songcanary

Thank you for the well wishes. It really means a lot. And I realize I'm not the only one who has given up a career. Hey, I don't even like roller coasters at the park, why would I like one in real life?? Hugs to all

Lieze, I think you are exactly right; not enough recovery time. I quit work for one whole year and then I felt almost normal; went back to work. Now six months later I have a relapse. So it takes time, apparently more than even I thought. If you could hire some help maybe it would alleviate some stress for you. And also, a complete stranger is not going to have a history with you. It could be very refreshing and a good thing for a lot of reasons.

I really feel that any doctor, who doesn't think you are sick even after a positive tilt test, is an idiot. Remember, SOMEONE has to graduate at the bottom of the class. I waited three long years to get proof of a real live illness, and no one is going to deprive me of it. The very first cardiologist I saw said to me 'Well, with symptoms like that, no wonder you feel terrible'. It was such a relief I cried. This is not in our heads, don't let yourself slide down the slippery slope of insanity. From what I read, no one on this board wants to be unproductive and on multiple meds. A bit of a rant but I had to quit my beloved job last weekend so it's a sensitive subject right now

Polite indeed, on both counts! My problem is that I don't want to waste Dr. Grubb's time because so many other people have worse symptoms than I do. I had a really rough weekend with a bit of a relapse and I do want to discuss it with someone, but I don't know who exactly. Or if I should be seeing a neurologist instead? I'm so confused...

Dana, I'm so glad you said that. I wonder if I might want my primary to give me a referral to Dr. Grubb. I don't think we should have to ask for our own tests; I mean, aren't they supposed to know this stuff??? Anyway, it's good to have these opinions because I left feeling like maybe something was missing. I do not enjoy having to diagnose myself.

Apparently I won the lotto, I have 'em both. Actually, my rheumatologist told me that fibro is a type of dysautonomia. It makes sense, I did lots of research after he told me that.

I just wanted to mention that it happens in the veterinary world as well. An internist I used to work with said that dysautonomia is so hard to diagnose. But it commonly presents with dilated pupils, particularly in cats. Imagine having dys and not even being able to TELL someone how you feel. Not like it matters with most doctors lol

Ha ha, if my body were out of whack just because of nutrition/diet, I'd have been better long ago. We have symptoms that indicate more than just that. What tests are you wanting for the adrenals? I want the same. My cortisol is always high, probably from stress, but who knows. BTW, cortisol is catabolic to muscle and I wonder if that's why you can't gain weight. It happened to me before I got diagnosed, now I feel it happening again. Ugh. I don't know why some doctors cringe when we ask about adrenals. They are soooo important to well being.

You know, that does make sense. I actually took a Claritin the other day when I first saw the hives because I wanted to avoid bloodshot eyes if possible. I don't really know if it made a difference or not that time, but I'll try it again because I'm still feeling lousy five hours later. Thanks as always

Dr. Fouad, an EP, diagnosed me there last year. She is good, but really busy and I just have so many unanswered questions. I made an appt with her for this September. During my TTT, I didn't have any blood drawn and I've noticed that other posters have had catecholamines etc. done during the tilt, and I didn't have any of that. Maybe it wasn't warranted, I don't know. But over all, I felt I was in good hands.

I had been feeling so well for the last year that I had resumed working part time. Today was feeling great until 4 pm when I had a sudden onset of overwhelming nausea, weakness, felt warm but no fever, shaky, several BMs within 30 minutes. It was so bad I had to ask another pet sitter to take over for me. That is just not OK. Then I noticed a little while ago that I have many hives on my forehead. I have had these before in small amounts, but not for months. I do take food drops for 11 of my allergens, including wheat. However, I had more wheat bread today than normal, 4 slices instead of 2. For the last few days have had some light nausea and was trying to get my weight back up. I am wondering if this reaction could be food intolerance? I feel like such a dummy asking this because I would probably tell someone else OF COURSE. But this reaction was so bad that I had to cancel clients and it really scares me. The worst was over within two hours but now I just feel washed out and not 100%. Stomach still feels awful. What on earth just happened???

