Practitioners don't know what to do

General
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Hello,

Long story short, I was involved in a car accident, which led to being diagnosed with trigeminal neuropathy after having spent 4,000 dollars in dental surgeries, sought out six dentists, two endodontists and one maxiofacial oral surgeons.

I started on 10 mg of nortriptyline and began seeing an oral facial specialist (chiropracter). After i stopped seeing the chiropractor, i realized a lot of the pain was due to her touching my face. I am now on 50 mg of nortriptyline, and I’m feeling hopeless. It’s like the pain keeps breaking through the medication, and I’m starting to get really nervous.

My family doctor doesn’t want to try new medication. The neurologist doesn’t know how to help me (he said this himself.) My dentist doesn’t want to extract my teeth and the endodontist doesn’t want to do a root canal treatments. I feel so helpless. It’s like they’re all waiting for this to go away, but they don’t realize how much pain I’m in. I’ve tried looking for help in the USA, but I can’t afford the outrageous fees.

I’m feeling so hopeless. How did you guys make it past/surviving all this pain and uncertainty.

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I was diagnosed with trigeminal neuralgia (TN) approximately 16 years ago at the age of 50. I initially thought the pain I was experiencing was from a tooth and went to my dentist several time for him to check the tooth. Each time he examined me and told me nothing was wrong with the tooth. I finally told him it hurt even if I very lightly touched my skin above my lip. Then a light bulb went off for my dentist, and he told me I probably have TN. My dentist referred me to a neurologist. My neurologist confirmed the diagnosis. I tried numerous therapies and medications throughout the years.
Approximately 7 years ago, I decided to have microvascular decompression (MVD) surgery Nothing was working anymore, and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL.
My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free and I still am today. My only regret was that I did not pursue surgery years earlier. The surgery gave me back my life. I am forever grateful to Dr. Sekula and his team.
I wish you well and hope you find the therapies, medications or procedures to assist you with TN.
Please Note: Dr. Raymond Sekula is now in New York at Columbia, Neurological Institute of New York.

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Hey Cathieebee,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.

TN has been one of my many differing diagnoses and like you, I too was involved in an MVA. The MVA occurred when I was about 4 and although I was informing others of an issue, it wasn’t identified. Over the years I’ve been given all sorts of what I call pseudo diagnosis ie ‘It could be ‘X’…’ or ‘It could be ‘Y’…’ but nothing confirmed. It was easier to simply label me “A S%#T of a kid” (and I certainly lived up to that label :wink: ) than to actually investigate.

Some 20+yrs later a possible cause was identified. I was driving down the road and suddenly I couldn’t see. This made them investigate a bit more. They found a growth in my brain and operated on it. Post surgery, well, somethings improved, but then somethings didn’t and I had some new weird and wonderful (NOT) side effects. I was sent to all sorts of medical professionals. In the surgeon’s view, ‘I operated, I fixed’, but this is far from fixed. But any issue was not to do with him. So I went looking for answer and when they could not give me a confirmed diagnosis, they came out with Trigeminal Neuralgia and ‘Nerve Pain’. I hate that term nerve pain personally, because all pain is nerve pain.

The trigeminal nerve is the 5th cranial nerve and it branches out over the whole skull. It separates up into 3 branches, the ophthalmic nerve, the maxillary nerve and the mandibular nerve. Pressure or irritation to any of these nerves can cause pain anywhere along the nerve tree. For example, I get some absolutely wicked headaches behind my eyes, but the surgeon insists he went nowhere near those regions. I saw an independent neurologist and he suggested ‘neuralgia’. He tried repeated treatments of Botox, but without success. He got annoyed when the Botox wasn’t the ‘miracle cure’ treatment he had promised. Over the years I’ve required a few neurosurgeries and the idea that my trigeminal nerve has not been damaged in the process would be impossible and this ‘could’ be the source. But nobody could give me a ‘Yes/No’ answer on that. It’s all could be’s or possibly or probabilities.

I was trialled on all sorts of medications. Migraine meds, Heart meds, epilepsy meds, psych meds etc I was up, I was down, hell, I was even sideways and some of the side effects were just nasty. I was sent to all sorts of dr’s all of whom had a differing diagnosis or a differing treatment plan, I trialled them all, but none of them were my ‘key’.

