Capsaicin liquid

General General TN & GPN (Old Site)
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Hi everyone,

I recognize that my TN II is much less severe than what many of you are experiencing, but I wanted to share what seems to be a minor success. I started using capsaicin patches (the kind you put on your back for a backache) a couple of weeks ago. They were only .025% strength, but I felt like as long as I wore them, I had some relief from the constant boring sensation in my scalp and the unrelenting pressure in my scalp. I got tired of looking like an accident victim, though, with the large bandage stretched across the right side of my forehead, so I started looking for a different solution.

Last Saturday, I happened to stop at s CVS, and I noticed they carry capsaicin liquid in an applicator bottle. It's stronger than the bandages, at .15%. It's really easy to use because I don't get it on my hands, and I can put it on my scalp without making my hair greasy.

This stuff seems to work well for me. It, and finding the right level of gabepentin, are keeping the pain at bay.

I've included a picture of the box, so you know what to look for if you're interested in trying it.

As a side note, if you do decide to use it, be sure to tilt your head back before rinsing your face and hair in the shower. If you don't, you'll long for some sour cream to slather on your face to extinguish the fire!

Beth

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When I asked my doctor he refuse to prescribe it to me … No effect he said but after your words I will try to get it…
Can I ask you Beth… Is your TN really not aggressive or you just diagnosed ? Because what make me really upset & depressed what they are saying that it’s progressive & you will be disabled as time going ! :’(

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Jamie - I looked up both Blue Emu and Neuragen.They both look promising! I actually found Neuragen online through Walgreen's, and I like that it's homeopathic. For now, I'm good with the capsaicin, but I can guarantee you that if it stops working, I'm going to try one or both of these! That said, it kind of grosses me out to think of smearing animal fat on my face! But Hell, I'll try anything when the pain is present. :)

dodo - You don't need a prescription to get the level of capsaicin liquid I'm using. It's over the counter at CVS or CVS online. As for my TN, for now it's not terribly aggressive. I had a bad flare for a couple of weeks that started just over a month ago. After experiencing some horrible side effects coming off of gabepentin suddenly (as my Dr. told me to) and starting Tegretol (I can't adequately express how dizzy it made me), I went back on the gabepentin but at a different dose and started the capsaicin liquid. Fortunately, this seems to keep the pain largely at bay.

I, too, have been struggling with what having TN means for my life. Before the capsaicin/ med change, my pain was enough to keep me in bed many days with ice packs on my head. I'm home taking care of my ailing in-laws for the present, so I can have the luxury of resting when I need to. But when I go back to work full time, I honestly don't know how I'll deal with it. When I'm really hurting, I can't fathom being an effective employee, because my focus is so much on the pain. But for the past week and a half, my pain has been well-managed, so I feel like I could be okay to work.

I, too, am terrified of this progressive disorder. I have Type II, which by most accounts isn't helped much by the surgeries that can be so effective for Type I patients. I don't have health insurance right now, so I can't get the MRI I need, or even see a specialist in Boston. Apparently, they are required by law to only seen patients with insurance. It's a Massachusetts thing. But there are good specialists there who are very familiar with TN, and I'm shut of from seeing them. I would really like to have a doctor who can help me develop a course of action. Unfortunately, the ones around here don't seem to be too interested in working with me. I need to find a new practice, and I feel like Boston would be my best bet.

I think we're all terrified about our future with this disorder. During my last, flare, I was filled with despair. Today, I'm feeling like the future is hopeful. I will likely always have some pain (although I'm hoping for a 30 year remission!), but I feel like it will be manageable. Have faith ... there will be good days ahead.

Beth

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Thank you beth for faithful words… You are true I fail my life just hell & when I am in remission I feel hope is back & I am fully healthy
… Future what is really scared me to death I can’t stop thinking in my disease & am I really sick ? No one see your pain no one understand & the worse thing it can’t be managed till you hope to live just normal this is all what you want when you are under pain … Oh my god I am really tired of fighting ! If I saw a cancer patient I said at least he can eat, talk , live even if he knows he will die ! Oh god things in my head just killing I want to stop thinking in future !!

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Hi Beth, thanks for posting this! Does the capsaicin stain? I have the searing pain running down my jaw, and have been using warm compresses, but the pain seems to last longer, and I can't carry a hot rice bag with me everywhere!

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Hi BurnBabyBurn,

No, it doesn't stain at all! It's a clear liquid, so nobody knows you are wearing it. Apparently, it works by killing off nerve endings temporarily, so after a few days of wearing it, it doesn't even burn at all. It really seems to decadent my pain most of the way. It's so worth the $9.

Beth

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Dodo, things have a way of working out. Be strong! That said, I'm really sorry you're going through this. :[

dodo said:

Thank you beth for faithful words.. You are true I fail my life just hell & when I am in remission I feel hope is back & I am fully healthy
.. Future what is really scared me to death I can't stop thinking in my disease & am I really sick ? No one see your pain no one understand & the worse thing it can't be managed till you hope to live just normal this is all what you want when you are under pain .. Oh my god I am really tired of fighting ! If I saw a cancer patient I said at least he can eat, talk , live even if he knows he will die ! Oh god things in my head just killing I want to stop thinking in future !!
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I am so pleased you have found relief with this. It's funny the things we try to find some sort of relief.

However I must add a note of caution. My darling husband read about the possible relief gained by some TN sufferers by using capsaicin. He dutifully followed his research up and bought some cream which I tried on cotton wool placed up in my gums. I do not recall the strength of the capsaicin but judging by the result it must have been high as I ended up in hospital that night in agony. For me, and my poor nerves, it was too much.

In hindsight a little more research to find something with a lower strength may have been beneficial. But all that worked really was surgery so I was a rotten case to start with I think.

Best of luck.

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I had been seeing an oral & maxiofacial specialist for a while (Beth---also in Boston---I sent you a friend request) and he recommended this. Bobbyt, the way I was instructed to do it was to put numbing gel on my gums first, and then a speck of capsaicin. I found that it would intensify the pain by an astounding amount, and then usually (not always) offer relief. I always imagined it like a reboot button for my nerves.