ATN and Muscle Spasms-worst thing yet

Hello everyone,

So, I have had a pretty good couple of months after having a pretty bad couple of months. On 60mgs Amitriptyline which is keeping things somewhat under control. I have been getting increasing breakthrough pain. It is now happening on a daily basis.

I have noticed that my ATN is coming in isolated "flare ups". Before it would set in for the day. Last night for instance I had the good old original left side molar, jaw and ear pain for about two hours. Came on quick and was the first full blown attack I have had in months. Made me feel really shitty. Like here we go again right?


Now for the muscle spasms. I have been getting wee wee tiny little ones on my temple, under my eye or under my lip for a few months. Since last Friday I have been getting them under my left eye every day. I can see them-the twitching and blinking. Last night I experienced something way worse. Above and on the outside of my left eye very severe muscle spasms say for 10 seconds. Then off for 30 seconds and on for 10 again. I can see it in the mirror and feel it if I put my hand over it. Freaked me right out. After an hour I went to bed and so far this morning they are not there. That is usual for me though. My eye is twitching a bit already and things seem to get worse as the day goes on.

Who else gets these? Did they go away on their own? or did they get worse?

And for the first time I am noticing a wee bit of swelling around my eye. My mom told me yesterday that it looked like I had a rash on the side of my face. I guess it did look a little flushed on that side. Do any of you get swelling with your TN? Or a rash?

I am fairly freaked out by these new symptoms and could use some feedback please. I am really hoping the eyebrow thing doesn't happen again tonight. Is it a cause for concern? Like should I go to the hospital if it keeps happening? Is there any medication or creams that can help with it?

Thanks all

You might be experiencing something like a hemifacial spasm which could suggest 7th nerve involvement. Better keep track and report to doctor. It’s a good idea to video your spasms.

That's a good idea to video tape it. I was reading about hemifacial spasm...I hope that it just goes away

Hi JustJane, for 5 years I have dealt with the spasms with pain in my eye. I just found out last year that I had TN, and they never acknowledged my spasms. They began at the corner of my eye and have not today turned into full blown facial spasms that pull my entire face from the middle of forehead to my chin, it is pain and they last 4 1/2 minutes and come nearly continuously. These are also caused by an artery looped around a nerve. It is extremely rare for a person to have both. I just met with a Neurosurgeon yesterday and he was able to get me scheduled for surgery this Monday. I have had no luck with any of they usual meds, botox, or other typical treatments help me. I hope this helps, and I understand the feeling of what the heck is this and why! They video “Ask the Doctor” by Ken Casey is A WEALTH of information and I highly recommend watching it. Best of wellness to you!

Hi - you can put the words "swelling" , "spasms" and / or

"rash" in the search box above

Easiest way to find the Dr. Ken Casey video

is

google:

The Tides of Neuropathic Pain

and here is a companion site from the facial pain association - like this site - but wealth of information

www.fpa-support.org

Mamee:

What you have went through is horrible. So is your TN pain generally from the spasms themselves? Like do you have other Type 1 or Type 2 TN symptoms as well as the spasms and the pain from them? I do not want to sound like I am diminishing or classifying your symptoms in any way. The reason I ask is simply to identify with your symptoms.

I have Type 2 and have been told surgery is not an option so I am very curious how this symptom might change that?

Not to jump ahead...a few days with these spasms could be related to stress I guess or just a freak one time thing. Although I don't think that would happen to a normal stressed out person. Lol.

I have watched the video and am trying to navigate my way through this ordeal. There is so much conflicting information and beliefs.

I know there are other people on here with severe muscle spasms...I have seen their posts and even a couple of videos.

The "twitching" that I experienced above my eye brow was like nothing I have ever felt before. It was a whole huge area twitching, twisting, pulsating and dancing around. A pulling sensation for sure. I get a very faint pulling sensation on my temple often. That has been happening for a few months.

Only a few months ago I had ATN in the second and third branch on the left. Three months ago it became bilateral and shortly after that I have started having symptoms in the first branch. I am frightened of the progression.

I am very happy for you that you are having MVD surgery. And so soon. Please keep me updated and let me know how your recovery is going. You will be in my thoughts.

