mwise

Sorry to hear you aren't feeling well. Is your fiancee's family aware of your diagnosis? If they are, they should be empathic about how you are feeling and not force the issue. If they are adament about seeing you, make it a very short visit that you can tolerate such as an hour more or less if need be. Do you have any time during the day you feel better? Schedule the time with them at that time even if it is an hour or less. I would not hesitate to be sitting or laying down on the couch in their presence. I have had friends and family who were persist about visiting when I wasn't feeling well so I visited with them laying down on the couch. I actually told them to help them self to the refrigerator if they wanted something to drink or eat. I actually have planned visits knowing my best times of the day. Mornings and late afternoons are the best for me. You could always have carry out foods/drinks brought in for the short time. It sounds like you have a wonderful fiancee and I am sure he is willing to help out with his family. Good luck and will keep you all in my prayers.

I don't have Celiac because I did the process of limitation of food groups (You can do this free-Just google it). I was diagnosed with Gastroparesis and Diverticulitis and had a weight loss of 35 lbs and empathize with you. I had a consult with a Dietician who helped with finding the right diet for me a low fat/low fibr diet. Having the right diet, counting calories and Domperidone has eliminated symptoms I was having of bloating, nausea, pain and weakness when I ate. I am even gaining weight and enjoy eating again. The Internet is also a great place to get information on gluten free foods. Hope you feel better soon.

I am sorry to hear that you are having eating problems. I was malnurished with feeling full, bloated, nauseated and weak after eating. What has helped me to get calories since I was very malnurished was a consult with a Dietician who helped with a low fat/ low fiber diet because of me having Gastroparesis and Diverticulitis. I purchased a book to count calories (The Calorie King-Calorie Fat & Carbohydrate Counter). I also seen GI doctors and they placed me on Domperidone 20mg before meals and at bedtime because of the Gastroparesis. Having the right diet (I was not able to drink Ensure or Boost do to the high fat/fiber content) to follow, eating 6 small meals (3 of them liquid supplements) along with counting calories and Domperidone has helped eliminate the feelings of being full, bloated, nauseated and weak when eating. I am also gaining weight and enjoy eating again. Finding soft/pureed foods easy to swallow and digest such as soups, mashed potatoes, puddings, ice cream, custard, canned fruits, yogurt, apple sauces, cooked vegetables even baby foods can help with calories. Liquids I drink for calories include carnation instant breakfast (I mix it in 1-2% Milk), yogurt smoothies (Danimals by Dannon & Strawberry smoothies by Stoneyfield) check with a local grocery store near you, milkshakes, V-8 Fusion, Gatorade or power drinks, juices, and a pint of water mixture with a teaspoon of salt & a teaspoon of sugar. I keep the mixture in a water bottle and drink it every hour on the hour until it is gone. I try to get 1-2 liters of fluid a day into my body along with keeping the water bottle filled and drink during the night when I wake up to stay hydrated. It is important to stay hydrated with fluids especially fluids with calories to improve your energy level and prevent loss of vitamins & minerals. I also googled on the Internet a Gastroparesis Diet for Delayed Stomach Emptying (A Step Diet) by Frank Jackson, M.D. which is easy to follow. Hope this helps on the road to recovery for your malnutrion.

I am sorry to hear you are having pain and do hope it isn't your Gallbladder. I had my Gallbladder out in 2005 and never was right after that. I had 2 Gallbladder attacks 8 months later because they left stones (pea gravel in the bile duct) along with acute Pancreatitis from the attacks. I continued to have stomach problems of discomfort, bloating and fullness on going. Finally, I was diagnosed with Gastroparesis and Diverticulitis. I continued with pain everytime I ate something even after eating a few bites. Being followed by a GI doctor, we exhausted Reglan, Erthromycin and finally settled on Domperidone 20mg before meals and at bedtime along with me seeing a Dietician who recommended a low fat/low fiber diet with 6 small frequent meals. Between the Domperidone, the low fat/low fiber diet and small meals my pain and other symptoms were pretty much gone. I definitely know fatty/fiber foods were part of the cause because now & than I sneak a few foods with a high fat/fiber content and yes the discomfort of fullness, bloating and pain will return. As long as I stay the course I am fine. I do hope they find out what is causing your pain so you can be pain free soon. I also would like to know where you can get Alpha Lipoic Acid and/or any other supplements that may help .

What a great article. Thanks for sharing. Just signed up to receive their information. I add a teaspoon of salt to a 1/2 liter of water everyday which helps too. If I feel like I am getting dehydrated I add a teaspoon of sugar with a teaspoon of salt to a pint of water. It does work.

