Broken_Shell

Eating often makes me feel more dizzy and have increased headaches. At times I feel like I am being "sucked into a black hole" - i.e., it generates a lot of bizzare autonomic symptoms. I think that it is because eating involves so many autonomic processes and our bodies are struggling with dysfunction of the autonomic system. I have been this way for years, some days worse than others. Does anything else seem to be associated with your developing these symptoms? Broken_Shell

Hi Rene, I am glad that you made it to and through the procedure. It must have been scary for you, and I know that you are still not feeling well now. Just keep reminding yourself that the prednisone got your ANS all hyped up and if you can just hang in there, you should start to feel better in a few days. Also, no worries about tapering the prednisone - there is no need for that since you had such a short course. I am happy to hear that they didn't find any blockages in your arteries though. Good luck changing the dressing - maybe bring the supplies you need close to the bed or couch and keep a cool wash cloth close at hand incase you start feeling worse or lightheaded while dealing with the dressing. I am sending you positive thoughts and a quick recovery! ~ (Michelle) Broken_Shell

My thoughts & prayers are with you. I hope you are feeling stronger soon. I hope that what you have doesn't turn out to be this swine flu either! ~ Broken_Shell

Hi, One of the side effects of Mestinon is that it keeps your muscles contracting more than they would otherwise. They are less able to relax, and I believe that this could lead to increased fatigue. That is my pharmaceutical knowledge speaking. From personal experience, I only took Mestinon for about a week, and I remember that I always felt like my muscles were tight and cramping, and then I felt like they were ready to give out. I agree that I wouldn't want to make any major changes before a big move, especially if the Mestinon is helping some of your other symptoms. Maybe if you can hang in there and make it through the move, you'll be able to see if the fatigue lessens once your stress level has gone down some. Good luck with the move and the meds! ~ Broken_Shell

Hi Radha, We must have a lot of similar symptoms! I do get itchy feet from blood pooling when standing. If it is warm and my usually cold hands are vasodilated and warm, then I get itching in them as well! I think the blood pooling and itching are related. ~ Broken_Shell

Hi, How high is his albumin? Elevated albumin can occur in dehydration. Has his albumin been normal in the past? I have had slightly elevated albumin levels in the past and no one was ever very concerned about it. Like some of the previous posts said, low albumin is more of a red flag, depending on how elevated the level was. Good luck. I hope that everything works out well for you and your son. ~ Broken_Shell

Hi Cat Lady, For beta blockers, the goal is to have resting heart rate between 50 and 60. As long as your heart rate is above 50 while resting and you are not having symptoms of light-headedness, dizziness, headache, etc. (I know, hard to distinguish from dysautonomia!) then I think you should be ok. ~ Broken_Shell

I am so happy for you. Those little improvements are so precious, and few can appreciate them the way that we do. I hope that things continue to move in a positive direction for you !

Hi, I have gotten substantially more symptomatic and less able to stand and ambulate in the past year. Yesterday I went to look at frames for a new pair of glasses I need. I wasn't haven't one of those rare "good" days and wouldn't have gone out of the house except for the fact that my vision insurance benefits end on the last day of April, so I don't have much time to get the glasses ordered. I made a good attempt. I managed to practically crawl into the store and try on a few frames sitting in a chair, but then I started feeling too unwell to continue. It took me almost a half hour to make it back to the car (the glasses store unfortunately was in a mall without a door directly from the parking lot to the store, so I had to walk about 1/4 length of the mall). It was really scary and I have no clue how I made it out of the mall, but somehow I did. I was praying and walked a few steps at a time before resting and then trying again to go a little further. Once my mom and I managed to get me outside the mall, I crouched down and leaned against the wall while my mom pulled the car up to where I was waiting. I hate that it has come to this, but I think that I need to look into getting a wheelchair or scooter so that I can have a better chance of managing short errands because what I'm trying to just not working. I am wondering, for those of you with wheelchairs or scooters... Did you get a prescription from your doctor that was covered by insurance or government disability? What was the out of pocket cost to you? What type of wheelchair or scooter do you have? I am looking for something that would be light or portable because my mom is my caretaker and she has physical limitations with her arm and back and won't be able to manage anything heavy or difficult to store or get in and out of the car. Thank you in advance. ~ Broken_Shell

Chrissy, I am sorry to hear that this is happening to you. Have you had heart studies done lately - an ECHO, EKG, stress test? These tests can be ordered by even your PCP and could help rule out a problem specifically with the heart and point the finger towards POTS. Hang in there and keep us posted. ~ Broken_Shell

