futurehope

My non-medical answer is, yes, gut dysmotility can be a product of a malfunctioning ANS. For your information, if we have issues with gut motility, we may also have Small Intestine Bacterial Overgrowth, which can cause cramping and diarrhea. You can be tested for this by a GI doc and the test is a hydrogen breath test. I say all the above because when I reminded my GI doctor of my autonomic nervous system issues, he put two and two together and had me tested for SIBO. My take on it is you can treat the SIBO short term with antibiotics, but since the gut dysmotility is permanent (as far as I know), the GI problems can and will resurface.

When I was evaluated at Johns Hopkins "dizzy clinic" back in '96, they gave we a long questionnaire to fill in, and many of the questions dealt with sensations such as was described in the OP. Obviously, the answers meant something to the ENT experts who dealt with dizziness complaints.

Thanks so much. Do you have any clue why rubbing of eyes will go into a systemic reaction? Is it mast cells? I realize you are no doctor so if you never heard the doctor say anything, you don't have to respond.

I have an allergy problem (or is it a mast cell problem?)in which my eyes will itch, I rub them (a lot), then an entire uncomfortable chain of events ensues: my nose runs I sneeze a lot my nose get extremely stuffy which can last up to 2 days I'm miserable and unable to sleep until things settle down I'm seeing my PCP today and I don't know if anyone on here knows or experiences what I am describing? I take an additional atarax antihistamine when this happens. The additional pill makes me really fatigued (worse than normal), so the entire episode is an extreme nuisance. If you have links to an allergy forum or some place I can get answers, I'd appreciate it. Thanks in advance.

Debbie, I'm glad Midodrine is working. But I beg you to try to get the first class seats to go back on. You are not "recovered":you are being "managed". Thirty hours is way too long to be vertical. I'm very concerned about you. I'm saying this from my own experience of 9 hours from the US to the UK and back. The reclining seats are a life saver. If necessary, have the doctor's write a note. Also, try sitting a few hours way before you go back to see a how you do beforehand. This can be a major stress. Thirty hours is difficult if your body is working normally. Please consider fighting this. That's my opinion.

Sitting makes me sick. I don't know if my BP is dropping or not, but it feels like the blood is going down, not up, kind of like I am in shock. Lately, I notice that apart from feeling bad when sitting, I have the reaction of feeling "exhausted" as well. It's all part of the fact that my body does not work right.

Persephone, Try not to worry. You'll be fine! I'm glad Virgin Atlantic was accomodating. You can read my post on my successful flight across the US to the UK and back. I DID manage to get ENVOY class (upgrade seating) on the way back and it made a tremendous difference. I will be going on another airplane ride across the US this coming Friday. My prior success was a motivator. I have requested the somewhat upgraded seats (forgot the terminology that United uses) that recline more and the bulkhead. I will have a doctor's note with me. You'll do fine. Have a great time!

My uneducated opinion is that severe pain can do that to your blood pressure. The Aumentin didn't have the necessary effect. Obviously, you need additional treatment. Feel better soon and let me know how you are doing, okay?

For years, I noticed I had less stamina than other people. My heartrate tended to be on the high side. Doctors attributed that to my thyroid medication. Fast forward to post-menopause. I became increasingly unwell, dizzy, severely fatigued. I looked up my symptoms. My Mom gave me a newspaper article on mitral valve prolapse and some of my symptoms matched. I did some research and read about neurally mediated hypotension. I call up Hopkins and asked their referral service for a neurologist who treats neurally mediated hypotension (which I thought I might have after my research). The name of a doctor that I was given was the doctor I still see. He listened to me explain my symptoms and said, "I think you may have POTS. I will need to test you and see". Voila!

Hi, y'all... Has Shimoda answered back as to how the appointment was? I am not that far from Media, PA. I'm in Maryland and am considering making an appointment. Is Dr. Goodkin's specialty cardiology? I like my present doctor, His specialty is neurology and I wouldn't mind getting a second opinion. Thanks in advance.

I can walk, but if I walk too much for me (as when I was sight-seeing in London), I get like I can't put one foot in front of another because I get exhausted. I can actually do it, but I feel exhausted like I'm running on empty, low on fuel. Maybe I am? Maybe I'm low on blood sugar or something? Walking is preferable to sitting or standing, but too much walking for me means I need to recover. To recover, I lay down and rest.

