I am having facial pain on my right side running from my neck to behind my ear. Now it is leaving the right side of my face tingly. It appears to be worse with movement. I have been to my primary physician to rule out stroke, ear infection, or any carotid problem. They suggested I take my Neurontin, which I did. It has made me sleepy but the symptoms are still there. Is there anything i can do or medicine I can take? When I lie down it subsides, but the tingling continues. The pain comes and goes, but it is very painful.. Please help! I don't know if this is an MS flare or if I'm developing Bells Palsey or some other Neurological disorder.
There are a few people here who suffer chronicly with TN - Michelle and Ren both come to mind immediately.
they are controlling their TN with a mixed bag of tricks - I hope your nurse has some ideas for you. If not, maybe one of them will see this and jump in with some ideas. As best as I know there is no simple cure for TN - being a nerve pain it has to be treated entirely different than a muscle pain.
Ok, I talked to the nurse, who said the doctor was out of town with illness in his family. She said increase my Neurontin to 300mg 3x a day. I said ok, but it just makes me sleepy and does not go away completely. Where can I fine Michelle and Ren? I need a bag of tricks!! Thank you so much!!
Well you found the Michelle here! Well my "bag of tricks" runneth over. I have been dealing with this excruciating, debilitating face/ear/scalp pain for about 7 years, but no one knew what it was until about 2 years ago.
At first it was maybe 1-2 times a year, was brief and went to the doc multiple times. They thought ear infections, shingles, nothing ever developed. now I get it almost every 3-4 weeks and it lasts 2 weeks. (don't fret, I am sure this will not happen for you.) At this point I have 2 different personalities, the "pain" me and the "normal" me. My kids, husband, family,neuro know exactly which one I am as well, immediately after seeing me. It is confusing for my kids though, and sad, but they are learning that this is out life now...hard but gotta be.
After a very long drawn out story here, this is what I have and what they (docs) found and what was tried.
I have 4 cranial nerves that are being affected by a lesion in my brain stem. (There are health pages on the upper right hand of this page, where you can learn about the nerves...and LOADS of information about MS.)
Do you have MS? I was DX April 09. It doesn't make a difference if you do or not, the pain is the same.
Here what meds have been tried? 1)Neurontin (was D/C due to double vision. It was called an allergic reaction), 2)Trileptal increased , still taking it. 3)Lamictal, High dosage, still on it, 4)Amatiptyline, still on it, 5) Lyrica, D/C due to severe depression on it. (I guess a common side effect). 6) Prestiq, still on it 7) lots and lots of pain medication. (I also take zanaflex and copaxone, but those are unrelated to my facial pain. )
All these meds were given to me over the course of the last 2 years. My MS neuro sent me to a Neuro who specialized in facial/headache pain. He was the one that changed around my meds, took some away, added others.
About 6 weeks ago, he gave me 3 shots in the back of my head and ear, that were a steroid. I HAVE HAD NOT ANY PAIN SINCE on the right side. (90% of all pain has been on the right side). My left side has acted up recently, but not bad, so I can deal with it.
He said "if" the shots work, they can last up to 3 months. I see him again in January and want more shots! If anyone ever told me I would ever be asking for shots in my head, I would have never believed them. Crazy huh...
Also in the past, I had a couple steroid infusions as well, but I didn't really notice a huge difference, so since then I opt out of the steroids.
So, thats my story with the dreaded face pain. That is by far the worst symptom I have. I can deal with everything else, actually I don't even care about any other symptoms I have with this stupid MS, except for this pain.
I know how horrible this pain in. I am sorry you are experiencing. For me it is life altering. Heck, I have had 4 natural births, and I would gladly have a 5th than have this pain.
This is Ren, with her bag of tricks. I saw that your were dx with progressive MS in 2007 so I assume you have knowledge of MS and its lovely variants. Follow Michelle's suggestion about the Health Pages. Directly below those icons is a bar that says "Search this Community". Here you can a specific question and see if there is an answer in the archives.
As for my bag of tricks: Trileptal, Neurontin (gabapentin). nortriptyline, Klonopin and Cymbalta are in my bag. The gabapentin sleepiness went away for me after 2 weeks. The BEST thing I ever had done was a spheno-palatine nerve block!
I had this procedure done 13 weeks ago. It was a series of 3 weekly appointments where 3 big Q-tips in are placed on each nostril placed as far back as possible so as to reach the spheno-palatine cluster of nerves. The Q-tips are then saturated with Marcaine and left in place for 20 minutes. Not the most comfortable procedure but WOW what a difference!
My pain was lessened with each appointment. By the 3rd one, I was pain-free!!!!!!!!!!!!!!!!
About 2 weeks a go I noticed some small twinges and zaps but that is about all. I feel like it may be wearing off slowly but I wouldn't hesitate to have it done again.
In addition, this pain management doc started Ketamine infusions for the face pain and my leg pain. I am amazed how much better I feel. I had forgotten what it felt like not to have the atypical face pain. I can live with 5 minutes of a dull ache once a week or zap to my cheek but overall, this was the best treatment I have ever had.
