Bells Palsy and TN

General General TN & GPN (Old Site)
1

Is there any other TN suffers out there that have also had Bells Palsy???

I've had two Bells Palsy attacks 7 years apart on either side of my face and the most recent being two years ago on the same side I am suffering TN.

Just wondering if there is anyone else around like me or am I weird like my nurologist is telling me :)

2

I’ve been talking with facial pain patients for about 15 years, Shannon. The total by now is well over 2,000. During that time, there have been a few who have reported having been diagnosed with Bells Palsy. One of the complicating factors in this combination is that it isn’t always obvious that the patient had TN in the first place. Could you summarize for me the kind of pain you had when you were diagnosed with TN?

Regards and best,
Red Lawhern, Ph.D.

3

No you are not weird and I am glad to know now that I am not either! I had Bells Palsy about 25 years ago on the same side as my TN.

4

I don’t have Bells Palsy and TN but interesting enough, my sister has had Bells Palsey on both sides of her face, about two years apart. She has drooping on both sides although one side is worse than the other. Her right eye waters constantly and she can’t smile without it looking more like a grimace. I know that some people recover 100 percent but she’s been told that her current condition is as good as it’s ever going to get.

What about you, Shannon? Do you have lasting effects from the Bells palsy?

5

Hi Red, I was first diagnosed at the start of september 2010 with sharp shabbing pain into every tooth in my upper and lower jaw on my left had side, the pain started at night first with mulitple short attacks during the night then progressed to during the day after a few nights and then I was having them all the time. My pain seems to be triggered by cold wind or breathing in cold air, I found relief with hot water bottle and no standard pain medication helped. I started Epelim 5 days after my first attack and didnt get any relief until I was 1000mg of Epelim. I have seen a nurologist and had a MRI which showed no compressions MS or tumours. He has changed me to Lyrica and I have just finished the change over and already had to increase my Lyrica intake to 50mg instead of 25mg.

At first I did think that it was another Bells palsy attack because I had some pain behind my ear which is what I would normally get with BP, I also had a cold sore the size of a small planet on my non TN side (right) 2 weeks before coming down with TN, the doctors put me straight on a Anti viral because it was the first one I had and it was extreme. The Nurologist is throwing around the idea that my Bells Palsy and TN are linked and that the cold sore virus (herpes simplex 1) which is the same trigger for bells palsy is having some effect on my nerve.

I think that pretty much covers it.

Thanks

6

Good to know I am not weird Sharon, I know Bells Palsy can be quiet common we also have a family history but it’s interesting to here about TN suffers that have also had it.



Sharon Bryant said:
No you are not weird and I am glad to know now that I am not either! I had Bells Palsy about 25 years ago on the same side as my TN.
7

Hi Karen,

I have been reasonably lucky with only 5% residual effect to my right side(non tn side) from Bells Palsy, this was the side I had BP on when I was 18 so 9 years ago now. It took 3 months for me to get my blink back on that side. My left side BP attack only took a week so was much more mild.

Your poor sister, mine looks much worse when I am tired and it’s hard to explain to people very much like TN.

I have heard of Botox helping with the residual effects of BP, I was going to look into this last in life cause my face isnt even either but I have grown use to it now, only time it bugs me is in photos cause that can catch my eye at a different level.

Best of luck to your sister



Karen Brown said:
I don't have Bells Palsy and TN but interesting enough, my sister has had Bells Palsey on both sides of her face, about two years apart. She has drooping on both sides although one side is worse than the other. Her right eye waters constantly and she can't smile without it looking more like a grimace. I know that some people recover 100 percent but she's been told that her current condition is as good as it's ever going to get.

What about you, Shannon? Do you have lasting effects from the Bells palsy?
8

Bell’s Palsy was my initial (speculated) diagnosis from my dentist, ruling out my ‘toothache’.

My dermatologist, scanning my TN1 (actual) diagnosis; stated to me, with great empathy, that he suffered Bell’s Palsy some 25 years ago.

