arizona girl

I got really lucky on the testing. I knew all these tests needed to be done after reading up on this website, but not where to go to get them. I questioned my 1st neuro about the small fiber testing when the large fiber emg was normal. If I hadn't been so well informed by this web site, he would have sent me on my way. So the request for the small fiber testing, not the dysautonomia was the only reason I got referred to phoenix neuro. How refreshing to me that Dr. Levine knew about dysautonomia and new that we had to test for a bunch of stuff to figure it out. My cardio vascular workup really could only look at this from their end. Cardio testing included the positive TTT, which really changed everything for me in getting heard anywhere else. This has been the most struggle free quickly executed doctor's encounter I have ever had. The tests the neuro ordered where: Neuronal Nuclear w/reflex, Angiotensin converting enzyme, immunofixation, immunoglobulins quantitative, sed rate, sjogren's antibodies, amphiphysin antibody test, ganglionic AChR Antibody test, VGKC. The skin biopsy and sleep study. I don't have a copy of any of the labs yet, waiting on them. He only addressed the biopsy and sleep study findings and said you have neuropathy, but we don't know why. Not knowing why didn't seem to matter to him, the positive biopsy, was all he seemed to need to know, to decide treatment. If you google these different tests you can see what they are for. Also if you go to Phoenix Neurological Associates web site, it talks about the many different disorders that IVIG can be used to treat. He also ordered new testing for methylmalonic acid and homosysteine, to see if I have an underlying B-12 problem. My sister has this. So, I think the two immuno tests above did check my IG's, I just don't know what they are yet. The only time I get red, flushing is in association with heat or pressure, like crossing your legs, red marks left. I have been trying for 20 years to get someone to figure out what's wrong. It almost feels unnatural that since april, all of this has wrapped, so quickly. I'm like no really, really we finally know whats wrong. Not sure all the why's have been answered, but does that really matter, when there is enough now known to go ahead and treat. I have been waiting for the treatment phase for evvvveeeerrrrr!!! I want to see what Dr. Grubb take is first. As far as the IVIG, I googled it, and you will see it is now an approved treatment for a lot of different conditions. One thing to note is that there are several different IVIG products on the market, made with different support ingredients. So you want the one most likely to not interfer with your particular condition. Like me with hyperinsulin, wouldn't want a product that has glucose as a base. I did also read that if IGA is low that is harder to treat and you can have an allergic reaction from the product. GEEZ 500 is already below the range what are they waiting for!!!

Yes daisy, I joke around about finding a job where you can lay down and not talk. I will take it if someone can find me a job like that. Yes, I love social events, but body just wigs out in those situations, not that I let that stop me. At my last cardio doc appointment they did an ecg, and I had told the nurse that my HR jumps when I talk. A minute later while it is running, she goes you are right your heart rate does jump. So it does it even when I'm lying down and talking. Thankful, I'm thankful that I don't get that flushing. Your symptoms are a bit different then mine. My BP and HR usually drop when I'm supine. Though during my sleep study HR spiked down to the 40's and up to the 120's, but wasn't continuous. I have yet to have blood norepinhrines and such tested. The neuro I'm seeing actually specializes in the small fiber biopsy and the testing of it they don't send it out. I think because mine is more autonomic then just the small fiber, he is saying do the IVIG, first. To see if we can stop the progression. My cardio is in agreement. She said to ask Dr. Grubb, what can first the sleep apnea, hyperinsulinemia, or the neuropathy. I was on those tricyclic's when they thought I had fibro 20 years ago, they didn't seem to change anything. While researching I found that the IVIG treatment is okay to take when your pregnant and may help with multiple pregnancy loss syndromes. You might want to consider it. I'm in Arizona and Phoenix Neurology is one of about 8 infusion centers in the USA. Best of luck on getting pregnant. I really wanted a little girl. At 52 I think that ship has sailed, though until menopause starts, I think you always hope.

