Michelle F.

Thanks everyone. I fainted on the "rich man's tilt table" a couple of years ago. lol (actually, it wasn't funny at all!) I was dx'd with the NCS, but I've had suspicions of POTS, though cardiologist said I was classic NCS. Anyway, she's helped me very much treating my symptoms. With these recent bradycardia symptoms on waking, I notified her of the change. She decreased the dosage and I am a couple of days into that dosage. I did let her know about my bedtime caffeine with the holter. I usually avoid caffeine because it makes me feel so bad...increases my HR...as evidenced on the holter. I have stopped monitoring my BP & HR at home because overall I've felt better the past several months. With things changing, I think I will spot check it. I do know that my bottom number (at rest) has increased over the past few years. It's been almost equal with my top number on a few occasions! Thanks again, Michelle

In preparation for going to Africa this next week, I have tried to cover all bases. Last week, I sent a quick email to my cardiologist and let her know that I have had a new feeling the past several weeks (that I've kinda ignored). When I wake up after lying down (whether nap or full-night's sleep), I feel like my heart is beating a very slow and chaotic tune. Sometimes a forceful push/pump will wake me up. Recently, I felt like that forceful push woke me up and that my heart may have stopped beating prior to it....don't know why I think this. Anyway, I received a prompt reply that I needed to come in for a holter as soon as possible. I've never worn one, but went the next day. I wore it for 24 hours and the holter was picked up by Fed Ex from me on Monday; sent to Nebraska, I think; and I received a call from my cardiologist's office in Alabama in less than 24 hours from the time I sent the holter. The nurse said my HR was 146 when I went to bed (I'd had a caffeinated coffee because a friend suggested I do unusual things so that the doctor could see what my heart does- don't know that I should have done that though). Anyway, the next morning my HR was 34; then 51; on up to 80 and 91 varying throughout the day. These were preliminary results, so she didn't have the complete report. My orders were to decrease my Toprol to 1/2 tab (rather than 1 whole) in the morn and keep 1/2 at night. I am to call them on Monday and let them know how I feel. I've been told I have NCS, but does any of this sound like POTS? I realize I'm on Toprol, so it may be hard to tell. Is it surprising that my HR went to 146 with a cup of coffee?! Should I be concerned about the 34 on waking up? Is there something I can do, other than changing dosage to get my HR up some in the morning? I'd appreciate any thoughts. Thanks all! Michelle

Thanks so much for everyone's input. I waited until I met with my new neuro yesterday and he gave me the all clear. So, today, I had the vaccines. So, I guess it looks like I really may be sailing bon voyage for most of December. Michelle

Thanks, Julie. I am so up and down with this decision! Your advice to delay until all the tests are in is a good one. I can see me giving that advice to someone else, but common sense is sometimes hard to use with myself when I am right in the middle of it. Thank you.

Thank you for your response. I will be in Arusha, Tanzania and surrounding areas on a mission trip with my family. Three of my family members went in May and now they are taking us all back. It is now in their hearts, too. Any and all information is greatly appreciated! Michelle

I am scheduled to go to Tanzania, Africa from 12/3 to 12/28. I have known for a few months, but I have not been vaccinated because I wanted to be sure I felt up to the trip first. I think I can do it, so I need to move forward with my plans...which include vaccinations. The Yellow Fever Vaccination (YFV) is required for re-entry into the U.S., unless you have a medical waiver. I don't know if I should have it or not. I don't know how to find a doctor who can reliably tell me I should not...if that's the case. I have a new neurologist who has run MANY tests, but I won't have those results until next week. From them, I do know that I have carpal tunnel and the eeg showed some slowing on the left side of my brain. I am 43 years old. Anyway, if I have the YFV, I need to have it at least 10 days before possible exposure. I see the doctor for test results on the 10th day before my departure. One of the conditions the neuro is ruling out is Myasthenia Gravis. This is one of three conditions specifically mentioned for not having the vaccine if you have it. I called the neuro and the nurse said he said that I should be able to take it. I just don't feel I have enough information yet to make an informed decision. I don't know if the benefits outweigh the risks for me. I don't know how to pursue a waiver if I need it, either. Any advice, information or input?? Anyone? Thank you! Michelle F.

