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Old 09-02-2008, 02:59 PM   #1
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Frustrated

Hi, Just need to sound off. I had a horrible week end. Very dizzy and alot of muscle spasms. I was so uncomfortable sleeping was an issue. I went to the dr this am. I was there for 3 hrs hooked up to IV,s. He thought all my issues were hightened because of being dehydrated. (blood work confirmed this was the case.) After being home for 2 hours, I still feel awful. He said he thinks when I get anything wrong with me, it just really sets off my symptoms from the MAV. I can barely walk and if I'm up for more then a few minutes I feel like I am going to pass out! I am just so tired of this!!!! I'm angry, frustrated and sad. Could this be just another freaky MAV thing. I just worry so much about the tingling and the spasms. I also have tingling on my neck which is new. Ok, enough. Thanks for listening.

CK

 
Old 09-02-2008, 03:42 PM   #2
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Smile Re: Frustrated

Venting is good for you. Try journaling - it's a great way to vent in the moment, and it allows you to pour out your feelings so you don't bottle them up.

I also deal with twitches, tingles, and moving skin sensations.

I am a "light liquid drinker" myself, and can dehydrate easily. For me, being dehydrated can add to my head symptoms, but it does not cause them.

Try drinking something you really enjoy that is light on the sugar. Maybe Gatorade or flavored water/mineral water, or kool-aid without all the sugar added to it. Eating fruit cups is also a good way to keep hydrated.

Make it a point to drink at least one full glass of something every 1 - 2 hours, after a hot shower (if you take them really hot), with meals, and after any type of exercise.

Get your blood pressure and iron levels checked. Low blood pressure can make you feel weak and woozy, and if you have low blood pressure, you may feel worse after eating (digestion lowers bp) and exposing yourself to heat (electric blankets, hot showers/baths, exercise). I have healthy low bp, and sometimes I feel the effects of having a normal low bp.

I was diagnosed with anemia last year. Low iron can be the result of something simple like heavy menstrual periods. I felt very weak, light-headed, woozier than usual, short of breath, very tired, everything was an effort. I take one iron pill each morning now, and feel better for it.

Have you thought about getting some counseling? Counseling helped me immensely when I felt that I just wasn't coping as well as I should be. I was able to get some grounding and react differently to my situation which made it easier on me emotionally to deal with what I had to.

I also needed super-reassurance that I am healthy despite the symptoms and sensations. That made a real difference for me because it alleviated some of the worrying that something was really horribly wrong with me. Talk to your doctor about how worried you are - if you can alleviate one worry, it makes a difference.

Take good care. xo

 
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Old 09-02-2008, 04:12 PM   #3
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Re: Frustrated

CK--

I'm so sorry you are feeling badly! I've also been feeling rather yucky in general. My husband thinks dehydration is a huge issue for me. I rarely drink water at all...I know I should, but I usually don't like it. I have been dehydrated several times to the point of needing iv fluids, and it does make you very dizzy...I guess from the very low bp, which I have anyway. It can take a couple of days to feel normal again after being dehydrated...so keep that in mind and keep drinking liquids.

Were you thinking of seeing Dr. Hain? I seem to remember that. Maybe that would be a good next step. I've thought of flying to see him (I'm in the Southeast now--far away), just b/c he has seen it all and seemingly written the textbooks on this stuff--I would love love love to have his input on my condition. Just a thought, as taking some kind of action often can make one feel better.

It's so hard...I completely relate! Keep your chin up...things have got to get better!

Violet

 
Old 09-02-2008, 05:26 PM   #4
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Re: Frustrated

CK,

I'm reading "Who Gets Sick". It's interesting and I have really been applying the ideas I've gotten from the book. It's made me feel better.

Counseling is a great idea and I am currently undergoing that as well. I think I too need a lot of reassurance from everyone all the time that I am not really ill. The weakness has been bothering me more lately than the dizziness. It's just weird.

I've been challenging my catastrophic thoughts. If I think to myself, "What if I have Meniere's?!?!?" and my heart rate starts up and my stomach knots up... then I think "What if I don't?" That calms things down a little.

My legs and feet are super weak tonight and I actually have leg cramps. Who knows what the heck it is. I just decided to try and take each day as it comes and as long as I have function in both legs I am going to do as much as I can, for my son's sake, as well as mine.

Yesterday my head was so tense and funny feeling and my legs were weak and my ears were ringing and I was so nervous. I closed my eyes and thought to myself "What if this is adrenaline doing this? Can I accept that this might just be adrenaline?" The funny feeling in my head went away and turned more into a dull ache (which was preferable over feeling like I was going to have a stroke or my head was going to pull apart) and the weakness in my feet went away. That tells me that some of this is anxiety. Not all, but some.

Keep your chin up. Think positively, trust in the path that you're on, and keep posting!

L4A

 
Old 09-02-2008, 05:53 PM   #5
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Re: Frustrated

L4A--

could your med be making your legs feel weak? have you had your bp, etc., checked? just a thought...??

--Violet

 
Old 09-02-2008, 07:24 PM   #6
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Re: Frustrated

Violet,

The leg thing started before the med. My bp is fine--checked it tonight! THanks for the ideas--keep sending them!

L4A

 
Old 09-02-2008, 08:51 PM   #7
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violet6 HB Userviolet6 HB User
Re: Frustrated

Ah! I figured you would be on top of those things...hmmm, well I hope those feelings pass very soon. It's enough just to have the dizzies!



Violet

 
Old 09-03-2008, 07:04 AM   #8
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cknmbbl HB User
Re: Frustrated

Thanks for the support. It's bad enough just to feel off balance and weak everyday, but you add one little thing and it about pushes me to drop my basket. I really try to stay up on my liquids. I'm going to have to try harder and do things like the fruit cups. Everything takes so much effort. Like getting the water to drink in the first place.
I have thought about the counseling thing. When this first happened that was one of the first things I did. Maybe I need a refresher.
I can't wait to get the book L4A. Last night I challenged some of my thinking. I kept thinking "this has to be something else, not just MAV", then I thought "what if it is just MAV, then there is a great chance I will recover at some point." I bet it's like retraining your brain.
I hope everyone has a great day.

CK

 
Old 09-03-2008, 08:24 AM   #9
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lookng4answrs HB User
Re: Frustrated

CK,

That's exactly what it is--retraining your brain. Stopping the endless record player of negative and scary thoughts going around and around in your mind. Starting to believe that you can control a lot of how you feel, or at least how you perceive and deal with how you feel. I think you'll like the book. If we can be negative and scared all the time about our conditions why not be positive and hopeful? Trust me, this is the hardest thing for me--I have always been negative, skeptical, cynical... fun person to be around, huh? I'm not saying I've got it all figured out, and there are definitely times when I fall deep into the depression factor but I'm trying and it's helping.

Hang in there. You're thought of often!

L4A

 
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