skiberthoud

I think you did a good job of describing it. Maybe you need to descibe it the same way to your healthcare professionals. And yes there are different fatigues - the whole or it's parts can experience fatigue. Hang in there and I'm sorry you've been feeling misunderstood...

I, too, have noticed a change in my appetite. I will go whole days without being hungry at all. I make myself eat somthing nutritious anyway. Somedays I chaulk it up to nausa, ( i do have days that i just can't keep anything down) but there are days that I'm not nauseous and don't feel hungy. I wish I had the chocolate issue - just the thought of it makes my stomach turn these days, sad but true. At least I've lost all the baby weight! Something good has come out of all of this! LOL

starby. I will tell you that sometimes I have HR issues and sometimes I don't. Sometimes I have lots of symptoms, sometimes I have only one. And sometimes I will go days feeling reasonably normal. I also wonder about the same thing...I go for my testing soon and wonder how the results will be if i'm having a "good day." For me, I know something is definately not "right" but i can't control the outcome of the testing. I just have to wait to see what happens. I do believe that the underlying problem is still there, even if we aren't feeling it's effects at the moment, so perhaps it can still be detected by their "sensative" testing. I also asked about stopping meds prior to testing but was told it wasn't necessary. I still don't understand...trying to find more explanation. I hope you are able to get a referral and an appt soon!

I see why you are grouchy! It's like betrayal when someone who is supposed to understand you dismisses you. Sorry you had that experience. Curious...is this specialist at BI? Hopefully tomorrow is a better day!

Nela, sorry your miserable and frustrated this morning. Understandable, though. We all have our days. Just remember not to care what others think or to "think" we know what they are thinking. You are the only one that lives your life - no need for judgement. Plus, the whole fact that you want to accomplish things proves that you're neither lazy nor crazy. You're trapped in a miswired body -it's not who you are. Chin up. I hope something nice happens for you today!

Maxine, I don't seem to get a dry mouth when this happens. I'm sorry you had such a rough Friday! Do you have intermittent episodes where your symptoms come in clusters or seem worse? Do you notice a correlation between that and your cervical instability issues? I have yet to find any pattern as to when my symptoms are at their worst. I've been keeping a journal. Maybe a pattern will appear eventually. I hope the nausa has resolved itself and your Monday is better than your Friday Thanks for your reply Tabitha

Hey Angela. Yeah, hate the tremors. They are exhausting. I haven't tried Clonazepam. Thanks for the tip. I do take Lorazepam (a diff benzo) which doesn't help with any of my body symptoms but def makes them easier to deal with. I only take it when things are really bad. Do you have the tremors often? Sorry you have to deal with them. Take care and thanks again! Tabitha

Hi. I need to ask if anyone else experiences something similar. To let you know, I recently have seen an neuro who says it appears I have dysautonomia (his guess is "immune-mediated") and am scheduled for my autonomic testing later this month. Here's my whole long story: first ever episode started last november on vacation. acute onset of dizziness, panic feelings, extreme heat and a headache, then my body proceeded to purge itself of eveything inside it and i started with full body temors. after a little while my body would go into "recovery mode" as i call it - extreme exhaustion where I can't really talk and move - for a few minutes and then the cycle starts again. This lasted for about 2 or 3 hrs. ER doc said I had laberynthitis and sent my home. Stayed dizzy and nauseous and within a week had a raging sinus infection and double ear infection. In about eight weeks my infections and other symptoms cleared. I thought it was all done. I did continue to be sick with everything my kindergartener brought home from school until May. In both January and April i had smaller versions of the episode that happened in Nov - they were much shorter in duration and not quite as severe. Then in June had another big one and since then I have daily symptoms like dizziness, nausa, GI issues, BP jumps around, I'm orthostatic (but never passing out), blah blah, all the things you know about all too well. But just within the past month I have had three more of those really big bad episodes, just as described above. Haven't seen a pattern or trigger. I can tell when they are going to happen, like and animal can sense an earthquake and i just "ride the wave." But i want to know if anyone else experiences something similar? I'm curious as to why I'm having more? The neurologist i saw put me on Mestinon which seems to have no bad side effects and has made it so I have good parts of everyday and no more GI issues. On to the next batch of testing... Any thoughts for me? Thanks.