Today was a day of follow-up doctor visits after my initial ER trip. The doctor in the ER didn't tell me to follow-up, I just did. Anyway, I am glad I did. After seeing my urologist and gynecologist; and having a pelvic ultrasound, a renal ultrasound and a KUB x-ray, the apparent cause of my excruciating pain and odd reaction to it was a ruptured ovarian cyst. The cyst is still there and measures 2 cm. Because it is irregular in shape, the gynecologist believes it ruptured, giving it some relief. She will do another pelvic ultrasound in 6 weeks to be sure it is resolving itself...which is what she expects. She also said every person's body is different and that she suspects that the symptoms I had with my hands, feet, etc. were my bodies reaction to the severe pain. She let me know that I should have had an ultrasound or x-ray in the ER and that is not normal....she was not happy with the way I was not checked out more thoroughly. BTW, I didn't go to the hospital where she works, but a smaller one. I just didn't think I could handle the extra few minutes to get to the big hospital.....because of the pain. I will know better next time. Also, the urologist said my urine was clean as a whistle. Thanks everyone for your help! Michelle F.

That is interesting! Not medically speaking, but I was classified as a black female when I obtained my gun permit. They got the female part right! I got all the way to my van before I caught it. When I went back into the sheriff's office, the black lady who issued it and I got a good laugh. My skin is pretty pale.

Thank you, mkoven. You have been helpful to me in the past about this. The rheumatologist didn't offer a dx with my hypermobility issues. He seemed more concerned about addressing my fibromyalgia issues. He was a good listener though, so I asked him if he had any reason to suspect I had Ehler Danlos, or something of the like. He acknowledged that I had some hypermobility, but that it was benign....all the while investigating my "normal" looking skin. One other thought I have had is that I have an abdominal hernia, post surgery...hmmm....sounds consistent with connective tissue problems, doesn't it?. Thanks again. Michelle

I will ask my doctor, too. Thank you! Michelle

Thank you. A lot of what you said is over my head, but I will do a search for some of the things. I do not have POTS, but your information may help me connect some dots. I knew pain was not normal, but I just wasn't sure about inflammation. Thank you! Michelle F.

Thank you, Thankful. (I like your name. ) EDS does keep coming up and I do highly suspect it. I went to a rheumatologist, but he said I have a benign condition...think he based it on my normal looking skin. I believe I do need to see someone for a clearer dx about the hypermobility issues I have. Of my five children, I can tell at least four of them "loose ligaments". I will look at your link. Thank you.

I want to understand inflammation. Maybe some of you can help me. I went to a doctor about 7 years ago because I was tired of hurting. He was a sports medicine doctor and I was having some joint problems, but pain everywhere. He was thorough and I had a lot of testing. He ruled out all of the big things. He treated me with Celebrex for systemic? or chronic inflammation. I eventually took myself off of it..when my doctor was activated to go to Iraq. In hindsight, the only time I have been pain free in my adult life (I am 43) was when I was on Celebrex. Is inflammation normal with age? Does everyone have it? Why do I have it? How can I get rid of it? I have fibromyalgia...could it be related? Is there a more natural way of dealing with it than medication. I know so many people on here are going through so much more than I am. But as I sit here typing this, in tears, I am sooooo tired of hurting. Yes, I have my limbs, vision, most of my hearing, my beautiful family and my faith. But what more can I do to stop hurting?! Thank you everyone. This truly is one of those "But you don't look sick" things....because I just keep going....because I have to. Michelle F.