Essentially, it sounds like Michelle's procedure was very similar except she received her meds from the outside, and I received mine from the inside.
I hope this helps. Feel free to ask if we can help you with anything else.
Well first i want to thank you for sharing all that you have b/c I don't feel so alone in this. Yes, I have been diagnosed with primary progressive ms 3yrs ago. I probably have had it a very long time when I look back over crazy falls, flashing lights in my side vision, bladder dysfunction, etc. So, like most of us after many physician visits, I was diagnosed. My children, I have five, are very supportive. I have been married for 44yrs to a wonderful spouse, but I think he feels if I don't talk about it or read about ms, I'll be better off. Well of course I don't agree with that at all. So, I tend not to want to share these relapses with him.
What you said is "right on", they told me it may be shingles, even though I explained to them this has come and gone before. Now it has lasted going on two weeks. My neurologists has added a prednisone treatment with a side of pepcid. Not only can I not sleep w/o something pm, I still have the coming and going of the pain. It seems to increase with movement. what do think about the Lyrica? I hear it is better than gabapentin. The dr is supposed to call on Monday, any suggestions on what to suggest to him...this really sounds like what I have, should I tell him or let him figure it out?
Thank you so much for responding to my post. This type pain is really new to me. I went to my primary doctor, who ruled out ear infection, checked my carotted artery, and did blood work chking my thyroid. She said it was nerve pain and told me to get my neurologist on board and sent me on my way..with very bad pain. You talk about depressed..yet trying to keep it to myself, so my husband and kids don't think I'm just dreaming things up. It does you no good to visually look well, (still on your feet). People just assume you are "lucky" of all the diseases to have this one. How stupid! Again, I thank you and I am going to talk to my Neuro doctor on Monday and hopefully he can use one of the methods you have suggested and get me some relief.
I too deal with TN (left side only). I'm going through another round of it now (started about a 10 days ago). My doc put me on 300mg of Gabapentin 3x a day.
So far it is about 90% better. It has helped the nerve pain in my lower back 100%!!! Which I am very thankful for. The only side effect so far is some bad acne on the left side of my face and two cold sores...I'm really sensitive to lots of meds.
I read the great answers you received from Michelle, Ren, and everyone else. I'm sorry you're going through this but know that you are not alone.
Thanks for the heads up. I figure they don't want us sharing for the elephant in the room, is that it's all psychological!! Anyway, thank you for really giving me hope that someone knows and believes I am going through this. I'll keep you posted.
Thank you Kelly, I am taking exactly what you are. Sometimes I have cheated and taken half a vicodin when the pain has been unbearable. It has been easing up and not as frequent. Michelle, Ren , and Bob have been so helpful and I am glad I joined the Forum. I think it will keep me sane! I pray your pain eases and this flare will pass quickly. I'll keep in touch and thanks again.
Taking 1/2 a vicodin is not "cheating"! If there is anything that can help in any way to control your pain, take it. I am sorry your PCP sent you are your way with this pain, and didn't prescribe any pain meds at least.
Pain meds usually do not help with type of nerve pain, and technically are not supposed to, but for me they do take the edge off. I prefer to be a bit woozy and in less pain. At least that helps me to function a bit better when I am in the midst of it.
I tried Vicodin for quite a long time. My new pain med (only if need, which I keep in the house), is Percocet. I have tried oxycontin as well, didn't provided relief for me. Both my MS neuro and Pain Neuro have prescribed a large quantity for me. I always try to keep it in the house, high up, away from my kids, in case the pain comes.
I use this when I absolutely can't take the pain. There is no calling it cheating Rita. This is what they make pain meds for.
Ok, sorry for going on about it. If it helps in any way, take it. That is what it is they made it for.
Regarding your prednisone, I have the same reaction from it. Cant sleep, edgy, and still with the pain. That is why I opt out of the solu-medrol infusions now. I just don't see relief for me, and that is why I don't choose it. I actually didnt realize I ever had a choice and did what the doc ordered, but I have learned it is my own body and they understand my choice. Everyone is different and I am sure this must help for some, otherwise it wouldn't be recommended.
I also can relate to people thinking you are fine, when there is no visible signs of problem. It is very difficult for them and me. When I started wearing my leg brace, my hubby realized there must really be something wrong. Well the novelty has worn off, and he is not the most supportive person. Another story there.
So, I am ranting here, but never feel you are cheating or doing anything wrong, when it comes to trying to control your pain.
I forgot to add your question about Lyrica. It probably was the most effective med for the pain for me, but I just couldn't tolerate it. I became extremely depressed on it and was taken off.
Also, I think most docs start with Tegretol for this pain. Trileptal is very similar to this med, but less side effects. (my MS neuro told me she always gives trileptal instead of tegretol due to the side effects).
Update..I went to Nero doc ...I am set up for another MRI tomorrow..in the inbetween pain time I have been drugged with tylenol w codeine3 and lyrica. It has helped me to get bits of sleep, so I'm grateful. I pray they see what ever they need so they can treat this to stop. Thanks again for all the support
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