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Trigeminal Neuralgia resolving on its own?

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Old 11-24-2013, 06:12 PM   #21
Vowel Lady
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I used Soma for a short time for the TMJ on the one side and PT, also for a short time. the TMJ discomfort on the left side is now gone. But that darn ATN pain on the right side is still there loud and clear. If I miss a dosage of my cream, sleep on that side or get a cool breeze on that side....whamm-o...lots of bad pain. But, the Desipramine pills and the compounded cream have kept the pain more tolerable. I have something stronger for breakthrough pain, but try hard not to use it.
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Old 11-28-2013, 09:34 AM   #22
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Hi, are you still having problems with your jaw. I am the same age as you and have the exact same problems. Let me know


QUOTE=cloudsnapper;967770]I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks![/QUOTE]
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Old 12-01-2013, 01:36 PM   #23
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Quote:
Originally Posted by Yawn View Post
Hi, are you still having problems with your jaw. I am the same age as you and have the exact same problems. Let me know


QUOTE=cloudsnapper;967770]I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks!
[/QUOTE]

.....

My TMJ pain on left side is gone. I had some clicking and soreness and was treated by a special dentist. Jaw is ok, esp. on left side.

My ATN (trigeminal nerve ) pain on right side is still there; treated by a good neuro....now more manageable. That pain is hideous when active. I had two MRIs and an MRA. I had at least one MRI with contrast.
However, the Desipramine tablets I take plus the specially formulated cream I use 4-5 x a day, keeps the pain reasonably manageable.
Two separate things....my right side is clearly the nerve pain. $@&#
I was fortunate in that the neuro who treats my ATN pain was willing to talk with a compounding pharmacist....that special cream plus the Desipramine tablets helps me.m I have strong meds for breakthrough pain, but I try hard to very rarely take this medication.
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Old 02-09-2014, 08:06 PM   #24
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I think the diagnosis of TMJ is widely overused. It seems if a dentist or ENT can't find a physical cause for pain they use this term.
I was told I had TMJ before I was diagnosed with TN.

Quote:
Originally Posted by cloudsnapper View Post
So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates It would be cool to be able to breathe through my nose, though!
I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy.
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Old 02-14-2014, 10:51 PM   #25
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J. Jane, I couldn't agree with you more. I went to an ENT, who told me my pain from outter space .... Meaning it was over the top, was probably TMJ. When I told him that two of the top neuros in town think it is ATN likely caused by dental work, he back tracked super fast. Plus, I don't think the meds I was /am on would help TMJ!

Oddly, later, I got some TMJ on the opposite side and I took Soma briefly and some PT. it was just clicking and mild to moderate pain. Did not last all that long and certainly cold breezes didn't bother it. But a cold breeze really bothers the ATN side!

I personally believe a MRI and maybe an MRA are important.

I think many with TN can have corrective surgery.

And those of us with ATN through trial and error can find good meds to work with. My cream seems to work better and better over time. And I have something for breakthrough pain, so I don't feel as frightened.

you might try. www.livingwithtn.org
I got great info and ideas there!
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Old 10-26-2016, 11:56 AM   #26
Rene Neyrey
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Default TN went away for years, now it's back

