facial numbness

[tof]

I've experienced facial numbness for 7+ months. It is exactly half my face and only numbness, with no accompanying paralysis. My tongue, throat, left arm and outermost 2 fingers are occasionally affected.  I've also had pain & vision problems in my left eye (problems focusing - come and goes).  Occasionally, I get flashes/waves of numbness across the right side of my face/ear as well. I am extremely fatigued (but have two small children, am trying to finish a graduate degree and have a busy life, so?). I get frequent colds, conjunctivitis and sinus infections. Have had swollen, stiff fingers for years (not severe). Occasional severe vertigo (min - days) prob. allergy-related. Normal CT & MRI (w/o contrast). Mother died of PSP. No family history of ms.

1) What tests shd be done if sympoms do not resolve themselves? What other possible causes could there be for such symptoms (that have not already been ruled out by tests for thyroid, Lyme, CT and MRI)?

2) Could sympoms that last for this length of time possibly be a manifestation of a migraine aura?  I had two bad migraines, but these seemed to be isolated incidents related only to the use of Provera, and never reoccurred once I stopped the medication.  If yes, is there any migraine medication that can be taken to prevent "aura-only" migraines if they are disabilitating?  (Tried tablets to be take upon the start of the headache, which did nothing except cause a nasty drop in blood pressure).

3)Cd these symp. be adverse effects from Effexor use (lowest dose)? I've NO symptoms indicative of a panic disorder!

THANX

[CCF-Neuro-M.D.-PW]

Left and Right facial numbness can localize to the trigeminal nerve on both sides anywhere from its origin in the brainstem through the nerve roots and the peripheral parts of the nerve that supply sensation to the face.

There are a few typical things that can cause bilateral symptoms. Lyme is one of them, but is relatively rare,depending on where you live (the tick that transmits Lyme only lives in certain areas such as New England). Sarcoid is another possible cause for bilateral cranial nerve dysfunction - tests include a chest xray, and sometimes a conjunctival biopsy. Diabetes is another diagnossi to consider.

Another cause is MS, and this might need to be looked into by your doctors although you do not seem to fulfill any criteria for this diagnosis as yet - a visual evoked potential test given your visual symptoms may be appropriate, and an MRI as you have already had done. A normal MRI is not suggstive of MS. If the tests are still negative, a spinal fluid analysis may be necessary.

2) Migraine can cause symptoms without headache, usually in older patients with a prior histroy of migraine. I don't know how old you are, but in any case, this would be a diagnosis of exclusion.

3) unlikely

Good luck

[tof]

PS. I am 44 years old.

[bdrn]

I too have similar symptoms that started 7 months ago:  Left sided facial/tongue/palate numbness, left hand and foot numbness (altered sensations).  Occasionally felt on right side face. Numbness pretty constant except for occasional episodes of some decrease in numbness. Have had all the routine blood work, all negative.  Had head MRI w/out contrast...NORMAL results.  Cervical MRI normal except for multiple areas of disc protrusions. History of hernaited disc L4-5, already had one disc repaired. Now being sent to a stroke specialist for eval, although doctor doesn't think it's a stroke.  Said maybe a problem with a small vessel in my head. Doesn't think it's MS at this point. No one can give me an answer as of yet.  Only thing I can relate the numbness to is it all seemed to start (with left face intermittent numbness) a few years ago when I started taking statin drugs for high cholesterol.  Are you on any medications?  Hope you get an answer---maybe that can help me out too!  Good luck.

[rsrn]

Hi, I have a similar dilemma. I "passed out" in the shower-woke up with horrible vertigo-Right facial numbness and weakness in both legs. I now see "floaters" and have trouble swallowing. Two er visits and an admission later-no answers. MRI w and w/o gad show "empty sella" which doesn't explain any symptoms. I can't work or take care of my family. No one can explain any cause except "maybe viral inner ear infection". I feel like they think I'm crazy. I've never been sick before. Good luck-maybe we can both get some answers

[dmed76]

Have had similar symptoms for over 2 years now.  I am a 30 year old mother of 3 girls and starting to really get frustrated with the symptoms.  Test after test has come back negative and tingling and vision is slowly getting worse.  Neurologist has no answers and is going to send nme for University evaluation.  Hope I can get some answers to share with you.  Good luck!

