Have you had horrible pain when trying to drink anything?

General General TN & GPN (Old Site)
1

Will try to make this as short as possible. My TN has got much worse in the last couple of months. I have went with as much Dilantin and Gabapentin as I can. My neurologist gave me a two week starter pak of "Vimpat" to add to my dilantin and gabapentin if it got to a point that I couldn't handle it. Well, it has got to that point and I started on my Vimpat this morning. Does anyone know how long it will take for this to start helping? It seems to have helped somewhat, but that somewhat isn't a whole lot. It has helped the pulsating pain that brings screams. Also, I cannot drink anything without severe pain the tooth area. I have not been able to brush my upper right teeth in a week or so and yesterday just once I tried to brush the others just a little. Yesterday, for the first time, I have severe pain in the tooth area when trying to drink. I have barely managed to get my pills down today, reminds me a lot of when the root of the tooth dies.

My neurologist says, let it die. I had asked him about what if this situation were to come up just a couple of weeks ago. He says, let them rot and fall out but don't go to the dentist. It just so happens those teeth are capped. I know the root can still die as I have had that happen but how do I know? Does anyone else have the severe pain of TN when trying to drink anything.

I am really thirsty. It has been all I can do to get my meds down today.

2

Maddy, I think you really should speak to a medical practitioner about this. The meds we take are very strong and you really need to take liquids with them where possible. I hope you feel somewhat better soon.

3

I have managed to down the meds with some water, but I usually drink a lot of water.

Every once in a while I am taking a sip of water but not as much as I am used to, that is probably why I feel so thirsty.

xxOxx

4

Maddy, I have this pain while drinking too. I do not know if this helps but this is what I do. First, I heat the water in the microwave so it is warm. I find cold water or anything cold really sets it off. Then I sip it trying to keep it away from my lower teeth where the pain is. I hold it there not letting anything drip down then swallow it. Taking pills is very hard too. The important thing is, I should have mentioned this first, is to completely relax your mouth as much as you can. If some water slips down, and it will at some point, just let it be. Try not to fight it. I try to tell myself "this is just a sensation" and not label it as pain. I hope you don't think I am acting like I know everything! I just totally know what you are going through and the above really helped me. Yes, and what the other comment by Jackie says, you need to drink a lot of water. Usually after the stab of pain hits you are less likely to feel it for a little while. Good luck! Mary

5

Thank you Mary, when the stab of pain hits me, it just gets more intense with each sip.

I was really feeling like maybe I have had a root of a tooth die, it is hitting on a capped tooth.

X-rays don't tell if that if a root is dying. Is that how your's feels. I was trying to determine

if that was the problem. I am trying all kinds of ways to get liquids down, just haven't tried standing on my head yet, lol My problem is on the top teeth, you would think that would be less of a problem. Thanks again for replying to my post. Hang in there

xxOxx

6

This nasty Disorder requires constant experimentation. What helps one day, doesn't work the next day. My meds, gabapentin and lamictal work fairly well but breakthroughs occur. But I never have had a pain free teeth-brushing experience. If I have a hot shower first, shaving and tooth (teeth,whatever)brushing pain is less. I agree with MaryHelenL in that warm water makes pill popping easier. Also, I look at the ceiling when I take pills. Maybe gravity, I don't know why, but it lessens my pain. Are you taking any opiates? Oxycodone has helped me a lot. I drive for a living so I hold off on oxycodone until after work. However, on the weekends I start the day by sprinkling oxycodone on my cheerios. Keep experimenting. Here is a link to vimpat,in case you haven't checked out the side effects. I have no knowledge of vimpat but thought you might find this useful.

7

P.S. I meant to say that I look at the ceiling when I brush my teeth.

8

Unfortunately I cannot take any of the wonderful narcotic drugs. Really has been a problem in a lot of areas.



