JaneEyre9

{{{{{{BIG HUG}}}}}}

When I read this I instantly thought of "where have all the cowboys gone..ohhh" Also, if you want to look up threads by their name, you can use "search" up in the top right corner....it works easier if you just type one key word. Newest ones will pop up first when you do a search.

Long QT means that you have a longer than normal time interval between the Q and the T on your ECG. It is not the same as sudden death, but it can put you at risk for dangerous arrhythmias...the one in particular is called "torsade de pointes. " (which is quite different from the sinus tachycardia that POTS patients suffer) Long QT can be inherrited or it can be caused by certain drugs. What happens is that the drug or genetic mutation affects the ion channels in your heart cells causing them to take a longer time to return to electrical baseline after each beat. An electrophysiologist would be a great doc to see if you are afraid you have this problem due to a drug or family history. They specialize in recognizing and treating disorders like these.

Ahhh, the "what's next question!" My favorite question. Haha... I don't know! I'm just going to have to listen to my body and take it one day at a time. It was one thing to tie up loose ends of my thesis from home, but starting a new project is a whole other story requiring a big (physical) commitment. There's no way to tell if I will be capable of doing it. I'm going to try to see Dr. Grubb for the first time this summer, so maybe he can help me function better than I am right now! As far as celebrating goes...I'm thinking a big Chipotle burrito is in order For those of you unfamiliar, they are very tasty, very big, and very loaded with sodium!!! It's my favorite way to celebrate anything (as long as my stomach is behaving)! I also relaxed and watched my favorite shows monday night...the apprentice and deal or no deal. Had a sparkling cider toast at midnight...slept 12 hours two nights in a row...it's been a good time Thanks again for the good wishes! Em you made me smile haha!

That is wonderful, Amy! An upswing is such a great feeling physically and emotionally. Hope things continue on this trend! Kristen

Yay! The all-night-talk is a great sign Sounds like you found someone cool! Glad it went well!

Wow! I'm so overwhelmed by all of your great posts!! THANK YOU!!!! It gave me goosebumps to read the kind words from everyone. My jaw dropped when I logged on and saw there were two pages of posts!! I honestly could not have done this without the inspiration and support of those of you on this board. You all push through such horrible symptoms each day to take care of yourselves, your homes, your families, and your work (whatever that may be...sometimes just staying clean! ). Reading the posts over the past many months has given me hope to keep going, so I feel so special reading the responses from those of you who particularly motivated me...Nina..you sure are one of those people!!! I'll be so excited the day you receive your degree!! And Emily, thank you so much for your kind post. I know that posting for you requires so much energy! I hope that you are feeling a little better. I have been reading and hearing about the struggles you have been facing, and you are in my thoughts too! My degree is in engineering...i studied the electrical patterns in the heart for my thesis...which is even more interesting to me now that I have POTS. Thank you all so much for celebrating with me!!

Hey folks! I was able to defend my master's thesis today! My committee has approved me to receive my degree!! HooRAY! I was very close to finishing last April when POTS hit me full force (I was struggling long before then!!). This past year has been such a struggle. Most importantly, I was able to sit up to give the presentation today. Using a wheelchair helped immensely. I have been trying to graduate for so long that today it feels as if i'm floating on a cloud! And not in a sick POTSy way for once ;-) Thanks for letting me share the good news. I know you all can appreciate the obstacles I had to overcome to do this. Kristen

How'd the date go?

Hey Nina, Just wanted to let you know that steroids do the same thing to me. I was on a course of steroids when I had mono and my throat was almost swollen shut. I couldn't sleep a wink...mind was constantly racing...nothing worked until they were finally out of my system. I'm sending my vibes of empathy your way Kristen

Neat post I think one of the coolest POTSy dates I had was laying on the lawn at an outdoor concert center and listening to the orchestra perform. We ate a picnic of salty sandwiches and water and then I was able to lie back and enjoy the music. The best part was I didn't feel out of place because everyone else on the lawn was laying down too! That activity is good for any group of friends, not necessarily just a date. If I can't get out of the bed, then there is always watching a funny movie. Mystery Science Theater 3000 episodes are my favorites because they make me laugh for over an hour and afterward my mood is MUCH better! Also board games are a great way to spend quality time together and interact without leaving the house. Othello is one of my favorites because it's really easy to play while laying down, but it's still mentally challenging.

Jacquie! That's so great that you are going out on a date! My advice is just enjoy getting out and being with an interesting person. I find my spirits are lifted so much when i just get out in public. As far as staying calm before the date, maybe take a relaxing bath with candles and relaxing music? Spend some extra time on makeup or put on some lotion...anything extra special that makes you feel pretty. And as far as the date goes...relax and have fun...if you feel symptomatic, maybe you can joke around about it depending on your comfort level. Most importantly have FUN! Kristen

Great Website! Thanks, Dayna. I enjoyed reading it.