For me, I think part of the problem was that they were treating a symptom, but not the cause. So all of the medications were more of a mask than a treatment. The ‘nerve pain’ meds sent my whole system for a spin. Just horrible. I now avoid them. I know what works for me, a lower dose opiate. I can regulate my own use and maintain it fairly well. I have some high dose opiates here as well, but if I need to take them, I need a bed too, because those things wipe me out. If I’m still in pain, I need a hospital.

Now, I see you’re in Canada and believe that you also have access to medicinal cannabis. I’m in Australia and we too have ‘some’ medical access. I am not advocating it’s use but rather stating that I have found it beneficial. Some people report a painkilling effect, but it’s not so much a painkiller. For me, my pain is front and centre in my mind most of the time. With cannabis I find I can function outside of my pain. Sort of move it to one side, rather than have it front and centre all of the time. I’ve also found it helps lessen my use of opiates, which is also good thing.

How do I cope? The best way I can, for me. If that with meds, that’s what I use. If it’s with rest, that’s what I do. If that’s hibernating in a dark silent room, that’s what I do. And if it needs to be a combination of all of these… …I do that too. In my view, I have to manage this for ME. Not anybody else. Others may have an opinion (many do), I don’t care. This is about me, not them. I’ve offered all of this to anybody who wants it, but sadly had no one willing to take it all on :disappointed_face: I don’t want it either, but here I am… So now I have to manage the best way I can for me.

Merl from the Modsupport Team

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I hope you find relief someday!

It’s really a day to day issue for me. I was in a car accident and because I’m low income (living paycheck to paycheck) i was only able to take one week off work after being hit by a car.

I’ve tried weed in the past, and it was a horrible experience each time. With the current medication I’m taking, I experience irregular heart beats so if i were to take an edible or smoke I’d be having a panic attack.

I think in this moment, I just need rest. I haven’t had time to take care of myself becuase I’m in the middle of a lawsuit. I’m taking care of a dog who was also with me during the car accident and working full time. I don’t know how people who have chronic pain manage to lead successful lives because the added stress can make the pain worse.

I’m hoping to have some break from work sometime in the next couple weeks. I have my MRI scheduled in July. There is so much uncertainty, especially since receiving my blood results and they were less than stellar.

Wishing you the best.

Catherine

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I attempted to book an appointment with Dr. Raymond F. Sekula, and it costs almost $2,000 just to see him.

I’m saving up some money so I can see him around this time.

Thank you for the recommendation though!

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I had a similar experience ( many drs ,numerous procedures that weren’t helping the pain) and finally was diagnosed correctly. Medications were helpful to a point. My neurosurgeon was Abhay Sanan in Tucson Az ( lucky where I lived) and have been pain free after 2 MVD’s for 12 + years. I found him through the facial pain association, perhaps look at their website. Truly thankful for his expertise, genuine concern and patience.
By the way he didn’t do the 1st procedure that lasted 3+ years.. but was not a reflection of the 1st drs work. Dr Sanan is more of an expert on TN.
Hope this was helpful and truly felt that this site was very helpful to me.

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Hi. I’m sorry to hear about your pain and dental work.
I too, had extensive work done. Also had Gamma Knife Radiological Surgery. Or GKRS.
That worked for about three years… then the pain came back. So for 4 years I tried various different meds.finally found one that worked .
Been pain free for ten years.
Best wishes to you. I hope better days come your way.
Min

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Oh, I’ve been there!! My first attack I was sure was dental related. I went to many dentists, maxiofacial pain docs, and endodontists, too, be glad they aren’t taking your teeth—a couple of mine did. No help. At all. My first “attack” lasted four months, straight. Then poof, gone. Like a bad nightmare. It came back a few years later and this time is was bilateral (tag teaming, though, thankfully) .. I went to a diagnostic neurologist who sorted it out. Here is the thing, Type 2 doesn’t react to that kind of meds…do you have hemifacial spasms, too? I take a “cocktail” of meds that allow me to have a little life..but it isn’t easy, ever. The best advice I got was find a pain specialist and stick with them…also find a pain therapist, also helpful…many people shoot for cured and pain free, that isn’t my reality..I shoot for a 3-4 on my pain scale and call that a win. The things you can do to “calm nerves” also help..meditation, not talking, drinking through a straw, not touching your face or letting anyone else…protect your face from wind, too…everyone has something odd that helps them, mine is if it is on the right side I can have someone push hard at the base of my skull and that can relieve it a little..anti inflammatory diet…no loud noises, even noise pollution effects it…I’m so sorry..it is truly awful…I first had it 16 years ago..had three years of nothing then it came back 13 or so years ago and hasn’t left…I was 37, the first time. Keep advocating for yourself and insist on meds that work for both types! I’ve heard good things about cannabis, but it isn’t legal in my state.

