mkoven

sitting 50-80; standing 60-120; supine 45-80. I've been getting some uncomfortable lows. current seated bp 105/69. current standing bp 108/74. but those numbers vary enormously. i'm not too symptomatic today.

the other night it dropped into 40s, and as it did, I got incredibly cold. Creepy.

Hi Maxine, Not to discourage you, but I just spoke with the neurosurgeon I saw in Maryland on the phone about some new symptoms (trouble swallowing). I'm now back in Illinois and looking for someone to follow me for my instability. He essentially told me that there are only four people in the country who treat this issue-- him (Fraser Henderson in Bethesda, MD), Daniel Heffez, Dr. Oro in Colorado, and Bolognese at the Chiari Institute. In my case, if I were to opt for surgery, it would need to be not just a decompression for the chiari, but a fusion of skull to C3. Don't think I'm ready for surgery, but with my new swallowing issues, I want someone knowledgeable, closer to home, "in the loop." I'm trying to get in with Dr. Heffez in Wisconsin.

Last year I had a huge saga on this front. Chest pain led to adenosine thallium streee test led to false positive led to cardiac cath which was normal. once i could stabilize my bp and hr, the has been better. i still sometimes get cp, but a lot less. if ischemia means inadequate blood flow, then that may be accurate--even if it's not from a blockage

I have a slightly different one--a theracane-- and it really helps for those knotted lumps in my upper traps and inside my shoulder blades. the knots come back pretty fast, but it's nice to have some non-drug tricks up my sleeve.

wish i could tell you! I've had chest pain at various times that has always been atypical-- and been tested up and down. If it's new, I would make sure your doc takes you seriously. Right now, it's a lot better since getting the other ans symptoms under control. IT was debilitating last summer.

I've had a droopy lid since 2002--when some of my ans weirdness started. I had mg ruled out. It's been noticed by several doctors since. I have to imagine it's part of my whole ans/migraine/brainstem weirdness. I no longer notice it, but when I'm tired, I notice that lid is a little slower to blink. BTW, I was blown off when I first mentioned it-- told it was "stress." GRRR. But the three specialists I've seen recently-- a neurologist, neurosurgeon, and geneticist have all commented on it.

So I posted hear a while ago about my recent scare of an enlarging aorta. It was remeasured at 3.3. Today I talk to the eds geneticist on the phone again to decide where to go from here--whether we just repeat the echo in 3 months and whether to change my ans meds and exercise. I've finally found a regime that more or less works with midodrine, florinef, compression, salt. fluids, and daily exercise, and am very reluctant to mess with it. On the other hand, an aortic aneurysm is nothing to mess with. My bp is not high-- just measured it at 115/70 on mido and florinef. But if my aorta were enlarging, they would want it lower (105/60) . So here is my question. I don't feel like I can lower the dose of my ans meds and still function. But I would be willing to take something IN ADDITION to bring my resting bp down ten points. In other words, I' m not opposed to lower bp, as long as it is STABLE. If we lessen the mido and florinef, it will be generally lower, but also much more ERRATIC-- with scary lows and some spikes. And I'll likely feel awful. I've more or less gotten my life back in the last year and am reluctant to take a step backwards So anyone know if it would make sense to add something like losartan/cozaar (an ace inhibitor) to bring my bp down a bit, if the doc tells me she wants it lower? (She basically said if I have an aneurysm, I'm doing everything EXACTLY opposite of what I need to be doing!!) It makes much more sense to add something like that, rather than to take away meds that work. So how does one lower bp while stabilizing the ans??? (I can't take beta-blockers).

