arizona girl

It's true about the big hospitals and their research protocols. I've been to UCLA and vanderberbilt. UCLA was specializing in sleep disorders and chronic fatigue, she said go to mayo, but did have me do poor man's tilt for a few months and when I saw her the second time, she said don't let them tell you, you just have pots, there are so many things that can cause it including a small cell cancer. GO TO MAYO, she said. So I went to vanderbilt as they were on my insurance. Their research is all about salt loading and blood volume, and they didn't bother to do a TTT test on me, but put me on there treatment regime. Two years more no improvement, was referred to a new cardio where a TTT was finally done, with crazy readings. Wow, I guess I really did have something wrong and the only thing that was crazy was how my body was acting to standing up. So everyone be tenacious and keep on moving on and asking for the right tests. Dinet has done a good job of listing what to have done and causes on the main page. This forum is the best guideline we could follow. If it fits with the info here then you will eventually whittle it down to the correct diagnosis. Not that is won't seem like it is taking foreverrrrrrr!! Making a crazy diagnosis just shows a lazy doctor, ignorant one or doctor who has their own personal agenda going on. But most of us have already started to figure that out haven't we? It's just a shame though the emotional damage that is done when they get it wrong. It's hard not to take it personal and think well maybe it's me, or why do I keep getting doctors who don't really care. I'm grateful I finally seem to have a good caring group of doctors, but it sure was painful finding them.

It's true about the big hospitals and their research protocols. I've been to UCLA and vanderberbilt. UCLA was specializing in sleep disorders and chronic fatigue, she said go to mayo, but did have me do poor man's tilt for a few months and when I saw her the second time, she said don't let them tell you, you just have pots, there are so many things that can cause it including a small cell cancer. GO TO MAYO, she said. So I went to vanderbilt as they were on my insurance. Their research is all about salt loading and blood volume, and they didn't bother to do a TTT test on me, but put me on there treatment regime. Two years more no improvement, was referred to a new cardio where a TTT was finally done, with crazy readings. Wow, I guess I really did have something wrong and the only thing that was crazy was how my body was acting to standing up. So everyone be tenacious and keep on moving on and asking for the right tests. Dinet has done a good job of listing what to have done and causes on the main page. This forum is the best guideline we could follow. If it fits with the info here then you will eventually whittle it down to the correct diagnosis. Not that is won't seem like it is taking foreverrrrrrr!! Making a crazy diagnosis just shows a lazy doctor, ignorant one or doctor who has their own personal agenda going on. But most of us have already started to figure that out haven't we? It's just a shame though the emotional damage that is done when they get it wrong. It's hard not to take it personal and think well maybe it's me, or why do I keep getting doctors who don't really care. I'm grateful I finally seem to have a good caring group of doctors, but it sure was painful finding them.

Hi welcome to arizona. There are a few of us that are from az on the forum. I saw a Dr. Theresa Grebe in downtown phoenix to have the genetic testing done for Ehlers Danlos vascular after my colon ruptured. I don't have it, but needed to rule it out. She was very nice her primary practice is pediatric genetics, but she does see some adults. I don't know if she treats adult EDS patients, but she would be a good place to start for the EDS. Well the mayo here wouldn't treat you for pots anyway, they send you to rochester, don't know if they treat EDS. I went there before I knew what was wrong, then later when I found out it was pots they said they don't have any doctors here to treat it. I felt like they wasted my time and money. I know there are a few other arizona EDS's here. Don't know if they are happy with their EDS docs or not. Hopefully one of them will chime in. From what I do understand here on the forum, is that it is very common for EDS patients to have secondary pots because the blood vessels are so stretchy that your blood pools. I'm not sure what your symptoms are that make you think that it is hyperadregenic? I suppose if your blood is pooling because of eds that you could have a hyper response as well, as your body compensates to get the blood to your brain. I can only speak to it from what I deal with as I have been diagnosed with this form of Pots, but pots in my case as in your is secondary. My diagnosis was made by having a tilt table test done, having my supine and standing catchecolomines (epinephrine, norepinephrine, dopamine) tested, and a bunch of other tests to rule in or out other conditions. A hyperadregenic diagnosis is made when your norepinphrine jumps significantly from supine to standing, usually causing standing hypertension. Mine went from the 400's to almost 1200 just from standing. I also have orthostatic hypertension when standing and talking. The TTT showed the BP/HR elevations and then a sudden drop after nitro showing syncope as well. All this led me to see a neurologist who does skin biopsy to look for small fiber neuropathy. The neuropathy is autoimmune and causing all my pots symptoms. Most if not all of my autonomic functions are impaired. So which doc to see and what type of treatment are going to be different depending on what is causing yours. I know my cardiologist can order the test to see about the catchecolomine, but she is still learning what to do with the info, but at least she knows about the test. She was asked to do it by Dr. Grubb in toledo (the pots guru) after I saw him and he diagnosed it. In my case though my cardiac symptoms appear to be caused by the neuropathy, so she is letting my neurologist drive the treatment plan right now. I'd be happy to give you there names if you think a cardiologist or neurologist would be helpful. My former cardiologist Dr. Mary Grace Warner is now practicing homeopathy. I loved her and was sad to see her leave her cardiology practice. Now though she can treat the whole body and she was already using integrative medicine with natural treatments when she was just a cardiologist. So if you want natural I would trust her judgement. Homeopaths don't utilize insurance plans though, so out of pocket. So hope this helps. You can pm me if you want more details. Where in arizona are you?

