mwise

Sugartwin said it well. That is my dysautonomia diagnosis. I take Alpha Lipoic Acid 500mg qd for nerve health. I am assuming that is what Sallysblooms is taking a similar form-brand of Lipoic Acid. I got mine at the local health food store. It is recommended as an alternative treatment for Autonomic Neuropathy along with Florinef, Mestinon and/or Midodrine. Google Mayo clinic on Autonomic Neuropathy-gives a good explanation:rolleyes:

I agree with Mack's Mom with the low fat/low fiber diet. I am on that for a diagnosis of Gastroparesis and Diverticulitis. I also have GERD. If you could tolerate high fiber foods, this will help with getting your bowels moving again. My suggestions are to see a GI specialist(s) who will refer you to a Dietician to help find the right caloric and fluid intake. My GI doctors are at Cleveland Clinic. They have me on Domperidone 20mg before meals & at bedtime (I get it from Canada) for motility & nausea. They also had me taking Miralax 1 capful 2-3 xday along with a Ducolax suppository for constipation. They referred me to a Dietician who put me on a low fiber/low fat diet along with drinking 2-3 liters of fluids a day and night. She gave me a list of foods-similar to Mack's Mom's suggestions that I am able to eat. I also purchased the book Calorie Fat & Carbohydrate Counter by the Calorie King. Great little book especially for eating out. He has a web-site: www.calorieking.com My Neurologist has me on Mestinon, which he says also helps with motility. Between the Domperidone & Mestinon, it really is helping with motility and took away my nausea. No more bloating and full feeling. I do take a probiotic 1xday-Advantage and have had no problems with it. I buy it on-line. It took about 2 weeks with the Miralax & Ducolax suppository getting my bowels working with 2-3 bowel movements of soft stool a day. I still go 2-3xday of soft stool with even the urge to go. No more bearing down and feeling like I was going to pass out from going. I am only using the Miralax 1xmth without the suppository. The low fat/low fiber diet is great. I eat small meals of a variety of foods. Giant Eagle, Wal Mart, Trader Joes to name a few have allot of low (reduced) fat and fat free products. Read the labels. The Counter book helps when going out to eat. I just recently took my daughters (identical twins) for their 16th birthday to Red Lobster. Resturants can be very accommodating if you just ask. I brought my own light "I can't believe it's butter" and fat free sour cream to the resturant. They melted my butter so I could have it for my Lobster tail, substituted saltine crackers for their biscuits and used my butter & sour cream for the baked potato along with steamed broccoli. Their Lobster & Shrimp was lowest in fat content. It was great being out eating again. Stonyfield Products are organic. They have great smoothies and yogurt products. This helped me with getting 5 lbs on when I wasn't able to eat. Avoid Ensure or Boost-the Dietician shared too much high fat content. Danimals Smoothies by Dannon are also good for calories. I do drink 1% or fat free milk. Cream of wheat cereal was recommended by the Dietician along with making Carnation Instant Breakfast inbetween meals. I also eat low fat/fat free puddings and ice cream. Steamed vegetables are easy to digest. Apple/fruit sauces and canned fruits are also fat free. I am lucky I have no problems with carbs LOL. Good Luck and feel free to email me if you want specifics with foods being low fat/fat free and fluids.

Sorry about your fall and the scare of your daughter. I am with the others, don't ignore anything. Even if you feel sore and think you only broke a toe, you should get checked out and have some routine x-rays done. I have known persons who have walked around for weeks with broken legs, arms and/or ribs from falls before they were treated which caused more problems in the long run. I will share, when I passed out for about a minute, I fell, hit the floor and bruised my side. I was in pain along with swelling on the side which I went immediately to see my chiroprator who had to put my back & hip into place. Good luck:unsure:

