mwise

I am taking Mestinon 60mg 3xday (9am-3pm-9pm) along with Midodrine 7.5mg 3xday (7am-12pm-5pm). I tried Florinef 1st but didn't work and was put on the Mestinon. I didn't have any side effects and it did help alittle with walking. It wasn't until I was put on Midodrine 5mg now 7.5mg that keeps me walking. I do have the side effects with Midodrine, but the benefits of being able to walk and do little things out way the side effects. I am seriously thinking of weaning off or completely stopping the Mestinon as I don't feel it is doing much of anything for me. Your thoughts, suggestions or ideas?

Hi Jenwic, It goes for generic brands too with different bio-availability. I was taking the Mylan brand of Midodrine and was switched to the Global brand of Midodrine and boy did I see the difference between the two Generic brands. The Mylan was stronger. I actually had to up the dose of the Global brand temporalily until I was put back on the Mylan brand. So even Generic brands vary between each other. Find and keep what works best for you. :)Good luck

I had a tilt table test & QSART done by Neurologists at Cleveland Clinic. That is how they came up with my diagnoses. I do know for a tilt table test-your primary, cardiologist or just about any physician can order the test. Really any doctor who has knowledge of Dysautonomia Lol should be able to order autonomic testing for you. Good luck and keep us posted

Thank God that is such good news for you all. Glad she is doing fine on her new regime. Will keep you all in my prayers.

Hi Dani, I am like Lizababy. I just take my midodrine even if I am laying down, taking a nap or what ever. I take it on a 7am-12pm & 5pm schedule and adjust the times depending on what I am doing. I even take a 4th dose if I am going to be up or out later in the evening. I think you have to find what ever works best for you. It is such an individual drug. LOL

I am in agreement with the others. Don't let the nurse dictate your visits. Even if you are feeling good, don't overlook your GI concern. I see my Neurologist every 3 months. Last visit I was feeling great. I just saw him today and have been being symptomatic for the past few weeks. He compared notes and we are doing some medication adjustments, going to a higher mmhg support hose, looking into cooling vests and increasing fluids because of the weather change. Follow-up visits can help with monitoring your progress, etc... I say keep the visit

1. Having this forum of Family to help me not only physically but mentally cope with my disease. 2. Knowing I have Dysautonomia. 3. Finding what works best for me from my special doctors and dietician at Cleveland Clinic along with this forum to treat my symptoms. (See info listed) 4. God and Prayer. 5. Family and friends that accept my limitations and help me daily at home and work. 6. Taking each day as it comes. 7. Never giving up on finding a cure. 8. Loving my self.

Hi! I have been on Mestinon 60mg 3xday (9am-3pm-9pm) since February 2011. I was diagnosed in December 2010 with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). I could not take Florinef so my Neurologist @ Cleveland Clinic Dr. Shields prescribed Mestinon. Prior to Mestinon, I was bed and chair bound. After I was started on Mestinon, I was able to walk short distances without feeling like I was going to pass out. I did feel stronger and experienced less weakness. It also helped with motility for my Gastroparesis along with taking Domperidone. I really had no side effects with the Mestinon. About 2 weeks later, Dr. Shields added Midodrine 5mg 3xday and boy did I see significant improvement with being able to do things again. I of course experience side effects with the Midodrine, but the benefits out weigh the side effects. I attribute my improvement with Dysautonomia to Mestinon, Midodrine & Domperidone. I consider these 3 medications my life savers along with everything else I am doing to control the symptoms of Dysautonomia which includes loving this forum for all the knowledge, support & hope it provides. Thank you all

Welcome Ollie! A great big hug goes out to you. This is the best forum for knowledge, support and yes hope too! There is no better place than here to ask questions and yes vent your feelings when you are having those bad days. BellaMia said it well-you can count on all of us here! We are more than friends-Family we are and in this together. I hope your new GI doctor you are going to see gives you the iron infusion. You have got to be weak & exhausted with the low count of 7. Again, welcome aboard

