Neurologists can't decide if I have TN - please help :)

General General TN & GPN (Old Site)
1

Hi All,

I was hoping I could explain my symptoms to see if they match anyone else's as the two neurologists I have been to cannot agree if I have Trigeminal Neuralgia!

The first one says definitely yes and the 2nd opinion said definitely NOT! So confusing :(

I go for a 3rd opinion on Tuesday but wanted to check in with some folks that would probably know better than these docs..lol.

The feeling I get is like a toothache but most of the time. Dentists say my teeth seem fine but I do grind my teeth, to the point where I have cracked one. One dentist suggested my bite may be off and suggested an occlusal adjustment but like everything else, I cant find two dentists that agree on this.

Another dentist suggested Botox injections. The first neurologist wants me to take seizure medications..which makes ne nervous because my dad and daughter both have been on seizure medication and both said it made them feel strange.

Things that seem to make it worse:

exercising

alcohol (drinking it makes the pain go away - next day feels worse)

lack of sleep

stress maybe?

Things that make it better:

cold food or drinks

flossing my teeth - sounds strange I know!

wearing my mouth guard (during the day as well as at night)

I don't feel any pain at night when I am sleeping. Any input/advice would be greatly appreciated as I am pretty scared. I am probably forgetting to add something!

Looking forward to hearing from someone :)

2

I have to think you are leaving out some important information. I don't think a neurologist would come up with a trigeminal neuralgia diagnosis with the information as you have presented to us.

Maybe the third neurologist will clear this up for you.

Botox injections do not help treat trigeminal neuralgia (according to TN specialist, Dr. Ronald Brisman).

3

So sorry you are feeling pain and I understand your fear. I am new with TN pain and I believe in trying a lot of different strategies that would be acceptable to your doctor. I would try one day of each max dose for you 1) Aspirin then 2) Tylenol and then 3) Advil if you have not tried these yet (each a little different). Traditionally these would not help with TN pain so might help you steer away from the TN diagnosis if you got relief. I would see if my doctor would prescribe antibiotics (again not a traditional help for TN). Any chance TMJ from grinding your teeth??? Also what may be helpful is describing your pain from 1(light) to 10 (intense), worse pain you have felt). I notice that this helps me. I hate the pain so much I was making every little level 3 pain a big deal because of my level of fear. This forum was a great help to me even though the stories of pain can become overwhelming. Start a document and copy all the text that you think might be helpful for you or your doc. Good luck. Stay calm and confident! YOU WILL FIND A WAY THROUGH!

4

Thanks for the replies Don and msbluebells!

I don't think I left anything out, although totally possible..this whole thing has got me a bit out of sorts. The neurologist that diagnosed TN said it was "atypical" TN because it didn't fit into the usual symptoms. The 2nd neurologist said that's hogwash and that it isn't TN at all but was not able to offer an alternative explanation.

I was just wondering if anyone out there was also diagnosed with TN and had it presented in the same manner as it has for me. I would like to think it is not TN because the thought of taking the same anti-seizure medication that made my daughter feel horrible honestly frightens me :(

I am seeing the third neurologist soon and also another ENT...I am also contemplating another dentist...id really do anything to find answers at this point, it is just very frustrating not knowing what is going on. It's just that all the literature I find on TN says different symptoms than I feel..like the cold foods actually HELP me, not triggering an attack.

Sorry for the rambling...thanks to anyone taking the time to read this!

5

Thanks Msbluebells - I will try your suggestion on the max dose of those over the counter medicines...just wondering..what's the reasoning on trying all three? Is it that different medicines treat different pain causes differently?


msbluebells said:

So sorry you are feeling pain and I understand your fear. I am new with TN pain and I believe in trying a lot of different strategies that would be acceptable to your doctor. I would try one day of each max dose for you 1) Aspirin then 2) Tylenol and then 3) Advil if you have not tried these yet (each a little different). Traditionally these would not help with TN pain so might help you steer away from the TN diagnosis if you got relief. I would see if my doctor would prescribe antibiotics (again not a traditional help for TN). Any chance TMJ from grinding your teeth??? Also what may be helpful is describing your pain from 1(light) to 10 (intense), worse pain you have felt). I notice that this helps me. I hate the pain so much I was making every little level 3 pain a big deal because of my level of fear. This forum was a great help to me even though the stories of pain can become overwhelming. Start a document and copy all the text that you think might be helpful for you or your doc. Good luck. Stay calm and confident! YOU WILL FIND A WAY THROUGH!

6

If no over the counter pain meds work and a third neurologist suggests anti- seizure meds, then give them a shot. If they take away your pain, that’s a good TN indication.

I don’t think the final word is in on Botox for TN, but that’s an expensive way to go. They have to be repeated every few months. Who knows what Botox will ultimately do.

Good luck with your diagnosis. I hope you don’t have it.
Bellalarke

7

First ..to your original post:

Alcohol...definatly a match there. Matter of fact, alcohol is what i used for relief for a long while before getting a proper diagnoses. However, as you mention, the next day when it wore off, things were sometimes worse. I didn't do it, but my thinking was, hell, i'll just stay drunk 24/7 and it won't hurt. But, can't go to work drunk, so...*shrugs*

Stress and/or lack of sleep...yep. The more stressed out or tired i am, the more (and more often) i get pain. Matter of fact, even now with the meds, there are times of increased stress that still increase my pain.

Things making it better...yep, i used to hold cool liquids in my mouth and that helped a lot. (as all my trigger points are inside my mouth). I'd walk around the house with a large cup of cold water and just look like a chipmunk with my cheeks all puffed out.

Flossing...again, yes. Before diagnosis, i used to floss to the point of bleeding when i was in pain. Actually getting my gums/mouth to bleed seemed to help most, but just flossing in the area of pain offered some relief.

