Broken_Shell

Hi cma, I don't take a beta-blocker, but I do have a circadian pattern to my symptoms too. I am very bad in the morning and my body can't get itself together at all. Things generally become more tolerable towards the mid-afternoon, with my best time being 9 to 11 pm. The only exception is that eating dinner usually sets off another flare in symptoms. I wrote a post when I joined the forum about a circadian pattern where symptoms are worst in the morning and got many responses. I think that our unbalanced autonomic systems just have a difficult time transitioning to being up and having our bodies moving... our systems want to get going after the night, but they are unable to because of our dysautonomia and this creates a lot of stress on the body. Also, catecholamine levels are naturally highest in the mornings, so this may contribute to our difficult mornings as well. ~ Broken_Shell

Hi Dani, I am so sorry that life is becoming so difficult for you... I understand completely. I am sending you a big hug . I will be turning 27 years old on Thursday this week, and come May 2009, I will have suffered from dysautonomia for seven years. The first few years after I developed the condition, I had to decrease my activity level, but I was still able to function well enough to finish college, engage in gentle exercise, and spend time with my friends doing light activity such as going to the movies or playing games. I didn't feel well, but I could push through it. In the last three to four years my condition has become a lot worse, and I am unable to function to do even basic activities on most days no matter how hard I try. I had to drop out of graduate school in May 2007, and I can no longer drive or care for myself on a day-to-day basis. I am basically house-bound, with the exception of leaving for appointments or to ride along in the car on short errands with my family. I have to push myself more and more an can do less and less. It is scary because I don't know how I'll be a year from now, or when I am 30 for that matter! Most of my interaction is with my immediate family, although I do talk with several friends on the phone on a regular basis. I am fortunate to have a couple of very understanding friends who come to visit me when they can, and they sit and talk with me or watch a movie or play a game, depending on whether or not I am up to any activity. I feel awful because I have had to cancel plans time and time again, have missed friends' weddings, and been unable to attend get togethers. I wish that I could give you good advice, but unfortunately I can only offer empathy and tell you that the best thing to do is be honest with your friends and family. Push yourself, but not to the point that you are making yourself more sick. Hopefully they will be understanding and realize that you are trying the best you can. Hang in there! We are all hanging with you... although it seems like we have all been hanging there by just the tip of our pinkies for a long time and there is no end in site! All we can do is be realistic with ourselves and others and do the best that we can. Even when "abnormal" becomes "normal", try the best you can to keep a positive mind set. Although it is not fair that many of us who should be in the "prime" of our lives can barely manage each day to get dressed, make our food, and do minimal tasks, I encourage you to modify everything you do to be broken down into little parts, like all4family's laundry posting. It might seem silly and frustrating, but it will help you feel like you can still accomplish something if you put your mind to it. Hugs & Best Wishes, Broken_Shell

Hi KansasGirl, You'll be in my thoughts. I did the inpatient fast to rule out insulinoma in November 2007. It was very hard, I won't lie. I didn't think I could do it, but somehow I survived. My endocrinologist was empathetic though and said that we would try 36 hours, rather than 72 hours since I had never had any hypoglycemic episodes while fasting. I only experience hypoglycemia in response to eating. Good luck, be strong, and let us know how it goes. ~ Broken_Shell

Hi! I am glad that you made it. Thank you for making me smile . It is crazy how we break activities down until they can't possibly be broken down anymore! Here's to living life in our awful, unfair state of dysautonomia while maintaining a sense of humor! ~ Broken_Shell

Hi There, I don't want to "re-invent" the wheel, and thankful put it very well. In the interest of responding, while at the same time really needing to lay down, I will copy and paste because I feel the same way. I have had worsening dysautonomia for seven years now... May 2009 will officially be 7 years, and I can't believe it's been that long! Nope, never feel normal. I'm beginning to forget what normal feels like... well, in my case I think I may have officially forgotten. I just try to deal with how I feel on a day-to-day basis. I realize how sick I am when I spend time with my family and friends and see how much they're able to do! I try not to think about it too much because I know I'm doing everything I can to make my situation better and there's nothing else I can do right now. ~ Broken_Shell

