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Living With Facial Pain

TN combined with MS?

#1

Hi everyone,

I had an MVD on 12 December 2016, which was very successful for my type 1 TN. However, I am still left with constant pain in my temple area, underneath my eye and in my upper teeth. I also have stabbing pain inside my ear. My neurosurgeon thinks I may also have type 2 TN.

I have just found out that my neurosurgeon has ordered an MRI scan of the brain and the whole spine with gadolinium for me to check for MS!

I called to make an appointment for the scan and was told I will need to fast for six hours beforehand and that the scan itself will take an hour and a half. Great.

I already knew I needed another MRI scan after describing some worrying symptoms to my doctor but I had no idea he was thinking it could be MS…

Symptoms:

  • double/blurred vision
  • muscle weakness and pain in arms and legs
  • dizziness
  • nocturnal seizures
  • tingling in hands
  • extreme fatigue
  • hearing problems (I did have CSF otorrhea and a perforated eardrum right after the procedure)

I do remember him talking about ‘demyelination’, but I thought it meant damage to the myelin sheath that protects the trigeminal nerve or something.

Have any of you been diagnosed with MS after their MVD or during their TN journey?

TIA

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#2

Those are very worrisome symptoms, and I think he’s absolutely doing the right thing to have you go through those in-depth MRI scans. Sorry to hear this, and please keep us posted on how your results come out, hoping for the best! From my understanding, TN can often be one of the first ways that MS manifests itself.

Yes, MS is demyelination, exactly how you describe it, but in multiple places, apparently caused by the immune system attacking the nervous system.

I’m reading a book called The Wahl’s Protocol right now, and I think it is a great book. If I had MS, there is no doubt I would go whole hog into that protocol. I’m going to be implementing a lot of the ideas soon, just not sure I’m ready to do all the drastic diet changes required yet.

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#3

Thanks for the book suggestion. I just took a quick look at it on Amazon, and ordered it for my niece who has had MS since her mid 20’s (she is now 39…yikes). I worry that she will develop TN, in addition to all her other symptoms. She lives in Texas (worst environment for someone with MS) and is all alone. No family left and no significant other. I live in Oregon and keep trying to get her to move here…but she is afraid of change…sigh. One of the first things they tested me for was MS…but I am negative. I do find it interesting that the two are related and that there is a possible genetic component. (she is my brother’s daughter).

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#4

Hi Lilli,
I have MS and and TN. My md hais been pretty and until now. Originally I thought TN was a symptom of MS. But now I have been told TN is a separate disease and not my ms?
Some of your symptoms sound like my symptoms which I’ve just gotten since I have been taking gabapentin. Dizziness weakness blurry vision double vision which I never had before . I blame it on the medication I’m taking for TN!
Even so I think you should get the test to determine if you have MS. There are disease modifying drugs which of been very successful for treating for MS. Which you might consider once you have a diagnosis.
I have never had the MVD surgery. But I am considering rhizotomy balloon treatment or Gamma knife 4 the TN,
If you want more information from me let me know. Best to you, Wendy
PS. I’m going to check out wahls protocol too.

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#5

Thanks for your reply, ziggy.
I will definitely keep you posted on the outcome of the MRI scan, which I have now booked. And I am going to try and track down that book you’ve mentioned. Is it available on Amazon?

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#6

Thanks, Wendy!
I think it’s still good to have it all tested and to wait and see what happens when I get off all the medication.
I am also having some other issues at the moment about which I will post elsewhere on this forum (CSF leak has returned/never stopped!).
When will this ever end?
Take care.

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#7

Hi lilli,
for me my first episode of TN led to the diagnose of MS a couple of years ago .

After the last MRI scan I had , the radiologist and neurologist came to the conclusion that MS is obviously causing my TN .

Good luck

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#8

My sister has TN caused by her MS. She had radio surgery in June and is doing well. Every now and them a mild episode but
not the excruciating pain she was in. She is now experiencing nausea and dizziness. I know the motion nerve is located right next to the T nerve but don’t know if her nausea could be caused by the TN maybe crossing over the T nerve. Anyone have info on this problem?

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#9

I 'm also experiencing nausea and dizziness but if I more or less take care with movements ( I can not tilt my head to the back = watch the sky ) it 's not that bad .

I think my neurologist said that the TN and the dizziness are caused by MS lesion(s) in the same region of the brain .