Dayna, It must be so hard for you to worry about driving your kids around when you are having symptoms. My condition is really unstable and I can have (syncope) episodes come over me very quickly, therefore I'm not driving right now. I haven't driven for a year now, and I miss it big time. I used to commute an hour each way everyday to work/school. It's just too dangerous to be on the road for that long because i get POTS episodes while sitting. I think there are suggested guidelines on the vanderbilt website about driving... http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4789 Patients with mild neurally mediated syncope have no restrictions on driving private vehicles and should have a 1 month event-free period before driving commercial vehicles. Mild neurally mediated syncope is characterized by mild symptoms (usually without syncope), occurs with warning, usually occurs only with standing, and occurs infrequently. Severe neurally mediated syncope is characterized by severe symptoms (usually syncope), occurs without warning, occurs in any position, has no clear precipitating causes or occurs frequently. These patients are allowed to drive private vehicles after 3 months of documented control of the condition and commercial vehicles after they have been symptom free for 6 months. Untreated patients with severe neurally mediated syncope are completely prohibited from driving.

Jan, I will pray for you both for strength and also that this new drug will be very effective. Kristen

Glad to see the Orange Fish pop up today! I hope that you will be out of the tank and back home in your own bowl before you know it

Welcome to the board, Laura! Glad you are posting. I felt the same way when I first joined, but soon even more new people will join and you'll feel like you've been here forever! Kristen

I feel terrible at least a week before my period and the first 2-3 days of it. I can't tolerate the birth control pills either, so I'm just sort of stuck. The things i do to try to help are: Extra fluids Extra rest Eating light frequent meals (to deal with nausea) No stressful events scheduled during that time B-complex vitamins daily Gentle walking all month on a treadmill (as i can tolerate it) The exercise helps lessen the severity of the PMS and the flow a bit. I know that once I started Florinef, my periods got worse. A high salt diet designed for water retention is not a woman's best friend. Hang in there and know that you are definitely not alone! Kristen

Sunfish, you know I'm praying for you! Jane

I'm sort of surprised by reading these posts, but I guess that we all have different levels of functioning. The times when I "push" myself to go out of the house automatically cause me to suffer for hours and/or days afterward. Usually I can strike a good balance of rest and activity when I am at home. Short trips out are ok, but require rest afterward. I've never found that pushing myself makes me feel any better. If my body says "no, don't try that" and I do anyway, I always pay the price....always. I feel like I operate with a very small budget of energy and I constantly have to balance that budget. Like, going out for a ride in the car requires 1 energy point and walking to a store requires 2...and so on...but I only have so many energy points for the day before I'm out. Some days I think i start out with negative points That's how i usually determine what I can and can't do during the day. I evaluate how much my body has to give and I try to use it up. I've never found that going over my limit makes me feel better. In fact, I usually pass out if that happens. Also, I feel like when I have days at home to rest, I do feel better. I don't stay in bed all day and get deconditioned, but I do rest and lay down when I need to and it really helps me to feel better and regain strength.

Be very careful! What happened to me may be rare, but it did happen... http://dinet.ipbhost.com/index.php?showtopic=5183

Welcome, Ellen! glad you decided to post. It's great to read people's experiences on here, but I think that it helps even more to have direct interaction. It's wonderful that you are able to stay well-controlled with meds. Were you on florinef for your CFS diagnosis? Are you on anything else? I know what you mean about brain fog. I get so frustrated when I forget my main symptoms while trying to talk to someone! Good to meet you! Kristen

Hey Belinda...so glad to hear you are back ok from the hospital. thanks for checking in! That ear infection sounds awful! Glad Dr. G was able to see you. Hope the meds have you feeling better soon. kristen

This is a really universal question for us, I think. You identified the variability of the symptoms as the biggest problem, and you are right. I think the key is setting goals, but having flexible expectations of yourself. Like for instance, when I first got diagnosed, I was planning on defending my masters thesis and graduating within a couple months. Well, that goal still stands a year later, and I've kept working toward it, but I've discovered it's not going to be nearly as easy to complete as I had once thought. Learning to live with POTS seems to be a series of rude-awakenings and realizations at first. It's, ohhhhh my, i can't do that anymore...or ok, this used to be a breeze and now it's quite an accomplishment. I think it's important to always accept where you are physically, but to not give up trying to get better...also to not give up pressing your boundaries in small ways. I wish I knew that there would be days where my biggest accomplishment would be getting out of bed and washing my face. I wish i knew that the medicines don't fix you I wish i knew that side effects of medicines can keep you as incapacitated as POTS itself. Then again, it doesn't hurt to be optimistic and keep hope alive. If we had known all the limitations up front, it might have been tougher to face the diagnosis. This is a good question. I'll enjoy reading the responses of others.

Glad she is getting some medical attention! Hope she feels better soon! kristen