Been dealing with this for 2 years. Is anyone else experiencing this? Been working with Drs and Neuro, but Neuro is slow to respond. First Neuro stopped practicing. The new one we missed the appt by 10 minutes and they canceled and can't get in for over a month. We have increased his meds per his Dr. No sign of relief.
I am so sorry that your dad actually has this. Several neurologist were called in and they put me on large dosage of gabapentin for several days even after saying that I didn’t have it after all. I had to slowly come off of the med. I was to follow up with all the specialist for the suspected diseases but after discussing with the neurologist office later, they didn’t feel it was necessary but to come in if the pain returned. I admit when I feel a twinge of pain in my head, I immediately relax and start relaxing my scalp etc. It was that scary. I know neurologist in my area take a long time to get in to see. I don’t know where they found all the ones circling my hospital bed that night. It was in the heights of COVID so perhaps they were already on call.
I think if he is in excruciating pain, I would take him to the best hospital ER I could get him to, even if it is a lengthy drive, in hopes of finding a neurologist who had a different idea of how to treat if the current method is not working.
I might try acupuncture. Massage would be too painful I think. Reflexology might give relief. In other words, if “traditional” methods give no relief, try what is available to you. CBD oil might relax him some. a muscle relaxer sometimes helps relax a person so that they don’t increase the pain by tensing up.
Two years is a long time to be in constant pain. I hope someone has better advice than mine, Take care.
Sone days OK some real bad.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347
Touching or stimulating the face is what can trigger episodes so absolutely no massage, no acupuncture and no CBD oil - there is no evidence that the pain is caused by "tension" plus it can interact with any other prescription meds. Read the Mayo info about causes.
This procedure doesn't work for everyone, however (some have partial or short-term remission of pain, and a few get no relief at all). Further, this is a major surgery and many older people will not be in good enough overall health to be candidates for it.
As you've found out, initial treatment is almost always with drugs, but, patients develop a tolerance to these drugs over time and they become ineffective. My understanding is that although morphine and other opiates are remarkably effective against practically all types of pain they are seldom effective for trigeminal neuralgia.
There are a variety of lower-risk procedures that are known as "destructive" procedures because they work by damaging the trigeminal nerve that carries (or possible misfires and generates) the pain. "Gamma Knife" is a "surgery" performed with radiation (no cutting) that often provides relief, but it doesn't last for long. It can be repeated, however. Other techniques involve injecting chemicals to damage the nerve, often at the node where it separates into into its three branches.
The pain described by this is somewhat of a cross between the "brain freeze" one sometimes gets when eating ice cream and and a severe electric shock. Its intensity is comparable to a dental drill hitting a sensitive nerve. The effect of this on quality of life cannot be minimized.
But, it is usually possible to obtain at least partial relief (at least for awhile) and many obtain a total or near-total, durable relief.
Because the disease is uncommon it is often not diagnosed correctly and, once it is, it may not be optimally treated. I'd strongly urge you to find a physician with extensive experience in this particular malady, although that may involve the inconvenience of travelling to a major medical center (as these are the only ones that would see this condition with any frequency).
First of all... find yourself a good general practitioner that will listen to you. I found Neurologists are waste of time unless you are unwilling to do your own research or are wanting surgical intervention. Get into trigeminal neuralgia Awareness groups on Facebook. The Facial Pain Association is a great resource.
Get the book... Striking Back if you can find it. It's free on Kindle Unlimited, but hard to find otherwise.
What medication is he on? Has he tried the carbamazepine? That seems to be the most effective and first line of defense. I went into a year long remission when first put on it. Unfortunately, as with most meds...I became resistant after time.
I had the Microvascular decompression surgery in 2014... but it was unsuccessful.
After years of trial and error, I have settled on a medication regimen that is semi effective for me.
Topamax, Baclofen, Celebrex and Oxycodone. I have always found that opiates helped me even though neurologists would try to tell me different. I don't abuse them, I take a minimal amount. But I do use them regularly.
I am under the care of a pain management team and it's manageable for now.
I can't stress enough how important it is to do your own research. I have basically had to instruct my care team on what medications are available and what I wanted to try. It's such a rare condition and there isn't a lot of time spent on it in med school. Support groups are such a great resource. People are so willing to share their experiences....you will learn how to weed out the good from the bad advice quickly.
