misstraci

CarrieJessica, I think it's neat, in fact, I thought it was so neat, I copy and pasted your "quiz" and put it on my own facebook page since I don't have a blog to put it on. Only people close to me know what I've been though,so it was kinda putting it out there for me too. I had someone comment about how strong I was and they said they loved me, awwwww. So, I think you did good, but also, like Relax says, when you don't feel well, the idea of having to explain everything or fight the battle is not worth the effort. I have been hit with the "anxiety" card more than I can tell you. It's humorous to me now, I just think, another ignorant being to add to the list of ignorant beings list

ifreem02...... yes we sound so much alike. I do live in Atlanta area. PS, if you have good drs around here please let me know. I've been on the search for years now with no luck!

imre... sorry you're not well (and everyone else/their family too). I'm not sure about prophylactic or what that is. I just wanted to say that my onset was mid-twenties, two years ago when I was 26. I thought it was because of post-pregnancy complications but anymore, I am just totally confused and have no idea.

This is going to make me sound like I'm well or better off than most but to be quite honest, I feel like walking death most everyday. I was actually telling my partner yesterday, how, if any regular person felt like i feel on a daily basis that they would either be 1. in the emergency room or 2. laid up in bed. I am pre-syncope A LOT of the day, I'm lightheaded, seizury feeling, fatigue, tachy, palpitations, It's awful but I have to push through. I have no choice, we can't afford to not do what we are currently doing. We wake up at 6:30 and get ourselves (partner and I) ready for work and wake up children (7 and 2) get them ready and out the door. Luckily I don't have to drive, we carpool, if i were responsible for driving, then, I'd either have to find a bus, marta, another carpool or something. (I can't drive) Work 8-4:30, luckily I have a sit down 90% of the day job. Pick up kids from daycare, Come home fix dinner, do homework, read stories, watch a little tv, make sure kids are in bed, then I go to bed. Of course weekends are better. No time schedule, its more relaxed, we do art projects, go to thrift stores or the park. I push through because I have no choice!!

I'm still trying to figure out what helps ultimately; overall. Of course, when I am overcome with terrible presyncope, I sit, lay, breathe, and pray. When I'm standing in line at a store; I wiggle, move, sway, pace, bend, anything to keep moving or from feeling like I'm going to pass out. Concentrate on breathing deeply, tell myself everything is going to be ok, exercise .... when I have the time and am able.

Jangle.... what is valsava?

Arizona Girl, Thank you. I would like to look into it further. I hate being told, "that's normal", "most people have that", and all that garbage, it sounds like the story of my life, that AND, "its' just something you'll have to learn to live with". I get so frustrated with teh medical field, they are just ridiculous sometimes, not everyone, but the people I see I guess. If you don't mind me asking, what conditions are you being treated for or currently have and which of those pertains to the ANA stuff? And you're right, I am here because I feel and live terribly, I'm constantly trying to figure this out (my being sick that is). Thanks

Sorry I'm late to respond, I think everyone else answered very well as to what it means but my dr said I should see a rheumatologist for it. It could suggest rheumatoid arthritis, lupus, etc. He said a lot of young females have a high one but no condition, so, just random high ana. No one ever did anymore exploring to figure out why mine was so abnormal, so, I don't know what to say about it really, just know that I have it.

I'm sorry about what happened to you. One way of testing for food sensitivities is a test called ALCAT, I had this done and they create a chart for you with sections: RED (severly allergic/sensitive) ORANGE (moderately) YELLOW (mild) and then GREEN (you can eat any of those items listed in the green box). Not only does it check for food intolerances but also for medications, herbal supplements, as well as gluten, dairy (whey), and some more stuff.

I have a really high ANA! I haven't had mast cell tests but would like to. I'm not sure about the autoimmune mast cell issue, I'm not very knowledgable about this topic but I did want to chime in and say that I had a high ANA like your daughter.

Hey Jangle, keep on exercising, sounds like you're doing really well! Aside from the lightheadedness of course. I was at a dr appt. yesterday and she was explaining how our bodies (dys patients) just can't compensate for movement, be that standing up, lying back down, jumping, SQUATS maybe, She said there is just something within us that isn't working correctly. I've tried squats, not consistently, but each time i do them, I get lightheaded as well and in addition, my heart feels like its going to explode! My legs feel good though Also, when i turn my head certain ways (movement), bend over, lean, etc etc. i also get lightheaded. I've had multiple people try to tell me that the movement causing lightheaded is because of vestibular issues which maybe for some people that is correct and although my VNG came back abnormal, I'm pretty sure vestibular issues do not involve the heart and the fact that I feel lightheaded at the same time my heart feels like it may burst, those two things are correlated.

