futurehope

It sounds really great! Hope everything works out well for you.

Well, folks, you have all been so great with all your support and suggestions, but as of right now, I have decided NOT to go. To tell you the truth, it would not be much fun at all, for me, that is. If I am not feeling well, and I'm feeling nauseated (from being vertical too long) and very headachy, I am not having any fun. Now, of course, it will not be much fun here alone with my chihuahua while everyone else is at the wedding, but it is easier to be in my own home and not feel well than to be looking at my wristwatch wondering when it will all end. I've come to accept that I cannot do the things I used to do but I still hold out hope that it could change at any moment. I haven't lost hope for the future (check out my name ). And my philosophy is that I do not want to waste my time wondering why people cannot sympathize or understand my predicament. It serves no purpose. I know what I can or cannot do and I'll go on from there. This experience of having POTS is molding my character. I'm more understanding and compassionate than I used to be, and more appreciative of everything. I'm actually learning to be a little less self centered as well, since I'm more often called upon to "look over" feeling poorly when I'm trying to be kind to someone else. So, in a strange kind of way, having this ailment has worked some good in my life.

I'm not a doctor, but here are some ideas. Check for any thyroid abnormalities, either over or under functioning. Some people on this forum have Hashimoto's thyroiditis but I do not know how you test for this. Have a cosyntropin stimulation test to test for adrenal function. I passed that okay, but came out somewhat low on an insulin tolerance test. There is also a 2 hr post prandial blood sugar study (post prandial means after you've eaten) that can be done. SAY to the doctor that you are interested in finding out any potential cause(s) for your ailment and that is why you are seeing him. You might want to mention what I said or any other tests others might suggest or that this DINET information website has suggested.

Mary, You certainly are correct in suggesting my family read up on ANS disorders. My mother is fairly tolerant. She's the one who saw an article about a Dysautonomia/MVP support group in the Northern Va. area and first sent me the reference from the newspaper - which started me on the track to diagnosis. My husband, on the other hand, will not even read this thread which I printed off and put right in front of him. He just has NO interest whatsoever. Won't even go in with me to talk to a doctor. He must have known there was a lot of new info he could learn from reading this thread, so when he saw how much I was pushing him to read a printout from this forum, he relented and said, "okay, we won't take the bus. I'll drive into the city if I have to." Unfortunately for me, my husband's motto is, "Buck up and keep quiet about your problems. I don't want to hear them." He also has a side of him that thinks if I say anything about my physical problems, I am being manipulative. So I TRY to keep quiet since he doesn't want to hear ANYTHING to do with the human body at all. (That's another thread, isn't it?) I do appreciate everyone here on the forum because at least we can relate to each other. When I try to remember what it was like when I was somewhat "able-bodied", I'm trying to recall my personal reaction to people with hidden ailments? To tell you the truth, I don't think some able-bodied people WANT to be around disabled people, especially ones that complain. It just reminds them that it could happen to them, and they would just as soon avoid you and the whole situation. That's my take on it. You have to have built in a certain compassion on others in order to relate to a sick person. That's why I always felt that nurses (some of them, anyway) were angels. Unfortunately, not everyone has the compassion of nurses.

Thanks for all the info, Nina. It actually sounds to me that the best bet is to get there a day early and leave the car at the hotel (with their parking service) and take a taxi to the wedding.

Nina, I like some of your ideas. The wedding is at 11:30AM, so obviously, I would be going on the train all dressed up. Where does the "Princeton Junction" train let you off? Is it the Port Authority terminal or Grand Central or what? I would have to get from the terminal to the wedding on 23rd street. I'm thinking maybe I could find a cheaper hotel just across the Hudson river from Manhattan (the hotels my niece suggested are $250/night - too much) and drive in that morning for the wedding. I need to check if there's parking at the wedding place? Of course, at this moment, I still have to do my "experiment" to see if I can withstand the 3 1/2 hour car trip north from Baltimore. If not, I stay home.

