gertie

Hi puppylove, When I get that feeling I feel like my knees turn to jelly. I've done that when in a crowd & thought it was a reaction from perfume. I've also done it when at home alone. I haven't figured out what causes it, but think it must be a drop in BP or heartbeat is irregular. I'm always afraid I'm going to faint or have a seizure. As many times as I have passed out in my life it still terrifies me. I think it's because I'm not in control. Hope you figure it out.

Ditto what Katie said. The waiting is always stressful. Hope everything turns out like you want.

Thanks everyone, you're the best. I think I'm finally calm. I told my DH this a.m. I was taking the day off & he could do the dishes etc. He hasn't moved from in front of the tv yet, but I think he will. He was complaining yesterday about his "sore thumb" & I couldn't help but laugh. I told him when he got a real health problem we would talk & walked away. The perfume issue will never be completely under control here. Ever so often I go through my reasons for no fragrance, they do some better, then we start all over again. Hugs to all!

Thanks Jana, I don't have any family support because no one gets it & I can tell they do not want to hear any complaints so I keep silent. When I do have guests, even family, they have on so much fragrance I'm sick for a long time. I've found there's no need to request them to leave it off. Rather than insult anyone by mentioning it I try to cope till they leave. As you can see I am very hard to live with. I'm to the point I'd rather be alone. Well, enough of my pity party.

I've been told because I have seizures I shouldn't take AD so when I need something for anxiety I take Ativan. I find if I only take it on an as needed basis it works better for me. I use it sublingual because it acts faster. It's the only med I've been able to take other than my migraine med.

Thanks Julie, I know you're right. I've tried everything but I guess it's a personality clash. I know all men are not the same because I know some that actually participate in their marriage. What's funny, mine thinks he is perfect.

I don't imagine any of you have a problem controlling your anger at your DH but mine is the only person that can put me in a rage. We've been married a looong time & we've never been compatible. I've always worked, took care of our family & even my in-laws. He's the outdoor type & cares nothing about how a house looks. I struggle daily to keep the household chores done. I've had this illness for many years but I've never had any compassion from him. I try not to ever mention it unless I pass out & he happens to be there I might ask him to help me to the bed. Enough vent. Anyway, what I would like to know is, how can I keep my rage under control? The stress makes me sicker. I can't afford to live alone.

Thank you maggie. That is so sweet of you. That was a bright spot in my otherwise gloomy day. Merry Christmas & Happy New Year.

When I first started with Dysautonomia symptoms I could not control my anger. You would have to know me to see how bazarre that is. Most days now I have control & that is hard to do when you have a DH that thinks he shouldn't have to get involved in household chores even tho he is retired.

I take a small dose of Ativan (1/2 of .50 tab) before I go to the dentist but the last time I went I don't think I needed it. I have anesthetic without epinephrine. My tooth didn't get real numb until after the filling was finished but it wasn't painful. It was my fault because I told the dentist it was numb which I thought it was until he started drilling.

I had to give in & eat meat for a couple days until I felt stronger. I'm back on veggies again for last few days. I'm allergic to Quinoa but I ate barley today. I don't crave meat but I feel better to include a little in my diet. I don't think I can ever be completely meat free again as I have been in the past. Thanks.

Thanks for your reply. I don't have gerd. I think some of it is from anxiety & inner ear. It makes riding in a car a miserable experience.

Could you have iron added to your parenteral nutrition or take sublingual iron? My DIL has gastroparesis and is anemic & has been on iron supplements for a long time. Maybe try adding iron & see if you feel better.

I made it to my dental app't this am not to nervous because it was only for a checkup. The first thing I see is a sign on the door "excuse the rennovation". I must have the worst luck in the world. I freaked out because there's nothing that makes me any sicker than fresh paint, glue or building material. Since DH had been kind enough to take me I didn't want to upset him so I went in. I signed in & asked the receptionist if there was any fresh paint, she said not today but a few days ago. I didn't want to act like a big old baby so I tried to act normal. I was so dizzy I thought I would pass out & cold to the point of shaking. I managed to get my x rays & checkup & dentist said I needed a filling & could do it today if I wanted. I made up some excuse that I couldn't have it today. He said it needed to be done soon & they made me an app't for tomorrow. I asked if they would be painting tonight & the receptionist didn't know. I was so sick I came home & have been in my chair all day. Now I have to dread what I may get into tomorrow. I will probably call tomorrow & see if they have any toxic chemicals in the air but the trouble with that is, they don't notice it because it doesn't make them sick. I had taken 1/2 or an Ativan for nausea but it didn't help the cold & shaking. If I take the full .50 it makes me too sedated but I may have to give that a try. Anyone have any ideas how to cope with chemical sensitivity & Dysautonomia at the same time? Thanks & sorry for the rant but I needed it.

I've been dealing with this for over 35 years & I still panic probably more than I did when I was younger. Neurologist told me not to worry about it. I have learned as I've gotten older it is more dangerous now because if I had a fall at my age I might not recover. Heart failure is another concern. When I feel the pre syncope if I'm sitting I put my head down, if standing I try to get seated before fainting. I have had some bad falls & bumps on the head. I don't worry about dying I just want to stay conscious & not have anymore head injuries.

Thanks for your help. I will try to get up early but I probably won't make it. I can't salt load because it causes inner ear fluid & then I would be sick & dizzy. Hopefully I will make my app't.

Is there a secret to being able to get up & get to an early app't? I have a dental app't tomorrow at 10:00 (because that was the only thing available) & I don't know how I will ever make it. It's at least 25 miles from my house which seems like a long journey to me. It's nearly noon & I still am nauseous & lethargic. My DH thought I should have made it for 8:30 a m, he just doesn't get it. Maybe if I get up at 5:00 am I might be ready to go on time. thanks.

Thanks everybody for your help.

If so, how do you get your protein other than soy? I have allergies to black beans, chickpeas, & pintos. I can't eat dairy or eggs either. I seem to feel better if I eat beef a couple of times a week as it seems to stabilize my blood sugar better than veg. I'm trying to lower my chol & tri so thought I might try doing without meat for awhile & see how it works for me. With all my food allergies & sensitivities I've been having to eat things that don't cause a reaction regardless of whether they are healthy or not. Thanks for suggestions.

I'm glad you're ok. I tried to do the prep 3 different times but after about 6 hours into drinking the prep & not being able to eat solid food I started passing out. Dr told me not to come back until I got my hypoglycemia & POTS under control. I didn't find the drink bad at all. You can mix it with lemonade, ginger ale, sprite or any clear liquid which helps it taste better. I was allowed to drink 2 cans of Boost in an attempt to keep me conscious while fasting but it didn't help.

How did the colonoscopy go today? Are you ok?

Thanks everyone! Mornings are worse for me too. I hate it when I have to make an early appointment for dr or dentist.

Thanks lieze, this illness is horrible. I hope you're doing some better.

What about tomato juice, grape juice, OJ, or vegetable juice? Tea with lemon & sugar is easier for me to drink than plain water. This sounds impossible but plain water seems to give me heartburn. Altho Gatorade serves it's purpose it is vile tasting to me. Does the dr know why you're so thirsty?

Do any of you ever feel faint when you have upset stomach or need to use the bathroom? My vagus nerve will cause syncope when I have stomach cramps but I normally am ok if I am not in pain. This am I felt ok (no pain) but I felt like I could go down at any moment. After I had BM & rested a few min I felt ok, weak but ok . I've had Dysautonomia for approx 35 years & it goes from one weird symptom to another. Just when I think I might be getting better something else "attacks". thanks.