I am a newbie with Dysautonomia and appreciate this forum's wonderful support. I have been taking Midodrine 5mg 3 times a day for the past 2 weeks along with Mestinon 60mg 3 times a day. I have been feeling better with the Midodrine and now can take short walks around the house and stand up without passing out. Before I was predominantly chair, couch and bed bound. I was using a wheel chair and Rollator to get around. Now I can get around the house on my own. I do experience the goose bumps and itchy head at times, but no other side effects. I am hoping I am finally getting some quality of life back. Has anyone on Midodrine built up a tolerance and had to have their dose increased? How long has anyone been on Midodrine (rest of life)? Has anyone ever got off Midodrine once they felt better? I am trying to get some idea of what to expect with Dysautonomia and treatment modalities. I am open to homeopathetic ideas too. I will be seeing my Neurologist at the Cleveland Clinic on Feb. 4th and want to share anything new out there for me to try.

You are not alone. We are all here for you. Wanted to know how you are doing with the Midodrine? I was diagnosed in Dec. 2010 and started on Midodrine 5mg 3 times a day. I have been taking it now for the past 2 weeks. I also take 60mg of Mestinon 3 times a day. Was on Florinef, but had bad side effects and went off it. The Midodrine appears to be working as I can stand up with out feeling like I would pass out and take short walks around the house. Before, I was predominantly couch, chair, or bed bound. I do experience goose bumps and my head itches at times, but no other side effects.

Sorry to hear about the lines. I wear Jobst compression stockings-thigh high and haven't had any bunching or lines. I am very satisfied with them. They do help in keeping my bp up. I am to wear them only when up during the day and take them off in the evening. No sleeping in them. They cost around $30.00 and are not covered by insurance. There are some compression stockings covered by insurance. I would also check with the person who measured you. They may have measured wrong. It is good to check back with the doctor too. Good luck with you in being able to wear them.

Hi Lieze, <Sorry to hear you are having trouble with eating and fear of going through testing. Having problems with loss of appetite similar to you, a 35lb weight loss in the past and finally passing out, the allergy testing and finally being diagnosised with dysautomonia by the Cleveland Clinic (I follow up with Drs. Shields & Chowdhury, Neurologists at the Neuromuscular Center/Neurological Institute along with their GI physicians) helped ease my mind and began a healing process both mentally and physically for me along with belonging to this Forum. The doctors at Cleveland Clinic are very empathic and knowledgeable. I also saw a dietician at Cleveland Clinic who recommended a low fat/low fiber diet with 6 small meals daily and counting calories (I recommend The Calorie King-Calorie Fat & Carboydrate Counter Book) do to my Gastroparesis and diverticulitus. I also take Domperidone 20mg before meals & at bedtime. Making the dietary changes, reading labels, counting calories and Domperidone, I began to eat foods and drink supplements that didn"t hurt my stomach or make me nauseated or weaker and have gained 2lbs in a 3 week period. I am actually enjoying eating again. <To give you some calories if you can't tolerate foods, I drink Yogurt Smoothies (230 calories) by Stonyfield and Danimal Smoothies (70 calories) by Dannon (Both can be purchased at Giant Eagle or google their websites to find out the location of a store near you) because I can't tolerate Ensure or Boost do to the high fat/high fiber content. Carnation Instant Breakfast is also good for calories. I also have low fat vanilla ice cream or low fat yogurt and make my own smoothies with 1-2% milk and fresh fruits. I also drink lots of liquids (2-3 liters per day) to stay hydrated-sport drinks G2 (Gatorade) or a water mixture with 1 tsp of salt & 1 tsp of sugar to a pint of water to prevent dehyration. I have also been fortunate to find foods that are low fat/low fiber that I enjoy. <Good luck in what ever you decide to do as we are all here to support you.

I am so sorry to hear tearose that they would challenge your spirituality. Shame on the doctors trying to play God, when we all know He is the supreme being. Please keep sharing your spirituality as I know since I was diagnosised with dysautonomia, it has been my faith and prayer that has sustained me. Will keep you in my prayers.

I would suggest you find someone who specializes in dysautonomia. My family physician is a relative and he definitely recommended me to follow with someone who specializes in the field. I am driven (I live almost 2 hours away) to Cleveland Clinic to follow up with Neurologists who specialize in this area. I found them empathic and very knowledgeable. If a problem arises, they call me back within 24 hours. They also send me reports of my visits with them for my records and also send a copy to my family physician to keep him updated. Good luck finding the right physician.

I recently saw a dietician to discuss a possible feeding tube d/t to a steady weight loss over 10 months of 35 lbs, lack of appetite and difficulty eating foods, stomach hurting and feeling bloated with the dysautonomia. I also have Gastroparesis and being treated with Domperidone. My lab work has been pretty much normal. She suggested a Gastroparesis diet of low fat/ low fiber with 6 small meals daily including counting calories. It appears to be working with my weight stabilizing, but I am open to any suggestions to help improve my intake of foods and calories.