Veryblue, What were your symptoms that told you something was wrong? Or was your symptom just that you stopped being your wild and crazy self?

EM, I've come up with an idea for riding in a car for more than 30 minutes that I'll have to try out. The trip all the way to the hotel (forget the bus, I'll NEVER do that) could be about 4 hours. Anyway, my new idea is I bought two cheap regular sleeping pillows and I'm going to put one of them UNDER me in the car to raise up my hips. The other will go behind my head, and my legs will be up on the dash. I will recline the seat until I'm confortable. Since the pillows are cheap and new, they are fairly fluffy. In this position, I seem to be more in the position that I tend to stay in at home. The normal car seat keeps my hips too far below my heart to be any good, so I'll be checking out my new idea to see if I stay somewhat okay. I'll let you know. I will have to go a fairly lengthy trip (over 25 miles) to try it out for real. You cannot believe what I've putting myself through over this. I'm supposed to let the bride know how many are coming by Sept 1st. Of course, most of my small family is going so I'd remain home alone if I stayed home. I think I change my mind about going to this wedding about 10 times/day. And you would think I would be happy and excited. Instead, I'm stressing!

I'm very happy for you. I, too, found an endocrinologist who is willing to work with me and has found some of his POTS patients deficient in some hormones. Also, if the pituitary is malfunctioning (which my endo specializes in), then, the hormones of the glands that the pituitary affects may show deficiencies. See: http://www.umm.edu/endocrin/hypopit.htm P.S. Maybe you could change your name from "VERY BLUE" to something else?

I'm feeling really alone right now because my husband and mother do not understand how difficult it is for me to do "normal" things. I think I've spoiled them because they see me doing things and I don't walk around telling them every minute how bad I feel. Case in point, I live in Baltimore. I've been invited to my niece's wedding in NYC. Sounds great, right? Well, for one thing, I need to GET to NYC. No problem there. My husband drives. Right? Wrong. I feel terrible even as a passenger in a car because that involves sitting - even the reclining position does not help. There's something about a car?! Anyway, say I decided to go. Upon arrival I'd be doing pretty dismally. Then, my husband wants to leave the car in Princeton, NJ (at his brother's house) and pick up a bus across the street and take the (I assume, fairly lengthy) ride into Manhattan. That would definitely do me in. Then when we got there, we'd need a cab, go to a hotel, attend the wedding, etc, etc, I'm reeling even THINKING about it. Can anyone here relate to what I'm saying? Or am I the only one so debilitated by this problem? Maybe I'm not pushing myself hard enough? Should I go anyway even though I would feel so bad that I couldn't even explain it in words? What do you think? Maybe I just can't stand feeling badly or being in too much pain, or pretending I'm fine when I feel like croaking. What do you think?

JLB, Before you made the appointment with this neurologist, did you ask his receptionist if he treats patients with, say neurally mediated hypotension, or neurocardiogenic syncope, or whatever dysautonomia you wish to ask about? I've found that if you ask this BEFORE you make the appointment, you at least have an idea of what the doctor has seen before in his practice. If the receptionist then says, "yes", you can say (if it is true) that you do not have a diagnosis for sure yet but are seeing him to help get a diagnosis. In some cases, the receptionist or doctor will tell you ahead of time that they do not deal with "whatever" you said, in which case you ask, "Can you refer me to someone who DOES deal with these issues? Thank you." It is helpful to bring to the doctor's appointment a written list of the prescriptions you are taking, the dose, what they are for and who prescribed them, a list of medicines you have tried but that do not work for you, and list of questions you may have that you would like to try and get answers to. (You may want to have a copy so you can give him one, while you are referring to your own copy.) You also want to give him a summary of your current condition including blood pressure/HR readings you may have taken, the day/time you took the readings, and what symptoms you were experiencing. You can then give your notes to the doctor who can then put them in your chart. And, most of all, what symptom or what question is THE most important one for you to try and find an answer to because the doctor cannot do everything and YOU have to decide what YOU want out of the visit. I find that the more you put into your visit by preparing ahead of time, the more you will get out of it, and the more seriously the doctor will view you and your wish to get better. They are more willing to work with you if you have shown how serious you are about getting help. When I've come into the doctor's office prepared as I've stated above, I've always been taken seriously.

