arizona girl

That's interesting about your bp with atenolol, I was on it as well and had to stop because it was dropping by blood pressure too low when I sleep and I was still getting hypertensive when I was on my feet. But your saying you had supine hypertension not hypo right. I have read that about some people, but they usually have standing hypotension with it. So what position are you in when you get 90/50 readings? During my tilt table my bp and hr were high through out the test until my heart rate suddenly shot up higher and then my bp just tanked with my heart rate following took about 10 seconds and I was out cold. Thing is I remember standing there and the tech's were saying we can't get a bp reading on her, so I had no bp and I was still awake and standing at least for a few seconds anyway, then I started getting the symptoms I get before I collapse, stuffed ears, nausea, legs give out. These OI's that swing from extreme to extreme are seeming to be difficult to treat. Did you doc tell you why he called it a baro reflex type of OI? I know there will probably be a cause for this found some day, and as we read how similar or different our symptoms are and how this subset of symptoms responds one way and another set responds a different way. You can see that someone researching this on our site might be able to find the subtypes here among us and find the answers right from our community. The answers are among us, I can just see it.

with the arrest of my other doc and what he did to me. I'm going to take it tonight and hope I get some better sleep. Sleep is always a bit of an issue, but it has really been bad the last couple of days. So if any ones on it, I was wondering how it effects people with our issues. We all always seem to have different reactions to meds then the normals.

thanks tammy I'll do that. Cat Lady and Morgan do both of you have orthostatic hypertension as well. I thought the midorine was for hypotension Speaking of viruses I've had mono and I'm positive for cytomegylo and HV66 viruses. Also have an adrenal nodule that I'm still not totally convinced isn't a factor. Yea I'm getting that you have to try stuff, the beta's don't make either of you get hypertensive though right?

Hi ricky, I understand the struggle. I don't have answers for myself yet and still am waiting to have more tests done, but I do have some experience with the beta's After trying 4 different beta's, we finally realized that they only lower my heart rate and actually raise my blood pressure. Even at a much higher dose of 60mg xr inderal, it only took about a week for me to overcome it and once again have orthostatic hypertension. The high dose caused me to gain 12 pound in 6 weeks and made me have a constant headache and turned me into a zombie. My doc and I haven't figured out what to do next yet. Sorry I don't have any answers for you, but your wife isn't the only one here that is having this kind of response. I also did the salt loading and compression hoses and they didn't seem to bring any improvement either. I haven't tried the Florinef, Midodrine, Cymbalta because they can make your BP higher and mine is always high when I'm standing and when I talk. Does your wife's BP and HR also drop a lot when she lays down? I actually wake up sometimes because my heart is in the low 50s/high 40's and my BP will be like 90/60. I'm in the process of being sent to Dr. Grubb, I'm hoping he will be able to help. Don't give up yet! I'm hopeful that we are going to figure this out someday and that there are others on here that have similar symptoms to me. That means I'm not making it up and I'm not the only one going thru this ordeal. Hang in there, it is so nice how you are trying to help your wife, this has been hard on my husband, and he really just doesn't know how to help me.

I was doing much better emotional yesterday because I was so mad about what happened by this incident with the doc has made my heart rate and bp go even higher when I'm upright then usual. Along with my current doc we have realized that the beta's while they lower my heart rate are actually raising my blood pressure. I saw on this website that sometimes ace inhibitors are used, but I have know idea which one. Anyone here been on one that's helped you. My symptoms are orthostatic hypertension and pots, then syncope are being upright to long or some other trigger like heat or motion. I also get bracy and hypo when I supine for extended periods. Any suggestions would really help. thanks guys