Hi Earth Mother, Hang in there... sending hugs! I am also really struggling with an increase in and worsening of symptoms right now and have been waking up really bad in the mornings and not getting better per my usual schedule... I usually start to feel somewhat more stable around 3 pm. I am not sure what started my flare or how to stop it, but I feel for you. All day I am struggling and trying to survive, just praying and telling myself that I might feel better come the late afternoon and evening. This is such a wicked condition. I am sorry for what you are going through. Just know that you are not alone and have a lot of support. ~ Broken_Shell

Hi, How is it that I am sitting here thinking about how difficult waking up has gotten for me in the past couple of months, and then I come across this post? I used to feel ok getting up, but started going downhill once I was out of the bed, eating, and moving around. Now, I wake up in the morning and am hit with feeling extremely warm and flushed, getting the sweats, waves of nausea, stomach cramps, light-headed, etc. I feel these symptoms BEFORE I get out of the bed. It seems that I get them just from the act of waking up. Once I try to get out of the bed, I can barely manage to make it to the sink to splash some very cold water on my face and quickly get to the table where I can sit down. Is this what others are experiencing? Does anyone know what causes this? I never had it before - like I said I used to wake up ok, but now I am waking up with my body struggling before I even move out of the bed. Thank you in advance for your feedback! ~ Broken_Shell

Hi, I also was found to have vitamin D deficiency. I take prescription 50000 IU vitamin D. I took it every week for 6 weeks, had my labs checked again to see that it was in the normal range, and then was switched to the 50000 IU prescription twice a month. I was worried about reacting to it, but I haven't had any problems. ~ Broken_Shell

Hi GaryRN, I have a lot of problems with myofascial tightness, pain, and pressure in my neck, shoulders, and head that cause me to feel disoriented and woozy. I get dizzy and have sensations like I am falling or standing on a tipping platform. I tend to tighten up my back and neck even more by bracing my body against these sensations. Sorry you are experiencing a similar problem. Have you been evaluated by a physical therapist? I get chronic physical therapy which helps some, but I am still disabled by the symptoms on a daily basis. ~ Broken_Shell

Hi, My GI doctor suggested I try VSL #3 Probiotic for alternating constipation and increased bowel frequency and nausea. It is a really potent probiotic, so I am a little worried about how I will tolerate it. I believe that my GI problems are just a result of autonomic dysfunction, but at this point I feel like I should at least try the probiotic since the GI doctor doesn't have much else to offer besides Miralax, Immodium, and oral Zofran. Does anyone have any experience with VSL #3? Thank you, Broken_Shell

Hi Radha, I have a similar situation. After years of severe constipation, a year ago I began having these surges of increased bowel frequency, cramping, and nausea. I get extreme light-headedness, sweating, disorientation, etc. and other autonomic symptoms related to these episodes. I have had about 15 in the past year, lasting from 3 days to 3 weeks in length, and I have no idea what causes them. Like you, I do not have liquid stools, but pass large amounts of stool several times a day after eating that trigger in increase in my autonomic instability. I have tried taking a tiny dose of Immodium to slow down my GI motility, and this seems to help. I bought the liquid Immodium and only take 1/8 of a teaspoon, so it is a very tiny dose that slows things down without swinging me back to severe constipation. I also find that eating plain brown rice, apples, bananas, and egg whites during these surges helps to slow down motility as well. In addition to various autonomic symptoms, I experience increased blood sugar fluctuations and hypoglycemia episodes with these changes in bowel motility as well. I recently underwent a colonoscopy and endoscopy and a full GI work-up to evaluate this change in bowel habits, but everything so far as come back as normal. I wish you luck! ~ Broken_Shell

Hi All, Add me to the list. Before developing dysautonomia I sweat like a normal person in response to heat. I was very active in dance and when we did outdoor performances in 90 degree heat I was drenched. The loss of sweating was one of the first symptoms I noticed after the onset of my dysautonomia. I would get light-headed and sick feeling at dance or while in the sun, but would not sweat one drop while others were rolling with perspiration. Like many others have commented, the only type of sweating I do now is a "cold" type of sweating on my hands, feet, and occasionally my armpits, but it only happens when I am having increased autonomic symptoms and is never in response to heat. If I go into the heat, I just get unwell feeling but never sweat. I did have an abnormal sweat test at autonomic testing center. I know that both too much sweating and lack of sweating can occur with dysautnomia, and there can even be variations across the body (for example, someone can loose the ability to sweat on the left side of their body while retaining it on the right.) ~ Broken_Shell