Since I’m on Tegetrol my excruciating pain I was in for three weeks while on Lyrica stopped .

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#10

I am not having shocks right now but i am on a lot of medicine and living in a fog. I am hoping my Dr. will try to start having me reduce my medicine again.

This sucks but I have to remain hopeful. I least I haven’t had shocks lately?

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#11

I am glad you are getting a break from the shocks.It just seems we can’t have it all.That is not true-some people get better.
Hoping the dizziness stops soon.

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#12

I was seeing a neurologist for my TN pain b/c it had become much more painful and lasted longer than ever before. While there, I had a basic MRI for diagnosing whether the blood vessel was resting on my nerve. I didn’t fast or anything. The radiologist who read that MRI found markers for MS in the MRI. I was then scheduled for a spinal puncture to add to the MRI images to diagnose the possibility of MS. It still wasn’t definite. Then I went to an MS specialist who ordered additional MRIs for which I had to drink 48oz of water the day before and another 24oz the morning of (I think–can’t remember now, it was months ago). That last round of MRIs is what lead the MS specialist to diagnose me with a high-risk potential of developing MS. Then I had an episode where my TN pain was acute and my face (on the same side as my TN pain) went numb. That, coupled with the TN pain) was what the MS neuro needed to finally diagnose me with MS. At that point my TN was considered part of the symptoms leading to MS. I was given 5 days of high-dose steroids to counteract the numbness–and they thought, the TN, but that didn’t work. I then had an infusion of pain meds and other things to try to stop the TN pain, but that didn’t work, either. My pain has been so severe lately that they’re sending me to another neurologist to be evaluated for the Gamma Knife, but that has nothing to do with the MS.

I don’t have any of the MS symptoms you listed in your post other than the face numbness and slight numbness in my hand, but the indicators in my MRI and lumbar puncture, combined with my TN and numbness, are apparently enough to say I have MS.

All I care about right now is getting this pain under control because I can’t think about anything else right now. I hurt and just want to curl up in a ball or cut my head off.

Sorry–that turned into more about me & my pain than I intended.

But I wanted to let you know that some diagnoses can be made without major MS symptoms.

Good luck!

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#13

How old are you? If you are fairly young, there is an increased chance that your TN is due to MS. I am 31 and was diagnosed with TN when I was 28. My neurologist at the time was concerned about Lyme Disease because I was living in New England, and never gave me an MRI to test for MS. I later found out this was a huge mistake on his part.

I moved back to Oregon (where I grew up) and got a new GP, who asked right away if I had had an MRI to look for MS. She ordered one immediately. I had lots of small lesions and one large enough to be MS. I have another MRI scheduled for 6 months later to look for other possible causes of the TN (compressed nerve) or other new MS lesions.

I am assuming I have MS because I am a young white woman who grew up in the Pacific Northwest (very little sun/vitamin D), who has TN.

Now about my TN… I was first diagnosed when I had an intense attack of atypical TN (TN2). It was the most excruciating pain… I didn’t know anything could be that painful. It was constant - I couldn’t eat, think, or sleep for days. It was on my right side in my lower and upper jaw, jaw joint area, and up on the side of my head above my ear. After 5 days, I was on the verge of suicide before I finally got diagnosed and got some anti-convulsants. Carbamazepine gave me sores in my mouth and a tingly numb tongue, so I switched to gabapentin. It went away!

A couple weeks later I started to get the same symptoms on my left side, which is unusual. I took gabapentin and they went away.

Then for over a year, I felt almost nothing. Now and then I had a little twinge and I would just take a gabapentin and it would go away.

For the last few weeks, however, it has come back in an odd way. I am now getting the “typical” TN1 stabbing pains. First on my left side last week, and now on my right side. They are more around the temple/ear area, and the gabapentin does not seem to help at all.

So that was long. To wrap it up, I have both TN1 and TN2 on both sides. Other possible MS symptoms I have include pins and needles stabbing sensation, ocular eye pain, severe fatigue, bouts of hypersensitive skin, bladder disfunction (sometimes hard to empty bladder, sometimes urgently need to go all the time), and bouts of dizziness with ringing in my ears. Somehow I thought these were just normal things many people experience. Apparently not.

I really don’t want to have a spinal puncture because I have heard it can be so awful for some people and I am just unlucky with those kinds of things!

I’d love to hear your results.

