TN with Facial Paralysis? Anyone?
Posted , 7 users are following.
Hello, I'm new to this site. I've been googling like crazy to find some information on what I'm experiencing and I'm not having much luck. My question is, has anyone had constant pain with facial paralysis? If so, what worked best to aid in the pain and how long did it take for the paralysis to wear off?
Here is my background:
39 year old female, mother of 3, chronic migraines, DDD, some nerve damage from childhood injury, TMJ in right jaw.
Last week, I woke one morning with a ball of pain in my neck, below the ear, behind the jaw. At first, I thought I slept on it wrong. By Thursday, my jaw was killing me and my teeth on the top and bottom were hurting. I figured my TMJ was flaring up. Well, by Friday, it felt like there was pressure with the pain, so I thought maybe I was getting an abscess. I went to the dentist. He took x-rays and said everything looked good and that the pain was likely muscular and I should get a splint/night guard to cushion my teeth.
By Friday night, the pain was intensifying and I was having lightning flashes across my cheek and some numbness and tingling. I went to the walk-in medical clinic saturday morning. I thought that inflammation or something with my TMJ might be irritating a nerve. The doctor agreed and suggested that rest, ibuprofen and perhaps some valium would help if it was a muscle spasm causing the issues.
The valium did help some, but by Saturday night, i was in intense pain and my face was starting to droop. I couldn't move my mouth (right side) correctly and could feel the paralysis in my cheek as well. I also felt tingling moving up toward my temple/eyebrow.
So... off to the ER I went. They did a CT and some blood draws. Those tests showed I had no structural issues and no signs of a stroke. He thought it was Bell's Palsy, but because my eyebrow was affected but not my eye and the level of pain I was in, he wanted me to transfer to the other hospital in town, they have neuro on staff round the clock.
So I go to the other ER. They look at the reports from the doctor that sent me over. They do nothing other than take my blood pressure. They do not have a Neuro come see me. They tell me that I have bells palsy with idiopathic pain. Send me home with Prednisone and Anti-Virals.
Well, over the course of SUnday, everything on the right side of my face is now affected, including the nostril of my nose. The pain is soooooo intense. AND, I can't even touch my face. So Monday morning, I call my GP. She wants to see me right away. I go in, she has me open and close my eyes, has me describe the pain and she says, it is NOT bell's palsy and instead, she thinks it is trigeminal neuralgia.
She takes me off the prednisone, keeps me on the anti-virals and prescribes carbamazepine. I ask her for something to help with the pain and she gives me some 5mg vicodin to last two days, hoping the carba whatever starts taking affect.
It's Wednesday, my face is still paralyzed. The pain still present. The vicodin helps take the edge off so that I can eat or talk a little easier. I've been looking up TN and it seems to be intermittent pain and I can't find reference of the constant pain and the paralysis. So.... does anyone have experience with this? I'm soooooooo tired of the pain.
As a side note, due to chronic pain/anxiety, etc. I have already been on Gabapentin for some time. I take 600 mg 4 times a day, though, I had gotten down to only taking 600mg twice a day, but my doc told me during this episode to go back up to my full dose. I also take Zoloft every night.
I've tried icing. I've tried heating pad. I've tried gently applying tiger balm. I've tried a homeopathic oil with st johns wort and cayenne and some other stuff. I've been eating soft food (pudding, applesauce).
I really, really don't know what to do. I'm supposed to start physical therapy tomorrow so that my muscles don't weaken too much and neurology can't get me in for 3... THREE weeks.
1 like, 13 replies
clint71 MommaGx3
Posted
In my unprofessional opinion, you need and MRI with and without contrast. TN doesn't cause paralysis. Also, scrap the homeopathic remedies because you're only wasting your money.
MommaGx3 clint71
Posted
Sometimes the unprofessional opinions are just as good or better than the professional ones
The first ER I went to sent me to the other one and he recommended an MRI. Course, the second ER just blew me off. Now I have to wait for 3 weeks to see the neuro and I'm sure the first thing she is going to do is order an MRI. But the waiting is horrible. I'm on the emergency cancellation list, but I don't have a lot of faith in that working out.
My st.johns wort oil is one I got several months ago, I usually use it on my lower back and hip more as a massage aid than anything else. But it tends to help a little. It hasn't done anything to my face, neck other than make it smell nice
I'm just confused. It sounds like bells palsy could be like my paralysis... but my eyes open and close ok. The extreme pain and touch sensitivity sounds like the trigeminal neuralgia. THe fact that it's constant just sucks for me... could I have both?
Anyway, thanks for taking the time to read my rambling and post.
clint71 MommaGx3
Posted
It seems likely that it's nerve damage, not TN. That could explain both pain and paralysis. The real question is what's causing the damage, and is it something that will get worse over time?
There's a chance that it could be two serperate conditions, but it's very unlikely.
dan45224 clint71
Posted
patyrod MommaGx3
Posted
I have bilateral numbness of my face, moutn and scalp. I also get intermittent pains of all kinds. The rheumatologist and neurologist say that I have Trigeminal Neuropathy. That includes the numbness, which is constant, and the pains. My speech is affected and I have a drool. It feels like I have an iron mask on my face. Luckily, my pains are not constant nor as intense like those of people with Trigeminal Neuralgia. I would never end up in the emergency department like some of those poor sufferers do. But, the constant numbness makes me crazy. My doctors say that my condition is extremely rare. The numbness is sensory, not muscular, but because I can't feel, the muscles can function normally. My doctors don't know of anyone else like me. When they did the MRI, they saw that my trigeminal nerve was afflicted, but I don't remember the details. I will find out from my neurologist at next week's appointment.
patyrod
Posted
Sorry, the muscles CAN'T function normally.
tay0109 patyrod
Posted
patyrod tay0109
Posted
Hi Tay.
