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pulsitile tinnitus and facial neuropathies, bells palsy
over 2 years ago I woke up one night realizing a had a pulse quite loud in my left ear... went to ent, sent for doppler (carotid?) and mra. I can stop the sound by pressing on this artery against my masoid. and the sound will change in pitch. Can ignore it during day.. noise at night makes me crazy. anyway.. series of MRA, CTA, CTI, and MRi all benign.. although view on MRA looked like aneuysm, shown to be a curved blood vessel on better view of CTI. To make a long story short.. in the cousre of the two years.. I have continued to get facial neuropathies.. tingling.. feeling that something is there.. etc.. and have kept asking if this blook vessel could be dling something to trigger cranial nerves. These various neupathies have been getting worse.. and ai kept telling GP and Neuro they are increaseing.. ( to my nose.. and crossing midline).. last two weeks lost all sensation in chin.. lower jaw.. and very bad headache ( always on same side) seemed to be trigeminal neuralgia.. and put on tegretol.. after 10 days of pain.. bells palsy kicked in.. no movement of left side of face.. lip, eye, tear production, and still have chin numbness ( very similar to description of doloroso stage of trigeminal neuralgia).. original numbness started at midline.. and now seems to be progressing across midline. repeat MRi showed benign.. ( no tumor, anueryam) although in dye contrast.. left and right side look very different to me.. right side is lit up.. left side is dark.. I was told that this is area of blood flow.. and within normal range of blood flow distiribution.Hmmmm...
Does bells ususally take 10 days to kick in??? could I have both trigeminal and facial nerve being affected.. what is the artery that runs along top of masoid.. and behind ear.. why would this be pulsing so as to touch it? could this be effecting cranial nerves? been on prednisone for 3 days now.. no resluts.. ( relaize bells my take months) and are waiting for lynme, shingles reslutls..
has anyone else ever had pulsitle tinnitus leading to facial nerropathies.. and eventually bells palsy?? I am quite concerned and would appreciate any ideas..
are there vascular neurologists??? thanks in advance
This discussion is related to pulsatile tinnitus.
Does bells ususally take 10 days to kick in??? could I have both trigeminal and facial nerve being affected.. what is the artery that runs along top of masoid.. and behind ear.. why would this be pulsing so as to touch it? could this be effecting cranial nerves? been on prednisone for 3 days now.. no resluts.. ( relaize bells my take months) and are waiting for lynme, shingles reslutls..
has anyone else ever had pulsitle tinnitus leading to facial nerropathies.. and eventually bells palsy?? I am quite concerned and would appreciate any ideas..
are there vascular neurologists??? thanks in advance
This discussion is related to pulsatile tinnitus.
See a sleep center. Recurrent "Bells Palsy" is actually very characteristic of narcolepsy with cataplexy. In fact, often times, it's not "Bells Palsy," but cataplexy. Viruses and some vaccines (namely the H1N1) can actually precipitate this, but it can happen seemingly in random fashion, too.
It doesn't look the way you think it looks. Common misdiagnoses are depression, epilepsy, and migraines. I struggled for years to find an answer, and was misdiagnosed several times. I had it with just sleepiness during the day and what looked like insomnia at night for probably about 15-20 years before I ended up with more serious symptoms of narcolepsy that actually included cataplexy (random muscle weakness that can either be isolated, or widespread).
The cataplexy manifested first in my face, as what looked like episodes of Bells Palsy that came and went when I was tired, stressed, or even when I was happy and smiling. But when I paid closer attention I realized I got weakness and twitching (not uncommon) in my other muscles sometimes too, though I chalked it up to clumsiness until I paid attention. I also had issues with my vision randomly and sleepiness.
I went undiagnosed for about 15-20 years, until I finally saw a sleep specialist and she nailed the diagnosis right away. The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime.
I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!!
Get seen by a sleep center!
It doesn't look the way you think it looks. Common misdiagnoses are depression, epilepsy, and migraines. I struggled for years to find an answer, and was misdiagnosed several times. I had it with just sleepiness during the day and what looked like insomnia at night for probably about 15-20 years before I ended up with more serious symptoms of narcolepsy that actually included cataplexy (random muscle weakness that can either be isolated, or widespread).
The cataplexy manifested first in my face, as what looked like episodes of Bells Palsy that came and went when I was tired, stressed, or even when I was happy and smiling. But when I paid closer attention I realized I got weakness and twitching (not uncommon) in my other muscles sometimes too, though I chalked it up to clumsiness until I paid attention. I also had issues with my vision randomly and sleepiness.
I went undiagnosed for about 15-20 years, until I finally saw a sleep specialist and she nailed the diagnosis right away. The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime.
I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!!
Get seen by a sleep center!
long story short..
I had a sudden onset of pulisitle tinnitus.. AND a pulse that I can feel over my left mastoid.. on my skull..
had MRI, MRA, CTA and carotid doppler.. nothing signifigant showed up.. kept going from Dr to dr.. as my facial sensations were increasing.. up my cheeks.. and would have occasional muscle twitch.. was told pulisitile tinnitus happens.. and probably not related to my facial neuropathies.. and to just take meds.. some of the drs didn't even give me a physical exam to touch my skull... AAGHH!. FINALLY got to vascular radiologists ... touched this pulse on my skull.. said I NEEDED to have an ANGIOGRAM ( through femoral artery) this immediately showed a DURAL FISTULA.. a type of arterio venous malformation.. that did NOT SHOW UP ON OTHER TESTS..
