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You need to take it with food. I would also recommend a stomach protector too. I have been lucky and have no problem with Mestinon. Good luck.

I am sorry to hear you are experiencing symptoms again. I hope you get back to your normal self again. Sending you prayers and hugs. LOL. I am 57 too. I have good and bad days so I try to take each day as it comes. I may have one day good and the next feel weak, constantly dropping to the floor, nauseated with completely emptying out my bowel system-sorry for sounding gross, etc...Remission can be one day sometimes a few hours a day sometimes a few minutes feeling normal for me. Just take it slowly and use this site for in-site in helping you get back on the road to recovery again.

So sorry about the family thing. It is hard enough to deal with this disease let alone living with future in-laws. Is there any other place you could live? I don't know your financial status, but hopefully this is only short term. I would make every effort to keep your appt. and would try if at all possible to find someone to drive you. Could someone maybe stay with the kids that day you have to go to help you out? Is there anyone else to help with the household chores? Could your children help-maybe make it something you all do together to help take some of it off you. I will keep all of you in my prayers that things will get better. Sending hugs to you.

jrlehnardt-I have Gastroparesis. It was dxd by being scoped. I had a Gastric Emptying Study that came back normal-one number higher would have been abnormal and I was already being treated with Domperidone which helps with motility and nausea. They had me try Reglan and Erthyromycin, but I couldn't tolerate either. You may want to change your diet to a low fat diet which will help with motility/digesting the foods. It really made a difference for me. I was ready to have a peg tube put in because I couldn't eat and lost so much weight. I also recommend the book: Calorie Fat & Carbohydrate Counter by the Calorie King (www.calorieking.com). The key is to keep your fat intake low at meals. More small frequent meals also helps. Good luck and I am happy you had good results at Mayo. Thank you for sharing.

I know alot of persons here use a recumbant bike and have done exercise programs. When I am able to stand-I wear a pedimeter and take short walks every few hours to keep me moving. I also do isometrics when I am sitting down even at my desk at work. I do everything low impact. I am trying to keep from getting too deconditioned and like many here push myself even when I am symptomatic. I would gage it on how you are feeling. Good luck.

I can empathize with you all. Mornings are horrible. I basically crawl to the bathroom because of urinary urgency, fatigued, head fuzzy and buzzing in ears, bp low with no reading and high heart rate, body achey all over, legs feel like jelly, aura in front of eyes, etc...I try to hydrate which helps alittle, but it is the Midodrine, caffiene, support thigh highs and rest of medications and homeopathic treatments that get me going in the morning. I get up at 5am and it takes 2 hours until I am able to get up, actually stand, walk and go to work. In that 2 hour period, I do alot of sitting and crawling to get ready for work. Evenings aren't much better. I am usually exhausted by the time I am done working and wind up doing more crawling, sitting and lying down.

Welcome Carrie and sorry you are having difficulty with being symptomatic. Know there are alot of persons here that are going through this also an will help & support you anyway. Hugs and love to you.

Sending hugs, prayers and love to you all. Keep us posted. We know Kayla is in good hands. Be strong and know many of us are here for you all.

Welcome to the forum Mark! Congrats on finding a doctor who is knowledgeable in POTS. This is the best forum for expertise on everything from soup to nuts on Dysautonomia. I live in Northeast Ohio and see doctors at the Cleveland Clinic. We are blessed in Ohio to have quite a few doctors that are knowledgeable about what we have. Hugs to you.

