Facial Pain and Tension

[Sen]

Does anyone else get facial pain and facial tension/numbness as a symptom?

I get it almost exclusively on my right side in the cheekbone and temple area, though sometimes I get transient burning pain on the left side too. So far the only thing that helps it for me are benzodiazepines, which make me very depressed, forgetful and sometimes angry as a side effect (although quite helpful with anxiety.)

I tried lyrica for a while but it didn't really help and gave me horrible mood swings with hypomania. My neurotologist decided it was best to discontinue.

Now I am at a loss. This symptom is as bad as the ear pain. It is very difficult to manage, and becomes more and more prevalent as I taper off lorazepam.

 

[Ken219]

'lorazepam.' what dose are you tapering off? If you do it too much I think you'll have problems. I believe you need to get your mind straight? Not a doctor

 

[Sen]

0.5mg three times a day (1.5mg each day total) is what I've been taking for the past 2 months. I have been cutting by 0.25mg each week.

I've tapered from benzos before but I've always done it with a valium crossover. This is my first time with a direct taper.

 

[Ken219]

0.5mg three times a day (1.5mg each day total) is what I've been taking for the past 2 months. I have been cutting by 0.25mg each week.

I've tapered from benzos before but I've always done it with a valium crossover. This is my first time with a direct taper.

Hang in there. Good luck and god bless.

 

[Sen]

thank you

 

[Mr. Cartman]

Does anyone else get facial pain and facial tension/numbness as a symptom?

I get it almost exclusively on my right side in the cheekbone and temple area, though sometimes I get transient burning pain on the left side too. So far the only thing that helps it for me are benzodiazepines, which make me very depressed, forgetful and sometimes angry as a side effect (although quite helpful with anxiety.)

I tried lyrica for a while but it didn't really help and gave me horrible mood swings with hypomania. My neurotologist decided it was best to discontinue.

Now I am at a loss. This symptom is as bad as the ear pain. It is very difficult to manage, and becomes more and more prevalent as I taper off lorazepam.

Hi, just wanted to say that yes, ive had that quite a lot in the past.
I do believe that a lot of this pain is caused by the trigeminal nerve(s).

For some reason (I have read it once, and cant find much more information on the topic), but the tensor tympani muscle that is attached to your tympanic membrane has the ability to irritate the trigeminal nerve(s) as they are somehow connected.
So my guess is that if the tensor tympani muscles are straining to protect your ears (like if you are constantly on guard for sounds, or have some degree of hyperacusis, then this muscle is working too much or almost all the time, and it is sometimes refered to as TTTS (Tonic Tensor Tympani Syndrome), which for me seems to be mostly psychological related.

I also believe that strain to your neck, shoulders or head/scalp also have the ability to cause those symptoms by irritating the trigeminal nerves.

I have found stretching and massaging to eliminate most of the pain, and also my T. Im in the early stages of trying this stuff out, and so far it seems to do wonders.

I stretch my subocciptal muscles, mastoids and the muscles that are going from my neck and out to my shoulders, mostly those located slightly at the front of my neck and shoulders. It seems to work, at least for me. I also have some dangerously tender spots where my mastoids seems to be connected to the bone at my lower part of my throat (kinda under the the chest bone).

If you have the time, I would really recommend reading through this thread:
https://www.tinnitustalk.com/thread...-pain-facial-pain-etc-possible-treatment.500/

Best whishes

 

[Street Spirit]

I get a little depressed from clonazepam too, however I only take .5 as needed. .a couple times a week..

if its helping with your h and pain, maybe dont taper...the side effects may lessen with more time..or else try clonazepam. I wasnt aware another benzo had pain relieving properties. .clonazepam is good..ativan made me crazy so not all benzos affect you the same..

I agree with cartman and lot of people jave had facial pain and numbness including me which has largely subsided.

Anxiety worsens TTS imo, but sometimes just plain nosie sets it off.

