mwise

I think you need to talk with the doctor or someone from his/her office. It sounds like the Alinia isn't working. It should be slowing the diarrhea not causing more. I know how you feel I just got over a bout of intestinal flu which caused my microcytic colitis to flare up. I had diarrhea everyday all day for a month. I had stool cultures done-negative, was on immodium and lomitol and nothing helped. It had to run its course. I like you lost about 8 lbs and was miserable-housebound. My OH symptoms were horrible. I stayed hydrated with Gatorade, homemade smoothies and ate a brat diet-bananas, rice, dry toast/crackers for the month. I spent most of the time resting and close to a bathroom. It has been about 10 days that I have been back to normal with bowel movements and OH symptoms under control. I have Gastroparesis and take Domperidone for it along with a Probiotic. I did keep taking all my medications while having diarrhea. Hang in there and I hope you feel better soon.

Sorry I don't have any suggestions. You have done all I would have suggested. Once the adrenaline rush is over-be prepared to crash and sleep for hours. I have had those sleepless nights and it does catch up. My symptoms left once I had a good nights sleep. Good luck.

I am so happy you decided to go. It makes a big difference spending quality time with friends and family that understand. Keep setting small goals. Take each day as it comes and enjoy.

I don't take Cq10 but I do take Vitamins B, C & D along with a high potency multivitamin. I have had no side effects from them. They do help me with energy and feeling over all better especially in the morning. No symptoms of feeling wired. I only take one of each a day and Vitamin D once a week.

I too am short of breath, heart races and feel weak going up and down flights of stairs even with a landing break in-between. Before Dysautonomia, I had no problem doing stairs, running, jogging and excercising, etc...Deconditioned or not, stairs are difficult, but I keep doing them because I have a 2 story home and want to maintain or should a say try to keep some type of normalcy in my life with activity. I just take frequent rest periods.

I would push for your PCP to get you a referral and appointment. He/she can usually get you in quicker with Cleveland Clinic than you calling on your own. I see Dr. Shields, Neurologist & Dr. Bhatt in with Dr. Fairbanks, GI Doctor at Cleveland Clinic. I know Dr. Fouad at Cleveland Clinic is for Cardiology and heard very good things. Once you are in with one of the doctors, they usually will help you get in to see the other doctors. If you are willing to see their NPs if they have one, you can get seen sooner. Good luck

I miss my hot showers and warm baths. I do lukewarm because even though I am cold, hot showers and warm baths make me more symptomatic and fatigued. I wish I could wave a magic wand and make us all normal again. Just find what works best for you and enjoy .

Hi, I am with everyone else. Start low and slow. Definitely contact your doctor and let him/her know about the side effects. I started on 2.5mg Midodrine 3xday and also take Mestinon 60mg 3xday. I am still on the same dose of Mestinon, but now take Midodrine 7.5mg 3-4xday depending on what I am doing. The benefits of being able to walk and get out of the house out way the side effects. I just wish it lasted longer than 4 hours because I can really tell when it wears off, because I am weak, fatigued and can't walk only a few steps-need to sit or lay down quickly or I will be on the floor. Good luck and keep us posted.

Hi Issie and all, My stool cultures came back negative and the GI doctor wants to do a Colonscopy to see what is going on. I am still having bouts but only in the evening after dinner and seems I start cramping and my stomach makes noises about 45minutes to l hour later and that is when I start to empty out quickly every 15 minutes to 1/2 hour until it stops. Wears me out. I did lose 8lbs and holding around 125 which I was 133. Definitely look skinner:(. I did get the Florastor and started taking it. I am still taking the other Probiotic-Advantage. They are both different and I hope it is ok to take both. I see the GI doctor on Friday March 23rd and I will probably have the Colonscopy and I am also going to suggest n Endoscopy too. Might as well have both checked so I can get some type of treatment. Thank you all for caring. I am hanging in there-still eating, staying hydrated and hoping this all stops soon. I just want fixed.

I picked fatigued which right now my GI symptoms appear to be worse than ever. I would like to get rid of all symptoms if I could. I pray everyday for a cure for us all .

Welcome to the best forum for support, knowledge and alot of love

Well, I didn't get the results back on the stool cultures, maybe tomorrow. You are right Issie, I need this fixed as when I start going it is about every 10 to 15 minutes for hours until I am finally exhausted. I did do food elmination diets in the past to find triggers. I was tested for Celiac which came back negative, but I still try to be semi-gluten free. I am going to call back the GI doctor at Cleveland Clinic to see if he can get me started on something. I am going to try the Florastor Probiotics. I take the Advantage Brand, but if that one works better, I am going to take it. I like the papaya puree as I use my blender alot to make smoothies. I did have a colonscopy December 2010 during the time I was diagnosed with OH dysautonomia. It showd Diverticulitis and Microcytic Colitis, which at the time, I was actually constipated. I was so symptomatic with the dysautonomia and had severe constipation at the same time. The GI doctors got my bowels working with Miralax and than I switched to good old prunes that kept my bowels moving daily for the past year until the food poisoning 2 weeks ago. That is when this all started and hasn't stopped. I am managing to stay hydrated so far especially with protein smoothies. I am determined to beat this.

Thanks all of you for the support and ideas. I am taking a Probiotic, but I am going to try Calcium and Symbiotic Colostrum. I am willing to try anything. I am miserable. I know how you felt Issie because that is how I feel now. I actually slept in the bathroom Saturday & Sunday night because I was exhausted literally running/crawling at times back and forth from the couch to the bathroom so much. I am hoping today I get the results back from the stool specimen/culture sent so I can get some type of medication/treatment to fix this. I will keep you all posted .