[teefig]

I have been experiencing almost the same symptoms. Left facial numbness (with tongue occasionally numb) and twitching in the left side of my lip. I have gone through all the same types of test: Blood, Lyme, EKG, Ecocardiogram, MRI of Brain & Cervical Spine all NORMAL, but EEG (measurment of brain waves) test came back with "An Extraordinary weakness in the left side of my brain"!!!!????? The doctor wants me to go into the hospital for 3 days of monitoring. To see what is exactly happening in my brain when I have the "episodes" (the twitching, etc.) I dont understand why all these people are coming out with these symptoms, and NO DOCTYORS know what it is???!!!! Frustrated along with all of you :)

[bdrn]

Wow, I thought I was the only one with these symptoms.  I am a RN, yet never came across anyone with similar symptoms.  My neurologist did mention that sometimes women have these symptoms, and they never find a cause, it's just something going on with something in the brain.  I wish I knew what causes it because I am frightened an MRI might show MS (in the future).  Will let everyone know what happens when I see the stroke specialist in a few weeks. Also, neurologist did mention he wanted to get another head MRI at some point. So, it seems we all wait and see if someone can come up with an answer.  Good luck to all.

[Pickup1]

I started having numbness and tingling on the right side of my face, so far just the outter area, almost 2 yrs. ago. I was 5 1/2 months pregnant with my second child. Ob told me to go see a Neurologist, but by the time I could get in all of it had gone away. It comes and goes, sometimes it is worse than other times. I also will wake in the middle of the night flat of my back but unable to move my arms b/c they are so numb. Sometimes it both arms, sometimes it's just one arm. I had a pcp tell me when I was 16 he thought I had very early stages of MS. I've had MRI's w and w/o contrast and nothing shows up. I'm 30 now, at the right time for MS to really be surfacing.

[jmomtotc]

Symptoms like these are frustrating.  I too have been dealing with strange things that are going on with me.  I have been having arm and finger numbness on both sides with my right arm being worse.  Both of my legs twitch and the muscles seem to burn when I am resting, my muscles seem tight in my entire leg and feet.  My legs feel very heavy and I have also had vision disturbances in my right eye, vertigo and my hands seem very uncoordinated.  this has been going on for three weeks, I have made an appt with doctor for today but have been to the clinic and my husband made me go to er two days ago when my face and neck went numb and I had a hard time talking.  Both places told me it was anxiety which really bothered me as I was not anxious until this started happening.  At first I was worried I had als or a brain tumour but have talked myself out of that.  Any ideas what this could be?  I have two young children and I am becoming a nervous wreck!  I am 30yrs old and other than vertigo and some numbness in my hand about 4 months ago nothing like this has ever happened.  Thanks

[dgrn]

Wow, I too thought I was the only one, and it was just some weird thing that would go away. I have right sided facial numbness from chin to eye, with intermittent pain and burning-though sometimes it just feels cold. Also encludes right lips and palette. At first I thought maybe it was a problem with my teeth, but the dentist said no-my teeth are fine. Then I had a sinus infection and thought maybe it was related to that. But the neurologist said no; and the MRI with and without contrast was normal. So now I have to have a spinal tap.I don't seem to have the effected extremeties like some of you though. Well, I hope we all get our answers soon. Not knowing is the worst!

[celf]

I have  had left side facial numbness for approx. 5 years. I was in a vehicle accident.  I have two herniated discs in my nect c5-6 and c6-7.  There is a nerve that runs right in front of my ear and down into the back of my skull and neck.  Sometimes if I move the wrong way, something sort of twangs the nerve, like plucking a guitar string.  This causes quite a jolt.  I also feel like I have an ear infection and a sore throat.  Is there anything that can be done?  Does anyone know what nerve it is?

