JaneEyre9

After the way those brochures helped me with the paramedics and the ER last weekend, I can't imagine not donating! I'd like to make a contribution in the name of my friend's father (Mr. Dodd) who recently passed away. He was a very giving man, and so I'd like to dedicate my gift in his memory. I wasn't able to put his name with my online donation, so I'm making the dedication here! Thanks again, Michelle. Those brochures are so helpful and well-done. Kristen

That's such a great accomplishment! Way to go, Sue! and yay for no one being in line!! That is the best feeling. I think crying is a very understandable reaction. I'd probably do the same thing. I hope you have many more outings like this one

That's great news, Ernie! I really do hope this is your miracle pill. keep us updated on how you're feeling! Kristen

Hey Dizzy, I have been doing some research online about a rash that i got on my face (w/ fever) last weekend. When you said "mouth sores," it reminded me of a webpage on Lupus that i was reading. That can be one of the symptoms. You also said your antibody levels were high, so i just thought i'd mention it as a possibility. Kristen

evie-- the skin hurting thing actually sounds pretty reasonable to me. I was tested for the flu at the hospital and i don't have it. I don't have any flu symptoms either (no coughing, stuffy nose, headache...). I was sick in february with some sort of infection, but it was gone before this happened. i also have a clear chest x-ray. wacky. I finished reading the article that BeStill linked. It says that Melatonin worsens orthostatic intolerance...maybe i was just overly sensitive to that effect. definitely interesting...it acts on the baroreceptors that regulate blood pressure!!

Aww, Morgan, I love the pictures! It is so great that you renewed your vows. Looks like you have a very special husband and family!

Hey Diz, I can sure relate to the never-ending PMS feeling. I haven't had it as long as a month, but i've come close at times. I'm working on a week and half right now. One time I told a doctor that i had PMS for 2 weeks and she wrote in my chart that she had to "explain to patient that PMS cannot last two weeks." Like I'm imagining it. Well, i say if you have PMS symptoms for a certain length of time, then you have PMS for that length of time! You could call it PrePMS if you want, but it still feels the same Anyway, it is natural to feel a little depressed when you feel like you can't get any answers and it feels like no one is listening. The problems that you are dealing with are life-altering in every sense!! I understand your tiring search for docs that can help. It is a tough battle. Hang in there... Kristen

Laura-- thanks for the reassurance about the tachy. it made me feel better to read that. i did some googling (i think it's my favorite activity) and i found that tachy is associated with melatonin. ernie-- you made me grin BeStill-- First off, I like your logo a LOT! neat neat neat. did you photoshop that? Thanks for the link to the article. Ironically i was about halfway through reading it when i took a break to come on here and check the board. Very interesting!! Thanks for the reference! Evie-- thanks for the validation. My reaction was a POTS crash (tachy, uncontrolled shaking, wacky BP, nausea) + fever. the fever is what confused me, but i guess melatonin increases your immune response? maybe my body was fighting it off as a foreign invader. Just curious, but what was your reaction?

So my appointment to follow up after my ER adventure didn't go very well. They (two doctors) did not know what to make of my reaction to the Melatonin or any of my other POTS-problems for that matter. I was asked (jokingly?) if i was sent from the main office to be quality control and tell them all these symptoms that didn't make sense together. I said, "I wish! That would be nice if that were the case." I knew you all would appreciate that interaction. ohhh man.

yay, nina! that's great news!

Hey Jen, First off, I'm really sorry to hear about your dad being in the hospital. I hope he is doing a little better now. I can totally relate to what you are saying about the stress factor. I was feeling very symptomatic and stressed the day of my tilt and was actually shaking a little bit before the test started. I felt like my heart was racing even when i was lying down on the table. But really, it didn't make any difference when it came to the result of the test. They saw my heart rate increase upon the tilt, and i became even more symptomatic. Just keep in mind that your body will show your natural reactions and try to take deep breaths. One thing i did was try to make a little conversation with the techs before the test started. That helped calm me down a little bit. They also gave me a blanket which took some of the stress off my body since i was cold. Whatever takes your mind off the test, try to focus on that. Good luck!! Kristen

I've been thinking about this a lot. I'm a student on leave right now, so i'm no expert, but i've been looking at jobs that can be done from home. There are things like freelance writing that can be done on your own time at your computer. Maybe you can find a book of at-home jobs or look on www.craigslist.com for telecommuting options. Just an idea!

I wouldn't have been able to hold back a comment either...not in a mean way or anything, but i remind my healthy friends in a joking manner what it is like to walk in my shoes. My best friend from grade school was especially clued in one day while riding on the subway...she felt like she was going to pass out and realized how i feel a lot of the time. Her empathy for me increased a lot that day! Hope the party goes well tonight!

Hey gang, Thanks for all the support. I'm still feeling lousy...fighting the fever and exhausted. It's funny, but thinking back on the experience, it really meant a lot to me that the people at the hospital and the paramedics especially took me seriously. I felt sort of infatuated with the lead paramedic for taking such good care of me. It's funny what this illness will do to you...it even changes the qualities that make you most attracted to people...compassion goes a long way with me ;-) Thanks for the feedback about the Melatonin. You're right, I probably never will know for sure, but i think i'll stay away from it; don't want a repeat experience! Kristen