Thanks,

Jane

Mamee said:

Hi JustJane, for 5 years I have dealt with the spasms with pain in my eye. I just found out last year that I had TN, and they never acknowledged my spasms. They began at the corner of my eye and have not today turned into full blown facial spasms that pull my entire face from the middle of forehead to my chin, it is pain and they last 4 1/2 minutes and come nearly continuously. These are also caused by an artery looped around a nerve. It is extremely rare for a person to have both. I just met with a Neurosurgeon yesterday and he was able to get me scheduled for surgery this Monday. I have had no luck with any of they usual meds, botox, or other typical treatments help me. I hope this helps, and I understand the feeling of what the heck is this and why! They video "Ask the Doctor" by Ken Casey is A WEALTH of information and I highly recommend watching it. Best of wellness to you!

Hi KC,

I will search through the forums. I have watched the video and learnt a lot from it. I will check out the link as well.

Thanks :)

Kc Dancer Kc said:

Hi - you can put the words "swelling" , "spasms" and / or

"rash" in the search box above

Easiest way to find the Dr. Ken Casey video

is

google:

The Tides of Neuropathic Pain

and here is a companion site from the facial pain association - like this site - but wealth of information

www.fpa-support.org

Yes, I will let you know Jane, I have two nerves to be decompressed nerve 5 & 7, with exploratory. I will update on how the surgery has helped me. I am believing, this will knock out all that dealt with give me my life back.



justjane37 said:

Mamee:

What you have went through is horrible. So is your TN pain generally from the spasms themselves? Like do you have other Type 1 or Type 2 TN symptoms as well as the spasms and the pain from them? I do not want to sound like I am diminishing or classifying your symptoms in any way. The reason I ask is simply to identify with your symptoms.

I have Type 2 and have been told surgery is not an option so I am very curious how this symptom might change that?

Not to jump ahead…a few days with these spasms could be related to stress I guess or just a freak one time thing. Although I don’t think that would happen to a normal stressed out person. Lol.

I have watched the video and am trying to navigate my way through this ordeal. There is so much conflicting information and beliefs.

I know there are other people on here with severe muscle spasms…I have seen their posts and even a couple of videos.

The “twitching” that I experienced above my eye brow was like nothing I have ever felt before. It was a whole huge area twitching, twisting, pulsating and dancing around. A pulling sensation for sure. I get a very faint pulling sensation on my temple often. That has been happening for a few months.

Only a few months ago I had ATN in the second and third branch on the left. Three months ago it became bilateral and shortly after that I have started having symptoms in the first branch. I am frightened of the progression.

I am very happy for you that you are having MVD surgery. And so soon. Please keep me updated and let me know how your recovery is going. You will be in my thoughts.

Thanks,

Jane

Mamee said:

Hi JustJane, for 5 years I have dealt with the spasms with pain in my eye. I just found out last year that I had TN, and they never acknowledged my spasms. They began at the corner of my eye and have not today turned into full blown facial spasms that pull my entire face from the middle of forehead to my chin, it is pain and they last 4 1/2 minutes and come nearly continuously. These are also caused by an artery looped around a nerve. It is extremely rare for a person to have both. I just met with a Neurosurgeon yesterday and he was able to get me scheduled for surgery this Monday. I have had no luck with any of they usual meds, botox, or other typical treatments help me. I hope this helps, and I understand the feeling of what the heck is this and why! They video “Ask the Doctor” by Ken Casey is A WEALTH of information and I highly recommend watching it. Best of wellness to you!

Hi Jane, I am 5 days out post surgery and all went well, I was a very rare case of TN and Hemifacial Spasms having two seperate arteries on two different nerves, surgery went really well and recovery is no worse than the pain most all of us experience. If it’s an option for you, its worth considering. Well wishes to you!



Mamee said:

Hi JustJane, for 5 years I have dealt with the spasms with pain in my eye. I just found out last year that I had TN, and they never acknowledged my spasms. They began at the corner of my eye and have not today turned into full blown facial spasms that pull my entire face from the middle of forehead to my chin, it is pain and they last 4 1/2 minutes and come nearly continuously. These are also caused by an artery looped around a nerve. It is extremely rare for a person to have both. I just met with a Neurosurgeon yesterday and he was able to get me scheduled for surgery this Monday. I have had no luck with any of they usual meds, botox, or other typical treatments help me. I hope this helps, and I understand the feeling of what the heck is this and why! They video “Ask the Doctor” by Ken Casey is A WEALTH of information and I highly recommend watching it. Best of wellness to you!