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Does anyone else in your family have TN - or are you the only one?


#81

Hi there,

I am seeing a neurologist about that now. My original neurologist when I
first got TN focused on testing me for Lyme Disease because I was living in
New England at the time and that’s a huge problem there. He never gave me
an MRI or mentioned MS. When I moved back (home) to Oregon this year, my
new GP asked the same question and was shocked to hear I hadn’t been
tested. I had my first MRI in February and there were many small lesions
and one lesion large enough to be MS. I have many other symptoms as well
that I always kind of thought were common things that I have since realized
are not normal. I have another MRI in August to check for more lesions or
perhaps a different cause of the TN, like nerve compression.

However, I am not confident there will be another cause of the TN. I
started with TN2 on the right side, and now I have TN1 and TN2 on both
sides, not at the same time. I also fit every category for being likely to
develop MS, including growing up in the Pacific Northwest, white, female,
and young.

I am seeing an MS Specialist, but he is not great so far. He doesn’t seem
to acknowledge any of the other symptoms I have told him about, and when I
looked up reviews about him I saw that many other people said he was
dismissive as well. I may end up needing a second opinion, but I’m going to
wait until the MRI is done and see what shows up.

I’m sorry to hear you’re developing other neurological symptoms as well. I
hope you get a competent neurologist who will explain everything to you and
also listen. And I hope you get some answers and help to stop the problems
in your legs.

Best,

Jocelyn


#82

I’m sticking to my nerves. Digestion and nutrition are clearly important topics, but – for me – connecting them to TN is a bit like trying to resolve the issues between relativity and quantum mechanics.


#83

I’m sorry to hear that, Jocelyn. I’m certainly with your Oregon doc and am amazed that they didn’t test your for MS straight away. However, the upside is a positive diagnosis of MS is a diagnosis and there are a lot of things you can try to improve the condition. There’s even diets for it, some of which seem to have good results. It’s a much more researched condition than TN and you might make more headway with it than ‘just’ having TN. Best of luck with all your tests and hope you learn something helpful, even if it could never really be described as positive, from them. X


#84

I hear you, Andy. Although the average MRI scan, the baseline for our TN ‘investigation’, turns up about as much useful information as going out and asking a tree. For all we know dancing naked round a fruit tree at full moon would be about as helpful!


#85

Hello, I’d love to think of myself as computer savvy but this site intimidates me. I do not know what I’m doing so I rarely post but sometimes read.
I am sp MVD oct 18th. Since I have not been able to come down on my medications. It’s been hard on me emotionally I must say but I’m still trying to be my bubbly self when I’m not thoroughly exhausted or in pain.
No one in my family has this terribleness. My sister has crohns. I have had past history of optic neuritis, inflammation attacks on my tendons and nerves very painful, and I have pcos. My mris are all clear besides the trigeminal neuralgia which they told me they fixed and separated. I’m not sure why I’m in pain.
Currently trying to trend down on the baclofen and I’m already having medium to massive attacks. Im sorry I’m totally off topic but wow. I guess I just really needed to talk about it to someone who understands.
Today I could not take my head off of my pillow because for some reason my ear same kind of pain it was just triggering it so bad I felt trapped. Lifting my head I had to do it while letting out a yell. I’m feeling upset I’m dealing with this level of pain. And I feel so sorry you are all suffering as well.

Supposed to get sick take medicine and feel better. Not go through this battle of pain. And it’s PAIN!

Also is it possible to be getting trigeminal pains on the opposite side of facebut lower half? I’m at the point that I’m thinking I’m crazy now. But I feel I’ve become very in touch with my head since surgery. :confused: Without sounding like a hypercondriact.

:heart:


#86

Hi Nanooo, I’m sorry to hear you are struggling with so many things at once. I’m in a similar, but not so severe, place right now, in that I have TN pain on one side (fortunately not at full strength) and some kind of unidentified tooth pain at the other side At first my dentist said it was a wisdom tooth, today he’s changed his mind and thinks it’s most likely TN related, which would mean I am developing bilateral (yes, it is possible to develop the pain on both sides). I don’t think I agree with him, but I’m being sent for a 360o x-ray to see if anything shows up. I also have tendonitis (tendonosis, more accurately) in both ankles - we’re obviously twins separated at birth!