Back in 2007, I was diagnosed with Microcytic Colitis and treated with Endocort EC and Creon which I weaned off the medications in 2009. I went from daily bouts all day of diarrhea to constipation. Well, after eating something 2 weeks ago that didn't agree with me-possible food poisoning, I have been having daily bouts of diarrhea once again. I called my GI doctor at Cleveland Clinic and he thinks the food poisoning may have tripped my colitis again. He ordered stool cultures-sorry if I am grossing anyone out and I am waiting on the results to rule out parasites, bacterial or viral infections. I also am scheduled to see him March 26th. Has anyone had this problem? Any suggestions for stopping the diarhea? I tried Pepto-bismal, Immodium and Lomitil to no avail. I am trying to stay hydrated, but did lose a few pounds which I can't afford to lose. I am willing to try any homeopathic treatments to stop this. I am miserable and housebound right now.

Welcome to the best forum and support system for what you have. There are many on here who may have the answers for you. Unforunately, I never experienced swelling or a high hematocrit. I am happy to here you have found some good doctors that seem to be trying to help you get a treatment plan right for you. Good luck and keep us posted.

Welcome to the best forum for information and support to deal with POTs & Dysautonomia. I am sorry to hear anyone would tell you to just get used to it. No, I agree with Rama and puppylove that there are doctors out there to help you find a treatment plan specific to you to help you get back on your feet. Some on here have gotten better and resumed their lives and there are many on here like myself that go in and out of remission and try to have some normalcy in their lives. The forum will help you with understanding what you have and help you find what will work for you. Keep us posted with your planned visit to Mayo. It could very well be a start of getting you back to your normal self.

I am glad to hear you are seeing a GI doctor as he/she may be able to order some tests that can figure out why you are having the problems with swallowing that you are along with the nausea and not being able to eat. Hopefully the doctor will order blood tests such as a BMP-checking your body's electrolytes for you to determine if you are dehydrated along with a CBC (Complete Blood Count)-you may be anemic which is another sign of dehydration. The doctor can also tell by your vital signs-blood pressure, pulse, respirations and temperature along with checking your skin turgor and eyes. He/she may order more invasive tests like an Upper GI X-ray with or without contrast or an Upper Endoscopy-a scope of your throat area down to your stomach to try to pin point a cause for this. Good luck and keep us posted.

Sorry you are having difficulty with urinary retention. I have the opposite. I go constantly and have urinary frequency/urgency. I know every bathroom in my home town and to/from work. I take Midodrine 7.5mg 3xday & prn when I am out late and drinks tons of fluids during day & night. I wish I didn't have to go as much. I will take any suggestions for the opposite.

I too have this problem along with urgency since I increased my fluid intake along with taking Mestinon & Midodrine. Lol I know all the bathrooms in town and on my way back and forth to work. I have learned to live with it including frequent bathroom stops.

Hi Mirry, Welcome to the best information and support forum on-line. I was diagnosed in 2010 at the Cleveland Clinic in Ohio with Orthostatic Hypotension (OH) Dysautonomia. I would recommend as others have suggested to find a doctor-specialist that can help you. I don't know why your current doctor is saying he can't provide treatment for you for OH unless he truly doesn't understand what you have. I don't know where you live, but i do know this forum has a list of qualified doctors that could help you. As with many of us on this forum alot of medications and treatments may be trial and error to find what works best for you. I wasn't able to take Florinef, but Mestinon and Midodrine have worked for me along with homeopathic treatments, salt loading, support hose, crossing my legs when standing, etc...finding a plan that works for me. Good luck and pm me if you would like to talk further.

Well water 30 years and holding. Had it tested when I was pregnant and found good spring water. Don't use any softeners or anything. Hard to drink city water. Do drink bottled water, but refill the bottles with well water.

Welcome to best forum around that gives alot of support, knowledge and love. I have Orthostatic Hypotension (Autonomic Neuropathy). I work in Parma, Ohio and live near the Youngstown/Warren Area. My doctor is Dr. Shields at Cleveland Clinic. You can pm, email or call me anytime.

I like the others posted have done process of elimination with triggers and lean toward frequent very small meals-grazing on fresh fruits, vegetables, low fat/fat free cheeses, foods high in protein-boiled eggs, and low fat/fat free foods that I can find. I also watch the amount of carbs that I take in too as it fatigues me. I try to avoid high fat foods because of my Gastroparesis and Gerd. I have to watch nuts because of Diverticullitis. I avoid large meals and stick with lean meats about 1-2 oz-lots of small bites at different intervals. I do alot of yogurt smoothies home made for calories, easy digestion and weight. I avoid Ensure as high fat content and hard to digest. I do believe what you eat and the amount you consume (volume) will make you symptomatic. I also take Prilosec & Domperidone to help with motility and digestion. Good luck as one Dietician said to me, "You need to make finding the right foods and fluids a full time job." Truth be told.

I enjoy reading a good book and the bible, watching TCM, taking short walks around the house with and without my rolator walker, playing free computer games, occasional outings to a movie, a meal and mall again with and without rolator walker with very close friends and my family that watch out for me and just spending time with my family as a good listener. I enjoy everyone here also. Sending hugs and love to all.

I have Gastroparesis and take Domperidone 20mg before meals and bedtime which works well for me along with Mestinon 60mg 3 times a day that is also supposed to help with motility. I feel the Domperidone works the best. I get it compounded in the US with a prescription. I have also gotten it from Canada too. It is very expensive and not covered by my insurance. A diet low in fat also helps for Gastroparesis. PM me if you want to more specifics.