it puts my situation in a better light it seems. It does not last forever, but makes me feel better at the moment... Ann

Hi Nina! I probably already asked you this...what kind of meds are you on? My doc did not treat the hypovolemia, he said it was not enough for the medicine and also, it can cause hypertension, which I guess some of us already have... Thanks, Ann

Hi War Eagle, Before I knew about the POTS I had an injection for a root canal that sent my heart rate through the roof and left my whole body numb. The dentist rolled out the oxygen cart! Well I was just there again for a crown and he gave me some anesthetic that DOES NOT CONTAIN ADRENALINE...it is very short acting and he had to give me multiple shots, but I had no reaction. Maybe you can ask about this. Ann

Very Blue, I wish it was that easy! I have a reduced blood volume of about 22% RBC mass, 12% plasma and 11% total volume. Many people with CFS (which I have) are hypovolemic. The cardiologist and my immunologist both said that this is not enough to cause the POTS symptoms. I also get high BP when I stand, but eventually (25 minutes during tilt) it drops. I can actually watch the blood pool in my hands. They turn a dark purple color within 30 seconds of being down at my side... Ann

Hi Radha, I see that you already have quite a few responses, but wanted to add my two cents...Like you, I also feel like I am going to jump out of my skin sometimes. It feels like too much adrenaline. Yes the leg shaking sometimes helps, sometimes it is not enough and I get up and pace a bit. Another thing that helps is I tighten all of my major muscle groups to take away some of the tension. It is absolutely impossible to concentrate or pay attention to anything during these episodes. Just FYI, the beta blocker (Coreg) I was on made this symptom much worse. Are you on meds? I do not have ADHD, but I have often thought, "This must be how it feels to have ADHD." Ann

Hi Everyone, I am not sure if this is at all related to dysautonomia, but thought I would ask anyway. There have been a handful of times that I have punched myself in the face in the middle of the night while sleeping. It is like a reflex, but my arm contracts with enough force that it feels like a punch. It is weird. Anyone else? On a side note, I also have muscle twitches and restless legs at night. Not sure if it is related. Thanks! Ann

Hi Jessica, No thanks necessary. You did the right thing! Ann

Hi War Eagle, I see that you have already gotten a lot of good advice, so I will keep it short! I was wondering...what was abnormal on the tilt? I am just curious about this because it is distressing that though you had an abnormal test, they rx'd anxiety. That is very frustrating! Anyway, the only thing I can add is that some people (not all) seem to improve over time. The others learn to cope better over time, so either way, I am hoping that time will help you. Ann

Hi Sarah, I also get this electric shock type feeling from the base of my neck into my head. It happens when I move a certain way and is hard to duplicate. In my case, I have a bone spur and disc protrusion at C6-7. When I move a certain way, it hits the spinal cord and generates the shock. I think certain types of neuropathy can also cause the shock. Ann

Hi Mary, One thing that helps with cramps is a combo of calcium and magnesium. I suggest the kind that dissolves in water because it absorbs easier. Some people add potassium also. Try CALMAC by Nutrina or something similiar. Take it before bedtime because it can make you sleepy. Just FYI, the pills do not work as well as the dissolving powders. Ann

Hi Blackwolf, I have the same problem. They use a "baby catheter" and always have trouble for the IV and for blood, though I must say that 14 times blows my record right out of the water!!!! They always try to say that I am dehydrated (not true) or that my veins "roll." Whatever the case, it leaves them digging every time they miss...I can tell you that when you are truly dehydrated as you mentioned, it does make it more difficult to get the vein. Why are you dehydrated-are you okay? Ann

Jessica, If you have health insurance, you should get an MRI of the low back and pelvis to see what is causing the back pain...that is of course, if the gyno comes up with nothing. The only other thing that I can think of is that the kidneys are there, but if you are not having any other kidney type symptoms, then probably not. Have you had an xray? Very little shows up on xray of the back, but it is low cost and is sometimes effective. Ann

Hi Jessica, Generally speaking, Fibro is characterized by "widespread pain in all four quadrants of the body." The fatigue could be the POTS, but with the other symptoms it does sound like you could possibly have something related to CFS like you said. Many docs think that Fibro and CFS might be two manifestations of the same condition because so many of the symptoms overlap. What kind of tests have they done for your back pain? Is it low back? Ann

Hi Carol! I hope I did not give you bad advice when I said that your doc probably thinks your nuts...since no one else took it that way, I was probably just projecting my experiences on to you. Many of my docs think I'm crazy! By the way, I have had good results with hypnosis (kind of like biofeedback) for behavior modification. I did not have sucess with it for health related issues though. Please let me (us) know about the book and whether you get any good tips or info. Take care, Ann

Hi Sue, I am sorry that your test was cancelled and that your results will be delayed because of it. About the numbness, I was wondering...do you have back problems or is this related to dysautonomia? (if you know) Ann

Hi Very Blue, I get pounding "hangover type" headache near my temples when I stand up, especially when getting out of bed in the AM. It usually goes away after a few mintues, but comes back when I stand up again. I almost always have a full blown headache (that does not go away) by the afternoon and I do not stand all day at work like you do. I am almost always sitting unless I am going from one place to another. Sorry this is effecting your work. Headaches suck! I cannot tell you what is causing them, maybe someone else can help. Ann

Hi Guys, I am just curious about this because it seems that many of us have been RX'd with Fibro. So many of the Fibro symptoms seem to be related to dysautnomia and I know that there has been research in this area. I hope I did this right! Ann

I was also supposed to be on 12.5 of Coreg (never got that far) but maybe it depends on the medication? Ann

Melanie, I forgot to say that there is also something called autonomic neuropathy. It can cause the pain you are talking about. If your doc thinks it is related to POTS, maybe he was talking about this condition. Ann