Welcome littleangel! I too am a nurse of 30yrs+ and still working in hospice and home health. These may be areas you want to look into. I like you work full time and find all I do is work and sleep. In-between, I try to do little things around the house. I am married with 2 teenage twin daughters along with 3 cats. I do have a special female friend who helps get me out of the house and helps me when I am at my weakest. Just for instance, tomorrow we are doing a Walmart run to replenish household items. She drives me and helps me with shopping making sure I don't get too weak and pass out. It may only be an hour or two at Walmart, but I am out of the house enjoying time out with a friend. Do you have any one person in your life that can help you? I know how difficult it can be losing a boyfriend. I was diagnosed in 2010 and only this past year did my husband finally begin to understand what I have been going through being symptomatic, passing out, etc...I have been married almost 30yrs and this disease has tested my marriage and continues to test it. Even my children don't always understand what is going on with me. I have to constantly remind them of all the limitations I have and can't do the things I used to do. They all want the normal mother and wife back, which we all know is not going to happen at this time. I do believe in miracles but at the same time am a realist too. All I can say is to try to take each day as it comes and make the best of it. Put yourself 1st and know your limitations. Sending you hugs .

I have OHD and autonomic neuropathy which was diagnosed in Dec. 2010. I have identical mirror image twin 17 yr old daughters who I had genetically tested to find out if they were identical which they were with 10 out of 10 concordant (identical) genes ( they only needed 7 out of the 10 to be considered identical or monozygotic twins). In the past couple of years, my one daughter has complained of feeling light headed when taking warm/hot showers or in the heat and also weak and fatigued on & off especially when she doesn't hydrate well during sports. She had a really bad infection last summer which she has never quite been the same with her endurance. She was treated with 3 antibiotics at the time. She was tested for mono and found negative. My other twin daughter has been fine. I am now wondering if the one twin daughter has it? I am in agreement they should do some studies with families and twins. Next time I see my neurologist at Cleveland Clinic, I am going to ask about doing some genetic studies on our family. Anyone out there having this done, please share or keep us posted.

Congratulations! It is great to be out in the work force. Makes life seem alittle more normal. Hugs to you and all here at DINET.

Hugs to you all. What beautiful girls they are. How wonderful everyone got to meet and spend time. Thank you DINET for giving us all the opportunity to share the good and bad times.

Hi Kayla, Don't be frightened with being on TPN. I am a nurse and worked with TPN for years. You did say you had a port in? They will run it through your port-quite painless except the stick of the needle. TPN contains alot of nutrients-electrolytes and I think you will be surprised how much better you will feel on TPN. They will monitor your blood counts closely to make sure they are treating you with the right mixture of nutrients-electrolytes. They hopefully will take you off solid foods and only give you ice chips to rest your gut-stomach. TPN is usually in place of oral intake of foods. You shared you have Gastroparesis-they should be giving you a diet low in fat for Gastroparesis. This may be one reason why you are nausated and vomiting because with Gastroparesis, it is hard to digest foods high in fat content, which also causes pulling of blood to your gut to help digest the fatty foods causing your POTs symptoms to flare up. I would find out what type of diet they have you on in the hospital. I would ask for a dietician-consult to see you. It made all the difference for me being on the right diet for Gastroparesis besides me taking Domperidone too. I will keep you in my prayers and keep us posted on your hospital. I am a mother of teenagers and know your mother hasn't given up on you probably is just frustrated on how to get you better. Encourage her to talk to other mothers here. We are here for her too. Hugs to you both.

For me, Midodrine has been a God sent. The benefits out weight the side effects of itchy head, skin crawling, feeling cold and urinary frequency. I take 10mg 3-4xday whether I am lying or sitting down. Without it, i would not be able to stand or walk. My bp on it even standing after 3 minutes is only 80-90/50-60. I get about 4-41/2 hours on each dose. I can tell when it wears off because I get weak and need to sit down right away when i stand or I will be on the floor. I wish I could only take one dose, but unfortunately need 3-4 a day to keep going. When I am not on it, I hydrate like crazy with salt water, coffee, etc...to get my bp up. The hydration gets me short distances in the house, but once I get the Midodrine in me and it starts working by me feeling the side effects, I can walk, do things and work my full time job out of the house. Good luck and I hope it will help you.