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It took me a long, long time to accept that ‘cured’ wasn’t going to happen. I went to dr’s of every colour and creed. Took so many differing meds I almost rattled like a pill bottle. But that thing, ‘cured’ has been very illusive, despite all of the promises from medicos that they had one. Like you, a 3-4 is a good day.

Indeed. And if it helps, that’s what you do. Some may question it, but if it works for you that’s all that matters.

Merl from the Modsupport Team

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Hi,

No fifth cranial nerve conditions are pleasant to say the least, but make sure you have an MRI with contrast!!

If someone had just ticked the additional option I might have been diagnosed in my teens with having a vascular loop (blood vessel close/touching nerve).

30+ years later with no medicinal help (except for the copious amounts of illegal weed) to get a diagnosis and 3 hospitals, 7 neurologists and countless doctors later it’s a little more manageable but it’s not always the physical torture but also the psychological!!!

Don’t let anyone stand in your way and if you have to do what I did, walk into a doctor’s and say you can refer me to a neurologist or call the police because I’m not leaving! Luckily they chose the neurologist. (I’m in the UK.)

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AB-SO-LUTELY. Trying to deal with it all… …ohhh, it can be hell. I’ve often said ‘Sometimes I think it would be easier if I’d lost a limb. At least then everybody could see why’. But with it all being ‘invisible’, that physical recognition isn’t there. It’s easy for others, standing on the outside, to make their own an assessment, or more a judgement. I’ve tried to go down the path of educating others, but with some it’s like you can see their eyes glaze over. They have no clue just how bad BAD can be.

You know something is amiss, what is going on? You have every right to ask for a referral to obtain the answers you seek. The psychological impact can be HUGE. NEVER forget to look after your mental health on this journey. And yes, I do mean ‘journey’. PCP’s can sometimes like to see themselves as ‘gatekeepers’ to the medical world. I’m in Australia and here we have GP’s (same as a PCP) then we have physicians, then we have specialists. Often GP’s will make the specialists referrals, cutting out the physician. But for more complex cases a medical investigator can be needed, that investigation is what a physician’s role is.

The Phyician’s often have a network of specialist practitioners they know, having those relationships already established means you aren’t starting from zero, they already know the wording of reports, they know each others ‘style’. The phyicians role is to take a more wholistic view of an individual, make the relevant referrals and collate all of the relevant reports/scans/examinations to obtain a wholistic diagnosis. PCP’s / GP’s can be great for your everyday healthcare needs ie "…here, take these tablets. Comeback and see me in a week…’ type thing and some like to think the know-it-all. They don’t. Not even specialists know-it-all. Don’t allow them to minimise your concerns.

I say all of this because I didn’t, I was taught “The Dr is always right”. They’re not. I tried to question them, but they didn’t like that. It wasn’t until something major happened that they investigated. I cannot tell you how many times I’ve thought ‘if only those former Dr’s had looked a little more. If only I’d have stood my ground and not been written off as every type of crazy because “Ohh the pain can’t be THAT bad…” this could have all been managed much differently’.

Merl from the Modsupport Team

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I got my first experience after having a Root Canal. I went back to the dentist and he told me that his wife told him exactly what it was and told me to go back to my MS Neurologist. That’s when I had my first of 3 Rhyzotomies. The V2 & V3 nerves are my issue. I am also taking Gabapentine & Oxycarbazine. These pills seem to help alot.

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There is definitely hope. First attack at 13, now 45, Been pain free for decades with no surgery, no drugs, all natural stuff. Key is controlling infection/inflammation in the nervous system, and reducing pressure on the nerves. MVD can reduce pressure, which is why it often works at least for a time. Upper cervical chiropractic works in the same manner to relieve pressure without invasive surgery, definitely worth a try. It helps in the majority of cases, but I’m sure it depends on exactly how your nerve is compressed, and the skill of the practitioner. Was amazing for me.

