lorrie

I'm sorry for your loss. I had a miscarriage and years later, my son died at 6 days old. It was awful to go through and I didn't know at the time I had POTS. Later, after getting a diagnosis, I asked about the possibility that the POTS had played a part in it. I was told that the miscarriage probably would have happened either way, but my son more than likely did have problems due to my condition. He was born with no active brain waves other than the brain stem. They think due to the lack of oxygen. Be thankful that you know what your condition is so you can seek the appropriate medical help if you become pregnant again. I wish I had of had that knowledge. Hugs to you!!

I feel bad when my HR is in the 50's. I feel best when it is between 70 and 80. I am also 43 and my POTS doctor thinks that is a good range for me as well. I think you should get another opinion before starting this medicine. Trust your own feeling about this.

I am going through the same questions...I teach and school starts back in a couple of weeks. I'm worried that once the stress and standing starts again, I will be more symptomatic. It makes me nervous. Hope you are able to peacefully come to a decision that is best for YOU.

I had a good experience with a psychologist and a VERY bad experience with another. The good experience was a kind lady who I sought out after years of infertility and she let me say all the things I had bottled up about that. It helped me to have a person to listen that was not so closely involved. Turns out she ended up writing a wonderful letter for me when I turned to adoption and actually had a hand in us getting our daughter. The bad experience was with a guy that was suppose to conduct Neuro-psychological testing on me to satisfy the doctor from Vanderbilt who insisted all my passing out was due to stress. He popped in the room and began to hook me to a machine...he had not spoken a word until he told me to answer the questions on the computer in front of me. I had to endure 6 visits with him and each time he would say "You are too young to be this easily confused...did you struggle in school?" NO...I DID NOT struggle in school. I made A's and B's and have taught school for many years. He was rude and non-caring and at the last session, he simply said "Well, that is over and I think you have adult ADD." I couldn't get out of that office fast enough. This all being said, I think it depends on why you seek a therapist and if you "click" with them if they help or not. Added note: Vanderbilt has some great doctors...I just didn't happen to have one of them.

I actually asked my POTS doctor today if he had any suggestions on helping others understand and he just shook his head and smiled. He said "If I could answer that, I could stop working on the money I could make." Then, he did tell me that this is a question he gets often from his patients and that he would be glad to talk to any of my family if that would help. He also gave me some printed information that I can copy and give them. I was impressed that he didn't just shrug this off, but took a little time to discuss it with me. He also told me to never let others doubt myself. He said I know better than anyone how I am feeling and if they don't understand, it is their problem. He said I should focus on helping my husband and daughter understand that there will be days I will need to rest and they will have to pull more of the load. Since they are the ones most affected by this, I agree with the doctor. They are the only ones who really need to understand fully. I pulled this site up and asked my husband to look over the information this evening. He came to me after about an hour of reading and searching and hugged me up tight and kissed my forehead and told me he was sorry. Of course, I cried...at last, he is beginning to "get it". Bless his heart, he fixed dinner and got my daughter in bed for me. It was wonderful to be able to lay on the couch and hear them laughing and talking in the other room. This probably seems like a really small thing, but believe me, it is huge at my house. He is a great guy and helps out some, but tonight the atmosphere was much more relaxing and the stress of me feeling guilty for needing to rest was gone. He even sat on the couch with me after she was in bed and asked about my doctor's appointment and really listened this time. I knew you all were great for me...who knew this very site was also going to make such a difference in a problem I have struggled with for so long....thanks to all of you!! I love this forum!!

Well, my doctor's visit went well. Probably the best visit since being diagnosed actually. He did a series of BP readings and HR readings. Sitting BP was 127/72...standing BP was 96/45. HR sitting was 88...standing it was 130. Lying down, both readings were similar to sitting. The holter monitor caught some crazy stuff...HR went as high as 180 and as low as 45. The doctor also had results back from an MRI I had while hospitalized a month or so ago. It showed I have degenerative disc disease at all levels of my spine. I have a bulging disc in my neck. My nerve study results showed that I have nerve damage in both arms. Severe damage in my left hand and compressions at both elbows. No nerve damage in my neck. Severe nerve damage in feet and some "dead zones" in my upper legs. He thinks some of the nerve damage is due to my diabetes. Although the results weren't what I would like to have heard, at least I know and I feel more comfortable with the diagnosis. I was really struggling to accept the POTS and NCS diagnosis. He said all this along with my tilt table test confirmed it all.

I have had the holter monitor 3 times before and have avoided having an episode while hooked up so it could be recorded. That was frustrating to say the least. Well, I finally did it...I had the monitor on about an hour and I went into a full blown episode. I don't usually get excited about passing out and my heart beating out of my chest, but I was glad it was recorded. The bad thing was that I was in a restaurant with my sister and when I started feeling sick, I told her we needed to head to the bathroom. I ended up wiping out a trash can and scraping my arm pretty good. Then, I had to lay in the bathroom floor (gross) until I felt better. I learned a good lesson...don't worry about embarrassing myself in public...just lay down where I am and forget trying to get somewhere more private. Ended up causing a big commotion anyway...lol I am seeing my POTS doctor tomorrow and getting the results. At least I have a good story to tell and he gets the information he has been wanting.