Firewatcher, You sound reality based. That's always a good place to be. Best wishes and success on your new path.

If I followed my blood pressure and heartrate fluctuations daily, I would drive myself into anxiety. Why? Because my readings fluctuate all the time depending on.......you name it. What to do? I don't take readings of my blood pressure and heartrate very often and I don't worry about the fluctuations. Now, I can say I don't worry about the fluctuations because I've had enough testing done so that I am secure that I am doing all I can do and nothing serious is going on. Now, obviously, if something is out of the ordinary for me, I'll take my readings. If I have autonomic dysfunction, my understanding of the term dysfunction is that I have blood pressure and heartrate adjustment abnormalities. I don't expect good readings. Are you striving for something that is unattainable with your present autonomic dysfunction? What exactly are you hoping to achieve? If you figure out how to somehow normalize everything......great! Let us know. But in reality many of us on this forum have fluctuations and we all learn that this is our "new normal". Do you see what I'm saying? Do you really need to be anxious about all this? Could you possibly lower your expectations? To do this, you will have to feel secure that all medical helps in your case have been tried, and that all pertinent testing has been done to rule out possible causes of symptoms. I'm sorry, but dysautonomia stinks. I agree. I hope you feel better soon. I don't mean to minimize your particular symptoms and I am aware that they could be serious. But, at the same time, I wanted to remind you that sometimes our expectations do not match with what our malfunctioning bodies' can do. Just a thought.

I think it is a good idea to rule out other possibilities for symptoms. I've had this test done.

Valliali, I'm so sorry you had to experience this. Just remember, our bodies are not functioning normally, so even if you exercise, pay attention to symptoms and DON'T PUSH through. Stop. Recover. Sometimes, in the middle of feeling okay, we forget that our bodies have problems. So, my suggestion would be not to discontinue exercising, but to moderate your workout. It seems obvious to me that you were trying to do too much. Unfortunately, some days we can handle more than others. If you are coming down with something, or the outdoor heat/humidity changes, or if there are stressors such as lack of sleep, dehydration......all of these and more can adversely affect us. We get more affected that normal people, in my opinion. The inconsistancy of our symptoms makes it difficult to adjust. Let us know how you are doing, okay?

Cat Lady, In most places the seat cane was no problem. They did want to take it from me at Buckingham Palace but I told them I cannot stand and I needed it and they let me keep it with me. Many touristy places tend to have seats somewhere, but just in case, I had it with me and used it very frequently. Even the tour guide on our tour took hers with her and used it when talking to us sometimes.

To make a long story short: bulk head seating was somewhat helpful in that after the 4th hour, I raised my legs (without shoes on) straight up and slouched down in my seat as far as I could. I truly contemplated leaving my seat and laying in the aisle because I felt so poorly. Somehow, I survived, but was very uncomfortable. I asked for the bulkhead seat 24 hours in advance due to health. I did not require a doctor's note for USAirways. envoy (or first class) seating - I managed to get an upgrade to envoy class for the return flight. There were not any upgrade seats available for the original flight. The airline determines how many seats are available for upgrade and frequent flyers with mucho miles get first dibs. Envoy seating is the way to go. If only I were rich. With this seating, you can recline and feel much better. I will try to get this if I can afford it. Wore support hose during the flight and during sightseeing. I am not sure if this helped, but I do it anyway. Usually, I don't wear them. Drank, drank, drank and carried water everywhere. I LOVE my new seat cane. It went everywhere I did and I used it extensively. Thanks to suggesting it:I saw the idea on another post. My irritable bowel worsened after the trip because of my poor self-control. I basically ate everything the airline handed to me in first class. Put food in front of me and I'm a sucker. I'll eat it. Trouble is, I normally do not eat many of the foods I was given. But, oh what fun it is to eat. So, I expected my bowels to act up. They did. Jet lag doesn't help the situation. I despised the customs at the Manchester UK airport. I didn't have my seat cane yet. Not sure the luggage had been picked up? And they expected me to stand and wait in line to see the official. At these instances, I'll wing it. I'll let my husband stand while I sit and wait somewhere, anywhere. I did not see accomodation for disabled people, but, I didn't ask either. I fatigued faster then my normal relatives, but that is to be expected. I pretty much did everything using my own judgement as to how to manage. Getting there on an overnight 9hr flight was tough. I did fit in a 2 1/2 hour nap during the day, then conked out cold that night. By next day, I was on UK time. The second day I felt rough but expected it. For the entire trip I planned ahead to allow for some down time for recovery after the flight and after sightseeing. All in all, I prefer being home in my own surroundings where I know where everything is and I'm not stressed out about stuff. I prefer consistancy and regularity so traveling is not for me now that I'm disabled, but...... my husband is not disabled and he likes to do things and go places. So, I do what I can. I manage. I pray.

