ckteach

Well written and I agree with all you said....it's hard to keep plodding through life just waiting for a cure. Your poem is a great way of expressing this frustration. We're all in this together.

Has anyone studied why it is that girls seem to be affected by this primarily?

Also- mididrone seems to be the drug of choice. I am starting it today. Are there major side effects?

Also.... anyone get dizzy trying to track objects with your eyes? I know my neck is involved in this somehow....

Thanks and happy holidays!

Hi Cindy! I'm sorry you're feeling icky. IT is possible to have false negatives with tilt tests, but often times doctors will conclude things all too quickly.

Did you know that some people don't get rate changes for the first ten minutes or even half hour of standing? Since you are not fainting, it might suggest that your pulse or bp change more gradually than abruptly. I wonder if just doing the poor-man's tilt (i.e- just standing up!) in front of a Doctor for say half an hour or fifteen minutes might show the rate changes?

Have you noticed that you get symptoms after doing certain things? Maybe, climbing stairs? Or walking for a very long period of time?

Maybe you coul have an exercise tolerance test, since one of the symptoms for some folks can include exercise intolerance.

Good luck, and let us know how you get on.

:-)

Hey thanks for the thoughts. It's so great to know there is advice out there from all of you.

Hi-

You all seem so knowledgeable! I had the TTT three years ago after fainting in my home and I was fine standing during the test. They injected me and then very quickly my heart was pounding out of my chest and I started to faint. They stopped it by raising my legs and laying me down. I went on like that for 3 years with imbalance and dizziness that came and went. I haven't fainted since.

Now I have soooo many of the symptoms you all do. Especially racing heart. palpitations and dizziness, oh, and brain fog! I was told recently by a cardio guy I probably have orthostatic intolerance and my neuro this past week layed me down anbd stood me up and said that my rates didn't change at all although I only stood for 30 seconds at the time.

I would really like to get a handle on what exactly I have and would like to know if there are other tests that can help to diagnose an autonomic disorder? I am going back to the cardio this week (he does specialize in POTS) and I would like to know what to suggest.

Thanks!

Cindy

Hi everyone-

I'm fairly new to this forum and I have all kinds of symptoms that come and go and I'm wondering if anyone else is like me...take a look and let me know...

Feeling cold a lot

exhaustion that just "hits" out of nowhere

shaky legs

eyes that don't track well

impatient

prickles in chest, arms, and legs (like having the chills all the time)

Thanks for your input!

Cindy

Cindykron,

I stopped fludrocort for one very important reason, and several lesser reasons.

Important reason: It was irritating my interstitial cystitis - ouch - for some reason it caused a flare of pain on urination and consequently, pain in my back, and forced me back on my strict IC diet.

Other reasons: I did not know how to handle being sick and taking/not taking the med because of inability to eat due to illness.

I was afraid that my beginning osteoporosis would get worse.

I am getting the same effect of increasing my pulse pressure without taking the med. If I swig 1/4 tsp bicarbonate of soda in 1/2 glass of water AM and PM, my blood pressure/volume seem okay.

I'm recovering from a bout of illness that is very atypical for me and I attribute it to the effect of the fludrocort possibly messing with my immune system? I don't know this for sure.

If and when I try the fludrocort again, it will be the name brand and not the generic to see if that will determine whether or not I get an IC flare.

I hope I didn't bore you. Taking meds is a touchy subject for me. I react poorly to many of them.

Not boring at all. Very helpful in fact. I was told to take .1mg. but I've only been taking 0.05mg. I'm a baby. Can't say it's helped though.

Thanks!

Normal for POTsy people. There may be factors at play that have caused you to "backslide". Some things to consider: amount of sleep; additional stress or activity the prior day; new medicine; hormonal changes; ingesting junk food (full of simples sugars, chemicals and dyes); new supplement; big change in the weather; big change in blood sugar, going from being very hungry to eating too much; you are fighting a cold, flu, bug, whatever, and you don't know it yet but your nervous system does; who knows?

Do you get the drift? Our nervous systems seems to be more sensitive than average to any change. It's a real pain, I know. One minute you're fine, great. The next, whammo!

Sometimes it's difficult to understand WHY?

Try not to drive yourself crazy trying to figure out the answer unless it's obvious. Do your best to adjust to whatever comes your way. And, above all, remain flexible, in what you expect of yourself. That's the key.

Hang in there. I understand.

Can I ask...why did you stop fludrocort?

I did have a ton of cakes and candies yesterday and a bit stressed too. I'm separated and my hubby was here at the house while my brother was in visiting from Boston---tense situation so maybe that was it too. It's crazy how great my day went. I was afraid to go to sleep in fear of what the next day would bring and BAM!

Do many of you have abrupt mood changes or feel your moods are hard to control? I feel snappy and tense a lot. Being a teacher, some days it takes all I have to keep it together to stay calm and focused.

Hi all-

Another question since I'm new to this. I had a great day yesterday. Much more balanced (which can vary day to day, hour to hour), more energy, great mood, like my old self. Today I feel like a truck hit me...foggy, imbalanced, muscles shaky...I did nothing different today than yesterday.

NORMAL?

Hi-

Just saw a doc a few weeks ago that specializes in autonomic disorders. He highly recommends a cranial osteopath that he and his family see. Apparently his daughther has our disorders and was helped a lot by this process. He swears by him.

Has anyone done this? What is involved? Did it help or aggravate? I'm already chronically imbalanced and I have neck issues. So much of the time I'm scared to death to let anyone touch my neck for these reasons...certainly not a chiropractor...although I realize that's not what an osteopath does.

Thanks!

Has or is anyone teaching with this syndrome? Any tricks to get by and how long have you been working like that? I'm still teaching but it's getting harder and harder...

Cindy

Hi all-

I am new today, but I have read so much on this website already. Wondering if anyone might be living a parallel life as me.

I actually started with imbalance about 7 years ago, but that was it, for a very long time. I was diagnosed with BPPV (Benign Postionall Vertigo) and was given an Epley Maneuver at Johns Hopkins 3 years ago that helped. Doing pretty good after that but still days with shifts of imbalance throughout. I had occassional numbness and weakness in the limbs, trigeminal neuralgia (facial pain), and long-standing neck pain (bulging discs) throughout as well. I've been working full-time as a third grade teacher- good days and bad days- but was getting by. Oh, and I have Hashimotos and positive turned negative Mysathenia Gravis and Lupus. Lots of weird stuff...like most of you it seems.

Now it all seems to be escalating- imbalance very variable, palpitations, legs that always feel "prickly", and most of all to move my eyes or neck around too fast will absolutely cause imbalance- hard as a teacher when kids are moving around you constantly vying for your attention. Seems like they come at my from all sides . When standing still I need to hold a wall or lean...standing still is hard...I teach constantly moving all the time. Are there any other teachers out there dealing with this?

I saw a doc in Media, PA. Nice man and very attentive. Deals with autonomic disorders and says I don't have POTS, but definitely orthostatic intolerance. Is that progressive? He put me on fludrocortisone and potassium. I started yesterday. If I get side effects, should I know by now?

Just wondering if anyone is leading my life? I suspect many. THANKS!

Cindy