I ultimately found my experience useful, but was a bit frustrated by what struck me as a certain reluctance to talk about ans symptoms OTHER than lightheadedness/tachy. I'm not sure that we managed to get on the same page, interpersonally. That said, the diagnostic testing and treatment recommendations were helpful.

just wondering why hormones have this effect. sometimes it goes into the 40s--and i always feel awful. anything below 55 and i feel unwell.

just curious how many hear think there may be a neck component to their ans issues--anything from chiari, to cranial-cervical instability, to some other upper--spinal issue. i've just been diagnosed with mild brainstem compression and wonder what role it plays in my many symptoms. mine is from small chiari (4mm), cranial-cervical instability, with a retroflexed odontoid and a small clivo-axial angle, so that I'm pinching my brainstem when I flex my neck. I also have eds and had previousl been told that it was my poor vascular tone that causes the ans issues. now i'm being told that the link to eds is that eds weakens tissues, causing chiari and cervical instability. don't know what to think.

here i go again with another round of premenstrual ans symptoms. i seem to feel very short of breath, tired, tight in the chest. i've been wearing my hr monitor, and i looked down today, and as I was feeling crummy, I saw my hr drop into the low 50s, with each drop, corresponding to feeling crummier. anyone else notice this? I'll take my bp, but I think my symptoms are more confined to hr. any theories/explanations? excessive vagal tone? I feel best when my resting hr is in the mid 60s.

I've been in the same boat over and over. If you are having new symptoms that have not been checked out, they need to be. At minimum, they can do an ekg and check enzymes for heart damage. I've had a bazillion tests, including a cath. My symptoms are a combo of dysautonomia, and possible vasospasm. but it helps to have a good relationship with a cardiologist. My cardiologist has saved me a couple er trips, as I could call her, tell her what was going on, and we could then see whether I needed to go in.

I've lost count-- too many. I try to ask if they are absolutely necessary or if there is an alternative, like mri. I know that I've had too much radiation. I've had them of head, lungs, kidneys, heart--and some repeatedly. Hope I'm not glowing yet.

As I write this, I just took the brace off. It's so tough to know which to do. The nsg said to wear it 80% of the time now. I do notice that I don't necessarily use the right neck muscles-- I"m trying to retrain to keep my head back and up with lower traps, rather than protruded and supported with upper traps. It feels better, but is totally different--- and unnatural. I"ve had a forward head position for so long!!! I find any flexion brings on symptoms. Does anyone have neck-specific stabilization exercises that they like?If so, could you pm me or post a link? Mine have included thoracic strengthening, trying to activate flexors from a neutral position, and isometrics. I'm thinking of trying Alexander Therapy, as that is supposed to be all about proper head-neck relationship, easing movement. Just have to find a teacher who will respect my limitations. I"ve also switched from my walker with seat to a seat cane, as my pt pointed out that pushing the walker was really forcing/keeping me in a hunched position. and like you, Maxine, the rest of my spine is not great either. I've had surgery on L5-S1, and have multiple herniations and bulges throughout. So yes, body mechanics are key. Can you pm me the names of surgeons you've liked in the midwest who "get" it? I don't want surgery now, but would like some more opinions and someone to check in with.

apparently not that many docs know how to spot it, nor do radiologists. Working from the same mri, another radiologist and neurologist missed it. I saw a neurosurgeon specialized in the cranial-cervical junction. He not only examined me, but looked at specific angles on my mri. My clivo-axial angle is too acute (normal 165, me 135) and my HArris and Grabb-okes lines show instability. I have no idea what/where these are. I also have a retroflexed odontoid. I told him and showed him how much worse I feel though when I move my head around. I can bring symptoms on depending on head position. Where are you located? He gave the names of a couple other people whom he trusts. I want to be sure not to let me neck get weak in the brace, so I take it off regularly, but as soon as I start in on my symptoms, it goes back on, because I really don't need to be pinching my brainstem. I can go for walks without it-- it is easier for me to keep good posture when I'm moving, than when I'm sitting around. My muscle spasms are better with it, as I'm not fighting so hard to keep my head up. But I am doing exercises to strengthen my lower traps (NOT upper traps, which are in spasm), and use my thoracic spine--when I flex in my upper back, my head droops. If I can extend my thorax, it's easier to keep my head erect. So I basically am trying to relearn good posture. But I have a feeling that my weak/stretched ligaments can't entirely be overcome with good mucles. Surgery may be in my future, but hopefully not any time soon. The doctor said he thinks the cci is behind a lot of my symptoms, but that I'm not bad enough yet for a fusion. I hope not to need to.