Welcome Meg! This is the best family forum to have for knowledge and support. Many of us have different forms of Dysautonomia, but we all seem to have similar symptoms. You and your family will be in my prayers. Just take each day one hour, one moment, one second at a time. You will get a lot of love, support and yes hope here too! A friend of mine said it well recently, "When you are having a bad day, remember the good days that you have and will have again." I had a rare day with her going to a movie and actually doing a little shopping without a Wheel Chair or Rollator Walker. I even ate out too! It may have been only 6 hours out of the house, but it was a great 6 hours. It is those precious moments that are memorable. When I was 1st diagnosed in December 2010, I was bed and chair bound (extremely weak & symptomatic). With medications, proper diet, non invasive treatments and changes in my routine life style, I have been able to do little things around the house and work again (I do predominately a desk job). I would and still do set little goals for myself each day. The network here has great information about POTS and treatment modalities. Trying some of the treatment modalities such as salt loading, support hose, small meals, drinking lots of fluids, Vitamins B, C & D, along with using a walker or wheelchair, etc....could help you starting feeling better. I hope also that once you find the right medications for you, this too will help you to feel better. Hugs & love to you & your family

Glad to hear your daughter is able to drink Ensure. The Stoneyfield Yogurt Smoothies are great and taste much better than Ensure. I couldn't drink Ensure because of the high fat content, but fell in love with drinking the Stoneyfield Yogurt Smoothies. Giant Eagle has them. Trader Joes also carries products made by Stoneyfield. Their Yogurt is great too especially the Greek Yogurt. They have a website with their products. Danimals are pretty good too! They are pretty tasty too! Encourage her to eat small meals. Hopefully with time, she will be able to take in more. I am on Mestinon and Domperidone which helps with motility. I like your daughter would take a few bites and feel full. I drank mostly Stoneyfield Yogurt Smoothies and made my own fruit smoothies because I couldn't eat enough calories. With time and the medications, I drink smoothies on occasion, but have been able to eat several small meals through out the day and evening right up to bed time. I count my calories which has helped with knowing how much I am taking in. I bought the book by the Calorie King called the Calorie Fat & Carbohydrate Counter. He also has other diet guides & counters for Salt/Sodium, Protein, Caffiene, Fiber, etc....His website is www.CalorieKing.com. It has really helped me know how much I am taking in on a daily basis. When I first was diagnosed in December 2010 with Dysautonomia, I worked with a Dietician-Beth @ the Cleveland Clinic, who really educated me (provided me with a diet) specific for Gastroparesis and Dysautonomia. She said it well, "You will need to make this a full time job." It has been and still is a full time job for me, but I am enjoying eating even if it is small meals, but some of my favorite foods again and again.

Here is Dr. Robert Shields phone numbers & address: Address: Neuromuscular Center Neurological Institute 9500 Euclid Ave. Desk S90 Cleveland, Ohio 44195 Phone: Tel (216) 444-0855 Appointment (216) 636-5860 or (800) 223-2273 x40855

I go to the Neuromuscular Center/Neurological Institute at Cleveland Clinic. I see Dr. Robert Shields, Co-Director for Syncope & Autonomic Disorders & Director of Autonomic Laboratory for my dysautonomia/neuropathy. I just love him. He is very compassionate, caring and spends a good hour or more with you. He is hard to get into to see-right now about a 4-6 month waiting list to see him. You may want to make an appointment with a fellow Neurologist, who consults with him. I got an appointment in about a month with a fellow Neurologist who consulted with Dr. Shields and met Dr. Shields on my first visit after the fellow Neurologist evaluated me. He spent at least an hour with me after spending almost 2 hours with the fellow Neurologist. I have been seeing him ever since-on a 3 month basis. He also gets back to you quickly by phone. He encourages phone calls and questions. I would highly recommend him.

Try www.brightlifedirect.com. Their prices aren't bad and they have their own brand Allegra (not sure of spelling) not bad in price and pretty comparable to the name brands. I wear the thigh-high hose 15-20mmhg. Of course my insurance doesn't cover them. The higher the mmhg, the higher the price, but still not bad in price. Hope this helps.

