arizona girl

Your symptoms sound a lot like what happens to me right before I get near syncope. Have you checked to see what is going on with your BP and HR when this is happening? I mainly get orthostatic hypertension and high heart rate when I'm up right, but right before I drop I will get very ill, sweaty, ringing ears, nausea. Dr. Grubb has put me on labetalol, it's a alpha beta. It has made a huge difference in my erractic BP/HR. I was on clonidine and it was like my body kept wanting higher and higher doses and I felt awful on it. Proprananol gave me higher BP. Not knowing what is happening with your hr and BP and not knowing what tests you've had makes it hard to give you advice. I have been having gastro problems and will be getting part of my colon out. My digestion has been better too since cutting out most dairy. I'm going to get food allergy testing after the surgery. Have you been tested for food allergies or mast cell disorder yet

Well it depends on what your pots symptoms are and what other tests you've had done first. You should be given twilight sleep and then they do the procedure, you don't remember when you wake up what they did. My blood pressure drops so I needed to be put on IV. What other tests did you have and what are your pots symptoms?

Hi sarah, I live in chandler too! This was the first time I've seen you post. Welcome to forum. There are quite a few of us here in arizona.

Hi, I have low d too! Dr. Grubb told me also that the D3 was more effective then the D2 prescripton form. So I'm taking 2 D3, 2,000 gel caps daily. My primary had prescribed the d2, I decided to go with Dr. grubb's recommendations. My primary said okay and that we would recheck in 3 months to see how it goes. I would be really interested in knowing what the brand name of that prescription D3 is, I couldn't find any prescription D3 when I looked a few weeks ago. You know I have colon problems and will be having surgery too, I wonder if that has contributed to making my D just tank? Has any one felt better after getting their D up?

Wow talk about timely! I was given interavenous levaquin last year when my colon popped. When I went on the oral version after getting out of the hospital I started having terrible pain in my hands and feet, and still have a lump in my palm. A few weeks ago I had a relapse infection in the colon and they gave me cipro instead. After about 5 days my whole body was in severe pain and simple trying to pick up my purse, my shoulder felt like it was going to tear. I didn't finish taking the rest. Then I read the warnings on the info sheet and right there plain as day, it says not to be taken with anyone who has nerve problems or neuropathy, as it can cause irreversible neuropathy. I recently found out that I had small fiber neuropathy, so I should never have been on it. I'm going to have to be really careful for a while, cause it can cause tendon ruptures up to a year after treatment. So, I have a question? This week my gastro doc and I were trying to figure out which antibiotic I should take, we haven't heard back from Dr. Grubb yet, and I need to stay on the antibiotics until I have my colon surgery in a few weeks. We decided on augmentine. Any one with neuropathy causing their dysautonomia have any experience with it? I'm going to start it in the am. If anyone knows a good broad spectrum one that works on the bugs in the colon, that would be good to know too! Thanks

Oh that is good! Glad you read up on it. So, you did have a scan of your ovaries and you did have a fasting insulin test done and they were normal? The only reason I'm asking is because you can still have elevated insulin and not have developed the other symptoms yet. When I was first sick I actually drop to 96 pounds and am fair haired and skinned. The only early symptom I had was slightly long menstrual cycles. My symptoms became more obvious in my mid-thirties and also after I was put on dexamethsone to treat my first misdiagnosis, mixed connective tissue disease, my symptoms really got bad. Even then I still didn't look like the typical pcos patient. The only way to rule it out for sure is to have the two tests I mentioned above. If your insulin is high it would explain the elevated testosterone and facial hair. You could also google thin pcos or something like that and see if you fit in more with that pcos group. Hope the aldactone works for you, it is suppose to help with that problem!

April, with the facial hair and elevated testosterone, you most likely have Polycystic Ovarian Syndrome or PCOS. Do you also have elevated lipids, weight gain, irregular periods, diabetes, infertility or high blood pressure? If you do have these symptoms you need to see an endocriniologist that is up on PCOS. This condition is caused by elevated insulin or insulin resistance. A fasting insulin test, not glucose test. Also a side by side Glucose tolerance test and insulin tolerance test is important as well. The facial hair and elevated testi are symptoms of underlying disease and simply treating the facial hair will not treat the condition. If you don't have diabetes you can develop it as a result of your pancreas failing for pumping out so much insulin. I have PCOS without the facial hair, but with very elevated insulin. So I'm pretty up on it. Also you don't have to be overweight to have it. If you go to ob/gyn.com they have a full forum and information about PCOS, you could also just google it and read up on it to see if you fit the symptoms. I recently went on aldactone to get my orthostatic hypertension under control and got terrible GI symptoms from it. Hope this helps