 

[Sen]

thanks for the responses, lynn and mr. cartman. i've considered talking to my doctor about switching to clonazepam. the thought of taking a benzodiazepine indefinitely makes me nervous because i've gone down that road before, long before T and H, and it was an extremely unpleasant experience. it makes me feel like a failure having to go back on benzos after so many years of being benzo free.

I'm happy to hear that these symptoms have improved for you, lynn. my facial pain and numbness have only worsened. i didn't have it in the beginning, but it appeared almost immediately after i accidentally slammed a door very hard next to my ear, which was over a year ago now, and has been worsening since then.

 

[Street Spirit]

Thanks Matt. Mine has come and gone since this all started but the numbness never bothered me since I was already having TN symptoms before h and t. I also had bad facial pain (TN) that clonazepam thankfully toook care of.

I wouldnt think longterm right now. I think the main thing is to first try and get your pain under control while treating your anxiety. Stress and anxiety make every condition worse.

I would definitely speak with your doc about clonaz. I am not the only one with h, t, TN pain or facial and ear pain to find it rather successful.

 

[Street Spirit]

I forgot to mention, a friend told me that he uses lidocaine patches and they work well.

 

[lapidus]

I forgot to mention, a friend told me that he uses lidocaine patches and they work well.

Isnt there a clinical study going on right now testing lidocaine patches for T? I didnt know that those things already existed on the market. Do they help with H?

 

[Street Spirit]

@lapidus
No, the lidocaine patches is in regard to the facial pain.

 

[Suzie]

Does anyone else get facial pain and facial tension/numbness as a symptom?

I get it almost exclusively on my right side in the cheekbone and temple area, though sometimes I get transient burning pain on the left side too. So far the only thing that helps it for me are benzodiazepines, which make me very depressed, forgetful and sometimes angry as a side effect (although quite helpful with anxiety.)

I tried lyrica for a while but it didn't really help and gave me horrible mood swings with hypomania. My neurotologist decided it was best to discontinue.

Now I am at a loss. This symptom is as bad as the ear pain. It is very difficult to manage, and becomes more and more prevalent as I taper off lorazepam.

Does anyone else get facial pain and facial tension/numbness as a symptom?

I get it almost exclusively on my right side in the cheekbone and temple area, though sometimes I get transient burning pain on the left side too. So far the only thing that helps it for me are benzodiazepines, which make me very depressed, forgetful and sometimes angry as a side effect (although quite helpful with anxiety.)

I tried lyrica for a while but it didn't really help and gave me horrible mood swings with hypomania. My neurotologist decided it was best to discontinue.

Now I am at a loss. This symptom is as bad as the ear pain. It is very difficult to manage, and becomes more and more prevalent as I taper off lorazepam.

Matt
I had right side facial pain that was excruciating for 1 day and then it subsided a bit but still painful. 3 days later I got the ringing in my ear. Between the both of them I thought I wouldn't survive. I went to so many doctors until I got answers: I have tinnitus and trigeminal neuralgia. I am on gabapentin, 300 2x a day. This has calmed it down. I have 'habituated' with my tinnitus, just as the success stories on this forum have attested. I don't know what I would have done without the success stories to get me thru the day. They all said it gets better and they were right. My neurologist prescribed the gabapentin so you may want to see one......

 

[Sen]

I've tried both gabapentin and pregabalin. Neither improved my symptoms, and both had extremely uncomfortable side effects.

 

[yonkapin]

I've tried both gabapentin and pregabalin. Neither improved my symptoms, and both had extremely uncomfortable side effects.

What's up buddy, same matt from the Rogan boards right??

Sucks to hear you're still not doing any better, out of curiosity have any of the doctors tried you on some sort of anti-inflammatory steroid?

They're not designed for long term use, and there's potential side effects and all that other business. However I know my ex-girlfriend, who has Crohns disease, is able to take some for many months at a time to deal with her issues, albeit it's a low dose but it keeps her pain and other symptoms well in control. Given that your symptoms have been so severe, it could maybe give you some sort of relief.

The reason I bring it up is that I've been on Prednisolone about 3 times now since getting tinnitus and hyperacusis/TTTS, and each time I've experienced great benefits. My hyperacusis becomes basically non-existent, my ear and jaw pain disappear, and my tinnitus lowers from about a 8/10 on average to 1/10.