SF Bill said:

This nasty Disorder requires constant experimentation. What helps one day, doesn't work the next day. My meds, gabapentin and lamictal work fairly well but breakthroughs occur. But I never have had a pain free teeth-brushing experience. If I have a hot shower first, shaving and tooth (teeth,whatever)brushing pain is less. I agree with MaryHelenL in that warm water makes pill popping easier. Also, I look at the ceiling when I take pills. Maybe gravity, I don't know why, but it lessens my pain. Are you taking any opiates? Oxycodone has helped me a lot. I drive for a living so I hold off on oxycodone until after work. However, on the weekends I start the day by sprinkling oxycodone on my cheerios. Keep experimenting. Here is a link to vimpat,in case you haven't checked out the side effects. I have no knowledge of vimpat but thought you might find this useful.

9

You probably know all this. I don't know anything about Vimpat. I pasted this from Yahoo health. It is the regular list that scares the !@#$ out of everyone.

Lacosamide Oral tablet

What should I watch for while using this medicine?

Visit your doctor or health care professional for regular checks on your progress. This medicine needs careful monitoring.

Wear a medical ID bracelet or chain, and carry a card that describes your disease and details of your medicine and dosage times.

You may get drowsy or dizzy. Do not drive, use machinery, or do anything that needs mental alertness until you know how this medicine affects you. Do not stand or sit up quickly, especially if you are an older patient. This reduces the risk of dizzy or fainting spells. Alcohol may interfere with the effect of this medicine. Avoid alcoholic drinks.

The use of this medicine may increase the chance of suicidal thoughts or actions. Pay special attention to how you are responding while on this medicine. Any worsening of mood, or thoughts of suicide or dying should be reported to your health care professional right away.

Women who become pregnant while using this medicine may enroll in the North American Antiepileptic Drug Pregnancy Registry by calling 1-888-■■■■■■■■. This registry collects information about the safety of antiepileptic drug use during pregnancy.

What side effects may I notice from receiving this medicine?

Side effects that you should report to your doctor or health care professional as soon as possible:

  • allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
  • changes in vision
  • confusion
  • feeling faint or lightheaded, falls
  • irregular heart beat
  • loss of memory
  • muscle pain, tenderness, or weakness
  • suicidal thoughts or other mood changes
  • tremors
  • unusually weak or tired
  • yellowing of the eyes, skin

Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):

This list may not describe all possible side effects. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

10

Hi Maddy,

For me there is a direct connection between how relaxed I am especially my jaw and the pain. I try to deaden my jaw as much as I can when I drink or eat or brush my teeth. I also warm everything I eat which helps. I thought I had a root problem also as that was what it felt like. It actually was the nurse in my doctor's office who told me to see a dentist, but she apparently knew nothing about TN. I wrote to "Red" on this site and here is my question and his answer:

Hello, I am new to this site but I have been checking it out extensively. I have TN and probably Typical on the right side of my face mainly in my teeth, sometimes in my tongue and other places. Sharp pains at times mainly when eating, talking, or swallowing. My question is, I have suddenly been experience shock-like pain when drinking anything even slightly cold, almost room temperature. Shock-like pain then happens after it. This is an entirely new sensation as cold has not before been a trigger and it happened so suddenly. My doctors office tells me to see my dentist, who a few months ago did extensive work and X-rays on my teeth and saw no problems after finishing. Do you have any ideas? Thank you, Mary

My response: I would speculate that you have developed a new trigger zone in the trigeminal and/or glossopharyngeal nerve distribution. If you had extensive X-rays and work only a few months ago, then I'd think a new dental problem would be relatively unlikely. However, I think it is potentially more important and disturbing that your primary doctor doesn't seen to know that trigger zones tend to come and go with facial pain in the trigeminal disribution. That suggests to me that it might be appropriate to seek a second opinion or perhaps even a better trained doctor. I don't totally discount the role that dental work might have played in the development of your pain in the first place; it just doesn't seem likely to me that the source of this new pain response is dental in character, so much as it is an effect of neurological pain.

Hope this helps! Mary



Maddy said:

Thank you Mary, when the stab of pain hits me, it just gets more intense with each sip.

I was really feeling like maybe I have had a root of a tooth die, it is hitting on a capped tooth.

X-rays don't tell if that if a root is dying. Is that how your's feels. I was trying to determine

if that was the problem. I am trying all kinds of ways to get liquids down, just haven't tried standing on my head yet, lol My problem is on the top teeth, you would think that would be less of a problem. Thanks again for replying to my post. Hang in there

xxOxx

11

Yes Bill, seems like a lot of meds list horrid side effects and it is just a crap shoot that you don't get any of them.

