Broken_Shell

Hi Maxine, I am sorry for all of your pain. I agree with the idea of printing your post and handing it to the doctor. I know what you mean about being afraid of loosing doctors though. I feel that way a lot - I find a new doctor who seems to understand and believe my symptoms, and then they see my huge stack of medical records and history of multiple physicians and tests and dismissals of my symptoms before I was finally diagnosed with dysautonomia and I think that they begin to doubt me. Or, I develop a new symptom and then feel like no one wants to look into it because of everything that I had done in the past, even if I didn't have that symptom when the previous work-ups were done. I send support and good wishes your way. Keep us posted and remember that we are keeping you in our thoughts and understand what you are going through. ~ Broken_Shell

Hi Mae, Just a few thoughts on your question about the menstrual symptoms. I also experience a worsening of symptoms with changes in hormones and am currently looking for a hormone therapy to suppress any natural fluctuations in my hormones. (I am 27 years old). Since hormone fluctuations cause a lot of changes in various body systems, there are a lot of autonomic comprensations that must take place. For those of us with dysautonomia, our bodies cannot make these adjustments properly or handle these changes. Also, having your period causes blood loss - something that your body must also compensate for and react to, and I believe this contributes to the problems with increased autonomic symptoms related with the menstrual cycle. It makes sense if you think of it this way... our bodies can't handle it when we go from laying to standing or pass a bowel movement, etc. Therefore, we can't expect them to handle a ten-fold change in hormone levels. I hope that helps explain my theories on your question. ~ Broken_Shell

Hi, Sending hugs and support. Hang in there - pray, listen to music, try to focus on watching a movie... you are not alone! Don't hestitate to go to the ER - they just might have something to help the pain or can at least monitor you. Keep us updated! ~ Broken_Shell

Good luck! I'll be waiting to hear how it goes. Just imagine it being over whenever it gets hard. Every hour survived is one more hour closer to being done. Just a note. When I ate for the first time after my hospitalized fast, I got really nauseous and dizzy, so be careful what you eat first - something plain and small might go best after your GI tract has been dormant for several days! ~ Broken_Shell

I think people have discussed this in the past, but I just wanted to throw in a note that the beta-blocker medications are known for causing vivid dreams and disturbed sleep. This is a side effect from them that many doctors and pharmacists forget to mention. ~ Broken_Shell

Hi Ana, I had an upper endoscopy last week with sedation. I was VERY afraid that the sedation would cause problems with my dysautonomia, but it went ok. The only problem that I had was that it took longer than expected for me to wake up and be able to sit and stand after the procedure. The nurses and doctor were very nice and I stayed in the hospital for several hours longer than expected until I felt stable enough to sit up and make it to the car in a wheel chair. Good luck making your decision. ~ Broken_Shell

Hello, I have noticed that several people on the forum have made comments about discomfort in the region at the base of the head and upper neck junction. I experience a lot of pressure and tightness in this area, as well as a sensation like there is something "quivering" in the base of my head where my neck begins. For years, I saw many doctors for this problem, telling them that there was something wrong with the area where my neck joins to my head. I had x-rays, mris, evaluations, etc. that didn't show anything structurally abnormal in the area. I am just wondering if anyone else can relate? Have you found anything to relieve these symptoms? Thank you, Broken_Shell

No, that's a good question. I am guessing it is really underdiagnosed though since so many physicians don't recognize or understand it. ~ Broken_Shell

