So simply put, my symptoms are sore gums on the upper left side. It is by the last molar, but on the palate side. I am curious, can anyone else here relate to this pain. My pain is triggered just from contact with the tongue. It started a year ago (August, 2014), after I was on two medications (doxycycline for acne and cyclobenzaprine for a muscle spasm in my neck. I think the two medications interacted and caused this, although my general practitioner and pharmacist said this is unlikely. I was on neurontin 600 mg per day and this helped slightly. I weaned myself off because I am not a fan of medication to begin with. Much like all of you, I went through a bevy of doctors without an official diagnosis. I then went to see a neurologist who explained that it was Atypical Trigeminal Neuralgia. Thank you for any help you can give me :-)
Yes, I currently have symptoms of sore palate and tongue. My whole mouth now feels sore and uncomfortable. I also get shooting pains from upper palate up through the nostril. If things get really bad you may have to take meds. I hate it too..
Thank you for the reply Mary. Sorry to hear you have uncomfortable symptoms as well. How long ago did your symptoms start and have you seen any progression?
Well I have been on a rollercoaster of pain. I was diagnosed with TN1 ten years ago now. I have always had secondary pain as well, burning, etc. I have been on a lot of different meds. I have had two MVDs, first no relief at all, second minor relief for a few months. I had glycerol injection again a few months relief. Then last year gamma knife. Which has made things worse giving me symptoms of GPN as well. I just consider myself as unlucky!
Your symptoms seem consistent with Atypical Trigeminal Neuralgia (aka "Trigeminal Neuropathic Pain"). Along with your GP and pharmacist, I'd have to say that interactions between the two drugs you named are a very unlikely cause for chronic face pain of this type. I would also suggest that the dose you were on for Neurontin was likely below the threshold for therapeutic effects. Not everyone can take this med or others without significant side effects. But a trial at higher dose levels may get you better outcomes. My wife is able to take 2700 mg/day in divided doses, with minimal side effects, though others have reported problems as low as 1200 mg/day. Others have reported positive outcomes with meds in the class of tricyclic antidepressant drugs like Amitriptyline or Nortriptyline. The TCA drugs are recognized by the International Associatipon for the Study of Pain to have a cross-over action in moderation of neuropathic pain.
In general, though I understand your desire to be off meds, I must also caution that gaining early control of this variety of pain is strongly to be preferred. There is sound medical evidence that the longer your pain goes unmanaged, the more difficult it may be to get it under control if it progresses. One of the more reliable ways to get into trouble with TN of any type is to take yourself off anti-seizure meds too rapidly or to try to stay off these meds when your pain ramps up to 20 on a scale of 10 -- which can happen.
I wish you well in a difficult disorder.
Regards, Red
Doxycycline and cyclobenzaprine have no known interactions. While I wouldn't say that it's impossible, it's highly unlikely that the two interacted to give you this disease. Moreover, most side effects stop when you discontinue the medications. They are fairly old medications so something like this should have been caught in post-marketing surveillance reports if it's something drug related.
A personal pet peeve of mine is how western medicine is being denounced as harmful and evil and herbal medicine praised to the skies. A lot of prescription medications are actually derived from natural compounds. They are purified and thoroughly tested for efficacy and safety before being allowed to be sold, and they're only used under the guidance of qualified doctors and pharmacists. There's also post-marketing adverse events data that helps to pull dangerous meds from the market. However, herbal medicines and supplements are poorly regulated and have equal potential to cause side effects and interactions. They might not even contain what is written on the label!
Please consider giving medication another try. It could really alleviate your suffering.
Thank you for all of your replies. It is weird to think of those medications having a side effect, but it's the only correlation I can make. The doctors think I am crazy too haha…..I will probably try an anti-depressant medication when the fall begins. I'm currently going to acupuncture twice per week and also taking homeopathic medicine to try and fight this. I ordered the biogetica trigeminal neuralgia kit and have just begun it. I will keep you up to date with my progress. Thanks again for your support and useful information :-)
I don't think you're crazy, and your doctors shouldn't either. It's just that we can beat ourselves up going "if only I didn't do this, then none of this would ever have happened..."
The past is the past and we can't change it, and correlation doesn't mean causation. For example - muscle spasms can be co-morbid with TN. It could be that your muscle spasms were an early symptom of nerve problems in the area and manifested first. You took cyclobenzaprine and then boom - TN. It's easy to think that the cyclobenzaprine caused it but it could just be the disease naturally progressing. TN can be idiopathic, having no known cause.
Do keep us up to date! I hope things go well for you.
Dear rtmc21,
I just found the biogetica website, and am extremely interested in their natural products for atn pain relief. So I searched this sight, and your comment popped up.
I have ATN and have literally tried close to everything, and am running out of options for getting relief. I would so much appreciate to hear about your experience with biogetica, and to find out your results!! Please reply back, or better yet send me a message, I am desperate for ANYTHING at this point that might help. Thank you in advance for taking the time to read this, and hopefully your getting response.