My interview with the detective went well. The first thing I asked him was about being able to post on this forum about what happened and that I had notified everyone here about his arrest. The detective said he didn't see any way it would effect the case they are building, and it was okay for me to discuss it on here. I don't know if they will be able to make a felony charge in my case, because he didn't get as far with me. I hope though because my incident was documented by another medical provider at the center, they will be able to use it to show it was part of a pattern of inappropriate behavior. After listening to the questions the detective was asking, it appears that the doc may have also been recommending procedures be done when they weren't really necessary. It was a calm interview and I quickly realized that I had been much better at picking up that something wasn't right and protecting myself then some of the other women they have spoken with. The detective said most people aren't as alert as you on picking up that something isn't right. So I do feel good that I had done a good job of keeping it from going further. Though I'm still kicking myself for not listening to my instincts and getting out of there before the exam portion. I wanted so bad that he would be someone here where I live that could help me, that I stayed. I've since be told by that he wasn't going to be working where I was going much longer anyway because his contract hadn't been renewed. So it wouldn't have been an ongoing doctor patient relationship anyway. So, all staying for the rest of the appointment did was, getting to endure a very uncomfortable and stressful exam. I so wish I had just left when everything inside of me was going "Get the heck out of here." So a lesson if your instincts say run, then run!!! If your wrong, so you feel a little bit stupid, but then no harm has been done. It's okay to be rude to make sure your safe. I will get free counseling if I need it and will be notified about any court proceedings. They had an advocate waiting to talk with me as soon as the interview was over. I said to her how could a doctor in a position of trust add to an already sick patient's stress. She said "because they are selfish and they want what they want, and they don't care what they have to do to get it." SELFISH, I guess it could be that simple. I'm so impressed with how the investigation of the case is being handled and how kind and careful they are being with the women who are coming forward. I really hope they get all they need to keep him from ever having access to any patient ever again. Please keep all the women who were effected worse then me in your thoughts and prayers. Thank you for allowing this forum to be a safe place to talk about this, it really helps to get it out of your system. My lovely husband can only listen to such much, my being sick is hard on him some times, and we needed to be part of this new drama like a freaking hole in our heads. So I hope too that talking about this can help in some way any of you, who I hope never find themselves in a similar situation, but do find themselves in one, through no fault of there own. I know now that this can happen to any of us, even when we thought we were being careful.

Hi guys thanks so much for your thoughts. Mighty I was not referring to you, when I said there seem to be a lack of support, but your first post may have discouraged other members from posting. I am being interviewed by the detective today and I will ask if I can continue to use our forum for support on this incident. I will do what they recommend. We all see doctors here and this seems like an appropriate environment to come to get help, when you get a rogue doctor. Everyone knows just talking about it, helps get it out of your system. Also, in the unlikely circumstance, this guy retains his doctor's license, he could end up in your state. We all see EP cardio's here, I would hate that some unsuspecting member would ever end up in his care. Truly that was my main purpose to notify and protect us. They are actually interviewing the victims at the center for domestic violence, so I'm guessing they are going to be offering some kind of support. I will take it if they offer it. I'm a strong person, and very self protective, and this happened to me in spite of being that way, so it can happen to any one. These kind of people get away with it because we second guess ourselves and don't speak up and then the next women gets victimized. I'm so grateful to the first women who finally spoke up, if they'd been able to prove her claims it might not have happened to me. So I'll update you all after the interview today and will ask the detective the best way to handle this incident and any post regarding it in this forum. We are so fortunate to have this forum to turn too, hope everyone has a really good day!

Thanks suzy and jana for your support, sorry anything happened to either one of you. I guess I'm not understanding why my post should be deleted. Why? Isn't my identity blinded here. My main purpose for posting it was to make sure that any one else here that may have seen him in another state knows about it. Also nothing I've said hasn't already made it to the main stream media for all to see. I've already talk with the office manager and she said that they are fully cooperating with the police and will hold nothing back from the investigation. She also told me to contact the mesa police who are investigating it. He has been charged with two felonies so far. I understand innocent until proven guilty. However I know first hand exactly what inappropriate things he did to me. I'm being interviewed by a detective tommorrow afternoon. I will ask them if I should delete it. The detective told me they are getting a large volume of victims calling after it made the main stream media yesterday. So public venues do serve a purpose. I have nothing to hide and I'm frankly a bit surprised by the lack of support from the many members who have already read my post and given no support, of course not including suzy and jana, thank you much ladies. You all gave a lot of support to the post titled idiot doctor, what's the difference. I came here to notify and get some support for something awful that happened to me and that I've been sitting on for two months and probably would still be sitting on had he not been arrested. Some understanding please!!!

