Multiple Sclerosis (MS) Support Group

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What would you do?

MsBabs
MsBabs
I was diagnosed in 2007 and was fortunate to find a neurologist that I really like. My MS is very mild (no flares since '07) so it's rare for me to call his office and need help from the nurse. However, 2 days ago I started experiencing incredible pain in my ear. It was bad enough to wake me up several times that night and yesterday morning the paiin continued plus I noticed that my scalp was very sensitive (just combing my hair brought on the pain in/around my ear. The pain felt like an electrified ice pick was stabbing me in the ear. Quick flashes of pain that made me gasp every time.

I monitored the pain yesterday morning. In one hour I felt the "stab" 11 times and nothing I did/didn't do changed the pain. So I called my neuro's office before 11 a.m. and left a message for the nurse, describing the very bad pain in my ear and scalp.

I know nurses are very busy and I have so much respect for the work they do. But I'm so disappointed that it's been more than 24 hours and I haven't heard from anyone. I assume the pain is trigeminal neuralgia, and it has eased up a bit, so I'm not too concerned anymore, but still!!! I thought my message stating I was in pain would put me a little higher on the call-back list. It makes me wonder what will happen when/if I ever have a more serious problem.

This has me thinking that I might need to find a new neuro. What would you do? (Experiences with trigeminal neuralgia would be nice to hear about too!)
deleted_user
deleted_user
Hi, if it were me, I would tell my neuro what happened and that I did not get a return call. I would ask him what to do if this ever happens again. It would depend on his response. It is really hard to find good neuro. If you tell him and it happens again, I would look around, just my opinion. I don't have experience with trigeminal neuralgia.
lorrieonline
lorrieonline
If there's been an entire day without a call back, I would just call back again and speak with someone for sure. And if it's the case that the office staff is not on the ball, the doctor needs to know. I've never had trigeminal neuralgia.
marilyn4342
marilyn4342
Indeed call back, and also let your Neuro know! The nerve pain, my sister had Cyber Knife today for the pain. Will let you know how she does. Like you no flare ups in years!
MsBabs
MsBabs
Thanks everyone. I didn't hear from het yesterday so I do plan to call back on Monday. Luckily the Pain has nearly stopped completely. Just an occasional random ice pick in the ear type of pain a couple times a day. No fun but bearable.

Good luck to your sister Marilyn. I'd love to hear how it goes and if it eases her pain.
tiredbunni
tiredbunni
I was dx with occipital neuralgia with has to do with a knife stabbing pain in forehead that runs down the middle of scalp. I never had ear pain with it. Of course I was dx with this way before MS. I also have TMJ with ear pain but not what you described. I also experienced TN but didn't know what it was as this was before MS but not ice pick pain.

I have experienced ice pick stabbing pain in ear. I told my neurologist about it in is office and he looked at me like I had two heads. He said he didn't know what it was about... and I already had my MS dx. He never said anything about TN. I still get on and off episodes of the ice pick pain. I know holding a phone against my ear too long with trigger it. It also just appears upon awaking and ears are red and then pain. Did some research about this type of pain... similar to TN but different nerve being affected and rarer.

Geniculate neuralgia results in severe, deep ear pain which is usually sharpoften described as an "ice pick in the ear"but may also be dull and burning. Ear pain can also be accompanied by facial pain. I read what others said about it and it's exactly what I've gone through. Now I have a name for it. I'm so tired of doctors/neurologist treating me like it's still all in my head.

Hopes this helps :)
alitax86
alitax86
Talk to your doctor to find out why no one contacted you. If not satisfied with the answer, find another neurologist. I have a health plan that offers nursing advice 24/7. I have used the service to check if I should "wait and see" or if something needs immediate attention. There may be other services available outside of your health plan that will do this.
MsBabs
MsBabs
Just to follow up...the nurse finally called me on the Tuesday after I left her a message. 4 whole business days later! After we discussed the pain, which was entirely gone by that time, I asked her if there was another way I could reach her since it took that long to hear back. She said they're working on improving their messaging system and they'd had a lot of calls lately.

Here's the kicker--my neuro just called me! At this point all he could say was that it sounded like nerve irritation and if it had persisted he would've treated it with a burst of prednisone. I'm really not sure why he bothered to call me at this point. He did a knowledge that he should've called me sooner.
MsBabs
MsBabs
Oh, and thanks for the replies! I hadn't heard of geniculate neuralgia. I'll have to look into that some more. And my insurance also has a nurse line that I could've called, but I completely forgot about it. I'll have to remember that in the future -- it would've made me feel better to talk to someone while the Pain was happening.
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