[Sallee,RN]

Nice to know I'm not alone. Apx 1 year ago I started having a feeling like something stuck in my throat or like I needed to burp - couldn't put my finger on it. Usually went away at the time I ate. Upper GI showed nothing other than slight gastritis. Started having numbness to gums and tongue in about Sept.- thought maybe due to chemicals in my spa - chest x-ray and labs all normal. Was put on Neurontin - did not help --went off it. Then in January I had an episode where it felt cold behind my left eye than later in the day - left side face, arm, and leg got numb and tingly.  Never any weakness.  CT scan normal,EKG normal.  Happened agian in a couple of weeks. MRI of brain normal, carotid ultrasound normal. For the last 2-3 weeks it sometimes goes to the right side but for most part left. Now my head and ear sometimes feel numb and cold inside. Constant for the most part but decreases at times. Vision in left eye sometimes feels blurry.  Gums and palate almost always numb. Now figured out that the feeling like something stuck in throat must be numbness also. Have an appt. with neurologist next week. SO glad to hear I'm not crazy - or at least not alone.

[jen9098]

I'm so glad I found this site.  I, too, am experiencing facial numbness on the left side.   I have just started to see the doctor for these symptoms.  My blood work came back normal.I am scheduled for an MRI w/and w/o contrast and to see a neurolgosit.  I looked up my symptoms and it seems to be close to MS.  I'm glad to hear so many people have ruled that out-but I'm equally frustrated and concerned.  

I also have been having migraines, vertigo, and occasional numbness in my left foot.  I am extremely exhasted but, like others, I have 3 very young children and a very busy life.  At times, I have pain in my left eye and today I had difficulty swallowing.  At times, I'm also forgeting very minor details.  Oddly enough, these symptoms seem to come and go.  Some days I'm very sick and other days I just experience mild vertigo.  I also have had the twitching around my mouth on the left side.

I'm 28 years old and have been in good health-nothing major.  I, too was taking effexor and recently stopped because I thought it could be related.  Today my BP was up and my cholesterol recently went up.

I hope everyone starts feeling better soon.

[Sallee,RN]

I didn't say earlier but I am 47 years old and have 2 kids left at home. Tired at times of course, but n In thinking about what might been causing this..some things that I wonder if it could be caused by - I'd be interested to hear from everyone to see if there is any relation. Environtmental? I live in Northern California. Mold? We had mold growing next to shower that they claim has been taken care of. Chemicals? As said before - I have a spa that I use almost every night and use Baqua Spa chemicls. Prescription drug related? I Take Estrace (homone), Ambien (for sleep), now Wellbutrin (to see if this is stress relaated) Past use of recreatinal drugs?  In my much younger and dumber days had tried marijuana, cocaine and methanphetine.  If anyone feels like commenting on any of the above, I'd be interested to hear from you to see if there might be any relation.

[Sallee,RN]

Two other things: Auto accident/chiropractic addjustment related?? I was in an auto accident many years ago and have occasionaly been seeing a chiropractor for back pain and tightness to my neck and shoulders.

[dimarie]

Hi, I too have similar symptoms; right side of my face is
tingly/numb and now the corners of my lips turn downward.  The
muscles in my face have become very weak.  Yes, the neurologist
thought I may have MS as well but the spinal tap was
negative.  I have had CT scans which were normal and MRI's with and w/o contrast that show lesions in my brain which the neurologist says are due to the migraine headaches I use to have.  These symptoms have been going on for the past 1 1/2
years and started with tightness in my forehead after nose surgery.  I have had a bone scan done to rule out osteomyelitis and blood work to rule out Lyme disease which also came out negative.  I am beside myself.  I am 43 y/o and have 3 children
to take care of, one college student and two in school, the youngest is 5.  I, too am very tired and have been put on Lyrica
(the new neurotin) by my neurologist, when will this all end?

[tstorm]

I am going through these same things .  At least now I know I'm not imagining it .  About two weeks ago I exeprienced numbness on my left side of my face ...It was almost as though a clear invisible line was drawn right down the middle of my face .  I went to the hospital . I have had several different types of MRI and MRA type tests  with and w/o contrast . on my head   thorax etc . I also had a CT ... some sono type tests on my heart and carotid .  more blood work than I ever thought was possible .  

They ruled out stroke, Lupus, MS .... One neurologist said that it was consumption of MSG . I dont use MSG .  

I am also experiencing tingling / numnbbness in two of the fingers on my left hand .. the baby finger and the rng finger .  This seems like it can be a completely different problem . maybe a compression of a nerve near teh elbow ....  the facial numbness has nort really gone away .... sometimes it is worse .   Two days ago I woke up with some really nasty sinus congestionon one side of my face -- you guessed it : my left side and that side of my face was / is almost completely numb .

