shelby

Bria, There isn't a set time that I get these in the month. I have them all the time. Well not all the time or I would have gone crazy by now. If you don't mind me asking what would set these off at a set time of the month? The only thing I could think of was my menstral cycle, but I haven't had one for about three years, so that can't be it. Thanks for your response. Shelby

I understand your wanting to do this. Maybe get a group going for the ill and then thier significant others. I have a fiance and due to my disability with this they have told us we cannot get married. We are both okay wtih it at this moment. The only thing is that we have a different view than most couples. When we met I was an at home sickie and now in the past year I have gotten better, got my license back and returned to school. It was his adjusting to me feeling better, not being sick, but it is still a hard adjusment for both of us. I hope you get the support group going. Shelby

My thoughts and prayers are with you. I hope that all starts to look up for you and your family and will keep you in my thoughts. Shelby

Hi, I don't think that you are overdoing the medication on your son. When I was 20 I was taking 10 pills in the morning 5 at lunch 10 again at dinner and 22 at night. I had such a hard time figuring out my meds cause they wouldn't fit in the pill organizer I had to buy 2 of them. My doctors told me that since nothing was doing anything to help to go off them all. I went through such withdrawl from it all that I was in bed for about two weeks til I felt better. Kind of like coming off the Effexor, that was bad too. I think that the meds youa re taking are in control. Shelby

Hi All The ironic thing was that I was just thinking about posting something about migraines a couple of days ago. Here is my question: I get these migraine like headaches. I can handle the nausea and things that go with them, but I have been getting very edgy when I have one. I get irratable and start yelling at people and getting really no so nice. Has anyone had this problem? Thanks, Shelby

Isn't there a song called "Dizzy"? I think that this idea of yours is cute. I will try to think of more songs and get back on this. Shelby

Hi, A friendly vacation for POTS? Hmmm. I am taking an anti friendly vacation to Arizona. I would think that a cruise to Alaska would be good. Or a trip up to Canada. Some can't fly, but I have never had a problem with it. Roselover, you can take wheelchairs on the plane. I took my own when we went to Hawaii. The good thing about it is that you get on the plane first. No waiting. There are advantages to everthing. Especially if you fly Southwest because they don't assign seats. Shelby

Thank you all for your imput. I am just trying to figure out a good plan to get through the summer. I always hate this time of year. Most people get a winter house in Arizona or somewhere south so they are in the warm areas. I want a house in Alaska during the summer. Hope you are all doing well. Shelby

Hey all of you. Hope the summer isn't killing anyone off yet, although somedays I feel it is. I just wanted to know how much salt intake everyones doctors have suggested. My dr just said add extra salt to things, but never gave me a number of mg. that would be good enough. Wonder if anyone here has had a dr. say what is a good range. Thanks in advance. Shelby

HI, I used to have bad insomnia too. Not as much lately as I used to. I went to Mayo's Pain Rehab Center for my Fibromyalgia and I had this stress guy that talked to us about relaxation, insomnia and stuff. He has such a soothing voice, I used to fall asleep during his class, lol. He gave us a relaxation tape. I use that to fall asleep. The only time it hasn't worked is when my fiance came to surprise me and scared the crap out of me. I was supposed to be on my deserted island, and someone was there. I haven't been able to listen to it since. It is the only thing I can think of that made me fall asleep. If you want me to copy it and send it to you I can. I would be glad to. I hope it gets better. Shelby

Morgan, I live in Laurens. I know there are more small towns than anything else around here. I go to Spencer for college at Iowa Lakes Community College's Spencer Campus in that little strip mall north of town. Funny you say Everly. My fiance lives in Rossie and graduated from Clay Central Everly in 1998. His sister graduated from there in 1996 and his brother in 2000. It is a small world sometimes. Especially in Iowa. Drop me a line if you are ever in the mood to visit your relatives and maybe we can get together. Shelby

I currently reside in a small town in Iowa, the northwest part. I was born in Madison, WI. I have lived in different places though. Too many to count.

Jen, My first trip to mayo was in 1998 and I had to see a ped. doctor because I was only 17. I came back a year ago this past Feb and I saw the Dr. that they were sending you too. It was Dr. Fealy. He is an older gentelman, but I found him to be very wise and very knowledgeable. He finally gave me the answer that I have been waiting six years to hear. I guess that it isn't as disapointing when I go up there because it is only a three to four hour drive compared to all that travel that you had to do. I am so sorry things didn't work out for you. I know how spendy and stuff travel can be. I thank goodness have insurance that pays travel and hotel. Well at least some of the cost. I hope things get better and you get to see Dr. Low. I hear he is good, although I have yet to see him. I am doing much better though after seeing Fealy. Although I have a funny story about my appointment with him. I went to do a tilt table before I saw him and they do some kind of test where they give you a shock. Well they told me that it wouldn't hurt and I would be fine. So when I felt this extreme shock going through my body I jolted and felt like a pansy. The lady turned off the machine in a hurry. Turns out that the guys had come to fix the machine the night before and had turn the nobs to the highest level, some 4 times what it should have been. She said she couldn't imagine the shock I just had, I replied "wanna?" I had marks on those spots for weeks. So good luck. I hope all turns out well. Shelby