Thanks Cath! Yes, I had an episode while going through the seizure study. They said it was not a seizure, but the doctor was also no help in determining what it was. He acted as though he had never heard of POTS and had to look on the internet and in medical books. I was very excited that I had an episode with loss of bowel control while monitored, but it really didn't help after they studied the report. I am having this report sent to my POTS doctor now so he can look over it.

Thank you all so much!! Why is it that we, as humans, feel better knowing others are going through the same thing? This disorder can make you feel so isolated and frustrated. I'm taking the advice to just give them the information and not worry over what they do with it. I have to focus on me!!

Best of luck...my prayers are with you and your hubby!

I'm sure this has been covered many times before, but I am asking for the sake of us newbies. How many of you had to resort to disability due to your POTS or NCS? Did you have to appeal many times to be approved? The reason I wonder is I helped my mother-in-law with the process to receive disability after becoming paralyzed from the waist down and we had to appeal 3 times to get her approved. I teach and don't want to go on disability, but it is kind of hard to teach when you are in a constant state of nausea and never know when you will end up on the floor.

I have lots of stomach trouble and have had tons of scopes....yuck!! Hope it goes well for you.

Beautiful cat!! I agree with Abbi...lol

Yes, heat is very hard for me. We went camping last weekend and it took me days to recover. I am looking forward to cooler weather because I love to be outside.

Pat57...I love the idea of giving the T-shirts for Christmas!!

Thanks for the links. The spoon theory is neat, but not sure it will help some of the people I am dealing with. Jump had a good point and is what I have found to be true too...when you show people an article about POTS, they immediately say "well, you aren't that sick"... What I hate is feeling like I am trying to convince others that I am sick at the same time I am trying not to be sick. I have never been a lazy person and resent getting that label.

I have a wonderful husband and he is patient with me and helpful when I have an episode. That is where it kind of stops...if I am not in the middle of a severe black out, he thinks I should feel fine and go on about my business. Because I don't "look" sick, my friends and family just don't understand why I don't often feel like doing things I used to enjoy. People have made comments about the number of days of work I missed, how I lay around too much, how depressed I am because I don't want to go shopping, and many other comments. I haven't even mentioned not going back to school (I teach) this year and they are saying I just want to go on disability. It is so frustrating and it begins to get me down. I don't want to feel like I am going to vomit every time I stand up! I don't want to be on disability...I want to work! I plan to go back to school (which starts in a few weeks), but I am afraid I will again miss alot of work. I printed information for my friends and family but they act like I am just coming up with stuff. They think it is depression and I will get over it. What are some things you all did to help the people you care about the most to understand that this is a real illness and not just a way to be lazy? I appreciate any suggestions you have.

My prayers are with you...hugs

Pat...thanks for the suggestion on the book. I called my doctor's nurse (my local PCP) and asked them about it and they are so interested in learning more about all this that he is going to order the book. I was impressed with that because I really can't afford it right now. I drive 2 hours to get to my POTS doctor, so my PCP learning as much as possible will be a huge help.

Hi, I don't have any suggestions but I wanted to say I'm sorry for everything she is going through. I hope you will get answers soon. It is so hard to have a child going through health problems. Best wishes!!

I haven't had the chance to get to know you yet, but I am truly sorry for what you are going through. Things will begin to get better soon, but you need to take care of yourself. I gathered from your post that you are a teacher? Me too and we have mandatory meetings two days next week. I am praying that I am having good days but if not, I won't be there. That's one thing I finally got out of all this...my health has to come first. Hope you feel better!!

oh, and don't forget the pounding heart and bp all over the place from extreme hi to extreme low

I have the following symptoms: always - dizzy, nausea, weak, feel hot, tired sometimes - stomach pain, headache, shaky, overwhelmed by noise and light with episode - stomach cramps, severe sweating, bloodshot eyes, red skin, severe chills and all the others above

I hope things smooth out for you soon. I do have problems first thing in the morning with my hr. I wake up with a pounding heart almost every day. Pain also sets off the POTS. I had a kidney stone stuck in a tube and was having severe pain in my stomach and back with it. I was sitting in the urologists office waiting to get my x-ray results and passed out with a full blown POTS episode. Thankfully my sister was with me to explain to the rush of office staff and nurses who came running. Maybe you should wait awhile longer to play your horn. Best wishes.

I appreciate all of you and your comments and advice. I moved my appointment up from the end of August to next Monday with my doctor and I am going to discuss all this with him. I also printed off some POTS info. and gave it to my husband and my sister. Maybe if they become more aware of this disorder, they will better understand when I need to talk. They have tried so hard, but it just isn't easy for them to "get" it. As far as my daughter, she is a smart little girl and one of the first ones who will jump in and help when I faint or have an episode. She is in charge of getting a cold, wet rag and wiping my face and neck...she will also closely watch the adults to be sure they are doing things correctly. She once told my aunt to back up and give me some space...she heard this on a TV show. I know she will be fine and I am probably feeling guilty for no reason. It just really stinks to me not to be able to play with her like I want to. Her face looks so disappointed when she asks me to do something that I am not up to doing. Maybe I'm the one who is feeling left out and I pretend it is her who is suffering...just a hard situation.