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#14

Sorry for the late reply, I have four kids!
So I underwent some further tests and, as it turns out, my TN is caused by demyelination, so, yep, MS.
I am 42 years old.
Not going very well atm.
I ended up in hospital for ten days in June, which is where they started thinking in the direction of MS again.
They tried all sorts of infusions on me, without any success.
I went to see my neurosurgeon again this morning and he has just booked me in for balloon compression surgery!
Fingers crossed it will give me some relief before Christmas!
I am currently taking Lamotrigine, Keppra and Tegretol (despite suffering a sudden drop in sodium levels a couple of months ago) and have a lot of side effects. I was on Dilantin before that, after my hospital stay, which was even worse…

That’s it for now.

Wish me luck!

Take care.

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#15

I’m sorry to hear it is MS and hope the balloon surgery gives you some relief! I had another MRI which showed no change in lesions, so they did not diagnose me with MS. At this point I am just a bundle of symptoms with no diagnoses. It also didn’t show any other reason for the TN like a compressed nerve or tumor (thank goodness), so that’s just mysterious. Can I ask how they knew yours was due to demyelination? What test told them that?

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#16

In my humble opinion, MS and TN are symptoms not diseases. I have both diagnosis’. Dispite old school beliefs that the brain and nerves are protected from bacteria by the blood brain barrier, there ARE bacteria that can cross it. Lyme is one of them. Symptoms of MS, TN, Lupus, Fibromyalgia and many other auto immune ‘diseases’ are similar to Lyme symptoms.

My MS was diagnosed over 30 yrs ago. Lyme test was refused to me due to MS diagnosis for many years. TN came on block busters around menopause (20 yrs later) along with losing a good percent of my leg mobility. Finally, a naturopath Dr referred me to LLMD. My LLMD (Lyme Literate MD) told me the fluxuation of hormones is a common trigger for Lyme to act up. He also told me that 90+% of his patients who came in with an MS diagnosis had Lyme.

Once we figure out what causes demylination and stop it, the next adventure is to find out how to REmylinate. There are herbs, just need to research them. I’m not totally there due to Lyme brain and TN pain but am determined. Keep finding sticky notes around my desk in my handwriting with interesting stuff on them.
Be well and Smile often. (in between)
Redbekia

In addition to this message: Just found my notes on remylination. There are several things that help: Nettle leaf, Oat straw and oats. Made a tea with 1 T nettle leaf, 1 T oat straw and a little Stevia for sweetness. This makes a quart of tea. It’s delicious cold too. Then just eat oatmeal for breakfast (or snack) or make oatmeal cookies or oat muffins, etc. to get your oats in. Food as medicine is so much more fun than the alternative.

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#17

Just to play devil’s advocate – TN isn’t always a symptom of a disease, often it’s the result of injury and therefore can’t be “cured” or “stopped” and must be supported through the healing process. And it may or may not be demylination, although that’s the current theory. It could be the nerve being pinched, swelling, any number of things we simply don’t understand.

The problem is the healing of nerves isn’t understood. Additionally, the nerve could be injured repeatedly, in my case via neurologically complicated migraines, so it never really heals.

That’s why proper support via medication and a good doctor is so important.

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#18

Thank you for your information!

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#19

Hello there! Today is April 7, 2019. I don’t get to visit here very often. I stopped in today and saw your question and just HAD to answer! You see, I have had multiple sclerosis since forever, diagnosed in 1992 after going blind, and showing symptoms back as far as 1977. In 2012 I started having TN symptoms, after all those years of having MS. For whatever reason, many people with MS develop trigeminal neuralgia. The facial pain has been far more crippling than the MS. Fortunately for me, my neurologists tried the basic treatments with Tegretol and then Trileptal, and they have worked like a charm. These anti-seizure meds have side effects of their own, but I’ll take whatever these medications give me because the pain is just too horrible to bear. I guess that doesn’t sound very reassuring, does it? Let me say just don’t be afraid of MS. Most of us can function within normal limits. It’s really annoying, and I can’t be athletic like I once was. But I just now came in from jump-starting the lawn mower with my truck and priming the fuel pump because the engine wasn’t drawing gasoline, then mowing the huge back yard, taking three ottomans that I bought today into the garage, and am taking a break before I shower and feed the dogs. Anyway, my life has been the reverse of your question, I developed TN during my MS journey. Just don’t be afraid.

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#20

I was diagnosed with MS after having TN episodes. I have Type 1 (Typical) TN.

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