Is It Just Me?

[Yolaclover]

So, last night I had these issues, like I lie down and my head hurts, feel lightheaded, feel a sense of fullness in my head, particularly the lower back part of my head. Felt as if I was going to die, like the blood was not getting in my brain. It was so scary!!! It has happened from time to time in the past month or so. Is that a neuro issue or a cardio issue? I hate the vagueness of these symptoms!!!! I thought once I got back on the florinef that would go away, but no, it is not! I have been on the florinef for about 6 days.

Also, since yesterday my left eyelid is all twitchy.

I don't understand why my body was perfectly fine in December 2009 and then it just flipped a switch and became completely horrible. Ineed a good cry, this just *****.

The worst part is my cardio swore I'd get better.

I'm not getting better.

Sorry, I can't cope with this today.

[enko]

Hold on *hugs* I wish I could help you in some other way, but unfortunately I don't have anything smart to say

[rach73]

(((((hugs))))

You are allowed to get upset with it all. I remember when I first got ill and a dr told me I would be right as rain by friday. I assumed he meant Friday 12th January 2007 as that was the week I saw him! LOL I'm still waiting for the Friday and I wont give up hope that it will come one day.

I wish there was more that I could add. Hang on in there.

Rach xx

[Yolaclover]

Thank you enko and Rach

The thing that really gets me is when I was lying there in bed dying my BP was perfect!!! How? Why? what is going on?

I took a shower, had a coffee, took meds, put some make up on. Feel better but still stumped by my wacky body.

xxoxoxo

[HopeSprings]

I know, it's crazy isn't it? And it's the bizzarity (is that a word?) of it all -- the inability to make sense of the symptoms, that is most frustrating. I have the pressure in the head thing A LOT and when I am especially dizzy, I feel the pressure most in the back of my head too. Doesn't correlate with BP for me either. I was feeling pretty dizzy and pressury yesterday too and I wonder if it has anything to do with all the rain we've been getting. Maybe something to do with barometric pressure? Glad you are doing a little better now.

[misstraci]

I'm sorry you are and were feeling so awful. I get that pressure and awful feeling in the back of my head but its always one side (the left). It is so weird and scary! I often feel like "i'm dying". The worst is when I try to explain these feelings to a doctor or anyone for that matter, they kind of look at me retarted and turn their head sideways like a dog. It makes me look like the foolish one but there are true issues going on and no one understands. I would not know if it is a neuro or cardio issue but I'm personally thinking about going back to the neuro for my similar symptoms, maybe give them a try and see what they have to say!!! Feel better please

[toddm1960]

This is what gives doctors such problems diagnosing us, unless they're aware of dysautonomia. I had one doctor tell me "you can't possibly have all this going on at one time, you're making it up" Needless to say I fired him that day, but that's a whole other story....lol Hang in there, things do get better as you understand how your body reacts to things. When I lay down I have the opposite problem, I feel like my head is filling with blood, my sinus fill and I can't breath. Remember part of dysautonomia is vascular, we dilate or constrict at inappropriate times causing many of those problems. I hope things calm down for you and that you find somethings to help.

[Yolaclover]

Thank you so much for replying, sometimes my symptoms really get wack and it upsets me, I do not understand them and they feel like I'm going to die! Why do I feel worse when I lie down? It seems like all of the POTS people need to lie down to feel better. I do not get

that!

xoxox

[lieze]

I just had that feeling a little bit ago.

I totally don't get it.

It's enough to drive a person crazy.

( no offense intended )

[Yolaclover]

lieze it is ridiculous!!!

Okay, so, some nights this does not happen to me. Does that mean it is most likely just a blood pressure related thing and not something more....horrid?

[Sarah4444]

When I am "just" feeling POTSy I feel better when lying down, but I have also had long periods of time when I feel worse lying down, especially flat on my back. I have a theory about it. When I had my catecholamine levels tested, my norepinephrine and adrenaline are low when supine, very high when tilted/upright. It feels like I have been having low level anaphylactic reactions for so long that my body coped by creating this high adrenaline state to offset this. When I would be having terrible trouble lying down I would find sitting up would make me feel better - I feel like I am having anaphylactic symptoms and then changing my body position to upright and raising my adrenaline levels decreases the anaphylaxis in the short term.