Michelle F.

Hi! I'm sorry no one has posted a response to your question, but I am also interested to know if someone out there knows about this. For some reason, over the past year or so, my normal diastolic number has increased. Anyone? Michelle F.

Maxine- Sorry it took me so long to post. I hope that doc is not still there, too. I am learning (the hard way and by reading other's experiences) just how hard and important it is to get connected with the right doctors. Best wishes! Michelle F.

LOL I did have to laugh when I saw this link and read all of your posts. I went to a UROlogist last week and one of the first things out of his mouth was, "Are you a nurse?" I've heard this A LOT lately. Anyway, as he shook my hand to leave the room and then turned to my husband, he said, "Smart lady!" Made me feel terrific, but I do wish it had been one of those doctors who helps me in other areas of my health- neuro, cardiologist, etc. Another reason I had to laugh...if you have ever watched "Everybody Loves Raymond", my husband has started imitating Raymond from one of his scenes where he says in an exaggerated way, "Oh, look at me at my biiiigg words!" making fun of Debra, his wife. I don't try to sound smart OR talk over other people's heads, but these medical words have just become a part of my regular vocabulary. I don't even know I am doing it! Michelle F.

Maxine- I've never heard a radiologist use the term "exquisite".....and it sounds like they meant "perfect"? Yeah, I think you'd probably not be able to communicate if something happened since 2005. I'm interested that you mention NIH. I've looked at their site because someone recommended that I consider them. I'm seeing a cardiologist in August and hope to then know what I need to do. I'm thinking take myself to a neuro somewhere that can better dx me. The NIH site was confusing to me and I didn't know where to start on how to see a doc there. If I were to go there, would I have to be in a study, or are there doctors there to see outside studies. A study would be ok, but I just couldn't figure the arrangement there. Thanks so much for responding. It sounds like your condition is much more severe than mine, but it does sound like we have some hypermobility and structural similarities. Michelle F.

MightyMouse- EDS definitely sounds like something I may have, but only the hypermobility type. I don't bruise easily or have thin, other than eczema. It sounds like I need a good rheumatologist for dx. My neuro said I have probable fibro and I haven't pursued that, so maybe seeing a good rheumatologist might be a good idea. mkoven- It's been a long time since I read up on migraines. Thanks. Things are making better sense to me. My vestibular migraines have subsided, but I do still have the vertebrobasilar migraines. I am usually able to avoid taking meds, but my neuro has given me Epidrin (Midrin) which sounds like not a good idea since I only have the one vertebral artery. I think that discovery was made after giving the Epidrin though. I have only taken about 8 in 18 months, but don't think I'll take anymore. Thanks for helping! Michelle F.

Morgan- Interesting about the angiography. I don't know if that was one of the tests they did a couple of years ago, but I will see what I can find out about it. My local neurologist is the one who had my MRI done. He emphasizes how important it is for me to stay hydrated and not to "crimp off" the blood supply to my head by looking up. He believes that is what I am doing in some of my pre-syncope like circumstances, though with some differences....rapid shallow pant and inability to move my body even though I am conscious. mkoven- I've heard of that kind of migraine, but think my neuro said I have vestibular migraines. I'll definitely read up on those. MightyMouse- I'll look up your story in the archives. Do you have EDS? What is the best kind of doctor for this? I have just come across this in the past couple days, so I am not very familiar with it yet. Things are sounding familiar, though. My disc ruptured when I tilted my head upward to put on eye shadow and I heard a really loud pop. I couldn't lift my arms for days or move my neck without excruciating pain before I finally got in to a doctor four days later. Thanks so much for your input and encouraging words. I am so.... glad I found this site and you guys! Michelle F.

RichardinAZ- I am so sorry for your horrible experience. Please keep us updated on what you find out with your cardiologist next week. Michelle F.

Thank you, Maxine! Michelle F.

Angela- Thank you. Sharing your positive experience at Vanderbilt here has given me hope, as well as many others, I'm sure. Maxine- Please read my post "Secondary Dysautonomia?". What is EDS? Michelle F.

