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sarcoidosis and dizzy spells

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Old 10-08-2012, 05:27 AM   #1
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paulhoj HB User
sarcoidosis and dizzy spells

Last December I started coming down with some dizzy spells and pain in my stomach area and after I went to the Dr. they diagnosed it as sarcoidosis. I went through a ton of blood tests a cat Scan, Pet Scan and even a biopsy on my lungs to see if it was cancer at first. Since then I have not really had an reoccurring symptoms until this weekend. Starting around Thursday night I started getting the dizzy spells again, They are not so bad that I feel like I am going to pass out but they have not gone away either. For about 5 days now I have had varying degrees of this dizziness. Anyone else have these types of issues if so was there anything that could be done? I am going to call my Dr. this morning to try and get an appointment but just trying to find out some more info since I am still not very knowledgably about this disease. Any help/advice would be appreciated.

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Old 10-25-2012, 11:24 AM   #2
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Re: sarcoidosis and dizzy spells

Hello, Paul (?).

I'm not a doctor, but I am a sarcoidosis patient. I'm one of about 3% of sarcoid cases in which the sarcoids grew in the heart. I, too, had dizzy spells, each one lasting about 10 - 15 seconds following standing up. My family doctor conducted an EKG test and found I had a blockage in my heart's electrical system. This interfered with my heartbeat, resulting in blood not flowing to my brain effectively, causing the dizziness. I was sent immediately to the ER, where numerous tests over the next few days identified my cardiac sarcoidosis. Two days later I had an implanted pacemaker. My heart deteriorated over time and I had a heart transplant 5 years after the initial discovery. I never had stomach pains so I can't offer any comment about that. However, I HIGHLY recommend you get an EKG. This test is totally noninvasive and only takes a few minutes.

Good luck,


Last edited by sarcoidray; 10-25-2012 at 11:28 AM.

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Old 03-19-2013, 04:04 PM   #3
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Re: sarcoidosis and dizzy spells

What tests did you have that pinpointed the cardiac sarcoidosis? You mentioned the ECG, but what were the other tests? I'm wondering if this may be what I have, although my ECG was ok. I have so many of the other symptoms though, and do have granulomas in my spleen and one calcified in my lung, as shown on a chest/abdomen CT scan. My odyssey started with shortness of breath, and now I have extreme lightheadedness and chest pain every day, even though cardiac cath was normal.

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Old 04-30-2013, 09:13 AM   #4
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Re: sarcoidosis and dizzy spells

I get really dizzy with the shortness of breath. When I'm getting up, walking, going up stairs or anything that causes the SOB then I'll get a dizzy spell.

My heart was throughly checked out so I know it hasn't effected my heart (yet.) So I tell you this so that you'll know that dizziness doesn't necessarily mean that your heart has been effected.

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Old 04-30-2013, 10:11 AM   #5
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Re: sarcoidosis and dizzy spells

Paul, lots of things can cause dizziness in sarcoidosis. It is helpful to observe when the dizziness occurs, like with position changes, exertion, movement, etc. It could be low oxygen levels if lungs are heavily involved, and that can be checked easily with a fingertip monitor at Dr's, office. An EKG or holter monitor would pick up irregular heartbeats. High or low BP could cause it. If no easy explanation is found, an MRI of brain should be done, but there is likely a simple explanation for it, and hopefully something that will help the dizziness.

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