Hi Michele, HUGS, HUGS, HUGS, & MORE HUGS I know that you know my story, so I am sorry that I can't offer you any hope in that regard. However, I understand about church and having older people misjudge you because they assume that because you are young, then you must be healthy, so they give you that "today's youth" look. I also can no longer participate in the normal standing and sitting pattern of mass at church. When I don't feel well enough to go to church, then I watch a televised mass on Sunday mornings. Otherwise, if I can go to mass, I always go to the Saturday service at 4:00 pm since my symptoms are so bad in the mornings, and I sit off to the side or in the back so as not to draw attention to myself. I also have to check my blood sugar and eat in church often because of my hypoglycemia, so I just try to be as conspicuous as possible. About a year ago I had an experience that really made me feel bad. I was sitting in a wheelchair at the entrance to the doctor's office waiting for my ride to pick me up after an appointment. An elderly man and his wife came to the door, and loud enough so that I could hear, the man said to his wife, "Young people are so lazy and disrespectful today. That girl just sat there in that wheelchair watching us instead of getting up and opening the door when she saw us coming." I was absolutely floored, and I felt bad because I know that a lot of people pass judgement without knowing what is going on with someone. I feel the same way when I am out with my mom in the store and she is helping me and getting things for me while I just sit in a chair and people look at us with an obvious look of disapproval. One of my preceptors in pharmacy school had a saying that I thought was really good. She'd say.... "to assume is to make an *** out of u and me." Hang in there! Send me a PM if you want. I may be woozy, but my ears and shoulders... ok more like eyes.... are working... I think! ~ Broken_Shell

Hi Everyone, all4family... my thoughts exactly! "Not that it is just a pile of symptoms together, but really to describe how difficult life can be when you don't know what to expect from moment to moment from your own body. The way that little things that others take for granted takes a huge amount of effort for us." So many doctors and people just look at this list of symptoms and then don't realize how debilated we are because of them. They see little parts and have a hard time seeing the big picture. Sometimes when I log on to the forum and read these things that I have either thought myself, said to others, or completely understand and could not have said any better, I feel like the "Cheers" theme song should start playing in the background . Even though we are all suffering everyday, there IS strength in numbers, even if it's just in the form of support, reassuring messages, and electronic hugs! ~ Broken_Shell

Hi Jan, If I go in the car when it is warm or sunny, I take ice packs or cool wash clothes with me that I put on the back of my neck and my face. I hope that might help you some too. ~ Broken_Shell

Hi Miriam, What is masto? Are you talking about MAD? I have seen people talking about that on the forum and would like to read more about it because the few things I have read seem to pertain to me. Thank you for clarifying! ~ Broken_Shell

Hi Cat Lady, Based on the way mestinon works in the body, it is possible that it will slow your heart rate. Everyone responds to medications differently, but I hope that you get this positive "side effect" from starting it. The down side is that you may become tolerant to it and your heart rate might initially slow down and then speed back up like dsdmom experienced. Good luck. I'm keeping my fingers crossed for you. Let us know how things turn out! ~ Broken_Shell

Hi Jana, Midodrine is unlikely to cause weight gain. It actually does not cause fluid retention, so you shouldn't be gaining water weight. If you continue to gain weight on it, you should mention it to your doctor. I don't have any personal experience with it; this is just my pharmacy knowledge talking. But, everyone does respond differently to medications, so regardless of my formal education, I wouldn't ever say that a certain side effect is impossible from any medication. Hope that helps. ~ Broken_Shell

Hi, I have a lot of problems with hypoglycemia. I do find that I do better if I avoid potatoes and white rice and "white" pasta, but like many people who have posted on this topic, I NEED to eat a lot of carbs. I tried eating low carb (meat, vegetables, and grains like quinoa and aramanth) and I felt absolutely AWFUL. My blood sugar stayed SO low I could barely even get myself dressed after a breakfast of eggs and vegetables. I feel MUCH better as long as I eat a lot of carbs, but I do better with a lot of fruit and brown rice, brown rice or whole wheat pasta, etc. It works best for me to combine the carbs with either meat, eggs, or nut butter. ~ Broken_Shell

Hi, I too have problems with the sun. I also no longer sweat in response to being hot, but my reaction to the sun seems independent of just feeling overheated. Even after a couple of minutes in the sun, I begin to feel woozy and unwell. I do not know whether or not it is just a result of the dysautonomia, as I also have various hypothalamic abnormalities. I believe that our abnormal response to heat and sun may just be due to the fact that our bodies cannot process and respond to temperature changes correctly, so they set off inappropriate autonomic symptoms. ~Broken_Shell

