JaneEyre9

Hey Gena, Don't feel like a wimp. Stress definitely causes POTS flares and drains us quickly of our "spoons." I have felt the same fears about "pushing myself" leading to a crash, and sadly, my fears were confirmed. I pushed to go back to work last summer and ended up passing out in the middle of a big meeting! The event really got the message across about how sick I was, and it helped me to recognize that it wasn't wise or safe for me to continue pushing my body to do something it just couldn't do. Also, my symptoms were much worse after this crash/syncope. Is it possible for you to arrange a part time schedule with your job? A lot of times supervisors will accomodate someone with a disability who wants to work part time because the employee ends up producing more effectively when the schedule accomodates their problem. I hope that things work out for you... in the mean time, take care of yourself!

Hey Linda, Sorry you aren't being taken seirously by your doc! That is SO frustrating. Even if you did have IBS, it still does not "go away" after a colonoscopy. It has to be treated, and often times it can be debilitating even with treatment! Obviously you seem to have a lot more going on than IBS. I hope you can find a doc who can help!

Elle, I was also working and going to grad school when i was diagnosed. I thought that medicine would help me and that i could go back to my normal routine...I thought I just would have to "take it easy" for a while and not do extracurriculars. Unfortunately I continued to be ill and could not go on working. It has been very frustrating for me because I was just starting to reach the point of my schooling where I was advancing in a specialty area, and I had great opportunities opening up to me. Life has sure been different over the past year, but to be honest, I see this as a time to heal my body, to get to medical appointments, but more importantly, to take stock of my life and my priorities. I may never have enough energy to do certain things or certain jobs, but maybe this redirection will enable me to do something even more fulfilling with my life. POTS is a huge obstacle, but at times, it can provide us with opportunities we wouldn't have otherwise encountered. I struggle with the same questions you're asking...about what i should do and how i will work. You also mentioned that you are concerned there is something "more" going on than just POTS. I've thought that about my case too. For you, it sounds incredibly distressing that you get sick to your stomach from just a car ride! You must feel so terrible. I just want you to know that I understand the frustration and the uncertainty. I'm right there with you in spirit! I hope all these posts help and are reassuring in some way. I appreciate you posting this topic as I am benefiting from the responses, myself.

Awesome! Great job, Lauren!! Enjoy your cool air! You sure earned it!

Hi Amy, You aren't whining! It's ok to vent here I just wanted to say that when I get really heavy periods, I have the same sort of feelings. It's really easy to feel like a mess when you are trying to cope with everyday life and you are in so much pain. Going off your medication does not make things any easier. And to top that off, you're having stress at work and feeling like your body is not at all normal anymore. All these factors are really tough to deal with all at once. Hopefully when your hormones are calmer and the deadlines have passed, things won't seem as overwhelming. It's still difficult though, and I hear what you're saying! Hang in there!

That's great to hear! Thanks for posting your good news!

Alexia-- My grandma has been gluten free for about 20 years now, so I've learned along with her. I've tasted many of her creations and there are some really yummy gluten-free foods out there. Her favorite cookbooks are written by Bette Hagman Her favorite mixes/flours/alternatives come from the Gluten Free Pantry www.glutenfree.com As for a college diet, it can be really hard...but maybe if you and your fiance can cook things in advance and then freeze them, then you'll have more alternatives when you need to eat on the run! Also, by sticking to foods in their purest form, you're likely to enjoy a naturally gluten free diet...like fruits, veggies, lean meat... My grandma enjoys potatoes, rice, or gluten free noodles to add in some carbs. Hope this helps!

Hey Kate-- That must have been so frustrating!! A trip in any respect is a huge undertaking for someone with POTS. I hope that you can get some rest and mend after a really stressful ordeal! Glad you are home safe and sound.

Sorry to hear about your awful week! Do you have a BP cuff at home so you can see how your BP is on the Florinef? That's what a nurse told me to do. My experience with Florinef was that it caused more side effects than positive effects. I was initially told that my side effects were not due to the Florinef, but when I finally was told to cut back on my dose, I felt better. Only you know your body! It's possible a lower dose would help you more than a higher dose. I hope you and your doctors can figure out the right balance of meds so you can feel better.

I am very impressed, Lauren. It was so great that you took action, did research, and advocated for yourself! By doing that, you advocated for others too...by giving us tools to use in the future, and by raising awareness of disabilities in your area.

Hey Melissa, When I was in college, I was sick fairly frequently because I just couldn't fight off infections...you know the drill. When my classmates/acquaintances would give me funny looks (like, "you're sick again!?") I would simply ask them for T-cell donations...faxed, emailed, or written T-cell infused correspondence was all acceptable. When people did it, it always made me smile and feel some support. So today, I am sending you a post that is full of iron!! Hooray! If only it was that easy... I am thinking of you everyday and praying for you too. I hope with all my heart that the upcoming info will be good news for you.