I was getting it in Canada, but now get it from Mass through America's Compounding Center. I had my Cleveland Clinic GI Doctor fax them a prescription. It has worked great for me. I was unable to take Reglan-side effects horrible and Erthromycin didn't help either. I take 20mg 4xday (before meals & Bedtime). It really helps with nausea, bloating and motility. I hope you can find a doctor that will prescribe it. Good luck. Here is the address: America's Compounding Center 153 California Street Newton, MA 02458 (617)527-1563 (phone) (617)527-1565 (fax)

I agree with JennaC. I take Domperidone 4xday (before meals and at bedtime). It helps with nausea, bloating and motility. I have had no side effects from it. It really was the only drug that has helped me. I had tried Reglan and Erthromycin without success. I also like JennaC do a Gastroparesis Diet low fat/fat free Diet and watch fiber due to having Diverticulitis. Good luck.

I take Domperidone 20mg before meals and at bedtime (4xday). I get it in America thanks to someone sharing on this site from America's Compounding Center. You can google them. I had my GI doctor from Cleveland Clinic send them a prescription. I do pay for it out of my pocket. It really does help me with nausea and eating. I have Gastroparesis and am on a lowfat/fat free diet with 6 small meals or more a day. I also make smoothies in-between and stay hydrated with G-Series Gatorade. You are welcome to pm me.

I take Midodrine 10mg 3-4xday spacing between 4-5 hours. I have the side effects, but being able to walk, work and get out of the house out weigh the side effects. Good luck and I am in agreement with others, go slow, low and spread out your medications. Good luck .

My daughters and their friends went to see the Hunger Games and they all loved it. They describe it like a normal action movie with graphics and has a love story in it. It has some gory scenes but nothing like the Saw movies according to them. Hope this helps. Good luck with your decision.

I would see Dr. Shields or his NP Julia as they will run a battery of tests and he is so compassionate and listens to you. They will spend alot of time with you too. I see them a the Cleveland Clinic. PM me if you want details.

I know exactly how you feel with being scared to be alone. I didn't like being alone before having OH. I have friends, family and my kids periodically text or call me to check on me when I know I am going to be alone. Even my co-workers/colleagues call or text me everyday. We do checks every couple of hours until I give them the signal that I am going to be busy doing something, want to go to bed or someone is home. It really helps to reduce my stress level of being alone. I also keep the laptop close by me and pick my favorite sites like this and fb to connect with others. I know you shared that your boyfriend works doubles. Could he use his lunch and breaks to give you a call or text? You knowing that he is checking on you could help lesson the fear. Just pm me and I will call or text you if you like.

Love my Gatorade-G Series. I drink about 50% ( 2-3 liters) Gatorade all day along with water, coffee, tea, diet pop, oj, etc...I hydrate like crazy even during the night because my blood pressure is so low at night. It does make a difference. The only thing I don't like is the frequent bathroom trips. lol

Blurred vision is part of dysautonomia along with many other symptoms. I deal with it everyday. Being proactive with treatment modalities is 1st and foremost. Everyone on here will tell you that it will be trial and error to finding what works and doesn't work with Dysautonomia. If fluids work-is she drinking power drinks like Gatorade to give her the electrolytes (sodium) she needs. She needs to take in at least 1/2 to 1/3 of them daily balancing with other fluids like water, juices, etc...Salt everything which will also increase her blood pressure along with the Thermotabs. Take the Midodrine as it definitely increases the blood pressure, but be aware of the usual side effects of feeling cold, hair/head itching, tingling/skin crawling, etc...that is how I know it is working. There are many other things that work too. Taking a multi-vitamin daily, extra B complex vitamins, Vitamin D if she doesn't get enough sun light, semi-warm (cool) showers, support hose, etc...You just need to stay positive for/with her. I have twin 17yr old daughters and know it is a challenge with getting teenagers to do anything. Good luck and pm me if you want to talk.

I agree with the others too regarding their comments. It is a personal choice and you got to do what is best for you for what ever you are doing. I push myself too and try to go without using anything most of the time and pay dearly when I don't. I decided I would use my rollator walker when I am out and going for distances so if I need to sit cause I feel fatigued and tired I can. It has made my life more worthwhile by being out in the world enjoying life again. Good luck with what ever you decide, but enjoy life and so happy you went to the zoo. I like the lions and tigers too.