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Morgan, my bp was 90/60 after the colonoscopy and that was after receiving 2 large bags of fluids at the hospital. I easily become hypovolemic and I am wondering if that has been a problem for you in the past? I would lean toward hypovolemia because of the diarrhea after the procedure and the fact that when you feel like crap you are probably not getting sufficient fluids. I know the a day of diarrhea can take 3 or 4 days of aggressive hydration for me so I can't imagine this going on for 4 days. I agree with others that electrolyte drink or will your doctor give you orders for IV? When I get behind on fluids, nothing I can do at home works as well as getting fluids through IV. hope you are feeling better soon.

Amy, it is strange how once the ANS is off balance how many things in our bodies go wrong. I have to avoid all meats, dairy, milk, chocolate in addition to gluten and finding foods that I can eat gets frustrating. I think when I stopped gluten that I noticed an improvement in a few weeks time so I hope that you will too. I wasn't tested either but since g/f has been discussed here many times, I thought I would give it a try and it has helped so I am sticking with it. good luck!

merrill, thanks so much for getting an update on our emily. i am so sorry to hear that she is having so much difficulty in recovering from her surgery. A card campaign should cheer her up!

Nina, here is a funny story. Last year you wrote that Cheetos were ok for a g/f diet and when I read that, I thought I had won the lottery!! Since I was a kid, cheetos have been one of my all time favorites. So, I rushed out THAT day and bought the largest bag of cheetos I could find and then went home and proceeded to eat the bag in 2 days. WELL....while, cheetos may be g/f, they have a whole lot of other stuff that is soooo bad for me and let's just say I got really sick!! You would think that incident would cure me but NO. Several times I have tried them again, buying just one of the small kids lunch size bags. I never get away with it...so sadly, I have had to swear off of them! The lesson is don't forget to use your common sense (LOL)

Amy, if you read the thread Nina posted that I started last year, you will have read my struggle with finding foods that my body can handle which I continue today. I have found, however, that gluten free is good for me. Mr. Ritts bakery (link from Nina) is FANTASTIC and Paul is the nicest guy to work with....although depending on where you live, this is an expensive route to go due to shipping. But, since there is so little choice of what agrees with me, I look at the bread I order as a necessity, not a luxury (yes, a little rationalization going on there!!) Also, the Tinayada rice pasta is wonderful and my husband loves the fettucini and he doesn't have any eating challenges. It has a lot of carbs so if you need a fix, it should do the trick!! The other thing that I love is Blue Diamond Nut Thin Crackers which the nutritionist recommended. My favorite is the almond crackers and my "normal" friends really like them as well. They are great with almond or peanut butter. I get both items at Whole Foods and can highly recommend. This past year I have tried to incorporate more organic foods into my diet. Don't have any proof that helps but highly suggested by the nutritionist. Nina, that is interesting about the oatmeal being OK. I have avoided it thinking it was on the forbidden list. Maybe I should give it another try. I love oatmeal.

Hi Ginger, you are really being put through the mill at Mayo....is there a test they haven't done on you?? Just kidding but very impressed that you are getting such thorough attention and hopefully in the end, a comprehensive treatment plan. Glad you got to go home and see the kids! good luck at your next visit.

Hi Morgan, I had noticed your absence and sorry to hear you are in a bad place right now. My neurologist suggested I take provigil several years ago for fatigue but when I read the drug information sheet there was something that caused me to decide not to try it (I think maybe it was that people with MVP should not take -- can't remember). Therefore, I didn't. Hopefully someone with experience with provigil will post but I just wanted to say HI and hope you start to feel some relieve with or without the drug.

Julia, it is good to hear from you and know that you are home from the hospital. How amazing that they would leave you so long sitting in the wheelchair! It is a reminder that so little in known in the medical community about the delicate nature of these type conditions. I am really sorry that you had to go through all that. Being alone must be frustrating for you. Is there any type of healthcare home visits that your doctor could order for you? If not, do you have friends or family that could stay with you or you with them while your husband is at work? This will be really important while you recuperate from surgery. I don't have experience with the drugs you mentioned but believe others here do so hopefully you can get some feedback. Sounds like not feeling like your right arm is there is a serious effect and your doctor who prescribed should be consulted immediately. The fact that you say you want to visit Dr. Mathias says that you have confidence in him and perhaps seeing him again would be helpful. I think I would take his travel concerns and find out if there is a way to get there without causing more problems, maybe even staying overnight if that would help you. It is good that your husband is able to take off and go with you. I am so sorry that you are going through the mill again and hope that you will be feeling some improvement soon.

Merrill glad to hear you are feeling much better. Now if we can just get Mary over the strep throat. Take care you 2!

Hi Emily, I was looking at the calendar this morning and realize you are coming up on your 1 month anniversary! I hope that your recovery, which sounds like it got off to a rocky start, is progressing smoothly now. Just wanted you to know you are missed and we look forward to your return. Take care of yourself!