Do you know if they checked her for narcolepsy? As I was reading your post and the way she just goes out, it made me think it sounded like narcolepsy! Just a thought! Also did they rule out lyme's? Yes go to mayo, Dr. Grubb is wonderful, but it sounds like she may need specialized testing which you are more likely to get at mayo. I would go to grubb after they figure it out and if treatment doesn't work, he is very good at figuring out how to treat. Also his wife has a brain tumor and at some point he might not be available to see patients. Her symptoms seem much more severe then just pots. I have a different form where my bp/hr only go up when I'm standing in talking, then once in a while I will have a drop attack, but that takes a trigger. Anyway a neurologist recently did a skin biopsy and it showed I have autoimmune autonomic neuropathy, that is most likely causing mine. I had a bunch of tests done, mayo specializes in testing for antibodies that can cause this, so make sure you get those tests. Dr. grubb put me on labetalol as it is an alpha/beta and after two weeks it seems to be helping, but he prescribed it specific to my symptoms. There are so many different conditions that can cause dysautonomia. As the doctor at UCLA told me, after my positive TTT, "You went Up, before you passed out?" Don't let them label you pots, you have not had a through work up, go to Mayo, you could even have a cancer causing this, or other hormones circulating in your body. So I kept pushing until I had most of the tests done to rule those things out. Also please go and read all the stuff available on this site. read mechanisms, causes, etc and all the forms of dysautonomia listed here. Also read the pinned post titled "Frequently Asked Questions-help Yourself To Answers, Links to many sources of information" There is ton of info there too. I read all those and wrote down all the tests to be done that fit my symptoms. It made all the difference, because when my neurologist did an emg on me and it came back normal, I knew enough to say "well what about small fiber neuropathy?" that got me a referral to a local neurologist that does that testing. That is how I finally got diagnosed. Keep the hope and keep going to you are satisfied with your results and treatment. It is wonderful that you care so much about your wife!

Thanks for asking! Myself I'm hoping things are moving in the right direction after going down a lot of rabbit holes. She said that things had been up and down and she hasn't had time to be online. She did have a good visit with a new doctor. She like I have been a bit traumatized by our health care providers, that makes it so much harder to try to find a new one. I had to let two more of my doctors go recently, but the result has been that I finally seem to have a good team of doctors. I meet with my new primary care doctor on monday, hope it goes well! Her nurse practitioner who saw me, when my other doctor failed to get me in and on antibiotics when I had another colon infection after my colon ruptured last year, was really good, so I'm hopeful. My cardiologist recommended her and has a good working relationship with her. Her practices also knows my neurologist and thinks highly of him. Of course I saw the wonderful Dr. Grubb and he got me on a bp med that seems to be working! So good things are finally happening! Oh and my cardiologist told me this week how much she loves the tv show Mystery diagnosis. She so gets me and what I've gone thru, how daunting getting a diagnosis has been, and how not looking sick really delayed me getting the care I needed. I am going to have to have surgery and after meeting my surgeon in the hospital last year and avoiding emergent surgery, I knew if had to have someone operate on me it would be him. He was the one who impressed on me that I really had to find out why my autonomic functions weren't working right, before we did an elective surgery. It took a almost a year and a lot of tests, and unfortunately I'm one of 18 women who's ep cardiologist was arrested for molesting his patients, he did my TTT. He was arrested on 46 counts of sexual abuse of his patients. So, after all that I do know I have dysautonomia caused by autoimmune autonomic neuropathy and a pretty sick colon. Knowing what's wrong though makes it now possible to get better. So I'm very hopeful by the new year I will be a healthier new girl! I'll need everyone's prayers that my surgery and IVIG treatments are successful. Hope you are doing well. It was so kind of you to notice suzy was MIA and to ask how I was doing, thank you so much! If you pm suzy she will get back to you, I'm sure it would make her feel good to know people are watching out for her!

I checked in her a few weeks ago. She did post back. Her user name is all4family

Do you have more information about what, specifically, the 5 antibodies are? Other than AChR? Or could you find out for us? Thanks! I can ask his nurse the next time I talk with them. I'm pretty sure though it is Mayo who has found them. I know there is a link to that test on this site. I didn't get the impression that he even needed to test me for them. I think my skin biopsy showing the neuropathy was enough to make the conclusion. Also his point was that there are probably many antibodies causing problems that science just hasn't identified yet. So if you have symptoms, you have symptoms and just because that haven't been able to find the trigger doesn't mean you are not sick, just that they don't know why yet! Maybe some one might want to talk to Mayo for us! I'm not up to doing that right now, because I'm getting ready to have a colon surgery.