Wishing you the best!
-Michelle
rtmc21 said:
Thank you for all of your replies. It is weird to think of those medications having a side effect, but it's the only correlation I can make. The doctors think I am crazy too haha…..I will probably try an anti-depressant medication when the fall begins. I'm currently going to acupuncture twice per week and also taking homeopathic medicine to try and fight this. I ordered the biogetica trigeminal neuralgia kit and have just begun it. I will keep you up to date with my progress. Thanks again for your support and useful information :-)
I also questioned if I had TN since my pain is in my lower jaw back teeth and sometimes lip. My tongue does burn and have pain off and on. I go to acupuncture once a week, down from 2 x a week, and find my tongue sometimes hurts a little more after treatment but the next day it is okay. I am not on meds a d found the Biogeticawebsite. I wish you the best of luck with this and would like to hear how you make out. I also started with a nutritionist who gave me supplements but cannot afford to do both. Best of luck to you.
Michelle, before anyone goes too far overboard concerning the Biogetica site and its claims, I would suggest that you read some of the critical reviews by companies or people who specialize in evaluating such claims. I found three to be particularly indicative:
http://review.easycounter.com/Biogetica-safe
https://www.mywot.com/en/scorecard/biogetica.com
http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm227652.htm
Easy Counter has flagged the site as potentially unsafe for children. The reviews on MyWot are scathing. And The FDA has issued warning letters to the owners of the Biogetica site on multiple grounds. The following is a direct extract:
This is to advise you that the Food and Drug Administration (FDA) and the Federal Trade Commission (FTC) reviewed your websites at the Internet addresses http://www.biogetica.com, www.fixdisease.com, www.guantumcure.com, www.fixherpes.com and www.quantumfix.com in August 2010. FDA has determined that the following Biogetica products, "Deliverance From Herpes Kit," "Herpes Optimal-Kit," "Herpes Essentials-Kit," "Freedom from Herpes Kit," "Epilepsy Essentials-Kit," "C20 Epilepsy Formula," "C55 Neuro Calming Formula," "Freedom from Epilepsy Formula (Epilepsy 1M)," "Diabetes Brittle Essentials-Kit," "Type II Diabetes Essentials-Kit," "Diabetes Insipidus Essentials-Kit," "Type I Diabetes Essentials-Kit," "Pre-Diabetes Essentials Kit," "Freedom from Diabetes Kit," "Deliverance From Gonorrhea," "Gonorrhea Formula," "Syphilis Formula 1," "Syphilis Formula 2," "Syphilis Formula 3," "Deliverance From Chlamydia Kit," and "Chlamydia Venereal Mix Formula," are promoted for conditions that cause them to be drugs under section 201(g)(1)(B) of the Federal Food, Drug, and Cosmetic Act (the Act) [21 U.S.C. § 321(g)(1)(B)]. The therapeutic claims on your websites establish that the products are drugs because they are intended for use in the cure, mitigation, treatment, or prevention of disease. The marketing of these products with these claims violates the Act.
In addition, it is unlawful under the FTC Act, 15 U.S.C. § 41 et seq., to advertise that a product can prevent, treat, or cure human disease unless you possess competent and reliable scientific evidence, including, when appropriate, well-controlled human clinical studies, substantiating that the claims are true at the time they are made. See FTC v. Direct Mktg. Concepts, 569 F. Supp. 2d 285, 300, 303 (D. Mass. 2008); FTC v. Nat'l Urological Group, Inc., No. 1:04-CV-3294-CAP, 2008 U.S. Dist. LEXIS 44145, at *43-44 (N.D. Ga. June 4,2008); FTC v. Natural Solution, Inc., No. CV 06-6112-JFW, 2007 U.S. Dist. LEXIS 60783, at *11-12 (C.D. Cal. Aug. 7, 2007). More generally, to make or exaggerate such claims, whether directly or indirectly, through the use of a product name, website name, metatags, or other means, without rigorous scientific evidence sufficient to substantiate the claims, violates the FTC Act. See In re Daniel Chapter One, No. 9239, slip op. 18-20,2009 WL 516000 (F.T.C.), 17-19 (Dec. 24, 2009) (http://www.ftc.gov/os/adjpro/d9329/091224commissionopinion.pdf.)
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Thus my overall impression from public commentaries is that these folks may be phony as a three dollar bill. Use exceptional caution in applying any of their products, and be sure your primary care providers are told before you do.
Sincerely, Red
Michellejen said:
Dear rtmc21,
I just found the biogetica website, and am extremely interested in their natural products for atn pain relief. So I searched this sight, and your comment popped up.
I have ATN and have literally tried close to everything, and am running out of options for getting relief. I would so much appreciate to hear about your experience with biogetica, and to find out your results!! Please reply back, or better yet send me a message, I am desperate for ANYTHING at this point that might help. Thank you in advance for taking the time to read this, and hopefully your getting response.
Wishing you the best!
-Michelle