Hi Lynna, Welcome to the forum. I am very sorry that your son is so ill and can appreciate the frustration that you are feeling. I had muscle weakness and balance problems at the onset of POTS and would get dizzy standing up but never passed out. I think instinctively I knew to sit down. It was a year after the onset of symptoms before I received a diagnosis. I live in Texas also but do not have a POTS specialist. I do have a pretty good internist thankfully. I think you are referring to the Southwestern Medical group in Dallas. I have not been there so I do not know personally about the staff but I have heard they have doctors familiar with dysautonomia. Good luck to you and your son and if there is anything I can help with please let me know. If you are in Houston I am just down the road a little ways and would be glad to speak with you.

Runnergirl, I always enjoy reading your posts and sharing your accomplishments. Your encouragement is always welcome!

An EMG is not that pleasant but I would have again if it would help. I had been having weakness and numb-like feelings in my legs and that is why I was tested. Good luck with your test.

Hi Joyce, I just wanted to express my condolences for your loss. I am not familiar with the meds you mentioned but hope that you can find time to thoroughly rest and get back to your baseline.

Tearose, I am sure you will make those new jeans and thanks for starting this thread. It is so true that when we see someone else who is trying some exercise, even modest amounts, it motivates us to get moving, doesn't it? It is also nice to have Kristin as one of our official been-there-done-that cheerleaders! My personal goal is to build up endurance so I can enjoy my first real vacation in almost 5 years this summer!!

Martha, I have had a frozen shoulder several times and know how painful that can be but your situation sounds worse and I am so sorry for your pain. Do you have a date yet for your surgery? Hopefully, knowing you will have relief from this horrible pain will offset the concerns about the surgery itself. Beat of luck to you. Keep us posted on how you are doing.

It is good to see so many getting motivated! Sunday, I dusted off my recumbent bike and rode for 10 minutes! Today, I decided to walk to the end of my driveway. I was alarmed when I heard and saw our neighborhood hawk let out a warning cry to his mate who came rushing back to what must be a nest. So, now I must brave the wildlife to take a walk!! Tearose and Merrill, do I get an extra cookie for exercising in hazardous conditions????

Nina, first things first....it is REALLY great to hear the smile back in your spirit so I know you are feeling better. Wonderful! What a considerate letter you received from your neurologist. I think I would want to get the first set of films and have your neuro or a radiologist he trust, review both sets. That's just me...curiosity and all! But the important thing is that the treatment is helping you. btw, I have a recumbent bike at home and like it. I got on it the first time since before the holidays now that Merrill and Tearose are out to whip us all into shape (LOL). Glad you are better. Now, DoN'T overdue!!

Merrill, so sorry you are having GI problems. I have IBS but don't often have the runs. If I do, it is once or twice in the morning and then it is over. I don't feel ill like you describe. So maybe a virus? I know others have said let it run its course but one caution I would add is if you are hypovolemic. I am and after more than 4-6 bathroom runs I find it almost impossible to get enough fluids to quickly rehydrate. It can take days and during that time I am very weak. If you have not been able to get in enough fluids, don't hesitate to ask for IV fluids. If you get cramping there is a medicine you can take to relieve the spasms. Feel better soon.

Katherine, interesting you bring this up at this time. We are talking about going to Durango (by car) for several weeks this summer on vacation to avoid the heat here at home. The altitude in Durango is not as high as where you are going but I think the idea of going slowly and letting our delicate systems make the adjustments as best they can is really good advice.

Kristin, thanks for sharing your success story and encouraging others. Good luck in your studies!

Mary, hope you are feeling better soon with the antibiotics.

Tearose, thanks for being so generous and sharing your plan with all of us. Clearly you put a lot of thought into what you want to do...very impressive. I was shocked/thrilled to see that you can do an hour on the treadmill..really, that is a long time. Considering your visit in the potshole not that long ago I am really pleased for you. Makes me think I need to get back up and DO something! I am one of the fortunate ones who doesn't have to worry about weight but I need to get my endurance back up there. I hope you come up with somewhere nice to go for your weekend. A little travel is my personal goal for this year but to do so requires me to build up some endurance for the car ride so I don't collapse on arrival. Anyway, tearose, keep up the good work! 28% down to 23% in a relatively short time is WONDERFUL!

Gena, hope your day will go alright for you. I, too, have several sleep patterns. I go weeks sleeping well and then other times where it takes more than 2 hours to fall asleep. I do all the tricks but I am still awake. I tend to be the person that wants to arrive early so I can take that deep breath, sit in the car, and let my ANS calm down a bit. When I am going somewhere it is a big deal and I am thrilled since most of my days are spent in my house. As a reult of the excitement, the adrenaline flows, my bp shoots up and I generally feel better. The down side is that when the adrenaline leaves, I am in trouble and the next day is most unpleasant. There is no way I could do as much as you are doing today so I am impressed! But, I have learned that for me, if I really don't feel up to doing something, I DON'T. It is hard to give ourselves permission to do this but good friends really do understand. Maybe if you find yourself in this type situation in the future you could call your friend with the shower and plan a day when just the 2 of you could get together and have a private party honoring her. She probably would understand and enjoy. Good luck today and tonight I predict you will sleep deeply after all your activity. REST well Gena!

Ling, I am really glad that you found someone who is willing to work with you. I haven't tried pilates, but it is encouraging to know that you have had success with it. Are you leaving your meds because of problems or just a desire to manage your condition differently? good luck whatever the reason.