Yes, it just means that those locations didn't sweat in the normally expected time. Which suggest that there is nerve damage, mainly small fiber. The skin biopsy is now the gold standard to prove small fiber damage.

Erika, Nunntrio asked the same question under the post "Sweat test question?" Can you go read what I wrote there so I don't have to type it again. The short answer is yes small fiber damage can cause autonomic neuropathy. GBS can also cause it as well as motor (large fiber) function nerve damage. It would explain pots symptoms, but not your inability to walk when your upright, that would be large fiber. You probably have nerve damage in both types of nerves. How much research have you done on GBS, as it can have longer lasting effects even after you have recovered from the initial episode. I wouldn't dismiss it as a possible cause for your symptoms today. There is a simple non subjective test for small fiber that is better then the sweat test to determine if you have it. It is a skin biopsy to look for small fiber nerve damage, it also looks for other damage too. I had this test without having sweat testing and I do have small fiber. I have many autonomic and pain symptoms, but I can still walk. I do get a little bit jittery or sweaty if I'm upright to long, or talk to much because my body is pumping out excessive norepinepherine to compensate. Have they measured your supine and standing cathecholimines yet? You might want to find a neurologist that specializes in skin biopsy for small fiber, they will have a better understanding of these types of neuropathies. There are many neurological disorders that are more common that neurologists base their practices around, which narrows there focus. This is less common, so you need to find a neurologist that specializes in this area. I'm lucky to have one here in phoenix. They may be able to refer you to someone in your area. Also if you think that psych evaluation was wrong, then you should challenge it. Submit a letter to that doctor to be added to your medical record stating that you disagree and why. Really other then an observation what other type of psych evaluation did they do on you to confirm it. Seems pretty flimsy to me. Plus you said you had a psych evaluation by some one who already said that wasn't the problem, submit documented notes from that doc as well, and file a complaint with the hospital and medical board. You can't let those notes stand in your medical record, as it will color any future diagnostics. Of course, if you have copies of everything, then I would leave those particular doctor's notes out before giving them to any new doc. They are too busy to go getting copies from your other doctors, if you are nice enough to provide them yourself.

Actually it is a skin biopsy not a nerve one. It is also way less painful and with less left over side effects then a nerve biopsy. Also at Vandy, I went there too, weren't you mainly being tested at their cardiovascular center? Did you see neurologists when you were there? From what I understand there are only a handful of places doing the skin biopsy in the US. I do agree though if vandy put you thru all those tests and they said you have pots, I would believe them. On my tilt test my bp/hr went up up up, until after the nitro I had a sudden drop and passed out. So I don't agree with the tx's doc, if he is dismissing you if it went down. You can have any variation of abnormal bp/hr response. My diagnosis was pots with syncope. After my biopsy I know that it is a neurological condition exhibiting cardiovascular symptoms. The good news is my neurologist ordered plasmapheresis as he believes I have the neuropathy due to an autoimmune condition. I have had 8 treatments so far and amazingly my symptoms are improving. The great thing about this treatment is we are going at the cause and not just treating symptoms. I haven't taken my bp meds in over a week. Hope you get your answers soon. If your in texas your not too far to come see Dr. Levine. He also test for all those scary causes listed here on dinet to rule them out.