Hey Nina, Did you take any zinc or zinc nasal spray like Zicam? I read that it has been associated with the symptoms you're describing. Other than that, I have no idea, but I sure hope it clears up for you soon!

The same thing that sally said about her mother in law happened to my aunt's boyfriend. Make sure you keep an eye on things tonight!! Hope all goes well in the AM. Has he taken aspirin yet tonight? Sorry you had such a stressful day. That always makes my POTS worse.

Welcome Courtney, I don't have any advice on the painful facial flushing, but your heart rate fluctuation does seem to indicate POTS. If it increases by 30bpm or more upon upright posture, then that is likely a POTS symptom. The gold standard for diagnosis is a tilt table test. I do have facial flushing sometimes with POTS, but it's not especially painful, just warm and annoying. Could you have a dermatological condition in addition to an underlying systemic issue? Rosacea can cause serious flushing. Lauren also raised a good idea with the "Mast Cell Activation." keep us updated! PS- a quick google search on "facial flushing" pulled up lyme disease too. have you been tested by a lyme specialist?

When I'm symptomatic, I generally feel disconnected... like I'm not entirely plugged into reality. I find that I don't notice details and have reduced peripheral vision. I have a hard time taking in what is going on around me and have to focus really hard on what people are saying to me. It's a very odd feeling for me because I am a detail-oriented person and, generally speaking, like to take in everything that's going on around me.

Hi mtkim! Welcome to the forum. Sorry to hear about your less than satisfactory doctor experience. I can understand how that feels! It is really discouraging. I hope that you will be able to get your tilt table test soon. Have you considered going to another doc for a second opinion? Glad you found us and I hope you'll find all the info and support you are looking for here... we are here for you!

Hey Kate! It's good to meet you. Sounds like you are doing everything right...getting a diagnosis, researching it, finding support, registering with disabilities services, and cutting down on your course load. All these things will really help you manage your symptoms. You also sound like you have a great attitude about friendships. It's really true...the good friends will stay with you through the tough times. I am going through the same challenges and questions that you are asking...what will my life be like, will I have a career, will i be able to have a family...etc. I've taken comfort in the accomplishments of each person on this board. Many here have jobs, spouses, and families. When it comes to our dreams, we may get knocked down, but we don't give up! And somehow it's easier to make it through those bad POTSy days with this support group. I hope you find the info and support you need here!

Your determination is really inspiring, Persephone! I've felt the same mental let-down after a school term. Usually I had to watch TV and lie around for a week or two before I finally came out of it. I tell you, there is healing in mindless television for a weary mind. Congrats and keep on going...you can see the finishline!!

Happy Birthday Sue! I feel the same way. We are all lucky to have this place!

Hey Dizz! That's so great!! I was really happy to read that your IVs helped you. That's a very nice BP you had at the end there I know it makes such a big difference for me when I get IV fluids. I hope that the trend continues for a little bit.

Linda, Sorry to hear you've had such a rough time! With all those medication changes your body must feel terrible. I hope they can find a combo that will help you soon. Kristen

I have IBS and POTS. I was diagnosed with IBS around 2001 but functioned normally when I exercised and took fiber. My POTS symptoms didn't hit me full force until 2005. Because the autonomic nervous system controls digestion, it has been my opinion that the two are somehow linked. I also had increased frequency and urgency of urination by 2002. These symptoms as well as increasing fatigue and ocassional times of near syncope, I think, were all precursors to the full blown POTS, but that's just my case and my opinion!

Hahaha! Michelle, I want that side effect! I have to say that Florinef caused me nothing but problems. I had severely disrupted sleep cycles, headaches, and loss of appetite that returned to normal as my dose was reduced. It's great that it is helping you feel better!

Your post and these responses have really hit home with me. I say these same things to my family and friends...that i feel like life is passing me by and that i feel like i'll never be able to have a job or do what other people my age are doing. But whenever I say these things, I'm always reminded that POTS is an education in itself. Struggling through the lessons are not easy, and we are all learning very important life lessons... such as setting priorities--using up our limited energy on the things that mean the most, or appreciating the little things in life that healthy people might take for granted, or gaining determination and working ten times harder than other people to accomplish our goals... these are a handful of lessons we are all learning daily. So keep putting one foot in front of another, and I'll take my own advice too. You're talking to one girl who has been very concerned about her own future recently. PS- Looking at MySpace accounts can be depressing when you compare yourself to those old classmates...remember..they are trying to make their lives look wonderful and perfect, but they are struggling with their own hidden problems. Everyone is fighting to look accomplished and happy...especially on those sites.

Thanks for the link! I think it is also important to note that those of us who are overly sensitive to medications may have an even more dramatic response to these medications than even the average person tested in the study.