Anyway, I know you've gone through some shit so it might be worth giving it a go, even if it just provides you temporary relief.

 

[Mr. Cartman]

Matt
I had right side facial pain that was excruciating for 1 day and then it subsided a bit but still painful. 3 days later I got the ringing in my ear. Between the both of them I thought I wouldn't survive. I went to so many doctors until I got answers: I have tinnitus and trigeminal neuralgia. I am on gabapentin, 300 2x a day. This has calmed it down. I have 'habituated' with my tinnitus, just as the success stories on this forum have attested. I don't know what I would have done without the success stories to get me thru the day. They all said it gets better and they were right. My neurologist prescribed the gabapentin so you may want to see one......

Hi

Im just curious, did the doctors figure out where your trigeminal nerve is affected? Like did they find a blood vessel that had looped around your trigeminal nerve or anything else that could triggered it?

What I find kind of interesting is that I read that the facial nerve is responsible for the stapedius reflex which I also believe is capable of trigger tinnitus.

 

[Golly]

Isnt there a clinical study going on right now testing lidocaine patches for T? I didnt know that those things already existed on the market. Do they help with H?

I tried lidocaine patches because there appears to be a relationship between my tinnitus and the tension in my neck/back/face. They did not help with my tinnitus.

-G

 

[Sen]

What's up buddy, same matt from the Rogan boards right??

Sucks to hear you're still not doing any better, out of curiosity have any of the doctors tried you on some sort of anti-inflammatory steroid?

Yeah, that's me. Small world I guess.

I haven't tried any anti-inflammatory steroid. I could definitely ask my doctor about it, but like most remedies, I'm pretty skeptical.

I just wish there was a way to take benzodiazepines and have them remain effective in the long term. Benzos ease all of my symptoms somewhat, and almost completely eliminate the facial tension and pain.

 

[here2help]

@Sen, I have been thinking about the symptoms you experience with facial pain and numbness. If I'm following the sequence of events, these symptoms began when you accidentally slammed a door and the sound was very loud.

It may be that exposure to the loud sound was one factor among others that contributed to re-setting your auditory system at the synaptical level. If this is the case, then it is very possible to restore these settings back to normal with slow and deliberate sound exposure techniques, sometimes coupled with cognitive therapy. I don't think antianxiety medication or anti-inflammatory medication is the way to go here, at least not as a long-term approach.

Since that slammed door, have you noticed anything in particular that causes your facial pain and numbness? Are these symptoms activated by sound exposure or by the anticipation of loud sound? What would a typical week be like for you when you leave home? In your waking hours, how much time do you spend in a pretty quiet place?

The stapedial reflex refers to the contraction of the stapedius muscle in response to loud sound, like a slammed door. This reflex can also be triggered by the expectation of exposure to a loud sound. Our emotional responses to sound and any beliefs we develop about sound can also have an impact. There may be a connection between the contraction of this muscle and your symptoms.

here2help

 

[Sen]

I'm aware of the alleged benefits of sound enrichment in the treatment of hyperacusis. I enrich myself in some sound almost 24/7. I used to use in-ear white noise generators that my audiologist provided me, but those have since become too painful, not so much from the noise they make (which causes problems too), but the actual physical presence of the devices causes sharp pains deep in my ear canals where the speakers rest. I have this same issue wearing ear plugs (which worsen ear pain) or ear muffs (which worsen facial pain), but I can tolerate wearing hearing protection for 1-2 hours before pain begins, so I do so when it is necessary.

Now I have my window open all the time, listening to the birds and wind and cars driving on the highway in the distance. If the noise outside becomes painful, I will close the window and use sound enrichment indoors at a more tolerable volume. I also try to regularly follow Jastreboff's music protocol for misophonia. Sometimes it is too painful to do the latter, as I find music, especially music with a wide dynamic range, to be quite abrasive and pain inducing. I also see an occupational pain therapist every two weeks.

