andersondebra

Naomi, you forgot the hyper forms of POTS and dysautonomia. I am the hyperadrenergic dysautonomia type, sorry I have to be the difficult one in the group, LOL!

Hi, I am Native American / Italian, so, I was not sure how to answer your race question, but there it is. Will you be posting your results? I would be interested in knowing if there is somekind of trend. Thanks, Debra

Brent, I know what you are going through, I too am going through the same thing right now. I have constant adrenaline surges even throughout the night. These surges can wake me up and my heart will be racing, my arm and chest hurt really bad, I get the head pressure and blurred vision and if I try to stand up and walk I too walk like a drunk. My head feels foggy and even my eyes feel as if they are swollen. I have noticed too that I usually get nightmares, which is unusual for me because I am not one to have nightmares or even remember my dreams. After it has gone I am left feeling worn out and my muscles feel as though they are trembling but to look at them you can't see anything. Then when I try to go back to sleep I will have muscle spasms throughout my body one muscle at a time. I have checked my BP during these events, but it is usually within a normal range, maybe just slightly higher than normal for me, but my heart rate is usually off the charts at around 160 beats per minute. I have told my doc about this but he cannot explain it. Right now they have given me valium to take when this happens (because I could not handle clonidine or ativan)but I am not finding much relief there either. Well, I wish I could give you some advice but unfortunately I am in your shoes and looking for the same answers, I just thought that I would let you know that you are not alone. God Bless Debra

Hi Klusyk, I had no problem getting back into him, but let me explain something, because I know alot of people wait a very longtime to get in to see him and other specialists. You see, the first time I went to see Dr. "B" I lived in Chicago, IL. and I had been hosptialized at the University of Chicago Hosp. I had been hospitalized for about three weeks and I was pretty bad as far as not being able to even sit up because my Bp would sky rocket up to 248/117 and my heart rate would also go up to over 200 bpm. so, my docs would not let me go home. They gave me a TTT and realized I had some form of dysautonomia but they were not aware of this type, it made no sense to them and they were unable to treat me because they had never seen this type before, so it was my cardiologist at UC that got me in to see Dr."B" within days. I was then transferred to vanderbilt from UC in chicago, so I did not have to wait. OK, so then I go back home to IL. after being dx and treated by Dr."B", but within weeks I began having problems so my docs in IL. called Dr."B" and began working with him long distance. Within about 6 months my doctor in IL. took a couple of week leave to go to Vanderbilt to learn more about these types of illlnesses and to meet Dr."B". Shortly after going into remission my husband and I moved to TN. so when I had this attack I was not sure what was going on with me so I first went to the ER at Vanderbilt, where I was admitted to the hospital for a couple of days. Due to my other illnesses the docs wanted rule out these symptoms being caused by something really serious. When they realized that the symptoms were being caused by dysautonomia again, they brought the dysautonomia team in. Dr."B" was out of town while I was in the hospital so once I was released I was set-up with an appt. to see him the first day he got back in to town which was 4 days later. I did see him again and we went over all my meds and designed a new program again for me. he remembered me very well which was really nice. He then told me that if I had any problems to call his nurse and set up an appt. to come back in. So, to answer your question, I did not have any problem getting into see him the first time or this second time. I think it is because I had a doctor at the time in IL that was very interested in learning about me and this illness and from DR."B" I also communicated via the internet with Dr. "B" even after I got better, I would email him to let him know how well I was doing and when my doc would call him or go down to see him he would be informed about my progress, so he knew me from that. Also being admitted through the ER and coming in from another hospital in IL got me through the door pretty quick. So, I know this probably doesn't help you much but that is how I got in to him so quickly both times. My suggestion to you,is to try and make another appt with his office, because you are a returning patient you may be able to get in quickly too. Also if your docs do not know much about this disorder they can call or email Dr."B" regularly to keep getting advice on how to treat you. Dr."B" is really good about working with other doctors and adjusting your meds. you know I even had an anestheiologist call him to find out how to put me to sleep for a procedure and Dr."B" informed him on which anesthetic to use and what to watch for while under and how to treat me afterwards. So, you may want to ask your docs to work with him more to help you. I hope this helps you. God Bless Dizzyizzy

