lorrie

Congratulations!!!! How much fun to have a new baby around...enjoy!!

It could have been the shouting or the position of your head either one. I had episodes often at church until I realized I was getting dizzy and sick to my stomach every time the preacher would do a long winded prayer. I don't bow or shut my eyes now and it is better. I think God understands and it saves alot of fainting in the middle of the congregation. Loud noises and intense situations can also get to me. My brother and sister-in-law invited me to go on a pontoon boat ride a few weeks ago and while we were at the dock taking a break, a couple nearby started fighting and yelling and it got very heated...I didn't know them, but started getting very upset hearing it and had a small episode. Maybe it was a combination of the two...

It is hard to balance our needs and those of the people we care about. You will be glad you were there for all the pre-wedding events once you are feeling more healthy. I have pushed myself way too hard in order to help others and then I pay for it, but in the end, it is worth it. Feel better soon! Hugs to you...

I'm not familiar with the study you mentioned, but I do take Zoloft. I have been on 50 mg. for a little over a year. I have had no side affects. I am thinking of asking to go to 100 mg. because of late, I have been easily tearful and a little down. This is a new thing because in the beginning, I couldn't cry if I wanted to. Some of the depression is due to the feeling of isolation I have from this disorder and some from trying to accept that this diagnosis is for real. Hope you find a medication that is right for you. Let us know!!

Oh, believe me...I will be ready for anything. I'm expecting some to become enlightened and others to go away totally unaffected by the additional information. If it helps just one to understand better, it will be worth it. I promised myself that this the last intentional effort I make to reach them.

Sorry, forgot to tell you this one...my dad told me today that I would feel better if I didn't stay cooped up in the house so much. He is a work-a-holic and stays busy all the time and thinks working hard is the cure for everything. Well, after his comment, I pulled my mother aside (she is actually becoming a supporter slowly but surely) and told her about the Mystery Diagnosis show. She is going to make him watch it with her. I'm thinking of inviting all the non-believers over Monday night for a "get real" viewing of the show. I am going to tape it in case anyone misses it...lol

For all of you who replied to my post about the shopping trip and the way my sister acted, I wanted to update you. She came to my house this afternoon to bring my daughter something and I asked her in for a chat. I asked her if she really thinks I am pretending to be sick and she said "yes, I do." I then reminded her of a few times she was with me when I passed out in public places and asked her if she thought that was make believe. She shrugged her shoulders. I told her I was done trying to convince her but that I was sad that there was a wedge between us when I need her so much right now. I told her about the episode of Mystery Diagnosis that is coming on Monday night about POTS and asked if she would consider watching it with me. I told her we don't have to have any further conversation on the matter after the show if she still feels the same way. She agreed that it couldn't hurt to watch the show and since she doesn't get Discovery Health Channel, she is coming to my home to watch it. I am feeling a little hopeful that she has agreed to at least watch the show. Maybe she will realize that you don't have to "look sick" to be sick. I hope the program is very informational and sheds some light on this disorder for her. I'm keeping my fingers crossed!!!! I am going to have the popcorn ready and make it a light hearted event. I don't want her to feel pressured...I just want her to get informed. Wish me luck!!!!

I have lots of twitching in my pointer fingers. They kind of do a "dance" like they have a mind of their own. My POTS doctor did a nerve study and discovered I have nerve damage in both arms. He said this is something that happens with POTS and also with diabetes...not sure which did it for me. When it is real bad, I have to wear wrist splints to get relief. It comes with a burning sensation and pain.

I have to get very still and concentrate on breathing. A cold, wet washcloth on the back of my neck and on my forehead helps too. I have to lie down and shut my eyes. I need quiet and low light and sleep. My husband automatically goes for drinking water, wet washcloths, fan, and starts turning off lights. He and my daughter have a routine they follow and they do it all without speaking...just know their part and go for it. In the early days of this disorder, it was total chaos and lots of stress and excitement. Now, it runs like a well oiled machine. We have all learned it will pass sooner if we stay calm and get me still and cooled off. Thank God for these two...I love them!!

Nina, When I mentioned the wheel chair, she said "well, I can't push you. You can walk as good as anyone else and I need my hands free to shop." She then asked why I persist in trying to make people feel sorry for me. I'm done trying to make them understand. It takes too much energy and I need to reserve that for my daughter. I'm okay with missing the shopping trip now. My husband is taking me and my daughter for an hour or so tomorrow and an hour or so on Sunday afternoon if I'm up to it. We will get her school clothes and supplies and that is all that matters. I wouldn't have any fun with people who used to be there for me and are now acting like I am a burden. They are the ones missing out because distancing themselves from me also means losing time with my fantastic daughter...they will either come around or they won't...I have my husband, my daughter, and now you guys. I'm happy with that.

Sorry to hear about your episode, but please don't be embarrassed. I've been wheeled around in an office chair many many times and it is awkward, but it works. I hope your boss is understanding about the situation. Hugs to you...

I'll bring the lounge chairs so we can rest while we party!!! Maybe some compression stockings for those who party too hard.

Well, I called the doctor's office this morning and he is out of the office until the week of my appointment. I guess that makes sense now why he called early morning...he usually calls at night. The receptionist told me no one else could discuss this with me. I asked for the nurse (got her voice mail and never heard back). Trying to just block it from my mind and wait it out. I guess if it were too bad, he would have gotten in a bigger hurry to do something. I'll let you know when I get answers.