I have been doing most of these things for the better part of two years and have experienced no meaningful or lasting improvement. I have actually worsened since the beginning. My LDL's in October of 2012 were in the 70 to 80 range, but by Summer of 2013 they had decreased to the 50's and 60's. I am not certain where they are at the moment.

The facial pain, tension, and numbness happens 24/7, whether or not there is sound or whether or not I am anticipating sound. I haven't noticed it increase or decrease significantly based on my sound environment other than from the noise that preceded its initial appearance. I had hyperacusis with ear pain and tinnitus before this incident.

In addition to these symptoms, I experience spinning and rocking vertigo that virtually always occurs alongside the appearance of a rapidly clicking "wheel of fortune"-esque tinnitus tone. This will happen whether or not I'm exposed to noise. It will happen when I am perfectly relaxed and enjoying myself in a non-threatening sound environment.

I can actually voluntarily tense the muscles in my middle ear, which causes a rumbling sound and feeling of tension in my ears. I demonstrated this to my neurotologist and he confirmed that it was my tensor tympani and stapedius muscles. When I do this, there is no associated pain or dizziness.

 

[Street Spirit]

Matt, have you seen a Neurologist?

 

[Sen]

Matt, have you seen a Neurologist?

I've seen a neurotologist; allegedly a very good one. I feel like if my doctors felt like I needed to see a neurologist they would have referred me to one.

 

[Sen]

As I taper from lorazepam I am beginning to experience crushing headaches that last the entire day almost every day.

 

[Street Spirit]

Are your doctors aware of ALL your symptoms? Did you give gaba and pregabalin a good go before ceasing to see if they would help? Another good med to try would be amitriptyline. You only took your benzos for 2 months and they helped you a great deal, why are you stopping them?

I still personally think that judging by your posts you have more going on then just T and H. Maybe untreated TMJD? I know you tried treating it in the past but maybe you need a better dentist to help you...Have you had an MRI? People with tmj have a hard time wearing plugs or muffs due to pressure put on your jaw joint. TMJ can cause TN pain, facial pain, numbness etc...Many other people without TMJD have pain after wearing plugs. It is not uncommon.

It is quite clear you have an irritated trigeminal nerve and you need relief...I really don't understand why your docs wouldn't send you to a Neurologist. However medicine is how they will treat it. .Clonzepam specifically is used to treat TN as well.

 

[Sen]

Yes, I wrote a very detailed letter to my doctors about all of my symptoms.

I stayed on pregabalin for about 10 days and it triggered what I would describe as a manic episode. I could not handle it mentally. Gabapentin wasn't quite so bad from what I can remember, but it increased my dizziness and did not improve any symptoms.

I want to stop taking benzos because they are not indicated for long term use. I took benzos for 4 years straight every day in a previous life when I didn't have health issues. They eventually stopped working entirely and I began to experience something called "tolerance withdrawal." Following that, I struggled immensely when I had to taper off of them. I was sick for a very long time with protracted withdrawal symptoms. I do not wish to repeat that experience with my current health issues compounding it.

I agree that I have more going on than just T and H, but whatever it is remains a mystery. I have never received a sensible diagnosis. I have done a ton of research about TMJD and the science behind its treatment is sketchy at best. My neurotologist agrees. Moreover, I live in a semi-remote area of Canada and cannot easily travel, nor do I have thousands of dollars to afford TMJD treatment in another province/country that hasn't been demonstrated to actually work. I have very little money at all, actually, barely enough to get by day to day.

It's an unfortunate situation, I'll admit. I feel like the world has thrown me to the wolves.

 

[Street Spirit]

I have done a ton of research about TMJD and the science behind its treatment is sketchy at best. My neurotologist agrees.

I agree somewhat. Treatment for TMJD is hard to come by, BUT people do see improvements if not almost complete relief of pain and symptoms through various methods. I would not discount it simply because your Neurotologist feels it's "sketchy" How much can a Neurotologist even know about the TMJ? it's not exactly their area of expertise, though due to it's proximity to the ear/nerves etc, I am sure they know something I suppose...