Hey Ram and Thankful, I had a some questions about your replies to me, would you guys take a minute and review, this post and replies? thanks so much? ... will think about all of this. I'd love to see what you all think about my findings and thoughts, as I prepare to go see Dr. Grubb at the end of the month. I really want to make the most of that visit, and not leave anything out. So, I met with Dr. Levine last wednesday, he showed me the pictures of my nerves and said I had less then I should have, he also told me that my sleep is being disrupted about 13 times an hour, I'm getting no stage 3 sleep, mostly I'm having significant drops in oxygen during rem. I was PMS and did have a bad nite during the study. Thankfully I do get some good nites. Oh if you have sleep apnea you are not to take any central nervous system depressants. So, what do you do when you have pain keeping you awake? He said that there is a 30% chance of improving this with IVIG infusions, not great but better then nothing, he also wants me to go back to sleep center to do cpap. So, I'm waiting to see if insurance will pay for all of this. They have paid for most of the testing. Hope they pay for treatment. It is a relief to know that all of those scary tests for cancer and stuff came back normal. I'd say that the neuropathy has caused a lot of disruption with my autonomic symptoms. I get elevated BP/HR and a low grade fever just from talking or being on my feet. Interesting I'm not hypotensive on standing, I get orthostatic hypertension. Only get hypotensive less then a minute before a presyncope episode occurs, then I get so sick and loose control of my legs, next thing I'm kissing the ground and can't get up. These episodes usually take an added stressor to trigger them, which I've gotten very good at avoiding. I already have mild left ventricular heart dysfunction. So this really appears to be effecting my cardio vascular autonomics. None of the beta's or BP meds have helped. They either make the hypertension worse of drop my HR and BP to low when I sleep. These episodes have been happening to me since I was a kid. Interestingly when I googled the sleep stuff, I found that my hyperinsulinemia/pcos/metabolic syndrome or diabetes (don't have) are strongly associated with sleep apnea and daytime hypertension. My take on the studies is that the sleep apnea may lead to these problems. I do know that though my blood sugar is normal, mine is higher at nite then during the day, it should be reversed. So maybe the neuropathy is making it hard for me breath during sleep, or maybe the high insulin is causing the neuropathy, though most diabetic neuropathy is caused by high sugar, which I don't have yet. So which came first sleep apnea, high insulin or neuropathy? I also read that the apnea can cause nite sweats, which I have been having on/off for 20 years. The sweats get worse during the second half of my cycle. Well all my symptoms get worse during the second half. I also have digestive issues, but the free perforation of my colon last year doesn't really fit with the typical gastro problems. So, I think that may have been a result of the abdominal trauma I got during a bad car accident. Don't know if the trauma could have bought on the neuropathy. I did have lots of trigger points and muscle spasms from the accident which I've spent that last few months treating w/myofacial release at my chiropractors. About 80% of that type of pain is gone, I do still have the typical burning pain in the arms and legs that neuropathy causes. The only other thing that I think may be underlying this is that I have a small adrenal nodule, 1 abnormal ACTH stim test, f/ups were normal, and positive titers for the cytomegalo and HV66 viruses, had mono, have positive PPD for TB, no active disease, endometriosis, and I was exposed to fogging chemicals for inch worms in the 1960's when they would fog the neighborhoods in long island. Also things like EDS and MS have been ruled out. So that's my body in a nutshell. Please feel free to pick this apart. Thanks everybody! B)H