Thank you for your responses and Best of Luck to you.

xxOxx



SF Bill said:

You probably know all this. I don't know anything about Vimpat. I pasted this from Yahoo health. It is the regular list that scares the !@#$ out of everyone.

Lacosamide Oral tablet

What should I watch for while using this medicine?

Visit your doctor or health care professional for regular checks on your progress. This medicine needs careful monitoring.

Wear a medical ID bracelet or chain, and carry a card that describes your disease and details of your medicine and dosage times.

You may get drowsy or dizzy. Do not drive, use machinery, or do anything that needs mental alertness until you know how this medicine affects you. Do not stand or sit up quickly, especially if you are an older patient. This reduces the risk of dizzy or fainting spells. Alcohol may interfere with the effect of this medicine. Avoid alcoholic drinks.

The use of this medicine may increase the chance of suicidal thoughts or actions. Pay special attention to how you are responding while on this medicine. Any worsening of mood, or thoughts of suicide or dying should be reported to your health care professional right away.

Women who become pregnant while using this medicine may enroll in the North American Antiepileptic Drug Pregnancy Registry by calling 1-888-233-2334. This registry collects information about the safety of antiepileptic drug use during pregnancy.

What side effects may I notice from receiving this medicine?

Side effects that you should report to your doctor or health care professional as soon as possible:

  • allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
  • changes in vision
  • confusion
  • feeling faint or lightheaded, falls
  • irregular heart beat
  • loss of memory
  • muscle pain, tenderness, or weakness
  • suicidal thoughts or other mood changes
  • tremors
  • unusually weak or tired
  • yellowing of the eyes, skin

Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):

This list may not describe all possible side effects. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

12

Hey, I am new at this TN business, a had a bout afew years ago in the opthalmic branch, turns out is was a cervicle problem and my chiroprator found the knot . But lets talk about teeth, these days I am experiencing horrible new TN pain is triggered and radiates out from my nostril! Eating, talking drinking but not constant, If I am quiet there is no probelm. I am a dental hygienist and remembered that I have a 17 year old root canal on a premolar on that side, I took an x-ray this week and yes, there is an infection, I am on antibiotics since tuesday evening until the dentist can do the proper treatment to alliviate the infection, and I hope the TN problem is connected. Meanwhile I know I am a teeth clencher at night, and my dentist checked my occlusion, balanced it out and plus I have a night guard (michigan) that I sleep with and the pain is better than it was 2 days ago, meanwhile I refuse for the moment to take the antiepileptic meds, I just cannot believe that nerves do this for no reason. Neurologists believe that the disease cannot be explained but I feel otherwise. How many of us are clenching our teeth ????? And certainly if you have crowns, then you may very well have an infection, tooth nerves can necrose anytime, and even after years of being OK like my root canal, they can flare up again. Plus if we have crowns then some dentist has obviously changed our occlusion and believe me as a professional it is never perfect....Anybody with TN should have the teeth and occlusion thoroughly checked out. The occlusion check is not just tap tap tap, it a check with two different colors of paper, red and green usually, one color is used to check the tap tap tap together, the other is to check the sliding from side to side movement. I suffered for years with a stiff neck upon waking up in the morning and since my Dentist checked and changed my occlusion my teeth are more comfortable and my jaw and neck are relaxed. and obviously the TN is better and I believe it will completely subside. I will let you know. Concentrate on the tooth issue. Do not give up.

13

I am currently going through the same pain. I went to the dentist last week for a regular checkup, however, had some mild shocks, and now I can't event swallow my pills without pain or brush my teeth. It is a horrible feeling. I pray that God would deliver me from this illness. I sing in my church choir and may not be able to make it to rehearsal to finish a CD project that we are working on. I also have not had anything to eat or drink today.