Flop- Thanks so much for taking the time to post those very interesting pictures! I guess when I hear "x-ray", I think "bones". Last year I had recurring UTI's, with no prior history. A test was done that used dye (don't remember what it was called), but since they called it by it's more specific name, I didn't think of it as an "x-ray". Nothing was found and the urologist doubted that I had in fact had infections. He believed the specimens may have been tainted at the lab or my PCP's office. I had symptoms though..that's why I went in the first place. He did do a cystoscopy which revealed nothing unusual. He did say that I have some blood (not visible to the naked eye) in my urine and that some people just have that. Surely, whatever test they should have done....or will do, will look at the complete urinary tract though. Thanks so much. Very interesting and informative. I appreciate any thoughts and information you have to offer. Michelle F.

Count me in! Michelle

Over the past couple of days, I have scheduled appointments with my urologist and my gynecologist (ultrasound first) for this coming Thursday (6/25). This will give me time to finish the round of antibiotics and be off of them for about 5 days. Thinking back to the severity of the pain with this event, I recall I was wallowing in the bathtub, sloshing water out by the gallons according to my husband. I was not really aware of what I was doing because of the pain. He gave me a large glass of ice water because I was soooo thirsty. I was shaking so badly (I presume with pain) that I spilled almost the entire contents on me in the bathtub. Didn't phase me a bit!! At the time I remember thinking...."that should hurt"...but it was the least of my concerns. Both the uro and gyne offices seemed irritated and shocked that the ER had not done an x-ray (don't know of what) or an ultrasound....but had only done a urinalysis. Thanks everyone for your input and advice. I'm going to go to someone.

I think I will try to see my pcp tomorrow. I didn't have a good day. It isn't that I really want my cardiologist's opinion, but I want my dysauto. doctor's opinion...she happens to be a cardiologist, if that makes sense. She works at a Dysautonomia Center. None of my other doctors seem to understand my condition....not the gyno, uro or pcp really. But, my pcp tries, so I think that's a good idea. Thank you.

Thank you for your responses. No, they didn't check my kidneys or do any blood work. It has now been a little over three days and I still feel like something is going on; 3rd day on Cipro (antibiotic). There is less debris in my urine. I am very thirsty. No matter how much water I drink, it feels like it goes straight through me. My urine is less concentrated after I have had a glass of water. But, when I wake up in the morning, after urinating all night, there is not much urine and it is very concentrated. Why is my body not holding onto the water I drink. Are my kidneys being overworked?....leaving me with rbc in the urine? I do think I have a uti, but I'm just not sure about the kidney stones? Would I have vaginal bleeding with those? I am waiting on a call from my dysauto. doctor (cardiologist). Thanks again.

Oh, I also barely remained conscious through the itching and painful episode before I got to the hospital. I don't think it was from the pain, but one of the NCS episodes. Kind of felt like I did right before I passed out on the tilt table.

It's been a while since I've been on, but I am not sure where else to turn. You all have helped me so much in the past, I wanted to come here and see if anyone has experienced anything like this. Almost 48 hours ago, I awakened from sleep with sudden SEVERE lower abdominal pain (cramping?) and extreme thirst. I went to the toilet and had a little diarrhea and urinated. Then, my hands started itching like crazy and turning red quickly! Other body parts started to itch a lot: feet, inside my mouth and my genitals. I felt like I was in the transition (most painful) part of childbirth. The itching and red hands stopped within about 30 minutes. My dh got me to the ER within about an hour, so the doctors didn't see my hands and other itching areas. Lower abdomen was tender. The doctor ordered a urine test. When I was getting the sample, I could see a lot of debris in the urine and it was concentrated. I patted dry and had thick discharge and light to medium bleeding vaginally, but don't think it got in the cup....not sure. The results were "a few bacteria, red blood cells, white blood cells". His dx was UTI, possibly kidney stone. The intense pain subsided within 2-2 1/2 hours. I do not believe I am/was pregnant. Don't know if he did pg. test. The first UTI I had was last year about this time and now I always have some RBC in my urine. Don't know why and urologist said not to worry about it. I emailed my dysauto dr. who is a cardiologist, but she is out for the week. The nurse will call me, but I am at a loss for what this sounds like. This was my first trip to the ER, since my NCS dx and I was uncertain of how to handle it. My bp was 109/70, so that was good. I am on Metoprolol. No fever. I am a 43 yo female. Does anything come to mind? Thank you, Michelle

I'm glad Susan. Michelle F.