Ilive in an area where I though you just dont get LYME disease ...

The numbness also gets much worse when I am very stressed .  Every time I am reminded that hurricane season is coming it is almosty automatic . I feelk the numnbness creeping up on me .  any ideas ?  

What questions do I ask when I go to teh doctor?  I have only been home fronm the hospital for a few days ....

I am 41 ..I dont take any Rx medicines ., I o0ccasionally take liquid Guafenesin for congestion. I ahve never been sick  before . also menses just suddenly stopped about 5 months ago.

[jen9098]

I have never used recreational drugs and the only Rx I've been on was Effexor, which I stopped taking.  I don't have mold or spa chemicals.  I've never had facial surgery.  I've was in a car accident & had chiropractic treatment but nothing recently or coinciding with these symptoms.  None of the other "suspect" causes seem to fit for me either.   My family dr. did say that it is possible that it could just be migraines.  I have looked into them and there are a lot more symptoms than I imagined including facial numbness.  I didn't know it but they can come even without a headache.  

Since my symptoms come and go, I immediately take either Excedrin Migraine or the migraine rx my doctor gave.  If taken early enough, it does seem to lessen the other symptoms.  Maybe someone else could let me know if this helps them, too.  It at least makes it bearable.  My children are 9mos, 2 (just in Feb), and 3 (just in Jan.), so needless to say, I am having a horrible time with this.  

Also, when did everyone start experiencing these symptoms?  Could it be something environmentally?  Does anyone else have seasonal allergies that may have something to do with this?  I started drinking more water and trying to improve my diet to see if this helps.  I'd like to start exercising more but I'm afraid to with the symptoms w/o having a diagnosis.  I will look further into lyme.  

Thanks for everyone's help.

[Sallee,RN]

I really don't feel as though it's Lyme disease and there are so many symtoms for it - it seems as though anybody could fit into that.  I did however go to the neurologist yesterday.  He believes that it is "migraine equivalent" which are migraine symptoms minus the headache.  I looked it up on the internet and it sounds entirely possible.  (I do have a history of migraine headaches but have not had one in about 2 years.)  In any case - he put me on Verapamil which is used to treat migraines.  Said it may take about a month for it to work well if it does.  I do have an appointment with another neuroligist for a second opinion next week.  I will keep you posted.

[JonasRN]

After 10 years of having 1/2 of my body being - only way I can explain this is - the right side of my body is 'hypersenitive'.
I had one event that hit me in my early 30's - I swore I had some sort of stroke event but after the million dollar work-up: Nothing. So, being an RN - I figured someone someday will figure out that I'm not just making this stuff up.

You all know the feeling of having 1/2 your face and other parts feel completely different that it's suppose to. Of course they can't find it on radiology films, blood tests, or on physical exam - so, they don't know WHAT to call it.

I've had enough MRI's and CT's to light up Vegas. And yet, another MRI next month. It's never MS (which is a good thing) but they won't see anything...except brain - I hope.

One MD said I had migraines. I told him - "I must have had the longest migraine in history" at that time it was 6 years.

When I'm sick with something else, the hypersensitive is worse. It's odd to have the inside my mouth feel different than the other side.

I know one day someone will figure this out and I'll finally have closure. In the meantime, I just try to live the best way I can and take medications (which I HATE to take) to make me feel like I want to get out of the bed and go to work.

If anyone every gets a diagnosis - let us know.

[bdrn]

It seems like there are a lot of R.N.'s out there with the same symptoms...very strange.  Well, I said I would let everyone know the outcome of my visit with the stroke specialist.  After he looked at all the scans, I was told everything I already knew:  no evidence of brain mass, no M.S., no stroke.  In the end, this doctor said he really had no idea what was causing the numbness but perhaps it was stress related and I should consider starting medication to make me feel less stressful.  Let me tell all of you out there with similar symptoms----I am an educated person, an R.N.  Yes, I have the everyday stress associated with "living".  I came out of there (and by the way the doctor was at a major Boston teaching hospital and on staff at Harvard) feeling because I am female, and have had all of cardiac/neuro, bloodwork negative...perhaps all of my symptoms were being brought on by stress.  If the symptoms were caused by stress, I am sure they would have started when I was in labor for hours delivering my first child!!  Now, that was stress.  So, here I sit with the same symptoms, no answers, and a doctor (who was male) telling me this is all stress related.  Makes one feel less confident in the medical profession (even though I am in the profession).  I do hope someone gets some answers that can benefit us all.  Good luck to all with similar symptoms.