Some treatment is covered under OHIP, like botox or steroid injections and PT. Though wait time is long, I've been waiting since last Fall!

Your past benzo experience does sound poor, that is too bad. I would again suggest amitrip. It is often prescribed for H, T, and nerve pain. I still think you would benefit from a Neuro visit. I am still awaiting mine. Should be this summer.

Yes, battling pain and ear issues is horrific. There is not one day that goes by that I do not suffer, though I still carry on, and work at trying to get better. We are young, there is still hope.

Hang in there.

 

[lapidus]

Yes, hang in there Matt. Me and Lynn are in the same boat as you. One day we shall be able to listen to Aphex Twin at full blast again

 

[alifalijohn]

I'm aware of the alleged benefits of sound enrichment in the treatment of hyperacusis. I enrich myself in some sound almost 24/7. I used to use in-ear white noise generators that my audiologist provided me, but those have since become too painful, not so much from the noise they make (which causes problems too), but the actual physical presence of the devices causes sharp pains deep in my ear canals where the speakers rest. I have this same issue wearing ear plugs (which worsen ear pain) or ear muffs (which worsen facial pain), but I can tolerate wearing hearing protection for 1-2 hours before pain begins, so I do so when it is necessary.

Now I have my window open all the time, listening to the birds and wind and cars driving on the highway in the distance. If the noise outside becomes painful, I will close the window and use sound enrichment indoors at a more tolerable volume. I also try to regularly follow Jastreboff's music protocol for misophonia. Sometimes it is too painful to do the latter, as I find music, especially music with a wide dynamic range, to be quite abrasive and pain inducing. I also see an occupational pain therapist every two weeks.

I have been doing most of these things for the better part of two years and have experienced no meaningful or lasting improvement. I have actually worsened since the beginning. My LDL's in October of 2012 were in the 70 to 80 range, but by Summer of 2013 they had decreased to the 50's and 60's. I am not certain where they are at the moment.

The facial pain, tension, and numbness happens 24/7, whether or not there is sound or whether or not I am anticipating sound. I haven't noticed it increase or decrease significantly based on my sound environment other than from the noise that preceded its initial appearance. I had hyperacusis with ear pain and tinnitus before this incident.

In addition to these symptoms, I experience spinning and rocking vertigo that virtually always occurs alongside the appearance of a rapidly clicking "wheel of fortune"-esque tinnitus tone. This will happen whether or not I'm exposed to noise. It will happen when I am perfectly relaxed and enjoying myself in a non-threatening sound environment.

I can actually voluntarily tense the muscles in my middle ear, which causes a rumbling sound and feeling of tension in my ears. I demonstrated this to my neurotologist and he confirmed that it was my tensor tympani and stapedius muscles. When I do this, there is no associated pain or dizziness.

Hello Matt, I have T almost 3 month now, I also have dizziness with it, done all the test, everything came back fine, lately , I find my ears hurt from talking, listening to people , I hope this goes away, because it is uncomfortable.
I am going for Achupuncture for my dizzynes next week , hope this works. My dizzynes was there few months before my T started...will let you know if the dizziness stopped from the Achupuncture.. I hope it works!! you hang in there.GOD BLESS

 

[Street Spirit]

@lapidus how are you doing?

 

[lapidus]

@lapidus how are you doing?

Not good, but I'm holding up. Finally got to see the audiologist I've been waiting 3 months to see. Well what do you know, she was completely useless. When I asked her to lower her voice she refused because she stated that I have to endure the pain in order to get better. She meant that the only way to treat me was if I started to live like I lived before H. That just seems dangerous to me. Good thing I brought my ear muffs so I put them on during our conversation. She also got mad at me when I brought up the latest research . I also asked her about the procedure Dr. Silverstein has come up with and before I even had explained what it was she said that there comes new surgical procedures for T and H all the time and none of them works and will never work. That's just not true. There has never been any surgical procedures done to treat H nor T, if you don't count cutting the auditory nerve. Shows just how much she knows.

Hope you're doing better Lynnie.