I believe both those tests look for small fiber neuropathy. There is actually a better test that can do that now and will show for sure if you do or do not have small fiber. It is a skin biopsy. In arizona if you go to the Phoenix Neurological associates web site they talk about it there. You can google skin biopsy for small fiber and see if there is a location closer to you that does them or call phoenix neuro and ask them where to get it done. My Doc. there Dr. Levine did the biopsy on me they also do the labs on the specimen as well. My results showed that nerve fiber density was below normal. I also have symptoms of autonomic neuropathy. The small fiber nerves are found in your peripheral and in all parts of the body that control your autonomic functions. An emg usually shows whether the large fiber nerves are effected. Large fiber nerves usually effect your motor function. Knowing what your symptoms are will point you in the right direction. You can have only large or only small or you can have both, that with type of symptoms will provide the correct diagnosis. Google large fiber nerve damage and see what neurological conditions for that pop up and see if one of those fit your symptoms. Your doc may be right saying that because the Qsart was normal you don't have autonomic, because he was looking for small fiber damage. I also don't think Qsart can 100% exclude small fiber. The skin biopsy is now the gold standard. Were you diagnosed with pots because you had a positive tilt table test? Neuropathy is not the only condition that can cause the pots symptoms. If you look on the main dinet page under Pots Place you can read about the many different causes under the sections causes and mechanisms. That is what helped me know enough to ask for the small fiber testing and the skin biopsy. Hope this helps!

Hi I have nodules too! All blood tests have been normal. One did grow. I do know this though. Any nodule needs to be biopsied at least once to make sure it isn't thyroid cancer. If there are changes they may continue to biopsy them. If your blood tests are normal, then you should have it biopsied for sure. Nodules can just be there and cause no harm also. But they do need to be worked up and then watched. I have to have mine ultrasound every few years. So far no problems with them. The vascularity doesn't sound normal to me. None of mine many studies have ever used that term. I'd ask your doc for a biopsy, just to be safe. The biopsy is pretty simply and you don't feel much. If they numb it that is probably the worst part. Hope this helps.

Maxine, I know this is scary, but you are finally going to see doctors that should be able to do right by you. I recently had to have a breast biopsy, it took two months of going here and there before I finally got my results. They were just fibrocystic micro calcifications, not early cancer. The biopsy wasn't lovely, but it was the wait to find out what it was that was stressful. In my heart I knew they weren't going to find anything and they didn't. The delays are what get you, because your mind goes to dark places if you don't take charge of it. You do have good cause to be concerned with your family history, I can see that. I decided though that I wasn't going to go there until I had a test showing me I had a reason to go there. No need to go there until you have a concrete reason. You are strong and have been following your instincts to push to have this done the way you think it should be. You know in your heart what is right and even if it is hard and takes longer to get there you stick to your guns girl. Don't give up now, when your answers are finally on your doorstep. Keep on pushing through you can do it. Finding someone who hears and sees you is a blessing, this nurse is that person, now things will move along faster. It took me two years to get a tilt table test done and once the test was positive, finally the doors to treatment flew open and I am now getting plasmapheresis for small fiber neuropathy and I am noticing changes. It has taken over 20 years and different diagnosis to finally get to the one the connected all the dots. Also you can have more then one thing going wrong that need to be managed together. I have had colon issues too! A year ago August my colon ruptured and I survived without surgery. I waited four hours to go to the hospital. I was having sharp pains that came and went. It took a nurse on my health plans nurse line, to tell me that's not normal, go to the ER when she heard me moaning during the pain. So don't use pain as a tool to decide if it's bad enough. I think our judgement on how painful something is, is blunted probably due to nerve damage. The fact that it is hurting more then usually is enough to pursue it. I had a lot of symptoms for almost two years before the rupture and no one listened to me. Last Oct I finally had laproscopic surgery (more then a year after the rupture) to have part of my colon removed. Though the rupture had closed, it kept getting reinfected. (they are keeping an eye on your white blood count?) The surgery went well my doctor understood about the autonomic dysfunction and they properly addressed those issues. Possible cancer in the colon should not be the only thing looked at as diverticular disease of the colon can rupture and cause death if it isn't taken care of properly. You may benefit and feel better if some of the colon is taken out. It is amazing what they can do with laproscopic surgery. It is so much less hard on the body and you recover so quick. I was driving a week after they took out 10 inches of my colon. I also haven't had a return of any of the symptoms I had prior to the surgery and a least that part of my body feels so much better. So I'm going to pray that they can connect all your dots so they can start treating you in a way that your life and health are better. Here's a big, big hug!! Tuesday will be here before you know it. Believe this time they will get it right! Let us know how it goes when you can.

