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I just am so frustrated with this whole thing, all I know, with absolute certainty is that one day I was sitting at work and when I looked up I felt lightheaded, like I was going to pass out, it happened again and again and every day since that day has been completely scary, miserable and horrible. Before that day I was completely healthy. It took me about 6 months to get diagnosed with dysautonomia, my Dr. did a poor man's tilt, I had a regular TTT and did not pass out, other Dr.s have checked me in their offices and saw my heart rate go up from 90 to 120. For a long time I took midodrine, 10mg, 3x per day and my BP never went higher than 90/60.

When florinef was added my BP started going higher and I went off midodrine. I was ok like this until one day my cardiologist told me to start lowering my florinef, and eventually I was taken off it completely. I was fine for four days, for many days leading up to this I felt great too, i felt like me again.

Then the whole thing started over.

I'm on .1mg of florinef per day but I am not feeling like I used to, before all of this started. I struggle with neck pain, headaches, head pressure, lightheadedness, OI, nausea. I never want to go anywhere or do anything because I do not know how I will feel, often my symptoms are very distracting and I can't focus on anything, they demand my attention.

I have never passed out.

When i lie down my head and neck often hurt. When I sit down my head and neck often hurt.

tylenol and ibuprofen do nothing for this pain.

I hate my life. I adore my husband, kids, friends but I hate feeling this way. I don't even feel like I can talk about it to anyone because I sound like an idiot with these vague symptoms and that look.... that, "why aren't you better yet?" look.

My 3yo speaks matter of factly about me being sick. I was supposed to be better now. I thought she'd never know about this. I can't relax and enjoy anything.

ok. vent over. thank you. xo

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oh wow, that is scary because that sounds verbatum like what comes out of my mouth. I feel like i wrote that vent. I too was healthy until one day at work when i was walking and then nearly blacked out and dropped to the ground and since that day have been ill with all this and not being diagnosed for 8 months, i'm still not convinced with my diagnoses, even though it was confirmed. i love my family also but i hate living this way. if it weren't for my boyfriend and kids, i can't promise i wouldn't try and do something crazy. i always try to keep my head up and know that things have just got to get better and what if, as quickly as this crap hit me, it goes away just as quickly. like i wake up one day and feel wonderful from then on out. i don't know and don't know what to suggest to you as I am in the same boat.

How about think happy thoughts, have faith, hope for the best, etc, etc.

I hope you get to feeling better!!!!

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Replace work with school, husband with parents, and kids with siblings, and I feel the exact same way.

It's like as soon as things seem to get any better the always turn around and get way worse then ever before.

I had to leave school and be taught from tutors at my home. Instead of your 3yo saying you should be better, I have my classmates. I kept being sick to myself. Only my family and close friends knew. So when things go worse and I was almost passing out in school, no one believed I had anything wrong with me. People still text me, almost 4 months after leaving, and ask why I just disappeared. When I say I'm sick, they all say "STILL?"

I agree it's frusterating!!!

Just know your not alone, and we're all here for you. We may not all know eachother personally but I think we have a connection unlike anything else. We can honestly say "I know how you feel!" and that sometimes means more than anything a friend can say.

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Brynne,

I think my son can totally relate to you. In 2.5 years, he has only been to school for 6 weeks. His classmates were also saying 'You're still sick?' and now I think they believe he has moved or something since he hasn't returned. There were also different rumors about him, like he was going blind,etc. He actually got a kick out of that one.

Just don't let it get you down. He tries to find the silver lining...He's glad he doesn't have to be involved in 'drama' that he reads on his friends facebook pages,etc..

Christy

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Me too only I remember a couple weird events prior to the presyncope episodes.

First is getting flu like symptoms and feeling as if I had a fever just randomly in the evenings. I would wake up in the morning then and be fine. This was a year or two prior to any presyncope episodes but not really anything I've mentioned before.

Also something else bizarre. My pupils started to go bonko.

It happened late at night twice at home and I thought it was a fluke.

Then it happened at work.

I was doing my normal morning anxiety thing that I often did obsessively worrying about personal issues at work.

I was passing my meds and I always wash my hands after each person even if I don't touch them before I go to the next out of habit. I happened to look up in the mirror and one pupil looked huge the other small. I tried to keep doing my job but as I walked around I just felt weird left and went to ER I was scared thought I must have a brain tumor or something.

They did neuro checks on me and found nothing wrong. Sent me on to a stat appt at an eye doctor who dilated both eyes and could find nothing wrong with me.

I said-so what do I do if it happens again and he said nothing-no treatment needed.

My director of nursing told ms later this happened to her in nursing school she got thoroughly checked out and they could find nothing and told her it was just fatigue since she had been having to do her clinicals on night shift. So ??? But these are things that aren't really normal that proceeded my first episode.

