The 12th Invest in ME Research Conference June, 2017, Part 2
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Question re: pain/swelling on left side of face

Discussion in 'Neurological/Neuro-sensory' started by Gingergrrl, Mar 30, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I woke up this morning with slight angiodema/swelling on left side of my face. My face was reddish and hot to the touch but the weird thing is that it was very painful. The pain felt deep, like down to the bones in my face, but was also on the surface of my skin. If I just barely touch my face, it is very painful.

    It is strictly on the left side and goes from my cheek to under my eye to my temple to above my eye and includes my scalp. I thought it might be mast cell related so I finally took my rescue med, Atarax. This eliminated all swelling, redness, and hot feeling but did not touch the pain.

    The roof of my mouth and upper gums are also swollen along with my left tonsil and side of throat but this is very common for me with MCAS. The facial pain is completely new and worrisome.

    Does this sound MCAS related or like nerve pain or something different? I have heard of shingles without the rash (zoster sin herpete) and I have been IgM+ for VZV for several years but don't know if this could match? Do you take Famvir or an anti-viral for nerve pain or am I way off?

    I did not eat dinner tonight b/c just too risky in case this is MCAS related, I do not want to trigger an anaphylactic reaction from the food.

    I put this in the neurological forum b/c it really feels like nerve pain, although I am not positive if I know what nerve pain feels like. I put ice on it for hours but it did not help at all and I cannot even have that side of my face touch the pillow, it is too painful.

    Am hoping it's one of those weird things that just goes away. If anyone has any thoughts, that would be great!
     
  2. Kati

    Kati Patient in training

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    Hi @Gingergrrl it would be best that you see a physician and get this new symptom examined especially when you talk about swelling and excruciating pain.

    What came to my mind was 2 things, but it could be more than that.
    - shingles
    - trigeminal neuralgia https://en.m.wikipedia.org/wiki/Trigeminal_neuralgia

    please see a dr!
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Kati and the swelling part was relatively minor and disappeared after I took the Atarax which makes me question if it is MCAS related.

    The pain is the part that concerns me b/c I have not had it before. If it is shingles, it is completely without any rash and is zoster sin herpete. I will read your link on trigeminal neuralgia and am not familiar with it.

    I am seeing a new PCP on Mon (less than a week) and will mention it to him and am hoping he can help me to coordinate other treatments that I need.

    ETA: I read the link and there are parts of it that definitely match but other parts that don't. So am not quite sure if it is trigeminal neuralgia or not?
     
    Kati likes this.
  4. lansbergen

    lansbergen Senior Member

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  5. Deltrus

    Deltrus Senior Member

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    I have a few jaw problems due to nerves messing up and making the muscles dysfunctional.

    There are two joints in your body mostly held together by muscle, your jaw and your shoulder. Manipulating these joints does nothing, stretching and freeing up entrapped tissues is where it is at.

    I really warn you, be careful about "manipulating" your jaw, it is a one way road. Your brain tends to forget jaw muscle memory really easily and you get tmj.

    Two fairly benign ways to help put your jaw into alignment with little mechanical stress, are these:

    1. Gently pull down the fleshy area where your chin meets your neck (on both sides). Maybe open your jaw a bit up and down or side to side, not too much tho.

    2. Another way is to suck your cheek into your mouth and sort of move your lower jaw side to side a bit.

    These help free up any trapped nerves/muscle/tendons.

    Try not to follow what your brain wants to do, and just move your jaw around wantonly until things push into place, it doesn't work like other joints. That just messes up the sensitive tissues in that area.

    Nerve pain for me usually feels like it is deep in the bone, but if you push on the area then generally you can feel it localizing to a very small nerve path.

    Edit: and if you do any stretches, focus on relaxing and searching for tension rather than actual "stretching".
     
    Last edited: Mar 30, 2016
  6. Skippa

    Skippa Anti-BS

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    Facial or parotid lymph nodes?
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    It is dry.

    And @Deltrus am not actually having any jaw pain. It starts much higher up at upper cheek below my eye and stretches around to temple, above eye and scalp. Sorry if I did not explain it well!
    Skippa, I have no idea? Where are those located on the face? Would it feel like what I described? Most severe pain right now is if I try to touch my right eye lid, temple, or above the eye but only on right side of face.
     
  8. Skippa

    Skippa Anti-BS

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    What you describe is exactly like what I get under my armpit when those lymph nodes flare up, except of course on your face.