I just talked with my hygienist about this the other day. She said speak up, because this problem is not uncommon and there are MANY alternatives. It doesn't have to be a big deal.

I have been on Armour thyroid for one year now. My cholesterol was high then, and had been creeping up for a few years. It will be interesting to see if it has gone down any. I was dumbfounded when I read the connection between hypothyroidism and cholesterol. I am happy you are feeling better!

I hear that. And what is up with feeling so rotten with a perfectly normal BP? It happens to me routinely, today actually. Hopefully this episode will pass for you. I feel like I've spent half my life just waiting to have the occasional good day You bathed and dressed your kids? That's strength right there. Don't know if I could manage that. Take care.

That is a great idea. Such creative thinkers here...

I have been there and done that. Sue, you could not have said this better. And now for the dumb question of the day. What does DH stand for???

Standfirm, Thank you so much for mentioning the cold washcloths. I had forgotten all about that! DUH. Should have used some the other day when it was 93 in the shade. My old Jazzercise instructor used to bring those to class when it was really hot. They were heavenly.

Lieze, I know what you mean. I had so many pre-syncopal episodes before I got diagnosed that I just can't shake that fear of having them again. And I do get them, just not as bad as before. When I drive, I stay pretty close to home and do little bits as I can. Gradually I think the brain develops the 'happy memory' and decreases the 'bad memory' with each positive experience. I think it is perfectly normal to have anxiety with this illness. Sometimes we don't know what is safe to do until we try. Baby steps, you know? Also, I have learned to only eat very small portions of foods that I don't know for sure are safe. That way I can catch a reation while it is still mild. What an education

I take 5 mg generic Ambien. My doctor told me the reason people carry on while sleeping is because you need to take the med and go right to bed, not wait. So far I just love this drug. I have terrible insomnia as well. I initially tried 10 mg, but I had daytime drowsiness. The 5 mg is just right with no daytime problems.

I wonder if that is what is happening to me, with the sudden temp change. Last year right after I was diagnosed, I actually felt better and it was summer. But we recently had a hot spell and it was muggy to boot. And I've been feeling terrible. Maybe it's just the sudden change and I'll adjust. Thanks for mentioning that; now I am hopeful. I am always so afraid of relapsing.

I suspect that my symptoms are from lack of brain perfusion as well. What drugs does he want to try? I just made an appt with my EP and it is three months away. I am having more trouble with lightheadedness and want to find out why this is getting worse. I am fascinated by this test you had; wish they did that one at Cleveland Clinic.

It happens to me all the time. That is why I am scared to do anything away from home, because I never know when it will hit. I hate it!

TELL me about it. I was miserable for the last few days, but when the heat wave/humidity lifted, so did my symptoms. Crazy stuff. I checked my BP the whole time and it was its usual low self, but no worse. Maybe like they say, 'it's not the heat, it's the humidity!?'

Hi Enko, A new one for me as well. I think Naomi gave you good advice and I can't get much out of google either. But this doctor is a neuro after all, and maybe this wording is what she knows. I mean, maybe they use fancy language for something more simple to another doctor. I don't know On the other hand, if you do have symptoms that are stress-related, it would be no surprise to me because I have that and I am really working hard to reduce my REACTION to stress. It helps a lot, but it isn't easy by any means. I had to wait two months for a TTT so I know what you mean about the wait. At least she doesn't think it is anything life threatening or you would already be done with it! Hang in there

Hi Shoegal, I have the same problem. BP can be 100/70 or 89/60 and there is no correlation with symptoms, I can't make sense of it. I am wondering if it's Midodrine time for me too. But like you say, is it the BP that is making us feel sick or something else? It seems like such a simple question to me and yet, no real answer.