Hi, Add me to the mix as well. My symptoms increase if I am in a warm room or even near heat, like a burner on in the kitchen. I can not tolerate heat or warmth in the air at all and have problems with the sun too. However, I can pick up dishes directly from the stove or wash my hands in water so hot that it turns my hands bright red and not even notice. On several occasions, my mom has seen me washing my hands and said, "aren't you burning yourself? your hands are turning bright red!" I noticed this began happening a few years ago once the autonomic dysfunction hit. Interesting that others have had similar experiences. ~ Broken_Shell

Hi Melissa, Sorry to hear you are struggling. I do whatever I can laying down when I am not well enough to be up. Read, suduko or crossword puzzles, study a foreign language, rent DVDs of a tv show that you've never seen before and watch from the beginning. Maybe you could do some gentle exercises laying down - maybe arm or leg lifts of some sort. Those are just a few ideas I can think of right now. Good luck starting therapy at the YMCA. I hope it makes a positive difference for you. Hang in there! ~ Broken_Shell

Hi Earth Mother, I don't have much to offer, but when I get bad surges it makes me feel slightly better to put ice packs on my wrists or the back of my neck. I understand exactly what you are talking about, and when I experience this besides keeping ice by me, I lay on the couch, pray, and say to myself "it's ok. you're going to be ok. your body just has to get this worked out." I know that doesn't help much, but I will keep you in my thoughts! A couple of other thoughts.... do you have a prescription like Klonopin, Ativan, or Valium to help reduce your symptoms during these surges? My neurologist suggested this, but I haven't tried it yet. It seems like it should help do something though. Maybe BenGay, Icy Hot, or heated wash cloths would help with the shoulder spasms? I also made posts before about kinesiotape. It is good to help muscle tightness, including the shoulders, and putting in on the soles of the feet or over the thoracic vertebrae (starting from the bottom and going up) is supposed to help reduce autonomic symptoms by providing counter-stimulation to the body. Sorry I can't offer more, but PM me if I can help further Hang in there! ~ Broken_Shell

Hi Rene, I am sorry to hear about your headaches. I also suffer from daily headaches. I agree that what you described sounds like a tension headache. Did it seem to start in relation to any of your medication changes though? Both the Zoloft and Atenolol can cause headaches as a side effect. You mentioned that Tylenol didn't help. Have you tried Advil? Otherwise, this is what helps me. It is kind of strange, but I put Icy Hot patches on my temples and head. If the pain seems to be coming from tension in your neck and shoulders, BenGay might be worth a try. What about a cool or warm compress on your head while laying down? Take care. I hope that you can find something that lessens your pain. ~ Broken_Shell

Hi, I am sorry that you had to stop the test early because of the numerous blood draws. I hear you about feeling and looking like a pin cushion. I don't know if this will help you or not, but it might be worth mentioning to your doctor... One thing my doctor did was write me a standing order for a blood draw for glucose, insulin, and C peptide. I would sit at the blood lab all day waiting for a hypoglycemic episode (I have several a day) and then they would draw the blood when I told them. I know this won't help if you are trying to rule out an insulinoma, but it might help if your doctor hasn't yet confirmed that your hypoglycemia is due to elevations in insulin. Just a thought. Get some rest and lots of fluids. I hope that you are feeling better soon. ~ Broken_Shell

Hi Mae, I know that if you search the archives there have been several threads on hormone and menstrual options. I had a hard time tolerating the high doses of hormones in birth control pills (I felt really jittery and like I could jump out of my skin), so right now I am in the process of finding something that will work well for me. For about 5 years I was on a combination of Vivelle Dot Patch and medroxyprogesterone pills. I just began a trial with the Combipatch a week ago. The only question is whether or not these low ?post-menopausal? hormone doses will be strong enough to suppress my cycle. My situation is also a little bit different because I was amenorrheic for a few years and just recently began having spontaneous cycles again. I know that several people on the forum have used Mirena (progestin IUD) or a continuous dosing birth control pill like Lybrel. The Nuva Ring might also be an option if you are looking for a lower hormone dose, as it gives hormone levels slightly lower than most birth control pills. Otherwise, there are a lot of birth control pills out there, and they would all ?shut down? your cycle. The trick is just finding one that agrees best with your body. Good luck and keep us posted when you try something new. ~ Broken_Shell

Hi, How elevated are the levels? As someone mentioned, this can be caused my certain medications or transient illnesses. Hopefully the GI doctor will be able due some more extensive work-up. How elevated were the values? I have had elevated pancreatic enzymes for the past several years (about 3X upper limit of normal) but nobody seems to know whether or not it means anything. I have had several mri's that show my pancreas is "enlarged", but I don't appear to have any symptoms of pancreatitis or pancreatic cancer, so it is just something that everyone likes to make note of, but beyond that it just falls in the "not sure what to do about this" category. Let us know how your appointment with the GI doctor goes. ~ Broken_Shell