[jen9098]

Well, I went to have my MRI done today only to be turned away.  Apparantly, there was "miscommunication" between the Radiology center and my dr office regarding the appropriate forms needed for my insurance.  I find it hard to put such serious matters in the hands of people who don't even know what paperwork is needed.  I am so frustrated.   The twitching is very bad today.  My husband and parents are becoming more and more concerned.  

I do have many of the lyme symptoms and went to have a blood test done today.  I will follow up with my dr. and present him with the symptom list on canlyme.com with my symptoms highlighted.  I did start seeing a psychologist who thought I was depressed, possibly bi-polar, had panic attacks, and anxiety.  I never really had a history of this and didn't really think I was having that many problems.  I stopped seeing him.  I thought it was odd that Lyme had those "misdiagnosed" disorders listed. It seems odd to me that I could have it, but I'm willing to look into anything that might give me some answers and help.  Carol, your help is appreciated and I understand your frustration with your misdiagnosis.  Thank you for trying to help others avoid a similar situation.

As far as stress is concerned, I am stressed.  But I have been more stressed in my life without ever experiencing these symptoms.  So, I too, doubt that this is the cause.

I'll let you know what happens.

[Dianem]

Hello everyone
I also thought I was crazy, or being accused of hypochondrai! I have the exact same symptoms, constant sinus infections, numbness on both sides of my face, right above eye. Numbness in hands, weak right arm.....sometimes numbness in feet, been to 2 neurologists in the past, one did brain MRI, there were some lesions on the brain, this was over a year ago....also had c-spine surgery at the 5-6 level due to a fall down in 2003, am going to both Doctors this week, symptoms getting worse. Also was tested for Lyme about a year ago, negative...i'm seeing one of the BEST neurologists in Western New York, also my other was/is chief of Neurosurgery at a local hospital, think between these 2 something can be accomplished!
I wish everyone luck, I'm also a little nervous about losing my job, but there are times when these ayymptoms are so severe, i can't work.
So, if anyone has any information, suggestions, etc, i would appreciate it.
Good Luck to all.

[plant]

3/30/06  About 2 months ago I started having tingling in my chin. Since that time it has progress to a horrible numbness on my left side face.  It slowing moved upward toward my eye and then across my nose.  Now my whole left side of face is numb, including my nose.  I saw a dentist, who said it was not my teeth.  I saw a TMJ doctor who, who after looking at the first mri and cat scan that he thought it was deeper into the brain area.  I have since had another mri and blood test and the neurologist said that the radiologist thought it was a viral infection that has infected both the nerve and surrounding areas.  I had a spinal tap to rule out my low grade non-hodkins lymphoma, mls, lupus.  All that came back ok.  I had a blood test to rule out lyme disease.  The doctor has now put me on anti viral and antibiotics.  However, each day this gets worse.  

Does anyone have any ideas?  It sure makes you feel sick.  I have not lost my muscle control.  Severe numbness on left side of face, nose, and above ear and now spreading to all of lips.  Help!

[jen9098]

Well, in the last couple of days, my symptoms have become severe.  I went to the ER at a large hospital in hope of getting some answers.  They ran all the tests, everything was normal.  The twitching became very forceful muscle spasms and contractions.  My hands have been curling inward and my forearms have been beating at my chest.  I also started breathing irregularly (gasping, etc).  The ER doctors wanted a neurology consult before they discharged me based on my condition.  She said that she believed it was a movement disorder like Parkinson's, Tourrette's, etc...  She said she would have to wait to see the MRI results to know for sure.

Talking it over with different family members, someone suggested that I looked like I was going through withdraw.  We called the pharamacist to ask about these symptoms and whether or not they could be related to stopping Effexor.  She said absolutely.  She was sure that was what was causing it.  I then did some research on my own.  I read that many of these drugs have severe withdraw symptoms.  This drug stays in the fatty tissue of your nervous system for quite some time.  I also read that the withdraw may last for up to a year. (Good news and bad).