I made it and no medical incidents! Yay!!!!

How I Handle Doctor Visits: I only show previous results of tests. Doctors prefer evidence. I pick one or two symptoms I would like investigated and I explain why. Maybe I want to explain my severe fatigue, or maybe the symptom is new? I mention symptoms that are more in keeping with the doctor's area of expertise, unless he is a primary care physician, of course. I find that if too much is mentioned, the eyes of the doctor gloss over, unless the doctor is an expert in this condition and is interested. Anyhow, the above way of handling things is not ideal, but I find it necessary in order to keep the doctor from fear (because he has no clue and is overwhelmed) and to keep the doctor from thinking I am a hypochondriac. It also helps to explain the deterioration of my health. I mention how "I used to be". I've been treated this way by my new primary care physician. I posted about it. But I straightened him out. I'm sorry you had to encounter this "catch all" diagnosis of hypochondria. I'm sure you are searching for answers as we all are.

The flight caused symptoms similar to altitude sickness for me. I NEED to recline, or else, and I don't mean just a slight recline, but an all out recline. It was difficult having the altitude sickness headache. Hopefully, I'll get a first class seat back or, at minimum, the bulkhead seat.

Cordelia, What do you mean the agents gave you the upgrade if they were able? I had called for DAYS in advance of my trip, even twice the last day. I could only get an upgrade 24 hours prior to flight time, IF THEY HAD ONE. They had several a few days prior, and then nothing within the 24 hour period of flight departure, so I got nothing. But, if I had PAID for envoy class (business class, first class) from the beginning, I would have had them. Are you on a frequent flyer program or something? Thanks in advance. BTW, I may succumb and pay for envoy seating during the return flight. I do not want to feel that miserable if I can help it. I really cannot afford to buy those tickets outright, but I'll have to do something.

I made it to the UK on an 8 hour overnight flight from Philadelphia, PA. It wasn't easy, I'll admit. I was sitting at the bulkhead (yeah), but at about 5 hours into the flight, I wanted to lay down so bad.... I actually put my feet straight up onto the bulkhead from my seat and slouched down into my seat as far as I could because I was feeling miserable, the no-oxygen in the brain headache. But I'm here, with all my medications. Not for the faint-hearted but am glad I did it. BTW, I may succomb and pay additional for the reclining first-class seats, because it was difficult being that miserable. OTOH, the return flight is during the day, not overnight, and, therefore, my be less stressful.

While we are on the subject....... I just looked at my 2000 results to B. Burgdorferi. It was positive, but the western blot did not produce positive in the necessary bands? Could I have chronic lyme? I'm going to ask my doctor to retest as well.

He said that some people only need to increase respiration rate a very little bit to screw up their carbon dioxide levels enough to mess up their blood flow to the brain and produce all the symptoms I feel: fatigue, brain fog, dizziness, and fainting. He explained the syncope as totally an effect of hyperventilation, which I have not percieved. Masumeh, you mentioned that when exercising, you have to stop and breath into your hands and then you can resume. Obviously, normal people do not have to do this. Well, everyone breathes more rapidly during exercise. Is it possible that you are more sensitive to changes in CO2 levels in the blood than the average person? Maybe it is not a matter of the breathing rate, but a sensitivity to changes to CO2 level? Also, as time goes on, will you have to do the "breathing into the hands" less because you are retraining your brain? Just a thought. Maybe we all have a form of this? Sensitivity to changes. I know I'm sensitive to changes of any kind in anything.

I am curious. Is breathing 4 - 6 times/minute the normal rate? I have no idea. Or is this deliberately slowing it down? I breathe about 14 times/minute at rest.