Sheila1366

I do this too. When my gastroparesis is in a bad flare, I feel as if i am gonna stop breathing. I also have a very tough time talking...I will have a very tough time breathing if I talk for more than a few minutes.This is new and is getting worse. Scary , I agree.

I have been having the awful headaches. Numbness in the face,head and ears. My hearing even gets bad for awhile. Been going on for a few days but happened like this a few months ago, so bad I saw an ENT dr. to have my hearing checked. By the time I got in to see him , it was better. The numbness tends to be my right sided. I just bought some Advil migraine today. All i ahve for pain is tramadol, that's for my gastroparesis pain and it's like taking an asprin at thos point. Anyone ever had this happen to them? I do see the neurologist at Vanderbilt til Jan. 24th.

I don't think all GES tests(gastric emptyng tests) are always accurate. I think some peoples stomachs empty at different rates day to day. I do have gastroparesis and that nausea feeling is all too common with me too. Often wake up to nausea. I take liquid phengran all the time now...3-4 tsps. 3 -4 times day. Liquid diet is good on the days when the nausea is real bad. Atleast for me.

I seem to be having more and more trouble with my knees buckling. I stay so weak anyway from not able to eat much but am wondering how much of the weakness is coming from the dysautonomia. The other day when I was walking it felt as if my hips were going to pop out of socket. Anyone else?

I ordered some today for my daughter. Wanted to try this before trying florinef. So far all we are doing is not helping to keep her BP up. Thanks.

Thanks everyone.

We bought some at Goldtoe yesterday. They are for my daughter, she doen't have POTs but very low BP. They seemed to be helping. Found some on amazon but they are pricy. She is young and would like to find something cute but there aren't many color choices.Thanks.

Sleep, and more than a few hours. Only time there is no pain,nausea,fatigue...etc.

My family dr. mentioned the shy-dragers first. Have had terrible time with motility,bladder is having trouble emptying,heart issues,hypoglycemia,chronic head and neck pain,blood pressure drops when anything is in my stomach,trouble walking at times,vertigo,poor balance,hoarce almost all the time and my handwriting has been getting worse. My cardilogist thinks it could be PAF. I had a tilt table back in 2008 and was diagnosed with dysautonomia then but never found out the type I had cause couldn't afford more testing. Don't have the money now but have gotten so sick. There at times I lay in bed at night and just feel I am gonna stop breathing. I get so sick with gastroparesis and blood pressure problems, I just am so weak. Often my legs give out. Keep a wheelchair in the car all the time now.My family dr. told me that no one can be this unlucky without it all being linked somehow. He has a patient that has shy-dragers. It really scares me.

My motiltiy dr. said no raw fruits or veggies, red meat. But at this point my GP and coloninc inertia is so bad I can only handle some saltines,maybe mashed potatos,plain white rice(can't have soy because of intersitial cyctitis). I do tolerate lactose free fat free milk with some protein mixed in but even now it is giving me a terrible time. Everyone is different and at different levels of GP I have found. I miss salads and fresh fruits and veggies. More than I do red meat, or any meat.

Mine has been as high as 185/132 with heartrate in the 100's just a couple of weeks ago and as low as 80's over 50's with heartrate in the 50's.

I have an appt. to see Dr. Raj. Not til Jan.24th but atleast it is made. Gonna have to save up for the 11 hour trip. I am hoping for some answers. So afraid I have PAF or Shy-Dragers.

I have gastroparesis,pelvic floor dysfunction,intersitial cystitis,FM...etc. I know I will have pain. But it seems the pain is increasing. Mostly lower back,hips and upper legs. Wonder is the pain a normal part of dysautonomia? It could be FM. Just not sure, just so much wrong with me.

Thanks for the help but I can't eat meats without having alot of issues. Been dealing with this for 2 years now. Dr. Koch gave me a GP diet to go by.I eat what I can with the least amount of side effects. Believe me it's not by choice. I also drink a protein drink that my nutritionist has approved for me.She has given me a list of safe foods also.I don't eat for the joy of eating anymore, it's for survival.It's very difficult living this way and I have had some of the best motiltiy dr.'s working with me.Not everyone is the same and what works for one does not always work for others.

It took me a few minutes before I got out of bed. Mornings do tend to be worse for me lately but have had this happen several times before.