So, I just have to add, that it rang a ; ) bob

9


Shannon B said:
Hi Red, I was first diagnosed at the start of September 2010 with sharp shabbing pain into every tooth in my upper and lower jaw on my left had side, the pain started at night first with multiple short attacks during the night then progressed to during the day after a few nights and then I was having them all the time. My pain seems to be triggered by cold wind or breathing in cold air, I found relief with hot water bottle and no standard pain medication helped. I started Epelim 5 days after my first attack and didnt get any relief until I was 1000mg of Epelim. I have seen a neurologist and had a MRI which showed no compressions MS or tumours. He has changed me to Lyrica and I have just finished the change over and already had to increase my Lyrica intake to 50mg instead of 25mg.

At first I did think that it was another Bells palsy attack because I had some pain behind my ear which is what I would normally get with BP, I also had a cold sore the size of a small planet on my non TN side (right) 2 weeks before coming down with TN, the doctors put me straight on a Anti viral because it was the first one I had and it was extreme. The Neurologist is throwing around the idea that my Bells Palsy and TN are linked and that the cold sore virus (herpes simplex 1) which is the same trigger for bells palsy is having some effect on my nerve.

I think that pretty much covers it.

Thanks

I must apologize for not getting back to you sooner, Shannon. I had a multitude of "stuff" come up that I had to take care of, some of it family related. Then I managed to misplace the link to this posting. Some weeks a person can't win for losing.

A couple of thoughts surface for me in reading your narrative above. First, your presenting symptoms seem consistent with many reports of Trigeminal Neuralgia. The absence of an obvious nerve compression in MRI images does not eliminate TN as a candidate source in your facial pain.

Next, your prescription of Epilim (Topimirate, or Sodium Valproate?) tends to confirm that your doctor is indeed treating you off-label for some form of facial neuropathic pain. But 1000 mg per day is more than double the recommended maximum daily dose for seizure control. So I am still a little puzzled as to whether that's the drug you're actually on. See http://www.rxlist.com/topamax-drug.htm

Your doctor seems also to be treating you conservatively with the prescription of Lyrica. This med is often prescribed for fibromyealgia, though it is used often enough with a wide variety of facial neuropathic pain also. RXList.com has the following to say about medication dose for this med:

"The maximum recommended dose of LYRICA is 100 mg three times a day (300 mg/day) in patients with creatinine clearance of at least 60 mL/min. Begin dosing at 50 mg three times a day (150 mg/day). The dose may be increased to 300 mg/day within 1 week based on efficacy and tolerability. Because LYRICA is eliminated primarily by renal excretion, adjust the dose in patients with reduced renal function."

As for Bells Palsy and TN being linked... that one is a tough nut to crack. Has Herpes Simplex I been confirmed by lab cultures? Likewise, have you ever had Chicken Pox? Shingles, which is caused by the Chicken Pox latent virus in the nervous system, and also treated with the same anti-viral your doctor used, can cause post herpetic neuralgia, that has strongly overlapping symptoms similar to those of TN. For whatever this is worth, Neurontin is frequently effective in reducing pain caused by PHN (regardless of present controversy concerning Phyzer falsifying data in a drug trial directed to neuropathic pain).

If you want to read up on Bells, the following site looks like a good place to start: http://www.bellspalsy.ws/cause.htm

In a rather general sense, I can see a rough sort of logic behind your doctor's speculation on a possible link between HS-1 and both the facial neuralgia symptoms and facial paralysis of Bells. There is certainly some data out there which suggests that any condition of sustained facial neuropathic pain, in any of the 10 or 12 nerves that serve the face, can be associated with a vulnerability to other types or manifestations of neuropathy. But I must tell you in all candor, that I don't see much support in medical literature for such a link. In 15 years of reading this literature and talking with patients and doctors, I have never seen a case of TN that could be traced conclusively to HS-1. That isn't a proof, of course. It's just my research experience as a technically educated layman.

So how are you doing today with your overall pain profile, Shannon? Does the Lyrica seem to be helping?