Since getting diagnosed with cranial-cervical instability, I've been put in a hard neck brace to wear 70-80 percent of the time, cutting back a little as long as I can maintain "neutral" posture. I was skeptical, but it really helps all kinds of stuff--nausea, vertigo, blurry vision, tongue tingling, and headaches. So many symptoms that now I see were literally from my unstable neck/head. I've aborted all of these symptoms within minutes of putting the brace on, and a lot of them come back soon after I take it off. I'm trying to learn to hold my head properly, but never realized how far back your head has to be, and how "up in the air" my nose and chin are s'posed to be. Flexion brings on all kinds of disparate symptoms. Not that I want cci, but it's amazing that after multiple years, no one picked up on this!

Finally a little relief. I got squeezed into to get a repeat echo at Hopkins by the genetics folks who work on connective tissue disorders. According to them, my aorta is 3.3. Their genetics counselor said that the techs are trained at weekly aneurysm sessions, so she has a lot of confidence in their measuresments. I'll send them the old films so they can comment on any changes, but this puts me more safely in the normal range. I talk to the geneticist next week on the phone to see if we are both comfortable leaving things as they are (i.e. no radical med or exercise changes) and what my followup should be. I'm tempted to get all future echos with them, just for the consistency and for their expertise. Funny how 3 little millimeters makes such a difference. Whew. Now maybe I can focus on some other stuff that's less health-oriented.

Talked to the eds geneticist on the phone and she agrees there is cause for concern. For my body size, 3.6 is definitely big for people under 40, and in the upper ranges, for those over 40 (I'm 42). Plus, if the test is accurate, that's a big change in 1 year. The big differences in my life in the past year are increasing midordine, adding florinef, and regular, pretty strenuous aerobic and strengthening exercises. At first I was pretty freaked when I talked to her. She thought it unlikely that the measurement was wrong. She said that I need to change my ans meds, and exercise in such a way that keeps my hr under 100, and then repeat the test in 3-6 months. What I really want/wanted was to repeat the test or get a more precise mri or ct scan to really tell what's going on, before radically changing the med and exercise regimen that has gotten me functional. I don't tolerate bbs, which they would want me on. And stopping ans meds would make my bp and hr more erratic--maybe lower overall, but also with surges all over the place. And even on meds, my hr is still all over the map. It went to 120 yesterday when I was getting dressed! How am I supposed to keep it under 100 with POTS that we can't even adequately treat? And I have to think that if my aorta is weakening and thinning out, the swings in hr and bp from unmanaged dysautonomia can't be great. She told me she wanted to consult with a colleague of hers who really is perhaps the leading physician/researcher on connective tissue disorders and vascular issues to get his thoughts. She then called me back and his ideas were a little different. He wants me to repeat the echo at his institution where HE can read it and it's done by HIS techs, and also send him copies of the films from my two prior echos (the one where I was 2.8 a year ago, and the recent one at 3.6) so he can really compare himself. For now, he does not want me to fiddle with my meds and stop exercise, as he seemed to get that these have been very critical to my feeling better. Of course, if he determines that my aorta really is expanding, and expanding at this rapid rate, everything will have to be rethought. Unfortunately, treatments for dilated aorta and ans treatments are really diametrically opposed. They're trying to see if they can squeeze me in some time today for the echo--all last minute, and his institution is a good 2hours away. Otherwise, if it waits until next week, we were scheduled to return to Champaign on Monday, and this will totally mess up our move back to the midwest. On the other hand, I don't think there's anyone in Champaign to really handle this, and I don't have people in Chicago at this point, so I'll take advantage of the fact that I now have a connection to have my tests evaluated by the top guy here on the east coast. So that's the summary. I'm totally exhausted and stressed out by all of this. In the last week, I was diagnosed with chiari, cranial-cervical instability, and put in a neck brace, and then I hear this about the aorta. Then there is the prospect of having the entire regimen that has made me FEEL much better this year turned inside out. And all the drama happens at the last minute before we are to leave the area. And I'm someone who HATES uncertainty. If I know for sure that my aorta has really enlarged, I'll be bummed and upset, but I'll eventually deal. What I really want is to go for a power walk right nowand burn off some of the angst. But that gets my hr into the 130s. I really want new tests done asap so I know for sure what I"m dealing with. It's not good for me to feel so totally consumed by health issues, but until this gets sorted out, it's really hard to focus on other stuff.

