misstraci

thanks Katy, Naomi, and Potluck. I really hope this has just been a bad period for me. Its just scary when things get worse; I'm sure all of you know that. And They mentioned the seizure thing as well at the ER. I need to follow up with my physcian they said. and that is depressing because he is not too understanding (haven't found someone new yet). He loves to pull the anxiety card and the, "i'm sorry, sometimes you just have to learn to live with things". that is easy for him to say right.... he's not the one experiencing this.

as far as the mri, i had one about three years ago when this all started and back then everything was fine. i've been trying to call my dr all week about a repeat he hasn't returned my call. I hope nothing has grown in that period but of course I need a redo to rest my mind. My main concern was that I had had a stroke because I heard someone say the burn smell indicates a stroke and that of course freaks me out

So, This week has been moreso terrible than most and this morning even moreso than that. I was at work "pushing through" as usual but I just couldn't. I felt I was in and out of consciousness while sitting at the desk. Lightheadedness, pre-syncope, etc. which I normally have but the back of my head was feeling really bad, not a headache but pressure, almost like something pushing from the inside out, just feels like something is in there. Anyways, I started smelling a burning smell. It didn't go away and scared me, so, I googled what that meant, of course it said terrible things like I was having a stroke. I guess long story short, i went to the emergency room, who as usual, were of no help. They told me I was having a migraine and the smell was an aura. It wasn't a headache or a migraine in my opinion, I still feel crappy.

Have you ever had a burning smell? Was it migraine related. stroke related, or seizure related, or something else?

Glad to hear that things are looking up for you! Hopefully this is the end of a terrible two year span. I've also been sick for two years now but unfortunately, I feel like i'm getting worse and not improving; still digging for my answers. Good luck to you and thanks for the positive update!!!

Hi, I'd also like to know this information. Sorry I'm not replying to your question, I'm just hoping someone else writes you and describes this. I do know, like arizona girl says, that menstrual cycle and dysautonomia don't mix. I've got it bad right now. This is my week after and it is horrid. I'm not sure what the hormones are doing exactly but whatever it is, feels terrible and like I'm dying.

Thanks. I always look at others in a similar way, as though they may be going through something similar as I am. I give people the benefit of the doubt as they say. We have no idea what other people are currently experiencing or what they have been through. Some say I am too nice but I can't not not be that way, because you never know. you never know what another person is experiencing!!!

Kor1212... my friend bought me the book you suggested and i'm halfway through. very good so far. all too familiar with the twenty different doctors, etc. It seems the lady went through a lot of colema, enema, colon cleansing. I'm sure that is very healthy for anyone to try, I never have but it's tempting.

I'm not sure if what you describe is what I'm experiencing but i think its similar at least. I don't necessarily get the ringing ears but I definitely get the "concert head" like when you've been in the loud music and come outside and your entire head feels funny. Yes!!! I can't even describe the feeling but I surely get it and it almost feels like no oxygen is getting to my brain which feels like lightheadedness/presyncope to me.

I say fine thanks even though that is lying through my teeth. I figure, if I always say, not well, I will sound like a debbie downer and also, people ask a lot of questions or everytime they see you, continually ask about it, which sometimes is nice and showing concern but sometimes its get to where they ask and say things like "still not feeling better" and then I'm just angry and want to say "yeah i can't flippin believe it either" yada yada yada

Sorry Katybug to make you write it out again but thank you. I bet if you were to be on the antibiotics again that you would show improvements but that is just my guess. It stinks that there is so much controversy and even insurance won't cover some of them. $450 an hour is crazy.

Like Tablet mentioned, I've looked into Igenex before. I didn't do it because I couldn't afford it. Do they accept insurance at all these days?

Thanks Kor and Katy. I just looked up the book you suggested, I want to get it. And I've heard how political the lyme issue has become. i dont' understand it though, it's another illness just like other illnesses out there. I wonder why there is such controversy that surrounds it. I also tested negative, I'm not sure which test I had, the most basic one available i'm sure. I'm going to read the links you sent as well. Katy, that is funny the dr acted as though you were asking for some crack or something. So, in the end, were you able to be treated completely and do you feel any better than you once did?

Thanks guys as always for your responses.

What is the main or best test to detect lyme disease? ELISA, western blot or something else? and if you have chronic lyme is it still detectable months and years after the bite?