Go in Peace and Power,
Red

PS: for your own safety, remember that my doctorate is in engineering, not medicine. Talk with your doc when you need to evaluate the input I've offered as a well meaning patient advicate.
10

Hi Red, no worry about the delay in getting back to me, Life is hectic here as well :slight_smile:



I am having a pain free day after coming of Lyrica and going back to epilim because I was having severe depression from it and I was only at 75mg a day. The epilim I am taking is Sodium Valproate but I can look into that further for you and let you know I have all the information at home and I am currently at work. He has also told me I can increase my dose to 1500mg if required.



The Herpes Simplex was confirmed recently by swap when i was put on the anti viral for that cold sore 2 weeks before my onset of TN. To be honest the TN pain and the Bells palsy feels very different now it has developed, my initial thought was the pain behind my ear was the same as BP pain but BP pain never effected any other area of my face.



I have had chicken pox as a child but no shingles at this stage. So given it is such a long tme since I had chicken pox would it be likely that it is post herpetic neuralgia??? I would have thought I would have been effected straight away.



Thanks so much for all your information I find it really interesting.

11

When the chicken pox virus gets done raising cane with your skin, it goes dormant in your nervous system for the rest of your life, Shannon. It can re-emerge at any time as a case of Shingles. In most cases, Shingles is signaled by a rash of some sort, but I’ve seen case reports where the inflamed areas are either initially or completely internal to the body. So yes, it’s possible to have Post Herpetic Neuralgia pain if the cranial nerves are inflamed by the re-emergence of active Herpes Zoster virus from its dormant state in the spinal column or nervous system. And you can have it more than once.

Do talk with your doc if you need further clarification on the implications. And ask him for an independent reference on the safety and effectiveness of 1500 milligrams a day of Topimirate. That’s a really high dose, and some of the material on RxList suggests that there are limited or no positive effects for levels that high. Your doc may have some other reason for trying you at that level, so let him inform you.

Go in Peace and Power,
Red

12

I had Bells Palsy on the TN side of my face also about 25 years ago…AND, my Great Grandmother had TN also.



Sharon Bryant said:

No you are not weird and I am glad to know now that I am not either! I had Bells Palsy about 25 years ago on the same side as my TN.

13

I had Bells Palsy about 10 years before I had TN but it is on the same side. Having said that, I am beginning to wonder if I had the beginnings of ATN before then?

14

I’ve never had BP, nor do I have any real knowledge of it personally, but I was speaking to Jimmy about this last night and reminded me of a conversation I had with someone many years ago, so I thought I would mention it to you.

Long before I ever came down with neuralgia, I remember speaking to a woman who had a lot of BP in the family, and she had said that what had been recommended to them and what they had found to be really beneficial was additional stimulus to the face. Now this may be completely useless to mention, especially if you are suffering from the BP on the same side as the TN, but if it is not on the same side this may be worth considering.

What they had found useful in their recovery was using either an electric razor/vibrator over the affected side of the face, for extended periods of time throughout the day.
The reasoning being was that if the area was being stimulated sufficiently by the vibrations thereby increasing blood flow etc that it could improve muscle and nerve function/speed up the recovery etc.

I have no experience of this personally like I say, and it may be an old wives tale, but I thought I would mention it to you none the less.