Hi, I'm new to this forum as of today. From about age 50 to 55 I had TN with severs attacks about once a day, usually at night. I saw a neurologist who tried me on all kinds of pills with no success. I was also seeing a psychiatrist for depression. One day he prescribed me Wellbutrin. A little while after the TN went away. The psych said that might be due to the Wellbutrin since it can help circadian rhythm which he said can be tied to TN. Years went by with no TN. That psych went away and I got a new one. She had me cut down on the Wellbutrin from 450 to 300 because she was trying me on a new antidepresant 'cause the Wellbutrin wasn't working well. In about 2 weeks, the TN came back. So I immediately went back to 450 of Wellbutrin. It's been 3 weeks and no change: having 1 to 3 TN attacks per day. The new antidepressant she put me on was Trintellix and I can find no correlation of Trintellix and TN. Also my urologist started me on Rapaflo about 3 weeks ago due to enlarged prostate and commensurate urinating problems.
I'm trying to figure out why my TN came back with a vengeance.
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Old 10-30-2016, 05:11 PM   #27
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I don't have much to add except that there are many things that may help, so keep looking for medications and surgeries that may help. You might want to go to the website for the Trigemial Neuralgia Association (google it) for information about various treatments and research that may yield more help in the future. I hope you find some relief!!!
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Old 11-04-2016, 06:39 PM   #28
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Quote:
Originally Posted by Rene Neyrey View Post
Hi, I'm new to this forum as of today. From about age 50 to 55 I had TN with severs attacks about once a day, usually at night. I saw a neurologist who tried me on all kinds of pills with no success. I was also seeing a psychiatrist for depression. One day he prescribed me Wellbutrin. A little while after the TN went away. The psych said that might be due to the Wellbutrin since it can help circadian rhythm which he said can be tied to TN. Years went by with no TN. That psych went away and I got a new one. She had me cut down on the Wellbutrin from 450 to 300 because she was trying me on a new antidepresant 'cause the Wellbutrin wasn't working well. In about 2 weeks, the TN came back. So I immediately went back to 450 of Wellbutrin. It's been 3 weeks and no change: having 1 to 3 TN attacks per day. The new antidepressant she put me on was Trintellix and I can find no correlation of Trintellix and TN. Also my urologist started me on Rapaflo about 3 weeks ago due to enlarged prostate and commensurate urinating problems.
I'm trying to figure out why my TN came back with a vengeance.
Hello Rene....

From what I am reading, it sounds like you have typical TN? That's the type that has random SHARP ELECTRICAL pains shooting thru the side of your face, lips, tongue etc... Mine was on the right side. I could actually feel the nerve getting hyperactive (tingling) a few seconds before and after an attack. My pain level was off the charts during an attack and the longest one I had was about 30 seconds which doesn't sound like a long time but it is.

I'm male and I had my first attack right after I turned 56. (TN is more common in women than men) The attacks were so severe and random that I had to quit driving and working. After a year of trying a whole bunch of meds with no success, (I was a walking zombie) my neuro referred me to a neuro surgeon. During my first visit with them, they went thru the list of meds I was taking and said that if the meds were not working, I needed surgery. I had MVD surgery 2 weeks later and it changed my life. (I had attempted suicide during that god awful year) Surgery changed my life back to where it was before I started having the attacks. It was so nice to no longer have to take any meds and be back to a normal human being with a normal life. That was 6 years ago.

My TN was caused by a blood vessel that runs parallel to the TN nerve that had worn thru the protective outer layer of the nerve. This did not show up on the MRI but the surgeon said that's not unusual. Every time the blood vessel touched the nerve BAM I would have an attack. Normal time for MVD surgery is roughly about 2 hours but I was in surgery for 6 hours. Surgeon stated that there were multiple blood vessels "tangled" (his word) up with the nerve. Having the MVD surgery is one of the best things I've ever done. I did have high blood pressure for about 20 years prior to surgery and they thought that might have contributed to the problem. (rubbing the nerve) I faithfully keep my blood pressure under control now.

That was 6 years ago and I'm still attack free.....

What frustrated me the most was the lack of knowledge that doctors have about TN. I even had an ER doctor ask me what TN was! Not that they can do anything for you except fill you up with pain medicine. I don't know how many times I was in the ER over the year before surgery. I went thru many doctors until I found one that actually knew what he was talking about.

Keep your chin up and don't give up until you get the help you need. It is out there somewhere.

Ken
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Old 04-22-2017, 01:07 AM   #29
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Quote:
Originally Posted by cloudsnapper View Post
I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks!
Hello,

I first started experiencing TN when I was a junior in college at age 22. I thought it was due to my wisdom teeth because the pain would always start in my jaw and radiate upwards through my temple and forehead, but it was only on my left side. After getting my wisdom teeth removed, the pain went away, but after a year and a half, the pain came back for 3-4 weeks and went away. The attacks were severe and came and went no matter what I did. I'm 26 now and have been experiencing the same attacks for the last 3-4 weeks which is usually how long it lasts before going away again. The reason for my reply is that I was told that it would never go away and the relapse times would only get shorter for me. Right now, I can manage the pain through medication, but I fear I'll eventually have to look at surgery for it.
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