Left sided facial pain/numbness

[hmm_md]

I just can't figure out which forum would be the best to pose this question. I'm sincerely hoping a bunch of people came over from the old BT since there are few posts to peruse for help as we restart things again.

Here's my situation: about 1 1/2 years ago I woke up one morning and the tip of the left side of my tongue was numb. Odd, but not alarming. My whole family has a tendancy to pinch nerves and I've lost the feeling in fingers and toes for weeks after minor trauma such as using scissors or wearing heels.

By mid-day the numbness progressed to the entire left tongue, my lower left lip, then upper, then cheek and ear and left eye. I was noticing dryness in the left eye and watering in the right (compensating?) as well as what seemed like a little drooling at the left corner of my mouth.

I went straight to an emergency room and with such lovely stroke symptoms was wisked straight back for a head CT. All was completely normal except a very high blood pressure (180/150). Subsequent BP checks have never shown it to be especially high -- maybe anxiety over a presumed stroke?

The numbness continued over the next several weeks so I was referred to a neurologist who found nothing wrong, then to a head and neck specialist who diagnosed me with "sensory-only" Bell's palsey. I have done a bunch of research on Bell's and it seems the consensus is that you can't make the diagnosis without motor paralysis which I do not have. He recommended leaving it be and letting it run its course.

Over the last year and a half it has evolved into a burning pain instead of numbness. The pain waxes and wanes. It seems to be sequential in that at the minimum the tongue hurts and next it's the lips then the cheek and so on. The skin around my left eye feels sunburnt and my left eye is often very dry with profuse tearing from the right. I have begun to notice that when I am especially stressed, emotional, or tired that the symptoms are at their peak and the burning in the tongue extends all the way down the left side of my throat. When I am relaxed it is usually just low level burning sensation in the tongue, always on the left.

Of note, when I went for elective surgery for gastric reflux problems, I awoke from anesthesia with my RIGHT face numb, the lips profoundly so. For about 3 days the right was densly numb more than the left, prompting an MRI and a boatload of blood tests, all normal. The right side resolved after a few days without intervention.

On the advice of Rose, on the old forum, I started taking B-12 supplements at high dose. There seemed to be some improvement but now it's the same as always. I don't know if that was just the usual waxing and waning or if it really helped.

Other issues for me that may or may not have anything to do with this is a presumed diagnosis of benign hypermobile joint syndrome. I have joints that slide around and have had numerous associated orthopedic injuries: 2 torn rotator cuffs, chronic subluxation of right shoulder, 3 surgeries on left ankle for fracture and tendon dislocation, fractured right foot, herniated disc L5-S1. I also have a history of migraines, controlled fairly easily, triggered mostly by hormones.

If anyone has a thought as to what this is or where I should go next I would be most grateful to hear your opinion. At the moment my tongue is on fire and my left face feels like I've been in the sun all day, I have a sore throat, but only on one side. A big part of my job is talking and, although my tongue works just fine, lots of talking seems to make it all worse.

[linniec]

Just guessing
1. Could this be a form of peripheral or other neuropathy?
2. Could it be a left-over from a stroke?
solution--- Contact Rowland on the stroke forum--he is very erudite.
3. Wallenberg's Syndrome: (I noticed that you have broken a lot of bones)--has your balance been off?
Any way, I am no doctor, and you may very well have had extensive tests for all of these. How maddening.



Linnie
Atlanta

[hmm_md]

Thank you for putting some thought into my problem, Linnie. I did think of peripheral neuropathy, hence the trial of B-12. I have had a real problem my whole life with pinched nerves.

I initially went to the ER thinking I was having a stroke but the CT was negative as was a later MRI when I had the right face numbness. Don't know how sensitive the imaging is for picking up strokes.

I think my injuries are from the loose jointedness, although several physical therapists have commented that my balance is terrible and the last one felt that my proprioception (sense of position in space) was almost non-existant. He thought I compensated with vision, so when he would have me stand on one foot, ok, close my eyes and I'd start to tip over.

