How to help a long-distance friend with trigeminal neuralgia?
January 22, 2010 4:55 PM Subscribe
My best friend was just diagnosed with trigeminal neuralgia. She initially responded to Tegretol but it was causing massive mood changes and suicidal ideations at its effective dose. Her doctor is working on figuring out what to try next. I'm 1000 miles away and can't get to her. She's single, lives alone, and is being driven crazy by the pain. I want to help -- what can I do or send that might make things a little better or easier for her?
Anyone with ideas about what might ease the pain she's experiencing -- they call it the Suicide Disease for a reason -- ideas on that are welcome too. I've looked on the Facial Pain Association forums (formerly the Trigeminal Neuralgia Association) but very little suggested there seems to be helping her.
Anyone with ideas about what might ease the pain she's experiencing -- they call it the Suicide Disease for a reason -- ideas on that are welcome too. I've looked on the Facial Pain Association forums (formerly the Trigeminal Neuralgia Association) but very little suggested there seems to be helping her.
I am MeMailing you.
posted by honeybee413 at 6:33 PM on January 22, 2010
posted by honeybee413 at 6:33 PM on January 22, 2010
Best answer: I am an Atypical Trigeminal Neuralgia sufferer, and have been most of my life (as long as I can remember I have had the symptoms, I was diagnosed at ~20ish).
The things which help me the most during a flare are:
Orajel (for the tooth and gum pain that WILL NOT STOP, and makes me want to pull my teeth out with a pair of pilars)
Wiskey (also applied topically for tooth and gum pain)
Badger Meditation balm (the smell for some reason helps reduce spikes caused by strong smells when I breath in).
Breathing through a thin white handkerchief held over my face at night to reduce cold air drafts into my nose. I use cheep ones from Walmart, and they also work for the weird nosebleeds I get during flares as well.
A nice pair of very dark sunglasses, assuming she can stand having something touch her face.
Blackout curtians.
A humidifier IN ANOTHER ROOM.
Medically, I'm currently on both Gabapentin (800 mg 2-5 times daily) and Lyrica (15-50mg 2-4 times daily). I've had fantastic results with the Gabapentin alone, particularly at reducing the severity and frequency of flares, and with the Lyrica, I've reduced what was pretty much one flare a month to (knock on wood) one flare every 3 months. Her mileage may vary, but those two drugs are the most widely prescribed for a very good reason.
Until she gets her flares somewhat controlled (they never will be completely) the best things you can help her out with might be getting a maid service for her, or a laundry service. Cleaning and laundry were the two things I could never do with a bad flare. Dishes were also very very hard, as the smell and sounds bothered me. You also might want to put your credit card on file with a cab company for her use, if you are willing. Driving with a flare is the closest thing to hell I can think of, short of a flare itself.
If your friend ever needs someone to contact to talk to another sufferer, please, feel free to give her my contact info from my profile. This condition is horrible, and it sucks to suffer alone.
posted by strixus at 6:38 PM on January 22, 2010 [1 favorite]
The things which help me the most during a flare are:
Orajel (for the tooth and gum pain that WILL NOT STOP, and makes me want to pull my teeth out with a pair of pilars)
Wiskey (also applied topically for tooth and gum pain)
Badger Meditation balm (the smell for some reason helps reduce spikes caused by strong smells when I breath in).
Breathing through a thin white handkerchief held over my face at night to reduce cold air drafts into my nose. I use cheep ones from Walmart, and they also work for the weird nosebleeds I get during flares as well.
A nice pair of very dark sunglasses, assuming she can stand having something touch her face.
Blackout curtians.
A humidifier IN ANOTHER ROOM.
Medically, I'm currently on both Gabapentin (800 mg 2-5 times daily) and Lyrica (15-50mg 2-4 times daily). I've had fantastic results with the Gabapentin alone, particularly at reducing the severity and frequency of flares, and with the Lyrica, I've reduced what was pretty much one flare a month to (knock on wood) one flare every 3 months. Her mileage may vary, but those two drugs are the most widely prescribed for a very good reason.
Until she gets her flares somewhat controlled (they never will be completely) the best things you can help her out with might be getting a maid service for her, or a laundry service. Cleaning and laundry were the two things I could never do with a bad flare. Dishes were also very very hard, as the smell and sounds bothered me. You also might want to put your credit card on file with a cab company for her use, if you are willing. Driving with a flare is the closest thing to hell I can think of, short of a flare itself.
If your friend ever needs someone to contact to talk to another sufferer, please, feel free to give her my contact info from my profile. This condition is horrible, and it sucks to suffer alone.
posted by strixus at 6:38 PM on January 22, 2010 [1 favorite]
I have TN and so do a few other people in the family. The pain can be incredible and it may take multiple attempts for her doctors to find a pain management technique that helps. TN can be absolutely debilitating but it can also go into remission. It is a crazy, crazy condition.
