trigeminal nerve issues, anyone ever heard of this

[badatmath]

I know it is a long shot but the new dentist this morning said that the reason my lips and gums are numb is due to this nerve issue. Told me to go to the doctor.

As it happens I had a doctor this afternoon who thought I was flat out nuts but agreed to ask the dentist for details and see if follow up needed.

My worry is that I had a small stroke (I have high blood pressure) but . . . IDK what to think now.

It isn't all bad - you can poke me with a sharp stick and I won't know! - it has been several weeks stable this way so not an emergency. . .

Doctor was brand new to me today too so it didn't really make me look good asking about something not related to what I was to be seen for.

 

[Montecfo]

Sounds like nerve damage to me. I would see a neurologist.

Nerves heal slowly so patience is im order.

Has it improved any?

 

[badatmath]

No improvement but not worse. I am thinking maybe my doc today will refer me to a nuero but I expect that is weeks to months out at best. I just want it done this calendar year for $ reasons.

I didn't take it very seriously at all but dentist seemed quite alarmed so it left me feeling uneasy. But also, he is a dentist. I mean. . . .

I thought if today doc would do a scan maybe no neuro needed? That might not be realistic since it was not his specialty.

 

[Montecfo]

It is something to take seriously for sure. If you think about it, cranial nerves are the ones dentists know something about.

Good it is not progressing. And hopefully not painful.

Is it just on one side?

 

[Teacher Terry]

I know that nerve can cause a lot of pain because a friend of mine had an issue with it. Yes you definitely need to pursue the problem.

 

[badatmath]

No not painful. Mostly numb. Both sides. I figured it was a medication side effect or something like that not a "real" problem so was quite surprised. It gives me something else "fun" to do I guess.

 

[Ally]

My daughter has it and it took 2 yrs out of her life where she could hardly get out of bed. She had extreme dizziness, pain and numbness in her jaw, arms and hands and often found it hard to chew. This on top of terrible headaches. She could hardly ever drive during this time. She take medicine and had physical therapy on her neck and shoulders to build up the area around the nerve. Now she goes to a personal trainer at a gym twice a week to keep in shape. At the first of her physical therapy, she was so dizzy, they had to put her in a belt attached to the ceiling, so she couldn’t fall. She’s come a long way. I think many people have surgery on the nerve, when it gets too much.

 

[badatmath]

Wow, Ally. That sounds completely terrible. Did she go to a neuro? I was thinking they would not be a lot of use because I mean other than ruling out a stroke/tumor, what can they do? IDK.

I have been a bit dizzy but attributed it as well to my blood pressure mess (which I am seeing a new doctor for and hoping to straighten out).

 

[Ally]

Yes, she went to two neuros. At first they thought she might have MS, but ruled that out. So then she went to a specialist in Dallas, and that’s where they determine that she has the Trigeminal nerve issue. She has had a couple of good years, now that she keeps her shoulder muscles strengthened. I had to spend quite a bit of time at her house, driving our five grandchildren around, and helping her, but she’s better now.

 

[badatmath]

Thanks Ally. Glad she is better. I am thinking my case is not so bad (unless it spreads or something) but definitely not an enjoyable experience.

 

[disneysteve]

Trigeminal neuralgia is the "common" condition but that causes extreme pain. It can be associated with numbness or tingling but I'm not sure if you can have just numbness and no pain. If you can, consider yourself lucky if that's what it is. TN is often referred to as the suicide disease because the pain is so intense and unrelenting that people think about taking their life to end the pain.


Definitely see a Neurologist and find out what's going on.

 

[Koolau]

Trigeminal neuralgia is the "common" condition but that causes extreme pain. It can be associated with numbness or tingling but I'm not sure if you can have just numbness and no pain. If you can, consider yourself lucky if that's what it is. TN is often referred to as the suicide disease because the pain is so intense and unrelenting that people think about taking their life to end the pain.


Definitely see a Neurologist and find out what's going on.

Yes, and lean on your PCP or whatever doc you are seeing to get you in sooner. It can be done.

 

[Montecfo]

Sometimes neurology can be maddening. For many neurological conditions there is little they can do. They are happy if they can diagnose. Diagnose and adios as they say.

As a lay person I have dealt with some of these issues.

I think that you have no pain is a good sign.

You said it is on both sides. For me that tends to rule out something like a small benign growth.

I think if you have a mechanical. Issue such as TMJ or clinching/tooth grinding perhaps it has been damaged that way, which could be treated.

 

[badatmath]

Trigeminal neuralgia is the "common" condition but that causes extreme pain. It can be associated with numbness or tingling but I'm not sure if you can have just numbness and no pain. If you can, consider yourself lucky if that's what it is. TN is often referred to as the suicide disease because the pain is so intense and unrelenting that people think about taking their life to end the pain.


Definitely see a Neurologist and find out what's going on.

Very interesting. Definitely not painful. I thought it was a medication side effect but my new doc says that is nonsense. But I have never yet had a doctor admit any medication had a side effect and I just met the guy last week. (New guy is a nephrologist so not his area but the med I blame is for hypertension which is why they sent me to him). It was coincidence I had him same day as my freaked out dentist.