I did have an episode in 1988 of viral labrynthitis. I was profoundly dizzy to the point where I couldn't walk or even get off the bed. In fact I was hanging on to the bed for dear life as it kept threatening to pitch me out on the floor. I had nausea, vomiting and severe nystagmus. It lasted about 3 weeks. I just looked up Wallenberg's syndrome. Wow, they sound a lot alike. So now why almost 20 years later is this popping up?

[septemberrein]

Check out the Trigeminal Neuralgia board. I don't know alot about it but have read that symptoms can include burning like sensation, electric-shock like pain and sometimes sensory loss. Not sure if it could be one-sided like you have described but doesn't hurt to check it out. GL/HTH

Sarah

[uvamomb]

Trigeminal Neuralgia is something I would definitely look into. It is usually one sided from what I hear.
I hope you get some answers - sometimes I think that is the hardest part of this whole chronic pain thing is NOT knowing why. I guess there are those of us who will NEVER know why, but, for me it is of the utmost importance. It just feels so futile to treat just pain, doesn't it?
Take good care of yourself - I do know that TN is supposed to be one of the worst pains in the world. I have a good friend who has it.
Let us know what the neurologist says, please.
Hugs and prayers,
Kathy

[babs]

Hi, I have Graves/Hashimoto's thyroid disease and Hashimoto's Encephalopathy. I had a bout of TN very nasty, it's my new 10 on the pain scale, The HE first affected my left side and then my right. I have numbnes on the left side of my mouth, lips and tounge, and have difficulty swallowing and speaking, when I am stressed. Don't know much about the Bell's except my aunt had it several years ago and she definatley had motor paralysis. The HE has caused most of my problems and the prednisone treatment many more. Good luck with a diagnosis, I do believe we respond better when we ahve something to fight.

[bobi]

Hi,
I would also just like to point out that I am not a doctor either, but reading your original post struck a cord with me as he symptoms you described were very similar, if not exactly the same as my daughter has experienced.

For her it turned out to be low cerebular tonsils, somewhat akin to a chiari type malformation (but in her case due to overdraining of her shunts for hydrocephalus) pressing on her brainstem and hence pressing on some cranial nerves at the base of her head.

I would advise reading up on the symptoms/causes of chiari malformations because there are loads of different possible effects.

regards,

bobi

[Mrs Wiggens]

The very first time I had a lightening strike from TN, I was scared to death. I didn't know if this was a stroke or what. I even thought of calling paramedics, but what would I tell them? I was caught in a panic situation and those with TN know what I'm talking about.
As a result, after two failed MVD's, I ended up in Mayo clinic for three weeks.
This is when they severed the trigeminal nerve, thus making the left side of my face numb. This also created a new pain that I have 24/7. It is not a scarey pain, but a constant pain. It has a name-Anesthesia Delorosa. Now my left side is numb but with pain. I have had a tube put in my left ear and numerous visits to the eye Doctor for dry eye. He did two or three surgeries and now I am doing better. I have had a lot of infections in my ear and my nose. I take twenty some meds a day, all geared toward pain.

[mike111]

I didn't heard about this problem.
Can you give more details?

[Nana4&cntn]

Mike

Welcome to BT! Can you describe your symptoms, there are many causes for having facial numbness/paralysis. It would be easier to help if you could describe what is going on with you.

Take care and Welcome again,
Kathy

[mercyme]

Hi I haven't posted here in a long time. I am having sharp pains in my right temporal lobe area, which then turns into a migraine but the sharp pain is off and on through out the day. Could this just be the migraine it self or could it be trigeminal neuralgia? I've had brain surgery on the right temporlobe area in 2002 but I don't think it's related. this sharp pain in new for me though migrains are not. I'm not sure what to make of it. I don't see a neurologist until July. Any information you have or thoughts would be appreciated.

Blessings,

Merycme :confused:

[haplycarlessdave]

Well, they say, depending on who you see, you'll get a different diagnoises- thus, if you ask me, it sounds like there is a good chance you're dealing with lyme disease- think back and consider the sequence of symptoms, from way back. Were you bitten by a tick? Or did you have a strange, somewhat circular rash a few days after being in a place you could well have been bitten by a tick? I just got over lyme a few years ago; it took me several years to nail it, and I had to take all sorts of antibiotics and other drugs..

