And Now I Shake

ECG complex.

ECG complex. (Photo credit: Wikipedia)

For the last six weeks I’ve felt light-headed; I’ve often brought this up to my internist and she has always said that it’s my low blood pressure ( 80/60.) “Salt your food” she murmurs, “stand up slowly from a seated position.” Then she adds: “That happens to me too!!” (Now I’m SURE we can be best friends because we have so much in common.) My husband insists that it has been happening more often and he has nagged me to see my doctor for a few weeks now, I’ve refused.

Yesterday I had an annual physical with my gynecologist who I like but totally FORGOT that she’s a worry wart like I used to be. Notice the PAST tense. I casually asked her if she thought I needed to see my internist about this small issue. She said “yes” and “that it might be a problem with my heart “valve.” The only “v” word I expected to hear from her was “vagina”( if there are any guys reading now is your opportunity to run) valve did not make me happy. I finally confessed to my husband, tried not to look at his smug face and called to set up an appointment.

I described feeling light-headed, having to bend my head down to prevent fainting, feeling very warm, getting a massive headache but never passing out. I could reach a chair or a bed and sit down and I’d be fine in a few minutes. It never happened when driving and obviously if I felt weak, I wouldn’t go out. It did happen going up or down stairs but I always held on to the banister. It was NOT, in my estimation, dangerous.

Now that I had conceded, a nurse gave me an EKG which was perfect with the oddest exception. My whole body started shaking. Once or twice lately I have noticed that my body starts shaking uncontrollably and I can’t stop it. I have asked my husband if he could see it and he has always said “no.” I think it’s one of those “guy” things. The nurse noticed it right away, I’m sure a best friend could as well.

So now, I could add “shaking” to my long list of maladies. Along with Fibromyalgia, almost passing out, Thyroid disease, Auto-Immune disease of the thyroid,  impaired hearing, I shook. I felt like one of those bobble heads except it wasn’t just my head that bobbled, it was my body wobbling. A nurse took five or six vials of blood and then the doctor told me (wait for it…) I had to go to the cardiologist for an echocardiogram and even worse, a stress test. No, No, No! Ugh, this is sweat and embarrassment  in front of others and I hate that kind of stuff. I gave my husband the evil eye, actually two evil eyes. They scheduled me in six weeks, obviously not a crisis situation to them (Thanks, honey!)

My doctor used this new phrase at least five times during my seven minute visit: “due diligence. In my language that means ” I’m running these tests to cover my ass.” For someone who used to get anxious for days, even weeks, I only got anxious for about five minutes which for me is zen-like (and that’s when they  told me I had to see the darn cardiologist.)

As soon as we got home,  I made myself my old standard comfort food, an American cheese sandwich on soft bread with butter, some salt-ridden baked sour cream and onion Lays potato chips( for medicinal reasons only) and a cold Yoo-Hoo to drink. For dessert, nothing speaks comfort more than a dish of really rich vanilla ice cream, softly melting in a red ceramic dish. No drugs of any kind were necessary. No jelly on pizza, I required nothing else. Damn, I was proud. But, I still have to do those stupid tests unless, as my sister suggested, I cancel?! What do YOU think?

Woman in Café with Yoo-Hoo and Cigarette, afte...

Woman in Café with Yoo-Hoo and Cigarette, after William Glackens (Photo credit: Mike Licht, NotionsCapital.com)

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10 thoughts on “And Now I Shake

  1. Laurie, almost everyone I know with ME/CFS or FM has some form of OI – Orthostatic Intolerance. My particular brand is called Neurally Mediated Hypotension, and you are describing it to a T. There is also POTS (Posural Orthostatic Tachycardia Syndrome), which is very close to the same thing.

    In essence, the body doesn’t have a high enough volume of blood. So when you get up for laying down, you get dizzy and nearly black out (see stars or things go dark), because there’s not enough blood in your brain. It can also happen if you stand still too long, and the blood pools in your legs.

    Your heart has to work extra hard to get blood up to your brain, and sometimes you have brief tachycardia. Your resting BP can be very low – 80/50 is TOO low – and this leads to extra fatigue & sleepiness.