I had surgery.. ( also through my femoral arteries ) 2 months ago.. they put in a shunt.. rather than closing off the fistula ( which is the more typical procedure) IMMEDIATELY upon waking.. the noise and pulsing were GONE.. a MIRACLE.. and a fistula CAN be dangerous.. ( bleeding ).. I have been given a new lease on life : )
SO.. the upshot.. is that I still have the facial sensations.. but I think they may be waning a bit.. they are no longer up my cheeks.. and the pain level seems to be decreasing .. I have better movement of my lower lip.. ( which had seemed swollen to me.. although this was pooh poohed by most of the drs.. ).. I do still have pins and needles sensation in the lip.. and chin ( an area covered by a branch of the trigeminal nerve).. I don't know if my face will come back.. and I may have permanent nerve damage.. time will tell..
OK.. so.. can you feel any pulsing on your head? you might really have to play around with this to find it.. I would get to a dr ..that will give you an angiogram.. ( even just the pulsitile tinnitus can be a sign of a fistula.. ) This is nothing to ignore.. it took me over 3 years to find a dr.. had to get to a major medical center.. who knew what to do..
I would definitely ask a knowledgable dr about the possibility of a DURAL FISTULA
( my case was complicated by the fact that I also tested positive for LYME.. which was most likely the cause of the bells palsy.. )
Please let me know that you have gotten this message.. I have tried before to post a comment.. but it doesn't seem to work..
best of luck.. ( the silence is golden)
I had a sudden onset of pulisitle tinnitus.. AND a pulse that I can feel over my left mastoid.. on my skull..
had MRI, MRA, CTA and carotid doppler.. nothing signifigant showed up.. kept going from Dr to dr.. as my facial sensations were increasing.. up my cheeks.. and would have occasional muscle twitch.. was told pulisitile tinnitus happens.. and probably not related to my facial neuropathies.. and to just take meds.. some of the drs didn't even give me a physical exam to touch my skull... AAGHH!. FINALLY got to vascular radiologists ... touched this pulse on my skull.. said I NEEDED to have an ANGIOGRAM ( through femoral artery) this immediately showed a DURAL FISTULA.. a type of arterio venous malformation.. that did NOT SHOW UP ON OTHER TESTS..
I had surgery.. ( also through my femoral arteries ) 2 months ago.. they put in a shunt.. rather than closing off the fistula ( which is the more typical procedure) IMMEDIATELY upon waking.. the noise and pulsing were GONE.. a MIRACLE.. and a fistula CAN be dangerous.. ( bleeding ).. I have been given a new lease on life : )
SO.. the upshot.. is that I still have the facial sensations.. but I think they may be waning a bit.. they are no longer up my cheeks.. and the pain level seems to be decreasing .. I have better movement of my lower lip.. ( which had seemed swollen to me.. although this was pooh poohed by most of the drs.. ).. I do still have pins and needles sensation in the lip.. and chin ( an area covered by a branch of the trigeminal nerve).. I don't know if my face will come back.. and I may have permanent nerve damage.. time will tell..
OK.. so.. can you feel any pulsing on your head? you might really have to play around with this to find it.. I would get to a dr ..that will give you an angiogram.. ( even just the pulsitile tinnitus can be a sign of a fistula.. ) This is nothing to ignore.. it took me over 3 years to find a dr.. had to get to a major medical center.. who knew what to do..
I would definitely ask a knowledgable dr about the possibility of a DURAL FISTULA
( my case was complicated by the fact that I also tested positive for LYME.. which was most likely the cause of the bells palsy.. )
Please let me know that you have gotten this message.. I have tried before to post a comment.. but it doesn't seem to work..
best of luck.. ( the silence is golden)
Hi. I am 23 years old and I also suffer from facial neuropathies, but no bells palsy
that you describe. I have a lot of loss of sensation and tingling pretty much all over my
face. I don't have complete "numbness" as I can still feel my face and such, but there is definitely something going on with my facial nerve. I have had a history of TMJ and neck related trauma in my life. I'm going to see doctors at the MayoClinic in Jacksonville, FL.
I have had some tests done already, MRI of brain and spine and doppler carotid ultrasound. The ultrasound found some slight narrowing of the external carotid artery that goes to my face, but when I asked my ENT if that was causing the pulsatile noise he was not sure. Since then I have also had it in my right ear as well. I just want to figure out what is wrong with me, and I'll do anything to get my life back from these afflictions. Have you had any past injuries to your neck/head? Any advice for me as to testing I should ask for about pulsatile tinnitus? Thanks.
that you describe. I have a lot of loss of sensation and tingling pretty much all over my
face. I don't have complete "numbness" as I can still feel my face and such, but there is definitely something going on with my facial nerve. I have had a history of TMJ and neck related trauma in my life. I'm going to see doctors at the MayoClinic in Jacksonville, FL.
I have had some tests done already, MRI of brain and spine and doppler carotid ultrasound. The ultrasound found some slight narrowing of the external carotid artery that goes to my face, but when I asked my ENT if that was causing the pulsatile noise he was not sure. Since then I have also had it in my right ear as well. I just want to figure out what is wrong with me, and I'll do anything to get my life back from these afflictions. Have you had any past injuries to your neck/head? Any advice for me as to testing I should ask for about pulsatile tinnitus? Thanks.
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