Hope

cupcakemomma5,

I too have been symptomatic since I was a teen and had mono. Please let me know if you find things that really work well for you! I would really appreciate it!

Hope

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Not my whole face, but in spots it can be numb. I've had MRI's and CAT scans, I don't think I have a Chiari. I think for me it's just a circulation problem. I wake up with other parts of my body numb too. Of course it comes when my other symptoms are worse.

I've never seen my kids do this. I myself often push myself up into a sitting position at night as another way to get comfortable, but I only slouch to one side or another. I would think it would be hard to breath if one was fully bent over.

A monitor sounds like a great idea! Have you considered a helmet? Not kidding. A gal I know locally here has low blood pressure and last week she past out, hit her head on the wall and wound up with a concussion. Just an idea since you are passing out so often. I think I remember somebody else on here a while back mentioning that they started wearing one.

Well I'm really glad you were able to be observed and they are sending you to Toledo. You can't go on like this. I hope they can help you soon! Your onset was a virus right?

AshleyPooh,

I am on the waiting list for Dr. Grubb and I'm hoping he can clarify just what you are wondering because I don't understand it either. I've been told verbally POTS by most of the medical professionals I see, but my Neurologist whom I went to see for clarification says he "believes I have NCS with a possible POTS variant". He also treats me for my CFS and Meniere's. It's my cardiologist that wants me to see Grubb. If I ever get some better answers, I will post them =) Until then, I muddle through and most of my days sound like yours. I've been told it's not all about the bp and hr changes, that those may be just a side effect of something else going on so I can feel bad without drastic changes in those area's.

Do you know what brought on your condition? Was it gradual, life time, virus, vaccine, baby etc? Just curious. I always like to compare notes =)

I will try the egg white, thanks Rachel =)

I've never heard of a CBS mutation. I will look it up. Thanks Issie.

Yes, it used to come and go, but it has now taken up permanent residence! I can't remember the last time I woke up feeling like I actually slept! But I have been diagnosed with CFS, so it is expected.

I love eggs! I seem to do ok when they are added in to something that is baked (or maybe I'm kidding myself), but I've noticed time and time again that some hours or the next day after I've had a straight boiled egg, or scrambled egg etc. that my blood pressure is always about the lowest it goes. I've already removed gluten, most dairy, most corn, and white sugar from my diet. All for different reasons. I don't know how I'm going to remove eggs. I would like to remove them all together for a while just to see what happens, but I use them a lot in bread, coating meats, deep fry coating for veges, etc.

Anybody else have their blood pressure drop from eating eggs?

I like Ology products. I like the Pear shampoo & conditioner, and the Honey Oatmeal bar soap.

Congrats!

I lost 40 pounds in a year, which I could spare. But since I wasn't trying to lose it, it was a little scary. I got down to my minimum on my weight range and so far I have stopped losing. Now I am maintaining and even gained five pounds in the last couple months. I definitely have to work on muscle building.

Melanie,

Thank you so much for sharing your story! I'm sure it took a lot out of you just to share it with us. It's important for everybody to know how sick a person can get from this illness. Somebody should publish your story. I will be praying for you and your family.

Hope

I will check out your blog.

You may want to ask people on here what docs have helped them in the vicinity that you live. Just an idea. You don't want to start all over with somebody else that really doesn't know how to help.

Sometimes mine doesn't work on and off depending on hormone changes, barometric pressure, illness etc. Not consistently though. What did your doctor say?

Becia,

All that passing out has got to be hard on your body. I am not one to pass out too much. I'm more of the near syncope type. It's been my experience that it takes time (and a lot of patience with yourself) to start getting back on track. And my "track" is like a rollercoaster! One month, I'm doing good, then I'm not, then I improve again, then something knocks me back down, but I will take it over where I was at with it 2 years ago.

So my mornings depend on where I am on that roller coaster. Some mornings now, I get up and I am almost normal and I don't need meds. But most mornings my blood pressure is low. I have learned get up slow as you have. I point my toes back and forth to get the blood to move up to my body. I take things real slow and at my own pace. I have to eat often throughout the day. Most days include salty potato chips. People around me have figured out that I am no good to anybody unless I am moving at my own pace. After 2 years, nobody expects anything from me. I just do what I can do each day. A lot of days, that's sitting on the couch. But I am getting a lot more days that I can actually clean the house! I make dinner most nights. Mornings are almost always worse than evenings for me.

Keep looking for what works for you and your body. I hope you can stop passing out so frequently. I wish you well.

This is good encouragement for me. I keep putting off my yoga plan. I had another wisdom tooth removed yesterday, so today is NOT the day to start an exercise regimen. But I'm hoping by the end of the week. I have been doing more short walks, but I always feel better after a yoga session.

Thanks for the tip!

Agreeky,

I also had very painful ear infections as a child. Usually after being at the Lake. My ENT said that he thinks a gray area in the bone behind my ear is scarring from an old infection? Anyhow, my ENT sent me for an ENG, an MRI and to the Neurologist, he had me shut my eyes and try to walk a straight line (LOL! I can't even walk straight with my eyes open!) He had me tested for different "old viruses" that might be lurking and I had 4, which I guess is a theory of where Meniere's can start (and probably everything else that's wrong with me). I used to work with 2 other women (it was a large hospital, and they were in two different parts, so it's not really ironic) that had Vertigo problems and they were also told theirs was probably from the old viruses they carried. I wonder if you could go to a different ENT making sure ahead of time that they can look for Meniere's.

My mom has some friends that are nurses, which has been a blessing for me, when I have some kind of health problem they seem to point me in good directions. Otherwise, I'm not sure if I would have connected the spinning carnival ride in my head with an ear problem. But there are so many "triggers", it can be hard to manage even with a good diagnosis. But it is progressive so it's important to find out if that is your cause so you can work on it as best you can.

I wish you well!

That was very nice of him! Somebody else may have just thought about it and kept walking.

I know how you feel about thinking you may be getting better. Sometimes I feel so good I think "This is it! I'm normal again!", then POOF! I am soooooo not normal again!

Spinner, Do they give you a breathing treatment or just oxygen when you go the ER? Or something else? I have my own pulmo-aid, but that and the rescue inhaler will just make me more dizzy and doesn't seem to help me to breath. The meds I use for it is Xopenex, which I know isn't as effective as albuterol but Xopenex isn't suppose to increase your heart rate. I generally, eat a chewable vitamin C, drink hot tea, while putting a hot rice pack on my lungs alternating front and back. Sometimes I need to get a warm bath (not too warm). This usually gives me some relief, although I wonder if some day it's just not going to be enough. Curious what they would do for somebody who claims to be not getting enough breath if they are not wheezing.

Yes. But to my benefit, my blood pressure goes up to

I accidentally had a cup of regular tea last week instead of decafe. It wasn't good, My resting HR was 114, I was shaking and getting pricklies down my back, and I felt very panicky. I couldn't figure out what was wrong for about an hour and then I realized what I had done. I had been in a fog when I made the tea and grabbed my husbands regular tea bags instead of mine. Now I keep my decafe in a in a totally seperate area. It may or may not help the pooling, but my body can't take the caffine.