Hi all, Here is my take with GI doctors-I follow with the doctors at Cleveland Clinic. I was diagnosed with Gastroparesis from an Endoscopy and Diverticulitis from a Colonoscopy. I also had a Gastric Emptying Study with findings of 56 minutes and the abnormal is 60 minutes & above. I was also taking Domperidone to help with motility & nausea that the GI doctors felt my Gastric Emptying Study would have been abnormal if I hadn't been taking the Domperidone. My Neurologist has me on Mestinon, which he said also helps with motility and bowel movements. I was constipated and only moving my bowels once a week with taking over an hour to move them from hard stools to diarrhea. This may sound gory, but I would even put a rubber glove on and digitally remove the stool because it was so hard and bearing down would almost cause me to pass out. Once done, I would have to lay down for 2-3 hours as I was so weak from moving them. The GI doctors recommended Miralax twice a day along with a Ducolax suppository. They also had me follow up with a Dietician to help find the right caloric & fluid intake. The Dietician recommended a low fat and low fiber diet because of my Gastroparesis and Diverticulitis. High fiber would have been better because those foods could help with bowel movements. She encouraged me to drink over 2-3 liters of fluids a day along with hydration during the night. It took me about 2 weeks til my bowels started working with going 2-3 times a day having soft bowel movements. I continue to go 2-3 times in a day, but I no longer use the Ducolax suppository and Miralax only 1xmonth. I don't even have to bear down. I actually have the urge to go. I am eating small meals of low fat and low fiber along with staying well hydrated which I feel also helped in getting my bowels regulated again. I feel the Mestinon and Domperidone help too. Good luck

Hi Dani, I take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I don't get the adrenaline surges, but do have the itchy head, goose bumps, frequent urination & parathesia. Now & than I also get a pounding heart for about 30-45 seconds. I also get tired when it starts wearing off. I am usually going to bed and keep water near the bed to hydrate during the night. The benefits of being able to work again and do things around the house out way the side effects. Without the Midodrine, I was pretty much bed, couch and chair bound. You may just need to adjust the dosage or like me live with the side effects. As far as anxiety, I think it goes with our disease process and the life changes we have experienced from it that makes us anxious. Good luck:)

Welcome Mason's Dad, I am sending hugs to you, your son and family. This is the best forum for information and love. I am going to add to the mix of things that I would get a second opinion with an Endocrinologist. I will also suggest seeing a Gastroenterologist and a Dietician to help with the caloric intake. Since he does like milk, I would recommend Stoneyfield Products-yogurt smoothies and their yogurt products to help with calories. I know several young persons including my own teenage daughters who like the taste of the yogurt smoothies along with their other yogurt products. I would also look into to seeing someone who specializes in homeopathic treatments. They will do lab tests and recommend natural supplements which could boost your son's energy level. For instance, vitamins B & D help with energy and C for healing. Reinforcing what others have shared is continue to do lots of research along with educating the physicians and staying on them about how to treat your son's disease process.

Hi Dani, Try to hang in there and look on the positive side. Like others have shared It could turn out to be negative and you don't have lupus or if positive, it could be the cause of all your symptoms and they could treat it and get rid of them with you have some normalcy in your life again. Good luck and will keep you in my prayers.

Google Mayo Clinic as it gives good explanations as stated below about the tests & more. Here are some of the autonomic tests you may want to have done: § Valsalva maneuver. This noninvasive test checks the functioning of your autonomic nervous system by analyzing your heart rate and blood pressure after several cycles of a type of deep breathing: You take a deep breath and then force the air out through your lips, as if you were trying to blow up a stiff balloon. Tilt-table test. This test monitors how your blood pressure and heart rate respond to changes in posture and position, simulating what occurs when you stand up after lying down. You lie flat on a table, which is then tilted to raise the upper part of your body. Normally, your body compensates for the drop in blood pressure that occurs when you stand up by narrowing your blood vessels and increasing your heart rate. This response may be slowed or abnormal if you have autonomic neuropathy. Gastrointestinal tests. Gastric-emptying tests are the most common tests to check for slowed movement of food through your system, delayed emptying of the stomach and other abnormalities. The testing can take various forms. One test may measure the rate at which food leaves your stomach, while another checks how well your stomach muscles relax after you eat. These tests are usually done by a doctor who specializes in digestive disorders (gastroenterologist). Quantitative sudomotor axon reflex test (QSART). This test evaluates how the nerves that regulate your sweat glands respond to stimulation. A small electrical current passes through four capsules placed on your forearm, foot and leg, while a computer analyzes how your nerves and sweat glands react. You may feel warmth or a tingling sensation during the test. Thermoregulatory sweat test. During this test, you're coated with a powder that changes color when you sweat. You then enter a chamber with slowly increasing temperature, which will eventually make you perspire. Digital photos document the results. Your sweat pattern may help confirm a diagnosis of autonomic neuropathy or other causes for decreased or increased sweating. Urinalysis and bladder function (urodynamic) tests. If you have bladder or urinary symptoms, a series of urine tests can evaluate bladder function. Ultrasound. If you have bladder symptoms, your doctor may do an ultrasound, in which high-frequency sound waves create an image of the bladder and other parts of the urinary tract. I have had several of tests: Tilt Table, QSART, Gastric Emptying Study, Ultrasound along with lots of blood work tests. Good Luck:)

Serena, I am sooo sorry to hear how your son was treated by the Youth Group and Minister. I also believe when one door closes another will open. You will find a loving church family. I also agree with Dixzeland that your son may want to use a Wheel chair or a Rollator (walker with a seat) walker. I will keep you all in my prayers.