Thanks. They did not say anything about vertebral artery compromise, but I can tell you that I only have one of the two vertebral arteries. One of them does not connect...ending in the PICA (whatever that is). I found this out from a brain MRI last year. Because I had an episode after repetitively turning my neck, where I lost body strength (could not pick up body) and had incredible dizziness, I was instructed to be careful not to crimp off the blood supply to my head, with the one vertebral artery. Not heard of Thoracic Outlet Syndrome, but will look it up. I received my MRI results in the mail yesterday. They said more than the nurse did on the phone. C5-C6 asymmetric right-sided broad-based disk osteoophyte complex results in mild/moderate lateral recess/ right neural foraminal stenosis (encroachment). C6-7 minimal broad-based disk osteophyte complex is seen. Associated minimal bilateral neural foraminal encroachment. Minimal C6-7 spondylosis. Does this give any more clues? What kind of doctor(s) can address these neck issues? One other symptom I have had for maybe 10-15 years is that I have to hold my "adam's apple" (I'm a 42 yo Female, but this area) to cough. It's like things are too lose in there? I don't know if everyone is like this, but the cartilage there is so flimpsy and easily shifted from side to side with creaky sounds. Please share any thoughts. Thank you!!!

Thanks, Maxine. I have an appointment with the rheum. in January. I think I'll keep that appointment, pick his brain and get the MRI results officially from him. Then, probably see a geneticist or some other connective tissue specialist. Your post reminded me of my TTT in June. I fainted when the table was raised and my bp went to 70/40; hr 47. I remember asking the nurse if I could have something to put in the curve of my neck while I was lying there, but she told me I had to be flat. I never lie flat because my neck just needs the support! Anyway, now I am really wondering if I fainted because of the compromise that the bone spur may have caused or because of misalignment of my cervical vertebrae. hmmm..... The dx'd me with NCS.

I should have said that my cardiologist said my NCS is from vagus nerve irritation. I knew I had neck problems when I first met her and I asked her if there could be a physical or anatomical cause for the irritation to this nerve. She said that she had only seen that one or two times and she does specialize in dysautonomia, so we did not pursue it. Now I am finding out that a spur is causing symptoms in my arm(s). I am all about answers and that is one thing I have not had a lot of with this illness. Does anyone here know much about neck injuries or defects being the cause of vasovagal syncope or other ANS issues? Thanks much, Michelle F.

My cardio recently sent me to a rheumatologist for fibro symtoms and possible cartilage issues. The rheumatologist agrees with the neuro and cardio that I have fibromyalgia. He also said I have Benign Hypermobility Joint Syndrome, unlikely EDD because I don't have any skin symptoms. (I realize there are different forms of EDD.) He ordered an MRI of my cervical spine because of the chronic pain I am having. I have a mildly degenerated C5-C6 disk and a bone spur on C5 that is "compromising a nerve" in my right arm and possibly causing the numbness and pain in my left arm, as well. Not sure, but he wants me to see him at my appointment in January. Don't know what he will recommend or what more I will find out. My big question is, might my ANS symptoms be caused from this spur? About two years ago, I became more symptomatic with the NCS I have. As I am typing this, I am realizing that I have Meniere's (predominately right side); blurred and dimmed vision in the right eye; frequently drop things with my right hand. I also have cervical & thoracic spondylolisthesis (vertebral slippages, probably from fractures). I have little or no curve in my neck. The doctor said my x-ray looked to him like that of someone who had had a major trauma, like fallen off of a horse or been in a bad car accident. I told him that I was in an auto accident when I was 9 and broke my left collar bone. He nodded as though that could be a probably the cause. Anyone else here had cervical bone spurs? What was the treatment? Possible connection to ANS dysfunction? Thanks!