Diagnosed with Trigeminal Neuralgia

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Aloretta Dethly
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Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

My pain started around September with sensitivity in my upper left side teeth. It took until November when I finally went to the dentist about it. They took x-rays and found nothing. Prescribed an antibiotic just in case it was an infection brewing. That did nothing and two weeks later they did another round of x-rays that showed nothing. I was the referred to an ENT.

The ENT ordered a CT scan of the sinuses to rule out anything there. CT came back clean. He then prescribed Gabapentin with the suspicion of TN. He told me to call after a week. After a week and a half I didn't think it was working and I felt like a zombie so he pulled me off of it. Two days later I was in a full on flare up. So apparently it was working, just not completely. It took 4 total ENT visits (one where he numbed my sinus/nasal cavity to see if that helped, it didn't) before I requested a referral to a neurologist. The ENT want to try a round of steroids but upon my request referred me instead.

I met the neurologist this week. He spent 40 minutes with me taking thorough notes and doing a thorough exam. He wanted to try the tricyclic antidepressant first but it would interact with a medication I am on. Then he wanted to try tegretol, but again it would interfere. So he decided to adjust the dosage and times that I took the Gabapentin. The Gabapentin made me dizzy, uncoordinated, slowed my reaction time, and made me tired so he suggested taking a dose in the middle of the day and again at night so it would maybe interfere with my day less.

He also ordered an MRI of the brain and made sure to tell me that he was writing it in a way that the insurance would approve it. He emphasized that he did not want me paying out of pocket for it.

For this being my first visit I felt pretty good about everything. It's kind of nice to have a name to put on what I've been dealing with but it's awful that it has to be this. I don't get the electrical shocks, at least that's not how I'd describe them. More of spikes of pain and a dull roar the rest of the time. Nights are usually worse. My triggers so far have been any type of cold (air, hand, food, drink), brushing my teeth, and if I touch certain parts of my face. A fun new development has been muscle cramping/spasms on the affected area and the additional area below that (left side lower lip/jaw/tongue).

My MRI is scheduled for January 24th to see if there is any visible compression.

If anyone has dealt with this or can offer any advice I would appreciate it.
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Rochelle Bos
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Re: Diagnosed with Trigeminal Neuralgia

Post by Rochelle Bos »

Omg! At first glance I thought it said TERMINAL and felt panic-y! Time to read up on trigeminal neuralgia! I bet it feels good to have a diagnosis ❤️ I hope you can figure out the perfect meds to feel normal!
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Darcy McBride
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Re: Diagnosed with Trigeminal Neuralgia

Post by Darcy McBride »

I hope your neurologist can quickly come up with the cause and treatment to give you some relief. I'm sorry you are having to deal with this! Keep us posted on how you are doing.
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Stormy Peak
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Re: Diagnosed with Trigeminal Neuralgia

Post by Stormy Peak »

Sorry you are dealing with all of that.

I have type II diabetes, and didn't know about it for years, until my feet started feeling like someone was running a 110 livewire across my toes and getting stabs of pain I can only think must feel like when a nail is driven between the bones.

I was already on hydrocodone for my back and was prescribed Gabapentin for the nerve pain in my feet. But.. after giving that drug a year - I'm to the point that with my next doctor visit in a few weeks I'm going to tell her I just can't use it anymore. If I take it at like 10 pm at night (as most of my foot pain happens after I lay down)...then around 9am to 10 am for about 2 hours, I have severe stomach cramps and diarrhea. I also found I was having episodes where I felt like I couldn't breathe easily. A few weeks ago I found out that happens sometimes when hydrocodone and Gabapentin are combined. So I'm glad your doctor was pretty thorough about cross checking your drugs.

I'm not sure what can replace the Gabapentin for nerve pain....but I just can't stand using it anymore. And I hope you can find some kind of relief for the nerve pain you are experiencing.

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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

Unfortunately I had a very bad weekend. After spending Saturday evening/night in pain I called the non emergency line and the on call neurologist prescribed me Baclofen for the muscle spasms. The first dose did nothing and Sunday evening I had the worst flare up I've had yet. It lasted over an hour and was absolutely agonizing.
My dad took me to the ER and the flare had started to subside. My nightly dose of Gabapentin and the second dose of Baclofen started to kick in. The ER called the neurologist on call and had them come down to see me. He explained that if I had another flare they'd give me an IV of Dilantin. They kept me for observation for a while but it seemed to be under control so I was allowed to go home.
In all I was up for 34 consecutive hours this weekend from the pain. I got home and was able to sleep for about six hours before I had to get up to go to work. Because of the medications and sleep deprivation my mom drove me.
I called my neurologist today and he instructed me to keep on the Gabapentin and Baclofen and added Lamictal to hopefully curb any future flare ups. He told me if I do have another flare to go to the ER for Dilantin.
I'm pretty much a ball of mush with all the meds and little sleep, but I'm doing alright.
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Darcy McBride
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Re: Diagnosed with Trigeminal Neuralgia

Post by Darcy McBride »

Ugh. What a rotten weekend for you! I hope the new medication can put a stop to those flare-ups!
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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

I woke up this morning with the left side of my face swollen. It wasn't insane or red or anything, just puffy. Pain wise I'm better but not pain free. After sleeping last night I'm more alert but definitely not back to normal yet.
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Re: Diagnosed with Trigeminal Neuralgia

Post by Stormy Peak »

I hope the meds will help you with this and the pain goes away and you get more sleep.
I know how it goes with pain keeping a person from sleeping, and how nice it feels when upon occasion I do get a good 5 or 6 hours of solid sleep in.

