Traci

I have alot of vision problems. At times my eyes feel unfocused also. I also get light sensitivity, but not as bad recently as in the past. And the odd time I will get eye pain. When I get the light sensitivity, I'm always squinting. It's not exactly a comfortable feeling Traci

Hi guys, It's been a long time since I have posted, for I have been feeling quite ill. I've been diagnosed with Autonomic neuropathy and myasthenia gravis. I'm still not sure if I have been correctly diagnosed. I've just been hoping I'd wake up one morning and all the symptoms I feel would go away. I am getting symptoms as usual that no one has heard of. It seems like my blood flow slows down quite a bit while I'm sleeping. I'm only able to get about 5-6 hours sleep at night, before I am awoken by strange sensations/pain throughout my body and have to walk. Also, I get alot of shooting pain in my torso, chest, underarm and back especially. The areas are sore to touch. This happens especially if I am sitting at rest for too long or lying at rest. I have to move and the pain and sore spots then go away. Also my right side never feels normal, especially my head. I have boughten compression hose, which do make me feel a little better, but cause a great deal of leg pain. Has anybody else experienced these types of pain symptoms? It almost feels like my blood flow slows right down at rest, or maybe it's pooling and constriction in other vessels are causing the pain. I don't know, but I'm quite concerned about these symptoms. Traci

Hi Margaret, I just came across this post. How did your appointment on Aug 31 with Dr. Stewart go? I have an appointment with him on the 21st of September, next week. I've got my fingers crossed that he can help me. If he can I certainly wouldn't have to leave the country then, which I don't want to do, nor do I even feel well enough to do. At this point I feel a little desperate. My symptoms keep getting worse. Thanks for your reply Traci

Hi everybody It has been a while since my last post. I've been having all kinds of different problems and my Dr's still really do not understand the symptoms. So I have now booked an appointment at the Mayo in Arizona. I was just wondering if anybody knows how good this clinic is. The one in Arizona is closest to me, I'm just hoping they deal with the types of problems I am having. Has anybody been to this clinic? If so, did you benefit from it? Hope everybody's well Traci

Thanks for all the replys. I would have responded sooner, but I just recently got out of the hospital. They holtered me and saw that my HR was all over the place, so they started me on a beta blocker. I seem to keep getting more symptoms. I've most recently have been experiencing weak eye muscles, funny face and head feelings. Also before I would only dilate too much, now I seem to be going back and forth to dilating and constricting. I don't know if this is normal for people with pots. Does anybody else have this type of problem? Margaret, was Dr. John Stewart helpful, and yes I do live in the lower mainland and would very much appreciate it if you could recommend me to some docs. Traci

The specialist said he'd give me a beta blocker, but I am an asthmatic so he couldn't do that. Other then that he offered no other meds to lower the hr. He mentioned that he thought it was due to deconditioning. How can I become conditioned when I can barely stand up for more then a couple of minutes. I told him that right before the increased HR and the standing problems started I wasn't this deconditioned, I was able to jog a little and still do yoga. Then I became imobile due to all the problems. Traci

The Doctor that I saw today is in Vancouver, Canada. I really do not know what to do now, for I'm living a dysfuntional life with bp and hr problems along with other symptoms and nothing is being treated. I've been positionally trying to manage my symptoms on my own, but the symptoms have increased and are just too hard to manage on my own presently, especially the weight loss and lack of sleep due to odd feelings in my arms and head. Traci

The test took probably about 5-10 minutes at a 70 degree angle. That is the only testing he did and no he didn't do any medication testing. What is the medication testing? I don't know, I mentioned to him that I thought the bp didn't have to go low, but he was positive it did. Unfortunately he said he didn't need to see me again. I think he is the only autonomic Dr in my city. I sure hope he is right. Traci

He did the tilt table test. My heart rate increased about 50 beats but my bp stayed the same. So he ruled out an autonomic problem. I don't know how I feel about this for my hr and bp have been all over the map lately. I didn't know that the bp was the big factor and it had to be low. I still feel so many different symptoms like difficulty standing and sitting up, excessive thirst, nausea, blood pooling, loss of circulation, hr and bp changes etc. I'm kinda discouraged for I don't know what to make of this Dr's opinion.