14

I have no idea if this will help but I will try to describe what works for me. I do not back away from the pain. In fact I try not to label it as pain but as a sensation. That may sound a little strange but somehow it makes a difference. Then I decide to just face the pain willingly, almost eagerly. I bite into whatever or drink normally not trying in any way to avoid it. The sharp stab hits. Then I just say to myself - okay I know you are there. I keep eating or drinking and just allow it to be. For me the pain soon does not hurt quite as much maybe because I am tasting the food or drink. I continue and soon the food intake makes me relax a little. Then I take my pills with the same intensity. The pain stabs do keep coming but just getting used to them and not avoiding them makes them less intense. I think the fear must add to the pain and if I feel I am in control and face it squarely the pain is manageable. Anyway, this process has helped me enormously! I now eat normally where before I was blending everything into soups for my meals and dreading eating or drinking anything. I still heat liquids a little so they are not too cold, but I again enjoy eating. If you try this remember that you are not to expect the pain to go away, you are just recognizing that it is not going to control you. I hope this may help even though I am not sure I have really adequately described it. If anyone decides to try this, please let me know! Mary

15

Hi Mari, Have your dentist equilibrate your occlusion,it is a half hour appt, that is if he does this type of denistry not all dentist are in the know. I am lucky to work for one in Switzerland that is excellent. Phone you dentist, if he doesn't do this type of thing ask him if he can refer you to somebody who does, and consider getting a night guard. A night guard clips onto your upper teeth and that too if it is well done will give you much comfort I love sleeping with mine. How is your neck when you wake up in the morning??? If it is stiff, could be a sign of your need to have this checked out. Do not give up. Nerves do not do this for nothing!!! We are not some special breed of animal. Pray that God would lead you to the right dentist. I asked the elders of my church to pray for me last thusday, and today I see that the pain is subsiding!!! But God had to show me what the problem was. There is a problem, a concrete healable problem.

This morning I am not pain free but I think in two more days I will be....amazing, the answer was quite simple really. Certainly some of us are sensitive to this type of pain but there is a cause!!! We are not to accept life like this without searching for the reason.



Mari said:

I am currently going through the same pain. I went to the dentist last week for a regular checkup, however, had some mild shocks, and now I can't event swallow my pills without pain or brush my teeth. It is a horrible feeling. I pray that God would deliver me from this illness. I sing in my church choir and may not be able to make it to rehearsal to finish a CD project that we are working on. I also have not had anything to eat or drink today.

16

Maddy, I don't understand why your neurologist told you not to go to the dentist???? Yes I have pain when drinking, but I drink anyway I tell myself it is only pain.....but it is really unbelievable how awful pain is!!! I do OK if it isn't in my forehead because I find it so much more sensitive there!!

17

muffet - i AGREE with you almost COMLETELTY.

do tired of writinbg but i'll try to explain.

as someone who was A PERFECTLY healthy, cute. nice . 33 yo guy two years ago - i went to the dentist - and all my life destroyed. 2 years of constant pain.

there MUST be a reason for that. i also don't take the meds. i took for 7 monthes - all they did was many decreased the pain in 20% and helped me sleep better. it is nice - but in what price ?

i'm not saying we shouldn't take those meds. it's an horrible situation... but i always keep thinking.. maybe this week. . this time - i'll find a doctor , a dentist who will figure out what my problems.

i DON'T have calssic TN. that's what all dcotors agrre. the pain is constant. besides the pain that sometimes is UNBAREABLE.. i always go with a feeling my "closure" of mouth changed !!! like something wrong on the left side. like it' "lower" or something.

i remever TWO years ago - the teeth could close perfecetly. each teeth on each side touch the one near it.

now - only on the right side it's like that.

the left side - no. not all the teeth touches each other. it's unconviniate. i feel like my face muscles are trying to "cope" with that all the time - so my muslces work all day. also i go with a night guard during the day also !

i also started the last weeks to have SERIOUS neck pains... i can't lie down without neck really started to hurt.. crawling to my jaw.

i have a suspicious it's from the night guard - all day clenching it - cause the neck muslce to work ! i do feel that.

also some dentist said i have old fillings on that side - but none say it can cause this pain or burning . but how could they now.

it's a less good explanation that "atypical facial pain" sorry. i know what i feel in my mouth... it's nothing "theoretical"

i also try to be quiet all day. not to speak much- as it increases the pain.

like every time the teeth open and close - they are not put right and causes the inconvinient.

by the way (And that 's not connected to ANYTHING ! i HATE my mothers reponses like "you should go out more. do walking etc." . so annyoing. only once who have it can understand".

i so sympathize with your answer.