If anyone has stopped taking certain meds, I suggest you checking out this website:   www.prozactruth.com  This will give you a bunch of meds and the withdraw symptoms, too.  Sometimes these symptoms can be side effects as well.  Many doctors are unaware of what these drugs do when you stop taking them.  They learn about them through a pharmaceutical sales rep.  Hope this helps some of you.

[a.e]

Hi. I am somehow relieved to see this forum. I am 34 years old. About two months ago, my left lower eyelid started to move. I did not take much notice until later it became serious. Sometimes I would wake up because of the movement of my lower eyelid. Then I went to see an eye specialist, she said that I had quite seriuos infection under my left eye and prescribed me some eyedrop. It helped and stopped the sympton within three days. However, some other things followed it. Starting from four weeks ago, there were strange feeling under my eye, kind of tightness, then it moved down to my left chinbone area and nose, then to my mouth. From last week on, I also started to have numbness on my tongue and throat. In addition to that, my right hand started to shake occasionally, especially in the morning and when i get nervous. I am getting more and more worried. I have done MRI but apparently it did not tell much. I am going to see a neorosurgeon this coming Wendesday. It would be good if anyone can share their medical history and comments on my symptoms. I just arrived in Germany for a postdoctoral research work (the symptoms started as soon as I arrived in Germany). It is extremely difficult for me because I don't speak German and no families and friends around me....Thank you all!!

[pollyanna1]

Have any of you guys asked your doctor about bells palsy? I have been suffering from left facial numbness, diffuculty shutting my left eye, diffuculty speaking, and a severe pain right behind my left ear.  Bells palsy is most commonly caused by the herpes simplex virus 1.  The type that causes fever blisters.  This condition can be treated simply by taking zovirax or valtrex.  It is also sometimes treated with prednizone.  The results are better if treated immediatley, with symptoms only lasting a week.  You can look up bells palsy in google and find out more info and symptoms there.
My symptoms started with a pain behind my left ear, which I figured was just an earache.  Then I woke up with the facial numbness that got worse as the day progressed.  After telling my doctor that I had been suffering from recurrent outbreaks of fever blister within the last two weeks, he said that the virus can manifest itself in your facial nerves, (nerve 7 I believe) which can cause the numbness to the face.  I have been taking zovirax for 3 days now and I am starting to feel much better.  The numbness is beginning to go away.  Be sure that if any of you are having difficulty blinking your eye on the affected side of your face, to wear a patch of some sort on the eye, as this could cause foreign material to scratch your cornea and cause severe eye damage.
  Hope this helps some of you guys.

[jen9098]

My symptoms have finally started to decline, it has been almost 2 months since they started.  I seemed to have reached a peak last week indicating that it very possibly could have been withdraw from meds.  

I also thought that it could be bells palsy-but I had too many additional symptoms.  However, according to the website www.prozactruth.com, Bells Palsy can be part of the withdraw process.  So, I guess, in a way, I did have that.  I was so shocked to see so many meds on there-even Ambien!  I really didn't think that would have that kind of effect.

To a.e.:  My heart goes out to you.  I couldn't imagine going through this alone w/o friends and family and in a foreign country.  Please take comfort in knowing that so many of us have experienced this and there were so many negative test results.  Before I found this site, I was convinced I had something terribly wrong with me.  I never knew of anyone else experiencing these symptoms and thought for sure that I must have a brain tumor or something of that magnitude.  The symptoms are awful and the fear and axiety over them doesn't help.  Try to stay calm, enjoy Germany, and concentrate on your work.  I'm sure you will be okay & I'll keep you in my prayers.  Like I said, mine has almost passed and I think from the lack of posts lately, many others may have, too.  Hang in there!

[a.e]

To Jen9098,
Thank you very much indeed! I"ve been going through some horrible time since three weeks ago. I constantly wake up midnight with horrible nightmares which are related to my face and eyes. In the last several days, I also started to have numbness on my left forearm. My fingers sometimes shake, although not severe. They stop shaking as soon as I start doing something. I am even worried about a possibility of Pakinson's disease. God, I am only 34. The symptoms on my face, as you mentioned, come and go. Sometimes I just feel perfectly normal. However, the numbness (or tightness) around my right eye persist most of the time. I am also experiencing some numbness on my tongue and throat occasionally, most of the time at evenings or at nights. Do not have swollowing or speech problem so far as some others have experienced. I"ve done a MRT scanning and the possibility of having tumour has been ruled out.
thank you again and I am very very happy for you that you are getting better!! HOpe you recover from whatever you have suffered fully.