I highly encourage her to get in touch with the Facial Pain Association because of the support they can provide. There may be a support group in her area and they will hopefully be able to direct her to a neurologist who's really experienced in treatment of TN. Since my mom also has TN, it helps us when the other says "I'm sorry. I know how much you're hurting." The difference here is that you saying it won't help because you have no clue what this pain is like. I can say it to Mom and she can say it to me and it helps because the person saying it really does know. Please point her to support resources.
Depending upon the severity of her TN, she may need to consider the surgical options. Speaking of surgical options, have her doctors ruled out a dental cause of her pain? For example, my TN was helped tremendously by having a good dentist adjust my bite. It didn't cure it, but it helped a lot.
When my TN is really bad, the things that help me are sleep, sleep and sleep. Let's put it this way, if you feel like you have someone stabbing a giant knife in your skull every 30 seconds, nothing helps like oblivion. There's no way to read. There's no way to watch tv or live your life in even a semi normal manner. Unfortunately, this pain goes on 24/7 until it suddenly eases up days or weeks later.
Encourage her to get as much sleep as she can when she's at peak pain. Have food or groceries delivered. Hire a maid to help with the cleaning. Anything that will help remove any sort of physical or mental chore helps. Don't be surprised if she's unable to speak on the phone during periods of pain. The phone touching her face can trigger the pain. Heck, cold air can trigger the pain.
Sorry, I'm rambling. I've lived with TN since I was 13 years old. My Mom was diagnosed a few years before me. My Grandma had it for decades. Memail me if your friend wants to establish direct contact.
I wish her success and pain free days.
posted by onhazier at 7:03 PM on January 22, 2010 [1 favorite]
I highly encourage her to get in touch with the Facial Pain Association because of the support they can provide. There may be a support group in her area and they will hopefully be able to direct her to a neurologist who's really experienced in treatment of TN. Since my mom also has TN, it helps us when the other says "I'm sorry. I know how much you're hurting." The difference here is that you saying it won't help because you have no clue what this pain is like. I can say it to Mom and she can say it to me and it helps because the person saying it really does know. Please point her to support resources.
Depending upon the severity of her TN, she may need to consider the surgical options. Speaking of surgical options, have her doctors ruled out a dental cause of her pain? For example, my TN was helped tremendously by having a good dentist adjust my bite. It didn't cure it, but it helped a lot.
When my TN is really bad, the things that help me are sleep, sleep and sleep. Let's put it this way, if you feel like you have someone stabbing a giant knife in your skull every 30 seconds, nothing helps like oblivion. There's no way to read. There's no way to watch tv or live your life in even a semi normal manner. Unfortunately, this pain goes on 24/7 until it suddenly eases up days or weeks later.
Encourage her to get as much sleep as she can when she's at peak pain. Have food or groceries delivered. Hire a maid to help with the cleaning. Anything that will help remove any sort of physical or mental chore helps. Don't be surprised if she's unable to speak on the phone during periods of pain. The phone touching her face can trigger the pain. Heck, cold air can trigger the pain.
Sorry, I'm rambling. I've lived with TN since I was 13 years old. My Mom was diagnosed a few years before me. My Grandma had it for decades. Memail me if your friend wants to establish direct contact.
I wish her success and pain free days.
posted by onhazier at 7:03 PM on January 22, 2010 [1 favorite]
Best answer: Oh God, I'm sorry.
Fish oil and Natural Calm (a magnesium supplement--this particular supplement, not any other types of mag supplements worked as well) were both recommended to me by a neurologist because I didn't want to take the meds for fear it would interefere with my competitive lifting.
They do seem to help a great deal.
If you can find soft, delicious foods to send her--shake mixes, puddings, I don't know, really gourmet stuff she can enjoy without moving her mouth or face too much--that would probably be appreciated.
posted by Anonymous at 7:44 PM on January 22, 2010
Fish oil and Natural Calm (a magnesium supplement--this particular supplement, not any other types of mag supplements worked as well) were both recommended to me by a neurologist because I didn't want to take the meds for fear it would interefere with my competitive lifting.
They do seem to help a great deal.
If you can find soft, delicious foods to send her--shake mixes, puddings, I don't know, really gourmet stuff she can enjoy without moving her mouth or face too much--that would probably be appreciated.
posted by Anonymous at 7:44 PM on January 22, 2010
I don't have TN (I'm so sorry for your friend, it sounds awful) but I do have diabetic neuropathy in my feet which is another type of nerve pain. The person who mentioned taking Lyrica and gabapentin for TN, both of which are also prescribed for neuropathy, made me wonder if alpha-lipoic-acid might be helpful for your friend at all? I take it for the pain in my feet and it really makes a difference. It doesn't "cure" it... I've been taking it for a couple of years and if I skip even a day, the pain goes pretty much back to where it was at its worst.