Dr. Robert Shields at the Cleveland Clinic in Cleveland, Ohio does a full battery of Autonomic Testing. I see him for my Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). I know he is pretty booked with appointments. It may take you 4-6 months to get in to see him. You could ask if he has a doctor doing a fellowship under him and you could get in sooner to see the fellow ship doctor who consults him during your visit. I have actually seen the fellowship doctors and during the visit, they go over all their findings and treatment plan with Dr. Shields during the visit and Dr. Shields usually comes in and winds up spending a good 1/2 hour or more with you. I just love him. He is sooo compassionate and really gives you hope. I have liked the fellowship doctors too. They also have been supportive and compassionate. Hope this helps.

I see Dr. Shields-Neurologist at Cleveland Clinic in Ohio and GastroEnterologists at Cleveland Clinic. I am also followed by my PC who happens to be my cousin for minor things-colds, flu. It can be very frustrating not having the right doctor, because before Dr. Shields, I had no treatment and everyone was making me believe it was all in my head feeling weak, shortness of breath, constipation, weight loss, etc....It wasn't til I literally passed out-crashed & burned and was hospitalized at Cleveland Clinic that I finally had a diagnosis. The sad thing is it took over a year to find out and mostly likely over the course of 5 years to identify that is when all my problems began after I had my gall bladder out. Good Luck with finding the right person. Will keep you in my prayers.

Hi Caroline, I was diagnosised with Orthostatic Hypotenstion Dysautonomia (Autonomic Neuropathy) not POTs yet, but am suspect. I do have Gastroparesis and this is the best place to learn so much and also a very loving family. Welcome and when I have more time I will share my symptoms, etc...A great big Hug to you.

Beautiful poem and what a loving and giving mother you are with the depths of heart and soul. Tears are running down my cheeks as I had a bad weak since the weather is warmer here in the North. I don't tolerate heat well and can't wait for the cool weather again. Thank you for sharing as it expressed exactly how I am feeling with not looking forward to summer months. A great big hug to you.

I am blessed ladies to be able to still have my hair dyed with a good beautician who uses a lot of natural products. I also order from the pharmacy such as CVS a special bar of soap for my skin called ZNP. I use Infusion23 shampoo & conditioner for my hair which seems to be ok. Like many of you, I am on a special diet: low fat & fiber diet and get creative with my meals. I was headed for a peg tube, but with the help of a dietician, Domperidone & Mestinon, I avoided the need for it. I try little bits of things to see if I can tolerate them-small meals are the only thing I can tolerate. If I take in too many gram of fat-ouch. My husband and his family help me with cooking organic and creative meals with the limited types of food that I can eat. Lieze-my heart goes out to you with the weight. I am 5'6 and weigh 134 lbs. I go up & down a pound or 2 with eating, but I am maintaining and holding my same weight. I am with others, continue with small bites and food elimination and possibly seeing some one who deals in holistic medicine. They may be able to identify foods that you may not be allergic too. I too am surprised you are able to drink as much milk-I am assuming whole milk which I can't because of the fat content. I would suggest you get creative with your milk and make fruit smoothies/milkshakes to give you some additional calories. If you can tolerate foods high in fat content, that will help you with calories. We are all here for you and feel your pain. A great big Hug to you.

Hi lizababy, WalGreens carries Theratabs which are salt tablets. If they don't have any on their shelves, they will order them for you. You can also Google Salt Tablets. There are several on there. Mountain Dew has a lot of Soduim followed by Dr. Pepper, than Pepsi & Coke. Soups and Broths have Soduim. Gatorade and Power Drinks do contain a lot of Soduim. Again Google High Soduim Products. Hope this helps

