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RubyTuesday, The thigh highs I have come with the band attached. They seem to stay up quite well. I really haven't had much problems with them constricting and cutting off circulation.

I wear the thigh high support hose made by Jobst and Allegro. I got them on-line at Bright Life Direct who are very helpful with fittings and compression. Their website is: www.brightlifedirect.com. I wear them everyday. I have the 30-40mmhg compression. They can be difficult to get on & off, but the support of increasing my blood pressure is worth the work. They have an elastic/latex band that holds them up. I wore them through the summer with capris and flip flops. I have the open toe style. They really did not make me that hot from wearing them. They do keep my legs warm now that the weather is cooler. Good luck.

Hi Ginger, I work full time outside of the home. I have my good days and bad days too. When I first went back to work, it was a real adjustment. I felt so safe at home and had a routine, but when I went back to work, I was off with my medications, drinking fluids and eating. I like you had a few good days than crashed again. I decided right than and there I was going to make it work. With the help of my co-workers, I developed a work routine that I have been following religiously for the past 10 months I have been back to work. It helps me get through those bad days. I take extra rest periods, keep my appts. short and basically lay down with a laptop on my chest to work. I have flexibility with my job to work at home. On my worst days, I do stay at home and work. PM if you want to talk.

Hi Jacque, What time is the latest you take your Midodrine? I take Midodrine 7.5mg 3xday & prn even if I am sitting or laying down and extra doses late in the evening if I am going to be out. I hydrate with all kinds of fluids including caffiene in the evening along with wearing suppport stockings 30-40mmhg. I definitely salt everything along with salt tablets if I need. You may need to take a 4th dose which alot on this forum do. You also may want to add B Vitamins which help with fatigue and energy. I hope you start feeling better again soon.

I think it is indirectly related especially with so many of us having GI problems-relates to nutrition in our bodies. When I became sick, crashed and was diagnosed with Dysautonomia, I had significant hair loss and had my hair cut short. My Beautician I had been going to for years took one look and feel to my hair and said it was brittle, dry and had a glob in her hand,

Angelika said it well about FMLA. I don't know what state you work in, but if you live in Ohio-it is an at-will-state meaning they can let you go any time for any thing. Did you receive an Employee Handbook upon hire? If you signed that you read it, it may have contained information on the Introductory Period which is usually the 1st 90 Days of employment at which time you could be terminated without cause and like they stated that it wasn't working out. The Handbook usually contains information on FMLA too. I would also apply for unemployment even if you have exhausted 6 months. With all the extensions that the government has approved, you may still be eligible. I agree with others, you should be looking into getting disability. Good luck and I will keep you in my prayers.

Go to www.brightlifedirect.com they have alot of brands to choose from including their own-Allegro. They are probably the most reasonable and very helpful with finding the right type of hose for you. I wear thigh high 30-40mmhg hose-Allegro & Jobst brands. The Jobst are harder to get on and more expensive than the Allegro brand. My insurance doesn't cover support hose so I have to purchase them out-of-pocket. Check with your insurance to see if they cover support hose. If they do, you will need to get a prescription from your doctor to get them covered. Good luck.

I ran low also almost non-existent back in 2008.. I had to take 100,000u 3xweek back than and was monitored close til I was decreased and now only take 50,000u a week. I take extra B&C and am thinking of increasing B5s. Vitamins have really made a difference in my health too.

I agree with Mack's Mom. Sounds like your gut is slowing down. You may want to gut rest meaning to just drink yogurt smoothies. You can buy them pre-mixed in bottles in the dairy section or make your own with fresh or frozen fruits. Yoplait also has frozen packets that you can make up using skin milk. Carnation Instant Breakfast is another good source to drink. The key thing is to stay hydrated and to get some calories, you may have to do smoothies for awhile. When I was really sick and couldn't eat-meaning I would take a bite double over in pain along with being nauseated-I had to qut eating and went to liquids. I did this for about 2-3 weeks and than gradually added little bites of food in-between. I was also started on Domperidone. Reglan & Erythromycin didn't work for me. The Domperidone helped with nausea & motility. Little by little, I was able with the Domperidone to take in small bites of food. I can't eat all foods but did find foods to eat by process of elimination. I do alot of low fat/fat free foods along with low fiber. As the Dietician at Cleveland Clinic said, "You need to make this a full time job to find the right foods for you to eat." She was right and fortunately I have. I also found I can't cheat with food, because I pay dearly if I do. If you can't do dairy-I know coconut or soy milk products are good sources to substitute the skin milk. You may have to get creative. If you have a good health food store near by work with them. There are alot of on-line stores that have Gluten and wheat free foods. I will pray that things will settle down for you.

I either sit on a high back bar type chair or use my rollator walker. I sit either at the dining room table or counter to prepare things. I don't turn the stove on until the last minute. I try like others do to use the microwave, oven or slow cooker. I also freeze small packs of things. I am blessed too that my husband cooks. Sometimes it is just carry outs. Thank you for the post cause it gave me a few more ideas to use.

Have a Blessed and Happy Thanksgiving! Hugs & Love to all of you for helping me deal with this disease.

Thank you Rama! It says it all and really is useful for anyone with the disease giving them a variety of treatments to find what works for them. I may have to add a few more meds which may help.

I too urinate frequently from the Midodrine and drinking lots of fluids. I definitely know where all the bathrooms are when I am out. Before I had been diagnosed with Dysautonomia, I never had a problem and could hold my urine for hours. I would give anything for a couple of hours without going to the bathroom. Lol guess that will never happen.