Much love

Gracie x x x

15

There really seems to be a link between Bells Palsy and TN…I had all the horrid TN stabbing burning electric shocks…you name it…the pains began with toothpain, tongue pain, ear pain, cheek pain, and finally after replacing all my molars, (my dentist told me the pain was from my fillings), I had the big pain, waking up every 10 minutes all night long, well not waking up, can’t sleep after the initial attack, electric shocks with absolutely NO easing the pain, I went back to the dentist early the following morning and told the office that he must have installed my crowns wrong, HE wasn’t there, but his new associate, just out of dental school looked at me, did yet another x-ray, ran and retrieved her dental school text, and on the opening page where they are educated on specific medical conditions that represented as a dental problem, was TN…she immediatedly called my MD, who in turn sent me to a Neurologist, MRI’s, etc…I was started on Fentynal, Vicadin, Tegretol and Lyrica…for 3 months…then taken off the Fentynal, …I tried accupuncture, laser treatments, massage, nothing stopped the onset of the BIG one…until I had Gamma Knife…which stopped the big one, but presented a whole new bunch of problems…but still better than having the BIG one ! Sorry for rambling on, Also I did find a temporary fix for the oral and cheek pains- I asked my Neuro to give me a saline solution lidocaine spray, 4 % and later 8%, I would squirt in my mouth, swish on the bad side and spit out, and I would spray in my nose, and instant numbing. great for sleep at night, this spray was originally prescribed for cluster headaches and was to be used nasally…AND IT WORKS, you need to find a compounding pharmacist…I went to Barrows for my GK, and before the procedure, I asked for the viscous lidocaine , which is used orally for mouth problems , and the staff was puzzled, and now they know that this is a temp fix , just to get by ! ANd I just discovered the Viscous Lidocaine, (I had been using the saline to squirt in my mouth and the taste is nasty, but it worked !)… I still use the lidocanine even after GK, hope this helps someone, and answers some questions !

16

Thanks for your input, Gracie.



Cathy Hampton said:

There really seems to be a link between Bells Palsy and TN…I had all the horrid TN stabbing burning electric shocks…you name it…the pains began with toothpain, tongue pain, ear pain, cheek pain, and finally after replacing all my molars, (my dentist told me the pain was from my fillings), I had the big pain, waking up every 10 minutes all night long, well not waking up, can’t sleep after the initial attack, electric shocks with absolutely NO easing the pain, I went back to the dentist early the following morning and told the office that he must have installed my crowns wrong, HE wasn’t there, but his new associate, just out of dental school looked at me, did yet another x-ray, ran and retrieved her dental school text, and on the opening page where they are educated on specific medical conditions that represented as a dental problem, was TN…she immediatedly called my MD, who in turn sent me to a Neurologist, MRI’s, etc…I was started on Fentynal, Vicadin, Tegretol and Lyrica…for 3 months…then taken off the Fentynal, …I tried accupuncture, laser treatments, massage, nothing stopped the onset of the BIG one…until I had Gamma Knife…which stopped the big one, but presented a whole new bunch of problems…but still better than having the BIG one ! Sorry for rambling on, Also I did find a temporary fix for the oral and cheek pains- I asked my Neuro to give me a saline solution lidocaine spray, 4 % and later 8%, I would squirt in my mouth, swish on the bad side and spit out, and I would spray in my nose, and instant numbing. great for sleep at night, this spray was originally prescribed for cluster headaches and was to be used nasally…AND IT WORKS, you need to find a compounding pharmacist…I went to Barrows for my GK, and before the procedure, I asked for the viscous lidocaine , which is used orally for mouth problems , and the staff was puzzled, and now they know that this is a temp fix , just to get by ! ANd I just discovered the Viscous Lidocaine, (I had been using the saline to squirt in my mouth and the taste is nasty, but it worked !)… I still use the lidocanine even after GK, hope this helps someone, and answers some questions !

17

I had a bout of Bells Palsy on the left hand side of my face when I was in my mid 20’s. My TN pain is on the right hand side for the most part with the occasional twinge and burning on the left hand side.

Initially all the pain that drove me to the docs in the first place was on the left hand side. I dot know if this is coincidence or if there is some connection to it all.

18

I am so glad to have found this thread! I have always suspected that my ATN was caused by my bell's palsy....I had bell's about 4 years ago and after the muscle movement came back (3 months) I had a constant tic in my face...just a gentle pulling of the facial muscles- nothing too noticeable to anyone but me. About a year later I began having terrible facial pain on the same side and was diagnosed with TN.

19

Interesting discussion for me. While I never had Bells Palsy, my 11-year-old daughter had it. Makes me wonder also if there's a family connection, genetic or otherwise.

20

Vascular and structural characteristics tend to be shared among close blood relatives. So there is at least plausible relationship between Bells Palsy and TN -- as one of several causes of TN, and most probably not one of the more common.

Regards and best, Red