I'm praying for you girl. Hope you are feeling better sooooner rather then later. Sounds like they are finally seeing beyond you to what the real problem is, that is always something to be grateful for. It is just unfortunate that it takes getting very ill to finally be heard and seen. A big hug to get you through to better days!!

Well it is one of the reasons, there are many, if you look under mechanisms and causes on the main dinet page. I too had a positive skin biopsy for small fiber neuropathy. It seems that most of my autonomic function have been effected. Like Pots, small fiber autonomic neuropathy can be caused by several things. My neurologist did a bunch of other tests along side it to make sure they weren't causing. Most of the time it is idopathic, which means they believe it is autoimmune but they haven't be able to identify the autonimmunity yet. I am actually starting a course of plasmapheresis today to see if we can pull the autoantibodies out of my blood and improve my symptoms. I had a catheter put in yesterday and will be doing the plasma two times a week for a month. If I improve then we will try to get the insurance to let me have IVIG to infuse new antibodies back into my body. I don't know if it will work hate to even get my hopes up. If it doesn't work will be back to just trying to manage symptoms. I guess I'm a bit of a pioneer on this one, as most here have just been treating symptoms and no one else here as done this kind of treatment yet. If it does work for me it may be an option for others with small fiber neuropathy. I'd love to hear what your doctor has to offer you now that they have confirmed it.

I didn't have to pay up front when I went. However Dr. Grubb is an in network provider on my health insurance plan, so that may be why. So check and see if he is in network first. Yes, I did need to send all my records first, But ended up getting an appointment much sooner then I expected once they had them. Also they didn't do any additional testing while I was there. I'd had most things done already, he asked my local doc to do one more test. He did however make an accurate diagnosis and gave me a new treatment plan. His wife has brain cancer, so this may be effecting his availability right now.

Deb, how much time have you done researching on dinet's main page? If you go to the Pots place section on the left, you will see causes, click on that and a list of causes for pots will pop up. Dysautonomia or pots is a set of symptoms that are caused by something else. Say you have a positive tilt table and get a pots diagnosis, that is not the final diagnosis because then you will have to find out why you have it. You may be a head of the game already because anemia is one of the causes of pots. It is right there listed under causes. A friend of mine ended up having an ablation for her high heart rate and it turned out it was being caused by her anemia due to massive monthly menstrual bleeds. She had a hysterectomy to stop the bleeding and is now much better. I myself have it due to small fiber autonomic neuropathy. While knowing that is great we still don't know what has caused the neuropathy and are assuming it is autoimmune. So I am having plasmapheresis to see if antibodies are causing it. There are a lot of people here that have it because they have EDS or joint hypermobility. The fact that you already know your anemic may be why this is happening to you. So don't just blow it off! Hope this helps you.

Hey dani, I wasn't able to have kids because of my medical problems, so I can't speak to the delivery process. I hope it all goes well and you have a healthy baby. I know the arizona gals were all going to try and have lunch and meet up, and that didn't happen. I live in chandler, if you need any help or support. Hopefully, you have a lot of friends and family to help you out. Let me know if you need anything. I will be praying that you have a very good outcome.

Jana and Erika, you are both in my prayers and I will ask the women in my bible study to pray for you today. I don't know what your belief systems are but prayer of any kind couldn't hurt. I hope you both find out soon what is wrong. Erika, I don't think you need a psych evaluation, I believe you can refuse to have one, frankly under the circumstances they are ordering, I would be suspicious of any psych diagnosis they might conveniently come to. You don't need a questionable psych evaluation in your medical record. I too believe this sounds like some kind of rapid onset neuropathy. Have they done a skin biopsy on you yet to see if you have small fiber neuropathy. Considering your history, I think it is medical malpractice not to do another spinal tap on you. I agree with the others don't let them ship you off to a rehab center until you know what is wrong. A patient advocate in the hospital is a really good idea. If you can bring in someone not connected to the hospital you are in, maybe this doctor who thinks things don't need to be done, can be challenged. It's time to make as big a stink as you can muster up. Or get yourself the **** out of that hospital to another one. You are not crazy!!! Big hug!!!!

Thanks again everyone!

