abetterjulie

No, we rarely eat any processed stuff. I actually grind my own grains to make my own flour mix. The little that we do eat processed is stuff I have been eating for years, and the bloodwork in the past has shown I am truly GF. I have been keeping a journal of time/symptom/activity/bp/medication/food for a month now, and nothing seems to fall into a pattern. I am just going to do the elimination diet and get it over with. Today I have had brown rice and tea. Whee.

I have been gluten free for seven years. I never cheat. Ever. I don't usually feel deprived, but lately I have been just as sick as I was at the beginning of this journey. I have diarrhea two and three times a day. Nothing I eat feels good to my mouth. If I could just stop eating altogether, I would. Last night, I had had enough. I asked my DH to go buy my a regular donut. He was unhappy, but did so. Then, he and I had a massive blow-out fight. It is mostly better now, although he still doesn't seem to "get it". He says he refuses to "support" my decision to eat gluten. I just wanted him to be understanding. Anyway... I didn't have any dramatic effects from eating the gluten (other than craving it now), but I know that it can have no symptoms at first. I called the GI doc this morning and am waiting to hear back about making an appt for a gluten trial and biopsy. The last one was without gluten, and my gut was fine. I think I need one ON gluten to verify that these dietary restrictions are necessary. I am wondering if it has been the dysautonomia all along? I did initially feel better when I went off gluten, but within a year, I was starting to gradually decline again. I am wondering if the diarrhea is part of the dysautonomia? If so, is there a test to be sure or do I have to rule out all the other possibilities? I seem to do best when I don't eat, but unfortunately, that isn't an option. How do I know if I am absorbing what I need to feel better and have a functional nervous system if I am having these intestinal issues? I guess I need to ask the GI doc that as well. I guess I could do some kind of rotational diet, but it is such a ginormous pain! Thanks for listening. I just needed to vent and get a plan. I am sure many of you have food sensitivities and allergies to all kinds of different things.

I do get a burst of energy that will feel like restlessness if I don't use it. I figure that is the whole point...a better blood pressure and energy to do stuff. I also crashed badly in the beginning, but that has gotten better. I try to be sure and stay hydrated and fed, otherwise the crash is worse. I don't take three doses, so that might be part of it, too. I take mine at 10 and 2. HTH, Julie

Thanks for this article. I was able to pull some things out of it to bring up at my next appointment. He has already said he would probably start me on Mestinon at my next visit in May, but I am also going to ask him if a Nitric Oxide supplement would be beneficial. I found the part about hypocapnia contributing to cerebral vasoconstriction very interesting, as the air hunger I get is one of the worst symptoms. It is just as debilitating as the nerve pain. Thanks again!

Not sure. I have started a journal since this happened, so that if it is something triggering it, maybe I can put my finger on it. Although, I hadn't included weather, lol. Might have to add another column!

I didn't have that as part of it. It was more of a need to take such a large breath that it was tiring and painful to get enough oxygen. There wasn't a feeling of obstruction in any way. I am glad your symptom has improved with meds.

What dose benadryl do people take? Years ago I took it as a sleep aid but could only do 12.5 mg (half a dose) - makes me nervous to try it if it is going to knock me out I took 25mg, but that was all we had in a liquid cap. I knew I would be in bed with my DH right there, so I wasn't too worried to at least see if it made the air hunger better. Besides, I was miserable with the air hunger and needed to get relief somehow. I weigh 135 pounds.

That ER experience would be exactly what I was dreading. I think I am going to try to hang in there until I see the specialist again in May as long as the Benadryl keeps working.

Thanks, everybody. After doing some reading around the site, I tried a Benadryl and it worked! Within two hours of taking it, I feel able to get air normally. That makes me think I better learn more about this MCAD thing. Julie

Hi, I have had moderate to severe air hunger for the last two days. I have it even at rest. At what point do I seek professional help? My neurologist is too far away for this kind of thing. I suppose I could try and make an appt with my regular practitioner? If I went to the ER, would they even be able to help? Should I just deal with it? I mean, I don't think it is causing too much harm, other than being uncomfortable and tiring. I do occasionally get chest pain, but it is fleeting and mild. These are the symptoms that drove to seek help in the beginning. I am on Midodrine 7.5 mg twice a day. Thank you, Julie

Awesome! Thanks.

So, I got the prep papers for the sweat test I am having on Saturday. They are a little scary! I have to take extra underwear and 2 sets of washcloths/towels? I can't use any lotions, which means I won't bathe because I am so dry and miserably itchy otherwise. What are they going to do to me that I need extra underwear, haha? Seriously...what can I expect? No one has told me.