Thanks guys...you all make me feel better. I called my sister and did actually ask about her willingness to push a wheelchair if she wanted me to go so badly. She didn't think I was funny, but I felt better...lol I have thought about this for some time now and I know I can't change them, so I'm trying to change how I react to them. So I miss out of some stuff...I also miss out on landing on the floor of a public restroom or in the middle of a shopping mall. Yeah, I'll take my couch over that!!! For those of you who want to join the party...come on over!!!!!!!

Every year the women in my family (two sisters, sister-in-law, mother, 5 nieces, my daughter and me) go on a "back to school" shopping trip. This year, I am not stable enough to handle a one hour shopping trip, let alone an all day one. One of my sisters is so mad at me and said "you are just trying to get attention". It really hurt my feelings...she hasn't even attempted to understand what I go through. I certainly do NOT want this type of attention. My daughter needs things for school too, but I plain and simply can not hold up to going. My husband and I will have to shop locally on several short trips and when I can go at my pace. Of all the things I have had to adjust to, the distant feeling from my family is by far the worst. We have always been close and done things together. I miss it and I feel betrayed that they get angry at me instead of trying to help. Just having a little "pity party"...forgive me.

Jennifer, Sorry about all this indecision on the doctors' part. It is enough to drive you nuts. What testing did the new doctor do to rule out DI? Please do your homework on this doctor and be sure he/she is knowledgeable about POTS, NCS, etc. I know from experience that a wrong doctor can cause lots of problems...lost money, unnecessary testing, frustration, delay in getting a firm diagnosis and stress. Best of luck to you as you figure all this out and get to the RIGHT doctor. Hugs!!

I was reading some posts about our symptoms and I just had to chuckle a little...we throw around all these medical terms like we are a bunch of doctors. We have all had to learn way more than we should have to (and more than lots of actual doctors know) about this crazy disorder. Now that I think about it, we sound quite intelligent...lol (We might as well laugh)

I certainly understand where you are coming from. At my lowest point, I would just sit on my back porch and cry. I didn't want to talk to anyone, I was tired of doctors, I was angry that this was happening, I missed my "normal" life, I felt like I was going crazy. The brain fog and inability to concentrate or make decisions was very hard for me because I am the type to be in control of things. I slowly, but surely learned to let go a little. It was hard and I still struggle with that sometimes, but my husband has had to take over bill paying and other decision making for the most part. I reserve my energy and brain power for taking care of my daughter. The physical part is stressful too. I have permanent nerve damage in both arms and legs and lots of muscle weakness and pain. It is hard to accept at times, but you finally learn to do things differently than you used to. You learn what works for you and what doesn't. On occasion, I have had trouble swallowing and that scared the you know what out of me. My POTS doctor said it goes along with this disorder and suggested I learn what sets that off for me. Oddly enough, dry foods like crackers, bread or chips wasn't the problem like he thought it would be. I have more problems with pudding, yogurt, mashed potatoes, jello, marshmallows...things that are thick. It is like my throat just closes up. If I am going to eat something like that, I have to take very small bites and really think about swallowing. Maybe you can experiment and find out what type of foods is triggering this sensation in you. Another reason for not eating is the nausea...some days I have to force myself to eat at all. That gets better over time. Please be patient with yourself and know you are not alone. If talking to a professional will help, go do it. Don't let this go too long because you can make yourself sicker with the worry. Let us know how you are getting along.

On bad days, I can crash at any time...haven't seen a pattern. On good days, I usually crash between 5-8...I think it is because I do more on my "good" days and my body is trying to tell me something late in the day. Sometimes I wake up in the middle of the night having an episode...that is every other month or so. Seems to be after having an extremely stressful day. I used to be upset because there was no way to tell when or where I would crash. Now, I just look at it as keeping things "interesting" and keeping me on my toes. What else can I do? I almost have to laugh sometimes...keeps me from crying.

Thanks to all of you. You are exactly right...I was just in shock and not able to think at the time. I will call tomorrow and see if I can get some answers. I sure don't need to stress over this for two weeks.

I was sleeping soundly this morning when the phone rang...it was my PCP with some news I wasn't expecting. He said after the recent testing, he discovered I have some kidney damage. I was half asleep and with the early morning brain fog, I couldn't think to ask questions. I now wish I had because I'm not sure what this all means. I have an appointment in a couple of weeks but it is going to drive me crazy. Not sure where it comes from or how bad it is. I have diabetes, but it stays in pretty good control. I know that if diabetes is not well controlled, it can cause kidney problems with protein in the urine. I also have had tons of kidney stones and just a few weeks ago passed a few that had been painfully stuck in a tube. I have had on and off blood in the urine and thought it was from the stones. Now I am wondering it is from the stones or not. No real question here...just wanted to share. I'm feeling a little upset and worried. I don't need anything else to deal with. Thanks for listening.

Believe it or not, it will get better. The constant nausea can really get the best of you at times, but you will either get more used to it or it will improve over time. Hope you feel better soon.

I am sorry about your niece. Think of it this way...now she knows and before the testing, it was there but she was unaware. It's better to know than be in the dark. I applaud you and your family for doing this research. Hang in there and remember to take care of YOU! Hugs.

I think starting a support group is a great idea. The possibility of having medically trained people as speakers also sounds like a good idea. Best of luck to you as you get this started. Let us know how it is going.

I have a POTS doctor, but I have a lady in Kentucky who needs a good doctor closer to her home. She is in western KY and has to drive over 2 hours to a doctor and she is unable to drive anymore and has no family to help. Does anyone have any experience with a doctor in this area? Thanks!!