Good luck and give your dad gentle hugs on his good side.
Looking towards BOS in Mass Gen, Top-notch Docs there but have to go through here first.
Some days OK like today. He eats a lot of apple sauce, scrambled eggs if we make them for him, tomato soup through a straw, cake if it is on the counter, he took one of my bagels the other day, depending on if he is hungry or not. Every day brings a new. He can't do opiates hence the tramadol.
Challenging, have used antibiotics s few times to reduce swelling in the gum area thinking that was the issue. Been consulting with others in the medical field. Now on to my own research. It is pretty unknown.
Pretty frustrating as they just throw meds to see what happens.
During REALLY bad flare ups I have found that a 5 day course of steroids can bring me out of it. Of course, you can't do this very often... but it's a lifesaver for me.
Figuring out his triggers and avoiding them is a huge part of pain management. Stress is a really big one for me. Sounds like he's figured out chewing may be one for him. Talking, brushing teeth, sometimes just getting the sun in my right eye, or wind in my ear can set me off. And loud noises... oh vey! I haven't been to a theater or concert in 13 years. It took a long time to figure them all out.
Another little trick I use sometimes when I get the bad crushing pain is to use those Salon Pas patches on my face ( not too close to my eyes) but on my forehead, jaw and cheek. You can cut them to size. They get hot...but to me it feels good. Some people like cold. I also use an oil I get from Amazon called White Flowers Oil.... it's VERY hot... but, ohhhhh it feels good. Especially when my face is burning, which is weird, but it takes the burn out.
That's about all I can think of right now. Feel free to ask me anything.
Take care.
Kelly
Now to get his attitude in line.
The beginning of the week was challenging. I'm dealing with a cold for week 3 now, feel like crap. Headfirst, now into my chest. So suffice to say I am not the happiest of campers.
So he mentions his ensure I have been getting him and asks to buy another case. OK, when I get a chance. So I say, "let me know if you need anything from the store'. A couple of hours later I see on the counter a list of food and an empty jar of special mustard I bought for myself and hid in the back of the fridge. And on the note to "put it on his account". Does he have an account?
Turns out he had his ATM card taken in the machine due to the wrong password but failed to tell me.
Anyway, he asks to borrow money to go to the barber, that is when I found out about the ATM thing. I just did his taxes, he got his money in like 5 days and he has it in his bank.
I tell my wife this, I made dinner and had an online meeting for work later. Apparently, he said something to her and she lit off like the fourth of July. Lots of pent-up frustration plus her family is in Ukraine with all this crap and she is concerned. I hear bits and pieces, I let her go as she needed to. Afterward, I told her I was proud of her, She needed that.
Log story short, she told him we can't go anywhere. No vacation, no help, nothing. He just sat there, then he changed the subject. I guess that night he tried to call a relative to see if he could go there while we go on vacation but that relative has no room. They have been through having him stay and don't want it either.
So last night he tells my wife (while I am at a meeting) that we can go on vacation and he will go to the local hotel (he has tax money now), they have a restaurant there. She just rolled her eyes. "Whos going to pick you up if you fall in your room"?
Anyway. He gets a few dollars in his pocket and spends like a sailor on leave. I transferred his tax money to his savings but he will burn through that (he already started buying stuff).
Funny, he's willing to pay to eat at a restaurant or pay for a hotel but does not give us anything for room and board here ($900 oil bill this week).
My wife and I have our daughter coming home to be here for a week while we go on a big anniversary which is way overdue.
Been a stressful week, to say the least.
There are other issues I am dealing with him but that is me trying to share my home. No privacy and no way to get a vacation in (trying to). He got 2 tax deposits last week, one I did for this year and one from last year. I told him I was going to move it to savings and not blow it. He went and moved it back into his checking. Now he has cash and is taking people out to dinner and lunch and giving money to some family members. Not a dime to the people who take care of him and feed him and shelter him and transport him.....nope, now he is looking like he is flush with cash. He did the same thing to my mom, had a dime spent 2. Always trying to keep up with others. Yes, I am bitter. He put my mom through financial hell and she had to try to keep up. I didn't see it until I was an adult.