Swollen tongue/slurred speech and headaches

LindaE54
LindaE54 Member Posts: 2,054
edited December 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi all,

I decided to post to a larger audience for more input.

My tongue started swelling only on the right side some 2 weeks ago and began having a slurred speech. Constant headaches on right side as well for about one month. I was switched to Faslodex on 17 Feb. of this year. Last week's brain scan is clear but MO is ordering MRI as well. Dentist examined tongue, nothing other than swelling. I will also consult a Maxillofacial specialist next week. I tried Benadryl for a few days with no change. I was in Cuba for two weeks end of March, no issues to report on trip other than mild diarrhea upon return for a few days, no fever.

Any similar experience? Thoughts?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2017

    Linda,

    That's so scary and irritating! I'm happy the brain scan is clear, cause I'll bet your dark thoughts went straight there.

    I'm awash with questions: Do you still have tonsils, and do they get inflamed with seasonal allergies? Did they run a white count to se if there was an infectious process happening? Do you have difficulty swallowing? Are any other muscle sets in your body acting funny?

    I see that you've had radiation - was it anywhere near this area? Are your vocal chords affected at all? Have you been clearing your throat a bunch?

    There's a wild chance this could be a neuropathy. An allergy would have been the easy answer, but you report that Benadryl didn't touch it. Look up "idiopathic angioedema" and see if anything rings a bell for you. Idiopathic is just doctor speak for "we have no idea why this is happening".

    My mind goes to nerve damage, because I've had two friends with motor neuron disease who had some presentations like this, but you don't seem to have had nerve damaging chemo. Do you have any bone lesions in your cervical spine area?

    Sorry for all the questions. In our family, you would be the topic of a lively dinner discussion. Too many doctors hanging around.

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  • pajim
    pajim Member Posts: 2,785
    edited April 2017

    Linda, my mind goes to a different place than blainejennifer. I wonder if this has nothing to do with cancer. You said you went to Cuba, and had diarrhea on your return. I wonder if you picked up a bug? One that is affecting your nervous system?

    Have they run an bacterial/viral screen? Tried antibiotics or anti-fungal medication?

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Hey BlaineJ - thanks for your reply. Interesting case huh? Here it goes:

    Tonsils are in and no seasonal allergies, white counts are fine, some difficulty swallowing when eating, no other muscles playing free games. No rads in that area, vocal chords OK and no throat clearing. Never had chemo and yes mets to almost all cervical area. I had a bone scan this week, but no results yet, however CT scan of brain, neck and chest last week show no change to mets in cervical area. Yep, looked up idiopathic edema, doesn't help. Other than the switch from Femara to Fas, no other change in meds or supplement, no change in products I use nor in food. I spoke with AstraZeneca pharma co today and they have no reports of tongue issues with Fas.

    Even more mysterious right?!

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2017

    Is the swelling tender or just present? Do you wear any sort of dental appliance, or a night guard for teeth grinding? Someone here is pulling for a mechanical reason :)

    And, just for fun, ask someone to give you a quickie symmetry muscle test - feel the hand grip on right and left hand and see if there is any difference.

    Yeah, we are talking about you. Hope you don't mind.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Swelling is just present. No dental appliance, no teeth gritting and no hearing aid yet! Nobody around for hand grip but that seems ok. No facial asymmetry either. Go ahead and talk all you want!

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2017

    Any meds for high blood pressure?

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Nope

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  • bevin
    bevin Member Posts: 1,902
    edited April 2017

    I am sorry to barge in here but thought my input may be helpful. This happened to me 6 years ago. swollen tongue, one side only, headache was horrific. would not go away, horrible pain along the side of my head above my ear. I had a Brain and Neck MRI as they were concerned of stroke. They found I had Bells Palsy. The 7th nerve was swollen and compressed effecting facial muscles, speech and tongue. I got it after travelling to the JerseyChanne Islands. They don't know what causes Bells Palsy but my tx was prednisone for 3 months and a strong antiviral. Valciclvar 1Kmg a day.  Could you ask your Neuro about that possibility.  My facial muscles we permanently droopy after the Bells Palsy but speech and pain went normal after about 4 days on tx. But if I came off the prednisone would return. Took about 3 months tx. 

    Good luck. I hope it was okay that I chimed in.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Thanks so much Bevin. I'm waiting for an MRI this time instead of a brain scan and maybe this test will be more specific and show the cause. I can't wait to find a solution to this!

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  • cive
    cive Member Posts: 709
    edited April 2017

    I'm with pajim, maybe you picked up some unusual virus or microbe in Cuba.  I assume the speech slurring is due to the swollen tongue?

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Pajm - somehow I missed your post. No specific testing was done for bacterial/viral infection but I sure will bring it up. MO is aware I was in Cuba but didn't put any emphasis on it.

    Cive, yes, at least so far. Maybe brain MRI will be more specific than CT scan.


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    Regarding your recent travel, perhaps they should consider parasites as well. Parasites can go some weird places and cause some weird symptoms. I would go beyond a cancer center to a university-affiliated teaching hospital in search of an answer.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2017

    Hi there buddy - Bells Palsy sounds interesting - it attacks when immune system is under stress - knew someone who had it years ago in Montreal - think you should see your PCP - not sure onc is the way to go on this. The Cuba trip could be a possibility but it seems half the country goes every year and I rarely hear of anyone getting sick but it's worth having someone run complete bloodwork just in case. Keeping you in my thoughts, S.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited April 2017

    Hi Sandy, thanks for chiming in. I never heard of anybody who had problems in Cuba either except for the big D once in a while. Hopefully, the maxillofacial specialist I see Tuesday will have answers or else I will see a GP. Hugs to you!

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  • hypohavoc
    hypohavoc Member Posts: 1
    edited December 2017


    Hi there,


    I see that this is a few months old, but just in case you haven't resolved this yet, a swollen tongue, slurred speech and headaches are some of the symptoms of hypothyroidism, Hashimoto's to be more specific. It's a shame that something so widespread as hypothyroid (like 80% of U.S. population), isn't diagnosed properly, causing much needless suffering. Please research and get the necessary tests done (not just TSH, but T3, T4, antibodies, etc.).


    Good luck to you!



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  • bevin
    bevin Member Posts: 1,902
    edited December 2017

    also bells palsey. Which is inflamation of 7th nerve. Gives stroke like symptoms to tomgue, speech and facial muscles.isually resolves w steroids amd time. Pain is awful from the nerve irritation

    Headacjr was the worse symptom

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2017

    Thank you for taking the time to give me feedback. It turns out C1 met put pressure on the hypoglossal never causing permanent damage. I had rads to prevent further neurological damage.

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