... will think about all of this. I'd love to see what you all think about my findings and thoughts, as I prepare to go see Dr. Grubb at the end of the month. I really want to make the most of that visit, and not leave anything out. So, I met with Dr. Levine last wednesday, he showed me the pictures of my nerves and said I had less then I should have, he also told me that my sleep is being disrupted about 13 times an hour, I'm getting no stage 3 sleep, mostly I'm having significant drops in oxygen during rem. I was PMS and did have a bad nite during the study. Thankfully I do get some good nites. Oh if you have sleep apnea you are not to take any central nervous system depressants. So, what do you do when you have pain keeping you awake? He said that there is a 30% chance of improving this with IVIG infusions, not great but better then nothing, he also wants me to go back to sleep center to do cpap. So, I'm waiting to see if insurance will pay for all of this. They have paid for most of the testing. Hope they pay for treatment. It is a relief to know that all of those scary tests for cancer and stuff came back normal. I'd say that the neuropathy has caused a lot of disruption with my autonomic symptoms. I get elevated BP/HR and a low grade fever just from talking or being on my feet. Interesting I'm not hypotensive on standing, I get orthostatic hypertension. Only get hypotensive less then a minute before a presyncope episode occurs, then I get so sick and loose control of my legs, next thing I'm kissing the ground and can't get up. These episodes usually take an added stressor to trigger them, which I've gotten very good at avoiding. I already have mild left ventricular heart dysfunction. So this really appears to be effecting my cardio vascular autonomics. None of the beta's or BP meds have helped. They either make the hypertension worse of drop my HR and BP to low when I sleep. These episodes have been happening to me since I was a kid. Interestingly when I googled the sleep stuff, I found that my hyperinsulinemia/pcos/metabolic syndrome or diabetes (don't have) are strongly associated with sleep apnea and daytime hypertension. My take on the studies is that the sleep apnea may lead to these problems. I do know that though my blood sugar is normal, mine is higher at nite then during the day, it should be reversed. So maybe the neuropathy is making it hard for me breath during sleep, or maybe the high insulin is causing the neuropathy, though most diabetic neuropathy is caused by high sugar, which I don't have yet. So which came first sleep apnea, high insulin or neuropathy? I also read that the apnea can cause nite sweats, which I have been having on/off for 20 years. The sweats get worse during the second half of my cycle. Well all my symptoms get worse during the second half. I also have digestive issues, but the free perforation of my colon last year doesn't really fit with the typical gastro problems. So, I think that may have been a result of the abdominal trauma I got during a bad car accident. Don't know if the trauma could have bought on the neuropathy. I did have lots of trigger points and muscle spasms from the accident which I've spent that last few months treating w/myofacial release at my chiropractors. About 80% of that type of pain is gone, I do still have the typical burning pain in the arms and legs that neuropathy causes. The only other thing that I think may be underlying this is that I have a small adrenal nodule, 1 abnormal ACTH stim test, f/ups were normal, and positive titers for the cytomegalo and HV66 viruses, had mono, have positive PPD for TB, no active disease, endometriosis, and I was exposed to fogging chemicals for inch worms in the 1960's when they would fog the neighborhoods in long island. Also things like EDS and MS have been ruled out. So that's my body in a nutshell. Please feel free to pick this apart. Thanks everybody!

Low progesterone levels usually mean you are not ovulating. Of course this also depends on what day of your cycle they tested you on. If was after ovulation and it was low means you didn't ovulate. Are you trying to have children or do you already have them? I'm guessing you have endometriosis because you had the ablation. I have endo too! I also have PCOS-polycystic ovaries. I was unable to have children. I know one reason you can have low progesterone is PCOS, which is caused by elevated insulin in the blood, another name is insulin resistance. Your blood glucose is usually still normal as your body is producing more insulin to overcome the bodies resistance to it. Have you had your ovaries scanned yet or had your fasting insulin tested yet? If you google PCOs you will find websites that tell you what are tests you should have done for this condition. Of course if your cortisol levels aren't right, you may have adrenal disease or a conditions like cushings syndrome, addisons or congenital adrenal hyperplasia. These conditions are usually beyond a PCP's skill base and you should see an endocrinologist. Find the best one you can and ask before making the appointment if the doctor knows about pcos, high insulin, and/or adrenal diseases. Not all endo's are up on the insulin stuff. Once one hormone is off it can through off the rest. hope this helps!

I don't have the final results yet. I had trouble falling and staying asleep early on. Finally took pain med and feel asleep. I was sleeping good when they woke me up. I had a headache when I woke and all the rest of the day. As I fell asleep too late they didn't have time to try the cpap on me. I'm not a snorer. I do find myself holding my breath during the day. It feels like a lot of effort to get a deep breath. I think I'm a shallow breather. I guess if you do stop breathing or your oxgen drops, they have to tell you. He said it was happening during my REM stage. I'm kinda of wondering if this is being caused by the dysautonmia or is it causing the dysautonmia. I do have orthostatic hypertension, tachy, mild left ventricular dysfunction and I do have high insulin/PCOS. Anyone else have a problem during REM?