Thanks, Rachel & MightyMouse! Michelle F.

I had a lengthy discussion with a nurse friend of mine who also has been diagnosed with dysautonomia. He is apparently very informed and I learned a lot from talking with him yesterday. I am at the stage where I have a neuro who has told me I have dysautonomia, but little more than that. I don't think he knows much more than that and has been observing me for 1 1/2 years or so, while he tries to make sense of my symptoms. Here's my situation. In June, 2007, an MRI/MRA of my head revealed that one of my two vertebral arteries is enlarged and that the other one ends in the PICA. This means that I have only one of the two main vertebral arteries that supply blood to my head. The one I do have has enlarged to try to compensate and I have probably been like this since birth. I have thought this complicates the dysautonomia I have experienced since I am positive blood/oxygen to my head is often compromised. However, my nurse friend, said that based on what I am telling him about my experiences, he believes that the dysauto is secondary to the lack of one of my vertebral arteries. I think he may be right! He said it sounds like my vertebral artery may be spasming. I do have spondylolosthesis in the upper back/neck. This is a condition where the bones slip and slide. I have lax ligaments throughout my body, even resulting in chondromalacia patellae (bone on bone in the knees). I have had a "neck incident" where a disk ruptured, without real cause and I was in traction for six weeks to heal it. My neck is weak in muscle and bone. I also know that circulation to my inner ears is compromised. I have been dx'd with Meniere's, but the specialist said it is secondary to something else. I have always thought my inner ear problems are secondary to something being wrong in my neck. Does any of this sound familiar to anyone here. What kind of neuro or other doctor would know enough about this? Where? Any help or information anyone can offer is appreciated! Thank you! Michelle F.

Hang in there, Ernie. You can do this! Michelle F.

But, both POTS and NCS are considered forms of dysautonomia?

Angela- When you had to breathe into the blood pressure thingy, did you feel like you might pass out? I think I would. When a doctor asks me to take a deep breath, so he can listen to my lungs, I can only do it about three times before my head really swoons. Michelle F.

Susan- I will be sure to post my experience and hope it helps! Michelle F.

ajw4055- "Did you have whiplash or any neck injury in the car accident?" I don't know if I had whiplash or not, I was 9 and don't remember much about it. It wouldn't surprise me because of the proximity of my collarbone to neck when it was fractured. I can tell you that I have had a weak neck for as long as I can remember. When I was 25 yo, I slightly tilted my head back to put on eye shadow when I heard a tremendously loud pop. I couldn't lift my arms and was in a lot of pain. I had ruptured a cervical disk to the point of leaking, but not completely. I was in traction for six weeks and recovered without surgery. Still, I have a weak neck and I hear grinding and fluid sounds in it. I have a neurologist that I have been seeing since 2006. It seems the time to get a second opinion. Thank you for responding! Rachel- "I recommend getting a copy of your hospital records from the test, and bringing it with you to the new cardiologist. There may be enough information there for him/her to make a diagnosis." I will be seeing another cardiologist on 8/7 and I will be sure to take the hospital records. Thank you!!

mom4cen- Thank you. I just received the packet of information from the Center in Birmingham and started second-guessing my decision to go. I guess I was remembering my last poor experience with a cardiologist and didn't want to go through that again. Your have encouraged me with your words and by sharing your experience with this particular office. Thank you!

I am so... sorry you had this experience. I also hope that you find a new, better doctor and staff! Michelle F.

Thank you for the responses. I am scheduled with the MVP Center in Birmingham for August 7. I'll follow my gut (which I needed the reminder for ) after that. Michelle F.

ajw4055 - Thank you. I am going to see about having an asthma test (just to be sure) while I am seeing doctors. Another thing I recall is that the Carbon Dioxide in my labwork was high. hmmm. Michelle F.

10-11 hours, but I seldom get it, as homeschool mom to 5 children. Michelle F.

