Questions from a newbie

General General TN & GPN (Old Site)
1

Do any of you have a feeling of being off balance or not walking straight? It is not dizziness or even light-headedness. Is that a symptom that can be connected with TN? I have usually have a headache on that side of my head. Swallowing causes my head to hurt and also putting my upper and lower teeth together.

Do you find that chewing really aggravates TN? I can't seem to eat anything that has to be chewed so I am eating things like yogurt, mashed potatoes, ice cream, etc. Have any of you found a diet that doesn't aggravate the pain? The pain is the strongest when I chew or brush my teeth.

I have not had an MRI. The neurologist said it wasn't necessary. Should it be done for all TN patients? At the time of my appt. I wasn't having this feeling of falling or not being able to walk quite right so now I am concerned. I am wondering if that is something different or part of TN or a side effect from medication.

I have ordered the book "Striking Back" but haven't received it yet.

Thanks for any help, advice, suggestions, etc.

Carol

2

Hi Carol,

I have gotten the off balance feeling from taking the med called Tegretol. The only thing that I used to do as far as the chewing is to not chew on that side of my mouth. Actually now that my pain is controlled somewhat I still don't really chew too much on that side. I think the nerves kinda remember or somethin, I guess?? I used to eat a lot of shrimp lo mein when it was really bad!! The off balance feeling did get better after being on the Tegretol for a month or so, but was always there slightly.. I had to taper off taking the Tegretol as it was causing my throat pain GN neuralgia to become worse and swallowing was becoming difficult with increased dosage. As with anything, we are all different in our reactions to medications, I just wanted to share my experience with you. Hope you feel better soon. Hugs, Min

3

I am on Gabapentin now but have only been on it for three days at one pill day. Tonight I start taking 2 pills per day. Prior to that I was on Oxcarbazepine but stopped because of the burning skin issue. The "walking like I'm slightly tipsy" effect really started after I started Oxcarbazepine and seems to have gotten worse. An example of this: a friend has a really steep driveway and I have frequently parked at the bottom and always walked up and down. Now I find I absolutely cannot force myself to walk down the driveway. Walking up it is fine.

I am learning to grin and bear it while I brush my teeth. All I need is teeth problems. I am canceling a cleaning in a couple of weeks. Just putting on face cream this morning made it start hurting.

I am so sorry to hear about your cancer but very happy that you are okay! My husband was diagnosed with colon cancer two years ago but knock on wood, is doing fine now, after chemo.

My next neurology appt. is in Nov. but I am going to gather my questions and do research and schedule an appt. way before then.

Thanks, as always, to you, Jackie, and Min. It is wonderful to have someone who understands this horrendous pain!

4

Carol,

I have had that "off" feeling. Not really vertigo or light-head but something.

As for the MRI - if your doc doesn't see the need I would caution your Doc is not very well versed with regard to TN. From my experience AND all the discussions I've seen over the last nine months on this site - an MRI is fairly standard. For a number of TN patients there is an underlying cause of TN - you should at least be ruled out as being in that category. The MRI should rule things such as MS, lesions and tumors.

Stiking Back is a great book and will help answer a lot of questions. I also suggest reading the Face Pain Info tab on our site here.

Elaine

5

This is a very good webinar from John Hopkins University...

http://webcast.jhu.edu/mediasite/Viewer/?peid=934ddaf78bd04cc9b2e323d133ca50a8

Hope you find it useful.

MS39206

6

Excellent! Thank you so much! I am watching the video now. Also reading the Face Pain Info on this website and still anxiously awaiting the Striking Back book. Thanks again.

7

Thia was a good description of the walking and movement I feel when on meds. It is not bad usually but am now on my 3rd type of anti-seizure medicaation to control this miserable disease. All these are to be taken at once. I am terribly staggering around at work! Sorry you are too but glad that I am not alone.

John

8

oh yes ~ tegretol makes me pretty much walk into walls and I felt as if the ground was floating.. It makes me look like a zombie and I just zone out .. def messes with my balance - and it's also entertaining to others :)

I can't chew anything hard when my nerve is aggravated - soups it is for me ! and like you mentioned - yogurt as well... Sometimes though just moving the mouth will trigger an attack...

A lot of neurologists think an MRI might be a waste of time being most of the time the blood vessel or artery is too small to be viewed in the MRI. Yet it was still ordered for me by my neurologist and nerusurgeon before my MVD.. I guess in some situations you can actually view what's causing the pain... I can be totally wrong on this - it's just what I was always lead to believe

Either way I hope the side effects fade for ya - it might just need time to get used to them .. Hope they work and can control your pain !!

9

Hi Carol,

Chewing and brushing teeth are common TN problems. Until I got on gabapentin/lamictal, these problems caused major changes in my life. Pain killers helped. There were only a few people who could watch me eat. Meds mostly corrected the problem I still experience occasional chewing and tooth brushing pain. You're on the right track to finding comfortable foods. You can eat but until you find the right meds it's a major drag. You're not alone on this. Check the Groups Section I believe you'll find food recommendations. I also use oxycodone for breakthrough pain.

I don't experience headaches I don't understand why an MRI has not been ordered. I thought it was common procedure .Other group members will have more to say about this. Hang in there Newbie. You won't be a Newbie for long.

All the best,

SFBill

10

From one newbie to another…I told my Dr.that Tegretol made me feel drunk and I walked like one too! Eventually that did get better but I still have to concentrate going down stairs and take them like a toddler does! Also walking down hills still is a bit weak and wobbly. I still get the occasional head swirl of dizziness but not as often as the first few weeks. I am waiting for an MRI…am on a list to see the specialist,so can’t help you with that …although I am surprised your dr did not see the need for one.
Just a quick note I found caffeine to be a really bad trigger.