My numbness (trigeminal neuropathy) is sensory and has been constant on both sides since the onset 1 1/2 years ago. If anything, it might be a bit worse in spots. My mouth still droops and I still have a little drool that I have to watch out for. Since my mouth can't feel, it can't control the buildup of saliva by regular swallowing. If I bend over to pet one of the cats while talking to it, I will sometimes drip. I have cut out most of my social life because of it and my speech impediment, which is also caused by the sensory deficit.
What did your MRIs and MRAs show? Mine showed that my trigeminal nerve is inflamed, not compressed, so no surgery would ever work. They are sure that the inflamation is caused by an autoimmune factor, especially since I was struck by rheumatoid disease six months after the trigeminal problem started. They have changed the diagnosis several times. Presently, it is connective tissue disorder. Have you been tested for an autoimmune factor?
Sorry about the Bell's Palsy diagnosis. Do they know what caused it yet? Research everything and keep a list of questions to ask your doctor. If you notice a new symptom anywhere in your body, email your doctor right away. One day, I noticed that my hands were swollen and within a few days I had to take off all my rings. The joints of my fingers and wrists started hurting horribly. So, I emailed my doctor and he saw me right away and diagnosed rheumatoid disease. That all happened in less than two weeks. So, I am on medication for that as well. Now, I have Raynaud's Disease, vitiligo, connective tissue disorder and rheumatoid disease. They are all autoimmune conditions.
I was given Tegretol when all this began. Like you, I had a bad reaction to it. It wiped out almost all of my platelets and made me very sick.
The only trigeminal improvement I have noticed is that I can chew most foods now except for crunchy, sharp or hard things. At the beginning, I had to puree most of my food because I was biting the inside of my cheeks and lips when chewing. I don't know if the improvement is sensory or if I have just learned how to cope. But, my intraoral tissue has been swollen as well as numb from the beginning and my taste has been altered. Do you have any trouble chewing or has your taste changed?
I hope that you find out more about your condition. How old are you? I am 71. Do you work? Luckily, I am retired. One thing you can be happy about--relatively speaking--is that your numbness is not constant.
tay0109 patyrod
Posted
I am actually 27 years old. Just this past Friday i had another episode of excruciating pain and had to leave work. Since that pain has stopped my face has become completely paralyzed on the right side. Over the course of this last month and a half things just seem to continuously progress. I use to be able to slightly move my cheek in a smile. Now nothing. Icompleted the antivirals they gave me for bell palsy but i truly do not believe i have it. All the test were negative for any infection in the body. They didnt mention any abnormalities with my MRIs or MRAs. I truly dont know what to do. My family and i are moving friday to a new state where i will be leaving my job and i know there will be a ton of changes. I just want to speak to the best doctors that i can before things get too bad. I am raising two very small children who depend on me 98% of the time over Dad.
I have an appt with my PCP tomorrow but its just been a never ending push off with no clear answers. I will definitely ask about the immune deficiency. Thanks.
patyrod tay0109
Posted
dan45224 MommaGx3
Posted
Hello momma I'm sorry for your pain I feel sometimes going to get treatment is a big money grab I have exact same facial pain as you no one wants to diagnose because there's no money in diagnosis but there is in MRI CT blood draws that is where the money is important sorry for negative reply but that's where I'm at Listen there are two types of trigeminal neuralgia typical and anti- typical the latter is harder to diagnose which I find laughable because it's what I have just made appointment to see neurologist most are booked but I finally get to see one in March crazy by then I'm dead from pain I'll keep trying see if you can try the drug lyrica might work
dan45224 MommaGx3
Posted
Hello momma I'm sorry for your pain I feel sometimes going to get treatment is a big money grab I have exact same facial pain as you no one wants to diagnose because there's no money in diagnosis but there is in MRI CT blood draws that is where the money is important sorry for negative reply but that's where I'm at Listen there are two types of trigeminal neuralgia typical and anti- typical the latter is harder to diagnose which I find laughable because it's what I have just made appointment to see neurologist most are booked but I finally get to see one in March crazy by then I'm dead from pain I'll keep trying see if you can try the drug lyrica might work
kerri59435 MommaGx3
Posted
I was told back then that TN is not a symptom of BP. My facial paralysis and Nerve pain started same day also. It took 6 months before I started having improvement with my paralysis. Nothing was showing up on MRIs or lumbar punctures. I just suffered with the pain with no meds as nothing worked. Pain would just peak through the highest doses. I had constant pain ATN and around 50 jolts a day TN. Went cold turkey and demanded to see a new neurologist.
In 2015 I ended up having a craniotomy to explore. What was found was a vein wrapped around and growing into the Trigeminal nerve. She removed the vein. I was pain free for 18 months, then it all flared up again. Nothing showing on MRI, back in for more surgery. This time scar tissue had grown from the nerve and attached to tentorium, and causing nerve being bent. That was 1 year ago. I also had CSF leaks after both surgeries, so had to be reopened to repair. My pain has come back since, but is mild compared. It is because of damage to nerve. I still have slight facial paralysis and synkenisis.