I know what you mean about the sickness model we’re all taught, that we go to the docs and they fix us, but as we’ve all learned, painfully, sadly it’s just not true. Half our time is spent just trying to get them to understand our conditions let alone fix them!

I’ve added you into our stats. It’s beginning to make its way back down again, so maybe not so genetic after all?


#87

Yes add me to the stats because I def don’t think it’s genetic lol. And I must say. My neurologist is the best and knew what I was suffering with like immediately. My primary on the other hand, when I said in the phone begging to help me because I have to work, told me if I’m willing to work I’m fine. After he saw I had an MRI done ordered by neuro. He looked at results and told me to not play contact sports and take Tylenol for pain. :triumph: Needless to say he is no longer my primary.


#88

What, no contact sports? Well, you’ll have to give up the American football and the ice hockey then. After all, we all know people with TN are all ex-athletes. Your doctor sounds like the village idiot, God bless him. It scares me they let people like that complete medical school, let alone practice medicine. You’d think at least one teacher might have spotted he was a buffoon!


#89

Everyone swears he’s such a good dr too. So that left me like…:thinking:???


#90

Maybe he was great with feet. It was all your fault for presenting him with a head; you baffled the poor thing!


#91

60 years old. TN 1 for 6 years. No one in my immediate or extended family has TN


#92

I’m more or less the same, Patrice,: 61 years old, no known relatives with the condition (except for one cousin who may have had it or a related condition). I’ve had mine about 4 years, I think. I’ll add you to the 'no’s!


#93

ETA: I can’t seem to get in to edit this any longer, so the current tally as of 6/2/18 8 people out of 23 with one other relative with TN, and one of these with multiple (female) relatives, all with TN. (However, two of the people with a positive family history of TN have unverified anecdotal evidence of ancestors with TN and therefore it is hearsay only). It’s not near half any longer (more like a third) but it’s still higher than it would be in a normal population I think.


#94

I’m the only one with ATN but migraines run rampant through my paternal side… great grandma, grandma, dad, my little brother, his middle daughter.

There’s some theory out there that those who are prone to migraines are more likely to be concussed. My brother has had three concussions that I can recall and my oldest niece has already had two and she just turned 18.

There’s also the idea that the TN plays into migraines. I, personally, haven’t been able to connect the dots between my migraines and my ATN flares yet but that doesn’t mean much.


#95

Yes, TN and migraines are definitely connected. I was told that migraines are a “disorder of the trigeminal nerve”, but I don’t think they know what actually causes the migraines either. The first neurologist I saw was given my case because she was a migraine specialist from Argentina. Ironically, she put me on Lamotrigine, which is used to treat migraines, and it gave me migraines - actually one long one lasting 6 weeks. The worst I ever had in my life other than one I had around 1990 which was so severe I literally couldn’t move a muscle without wanting to vomit. I couldn’t even lift my head off the pillows and had to have the curtains shut and the lights out. I had the flashing lights and everything. I’ve never had one that severe since, thank God. But the Lamotrigine episode came close. She was most peeved that her drug of choice actually caused migraines, like it was my fault!

As regards the concussions, could it be a chicken and egg thing? Are Migraine/TN sufferers more likely to get concussed or has a concussion caused migraines/TN further down the line? When I was a young teenager, about 13, I walked into a lamppost (I know, it’s about ridiculous as sliding on a banana skin!). I had my head bent down (which is why I didn’t see it) and I blacked out for a few seconds. Oddly, I didn’t fall but the pain was catastrophic, vomiting bad. When I got TN I wondered if I’d maybe had an undiagnosed concussion. It would be deeply ironic if further down the line they discovered that migraines/TN were caused by something as basic as a knock on the head!

P.S. I’ll add you in as a no. The figures are shrinking further. We might end up disproving the TN genetic connection after all!


#96

I’ve been hearing more about how migraines in general are a disorder of the TN but with 30 years of migraine and 12 years of ATN behind me I don’t think that’s true.

First if that were true anti seizure meds wouldn’t work as a preventative for certain migraines.