For me, a more pertinent question would have been, did you have average ENDURANCE? I was able to run or do things but my stamina was not average and I seemed to require more of a recuperation period from normal life than other people did. That did not stop me from living a normal life up until 2 years ago. What I am saying is, if I had the beginning of POTS from, say age 11 (change of life) up until recently being diagnosed at 51 years old, the effects did not impact me in any great way. But, looking back on everything, my stamina was below average and I seemed to require more sleep. I have mentioned this to some of my current physicians and to Dr. Goldstein who does the NIH study I'm in. There may be something to it. Someday they'll piece it all together.

Yeah!!!!! Congratulations!

That freaks me out. I am very cautious about mentioning names on this forum, but to think he might have gotten an email forwarded from someone else... That just freaks me out!

Gayla, People do not understand what we mean when we say we are tired. We do not have another word in this language to describe what we mean when we say we're tired. Basically, we mean "we are unable to function". It happened to me when I had company. I had to lay down right there in front of them because my husband refused to allow me to go upstairs since it was the beginning of the visit. Luckily, I recovered enough to make it through the rest of the evening, but the episode doesn't exactly make me excited about wanting to entertain.

Edntx, Please list the ingredients, the pharmaceutical company, the dosage schedule (if there is one), possible side effects and current recommended uses. If there is a website with this info, direct me. Also, how long has this been on the market offered to the public and is there any research as to its safety or uses? Thank you

Briarrose, Julia, What does "orphan list" mean? What do you mean that Pres. Bush has taken dysautonomia off the orphan list? What are the repercussions of doing this? Thanks.

Welcome to the forum! I'm sure you'll feel like you are making new friends. I also live in Maryland, in Baltimore County. I was wondering, since your name is myladystears whether you live in "My Lady's Manor" by any chance? And do you ride horses? I don't, but I figured you did. Anyway, welcome to the forum!

I understand just what you are saying Hayley. When I used to feel at my worst, and nobody was listening or helping, I used to fantasize that my tombstone would read: "I told you I was sick." I figured that as they were looking at my tombstone, they (whoever "they" was) would finally believe me. Of course, I figured I was probably dying and nobody knew it or believed me. I do not think I'm dying anymore and I have a diagnosis but I can certainly empathize. The worst part of it for me was that it became harder and harder for me to continue working and I had nothing to explain why this was so. Almost the minute I got a diagnosis, I soon left my job due to inability to work and filed for social security disability. (That's another story.) I hadn't even adjusted yet in my own mind to what was wrong with me, but I knew I was unable to work. Hang in there. There are better times ahead. Nothing stays the same.

I had run into the term "neurally mediated hypotension" somewhere. Maybe it was in an article. I can't remember. Anyway, my symptoms were strange enough to not fit into the normal criterion. Nor did any usual testing reveal anything. So, on a hunch, I figured I had something like NMH and called Johns Hopkins (where I live in Baltimore) and found a neurologist who treats NMH. (I knew they had researched NMH at Hopkins.) When making the appointment, I asked the secretary "Does he treat NMH?" even though I had no idea if I had it or not. She said ,"yes" and I made the appointment all the while wondering if it was a big mistake or a big waste of money and time. I went to the appointment still thinking I had made a mistake, and within 10 minutes of taking my history, the neurologist said, "I think I know what's wrong with you. I think you have POTS. But I will have to do some testing to confirm it." He did a TTT and some other things, and he was right. It was a MAJOR relief to know that the stuff I had been experiencing had a name.