Hi, I have a lot of proprioreceptive disturbances and feelings like I am falling or woozy that are different than feeling lightheaded or dizzy. I am also very sensitive to position. For example, I can't stand or lay on something that is even the slightest bit unlevel because I start getting very woozy and tightening up my back and neck. ~ Broken_Shell

You will both be in the prayers! I hope that she is past the worst. ~ Broken_Shell

Hi Dani, Unfortunately I have gotten worse over the past seven years. However, I don't want to scare you because everyone has different experiences. Whatever happens though, try to stay positive. No matter what happens to your body, your outlook and attitude are things that you can still control. ~ Broken_Shell

Hi Yogini, Thank you for letting us know how your appointment went today. My personal experience with chiropractors was not good. After a couple of adjustments, I developed worse muscle tightness and dizziness. I saw two different chiropracgtors and had the same experience with both. I am pretty sure that the chiropractic adjustments set off a pain and muscle tightness condition and problem with wooziness that I have been attempting to resolve for several years now. Everyone has different reactions to things, but I found the adjustments to be too harsh and they made my symptoms a lot worse. ~ Broken_Shell

kansasgirl8605, This a quick link to wikipedia...you can Google for more information on nesidioblastosis. http://en.wikipedia.org/wiki/Nesidioblastosis ~ Broken_Shell

Hi Mae, Welcome aboard. I am sorry about what is happening to you, but I hope that you will find the forum a great source of information and support. Hang in there and feel free to browse old post topics and ask questions. You will probably sit in front of your computer with your jaw dropped saying, "oh my gosh... I didn't think I would ever heard someone else say that!" Well, that is if you can sit at the computer long enough with having a 1 year old and 2 year old! I applaud you for trying to stay strong and positive for them. Take Care, Broken_Shell

Hi kansasgirl8605, I didn't have any episodes of hypoglycemia during the 36 hour inpatient fast. Unfortunately, they did stick me every hour (either finger stick, blood draw, or both) to check my glucose level. It would have been nice to have a line to draw off of, but I am used to checking my blood sugar about 12 times a day on my meter, so it wasn't too bad for me. The lowest my blood sugar has ever been was 41, and the doctor told me that they needed a value less than 40. I thought, "well, if I feel awful and am very symptomatic, shouldn't that be sufficient?" I plan to pursue my hypoglycemia problems again once I get some new symptoms that I have developed stablilized a little better. What I know is that I have an enlarged, hypertrophic pancreas, rapid gastric emptying (I have something like "dumping syndrome" even though I have never had gastric surgery), rapid and inappropriate drops in blood sugar after eating that are inconsistent and independent of what I eat, and "suspicious" insulin levels. The endocrinologists have talked a little bit about the possibility that I have something called nesidioblastosis, but I haven't had much work-up done for it. You are right though, if you have an insulinoma then your hypoglycemia should be triggered by fasting. One suggestion I have is that if you have orthostatic issues, make sure that you stay hydrated during the fast and get plenty of water even if you are not eating. I wish you luck. Please feel free to PM me if you have any other questions that I can answer for you. Keep us posted next week on how things go at the hospital! ~ Broken_Shell

Hi futurehope, I have the same situation. I have really rapid, sudden drops in blood sugar. My sugar can literally drop 40 points in under 10 minutes. I react more to these rapid changes than to the actual blood sugar values as well. If my blood sugar goes from 100 to 70 in 10 minutes, then I will be really symptomatic. However, if it goes from 80 to 70 over an hour, then I feel much better. It sounds like you haven't gotten any good diagnosis or direction on this either. I have looked into and tried a lot of things. Let me know if you ever get a good answer or solution to the problem of rapid drops in blood sugar or inability to maintain a stable blood sugar with activity. Thank you, Broken_Shell

Hi, I have problems with hypoglycemia and maintaining my blood sugar during activity. Back a few years ago when I was still able to do light exercise, the only way I could do it was to eat a snack immediately beforehand. I would wait until my blood sugar was in a good range on my glucose meter before starting activity and also check my sugar again about halfway through my 10 to 15 minutes of gentle exercise (usually walking in a pool or outside on the sidewalk). ~ Broken_Shell