Second they wouldn’t have the same environmental triggers as seizures (flashing lights, smells)

Third migraines are not about pain. It’s the component everyone knows about but in reality migraines are about basic neurological issues (slurring words, memory problems, fatigue, scrambled thoughts). And the issues related to any given migraine vary widely depending on the part of the brain being impacted at any given time.

If migraines were “only” a disorder of the TN then TN/ATN wouldn’t be so rare. Migraine has become a catch phrase for headache, or really almost any head pain, be it muscular (tension headache) or vascular or otherwise (seratonin imbalance). Now there’s a percentage of people trying to push TN/ATN into the migraine category as well. Fundamentally head pain does not equate to migraines.

For many migraine people the checklist used for eplilespy applies to the migraines they experience, although to a lesser extent than a “true” diabilitating seizure. As far as my understanding goes seizures and the TN are not related.

As the song goes “the shin bone connected to the thigh bone and the thigh bone connected to the hip bone…” At the end of the day a problem with one body part impacts other parts but impacting doesn’t mean its actually involved in the root problem.


#97

I’m the opposite, I only discovered that TN and migraines are connected recently - I think on here. Ironic, considering I had a migraine specialist treat me who, much to my annoyance, marked me as having ‘chronic headache’ (I don’t) and a migraine sufferer. It’s caused me no end of bother since with medical proffessionals. However, she didn’t see fit to tell me migraine and TN are disorders of the same nerve!

The points you raise are interesting. Isn’t it possible though that anti-convulsant meds work on migraine (assuming they do; never met anyone who uses them!) because they dull the nerve response in the trigeminal nerve, or nerves in general? Just as they work for TN and epileptic seizures? Also migraine triggers are a bit different from epileptic triggers. Migraine is bright strong light rather than flashing, for example. I’m not conversant enough with epileptic triggers but I don’t think they are triggered by the same things, like dehydration, prolonged noise etc, the way migraines are. I think this could be an example of correlation not causation - they have similarities because they involve the trigeminal nerve but they don’t come from the same causes.

I can only talk about migraines from my point of view and mine are definitely about pain! Generally though they come from other things, yes, like lack of sleep or dehydration, but I find they have to be combined. I have to have lack of sleep combined with prolonged noise or prolonged travel on an overheated bus. Or combined hunger with strong sunlight and excessive exercise (that one will often have thirst thrown in). So I suppose really mine are a combination of physical stressors, which induce headache, which, if it’s not dealt with promptly will become a migraine - particularly if I can’t stop the physical stressors, like being able to get a drink, or having to stay on a bus, for example.

I get the neurological issues you mention (mine would be brain fuzziness - hard not to get that with a splitting headache! - and nausea and fatigue) but after the migraine, or at least as part of it, never before it - that I’m aware of! Maybe I do but the pain is just so overwhelming (although for me the nausea is usually the worst thing) that I don’t notice!

I think although they are both disorders of the trigeminal nerve, they may not be related in any other way, per se. Again, as you say, this could be correlation not causation. You could be right that there is a movement to connect headache with TN, although I suppose as they are both in the head this is bound to happen! But TN is definitely not a headache or a migraine in any shape, manner or form - not unless headaches can last for years!

But you seem to be suggesting you think TN could be connected to seizures? If so, that’s a really interesting idea. Have you found any evidence that supports this, or something about your own experience of ATN that suggests it?

E.T.A I should just add that ALL anti-convulsants cause an increased susceptibility to migraine in me. When I recently started Oxcarbazepine, on a very low dose, I had bad headaches every day for about the first 10 days, and the stiff neck I always get along with them. I know that when I up the dose it will do the same thing, every time. It’s deeply annoying!


#98

Just to clarify, I wasn’t saying TN is connected to seizures, I was saying a particular form of migraine is connected to seizure, not TN. I personally don’t believe migraines are connected directly to the TN system. I believe migraines may stress that system and kick it off, but I don’t believe the TN issues cause migraines. Migraines are too deeply rooted in the brain and have too many neurological factors to be attributed to a nerve system.

I’ve used anti-convulsants for my migraines with great success for 25 years. In fact, it’s the only thing the ever worked for me. I’ve had migraines officially for 30 years but had “headaches” my entire life – about 48 years. I’ve only had ATN for 12 years. Ironcially, as you mentioend, because this category of med works directly on the brain they can cause the very headache/migraine that’s trying to be relieved.