Second..as to suggestions and whatnot. I agree with trying the over the counter pain meds to see if you get any relief. If you do, it's probably not TN. If you don't, then i agree that you might want to try the anti-seizure meds. If they provide relief, that is a good indicator of actually having TN. There are a lot of different meds with different side effects but sometimes you can find a good trade off. I'd take my side effects over TN pain any day.

Either way, i hope your third neurologist can help clear things up. It's hard to know what to do when the medical professionals don't even know what's going on, not to mention frustrating!

Wishing you peace and hoping you do not have TN

~Mistee

8

H I Love Roses, I had just recommended trying all three over the counter traditional medications because they are so common and yet each are different compound. If compund is the right word. I would consider beginning to think of yourself as a research scientist. From what I have been able to ascertain is that you are going to have to learn about you and your condition 4 or 5 times better than the doctor. I am learning this from long term thrivers with physical conditions is that they learn that they take 100% responsibility for themselves. I am speaking here psychologically. If you look through the forum people share both positive and negative examples. I think trying different things that are available and researching the results will teach you things about your physical reactions. Go slow with most of your trials and typically try one thing at a time at first.

One thing I notice that I have to work on is being a really effective communicator with my doctors since my time with them is so short. I would have everything in writing. All the symptoms and when they started. Have your questions written out. Things that you have learned from your research. Be as succinct as possible. Have others review with you so that you can make sure you have it down pat. Incorporate their good suggestions. Also take someone with you with to the doctors and debrief with them.

Also I would not rule out anti-seizure medication because others in your family had problems. You can take it very slow. Giving yourself plenty of time to get use to the lower levels. If you experience side-effects in the first weeks does not mean long term you will feel any side effects. I believe an important aspect is feeling positive about the medications that you are taking and think about how they are trying to help you. Of course something wrong for you is just wrong for you. And I think I would try over the counter first. Oh I don't mean to act like a know it all. I only know my experience over the last couple of months. AND I DO WISH THE BEST FOR YOU. I think using the medications to try to help you figure out whether it is TN or something else would be my first goal. GOOD LUCK! Keep us up to date. Tina

I Love Roses said:

Thanks Msbluebells - I will try your suggestion on the max dose of those over the counter medicines...just wondering..what's the reasoning on trying all three? Is it that different medicines treat different pain causes differently?


msbluebells said:

So sorry you are feeling pain and I understand your fear. I am new with TN pain and I believe in trying a lot of different strategies that would be acceptable to your doctor. I would try one day of each max dose for you 1) Aspirin then 2) Tylenol and then 3) Advil if you have not tried these yet (each a little different). Traditionally these would not help with TN pain so might help you steer away from the TN diagnosis if you got relief. I would see if my doctor would prescribe antibiotics (again not a traditional help for TN). Any chance TMJ from grinding your teeth??? Also what may be helpful is describing your pain from 1(light) to 10 (intense), worse pain you have felt). I notice that this helps me. I hate the pain so much I was making every little level 3 pain a big deal because of my level of fear. This forum was a great help to me even though the stories of pain can become overwhelming. Start a document and copy all the text that you think might be helpful for you or your doc. Good luck. Stay calm and confident! YOU WILL FIND A WAY THROUGH!

9

My TN started with a tooth pain that the dentist couldn't find a reason for.He ended up saying,"well sometimes allergies can do strange things".It was a good year after that i got my first "attack" which left no doubt whatsoever.I diagnosed myself after googling face pain.I printed it out and took it to my GP.Good luck!

10

Totally agree with all of the above, the best way to know if you have TN is to at least try the meds they suggest, if it stops the pain it probably is. But I hope for you, it is not. I went a long time without diagnosis, lost a few teeth for no reason, just wanted the pain to stop. I am very sensitive when it comes to meds, a benadryl can knock me out, but I have not had any issues using Gabapentin, good times lower dose, bad times higher dose, but no side effects. As mentioned, meds can effect us all differently. Sorry you are having such a confusing time, keep at it, be your own advocate and if possible take someone with you, it helps, they can hit you with so much, good to have an extra set of ears and to help with questions. I hope the 3rd neurologist can shed some light for you. Let us know.

11

Mannnny here no pain sleeping.



Try a tube first…of anyyyyybody of your dr…dds…



to call you in a tube of lidocaine cream for your face …or if needed lidocaine mouthwash…



That might tell you in minutes if it is TN…might… Works for a large amount off people here…helps a lot, a little, or none…find out ASAP



last, go to google…images



Type in Trigeminal Neuralgia



Look at those…are they your pains?





Then try google images… Atypical face pain



Come back after google and tell us what you found! We are pretty really good this…

12

For 8 years I had intermittent pain in my upper right teeth which I attributed to an Arnold Chiari Malformation. It was not until December 2011 that it became constant, and was soon accompanied by the shocking pains in my face. This began the road that ultimately led to my diagnosis of bilateral ATN. Funny thing about this disorder is that everyone can have different symptoms, but essentially the same disorder. I do hope you get a definitive diagnosis when you see the third neuro, but if not, I would encourage you to keep up,the search until you do. It can be exhausting, and frustrating to keep going to doctors, but you really need to be your own advocate when dealing with a relatively rare problem like TN, or ATN.
best of luck, and please keep us all posted!
Christine

13

Where do you live? There a few excellent neurosurgeon with TN experience listed in the doctors tab on this page, perhaps there is one close enough for you to see? I actually travel out of town to see my NS.

14

Hi roses. I would say I’ve struggled for years with tooth pain and for the 3yrs I’ve been diagnosed atypical tn the pain through my teeth is awful it here and through my eye that the tn1 strikes. It does interfere with sleep. My mouth guard can be helpful. Good luck. Try anti - seizure they really can help. Helen x