[Sallee,RN]

I went to antoher neurologist for a second opinion and he also said that he thought it was "migraine equivalent".  I think we found the answer to my problems!  Since they have put me on Verapimil, it has been TWO weeks with NO symptoms!  I know that doesn't sound like much, but I seriously had not gone more than 3 days without numbness since last April.  For those of you who have symtoms like mine, you might mention the Verapamil to them. I am on 180 mg at bedtime.

[jen9098]

To Sallee:  Congrats.  I'm happy you finally found relief!  This has been such a scary & stressful situation. It is re-assuring to know that two neurologists gave you the same diagnosis.  I'm glad the medication is working for you.


To a.e.:  Hang in there.  Like I said, I reached a peak with my symptoms and it was bad.  Really bad and very scary.  The good news is, once I got over that hurdle everyday got better.  It seems as though these symptoms are indicative of many different problems, and slowly everyone is finding relief.  You will, too.
The shaking in my left hand started like yours and it did get worse, so be prepared that it may happen.  However, take comfort in that it didn't last long & it did get better.  I also had really bad nightmares.  Not necessarily related to my face but scary & morbid and I was recalling them with complete accuracy.  Sometimes I really had to sort out what was real and what wasn't.  I felt crazy.  That, too, has subsided.  I also thought that I could have Parkinson's disease.  The tremors, spasms, and shaking has stopped.  I still have occasional numbness and headaches but not to the same degree.
Good luck and stay calm.  The more stressed I got, the worse the symptoms became.

[a.e]

Congratulations Sallee and thank you Jen9098,
I just visited  the neurosurgeon early this morning. Although there were some communication problems because he did not speak English very well, somehow after carefully examining the MRT scan result of my brain and other external checks, he reassured me that all the symptoms were related to stress and anxiety and they will fade away slowly. There was no inflammation on my nerves and brain according to the scan result. The neurosurgeon simply asked me to relax and also, whether I would like to take some anti-stress medication, a suggestion of course I declined because I did not see any necessity in taking drugs,  it might only  make things worse. After seeing the doctor, I felt somehow relieved, though not fully convinced by his diagnose.  I guess I just have to try to forget about all these symptoms (I don't know how) and convince myself that they are not a big problem and they will dissapear one day.
Glad to know all of you and I will keep visiting this site.

[Margalit]

I'm so happy to have found this forum! I have had intermittent dysesthesias/paresthesias for many years--numb legs, arm, face. They come and go, and when I was younger, I was very frightened that I might have MS. Two normal MRIs eliminated this fear. (I cannot even bring myself to think about ALS.)
About 4 years ago, I experienced excruciating pain in my right ear.  I was just sitting at my computer! I saw my PCP, but here was "nothing" there. It subsided.  Several months later, I experienced it again. Very sharp pain, exacerated by turning my head, which made it feel as if a fishhook were in my ear, extending down my neck.
Many years ago, I noticed that my smile was asymmetrical, and my PCP suggested that I had had a mild case of Bell's palsy some time before. I can force a smile that is perfectly symmetrucal, but if I just begin to smile, my left side smiles and my right side does not.
Over the past year, the ear pain is more frequent, and when there is not frank pain, there is a hypersensitivity that drives me crazy. I can't wear a hat, or earphones, can't sleep on my right side.  In addition, I have numbness, tingling, and sometimes itchiness on the entire right side of my face, head and scalp. extending to the bony area behind my right ear. It now includes the right side of my tongue and throat. Sometimes my ear gets bright red. (I also have had Reynaud's and tinnitis for years.)
The initial ear pain started about 10 days afer cataract surgery, but that was on the otjer side. A year later I had the right eye done. (My ophthalmologist was quite surprised because I developed these cataracts in my mid-40s. My vision is crowded with so mnay huge, dense floaters that I have been offered a floater-only vitrectomy, which I am given to understand very few surgeons offer to do.) I did have a retrobulbar block for the surgery, and wonder if there was some damage to a facial/orbital nerve. The ENT I saw suggested that it might be a post-herpetic neuropathy, if, in fact, I did have Bell's palsy long ago.
Seeveral years back I noticed that I have a sort of cyst at the back of my neck. It's quite mobile, and scoots behind my C spine if I move my neck. Thus, it doesn't seem as if it would be compressing anything.
Has anyone ever experienced this intermnittent excruciating ear pain, along with residual hypersensitivity of the external ear?

