Michelle F.

[Moderator: I meant for my sub-heading to be my main heading, but I mistakenly made my name the main. Would you please correct? Thank you.] It was a good and tiring day yesterday, but I wanted to share it with everyone. Dr. Moore interpreted the TTT I had in June. I had an EKG and stress test on the treadmill yesterday, also. She said the TTT test definitely revealed NCS. The tests I had in her office did confirm MVP, but she believes my presyncope and syncope episodes are caused by my vagus nerve being irritated (I think that was the word). She prescribed Metoprolol to help with my drastic BP and HR changes. She was also interested in the sleep study results that I took with me from my neuro's office last May. Last year I was told that I didn't have apnea, so I didn't "really" look at them back then like I should. Well, yesterday, Dr. Moore pointed out that the results showed "limb movements with associated arousals"; the Periodic Limb Movement (PLM) Index was 14.1. She said that she didn't know about the index number, but she pointed out that apparently my sleep is disturbed by the movements. (In reading about PLM this morning, I find that any index over 5.0 indicates Periodic Limb Movement Disorder (PLMD). There are ANS symptoms that seem to go right along with this. I believe I need a new neuro now, especially since one of his offices' specialities is sleep apnea studies. I cannot help but wonder why he didn't address this! The study's impression also says, "Sleep disturbance with hypersomnolence (780.54). Periodic limb movements (327.51). Sleep time (382.5) minutes. That's a lot of movements during that time!) She prescribed Klonopin to help calm my CNS while sleeping. Hmmmm Does Klonopin lower BP or HR? I don't want to do that while I am sleeping. I think she's on to something though! I should have been on to it myself before now, but I appreciate her seeing that. She believes I can benefit from a trip to a rheumatologist, but wants me to wait until I have been on these meds for six weeks and she will re-check me. I agree with her methodically addressing one issue at a time. Dr. Moore spent a great deal of time with me. It was conversation style with her being a great listener. She was kind and did not want me to leave without understanding everything possible. She was very helpful and she is the first doctor that I have seen who really knows about dysautonomias. She was a real person, as well as a doctor with information that she was very willing to share with me. I liked her. Her staff was kind and helpful, too. That goes a long way with me. I was at the office for 3 1/2 hours and with someone or doing a test for probably 3 hours of that time. Much of it was with the doctor herself. Thanks for reading....and helping me so much a long the way! Michelle F.

Ernie- Do you know if taking Metoprolol and Klonopin would interfere with an accurate catecholamine blood reading?

Well, you all were right. It was not an issue at the dr's office today. I will post a separate thread about the appointment. Thank you. Michelle F.

Ernie- I've been wondering if there is a adrenaline element to my ailments. I fairly often have sudden shock and tingling feelings all over, especially head and arms if I am startled. I don't think it happens at other times. I have thought that was normal, and maybe it is, but it does not feel good, as it is painful. Does this sound like adrenaline rushes to you? Normal? Michelle F.

Thanks, Ernie. Don't need more worries. And, when I see on this board the real worries others have, I feel most fortunate. Thanks. Michelle F.

I was completing my paperwork for my cardiologist appointment at 9:00 a.m. in the morning at the MVP Center in Birmingham, AL. I was horror stricken to read (yes, I read it a few weeks ago, but forgot) that I am not supposed to have any caffeine for 24 hours before my appointment. I normally avoid caffeine because I don't like the jittery feeling I sometimes get. Well, I think I have really messed up. I had about 10 oz. of caffeinated tea at 1:30 p.m. (putting it at about 19 1/2 hours) and then a normal sized candy bar (only the coating was chocolate) about 5:30 p.m. (that's about 15 1/2 hours). I know there's nothing I can do except keep the appointment and hope they will see me. I just can't believe it! Do you think they might see me or will I probably have to reschedule? What do you think? I am supposed to have a stress test, ekg and possibly another ttt. It's not the end of the world, but I have had such high hopes for the passed several weeks.