Sometimes neurology can be maddening. For many neurological conditions there is little they can do. They are happy if they can diagnose. Diagnose and adios as they say.

As a lay person I have dealt with some of these issues.

I think that you have no pain is a good sign.

You said it is on both sides. For me that tends to rule out something like a small benign growth.

I think if you have a mechanical. Issue such as TMJ or clinching/tooth grinding perhaps it has been damaged that way, which could be treated.

It is only the top lip/gums too. No TMJ. I wasn't planning to do anything except get off the meds originally and then the dentist freaked out. I don't really expect it can be fixed but need to rule out like a brain tumor or stroke I guess. But I mean what would affect only THAT?

 

[Koolau]

Very interesting. Definitely not painful. I thought it was a medication side effect but my new doc says that is nonsense. But I have never yet had a doctor admit any medication had a side effect and I just met the guy last week.

That is an interesting observation. I've never had a doc reject my report of a side effect. In fact, I've had doctors blame medications for issues that may actually be the doctor's mistake.

Classic example of docs blaming meds was one of the first NSAIDs. It was very effective but highly toxic, requiring careful monitoring and proper dosing. Doctors were telling patients things like "take as need for pain." Some patients were taking 6 does/day instead of specified ONLY 1 dose/day.

When patients ended up with liver toxicity (a known potential side effect) the docs simply washed their hands and said "its the drug" (not the bad dosing advice.) YMMV

 

[Ian S]

I've found that there is often a support group on Facebook for many health conditions. I myself belong to several and have found a lot of useful info - personal experiences especially - to help one who dealing with unusual problems. Lo and behold there are at least two for Trigeminal neuralgia.

 

[badatmath]

That is an interesting observation. I've never had a doc reject my report of a side effect. In fact, I've had doctors blame medications for issues that may actually be the doctor's mistake.

Classic example of docs blaming meds was one of the first NSAIDs. It was very effective but highly toxic, requiring careful monitoring and proper dosing. Doctors were telling patients things like "take as need for pain." Some patients were taking 6 does/day instead of specified ONLY 1 dose/day.

When patients ended up with liver toxicity (a known potential side effect) the docs simply washed their hands and said "its the drug" (not the bad dosing advice.) YMMV

Hmm. Well I was allergic to the med before this (ER visit - swollen tongue) and they acted like I made that up too. (I am not of the right race/gender to have that happen apparently).

The June ER doctor told me I was not sick until he found my potassium low along with my crazy heart rate/high bp. The problem is most of these things are transient. (By the time I saw doc a couple days later it was normal but he did refer me to the nephrologist which was last week.)

I've found that there is often a support group on Facebook for many health conditions. I myself belong to several and have found a lot of useful info - personal experiences especially - to help one who dealing with unusual problems. Lo and behold there are at least two for Trigeminal neuralgia.

I'm not on facebook but I can see if there are others. I am still not convinced it is not the meds. But since I am allergic to ACE it lets out a whole lot of med choices and after 10 months of things that failed to lower the bp doc seems disinterested.

I think I am of average intelligence and not hysterical so I am not sure what I am doing wrong to show the problem. Part of it is I think the cardiologist and nephrologist only want their respective specialties but the cardio is the one who gave the meds. The primary doesn't want to get involved beyond "call the cardio".

I also "look healthy". 55, not overweight, blood work typically very good, etc.

 

[Montecfo]

Hmm. Well I was allergic to the med before this (ER visit - swollen tongue) and they acted like I made that up too. (I am not of the right race/gender to have that happen apparently).

The June ER doctor told me I was not sick until he found my potassium low along with my crazy heart rate/high bp. The problem is most of these things are transient. (By the time I saw doc a couple days later it was normal but he did refer me to the nephrologist which was last week.)




I'm not on facebook but I can see if there are others. I am still not convinced it is not the meds. But since I am allergic to ACE it lets out a whole lot of med choices.

I think I am of average intelligence and not hysterical so I am not sure what I am doing wrong to show the problem. Part of it is I think the cardiologist and nephrologist only want their respective specialties but the cardio is the one who gave the meds. The primary doesn't want to get involved beyond "call the cardio".

Badatmath, you can join Facebook, leave profile blank and just use to join groups. I recommend this.

Also, what medication are you referring to? It was not clear to me you had identified a possible cause.

 

[Koolau]

Hmm. Well I was allergic to the med before this (ER visit - swollen tongue) and they acted like I made that up too. (I am not of the right race/gender to have that happen apparently).

The June ER doctor told me I was not sick until he found my potassium low along with my crazy heart rate/high bp. The problem is most of these things are transient. (By the time I saw doc a couple days later it was normal but he did refer me to the nephrologist which was last week.)

There are a lot more "bad" docs than bad meds IMHO. BUT every medicine has side effects - some severe. Docs who pooh, pooh your symptoms need to be flogged with their stethoscopes! You have to be your own advocate or have someone there to be your advocate.