Have you had an echo done yet by the cardio? That will tell you if you have congestive heart failure and what stage you are at. Pulmonary symptoms can be associated with heart problems.

Hi all, I know a lot of us have been frustrated trying to find doctor's in arizona who even understand what dysautonomia is. I was told be my first neurologist that there wasn't anybody here. After my positive TTT, he had me come in for an emg (large fiber), when that was normal and I asked about other testing, he didn't think there was anything, and then I said what about small fiber neuropathy. He then said my conditions was beyond his specialty, and he didn't do those, but would refer me to someone who does. So I ended up in Dr. Levine's office, after he had received my referral and request for the test from the other doc. Even the front desk new what dysautonomia was. I must say it was one of the most refreshing appointments I have had in this endless search for someone to help me figure out what is wrong. He already new what he wanted to test me for before I even asked a question. When I said the TTT showed I had it, but that I didn't know why. He said, yes I know the causes of it are endless, some of them we can treat, some we can't. There are 2 approaches we can take, we can test for everything, because some people really want to know why, or we can focus on the tests for the conditions we know we can treat, and see if it is one of them. He then ordered the small fiber biopsy, sleep study, and all those scary tests that look for small cell carcinoma, panoplastic syndromes, immunofixation, immunoglobulins, amlyoidosis, and sjogrens. I've had all the blood tests and biopsy done and will have sleep study this wednesday. Of course, I'm not holding my breath that one of these will turn out to be the source, but it will give me peace of mind to know that the scariest causes have been addressed. Hopefully I will know the results next week. Also the best news is that I will be seeing Dr. Grubb at the end of august. Dr. Levine has said he will be happy to consult with Dr. Grubb on the best treatment plan for me. So, finally I'm in the hands of two specialists, one a cardio, the other a neuro, who really have the ability to get a fix in on this. After, all I've been thru of late, I guess god so fit to give me a really big cookie! Anyway I encourage any of you who have access to doctor's in the phoenix area to consider Dr. Levine or his partner Dr. Saperstein. Oh did I mention they do all their own small fiber testing at their center, because they are involved in research. They have a pretty informative website as well. I do know they take United Healthcare.

Hi I have high insulin too! I also thought insulinoma, but I didn't get hypoglycemic. I do have an adrenal nodule. They also did a proinsulin test that came back normal. My fasting blood insulin is always high, when they did a 2 hour glucose tolerance test with side by side draws of insulin, my glucose was normal but my insulin grossly abnormal my high was 160. That is less then yours, but still is about 16x higher then it should be. Also I'm not sure what test you had done and what the scale for it was. If you haven't had the tests I've mentioned done yet you should. Also your testosterone can be elevated and LH/FSH ratio can be off, they are usually about equal, if one is much higher then the other one, even if they are in the normal range something is off. There is another condition that causes high insulin with out insulinoma, that is Metabolic Syndrome. In women it can manifest as Polycystic Ovarian Syndrome. Have you had your ovaries scanned for cysts yet? This syndrome can also cause infertility, obesity, High cholesterol, heart disease, hair growth were it shouldn't be on a women, skin tags, to name a few of the symptoms. It can be treated with an oral diabetes drug, called glucophage. Untreated it can become diabetes, when your pancrease can no longer produce enough insulin to take the glucose into the cell. Exercise and a low glycemic diet also are part of the treatment protocol. Hope this is helpful! Let me know if I can help out further.

Yes, heat intolerance is a symptom. I've had symptoms since I was younger then she is. I was 51 before someone finally did a TTT and confirmed. That positive test has now opened all kinds of doors for treatment that I couldn't get before. Maybe if I had been diagnosed and treated when I was younger I might have grown out of it. They do believe many diagnosed when they are younger do grow out of it, with treatment. Maybe she will be one of them. TTT sooner rather then later. Guilt about passing it on to her, is wasted energy! If it's genetic you got it from your parents, do you blame them? Nothing we can do about what is passed down through are DNA, so refocus that energy and your own experience to nipping it in the bud. If I had a daughter that is what I would do. So don't feel bad, accept, it is what it is! Hope you both feel better soon.