HI Rach73, I agree with Bev about you being on the right diet and may be dehydrated. Google Gastoparesis Diets. I have Gastroparesis and the dietician at Cleveland Clinic in Ohio recommended a low fat diet. I actually count the amount of fat I take in because if I eat too much at a meal-oh the discomfort (pain). I am also taking Domperidone 20mg 4xday (before meals & at bedtime) along with Mestinon 60mg 3xday which helps with motility too. They were my life savers as I was ready for a peg tube and getting on the right diet and fluid intake along with the right meds kept me from needing the peg tube. Some fluids and foods: Stonyfield Yogurt Smoothies & Products, Milkshakes using skin, soy or fat free milk, fat free Breyer or Walmart Brand Vanilla or Chocolate Ice Cream or other Light brands of ice cream and canned or fresh fruit (I make my own), Carnation Instant Breakfast, Slimfast-watch the fat content, Gatorade or Power Drinks, Different flavored fat free Broths, low fat or fat free Puddings & Custards, Apple & Fruit Sauces, Fruit & Vegetable Juices/Drinks; V8 Fusion & Tomato, Regular or Diet Sodas; Mountain Dew has the highest Soduim content followed by Dr. Pepper than Pepsi or Coke, etc...I was told to chew foods slow & well. Low fat crackers, pretzels, Lays Light potato chips, cream of wheat, eggs, low fat Smuckers peanut butter, well cooked/soft vegetables. Get the Calorie Fat & Carbohydrate Counter Book by the The Calorie King. His website is www.CalorieKing.com. It also has Sodium & Alcohol Counters too. I find eating more organic foods also helps. Walmart & Giant Eagle has a lot of low fat & fat free foods & drinks. I use "I Can't Believe It's Butter" & Pan for cooking. I also drink a mixture of 1 teaspoon of salt, 1 teaspoon of sugar to 1 liter of Water. Hope this helps

Hi PetuniasMom, I am going to throw out a few other things-you did say she was grumpy and not cooperative-was she just not feeling her normal self? She could have or be coming down with a virus that could cause her blood pressure to run normal. There are so many variables out there that can affect the blood pressure whether being meds, activity, eating, drinking, etc...My only suggestion would be to monitor her blood pressure daily with same arm and same time of day. Make sure she is resting for a least 15 minutes before you take it, than have her stand for 3 minutes to see what it is. I believe you should take it lying, sitting than standing for 3 minutes without the Midodrine. If it is staying in the 100s+/70s+ than she may not need to be taking Midodrine unless she is truly symptomatic. I would share these findings with her physician and see what he/she has to say about it. How wonderful if your daughter could be off Midodrine.

Welcome to the best knowledgeable and loving forum family here. Have you tried Mestinon or Florinef? These 2 drugs may be alternatives to Midodrine. I am on both Midodrine & Mestinon which helped me to walk and do simple daily activities again after being bed, chair & couch bound. I also have Gastroparesis and GERD. I am taking Domperidone 20mg before meals & at bedtime for nausea & motility. I get it from Canada. I was not able to tolerate Reglan or Erthromycin. The Mestinon also helps with motility. I take Prilosec for GERD. I salt load, wear compression stockings, eat low fat/fiber diet 6 small meals a day, drink lots of fluids some low in carbs and do other vitamin supplements such as Alpha Lipoic Acid, Extra Vitamins B, C, D along with Moducare-Immunity pills. Many of us here are a work in progress trying to find the best treatment to treat our symptoms. A great big Hug and welcome to you

Hi PetuniasMom, Midodrine is excreted from the body through urine. By the time you give the next dose, the previous dose is most likely out of the body. I would recommend to give her the medication as prescribed the 2.5mg as the next dose of Midodrine will keep the blood pressure in the 120s/80s. I am believing the medication is holding her blood pressure at a normal rate which is a good thing. If you are not sure you are comfortable giving her the full dose than does the 2.5mg have a line on it? You could cut the dose in half to 1.25mg. I have 2.5mg tablets (I am on 5mg and take 2 tablets 3xday) with line on them. They can be cut in half which would take them down to 1.25mg.

Bruc & Sarah, Midodrine is used in patients which have symptoms of low blood pressure when standing and in people whose daily activities are severely affected by Dysautonomia even after other treatments are used (e.g. support stockings, salt loading, increasing fluid intake). It acts on the blood vessels to raise blood pressure. For me being able to walk and do simple activities of daily living (e.g. brushing teeth, combing hair, washing face at sink) again is what Midodrine and Mestinon has done for me. Like I shared in a previous post, the benefits out way the side effects. I have read many posts that some individuals can't tolerate Midodrine, Mestinon or even Florinef, or use them alone or in combination and some no medications and do other treatments such as supplements, therapy, etc...It has been trial & error for me. I do the medications along with other treatment modalities and supplements. Thanks to this great group of knowledgeable & loving persons, I have found some normalcy in life.