I've really had it at this point. Feeling totally defined as a sick person. My pt tells me that my hard collar does keep me in the right head position. If this is how my head is supposed to be, it feels totally abnormal--like my nose and chin are stuck in the air. And holding off on exercise till I hear more is also frustrating. I'd come to really rely on it to feel both mentally and physically normal. Just walking to pt today, at a slow speed, my hr still goes to 120. Will wait and see what geneticist recommends. In the meantime, it's hard to get my mind off all this health stuff and just feel like a person with a life.

I've put a call in to the eds geneticist and am supposed to talk to her tomorrow afternoon on the phone. I"m having the echo report faxed to her. Until then, I should probably limit my exercise to a gentle walk. I hope that my ans regime of midodrine/florinef/ stenuous exercise is not to blame or doesn't have to be completely rethought because I FEEL so much better. On the other hand I need some firm answers about any real increase in aorta size, and if present, how to manage that while keeping my dysautonomia stable. I don't want to second guess my cardiologist, but I think the fact that she is not a connective tissue disorder specialist needs to be kept in mind. If I assume that an 8mm increase is accurate (i.e. if echo is at all reliable), even if I'm still technically in the normal range, that doesn't seem trivial. I don't want to push the envelope and end up with something really dangerous--much more so than my dysautonomia. Any other edsers out there who have to balance keeping bp high enough to feel well, but have to keep vessel fragility in mind? It's frustrating having all these "weird" conditions that relatively few docs are knowledgeable about.

I take 2.5 mgs for vasospasm. When I tried to increase to 5, my OI issues were a lot worse. I don't think I get hypertensive when standing, though. My ans doc was very concerned about how I'd react. I felt pretty fatigued, foggy, and faint on the 5. I did adjust okay to 2.5. No difference in ans symptoms. My hands swell a bit when I'm outside on it and I flush more easily.

I'm all doctored out. Saw the cardio today for an echo. Last year my aorta was measured at 2.8 cm. Now it measures at 3.6. If that's not measurement error, then that's not a small increase in a short time. 3.6 is at the upper limits of normal--but I'm also a relatively small woman. I left a message for my eds geneticist about how to proceed to see if this is a real increase, and then what to do. In the last year I've added midodrine, florinef, and a lot of exercise. I hope I don't have to reconsider those. What would you guys do about exercise till I talk to the geneticist? I think if you have an enlarged aorta, the target bp is under 110/70. On my ans meds I'm sometimes at 115/75. What would you guys do?

What shows up on mri is a 4mm chiari and an abnormally acute clivo-axial line of 135 degrees (normal is 165). This sharp angle compresses the brainstem when I flex my head. I also have a retroflexed odontoid. There were two other measurements that indicate instability and hypermobility (Harris and Grabb-Okes?) where I was into the abnormal range. If I do have surgery, it will be both a decompression and a fusion of skull to top two vertebrae. I saw the surgeon again today and together we decided that I'm not bad off enough for surgery. I have to learn to keep my head in a neutral position and he wants me to wear a hard collar in any potentially neck stressing situation. It's up to me to determine if/when things are bad enough for surgery. When I get back to the midwest, I'll seek out an opinion there. I'm relieved that surgery is not emergent. But he does think a lot of my neurological symptoms, some of my headaches, nausea, tingling tongue, vertigo, and ans stuff are from the instability. But I don't show any gross weakness.