Thank you to both of you for your input, it sounds like you are both doing well with your illness, I am sure you wish to be better but you have both found ways to live your life. I too did that the last time but it seemed as though I was not this bad, however I was wheelchair bound the last time and I am again this time but there are so many other effects going on that it is making me scared. I am on topral tartrate right now which is not working well for me, it keeps my Bp down when I am sitting still but when I get up and get physical it does nothing and when I lay down my Bp drops very low, by morning my Bp is usaully around 73/47, I got to tell you that it freaked some nurses out, LOL! but I told them that I was ok I just needed to sit up for awhile and sure enough my BP jumped up to 138/97 within minutes. Anyway, Dr. B put me on aldomet this time with the beta blocker for now but we may take that away in the next week and then midodrine at night to help raise the Bp for bed and I am suppose to salt the heck out of all my food and get plenty of water. So, we will see how all this is going to go, the only thing that I was on the last time but not on this time is valium.I may need to ask for it again if I cannot get the adrenaline surges under control. I am like you,(klusyk)I cannot walk very far at all, I am back to my wheelchair and I too have a handicap tag for my car. I also cannot talk very much because it too can send me off on adrenaline surges. heck just washing my hair or blow drying sends me off on an adrenaline surge. I don't know about you but even laughing sends my bp over the edge. I know it is going to take me time again to re-adjust my life, but I will get there and hopefully I will be able to put this back into a remission again. That is what I am working toward. Anyway, thank you, it makes me feel better to know that I am not alone with these symptoms. God Bless

I don't know if this counts because I was already on disability and off of work prior to my dx with dysautonomia. However,I have been a nurse for 22 years and the last fifteen I worked was in hospice, which I absolutely loved, but all of that was post dysautonomia. If there was anything I could do again it would be to go back into hospice nursing, I really miss the contact with patients and families. I don't know if this means anything but all of the nurses I worked with in hospice were all on antidepressants, we used to joke with each other if we had remembered to take our little blue happpy pill for the day, but I think most of us suffered from depression due to the years in hospice, which can take a toll on any person. Many of us should have left the field for awhile because we were bordering on burnout with death, but we all loved our work so much that we stayed and fought the burnout with Zoloft and jokes. God Bless

Hi, I am new here but not new to dysautonomia. I was dx 3 years ago with the hyper form, but after going on beta blockers for 9 months I went into a remission, which I hoped would have lasted forever, but that was not to be. About a month ago I started with inconspicuous symptoms which lasted about 2 weeks and then it hit me like a mac truck. I wound up in the hopsital for a couple of days only to find out that it was my hyper dysautonomia again. However, this time my symptoms seem to be amplified and some symptoms are new, so I am wondering if anyone else who suffers with the hyper type or any type experience these symptoms as well. List of my symptoms- SEVERE DIZZINESS (even when laying down, this is probably one of my worst symptoms) weakness uncoordinated blurred vision muscle twitching (especially at night when trying to sleep, and it is all muscles) headaches weird feelings in my head (these are hard to explain) high BP / high heart rate shortness of breath chest and throat tightness feeling as though someone is sitting on my chest and I can't enough air change in voice it is becoming hoarse and raspy) anxious for no appearant reason adrenaline surges (even wake me out of sleep) shortness of breath when talking or eating These are the major ones that I can think of, but so many of them are new this time around for me. One last thing I also have been dx with EDS, chiari malformation, fibro, colitis, psioratic arthritis,osteoperosis and I am sure I am forgetting something but while in the hospital all of these illnesses being the cause of this flare were ruled out, so it is not something serious, or at least that is what I have been told by the docs at Vanderbilt. Also I was dx by Dr. Biaggioni at Vanderbilts autonomic clinic three years ago and again this time. Please tell me if you are the same as me or if these symptoms seem to be normal for hyper forms or any form for that matter and how you cope with these symptoms. Thanks, Dizzyizzy