I am looking back at my medical history to get everything together before a doctor's appointment. I am basically charting my life's symptoms and diagnoses on a spreadsheet, since I probably won't be able to think clearly after the tests are run. With my 4th and 5th pregnancies (my only boys), I was diagnosed with ptyalism. This was where I had an overproduction of saliva that I had to carry a spit cup for. It all resolved with the deliveries of those babies. With what I am learning about the ANS, I think it sounds like my ANS was overactive with those pregnancies. Have any of you experienced this?

You are right! Thanks for the laugh! Michelle F.

It is unusual for me to be at a loss of words, but that is where I am right now. My heart goes out to you. Sometimes when things just seem they couldn't get worse, they do. But, more than not, for me anyway, when I think all hope is lost, a ray of sunshine is just around the corner. I hope you are coming to your corner soon! Hang in there! Michelle F.

I would like to know, too. Michelle F.

Jennifer- Oh, I hope so, too! You will definitely have to share your Vandy trip with us! Thanks for sharing, Michelle F.

I usually have a copy of my complete and up-to-date medical records, but we moved in January and I just can't find all of them. We are in a temporary situation and will be moving again in the next 2-3 weeks. Anyway, I got copies of everything from my neuro's office today. By email, the cardiologist's office said they received my pcp's records, so I am feeling pretty good. I know I might sound like I am hounding the cardiologist's office even before I meet them, but I want to be sure they have the "hospital records" of my ttt results and not just an interpretation by a cardiologist who didn't seem to know what dysautonomia was, but wanted to pretend she did. When I told her that I was told in the late 90's that I had MVP, but a cardiologist I saw 2 years ago didn't see it", she said- "If they didn't see it, you don't have it." I've heard that, but she was so quick to dismiss it after seeing me for maybe 4 minutes at that point. I've also heard it's not always easy to see. Ugggggh -I am really hopeful for Thursday's appointment!

Jennifer- Thanks. I guess I have some running around to do.

The cardiologist's office I will be going to on Thursday wants my medical records and lab results. I emailed and asked them 'Have you received medical records, lab results AND especially- June, 2008 tilt table results from my pcp?'. They responded and said yes they have received them. Here's my concern. I fainted on the tt in June and would really like to avoid taking it again if possible. Because of questionable procedure, I may need to anyway. Someone here suggested that I get the hospital records. I'm not sure if my pcp sent the wacko cardiologist's notes and/or the hospital records....actual test results. I want this new cardiologist to have the test results, but it doesn't really matter to me if she has the the wacko ttt cardiologist's notes [you had a panic attack (not!) and need to see a psychiatrist....when my bp went to 70/40 and hr went to 47 and just would not come up...until I fainted]. I may not be speaking the lingo properly. Do I need to do anything else to be sure the Thursday cardiologist has everything she needs to help me? Thank you! Michelle F.

Jennifer, Thanks for writing. Our symptoms definitely sound similar! You said you have been dx with Autonomic Dysfunction and waiting on POTS dx. What do you mean, "waiting on the POT dx"? Are you waiting on particular test results? Thank you! Michelle

Thank you for your comments and words of encouragement. It has been uncomfortable waiting to see the cardiologist, with these rises and dips in BP and pain, too. I will post an update and let you know what they say. Thanks again, Michelle F.

Thanks for your responses. About 2 years ago, I told my neuro and pcp that my diastolic number was starting to go up. I was 120/70 regularly until then. It started inching toward 80 on bottom and I became symptomatic of hypertension. Doc prescribed lisinopril on top of maxide (diuretic) I was taking for Meniere's. About 6 mo. ago, I started having low BP and was brought off both of the meds. Since then, my BP has been up and down and I can't find a lot of consistency. I hope to learn more this week. On the TTT, my BP went to 70/40 with HR 47 until I fainted. But at home, my BP & HR go low while lying down, BP & HR go up while standing up. Do you think it sounds like I have POTS and NCS? I'm on no meds right now. Since the only official dx I know neuro has given me is ANS dysfunction, if I were to go to ER, I wouldn't know what meds to allow them to give me. I guess, based on my limited knowledge, I would have to trust them. Maybe nothing like that will happen before B'ham on Thursday. Susan- I'll post my experience. I've also thought it seems like I have tachy and brady moments..usually brady while lying and tachy while moving around. Guess that's consistent with ANS dysfunction....as well as any number of possible heart conditions? Thanks much! Michelle F.