Hi There, I don't think I've communicated on many of your posts yet, so I send a hug and friendly hello . Don't worry about the ER trip and the frustration... we are all feeling it, and it is just a natural response when we are scared and never feel like our bodies are even remotely stable. Can I ask, what problems do you have with your blood sugar? I have daily episodes of sudden hypoglycemia and have had several pancreas MRIs (which did show that my pancreas is mildly enlarged, but no specific tumor or inflammation). I was also admitted to the hospital for an inpatient 36 hour fast to rule out an insulinoma, even though I don't have any hypoglycemic episodes while fasting. My hypoglycemia is not related to diet and has not responded to the numerous dietary changes that I have made throughout the past seven years. Can you tell me more about your insulin and blood sugar problems? I haven't read much about hypoglycemia on the forum, but it is a big problem of mine. Thank you and Be As Well As Possible, Broken_Shell

Hi Kimi, Do you have a primary care doctor who you can call? Even though it is the dysautonomia, my internist put me in the hospital as an inpatient twice in the past year when things were really bad just so I could get some IV fluids and let my GI tract rest and settle itself down. Can you keep down Pedialyte? If you are really getting weak and dehydrated, then maybe someone can at least take you to urgent care or the ER to get some fliuds and IV nausea medication if your PCP or the doctor managing your dysautonomia can't or won't. Hang in there... I'll keep you in my thoughts. ~ Broken_Shell

Hi Rene, Thanks for clarifying about the bp fluctuations. I have to tell that I laughed when I read your response "Seems like none of the drs speak to one another. They just write letters of the visits and I guess it just gets filed in my chart! Gone are the days of drs truly caring." I couldn't agree more. I have practically begged my endocrinologist/neurologist/gastrenterologist/reproductive endocrinologist/OBGYN to talk to one another instead of each looking at their own little parts. I feel like saying... "Hello - some communcation would be good here. After all, I am a whole body, not a collection of disjointed systems, and I have a very complex condition!" Anyways, hormone questions... First of all, do NOT cut the Vivelle in half. The way the patch is made, the hormones are sealed in the patch, and if you cut it then the hormones will all leak out at once. If you want to try just a half dose, then just leave the backing on one side of the patch and use a band-aid or piece of medical tape to keep it down, but don't cut it. The lowest dose it comes in is 0.025 mg. Next, I can forsee no danger if you just remove the patch after having it on for 4 days. Most likely, you'll just have an increase in hot flashes and the other vasomotor symptoms you were experiencing. It doesn't sound as though the patch had decreased them though anyways. I was off of the Vivelle and then went back on it several times of varying lengths. The longest I was ever off it was 4 months, and the shortest was 2 weeks. Starting it after being off of it pretty much always made me feel more anxious until my body got used to it, but it only lasted a few days before I started feeling more like myself. I hope that helps. If I can help support you anymore, just ask. Good luck! ~ Broken_Shell

Hi Rene, I am sorry to hear that the Vivelle is causing you problems when you were hoping it would help! I have a few thoughts and questions... The 0.0375 mg patch is a fairly low dose. When I was off of the Vivelle for a period of time and then went back on it, I initially felt more anxious and jittery for a couple of days while my body adjusted to the change in hormones. The symptoms generally passed after 2-3 days. That being said, it won't hurt you to take off the patch and wait to speak with your regular doctor to get her opinion. Did the blood pressure fluctuations just start in the past few days since starting back on the patch? Was your blood pressure stable or more stable before Wednesday? The only way to know if the patch is causing any of your symptoms or change in symptoms is to take it off, monitor yourself, and then put it back on and see if the same things happen again. My situation is different than yours because I am in my 20's, but I feel the best on the 0.050 mg dose of the patch. Anything higher and I feel like climbing the walls, anything lower and I am getting hot flashes, night sweats, and heart palpitations. My advice would be to follow your instincts. If you feel like it would give you piece of mind to take off the patch for now, then you should probably do that. Otherwise, if you ride it out through the weekend then you can give your OB/GYN a call on Monday and let her know everything that has been going on. Maybe your cardiologist, OB/GYN, and endocrinologist could all talk to one another to figure out what the best plan is. One more question, what specific symptoms did the MDs think the Vivelle might help? Hot flashes, heart palps, and night sweats or other autonomic symptoms? Good luck. Keep us posted on what you decide and how you're doing. Do you have someone home with you in case things get really bad with your blood pressure? If not, then make sure that you keep the phone in reach in case you need to call for help. ~ Broken_Shell