So Saturday I was feeling rather POTSy...which is pretty much the norm for me before my period. I had no appetite, but was trying to push the fluids as usual. Around 11pm I started to feel a little better, so I sat up in bed and worked on my computer. At midnight, I decided to try 3mg of Melatonin for the first time, as was recently prescribed by my sleep doctor to treat a circadian rhythm problem (a whole other post). Well, by 12:15am, I started to have a sudden, bad reaction. At first, I thought i was just really sensitive to the supplement and was feeling the effects quickly since my stomach was empty, but my heart was racing and that familiar nausea wave came over me and I knew I was crashing. So my heart rate was sitting in the 120 range (lying flat) and my BP was all over the place for about 2 hours before we finally called 911. The EMT guys came in and asked what POTS was, and there on my bookshelf were the DINET Brochures!!! My mom pulled them out and I tried (in my half conscious state) to conduct a little education about POTS in my bedroom. Well, the lead paramedic impressed me by calling a doctor at the ER and asking specifically what all these symptoms meant and how specifically to deliver the IV fluids that I had asked about. Because I didn't improve with the fluids (HR was around 140 lying flat with my legs up, lots of shaking, flushed face...etc.) they took me to the hopstial. On the trip over I saw the paramedic reading the entire brochure and asking me about the info in it. When the nurse came in to see me, he asked, so what does she have? And the paramedic handed him one of the brochures and said, "this!" Long story short, 3 paramedics, 2 doctors, several nurses and a dispatcher (and a partridge in a pear tree) all learned about POTS early this morning! The word is spreading! As for my trip to the ER, they gave me 3 Liters of IV fluid, got my heart rate down from 140 to 100, and discovered I was running a fever. A fever? I'm still not sure what to make of that POTS episode, but according to the ER discharge papers, I have a nice generic "virus." Gotta love the generic virus diagnosis. It has been one long, long night/morning. But as soon as I was able to type, I had to share about the good response from the brochures. Thank you so much, Michelle, for making them available to us! Has anyone else had a reaction to Melatonin that came close to mine? I read a lot of the older posts and it sounds like such a harmless pill. I'm still left scratching my head! It seemed like more than mere coincidence. Kristen

Hey Melissa! That was really cool to hear your voice in that clip! So the question is: How did the pierogies taste? Kristen

Jen, Glad to hear you kept your TTT and got a diagnosis. Your symptoms sounded right on for POTS. Hope that the meds give you the help you need. You did a good job getting informed and advocating for yourself Kristen

Linda, You poor thing!! I feel so bad that you are in distress and can't get anyone to help! You sound like you feel miserable! I wish I could help. Just want you to know that I care and i hear your frustration! It's just like you want someone to listen to you but no one can make these awful things go away or even tell you what might be causing them! What you are going through is so tough. Hang in there and keep pressing for answers. I know it is so hard to press for answers when you are sick! keep us updated on what is going on!! Kristen PS- I have done the mad shuffle to the toilet too...it's the worst when you are in public!

Hey Sue, that is great news! From reading your signature quotes, it sounds like the apple doesn't fall too far from the tree when it comes to your daughter's helpful and kind attitude. Congrats to her! Kristen

Hey Shannon, I know from experience what you are talking about. I am 24 and some of my friends came into town both last weekend and this weekend. I was too sick to hang out with them. It is very difficult to deal with missing out emotionally, but even harder if you push yourself to do something you know you can't do physically. It makes you mad at yourself and mad at your friends and you don't even enjoy what you tried to do. I just want to say that it's not worth it to make yourself sick over trying to fit in. There are people out there who will take you as you are...maybe even come over to your place and watch a movie with you....take you on your terms. It doesn't replace the fact that you can't do "normal things," but it does help with feeling more included socially. Sometimes on a good day I'm able to put my feet up at a movie theater...that's a good social activity if you can handle it...plus it means you will only be "out" for about 2 hours. All-day activities like a concert, I know I could not handle. I give you a lot of points for trying ;-) Sorry you felt so sick. I'm surprised that your vomiting would not clue in some of your friends that things aren't quite right!! Really, Morgan is right...when it comes to this illness, quality friends make all the difference. If you have one or two that can kind of get it and work around your obstacles, then you are fortunate. At this age it is very hard to find people that can relate. Most 20 year olds don't even get colds much less chronic illness. What you are feeling is really hard to deal with. I hear you! Kristen

yikespanic, did you tell dr. fouad that you wanted to go see dr. grubb? were you getting any treatment or medications from her, or did she just run tests on you? kristen

What a great feeling, Lauren! Glad you could get out with friends. Thanks for posting the good news Kristen

There is some good advice written here, but i just wanted to add that i empathize with your feelings. It's so hard to work and concentrate when you feel sick, and the brain fog aspect of POTS just compounds that difficulty even further. I am working at home on my thesis bit by bit and there are some days where i am just too sick to even think about working on it. It helps for me to work on my laptop in bed so that i can lean back and keep my feet up. Also I find it helps to work later in the evening when i am most alert and feel well-hydrated. As far as exercise goes, I've had some rehab and noticed benefits after 3 months or so. It's not a cure, but it can help. Kristen

Jen, It is very possible to have POTS symptoms while sitting, and even sometimes lying down. I have passed out standing, sitting quietly with my feet up, and lying down. Also, you can have other autonomic symptoms that might not correlate with your HR or BP. I can have bowel or urinary problems, fatigue, or brain fog and not have an exceptionally high heart rate at the time of the symptoms. POTS is just a collection of symptoms. I think you would feel really affirmed to be seen by a specialist. It's a lot easier to be diagnosed by a specialist than to educate a doctor to try to get a treatment. good luck! Kristen

Period, PMS and even ovulation are miserable for me. i can tell when my hormones are shifting by my POTS symptoms. (Retaining water and salt with florinef and a high salt diet doesn't help the other symptoms either!) I tried to control the hormone swings with birth control, but it made me very ill and i couldn't take it. i keep trying to get a doctor to listen to me and help me; it's very frustrating. i know how you feel! Kristen