I will see Dr. Paula Moore in Birmingham on 8/7 and hope to have official answers and diagnoses then, but I wanted to pick your brains. It's hard to wait to learn. I have noticed that I pant and have palpitations (is this tachy) when I am doing just regular housework. I have taken my bp while I continued to walk around at the same pace. A little while ago I checked it while I was walking and it was 165/115 with HR of 118. Anyway, last night it was 153/110 with HR of 115 while I was walking. (Average has been around 115/75 lately.) About three minutes after sitting down & reclined, my BP went to 106/67 with HR of 82. Then I stood up and it was 137/93 with HR of 105. Do the walking BP & HR numbers sound kinda high? What does the pattern of change sound like? One of my concerns is that my chest is tight and yes, painful dead center and a little above with my usual walking around. I have noticed that stress really makes my chest tighter, also.....whether I am sitting still or walking. Thanks for letting me ask these questions. I feel I have a new world of friends out there that understand so much more than anyone I am around. I really appreciate you guys. Thank you for sharing on this board! Michelle F.

Thanks so much for sharing! Michelle F.

Wow! I'll really have to remember to try this! Thanks! Michelle F.

Maxine- I'm sorry you have had such a rough time getting this taken care of. Please know there are others here who care! I'm one of them. Michelle F.

Pat57- Thank you for the link. My neuro did warn me against looking up and crimping off the blood supply to my head which causes more severe symptoms, but the kind of episode I had last night is more typical of what I usually experience....a little milder. One of my two vertebral arteries does not connect. Though my neuro didn't call it bowhunters syndrome, I think it was what he was describing. Thank you. lolo- Thank you for posting. I usually do not close my eyes because I feel more stable and less dizzy, but that is something I did different this time. I also think I lowered my head more than usual. I'm still figuring out what is good and bad for me. I guess that will never end. And, I guess it could be a combination! Michelle F.

Tonight I was listening to a visiting preacher who was passionate about his topic and almost seemed to be shouting at the audience. Anyway, while praying near the very end, I had my head moderately bowed and eyes closed. Suddenly, I popped my eyes opened because I felt like blood was draining from my head in the center of my forehead and between my eyes. I gripped the edes of my seat, which was three seats from the front. I knew something was happening and I knew I needed to lie down right then. I made the decision to get up and got my husband to help me walk out. I would have fallen on my face if I was alone. I was weakening, very shaky inside (but not like nervous), nauseus (always am), light headed, dizzy. A nurse friend came in and lifted my legs while I was on the floor. I recovered enough to leave within 20 minutes. My swallowing, which I have started having trouble with is worse tonight. I am also weaker and just don't feel well. I knew today would be a little worse than usual, when I got up to go to the bathroom last night and had a near syncope episode which had me on the floor and then crawling to the bathroom. My muscle spasms have also been worse and almost violent in my arms. Does my episode tonight sound like an episode of dysautonomia? I realize it seems to fit a pre-syncope episode. Might the "shouting" have been a trigger? I wasn't upset, but I didn't like it. What about the position of my head while praying? Could this have been a factor? Anything sound familiar? Thank you! Michelle F.

I'd love to hear an update after you go to Cleveland. I will have my first real appointment with a cardiologist who knows anything about dysautonomia in 1 1/2 weeks. Don't know if this will even come up, but I have come across the topic in my reading and it interested me. Thanks for sharing! Michelle F.

I have muscle twitches that started with my fingers, top of my feet and then just about everywhere all through the day. When they first started almost two years ago (I wrote down the day), I thought they must be neurological. It was like a signals from my brain were causing misfirings all over my body. Anyway, I now have obvious muscle twitches in my legs and especially my arms. My arms are getting weaker and I am losing muscle tone. I feel like if I stop moving (and I want to), I won't be able to use them at all. Don't know what is wrong. Good luck! Michelle F.