Anti-seizure drugs actually have nothing to do with the TN system. They make the brain less likely to have seizures by altering and reducing the excessive electrical activity (or excitability) of the neurones that normally cause a seizure within the brain. In general anticonvulsants work by calming hyperactivity in the brain in various ways, not by calming nerves.

Which circles me back around to the fact that right now migraine is a catch-diagnosis for pretty much any pain or problem in and around the head. Which is annoying.

Did you ever try depakote? It’s the granddaddy of seizure meds, been around since the 1940’s and usually has very low side effects in the dosages used for migraine.

Sounds like you need to get some zofran in your life as well, that’s a prescription anti-neausea originally developed for chemo patients. It’s fast acting and has very low interaction with other meds. It also comes in a melt tab if you tend to throw up your meds while having a migraine.

I agree with you about the physical stressor causing migraine. One of the best things you can do is stay overhydrated! “If you don’t pee white then it’s not right” is a good motto and a great way to judge your hydration level. Same with sleep. I was advised many years ago that the best thing to do is get up at the same time every day. It didn’t matter when you went to sleep, it only mattered what time you got up – that is, what time the alarm went off. If you can stablize that you can stablize your body’s reaction to it and reduce the odds of a migraine.


#99

Ah, I’ve finally met someone who uses anti-convulsants for migraine! I can only offer you boundless sympathy if you have to use anti-convulsants for them. To me, it wouldn’t be worth the side effects from them. I don’t get many migraines and I assume you have to take the anti-convulsants all the time? That wouldn’t be a good trade-off for me. I’d rather just cover my head in mint oil and stick a hot wheat bag on the back of my neck (the two most effective treatments I’ve found!) I used to use Co-codamol taken with caffeine (just tea/coffee/Coke) very effectively but I had to stop using Co-codamol after I had my gallbladder out (it was causing Sphincter of Oddi spasms; terribly painful and scary) and I’ve become super-super sensitive to caffeine. Now a bar of chocolate will have me shaking and hyperactive for a full 24 hours. And it does terrible things to my sleep.

And odd you should mention the thing about sleep. I’m having the worst trouble in the world right now with it. I’m withdrawing from Nortryptiline, trying to get off it before I up the dose of Oxcarbazepine, and, as is usual for me, it’s giving me far worse withdrawal symptoms than I ever get starting the drug. I don’t know why I’m like this. I still remember the look my doctor gave me when I told him I was having terrible trouble with withdrawal from Carbamazepine. To call him sceptical would be being polite. He looked at me like I was nuts. So much so I thought I was being a drama queen and felt ashamed of myself for making a fuss, until I came off various drugs recently. No, not a drama queen at all - very real. For example, I’d read that nightmares were a side effect with Nortryptiline and I thought, ‘Oh I’m bound to get that.’ Not one, ever, no problems at all. All I’ve had with the antidepressants was a terrible dry mouth, sore gums and constipation. But coming off them? Two nights ago, second night after dropping just 10mg, I was woken three times in the space of half an hour with three different nightmares! I had to put a light on to comfort myself with the last one, convinced my house had ‘evil spirits’. I don’t even vaguely believe in evil spirits! And it’s the same for five days out of every seven (I take a week to drop each tablet because the problems are so off-putting). I get the shakes, an upset gut, even worse constipation, headaches, nightmares, the sweats, hallucinations and terrible depression. I’ll be honest, not a day goes by where I don’t consider just putting up with the pain - this really doesn’t seem worth it.

And thanks very much for the meds’ suggestions. I’m always looking for meds to try to try and maximise the best pain control with the least side effects - I really appreciate the recommendations!


#100

Oh I sympathize with the withdrawals! I was on cymbalta for 4 months but it took 18 months to come off it… sometimes there’s just no telling what will happen.

I have to take a daily preventative for migraines and even with that I average about 2 migraines a month, which equals out to about 7 “migraine days” a month for me, and that’s a good month. I can’t even imagine my life (or lack thereof) without daily preventative therapies! I actually have better luck (knock on wood) controlling and managing the ATN than I do the migraines.