I spent last night again in the emergency room. They didn't know what to do so they gave me an IV throughout the night. The Er Dr was ready to admit me last night, but then another dr who came on in the morning decided against it, for I have had too many tests already. He decided to do a psych consult, which I did, and I passed. One positive is I got a hold of the autonomic specialist today. There was apparently quite the waiting list, but he came on the phone and talked to me personally and he decided to see me on Thursday morning. Thursday can't come soon enough for me. On a sidenote, I've been experiencing this weird feeling on and off thoughout the day, with BP and HR increases. It's like a rush throughout my body that even goes through my head, it is awful. I also have sore spots on my back, which when pressure is applied I feel a funny feeling radiating throughout different areas. Has anybody else experienced this? I hope all is well for everybody. Traci

I don't quite understand the report but it states- The test for anit-neutrophil cytoplasmic antibody by pANCA was strongly positive. It also stated my ANA also had nucleolar pattern. Traci

Thanks for the advice and support. I just feel, well most of the time these days, that I am falling apart. My symptoms seem to be getting worse. While standing straight today, I feel an out of it feeling and pressure in my head along with nausea, dry eyes and severe thirst. Also I've been getting this terrible achy feeling that is absolutely undescribable. It makes me feel like I am going to jump out of my skin. Hopefully going to see the Dr. that deals with autonomic problems will relieve me of some fear. I've been drinking alot of fluids, but I'm a little afraid to over do it, due to the blood pressure going high. On a sidenote, I saw a Dr today that actually understood my symptoms. He's a gp and can't do alot about them. He also noted that I have a high ANA with a certain type of antibody present. I don't know if this has anything to do with dysautonomias. Traci

I feel like I am going a little crazy, mainly due to Dr's responses to me, and of course my symptoms. Last night I went to the emergency room because my BP was high and of course my heart rate was high. They did an ekg, which turned out normal of course. They then concluded it to anxiety. I may be having a little anxiety when the symptoms come on but I know they are not been caused by anxiety. The autonomic Dr I am suppose to see is on holidays until the 18th of this month, unfortunately. I'm getting a little used to the HR increases and decreases, but now my blood pressure is going up and down and it seems to be doing this hour to hour and at times it feel like parts of my body is burning. It's hard to cope with this Bp situation. I am also getting headaches with it. Is this a normal happening with autonomic problems? Traci

I get more of a gagging type feeling. This morning after breakfast I started to gag and I vomited, the first time I vomited since I have become ill. I felt alot of strange sensations before hand. It felt like the vessels all over my body including my head were totally constricting and I got a funny tongue feeling and arm weakness. I was wondering if anybody else can feel almost complete constriction of their body with Pots? I have so many questions for I am experiencing many different symptoms. Traci EDIT, Well now I have been experiencing nausea for about the last hour and it seems worse when I turn my head to the right, which I am finding very strange. On a sidenote, I am so glad I have found you guys. It does help to express the symptoms to others who experience numerous symptoms also.

Thanks to all the welcomes! In regards to my heart, yes I have had a holter monitor test a couple of times and an echo, which were all normal. I'm having a tough day today, my heart doesn't seem to want to slow down at all and I didn't get alot of sleep last night for I felt like I was losing circualation in my arms and even my head felt strange and my neck doesn't stop burning. Does anybody else get these symptoms and if they do how do they cope and get some sleep? Sorry for all the questions. The symptoms I seem to be experiencing are getting worse and I'm having a difficult time. Most of the time, well nearly all the time, I can't stand still in one place without severe discomfort in my legs. I can't wait to see the Doctor and no presently I am not sure who I will be seeing. I find out about the appointment next week, hopefully Monday. As for the tilt table test, I have not had one yet. Traci

hello all, My name is Traci and I am new to this forum. I have been experiencing alot of strange symptoms in the last six months. Scary symptoms. In the beginning my heart rate would increase upon eating or sitting up or standing just slightly. Now most of the time on standing it is in the 140 range. I have been ill with many different types of symptoms, at first they suspected MS and ALS after alot of muscle loss, but my neurologist is almost positive I do not have either do to testing. I have seen numerous doctors and they just think my symptoms sound strange, which is driving me just a little crazy. I have had numerous negative tests. My cardio tests all came up negative. I feel wobbly now alot of the times when I stand up. Lately when I sleep I feel like I am losing circulation in my arms and getting burning strange sensations. I can't sleep on my right side for the symptoms are even worse. At times I wake up at night and have to walk to ease the loss of circulation symptoms, which seem worse on the right side. Sometimes I get this terrible gagging feeling. I also have alot of aches and pains and numb feelings. Sometimes when I turn my neck to the right I feel a little off balance and my mouth goes dry and my nose gets a little plugged. If I put pressure on my upper back I feel weird feeling in my arms and head. Also sometimes when I am walking I fell pressure going through my body and my hands change colors, red or blue. My neurologist is now sending me to an autonomic doctor. I am just wondering if anybody else has experienced these types of symptoms? I have been going through quite a tough time for alot of people in my life do not understand the symptoms including alot of the doctors. Traci