Major need to vent

[essdipity]

I had a bad bout off trigeminal neuralgia in late June/July and IV SoluMedrol really helped. Almost 2 weeks ago same thing. This time my neuro ordered 5 days of 1000mg Prednisone (which floored the pharmacist), I think going the oral route because I was in excruciating pain and pills were easier to set up than infusions. The 5 days ended this past Sunday. I had some breakthrough pain then but not a lot. Monday going from a bit worse to a lot worse. Tuesday I got an emergency appt with my dentist for x-rays, which I'd had a few months ago, just to cover the1% chance that I had a dental problem. I didn't.

By Weds it was awful. Despite lots of bureaucracy my neuro ordered more Prednisone, 3 days at 500mg this time, and Dilantin for the pain. I can't take Tegretol because it wipes out my blood platelets, also causes me to lose my balance totally. Anyway, I had also developed a large swelling on my jawbone that kept getting worse. The pain there and in my ear, upper and lower gums, some molars and along the bottom of my cheekbone was indescribable. Finally I could stand it no longer and went to an ER. There they gave me an IV drip of Dilaudid, antibiotic and Solumedrol, a great relief. The doctor, who makes Doogie Howser look like a grandfather, was not confidence-inspiring to say the least. He did numb the inside of my jaw with lidocaine, then lanced it, getting just a bit of infection out.

I went home with scripts for hydrocodone and an antibiotic, which because of the lateness I couldn't have filled till this morning. Meanwhile the egg-sized swelling on my jaw kept getting bigger. After getting the scripts filled this morning, though I didn't have an appt, I went straight to my primary doc's office. Luckily he happened to come out into the waiting area, and saw my face was/is a mess from the swelling. He was fully booked, but I was able to see his nurse practitioner, who was wonderful. She ordered an urgent CT scan, and booked an ENT appt, also said that the meds I'd been ordered, including the Prednisone, were appropriate. I asked why someone would be given both an antibiotic and a steroid, as given their properties that seemed counter-intuitive. She said I was right, yet they were worried that without the antibiotic the swelling could spread to the danger point, affecting my windpipe.

(Deep breath here.) So I had the CT scan this afternoon, and will see the ENT at lunchtime tomorrow. He will have the scan results by then. They will be looking in particular for a stone in a salivary gland, which could cause the swelling, but another cause could be infection allowed by the Prednisone. Steroids can do a number on the immune system, allowing in infections that wouldn't make it otherwise. My primary doc is sure I also have undiagnosed Sjogrens Syndrome, despite my having spent lots of 2014 having testing that say I don't meet the criteria. I certainly have the symptoms, which have been attributed to autonomic dysfunction from MS.

So ARRRGH! I'm incredibly tired of this, and of being in so much pain. Stop the world, I want to get off.

ess

[cjtmn]

That is awful!!! How frustrating :( Fingers crossed the TN pain stays away and your docs can figure out how to address the infection.

Cheryl

[essdipity]

More thank yous to all. The last day of the oral Prednisone was yesterday, Saturday. Once again, it had already seemed to stop working, as I felt pressure building up in my ear, nose and some teeth, plus of course the jawbone.

I got a call from the ER Saturday morning, telling me they'd done a culture and found bacteria in my blood. Had to go back, basically for 2 1/2 hours of nothing. They couldn't replicate the bacteria and are thinking it was from a contaminated container, but are doing a more thorough test now. Also, my white blood count was very high. That usually indicates infection, but the 'roids can mess up blood work too.

All I know is that I still have the egg swelling, and that it's gone all bruised, making me look like someone socked me. That's from the lancing they did on the inside of my mouth on Weds, which I guess bled quite a bit.

This all has to be connected to the TN, but no one knows how, and no doctor particularly cares, as long as his end of things is okay. Meanwhile I'm having moderate pain, and am taking Dilantin, Clyndamycin and Oxycodone, plus all my usual stuff. Feeling weirded out, and worried that the awful TN pain will come back.

ess

[suspiciouscombo]

Wowza Ess............ Mirroring the comments above, please know you have support here. Certainly I can relate to areas of your case as my symptoms present as an absolute zinger much of the time!

Glad you reached out and again, you have support here past and present.
Ox

[supermum_ms]

Ouch ess,

You sure have been through the wringer this year! [gentle hugs]

I've had one side of my jaw swell up from infection and setting off the TN, once after an extraction 5mths before and the other a tooth needed a root canal, also weirdly had the roof of my mouth swell up egg sized with infection, though no teeth there so no idea the why of that one.....jaws do hurt like nothing else!

I 'kind of' have an idea of how much you've been hurting, so i'll be keeping my fingers crossed that what ever is causing this, blQQdy stops and they work it out quick smart!

HUGS..........JJ      

[Joiedecour]

Ess, no wisdom to offer, but plenty of warm thoughts for a speedy end to this nightmare.

[Andipw3]

I'm curious... When the doc was "cleaning out the infection,"  where was he cleaning?

[kwarendorf]

Ess - I'm sorry you're going through this :-(

Kyle

[essdipity]

Thank you so much, those who've given me support. I really need it.

Saw the ENT today. There is no mass in my face, though I didn't think there was, as a mass doesn't form in less than a week. Neither he nor the radiologist know what's causing the swelling. Could be an infection, but if it is I'm already on an antiobiotic, and the right one, apparently. If it's a virus, just have to wait it out. I'm already on Prednisone and pain killers, the right choices too. So nothing he can do that isn't already being done. He said to contact my neuro. Back to square one.

Here's what the swelling along my jawbone looks like: Take a hard-boiled egg cut lengthwise into about thirds. and apply one of the rounded pieces to my jaw. He calls this a small swelling. What does a big swelling look like? I hate to think. It's very tender to the touch, but otherwise things are much better in the pain department, thanks to steroids, etc. Tomorrow is my last dose of Pred. I shudder to think what might come subsequently.

And Alex, I wouldn't change places with you. I just want you  to get better.

ess

[4happygnomes]

I'm so sorry you are dealing with so much pain and the unknown, sounds absolutely unbearable!  I hope you can get relief soon!  

Karen

[HVAC]

I would not trade you for that pain. I had dry sockets with my wisdom teeth. Since then I can't take facial pain of any kind. I will pray it will go away.

Alex

[cjtmn]

Just thinking of you today - let us know how it goes at the ENT.

[TLC1104]

Hi,
So sorry to hear what you are dealing with at the moment,  hope they finally sort it for you soon.
Take care
T

[Corriel]

Good grief, I shuddered in horror reading what you are going through. Thousands of gentle hugs coming your way.

I pray the ENT has answers as well that end this suffering for you.

I was completely thrown to read that the swelling was infection. I had no idea that could happen.

Corrie

[ConfirmedRachel]

So sorry to read your post Hun, sounds like you've had a really rubbish time of it.

I used to work with a girl who got stones in her salivary gland causing large swellings and pain. I seem to remember antibiotics for that, though you said one doctor lanced it already and found infection?

Fingers crossed they find what is causing things quickly so they can give you the best treatment.

Does an ice pack help with the pain/swelling, or have they advised you on any other non-med help in the meantime?

:-(

Nx

[immisceo]

I hope you get some concrete answers today. This sounds like something out of Dante's Inferno! You're really going through the wringer (multiple times) with this. It's really a wake-up call to me—how difficult it can be with MS to not have medications potentially cause a cascade effect themselves or for possible unrelated issues to be incredibly difficult to tease out. What a mess!

I'm so, so sorry you continue to go through this. Please vent, any time day or night. I and many others are thinking of you.