Yes, he touched me as well and pretty much exposed my breasts. I think I told some one else on here from arizona that I couldn't recommend him because of what happened to me. He was caught by a scrub nurse pinching another women's breast who was coming out of anesthia after a pace maker procedure. It's all over the local news here. His name is Richard J Lewis, educated at Mt. Sinai in New York. He has only been in arizona a few years. Don't know if there were other incidents in other states. The cardio center I'm going to fired him on thursday. I'm putting it out there in case some one else on here may have been treated by him in another state or here arizona. So I'm going to have to call the mesa police in the am to tell them he assaulted me as well. I was so stressed by what happened I did tell the cardiac rehab therapist what happened about 6 weeks ago, but told her it was not to leave the room, because I wasn't sure if I was overreacting to his exam. Now I know I wasn't! My radar was right on and I should have listened to it. Geez the things we keep to ourselves because we don't want anyone to think we are crazy. So I'm on here in the middle of the night because I can't fall asleep and I can't stop thinking about it. I all can say is thank god for the rehab therapist, because she went to the office manager without identifying me and told her what I had said. The manager told her to write it up and document it. Hope that meant they started watching him and that is how he finally got caught. I talked with rehab gal today and she said, "Oh I've been thinking about you all day!" She assured me that coming forward wouldn't effect my care and the doc I'm seeing now is very good and takes care of her own father. She said everyone is relieved he was fired. I guess other care providers who worked with him were starting to notice he was being inappropriate. How could a doc do that to someone who is already stressed from being ill? I should have walked out of the exam room and declined his examination at the 2nd appt, after I felt exposed on my first appointment. I really wanted to see my TTT results, and he knew about dysautonomia, so I thought he'd help me, so I went back. Thats how desperate I was to have someone help. I waited a month to make my 3rd appointment because I couldn't bring myself to see him again, then I realized I could go back to the female doc who sent me to him. She is so great and very smart and is really trying to help me. I get to tell her next week at my appt, what he did to me, because I didn't tell her yet, that should be fun. So listen to your instincts my friends and if something doesn't feel right, move on it, even if it feels socially uncomfortable to speak up. Rock that boat!!! Thanks for listening!

hey steph, I'm in the process of being referred to him as well. I can't get my appointment though until they receive my records from my referring doctor. I did however talk to the appointment scheduler and she said the first appointment is just a consultation. I hope that's not the case as I really don't want to have to fly there twice. When's your appointment?

It really depends on the activity and the day how long it effects me. Good days and low activity a quick rest and I'm back up. After traveling or physical stresses it can be days to weeks before I'm better.

Ru, first your doc is right about switching around, it can cause rebound hypertension. Stressing about it can also make it worse. Remember our blood pressure acts weird because it's our body's way of trying to get blood to brain. It is not the same as someone who has hypertension all the time. My BP and HR jumps around depending on what position or environmental stressors I'm experiencing, it does this with or without meds. This may be whats happening with you as well. Real simple to check. First thing when you wake while lying flat without moving around a lot check your BP. That's your baseline, then check it after sitting a bit, then check it while standing after 1, 5, 10 minutes (poor mans tilt test), my BP continues to go up the longer I'm on my feet so I check mine as I stand longer. All I have to do to bring mine down is lay down. It also is starting to appear that no matter what BP meds I'm on, I will eventually overcome the BP meds and my BP rises. It is amazing how the body compensates. I stuck with a higher does of Extended release propanolol for 6 wks. It was to much and my BP still got high with it. I am working with my doctors' to figure out what next so I don't have any answers yet. I'll let you know. One other thing you might check. If you wake up in the middle of the nite, like me, I check my BP before I move, and I have low BP. I suspect that the hypotension is what is waking me, I usually have night sweats when this happens as well. Do try to stick with one for a least a few weeks, most meds take about 6 wks for your body to adjust to, as any pharmacist will tell you. Of course, you should slowly wean down if they aren't working for you. DON'T ever stop a beta suddenly as it is very harmful, you must wean down and start replacing them with something else. I have more but I have to get my hair cut. Hope this helps. Remember to lay down if it gets bad, and you'll be fine.

This happens to me too. I wake up every morning biting my bottom lip with my arms ridged as a board and my hands in a fist digging my nails into my palms. I have bad burning pain from elbows down and that pins and needly vibrating feeling. During the day hands, arms and feet and legs get pins and needles and fall asleep with just slight pressure or posture. I'd love to get it to stop too, especially when I'm waking, because I don't think I'm sleeping well because of it. I hope my doctors can help me with it soon. I'm still waiting for answers from them.