    The best test for this is called the Tilt table test, and please, REQUEST ONE. They may be smart enough to order it – if they deal with ME/CFS or FM patients, then they will. But if they aren’t used to us and our weird issues, they might miss it.

    I had my test done at Hopkins right after I got diagnosed, in ’99. They were doing research on it.

    There are both lifestyle (food & drink) changes that can help, and also meds that can make a HUGE difference, not just in those times you get dizzy when you stand up, but ALL THE TIME, because they treat the underlying problem, and with your BP in normal range, you will have more energy.

    Its not a bad thing, Laurie – finding out about it & getting it treated is a good thing, and it’s just part of the syndromes.
    *gentle hugs*

    Ash

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      • Yes, that’s the one – and it IS rather like a nightmare. You’re strapped to a table, monitors all over you, and told to be very very still while they measure what your BP & pulse does.

        With mine, they were actually trying to get me to pass out – very bizarre experience, with the cardiac PA acting like a cheerleader telling me to “stop fighting it & just let go…” while asking me to describe everything I was feeling. Apparently, we develop unconscious habits to counteract our rapidly falling BP. Since I failed to pass all the way out on the first “go,” they then gave me an injection of something in my iv, and when they tilted me again, I did, momentarily, and felt pretty damn awful.

        I’m not sure how typical my test was as Hopkins was doing a study on neuarally mediated hypotension (NMH) in FM patients, and the cardiac doctor there had just published a paper on it. At the time, it wasn’t a well known occurance like it is now.

        The cardiac PA was overjoyed for me – because now I could be treated, and they were seeing a lot of improvements in patients with treatment. And treatment made a huge difference for me, and I still take a small dose of the medication, plus added salt and dietary changes. Without it, my BP will get very low, in the 70/40 range with pulse of 45, and I just can barely stay awake.

        The test was not fun, but it’s necessary.
        *hugs*
        Ash

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      • Laurie, before you rule it out completely, please consider some things. I really don’t want to see you continue to be as sick & tired as you are – you know I know just how you feel. If there is something that could help you, I hope you will go to your Zen place and think about it.

        My test was done in 1999, and was something done as part of their study into FM. Things may have advanced since then and your experience may be different.

        In any case, the whole process takes only one to two hours. It’s not a long time. And there’s nothing acutely painful about it – just kinda weird and unpleasant.

        But if you pass the test – you get diagnosed with one of the dysautonomias that are SO common in FM & ME/CFS patients, such as POTS or NMH – treatment can make an enormous change in the quality of your everyday life.

        Imagine having twice as much energy as you have now. Imagine needing to sleep or nap much much less.

        Wouldn’t that be worth two hours of unpleasantness?

        I am speaking from rock solid experience here. I was barely able to get out of bed before getting the test & starting treatment. Then I was able to go back to WORKING for another 8 years!

        And I know now, even tho’ I can’t work now, what happens if I don’t take the medication often enough, and my BP gets too low. It makes a HUGE difference in my ability to just get out of bed, how much I sleep, and how much I feel like doing.

        I just want the best quality of life possible for you, sweetheart. I Love you, you know. It CAN get better!

        Please think about what I’ve said, and just take it one moment, one breath, at a time, okay?
        *gorilla hugs*
        ~Ash

        (Was gonna write “gentle hugs” then thought something bigger was needed, but already had the “g” and out popped “gorilla hugs” – makes me smile!)

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      • sweetheart, I would NEVER lie to you but don’t take what I write on my very worst days as my NORM. I will TRY and think about it but the fear of the test alone…makes me nauseous. I don’t nap during the day AT ALL anymore because of the new (fairly new) meds that I take. I wake up early and don’t have the aches pain constantly. I swear. I will bring it up to my Endocrinologist when I see her. But, I cannot lie, I think I had it once and it was torture. Love you. Sister Friend.

        Warm wishes, Laurie https://hibernationnow.wordpress.com

        >________________________________

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  2. I’m proud of you. Absolutely you should have had those tests. (besides salt my doctor said to keep really well hydrated – it adds volume to the blood and drives up the blood pressure to more normal ranges – who knew?)

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