Hi flop, I've had ortho hypertension/tachy from the get go. I always feel fatigued and jittery when I'm vertical. When my heart rate gets high enough to cause presyncope, then I get very dramatic symptoms of lightheaded, nauseau, ringing ears, etc. etc., before I go down. I'm pretty sure it was the spiking heart rate that drops me and makes me feel ill. Also the beta's have taken all have raised my BP and caused weight gain, while it lowered my HR. I don't know much about ivabradine or the anti depressant, but they may raise BP. You know the old story this pill fixes this then you need to take something else to fix the side effects. That recent poll, seems to be showing a lot of us have the hypertension. I'd run it by your docs though since it is a change for you. Hope this helps!

Hi, my echo just found left vertricular diastolic dysfunction (relaxation phase). Which means the heart isn't filling all the way after a contraction. My ejection fraction that is measured along with this is still normal. So you need to find out what your ejection fraction is before you worry and what phase. Stage 1 if your ejection fraction isn't normal is the first phase of congestive heart failure. Many people have this and it never progresses beyond and is very treatable at this stage. It will need to be followed though to make sure you don't get worse.

I have metabolic syndrome/pcos with a normal 2 hr glucose tolerance test and a very abnormal Insulin tolerance test. I've done a lot of research on these things. How old is your daughter? What is her weight like? pth is the parathyroid gland. It will be interesting to see the insulin results. They should have done a insulin draw along side each glucose draw. Glucose and insulin work together. Think of it as glucose is the passenger and insulin is the car that take the sugar into the cell. Thus when the cells become insulin resistant the glucose can build up in the blood. The pancreas then pumps out more and more insulin to compensate. When the pancreas can't do this anymore and fails you become diabetic. Since she is having trouble with food, she should try eating a low glycemic index diet. These are foods that don't turn to sugar as fast in the body. Stay away from the simple carbs. I even have some trouble with the complex carbs, especially if they are the first thing I eat in the morning. I try to start with some kind of protein. I try to have a cup of warm herbal tea (lemon ginger is good) it settles the stomach too, or warm broth in the morning, if the tummy is acting up. If you haven't already make sure you get your own copy of the lab and doctors notes. Also you can google anything I've mentioned here and more info will pop up that you can see if it fits your daughter.

Oh alicia, I understand! It's so hard to be dependent on others. I'm sure they want to be there for us, but they tire of the burden as well. May I say a prayer for you, to get you through? Please god send alicia someone who has an open and caring heart and ear! Please help her to find a way to not be totally spiritually and emotional isolated in her home! Perhaps someone from her church! Please give her the energy to at least go be with her church community for services! Amen! My best to you!!!

Yes rama, after 4 beta's I realized they lowered heart rate but made my hypertension worse. Also relaxer's like flexeril and tizindine gave me rebound hypertension the next day. My BP is really high again today without anything yet. I know real low dose inderal does bring my heart rate down. I'm wondering if the headaches are being caused by the orthostatic hypertension. Until I get more tests done I'm at a loss on how to treat the hypertension. Of course lying down always works.

I've been getting headaches in the same location as well. Usually too, the vein/artery that runs near the temple is completely indented. I've found that taking a sudafed calms it down. Aspirin, advil nor darvocet get rid of it. I've wondered about the sudafed and it's effects on the adrenaline. I'm still waiting to get more testing to find out what variant I have. The salt loading didn't help me much and the beta's were making the hypertension worse. I'm taking 5 mg inderal only to keep the heart rate down.