I saw dr. raj when I went to vanderbilt. I was naive and didn't ask what tests they were doing. I left without getting a tilt table done, which was a mistake. I'd inquire what tests they are doing before you get there. If you think a tilt table is important insist on one. Not sure what symptoms you are presenting with, I do think that matters. I typed everything up and made a copy to give to the doctor and kept one for me as a reference. Also their research is big on salt loading and blood volume. That's great if you are primarily hypotensive and fainting a lot. That wasn't so good for me. My tests at vanderbilt showed I was hypertensive. They didn't even address it with me, I wasn't knowledgeable enough when I went there to know that hypertension takes you in a different direction with dysautonomias. My recent tilt table confirmed and duplicated the syncope or pre syncope that I've been having most of my life. That only happened after first 20 min phase of the tilt was over and they started the second 20 with sublingual nitro. Thru out the test I had hypertension and tachycardia, then right before syncope my heart rate spiked suddenly and then my blood pressure dropped suddenly in seconds and then I passed out. These results confirmed the dysautonmia, but I'm still working on the cause, primary or secondary. I will have to have more testing done to determine why my symptoms are happening. A tilt table sooner may have gotten me to treatment faster. So, don't just give yourself up to the doctor god's, like I did. Know what you want and make sure you get it. Love to hear how it goes and how your symptoms are presenting. arizona girl

Thank you! Thankful. This is helpful. My pins and needles usually are from the elbow down and the knees down. They also fall asleep with very little pressure. I pretty much wake up every morning with stiff burning arms and some times feet. Is this the same pattern as yours? Also do you know what kind of neuropathy effects the digestive track? I think I get the splanich pooling when I sleep at night, my blood pressure drops into the 90s/50-60s. I also have lots of tiny pin prick size red spots all over my torso and legs. I'm wondering if that's from pooling blood as well. If this is the same test, I'm really not looking forward to being tortoured again. That TTT was incredibly painful for me and I was sick for weeks after it. Thanks again.

So, I'm not sure what to think. Last week I wrote him a note with a copy of my recent records from my cardio, saying my cardiologist wanted my records from him. That I had, had a positive TTT, and an unexplained colon rupture, that small fiber neuropathy can be a part of the dysautonomia and that I had frequent pins and needles in my arms and legs, and my skin was frequently cold to the touch. Thanked him for assisting my cardiologist and said if he had anything to offer that would get me functional again, it would be appreciated. I didn't ask for an appointment and really didn't expect to hear from him. He after all was the one two years ago, that wasn't confident on Dr Yan Go of UCLAs findings that there appeared to be some kind of dysautonomia. He said there where no doctors in arizona and I should go to mayo. Like he wouldn't believe Mayo, but not UCLA. His doctor's notes on me say I appear to have anxiety!!!! I also said something about that in the note in a nice way, that anxiety is often misdiagnosed in pots. So, I really didn't expect to hear from him. So I get this call from his office yesterday saying they want to do an emg, this week. No reason why! No appt to talk with me first. So is this an answer to prayers? Like our friend here that got appt at cleveland clinic out of the blue! Will this test help me figure out anything? I think I had an emg years ago after a car accident herniated my L5/S1, I remember it being very painful to me, but that the test came back normal, though I think I had a hyper painful response to it. So, if it comes back normal, then what??? It is so interesting how once you have had a positive tilt table, all of the sudden you are taken more seriously. Like that test opens doors that wouldn't open before, even though all symptoms pointed in dysautonomia's direction. Well I'm cautiously optomistic, any advise to you all have that will help with the test or question I might pose to the doc, would be great!! The appt is tommorrow (thurs) at 2:30.

