Oh, one more thing, they offered me a EPS electrophysiology study, "if I was REALLY concerned'----which meant if I was really a hypochondriac about this....but, I decided to wait on it until this gets worse....I am not real excited about an invasive procedure especially if this isn't bad enough to have sent me to the ER yet. Sounds Mere, like we have a very similar profile. If you are on verapamil, do you have SVT as well?

Since I went on the beta blocker now my calves hurt really bad! No winning.

Your stuff will show up on the autonomic testing regardless of how you feel. I feel whacky ALL the time now. It is my new normal....but hey, I am still here!

Also, I go from bradycardia to this SVT....40 to 300 in a second, lol. Maybe I should go out and hold onto the electric fence again!??

I am sorry Cyclelops, from reading your posts, I know that you suffer terribly... Yes, I do have SVT. It was the first symptom that I had 17 years ago. It is usually under control - until I have an attack. Occasionally, I have breakthrough tachycardia, but usually when I have migraine or these attacks. I think the migraines are related too. Sometimes, they herald an attack.

It is nasty stuff... and there really is not much available for relief. I know I could go to the er... but then I think, what would they do? Tell me I am having anxiety attacks? That is what they used to say years ago when I did go to er in the beginning.

Mere,

I DO hear your feeling that you will 'check out'. I have said that a million times in the last 10 years....but...I am still here! I guess that merits a hooray!

The huge KEY to living with this condition is an acceptance that I indeed MAY check out, and not much I can do about it! I would so love to be 'normal' for one day. (On the other hand, if that happened, I would bemoan not being normal for yet another day.)

Yes, it is depressing...but it is what we have been dealt. At times I want to bop some healthy person on the head, just for being healthy!

Yeah, me too... I am still here. After the flare passes, I feel like such a hypochondriac. Also, to top things off, I look perfectly healthy. And I mean healthy. For most of my life, I was athletic, very thin and youngish looking. Now I have that belly bloat, have aged more than my share and am about 30 pounds overweight.

You are right, we just have to learn to accept it. Though, I still feel bitter about it...and feel jealous of those who are fit, healthy, have a job, and never have to feel bad every day. I wonder how most would feel if they felt like they were going to 'check-out' now and again?

Just smack me now...

mere

You can borrow my foam bat.....as for some healthy person to bop...you have to find your own!

I wouldn't smack youuuuuuuuuuu!

Hey, I never knew a bizzare disease like this one existed! I never heard any one talk of symptoms like these. Then add insult to injury....looking good when you are this freaking sick!

I have just resigned myself to living like Alice in Wonderland. My new normal....just don't rock my boat...they sky is falling.....the snow is burning....hot is cold and cold is hot, and what isn't moving every which way is not!

I don't have a cat, if I did, I am sure it would disappear except for her smile....

You would think that we were living in the "drop-in, drop-out" era of the freaking 1960's... except this isn't any fun, or free... More like, welcome to the bad trip...

By the way, I will be paying particular attention to my three "girls". They do have the Cheshire grin from time to time, or is that just what i see?

Mere

I say this because a relative by marriage got 'something' And, thanks to all the info on this site and others? I related to the relatives that well? It mite be an immune thing? And here is the St Louis Univ Site? And this part seems to 'fit'? And it was Sarcoidosis! I do believe they have a better appreciation for my CIDP as well as my learning and memory skills [what's left of them?] as a result. I kept saying don't give up! They had a neuro who did not give up! Bless him? He's in Mich if anyone wants to know... I'm just glad she didn't give up! And better yet? GOT A DIAGNOSIS! That to me? IS THE GOLD!
Mere? The Twilight Zone music is appropriate but the Outer Limits truly is what we deal with when we deal with the medical profession!
Honestly tho? I don't know where neruos and other docs are coming from when they 'say: It mite go away.' Yeah, right, sure, OK, UH-Huh!
Tell me another joke, why not let us into the 'chronic world' gently? W/ resources and therapists who are trained in this, and not those who have no clue? It's kind of like learning how to type all over again!
Hugs to all and to YOUR STRENGTHS! If we were stupid, we'd be worse off? No? But we aren't and we aren't taking being 'down' gracefully!
Find me an ***[the animal], and I will kick his butt! Enough said! 's -j