Ernie-Thank you. I often feel I do not get enough oxygen/blood to my head. In hindsight, I believe I have been like this off and on since I was 9yo (I am now 42). When I was 9, I was in an auto accident where I broke my collarbone. I fainted with that and off and on since then. One discovery on a recent MRA of my brain is that one of the two main vertebral arteries that supplies blood to my head does not connect, but ends. The remaining vertebral artery that remains is larger to try to compensate. I am starting to believe all this goes back to that accident. Thanks again! Michelle F.

I mentioned some of my TTT experience on another post, but I have some questions I'd like to ask here. My neuro said that I have dysautonomia, but I don't know what form he believes I have. I also have a history of MVP. I'm learning here what questions I need to ask. Anyway, while on the TT, I believe I maintained a bp of about 135/80 most of the first 20 minutes while lying flat. The nurse kept talking to me and asking medical questions, then had me sign my papers while hooked up to everything, so it was hard to relax and do my normal thing. Usually at home my bp drops along with my heart rate quickly after lying down. Then, I was put in an upright position. I didn't realize that I was supposed to really simulate what I would do at home if I "let myself go", so I did what I usually do and tried not to pass out. I rested my body on the table rather than stood on the platform. I turned "what as a sheet" and my bp went to 70/40 with heart rate at 47 upon being put upright. I felt awful and my lungs especially felt heavy. It was hard to breathe, but I didn't panic. After 5 minutes with no change in BP or HR, the nurse asked me if I could continue to stay in that position for another 35 minutes. I have to admit I felt anxious when she said this. It was also then that I realized I was supposed to let myself pass out if that was what I would do at home. So, I relaxed and just let go. My breathing was shallow, but not panting. I gave her play by play verbally of how I felt...even up to the point where I said, "I'm going to cry". It felt just awful, but I didn't feel like I was having a panic attack. Needless to say, I awoke doubled over, not knowing where I was and being pulled from a super, super deep dream. When I came to, the nurse said something like, "It's good I sat you back or you would still be out." I didn't understand this because I awoke with the table upright. She seemed a little unsettled herself. I asked her how long I was out and she said "less than a minute". When the cardiologist, whom I've never met before, came in and looked over everything VERY briefly, the nurse told her that I was panting (don't know at what stage she meant) and that I was mumbling something that she couldn't understand when I was out. Please bear in mind that the credibility of the nurse is at question with me. I didn't feel that she had lowered the table at all, but that she acted like she might get into trouble for something...not sure what...maybe allowing me to go so far as to pass out? But, maybe she did. I was out. From the beginning she tried to talk me out of taking the test. I then realized she was unhappy she was missing meeting someone for lunch. She was also unhappy that she was being asked to perform four more tests that she did not want to do! While I was lying there recovering, another nurse came in and they both complained together. The nurse also took a personal call while I was recovering. I sure didn't feel the focus of the event. The cardiologist said that I hyperventilated from a Dysautonomia-induced Panic Attack and I need to see a psychiatrist. She said something like, "you didn't even get far enough along to have the medicine". She prescribed a beta blocker and called my primary doctor. My primary doctor said that she seemed suspiciously overly-conscientous and he thought it might have something to do with the cardiologist being aware of the nurse goings-on. The cardio told my primary that my anxiousness needs to be addressed, but that further evaluation for the presence of any heart conditions should be done. My primary told me that the cardiologist did realize that you don't faint nerves. He also said that my feeling like I was leaving a dream sounded something like a seizure, but that I didn't have one. He said I flunked the TTT. What does that mean? Positive TTT? I am planning to go to another cardiologist with knowledge of Dysautonomia and MVP. I'm keeping my neuro in the loop in case it turns out that I have no cardiac reasons for the pre-syncope episodes I keep having. Any answers, help, input and knowledge about any of this that may sound familiar is greatly appreciated! I'm so glad to have found you all! Michelle F.

jbrian00- I hope you get some answers. I am interested to hear what others have to say. Mack's Mom- Mack's ARE wonderful! Thanks for the link. Michelle F.

Mack's Mom- What kind of doctor is evaluating you for this? BTW, I have a Mack, too!