My experience has taught me that long term results require controlling infection/inflammation in the nervous system. Olive leaf, lysine, silver are incredibly effective at that.

I’ve posted what I’ve learned and the resources I used to attack it in my other posts if you check my profile. It worked for me, and for multiple others who have tried it. Blessings on your journey. Keep hope, you can be completely pain free, and remain that way!

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Thank you!

We have similar triggers. The pain subsides with medication but it’s still there in the background. I guess I should remain happy with 3-4/10 levels.

I’m gonna try to talk to my neurologist again about switching my medication. What medication has helped you most the most while having Type 2/3 tirgeminal neuralgia?

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I’m so sorry. What has helped me the most is a long acting actual pain med, a shorter acting opioid, balcofen and a topical cream with lidocaine and ketamine, etc in it. If your doc isn’t comfortable treating real pain..find a new doctor! They shouldn’t fear treating you with the only meds that work. If they start trying to do blocks, etc..run…I had a series of six each side and all it did was involve a previously uninvolved nerve that is in my scalp. I hope you have true relief, soon. I have never felt “high” or altered, by the way…if they know what they are doing, they can give meds that target pain and only in the absence of pain does anyone feel anything. I am a control freak, do not drink, and was very afraid of pain medications..my original doctor helped educate me on them and why I needed them..and the trick is to find the smallest amount that reduces the pain enough to have some quality of life and function..pain free is a dream, one I don’t have, but maintaining a 3-4/10 is doable..and I am so grateful for it. Gentle hugs!

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Dear Cathieebee you sound like a perfect candidate for what has stopped all my pain after having Trigeminal Neuralgia for 20 years… mainly every Winter…
Find a Neurologist who will give you botox …
they are using botox in Australia for pain and it works… knees - spine - TN
I am currently in remission and on no medication after 4 sessions.
The sessions are every 3 months so it does not damage my face muscles.. as it wears off.
My neurologist injects small amounts of botox across my face in a grid pattern
(RHS at the moment as the LHS is numb from an operation 3 yrs ago)
Wish I knew about this before agreeing to get the operation from a different Neurosurgeon.

I get about 30 tiny injections, which hurt going in but its worth it.. takes 2 weeks to settle in then as it works you can slowly back off medication… I did this after my second session.
I am currently in remission but we are going into Winter soon, so just had another session, though less injections; so have medication to help some breakout pain if it happens…

Also I have found that wearing a beanie hat keeps my head warm as a lot of body heat escaped through our heads and keeping warm helps the nerves heal. I even wear it to bed as it helps me get a good nights sleep… which is important for nerve regeneration, which takes a long time…

Also Vitamin B12 has been a great help over the years as it supports the nerves to build stronger sheafs around them… hope this can help you -
hope you can find a young Neurologist who knows or is eager to learn about this use of botox.. for such pain…
kind regards… GP - Gail Patricia

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Hey Gail,

I’d like to add a word of caution here. It works for some, but not for all.

I was told by a neurologist that Botox was going to be that magic key I’ve been searching for and although I had multiple treatments in my face, neck and shoulders over 9mths, it was not that miracle I been promised. Some people have reported excellent results with Botox, but for others, hmmm, not so much.

Merl from the Modsupport Team

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Thanks Merl - yes, I do realise it only seems to be working for some…
But staying positive is important for everyone; no matter what they try…
Sorry it has not helped you…
Another patient of my neurologist is also in remission for 10 months now…

It is certainly better than being on high doses of opioids.. Plus 1000mg Tegretol… daily..

I feel human again… And can function; work in my garden and take on complex jobs..
Just hoping it will last…
Gentle hugs..
Gail

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I think I applied to you once before. I grind my teeth at night. And I also have dry mouth but grinding my teeth is the worst. Have you thought about getting a mouthguard when you sleep at night. You know how you think of things after you’re done. Why I thought about this.

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Hello,

I’ve done everything : mouth guard, cervical pillow, ice pads, seeing chiropractor/physiotherapist, etc. The only thing that’s been working is medication, icing my face and doing minimal amount of things (lying in bed all day.)

Now, I can’t do this because i have bills to pay. But the pain has been decreasing little by little each month, so I’m hoping it’ll resolve itself soon. (maybe)