Unfortunately, I am not supposed to do the salt and water anymore, as it was causing me to swell and wasn't helping with my numbers or symptoms. I am curious about the "rebound" theory. That seems to make sense. Do others get irritable as the Midodrine starts to wear off? I find that everything, even the sound of someone clicking the tv remote, makes me hateful. I did notice while I was having my testing done that when I tilted my body while supine to one side or the other, my BP dropped even lower. I was actually surprised to see how low it stayed, even while in the supine position. I suppose that no vessel tone would be constant. I was feeling pretty good two weeks ago when I went to the gym every day. The last two weeks have been me in flare, though. I hope I eventually find a balance. I know there are some of us out there who are able to exercise and still function.

I have been taking Midodrine three times a day (when I am awake enough hours) at 2.5mg. I don't really notice much of anything, other than a pissy attitude as it is nearing time to take it again. I think that is related to feeling tired suddenly, in addition to my pain being back. Anyhoo...I have been having difficulty at night with my BP bottoming out. I have noticed it because I am logging my BP with starting the new medication. I am lying in bed, which I have done most of the day, and it starts creeping downward from sys 99 to sys 87-92 over the course of 3-4 hours. I get this tingly feeling in my fingers, I feel super tired but can't sleep because I feel like I am slightly suffocating (which is one of my low BP symptoms). Does anyone else notice the trend of a lower sys BP regardless of position at night? Mine starts to get bad around 11pm. The other night I was up until 3am because every time I laid down, I felt awful. I was SO exhausted, but couldn't fall asleep while upright. According to my documentation, I average 96/59 throughout the day, but only 89/57 at night. I am using a cool app on my android phone that does the math for me, and an Omron wrist cuff to get the readings themselves. All my readings are taken in the same sitting or reclining position. It won't even read my BP if I am standing as it is too low. Thanks to all. I really appreciate having this group to exchange ideas and compare notes.

Yes, I think that is what I needed...to not feel alone. This disease leaves me with that alienated feeling quite often. I have noticed it even more with the winter months.

It seems to be worse on my back, but I have noticed it on my left side, too. This was actually the symptom that propelled me to see the cardiologist, which got the whole ball going. I guess it is just because I am in a flair.

Hi, I have dreams where I can't breathe in my dreams, and I wake up short of breath and my heart fluttering. It takes me a bit to recover. I am normal weight and have not been told I snore. I get short of breath at times throughout the day when I am in a flare. This is the same feeling, and I am in a flare right now. I am just wondering if anyone else wakes this way.

Hi, Over the last few weeks, I am waking with swollen hands and upper body. My hands are the worst. I am not sleeping any differently, I am not walking a lot or doing anything that would cause dependent edema. I am very thirsty. I don't seem to be urinating more than normal, but the urine is clear and not frothy. My resting BP remains crap...anywhere from 75-95 systolic. HR is normal. I have gained 10 pounds, most of which I am certain is water! Should I stop with the salt? It doesn't seem to be helping, and I am wondering if it is causing the swelling. I go to see Dr. Khurana on Thursday in Baltimore for the results of my testing. Should I see my general practitioner before that to address this? Thanks in advance.

Same here. I rarely make dinner anymore.

Hi, I had been getting pain relief with Cymbalta. I started it in June, I think. Now the pain is back. Advil isn't touching it. Lying flat isn't helping. A heating pad feels good and is distracting, but doesn't get rid of it. I also noticed that despite my increased fluid intake, my urine output is down significantly. My family keeps telling me that I am "overdoing" it, but I really didn't do anything more than usual and resting has not helped. Well, it helped with the coathanger pain, but not the deep aching pain I have in my lower back, buttocks, and legs. That was the specific pain that the Cymbalta was treating. It is unrelenting and I am feeling despair. If anyone has any suggestions until I can get in with my GP (Cymbalta prescriber), I'd be grateful. I am still waiting for Dr. Khurani's office to call me with my testing dates. Thanks in advance.

It is good to know that I am not alone. I wonder what the mechanism is that causes such exhaustion?

Well, it is good to hear that I am not alone. I just can't seem to accept how disabling this disease is to my life. I struggle every day with the lack of productivity, and then when I have a day of being unable to wake up, it seems ridiculous...as it wasn't as if I had been terribly active the day before or anything!

I am new to all of this and haven't even had all my testing done yet. I have about 1-2 days a week where I sleep all day, and then that night, too. Anyone else have this level of exhaustion? I feel like I am getting worse, and that scares me.

Had to smile at this as I had the same thought process about being a banker...actually about every job I see now where they are sitting for any length of time. I am trying to start a home business based around my knitting. It is slow going, but I feel like I have to try. I hope you find something that satisfies. It is amazing how much of my worth is/was tied up in what I "do". I am still learning to let go of that perspective. Some days are better than others.

I saw this article today and was curious if anyone here has this problem with sleep. http://www.medpagetoday.com/Neurology/SleepDisorders/22187?utm_content=GroupCL&utm_medium=email&impressionId=1284621851764&utm_campaign=DailyHeadlines&utm_source=mSpoke&userid=228836 I have thought about asking for a sleep study. I might do that now that I see a connection.