    That or spider bite, but surely you'd have an epicenter that looks like a little bite mark.

    Google images for "facial lymph nodes".

    Eta: what you just said to @Deltrus sounds like a blocked/inflamed tear duct perhaps too, but that's a layman's longshot.
     
    Last edited: Mar 30, 2016
  9. lansbergen

    lansbergen Senior Member

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    I like to know pain becomes less when it starts running and if sneezing makes it better. Please watch for those sighns and let me know.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    Skippa, it actually feels like the pain if you had a spider bite get infected except there is absolutely no bite visible and covers a wide area from my cheek to my eye to my scalp. It's keeping me awake right now and really bothering me.

    I googled pics of facial lymph nodes but am truly too clueless to know what I am looking at!

    Also googled blocked tear duct but it doesn't seem to match. The weird thing though is that last week I was certain that I had an eye infection in both eyes (it was on a Sunday) and I planned to call my eye doc the next day but when I woke up on Mon, it was completely 100% gone and never returned.

    I get so many weird allergic reactions from MCAS, that nothing surprises me anymore but never had pain like this before. It's not so much the intensity of the pain as the weirdness of how it feels.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    Will let you know but I get frequent eyes, nose and throat runny and itchy from MCAS (not so much sneezing though.) my allergy meds usually control it but I think the recent weather changes are affecting it again and this is why the roof of my mouth and upper gums are swollen.

    Can you get nerve pain from MCAS? I need to google this.
     
  12. daisybell

    daisybell Senior Member

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    My initial thought was like @Kati - I hope it's not shingles....
    Fingers crossed!
     
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  13. lansbergen

    lansbergen Senior Member

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    I do not know but I guess when the membranes swell the sensors will sense something is wrong and send a signal to the brain.

    I had a lot of nerve pain. It slowly got better but it took a long time.

    There are many cranial nerves and they run so close together it is hard to tell which ones are affected. All execpt two go to the brainstem.
     
    Last edited: Mar 30, 2016
  14. lansbergen

    lansbergen Senior Member

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    For me that are good sighns. Dry is bad, running is good. Itching is a good sighn too for me but sometimes it drives me crazy.

    It is impossible to tell when the response is acceptable and when it becomes to dangerous. I choose not to interfere other then taking the immune moderator.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    If it is, it is shingles without any outward signs like a rash and it is only on one side of my face. How would I know for sure? My VZV titer has been IgM+ for years so it would not reveal any new info. I still have Famvir although it is probably expired at this point.

    This is what I wondered b/c it started with angiodema, flushing and face hot which are usually signs of MCAS for me. It's only the pain that is new. I literally cannot even touch the upper part of my face or put that side of face on pillow which is why I am still awake at 3 AM typing here!

    Just curious, why is dry bad and running good? I take a lot of antihistamines (although low doses) for MCAS so that can dry it out but otherwise it would be itchy and running.
     
  16. lansbergen

    lansbergen Senior Member

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    In animal medicine one is teached to be alert for dry mucosa when one thinks an animal has an infection. It is part of the clinical examination.

    Mucosa is first line defence and must be moist.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    Am worried about it being shingles without the rash so I just took one Famvir since the pain is centered around my left eye. I got worried about it affecting my vision. The Famvir is prescribed to me and has no food dyes so I don't think I will be allergic to it. I just sent an e-mail to the prescribing doctor to update him of the situation. It might not be shingles but just want to be safe.

    Thanks to everyone for your concern, I really appreciate it.
     
    daisybell likes this.
  18. taniaaust1

    taniaaust1

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    If what you take for MCAS worked on it, I'd personally put it down on that. Maybe it was more painful then normal due to more swelling in certain areas (even if you couldnt see them). Logic tells me that swelling could put pressure onto nerves so I guess pain would depend on amount of swelling and where it was exactly.

    Have you ever seen the mastocytosis photos with the poor girl with half her face swollen?
     
  19. Tammy

    Tammy Senior Member

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    Definitely sounds like shingles to me. Many people don't realize that shingles doesn't necessarily have to show up with rash. Shingles can also cause gum pain, jaw pain.............and trigeminal nerve pain. I've had shingles on the right side of my head..............it caused all the symptoms I mentioned. It was scary when my eye got puffy as well.
     
    Gingergrrl likes this.
  20. Deltrus

    Deltrus Senior Member

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    No problem, sorry I couldn't be of more help. Good luck.
     
    Gingergrrl likes this.

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