First of all, I have a friend with fibro and she is having much difficulty with shortness of breath. She found out that sometimes fibromylagia causes this. She had had a complete workup as well to try and figure this symptom out, and the drs. could not. Also, I can relate to the being so weak that you feel like you're dying. It feels like a really scary attack to me. I do have a diagnosis of POTS. But my take on it is that my autonomic nervous system is out of whack and consequently many different body systems can be affected at different times. I went to an endocrinologist about my extreme fatigue and "attacks" of feeling like I'm dying. To make a long story short, he did an Insulin Tolerance Test on me and found that my adrenals, though functioning, react poorly to stress (in the case of the test, the stress is extremely low blood sugar). He tried me on supplemental adrenal hormone. (Two other POTS patients of his had improvement with this treatment.) Unfortunately, I could not continue to take the hormone due to the severe gastrointestinal symptoms it caused in me. If I were you, I would consider trying to find some underlying causes to your symptoms realizing that if your ANS is out of whack, almost any system can be affected. Maybe you would end of being a candidate for adrenal hormone and it could help you? Do you have a cardiologist or neurologist who is well versed in POTS at this time? Maybe you could find one in your area? That is a start. I wish you the best and hope you can find someone who can begin helping you with your symptoms.

The T.V. drives me crazy because of the unpredictability of LOUD commercials coming on, usually when I'm in another room and can't get in there to mute them. My husband always has to have the T.V. on and is aware of my problem. He knows that when the commercials come on I will be begging him to mute them. Same goes for radio and the movie theatre. If I do go to a movie, I will stuff my ears with napkins or toilet paper. I do not care what I look like. It's dark in there anyway. The noise HURTS. Seems I've read somewhere that we're deficient in a vitamin? I just can't remember which one - probably a B vitamin?!

I'm no doctor but I personally think my stuffy nose is related to the autonomic difficulties as well as the allergies I have. If I remember correctly, for some of us the veins in our legs become distended because blood pools there. I happen to think that the same kind of thing occurs in the capillaries in my nose (though my allergy doctor does not agree with me). I think the capillaries in my nose have a tendancy, for me anyway, to become more distended than normal, especially if there is low barometric pressure outside (rainy). I use Breathe-rite nasal strips every night to keep my nose open. It works somewhat and I don't do well with pills. If my heart is not doing badly with racing or anything, I take 1/2 of a prescription pill that my allergist gave me, guafenesin with phenylephrine. But the phenylephrine can definitely raise the heartrate, so I rarely take the above. I'll take the pill only when I'm totally desperate. I also sleep on a wedge incline with my pillows on top of the wedge which helps keep the nasal passages open more. Besides that, if you have allergies, either to things or foods, try to figure out your triggers and avoid them. Easier said than done. There's a whole long spiel I could go into, but it's too lengthy and boring to relate here and I can't honestly say that my stuffy nose improves from any one thing I do. And, BTW, I do NOT have sinus infections, just a stuffy nose problem. I can relate to having this problem. (Maybe we can find a forum on which they discuss stuffy noses, or allergies, and what to do about it?)

Lorrell, What is the dosage of the Cerefolin you're taking and how often per day? Is insurance covering it? I will be mentioning the drug to my neuro. Thanks.

khusonwv, My thoughts and prayers are with you. Remember, you are also representing other people who have POTS in the sense that the ALJ will be able to see with his own eyes what POTS means and what the effects are. You are doing something really important and necessary and you would not forgive yourself if you hadn't tried. You know the truth about your ability to work and you are there to represent the truth. I know it is a very nervewracking experience and a lot depends on the judge (so my lawyer told me). Will you have a lawyer with you? Anyway, let me know how it goes. No matter what, it is important that you represent the truth and you are doing a very worthwhile thing both for you and for everyone else in the future who applies. I appreciate your time and energy and know how nervous you must be, but, hang in there and let us all know what the outcome is.