Traci

I mentioned that I was getting forehead numbness, a strange feeling a while back. Presently when I stand up or sit up, I am experiencing this numbness, tight feeling throughout my forehead, nose, sides of my face, around my eyes and scalp. My scalp also feels dry and itchy. I can actually feel the tightening in areas as it is happening. Eating also makes it worse. It seems to be getting worse for it doesn't go away while I'm upright. I've been spending alot of time lying down. When I do lye back down, I feel a pressure feeling throughout my face and scalp. My eyes also feel more wide open. Traci

Hi Claire When I was recently at Mayo, I had my 3rd tt test. It turned out fairly normal, my hr went from about in the mid 60's to about 100-105, from what I was told and remember, for I haven't received my results back yet. My bp stayed normal. Later on in the day, my Hr hit 130 on standing. I'm starting to think some of these tests can be decieving. My last tt test My hr went up to about 100, but my bp had a dramatic drop, so they put me down, even though I really didn't feel faint. During my first TT test, my hr went up 50 beats to 130 fairly quickly, but my bp remained the same. Different results on all three test. Even though my last test had the best results, my symptoms are worse. I've come to the conclusion, that at any given time our bodies are doing so many different things that during a nine minute tt test, who knows what will be happening at that time. My hr jumps all over the place. Nobody can predict when it is going to be happening. Although I wish more Dr's would understand this. I woudn't worry about it. Traci

Hi eveybody, I hope everyones well, I have some questions Recently I have been experiencing a numb forehead, especially if I have been upright for a while. When I lye down it goes away. I also feel the blood flow rushing back to my head. Most of the time when I am upright now, my head starts to get heavy, I don't faint I never have, but I do feel a heavy tight feeling, with shooting pain in my head, eye and neck. My eyes also feel heavy and they get droopy and it's not from the myasthenia. The pain to me feels like vasoconstriction, but I was told you can't feel your blood vessels. Again when I first lye down, it slowly goes away, and I feel the flow/pressure feeling again in my head. Also I am getting this right sided heaviness, I figure the heaviness should be on both sides, but no with me, it's on the R side. My left side feels so light and it looks thinner at times than my R. I know it sounds strange. When I sleep at night, I am pooling in the lower half of my body. I thought autonomic problems were only suppose to happen in the upright position. Also, I know I have talked about my eating problems before, which are still occuring, but worse. When I eat my stomach feels like it is going to pop. The rest of my body, even my legs, gets cold, pale and I get shooting pain. It's like my blood is leaving other areas and going into one place. They may try this medication called octreotide if it gets worse, but I'll have to think about that. I was just wondering if anybody else has experienced any of these symptoms, for I have been quite worried about them. Traci On a sidenote, I recently got back from Mayo, they had previously diagnosed me Autonomic Neuropathy, I asked my Dr. what he meant, he said Pots and OI.

Melissa, I hope you feel better soon. My prayers are with you. Traci

I've had positive ANA's. It's not surprising since they think my autonomic neuropathy is due to my immune system. Traci

Hi everybody, I'm presently at Mayo getting testing done. I don't know, I seem to just keep feeling sicker, with more symptoms. I'm not sure if they are all from Pots. The latest symptom is skin dents. I've been getting them all over my body and they are taking awhile to go away. Any type of pressure seems to be causing them presently. Has anybody else experienced anything like this? My testing should be all done after tomorrow. It's been quite trying. Thanks Traci

I get a real heavy, pressure type of feeling in my chest. I lye down when it happens. Traci

I'm having big problems after I eat. My stomach gets so big. My veins disappear on my limbs. I get pain all over even on my face and neck, also my legs, arms, shoulder and back. My body feels heavy and tight from head to toe, like it's difficult to move. I get tachy after I eat, although it seems like I am tachy most of the time these days if upright. I also get cold after I eat. I've lost 15 pounds since I've become sick, I really can't afford to lose anymore weight, for I was fairly thin to begin with. It's a real concern, for eating has become so difficult. Does anybody else experience these types of symptoms due to eating. Traci

Bamagirl I also had the sweat test done at Mayo. My sweat test revealed a small fibre neuropathy in my R thigh, my forehead and both my feet also. Patchy areas on my thigh and forehead. It's good that you got some answers and at least ruled out some of the possible causes. Traci