Hi, I have a quick question to you all about a heart problem I have been having. Sometimes when I stand up I have this feeling that my heart pauses or stops for a sec, then heavily palpatates to catch up. I get out of breath and feel nauseated and dizzy. I know that with the NCS some of this comes with the diagnosis, but in the seven years I have had it, nothing like this has ever happened. I was wonderinf if any of you have had this. I did go to the doctor and I will be having a holter monitor on Monday. I just wanted your opinions if you would. Thank you so much, Shelby

Thanks so much for all of your replies. I appreciate knowing that all of you are going through some of the things I am going through. I love it when familiy says, well if your mom can lose the weight you can too. I was like, mom doesn't have these probs. They act like I am using it as an excuse. I swear I am not. Thanks again for your posts and supports as always. Shelby

I have a quick question for everyone if you can answer it. My dr. told me that I had a small spout of brain damage or bruising and this is why I am having this problem. When this all started I was about 170 pounds and very active. When I got sick I was not able to exercise with out getting really sick or passing out. I have NCS, and I have had many spells where I have hit my head on things like the floor or the table, ect. Unfortunatlly I did not get the whole lose weight thing which stinks. I got the opposite thing, I gained a lot of weight. I am now 240 lbs. aprox. The problem. I have problems with recognizing myself sometimes. My mom and friends and fiance say that it is normal to gain that much weight and not be able to recognize yourself. I have been this way though for about a year or so. I have days where I am fine and I get that the person in the mirror is me, but I get days where I do not recognize myself at all and it freaks me out because I look in the mirror and it is not the person I remember. I even find myself buying clothes that would have fit me six years ago and will definately not fit me now. It has developed into self-image issues because I get confused and think I should look much better if that makes sense. Please help and tell me if I am alone in this. My psych. says that he agrees with my regular dr. and that I am not crazy, but that isn't how I always feel. Thanks for any imput. Shelby

I have that same problem you do. I see things. Not spiders or bugs, but things out of the corner of my eye that I swear are there, but they are not. It gets scarry because when I am going to bed I think that there are things outside, but it is my imagination at work, or something. Shelby

I noticed that I started having a stair and ladder phobia about a half a year into my NCS. I am not sure if it was because I was passing out or what. I am not too afraid of heights. I am not sure why it happened. When it hit I was getting something at work and went up the ladder, that was not a problem, it was coming down. I freaked out and had to have someone waiting at the bottom of the ladder and it took me almost 5 min to get down. I have had a problem ever since. Shelby

I think that this is ineretesing. Here is how I am dealing with the secretary issue, I went to school to be one. I am hoping that if I can make a positive influance to others and share my horror stories with other people on how I was treated, at least to the secretaries, then maybe they will remember to think twice before being a pain. I will graduate with my degree in May of 2006 and I will be going to try to make a positive impact on the rest of the people around me and try to get them ot understand. Shelby

I take .1 to .2 mg daily depending on how I feel when I get up in the morning and how I am feeling during the day. And what the weather is doing. My doctor basically put my florinef and midodrine dosages in my hands because I know how I am feeling and what works and what doesn't. Shelby

I had to stay up there for three weeks straight. If you want to go for comfort and a little luxery, then I would go with Staybridge Suites. It is right across from St. Mary's and there are shuttles to Mayo, or of course you can drive. I don't remember it being so expensive either and my suite came with a microwave, tv, couch, fridge, freezer, dishwasher, they have a nice pool area, a very great breakfast. They have real food for their breakfast. They have internet access, and free laundry facilities. It was the best time of my life. I didn't want to come home. Good luck at Mayo Clinic. Shelby

Okay, this brings up a funny story to me. When I was applying for disability they give you jobs you can do with your condition. They told me I could be an amusement park operator. Standing there and then passing out on the tracks, getting ran over does not sound like fun to me lol. The other things I can think of are a race car driver, although I would like to date one (GO JR). A stand up comidian. A bowler, I have passed out down the lane once. That is all I have. Shelby

Hey All, I wanted to reply so this will get bumped up as National Invisible Chronic Illness Week is coming up next week. I hope you are all well and you all have a nice NICI week. Shelby

Morgan, I thought that the topamax was great too. I think it helped a lot. That is until I developed kidney stones. I guess that was a side effect that was never explained to me because it doesn't happen often. It does happen though. I am sure your son has increased fluid intake, but I would increase it more. They told me to drink at least 2 liters a day. It will help to not obtain the stones. Since I went off the med I have not had any stone relapses. Shelby

Hi Joan, Yeah I am 23 so I guess that makes me an adult these days. lol. What pediatrician did they send you too? I swear if they tell you to go see Dr. Porter I would think twice about it. I mean he is a good doctor, but he didn't do anything for me. I went there a few months after I got sick and tried to get help. He did at TT and said that there was no problem and it was all in my head. That didn't help now did it? So it took another 2 years to get this all figured out. Thus my dislike of him. I think that he had it figured that I had NMH, so he did a tilt table where they lay you down and then stand you up and then inject some kind of drug to get your heart rate going. The latest TT that I did they just did one where they stood me up and measured my bp for 10 min to see if there was a change. There was at about 5 min 30 sec. So that gave me the correct diagnosis finally. Only took 5 years. I am not discouraging the Mayo Clinic at all...I really love the people up there and they have proved to be very helpful. I guess no matter where you go you are always going to find a doctor or two that you don't get along with. I hope that things are going well for your daughter. I understand the not being able to fall asleep. I am trying to get to bed earlier these days since school started. I start to go to bed at 9 and fall asleep about midnight. Shelby