I had two hida scan's both with cck. The first one I had sharp burning pain and thought I would loose my cookies, but my ejection fraction was normal. So it was iffy. The second a year latter felt nothing. So was glad I put off the surgery. I do from time to time get what I call a hot stool that burns and causing pain and inflamation is it moves through. I recently read that the autonomic neuropathy that I was just diagnosed with can cause spillover problems with the gall bladder and motility issues. So maybe that was what was causing my symptoms. Though I always taste in my mouth like I just drank vinegar. Hope this helps, if the cck does cause nausea it will pass without loosing your cookies. The test does seem like it takes forever, as you watch that isotope move thru.

Actually you guys autoimmunity is also treated by neurologists. I was treated for many years by a rheumy because of my positive ANA. Recently revisited one had new labs done, showed nothing. Sent me to cardio where positive TTT was done, told my neurologist he had me come in for an emg, that was norma, then I was sent to a local neuro who specializes in small fiber testing, that biopsy came back positive. The neurologist tested me for a whole bunch of auto antibodies and Dr. Grubb also looks at autoantibodies being study at Mayo, he said they have now found 5. I will be getting if approved the IVIG infusions from the neurologist. I don't even know for sure if rheumy's are using this form of treatment yet to treat rheumy disorders. Neurologists, however are on the front lines of this treatment. If you are curious you can go to Phoenix Neurological Associates web page, there is a wealth of info on autoimmune neuro disorders and treatments.

Hey ram, actually he didn't say what caused what. I have had a very high ANA in the past, that was one of my first findings when they thought I had mixed connective tissue disease 20 years ago. I tend to think that the small fiber neuropathy may be a result of the apnea causing high insulin and the high insulin causing the neuropathy. There are many studies showing the connection between the apnea and insulin and we all know that diabeties on it's own causes neuropathy. The studies are finding it may be the higher insulin not the higher glucose that's the primary cause. In my case my othostatic hypertension/tachy have progressively gotten worse over the years. My episodes where I suddenly tank and bring on presyncope (only pass out was on tilt table) takes an added trigger, and I'm mostly am good at avoiding them, something I wasn't able to do on that puddle jumper plane this week. He said they are continuing to find new auto antibodies involved in the dysautonomia's, first there was only one now they've identified 5. So, I think he is saying that an auto immune response, even if we don't know which antibody it is yet is the most likely cause of mine. I also have endometriosis, pcos and an sick colon that is going to require surgery, all of these condition can have an autoimmune cause. The neuro think's it is auto immune as well and wants to start IVIG if insurance approves it. If it does improve things then I will know for sure it is autoimmune, if it doesn't the other option is to try and treat the symptoms. At this point I think his treatment is being directed at treating the symptoms, trying one thing at a time. You know I went to Vandy and they failed to do the Tilt Table Test that would have diagnosed me two years ago, based on my symptoms though they did have me do the salt loading and the inderal, my hypertension actually got worse with these therapies. When I finally had a TTT done, I called the first doc I saw at UCLA, when she found out I was going higher not dropping, she basically scared the you no what out of me and told me I had not been throughly worked up, that many things cause it including cancer. Thankfully my new neuro was able to run most of those tests and rule them out. So, yes I think that I do have an hyperadregenic state, he didn't say that, but pretty much that is what is left and autoimmunity is probably what is causing it for me, not for anybody else on the boards. I think by now we all know there are many causes that can be for different reasons, that bring on similar symptoms. Treatment should be based on trying to determine the primary cause and treating that condition. You do know methyldopa is an older hypertensive that lost favor due to significant side effects. But I thank you for your insight, your comments do create thought and discussion, which shows more often then not how different we all are. We are all square pegs trying to be fit into the hole. Some day maybe there will be a square hole our peg will fit in.

Dr. Grubb is a very good doctor and a wonderful person. But, as we all know our doctors are people too with lives and burdens of there own. He recently survived renal cancer and his wife has the same kind of brain tumor that Ted Kennedy just died from. In spite of these great burden's he is still caring for patients. It is clear he adores his wife and he told me the news of Kennedy's recent death really set them back on the hope front. So please keep them in your prayers. Maybe with enough prayers we can help get them get their miracle cure! At the very least they need prayers that they provide for themselves first and us much as we all might need his expertise to help us, that maybe he and his wife's needs are more important right now. He certainly deserves our care and support! So if you believe lets start praying for a miracle!!!

probably due to auto antibodies that are causing small fiber neuropathy and/or the high insulin and sleep apnea. I also have very low Vitamin D, high cholesterol, mild hypermobility joint along with the recent colon infection, and pcos metabolic syndrome. He told me that he sees it manifest in several different ways. People who's bp/hr mostly go up, people who mainly drop and people that do both. So that's me people who go up and down. When I'm sitting and standing I mostly have orthostatic hypertension and tachy. He said the IVIG the neuro wants to do can be effective, but should be used carefully, do to the wide number of donors needed to make it. In the meantime he wants to try and treat the symptoms with an alpha/beta med labetalol or bystolic. The labetalol cost less so he wants me to go on half dosage for a week to see how I tolerate it. Anyone else use labetalo or bystolic with orthostatic hypertension? He recommended D3 and didn't feel that the prescription D2 was effective. My D is continuing to drop and went to 12 from 19 in a month. He also gave me a prescription fish oil for the cholesterol. It was worth the long trip from arizona to see him, the plane ride was ruff the motion triggered one of the presyncope sicker than a dog episodes. Almost, but thankfully didn't loose my cookies.