And it's a toss up in my mind what the exact trigger was...I just had chicken pox at 42 2 weeks prior to my first episode....I had just eaten leek soup...which I know now I've developed allergies-and leeks can cause an anaphylactic type response....my husband who is bipolar was going through an episode where he said it was his Christmas went out and bought a plasma screen tv and a chair to go right in front of it and was getting really flaky on me...so was it stress and did I myself have a nervous breakdown or did the virus cause it or is it simply a food reaction thing? Oh my mind just spins-end results the same.

My life is not what it was before and I still don't have a handle on it.

Too many variables.

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Christy,

I agree with your son. Sometimes it's better to be away from all the high school drama and just focus on what I need to do to get better.

Its funny to see what people come up with, when they have absolutely no truth behind them. All we can do is laugh, it's not worth getting angry over things that just aren't true.

-Brynne

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I know, I'm sorry. :( I totally relate to everything you said. Is it possible that coming off the Florinef caused some problems, like a withdrawal type situation? I don't get why this Dr. took you off since you were doing so well - I mean maybe the numbers were good because of the medicine. Maybe once your body readjusts to the Florinef or if you find a certain dose that works, you'll start to feel better again?

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Thanks friends, your comments mean so much to me. I really do feel so alone in this, when I read about the struggles of others it kills me because I know how frustrating this can be, the lack of answers, the countless drs.

I am sad to say I had a really, really bad night last night.

I went to put my kids to bed, I always lie down with them. When they fell asleep I got up. I think I slept a bit too.

I got up and felt horrible, strong nausea, felt very unsteady on my feet, the normal lightheadedness.

I went to my room to lie in my bed, overwhelmed by nausea, I threw up. I took my blood pressure, it was at times, as high as 120/80 and at times as low as 90/50. It took a very long time for me to fall asleep, I was terrified I was going to die in my sleep. I had pins and needles feeling in my groin area, in my shin area.

I woke up, felt the same, drank some water and had a salt tablet, took my BP until it seemed stable and somewhat normal, then fell asleep again.

I woke up feeling bad. I saw my Dr. I told him everything. My BP was 90/70, my pulse was normal. He was unconcerned.

I was disappointed but not at all surprised. I am feeling very bad as I write. What am I doing wrong? I want so badly to feel better! I'd do anything, anything at all. I've been doing great with the gluten free, I am taking my .1 mg florinef every day. When I feel good I run 2 miles- no problem. I worked 46 hours per week all year! I am on vacation now! I take care of my two kids and keep our apt. pretty clean and neat.

One thing i know that helps is reading all of the posts here and learning all i can about dysautonomia. I love the people here and I'm so glad to be part of this community.

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I understand. I've had two relapses recently and I was just doing the usual, minding my own business and then BAM, major nausea, weakness, shaky, tachy. And I had been feeling pretty well for a year. Now I live in fear of having this happen again in a public place with no one to help me.

The one bright spot that I hang on to is that I have been through all this before and survived it. But is surviving really living? The answer is: Well, yes, for the moment, it is.

I admire you for being able to run two miles and take care of your home and family. This in itself is an achievement. BTW, when my BP is 90/70 I can feel pretty crappy. Do you have compression hose? I put mine on and my BP went up 20 pts both ways. They really did help even though they are hideous looking!

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718mom, I am sorry you are feeling so poorly at the moment.

I just have a question for you about Florinef. When you first started taking it last year -did it take a while to build up in your system and for the effects to be felt? Or did you feel instantaneously better on Florinef?

I just wonder because I have heard that for the occasional few, it can take a long time to build up in their system and for the effects to be felt. Someone posted a while ago (either or this site or another) that they stayed on it for 6 months and felt nothing until the 6th month.

I just wondered whether this could be what's happening for you...

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lotus flower, what a good point! Yes, it did take some time to build up, maybe like 5 weeks? I don't remember but it was not instant. It's strange, i am noticing more and more neuro type of symptoms, back then I just was potsy, head pain, blood pressure low at night, light headed here and there. Now I'm just...a mess.

lol, I am at my very worst when I'm sitting or lying down, it is so unfair! All I want to do is have a nice relaxing sleep, or sit and watch a good trashy TV show, both of these things elude me.

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It is strangely comforting to know that others are having such an awful time of it, too. Too bad we don't all live together! We could take care of each other on good days, lol. :)

I am sorry that you are dealing with this, and I can completely relate. I was doing relatively well on the Midodrine, but now I am back to where I started. The quality of life issue is a challenge, and I have had to really rethink and rework my goals (again).

It is a very lonely place to be.

I feel like if we aren't "dying", docs don't really care. They completely miss the point...that we were functional, vibrant, "doing-stuff" kind of people before we became ill. None of us WANTS to lie in bed most of the day! How would they feel if they felt like they had the flu every day? They don't seem to care that we have pain. I have yet to be offered pain medication for my nerve pain! How is this possible? It is maddening.

My friends all feel helpless. They listen, but they can't really wrap their heads around it. Shoot...some days I can't either.

Anyway, I hope that you find a balance with your meds and maybe a doc that has more compassion.

Love you.

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