Oh momdi, I feel your pain! I went to mayo first thru endocrinology, ran all the same tests and wasted my money. When I called them back to tell them I had dysautonomia, they wouldn't even let me make an appointment. "We have no doctors on staff here you have to go to rochester." That was before goodman came, so I completely missed out on him. I am having the same frustration finding any doctors in arizona. When my cardio had me see an ep cardio at their practice and he said he knew about dysautonomia and seemed real smart. I was so desperate for someone to finally help me, I didn't listen to my own internal warning bells that something wasn't right. So, let him examine me only to get felt me up amongst other things during my exam. I knew something was way off before the physical, and that I should leave, but I thought what if he can help me, so I let him examine me. Yes, he is that Dr. Lewis that was just arrested for feeling up his patient during a pace maker procedure. The victims that have come forward now are in the double digits. So that's set me back, to say the least. I am going to go get a "small fiber neuropathy" test done by a Dr. Saperstein at Phoenix Neurology. When I talked with their appt. person and told her that I'd had a positive tilt table diagnosing dysautonomia, she knew what I was talking about and said yes a small fiber test should be done and told me that Saperstein was the one doing those tests. They may be an option for you. I won't be able to tell you more about them and if they treat pots until I go. You could call them and see if they prescribe what your son is taking. What part of arizona are you in? I'd be curious what type of testing was done to diagnosis your son. The only thing I've had done are the TTT without blood work, and ruled out EDS Vascular. I saw a Dr. Grebe for that test and she deals with a lot of pediatric work, but looks at adults too! Hope this is helpful! BUT WE SURE DO NEED AN AUTONOMIC LAB AND SPECIALISTS IN ARIZONA!!!!

Well yea, wow that helps a lot! I looked at the directions. I live in chandler/phoenix metro area where it can take 30-45min just to get around town, so 2 hour drive not a big deal for me, 4 hours harder to do. Good point not to see a cardio at both. Will leave the cardio to Grubb. My doc here is also a NP and she said to get in with the NP/Bev first. Your saying the same thing as well, so that answer that question. I'll make the appointment with Bev. So now what to do at CC. I saw a Dr. Yan Go a neuro at UCLA, called her after the + TTT and she said I needed to see a Neuro/endocrine doc. Would Dr. Shields fit into that category? What did you think of Dr. Shields (he/or/She?)? I actually feel my high insulin and/or my adrenal nodule is a factor in all this, which crosses endocrine/cardio/gyn specialties. Sadly, at 52 I think the shipped has sailed for me having a child. I do however also have endometriosis and my colon ruptured in august for no apparent reason, perhaps a car accident 9 mos prior contributed or maybe endo on the bowel. I'm still running low grade fevers as well. Then there is the viral load I've been exposed to + ppd for tb, neg for active disease, cytomeglo and HV66 viruses, and mono. My cardio here said she wonders if these viruses are factor. Since you've been to CC what is the best way to make your initial approach to them? My doc said she would write what ever letter I need. So have your visits to these centers helped you with diagnosis and treatment? Oh, I so can't wait to get to the treatment phase. It seems a lot of the treatments are directed more to the patients who have hypotension. Thanks so much!

Those of you who have been to cleveland clinic or Dr. Grubb, since I have to fly to ohio do you think I should try to go to both centers? They both are on my insurance. Also, since Dr. Grubb doesn't do any testing on the first visit only consult, and I will probably have to fly back if he wants any tests done, do you think it would be okay to see his NP Bev for the first appointment, since you can get in sooner with her, or wait the 6-8 months to see Dr. Grubb? If I went to cleveland clinic as well, do they do the same kind of testing or come at it from a different point of view then Dr. Grubb? Are there any doctors there that you would recommend? I really need to see someone that recognizes my form of dysautonomia. I don't know other then the syncope what category that is yet. But my symptoms are as follows, if that can help you all give me a more educated recommendation. I had a Positive TTT causing syncope after extended orthostatic hypertension and tachycardia, the syncope occurred after a sudden spike in heart rate, then an equally rapid drop in bp with hr following. They didn't test any of the hormones, so I haven't had that done yet. The only things I've ruled out are EDS vascular and large fiber neuropathy. The first line tests I had done at Vandy primarily showed hypertension, which is why I think they didn't do the TTT there, sure wished they had. I also sometimes get supine hypotension/brachy during sleep and nite sweats when it happens. Don't get refreshing sleep. Haven't had sleep study done yet. Also I have PCOS/metabolic syndrome/High insulin-insulin resistance (take your pick, all the same thing just different names. I also have nonactive thyroid nodules and a left adrenal nodule that one acth stim test I had no response, the other two after were normal response. So maybe some underlying adrenal issues. I have perinual cyst in my sacral canal. I also have positive titers for mono, HV66 and cytomegalo viruses. Thanks guys hope that's enough to help you help me. I really need to get focused back on getting better and not the nightmare I've been going thru, which completely flared up my symptoms and set me back time wise on getting all this figured out. I appreciate your help and all your kind words this last week. Thanks so much. (half smile) Hope I have a big one on my face again real soon.

