pat57

great pics.

thanks for the pleasure - enjoyed them.........

My Dr. ordered Advil gel caps 2x a day for 8 days (WITH FOOD). It worked.

This may sound silly but make sure your bra is not to tight and trash the underwires -lets say for a month.

It matters.

Hi,

Melissa,

Yes that was me with the better work hours. I used to go to bed about 2am get up at 6:30 get my daughter to school and get more sleep after that. I never felt well, never.

When I complained to my Dr. he said I needed 8 hours consecutive sleep. Huge difference. I love my current job. - most of the time!

I'll send you a message re publishing.

Thank you for the kind words about my success in communicating.

Since you read all the posts- no wonder you are, shall we say- tuned in -to how long or short some are.

Lastly, I think I'm guilty of pretty much any defect or shortcoming socially. I will say on relatively rare occasion tho. Anyway that helps me let things go too.

Speaking of social issues here's something I still LOL over. Nina came in where I work. I said to her, "are you Nina" and while she was looking to see if she was wearing a name tag- OR WHAT, I gave her a hug. In the mean time she was receiving it from a perfect stranger. LOL, I realized after the fact what I had done.

I did see that Sunfish, and took it that you meant "you looked well "generally, to others when wearing make-up.

It was after my second post that MelissaReid replied even tho she quoted the first post that I thought make-up might mask the "white as a sheet" skin

during an episode.

Hope that splains it well enough. I am not a good communicator - generally speaking. Partly because typing is laborious for me. I enjoyed your "I'm never bored post" which I throw out there because I want you to know, I was at least trying to pay attention to what you wrote. I went and checked it out, and read the WHOLE thing. Now that is an example of some fine typing skills!

Speaking of that post - and I said this to you when we first "met". You have a lot to offer the chronically ill- having walked a path others will and being able to

express so much so well. I think your journaling should be seen by a publisher.

1. Name: Pat

2. Age: 51

3. Dx: first pseudo seizures, then epilepsy, then OH and NCS

4. Age at dx. 41 with pseudo seizures - 45 -OH and NCS

5. Where you live: PA

6. Symptoms at worst: Dizzy unless laying down unable to stand safely ,that is ,without stumbling unable to sit without being dizzy - seizures

7. Symptoms at best: I feel best going full tilt and have done "crazy" things like cut down big trees with a pruning saw. Also broke up and removed slab of concrete single handedly from driveway. Hundreds of bags worth. Took a while.... That was before Norpace. Such behavior is not necessary to feel ok now. I do still feel best in motion.

8. Medications/treatments, etc. that didn't work for you: l

epilepsy meds, BB, florinef

9. Medications/treatments, etc., that do work for you: Norpace - must have it - compression stockings - water and salt loading - St. Johns wort

That's a good point Melissa.

Darn... so sorry to hear this, and like you- believing it will work out after fine tuning.

When I feel faint, I do faint. Invariability the bystanders are more freaked out then I am. Also I get a lot of ,"you turned white as a sheet."

People who haven't seen my act may tend to think I'm well, or exaggerating my struggle with the sensation of heavy legs. I no longer care what

these people think, I tell them whatever is pertinent. I could care less if they believe me. However this indifference to others opinions is an acquired ability.

Stemming mostly from the fact that I'm 51 and I refuse to let someone ruin my day. I will sooner write them off as a jerk then let it bother me. In the end I know what I'm talking about- they don't. And I do try to be nice but I will tell them flat out- I don't have the time the inclination or the energy to debate.

It seems to me my attitude is really the most convincing factor. One thing I say often at work is, I can't stand still, it may cause me to faint which is way I wear these. (I point to compression stockings- at the ankle. ) There is no debate. I can see them thinking but there is never a reply. I state it clearly as fact. Everyone knows thaT i MANIPULATE MY bp THROUGH movement, my extended family seems to look askance at my difficulties sitting through a long meal. My immediate family have all seen my act. I don't need anyone elses support!

I myself make judgments based on visual cues all the time. There is no doubt that I judge many an ill person as well. Starting with my own children when they want to stay home from school- sick. So I don't mind that others think I look well, but I do mind if they choose not to believe something I tell them.

That's interesting. You potsies don't turn white then. Because when I feel faint I turn white, people can see it.

NCS no POTS - here.

Mine too. 4 of them, but NCS not POTS.

she should not take decongestants unless Dr. oks it. I have a minimally prolonged QT and take a med that can cause that. My heart Dr, says NO

decongestants .

Good to "see" you, I was wondering how she was doing.

I have to say no to your questions. I very much hope she finds an accurate diagnosis and effective treatment .

good luck.......

fingers crossed!

sometimes people do that (subconsciously) to test the others reaction. I can't say that's the case, but I have indeed heard that its normal at some time in a relationship to have one "pull away". "They" say further, it would be a mistake to pursue the person because they then- continue- to pull away.

Whatever happens - it will get better.

(sara)

I guess bradycardia was, and is most worse symptom. As long as I take my Norpace, I'm ok.

I have OH and NCS- no POTS.

Have they checked your liver functions? If the liver is not clearing toxins from blood you will itch like mad.

http://images.ask.com/fr?q=strep+throat&am...%253D0&qt=0

there's some info on Dxing strep

Hi,

I don't have POTS but I know stress like that would wear me out. Are you also doing a lot of clean up?

And is it effecting your sleep? You certainly have good reason to feel whooped.

good luck!

What a jerk.

Hi Susan,

I just want to say, I'm sorry that all this is going on. It must be heart wrenching.

keep us posted.

well, I have noticed that "I lose water" in early fall. I would only be guessing about reasons, I can only say I pee alot for about a week.

I get itchy red cheeks when ever I wash windows. Its the spray - apparently a bit gets on my face. Been using a spray cleaner?

just a thought.

lolo,

Norpace was the answer for me. I was also fainting with no warning. As I so often say, I don't have POTS- I have OH and NCS. But

maybe its something to ask your Dr. about.

Sorry to hear you hurt yourself.