Hi guys, sorry I didn't respond sooner. Was sidetracked by abnormal mamo, microcalcifications were found and I have to have a biopsy on tuesday of my right breast, should know results by next friday. I needed another problem like a hole in my head. I'm sure they will just turn out to be calcium. No way to tell for sure without taking a closer look. Ahhhhhh! Anyway thanks for all your replies and thoughts. It looks like my doctor is giving me a treatment choice that is just a bit more then treating symptoms, which he is ready to do as well. His practice does a lot of neuropathy research and also does IVIG infusions as well. The truth is they have really only been able to test for small fiber with a skin biopsy for about 10 years. So now that they can prove it, I guess the way to treat it is still new too. It seems he is applying the treatment plan that he uses with other forms to treat me too. If it works I'm sure it will further support the research and become a standard treatment option some day. My cardio and primary agree. So as soon as I know that biopsy results are negative I'm going to schedule it. I'll let you all know how it goes, if it works it may be an option for some of you as well. I do think that some of you here that haven't been told it's secondary do to another condition should consider getting a skin biopsy to rule in/out small fiber. Once you know something your treatment choices do change some. Pooh, what type of doctors were your autonomic specialists? I've seen a neurologist and two cardio's, one of which is Dr. Grubb. I asked him about the IVIG and he said it is an option, he just didn't like that the infusion is made from many donors. You make a good point about the blood volume. I have never been tested for that, I'm assuming I pool in the lower body, but don't know where. I'm one of the few where my BP/HR go up probably due to the adrenaline surge. I tried to ask the med assistant and she didn't know, I think I should ask the people that do the procedure, they will probably know better. I do know that this is a treatment that is used for many forms of neuropathy and I do have small fiber neuropathy. Oh Bella, those muscle biopsy's are suppose to be so painful. Please let me know what you find out. Do you know what they were looking for? Sugartwin, I so agree with you about finding out if at all possible the reason for the symptoms and that pots symptoms are symptoms of something else. As soon as that TTT was positive it opened new doors for testing, as it wasn't "well honey you just have anxiety or fibromyalgia" The thing is now I'm at the, well what is causing the small fiber which is causing the pots symptoms, many things can cause it too. I'm sorry it turned out to be EDS that is a tough one to live with. You said that your treatments have really helped out with the pain in stuff. If the plasmapheresis doesn't work that is where I will be treating symptoms. I have the same ones that you have, so what are you taking to treat them? Erik I'm so sorry that your in a bad spell again. Every now and then I get this awful feeling like I'm trapped in side my body and I can't get away, it passes, but it is a bit scary when I'm having a bad spell. I hope treating the symptoms is helping you, if you seem worse though since being on them, give the meds a second look. Inderal was suppose to help me and it made me so much worse, and the fatigue from it made me zombie like. That went away with in a month after going off it. When you get your next good spell and if you have the funds to pursue further testing I encourage you to do it. But, I know that feeling about having to drag yourself to yet another test or doctor. Sometimes you just need a vacation from it. I hope you feel better soon, you do add so much intelligent discussion to the board. Futurehope/b] Thanks for the info. I too found something similar when googling. So I guess it is a treatment choice. I was just hoping some others here on the board had some first hand experenice with it. You, the forum, and dinet have been such a useful resource. If it hadn't been for dinet I wouldn't have even known what tests to push for. So, I guess I'm surprised that more of us haven't taking testing further, when dinet has provided us with such great resources. It seems many of us just treat symptoms vs. the cause. Dsdmom, So there are two of you that responded to this post that have said the same thing about your autonomic specialists not treating this way. I ask you too, what type of doctors were they and why do you think they were resistant to this treatment choice? Pandy I see you did a separate post. I'll respond there. Thanks again all of you, of course if anyone, that hasn't responded yet has anything add, I'm all eyes, get it cause I can read what you have to say but I can't hear you!

Asking again! So to my question, my next option is the plasmapheresis. Has any one here had this done yet? I guess I wondering how many of you took testing further after your positive TTT? Has any one else had the skin biopsy? If you did have plasmapheresis what was your experience? My insurance said I don't need prior approval, so now it's seems like this is a real option for me, so I guess I'm a bit scared to do it now that I can. What do you all think? I guess I'm asking also unless you have EDS or some other diagnosed condition that is causing the pots, what other testing have you all done after your Tilt Table was positive, and/or are you just trying to treat symptoms vs the cause? Am I just a little bit further along in pursuing this then most of you and so there really isn't any advice or opinion? Most of the testing I've had done so far has been mentioned somewhere in the forum or in one of the other area's on dinet. It could be informative to have a dialogue on this, as maybe more of us might be able to pursue further testing if they haven't already. If it turns out I'm venturing where no one has yet, then I sure would let you all know how it goes for me. If it works it might be another option for some of the rest of you. I'm sure ram and eric would love this topic. Where did they go!!