Hey you all, PCOS is something I know very well. I was diagnosed with it after a miscarriage 12 years ago. Dani, a regular endocrinologist can help you, you just have to find one that is up on hyperinsulinemia which is what causes pcos. Since, you are in arizona, Dr. Mishra at endocrinology associate in phoenix, is who first treated me. PCOS is basically female metabolic syndrome or syndrome X. It got named after just one of the many symptoms associated with it, the cysts on the ovaries. You can have metabolic syndrome with out cysts on your ovaries. The most important test in my opinion is the fasting insulin test (not glucose, insulin). You can also have a side by side glucose tolerance test with a insulin tolerance test. Other tests that can show abnormally are the FSH LH female hormones, they can appear in the normal range, but if they aren't almost the same number, ie. one is much higher then the other, there is an imbalance. That's how mine were. Also have your male hormones tested. If you have facial hair or hair where it shouldn't be your testosterone may be elevated. A lot of docs in correctly think the male hormones have to be elevated to have pcos, that isn't always true, in my case it is not true. There are other tests as well. If you google pcos or hyperinsulinemia you will find a ton of info. Also you have to ask your doctor for the fasting insulin test, they will almost never offer it up on there own. A reproductive doc is more likely to though. They use glucophage to get the female cycle to start ovulating again. PCOS can lead to both diabetes and heart disease, not just infertility, so it is a serious disorder. My cholesterols are really high. My blood sugars so far are normal. I also was not over weight when the cysts were found, nor do I have facial hair. There are thin people that have this. Also I came across some research that shows the high insulin can cause autonomic dysfunction. Yes the glucophage can be rough, many adjust to it, it does help, also they are now offering the injectable diabetes drug byetta to treat it. I may go that route after I figure out all the pots and colon rupture stuff I'm dealing with. Get a copy of your labs, so you know what tests they did. BTW what are your symptoms of pcos? I have syncope with orthostatic hypertension and tachy, I also get supine hypotension and brachy. I don't know if I have the hyperandregenic type of pots yet, I'm stilling waiting to get all that stuff worked up. If you have any other questions about pcos let me know.

Thanks julie, I saw a gene doc who did the col3a1, it was normal. Didn't have the others done. I'll have to look at the symptoms of LDS again. I remember reading about it, but not what I read. I think I would have remembered if it sounded like I fit it. But that's a good idea to re-visit. I gave the cardio doc the print out from this website of mechanism and causes and treatment. There are so many other tests to still do, especially with this hypertensive variant that I have along with the syncope. I hope the rupture was one time too, but we do have a family history of colon ruptures, I just have lived a much healthy lifestyle then my upper generations who've had it happen. If it was caused by the accident, it would be a relief in a way, cause it would mean it wouldn't happen again. thanks you again for the input, it does help!! My prayers with you and yours as well!

Thanks you for the input all of you. Unless it is EDS doesn't seem like the gastro problems progress to rupture. No one has responded that this did happen to them. I guess that helps narrow things down a bit. The cardio I just started seeing is doing a conference call with me on friday. She wanted all my med records to review herself. I think she used to be a researcher. She knows things about metabolic syndrome/pcos, that I didn't even know about, and I did a lot of my own research. She is aware that we don't know the cause of my dysautonomia and said she would help me figure out what to do next. She seems to get me and I could see her wheels turning trying to figure out my complex medical symptoms. I really hope she is able to help me figure this all out. It would be real nice to have an actual advocate in the medical field, so I don't have to keep trying to figure it out by myself. I've done a good job of that, getting heard and getting the right tests done though is always a challenge isn't it? Thank god that the TTT was positive. Isn't it funny how one positive test suddenly legitimizes your situation and all of the sudden, well maybe you don't have anxiety or depression or a personality disorder. After all the autonomic system is supposed to work without you even knowing its doing what it is supposed to be doing. Of course when it's not working right, we all know what that feels like

Good luck today. I had one recently. It was in two phases. It only goes to the second phase if you don't pass out/syncope during the first phase. Of course I didn't pass out during first phase, but I did get orthostatic hypertension and tachy. It was painful for me to stand there and not move, I have a bad back and hip. It caused a lot of pressure on my heels as well. I just had socks on, I would where sneakers next time to cushion my feet. If they let you where your sneakers or comfortable cushy shoes, do so. The second phase really is to see if you will pass out, as they want to see if you have syncope as well as tachy. They sprayed sublingual nitro under my tongue. This is to trigger and duplicate stressors that you might get in your real life. If you don't pass out you don't have syncope just pots or maybe they also see orthostatic hypotension. If you think you can handle feeling bad for about 30 minutes, and you know you aren't allergic or prone to some really adverse reaction, I would do the medication. It doesn't take that long to recover once they put the table down. Of course, if you pass out in phase one you won't need the medication. Also they should put an IV in so they can give you fluids to help you recover. The medication did duplicate exactly what happens to me when I collapse. Without the meds maybe it would have happened eventually, but who wants to stand there that long until you do. I think it speeds the test up and it's over faster. Also if you pay attention to what symptoms your are getting as it happens, it is also very enlightening and informative. For me it documented that I get orthostatic hypertension w/tachy and then a sudden spike even higher in heart rate and a very sudden drop in blood pressure, then drop in heart rate. I was still standing without any readable blood pressure. Then the duplication of symptoms happened. Pay attention to what your first symptoms are ... This is the part that is important, because it forewarns you that your about to faint. For me first one ear lost hearing and felt plugged up then the other, then the nausea, then the legs giving out, and me saying "okay this is what happens to me, please can you put me down", then I passed out, which I didn't realize I had done until they told me. So now I know if my ears start to ring and plug I better sit my *** down fast, Or I'll be kissing the ground. I hope this helps! Let us know how it goes.