[jenni613]

I am so glad that I found this site.  About a year ago, my husband started experiencing numbness in his feet.  He assumed that maybe he was having a problem in his back or something and kind of let it go for a long time.  Now, about a month in a half ago, he started getting these servere migraine like headaches.  Then about 2 weeks after the headaches, he woke up one morning with discomfort in his face and jaw and assumed he had a dental problem.  By the next day, the right side of his face was numb and drooping.  We went to the doctor, who said it was probably either lyme, bells palsy or diabetes.  But then things changed. Lyme was ruled out by blood test, no bells palsy, and no diabetes.  His white blood cell count was elevated however and so were his lymphocytes.  So was his blood pressure and it remains elevated, not dangerously, but that bottom number frequently comes up over 100. No one is prescribing any medication for that either.  He went to a nuerologist who ordered a bunch of tests (we were also turned away for an MRI 2x at a hospital in NJ for paperwork issues) and nothing came up.  Everything was normal.  Now his left side of his face is also numb and drooping, he also had some kind of seizure like episode immediately prior to losing his left side of his face.  Not a stroke.  He described seeing like flashing lights, tingling in his face and left arm for about 2 hrs.  Went to the ER.  They ruled out stroke and sent him home.  His vision has since been affected also.  He can no longer drive due to double vision.  The headaches keep coming and he complains of being very tired, "woozy" and "spaced out".  This is taking so long.  Since the MRI, Cat Scan, & EMG all seem to be normal, we are at our wits end.  He is getting worse by the week every week a new symptom and no answers and his neurologist won't even give him an appointment for follow up for another two weeks.  I can't even talk to his neurologist on the phone because calls to his office are deflected to a call center like environment where an operator continuously puts us off.  She also happens to be the one setting the appointments.  Very frustrating.  No answers and no one is doing anything.  Any thoughts anyone?  Please help.

[bobbb]

Wow, this makes me feel so much better, Im not alone. Age 48 mother of 3, numbness on left side of face, today my ear started feeling weird. All started about 2 weeks ago, intermittedent.  My left eye is red constantly. I'm on the computer at work all day.  Pretty scary to think this will continue for years.

[con114]

hi everyone, i am a 41 y/o active mom w/ 2 kids. Around 2 mos ago i started experiencing some drooling and rt facial numbness- after 2 weeks of rt side numbness, i now have it on both sides. been in hosp-had ct scan/mri/mra/spinal tap/ series of all bw (inc Lymes)- everything is negative. my neuro feels that i need to rest and put me on elavil for 6 wks. I am going crazy!!! the neuro thinks it's stress and i can't help thinking something else is going on. i saw a dentist-everything was ok. am now considering an ent. at this point i wouldn't even care if i was told i had a disease-just need an answer from someone- i hate living like this-it's not painful but i feel like it's controlling my life. if anyone has experienced the sensation of drooling WITH the facial numbness pls let me know. my tongue and my throat has gone numb only once-but it was very scary. everyone keeps telling me not to think about it, but i can't help it-it's not NORMAL! Well thanks for listening to me and i would like to hear if anyone has any suggestions.

[Sallee,RN]

Yes - I had drooling also.  The Verapamil is still working well. It feels SO good to feel normal after a year of this. You might ask your neuro if "migraine equivalent" is a possiblity. I would be interested in hearing what they say.

[womanly]

Hi there,
I have in the last couple of weeks been having some sort of numbness is the best word I guess to explain it, in the tip of my tongue and top lip.  I was using a cold sore ointment with Aciclovir in it and I wondered if it has caused damage to my lip and tongue.  The numbness of sort is in exactly the same place as the cold sore was and I use to lick the sore with the tip of my tongue constantly!!! I am hoping this is the cause as I am dead scared it may be something more dreadful!!!
Any advice would be appreciated....

[B54]

A related discussion, Left Facial Numbness & Needles was started.