Thought some of you might be able to help, as I am currently suffering rather badly with TN and it's slowly wearing me out.
Im currently on 400mg, having upped the dose yesterday. I saw my GP (I'm from the UK, so its physican for some of you) and he said it could have been caused by Meningitis from 19 years previously (had 4 bouts of Meningitis, 3 times in 1991) OR shingles which I haven't had any symptoms.
My question is, could you get TN after Meningitis, does this occur so many years on?
Am curious if any one who have had Meningitis managed to go on to suffer TN.
I hope that the link works, I just checked, and the article is still posted.
When I was getting my MVD, the NS had to stay in there for 2 hours longer, because he had to unwrap menningeal scarring from around my nerve. He said that it was "shrink wrapped" around it, and cited a previous bout with meningitis, or a very high long fever, as the cause.
This is really helpful, and this will prepare me to ask a list of questions when I see the ear nose throat specialist on the 4th Jan.
Can't believe that I saw two neuro surgeons that didn't come up with that!! It was the ENT doctor who recognised the symptoms as his father suffered from it when the consultant was away. Hopefully I will be seeing the consultant on that date to get more info. I am not sure if it is 100% confirmed, but am on the meds.
Thanks again, will post a bit nearer the time once Ive got all the information.
Alex
PS Forgive me if Im not being very clear, as I am pretty fuzzy at the moment.
I've been knocking around the face pain community for 15 years, and this is the first time I've heard of a connection between meningitis and TN. Given that the inflammation of meningitis can affect the spinal chord up to the base of the brain where the cranial nerves branch off, I'd have to guess it's possible. On the basis of statistics, though, Post Herpetic Neuralgia associated with a flare-up of Shingles is a much more likely cause. And that can happen at any point in your life after you've had chicken pox.
If I may ask, what medication are you taking at a rate of 400 mg per day?
Cranial arachnoiditis is considered to be a very different condition from meningitis, with quite a range of possible causes. It may involve widespread adhesions and lesions on multiple nerves in EITHER the brain or spinal chord. The term is not so much a diagnosis as it is descriptive. The root causes of arachnoiditis are not always known, though physicians speculate that inflammatory conditions such as meningitis may be among them. Also considered to be candidates are trauma due to surgery and chemically induced changes in CNS fluid due to myelogram stains or preservatives incorporated in cortico-steroids used in spinal injections for chronic pain.
Any way you slice it, this disorder can be a bear to treat. If you have it, you might not be considered a good candidate for surgery used in trigeminal neuralgia.
Yes, mine is presumably the result of the meningitis. There were 1 artery and two veins on my nerve that were discovered during my MVD. So final answer as to the cause is somewhat inconclusive, and we may never know for sure. We tried the MVD, it got the shocks down to near nothing, however I am still having a bear of a time with the TN2/Neuropathy.
Bummer is an unnderstatement. So, Alex, it will be very interesting to hear what your doctor says. Please keep us posted :-)
A dose of 400 mg per day is just barely at the lower edge of the therapeutic range for Tegretol, Alex. If you're not getting noticeable pain relief within a couple of weeks, then talk to the prescribing doctor about tapering you up.
Go in Peace and Power,
Red alex said:
Hi,
I'm on Tegretol, and was recently diagnosed in the beginning of November .
Richard A. "Red" Lawhern said:
If I may ask, what medication are you taking at a rate of 400 mg per day?
I have recently spoken the doctor, and it will be tomorrow that I will be upping the dose , so its a gradual process. Still waking up very groggy and zombified.
After presumably the usual rounds of visits to doctors, I have been diagnosed with TN. After insurance sent me around to a total of 4 doctors, they said, one and all, "With your history of childhood meningitis, followed by decades of migraines, TN is to be expected." I did have 3 of them tell me that the onset at this time was accelerated by neurotoxin from a spider bite. Unlike your repeated bouts, I had one episode of meningitis about 45 years ago.
Red, Would it be beneficial for us to get the shingles shot? I have been worried about getting shingles along the TN nerve and how painful that may be. I don't know if our doctors can authorize the shot if we are under the age of 60.
Liz
Richard A. "Red" Lawhern said:
I've been knocking around the face pain community for 15 years, and this is the first time I've heard of a connection between meningitis and TN. Given that the inflammation of meningitis can affect the spinal chord up to the base of the brain where the cranial nerves branch off, I'd have to guess it's possible. On the basis of statistics, though, Post Herpetic Neuralgia associated with a flare-up of Shingles is a much more likely cause. And that can happen at any point in your life after you've had chicken pox.
If I may ask, what medication are you taking at a rate of 400 mg per day?
