Hello Everyone.I hope you do not mind me throwing this question out to you here. I am from limboland (currently) with no dx. I have had issues in past with migraine and am seeing a nueroligist for past 4 years. I have posted here before as I have had MRI's in past with abnormalities suggestive of MS. Long Story short
I had an appt. with doc this past Tuesday and discussed a new issue with me. Facial pain. I have facial pain on left side of face with a numb spot on side of nose and on upper left lip. This started about a week before Christmas and I had a burning sensation as well around eye and side of face but numbness was only on those 2 speciific spots..My doc was on vaca at time...This has progressed as it is down my jaw and cheek... I would not wake up with it but after getting ready for work putting makeup on for example and then going out in cold air my face would really hurt..Only left side though ..I told him about this on appt. and he said he does not feel it is med effect, AND I have had no migraines..This is becoming more painful now than initially annoying.
He scheduled me for an MRI. He also did a couple of neuro tests such as follow his finger with eyes, shut my eyes tight and open and the smile test...I don't know what this was for..
He told me if anything neurological happens go straight to ER..He asked me if I had dental issues, trauma or had any dental work done. I have not.
Anyhow..I got the my MRI results which show no chnage from last MRI, no mass, no hemmorage, acute infarct, no restricted diffusion.
hyperintense FLAIR periventricular and subcortical wm abnormality essentially stable in number and size from last MRI
(I have 20 of them)
Thanks guys. Any input would be great. I see him in a week..He also did another Lyme's titer test..
I am sort of bumming there was no change as I have been searching for an answer for almost 2 yrs now
My question is if there is no new lesions what could this pain be coming from and what does the MRI rule out.
I don't want this pain to be dismissed because MRI is same...
Hi. Sorry you are having these sympoms now, as well as being in limbo. I am very similar, with a history of migraine. Right now, dr is trying to rule out Atypical Migraine. But I have had the facial pain for about a year. Did your dr mention Trigeminal Neuralgia? It sounds very similar to what you described and what your triggers are. You might want to check that out. I have not been diagnosed with TN as of yet, still going through the process. But the last neuro did start me on Tegretol, as that has been shown to be effective for some people for the TN.
Also, have you always had migraine? Were they the classic type with aura and pain, nausea? I have been surprised to learn that migraine can present with aura only, no pain; with pain in different areas, including abdomen (not kidding); and can cause tingling and numbness in the limbs and face, called Hemiplegic Migraine. These mimic a stroke, although the symptoms of paralysis are usually temporary. They can be very serious.
You probably are familiar with this stuff, since you are under a neuros care and they have probably been mentioned. But just in case, thought I'd throw those out there.
I sounds more like "Atypical Facial Pain" than Trigeminal Neuralgia (TN) TN usually has a "lightning bolt through the face" component. You might want to search this forum. I prevoiusly posted an online site that has a questionnaire to help you determine what typye of face pain you have.
and thanks for the info..I think have had typical migraines but yes had some vomitting initially until I got on a med.....they seem to be be random and I had never really suffered from headache they came out no where...
It's amazing all the types of migraines there are....Doc never said anything about TN..He did not feel or say that he felt this was related to migraine either..not yet anyway..I see him next Tuesday.. Hopefully he will have an answer for me as to what he thinks.
As Bob mentioned also, atypical facial pain, nerve pain, etc are possibilities and the Tegretol or carbamazepine (I think) is providing relief for some. It has helped with me, but I think the dose needs to be increased. Still have it every day, sometimes out of nowhere it will hit like a stab. Then other times it starts in my cheek, and radiates to right above my ear, temple, back of head and jaw on the left side. Usually don't wake up with it, and early mornings are my best no-pain times. But after I have my coffee, or put on makeup, wash my face, etc. then it hits. And it will come back throughout the day. But usually, the first hit is the worst.
I am 43, and even though I may feel old, I don't think that's considered "old lady" as they say. LOL So I don't know if I fit the norm. Bob has TN and ON and MS. He probably has a lot more info on the facial pain.
Let me know what you find out Tues. I'm going Mon to my GP and hoping to adjust the meds to get some more relief. Hope you find some relief too!
Thank you agian... I was afraid there would not be anything for it..regardless if it is TN or just atypical Facial Pain...You actually described it to a "T"..At first I thought maybe my makeup was bad or something...then I thought well it is only one side...then I thought well maybe it's just the weather but it is only one side..It comes and goes and does have a stab or too included but mostly just burning knawing pain..and then sometimes feels like I need to itch my numb spots...geezzzz...what next...I will definately keep you posted....
Do you ever feel like your nose is stuffy or does your eye(s) water when you are in pain? I get the pain in my teeth too and it runs from my back teeth to the tooth right in the middle. Just to be sure, I had my dentist check me out, teeth are ok. Went to optometrist, eye exam normal, just need readers. Well, glasses are just about out of the question because of the face pain. But at least I have ruled out other things. And the fact that the carbamazepine is working some tells me it is nerve pain. Just not sure from what.
I got my name, twitchychick, from the fact that about 14 months ago my face started to twitch. Cut to now and I have this pain. At least the twitching is better. MUCH better! Guess I should change my name to facepainchick! LOL
We haven't formally met , so welcome! I have atypical face pain and no lesion on my MRI to account for it. We have discussed this before and I "think" there is a health page on it, if not you can go to "Search this community" located on this page just above Recent Activity.
As for treatment of the pain , I take Trileptal (similar to Tegretol) and I am currently going to a pain management doc. He did a spheno-palitine block. It has lasted 16 weeks. It would have lasted longer but I headed into a flare. Below is one of the links discussing this. There is another one as well but my left hand and arm as well as my face are going numb and tingling and it is difficult to type and think. Once I get my steroids and my brain back I can answer more completely for you.
Cool test. Every time I look up TN, it always is the excruciating electrical shock pain that gets talked about. This test says I might have TN2. Or, if I were to check the MS box yes, I'd have STN. Maybe that's the kicker that got me my new MRIs and VEP. We'll see next week. Thanks for re-posting it.
Thanks so much for your input..Bob that was an awesome test to use.....I do want to go back and take because although I do get the little shock like pains they are not as constant as the brning..and the numbness is not always there..it comes and goes..so..some answers were hard to answer yes/no to exactly.
Ren-thanks for the link
Thanks again and I will definatley let you all know my results on follow up.
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