Nina that's interesting, for the mornings, and sometimes when I get up from taking a nap, is when my BP can be on the higher side. When I stand up. Also, sometimes after I eat. The opposite seems to be happening to me at times. Traci

I have shooting pains. Mine are all over my body. My legs, arms ,back, neck, stomach etc. Lately they seem to be happening alot more often. I've told the Dr., but he doesn't seem to have a clue why it's happening. Traci

I've noticed with some of my symptoms they settle down a little at night, before I go to sleep. Not all of the time, but I get a few semi-normal nights in a week. My HR can even settle to a high normal on standing at night sometimes. But 50% of the nights, before I go to sleep, they settle a bit. Although, after sleeping for a while and when I awaken, my symptoms are at there worst. Most nights, before bed, are alot easier than the mornings. Has anybody else noticed a certain time of the day where their symptoms lessen and is it in the evening/night before bed? Traci

Well, I called my Doctor about my latest symptom. He seemed a little irritated that I called him and really didn't know what to make of it. He kinda chalked it up to anxiety. Of course I feel anxious when I feel like I'm not getting enough air in and getting neck pain upon awakening, which has now turned into face pain as well. My HR has also been all over the place lately even on a BB. I let the Dr. know this also, but not much of a response. I'm going to see another neurologist tomorrow, but this one is not very familiar with the autonomic NS. Hopefully it'll just go away. Traci

With the strangest symptom. It felt like I was suffocating when I stood up and my neck felt tight with a little shooting pain going up it. When I lye down the suffocating symptom goes away, but when I stand back up, it comes again. My heart was racing, it still is. I'm scared. I just saw my neuro yesterday and I feel like such a pain calling him again over every symptom. Traci

I get the round flashing lights at the outside corner of my eyes. These were one of the first symptoms I got when I started to get sick. I still have them when I am really symptomatic, which is virtually all of the time presently. I don't know if this has anything to do with dysautonomia, but I've always wondered. When I first got these round lights, I was sent to a retina specialist. I had a torn retina, which they repaired with laser surgery. I kept experiencing these lights and had ended up with another torn retina, same eye. Even though the flashing lights persist, I haven't had another torn retina...touch wood. I also have been getting alot of floaters lately. They come and go all day long. My retina specialist is somebody I have been seeing on a regular basis. Traci

Does anybody pool more on one side of their body? I pool in both my arms and my legs, but for some reason my right side seems to be affected alot more than my left. Does anybody else experience this, or is it just one of the strange symptoms I'm experiencing? Traci

Thank you all, for your kind words. This forum is a great support system. I'm still not feeling well. I don't know, I just keep feeling worse. I'm hoping it has to stop eventually. I saw my neurologist today, they have decided to send me back to Mayo. He said I have symptoms that he understands, but I also have alot of symptoms that he has never heard of. It's kinda scary hearing this from him. I guess POTS symptoms are quite specific. It's going to be tough traveling to Mayo feeling so unwell, but I guess I have no other choice. Katherine, that feeling of pooling and pain all over, did you ever get it after eating? These days I seem to have alot of trouble eating and stabilizing myself in the am. I'm trying to keep a positive attitude, instead of staying in the why me phase. Traci

I haven't posted in a while, for I have been so sick. I started the plasma exchange in November, I had about 5 exchanges and started to feel better. Around Christmas time I started to feel very sick and it hasn't let up and keeps getting worse. So, the Dr stopped the exchanges after 10. I don't even know if that is enough exchanges to help treat the symptoms or whether the exchanges should have been stopped. The Dr. that started the exchanges is a neuromuscular specialist. I thought I was gettting better and then I just went down hill. I'm tachy everyday again, even on the Beta blocker. Everytime I stand up or sit up I am gettting shooting sharp pain all over my body, my legs, chest, arms, back, neck. It almost feels like I am pooling everywhere and the pain is coming from the constricted vessels that aren't getting enough blood through them. Has anybody ever felt this symptom? I'm also having problems eating, I start to feel the sharp pain everywhere again everytime I try to eat a meal. My BP is also going high on standing at times and I feel a heavy feeling in my head and torso. I'm having a funny numb feeling in my jaw and R side of face, they did a Ct scan and everything was normal, but this symptom persists even when lying down sometimes. The Doctors have now started me on Potassium supplements, for some reason my potassium has gone very low. I feel like there is no end to all of this. Right when I was starting to become hopeful, it was taken away. I feel so sick and discouraged and am starting to suffer from anxiety due to all of this. I'm sorry to rant like this. I was hoping to bring positive news. Traci