Oh suzy, I'm so glad you found a doctor that can hear and see you for the truth you really are. I so understand the frustration and the fear. I had to fire both my primary care and gastro doc in the last few weeks because of their failure to provide me care even when my white blood count was elevated and and I had a history of colon rupture. I don't know why I kept hoping they would take me seriously. Ironically the week before the reinfection my cardiologist had suggest I switch primary care docs to one she works well with. So when I was refused care and told to go to urgent care. I called the doc she had given me, they saw me within an hour and got me on antibiotics right away. They also gave me a name of a new gastro doc. I can't believe the difference in the quality of care and throughness and the fantastic follow-up on my lab results. God has finally led me to a good team of doctors. I know he is leading you there too! Sorry you've been feeling so poorly. Have your new doc take a look at my neuro's website at Phoenix Neurological associates. They provide a lot of info on our conditions and they offer treatment. I saw Dr. Grubb on Monday and he confirmed the neuro's diagnosis of auto immune autonomic neuropathy and said that the IVIG treatment can be helpful, so if my insurance approves. I will probably try it. This same help is within your reach. You deserve to get better too!

Wonderful news!!

Follow-up if you can please !!!!

Really! So if that is happening how do they treat it? I've had a terrible time with BB, they lower my heart rate, but then the hypertension gets worse.

I hear ya, I just had an follow-up appt w/my gastro doc, to try an pin him down on why my colon popped last year, was it the car accident or something else. I want to know so, I can decide if I should have someone go in and take a look. So far everyone is trying to say it was diverticulosis, except I had no abcess. Anyway instead of answering my question he goes "Well you look really good". This was after I had just told about the autonomic neuropathy. I looked at him and said "You, know, so that's my silver lining I look good, but that doesn't mean I feel well. Frankly, those of us who have invisible illnesses don't find comfort in hearing that." I might also add that hearing that from a male doctor, after I was just molested by another male doctor, made me very uncomfortable. I tried to get him back on track and then instead of answering a legitimate medical question, he goes: "Well why do you want to live in the past, it's over." I'm like "What it's not over I'm still having problems." Of course I started crying in frustration. Not surprising as I had to sit up in a chair for an hour and half, before he came in. You know what being vertical like that does to us. He never did answer me. AHHHHHHHH!!!

Rama, why do you suggest the droxydopa? When I googled it I mainly found that it treats Orth Hypo not Ortho Hypertension, which I have. I have syncope as well, but I'm elevated right up to less then a minute before I drop. The drop usually takes an added stressor like, heat, humidity, motion, medical procedure (med procedure drop me when I'm supine) Also I found very little when I googled hyperadrenergic, neuropathy and hypertension. I'm having a hard time understanding why I'm hypertensive with my symptoms and lab results most people would be hypotensive, but I seem to overshoot. I do know that the sleep apnea or lack of oxygen in my case can lead to the insulin resistance which then causes hypertension, but I'm only hypertensive when standing, and or talking. As soon as I lay down and am quiet BP/HR drop, and during sleep at times I'm brady and hypotensive. Symptoms was I'm pretty sure everyone of my autonomic functions are compromised in some way. I have a high startle response, I get hypertensive, high HR and a fever just from animated talking. I would love to just fit into one category, but I don't seem to.

hey pots girl PAF is Pure Autonomic failure. If you go to the main page of dinet's website it is listed there as one of the forms of dysautonomia. I can't imagine how tough it is to have such low blood pressure. I only get that way before I drop and I get awful sick while it's happening. I think maybe the orthostatic hypertension, you can still force yourself to be somewhat functional. Hope you can find something that works. Since your in arizona have you thought about trying to see Dr. Levine at Phoenix Neurology? If you haven't had a skin biopsy or ruled out all those other tests, maybe you should consider seeing him.

After I've been on my feet a lot, or taken a bath my body pulses like that too! It calms down after I've laid down for a while.

He actually called it autonomic neuropathy. Polyneuropathies are approved for treatment. I think he is a research center for small fiber neuropathy, I believe he said in my first appointment that they do use IVIG to treat it. I hope it's covered because if my insurance dosen't pay for it, I won't be able to afford it.