A quick Google shows that there is some interest and some anecdotal evidence that this has helped some people with TN. Might be worth a try as it is cheap, relatively safe and can be purchased without a prescription.
posted by Serene Empress Dork at 8:28 PM on January 22, 2010
A quick Google shows that there is some interest and some anecdotal evidence that this has helped some people with TN. Might be worth a try as it is cheap, relatively safe and can be purchased without a prescription.
posted by Serene Empress Dork at 8:28 PM on January 22, 2010
I don't have TN, but I have chronic migraines and have a good idea of what it likes to live with fiery, unrelenting head pain. When I am deep into a migraine, my life is pretty damn miserable. What helps the most is making my surroundings as comfortable and luxurious as possible: my head may hurt, but at least the rest of me can feel really, really good. With that being said, when I am in an attack I like to curl up with my microfiber robe and socks on my nice tempurpedic mattress and pillow. I like to put a warm compress on my neck and an ice pack on my head. I like things like good herbal teas, and nice (not strong smelling) lotions. I also like being surrounded by and looking at plants.
Hope that gives you some suggestions. The two hardest parts about living with a chronic pain condition are the isolation/alienation you feel from the rest of the world, and getting your chores/responsibilities done like a normal person. So don't let her feel alienated and alone, and if you have the ability to help with day to day living (don't kill yourself if you don't) do it. Make sure you stay in contact with her. When you call her be in a bright, loving, positive mood. And remember that her condition will go on for a long time, so try to maintain your contact.
posted by sickinthehead at 7:45 AM on January 23, 2010
Hope that gives you some suggestions. The two hardest parts about living with a chronic pain condition are the isolation/alienation you feel from the rest of the world, and getting your chores/responsibilities done like a normal person. So don't let her feel alienated and alone, and if you have the ability to help with day to day living (don't kill yourself if you don't) do it. Make sure you stay in contact with her. When you call her be in a bright, loving, positive mood. And remember that her condition will go on for a long time, so try to maintain your contact.
posted by sickinthehead at 7:45 AM on January 23, 2010
Here in the UK long-term TN is more and more often being treated surgically. Microvascular decompression done by a neurosurgeon. Radiofrequency ablation of the nerve in a major pain centre by an expert, there's a radiotherapy approach...., I mention these only because of the posters who have been living with it for years.
This is so incredibly painful I can't imagine dealing with it/living with it as a chronic condition.
(Colleen McCullough, australian author is sceduled for treatment this month)
Really good suggestions above.
posted by Wilder at 10:11 AM on January 24, 2010
This is so incredibly painful I can't imagine dealing with it/living with it as a chronic condition.
(Colleen McCullough, australian author is sceduled for treatment this month)
Really good suggestions above.
posted by Wilder at 10:11 AM on January 24, 2010
This question has been posted for awhile so I hope your lucky friend has found treatment by now. If relief still evades I can make a few suggestions as a fellow sufferer.
An MRI will have been ordered by any competent neurologist. If it has not find a neurologist at the nearest teaching hospital. Imaging is important for showing the location of any compression between the nerve and a blood vessel or vein and, thus, for encouraging a neurosurgeon to perform an MVD. If no compression is found do not be discouraged. Many extensive compressions are found only during surgery.
Neurosurgeons do not know about medications and neurologists tend to favor pet meds. likely in relationship to drug companies. Go to the forums and read what other TN patients like you are using. Tegretol has given way to Lamictal or Lyrica, usually with a narcotic for break-through pain.
posted by Pamelayne at 8:32 AM on April 27, 2010
An MRI will have been ordered by any competent neurologist. If it has not find a neurologist at the nearest teaching hospital. Imaging is important for showing the location of any compression between the nerve and a blood vessel or vein and, thus, for encouraging a neurosurgeon to perform an MVD. If no compression is found do not be discouraged. Many extensive compressions are found only during surgery.
Neurosurgeons do not know about medications and neurologists tend to favor pet meds. likely in relationship to drug companies. Go to the forums and read what other TN patients like you are using. Tegretol has given way to Lamictal or Lyrica, usually with a narcotic for break-through pain.
posted by Pamelayne at 8:32 AM on April 27, 2010
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- Get stuff delivered to her - food, prepared food, meds from the pharmacy, etc.
- Make phone calls for her - there's bound to be a ton of bureaucracy to deal with, doctors, insurance, etc, maybe you can do some of it.
- Be in touch with her friends in the area and see what you can ask for on her behalf that she might not be comfortable to ask for herself - company, driving help, errands
- I imagine the pain doesn't leave her much room for concentration at the same time as she might really want some kind of distraction. Find out what works for her - easy romance novels? magazines? some computer game? and try to get it to her.
- Write her something every day. Paper mail is wonderful if you can manage it, but just an e-mail saying hi and sharing something and that you love her, or calling her if she's a telephone person and up for it.
I hope any of this is helpful and I wish both of you strength and luck.
posted by Salamandrous at 5:58 PM on January 22, 2010