I am sooo sorry people are sooo judgemental of what we have and just don't understand or should I say believe us. I have had people say to me that you are faking your illness cause you look sooo good. I cringe because they only see what they want to see. They don't see the number of times I drop to the floor in the morning and night, crawl to the bathroom, kitchen, etc...use my wheelchair and/or rollator walker, feel my head full/buzzing, heart racing and bounding out of my chest, stomach pain, constipation and/or diarrhea and just feel like I am dying. I just pray for them that they don't get this, but wish sometimes they wore my shoes to see what it is like to have Dysautonomia. Keep your chin up and know there are several on this forum that know, love and understand what you are going through.

Congratulations and as others have said, "Enjoy." Take each day as it comes. When I have a good day, I make the best of it. When I have a bad day, I make the most of that too. Stay positive because I know there are others with our disease in remission and enjoying life. As for us who are still symptomatic, hugs and love to you all. We will beat this and one day we will all be cured.

I continue to get my hair bleached and dyed at a Salon that I have been going too for years with the same beautician. I have not experienced any reactions from the chemicals. I am a brunette, but have my hair dyed blonde at present. I have had highlights and lowlights since I was diagnosed with no reactions. I would check with a reputable salon in your area to see what type of hair dye products they use and if they have had any clients with your condition. Good luck.

Lenna, I am going to look into this as what a cost savings this would be for me. Thank you.

As far as I know, you can't get Domperidone in the US anymore. The FDA took it off the market. My GI doctors at Cleveland Clinic send/fax a prescription to Clayman's Pharmacy in Canada for the Domperidone. It is costing me $180 out of pocket for a months supply. Being able to eat and not nauseated out weighs the cost.

Hi Songcanary, So sorry to hear you are having problems. Did you taper off the Doxipen or cold turkey? You may need to start back on at a lower dose or some type of adjustment. I agree with Christy & you, "If it ain't broke, don't fix it." PM or call me to catch up with what is going on with you.

Yes for me too and especially when I am tired too.

A great big hug goes out to you. I am a mother of identical twin daughters that are teenagers now. I know how stressful having mutilples can be which can be contributing to making your symptoms worse. I am sorry to hear the medications you have taken previously haven't worked for you. I know that it has been trial and error for medications, diet and treatment modalities for many of us here. You really do need to get in to see someone who truly specializes in Dysautonomia. I live in Ohio and several here recommend Dr. Blair Grubb in Toledo. I follow at Cleveland Clinic and have been satisfied with Dr. Shields. Have you tried any homeopathic treatments-supplements like B vitamins, CoQ10,etc...change in diet such as gluten or dairy free or low carb? I went to a good health food store and worked with the owner to help me find good supplements to take. This may be less traumatic on your system. You are welcome to PM if you just want to talk. I can share some multiple tips and senior wisdom

Hi RubyTuesday, I am sorry to hear that they would stop the Mestinon. I don't know why they don't want to try Zofran or something similar. I get Domperidone from Canada that has helped with motility and nausea. I take Domperidone 20mg before meals & at bedtime. It has really helped with the digestion of foods. I used to have food either stay in my stomach or take over 2-3 hours to digest it. I would be miserable. I would definitely try the candy bars. Anything that you like to help you with calories. I eat alot of low fat/fat free items such as ice cream, yogurt & cottage cheese. There are also unsalted crackers and pretzels. I saw them at a Super Walmart. Try sitting when you make your smoothies. I sit to cook on my Rollator. I do alot of things sitting. Gotta run. I will share more later.

Good morning, I don't know what type of diet you are following, but maybe a change in foods will also help. Because of the Gastroparesis, I eat a low/fat free diet and low fiber diet d/t diverticulitis. I also drink yogurt smoothies in-between for calories. I do small frequent meals. Alot of members here avoid gluten, wheat and dairy products. Some do a Paleo Diet and supplements too. I do know when I eat too much carbs, it affects my energy level. I will share that when I was first diagnosed, I was barely eating almost nothing. I was actually begging for a feeding tube. I would take one bite of any type of food and I would double over in severe pain and oh the weakness. It was finding the right diet, medications and treatments that I have slowly come back to life again. I initially had started on Mestinon 30mg 3xday which was increased to 60mg 3xday along with going from Midodrine 2.5mg 3xday to me being on 7.5mg 3xday & as needed. I have found it has been trial and error with medications, diet and treatments. I hope you get relief soon.

Hi RubyTuesday, I take both Mestinon and Midodrine too. I take Mestinon 60mg 3xday with food. I do know that Mestinon can cause cramping, diarrhea & nausea initially, but the symptoms/side effects do subside. I was fortunate not to have side effects with taking it. I am on Midodrine 7.5mg 3xday & as Needed-never had any nausea with it. I have Gastroparesis and take Domperidone 20mg 3xday before meals & also at bedtime. I also take Prilosec 40mg daily. I agree with Byre to get you something for nausea.

Enjoy eating while you can. I wax n wane with wanting to eat to not eating. My weight sits around 130 after losing over 30+lbs in 10 months prior to being diagnosed. I eat alot (6+) of small meals low fat/fat free with yogurt smoothies in-between. I can't drink ensure or boost due to the fat content, but buy yogurt smoothies and make my own smoothies using low-fat yogurt, skin milk & fresh fruits. I have even substituted Gator Aide or power drinks for skin milk in the smoothies. Taste pretty delicious. I just wish we could all fix our digestive systems. It has been awhile since I ate fast foods. Lol I am eating healthier than ever.