18

Wow Nir, you know what your problem is! Your body is telling you something. I am absolutely positive that it is your occlusion you have classic symptoms. Something interesting to try but you will need someone to assist you . It is probably easiest to do lying on a couch or bed, if more convenient even the floor will do! Someone slightly lifts your legs, they have your ankles in their hands and spread your legs a little wider than shoulder width not too far but far enough. You are not to look at them while doing the test, look up at the ceiling.

The test is a test of your resistance, when your assistant pushes your legs together you must try to prevent them from going together, first test with your mouth open. They are to try to push your two legs together you are to resist them with all your strength. Then repeat the same exercise with your mouth closed. If your teeth are a problem you will not have strength when you mouth is closed!!! Nir you must find a good dentist!!! Another important thing is the night guard must suit you also, so test your strenght with the night guard in place!!! You will wuickly know if it is good for you our not. I do not know how this works but it does! Do not loose hope br /> Nir Morita said:

muffet - i AGREE with you almost COMLETELTY.

do tired of writinbg but i’ll try to explain.

as someone who was A PERFECTLY healthy, cute. nice . 33 yo guy two years ago - i went to the dentist - and all my life destroyed. 2 years of constant pain.

there MUST be a reason for that. i also don’t take the meds. i took for 7 monthes - all they did was many decreased the pain in 20% and helped me sleep better. it is nice - but in what price ?

i’m not saying we shouldn’t take those meds. it’s an horrible situation… but i always keep thinking… maybe this week. . this time - i’ll find a doctor , a dentist who will figure out what my problems.

i DON’T have calssic TN. that’s what all dcotors agrre. the pain is constant. besides the pain that sometimes is UNBAREABLE… i always go with a feeling my “closure” of mouth changed !!! like something wrong on the left side. like it’ “lower” or something.

i remever TWO years ago - the teeth could close perfecetly. each teeth on each side touch the one near it.

now - only on the right side it’s like that.

the left side - no. not all the teeth touches each other. it’s unconviniate. i feel like my face muscles are trying to “cope” with that all the time - so my muslces work all day. also i go with a night guard during the day also !

i also started the last weeks to have SERIOUS neck pains… i can’t lie down without neck really started to hurt… crawling to my jaw.

i have a suspicious it’s from the night guard - all day clenching it - cause the neck muslce to work ! i do feel that.

also some dentist said i have old fillings on that side - but none say it can cause this pain or burning . but how could they now.

it’s a less good explanation that “atypical facial pain” sorry. i know what i feel in my mouth… it’s nothing “theoretical”

i also try to be quiet all day. not to speak much- as it increases the pain.

like every time the teeth open and close - they are not put right and causes the inconvinient.

by the way (And that 's not connected to ANYTHING ! i HATE my mothers reponses like “you should go out more. do walking etc.” . so annyoing. only once who have it can understand".

i so sympathize with your answer.

19

dear Muffet - i DO belive my occlusion is a problem . maybe it is not the MAIN problem - but it became one.

i FEEL my jaws on the left side are not right.

but been to occlusion specilist - didn't help. i have an apoointment to a new one next week . i DO hope i'll have the patient to insist she helps me.

can occlusion problems cause the sore feeling on the "hole of the mouth" and gums from the inside (sorry- my english is not that good).


i suspect that my occlusion is a resuly of the mouth trying to find a "solution" to deal with the pain.

but i don't know if the pain cause the mouth to "deform" or the "deformation caused the pain.

and the docros doesn't seems to care - it's like - they say that anyway - meds are the answer.


i DO feel that when closing my mouth it closes just on my wisdom teeth (or molars, can't really be sure) on the left side. but even if i don't close mouth - the stinging sensation is there. don't know : (


by the way - the most important question - if the occlusion is the problem - what has to be done about this ? only take "hight level" from the teeth ? is that it ?


(i'll try to see about the exercise you told me. i 'll see if i understood you right).