Strange Days Indeed...
 

Just feeling sorry for myself. I have had a terrible attack of dysautonomia over the past few days. If testing is to be done, now is the time. But things don't work out that way, do they...

It started with my bladder - feeling the need to be emptied every ten minutes, or so, and in large quantities. Then some of the worse of it yesterday. My heart yo-yoing all over the place tachycardia to slow pace. Every time I get up, it gets worse. I get those white dots in my eyes almost constantly. And the pain... My stomach also stopped working - the dreaded gastroparesis. Also, severe nausea and temperature fluctuation. My arm always hurts, but my fingers started hurting on the fingertips. They feel bruised.

The only thing that helps is taking an ambien, laying down and going to sleep. This seems to be the only relief. Sleep and time.

I guess I just needed to unload. I hate it when I feel like this...

Mere

Sorry about your attack. I get similar stuff with the heat in the summer and if I sleep on my stomach, or lean a certain way. Certain things trigger my symptoms or keep them at bay(not always easy to mind this or work with but....)

I was wondering if you noted anything that might have precipitated your current state? I.E. eating something different, bending a certain way, sleeping differently, spraining or straining something, exercise. Maybe exposure to a certain herb or chemicals and/or life events, etc.

Gosh, that sounds awful.

I really would have your doctors take a second look at the verapamil. You know it might be a culprit in all this.

Slow GI-- a very typical side effect
orthostatic hypotension-- very typical

One should always re-examine any drugs they are taking for
hidden long term side effects. The obvious can always sneak up on you!

Mere, sorry you are feeling funky.....such is life with dysautonomia....I have developed SVT and they have me on a small beta blocker dose, which in my opinion is not helping matters....I can still feel the rapid take offs, which they say are up to 250-300bpm (but not sustaining). I have accepted the fact, that I am going to take a digger one of these times I get a gray out.

Foo is all I can say. I will say a foo for you too....that would be foo, foo. (Sounds like a French poodle name.)

Hang in there. This crud comes in waves. I agree with MRSD.....check the meds.

I went shopping today, with my friend of 25 years, who has sarcoidosis....I say the only thing worse than being me, is being her.....she says, it is worse to be me. I dunno.

She got breathless trying on dresses (mother of the groom) and I couldn't help with the zippers....could not see, and could not grasp the zippers and clasps. I laughed and reminded her we used to bike 30 miles at a pop years ago, and now, we are exhuasted trying on gowns! Foo, foo....and one more foo for her too!

I wonder why so many of us are sick??? (With roughly the same crud.)

Oh, one more thing, they offered me a EPS electrophysiology study, "if I was REALLY concerned'--:mad:--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!??:o

I really cannot think of anything that might have precipitated this. That is what I have been thinking about. My husband complained of some tummy issues earlier this week, perhaps a small viral infection spurred it on? Usually, I have no idea what causes these attacks when they occur.

The verapamil seems to help me at other times. Usually keeps my heart rate low and steady and seems to keep the migraines minimal. I used to take a beta blocker, Coregard, perhaps it would be better better. I will question it with Dr. Khurana when i see him.

Today is better. I am so relieved. Not great, but better... At least I don't feel as though I am checking out... Not to sound too dramatic, but the feeling it just horrible.

Thanks for your thoughts...

Mere

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!:o

Foo Foo, Poo Poo, Doo Doo to us! But, sarcoidosis is nasty. Sorry to hear about your friend. My younger brother had it and then it did get better. It is now non-existent in him. Sometimes, it goes that way... Lucky for him...

I don't know why there is so much illness as you you mention. My husband and I wonder the same - especially many people we know with autoimmune disease... Were we exposed to something in the 1950's and 1960's? I was a Navy brat. Was there 'something' in my immunizations? You could get paranoid if you think about it too much... (Twilight Zone music). Or better yet, The Outer Limits.

Mere

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. :nopity:

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