Hi & Welcome! I am sorry for what you are going through, but I hope that you will find a lot of support and good advice on the forum. As far as being positive, dysautonomia is a crazy journey and you will have good days and bad days. All of us have periods of sadness, anger, frustration, etc. but it is important to take things one minute at a time and focus on the small things. Be grateful for what you do have. I know it's easier said than done, but I agree with firewatcher, your attitude is one of the few things that you do have control over with this condition. The unfortunate reality is that we don't realize what we have until we lose it. For example, I used to be frustrated because I couldn't exercise like I used to (I used to be in dance, swim, run on an eliptical, etc.) and now I can barely stand and walk. At the time, I was thinking "I can do so much less than I used to," but I didn't realize then that what I had several years ago was a lot compared to where I am now. The best advice I can give is to really, really try to look at your life in terms of what you do have and still can do, even if it's in modified form. If you have good support people, if you can walk outside to get the mail one day, if you make it to the store and back, if you feel well enough to spend an hour with a friend, etc... be grateful for these things. It may also be helpful to join a support group or find other people in your area with dysautonomia. Once again, welcome to forum. I look forward to seeing your posts. ~ Broken_Shell

Hi Dani, You are not alone . I completely understand, as I am also afraid of trying new medications. I have had numerous bad and inappropriate reactions, even when trying small doses or relatively "benign" medications. It is kind of ironic because before my dysautonomia progressed to the point of being unable to work or finish graduate school, I was months away from completely a doctorate degree in pharmacy and medicine! Here is what I can recommend... 1. Tell your doctors how sensitive you are to medication. Make sure that they understand that you are NOT exaggerating or anxious! 2. Take only fractions of doses to test and see how you react. Get a pill cutter and literally cut and take 1/6 or 1/8 of a dose. If it is a capsule then open it up and pour some medication out. 3. You can also talk to the pharmacy and ask them to compound some medications into liquid forms, this way you can take very small amounts of them using a measuring spoon or medication dropper. I hope that helps... and be brave! ~ Broken_Shell

Hi Ana, They sounds like PVC's to me. Perhaps you want to talk to your doctor about having an event monitor or holter monitor to confirm whether it is related to your heart or not. Keep us posted! ~ Broken_Shell

Hi Ruekat, What dose of the patch are you on? I have been on Vivelle Dot for about 6 years now, and have tried to coem off of it several times, only to experience an increase in autonomic symptoms and fatigue. It only takes just over 24 hours for the blood levels to become steady once you put the patch on, but it can take several weeks for your body to "calm down." When I was off of the patch and went back on, I usually started to feel better after about 3-5 days, but it took me several weeks to really feel like my body could get itself back under better control. How are you feeling now after several days? I hope that my experiences help give you some insight. By the way, I was put on the patch at age 21 because I stopped getting periods, had constant low blood levels of estrogen (less than 20), and was diagnosed with osteoporosis. Good luck and keep us up to date. Keep in mind too that if Vivelle doesn't work, there are other options out there. P.S. Did your doctor put you on any type of progesterone regimen to go with the estrogen? ~ Broken_Shell

Hi All, I am the same way. I am 5'2" and down to 91 pounds now. I lost about 15 pounds when I first got ill, and after being a stable weight for several years, I have lost nearly 10 pounds in the past two years as my dysautonomia has gotten worse. It is strange because all I do is lay on the couch all day and eat six to seven times a day. I know that I have lost a lot of muscle mass, and I think that at least some of the weight loss can be atributed to that, since muscle supposedly weighs more than other tissue. I also wonder if it is related to the amount of stress dysautonomia puts on the body, and whether or not it makes us somehow "hypermetabolic". It is still scary for me because I am afraid that my body will keep getting weaker. It is nice to hear that others are experiencing the same thing though. ~ Broken_Shell

Hi, I am sorry that you are struggling so much. I would suggest that if this fatigue is a change for you, then it would be a good idea to have a geeral work-up down by your MD just to check your blood counts, thyroid, etc. That being said, I also suffer from fatigue. Sometimes it is quite severe and I can barely keep myself sitting up, let alone do anything productive. This is all part of dysauotnomia and the fact that our bodies are constantly under so much stress just to keep our systems close to "functioning"... you know what I mean. Anyways, while fatigue is a symptom of depression, it would likely accompany other symptoms. Specifically, if you are interested in doing things - getting out of bed, washing up, getting dressed, leaving the house, etc. but you just don't feel well enough to do them, then I would say what you experiencing is less likely to be depression. Personally, I have tons of motivation and mental energy to do things, I just don't physically feel well enough to do them. One more thought, there are some medications that can be used to treat fatigue in patients with CFS, multiple sclerosis, etc. It might be worth taking to your doctor about. There's one called Provigil, and then the SSRI "anti-depressants" can sometimes help with this too. You'll be in my thoughts! Hang in there! Let us know if anything changes... for better or worse. ~ Broken_Shell