Hi everybody, It's been awhile since I last posted, for I was hospitalized again. I went to Mayo just over a month ago and I just found out today that I tested positive for the ganglionic acetylcholine anitibody, as well as the other achr antibodies that I was previously diagnosed with. I started plasma exchange, I've had 5 exchanges so far. I feel like I have a little more strength, but my autonomic problems are still fairly heavy. They say with my myasthenia the plasma exchange should help right away, but with the autonomic neuropathy it'll take awhile. I guess I'm going through alot of different emotions presently, for most of the Dr's where I live thought I was a psych case, even a highly regarded autonomic Dr wouldn't help me. Luckily I went to Mayo. I have my fingers crossed in regards to the plasma exchange, I'm also now on cell cept and prednisone. I feel like a walking drug store. What I am going through seems to be all caused by an autoimmune response, Dr Fealey was right. The exchange itself is tiring. It also lowers my bp, but I can obviously live with that if it helps me in anyway, I'll keep you all updated, for I'll probably be continuing on with plasma exchange for awhile. My Dr said in a month I should be feeling better. Traci

Thanks for the reply Margaret, I have seen Dr. Stewart a couple of times, but presently he is on holidays until mid December. Without him here, it's a worry, for my symptoms are increasing. My biggest problem is I feel like I'm constricting to death, I know it sounds strange. I don't pool that much in the legs, they feel constantly cold now. It feels like all my blood flow is staying in my stomach or at times arms. Sleep has been very difficult, for the pain that I use to feel with the headaches. I am feeling in my torso. It makes me think while I am dilating in my abdomen I am also constricting in areas. My Bp hasn't been super low, but it feels like my blood isn't flowing properly. Especially on my r side. MY head feels heavy on the r side or light and normal most of the time on the l side. It's kinda scary, for I don't even know if this is normal for autonomic problems. And I am always so cold. I can't stay out of the bath tub presently. Also when I stand up from sleeping I can actually feel the flow of my blood going up my body. I don't know, it seems like I am so intuned to the things that are happening to my body. Sorry for the vent. Did you go see Dr. Rangno. If you did, was he helpful? As for the plasma exchange, I got a call from VGH today and have an appt. to talk to their Dr. about it on Monday. Hopefully it'll work and won't cause problems due to the blood flow problems I seem to be experiencing lately. Traci

Presently it feels like I'm living in fear with alot of anxiety now, 24 hours a day. Some of my symptoms make me wonder if it is autonomic or something else is going on. Than the symtom goes away and something else starts. I can't seem to get out of this horrible cycle. I guess I am going to have to gain some new coping skills. I use to meditate and do alot of yoga, but my mind has been so bogged down with the symptoms, that I haven't had alot of focus. Traci

Ooops I didn't see this topic, before posting the other plasma exchange one. Sorry guys. So plasma exchange musn't be harmful for people with dysautonmias. I don't know about my ganglionic achr receptor anitbodies, but my achr antibodies are high. How interesting. I wonder if this will help me. The doctor today told she's going to try to get it started next week. I'll keep you all informed if it helps. Traci

I don't know if vertigo is a symptom of Pots, but I have had it in the past. One episode in the summer time. It was very hot out and I was sitting in a position with my legs up. It felt like all my blood flow had gone to my head and neck area. When I got up to walk, the vertigo kicked in, I needed help to move. I lyed down flat for about an hour and it went away. Traci

I had a visit with my neuromuscular Dr. today. They are still trying to figure out where all my muscle has gone and why I am so weak She wants me to have a muscle biopsy, to look for mitochondria disease etc. She also wants to start me on plasma exchange therapy next week, for some of my antibodies are high. So they will be taking out the old antibodies and putting in good ones through plasma, I guess. I guess I'm a complicated medical delimma. Anyways has anybody heard of this? And if they have, do you think it could be a problem for people with Hr, bp, blood flow problems? I hope not, at this point anything that will give me some energy is welcomed . Thanks Traci

Presently, all I can do for exercise is walk, although for short periods. Any other type of exercise, causes pain for me. I know where your coming from when it comes to the Doctors. I don't think some of them understand how difficult it can be at times. Traci