So the main reason I'm asking about this, is I am wondering if anyone else has had there gastro problems advance to a colon rupture?

Morgan, do you eat a lot of dairy, cause I was having that yellow burning acid stool, I stopped eating it about a month before the colon rupture and haven't had it since. I'm back to things not moving. I had my gall bladder worked up twice with that scan the first one was 50/50 because of duplication of symptoms the second one was very normal. So they sort of ruled out my gallbladder. Also you can get your esophagus stretched a friend of ours had it done 3 times, they were more aggressive the last time time they stretched it and he hasn't had a problem since, it's been a couple of years now. I think to the accident might have contributed, I'm going to have an attorney handle it. I've already had follow up colonoscopy and they found a few diverticuli in each segment of my colon, but nothing that looked like it would pop. My rupture was in the sigmoid, most common place of rupture. Surgeon said it will probably happen again at some point, so I'm sitting here playing russian roulette with my guts.

I haven't been able to work full time since my 30's, still worked part time for a while, haven't been able to work at all for about 10 years or so. I'm now 52! I made a big mistake and didn't file for disability in a timely matter. Yes, there is a stale date in order to file for it. I didn't know that. I put off filing because I kept thinking I was going to find out what was making me sick and that I was going to get better. Believe it or not I still have that hope, that I will improve, once I get the proper treatment and they finish all the testing. I don't really look sick and I try to keep a smile on my face, so many don't realize how hard it is for me to do things and don't even realize that I'm not well.

Hi suzy, they only tested for the vascular one and it was negative. I'm only mildly mobile so I don't really fit any of the others. I wonder about the accident too, so far no one's said they think so, because it was 9mos after the accident. But I haven't had any more of those bright yellow acidy passing, since the colon rupture, then again I haven't had very much dairy either. Maybe I should pig out on some dairy and see if it comes back. Also, I had, had a colonoscopy at 50 and the doc had said I had the colon of 30 year old, less then 2 years later if pops, go figure! Thanks for your thoughts. I really hope they get you to the right place soon, but like me, it sounds like they haven't finished testing and trying things yet. Dialated does that mean it's to wide or to tight? A friend of ours was to tight, had trouble getting found down. He had to have is stretched a few times, the last doc said they weren't being agressive enough and really stretched it, and he's been fine since. I sure hope you don't miss your doctor appt, that's really important. I hope your hubby gets better fast. Isn't there any one else to drive you?

I had a spontaneous rupture of mine in august and we still don't know why. At the time of rupture It felt like my intestines clamped shut and nothing could get thru, I felt some air trying to move thru, then I felt something pop and very sharp waves of pain started. Nine months prior I did get seat belt bruising in a 50mph car accident, but ct was normal at the ER. Also during that time I developed very bad lactose intolerance and stopped taking in dairy a month prior to the rupture. They did find a few diverticuli in all segments of the colon post recovery, but there had been no abcess at time of rupture, which usually happens prior to one of those rupturing. It was a free perforation, a small pop that caused a bit of air and fluid to be released into my abdomen and caused a very high white blood count. Miracle of no surgery as I responded to high dose antibiotics and the pop appeared to close on it's own. Spent 4 days in hospital and still haven't recovered to where I was before it happened. As many of you with gastro issues, before this happened I had problems getting full fast, constipation to loose watery yellow acidy stool. Bloating, belching and passing gas. Can't tolerate any type of tight clothing around the belly. So I guess I'm wondering if this is what happens to most of you, or if any of you have experienced a near colon rupture or have had one? What did you doctors say about it in relation to the dysautonomia if you did? I may still have to have surgery and my blood pressure always drops during minor medical procedures, I worry what will happen with a major surgery! I also just found out my sister was b-12 deficient because she can't get it thru her digestive track. So if any of you have been down this path, how did you manage the whole thing?