Hello everyone. I am new to this group. I have suffered from L TN since I was 31; had an MVD in 2006 and have done very well, but the past two months my younger brother; now aged 55 has been having tingling in his R face, mostly in the ophthalmic area and mandibular as well. Steroids did not work. Now it is getting much worse and he reports that sometimes the tingling goes across his chin and up to the OTHER side of his face in the maxillary area. He cannot get in to see a neurologist until the 16th of July. At first, I thought he had the beginnings of TN but now I am wondering if it may be some other issue.
Can anyone give me some insight? I am very concerned this could be an immediate health concern. Thank you.
Linda. Sorry to hear about your brother. I had tingling feeling on right side of lower jaw. I could run my fingers on my face in that area and it would set it off. Perhaps he could visit his family doctor prior. I know Carbamazepine worked for me as well as Lyrica. In the meantime have him keep the area warm ie hot compresses/showers or even a very soft scarf. He may even wish to try capsacium cream in that area. These are only suggestions as this is what I did to help relieve feelings
Hopefully he gets feeling better soon. Best wishes
Chippy
Hi Linda
I would also make sure that he see’s an ENT and gets a CT or MRI of his maxillary sinus too. I had symptoms similar to your brother. Not to scare you but i was misdiagnosed with TN for 4 yrs. When they finally discovered i had a large, malignant tumor in my maxillary sinus which grew up and behind my eye. A brain MRI will not necessarily show a tumor in the sinus area. I hope this is not the case with your brother.
I think anything any of us say here is opinion only. We're not doctors. If he is near a big city I would recommend he see a Neuro that has a lot of experience with TN. Neuros, like anybody else, differ. And they can differ a lot. It may not be TN. Tingling seems to me to indicate nerve aggravation of some form. Going into the L side concerns me. But TN on both sides is rarer than on one side. So it may (hopefully) be something else. The 16th is only 5 days away. Remember this, and this is. If he doesn't get help from one dr., see another. But, you have to give a doctor time to work.
Linda, I am sorry to hear about your brother’s health. I also suffer from facial pain. Trileptal is a huge help for me. I started out on Tegretal but couldn’t take the side effects. It was too strong for me. I agree with what someone else said. Try to get your brother to see his PC in the meantime. Even a trip to the ER might be worth it as they can give him something to mange the pain until he can see his Neuro. Where are you all located? Have you considered looking into the Neuro directory here in this site? It’s possible there could be a Neuro near you who’d be able to see your brother sooner. Sorry I can’t be more help to you. I’ll keep you in my thoughts & prayers.
I had tingling of my upper cheek on and off for years which my neurologist declared normal until a few months after visiting him I developed full blown TN. He listened then. Best of luck . Xxx
Very sorry to hear about your brother. I agree a Jimmy W: all these responses should be considered reflections of our personal experiences & knowledge of our own disease process. having said that, my own experience started off very atypical -including bilateral symptoms - which helped delay my diagnosis. I even saw a neurologist who told me it could not be neurological in nature b/c it was bilateral. There are numerous possible causes. And as a few people mentioned, I strongly suggest he see someone very familiar with facial pain. That may be a neurologist, a pain management MD, a maxillofacial surgeon, etc. if they’re not familiar with facial pain syndromes, it’s easy to get a misdiagnosis. I echo the idea of going through the physician directory on this site to find a professional closest to where he lives. Good luck.
I would have him see his family doctor. Tingling can be as simple as a pinched nerve or the symptom of any number of conditions. Tingling can happen with TN...but it can also occur with many other neurological conditions. The 16 th isn't that far off so please let us know how your brother is doing after his appt. In the mean time he should see a GP.
It sounds like you’re describing some type of dyesthesia or allodynia, both of which are a form of TN, and TN can be hereditary to some extent. You might want to check the following links to learn a bit more about these two form of TN to see if they correspond to your brother’s situation. If so, an anti-epileptic might help. https://en.wikipedia.org/wiki/Dysesthesia , https://en.wikipedia.org/wiki/Allodynia
I know about where you are. Probably near Durango. Yes, beautiful, just probably not close to neuros real knowldegable with TN. So yes, Alb or Denver would be best bet.
Odeliasimone said:
Yes, thank you, Jimmy. I totally agree with you about neurologists! Their skill and empathy levels vary widely. We may have to drive the 320 miles to Englewood, CO. We are in the extreme SW of Colorado. It is beautiful, but definitely out of the loop for many specialists. Our nearest "big" city is Albuquerque, NM
Linda
Jimmy Works said:
I think anything any of us say here is opinion only. We're not doctors. If he is near a big city I would recommend he see a Neuro that has a lot of experience with TN. Neuros, like anybody else, differ. And they can differ a lot. It may not be TN. Tingling seems to me to indicate nerve aggravation of some form. Going into the L side concerns me. But TN on both sides is rarer than on one side. So it may (hopefully) be something else. The 16th is only 5 days away. Remember this, and this is. If he doesn't get help from one dr., see another. But, you have to give a doctor time to work.
Sandio, I am so sorry for your misdiagnosis and for the battle you undertook with your malignant tumor. You have lived through the stuff of nightmares. I hope that you've been able to achieve full remission.
Janet
a/k/a Emily's mom
sandio said:
Hi Linda I would also make sure that he see's an ENT and gets a CT or MRI of his maxillary sinus too. I had symptoms similar to your brother. Not to scare you but i was misdiagnosed with TN for 4 yrs. When they finally discovered i had a large, malignant tumor in my maxillary sinus which grew up and behind my eye. A brain MRI will not necessarily show a tumor in the sinus area. I hope this is not the case with your brother.
When I checked out of hospital after mvd in 2006 the neuro prescribed pregabalin for tingling. I didn’t take it because of severe side effects. Instead I took homoeopathic medicine china sulph 200. Even now I occasionally take whenever it spikes. It’s under contol.
Everyone here knows the excruciating pain and feel for you and your brother! Again we are not doctors. For me heat helps, I am in the bathtub as I write. Lidocaine is better in case of emergency, which I just had hence the heat too. Gabapentin is best for me and that's only if your brother has TN. An MRI as well as a trip to the dentist to make sure it's nothing dental and as you've read that's no guarantee. It's a frustrating process I know. I wish you both all the luck!!!
I recommend asking for thin slice imaging through a FIESTA MRI and MRA. Those symptoms happened to me and the radioneurosurgeon discovered an unruptured aneuryism in a cerebral artery pressing on a nerve. Depending on the location, it can be treated endoscopically or with cyberknife.
The FIESTA MRI is state-of-the-art for finding compressions that may not appear on earlier forms of the MRI. Some neurologists will recommend a two-week course of Tegretol or oxycarbamazepine; if one of these related seizure meds alleviates the pain, the course might confirm a case of TN. (I just checked the spelling for oxycarbamazepine. Even spelled correctly, it still looks wrong! But, this is the correct spelling.)