I'm sorry for everyone who feels this way and I can definitely relate because I feel way too often like I'm dying. I say it outloud to family and friends and I am being 100% honest when I say it, but I don't think they are taking me seriously. I'm glad I haven't and I hope that it is a long ways off because I fear death. But most days, maybe not the entire 24hr straight, but for a portion of the day, I feel like I am truly dying. How can anyone feel this way and be ok I think to myself. How can my heart do that and my head feel that way and nothing be wrong. How can whatever is attacking my body be "just POTS" and written off so easily by all the dr's I've ever encountered. How can they tell me it's something I have to learn to live with, They have no idea the quality of life I live or lack there of really. I know I should not envy others, but I do! I see everyone living their lives, going grocery shopping, enjoying their kids, driving, breathing, just being and although they could have their own ailments going on, you know a good majority do not, they are happy and healthy and i want that. I just want to live and feel good, i don't want anything fancy, i don't need to be 100%. I just want to live and not feel like death.

Thank you all for sharing with me your experiences. I like hearing other peoples pros and cons about it.

I'd like to know your experiences with birth control (pills, shots, patches, etc)

I went to my OBGYN the other day in hopes of finding a BC method that may even out my hormones and not make my POTS symptoms worse during the weeks around my period. He prescribed me seasonique and said it would help, I wouldn't get but a few periods a year, and it should be good for me. I'm freightened by the risk of blood clots/stroke/heart attacks associated with combination birth control though. I can't bring myself to take it. I called back and had him give me the mini pill instead which consists of progestrone only.

Is anyone on either of these medicines (seasonique or mini pill). What are your reactions and views of them? Did it help your symptoms any or give you new symptoms?

Happy for you!!! This is wonderful news, hope your health continues to improve!

Yes, my dizziness can be different too. Sometimes I feel it more in my head and sometimes my whole body, sometimes in my chest/heart and that one is really hard to explain to others. Sometimes my pre-syncope or lightheadedness feels so weird in my head, I wonder if I'm having seizury stuff going on.

YES.... yawning, stretching, breathing deep, sneexing, blowing my nose.... all these things make my heart race. I just noticed this weekend that when I blew my nose, it felt like I had just ran around the block. I was a bit concerned.

Thank you all for the responses. That is some good information. Spinner, that is crazy the the food allergy can mimic any illness; I believe it!!! And Dizzy, yes it is impossible for some people to learn anything despite hard core evidence. Canary, It's going to be hard for us to knock the sweets but we can do it! Glad the vinegar helped your infection to get better. Kelly, that is weird your levels are normal if you're ingesting that much. Our bodies are so crazy......

Has anyone been "diagnosed" with or suspected this condition before? I know that a lot of traditional MD's are not even claiming it as a true thing but dieticians as well as alternative MD's say it is causing issues for a lot of people. Issues from diarrhea to headaches to dizziness.

I wanted to address a personal issue of mine which I think is real and that is sugar addiction!!! I checked out lots of books from the library and was reading this afternoon and there was a quiz about which type of sugar addiction that you fall under. I fell under two different ones but one was the one for candida in the stomach. You crave sugar because that is what feeds the bacteria and the more you eat, the more you crave, a vicious cycle.

I guess I was just curious if this sugar craving/addiction/leaky gut was real and if it has anything to do with my POTS symptoms, etc. Hahaha, this shows I am researching all ends to figure this out and heal myself. If I have to give up chocolate, it's going to be hard, but I'll do it

Thanks Pam and Linda, your kind words give me hope! Just like always when I come on here.

I'm not certain mast cell is what I have, but I thought It was worth the digging to see if maybe just maybe.....

Thanks

My test came back "normal", I didn't get specific numbers but she left a voicemail to say it was normal. I know I'm not the only one who wishes some test ANY test would come back with some answers. I get so discouraged. Although, of course, relieved that things are normal but I just want something so bad to show a reason for why I feel terribly :/

Thanks Claire and Chaos! That sounds about right. AND, I just got back and normally I never have to pay for blood work but i had to pay for this test, like it is all special or something, I was fussing to myself on the way out, saying this stinkin test better come back positive. I hate wasting time, money, and effort on things that don't work out I will look at that article by Dr. Afrin, seems like he is the man to see!!!

My PCP sent me to an allergist here locally who agreed to test for MCAS even though she said she highly doubts that is what I have (love it when people doubt things right off the bat and they have no clue about you or your body). Anyways, she ordered just a tryptase blood test which i need to go do later today. My question is this, will this be a significant test to test for MCAS? because I was under the impression it was not an easy thing to test for and in addition, if I'm not in the middle of a cluster of bad symtopms (possibly indicating something flairing in my body) could the test come back as normal because in that moment I was not symptomatic?

thanks for any information you may have.

Awesome, good luck, even though its a few months away. Why do you think you may have PAF? I hope you don't, just curious.

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