Hi Ken and Jen, You raise a good question. I could be wrong, but this is what I understand about the test. If you are sweating before they even put you into the heated environment, then they could diagnose you with hyperhydrosis. The test involves covering you with a dry powder that turns purple when it gets wet (i.e. if you sweat). Once you are in the heated environment, then once it turns purple it means that you are sweating, but there is no gauge of how much you are sweating. I suppose that if you sweat so much that the powder runs off and there are literally puddles of sweat around you, then they should be able to diagnose hyperhydrosis, but beyond that the sweat test is mainly subjective. This would probably be a good question to raise with your doctor before you undergo the test. Let me know what you find out... I am basically ahydriotic, but I am still curious to know the answer to this question. Good luck with the testing! ~ Broken_Shell

Hi Ricky, I am glad that you and Michelle continue to try different things and ask questions. Even though it is frustrating and disappointing, all of us with dysautonomia need to believe that if we keep trying then somehow we just might find the right combination of treatment that will allow us a somewhat functional life. What that combination is for me, I have no idea but I know that we all need to keep searching and supporting one another. Please share those thoughts with Michelle. Now, on to your questions. Here are some thoughts that I have... 1. Regarding the heart rate and blood pressure issue. Yes, low blood pressure can increase heart rate. In a person with a fucntioning autonomic system, raising the blood pressure will lower the heart rate. However, Michelle does NOT have a fucntioning autonomic system. I think that the doctor's initial approach of using the midodrine to try and lower the heart rate is a good first step, but if her BP is increased and in a normal range and the tachycardia is unchanged, then the tachycardia is likely the result of the autonomic dysfunction and not a low BP. I would agree with your decision to try and go back on a beta-blocker if Michelle can tolerate it. You are correct, there are many out there to try and everyone's body reacts a little differently to different medications, even if they are the same type of medication. I hope that the doctor is willing to work with you on that. If he is not, then I hope that you can find another doctor who will. 2. The question about the SSRI's/SNRI's. It is unclear how these medications can prove helpful for people with dysautonomia. I have read some information stating that in certain patients, these types of medications appear to "reset" the autonomic nervous system. It is certainely worth a try, although I don't know whether or not Cymbalta has been looked at or used by many people on the forum.... perhaps you were thinking of Celexa? The thing to remember with these medications is that they can take 6-8 weeks for their positive benefits, and they can cause a lot of side effects and be difficult to tolerate during the initial month of use. If you do a search for "anti-depressants" on the forum, you will find a lot of posts and people's experiences. 3. I also have the ear flushing. I get it in only one ear - always my right ear. I believe that it is just an autonomic "oddity" that signals stress on my body. I often have the ear flushing accompanied by an increase in symptoms or as a precursor to an increase in symptoms. Flushing can also indicate an allergy, so this is something that you may want to consider too... it may be useful to write down when it occurs and look for a connection with a certain activity, food, medication, time of day, etc. 4. I'm not sure about the heart pounding. I experience sensations with my heart where it just feels like it's working too hard or "struggling" and just not right, but it's not specificallyt racing or skipping beats. She might just be feeling the force with which her heart is beating. The beta-blockers could help with this, as they decrease strength of heart contraction in addition to heart rate. I wish you both the best. Please keep us all up-to-date on how things are going. Also, I might suggest starting a new forum topic next time you post because this thread is getting really long and takes a lot of scrolling to find the end of. Let Michelle know that both of you are in my thoughts! ~ Broken_Shell

Hi Ken, The test is abnormal if you DON'T sweat. If you don't sweat, this means that your body doesn't take the correct actions to cool itself when it gets hots. Hope that helps clarify. ~ Broken_Shell

Hi Ana, If you are having lower abdomnal pain, then you should check with your doctor before you start treating possible GERD symptoms on your own because it could be a sign of something more serious that might need to be checked out. If it is GERD, then depending on how frequently you get these symptoms and how well you tolerate different medications, your options are antacids (to use when you have the symptoms), something like Pepcid (to use either when you have the symptoms or to prevent them), or something like Prilosec (to use on a regular basis to prevent the symptoms). Your doctor can also write you a prescirption for one of these medications if you have good insurance coverage. Other ideas that might help are eating small meals, avoiding food triggers (sounds like you are already doing this), and avoiding laying down for 3 hours after eating (yes, this might be a difficult one for those with POTS!). I hope this is helpful for you. Best Wishes, Broken_Shell