Yes, it is a proven fact with a lot of research to back it up. I also developed TN after a 2nd bout of meningitis, with a history of encephalitis. There is also a form of meningitis that never goes away and can lay dormant in your body, have you ever been tested for that? (I have worked in healthcare for 15 years)
I was on tegretol max dose for a year which did nothing for my pain, and made me a complete non functioning zombie. It does work for some people and god willing you will be one of them :D
My MVD also took away most of my typical TN. But I still have the atypical pain. And I only developed the atypical pain about 4 months before I had surgery. I wished I had had surgery earlier. And I was attempting to get into the neurosurgeon but my neurologist was against having the surgery. My advice to everyone is to see a surgeon so that one knows all his options should the pain increase. I had very little pain for 3 l/2 yrs until it suddenly became worse. But I recently have had some good results with klonopin. I am not totally free from the shocks but doing a lot better. But as we know every day is a different day. And some days the shocks get me. I’ve had more the last few days and I’ve had a lot of rest. Maybe klonopin will help your TN2. I don’t know what drugs you have tried.
Lily said:
Richard,
Yes, mine is presumably the result of the meningitis. There were 1 artery and two veins on my nerve that were discovered during my MVD. So final answer as to the cause is somewhat inconclusive, and we may never know for sure. We tried the MVD, it got the shocks down to near nothing, however I am still having a bear of a time with the TN2/Neuropathy.
Bummer is an unnderstatement. So, Alex, it will be very interesting to hear what your doctor says. Please keep us posted :-)
I have had a look at the research papers, and I also work in the health sector as a Biomedical Scientist. Thought I'd clear this up a little, I have had 3 bouts of Pneumococcal Meningitis and one viral.
I have had chicken pox when I was 5.
I have suffered from headaches for years and years after my last bout of Meningitis.
Could Rebecca please clarify which type of Meningitis that lays dormant - is it chronic basal meningitis / tuberculous.
From when it all started last September 2010, I was suffering from photophobia, stiff neck, head felt it was going to be crushed or to explode due to pressure, ear felt wet and slushy. I have had several CT scans but couldn't have MRI due to my cochlear implant. The scans were inconclusive and had reflections from the implant. I have had a lumbar puncture which came back all negative. My pressure was at 15 (mls?) but the maximum limit was 20.
Unfortunately I was in the Neurology ward for two weeks and they were absolutely flummoxed so they passed me to the Ear Nose Throat which they came up with "Unexplained pressure pains" which I wasn't happy with. I decided to take the matter into my hands and saw another ENT specialist at other hospital which they had my old notes from when I had Meningitis. It was when they came up with TN because this junior doctor or Registrar recognised the symptoms that his father suffered from. My mum and I came away rather shocked because we didnt have enough time to ask questions.
Im on 600mg now, slowly increasing it every week. It has eased the nerve pain but not at 100% and it is a huge difference from last September. Im due to see the ENT specialist on the 4th of Jan, and would appreciate for your advice re questions or anything else.
Thank you for your replies, you have given me some ideas of where to look up.
rebecca ryan said:
Yes, it is a proven fact with a lot of research to back it up. I also developed TN after a 2nd bout of meningitis, with a history of encephalitis. There is also a form of meningitis that never goes away and can lay dormant in your body, have you ever been tested for that? (I have worked in healthcare for 15 years)
Sorry to be so long getting back to you. We're on the road on the opposite coast of the US versus usual. Spent a pleasant Christmas with my daughter and her family and with my wife's just-turned-90 aunt.
Concerning the Herpes "shot", you could be referring tlo either of two things, neither of which is administered directly into the face or near the trigeminal nerve itself. There is an innoculation against Chicken Pox if you've never had it. And there is an anti-viral shot intended to knock the Herpes virus which produces Chicken Pox back into remission, after and if it has come roaring back at you as a case of Shingles. The latter shot, from what I've read, is generally most effective in quite recent cases of Shingles, where there is clear confirmation of the disorder via a visible external rash. Unfortunately, it's less effective when the rash has persisted for a while, or when it never manifests as an external reddening or eruption on the skin.
Again from what I've read, helping to reduce the pain of Shingles is one of the off-label uses for the medication Neurontin (primary use as an anti-seizure agent). I doubt that a physician would give you an innoculation OR an anti-viral shot unless you have been positively confirmed with Shingles.
If others in the forum have contradictory or more recent references to offer on either of these shots, I invite them to weigh in and correct any errors I have made. As always, be aware that I am a moderately well read layman who has advocated for facial pain patients for about 15 years and spent a lot of time with my head down in the literature. But as this thread well illustrates, none of us knows it all or has "the" solutions for this class of neurological disorders...
Red, Would it be beneficial for us to get the shingles shot? I have been worried about getting shingles along the TN nerve and how painful that may be. I don't know if our doctors can authorize the shot if we are under the age of 60. Liz