You're welcome!

I'm not sure the answer to your question but wanted to agree with Anoj, that my pre-syncope feels like I'm dying, needless to say I feel pre-syncope every single day, it's terrible!

This is very interesting. I wish/hope it was that easy to heal us. I actually have a prescription for strong D vitamins that you are to take once a week for 3 months. I havne't started them yet. I believe my prescription says 50,000 iu or something like that. My levels were <25 and should have been >30 to be normal. Anoj..... I'm not sure what the deal is either with the D vitamins. I have heard of D3 and D2, I don't know the difference, maybe someone else can fill us in on it.

Hi Hoshistorm, I've heard really good results from those who do go gluten free. I myself have attempted the GF diet on several occasions and each time I failed to stick with it. I get feeling so terribly that I just don't care anymore and eat whatever, I know that is not a good way to look at it. But, I'm not sure the reason for others going gluten free whether they have an intolerance, celiac, etc or if it is for their dysautonomia. Try it!!! and let us know how it goes. Here are som links to gluten free recipes I don't know of any good specific ones offhand but all these blogs/websites I've gotten recipes from. http://glutenfreegoddess.blogspot.com/ http://glutenfreegirl.com/ http://www.elanaspantry.com/ http://glutenfreemommy.com/ http://allrecipes.com/recipes/healthy-recipes/special-diets/gluten-free/ http://www.food.com/recipes/gluten-free

This link has some really good information on histamine. I didn't know very much, so, maybe it's a histamine 101 for people like me who are new to MCAS, allergies, etc http://www.iainfoctr.com/articles/histamine.php

anaphylaxing.... i'm sorry that happens to you as well. i wonder if i have "triggers". MCAS is one of the things I'd like to look into. peregrine.... thanks. i know the hormones can have a big role. I need to follow up with my dr. Also, I started thinking about it and I just came off of the Lexapro I was on for a year. It's been about two weeks ago. I wonder if that has anything to do with the increased palpitations, tachycardia, sleepless nights ?!

thank you for listening, for your responses and suggestions. fish out of water is a good analogy! I'm not currently seeing a regular cardiologist or electrophysiologist. I need to find someone but can't find someone who will listen or wants to help. If you know of someone in the Atlanta area, let me know.

I can eat and stay full foreverrrrrrr. Others can't believe that hours later, I'm still too full to do lots of physical activities. I tell them I'm too full and they laugh because we ate hours ago. I feel bloated and yuck for a long time, especially if i eat heavy foods or just a lot in general.

I suppose this is more of a vent than anything else, but yesterday as well as a few days ago, I had super scary heart episodes where it felt like "the bottom fell out" in my chest, like it kind of even stopped, then fluttered and jumped around for a few hours. I've had and been diagnosed with PVCs in the past but was told it was becuase of caffeine intake. I've cut way back on the caffeine and these episodes are normally few and far between. It is really scary and makes me feel like I'm dying. Does anyone ever have these palpitations like that? I go to the computer (which can be both good and bad) and do my own research. I read something about elevated calcium levels and last night I had just taken my vitamins (one that is calcium/magnesium/zinc all together) and then that episode happened. What do you think? I still feel really crappy and my heart is all "jumpy" today. Also, the palpitations seem to increase around the menstrual cycle time. What is that about? Thanks for listening, I'm scared.

Rich, a D&C stands for Dilation and curettage, it can be performed for many reasons, a lot of times if a female has a miscarriage (loss of pregnancy) they get one. I got one because after I had my son, they did not get all the placenta out and it reattached to my uterus (which caused severe hemmorage for me), they had to go in and scrape everything out. Basically they clean out the ladies uterus, I think. I also think, that because of the complicated delivery (Feb 2010), the D&C and hemmorage (Apr 2010), then the continued state of fatigue thereafter, is what brought on my POTS (Oct 2010) but it's all spaced out, so, I can't say that for sure but it is all I can think could have happened. What do you think?

I don't suppose any of mine are strange; strange to others but normal to us. The scariest to me is the lightheaded/seizury head feeling that I get. It just never feels like my head is right, don't know if it's a dimished blood flow up there or what but I can't stand the feeling.

The results you posted surely show some abnormalities. Were you not given a suggestive diagnosis or anything? I'm sorry you don't feel well.

Congratulations!!! This is awesome news. I'm happy for you. I hope it helps; you will have to keep us informed.

I had my gallbladder removed in 2007 and then a D&C in April of 2010, I fell bad ill in October of 2010, not sure if the surgery attributed or not.