Oh Jana, what a tough situation, I'm sorry this is happening to the two of you. I tend to like to offer practical options and I was thinking what will help you get your daily needs met. Under the circumstances you are in you all should qualify for some temporary assistances to get you thru. You've already qualified for disability, right. Maybe you could contact your resource from there and see what asistance might be available. Also, the women's group at my church, always does meals for members of our church that find themselves as you. Do you have a spiritual community, that might help you? There is also meals on wheels and driving resources for people who can't drive. Even though he's not at the hospice level and hopefully will recover fully, hospice might be a resource for you to find services. Will keep you both in my prayers. Remember many men fully recover from this, but it still will be stressful in the short term, and you will have to be okay with asking for help. You'd be surprised how people will be so happy to help if you just ask. take care!

Toporol is a beta, right? She also gets the hypertension on standing, right? If so, that is what happens to me, as well. The beta's make my hypertension worse and the higher dose of inderal made me really sick, I had the worst constant headache from it. So, I'd really be careful if that's a beta. The hypertensions worse since she started the toporol, right? There is your answer, if that is true. Until we figure out what to try next, I do have low dose inderal short acting, to take when the heart rate is really bad and I know I'm going to have to be on my feet. As little as 5 mg will knock my hr down. I don't like taking it if I'm feeling bad and I'm going to be in bed most of the day, because as your wife probably knows, we feel better when we are laying down, because hr and bp come down to everyone's else's normal or lower. Also I have metabolic syndrome i.e. insulin resistance and the beta's also make that worse. I gained 12 pounds in 6 weeks from the higher doses of inderal. Got off that and my weight is already starting to drop. I see you said she checks her bp thru out the day. You didn't say if she checks it upon waking, while still, still in bed, before she starts moving around a lot in the bed. Have her check it right upon waking, even if it's in the middle of the night. That was how I found out I was also having hypotention when I sleep. My sleep is almost never refreshing. I too can tell when bp is up I start feeling real jittery and flu like and my high heart rate makes me feel very fatigued. If you do try to go backwards and do the add back with the meds, just make sure they can be stopped suddenly without side effects. I know once you've been on a beta for a while, you have to wean down to get off of it, because you'll get real sick if you stop suddenly. I will let you know if we find something that helps me, since your wife and I seem to be presenting in a similar manner. I just don't even have the answer for myself yet. It is so nice she has you, trying to help her figure it out.

Hey morgan, thanks for the input once again. I asked you another question in my post about the ACE inhibitors if you want to take a look at it. So I took the generic ativan last night. Of course I had an opposite reaction. Then I realized I'd been given it once before to take before an MRI and the same thing happened. I feel like I can't get any air in my lungs and then I get anxious, I ended sitting up for two hours until I felt like I could breath again. The label says don't take if you have breathing or apnea issues because it slows respiration. I've suspected for some time that something isn't with my sleep, but haven't had a sleep study done yet. So cross this one off Ativan not for me. So morgan there must be a difference with the valium, because that one does get me thru an MRI just fine, though you get a bit loopy. That's interesting that this low dose helps your IO. I often think my autonomic system is in overdrive, maybe this might calm it down a bit. I startle real easy, but that response is also probably how I new something was going wrong with my exam. Do you notice if the valium effects your bp and hr one way or the other? P.S. I'm so sorry this happened to you too and the support system they provided you with was so weak and he only got a slap on the wrist. If you want to pm what happened you can. I am feeling supported by the agencies involved. I'm actually getting interviewed next week by our medical board, as well. They're the ones who decided if they will loose their license. They sometimes can still have a license after being convicted. It appears that this doc may have had issues in another state. So you are right about them moving around. I know what your saying about trying to found out, it's daunting. I asked the person at our medical board if they were aware he may have issues in other states, and they couldn't confirm or deny, but they do investigate before agreeing to license. They can put restrictions on as well. Since he had to have a nurse with him during the exam that probably was the restriction that allowed him to practice again. This dude's M O was so good he managed to get away with it in front of the nurses. Had an answer for everything! Hopefully this will be his last opportunity.