I'm always puzzled when people believe meds should not have side effects. I marvel that adds for "natural products" say "no side effects." There's an old saying in the pharma biz: "Show me a drug without side effects and I'll show you a drug without effect." SO, docs SHOULD be looking for side effects! End of rant. Sorry.

I've had good docs and bad docs. Kinda like good mechanics and bad ones, really.

I really hope you resolve your condition. Not KNOWING what is wrong is particularly disturbing. SOMEONE can help you and I hope you find that person soon. Blessings and aloha.

 

[badatmath]

Badatmath, you can join Facebook, leave profile blank and just use to join groups. I recommend this.

Also, what medication are you referring to? It was not clear to me you had identified a possible cause.

I didn't know I could facebook that way never touched it.

Well, nephrologist says I am full of crap but Valsartan 320 is the newest addition to bp meds (also amlo 5) and I have weird racing heart problems (resting heart rate will be 115 some days, 70 others) and this dry, tight, numb, weird mouth issue but the nephrologist said that was nonsense to think it related (started Val end of April, issue cropped up July). He took blood and I go back in 2 weeks. He clearly thought valsartan was a great med though and that I should see my primary doc for help (can't get in for 5 weeks). Could I be allergic to it? IDK. I read that is if you were allergic to ACE you should not take ARB either . . . first neruo I called doesn't take my BCBS and so I left a msg for the 2nd one. I don't know that the primary would overrule the cardiologist who prescribed the med even if I saw her. (Generally am healthy and prior to the HTN only had physicals/screenings). I don't think the cardio will do anything at least until he has a report from the kidney guy not to mention cardio is retiring 9/1.
Next neuro is end of Nov I didn't book it. . .

 

[badatmath]

Just got my blood work back online - all green except cortisol is about 10 points over the range. . . No one has ever tested that so IDK if it is always like that or not.

Awful healthy to be such a mess. . . I could live with the unpleasant gum/lip stuff as long as it doesn't spread

 

[Koolau]

I didn't know I could facebook that way never touched it.

Well, nephrologist says I am full of crap but Valsartan 320 is the newest addition to bp meds (also amlo 5) and I have weird racing heart problems (resting heart rate will be 115 some days, 70 others) and this dry, tight, numb, weird mouth issue but the nephrologist said that was nonsense to think it related (started Val end of April, issue cropped up July). He took blood and I go back in 2 weeks. He clearly thought valsartan was a great med though and that I should see my primary doc for help (can't get in for 5 weeks). Could I be allergic to it? IDK. I read that is if you were allergic to ACE you should not take ARB either . . . first neruo I called doesn't take my BCBS and so I left a msg for the 2nd one. I don't know that the primary would overrule the cardiologist who prescribed the med even if I saw her. (Generally am healthy and prior to the HTN only had physicals/screenings). I don't think the cardio will do anything at least until he has a report from the kidney guy not to mention cardio is retiring 9/1.
Next neuro is end of Nov I didn't book it. . .

When your heart races, have you ever been checked for (for instance) A-fib. When my heart beings to race, it's always A-fib. I have the Kardiomobile (SP?) device which confirms it. Not a bad buy at around $80? (My sister gave me mine for Christmas.)

 

[Ian S]

One of the rare side effects of Valsartan:

Numbness or tingling in the hands, feet or lips

from https://www.drugwatch.com/valsartan/side-effects/

 

[Scratchy]

Since it is on both sides, it's unlikely to be "trigeminal neuralgia" as that is usually only on one side, and usually due to local irritation of the nerve. In your case, I'd think a systemic cause (medication effect or a wide variety other conditions) would need to be considered. I agree you should see a neurologist. Best wishes for a speedy resolution.

 

[badatmath]

One of the rare side effects of Valsartan:
from https://www.drugwatch.com/valsartan/side-effects/

Wow thanks I will take this to the kidney doc next week! My feet actually feel funny too but I know I am not diabetic and thought nothing of it.

Since it is on both sides, it's unlikely to be "trigeminal neuralgia" as that is usually only on one side, and usually due to local irritation of the nerve. In your case, I'd think a systemic cause (medication effect or a wide variety other conditions) would need to be considered. I agree you should see a neurologist. Best wishes for a speedy resolution.

Thank you. I am going to push to get off the meds first it is cheap and easy thought I think unlikely to work well (due to doctor likes them). All the blood they have taken from me in the last few months is certainly pretty good. . . And I would say I shouldn't have a rare side effect except I did with the ACE inhibitors too.

When your heart races, have you ever been checked for (for instance) A-fib. When my heart beings to race, it's always A-fib. I have the Kardiomobile (SP?) device which confirms it. Not a bad buy at around $80? (My sister gave me mine for Christmas.)

No its new but I did have angiogram in Nov no trouble found then. I was in hospital over the blood pressure mess nothing showed at the time. Kind of a cool little test thing I bet a lot of people here would like it.

Wish my doctors were as attentive as my ER buddies.