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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

Well the facial swelling hasn't gone away so my neurologist had me go to the emergency room today. I was there 6 hours. They pulled me off of the Lamictal and gave me an IV of Dilantin. The general consensus seemed to be that it was a reaction to the Lamictal. The Dilantin hit me hard, I was insanely dizzy and light headed. Thankfully my coworker drove me so I didn't have to do that.
I'm home now. The pharmacy had some issues getting my new scrip filled so I'll have to try to get that resolved tomorrow. For now, sleep.
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Te Akau Downs
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Re: Diagnosed with Trigeminal Neuralgia

Post by Te Akau Downs »

gosh this sounds awful to have, hope they find something soon to ease all your symptoms
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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

Well I had my MRI and the results came back 'unremarkable' which my neurologist expected. This was more to rule out anything else than to try and see compression. Apparently with TN you can only see compression of the nerve in about 50% of the cases.
I have been continuing my meds with no problems. My Gabapentin has been stepped up to 1200mg a day and I'm taking the Baclofen at a reduced dosage and frequency. The side effects of both have pretty much gone away. I'm only dizzy/light-headed when I take my higher Gabapentin dose at night so I sleep through most of it. The Dilantin I was prescribed to take after the second ER visit ended up being cancelled and everyone was pointing fingers at everyone else so I just said heck with it.
Pain wise I have been much better. Not pain free, but greatly reduced. As it stands I see my neurologist again in April. The plan is to keep on keeping on until then.
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Aloretta Dethly
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Re: Diagnosed with Trigeminal Neuralgia

Post by Aloretta Dethly »

I had my six month checkup recently with my neurologist. I'm still having pain, but no major attacks; the colder weather and wind is a trigger and touch (i.e. face masks) is still a trigger so I'm having to be very careful to minimize those. I have noticed the the affected side/area of my face now swells with the colder weather. I can tell when the temperature drops, its a really crappy superpower.

The neurologist upped my Gabapentin to 1500mg a day and commented that he didn't want to push it any higher than that; I can't argue too much with that since it makes me very sleepy. Since there aren't really any other medications that I can try that don't interfere with other meds I'm on, he said if the increased Gabapentin does not help more in the next six months, he will be referring me to a neurosurgeon.

I have been researching all treatment options since I was diagnosed so I have an idea of what may be suggested. The two main procedures are Gamma Knife surgery and Microvascular Decompression. Gamma Knife surgery is a concentrated radiation treatment that would target the base of my nerve so it isn't surgery in the traditional sense. Microvascular Decompression however is major surgery since it involves opening the skull and either removing the vein/artery affecting my nerve or inserting padding where the nerve exits the brain stem so it isn't irritated.

Obviously it's a ways off but I really didn't think I'd be faced with these options so soon. I've only been showing symptoms for just over a year. Several people have suggested getting a second opinion so I will be looking into that. This is certainly something I need to look at from every possible angle before making a decision. Sorry this wasn't a happier update. :-/
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Re: Diagnosed with Trigeminal Neuralgia

Post by Jack Christensen »

Aloretta Dethly wrote: 3 years ago I had my six month checkup recently with my neurologist. I'm still having pain, but no major attacks; the colder weather and wind is a trigger and touch (i.e. face masks) is still a trigger so I'm having to be very careful to minimize those. I have noticed the the affected side/area of my face now swells with the colder weather. I can tell when the temperature drops, its a really crappy superpower.

The neurologist upped my Gabapentin to 1500mg a day and commented that he didn't want to push it any higher than that; I can't argue too much with that since it makes me very sleepy. Since there aren't really any other medications that I can try that don't interfere with other meds I'm on, he said if the increased Gabapentin does not help more in the next six months, he will be referring me to a neurosurgeon.

I have been researching all treatment options since I was diagnosed so I have an idea of what may be suggested. The two main procedures are Gamma Knife surgery and Microvascular Decompression. Gamma Knife surgery is a concentrated radiation treatment that would target the base of my nerve so it isn't surgery in the traditional sense. Microvascular Decompression however is major surgery since it involves opening the skull and either removing the vein/artery affecting my nerve or inserting padding where the nerve exits the brain stem so it isn't irritated.

Obviously it's a ways off but I really didn't think I'd be faced with these options so soon. I've only been showing symptoms for just over a year. Several people have suggested getting a second opinion so I will be looking into that. This is certainly something I need to look at from every possible angle before making a decision. Sorry this wasn't a happier update. :-/
Hopefully you find a solution that is effective
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Nini Panini
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Re: Diagnosed with Trigeminal Neuralgia

Post by Nini Panini »

Sending you positive thoughts, best wishes, and prayers. I hope a second opinion and future treatment prove to be effective.
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Stormy Peak
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Re: Diagnosed with Trigeminal Neuralgia

Post by Stormy Peak »

Sorry to hear you are still having such pain, and the medicines are not the solution for giving you any real relief from it.
I finally told my doctor I couldn't to the Gabapentin anymore...it just made me sick on a daily basis...I decided dealing with the nerve pain was the least of two evils.

While not something to look forward too, at least there is a chance of living pain free if you can go with one of those procedures.
I hope that you will find some permanent relief, and it will be in a not too distant future.

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