The really bad thing about Lyme disease is, there's a serious shortage of doctors who really know how to treat Lyme, and if you were by chance, 'treated for Lyme'.. by a regular doctor, there's a very good chance that it was not eradicated. If it has been running rampant in your body for several months, or years, Lyme could well cause the symptoms you describe. Look around on the net for info. One good site is the "Lymenet Flash Discussion": http://flash.lymenet.org/ubb/ultimatebb.php
DaveS (multiple survivor of Lyme And Coma)

[haplycarlessdave]

The reply I made showed up on the wrong "thread"-
I'll try to fix; if I can't anybody who notices pleases etc.. .
DaveS

[lauralight]

I've not been on this list long, but am seeing similiar stories after my ownpersonal research, it's the veolvar (sp?) nerver(that dentists use to shoot novakane in can become aggrivated and cause numbess in the face fom what I can gather. However, I'm starting to see it as a huge systematic and muscle/tendon based problem comming from the SCM as I've recenly found many similiar symptoms and anxious reactions to vertigo caused by driving even only 45 minutes, I have Pectoral issues and spasms too and the symptoms are going down to my fingers on the inside of my arms, so it's a spreading effect starting at the SCM when it spasms(and it only feels tight to me)no real pain, but as it spreads it's confusing and uncomfortable and I get dizzy.

[MyaSC]

Hi!

I'm new to THIS board and have been lurking for a while. :D It sounded though like your symptoms are so scary to YOU that it would be cruel not to reply!!!

When you initially described your symptoms a light went on and I though 'Ah-Ha! Bell's Palsy!' My mother has had this 3x!!! Your symptoms were IDENTICAL UNTIL you got to the PAIN piece, and how long this has lasted. Then I thought of Trigeminal neuralgia, which is one type of Facial Neuropathy. I have some info below that you can browse and see if it sounds familiar. I'd certainly get BACK with my M.D.!!! You oughtn't be expected to just live in uncontrolled pain!

Best--
Mya

SYMPTOMS:
A defining feature of trigeminal neuralgia is the trigger zone-a small area in the central part of the face, usually on a cheek, nose, or lip, that, when stimulated, triggers a typical burst of pain.

A light touch or vibration is the most effective trigger. Because of this, many common daily activities trigger the attacks: Washing your face, brushing your teeth, shaving, or talking; common sensations such as having wind hit your face, Eating and chewing.

Many people avoid food and drink rather than experience the severe pain. These people risk weight loss and dehydration, a leading cause of hospitalization in this group.

~There are 3 branches of the trigeminal nerve: the ophthalmic, maxillary, and mandibular. The pain of trigeminal neuralgia occurs almost exclusively in the maxillary and mandibular divisions.

◦You most commonly feel pain in the maxillary nerve, which runs along your cheekbone, most of your nose, upper lip, and upper teeth. Next most commonly affected is the mandibular nerve, affecting your lower cheek, lower lip, and jaw.

•In almost all cases (97%), pain will be restricted to one side of your face.

•Most of the time, doctors cannot identify any disease of the trigeminal nerve or the central nervous system.

•Trigeminal neuralgia most frequently affects women older than 50 years. The disease occurs rarely in those younger than 30 years. Such cases are usually linked to damage from diseases of central nervous system, for example, multiple sclerosis.

Thought this would be a good resource for you!!! http://facial-neuralgia.org/

[Guitarmom]

Some of what you describe I have with my complex migraines and seizures (the migraines can last up to a couple of weeks. ) I realize that your symptoms lasted much longer. I hope you can find true help for yours. My problems were misdiagnosed for over 12 years as "sinus disease" and I was told I was just fine (after 2 surgeries caused permanent nerve damage to my face and a doctor telling me to meditate the pain away (fter he tried to get me to take narcotics for it that I refused!) He denied that I had any problem despite an abnormal growth in the sinus after his surgery maimed me. (a new sinus disease expert used the term Maimed adn told me never to "allow" any doctor to do surgery on me again!)

I tell you all this to encourage you that advocating for the proper help is difficult but crucial. It is so very hard when you are in pain and feel so diminished! I was battling for my son's health at the time as well. You are worth it all!! Take heart, you are NOT alone! I hope that you find clear answers and help!

Ginny