Oh suzy good to hear how well you are doing! I was worried about you and hoping that things were still going well as you had stated on your last post a while back. Guessing that new doctor was finally able to help you out? Well pm if you want to catch up. God has been watching over all of us.

Hope you all can help me with this one. Here's where I'm at right now: After my positive TTT which showed syncope with standing hypertension and tachy, I was referred to a neurologist who then did a skin biopsy for small fiber neuropathy, plus a bunch of other tests to rule out many of the other causes noted on the dinet web site. The only test that came back abnormal was the skin biopsy pretty much confirming the small fiber diagnosis. I then went to see Dr. Grubb in toledo and he also agreed it was most likely autoimmune, even though they may not be able to identify an antibody yet. He also diagnosis hyperandregenic autonomic neuropathy and put me on labetalol an alpha/beta as I go up and down. He also requested a catecholomine test to see if they are jumping when I stand. I haven't done that one yet, but will. My neurologist first wanted to do IVIG. Insurance denied as experimental.

Yea!!! When I saw your picture with that rash on your face. I said to myself that looks like the classic lupus butterfly rash. I'm up on lupus/mixed connective tissue because that was the first thing they tried to diagnosis me with 20 years ago, I had a positive ANA at the time, for years. Most of the lupus panel was negative though. So I didn't quite fit. I have also had elevated CRP's. Really research the treatment plans, I'm sure they are better options now then, I had back then. Be careful of the steriods, prednisone, dexamethasone. They gave me that and planquenil. The steriods ended up giving me drug induced cushings syndrome. I blew up like a balloon, stopped menstruating. Whether those steriods caused my Polycystic ovarian syndrome/metabolic syndrome, High Insulin. I'll never no for sure, but at the very least it was like putting gasoline on a fire and caused me to become infertile. No Kids, biggest heart break of my life. Make sure that they test your insulin levels and other endocrine hormones before they put you on that stuff, because at least then you have a baseline and if you go up from there you know it's the med's. Hope my bad experience helps you get better treatment options. But, amen I'm glad you finally know. Knowing what's wrong is half the battle to getting well. At least they know how to treat this one, though I don't think it is curable yet. Good luck with it all.

Well we did about 6 IUI's and one IVF, all unsuccessful. However I had expected to feel worse on the hormones and I actually felt better. Of course I didn't know I had autonomic dysfunction at the time. I had no idea my BP/HR were swinging the way they did. Now that I know what is happening I suspect the blood pooling my have contributed to miscarrying my baby at 7 wks, this is what led to the fertility treatments. Had I known more what was wrong with me, perhaps the fertility treatment would have been successful. So make sure you that all your medical issues are looked at, treated, and how blood not flowing right may effect conceiving, before spending all that money. I wish you the best and hope you are successful.

Well that is what happened to me on my tilt table my BP/HR was going higher and higher then spiking and then suddenly dropping like a rock, then pass out. Just before it started to tank is when I got all my syncope like symptoms, nauseu, sweating, etc. So, now I know from the Tilt Table what is happening to me when I almost faint. It takes a lot to trigger one of these episodes and they come on really fast when they do. Of course, though I usually sit or slide to ground before pass out and once your down your body resets and I am able to get up in about 5 - 10 minutes. So now I know if I feel bad to get my feet up, then I can get back up and do more. It looks like my adrenaline probably shoots up too. I still have to have the test for that. Dr. Grubb called it hyperadregenic autonomic neuropathy because my skin biopsy showed I was loosing my small fibers. The neuropathy is most likely immune in nature.

Well that is what happened to me on my tilt table. BP/HR going higher and higher then spiking and then suddenly dropping like a rock, then pass out. Just before it started to tank is when I got all my syncope like symptoms, nauseu, sweating, etc. So, now I know from the Tilt Table what is happening to me when I almost faint. It takes a lot to trigger one of these episodes and they come on really fast when they do. It looks like my adrenaline probably shoots up too. I still have to have the test for that. Dr. Grubb called hyperadregenic autonomic neuropathy because my skin biopsy showed I was loosing my small fibers. The neuropathy is most likely immune in nature.

Your both right. She wants to see if the propranol is causing the hypotension, because it can lower BP as well as HR. What you really need is a TTT to see what happens with your HR/BP and/or if you have syncope (fainting) as well. If you can wean off the propran to do a Tilt Table, might not be a bad idea, especially if you haven't had one yet. Thing is with this condition you can have Pots, and/or hypotension, hypertension and syncope. Depending on the findings a lot of docs give propran. Because my BP goes up, the propran made that worse, so I am now on labetalol because I do both go up and down/syncope.