Good Luck! : )

11

I am under the impression that here in the US an MRI is standard practice.

I had a MRI immeadiately with my first episodes of TN. It was then discovered that I had an eperdermoid tumor sandwich between the cranial nerves and brain stem. The eperdermoid also has touched the nerve responsible for balance and swallowing. When I was in a recent episode (b4 surgery) I had the TN pain combined with the feeling of being choked. I had to scream to convince myself I was not swallowing my tounge and not breathing.

If you are a TN patient I would insist on a quality MRI.

Good Luck, God Bless.

12

Hi, Carol.

Of course, I am no physician, but if I were you, I would want am MRI. Sure, medications could cause one to be a bit off-balance. It happens to me, at times. (but, I was never the most graceful person anyway laughs)

The reason why I believe an MRI is important is because when TN or ATN is present, the Neurologists and Pain Management Specialists I have spoken with believed it was important to rule out M.S. I do not want to scare you. I have a tendency to be off-balance, as well as having ATN and have had several MRIs’ none of which were positive for M.S., in my case. So, please don’t be alarmed by what I am saying. Yes, let me just re-state that, if I were you, I would want to have an MRI, if I had the means to do so. I do believe it is an important diagnositic test for anyone with TN or ATN.

Moving on. YES! Chewing and brushing my teeth are two of my worst triggers. However, the pain which is triggered by either, for me, is delayed by about 20 mins. after I’ve done either. Sometimes, though, I have to brush my teeth, because if I leave them unbrushed after a meal, my gums become irritated. Talking can also be a trigger for me. But, I also try to stick to softer foods than I used to tackle. (one of my favorite foods was formerly beef jerky . . . .no more for me).

The problem with this is that I was consuming a lot of carbs and starches because of this. So, now, I try to find work-arounds for this dietary wise.

I have the book “Striking Back”. I would never discredit this piece of literature. It is a useful book, but certainly more for those with classic TN, than the ATN patient.

Best of luck and of wishes,

Stef

13

Hi, Carol! I've had a balance problem since my TN was little more than an occasional ache, before dx and meds. I *think* my issue is related to my Lupus. Seems like my balance is worse when my Lupus is flaring. I can be standing STILL and suddenly tip. I might walk as if drunk. And, almost always, I have to work hard to maintain my balance in the dark. It is different from dizziness and vertigo. It can be very embarrassing.

Yes, this could be a med-related issue, but there are other possibilities. For that reason, I think you should mention it to your neuro. Seems like an MRI with contrast is in order.

I hope you get to feeling comfortable enough to eat solid foods real soon.

14

Yes I stagger a bit on trileptal the oxycarbozine (spelling not!)

If I cannot brush my teeth - I rinse mouth out with mouthwash a lot

Kimberly

15

just so the the toothpaste does’nt go stale, i squeeze a big dab on my finger and massage my mouth. don’t rinse.

16

I am, fortunately, no longer having that staggering, off balance effect since I quit Oxcarbazepine and started on Gabapentin. I am up to three Gabapentin per day (300 mg each), taking them at different times during the day and have no noticeable side effects at all, knock on wood. I am still having some jaw pain at times but nothing like it was and while I wish it wasn’t there, I can live with it. It is mostly when I eat (still a soft diet) or brush my teeth. I neglected to mention that early on (before TN diagnosis) I ended up in an emergency room at one point because of the severe pain and they did a CT scan which was normal. They gave me the CD of the CT scan which I took to my neurolgist. Maybe this is why he didn’t feel an MRI was necessary?

17

Carol, much of the medication they gave me made me dizzy. I thought for about 15 yrs. my pain was from a TMJ problem. My dentist was clueless. I would hope you would have an MRI. My pain finally became so intense I saw a Doctor (younger) who knew exactly what it was. He ordered the MRI and then referred me on to a surgeon.Good luck! Another Carol

18

Newbie to this site and the condition, so take what I say with a few grains of salt.

For me, the MRI was the first thing the doctor ordered after my first visit related to this. I then had a second visit with the doctor where we talked about her diagnosis of ATN. It seemed, and this is only my impression, that an MRI was standard to ensure that there wasn't a physical or specific cause for my symptoms; for example, something compressing the nerve. The MRI confirmed that wasn't the case, but if it was, then the doc would know to treat that issue specifically as opposed to the mysteries of trying to treat ATN.

Regarding the dizziness, that has been happening to me too; most severely and most often at each incremental step in my dosage of gabepentin. The first few nights were rough (I take mine right before bed), and then it seemed to diminish until the next time came to increase the dosage. I've recently increased to 3 pills at night (I think 900mg? I'll double-check that), and I'd say the woozy feeling for me while walking is moderate and constant throughout the night.

Hope it helps to hear another newbie's experience so far.

19

Your instinct is correct, Wrigley: high resolution MRI is becoming a practice standard for chronic face pain, to eliminate tumors and cysts as potential sources of nerve compression. People with symptomatic TN from MS or from Arterio Venous Malformations (AVM) are also put through multiple MRIs to confirm the primary disorder.

Regards, Red

20

What surgery did you go through, Rossetta?


Regards, Red


Rossetta Butler said:

Carol, much of the medication they gave me made me dizzy. I thought for about 15 yrs. my pain was from a TMJ problem. My dentist was clueless. I would hope you would have an MRI. My pain finally became so intense I saw a Doctor (younger) who knew exactly what it was. He ordered the MRI and then referred me on to a surgeon.Good luck! Another Carol