I wear Jobst support thigh high stockings and they aren't bad to wear. I can tell the difference when I don't have them on. I feel they have been beneficial in helping with my blood pressure. I encourage you to give them a try.

Aunie, What gastric test are you having-Gastric Emptying Study? You may want to try some Stoneyfield yogurt smoothies and yogurt products. They are organic and will help you with calories. They are very easy on the gut for digestion and low fat too. Breeze drinks, V8 Fusion and almost any fruit drinks help with calories. Just beware of the Carb contents. You may want to make your own smoothies with fruits and fluids you can tolerate. Just keep trying with small bites of food and process of elimination til your gut heals.

Hi Aunie, Sorry to hear you are having eating problems. I had difficulty eating foods causing similar symptoms. I was also diagnosed with Gastroparesis and Diverticulitis. I saw GI doctors who made a referral to a Dietician who helped me find the right dietary/caloric intake along with prescribing Domperidone (I get the medication from Canada) to help with digestion, nausea and motility. The Dietician recommended a low fat, low fiber diet. This has made a huge difference along with the medication in me being able to actually eat again. I have even gained around 5 lbs. I would suggest you may want to see a GI doctor if you haven't already done so and also see a Dietician. I am in agreement with Alicia that organic foods are so much better to eat. I wish I had more suggestions to share. Good luck:)

A great big hug to both of you and praying that Liz continues on the road of recovery.

Any suggestions for a runny nose constantly? I am open to OTC medication suggestions.

Sending hugs to all of you. Issie said it well. Volunteer work is wonderful and being a foster parent especially to older children can be a blessing to all involved. There is always sooo much love to give and get in return. Dani-God has blessed you and I know it can be stressful and exhausting with a 1 yr old. Just enjoy each day with her. Set little goals to do things age appropriate for her. She will love you unconditionally no matter what. I have sophmore twin daughters that are active in all types of sports and extracuricular activities besides school programs. I pick and choose what I can attend based on how I feel. Some days i attend with a friend or family member using a wheel chair or if I am feeling able to walk use my rollator (seat) walker. You would be surprised at how many parents and school officials are very accommodating and helpful. I have even had friends and family video record or use a web cam so I can watch their activities and programs. Technology does make things so much easier today. It is well worth the investment. Dani-Just take each day as it comes and enjoy that time with her. She will grow up fast.

Hi Sandy, Glad you will have follow-up with Dr. Grubb. Taking in almost a liter of IV fluid a day, your bp should be going up. I think you may be right about the absorption of fluid problems now that you have been diagnosed with Celiac disease. Was it a GI doctor that made the diagnosis? Did they recommend or refer you to a dietician? I would suggest to follow-up with a GI doctor and a dietician. It made the difference for me with follow-up by both to finding me the right dietary/caloric intake to help elleviate my syncope and control my Gastroparesis symptoms. Good luck and keep us updated on the outcome.

Welcome to the best forum group that helps keep me sane. LOL I was diagnosised at age 55 in December 2010, but feel have had symptoms since 2005 after I had my gall bladder out wasn't ever the same again. Everyone here has soooo much to give whether it be education, support and most of all love. I have learned so much about my symptoms and illness, what works and don't work, received a lot of support and most of all the heart felt love from the forum members. Kuddos to all the forum members. We have all felt like you have and still do on-going. When I was first diagnosed, I was couch, chair & bed bound. I would crawl to the bathroom because when I would stand my pressure would drop to where I would be ready to pass out or pass out. I would be in the bowels of dispair because I pretty much couldn't walk or do anything I used to do including working as a nurse. It was a lot of prayers, guidance and support from the forum, family, close friends and good doctors that listened, were empathic and tried different medications (now on Mestinon and Midodrine) that got me to be able to walk again and have some normalcy in my life. I set little goals whether I am having a good or bad day and make every attempt to accomplish them each day. I am even back to work once again. Igail-Know we are all here for you and a great big welcom hug to you.