Hi jjb, I don't know much about you, but what type of cycle have you noticed? There has been a lot of discussion about symptoms changing with the menstrual cycle - if this pertains to you - have you noticed there is a monthly cycle to the symptoms? Otherwise, I can say that in general my symptoms cycle in intensity through the day, with the first half of the day barely tolerable, and then occasional late evenings (usually 9 to 11 pm) where I feel mildly functional. I read some threads on the forum where other people experienced a similar circadian cycle to their symptoms. Have you tried writing down everything that you do, eat, etc. to see if there is a relationship? Best wishes in finding a way to spend more time in the "better" part of the cycle! ~ Broken_Shell

Hi All, It has been interesting to read everyone's thoughts. I have looked into this area of mind-body medicine a little. I had two appointments with a nurse turned psychologist whose practice emphasized "mind-body" theories, but found it wasn't for me. I have a couple of thoughts on the topic. One is that mind-body medicine is based off of "accessing" and using the autonomic nervous system to create a physical change in the body. Well, for us that means trying to fix something that is broken with the thing that is broken! I definately think that people can improve themselves through positive thinking and such, but I think that practice has limitations when it comes to physical-driven conditions like dysautonomia. Sure, if someone started getting autonomic symptoms - increased heart rate, dizzy, sweating, out of breath, etc. because they were nervous about public speaking for example, then I think that this type of medicine could help them. For years, before I understood my symptoms I thought, "why am I getting 'anxiety-like' symptoms because I had a bowel movement or because I stood up and walked down a hallway? what is going on? I don't feel mentally or psychologically anxious about going to the bathroom!" Besides, I think that I (and probably most of us) use a lot of positive thinking and "self therapy" just to get through each day. Everytime I try to stand up and wash a few dishes or do whatever other task, I am constantly saying to myself "You're fine... your body is struggling but you will make it through this 5 minute activity. Just trust that God will get you through. Be strong. Be fast. Be brave because you are stronger than your body and you can do this." I certainely wouldn't discourage anyone from trying anything that might help them manage better, especially if they experience anxiety or depression over their dysautonomia. Different things work for different people, and I think that each of us is so incredibly in-tune with our bodies that when we try something with an open mind, I think that we have a pretty good judgement as to whether or not it will be beneficial for us. ~ Broken_Shell ... ok, maybe that smile is an exaggeration this morning!

Hi Suzy, I send hugs, hugs, and more hugs. I hear you. I finally started some long overdue Spring cleaning, and I feel the same way. I am trying to clean in 10 minute intervals, and I can barely manage. Today I pushed myself so hard just to be able dust one dresser... I was nearly clinging on to the dresser and praying "please God, just let me dust one dresser - just let me get this one thing done." All said, it took five minutes, but it took a lot longer than that to recover from! At least I could be proud that one dresser got dusted. Maybe I can dust another one tomarrow. It is crazy the way that we have to try to do things. Like you, all I want to do is be well enough to clean, grocery shop, wash every dish in the house, do laundry, etc... even take care of my pet hermit crabs without getting ridiculously light-headed and out of breath and praying that I make it back to the couch to lay down. It is amazing the things that can be taken for granted and complained about by people when they don't realize what a blessing having the ability to do these things really is! Hang in there - we are all here supporting one another. Good luck with your next attempt at laundry... who knows, maybe we'll both accomplish something yet this week. I'll be in the hospital for some testing on Wednesday and Thursday, but maybe I can dust one more dresser before the weekend... maybe even a bookcase if I get really lucky! Hugs Again, Broken_Shell

Hi Kimi, Welcome to the forum, although I am sorry for what you have been through to get here. I hope that you will find a doctor that your insurance will cover who will be able to work with you. Do you have a means by which to appeal the insurance denial of coverage for an evaluation and physician office visits? I hope that you will find a lot of support and advice on the forum. ~ Broken_Shell

Yogini, Sounds like a good starting point. I have tried trigger point injections, and I am thankful each day that I have found kinesiotape because it has really helped me quite a bit with my myofascial problems, so let me know if I can help you find any other information. Good luck! ~ Broken_Shell

Hi all, I have this on various places on my body, mostly legs and abdomen. The doctors always comment on it and ask if I have had a rheumatological work-up. For me, it doesn't do anything bothersome and isn't really associated with anything that I have noticed. I usually have it on some part of my body all the time. As far as I know, it is just the result of sub-optimal vasodilation/vasoconstriction balance of the skin vasculature. ~ Broken_Shell