Hey, suzy, I was wondering when you were going to reschedule that appointment at Mayo. I hope you do it soon, it seems like a really important appointment for you to keep. Until this week I hadn't been posting much, cause I wasn't feeling well. But I was reading your posts and seeing that you have really been up and down a lot lately. So, please don't put off your appointment with Mayo any longer, they are the one place that seems to be of help to you. I also remember one of my cousins who I'm close to but lives in florida, best friend is a nurse at one of the hospitals by you. She and I became reaquainted when my cousin was in town for a visit. She is my age and is really a sweet person. I bet I could ask her to help you find a more suitable doctor up there where you live. Let me know if you'd like me to ask her. You can send me a pm of who you've already seen up there and some medical high lights that you want addressed, maybe she will know a doc that will be a better fit for you. As always hoping you feel better!

Oh mack's mom your question couldn't have come a better time for me My newspaper horoscope said yesterday, "there's a happy oasis in your mind that hasn't been visited in a while and this is just the time to go there." So I see god's hand at work thru you and the paper, letting me know that I'm going to be okay and I will get thru this latest ordeal and back to my happy place. In my heart I know I will, I'm a strong girl, and I'm always ready to fight for the underdog and help out where I'm needed. Perhaps that is why god has chosen me to been in this particular mission, I'm some one who does speak up and getting sick, taught me to understand what healthy boundaries are. So I new someone was violating my boundaries right away and I did speak up, not enough initially, but I did tell another medical provider in confidence and because I did it was documented. That documentation wiil help build a stronger case and will protect us from this person in the future. Fighting to get better, does make you stronger and better able to handle the other challenges in life that come at you out of left field. When I lost my baby, the silver lining to that was that we found out I had PCOS and that it was one of the things making me ill. I was able to get treatment for it. Since, then every now an again I will be speaking with someone I don't know well, and I will recognize the symptoms in them, by how they look or something they say and god will prompt me to ask about there health. When there is something wrong people often are happy to talk about it, because of that I've been able to suggest they see a doctor, at least 3 of them also ended up having pcos. I've learned so much about my medical related issues, that I never would have learned if I hadn't gotten sick. So getting sick has made me a better educated person. I think that is why this forum is so good, we all help each other learn and in turn we can help others. What a wonderful, wonderful thing. I may not be able to do the worlds work or be successful in a worldly way, but we can always do god's work. When you know you've helped someone it is always feels so good. As I was reading what the rest of you are saying, I'm thinking, Yes it taught me that too!! It's tough to be sick, but look at all the life's lessons and blessing we'd have missed out on, if we hadn't gotten sick. Thank you mack's mom for putting a smile in my heart and reminding me what's really important

Ricky I too always feel better when I get off my feet, but my bp will still drop pretty quick and then I get hypotensive during sleep. Does your wife check her bp when she wakes up, before she moves around? That will give her a baseline to be able to see where she goes from there during the day. Though I don't know how to treat my OI yet, I do think paying real close attention to your position, activity and what meds you are on when, will help flush it all out. I agree that she sure was put on a lot of meds at the same time, which makes it real hard to determine which one is doing what. Since you are experimenting, maybe you could pick the one you think is most helpful and take only that for a week, then add the others back in one at a time. Make notes of how she feels and symptoms noting the time, activity and position and of course the med. This was how I figured out that after 4 different beta's that they were actually making my hypertension worse. This is a documented response possibility know by the drug makers. My nurse assigned to me by my health plan, told me "oh yes that can happen with beta's, they can cause worse hypertension". So if your wife is primarily hypertension and tachy, like me the beta's might not be the best choice. Until we figure out what to try next, I do have 10 mg of inderal to knock my heart rate down if it gets real bad, I've found that even 5mg will work to do this. But, I will get rebound hypertension when I do take it. Interestingly 2 muscle relaxers, flexeril and tizinidine do the same thing to me. hope this helps