Hi Victoria, Glad your appt. got moved up by the Endocrinologist. That is a very good thing. I am praying he/she will do those tests quickly. I am sorry you had a bad experience with Mayo. I do believe if you follow-up with any of the Ohio doctors, you will be very pleased & satisfied. I did have to stop taking Florinef, when I was on it (I had very bad side effects so wasn't on it for very long) for my tests. Good luck and keeping you in my prayers that you get the answers you derserve.

Kudos to Julie. I agree and keep trying by setting little goals everyday. I set little goals and cross them off when I accomplish them whether a good or bad day. It just makes me feel better knowing I have some normalcy in my life. I plan my shopping trips. I make a list, go with someone (drt, friend or other family member) during slow hours and pick stores I am familiar with their layout. I have even called stores to ask it they have chairs available and the location of a bathroom if they have one for public use. We actually try to make it fun to see who gets done 1st finding the items I need. I also go to stores like Wal-Mart, Giant Eagle, etc...that have motorized carts to use. Don't be afraid to ask for a carry-out. You would be surprised at how many stores will get someone to help carry out your groceries. I also do on-line shopping too. The most important thing to remember is you can do it. Don't stop trying!

Lieze, Here are the doctors & dietician I have seen at Cleveland Clinic-Cleveland, Ohio: Dr. Robert Shields, Jr, M.D. Co-Director, Center of Syncope & Autonomic Disorders Neuromuscular & Neurological Institute (216) 444-0855 or 1-800-223-2273 ext. 40855 Dr. Kyrsten Fairbanks, M.D. Gastroenterology/Hepatology (216) 444-6536 or 1-800-223-2273 ext. 46536 Office: (216) 444-2708 Beth Czerwony, RD (216) 444-3046

Lieze, I am sooo sorry to hear your nurse therapist isn't supportive. It sounds like you need a change to a professional (licensed) counselor (Psychiatrist) that specializes in eating disorders and emotions. He/She could maybe help you work through your feelings along with prescribing the right anti-anxiety medication. I think you also need to see a Dietician to help you find the right dietary/caloric intake for you. I see wonderful GI doctors down at the Cleveland Clinic in Cleveland, Ohio. I would highly recommend you come to the Cleveland Clinic and see them along with Beth Czerwony-Dietician there. She helped me find the right diet to meet my dietary/caloric intake which helped stabilize my weight along with gaining weight. The GI doctors got me on Domperidone to help with nausea and motility for my Gastroparesis. I am enjoying eating again. Good luck.

Hi Victoria, I am sorry your Endocrinologist is reacting slow along with your Internist about redoing the tests. Have you thought about going back to Mayo Clinic-Minn I am guessing? Things have changed since 2002 and maybe you would get the diagnosis you need now. I live in Ohio and would highly recommend Dr. Blair Grubb at the Toledo University Hospital Medical Center in Toledo, Ohio-POTS specialty and/or Cleveland Clinic-Cleveland, Ohio-Dr. Robert Shields-Co-Director of Autonomic/Syncope Disorders (Neurological Institute). They also have wonderful GI & Endo doctors. I have had wonderful care under Dr. Shields and the GI doctors at Cleveland Clinic. They are all very empathic and supportive. You really do need to have those tests redone.

Hi Sandy, My syncope episodes are similar to what your experiencing. I needed some medications adjusted & luckily haven't had any lately only slight palpitations. You taking IV hydration, Midodrine and BP still low means something appears to be not working. How long have you been on 10mg of Midodrine 3xday? Maybe a bump up would help or adding Mestinon or Florinef? How often do you take IV hydration & how much 1,000 cc? Just some thoughts. Hope you feel better soon.

I agree with Chaos and my Neurologist that says the 24 hour sodium urine test is more accurate. You try to collect as much you can in a 24 hour period. The serum sodium only detects sodium level in the blood and can fluctuate constantly d/t how much food & fluid you take in daily and how you are feeling that day. I take Theratabs, drink salt water and salt everything too to help with my sodium intake. Good luck and I say go for the 24 hour urine.

I alternate between caffiene flavored coffee-use a Kerig and tea. My Endocrinologist suggested at least a cup in the morning and if I feel sluggish in the afternoon, another cup. I do feel better with caffiene than without it. It definitely helps with keeping my pressure up. I say stay with caffiene beverages.