Thanks everyone. I haven't had any bloodwork so far. Everyone, dr.'s , are waiting for me to get into Vanderbilt. I have been tested for celiac, so that is not an issue. I can get lightheaded even after drinking water. It's just anything in my stomach,and since it emptys so slow I think that is causing some type of drop in bloodpressure. I read that this was a symptom of PAF. I am back on liquids right now. My motiltiy dr. had me taking remeron. For me and in some it can cause you to eat even if you have no appetite. I was eating solids....mashed potatos,white rice,crackers,humus and peanut butter. My gut was killing me. I got a little obstructed. Took 6 doses of miralax to get anything going and still I am struggling. My heart gets very out of rythme too.I did have an echo gram and wore a monitor for 48 hours. Heart rate would get very low especially at night and it was beating irregular many times. My cardiologist said it is dysautonomia but he is not sure what type, poosibly autonomic failure. I did get rid of all caffine,soft drinks. Another thing that has happened is my ears will hurt really bad when I get close to fainting. Feel as if they are going to pop. I know PAF is mostly seen in men. I am anxious to see Dr. Robertson at Vanderbilt. Getting all my tests togther. My tilt was in 2007 and it was positive. Stress test was in 2007 also and it was normal.Looking for some help, I am a wife and mother. Have 2 daughters , one has special needs and they both have health issues. Wondering if we have a genetic issue. Thanks again for the help and support. Sheila

I have noticed that more and more after eating anything or even drinking, I will get very lightheaded and end up having to go to bed cause I get so tired. My heart will beat irregulat too. I also have colonic inertia, severe constipation. Gastroparesis also. The back of head hurts including headaches. Face even goes numb at times after I eat or drink anything. It seems that when I have anything in my stomach my bp goes down. I also have hypoglycemia now. Starting to develop problems with my bladder not emptying very well. I am not bedridden but at times depend on a wheelchair cause of severe fatigue from low calorie intake and at times my legs give out on me. Have had many occasions where I will just go out after eating or drinking anything. I just become so weak,lightheaded and unable to walk. I am so glad I will be going to Vanderbilt. My cardiologist,familydr.,urologist and motiltiy dr. all fill my autonomic system is failing. My family dr. mentioned shy-dragers. It is all scary. I have been very sick now for 2 years. Down 70 pounds so far due to gastopraesis and colonic inerita. Feeding tubes have been mentioned a few times but I fighting as hard as I can to stay off them. Infections can be very serious with tubes. But if my life depended on it, I would do it. Also, I have noticed my fibromyalgia has gotten much worse. Pain at times is worse than my abdominal pain.

Anyone ever notice that first thing in the morning you are off balance?This morning it took a good hour before I could walk around without having to hold the wall.Not sure what brought this on.

I have a terrible time jumping when someone touches me. Also noise is hard for me to handle. I wish I could make my daughter understand this.She is old enough to know better but still gets angry if I am super sensitive.

I am starting to wonder if this is me. SO much failing. Just wondered if anyone here has this diagnoses. Thanks, Sheila

He has me taking , I think, generic flomax.....tamsulosin.

Thanks everyone. My GP is pretty bad. No meat at all. I basically live off of liquids and some carbs. like crackers,rice and potatos.But recently my motiltiy dr. put me on remeron and it makes me think of food not stop. he said that is why they put there GP pt.'s on remeron, makes them eat. But the eating is killing me. My gut hurts so bad, I think I have an obstruction now, and I get very lightheaded and just today just went out for about 4 hours after I ate. My BP does drop. Bloodsugar seems to go up a bit...around 120's which is high for me, I am usually around 80's and 90's.My hypoglycemia is still an issue but I have so much going on right now that I don't monitor it like I should. Thanks for the info. Just got so much going on. My bladder is losing function and the dr. put me on flomax yesterday. Today I had the most horrid dreams, not sure if that is connected. Just so tired of being sick.

Saw my urologist today for the first time. I am having some trouble emptying. The flow can be very slow, stop and go, lots of pain in my bladder and a few bladder infections.He thinks it could be interstitial cystitis. Thanks again, Sheila

Due to my motoltiy problems,gastroparsis...my stomach does not empty very well. Don't know if that is whats causing this new problem. I have noticed my heart beating irreuglar after eating. I have hypoglycemia so I check my levels and they are ok. I asked my motiltiy dr. about it today and he is not sure what could be causing this.I am thinking it is my dysautonomia. I am waiting to see Dr. Robertson at Vanderbilt, so I guess no real help til then. Thanks, Sheila

I have been refered to Dr. David Robertson at Vanderbilt. Waiting on the referral to be sent and a call from Vanderbilt. Gotta some reocrds to get togther from a few years back and the most recent. It's about a 10 hour drive for me but I have heard that Vanderbilt is the place to go. Any ideas or suggestions about my visit? Never been there before. Thanks so much, Sheila