Jump to content

Wishing There Was A Clinical Definition Of "feeling Weird"...


ophelialit
 Share

Recommended Posts

Hi, all...

I haven't been on much lately because I've been SUPER busy (worked 72 hours last week) and traveling quite a bit...and I was feeling relatively good for a while, so I had that cocky "Look at me! I'm awesome and totally normal!" thing going on. Welllllll, ever the jokester, the universe threw me a MAJOR flare last week following a week-long trip to Disney World...I mean, I had every symptom in the book...I kept expecting my head to spin around a'la Linda Blair in the Exorcist. Major GI issues, fatigue, dizziness, panic, flu-like aches, low grade fever, etc.

That's all finally subsided, and now I'm left with chest pain and tachycardia, my two loyal subjects; I'm spending all day reasoning with my brain as to why it's highly unlikely for me to be having a heart attack (I'm sure we all have these conversations with ourselves on a frequent basis, but i have yet ANOTHER appt with my cardiologist on Monday) and trying to be somewhat normal.

The absolute hardest part for me is to explain how I actually FEEL at any given time when I don't have a specific symptom to point to; I just feel WEIRD. People understand headaches and dizziness, they do not understand weird. How do I define it? Ummmmm....gee, I feel kind of "creepy-strokey-woozy-freaky"???? Yeah, people don't get that--I'd love to be able to pull out the Merck Manual and point to a definition, but I don't anticipate that happening any time soon. Anyone else know what I mean? Any other "weirdos" out there?? :wacko:

Link to comment
Share on other sites

Do you mean the feeling like you are living your whole life in a Salvador Dali painting where clocks ooze time just like you do? Yes I totally get the feeling you are describing. The best I've come up with for the docs is either: it feels like I'm having a heart attack and a stroke at the same time, or, it feels like my reflexes are a portion of a second behind the rest of the world.

Link to comment
Share on other sites

Yesssssssss! Feeling I'm having a stroke + heart attack = I LITERALLY feel like I'm losing my mind....like I'm 4 seconds away from tearing off all my clothes and running down the street screaming....of course, I don't have the lung capacity for that kind of activity. Ha! ;)

Link to comment
Share on other sites

Yes there seems to be no understanding for what i call felling "ill". I just feel ill ! and like you it is chest pain and a sense of a core instability like my body is not functioning properly and misfiring on two cylinders. And no one takes it seriously because it is so ill defined. I too often wonder if this is what other suffer. And i wonder about mast cell activation / allergy / gluten intolerance. Something throws my system out.

Link to comment
Share on other sites

Yes! It feels like a mix of having the flu and being on the laughing gas they give you at the dentists. Disoriented and just... bad. I hate telling the doctor I feel wierd because of course they just give that blank stare.

Link to comment
Share on other sites

Yeah, me too. It's frustrating when doctors and close family has a hard time understanding the symptoms we all have. Brain fog has been with me for over 6 months now and won't go away. Doctor told me I can't drive and I had to sign a paper stating I wouldn't drive. My weird feelings are brain fog and just feeling like I'm in la-la land part of the time. Then, I just have this "ill" like feeling and look healthy on the outside, but totally don't feel it on the inside! Frustrating....

Link to comment
Share on other sites

Me too!! Mine is just like how Katybug described....stroke and a heart attack at the same time......it feels sooo awful and I can't believe I can feel that on the edge and not have anyone realize it by looking at me...... I always think wow with all of these symptoms how would I ever know if it actually was a heart attack or stroke??...scary :(

Link to comment
Share on other sites

Brethor9....I wonder that ALL THE TIME...literally! I spend so much time convincing myself that I'm not having a heart attack or a stroke, I have no idea how I'd ever be able to convince anyone that I WAS! If I were to judge only by symptoms, it would seem that I've had about 498 heart attacks in my life....since the number in reality is zero, I'm fairly certain I wouldn't know an ACTUAL heart attack if it jumped up and bit me...soooooooo frustrating!

Link to comment
Share on other sites

I hear you! Same thing here...and most of the time I don't have the energy or the clarity of thinking to try to come up with a way to describe how I'm feeling so I just figure it's too much trouble and skip trying to explain it to the doctor or anyone else. The people close to me know when I'm really bad by the fact that I'm barely moving so they don't have to ask anymore. If I CAN move, I do move and I figure if I'm still moving- I'm not dead yet, so it's all good, right? LOL :)

Link to comment
Share on other sites

Wow, I ca totally relate to all of you. You guys are silly, I like some of your explanations. I feel often as though I'm having strokes and heart attacks and yes, how would we ever know if we really were or if it was just our "normal stuff". I feel WEIRD everyday and I wonder if I'm still have way undiagnosed because of this because when I tell a Dr that my head feels "weird", they start writing the crazy pill prescrips, you know. I try to explain and my best explanation, like westernmass, is seizury!!!!!

Link to comment
Share on other sites

So glad for this forum (yet again)!!! Just the other day, I was feeling rotten and very sorry for myself after days of feeling rotten, and my husband was giving me a funny look and asked "well, what exactly do you feel like??" It didn't help that I was a mess when he asked, but I just kept saying, "It's just so hard to describe... I wish I could describe it..." Creepy-strokey-woozy-freaky does a pretty good job of it, as does seizurey :) . I also end up feeling very over-emotional and frustrated - like an angry toddler on the verge of tears.

Link to comment
Share on other sites

Katybug, I KNEW I shouldn't have stopped using heroin!! Ha! I'm kidding, I'm kidding...even the vague concept of using recreational drugs is so utterly foreign to me! When we have random drug screenings at work, I always kind of laugh and say "I can't handle a child's dose of cough medicine let alone the "hard stuff"..." Sighhhhhh....it is indeed disturbing to know that our systems behave as if they've been wounded or altered in some way....

Link to comment
Share on other sites

thank you thank you thank you for this post.

I've always had a hard time explaining how I feel ever since POTS hit me. It,s frustrating for my loved ones who try really hard to understand and help; for my dr who wants me to be more specific than stoned/drugged/weird/off/horrible and the such; and mostly for me because I was under the impression that nobody understood me - now I know I'm not the only one.

Like you guys have said - I probably had several heart attacks and at least as many strokes at least in my mind, thank goodness none of them were real. Truth is, this "weird" feeling is really taxing on my body.

Alex

Link to comment
Share on other sites

Yeah, here with you on this one. Only one time I did think I was having a heart attack and when I went into the ER and nitroglycerin helped a whole lot and had three doses of it ---thought it was a given. Had an IV and an overnight nitro patch. Guess what . . . .no heart attack. It was connected to MCAS and POTS (probably Kounis Syndrome - from what we can figure). So, docs have seen me at my worst and it's still all too confusing to them. Ha!Ha! How do you explain that?

We're all in this boat together and your descriptions fit with mine. All day today, I've had that "I'm going to cry any minute" and that awful, jumpy, nervey feeling of the Hyper overactive NE. And then there's the external tremors and my whole insides feel an internal tremor too. Ugh, just hate it.

Issie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...